Medical Humanities

This textbook brings the humanities to students in order to evoke the

humanity of students. It helps to form individuals who take charge of their
own minds, who are free from narrow and unreflective forms of thought, and
who act compassionately in their public and professional worlds. Using
concepts and methods of the humanities, the book addresses undergraduate
and premed students, medical students, and students in other health
professions, as well as physicians and other health care practitioners. It
encourages them to consider the ethical and existential issues related to the
experience of disease, care of the dying, health policy, religion and health,
and medical technology. Case studies, images, questions for discussion, and
role-playing exercises help readers engage in the practical, interpretive, and
analytical aspects of the material, developing skills for critical thinking as
well as compassionate care.
THOMAS R. COLE is the McGovern Chair in Medical Humanities and
Director of the McGovern Center for Humanities and Ethics at the University
of Texas Medical School at Houston. Dr. Cole has published many articles
and several books on the history of aging and humanistic gerontology. His
The Journey of Life: A Cultural History of Aging in America (1992) was
nominated for a Pulitzer Prize. His book, No Color Is My Kind, and
accompanying film, The Strange Demise of Jim Crow (1997), were
nominated for a National Humanities medal. His work has been featured in
the New York Times; on National Public Radio, Voice of America, and PBS;
and at the United Nations.
NATHAN S. CARLIN is Associate Professor at the McGovern Center for
Humanities and Ethics and Director of the Medical Humanities and Ethics
Certificate Program at the University of Texas Medical School at Houston.
He has coauthored two previous books, Living in Limbo: Life in the Midst of
Uncertainty (2010) and 100 Years of Happiness: Insights and Findings from
the Experts (2012). He has also published more than 100 journal articles,
book chapters, and book reviews in about a dozen different journals.
RONALD A. CARSON is Professor Emeritus at the Institute for the Medical
Humanities, University of Texas Medical Branch at Galveston. He has
received fellowships from the Institute on Human Values in Medicine, the
Council for Philosophical Studies, and the National Endowment for the
Humanities. He is an elected Fellow of the Hastings Center, a former
president of the Society for Health and Human Values, and a recipient of that
society’s annual award. He has written many articles, chapters, and book
reviews. He is coeditor of four books, including Practicing the Medical
Humanities: Engaging Physicians and Patients (2003).
 Medical Humanities

An Introduction

Thomas R. Cole
University of Texas Medical School at Houston
Nathan S. Carlin
University of Texas Medical School at Houston
Ronald A. Carson
University of Texas Medical Branch at Galveston
32 Avenue of the Americas, New York, NY 10013-2473, USA

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© Thomas R. Cole, Nathan S. Carlin, and Ronald A. Carson 2015
This publication is in copyright. Subject to statutory exception and to the
provisions of relevant collective licensing agreements, no reproduction of any
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Press.

First published 2015

Printed in the United States of America
A catalog record for this publication is available from the British Library.
Library of Congress Cataloging in Publication Data
Cole, Thomas R., 1949– author.
Medical humanities : an introduction / Thomas R. Cole, University of Texas
Medical School at
Houston, Nathan S. Carlin, University of Texas Medical School at Houston,
Ronald A. Carson,
University of Texas Medical Branch at Galveston.
pages cm
Includes index.
1. Medical ethics. 2. Medicine and the humanities. I. Carlin, Nathan, author.
II. Carson, Ronald A., 1940– author. III. Title.
R724.C546 2015
174.2–dc23 2014020978
ISBN 978-1-107-01562-3 Hardback
ISBN 978-1-107-61417-8 Paperback
Cambridge University Press has no responsibility for the persistence or
accuracy of URLs for external or third-party Internet Web sites referred to in
this publication and does not guarantee that any content on such Web sites is,
or will remain, accurate or appropriate.
 Contents
List of Figures
Preface

Introducing Medical Humanities

Part I. History and Medicine

Overview
1. The Doctor-Patient Relationship
2. Constructing Disease
3. Educating Doctors
4. Technology and Medicine
5. The Health of Populations
6. Death and Dying

Part II. Literature, the Arts, and Medicine

Overview
7. Narratives of Illness
8. Aging in Film
9. Medicine and Media
10. Poetry and Moral Imagination
11. Doctor-Writers
12. Studying Medicine

Part III. Philosophy and Medicine

Overview
13. Ways of Knowing
14. Goals of Medicine
15. Health and Disease
16. Moral Philosophy and Bioethics
17. Medicine and Power
18. Just Health Care

Part IV. Religion and Medicine

Overview
19. World Religions for Medical Humanities
20. Religion and Health
21. Religion and Reality
22. Religion and Bioethics
23. Suffering and Hope

Epilogue

Notes
Index
Figures
1. The Doctor, 1891. Sir Luke Fildes
2. Four Humours, 1574. Leonhart Thurneisser zun Thurn
3. Title page of De Humani Corporis Fabrica, 1543. Andreas Vesalius
4. Sleeping, 2012. Michael Bise
5. Emerging Infectious Diseases, 2000. Eric Avery
6. Baile con la Talaca, 1984. Luis Jimenez
7. Fallen, Fallen, Light Renew, 2005. Mary McCleary
8. Wild Strawberries (single film frame), 1957. Ingmar Bergman
9. Mercy (still photo), 2009–10. NBC
10 Typography, 1971. Unknown
11. American Poet, 1955. Hulton Archive/Getty Images
12. Skeleton Contemplating a Skull, from De Humani Corporis Fabrica,
1543. Andreas Vesalius
13. Portrait of Dr. Samuel D. Gross, 1875. Thomas Eakins
14. Untitled (Moons), No. 4, 1998. Michael Golden
15. Winged Victory (Winged Woman Walking X), 1995. Stephen De
Staebler
16. School of Athens (detail), 1510–11. Raffaello Sanzio of Urbino
17. Boston Doctors, 1850. Albert Sands Southworth
18. Between Darkness and Light, 2005. Mary McCleary
19. Cycladic Idol from Syros, ca. 2000 BCE. Unknown
20. Praying Skeleton, 1733. William Cheselden
21. Männliches Bildnis (Selbstbildnis) Portrait of a Man (Self Portrait),
1919. Erich Heckel
22. Separacion del Cuerpo y del Alma (Separation of the Body and the
Soul), no date. José Guadalupe Posada
23. Famine in Sudan, 1993. Kevin Carter
24. Hands Holding the Void, 1934. Alberto Giacometti
 Preface

This volume represents the first textbook in medical humanities. After

decades of teaching in both medical and undergraduate schools, we wrote the
book because there was still no single resource for interested students and
faculty. While there are edited volumes in medical humanities, these books
do not offer a coherent vision of or engagement with the field. We wrote this
book to present such a vision and engagement.
We define medical humanities as an inter- and multidisciplinary field that
explores contexts, experiences, and critical and conceptual issues in medicine
and health care, while supporting professional identity formation. Our vision
of the field is rooted in the humanistic educational ideal that aims to form
individuals who take charge of their own minds, who are free from narrow
and unreflective forms of thought, who are compassionate, and who act in the
public or professional world. The book aims to stimulate and enhance both
critical thinking and character development. We aim not only to bring the
humanities to students but also to evoke the humanity of students.
The book is designed to serve as the backbone of courses in medical
humanities, whether they are general introductory courses or more
specialized courses (e.g., in literature, history, philosophy, religious studies,
or social science). The chapters can be assigned sequentially or by section, or
by the theme of a particular chapter (e.g., the history of medical technology,
death and dying, just health care, or suffering and hope). The volume can be
used with undergraduate students, graduate students, medical students, or
other students in the health professions. It contains additional resources and
materials that will engage advanced students and enable teachers to use the
book in graduate courses.
The chapters are structured to maximize ease of comprehension and
student interaction. All chapters open with an abstract and close with a
summary. In addition, most chapters contain several distinctive elements: (1)
a case study or primary source to engage students more actively in the
practical, interpretive, or analytical aspects of the materials; (2) a visual
image – a photograph, print, or painting – along with commentary, questions,
and references for further exploration; (3) exercises for critical thinking and
character formation, including questions for discussion, role playing, and
suggested writing exercises; and (4) further resources, including suggested
reading and viewing as well as lists of relevant journals and related
organizations or groups.
Writing the book was a huge undertaking. It has grown out of many years
of colleagueship and friendship, which has made the process more enjoyable
(if such a thing can be said of writing a textbook) and has made possible
consistency in perspective and authorship. Ronald A. Carson served as
director of the Institute for the Medical Humanities at the University of Texas
Medical Branch in Galveston and built it into a leading medical humanities
research and teaching center from 1982 until 2005. Carson mentored Thomas
R. Cole, who went to work at the Institute in 1982, where he founded the first
graduate program in medical humanities and directed it for more than a
decade. In 2004, Cole moved to Houston to found the McGovern Center for
Humanities and Ethics at the University of Texas Health Science Center in
Houston. There he began working with and mentoring Nathan S. Carlin, who
went to work at the McGovern Center in 2009, where he serves as director of
the Certificate Program in Humanities and Ethics and also administers a
program in interprofessional ethics. Cole and Carson had wanted to write a
textbook together for years. But writing a textbook is hard – and especially so
for a field as diverse and vast as medical humanities – so they recruited
Carlin (because he has somewhat of an architectural mind) to coauthor the
book with them.
The book that you are holding took more than four years to produce.
Perhaps a word about the process of writing this book is in order. Carlin
proposed the original structure of the book, dividing it into four sections:
history, literature, philosophy, and religion. This made intuitive sense to Cole
and Carson, so the next step was to divide the writing assignments. Cole, a
trained historian, wrote the history section. As a teacher of literature and
medicine, Carson authored the literature section. And Carlin, a pastoral
theologian, wrote the religion section. The philosophy section was divided
among all three authors. With a few exceptions, this is how the writing
assignments were determined. Cole also enlisted Benjamin Saxton to
coauthor almost all of his chapters. Saxton, whose graduate training is in
English, coauthored Chapters 1–6, 8, and 15. Carlin and Cole wrote the
Introduction, and Cole wrote the Epilogue.
This book was a collaborative effort in every respect. For example, Carlin
wrote the first draft of the book proposal and the introduction and then
received feedback from Cole and Carson, revising accordingly. The rest of
the book followed this basic process: an author would draft a chapter, then
the others would critique it, and the author would make appropriate revisions.
In the course of writing this book together, the authors engaged each other in
numerous day-long meetings and conference calls, critiquing each other’s
work. At the last stage, Cole went through every chapter and made editorial
suggestions to help unify the book. This collaborative process is what gives
the book a more consistent voice than is possible in an edited volume. We
should also note that we made every effort to remain faithful to various forms
of academic discourse, meaning that sometimes the chapters vary –
intentionally – in style. Finally, we should note another editorial decision to
insert birth and death dates after the first mention of significant persons born
before 1951.
There are many people to whom we are grateful, both personally and
professionally, and many of these persons helped bring this book into being.
We would like to thank Beatrice Rehl, Anastasia Graf, and Isabella Vitti at
Cambridge University Press. Many colleagues provided extensive feedback,
including Amir Cohen-Shalev, Jack Coulehan, Jason Glenn, Andrew Lustig,
James Schafer, and Delese Wear – this book is much stronger for their
feedback. Other colleagues also provided us with valuable feedback and/or
insightful conversations along the way, including Andrew Achenbaum,
Bryant Boutwell, Marcia Brennan, Howard Brody, Jai Gandhi, Brian
Hurwitz, Tess Jones, Marc Kaminsky, Samuel Karff, Steven Linder, Rebecca
Lunstroth, Laurence McCullough, Kate de Medeiros, William Metcalf
Deutsch, Guy Micco, Kirsten Ostherr, Steven Smith, and Jeffrey Spike.
Others provided other forms of help: Beatriz Varman served as a fact
checker, Angela Polczynski looked up sources, and Shirley Pavlu helped with
administrative responsibilities relating to the book’s production.
We would also like to thank two research consultants in particular: Andrew
Klein and William Howze. Klein helped with the team’s early efforts to
orient the project within the field of medical humanities and also contributed
to the chapters’ supplementary materials (e.g., case studies and abstracts).
Howze, an art historian and video producer, selected the works of art that
accompany each chapter and wrote the reflective essays embedded within the
chapters. Howze previously collaborated with Cole to edit and produce the
documentary The Strange Demise of Jim Crow. Many of the works come
from the collections of the Museum of Fine Arts, Houston.
To secure images of works of art used in this book, a number of individuals
were particularly helpful. For their generous assistance to select these works
and to provide image files, we wish to thank Rebecca Dunham, Veronica
Keyes, and Marti Stein. Several works are by Texas artists represented by
Moody Gallery in Houston. For her enthusiastic support of this project, we
wish to thank Betty Moody and her associates Lee Steffy and Adrian Page.
Artist and teacher Gael Stack, also represented by Moody Gallery, offered
thoughtful advice and heartfelt encouragement. For bringing to our attention
the striking sculpture by Stephen De Staebler in front of the Moores Opera
House at the University of Houston, we wish to thank Ted Estess, and for
permission to reproduce it here, we are grateful to Michael Guidry and Jill
Ringler. Without the patient assistance of rights managers at other museums,
picture agencies, and similar organizations, it would not be possible to
publish the range of images included in this book. In particular, we wish to
thank Emma Aderud, Casey Anderson, John Benicewicz, Capucine Boutee,
Beth Braun, Natalie Costaras, Clive Coward, Joe Maloney, Emilie Le
Mappian, Kay Menick, Katie Mishler, Maria Elena Murguia, Kathleen
Mylen-Coulombe, Michael Slade, Alison Smith, Kajette Solomon, Alison
Strum, and Judith Thomas.
We would like to thank the John P. McGovern Foundation for its continued
support for the McGovern Center for Humanities and Ethics. And Cole
would like to thank UTHealth, especially President Giuseppe Colasurdo, for
a sabbatical during the 2013–2014 academic year.
Finally, a few dedications: Cole would like to dedicate this book to the
memory of Christopher Lasch. Carlin would like to offer his dedication to
Donald Capps. And Carson offers these words: “For Richard C. Reynolds
and Melvyn H. Schreiber, to whom I owe a debt I cannot repay but herewith
gratefully acknowledge.”

Thomas R. Cole
 Nathan S. Carlin

Ronald A. Carson
January 2014
Houston, Texas
 Introducing Medical Humanities
Of the physician’s character, the chief quality is humanity, the
sensibility of heart which makes us feel for the distress of our fellow-
creatures.1
– John Gregory

Introduction
“I had undergone three heart surgeries in two years,” Dr. Steven Hsi writes,
“numerous tests, dozens of visits to doctors’ offices, extended stays in
hospitals and long recuperative periods at home.”2 He continues:

I was 43 years old, a successful physician, married to a wonderful

woman and blessed with two fine sons – all of it assaulted by a rare
heart disease of such catastrophic power that it did more than threaten
my life. It nearly destroyed my family.3

Dr. Hsi and his family coped well enough, he writes, but no one, especially
none of his doctors, asked him what he felt to be the most important
questions: “What has this disease done to your life? What has it done to your
family? What has it done to your work? What has it done to your spirit?”4
“Regardless of the considerable compassion and caring of many of them,”
Dr. Hsi concludes, “no one asked the questions that needed to be asked. I
have come to believe this oversight was the single most grievous mistake my
doctors made.”5 Existential questions – questions about the meaning of life
and death – are essential to medicine. This book is designed to help you
engage the most important questions.
During the last fifty years, health care professionals have struggled with
dehumanizing tendencies created by the unprecedented success of modern
medicine and the commercialization of the health care system – not enough
time to see patients; technology that shifts attention to machines rather than
patients; growing incentives to put profits above patients; a biomedical
reductionism that attends to pain but not suffering and to disease but not
illness; and institutional cultures that undermine the health of physicians,
students, and others who work in academic health centers.6 Progress in
biomedicine has also generated a great deal of moral uncertainty and ethical
conflict. Since the 1960s, the new fields of bioethics and medical humanities
have grappled with problematic issues such as the protection of research
subjects, the goals of health care, the definition of death, the rights of
patients, the cessation of treatment, the meaning of illness, and the
distribution of health care resources.7 Most of these topics lie within the
purview of bioethics, which emerged as a field alongside medical humanities
and was perhaps indistinguishable from it at first. Indeed, medical humanities
considers and addresses many of the ethical problems addressed by bioethics
and in some ways overlaps with bioethics.8 However, medical humanities
tends to focus not on the practical resolution of ethical problems but on their
cultural and historical contexts, emotional and existential dimensions, and
literary and artistic representations.9 Medical humanities is also closely
linked to newer reforms in medical education that address the erosion of
public trust and the impersonal quality of relationships between patients and
health care professionals. These efforts focus on, for example,
professionalism, the renewal of spirituality, relationship centered care,
cultural competence, and narrative medicine.10 Each of these fields or
movements seeks to address the dehumanization of medicine – experiences
such as Dr. Hsi’s – in one way or another; medical humanities is the most
intellectually comprehensive of them.
While we offer our own definition of and vision for medical humanities
below, perhaps it is best to begin by defining not medical humanities but the
humanities more broadly. What are the humanities? Why do they matter?
And how did they come to be engaged with medicine and health care?

Defining the Humanities

What we now call the humanities first emerged during the fifth century BCE
in ancient Greece, when teachers of rhetoric focused on preparing free men to
participate in democratic deliberation, which required mastery of the arts of
language rather than the art of war. Then, as now, success in the public realm
required the capacity for rational argumentation and persuasion.
The word “humanities” derives from the Latin word humanitas. Originally,
humanitas – in English “humanity” – meant humane feeling, which today
could be known variously as sympathy, empathy, compassion, pity, concern,
or caring. It was also understood as a kind of virtue inspired by knowledge or
a quality of refinement achieved by intellectual accomplishment. Humanitas
in this sense was similar to the Greek term philanthropia, that generous spirit
toward others that ideally results from education in the liberal arts. In the
fourteenth-century Italian Renaissance, Petrarch (1304–1374 CE)
rediscovered the term humanitas from Cicero (104–43 BCE) and shaped it
into the ideal of forming a person who combines humane feeling with liberal
learning and action in the world.11 This threefold ideal was built into the
tradition of liberal education in the United States and reformulated by Lionel
Trilling (1905–1975) as the “humanistic educational ideal”12 in the 1970s,
when it first came under severe criticism from postmodernist thinkers. The
humanistic educational ideal can be seen in strong form today, for example,
in the work of Martha Nussbaum (1947–).13 For all its limitations, we support
this ideal, which is wholistic, fluid, and individual. This bears repeating:
humanistic education aims at forming a whole person who is compassionate,
knowledgeable, and who acts in the world. It aims to educate the emotions as
well as the intellect, to enhance compassion as well as critical thinking, and
to encourage active engagement in public and/or professional life.
Defining the humanities today is not a simple task. They can be defined by
subject matter, disciplines, or methods, but no final definition is possible or
perhaps even desirable. Defined by its subject matter, the humanities reflect
on the fundamental question, “What does it mean to be human?” As the
Rockefeller Commission on the Humanities put it in 1980: The humanities
“reveal how people have tried to make moral, spiritual, and intellectual sense
of a world in which irrationality, despair, loneliness, and death are as
conspicuous as birth, friendship, hope, and reason. We learn how individuals
or societies define the moral life and try to attain it, attempt to reconcile
freedom and the responsibilities of citizenship, and express themselves
artistically.”14 Defined by disciplines, the humanities range from languages,
literature, history, and philosophy to religious studies, jurisprudence, and
those aspects of the social sciences (in particular anthropology, sociology,
and psychology) that emphasize interpreting, valuing, and self-knowing.
Defined by their methods, the humanities have been delineated by Ronald S.
Crane (1886–1967) as the cultivation of four essential “arts: language,
analysis of ideas, literary and artistic criticism, and historiography.”15 Rather
than mathematical proof or reproducible results (i.e., scientific ways of
knowing), humanities scholarship and education are dedicated to
understanding human experience through the disciplined development of
insight, perspective, critical understanding, discernment, and creativity. Still
it seems that disciplines, subject matter, and methods – whether taken
separately or together – cannot adequately characterize the humanities
because the humanities ultimately emphasize description, interpretation,
explanation, and appreciation of the variety, uniqueness, complexity,
originality, and unpredictability of human beings striving to know – and to
change – themselves and their world.
Since the 1960s, a cascade of new intellectual movements and projects has
broadened the scope of the humanities beyond its traditional boundaries to
include what Cathy Davidson and David Goldberg call “interdisciplinary
humanities”16 (e.g., ethnic studies; age studies; gender studies; disability
studies; cultural studies; media studies; science, technology, and information
studies; and global studies). Medical humanities, and its emerging sibling
health humanities, are among these interdisciplinary forms of study called
into being by social needs and problems that cannot be adequately addressed
within the boundaries set by traditional disciplines and/or methods.

The Origins of Medical Humanities

Before the late nineteenth century, there were no great research universities
or medical schools in the United States. Learned physicians were trained at
European universities and were steeped in the classical tradition of
humanistic education. Medical students in London, Edinburgh, Paris, Padua,
and Vienna had to be well versed in Greek, Latin, and the classical liberal arts
and were required to read the works of Galen (131–201) and Hippocrates
(460–377 BCE), among other predecessors, in Latin. History – knowledge of
and identification with medicine’s vision of its past – was a central dimension
of their professional identity and authority.17
Over the centuries, what we now call the humanities became more
specialized and focused on pure scholarship, increasingly divorced from the
life of feelings and of moral and public engagement. In the second half of the
nineteenth century, this tendency toward pure scholarship was powerfully
accelerated by German research universities, which emerged as the exemplar
of specialized research in all areas of the arts and sciences. The dynamism
and growth of knowledge embedded in the ethos of science replaced the
preservation and transmission of tradition inherent in classically based
education.
At the end of the nineteenth century, as more and more American medical
students and physicians traveled to Germany to study in experimental
laboratories and to learn about clinical specialties, biomedical science was
rapidly displacing the old humanistic medicine as a source of identity and
authority. When enthusiasts brought back the German model to new
university medical schools in the United States, some began to advocate a
new vision of medicine as an exact science. Yet when Johns Hopkins
University Medical School (based on the German model) opened its doors in
1893, its most ardent advocates worried about excessive specialization,
reductionistic thinking, commercialism, and moral drift. They worried, in
other words, about the dehumanization of medicine. So it might be argued
that medical humanities has its origin here, when men like William Osler
(1849–1919) and John Shaw Billings (1838–1913) looked for a way of
preventing science and business from taking the “soul” out of medicine.
Indeed, Osler both embodied and articulated the holistic ideal of humanitas
or humanistic education. For him, medicine was an art as well as a science; it
was a calling rather than a business and required education of the heart as
well as the head.
When neurosurgeon Harvey Cushing (1869–1939) spoke at the dedication
of the first American professorship in the history of medicine at Johns
Hopkins in 1929, he yearned for an idealized medical culture that was
irrevocably lost: “Medicine has become so scattered and subdivided,” he
declared, “that there is a crying need for someone to lead it from the
wilderness and bind it together.”18 Osler, Billings, Cushing, and others
looked to history as the key to the revival of humane and morally centered
medicine. This form of historically based medical humanism (which has its
contemporary adherents19) had both strengths and weaknesses. On the one
hand, its strength derived from its emphasis on cultivation – the learned
education and identity formation of humane physicians. On the other hand, it
was limited by a white, male, upper class exclusivity: there was no room for
women, Jews, African Americans, or other minorities. In addition, the
Oslerian “great man” version of medical history had no awareness of the
multiple ways that the history of medicine can be told. Judged by the
standards of contemporary scholarship, it was insufficiently critical and self-
critical and was based as much on nostalgia as on the search for historical
truth.
There is also a fascinating twist in the recent history of the humanities in
general and the history of medical humanities in particular. At the same time
that a historically minded medical humanism was developing in medical
schools in response to the dehumanization of medicine, the humanities
located in colleges and universities were distancing themselves from the
tradition of Western humanism. Beginning in the 1960s, professional
academics in the humanities largely severed their connection to the ancient
tradition of humanitas. By and large, the mainstream professoriate distanced
itself from ideals of individual cultivation and civic engagement. Indeed,
some took the tradition of Western humanism itself to task, as they came to
see the humanist tradition as the product of “dead white men” who had
enjoyed privileged lives, ignored questions of power, and neglected issues of
race, gender, and class (and, more recently, age and sexual orientation). They
argued that the ideas, images, and concepts from the humanist tradition were
little more than tools used to justify the domination of white European (and
American) males over colonized populations, women, and people of color.20
Ironically, medical humanities in its current form began to take shape in
the late 1960s and 1970s at precisely the time when university scholars in the
humanities disciplines were distancing themselves from the term humanism
and the curriculum of “great books” of the Western tradition.21 The most
prolific and influential proponent of medical humanism in this period was
Edmund Pellegrino (1920–2013), a physician-reformer who chaired the
Institute on Human Values in Medicine and later became president of
Catholic University, and eventually served as chair of the President’s Council
on Bioethics.
In a paper delivered in 1976, Pellegrino noted that the term humanism had
become slippery and difficult to define. Nevertheless, he pointed out, in some
circles medical humanism had achieved the status of a “salvation theme,”
meant to absolve modern medicine of its “sins.” The list of “sins” Pellegrino
noted was a long but valuable specification of problems usually lumped
together under the rubric of dehumanization: “overspecialization; technical;
overprofessionalization; insensitivity to personal and sociocultural values; too
narrow a construal of the doctor’s role; too much science; not enough liberal
arts; not enough behavioral science; too much economic incentive; a ‘trade
school’ mentality; insensitivity to the poor and socially disadvantaged;
overmedicalization of everyday life; inhumane treatment of medical students;
overwork by house staff; deficiencies in verbal and nonverbal
communication.”22 As a Roman Catholic, Pellegrino was mocking the
salvific tendency among enthusiasts of medical humanism, and he articulated
more modest goals: “Medical humanism is really a plea to look more closely
at what medicine should be, and increasingly seems not to be. It encapsulates
a pervasive ambivalence felt by even the most ardent devotees of modern
medicine: Can we balance the promises of medical technology against the
threats it poses to persons and societies? ... [Human beings] have always
sensed that the more tools they forged and the more machines they built, the
more they were forced to know, to love, and to serve these devices.”23
Pellegrino realized that the classical humanist training of Osler and his
forbears was gone forever. So it was best, he thought, to abandon the attempt
to make every physician “a Renaissance man.” Instead, Pellegrino outlined
three essential goals for the humanities in medicine (the term “medical
humanities” did not come into widespread use until the 1980s and 1990s).
First, the humanities would help clarify the ethical issues and values at stake
in clinical decisions (through his efforts at the Institute on Human Values in
Medicine, Pellegrino played a major role in establishing bioethics in the
1980s.) Second, the humanities would inculcate habits of critical self-
examination. And third, the humanities would “confer those attitudes which
distinguish the educated from the merely trained [professional].”24 From
Pellegrino’s list and language of goals for the humanities in medicine, we can
see that his vision contained much of the humanitas ideal (a personal
integration of knowledge, compassion, and action in the world), expanded
somewhat beyond the gentlemanly version of medical humanists in Osler’s
generation. What was new in Pellegrino’s vision of humanistic education in
medicine was his recognition of the need for scholarship and guidance from
scholars trained in the disciplines of the humanities.
The Term “Medical Humanities”: Debates and
Problems
The field of medical humanities can be conceptualized, theorized, defined,
and debated indefinitely. We offer here a few of the major ways of thinking
about the field as well as our own definition that will guide our presentation
of and approach to the topics covered in this book.

A Field or Discipline?
Medical humanities, as noted, draws on many disciplines, including history,
literature, philosophy, religion, anthropology, sociology, and other arts and
sciences. One area of debate is whether medical humanities is a field or a
discipline,25 and whether it is multidisciplinary (i.e., uses various disciplines
and approaches, separately, to examine a topic) or interdisciplinary (i.e., uses
various disciplines and approaches that are integrated in some way to
produce a new form of knowledge).26 Our own position is that medical
humanities is a field, not a discipline, and is both multidisciplinary and
interdisciplinary. These distinctions and debates are important and helpful,
but the key point is that medical humanities draws from many disciplines to
examine issues related to the development and practice of medicine and
health care. In this sense, it is similar to other fields such as religious studies
or gender studies that utilize various disciplines and methods to study a
subject such as religion or gender. What is different, however, is that medical
humanities, unlike many other academic fields, has an essential practical
component because all medical humanities knowledge carries implications
for the care of patients, the professional development of students, the
continuing education of residents and physicians, and/or the health of
populations.27

The Problem of Exclusivity and Hierarchy

In the debate over the term medical humanities, one objection is that the term
privileges doctors over other health professionals, such as nurses, dentists,
and public health professionals. The term, it is argued, is hierarchical and
patriarchal and reinforces certain undesirable qualities of cultures of
medicine.28 For this reason, some writers suggest the term “health
humanities.” This spirit of inclusivity and equality among the health
professions, which we support, is reflected in journal titles such as The
Cambridge Quarterly of Healthcare Ethics as opposed to the more restrictive
and potentially hierarchical term medical ethics. In recent years, the British
literary scholar and broadcaster Paul Crawford has championed the health
humanities intellectually and organizationally.29 And in 2014, Therese Jones,
Delese Wear, and Lester D. Friedman (1945–) chose to title their
comprehensive collection of essays The Health Humanities Reader.30 While
we support (and have ourselves published in the service of inclusivity and
equality of the health professions31), we retain the term medical humanities.
One reason is that the vast majority of scholarship in health humanities
focuses on medicine. Another is a matter of scope; this is, in fact, a textbook
in medical humanities, not health humanities. Although there is a good deal
of material on public health and on nonallopathic forms of healing and care,
this book is primarily about medicine. No book can be entirely
comprehensive, and what we are introducing – medical humanities – might in
fact someday become a subfield of health humanities. In taking this
perspective, we will keep in mind this critique of power and hierarchy and
will incorporate such critiques into various chapters.

The Tension between the Practical/Instrumental

and the Intellectual/Critical
Within medical humanities, there is also an important tension between the
instrumental justification for and the intellectual practice of the humanities –
that is, the tension between using the humanities to produce more humane
physicians and better patient care versus practicing the humanities to generate
new knowledge, insight, and critical thinking. Anne Jones (1944–), in one of
the first articulations and justifications of medical humanities, warned against
the assumption that studying the humanities make students more humane:
“This expectation makes me very uncomfortable,” she wrote in 1987,
because “[t]his expectation is a burden, not just for literature, for but for all of
the humanities. We all hope that it will [make one more humane], but there
have been too many examples to the contrary for me to believe in any
guarantee.”32 In addition, some scholars oppose the very idea of an
instrumental justification for the humanities in medicine and the health
professions.33 In arguing against a purely instrumental approach, Jones,
Wear, and Friedman write in support of “the intellectual practice of the
humanities, which enables and encourages fearless questioning of
representations of caregivers and patients in all their varieties, challenges
abuses of power and authority, and steadfastly refuses to accept the
boundaries that science sets between biology and culture.”34 We believe that
the tension between the practical/instrumental and the intellectual/critical
forms of medical humanities is a necessary and healthy one that will continue
to energize this field where the growth of knowledge fuels both cultivation
and critique.

Conceptions and Goals of Medical Humanities

In “Medicine and the Humanities – Theoretical and Methodological Issues,”
Raimo Puustinen, Mikael Leiman, and Anna Maria Viljanen note several
conceptions of medical humanities that we find to be helpful. They point out
that in the last half century, there has been a growing recognition in clinical
medicine that, as they put it, “the biological approach alone cannot address
the various human phenomena that physicians encounter in their everyday
practice.”35 In other words (and as noted above), there has been a paradigm
shift away from what might be called medical reductionism to medical
holism, where patients are not reduced to diseases and bodies but rather are
seen as whole persons in contexts and in relations. The chief theorists of this
paradigm shift in clinical medicine cited by these authors are George Engel
(1913–1999) and his biopsychosocial model of medicine,36 Eric Cassell
(1928–) and his conception of personhood,37 and Edmund Pellegrino and
David Thomasma (1939–2002) and their philosophy of medicine.38 Another
important and more recent author here is the physician Christina Pulchalski,
who has developed a model of spiritual care.39
Puustinen, Leiman, and Vijanen further note that along with the movement
from medical reductionism toward medical holism, students and reformers in
medical education in the 1960s began to question the more or less exclusive
biomedical curricula of medical schools. Over the next thirty years, in
“response to this criticism, courses on social sciences and humanities were
included in medical curricula at many of the medical facilities in the United
States.”40 They continue:
 It was assumed that incorporating humanities as a part of medical
training could bridge the gulf between science and human experience.
The aim was to educate more humane physicians and to recapture the
notion of medicine as a learned profession.41

While Puustinen, Leiman, and Vijanen do not elaborate on these three goals
of medical humanities – bridging the gulf between science and human
experience; educating more humane physicians; and recapturing the notion of
medicine as a learned profession rather than vocational training – we offer
some critical reflection on these goals and specify a fourth goal that is moral
and political.

Medical Humanities as Bridge between Science and

Experience
For most of the twentieth century, clinical medicine focused almost
exclusively on biomedicine and discounted psychological and social
information. Challenging pure biomedicine in 1980, Engel articulated a
biopsychosocial model of medicine that legitimized this data and refined the
ways of gathering and integrating it into patient care.42 Clinical medicine,
Engel insisted, is not only biomedical; it is also psychological and social.
Health and illness, in other words, cannot be understood with lab results
alone but only by attending to the patient’s psychological experiences and
social environments. Engel’s biopsychosocial model of medicine is a medical
humanities enterprise in that it attempts to bridge the gulf between science
and experience. Likewise, in 1991, Cassell also attempted to legitimate non-
biomedical forms of data – specifically, data related to suffering as
distinguished from pain (bodies feel pain, Cassell argues, but persons
suffer43). Both of these medical humanities approaches are clinically
focused.44 Additionally, efforts to bridge the gulf between science and
experience have been greatly strengthened by the philosophical distinction
between “disease” and “illness.”45 Disease – what happens to the body – is
understood through science. Illness – what the person experiences – is
understood through eliciting patient stories,46 and by asking questions such
as, “What has this heart disease done to your family?” Providing
opportunities for conversations about such questions makes possible
emotional and spiritual healing, whether or not physical curing (to use
another important distinction) is possible.47
Other such approaches to bridging science and medicine, to name only a
few, include reading stories about illness and pathographies,48 watching films
and theatrical representations of illness,49 and viewing paintings and
sculptures that represent the body in pain.50 A related theoretical question to
the relationship between science and experience is whether medical
humanities ought to be regarded as integrating science and humanities in
medical education, or, rather, whether humanities simply should be added to
a largely scientific medical education.51

Medical Humanities as Educating More Humane

Physicians
One reason that medical humanities gained footing in medical schools was
that, until recently, medical educators and administrators more or less
assumed that teaching ethics courses would result in bolstering ethical and
professional behavior. When it became clear that this assumption was not
necessarily correct, a new and broader emphasis on teaching professionalism
emerged. Jack Coulehan (1943–) offers several reasons why. The first is that
the widespread use of expensive technology in medicine often led to a
conflation of self-interest and altruism. CT scans and MRIs, for example, are
powerful tools, but their unnecessary use drives up the costs of health care
and reveals a conflict between patients’ needs and physicians’ self-interest.
Another reason is that patients were becoming less satisfied with what
technology was actually offering (e.g., when end-of-life care only prolongs
suffering). Patients also began to complain that specialists seemed more
interested in looking at their diagnostic machines than in listening to them. A
third reason, which is related to the first, involves the rise of commercialism
in medicine, an observation that patients had about the shift in the larger
culture of medicine. The development of for-profit hospitals, managed care
organizations, and physician relationships with pharmaceutical and biotech
companies created new and visible conflicts-of-interest. In American
medicine’s commercialized culture, it became clear that students needed to be
taught and physicians needed to be reminded that they are professionals and
that a profession is morally grounded in altruism and fiduciary responsibility.
 We suggest that medical education needs to provide some guidance about
what being a professional means in the new culture of medicine, that is, how
to be compassionate and humane caregivers operating realistically under the
modern pressures of medicine.52 Medical humanities attempts to cultivate
certain key virtues in and values of medicine, such as altruism, empathy,
compassion, as well as certain qualities of mind by means of various
reflective, interpretive, and reflexive practices.53 Educating more humane
physicians, we further suggest, also means that medical humanities attempts
to provide guides, tools, and venues for self-care.54

Medical Humanities as Recovering a Learned

Profession
In a 1974 JAMA article, Pellegrino, whose path-breaking work we have
referred to above, wrote, “In the growing litany of criticism to which our
profession is increasingly exposed, there is one that in many ways is more
painful than all the rest. It is the assertion that physicians are no longer
humanists and that medicine is no longer a learned profession.”55 He
continued, “The assertion is painful because there is some truth in it.”56
Physicians during the twentieth century became much more technically
competent, but, in many cases, this came at the cost of their interpersonal
skills – the professionalism critique – and at the cost of their broader
education in culture and the arts. According to Pellegrino, “Society has the
right to require that physicians be competent, that they practice with
consideration for the integrity of the person, and that some of them also be
educated men [and women] who can place medicine in its proper relationship
to culture and society.”57 Writing as a physician and for physicians and
medical educators, Pellegrino suggested that medical humanities ought to be,
at least in part, an intellectual pursuit in and of itself. We would reemphasize
our point above, namely, that medical humanities scholars, many of whom
are not physicians, should also pursue intellectual questions simply for their
own sake as well as a means of promoting medicine as a learned profession.

Medical Humanities as Moral Critique and Political

Aspiration
Worthy as it is, the goal of recovering medicine as a learned profession is
fraught with social and political problems. It is one thing to argue that
medical education should involve more than vocational training – that it
should also include critical reflection, the growth of self-knowledge, and
exposure to historical, literary, philosophical, and religious inquiry – but it is
quite another to specify what those materials are and to avoid uncritically
reproducing the tradition of white, male, European, and American privilege.
This challenge is squarely embedded in our textbook, which is necessarily
based on scholarship and primary materials produced largely in this tradition.
We therefore present this introduction to medical humanities fully aware that
we are limited by our own perspectives, expertise, and knowledge, and by
linguistic skills limited to the languages of English and German. We invite
readers and scholars to respond with their own perspectives, interests, and
expertise.
Be that as it may, becoming learned means becoming critical and self-
critical. It means, for example, learning about the shadow side of medical
progress and accomplishment. So in this book, on the one hand, we focus on
medicine’s scientific and technological accomplishments, its highest moral
and professional norms, but, on the other hand, we focus on the unintended
consequences of medical progress, on the human exploitation often involved
in producing medical knowledge, and on biopolitics and the problems
inherent in medical power. Another way of putting this is to say that medical
humanities involves moral critique and political aspiration – that is, medical
humanities is not only a scholarly and educational pursuit but also a moral
and political (though not monolithic or sectarian) enterprise as it aims at goals
such as respect for individuals, protection of the vulnerable, tolerance of
difference, care for those in need, equality of access, and the pursuit of justice
and health in the broadest sense. As noted above, like gender studies (which
developed in response to sexism) or humanistic gerontology (which
developed in response to ageism), medical humanities grew up alongside and
in association with the patient’s rights movements in the 1960s and 1970s. It
is concerned with questions of power and justice, broadly conceived. This
conception of medical humanities attends to political and social structures as
they pertain to medicine, as well as to how medical knowledge is used and
produced, and whose interests it serves. In this sense, then, medical
humanities engages in critical moral inquiry about medicine and it asks what
justice requires.58

Our Definition
Having made some initial comments on the origins, goals, and conceptions of
medical humanities, we offer here our own definition of the field and its
implications for how the book is organized and presented. We define medical
humanities as an inter- and multidisciplinary field that explores contexts,
experiences, and critical and conceptual issues in medicine and health care,
while supporting professional identity formation. Our definition, then, has
four main components:

1. Context;
2. Experience;
3. Conceptual and critical analysis; and
4. Formation.

We do not suggest that every piece of scholarship in medical humanities

attends to all four of these categories; a given piece may focus exclusively
on, say, context. Still, these categories, taken together, enable us to make
sense of various bodies of knowledge that constitute the field. A few words
about each of these categories are in order.

Context
By exploring context we mean using various disciplines, such as history and
anthropology, to understand the cultural and temporal dimensions of
medicine. The questions explored can be economic, social, political, and
cross-cultural in nature. How is, for example, medicine practiced under the
National Health Service in the United Kingdom, and how does that differ
from the social organization of health care in the United States? When was
the Hippocratic Oath developed, and whose interests and purposes did it
serve in ancient Greece? How did medieval Christianity affect European
views of disease? What is Buddhism’s view of suffering, and how does that
affect Buddhists’ ideas about health and disease? In what ways did modern
medical education evolve in the United States and Europe, and what
problems did it entail for student learning?
 By exploring contexts, we also mean paying attention to issues of gender,
race, class, age, and sexuality with regard to medicine, particularly to how
knowledge is produced regarding these categories. What, for example, is the
relationship between sexism and gynecology? In what ways do cultural
assumptions about gender and sexuality literally shape human bodies, as in,
for example, practices related to intersexed infants? How do the economics of
the pharmaceutical industry affect the construction of mental illnesses?
Medical humanities aims to contextualize medical practice, health care, and
the experience of illness by exploring continuity and change over time and by
offering contemporary descriptions and analyses across cultures and
societies.

Experience
By exploring experience we mean using various disciplines, such as literature
and psychology, to understand how it feels to be a patient, a doctor, or a
community affected by an epidemic. These questions are usually local and
personal in nature. What, for example, is it like to suffer lymphoma? What is
it like to live with diabetes? What does a heart attack do to one’s family life,
one’s work life, one’s sex life, and one’s faith life? What is it like to be a
medical student? What is it like to be a woman in medical school? What does
a nurse feel like when treated badly by a physician? What is it like to be an
African American or a Muslim on the faculty of an American medical
school? What is it like to be a white male in these contexts? What is it like to
be dying? What is it like to recover from a given illness? Such experiences
can also be social, communal, or global, such as living with the effects of
climate change or dying during epidemics of the plague, the Spanish Flu, or
HIV/AIDS.
The arts – short stories, poetry, novels, memoirs, sculptures, music,
painting, film, theater, and other forms – can help us address these
“experience-near” questions in concrete and particular ways. These questions
often may have very little to do with decision making in medicine, but they
are essential for educating the emotions and strengthening the capacity to
care and the ability to empathize with those who suffer. Other disciplines and
approaches, such as phenomenology and religious studies, also can shed light
on the experiences of illness, medical education, doctoring, and other forms
of health care. Medical humanities attempts to examine narratives of
medicine and frameworks of meaning in whatever form they may take.

Conceptual and Critical Analysis

By conceptual and critical analysis we mean using various disciplines, but
primarily philosophy, to define and to clarify ideas, terms, and issues related
to medicine. This type of inquiry is often more abstract than scholarship
related to context and experience, and asks questions such as: What is health?
What is disease? Or what is the difference between disease and illness, or
between healing and curing? This line of inquiry also asks teleological
questions about medicine, such as: What are the goals of medicine? The tools
of analytic philosophy can be of great value in clarifying the meaning of
various words and concepts, and the tools of Continental philosophy, too, can
be of great value in examining how medical concepts are related to structures
of power and discipline. Medical humanities aims to examine various ways
of knowing and participates in the conceptual analysis of medical knowledge.
Conceptualization in medical humanities is often intimately linked to
critical analysis. In examining various concepts of disease, for example, we
become aware that many newly named diseases (e.g., erectile dysfunction,
alcoholism, or attention deficient hyperactivity disorder) can be understood
as “normal” human experiences. In bioethics, learning about the principle of
justice can lead one to question the fairness of the allocation of scarce health
care resources in the United States or any other country. If one sees relief of
suffering as the primary goal of medicine, it follows that procedures that
briefly prolong life at the cost of suffering and financial expense will be
called into question.

Formation
By formation we mean kinds of pedagogy, forms of scholarship, and ways of
teaching and learning that cultivate self-awareness and commitment to the
welfare of others. We see the dimension of what is now called “professional
identity formation”59 as a specific contemporary expression of the
educational tradition of humanitas – which, as noted, aims at forming
individuals who personally embody a combination of knowledge,
compassion, and action in the public or professional world – in this case,
medicine and health care. Medical humanities assumes that the practice of
medicine is not, or should not be, merely technical. Physicians are not merely
plumbers of the body; they are, or should be, caring and compassionate
witnesses to the experiences of patients and their significant others and to
their own experiences.
It should be noted that one reason for the emphasis on formation arises
from recent concern about lack of empathy and professionalism in medicine.
These concerns can be intimated by means of the following questions: Why
is it that studies of the empathy of medical students show that their empathy
decreases as they progress through medical school?60 How can this be
understood, and how can it be addressed? How can and do medical students
cultivate a professional identity? In what ways can medical students,
physicians, and others in health care cultivate strategies of resilience? How
can medical students deal with the joys and sorrows of medicine, of
witnessing a baby open her eyes for the first time or of witnessing an older
man close his eyes for the last time?
It should also be noted that the language of formation derives from the
context of theological education, where students are formed to be ministers in
a particular religious tradition or denomination.61 Formation in secular
medical schools or for other students in medical humanities looks different –
doctors are not pastors or priests. Nevertheless, their professional identity and
personality depends in no small way on their emotional, moral, and spiritual
(by “spiritual” we mean the dimension of the self which is linked to an
individual’s highest values or source of meaning) growth. We suggest that
the educational materials that students engage should form them to aspire to
become persons who attend to the suffering as well as the flourishing of
patients and others.

The Layout of This Book

Our book has four main sections: History and Medicine; Literature, the Arts,
and Medicine; Philosophy and Medicine; and Religion and Medicine. While
the issues and questions covered in this book reach across formal disciplinary
boundaries, we decided to organize the book according to these four
disciplinary categories rather than by a list of topics and problems. These
ways of knowing help us focus on the topics at hand – what we want to
know, what we need to know, and what is worth knowing – and they serve as
rough guides for organizing contemporary scholarship on inherently
interdisciplinary topics and for presenting it in a clear and compelling way.
The book can, of course, be read in whatever sequence that readers, teachers,
and students find useful.
We conceptualize bioethics as a part of the larger project of medical
humanities, even as we realize that, under this conception, scholarship in
bioethics constitutes the majority of work in medical humanities. Such topics
include the ethics of abortion, end-of-life care, futility, organ transplantation,
the allocation of resources, confidentiality, and capacity, to name only a few.
Since there are many books and textbooks on bioethics, we have chosen to
weave bioethics throughout the text and emphasize, instead, other topics in
medical humanities.
This book, as noted, has four sections – a word about each. The History
and Medicine section includes such essential topics as the doctor-patient
relationship, the history of disease, the history of technology, the history of
medical education, the health of populations, and the history of death and
dying. The Literature, the Arts, and Medicine section draws heavily on major
works, themes, and methods in the fields of literature and the arts. Attention
is given to narrative medicine as well as film criticism and the visual arts.
This section uses various genres to present, evoke, narrate, and interpret
experiences such as suffering, healing, aging, dying, doctoring, and being a
student. The Philosophy and Medicine section uses various tools and
perspectives in philosophy to clarify definitions and goals of medicine. This
section works with classic categories in philosophy – such as ontology,
epistemology, and ethics – as they pertain to medicine. Topics include
definitions of disease and of health, the goals of medicine and the role of
technology, philosophy and bioethics, and medicine and power. The Religion
and Medicine section draws on religious studies and theology to address
existential and spiritual issues as well as practical and cultural issues in
medicine. Topics include religion and health, religion and bioethics, the
relationship between religious experience and the experience of illness,
religious and cultural issues in patient care, and suffering and hope.

The Central Argument of the Book

While the book is a textbook and its chief aim is to provide an overview of
and introduction to medical humanities, we nevertheless do have a point of
view. Put simply, it is this: Medical practice and medical education today are
the victims of their own success. The very science and technology that have
brought enormous advances in curing disease, relieving suffering, and
extending longevity have also outstripped medicine’s moral bearings and
overwhelmed the human dimensions of caring and learning. Medical
humanities attempts to restore the balance, to help re-humanize medicine. But
(and this is one of the original contributions of this book) it is not just patients
who suffer from the dehumanization of medicine. Under today’s stressful
conditions of practice, physicians, nurses, allied health professionals,
biomedical scientists, and students all find themselves at risk for becoming
alienated or separated from the ideals that drew them to health care in the first
place. These conditions lead to high rates of burnout, depression, impairment,
and even suicide. Hence the re-humanization of medicine involves
enhancing, restoring, and attending to the humanity of students and
caregivers as well as of patients.62
Medical Humanities: An Introduction addresses the dehumanization of
medical education and practice in two ways: First, it focuses on the
experiences of medical students and of physicians by using materials from
memoir and social research to film and literature. Second, it actively involves
students and encourages them to generate their own ideas and contributions.
Each chapter, therefore, contains visual images, case studies, and exercises
designed to engage students actively in their own intellectual, moral,
emotional, and existential learning – that is, their own identity formation. We
hope that the intellectual discipline involved in analyzing, interpreting,
contextualizing, imagining, writing, and narrating will help strengthen
students’ capacities for self-understanding, caring, empathizing, attending to,
and deliberating. As noted above, one aim of the book is to teach students the
content of medical humanities in order to help them learn and develop habits
of mind and heart – “professional identity formation” – demanded in today’s
highly scientific, technological, impersonal, and stressful world of health
care. The other more traditional aim is simply to convey up-to-date
knowledge about medical humanities. Both goals are appropriate for
undergraduate students as well as students in professional schools and
practicing physicians. And both goals will help students ask the most
important questions, those Dr. Hsi wished his physicians would have asked.
Exercises for Critical Thinking and Character
Formation
Questions for Discussion
1. What interests you about medical humanities?
2. How would you define medical humanities?
3. What is the purpose of medical humanities?
4. What topics and ways of knowing would you like to pursue in
medical humanities?

Suggested Writing Exercise

This exercise will take fifteen minutes. Write, without any concern for style
or grammar, about when you first realized that you had a strong interest in
medicine. If you decided that you would one day go to medical school, write
about when you came to this decision and what you felt like. If you are
unsure about a life in medicine, write about this uncertainty. What attracts
you to medicine? What makes you ambivalent about medicine? If you do not
plan on going to medical school, what interests you about medicine or about
health care?

Suggested Viewing
The Doctor (1991)
Commentary: http://litmed.med.nyu.edu/Annotation?
action=view&annid=10006

Suggested Listening
Yale University Medical School Article on Music and Medicine, with Audio
Links: http://yalemedicine.yale.edu/ym_ws98/music/music_01.html

Further Reading
 Jerome Groopman, How Doctors Think
Sandeep Jauhar, Intern
Danielle Ofri, What Doctors Feel
Emily Transue, On Call

Advanced Reading
Gary, Belkin. “Moving Beyond Bioethics: History and the Search for
Medical Humanism.” Perspectives in Biology and Medicine 47 (2004):
372–385.
Rafael, Campo. “The Medical Humanities, for Lack of a Better Term.”
JAMA 294 (2005): 1009–1011.
Ronald A. Carson, Chester R. Burns, and Thomas R. Cole, eds.
Practicing the Medical Humanities: Engaging Physicians and Patients.
Francis, Peabody. “The Care of the Patient.” JAMA 88 (1927): 877–882.
Edmund D. Pellegrino. “Educating the Humanist Physician.” JAMA 227
(1974): 1288–1294.
Johanna, Shapiro, Jack Coulehan, Delese Wear, and Martha Montello.
“Medical Humanities and Their Discontents: Definitions, Critiques, and
Implications.” Academic Medicine 84 (2009): 192–198.

Online Resources
Bio-Ethics Bites
http://podcasts.ox.ac.uk/series/bio-ethics-bites
Blog Post by Johanna Shapiro, “Toward the Clinical Humanities”
http://humanizingmedicine.org/toward-the-clinical-humanities-how-
literature-and-the-arts-can-help-shape-humanism-and-professionalism-
in-medical-education/
The Healing Muse
www.thehealingmuse.org
The International Health Humanities Network
www.healthhumanities.org
The New York Times: Well Blog
http://well.blogs.nytimes.com/
New York University School of Medicine – Literature, Arts, and
 Medicine Database
http://litmed.med.nyu.edu/Main?action=new

Journals
The Art of Medicine Section in The Lancet
Journal of Medical Humanities
Medical Humanities
Medical Humanities Review, 1982–2005
Part I History and Medicine
 Part Overview
History and Medicine
The history of medicine is the oldest discipline of medical humanities.
Actually, medical history, whose origins lie in the late nineteenth century,
long predates and helps us to understand medical humanities, which is barely
forty years old. At the turn of the twentieth century, distinguished American
male physicians and educators first turned to history as a means of
humanizing medicine. Although there are now serious doubts, debates, and
visions, and the field has grown more diverse, this mission in medical
education has remained remarkably stable.1 With the recent rise, however, of
medical humanities and bioethics, and the professionalization of the field of
the history of medicine, the influence of history in medical education has
been overshadowed by ethics, literature, the social sciences, and to a growing
extent, religion/religious studies and media studies. One counterbalancing
trend has been public policy historians such as Susan Reverby (1946–),
David (1937–) and Sheila Rothman (1939–), David Rosner (1947–), Gerald
Markowitz (1944–), and Howard Markel who have been active in developing
programs in history, ethics, and public health, housed outside of medical
schools.2 Another is the testimony of physicians whose lives and work have
been shaped by their knowledge of history.3 History is an exciting and
essential way of understanding medicine and health care, which are never
static but rather constantly changing and evolving.
History offers perspectives on our present moment. It is where we turn to
understand where we have been, where we might be going, and why. It is a
field that identifies the guiding values, social contexts, power relationships,
and contested cultural meanings that have formed the world we live in. In this
overview of part one, we look briefly at the history of the history of medicine
in the United States; identify the field’s major scholarly trends and some of
its most prominent authors; and summarize the basic themes and topics
contained in the following six chapters.
As we saw in the Introduction, John Shaw Billings (1838–1913) and
William Osler (1849–1919) of the new Johns Hopkins Medical School were
among the first to articulate concern about the human costs of the new
scientific medicine that they championed and led. As early as the 1890s they
saw that biomedicine by itself was incapable of producing well-rounded and
humane physicians who practiced the art as well as the science of medicine.
They worried that specialization, excessive commercialization, and scientific
reductionism were leading to a cultural impoverishment and undermining
medicine as a genuinely learned profession. Osler, who helped found the
Johns Hopkins Hospital Historical Club in 1890, embodied the both the new
science and the classical humanist tradition in medicine and tried to
harmonize them in his 1919 address, “The Old Humanities and the New
Science.” Osler was well versed in the ancient Greek and Latin authors, and
he turned to history as a moral compass as he used medico-historical cases in
his clinical instruction and pointed “to the great physicians of the past” in
order to inspire and to exemplify professionalism. Osler called for veneration
and engagement with the classical texts in science and medicine. He
encouraged the formation of medical history clubs and also of personal book
collections, library archives for rare book collections, and the cultivation of a
literary humanism marked by gentlemanly honor and the assumption of
moral wisdom.
The first professorship in the history of medicine in the United States was
established at Johns Hopkins in 1929. At its dedication, the neurosurgeon
Harvey Cushing (1869–1939) descried the scattered and divided nature of
specialized medicine. Cushing envisioned medical history and historical
libraries as a means of unifying and inspiring all elements of “our great
profession.”4 William Welch (1850–1934), the first dean of the medical
school and proponent of experimental and laboratory medicine, claimed that
history of medicine was “the one subject of humanistic study properly falling
within the scope of medical teaching.”5 Abraham Flexner (1866–1959), the
prominent reformer of medical education, also worried about the loss of
cultural values and saw medical history as a counterweight. By 1937, almost
three-fourths of U.S. medical schools offered instruction in the history of
medicine. It was a style of history taught by men who were not trained in
history, focusing on classic medical texts, great male physicians, and the
cultivation of humane clinical care.
In the 1930s and 40s, physician-historians such as Henry Sigerist (1891–
1957),6 Erwin Ackerknecht (1906–1988),7 and George Rosen (1910–1977)8
were among the first to write serious and scholarly histories of medicine,
initiating a new brand of medical history focusing on the social rather than
the individual dimensions of medicine. Rather than engaging the classics,
cultivating gentlemanly learning and the individual doctor-patient
relationship, these historians focused on public health, health care systems,
and the social forces affecting health. As John Harley Warner explains,
“Sigerist grew impatient with American physicians who cultivated a
romanticized image of the doctor rather than assuming responsibility for
bringing the fruits of scientific medicine to the entire population.”9 A
contemporary physician-historian in this tradition who writes on issues of
public health is Howard Markel.10
By the 1960s and 70s, amidst a larger cultural critique of medical power
and authority, history again emerged as an antidote to the dehumanization of
medicine. This time, the Oslerian style of medical humanism was itself a
historical tradition, now reiterated by physicians such as Edmund Pellegrino
(1920–2013). While Pellegrino critiqued the term “humanism” for its
vagueness, he acknowledged that it still carried enough appeal to help attract
support for the teaching of human values and the art of medicine.11 History
was now only one of several disciplines engaged in this scholarly and
educational work. In the 1980s, the terms “medical humanities” and
“bioethics” appeared in academic medical journals. And non-physician
scholars specializing in literature, philosophy, and the social sciences as well
as history were hired onto medical faculties.
In this context, a new generation, trained as social historians and not as
physicians, wrote from a perspective that was sharply critical of the health
care system, the authority of physicians, and the biomedical establishment.
Pioneered by Susan Reverby and David Rosner,12 the new social history of
medicine established itself within traditional history departments and in
medical schools with its quest to move, “beyond the great doctors” and
beyond the great books of medicine to explore issues of power, race, class,
and sex in the delivery of health care.
Recently, dually trained physician-historians such as Joel Howell, Kenneth
Ludmerer (1947–), Howard Markel, and Robert Martinsen (1947–2013),
have followed in the footsteps of Sigerist, Rosen, and Ackerknecht. However,
the broader shift in the field has been a growing awareness of the need for
collaboration between physicians and historians. As Howard Kushner puts it,
“If a history of medicine uninformed by biomedical knowledge is untenable,
then medical research uninformed by historical context is incomplete.”13 The
following chapters provide readers with information about major historical
developments in six topic areas:

The doctor-patient relationship;

Disease;
Medical education;
Medical technology;
The health of populations; and
Death and dying.

The information provided under these rubrics is “true” – that is, it is based on
facts that historians have established and agreed upon. Empirical facts,
however, always stand in need of interpretation. For example, we know
roughly when the Hippocratic Oath was written and what its stated values
are. But what are we to make of this? Do we emphasize that the Oath is the
source of many of the essential professional values of medicine? Do we
acknowledge that it is unclear whether most ancient physicians read or even
knew about the Oath? Do we emphasize that it was taken by a small number
of men who entered into a closed, almost familial guild? To take another
example, we know that the invention of the stethoscope in 1817 marked a
powerful diagnostic advance by making heart sounds more audible and
precise. But it also had the effect of putting an instrument between the
physician and the patient, which initiated a pattern whereby technological
advances tended to undermine the personal relationship between doctor and
patient. And for a final example, take the discoveries of bacteriology in the
late nineteenth century, when physicians and scientists first discovered the
microorganisms that are the causal agents of infectious diseases such as
tuberculosis and cholera. Do we emphasize the accomplishments of the great
men who established scientific laboratories and made these discoveries? Or
do we emphasize that these diseases flourished in crowded urban conditions
of poor hygiene, sanitation, and nutrition and could sometimes be prevented
or controlled with improved diet and public health measures? In making
interpretive choices, we have been mindful of various perspectives.
 Condensing such a vast field of scholarship is a daunting task. Omissions
or mistakes are inevitable, and we apologize in advance for both. In addition
to choosing the six topics listed above, we have limited our coverage
primarily to western Europe and the United States. In general, each topic is
organized according to the following periods: antiquity, medieval, early
modern, Enlightenment, modern medicine, and contemporary medicine. Our
chapters are necessarily based on syntheses of what other historians have
written.
Very few contemporary scholars have attempted to write about the history
of medicine as a whole. One exception is Roy Porter’s (1946–2002)
monumental The Greatest Benefit to Mankind.14 Another is Jacalyn Duffin’s
(1950–) History of Medicine: Second edition, which she refers to as
scandalously short.15 The work of Charles Rosenberg16 (1936–) is so
extensive and ranges across so many topics that Rosenberg might almost be
considered to have covered the history of American medicine as a whole.
Other comprehensive works are written by multiple scholars: for example,
Mark Jackson’s edited volume, The Oxford Handbook of the History of
Medicine.17 By and large, we have relied on seminal figures who have
written on the topics of interest to us: e.g., Robert Baker (1937–) and
Laurence McCullough’s (1947–) edited Cambridge World History of Medical
Ethics;18 Gunther Risse19 (1932–) and Charles Rosenberg20 on the history of
the hospital; Ellen More (1946–) on women in medicine;21 Thomas Bonner22
(1923–2003) and Kenneth Ludmerer on medical education;23 Stanley Reiser
(1938–) on medical technology;24 John Harley Warner on therapeutics;25
Paul Starr (1949–) on the rise of corporate medicine;26 David Rothman on the
recent history of bioethics;27 William O’Neil28 (1917–) and J. N. Hays29
(1938–) on epidemic disease; Dorothy Porter on public health;30 and
Phillippe Ariès31 (1914–1984) and Emily Abel32 (1942–) on death and dying.
In attempting to make sense of historical developments in medicine, we
have struck a balance between two primary interpretive frameworks: history
as appreciation of scientific and technological progress; and history as a
critique of self-interest, power, inequality, and the social determinants of
health. Both frameworks support the educational goals of cultivating a
humanistic sensibility and developing critical thinking. We encourage readers
to challenge our interpretations and develop new ones as a means of actively
engaging in the production of historical knowledge.
 1 The Doctor-Patient Relationship
One of the essential qualities of the clinician is interest in humanity, for
the secret of care of the patient is in caring for the patient.
Francis Weld Peabody1

Abstract
This chapter explores the history of the doctor-patient relationship in
the West. Beginning with a discussion of how this relationship was
conceived in antiquity, it examines how the Hippocratic ideal became
associated with the Christian duty to care for the sick and needy; how
the beliefs of antiquity were questioned by Renaissance physicians
who wanted to “see for themselves”; how professional ethics based
on virtue arose in the eighteenth century in response to increased
competition between practitioners; and how the modern ideal of the
doctor-patient relationship based on a personal connection, careful
physical examination, and trust arose in the late nineteenth century.
Then, with a focus on recent cultural and structural challenges to this
modern model, it considers how we might reconstruct the doctor-
patient relationship to address recent challenges, such as patients’
skepticism about doctors’ genuine concern for them as people and
doctors’ concern with patients’ lack of compliance and growing
challenges to their authority.

Introduction
There has, of course, never been a single or monolithic “doctor-patient”
relationship. Relationships between doctors and patients – even as they have
changed over time – have always varied depending on the social class, race,
and gender of both patients and doctors. From antiquity to contemporary
medicine, relations between doctors and patients have also been affected by
religious authority and belief, by competition in the health care marketplace,
and by science and technology.
In light of contemporary concerns about the goals of medicine and quality
of care, we focus here on ideals, particularly on the moral norms and ethical
frameworks that have guided the doctor-patient relationship. From the
medical morality of the Hippocratic tradition to the bioethics revolution of
the 1970s, medicine has been characterized by the desire for healing and
caring. In the second half of the nineteenth century, this desire took a modern
form: the widely shared ideal of a strong, personal, trusting relationship
between patient and doctor. Since the 1960s, the modern model of the doctor-
patient relationship has been culturally challenged and structurally weakened,
creating discontent for both patients and doctors. In the midst of health care
reform and escalating costs in the United States, the reconstruction of the
doctor-patient relationship remains a work in progress.

Doctors in Antiquity
Historical knowledge of Greek medicine begins with the appearance of
ancient texts written by doctors who first supported themselves with fees
earned in Athens during the time of Plato (427–347 BCE). There were no
schools, no licenses, and no state recognition or monopoly. Instead, doctors
plied their trade in the marketplace alongside exorcists, bonesetters, priests,
gymnasts, and others competing for attention and income. Medicine however,
was a male monopoly, and doctors were educated through a loose
apprenticeship in which a student became a virtual member of his teacher’s
family.
Hippocrates (c. 460–377 BCE) stands at the pinnacle of ancient Greek
medicine. In his view, medical knowledge should be grounded in
observation, experience, and reason rather than in supernatural explanations
of health and disease. The central notion in the Hippocratic Corpus – a
collection of about sixty diverse texts that were actually written by others – is
that health is equilibrium and disease is disequilibrium. Achieving health,
then, meant restoring balance within the body and between the body and the
environment. In spite of its secular outlook, Hippocratic medicine lived
comfortably in the world of the Greek gods – including Aesclepius, the god
whose rituals of healing are discussed in the next chapter.
The ancients clearly understood the healing power of the doctor-patient
relationship. “Where there is love of man, there is also love of the art [of
medicine],” noted one Hippocratic text: “Some patients [achieve] ... their
health simply through contentment with the goodness of the physician.”2
Hippocratic medicine also stressed that the doctor should always act in the
best interests of the patient – what contemporary bioethics now calls the
principle of beneficence3 – and that the “good” patient should honor the
physician and always follow his instructions. Modern notions of patient
choice or autonomy would have made no sense inside the paternalistic world
of the Hippocratics. Nor was there any awareness that the interests and values
of the doctor and patient might diverge, since both wanted the same thing –
recovery and cure.
However, not all doctor-patient relationships were equivalent. In ancient
Athens, the medical treatment of slaves was quick and tyrannical; the purpose
of care was to get them back to work. According to one Hippocratic text,
some citizens could not be trusted to follow a physician’s instructions and,
thus, should be given an “emetic or a purge or cautery or the knife.”4 Free
and rich patients were given time and attention – but not always the truth.
Rather than offering their honest opinion, physicians were instructed to
“promise to cure what is curable and to cure what is incurable.”5
The Hippocratic Oath, perhaps the most famous text in the history of
medicine, articulates moral values that continue to guide medicine and health
care today. Some of the Oath’s stipulations – the prohibition of drugs for
abortion or suicide, for instance – remain controversial. Others – the
prohibition of surgery and the promise of care for the teacher and his family –
have been relegated to the dustbin of history. Despite its endurance and fame,
the Hippocratic Oath emerged in a culture profoundly different from our own
– a culture that accepted slavery and the subordination of women with no
moral qualms. We still do not know who wrote the Oath, whether
Hippocrates himself ever saw it, or whether most ancient physicians agreed
with it, lived by it, or even knew about it.6 Nevertheless, the Hippocratic
Oath remains the historical lodestar for medicine’s basic professional values.

Case Study: The Hippocratic Oath

The Hippocratic Oath, perhaps the most famous text in the history of medicine,
articulates moral values that continue to guide medicine and health care today. The Oath
discusses the privacy and confidentiality of patients, the primacy of patients’ welfare,
and a prohibition of sexual contact with or exploitation of patients.

“I swear by Apollo the physician, and Asclepius, and Hygieia and Panacea and all
the gods and goddesses as my witnesses, that, according to my ability and
judgment, I will keep this Oath and this contract:
To hold him who taught me this art equally dear to me as my parents, to be a
partner in life with him, and to fulfill his needs when required; to look upon his
offspring as equals to my own siblings, and to teach them this art, if they shall wish
to learn it, without fee or contract; and that by the set rules, lectures, and every
other mode of instruction, I will impart a knowledge of the art to my own sons, and
those of my teachers, and to students bound by this contract and having sworn this
Oath to the law of medicine, but to no others.
I will use those dietary regimens which will benefit my patients according to my
greatest ability and judgment, and I will do no harm or injustice to them.
I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan;
and similarly I will not give a woman a pessary to cause an abortion.
In purity and according to divine law will I carry out my life and my art.
I will not use the knife, even upon those suffering from stones, but I will leave this
to those who are trained in this craft.
Into whatever homes I go, I will enter them for the benefit of the sick, avoiding any
voluntary act of impropriety or corruption, including the seduction of women or
men, whether they are free men or slaves.
Whatever I see or hear in the lives of my patients, whether in connection with my
professional practice or not, which ought not to be spoken of outside, I will keep
secret, as considering all such things to be private.
So long as I maintain this Oath faithfully and without corruption, may it be granted
to me to partake of life fully and the practice of my art, gaining the respect of all
men for all time. However, should I transgress this Oath and violate it, may the
opposite be my fate.”7

1. What values are embedded in the Oath?

2. Which values remain important today?
3. Which values are controversial? Which do you accept or reject – and why?
4. What aspects of the Oath are no longer relevant to clinical practice today?
 In the Roman era, Galen (c. 131–201 CE) adopted and revised the
Hippocratic legacy, creating the foundations of a learned medicine that would
flourish for more than a thousand years. The 350 texts attributed to Galen
reveal a vast erudition ranging from discussions of bloodletting to the soul.
Like Hippocrates, Galen believed the ideal physician would act in the best
interest of the patient. He did not agree, however, that the physician should
conceal the truth from his patients. Noticing how even the best physicians
harmed patients with their treatment, Galen coined the maxim “Above all do
no harm” and elevated it to a measure for evaluating treatment.8

Medieval Religious Norms: The Responsibility and

Authority of Doctors
By the fifth century, when Christianity was officially sanctioned by the
Roman Empire, the tradition of Hippocratic and Galenic medicine – which
had previously been intertwined with the cult of the healing god Aesclepius –
was adapted into a monotheistic framework. In church-dominated medieval
communities, salvation of the soul took precedence over the health of the
body. Yet, although the priest was elevated over the doctor, religion and
medicine enjoyed a relatively peaceful coexistence.9 The New Testament was
in no way hostile to secular healing: According to the Gospels, Jesus
performed some thirty-five miracles and his disciple, Luke, was called “the
doctor.”10 The church fathers thus adopted Hippocratic ideals even as they
transformed the classical virtues of compassion and philanthropy into the
ethical obligations of Christian physicians.11
Perhaps the most important medical legacy of early Christianity is the
extension of love – agape – into a communal obligation to care for the sick
and the needy. The priority of caring over curing transformed (at least in
theory) the social position of those with certain diseases (e.g., leprosy and
mental illness) from stigmatized, outcast sinners into vulnerable souls in need
of help and attention. This ethos also resulted in church-sponsored
institutions – the first hospitals – that served the poor, the needy, and the sick.
Medical practitioners in the Middle Ages fell into two basic groups:
tradespeople and clerical (or elite) practitioners. Tradespeople sold drugs and
their services like any other trade. They solicited patients on the streets or
worked in monasteries, municipalities, or royal households, and received
cash, clothing, gifts, or an annuity for their services. Clerical practitioners
were paid by the church or by powerful patrons to dispense healing just as
they dispensed the sacraments – as a charitable duty. Practitioners, then, came
from various walks of life and were engaged in many forms of work.
Medieval England, for example, was filled with brewers who practiced
surgery, abbots who delivered babies, friars who penned medical books, and
even a chancellor of the exchequer who doctored the king.12
Because they were excluded from the university and the clergy, women
could not practice elite medicine. They were, however, allowed to function in
the “middling” levels of society where, like other tradeswomen, they could
practice without interference from the church. Female midwives presided
over childbirth along with neighbors and relatives who supported the mother.
Other female healers learned their craft from a male member of their family.
The Benedictine mystic Hildegaard of Bingen (1098–1179) was a rarity who,
in her position as abbess of Rupertsberg, practiced medicine and wrote
medical texts.13

Medicine and the Renaissance

During the fourteenth century, a cultural and intellectual rebirth spread across
Europe. Beginning in Italian cities, especially Florence, writers and
philosophers celebrated the classical traditions of Greek and Roman culture.
This revival of the arts and of humanistic learning aimed to purify European
culture by returning to its origins. Humanist scholars provided new Greek
translations of classical medical texts, corrected Arabic and medieval Latin
errors, and made more texts available to more readers – a process facilitated
by the invention of the printing press around 1440. The humanist scholar
Desiderius Erasmus (1466–1536), for example, introduced a new edition of
Galen’s work. Although personally skeptical of doctors, Erasmus and other
humanists promoted medical learning that was rooted not only in classical
texts but also in the physical body and the material world.
In translating Greek, Roman, and biblical texts into the vernacular,
Erasmus, Martin Luther (1483–1546), and others did more than merely
recover texts from the classical tradition. They also insisted that any literate
person could read and interpret for themselves. The same impulse toward
individually validated knowledge can be seen in the term autopsy (seeing for
oneself), which privileges observation over authority in the search for truth.
As laypeople took this message to heart, self-diagnosis and self-therapy grew
popular in Renaissance culture. Word of a successful healer spread quickly
through a personal network of kin, friends, and neighbors. People who called
on physicians were also quite ready to switch to alternative healers – or to
trust their own judgment – if the official treatment did not work. “I have been
aggravated by a bad disease for about three years,” one Italian woman said in
1698. “I sought treatment from several people, including a certain Anna, later
decided to stay away from her, and I went instead to the barber in San
Mamol.... Thereafter I have treated myself.”14
Seeing for oneself applied to scientific knowledge as well as medical
treatment and self-care. Galenic or Hippocratic texts – both of which had
taken on a dogmatic authority – were no longer immune from critique.
Through careful observation and dissection, for example, Andreas Vesalius
(1514–1564) demonstrated that Galen’s anatomical findings were taken from
animal dissections – especially apes – rather than from human bodies. By
relying on these dissections, Galen had, in Vesalius’s opinion, committed
anatomical errors in his descriptions of muscles, bones, and internal organs.15
Historical change is never linear, however, and there is no single march
toward truth. In spite of Vesalius’s findings, Galenism was so entrenched that
some scholars refused to accept the possibility that their great master could be
wrong: one declared that, if there was an error in Galen’s texts, then the fault
lay with the corpse and not with Galen.16

The Enlightenment and the Origins of Modern

Medical Ethics
Ironically, the birth of modern medical ethics in eighteenth-century Britain
resulted not from pure idealism but from intense competition between
practitioners.17 Those who were sick had many reasons to doubt both the
competence and the ethics of British medical practitioners. Medical colleges
often sold degrees to anyone willing to pay. Without medical societies or
licensing boards, people simply declared themselves “regular” physicians.
Unrestrained by contemporary notions of informed consent or autonomy,
professors and students used indigent and working-class patients as mere
props for teaching or for scientific experiments. Infirmary professors
commonly advanced their careers and doctors pursued their economic self-
interest at the expense of patients’ welfare.18
In response, the medical faculty at the University of Edinburgh formulated
a new ideal for the well-educated physician: caring for what would later be
called “the whole person.” John Gregory (1724–1773) transformed
professional ethics from an older ethos based on gentlemanly honor to a
modern medical ethics based on virtue. Gregory and his Edinburgh
colleagues also stressed that scientific practice was a moral obligation.
Between 1731 and 1867, all medical students signed a revised version of the
Hippocratic Oath, which required physicians to:

... practice physic cautiously, chastely and honourably, and faithfully to

procure all things conducive to the health of the bodies of the sick, and
lastly, never, without great cause, to divulge anything that ought to be
concealed, which may be heard or seen during professional attendance.
To this oath let the Deity be my witness.19

Gregory’s medical lectures, which were rapidly translated into Spanish,

French, Italian, and German, also shaped English physician Thomas
Percival’s (1740–1804) Medical Ethics (1803), which marked the first time
that term appeared in the English language. Percival worked at the
Manchester Infirmary where he developed a code of conduct to reduce
conflict between warring physicians. His writings revolutionized medical
morality and anticipated the framework for modern Anglo-American
professional ethics – in particular, the view that the physician is obligated to
respect the “feelings and emotions” of patients, including the choice to refuse
treatment.20
In 1847, the year in which it was founded, the American Medical
Association adopted a Code of Ethics based largely on Percival’s writings.
The AMA Code was a mixture of self-interest and altruism. Members agreed
not to advertise, sell, or prescribe secret remedies and not to consult with
“irregular” physicians – defined as persons whose practice was based on
dogma rather than genuine medical knowledge. The Code also obligated
physicians to treat patients with attention, steadiness, humanity, delicacy, and
equality. Physicians were enjoined to practice confidentiality and were
prohibited from performing abortions. They were not to abandon dying
patients, and – in a new moral norm – patients were not to abandon their
physicians without giving “reasons for so doing.” Finally, members were
obligated to care “cheerfully and freely” for indigent patients and, in times of
epidemic disease, work to relieve suffering – even at risk to their own lives.21
Historians have shown that the ideals of the AMA Code of Ethics were
sometimes honored in principle rather than in practice, which helps explain
the popularity of alternative medicine, home remedies, and the large market
for patent medicines in the nineteenth century. (It is safe to assume that
unethical practices would not have been prohibited if they were rare.)
Nevertheless, these norms – amalgamated from the Hippocratic, Jewish, and
Christian traditions as well as from Gregory, Percival, and nineteenth-century
American medicine – provided essential professional and ethical standards
for the doctor-patient relationship. This framework remained intact until the
1970s when the bioethics revolution emphasized the ethical and legal rights
of autonomous patients.22

Triumphs and Tribulations: The Modern Doctor-

Patient Relationship
Throughout most of the nineteenth century, sick people only sought help for
serious problems such as coughing up blood, a bowel obstruction, broken
bones, or disabling symptoms of trauma. By the later part of the century,
patients went to physicians for a wider range of ailments with less severe
symptoms: colds, bruises, cuts, or skin problems. White, affluent urban
dwellers – especially women and their children – increasingly submitted to
the care and authority of white male physicians.23 Since a doctor’s livelihood
depended on fees paid for his services he was under pressure to satisfy the
desires and expectations of patients – not always an easy task among the
well-to-do. As George Bernard Shaw (1856–1950) put it sardonically in The
Doctor’s Dilemma (1906): “The doctor who has to live by pleasing his
patients in competition with everybody who has walked the hospitals, scraped
through the examinations and bought a brass plate, soon finds himself
prescribing water to teetotalers and brandy or champagne jelly to drunkards;
beefsteaks and stout in one house, and ‘uric acid free’ vegetarian diet over the
way.”24
The practices of university-trained doctors gradually spread from well-to-
do urban dwellers to other segments of the population.25 Although many
early twentieth-century patients visited doctors in their offices, house calls
predominated. The “modern” doctor was above all a generalist, a family
doctor. When a middle-class family member was sick, the doctor traveled to
the patient’s home on horseback, in a horse-drawn carriage, or by
automobile. Relationships between doctors and patients were usually based in
local communities and built up over many years. They were face to face,
entailed a careful physical examination, and, at least ideally, based on trust.
Patients did not expect to be cured, but they did expect to be cared for and
comforted. Luke Fildes’s (1843–1927) famous painting The Doctor (1891)
offers an idealized image of the doctor that appeared at the end of the
nineteenth century.26 (See Figure 1.)

Figure 1. The Doctor, exhibited 1891, Sir Luke Fildes 1843–1927. Presented by Sir
Henry Tate 1894. © Tate, London 2013.
 What state of mind does the doctor’s pose convey? Consider the child’s parents in the
dark back corner. What does the mother’s pose convey? Put your head down on your
desk and clasp your hands as she has. Can you imagine what emotions she might be
feeling?
Every work of visual art makes use of composition, lighting, and form to engage the
viewer. For example, is it significant that an oil lamp throws light on the doctor’s silk
hat, frock coat, and wing collar while daylight illuminates the birdcage, the flowers on
the windowsill, and the parents of the child patient? Notice the two chairs that the child
is lying across. One is elegant with expressive curves and carving; the other is plain and
common. What story do they tell? Why would the artist include them?
The Doctor, painted by the British artist Sir Luke Fildes, was exhibited by the Tate
Gallery in 1891. Half a century later, in 1947, the American Medical Association used
the painting in a misleading campaign against President Harry Truman’s call for national
health insurance. The AMA campaign literature claimed that “voluntary” health
insurance would “Keep Politics Out of This Picture.” Can you relate this 1940s debate to
the opponents of the Affordable Care Act of 2010 who claimed that “Obamacare” would
not let you choose your own doctor? Does The Doctor represent a typical doctor-patient
encounter in the United States shortly after the Second World War?
The painting is now in the collection of the Tate Gallery, London. For more
information visit: www.tate.org.uk. Look closely at the reproductions of works of art in
this book and ask questions about them. Examine works of art wherever you encounter
them.

What actually happened during these doctor-patient encounters? At its best,

the most striking feature of this relationship, from the patient’s perspective,
was its familial quality. One elderly woman from Boston declared that, after
seeing her physician throughout her adult life, “he was like a father to me.”27
Indeed, this man had been her parents’ doctor, then her doctor as a child, and
he continued to treat her into adulthood. In another woman’s experience,
doctors “came to the home with a little black bag and they sat by your
bedside. And they knew your mother and father. They called them by their
first name.”28 Such characterizations indicate the deep sense of kinship that –
at its best – many patients felt with their doctors.
Physicians, too, left behind some interesting anecdotes.29 In his Horse and
Buggy Doctor (1938), American physician Arthur Hertzler (1870–1946)
recalls one instance of old-fashioned surgical heroism. He had driven three
hours to attend to a boy suffering from empyema (pus in the lungs):

Grabbing a scalpel I made an incision in his chest with one stab – he was
 too near death to require an anesthetic. As the knife penetrated his chest,
a stream of pus the size of a finger spurted out, striking me under the
chin and drenching me. After placing a drain in the opening, I wrapped a
blanket around my pus-soaked body and spent another three hours
reaching home.30

This account offers a glimpse of the sometimes gruesome and imprecise

nature of patient care. Hertzler himself admitted that “I can scarcely think of
a single disease that doctors actually cured during those years ... [all that
could be done was] to relieve suffering, set bones, sew up cuts and open boils
on small boys.”31 Indeed, despite scientific and technological advances,
doctors remained powerless against many lethal infectious diseases such as
tuberculosis, diphtheria, meningitis, and scarlet fever until the 1940s and
1950s.
The major advances in clinical medicine occurred in rapidly changing
urban hospitals, whose numbers grew from fewer than 200 in 1873 to almost
5,000 in 1923.32 While a nineteenth-century physician could spend his entire
career without stepping foot in a hospital, no physician after 1925 would
graduate from medical school without substantial hospital training. Thanks to
new methods of business administration, increasingly effective surgery, new
techniques of antisepsis, scientific laboratories, trained nurses, and
scientifically educated physicians, the hospital emerged as an essential
institution in urban American life.33 Surgeons, no longer relegated to a lower
status by their traditional physician colleagues, now commanded their own
separate operating rooms, performing procedures on as many as 50 percent of
all hospital patients.34 Hospitals, like orphanages and old-age homes, had
traditionally been designed for long-term care of the poor and dependent. In
contrast, the modern hospital increasingly treated paying patients who
expected to leave the hospital in better shape than when they entered it.
Some doctors were able to move between the domestic world of
nineteenth-century private practice and the rapidly growing medical realm of
the twentieth century. Physician Richard Cabot (1868–1939), for instance,
practiced both in his home office and in the Massachusetts General Hospital,
where he advanced clinical hematology, medical education, and social work.
Toward the end of his career, Cabot chaired the Department of Social Ethics
at Harvard. He championed the role of hospital social workers long before it
became common to understand patient care as a team effort.35
Despite its undeniable benefits, the “new” scientific medicine of testing
and diagnostic precision stood in tension with the “old” medicine of
compassion and care. Sir William Osler (1849–1919), who served as
professor of medicine at Johns Hopkins University, may have overstated his
case to make a point. “The good physician treats the disease,” he wrote, “but
the great physician treats the patient.... It is much more important to know
what sort of patient has the disease than to know what sort of disease the
patient has.”36 Harvard professor Francis W. Peabody (1881–1927) also
warned that specialization and laboratory-based methods of diagnosis
threatened the personal bond between doctor and patient. In prophetic
comments, he noted that patients in advanced university hospitals were
sometimes passed from one specialist to another, submitted to multiple tests,
and treated for unimportant conditions. Tests and technology were no
substitute for personal relationships, Peabody insisted. In his most memorable
phrase, Peabody went to the core of the issue: “One of the essential qualities
of the clinician is interest in humanity, for the secret of care of the patient is
in caring for the patient.”37

Doing Better and Feeling Worse

Peabody’s fears were not fully realized until the second half of the twentieth
century when a chronic dissatisfaction settled over both doctors and patients.
Thanks to public health advances and improved dietary measures, medicine
had dramatically reduced deaths from infectious disease and extended life for
the masses. Yet even as doctors saved people who would have died only a
generation earlier, an increasingly biomedical focus on disease threatened the
care of the patient. People were “doing better and feeling worse.”38 As
accelerated scientific innovations made their way into the offices of family
doctors and onto the wards of a new generation of hospitals, observers
worried that the personal and trusting clinical relationship was in jeopardy.39
Patients felt skeptical about doctors’ genuine concern for them as people,
while doctors were troubled by patients’ lack of compliance and growing
challenges to their authority.
By the 1960s and 1970s, the modern ideal of the doctor-patient relationship
was threatened by structural changes in medicine and shifting cultural values
that challenged the authority of physicians. After World War II, with
suburbanization and the increased mobility of the public, the medical
profession was split increasingly into three distinct sectors of practice. First
was the expanding group of doctors and trainees who, working in medical
schools and hospitals, focused on research and training. Second were the
office-based private practitioners who had moved to the suburbs in large
numbers and whose standard of living rose dramatically. The third sector
included doctors who occupied the lowest rung on medicine’s ladder of
prestige because they worked in rural areas, the inner city, or in state
institutions.40
The growth of medical specialties in the United States also limited the
availability of family doctors and primary care physicians, further reducing
personal and lasting relationships between doctors and patients. This stood in
marked contrast to Britain, where primary care doctors served as gatekeepers
to specialists under the National Health Service. By the end of the twentieth
century, primary care doctors in the United States rarely saw their own
hospitalized patients, who were attended by new specialists known as
“hospitalists.” Under these conditions, patients and families could easily find
themselves bewildered and without guidance from a physician who knew
them or their relative as a whole person.
Perhaps the strongest force in the decline of the modern ideal of the doctor-
patient relationship, however, was the corporate transformation of American
medicine. Since the 1980s, the doctor as an independent professional and solo
practitioner has given way to the doctor as an employee of hospitals, health
maintenance organizations, group practices, and for-profit health care
corporations.41 In addition, the growth of private insurance payments, and the
passage of Medicare and Medicaid in 1972 generated new sources of income
and introduced another impersonal actor: the “third-party payer.”
To be sure, medicine has always been a business as well as a profession.
There has never been a “golden age” of the doctor-patient relationship.
Nevertheless, until the 1980s, doctors had never been employees of large
organizations dominated by bureaucratic authority and motivated by
commercial gain. In addition, large pharmaceutical companies, device
makers, and biotech companies also began hiring physicians as consultants
and researchers – leading patients to suspect that some doctors were
motivated by greed.42
In the first decades of the twenty-first century, such problems show no sign
of abating. In fact, some observers believe that the strong, personal, trusting
relationship between doctor and patient is no more. Of course, doctors still
see patients, some in long-term primary care relationships. But physician
encounters are often hurried, mediated by technology, paid for by third
parties, and take place in impersonal hospitals, emergency rooms, or clinics.
Not surprisingly, physicians are often dissatisfied with their work. Studies
in the new millennium showed alarming rates of burnout and depression. For
decades, doctors had been hearing how important it is to treat “the whole
person.” Now it was becoming clear that there are two “whole persons” in the
consulting room. Physicians too were suffering, a problem that attracted the
attention of scholars in academic health centers.43
The doctor-patient relationship, then, is in trouble on both sides of the
hyphen. To be sure, all is not lost. There is no shortage of sick and vulnerable
patients who need access to health care and to the attention of competent
physicians. And there is no shortage of altruistic and compassionate students
and physicians committed to the relief of suffering and the cure of disease.
Surveys reveal that most patients are actually satisfied with their doctors.44
In medical education, there are signs of renewed attention to the humane
care of patients: courses and programs in medical humanities, bioethics,
narrative medicine, spirituality in medicine, professionalism, and patient-
centered care. Meanwhile, health care is now acknowledged as a
collaborative enterprise. Doctors are not “captains of the ship” but leading
members of a team that includes nurses, physician assistants, physical
therapists, social workers, and a host of other health professionals. In fact,
cultivating collaborative and respectful relationships with all members of the
team may be the doctor’s new secret to what Peabody called “the care of the
patient.”45

Summation
This chapter explored the history of the doctor-patient relationship in the
west. Beginning with a discussion of how this relationship was conceived in
antiquity, it examined how the Hippocratic ideal became associated with the
Christian duty to care for the sick and needy; how the beliefs of antiquity
were questioned by Renaissance physicians who wanted to “see for
themselves”; how a professional ethics based on virtue arose in response to
increased competition between practitioners; and how the modern ideal of the
doctor-patient relationship based on a personal connection, careful physical
examination, and trust, arose in the late nineteenth century. Then, with a
focus on recent cultural and structural challenges to this modern model, it
considered how we might reconstruct the doctor-patient relationship to
address recent challenges, such as patients’ skepticism about doctors’
genuine concern for them as people and doctors’ worries about patients’ lack
of compliance and growing challenges to their authority. Overall, it
emphasized that the doctor-patient relationship is always evolving, and that
learning about its various historical configurations can help us understand the
responsibilities and needs of physicians and their patients.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Think about your favorite doctor. What do you value about him or
her?
2. What is your ideal doctor? Where does that ideal come from?
3. For Hippocrates, what was the proper attitude of a doctor toward his
patients? How does his attitude anticipate (or depart from) current
relationships between doctors and patients?
4. In today’s world of health care, the medical market is filled with
alternative and complementary healers, with nurse practitioners and
physician assistants. How does that complicate your understanding
of “the” doctor-patient relationship?

Suggested Writing Exercise

Think back to your last visit to the doctor’s office and write, for five to ten
minutes, about your interactions with the physician. How long did you have
to wait before the meeting? Where did the meeting take place? Had you seen
him or her before? What did you talk about during the examination?

Suggested Viewing/Listening
The Diving Bell and the Butterfly (2007)
ER (television series, 2004–2009)
Good Will Hunting (1997)
Saturday Night Live, “Theodoric of York” (season three, episode 18)

Further Reading
Honoré de Balzac, The Country Doctor
Geoffrey Chaucer, The Canterbury Tales
Anton Chekhov, “Ward Number 6”
Anne Fadiman, The Spirit Catches You and You Fall Down: A Hmong
Child, Her American Doctors, and the Collision of Two Cultures
Arthur Hertzler, The Horse and Buggy Doctor
Dr. Seuss, You’re Only Old Once!
Bernard Shaw, The Doctor’s Dilemma
William Carlos Williams, “The Use of Force”

Advanced Reading
Michael Balint, The Doctor, His Patient, and the Illness
Rita Charon, Narrative Medicine: Honoring the Stories of Illness
Jay Katz, The Silent World of Doctor and Patient
Dorothy Porter and Roy Porter, Patient’s Progress: Doctors and
Doctoring in Eighteenth Century England
Edward Shorter, Doctors and Their Patients: A Social History
David Rothman, Strangers at the Bedside

Online Resources
The American Academy of Family Physicians:
http://www.aafp.org/online/en/home.html
The American College of Physicians: http://www.acponline.org/
The American Medical Association: http://www. ama-assn.org/
Center for Studying Health System Change: http://www.hschange.com/
The Consumer Assessment of Healthcare Providers and Systems
(CAHPS): http://cahps.ahrq.gov/
Doctor-Patient Medical Association: http://www.doctorsandpatients.org/
 2 Constructing Disease
“When I use a word,” Humpty Dumpty said, in rather a scornful tone,
“it means just what I choose it to mean – neither more nor less.”
– Lewis Carroll1

Abstract
This chapter explores the history of theories and conceptions of
disease, while also attending to the epidemiological and symbolic
impact of key diseases such as leprosy, bubonic plague, and
influenza. Beginning with a discussion of the Hippocratic (or
humoral) theory of disease, it examines how this theory came to be
challenged by Renaissance humanists and, by the nineteenth century,
overturned by the germ theory of disease. Then it considers some of
the challenges facing us in the twenty-first century, including public
health measures, the genetic revolution, and the “medicalization” of
society.

Introduction
Societies, like Humpty Dumpty, decide what words mean. They decide who
deserves sympathy and blame, the social role of the sick person, and the
meaning of physical and mental illness. So too is society broken down into
constituent pieces that have distinct perspectives and needs: patients,
physicians, religious institutions, government, third-party payers, and
pharmaceutical companies. Diseases, in other words, are not so much
discovered by physicians and scientists alone as they are constructed by
various competing social groups.
This chapter focuses on both the history of theories and conceptions of
disease and the unusual epidemiological and symbolic impact of certain
diseases (e.g., leprosy, bubonic plague, influenza). The history of disease is
marked by fantastic progress. It is a story ranging from humoral theory,
miasmatism, and germ theory to contemporary understandings of chronic,
autoimmune, and genetic diseases. The recent history of disease also brings
with it hopes for dramatic new cures via genetically personalized medicine,
stem cell therapies, and nanomedicine. However, the history of disease is also
filled with stubborn and unexpected realities: the emergence of chronic
disease, medically induced illness, and new infectious diseases.
Disturbingly, medical knowledge has often been gained from the bodies of
subjugated and marginal populations that were considered outside the
boundaries of the fully human. Finally, the history of disease has recently
been characterized by what sociologists call “medicalization,” the process by
which human problems are turned into treatable diseases and brought under
the purview of medicine. Medicalization reminds us that labeling some
conditions as diseases is a public as well as a scientific matter that raises
questions about the goals of medicine, social policy, and the costs of health
care.

Ancient Theories of Disease

In general, ancient cultures understood the human body in terms of its
relation to the environment, the cosmos, and the gods who watched over
them and had the power to determine sickness or health. Yet there was no
absolute division between “natural” and “supernatural” understandings of
disease. Ancient Chinese medicine, for instance, was largely secular and
naturalistic.2 Even as classical Chinese medicine sought out a harmony
between the body, the environment, and the cosmos, most Chinese citizens
believed that illness was caused by malevolent ghosts, ancestors, karma, and
sin. In the Hebrew Bible, we see a similar combination of the sacred and the
secular. God is the physician of his people, yet physicians – common in
ancient Israel by the second century BCE – carried out their healing work as
human agents of God’s will.
 Likewise, in Greece, from the fifth century BCE the cult of Aesclepius
coexisted with Hippocratic medicine. Ancient Greeks generally believed that
disease was brought about by divine visitation, which only an appeal to the
gods or magic could cure. Sick persons appealed to Aesclepius, the Greek
god of medicine who was understood to possess a mythical healing power.
After performing ritual sacrifices and prayers in Aesclepian temples, the sick
entered a dreamlike state in which they received instructions for easing their
suffering – perhaps bathing, rest, or an attention to diet. The cult of
Aesclepius stood for centuries as the principal pagan response to disease,
even as Hippocrates (460–377 BCE) and his followers rejected supernatural
explanations of disease.3
Speaking of what is today known as epilepsy and was then called the
“sacred disease,” for instance, one Hippocratic author declared: “I do not
believe that ... [it] is any more divine or sacred than any other disease.... It is
my opinion that those who first called this disease ‘sacred’ were the sort of
people we now call witch doctors.... These are exactly the people who
pretend to be very pious and particularly wise. By invoking a divine element
they were able to screen their own failure to give suitable treatment and so
called this a ‘sacred’ malady to conceal their ignorance of its nature.”4
The Hippocratic approach to medicine, or humoral theory, dominated
European medical thought well into the nineteenth century. The humors –
basic four distinct bodily fluids or substances – were thought to be
responsible for a health, disease, and a person’s temperament. For the
Hippocratics, the world was in balance when its basic components
corresponded properly to each other: the humors (yellow bile, blood, phlegm,
black bile); the seasons (winter, spring, summer, fall); the elements (earth,
air, fire, water); the phases of life (childhood, youth, adulthood, old age);
qualities (cold, hot, dry, moist); and the temperaments (choleric, sanguine,
phlegmatic, melancholy). The preponderance of any given humor was
thought to be at the root of illness: too much phlegm resulted in winter colds,
while bile caused summer diarrhea and vomiting. Disease was thus
understood as a condition of imbalance rather than as a specific pathological
entity. Humoral imbalance, however, was itself caused by factors such as an
unhealthy environment, individual predisposition, and hygienic regimen.5
Figure 2. The Four Humours, from “Quinta Essentia” by Leonhart Thurneisser zun
Thurn (1531–95/96) published in Leipzig, 1574 (engraving) (b/w photo), German
School, (sixteenth century) /Private Collection /Archives Charmet/The Bridgeman Art
 Library.

Does this print appear to be a puzzle to be solved – something like a riddle – or is it

an explanatory lesson?
For most of us today, it’s a puzzle. In 1574, when it appeared in a book published in
Leipzig by the physician Leonhart Thurneisser zun Thurn (1531–1595/96), it was meant
to be a lesson that showed how the four humors – blood, phlegm, yellow bile, and black
bile – corresponded to astrology, represented by the symbols for constellations and
planets, and how they, in turn, shaped the character of men and women.
In the sixteenth century, medical theory continued to hold to the Hippocratic notion
that disease results from disequilibrium of the humors. Does the distribution of elements
on the page appear balanced and harmonious? Would you say that balance supports and
reinforces Thurneisser’s lesson? His complex ideas are represented by an equally
elaborate graphic system of text, symbols, geometry, and drawing. The frame of a print
or painting creates a relationship among the elements, whether those elements are
realistic, schematic, or abstract.
To decipher the symbols, search the web for images associated with both the four
humors and astrology.

Greek physicians focused their attention on patients with acute diseases

that could kill quickly – those known today as pneumonia, mumps, malaria,
and puerperal fever. The Hippocratic texts refer extensively to tuberculosis,
one of the most destructive diseases in the ancient world, as phthisis, the
Greek term for consumption.6 Hippocrates theorized that consumption
developed when external factors – climate, diet, exercise – combined with an
individual’s predisposition to the disease.7 Chronic diseases – those that
lasted longer than sixty days – were rarely mentioned, diagnosed, or treated.8
Roman physician Galen (129–210 CE) built on the Hippocratic corpus,
which had evolved throughout the Hellenistic period (343–146 BCE). Galen
believed, with Hippocrates, that the healer should restore a proper balance by
treating one quality with its opposite. If the patient was too cold, he or she
was treated by heating; if too dry, by dampening, and so on. For Galen,
health extended beyond medical care to one’s whole lifestyle, which included
the proper balance of exercise, diet, sleep, environment, and daily routine. As
a dietetic physician, Galen saw most disease as the consequence of a faulty
regimen, and hence avoidable. A healthy life thus became a moral obligation,
and a man with a healthy constitution was responsible for growing old
without experiencing sickness or pain.9
For both Hippocrates and Galen, the pursuit of medical truth was not
incompatible with religious explanation – in fact, Galen believed that
Aesclepius had saved him from a near-fatal disease10 – but their approach to
health was grounded in empiricism and a holistic approach to the
understanding of the cosmos. Humoral theory and Galenism also coexisted
alongside a growing miasmatic theory, which attributed disease to poisonous
vapors arising from swamplands and various polluted waters. Not until the
nineteenth century were humoral and miasmatic theories replaced by the
germ theory of infectious disease.

Disease in the Middle Ages (400–1300 CE)

After Roman emperor Constantine (272–337) ended the persecution of the
followers of Jesus in 313, Christianity played an increasingly powerful role in
the healing, treatment, and understanding of disease. Although salvation of
the soul was privileged over the health of the body, both physicians and
clergy treated diseases of the body.11 Indeed, medical care became an
important act of Christian charity, as Christian clergy claimed to heal through
the confession of sins, prayer, the laying on of hands, exorcisms, and
miracles. Many Christian saints intervened on behalf of a sinful sufferer. Just
as the ancient Greeks visited the Aesclepian temple in search of a cure for
their ailments, so too did medieval wanderers visit holy shrines in Spain (St.
James of Compostela) or England (St. Thomas a Becket in Canterbury).12

Case Study: Theodore of Sykeon

The following passage showcases the miraculous healing power of Saint Theodore of
Sykeon (c. 700 CE), a Byzantine saint who lived in Anatolia, the central region of
modern Turkey. Theodore’s biography records the saint’s exploits of healing, which
were typical of early Christian belief in medical miracles.
“The slave girl of a magnate had been possessed secretly by a demon for twenty-eight
years so that she was always ill and did not know what caused the malady. Her master
brought her to the saint praying that either by death or a restoration to health she might
be liberated from her sickness. Saint Theodore took hold of her head and prayed that the
cause of her illness might be made known and driven away. Immediately the demon in
her was disturbed and tore her, shouting: “You are burning me, ironeater, spare me,
 strangler of demons, I adjure you by the God who gives you power against me.”
Theodore bade the demon be silent and told the girl to return in a week’s time. On the
following Wednesday she came and once more the demon in her became excited and
abusive: “Oh this violence that I suffer from this harlot’s child! Twenty-eight years I
have possessed this girl and none of the saints found me out, and now this harlot’s son
has come and has made me manifest and handed me over to dread punishment. Cursed
be the day on which you were born and the day that brought you here!” Theodore
rebuked the demon with the sign of the Cross: “Even if I am the harlot’s son,
nevertheless to the glory of our Lord Jesus Christ the Son of God I bid you in his name
leave the girl and never take possession of her again.” The demon shouted in reply: “I do
your bidding and go out of her, but after three days she will die.” The saint answered:
“Come forth and the will of the Lord be done. For a God-fearing man may not trust you,
since your words are vain and false.” The demon tore the girl, threw her down at the
saint’s feet and went out of her. And she, coming to herself, said: “It is through your
holy prayers, father, that I have been healed, for I saw the demon coming out of my
mouth like a foul crawling thing.” Theodore prayed over her and dismissed her, bidding
her remain in the church for seven days. And the word of the demon proved to be false,
for after some days the girl and her master returned to the saint giving glory to God.”13

1. How is Theodore able to heal the girl?

2. What religious beliefs are implied in the text?
3. What are some possible naturalistic explanations to the girl’s illness? How do
you think medieval practitioners would have responded to such diagnoses?

The disease that attracted the most attention during the medieval period,
leprosy, offers a striking example of the way in which theology shaped social
conceptions of disease. Known today as Hansen’s disease after the scientist
who first discovered the infectious microorganism mycobacterium leprae in
1874, leprosy causes a chronic, painful, and debilitating skin infection that
can lead to the loss of fingers, toes, and facial features. Medieval authors
thought that leprosy was the same disease referred to in Leviticus 13–14,
which identifies a “repulsive scaly skin-disease” considered offensive to
God.14 Lepers therefore became stigmatized as unclean, nauseating,
disgusting individuals. The association between leprosy and moral impurity
was also consistent with the Galenic tradition that regarded health and
morality as indivisible.
Leprosy suddenly disappeared from Europe around 1300 only to be
replaced by a devastating epidemic. Bubonic plague, or the Black Death,
rampaged through Asia before sweeping westward across the Middle East to
North Africa and Europe. In the pandemic of 1347, Europe alone lost perhaps
twenty million people – nearly a third of its population.15 The onset of such a
devastating disease demanded an explanation. Where did the Black Death
come from? How did it afflict so many people in such a short period of time?
What cures – if any – were possible?
Today, medical historians know that bubonic plague is a rodent disease in
which a microorganism, Yersinia pestis, infects rodents (especially the rat).
The “bubonic” form of plague strikes humans when infected fleas choose a
human instead of another rodent host. When the flea bites its new host, the
bacillus enters the bloodstream and leads to the characteristic swelling (bubo)
in the neck, groin, or armpit. During the epidemic waves of the fourteenth
century, some thought that the plague was a form of humoral imbalance
resulting from “miasma” – the bad air or poisonous vapors found in
unhealthy environments.16 Others, sensing that the plague was contagious
(spread from person to person) imposed quarantines that separated the poor,
who lived in the most squalid conditions, from the rest of urban populations.
Most medieval folk, however, believed that God had punished people for
their evil ways.17 This theological view was especially sobering since, unlike
leprosy, which only affected specific individuals, the plague had afflicted all
of Europe.

The Medical Renaissance

In 1525, a new Greek translation of Galen’s collected works led to renewed
reverence, and even a slavish obedience, to the Galenic and Hippocratic
tradition.18 Yet the classical assumptions of humoralism that had dominated
explanations of health and disease in the Western world did not escape
unscathed from the Renaissance. Whereas some medical humanists restored
texts to establish the authority of ancient Greek and Roman masters, others
offered a “new science” in place of tradition.
The first significant challenge came from Swiss polymath Paracelsus (c.
1493–1542), who rejected both humoral theory and the elemental quartet of
earth, wind, air, and fire. Instead, Paracelsus advocated a natural philosophy
based on the chemical substances salt, mercury, and sulfur.19 As a further
departure from the Hippocratics, who believed that contraries cure, the
Paracelsians insisted on cure by similitude. A poisonous disease, for instance,
had to be cured by a like poison. Consequently, drugs compounded from
mercury – arsenic, antimony, and others – were used as purges.
Neither “the ancients” nor “the moderns” had answers to the new diseases
of sixteenth- and seventeenth-century Europe: typhus, many unidentified
fevers, and especially syphilis. Known as “the pox” or “the great pox” to
distinguish it from smallpox, syphilis spread throughout Europe in the early
1500s and behaved like a disease that no one had seen before. Although its
origin is uncertain, most historians of medicine trace the appearance of
syphilis in Europe to Columbus’s exploration of the New World.20 His arrival
in Hispaniola precipitated a disastrous epidemic among members of the
indigenous population, reducing them from around one million to under
20,000 – a monumental, tragic consequence of colonialism (see Chapter 6).21
But the cultural transmission of disease also worked in reverse: According to
the “Columbian theory of syphilis,” the Amerindians unwittingly transmitted
syphilis to Columbus’s crew and, by extension, to Europe in the late 1400s.
Syphilis is now understood to be a sexually transmitted disease caused by
the spirochete organism Treponema pallidum, which was discovered in
1905.22 The disease made a great impression on early modern Europeans
because of gruesome symptoms that include skin lesions, skeletal aches, and
genital rashes. In its final stage, syphilis damages several organ systems and
may lead to dementia. During the Renaissance, debates raged over what
caused this terrible outbreak and how to treat it. Galenic theory held that the
pox was a humoral disorder, with phlegm as the prime culprit; treatment,
consequently, involved the expulsion of phlegm by spitting or sweating.
Paracelsus, on the other hand, advocated rubbing “Arabic ointment,” or a
type of mercuric sulfide, on the lesions.23
Syphilis was typical of the new plagues brought about by western
exploration, conquest, commerce, migration, and – most of all – the slave
trade.24 In addition to the slave trade, syphilis was spread by international
warfare, intercultural contact, unclean conditions, increased population
density, and the ebb and flow of refugees and peasants.25 Because of its
widespread impact, syphilis (along with the bubonic plague) profoundly
affected the way in which early moderns thought about disease. Traditionally,
Western medicine focused on diseased individuals rather than on disease
itself: The Hippocratics taught that disease (humoral imbalance) resulted
from congenital weaknesses, an unhealthy environment, or sinful behavior.
Any cures, consequently, involved restoring equilibrium or placating the
gods. But from its first appearance, syphilis operated indiscriminately,
afflicting masses of people at the same time. This prompted a search for
causes of disease outside of the body, including a conception of disease as a
distinct external entity that might be spread from person to person.

The Scientific Revolution and the Enlightenment

These changes in medical thought were part of a seventeenth-century
movement conventionally known as the scientific revolution, which placed
an emphasis on empirical data and the power of human reason. Careful and
repeated observation, not religious or medical dogma, would lead to new
knowledge and permanent improvement of the human condition. The utopian
philosopher-scientist Francis Bacon (1561–1626) promised that empirical
observation and systematic investigation would transform society. “The
improvements of medical practice,” wrote Bacon, “which will become more
efficacious with the progress of reason and of the social order, will mean the
end of infectious and hereditary diseases and illnesses brought on by climate,
food, or working conditions. It is reasonable to hope that all other disease
may likewise disappear as their distant causes are discovered.”26
In a direct challenge to Galenic medicine, English physician William
Harvey (1578–1657) proved that the heart functioned as a muscular pump
that pushed blood through a bodily circuit of veins and arteries in the body. In
one test of his theory, Harvey cut open living animals that bled to death as
their hearts forced blood out of their arteries. Rene Descartes (1596–1650),
who attended one of these dramatic demonstrations, cited Harvey to support
his own theory that animals and humans are essentially organic machines
governed by the laws of mechanics. What separated humans from animals, in
Descartes’ view, was their faculty of speech and possession of an eternal
soul.27
Two hundred years after Bacon, Enlightenment thinkers came to agree
with him that health was a natural state to be attained and preserved – maybe
even perfected. In the eighteenth century, philosophers such as Jean-Jacques
Rousseau (1712–1778), John Locke (1632–1704), and Immanuel Kant
(1724–1804) believed that God had created a benevolent universe that
operated according to immutable “laws of nature,” suggesting that scientists
could discover the way these laws worked in the human body. Accordingly,
the eighteenth century witnessed the emergence of new medical systems of
classification and identification. Scottish physician William Cullen (1710–
1790) developed a nosology, or disease classification, that treated diseases as
real entities with their own distinctive signs.
New work in the study of diseased organs and tissues also transformed
classifications of disease. Although a handful of physicians – especially
Vesalius – had previously investigated signs of disease in the dead bodies of
executed criminals, Giovanni Battista Morgnani (1660–1723) performed the
first systematic investigations in modern pathological anatomy. Morgnani’s
monumental On the Sites and Causes of Disease (1761), based on 700
autopsies, demonstrated that visible traces of disease could be found in
various organs.28 By correlating symptoms of the living with these
postmortem anatomical lesions, physicians were able to locate particular
diseases in specific organs.
In spite of new knowledge and radical shifts in science and philosophy,
therapeutic practice remained largely traditional. While the Galenic tradition
was continuously refuted in theory, it was consistently upheld in practice.
American physician and revolutionary Benjamin Rush (1745–1813), for
example, remained faithful to the age-old therapy of bloodletting, which was
thought to correct fevers, apoplexy, or headaches resulting from an excessive
buildup of blood. For Rush, cure involved bleeding (venesection), blistering,
purging, and vomiting. During the Philadelphia yellow fever epidemic in
1793, Rush’s fidelity to “heroic medicine” – aggressive bloodletting, purging,
vomiting, sweating, and blistering – killed as many of his patients as the
disease itself.

The Birth of Modern Medicine

As the leading medical theories of seventeenth and eighteenth centuries
became more widely known, physicians began to think differently about
disease and therapeutics. Diseases came to been seen less as systemic
imbalances in the body’s natural harmony and more as a set of distinctive
signs and symptoms that could be analyzed, separated, and measured in
isolation. The older “heroic” therapeutics gave way to an emphasis on diet
and regimen along with the belief that, with time and rest, the body would
heal itself.29
By the 1850s, the empirically determined “normal” began to replace the
philosophically grounded “natural” as the paradigm of order and health.
Physicians, in other words, measured health in terms of statistical norms
rather than in terms of the patient’s “natural” state of health.30 Many of these
principles of modern Western medicine emerged in the vast Parisian hospitals
of Pitié-Salpêtrière and Bicêtre, where physicians and scientists studied –
among other things – forms of mental illness (then divided into idiocy,
dementia, melancholia, mania, and hysteria) and diseases of older people.31
The new science of biomedicine brought problems as well as benefits for
clinical care. Following Morgnani’s emphasis on anatomical lesions, Xavier
Bichat (1771–1802) refined pathology by demonstrating that disease affected
localized tissues rather than organs as a whole.32 Once Bichat’s tissue
pathology established an ontologic foundation for observing and defining
disease, a patient’s experiences could be dismissed as secondary. If disease
could be located in tissues or cells, there was no reason to attend to a
patient’s subjective description of symptoms. Bichat’s contributions also
paved the way for a new form of medicine – known as clinical or hospital
medicine – that displaced the more individualistic, patient-centered medicine
of the eighteenth century. A more limited way of seeing – philosopher Michel
Foucault (1926–1984) has famously called it “the clinical gaze”33 –
eventually resulted in a focus on treatment of disease rather than care of
patients.
Walter Benjamin (1892–1940) has suggested that every act of civilization
is also an act of barbarism.34 Unfortunately, the history of medicine provides
evidence for this harsh generalization. New biomedical knowledge has often
been obtained from observing, dissecting, or experimenting with bodies or
persons considered less than fully human – the subjugated, enslaved, or
marginalized populations housed in prisons, indigent hospitals, asylums, and
mental hospitals.35 Nineteenth-century medical schools resorted to grave
robbing in order to garner enough bodies for research – particularly the
graves of both free and enslaved African Americans. One American
Southerner, for instance, endorsed a proposal that permitted local authorities
to release bodies of executed blacks while also assuring the safety of white
corpses: “The bodies of colored persons, whose execution is necessary to
public security, may, we think, be with equity appropriated for the benefit of
a science on which so many lives depend.”36
The French focus on tissue pathology in the early nineteenth century set the
stage for German study of cellular physiology and pathology in the second
half of the nineteenth century. German polymath Rudolf Virchow (1821–
1902), for example, urged his students to “think microscopically.” He
disagreed with the view that that cells originated from inorganic matter and,
with his pronouncement omnis cellula a cellula – “every cell from a cell” –
declared that each cell was created as a copy of a prior cell. For Virchow,
pathology was a cellular affair: disease occurred when abnormal changes
within one cell were transferred to other cells through division. Hence,
biomedical science turned its gaze to increasingly smaller units: just as
Morgnani had emphasized the organ and Bichat the tissue, Virchow
highlighted the crucial role of cells in understanding disease.
The main idea of bacteriology or “germ theory” – that disease is caused by
tiny infectious beings – was not entirely new in the nineteenth century. As
early as 1546, Girolamo Fracastoro (1478–1553) declared that tiny seeds
(seminaria contagiosa) carried disease. Using the newly invented microscope
in the 1660s, British naturalist Robert Hooke (1635–1703) confirmed the
presence of these infinitesimally small creatures and named them “cells.”
Today these microorganisms are known as single-celled bacteria or protozoa
or their even smaller cousin: the virus.
French chemist Louis Pasteur (1822–1895) is usually considered the
founder of the germ theory of disease. In 1878, Pasteur argued that
microorganisms were responsible for disease, putrefaction, and fermentation.
Once these organisms were known, he suggested, prevention would be
possible by developing vaccines, a process pioneered a generation earlier by
Edward Jenner (1749–1823).37 To verify his findings, Pasteur presented a
public display of anthrax injection to a group of cattle. His technique was to
inject small quantities of microorganisms that had been made less virulent;
the weakened organisms, as a result, triggered immunity without producing
the symptoms of full-blown disease. The public demonstration proved not
only the effectiveness of the vaccine – the vaccinated cattle survived while
the others perished – but also Pasteur’s savvy ability to popularize his ideas.
 Robert Koch (1843–1910) stands alongside Pasteur as the cofounder of
germ theory. In addition to establishing bacteriology as a scientific discipline,
Koch discovered the bacteria that cause tuberculosis, cholera, and other
diseases. These discoveries confirmed that individuals were often carriers of
infectious diseases. They also established that these diseases took root and
flourished in crowded urban conditions of poor hygiene, sanitation, and
nutrition, thereby encouraging the development of new public health methods
to protect urban populations from epidemics.38
Germ theory contributed to the gradual reorientation of public health
toward the individual. People were increasingly seen as carriers of disease,
and new methods were designed to prevent them from spreading infection.
Like all new theories, germ theory was initially controversial. Authorities in
London clung to the miasmatic theory of disease for years after Pasteur’s and
Koch’s discoveries. Nevertheless, public health officials successfully
prevented the spread of disease by isolating infected individuals – by
quarantining, for example, sailors infected with cholera on ships. By the
1890s, most rank-and-file physicians supported germ theory. In the twenty
years between 1880 and 1900, scientists identified an unprecedented number
of bacteria, including those responsible for typhoid fever, leprosy,
tuberculosis, cholera, diphtheria and tetanus, malaria, pneumonia, plague,
botulism, dysentery, and syphilis.39

Disease in the Twentieth Century

The discoveries of the bacteriological revolution did not quickly translate into
effective treatments for patients. Robert Koch, for instance, rashly declared
that he had found a treatment for tuberculosis, only to discover that his
“tuberculin” was a failure.40 From 1914–1918, a virus later known as Type
A/H1N1 unleashed a devastating influenza epidemic that killed perhaps 50
million people around the world – far more than the combined number of
soldiers killed during World War I and victims of the Black Plague.
Viruses are microorganisms that are even smaller than bacteria. They were
later known to be the culprits in diseases such as smallpox, polio, measles,
influenza, and AIDS. Viruses could not even be seen until the invention of
the electron microscope in the 1930s and were not clearly understood until
the 1950s. Although there is still no definitive treatment for viral diseases,
vaccines for prevention were developed as far back as Edward Jenner’s
(1749–1823) vaccination for smallpox at the end of the eighteenth century. In
the mid-twentieth century, Jonah Salk (1914–1985) and Albert Sabin (1906–
1993) discovered vaccines for polio and various strains of influenza. Thanks
to a worldwide effort, the World Health Organization declared in 1977 that
smallpox had been eliminated from the earth.
The 1940s witnessed the first successful antibacterial medications: sulfa
drugs and penicillin, which had been discovered by Scottish scientist Arthur
Fleming (1881–1955) in 1928. Penicillin proved to be an effective cure for
syphilis, certain forms of pneumonia, and strep throat, among other bacterial
infections. The development of streptomycin led to a cure for tuberculosis.
By the 1950s, drug companies were producing mass quantities of an
expanding array of antibiotics that effectively treated patients who would
have died from infectious disease just a few years earlier. Perhaps the most
significant advance of Western medicine in the second half of the twentieth
century was the ability to tame or eliminate infectious diseases through the
application of preventive medicine, vaccination, and antibiotic drug
treatment.
As in previous eras, these great strides in biomedical knowledge were
shadowed by the exploitation of vulnerable and stigmatized populations. To
test the effectiveness of penicillin between 1946 and 1948, for example, U.S.
researchers in Guatemala used prostitutes to infect prison inmates, mentally
ill persons, and Guatemalan soldiers with syphilis and other sexually
transmitted diseases (STDs). To test antimalarial treatments during World
War II, researchers from the University of Chicago working with the U.S.
Army infected prisoners with malaria at the Stateville Penitentiary in Illinois.
After World War II, the Allied Forces held military tribunals in
Nuremberg, Germany, where Nazi doctors were convicted of mass murder
and criminal human experimentation. The 1947 Nuremberg Code articulated
the major principles of ethically acceptable research with human beings:
informed consent, absence of coercion, rigorously constructed scientific
experimentation, and beneficence toward the research participants. Sadly, the
Code did not significantly alter federally funded American experimentation
with human subjects after the war. Researchers continued to rely on
populations that could not fully exercise free and informed consent:
prisoners, men enlisted in the army, the mentally ill, and indigent and
minority populations. Perhaps the most well-known example of unethical
human experimentation in the United States was the Tuskegee Study of
syphilis in African American men in Macon County, Georgia, initiated
during the 1930s by the U.S. Public Health Service. In order to study the
“natural history of syphilis” researchers withheld penicillin from the men
even though it was known to be effective against syphilis by the 1950s. The
study was not halted until a reporter exposed the story in 1972.41 Unethical
research practices in the United States were not effectively constrained until
the Belmont Report and the Federal Code of Regulations, which governed
human experimentation beginning in the late 1970s.42
Ironically, progress in bacteriology and the antibiotic treatment of
infectious disease in Western society gave rise to a new pattern of disease and
mortality, usually known as the “epidemiologic transition.”43 Over the course
of the twentieth century, mortality from infectious diseases (e.g.,
tuberculosis, malaria, typhoid, cholera, smallpox) declined substantially,
causing the average age at death in the United States to increase from forty-
one in 1900 to seventy-eight in 2006.44 Meanwhile, the decline in deaths
from infectious disease gave rise to an aging population, the growth of
chronic disease, and increasing disability. Deaths due to chronic and
degenerative diseases (primarily heart disease, cancer, stroke, chronic
obstructive pulmonary disease) accounted for 76 percent of all deaths in the
United States in 2002.
By the 1970s, many observers believed that infectious disease no longer
posed a major threat in the developed world. Chronic diseases, accidents,
homicides, smoking, and drinking had replaced infectious disease as primary
causes of death. Some thought that deaths among younger people might be
largely preventable. This perspective turned out to be sadly mistaken. It
ignored mortality due to endemic and epidemic contagious diseases in Africa
and Asia (poor and undeveloped countries have always suffered the heaviest
burden of disease). And in an era of international air travel, new and
recurring infectious diseases spread rapidly across the world. New viral
hemorrhagic fevers, AIDS, and the return of previously contained diseases
such as cholera, malaria, and syphilis were just a few of the diseases that
posed serious threats to global health at the end of the twentieth century.45
The Genetic Revolution and Medicalization
Throughout the late twentieth- and early twenty-first centuries, scientists
continued to plumb the infinitesimal depths of the human body. Genetics
took Rudolph Virchow’s insistence to “think microscopically” a step further,
peering inside the cell nucleus in search of the secrets of heredity. In 1953,
James Watson (1928–) and Francis Crick (1916–2004) revealed the structure
of DNA, the molecule that transmits genetic material from one generation to
another. Alterations or mutations of genes – which provide instructions for
cellular growth and development – are now known to increase susceptibility
to or cause more than 4,000 diseases.46
By 2003, thanks to the federally funded U.S. Human Genome Project,
researchers had identified all 20,000–25,000 genes in human DNA. This
information was stored in databases, allowing analysis and technology to
transfer to the private sector for use in diagnosis, prevention, and treatment of
genetic abnormalities involved in birth defects, mental retardation, autism,
connective tissue disorders, and certain inherited forms of cancer or
dementia.
At the end of the twentieth century, the rise of genetic medicine led to a
good deal of hype and misinformation about the promises of gene therapy
and molecular medicine. Contrary to popular understanding, most genes or
genetic mutations create only a predisposition to disease. Epidemiologists
and others have linked the prevalence of cancer to environmental pollution
and chemicals found in food, plastics, and other household goods. A small
percentage of inherited genes are known to cause disease alone – specifically
BRCA 1 and BRCA 2, which lead to the development of breast cancer in 85
percent of women who carry them.
Great advances in understanding the genetic components of illness have
not yet translated into any clear triumphs over cancer or other diseases.
Nevertheless, the era of genetic engineering – transplanting healthy genes
into sick persons or preventing illness by altering the genetic makeup of
embryos – is rapidly approaching. Genetic engineering is replete with ethical
and humanistic questions: Should we select embryos for desired traits or
sexual selection? Should we alter or insert genes into fetuses to produce
stronger athletes or “better children?” It remains to be seen which of the
dreams for cure and prevention will come to fruition and which of the
nightmares about the manipulations of the human genome will become
realities.47
In the second half of the twentieth century, while people were dying from
chronic and infectious diseases whose definitions were unquestionably
biomedical, an entirely new range of human problems were relabeled as
disease. This process, which sociologists call “medicalization,” transforms
human problems into diseases or disorders and brings them under the
jurisdiction of medical diagnosis and treatment.48 Medicalization also turns
certain normal life events or cultural deviances into disease. In the last forty
years, for example, normal biological experiences such as menopause,
infertility, childbirth, baldness, aging, and even death have been labeled as
diseases. Certain conditions or behaviors considered deviant (e.g.,
alcoholism, drug addiction, homosexuality, and sexual abuse) were culturally
reframed as “sickness” rather than “badness.”
Medicalization lends credence to what might be called the “Humpty
Dumpty” theory of disease. As Humpty Dumpty remarked in the epigraph to
this chapter, words mean what societies want them to mean, and these
meanings are open to contention and change. Homosexuality, for example,
was defined as a medical pathology by the American Psychiatric Association
in 1968 and then demedicalized in 1974 after strenuous debate and political
pressure from the gay community.49 Now-common maladies such as
attention deficit/hyperactivity disorder (ADHD), anorexia and bulimia,
chronic fatigue syndrome (CFS), post-traumatic stress disorder (PTSD),
panic disorder, and premenstrual syndrome were not even named fifty years
ago. As another example, the diagnosis of autism increased forty-fold in the
first decade of the twenty-first century. This diagnosis did not represent an
epidemic of autism – brought on, some say, by vaccination. Instead, it
reflected the fact that public schools required a diagnosis of autism before
they would authorize special services for children.50
Leaving aside the question of what constitutes a “real” medical condition,
medicalization is part and parcel of the enormous expansion and
transformation of medicine in the last half century. In 1950, for example, 4.5
percent of the U.S. gross national product was spent on health care. In 2006,
this percentage had jumped to 16 percent. Even more strikingly, the number
of physicians in the country nearly doubled during that period.51 This
dramatic expansion of medicine and health care, along with an insatiable
public demand for health, created a vast increase in disease categories,
diagnoses, and treatments.
When does medicalization become overmedicalization? This question has
no easy or obvious answer. As we have seen, throughout the history of
medicine, societies decide what counts as illness. Decisions about what
qualifies as disease today are made in an increasingly commercialized health
care system. They are complex negotiations between various social actors
and institutions, including scientists, governments and their reimbursement
categories, pharmaceutical companies, private insurance companies,
biotechnology companies, social movements, consumers, and patient
advocacy groups.
The future history of disease will play out in the overlapping area between
biological threats to human health and social decisions about what conditions
are diagnosable and treatable. The implications for the ethics of health care,
the economy, and the structure of society will be profound.

Summation
This chapter explored the history of theories and conceptions of disease,
while also attending to the epidemiological and symbolic impact of key
diseases such as leprosy, bubonic plague, and influenza. Beginning with a
discussion of the Hippocratic (or humoral) theory of disease, it examined
how this theory came to be challenged by Renaissance humanists and, by the
nineteenth century, overturned by the germ theory of disease. Then, with a
focus on public health measures, the genetic revolution, and the
“medicalization” of society, it considered some of the challenges facing us in
the twenty-first century. Overall, this chapter pointed out that, throughout the
history of medicine, societies have decided what counts as disease, and that
this insight can help us to negotiate the increasingly complex network of
social actors and institutions that influence how we think of health and
illness.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Have you or someone in your family ever had a serious disease?
What was its impact?
2. Galen thought that disease was a consequence of a faulty regimen for
maintaining health. What would he have thought of obesity?
3. Do you agree with Galen that maintaining health is a moral
obligation? Why or why not?
4. Do you think aging is a disease?

Suggested Writing Exercise

Choose a television commercial that deals with questions of health in some
way. Write for seven to ten minutes. Does the ad deal with things that
concern you or your family? What do you notice about the relation between
disease and society in the ad? What are some of its unspoken assumptions
about health (and disease)?

Suggested Viewing
And the Band Played On (1993)
Contagion (2011)
Hysteria (2011)
The Libertine (2004)
Malaria: Fever Wars (2006)
Philadelphia (1993)

Further Reading
Daniel Defoe, Journal of the Plague Year
Siddhartha Mukherjee, The Emperor of All Maladies: A Biography of
Cancer
Susan Sontag, Illness as Metaphor
John Updike, “From the Journal of a Leper,” in Problems and Other
Stories
Advanced Reading
Peter Conrad, The Medicalization of Society: On the Transformation of
Human Conditions into Treatable Disorders
Paul Farmer, Infections and Inequalities: The Modern Plagues
Mark Harrison, Disease and the Modern World
J. N. Hays, The Burdens of Disease: Epidemics and Human Response in
Western History
Arno Karlen, Man and Microbes: Diseases and Plagues in History and
Modern Times
Charles Rosenberg, Framing Disease: Studies in Cultural History
Sheldon Watts, Disease and Medicine in World History

Online Resources
American Public Health Association
http://www.apha.org/
Center for Disease Control
www.cdc.gov
Office of Disease Prevention
http://prevention.nih.gov
 3 Educating Doctors
To study the phenomena of disease without books is to sail an uncharted
sea, while to study books without patients is not to go to sea at all.
– William Osler1

Abstract
This chapter explores the history of medical education in the west.
Beginning with a discussion of how medical knowledge was
established and transmitted in antiquity, it examines how many
important medical texts were translated into Arabic in the Middle
Ages; how scholars rediscovered and rethought these texts in the
Renaissance; how medical education evolved during the eighteenth
and nineteenth centuries to include new academic subjects such as
physiology and chemistry; and how, by the middle of the twentieth
century, medical education came to be associated with academic
health centers. Then, with a focus on a 2010 Carnegie Foundation
Report, it considers some of the challenges facing medical education
in the twenty-first century.

Introduction
As all teachers and students know, education is a difficult business. Medical
education is especially difficult because people’s lives are at stake and
because the acquisition of scientific and clinical knowledge is such a
demanding process. The history of medical education is characterized by
several pedagogical tensions. Do students learn best from texts and classroom
lectures or from clinical apprenticeships and experience? Should education be
focused on the disease or the person? On the mastery of universal scientific
knowledge or the care of unique individuals? These polarities are not
mutually exclusive, of course, but finding the right balance among them is an
elusive and ever-changing task. The history of medical education is also
characterized more recently by a conflict between educating a privileged
male minority and opening medical education to women, immigrants, and
racial and ethnic minorities.
This chapter sketches the history of these issues in medical education as
they emerge in antiquity and evolve into the twenty-first century, focusing on
Western Europe and the United States. Our principal interests are: (1) the
shifting pedagogical balances of theory versus practice and the scientific
versus the humanistic; (2) the evolving mix of gender, race, and ethnicity in
medical student bodies over the last 150 years; and (3) the shifting and often
unstable economic realities, incentives, and needs of teachers, students, and
institutions.

The Birth of Learned Medicine

Traditionally, formally trained medical students came from privileged family
backgrounds. In ancient India, for example, the Charaka Samhita, an
Ayurvedic Sanskrit text from 300 BCE, advised teachers to seek students
who associated with or came from a family of doctors. Teachers urged their
students “to be chaste and temperate, to speak the truth, to obey ... in all
things and to wear a beard.”2 In addition to a robust beard, discipline and
integrity were essential. In ancient Egypt, medical students often lived under
the strict supervision and direction of their teachers. One treatise
demonstrates that some student recreational habits seem unaffected by
history. “It has been reported to me,” a teacher admonished a rare female
pupil, Emena, “that thou neglectest thy studies and seekest only thy pleasure,
wandering from tavern to tavern. But what profiteth the odour of beer?”3
Before the fifth century BCE, Greek medicine was characterized by two
kinds of knowledge: secular traumatology (the care of wounds, injuries, and
broken bones) and supernatural revelation (the wisdom of the gods). In the
first case, a resident or wandering craftsman imparted knowledge orally and
by practice, usually from father to son. The second kind of practitioner – the
priest as physician – imparted religious wisdom to his initiates. This situation
was altered when the Hippocratics (c. 400 BCE) separated medical from
religious explanation and produced the first secular medical texts. Despite the
influence of the Hippocratic Corpus, its pedagogical value was often called
into question. Aristotle (384–332 BCE), whose father was a physician,
commented on the perennial tension between textual and clinical learning:
“Clearly you do not become a physician by books ... the writers of books try
to describe ... the general ... methods of therapeutics. That would be useful
for the skilled man but the untrained one gains no use from it.”4
In 323 BCE, teachers at the world’s largest and most famous library – the
“Musaeum” at Alexandria – invented new educational formats that later
became known as lectures and seminars. In medicine, competing sects
produced rival educational forms. Herophilus of Chalcedon (335–280 BCE)
undertook the first formal dissections of human bodies, which in turn became
part of the education of physicians. In contrast, the empiricists claimed that
the knowledge of internal human processes could only be learned from the
experience of caring for patients. After Alexandria passed into Roman rule in
80 BCE, Roman hostility to Greek philosophy and science led to a shorter
and less theoretical style of education. Roman physician Thessalus (c. 70–
95), who popularized the study of medicine, claimed that he could transform
a student into a physician in six months.5
During the Hellenistic Period (326 BCE–146 AD) an amalgam of Greek,
Jewish, and Egyptian cultures yielded more open social norms and popular
forms of medical knowledge. Some writers called for medical knowledge to
be taught as part of general public education, leading to occasional public
lectures and advice for laymen in need of sudden medical assistance. The
term “iatrine” (meaning a woman physician) signified authority and
jurisdiction that occasionally went beyond the traditional expectations of
women as midwives. Male physician Heracleides of Taras, for example,
wrote to a woman physician, Antiochis, addressing her as a colleague and
providing clinical advice.6 Slaves were also sometimes permitted to become
physicians among the Romans. In general, however, the ideal physician was
expected to be a healthy, courteous male from a lofty social position.
In the tradition of learned medicine, Galen’s (131–201) ambiguous attitude
toward books exemplified the perennial tension between textual and clinical
education. On the one hand, he argued that books undermined the importance
of seeing with one’s own eyes. On the other hand, Galen wrote up to 600
treatises and employed scribes to write down his words. Indeed, the works of
Hippocrates (c. 460–377 BCE) and Galen came to be regarded as infallible
sources of medical knowledge – which both fostered and limited the growth
of education and research – for more than 1,500 years.
After the fall of the Roman Empire in the fifth century, the urban life of
antiquity was replaced by a medieval countryside that was dotted with castles
and cathedrals. Learned medical practice and teaching virtually disappeared.
Although some manuscripts were preserved and studied in European
cathedrals and monasteries, the center of medical knowledge and learning
shifted to the east. During the eighth century (sometimes known as the age of
translations) scores of Greek texts were translated into Arabic, including
Hippocrates’ major texts and 129 of Galen’s works.7 The Firdaws al-hikma,
a medical compendium by Ali ibn Rabban al-Tabari (838–870), contained
Arab translations of not only Hippocrates, Galen, and other Greek writers but
also texts from the Persian and Indian traditions. Arabic scholars thus
preserved classical Western medical knowledge that would otherwise have
been lost and made their own contributions as well.
In a largely rural European society, very few people read at all, let alone
medical texts, which were written in Latin, scattered among monasteries and
a few cities, and hand copied on parchment made from the skin of sheep and
cattle. Aspiring medical students, however, were expected to possess
knowledge of the classical liberal arts by the age of fifteen. From the ninth
century, medical texts balanced classical philosophy with practical advice and
observation. “From what signs do you diagnose melancholia?” asked one
treatise. Answer:

From a distaste for life and dislike of other people’s company: from the
sadness of the countenance, from the silence, suspicion and irrational
weeping of the patient: from the inflammation of the precordia, from the
coldness of the limbs accompanied by slight perspiration, from the
thinness of the body and the general debility of the subject.8

This question-and-answer format implies the existence of a student-teacher

relationship, although its nature and frequency cannot be documented.
Medical texts often warned students against drunkenness, overeating,
consorting with women of ill repute, or any activity that could damage one’s
mind.9
Formal medical education in the west appeared with the founding of
universities at Paris (1110), Bologna (1158), Oxford (1167), Montpellier
(1181), Cambridge (1209), Padua (1222), and Naples (1224). Padua and
Bologna offered the most advanced medical education and attracted students
from across Europe. Like the other learned professions of law and theology,
medicine anchored itself in textual analysis. By the end of the twelfth
century, medical education had become a process of learning set doctrines in
unquestioned traditional texts. Learned physicians and church officials tended
to disparage surgery, which was considered a “lower,” less refined art.
However, itinerant surgeons who practiced their craft daily were likely more
skilled than those who taught from books and occasional practice.

The Renaissance Challenge to Tradition

The rebirth of European intellectual and cultural life in the fourteenth and
fifteenth centuries brought with it profound implications for both medical
knowledge and ethical norms. As an interest in “all things Greek” suffused
the field of medicine, scholars called for new translations of Hippocrates and
Galen in order to avoid reading imperfect, second-hand texts from the Arabic
or Latin. By 1531 most of Galen’s work was available in both Greek and
Latin. New translations of Galen, Hippocrates, and others not only reasserted
the superiority of ancient medicine, they also contributed to a medical
tradition rooted in book learning rather than in practice and observation. In
the teaching of anatomy, for example, the teacher sat above students and read
from Galen’s On Anatomical Procedures, which included errors that no one
challenged for centuries.10
Just as he questioned the method of Galenic anatomy, Andreas Vesalius
(1514–1564) also contested the traditional pedagogical method of instruction
through books. In his De Humani Corporis Fabrica (1543), which was
immortalized by Jan van Calcar’s (1499–1546) stunningly beautiful
illustrations, Vesalius detailed the method in which the professor himself
performed the dissection (known today as a prosection). Eventually, the
Vesalian insistence on “seeing for oneself” became a fundamental tenet of the
so-called “New Science.” The same year that the Fabrica was published,
Nicolaus Copernicus (1473–1543) used a telescope to demonstrate that the
earth revolved around the sun. By the seventeenth century, the great English
physician Thomas Sydenham (1624–1689) would insist that “the physician
who earnestly studies, with his own eyes – and not through the medium of
books – the natural phenomena of the different diseases, must necessarily
excel in the art of discovering what, in any given case, are the true indications
as to the remedial measures that should be employed.”11
 Figure 3. Vesalius performing dissection, title page of De Humani Corporis Fabrica,
1543, Courtesy of National Library of Medicine

What a crowd! How many figures are there? Can you speculate about their age,
profession, class status, and relationship to one another? Pay attention to their clothing,
hairstyle, posture, gestures, and position within the frame. Which details are most
helpful? Could some of the figures be representations of actual people?
You probably noticed immediately that the crowd is witness to the dissection of a
female cadaver. On her right stands Andreas Vesalius, the creator of the book De
Humani Corporis Fabrica (On the Fabric of the Human Body).
The Fabrica, as it is called, first published in 1543, is regarded as one of the most
influential books on human anatomy. What instructions do you think Vesalius might
have given to the artist, a student of the great Venetian painter Titian, to communicate
the significance of his book?
Look at the overall composition and note that the crowd is divided into four sections
by the skeleton’s staff and the rail that separates the crowd into upper and lower levels.
The cadaver seems to lie on Death’s staff as if it were a sacrifice. What could be said
about the relative positions of Vesalius and the skeleton? The entire scene is framed by
fluted Roman columns. What sort of status do they add to the scene? How would the
scene be different if the columns were simple wooden posts?
For comparison, look at two other pictures: The School of Athens, by Rafael (1483–
1520), which accompanies Chapter 15 and was painted only twenty years before the
publication of the Fabrica; and the Portrait of Dr. Samuel Gross (see Chapter 18),
painted 300 years later. What elements do these three works of art share?
For further study, visit: http://vesalius.northwestern.edu.

Despite the growing emphasis on seeing for oneself, early modern medical
educators often argued that seeing inside the human body had no necessary
connection with clinical signs and symptoms of health and disease. In Anglo-
American schools, anatomical dissection did not become a required part of
the curriculum until the late eighteenth or even the nineteenth century.12

Medical Education in the Eighteenth Century

For 500 years, both the content of medical education and the social class of
teachers, students, doctors, and patients varied little. Medicine was largely
understood as a learned profession that was studied in universities, conveyed
in Latin, and divorced from the practical, hands-on work of surgeons,
pharmacists, or other healers. In the eighteenth century, however, practical
rather than theoretical training gained the upper hand, books were published
in national languages, and hospital teaching took hold.13 A physician’s
success now required a first-hand knowledge of health and disease and a
mastery of new academic subjects – physiology, chemistry, botany,
pathology, comparative anatomy, and therapeutics. By the end of the century,
the gap between medical theory and practice had virtually disappeared.
Institutional forms of medical education varied across national lines. In
Germany, clinical study was bound to the university, whereas revolutionary
French reformers instructed students outside university walls. Eighteenth-
century medicine in Europe was also taught in state-run practical schools,
military schools, private medical colleges, and hospitals. In eastern Europe,
specialized schools trained country practitioners, midwives, and
bathkeepers.14 In Great Britain, most university physicians were trained in
Glasgow and Edinburgh, whose medical school was established in 1726 and
soon became a leading institution throughout Europe.15 Both Scottish
medical schools offered a wide range of medical courses – including
midwifery and surgery – along with practical clinical education.
In the early eighteenth century, many ambitious students from North
America, which had no formal medical schools or European-style
universities, studied at Edinburgh. As the absence of universities might
suggest, American medicine left a good deal to be desired. Speaking with
some hyperbole, one colonial doctor put it this way:

In general, the physical Practice in our Colonies, is so perniciously bad,

that excepting in Surgery, and some very acute Cases, it is better to let
Nature under a proper regiment [sic] take her Course ... than to trust to
the Honesty and Sagacity of the Practitioner.... Frequently there is more
Danger from the Physician, than from the Distemper.16

The first medical schools in Canada and the United States were planned,
developed, and staffed by graduates of Edinburgh. Americans John Morgan
(1735–1789), William Shippen Jr. (1736–1808), and Benjamin Rush (1746–
1813) – all graduates of Edinburgh – founded the medical department at the
University of Pennsylvania in 1765. Following the model of Edinburgh, the
Philadelphia school received its income from student fees, accepted a variety
of students, and instituted qualifying examinations. Other schools sprouted up
at Kings College of New York (later Columbia) (1767), Harvard (1782), and
Dartmouth (1797).
However, even as university-based medical education developed in the
United States, the number of their graduates was small, their effectiveness
was limited, and their prestige and authority were challenged by a growing
number of alternative healers. Elite physicians struggled to defend their
privileged status against practitioners of lower socioeconomic status or less
formal education (so-called quacks). During the Revolutionary War for,
example, William Smith wrote that “Quacks abound like Locusts in Egypt,
and too many have recommended themselves to a full Practice and Profitable
Substance.”17 But in North America, the lack of training institutions,
hospitals, or government involvement meant that apprenticeship – not
university-based training – was by far the most common route to medical
practice. Men of widely varied training identified themselves as doctors.
Medical students of all types were considered a coarse, crude, rowdy
bunch.18 And while the line between professionally trained practitioners and
popular healers was drawn legally after the Civil War, actual medical
practices and theories continued to mingle until the great reform of medical
education in the late nineteenth and early twentieth centuries.

Medical Education in the Nineteenth and Early

Twentieth Centuries
In the first half of the nineteenth century, medicine and health care in the
United States encompassed a wide array of practices. Homeopaths, botanists,
abortionists, midwives, and many others plied their trades in the exciting –
and dangerous – world of patient treatment.19 The formal medical education
that did exist was woefully inadequate: so-called proprietary schools, which
often had no formal admission process, were operated by self-appointed
professors who supplemented their meager income obtained from the practice
of medicine. The schools typically consisted of a lecture hall or another small
space – perhaps a room above a store or a pharmacy. Perhaps seven or eight
instructors taught primarily through lectures, without student participation in
clinical work or scientific study in laboratories. After spending two sixteen-
week terms learning from textbooks, students were often awarded a degree
without having touched a patient.20
By mid-century, the American Medical Association and reformers such as
Daniel Drake (1785–1852) were calling for improvements in both education
and practice. No significant change took place until after the Civil War,
which exposed an inept system of medicine whose therapeutics were still
based in Galenic thinking. Union and Confederate soldiers succumbed to
dysentery, malaria, measles, typhoid fever, smallpox, tuberculosis,
pneumonia, bronchitis, scarlet fever, and scurvy – diseases that were
aggravated or caused by squalid living conditions, unsanitary hospitals, and
poor treatment. Doctors, clinging to humoral theory, exacerbated their
patients’ ailments through bloodletting or suppuration (removing pus from a
wound, which was thought to be part of a natural healing process but actually
led to terrible infection in the absence of antiseptic techniques). Amputations
were often fatal. One historian estimates that 110,000 Union soldiers perished
from battle wounds and 225,000 died from disease. For every Confederate
soldier who died in battle, three died from disease. In the face of these
maladies, doctors stood virtually helpless.21
Meanwhile, aspiring American doctors sought elite medical instruction in
Europe, where the most advanced medical research and practice shifted from
Edinburgh to France early in the nineteenth century and later to Germany.
During the 1830s and 1840s, young, upper-class men from the East Coast –
Oliver Wendell Holmes (1841–1935), H. I. Bowditch (1840–1911), and
Lemuel Shattuck (1793–1859) among them – traveled to France in order to
learn from the great Parisian teacher Pierre Louis (1789–1872), who
pioneered statistical methods for evaluating the effectiveness of
bloodletting.22
After 1850, the leading edge of medical science moved to Germany, where
Naturphilosophie (a holistic philosophy of nature) was losing its intellectual
dominance to the empirical sciences of biochemistry, physiology,
experimental pathology, pharmacology, and bacteriology. Elite American
students followed suit. “As regards scientific medicine,” said John Shaw
Billings (1838–1913) in 1881, “we are at present going to school in
Germany.”23 In contrast to Parisian medicine, the Germans prized laboratory
techniques and methods of experimentation over clinical and postmortem
observation. Out of German laboratories came new discoveries in cell theory,
modern physiology, cellular pathology, and microbiology. Between 1870 and
1914, at least 10,000 American students – along with students from all over
the world – studied in Germany or in German-speaking medical schools in
Austria or Switzerland.24 Perhaps the greatest strength of German medical
science was that its laboratories and medical schools were housed in modern
research universities.
In the United States, the modern research university began to appear only
after the Civil War, when an explosion of new knowledge clashed with the
traditional pedagogy of American colleges and universities. Institutions of
higher education were transformed from places for the transmission of
relatively fixed bodies of knowledge into dynamic institutions committed to
the growth of new knowledge. The traditional fields of theology, philosophy,
classical languages, and mathematics faced competition from new disciplines
in the natural and social sciences. As early as 1869, Charles Eliot (1834–
1926), the president of Harvard, argued that scientific studies should foster
“the powers of observation, the inductive faculty, the sober imagination, the
sincere and proportionate judgment. A student ... gets no such training by
studying even a good text-book, though he really master it, nor yet by sitting
at the feet of the most admirable lecturer.”25 The new, scientifically based
research universities gradually assumed educational control over fields
previously served by apprenticeship such as law, dentistry, pharmacy, and
medicine.
Although medical schools had previously been housed in several American
universities – Harvard, Penn, Yale, Dartmouth, and Michigan – they were not
much the better for it. Kenneth Ludmerer (1947–) paints a dim picture of
university medical schools before the reforms of the late nineteenth century.
At Harvard, for example, admission in 1869 was open to all who could pay
tuition. “Only 20% of students held a college degree, and one faculty member
estimated that in 1870 over half the students could not write. As elsewhere,
the curriculum consisted of two four-month terms of lectures.” There were no
written exams, no laboratory or clinical work, and only a loose association
between the university and the medical school. One study described the
school as “a money making institution, not much better than a diploma
mill.”26
Under Eliot, Harvard took its first steps toward reform. Beginning in the
1870s, leading university presidents used their financial and administrative
power aggressively to promote the reform and development of their medical
schools. The modern research university and with it the modern teaching
hospital (which emerged in the same period), provided the scholarly and
clinical infrastructure for the vast overhaul of American medical education
between 1880 and 1920. In this period, inspired by a new model of medical
education, university medical schools replaced proprietary schools. By the
1920s, American medical education and research had become the envy of the
entire world.
What was this new model? And how did it come to dominate medical
education? The initial changes were first introduced by a small but influential
group of men who had studied in Germany and chose the arduous struggle for
reform at Harvard, Michigan, Cornell, and the newly founded Johns Hopkins,
which opened its hospital in 1889 and its medical school in 1893. At Johns
Hopkins, William Osler (1849–1919) and his colleagues – Howard Kelly
(1858–1943), William Halsted (1852–1922), Franklin Mall (1862–1917),
William Howell (1860–1945), and the Dean William Welch (1850–1934) –
stressed that students should be taken out of the lecture halls and placed at the
bedside of living, breathing patients. As Osler put it, “To cover the vast field
of medicine in four years is an impossible task. We can only instill principles,
put the students[sic] in the right path, give him methods, teach him how to
study, and early to discern between essentials and non-essentials.”27
Knowledge gained by experience at the bedside, in other words, was more
reliable than knowledge gained through books or lectures. The new model of
medical education envisioned a careful balance of teaching, research, and
patient care – a balance that would prove impossible to maintain in the
tumultuous economic climate of the later twentieth century.
While the new model of medical education was well developed by the
early twentieth century, only a handful of elite schools could meet its
standards or afford the costs of expanded faculties, laboratories, and clinical
facilities. The catalyst for full-scale reform appeared in 1910, when Abraham
Flexner (1866–1959) of the Carnegie Foundation published his report on
American and Canadian medical education. (Not a single Canadian school
was deemed inadequate.) Flexner surveyed, visited, and evaluated every
medical school in the United States and concluded that most of them were
substandard and underfunded. He recommended closing half of them. By
then, many of his conclusions and recommendations were commonplace but
had not yet been widely enacted. Flexner’s report, together with the Carnegie
Foundation’s money and public outrage over the state of American medicine,
transformed the reform of medical education into an effective social
movement in the Progressive Era.
Flexner’s severe judgment of proprietary schools led to state licensing laws
that excluded for-profit schools from accreditation. He argued that medical
schools should have an admissions process with minimum standards of a high
school education and at least two years of college level or university science.
Flexner also recommended that medical curricula be extended to four years
(two years of basic sciences and two years of clinical study) and that medical
schools be housed in modern universities and given control of clinical
instruction in hospitals. Finally, he agreed with Osler that “doing,” not
thinking, should be the primary skill of the successful medical student.28
Between 1910 and 1935, more than half of all American medical schools
merged or closed. Of the sixty-six surviving MD-granting institutions in
1935, fifty-seven were part of a university. In some schools, senior faculty
were fired and younger, scientifically trained faculty were hired to carry out
the threefold mission of education, research, and patient care.
The Flexnerian model was appealing because it raised standards of training
and improved quality of care. The motivations for reform, however, were not
entirely altruistic, and the consequences were not all sanguine. Outside of
surgery, orthodox medicine in 1910 actually had no new effective
therapeutics to offer. Nevertheless, Flexner recommended excluding schools
of osteopathy, chiropractic medicine, eclectic medicine, and homoeopathy
(what is now called alternative complementary medicine) from accreditation.
These reforms redounded to the economic self-interest of orthodox
physicians, whose income and prestige rose considerably when other forms
of medicine were excluded and licensing laws required the closing of
proprietary schools.
Reform also had negative consequences. Rigid entrance requirements
excluded many potentially good candidates. Others could not afford an
expensive and lengthy university-based medical education, leaving student
bodies composed of upper-class white males. In contrast, some small
proprietary schools had previously accepted women, poorer students, and
even African Americans (in the North). These graduates had subsequently
provided care for people of color, residents of rural areas, and those who
could not afford to pay.
In 1880, women represented approximately 5 percent of American doctors.
Female physicians seemed to have gained a foothold in medical education
and practice.29 However, public opinion sternly resisted the idea of female
medical practitioners, and medical school reform created barriers that were
not dismantled until the 1970s. In 1892, aspiring women doctors had access
to twenty women’s colleges around the country.30 Flexnerian reforms –
especially the decision to link medical education with the university – caused
a sharp decline in female enrollment. By the 1920s, only the Women’s
Medical College of Pennsylvania survived. Women’s schools were
sometimes closed in the belief that women would become better trained in
university medical schools. Although Johns Hopkins was an exception,
women were in fact largely excluded from admission to the new schools.
The Flexner Report accentuated similar, more severe barriers to the
education of African American physicians. In 1900, a black student wishing
to pursue a career in medicine could choose between ten schools across the
country; by 1923, after the release of the Flexner Report, that same student
could only choose between Meharry Medical College and Howard University
The reduction can be attributed to Flexner’s scathing review of black colleges
and his general indifference to their lack of financial resources.31 By 1950,
the number of black practitioners in the United States continued to fall,
reflecting the inability of the two existing schools to train enough students
and to raise financial support. In 1972, African Americans made up 2.4
percent of American medical school classes, a percentage that gradually rose
to 6.5 percent in 2011.32

Medical Education since World War I: Advances

and Challenges
Thanks to the intellectual revolution of the late nineteenth century, a new
class of teacher developed: the full-time professor. Professors with a PhD in
one of the basic sciences focused on research and laboratory work with
students. MD professors found their own balance of classroom teaching,
clinical practice, and research. As medical knowledge expanded, it became
clear that four years of medical education was not enough to produce a
physician whose knowledge and clinical competence prepared them to
practice at the expected standard of care. By the 1920s, the internship – one
additional year of supervised hospital-based experience – became an
expectation, if not a requirement for licensing for every physician. In
addition, students entering a specialized field of expertise (by 1940, there
were already fourteen specialties from anesthesiology to plastic surgery) were
required to complete a residency composed of several additional years of
supervised practical training.33 Internships and residencies, like medical
schools, remained largely the province of white men. African Americans,
women, ethnic, and religious minorities – especially Jews – found the doors
of postgraduate medical training closed to them. Through World War II, there
was not a single surgery residency program that accepted women.
After the Flexner Report, American medical education witnessed an
institutional revolution. Medical schools exploded in size, wealth, and
complexity. Resources were abundant, classes were smaller, and the average
student received far more attention than students in the overflowing medical
classes of Europe. Budgets skyrocketed from an average of $100,000 (in
1910) to $1 million (in 1940) to $20 million (in 1965) to more than $200
million (in 1990).34 Ever since American medical schools, universities, and
teaching hospitals joined forces in the early twentieth century, medical
educators have seen their mission as a three-legged stool: education, research,
and patient care. The stool, however, has not always been well balanced.
Changes of professional power, economic climate, political support, and
public trust have affected sources of funding and the relative priority of
education.
The history of medical education since Flexner falls into three basic
periods: (1) In the first period, from the 1920s to the 1940s, medical schools
saw themselves as primarily in the business of teaching; the needs of learners
took precedence over research and patient care. Second, from World War II
until the 1980s, research, fueled by the rapid growth of federal funds from the
National Institutes of Health, replaced teaching as the most prestigious and
valued aspect of medical schools. The final period, since the 1980s,
witnessed the rise of managed care organizations and competition from
corporate medicine and the need to generate income from faculty clinical
practice, which reduced the funding and time available to educate students.
By the 1950s, medical schools had become an inseparable part of larger
entities known as academic health centers (also known as health science
centers or academic medical centers). Although no two are alike, academic
health centers are best understood as geographic complexes that contain a
number of contiguous, collaborating institutions – medical schools, hospitals,
research facilities, and other professional schools. They transformed medical
education by linking it to the education of other health professionals and by
tying education to large, integrated systems of health care delivery. By the
1990s, there were more than 125 academic health centers, but declining
federal funding, spiraling health care costs, and a competitive health care
market put many of them in financial jeopardy.35 “As the twentieth century
was ending,” Ludmerer writes, “a second revolutionary period in American
medical education had begun. Major characteristics of this period included
the erosion of the clinical learning environment, the diminishing of faculty
scholarship, and the reemergence of a proprietary system of medical schools
in which the faculties’ financial well-being was placed before education and
research.”36 Faculty who had previously been supported to teach and do
research were told they had to devote their time to seeing increasing numbers
of patients. The need to maximize productivity – to increase clinical income
by seeing more patients in less time – displaced the personalized education of
the student and the care of the patient.
Despite these trends, reform-minded educators and scholars since the
1970s have pressed the case for respecting the patient as a whole person
through active listening, compassionate presence, and collaborative decision
making. More recently, the need to educate and support the “whole student”
has also become apparent. Evidence suggests that students, faculty, and
physicians in general suffer from the financial pressures of academic health
centers and the general dehumanization of modern medicine. These
conditions contribute to significant rates of “burnout,” a condition
characterized by emotional exhaustion, depersonalization, and decreased
sense of self-efficacy. In response, programs for faculty health and well-being
have sprung up, and self-care has become an important but still
underappreciated concern for faculty and students alike.37

Case Study: A Medical Student’s Personal Narrative

 In the following excerpt, Karen Kim discusses her frustration, in the first decade of the
twenty-first century, with the demanding schedule of medical school – especially the
lack of opportunities to explore students’ own motivations and experiences.
“As pre-clinical students, we never have any forums in which we can learn about each
other and the incredible wealth of experiences and accomplishments that we collectively
bring to medical school. We have virtually no class time devoted to discussing the whole
slew of motivations that brought us into medicine: belief (at least to some degree) in the
biomedical model; a desire to combat poverty, disease, and racial disparities in care; a
search for prestige or financial stability; personal experiences of prejudice and
discrimination; commitment to our communities. With thirty hours a week of class time
spent sitting in a lecture hall looking at PowerPoint slides, who has the time? As the
workload and stress mount, discussion of anything outside the required basics becomes
superfluous, unimportant, and an added headache. Virtually no one wants to attend a
voluntary two-hour symposium on the ethics of transplanting embryonic tissue into the
brains of Parkinson’s patients – after all, who wants to spend extra time and energy
caring about stuff we aren’t tested on?”38

1. What seems to be the essential problem that Karen struggles with?

2. Can you identify with Karen’s challenges? If you are a medical student, is your
own experience similar to or different than Karen’s?
3. Do you agree with Karen that medical education should promote student self-
knowledge by attending to the “slew of motivations” that brings them to the
profession?

In 2010, the Carnegie Foundation for the Advancement of Teaching –

which sponsored the Flexner Report of 1910 – published another major study
of medical education in the United States. The new report, based on research
in eleven medical schools and three non-university teaching hospitals, named
four key deficiencies in contemporary medical education. Its first finding
reflects the limits of the Flexnerian model a century after its adoption:
“Medical training,” wrote the authors, “is inflexible, overly long, and not
learner-centered.”39 A second finding described the poor coordination
between excessive, formal “book” learning (during the first two years of
basic sciences) and experiential learning (during the last two years of clinical
work). The report’s third finding noted the lack of holistic learning about
patients’ experiences and the absence of teaching about the “broader civic
and advocacy roles of physicians.” Finally, the report emphasized that the
“pace and commercial nature of health care often impede the inculcation of
fundamental values of the profession.”40
 The Carnegie Foundation’s 2010 Report identified serious threats to
humanistic forms of learning, knowing, valuing, and caring. These threats
have become endemic in schools that must now function within a
technocratic, reductionistic, and commercialized health care system. But they
are not “new” or immutable. Before the Flexnerian marriage of medical
education with teaching hospitals and the modern university, proprietary
schools in the nineteenth century were run primarily as businesses. Likewise,
today’s concern about eroding professional values has its historical
counterparts in eighteenth-century Britain and nineteenth-century America,
when modern professional ethics arose to counterbalance rampant self-
interest and competition for patients. And as we have seen, the tension
between book learning and clinical learning is as old as Aristotle.
The new Carnegie Report is both a reflection of and an inspiration for a
broad contemporary movement to reform medical education. The Report and
the movement rightly call for the cultivation of professional identity
formation – one of the key themes and purposes of this textbook. The Report
also advocates a better connection between formal knowledge and clinical
experience; facilitation of lifelong learning and critical thinking; more
flexible, individualized, and outcome-based ways to advance toward
completion of a medical degree; and more engagement with population
health, patient safety, and quality improvement. Interprofessional education –
that is, education involving health professional students from, for example,
medicine, nursing, dentistry, pharmacy, and so on – is yet another key
element in the reform of contemporary medical education. Learning to value
and communicate with other professions and to work collaboratively in
health care teams is increasingly viewed as essential to the highest quality of
care.41
Since the late twentieth century, faculty and students – as well as patients –
have become subject to damaging pressures in contemporary academic
medicine and health care. Yet there are many encouraging responses, ranging
from programs on faculty health and well-being to renewed emphasis on
mentoring students and supporting development of their professional identity.
Medical humanities attends to these issues by doing what it does best:
facilitating active engagement with literature, history, ethics, the arts, and
with spiritual/religious resources. Topics such as the ethics of health policy,
the history of medicine, the experience of suffering, and the nature of healing
help individuals address aspects of medicine and science where technical
mastery is impossible, ethical problems are difficult, and existential meaning
is hard to come by. Lectures, seminars, workshops, performances, and film
screenings allow students and faculty to reflect, replenish, and renew
themselves. We suggest that humanizing patient care in the future will require
recovering and supporting the humanity of students and faculty.

Summation
This chapter explored the history of medical education in the west. Beginning
with a discussion of how medical knowledge was established and transmitted
in antiquity, it examined how many important medical texts were translated
into Arabic in the Middle Ages; how scholars rediscovered and rethought
these texts in the Renaissance; how medical education evolved during the
eighteenth and nineteenth centuries to include new academic subjects such as
physiology and chemistry; and how, by the middle of the twentieth century,
medical education came to be associated with academic health centers. Then,
with a focus on a 2010 Carnegie Foundation Report, it considered some of
the challenges facing medical education in the twenty-first century. Overall, it
emphasized that medical education is influenced by a complex network of
interests, and that learning about these interests can help us to evaluate how
and why we are educating doctors.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. We have seen how the balance between “knowing” (book learning)
and “doing” (hands-on experience) has changed over time. As a
student, how do you strike a balance between these two ways of
learning?
2. Do you think one form of learning is more important than the other?
3. How do you feel about the increasing role of specialization in
contemporary medical education?
4. How do you think about your own needs as an undergraduate or
 medical student or as a physician involved in continuing medical
education?

Suggested Writing Exercise

Imagine that you are training to be a doctor during the medieval period. What
kind of healer would you like to be? Would you train to become a midwife?
A barber? A learned physician? Write for seven to ten minutes on the
potential difficulties that you might face during the period.

Suggested Viewing
The Interns (1972)
Scrubs (2001–2010)
Still Life: The Humanity of Anatomy (2001)

Further Reading
Arthur Hertzler, The Horse and Buggy Doctor
Sylvia Plath, “Two Views of a Cadaver Room,” in The Collected Poems
Samuel Shem, House of God

Advanced Reading
Kenneth Ludmerer, A Time to Heal
Kenneth Ludmerer, Learning to Heal
Solomon Posen, The Doctor in Literature: Satisfaction or Resentment?

Journals
International Journal of Medical Education
Journal of Continuing Education in the Health Professions
Medical Education
Online Resources
ACGME: Accreditation Council for Graduate Medical Education
http://www.acgme/org
Alliance for Continuing Education in the Health Professions
http://www.acehp.org/imis15/acme/
Liaison Committee on Medical Education
http://www.lcme.org/
Society for Continuing Medical Education
http://www.sacme.org/
World Medical Association
http://www.wma.net/en/10home/index.html
 4 Technology and Medicine
Man has, as it were, become a kind of prosthetic God. When he puts on
all his auxiliary organs he is truly magnificent; but those organs have
not grown on to him and they still give him much trouble at times....
Future ages will bring with them new and probably unimaginably great
advances ... and will increase man’s likeness to God still more. But ...
we will not forget that present-day man does not feel happy in his
Godlike character.1
– Sigmund Freud

Abstract
This chapter explores the history of medical technology. Beginning
with a discussion of the ancient and medieval distinction between
medicine and surgery, it examines how, before the eighteenth
century, doctors primarily obtained information from observation and
from patients’ narrative accounts of illness; how, by the nineteenth
century, these accounts came to be supplemented by the invention of
such new technologies as the stethoscope; and how the proliferation
of medical technology in the twentieth century led to both great
advances and serious ethical, political, and economic questions. Then,
with a focus on contemporary molecular biology, genetics, and
biotechnology, it considers some of the promises and challenges of
medical technology in the twenty-first century.

Introduction
Advances in medical technology have led, as Freud predicted, to previously
unimaginable diagnostic and therapeutic devices. Nevertheless, we are not
always happy with our God-like inventions. Often we think of technology as
an autonomous force that drives change of its own accord – sometimes
leading to perfection, sometimes running roughshod over personal and
cultural concerns. But technology is always used and defined in specific
social contexts by individuals and institutions with their own values and
interests. Choices are made. Technologies are adopted and resisted, causing
unintended or unforeseen consequences.
This chapter traces the history of medical technology, following both its
triumphs and its shadows. We define technology, following Stanley
Reiser(1938–), as “material inventions developed to extend or replace human
capabilities.”2 As early as the invention of the stethoscope in 1819, new
technologies have – literally and figuratively – come between doctor and
patient. By the early twentieth century, some patients and doctors were
concerned that medicine had become impersonal. The 1960s made it clear
that the life-saving technologies of medicine had outstripped the moral
resources needed to use them wisely. Technology appeared to be the master
rather than the servant of medicine and the health professions. New fields of
scholarship and expertise emerged to wrestle with ethical issues in medical
technology.
More recent advances carry similar promises and dangers. Genetic
engineering seeks to prevent or cure inherited diseases as well as to enhance
or select for certain “positive” traits. It also carries ethical dilemmas and
religious concerns about control, access, and the consequences of altering the
human genome or “playing God.” Finally, we touch on the emerging digital
revolution in medicine with its great potential for individualized health care
and its unknown impact on costs, power, care, and confidentiality in the
doctor-patient relationship.

Medical Technologies from Antiquity to 1800

The earliest known form of surgery, performed more than 10,000 years ago
in Russia and Neolithic Europe, was a brain operation known as trepanation.
Practitioners apparently bored a hole into the skull of a “patient” with a sharp
tool in order to expose the brain.3 The purposes of this fascinating technique
remain unclear: It may have been to relieve pressure on the brain that resulted
from internal bleeding, to expel evil spirits from a sick person, or both.
Whatever its precise aim, trepanning demonstrates that surgical techniques
have been used to mitigate pain, suffering, and infection since the beginning
of civilization.
Extant manuscripts from ancient India and Egypt reflect an impressive
range of medical knowledge. The Susruta Samhita (800 BCE), an ancient
surgical text, described the procedures of cutting for stone; removing
cataracts; extracting arrowheads, splinters, or other articles of war; and
examining human corpses.4 Ancient Egyptian practitioners also had a
plethora of instruments that were used for surgery and embalming: straight
scalpels, lancets, curved knives, and sharpened stones.5
As we have seen, Greek and Roman medicine was organized around
humoral theory, which viewed health in terms of balance and harmony.
Although the Hippocratics preferred to restore equilibrium through a healthy
environment and good lifestyle, doctors were nonetheless equipped with
surgical instruments in case of emergencies. The practice of bloodletting, for
instance, started with Hippocrates (c. 460–377 BCE) and became a mainstay
of Galen (131–201), who wrote extensively of its benefits. In order to open a
vein, practitioners used a lancet, or double-sided blade, to cut the patient. A
more conservative method, “cupping,” involved scratching the surface of the
skin and applying a horn or cup to induce a vacuum, which gradually
suctioned a portion of the patient’s blood.6
While surgery and medicine are closely allied today, ancient and medieval
surgery were considered more a trade than a profession, and surgeons were
often more allied with barbers than with physicians. This ancient divide was
reinforced by Pope Innocent II’s (? –1143) religious injunction in 1139 that
forbade the clergy’s participation in surgery; it was also reflected in the
reluctance of university-trained physicians to operate directly on the patient.
The medieval barber had tools for bloodletting, amputation, treating war
wounds, and stanching blood flow (the barber’s pole, with red and white
strips symbolizing blood and bandages, still survives today).
The authority of barbers and surgeons was a matter of considerable
confusion and controversy. In medieval England and the German states, an
alliance of barbers and surgeons led to a kind of hybrid occupation. In Paris,
when the College of St. Cosme was established in 1210, physicians and
surgeons united against barbers. When anatomy was introduced into the
curriculum, a physician instructed from a Galenic text while a surgeon
performed the dissection.7
In spite of the traditional divide, elite medieval surgeons whose texts have
come down to us were at considerable pains to align surgery with learned
medicine. Henri de Mondeville (c. 1260 –1316), for example, studied and
lectured at Montpellier, Paris, and Bologna; he also served as a military
surgeon to the French royal family. De Mondeville’s views on bathing and
healing of wounds drew ire from those who followed the Hippocratic therapy
of creating and draining pus through wound salves made of plasters and
powders. Guy de Chauliac’s (1298–1368) Chirugia magna [The Great
Surgery] (1363) was an encyclopedic work that contained thousands of
references to other works in its attempt to demonstrate that surgery was a
learned art. “The conditions necessary for the surgeon are four,” wrote de
Chauliac: “first, he should be learned, second, he should be expert, third, he
must be ingenious, and fourth, he should be able to adapt himself. It is
required ... that the surgeon should know not only the principles of surgery,
but also those of medicine in theory and practice.”8
Until the advent of anesthesia, a surgeon was required to “cut like an
executioner,” since the shock, pain, and blood loss of nightmarish
amputations and operations led more often to death than to recovery.
Nevertheless, despite a lack of anesthetic or antiseptics and a limited
knowledge of human anatomy, medieval surgery had its share of successes.
While earlier scientists had experimented with magnifiers, Dutch scientist
Cornelius Drebbel (1572–1633) presented the first compound microscope,
which revealed phenomena that were previously invisible to the naked eye.
By the end of the century, Italian physician Marcello Malpighi (1628–1694)
used the microscope to produce elaborate descriptions of human
microanatomy, including the structure of the lungs, spleen, and kidney.9
Meanwhile, English scientist Robert Hooke’s (1635–1702) Micrographia
(1665) contained the first description of the cell and its biological structure.
Until the nineteenth century, the microscope largely remained an
instrument used by scientists rather than physicians. It also had its share of
medical critics – Thomas Sydenham (1632–1689) and John Locke (1602–
1734) among them – who argued that the microscope distracted doctors from
the primary task of tending to the patient.10 Proper diagnosis, according to
Sydenham, involved clinical observation and attention to the patient’s
descriptions of his or her symptoms, pains, and ailments. Indeed, before and
up to the seventeenth century, the patient’s narrative account of illness was
the primary way doctors obtained data. Sometimes the patient gave his or her
account in person; sometimes the patient sent a letter. Many letters resembled
the one that John Symcotts (c. 1592–1662), an English doctor with a large
practice in England, received from one of his patients:

Sir,
I have a great burning pain about the reins of my back, which strikes up
to the top of my belly, and a wonderful ill scent arising from my
stomach. I do desire your best advice. In my hankering for physic I have
taken so much all ready and it has done me no good, and therefore I
would desire you to send me no physic but some oil or some cooling
thing, for I am very sore about my back that I cannot stand upright. The
greatest pain of all is my left kidney.11

The focus of these letters is a story of the illness as experienced by the

patient. If the patient’s narrative was lost, as Sydenham and Locke feared,
then the doctor’s full capacity to heal might be lost with it.
Nevertheless, new diagnostic techniques and instruments led doctors to
discount the value of the patient narrative. In 1761, Austrian physician
Leopold Auenbrugger (1722–1809) discovered two methods of listening for
chest disease that, in his opinion, would replace the patient’s unreliable and
imprecise account. The first method, called percussive diagnosis, involved
placing one’s ear to the patient chest and tapping lightly; the second method,
“auscultation,” involved listening to the patient’s breathing by placing an ear
on the patient’s chest. In both cases the physician bypassed the patient’s
personal narrative in favor of his own aural senses, which could be used to
make a diagnosis. In addition, as we have seen in Chapter 2, Morgnani’s
monumental On The Seats and Causes of Disease (1761) detailed the
appearance of pathological lesions in the human body. For Morgnani, disease
could only be understood if it was physically traced and observed on the
postmortem human body. Taken together, Auenbrugger’s and Morgnani’s
achievements anticipated the empirical method of modern science that would
privilege the specialized opinion of the doctor over the subjective and
unreliable accounts of the patient.12

The Birth of Modern Medical Technology

As we have seen, the practice of medicine long depended on the physician’s
observations and the patient’s description of his or her symptoms. In the
nineteenth century, physicians increasingly used manual diagnostic
techniques, beginning with the invention of the stethoscope. The stethoscope,
which French physician Rene Laennec (1781–1826) invented in 1816,
allowed him to listen to heart sounds much more distinctly than when he put
his ear to the patient’s chest – a practice that was already impeded with
female patients by the cultural norms of feminine modesty. Laennec coined
the phrase “mediate auscultation,” or indirect listening, to distinguish the use
of the stethoscope from Auenbrugger’s practice of “immediate auscultation,”
or putting one’s ear directly on the patient’s chest.
While the stethoscope represented a revolutionary aural method of
diagnosis, the opthalmoscope, invented by Hermann von Helmholtz (1821–
1894) in 1851, represented a similar advance in visual diagnosis. Thanks to
this instrument, which could detect light rays entering and leaving the pupil,
scientists and physicians could see a clear and detailed image of the retina.13
By 1894, the American Medical Association mandated that Helmholtz’s
instrument, which detected astigmatisms and other visual disorders, be used
for all patient examinations. The laryngoscope, designed by Dr. Ludwig
Türck (1810–1868), allowed observation of the structure of the larynx.
Whereas previous investigations of the vocal chords relied on sound –
chronic hoarseness, coughing, or strained breathing – doctors could now peer
into the patient’s mouth and, with the aid of mirrors, observe the larynx. Just
as Auennbrugger and Laennec had listened for disease, Helmholtz and Türck
looked for it. By the 1860s, similar new devices appeared that allowed
examination of the bladder, rectum, and stomach.
Other devices, all capable of analyzing the functions of organs and
producing extensive graphs, represented a further shift away from subjective
observations (pulse feeling, listening to the heart or the lungs) to objective
data that could be recorded and organized. In 1835, the sphygmometer
produced numerical results for blood pressure. The spirometer, arriving a few
years later in 1846, recorded the amount of air inspired and expired by the
lungs, while the kymograph, introduced in the 1840s, monitored blood
pressure. By the turn of the century, the electrocardiograph, thermometer, and
the galvanometer performed similar functions. The advent of data-storing
machines undercut not only the personal accounts of the patients but also the
clinical observations of the doctors themselves.
During the early nineteenth century, the pain experienced during surgery
was often so excruciating that many patients chose possible death over
certain agony.14 But the development of anesthesia and antiseptics reduced
the pain and infection of surgery. In the early 1800s, pharmacist Friedrich
Sertürner (1783–1841) successfully separated morphine from opium.
Morphine, while highly addictive, has become widely used in the treatment
of acute and chronic severe pain. In 1846, American dentist William Morton
(1819–1868) gave the first public demonstration of ether as a general
anesthetic to a young man who suffered from a tumorous growth. Shortly
after the operation ended, the patient declared that he had felt no pain.15
Although the medical community was initially incredulous about the use of
anesthesia – how, after all, could pain be separated from incisions? –
Morton’s successful demonstrations laid the groundwork for modern hospital
surgery and the development of the new medical specialty of anesthesia.
To be sure, anesthesia was not a panacea. Its rapid diffusion did not mean
the end of agonizing surgery for all patients. In addition, the great power of
anesthesia created anxiety over its potential uses and abuses. What if
anesthetics gave physicians too much power over their patients? The new
discovery threatened to overturn the vital checks and balances governing
professional authority. One possible danger was the loss of the patient’s
supervisory power over the operation; unanesthetized patients could protect
themselves against medical carelessness, including the ability to make sure
that the right tooth, growth, or limb was being removed.16
Just as anesthesia reduced pain, so did the discovery of antiseptics reduce
infection. Joseph Lister’s (1827–1912) Antiseptic Principle of the Practice of
Surgery (1867) introduced antiseptics into surgery. Using carbolic acid as an
agent of antisepsis, which destroyed the invading bacteria, Lister treated
patients at an unprecedented rate of success: only one of his first eleven
patients died and the others recovered.17 He also urged doctors to use rubber
gloves, thoroughly wash medical instruments, and shave the hair around
surgical sites, all of which contributed to the dramatic decrease in wound
infections and mortality.
The use of anesthesia and antiseptics also revolutionized birthing practices,
which had long been plagued by painful deliveries and infection-related
deaths. A particularly dangerous type of infection, puerperal (afterbirth)
fever, accounted for about half of all deaths related to childbirth, and was
second only to tuberculosis in killing women of childbearing age. What made
matters worse were the unsanitary doctors themselves who brought the
disease to birthing women. Gradually, doctors realized that they were
endangering the lives of pregnant women and took pains to sanitize
themselves while applying anesthesia. By the end of the nineteenth century,
some form of anesthesia (ether or chloroform) was used in over half of
medically attended births.18
Doctors were also eager to hospitalize birthing women, arguing that
hospitals reduced the chances of infection. Reformers like Lister and the
famous nurse, Florence Nightingale (1820–1910), stressed the importance of
having a large space, much light, and fresh air. Doctors’ arguments about the
cleanliness of hospitals gradually carried more weight, and by the 1920s the
site of childbirth was steadily shifting from the home to the hospital.
Maternal mortality, however, did not decline until the 1930s.19 While we
might not consider hand washing and the use of sterilized gloves
“technologies,” these practices have saved far more lives than any other
medical advance.20
The widespread use of photography in the nineteenth century, along with
the trend toward visual representation of medical knowledge, were combined
in the X-ray machine – a spectacular technology that German physicist
Wilhelm Roentgen (1845–1923) invented in 1896. After becoming interested
in cathode rays (later known as electrons), Roentgen discovered new forms of
radiation that could pass through solid objects. These rays could then be
captured on photographic plates, which he demonstrated with a bony image
of his wife’s hand. X-ray machines easily detected bullets, broken bones, and
solid objects lodged within the body. In addition to its spectacular capacity to
“see” inside the human body, X-ray images could also be viewed by a group.
Whereas the opthalmascope and laryngoscope could be used only by one
person at a time, the X-ray machine produced large photographic plates
which allowed several people to observe, interpret, discuss, and teach what
they saw.21
In American society, the X-ray machine took its place alongside the
dazzling array of technological innovations in the late nineteenth and early
twentieth centuries. The phonograph allowed people to listen to music
without musicians; the telephone, the automobile, and the airplane enabled
people to converse or travel rapidly across great distances; photographs made
it possible to see family members who were not present. Culturally, the X-ray
was seen as a form of beauty and prestige as well as an image of death and a
threat to privacy. In Thomas Mann’s (1875–1955) The Magic Mountain
(1924), the character Hans Castorp cherishes the X-ray image of his lover:
“He drew out his keepsake, his treasure ... a thin glass plate which must be
held toward the light to see anything on it. It was Claudia’s X-ray portrait ...
How often had he looked at it, how often pressed it to his lips.”22
X-ray machines also turned out to be a useful platform for allopathic
physicians to assert their professional dominance over homeopaths,
chiropractors, and other practitioners of health care. However, even among
mainstream allopaths, the reception of the X-ray was far from uniform.
Although many urban American hospitals purchased an X-ray machine
within a few years, it took more than a decade to incorporate them into
clinical care. Some medical authors argued that X-rays rarely provided useful
information that could not be obtained through other methods. When
President McKinley was shot in 1901, for example, his surgeons decided not
to use X-rays to locate the bullet. Even in the diagnosis of fractures, the X-
ray machine encountered skepticism. “No one will for a moment suppose,”
wrote one author, “that the vacuum-tube and induction-coil will, or ever can,
displace the sense of touch guided by a well-balanced and experienced
mind.”23 Other reasons for the slow adoption of X-rays in patient care were
the absence of clinical X-ray units and storage space, the lack of physicians
specifically trained to interpret results, and the lack of standardized forms for
reporting them.
Technology, as we have seen, is not simply an impersonal force that drives
historical change for better or for worse. For all its capacities, the X-ray
machine did not simply burst on the medical scene like a diagnostic savior.
The invention and uses of the X-ray, rather, were embedded in a complex
social and cultural context – in power relationships within the healing
professions, conflicting points of view among physicians, the social and
administrative structure of the new scientific hospitals, and broader cultural
meanings and responses.24 The X-ray raised pressing questions: Who owned
the new machines and images? Who was authorized to interpret them and bill
for their creation and clinical use? And who had access to them?

Twentieth-Century Medical Technologies

At the turn of the twentieth century, American medicine shed its reputation as
a decentralized institution dominated by country doctors and, instead,
increasingly organized itself around hospitals. As we saw in Chapter 1, the
number of urban hospitals grew rapidly from less than 200 in 1873 to almost
5,000 in 1923.25 The availability of anesthesia, antiseptics, and record-
keeping machines – not to mention medical experts – made hospital visits
more attractive. By 1925, the urban hospital was actively and self-
consciously based on science. Hospitals were becoming complex institutions
whose spatial structure and organization were transformed. Ward laboratories
near the patients’ beds made it easier for house officers to test their patients;
clinical laboratories were active day and night. The new hospitals built an
elaborate and often bewildering structure of operating rooms, in-patient
rooms, waiting rooms, and areas for consultation.
The patient’s experience changed radically as well. Rather than seeing only
one doctor, patients visited a greater variety of specialists. The
ophthalmologist looked into patients’ eyes; the dietitian decided what patients
could eat for breakfast; medical students, busy learning their trade,
questioned patients and listened to their hearts, probed their abdomens, and
tested new scientific and therapeutic devices. Even the person who wheeled
patients around to their various tests represented a new kind of worker.26
As hospitals increased in size and complexity, so too did the effort to
establish sound patient records. Most hospital records (when they were even
written down at all) were incomplete and confusing. Writing of her
experience in European hospitals in the 1850s, Florence Nightingale had
complained that “in all hospitals, even those which are best conducted, there
is a great and unnecessary waste of life ... in attempting to arrive at the truth, I
have applied everywhere for information, but in scarcely an instance have I
been able to obtain hospital records fit for any purposes of comparison.”27 To
make the problem worse, many doctors believed that a handwritten account
of the doctor-patient encounter were laborious and unnecessary.
Massachusetts General Hospital in Boston was among the first to develop
effective methods for systematically detailing and preserving patient records
and began publishing “Case Records of the Massachusetts General Hospital”
in 1915. In 1918, the American College of Surgeons (ACS) called for the
reform and standardization of patient record keeping. In order to improve
standards of care, those who applied for membership in the ACS were
required to submit records of one hundred surgeries.28 Raymond Pearl
(1879–1940), a statistician from Johns Hopkins, aided the transition from the
sketchy reports of nineteenth-century hospitals to the scientific, statistically
oriented reports of the modern medical era. Thanks to quantitative
measurements made possible by the new data-keeping machines, patient
records could, in Pearl’s opinion, grow into an exact science. But his plan
was not foolproof. One significant problem involved the cost of hiring
librarians and professional statisticians to compile and analyze increasingly
complex data.
In the twentieth century, new machines aimed at prolonging patients’ lives
increasingly appeared within hospitals. The mechanical ventilator or, “iron
lung,” was invented in the 1920s in order to temporarily assist the respiration
of patients who stopped breathing or whose breathing was severely
compromised from drowning, electric shock, or an accidental drug overdose.
These respirators, which required that patients be put into large iron tanks,
were especially helpful to polio victims who were struggling to breathe. “Of
all the experiences the physician must undergo,” wrote J. L. Wilson of
Children’s Hospital in Boston, “none can be more distressing than to watch
respiratory paralysis in a child with poliomyelitis – to watch him become
more and more dyspneic [air hungry], using with increasing vigor every
available muscle of neck, shoulder and chin – silent, wasting no breath for
speech, wide-eyed, and frightened, conscious almost to the last breath.”29
By the 1930s the iron lung assisted such children, most of whom could be
weaned from the machine as their own lungs began functioning again.
Meanwhile, anesthetists in operating rooms developed a new form of assisted
respiration known as intermittent positive pressure ventilation (IPPV), a
technique that involved cutting into the patient’s windpipe, inserting a tube,
and pushing air directly into the lungs. The procedure was dramatically
expanded in 1952, when a polio outbreak swept through Copenhagen,
infecting more than 900 people. The chief physician at Bledgdam Hospital
ordered the use of manual compression bags to push air into the lungs of
hundreds of patients. Thanks to the round-the-clock efforts of its doctors and
medical students, the mortality rate dropped from 80 percent to 40 percent.
Soon, machines known as respirators replaced manual compression and were
operating throughout Europe and the United States.
The iron lung introduced unanticipated issues of access and cost that would
increasingly plague medical technology throughout the twentieth century. An
iron lung cost more than two thousand dollars in 1930, creating a shortage of
machines in hospitals and burdensome costs for patients and insurance
companies. During polio epidemics, which patients should receive treatment?
Who should decide and on what criteria? These problems intensified with the
development of the artificial kidney, which could pass blood through a
membrane that separated body waste from blood cells, thereby preventing
death from kidney failure. This procedure, known as dialysis, gradually
moved from being a short-term treatment for patients in crisis to a long-term,
far more costly procedure.
When the Seattle Artificial Kidney Center opened in 1961, expenses and
patients far outnumbered machines and the capacity to treat – a situation
mirrored across the country, where 5,000–10,000 patients needed dialysis. In
the fall of 1972, Congress passed a bill authorizing Medicare payment for all
patients with chronic kidney disease. While the bill solved the immediate
ethical problem of who should receive a scarce medical resource, it also put
the United States on the road to rising health care expenditures, which
increased from one in twenty dollars in 1960 to one in six dollars in 2006.30
These increases were not only unsustainable, they also threatened to reduce
funding for other social needs such as education, infrastructure, and
environmental protection. Paradoxically, the introduction of new medical
technologies has actually led to fewer patients getting access to those
technologies. Despite the belief that new medical technology saves more
lives and makes us healthier, the introduction of such technologies has been
coterminous with an increase in health disparities, which means that more
expensive medical care has been delivered to fewer and fewer patients.31
 In addition to problems of cost, health policy, and social justice, new
technologies also ushered in highly controversial ethical problems of decision
making at the bedside. When respirators came into widespread use in Europe
and the United States, they became the core technology of what came to be
called “intensive care” units, which included cardiac monitoring, intravenous
lines, nasogastric tubes, catheters, and other devices. Physicians quickly
learned when and how to use these technologies, but no one had any
experience turning them off.

Figure 4. Sleeping, 2012, Michael Bise 1976–, Courtesy Moody Gallery, Houston, TX
© Michael Bise 2012.

Compare this picture with the title page of the Fabrica. Have tubes and wires
displaced the crowd that observed the cadaver? The artist has rendered the peculiarity of
each device to a level of detail similar to the figures surrounding the dissection. But
where is the human skill and expertise Vesalius represented? And where is the prospect
of human mortality as poignantly represented by Death’s skeleton?
Consider the difference in the point of view of this picture and the Fabrica. Vesalius’s
gaze is directed toward us; we have the privileged view of the dissection. The
 composition of the title page honors the viewer, the person to whom Vesalius dedicated
his work, the Emperor Charles V, with these words:

I beseech your imperial Majesty with all reverence on bended knee to permit this
youthful work of mine ... to remain in the hands of mankind under your leadership,
splendor and protection ....

As we view Michael Bise’s work, where are we, who are we, what is being asked of
us? For artists today, medicine continues to be an aspect of humanity to explore. Michael
Bise is represented by Betty Moody Gallery in Houston. In addition to galleries,
resources for contemporary art include art museums – especially those with libraries
with art magazines – as well as books and online resources.

In 1958, Dr. Bruno Haid, chief of anesthesia of surgical clinic at University

of Innsbruck, consulted Pope Pius XII (1876–1958) for ethical guidance on
the use of respirators. How should caretakers proceed when, after being saved
from death, a patient lay unconscious in a respirator for weeks, months, or
even years, suspended in limbo between life and death? What to do if a
patient’s family wished to remove him or her from life support? How is it
possible to determine the precise moment of death? It was clear that there
were no obvious answers to these dilemmas. The Pope concluded that, in
cases of deep unconsciousness or when all hope for recovery was gone,
neither physicians nor family members were obligated to keep the patient
alive through artificial respiration.32 The Pope’s discussion ushered in a new
era of religious and secular ethical thought and deliberation about the use of
medical technology at the edges of life.

Current and Future Medical Technologies

At the dawn of the twenty-first century, medical research and the expansion
of bioengineering continued apace in every direction. The advent of modern
molecular biology, genetics, and biotechnology identified the genetic causes
and potential treatments for many inherited diseases.33 In therapeutic cloning,
for instance, human embryos were cloned to extract stem cells that could be
used to repair tissues and organs. In addition, the field of nanomedicine
began devising innovative methods to fight cancer cells on the submolecular
level. In one example, special gold-coated particles called nanoshells have
been designed to absorb near-infrared light, causing the particles to heat up at
specific frequencies that, in turn, kill cancer cells.34
The existence of these and other cutting-edge technologies, exciting as they
are, may only hint at future possibilities. Some scientists argue that
nanotechnology will be capable of building fleets of nanorobots that will
remove obstructions in the circulatory system, battle cancer cells, or replace
faulty body parts.35 Other theorists of technology, most notably the
controversial futurist Ray Kurzweil (1948–), envision a world utterly
transformed by technology. Kurzweil argues that human-created technologies
will culminate in a stage of human history called the “singularity” during
which “the pace of technological change will be so rapid, its impact so deep,
that human life will be irreversibly transformed.36 If Kurzweil is correct, a
host of unimaginable technologies will create a world in which distinctions
between humans and machines, reality and virtual reality, or even life and
death disappear completely. The union of man and machine would surely
give new meaning to the “prosthetic man” that Freud (1856–1939)
envisioned almost a century ago. For the time being, however, nanorobots
and the singularity still exist in the realm of science fiction.
Partly because of biomedical breakthroughs in diagnosis and treatment, the
technological problem of keeping patient records grew worse throughout the
twentieth century for health care professionals and organizations from small,
private clinics to large, public hospitals. Put simply, doctors and care
providers suffered from too much information. In the 1960s, a veritable
explosion of data came from exams, tests, histories, and medical specialists,
all of which produced more information than could be meaningfully
interpreted. There was a dire need to bridge the gap between the finite
capacities of doctors and the influx of information that resulted in hefty,
hundred-page case files.
The development of the computer in the second half of the twentieth
century raised hopes that the glut of information could indeed be managed.
By the 1980s, the electronic medical record, or EMR, was touted as a
comprehensive health information system that stored, retrieved, and modified
patient records. A 1991 report by the National Academy of Science’s
Institute of Medicine called for the transition from a private, paper-based
method to a public, electronic system of record keeping. In his 2004 State of
the Union address, President George Bush similarly called for a “health
information technology infrastructure [that] reduces health-care costs
resulting from inefficiency, medical errors, inappropriate care and incomplete
information.”37 During the presidency of Barack Obama, the EMR had yet to
deliver on all the claims made for it. Even with access to apparently endless
electronic sources of information and hyperefficient applications (the iPad
and smartphones) physicians continue searching for the best ways in which to
preserve the medical information – and the confidentiality – of their patients.
Among the most far-reaching changes in medicine and health care are
those being driven by the digital revolution. In The Creative Destruction of
Medicine, cardiologist and visionary Eric Topol hails the “superconvergence”
of digital technologies that he believes have only begun to transform
medicine and health care.38 Since the 1970s, several major digital advances
have revolutionized daily life: the cell phone, the personal computer, the
Internet, digital devices, and social networks. Topol sets these technologies
alongside their medical counterparts – wireless sensors, genomics, imaging,
and information systems. He foresees a radically new individualized
medicine that will empower patients and create better and less expensive
health care. In the second decade of the twenty-first century, smartphones, for
instance, are already combining diverse functions from telephone, e-mail, text
messaging, web surfing, picture taking, and storing to library, translator, and
flashlight. And they are just beginning to be “loaded for medicine,” using
wireless sensors to display vital signs, conduct laboratory analyses, create
ultrasound images, and convey this information to both patients and their
physicians.
Another example of digital, wireless medicine is the pocket-sized mobile
echocardiogram which Topol uses to examine all of his patients instead of a
stethoscope. At minimal cost, this device immediately produces images and
data that can foster discussion between doctors and patients. Here, it seems, is
a technological change that can create communication rather than distance
between patient and doctor. Many questions remain, however. With so much
information about themselves at their fingertips, will patients become more
equal partners in medical decision making? Or will they be overwhelmed by
a glut of data, leaving them as dependent as ever on medical expertise?
Topol’s view is based on the notion that it is now possible to digitize
human beings in various ways. It is not only that medicine can determine the
molecular sequence in each person’s genome. It can also remotely and
continuously monitor blood pressure, body temperature, brain waves, oxygen
concentration, and create three-dimensional images of organs, bones, and
tissues. The problem with Topol’s notion of digitizing human beings,
however, is that it leaves out the moral and spiritual dimensions of being a
person. One cannot digitize the experience of suffering or the telling of a life
story or the need for meaning. It remains to be seen whether, once doctors
routinely digitize a patient’s anatomy and physiology, they will be able to
care for them as individuals.
In this brave new world that blurs the lines between humans and
technology, medicine will face many questions. What, for example, happens
to the relationship between doctor and the patient? How do hospitals adopt
new technologies without losing sight of the humanity of those who need
care? How do governmental institutions even begin to regulate burgeoning
and controversial new technologies? How do doctors and patients use the
knowledge gained from the digital revolution mindfully and justly? These
questions have no clear answers. Nonetheless, they need to be raised
continually. In a report on emerging biotechnologies, the president’s Council
on Bioethics put the matter succinctly by reminding us that, in order enjoy
the benefits of biotechnology, “we will need to hold fast to an account of the
human being, seen not in material or mechanistic or medical terms but in
psychic and moral and spiritual ones.”39

Summation
This chapter explored the history of medical technology. Beginning with a
discussion of the ancient and medieval distinction between medicine and
surgery, it examined how, before the eighteenth century, doctors primarily
obtained information from patients’ narrative accounts of illness; how, by the
nineteenth century, these accounts came to be supplemented by the invention
of new technologies such as the stethoscope; and how the proliferation of
medical technology in the twentieth century led to both great advances and
serious ethical, political, and economic dilemmas. Then, with a focus on
contemporary molecular biology, genetics, and biotechnology, it considered
some of the promises and challenges of medical technology in the twenty-
first century. Overall, this chapter emphasized that medical technology is
often a double-edged sword, and that we must pay attention to the moral and
spiritual dangers of an unreflective use of it.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. How would you define a “technology”?
2. How is the stethoscope a metaphor for the role of technology in
medical practice?
3. Do you use your iPhone for your health? If so, how? If not, can you
think of some ways in which smartphones could be used to regulate
health?
4. What kinds of tests and technologies do you see in your doctor’s
office? How have they affected your relationship with your doctor or
doctors?

Suggested Writing Exercise

Respond to Freud’s quote at the beginning of the chapter. Do you think
technology has the potential to “solve” the problem of aging and other
ailments, creating a society envisioned by Aldous Huxley or Ray Kurzweil?
Or do you believe, with Freud, that we will never achieve an entirely
seamless union with technology?

Suggested Viewing
Alien Resurrection (1997)
Gattaca (1997)
To Age or Not to Age (2010)
Transcendent Man (2010)

Further Reading
 Aldous Huxley, Brave New World
Florence Nightingale, Notes on Hospitals
H. G. Wells, The Island of Doctor Moreau

Advanced Reading
Rafael Campo, “Technology and Medicine” in The Other Man Was Me:
A Voyage to the New World
Aubrey de Grey, Ending Aging: The Rejuvenation Breakthroughs That
Could Reverse Human Aging in Our Lifetime
Raymond Kurzweil, The Singularity is Near: When Humans Transcend
Biology
Judith Leavitt, Brought to Bed: Childbearing in America 1750 to 1950
Stanley Reiser, Medicine and the Reign of Technology
Sheila M. Rothman and David J. Rothman, The Pursuit of Perfection:
The
Promises and Perils of Medical Enhancement
Eric Topol, The Creative Destruction of Medicine: How the Digital
Revolution Will Create Better Health Care

Online Resources
The Advanced Medical Technology Association
http://www.advamed.org/MemberPortal/
American Medical Technologists
http://www.americanmedtech.org/default.aspx
Health and Life Sciences Partnership
http://www.hlsp.org/
Ray Kurzweil
http://www.kurzweilai.net/
The SENS Foundation (Strategies for Engineered Negligible Senescence
Foundation)
http://www.sens.org/
 5 The Health of Populations
[T]he Fury of the Contagion was such at some particular Times, and
People sicken’d so fast, and died so soon, that it was impossible and
indeed to no purpose to go about to enquire who was sick and who was
well.1
– Daniel Defoe

Weep not for me; think rather of the pestilence and the deaths of so
many others.2
– Marcus Aurelius

Abstract
This chapter explores the history of public health. Beginning with a
discussion of the health of populations in prehistory and antiquity, it
examines how religious institutions of the medieval period took on
the obligation to care for the poor, the needy, and the sick; how public
health officials responded to plague outbreaks in the early modern
period; how infectious disease devastated New World populations;
how a democratic, person-centered view, which established health as
a right of citizenship, arose in the eighteenth and nineteenth centuries;
and how various states have dealt with the health of populations since
then. Then, with a focus on some contemporary issues such as climate
change, it considers some of the challenges facing public health
efforts in the twenty-first century.
Introduction
It is tempting to view the history of public health as a story of triumph and
progress. In this “heroic” narrative, exemplified by George Rosen’s classic
study History of Public Health, the modern nation state and health reform
liberate society from the bondage of disease.3 Scientific knowledge triumphs
over ignorance and superstition, while enlightenment triumphs over
barbarism. On the other hand, scholars in the last quarter of the twentieth
century have offered an “antiheroic” view of public health history. In a
challenging body of work, Michel Foucault (1926–1984) claimed that the
entire state apparatus of medicine and public health has been positively
repressive.4 As medicine and public health were used to police health and
illness, sickness was turned into a form of deviance.
There is much truth in both the “heroic” and “antiheroic” narratives. Due
in part to the conquest of many devastating infectious diseases, people in
modern Western societies live considerably longer and healthier lives than
those who lived before 1750. It is also true that state control can be found
everywhere: in forms of health surveillance, quarantine, vaccinations,
standards of drinking water and clean air, building codes, and many other
measures. However, neither the heroic nor the antiheroic narrative alone does
justice to the complexities, triumphs, and coercions of modern public health
reform. Following Dorothy Porter, this chapter defines the history of public
health as the “history of collective action in relation to the health of
populations,”5 focusing on responses to the epidemic diseases that have
periodically swept through local and regional populations and devastated
millions of people. As we will see, one constant holds true across history and
geography: Poverty is the primary reason why epidemic and endemic
diseases are able to flourish within human populations.

Disease Before Agriculture and the Beginnings of

Urban Life
Surprisingly, epidemic disease does not seem to have afflicted the earliest
human societies. After the invention of clothing and the domestication of fire,
hunters and gatherers emerged from Africa and wandered the earth. These
early humans seem to have escaped epidemic diseases because (1) they lived
in a cold climate that was inhospitable to the parasites and disease organisms
that flourished in a tropical environment; and (2) because they lived in small,
isolated groups that prevented parasites from moving rapidly from person to
person.6
This early freedom from infectious disease would not last. The Neolithic
Revolution, which in some regions began as early as 10,000 BC and as late as
5,000 BC, marked the transition from subsistence hunting and wandering to a
sedentary lifestyle of agriculture and the beginnings of urban life. For
microbial diseases, these more concentrated human populations offered
unprecedented opportunities for infection. The presence of domesticated herd
animals also facilitated the transmission of disease from animals to humans.
As urban civilization spread throughout Eurasia, a host of infections
established themselves in these communities. Waterborne, insect-borne, and
skin-to-skin infections flourished within city environments, setting the stage
for the perpetual struggle between human populations and epidemic disease.7

Public Health in Antiquity

Despite the transition from a nomadic to a sedentary lifestyle, the world of
classical antiquity remained largely rural. Most people lived in small villages
of a few thousand people that, in general, were too scattered to allow for
frequent and widespread outbreaks of epidemic disease. It is not surprising,
then, that Athens and Rome – cities filled with hundreds of thousands of
people – were frequented by infectious diseases. Historians have puzzled
over the origins of the Plague of Athens, which struck three times from 440–
430 BCE. Typhus, smallpox, and measles are the main suspects. The
Antonine Plague (165–180 CE), which may have resulted from an outbreak
of smallpox or measles, ravaged Rome, decimated the Roman army, and
spread across the entire Empire. The Antonine Plague is sometimes known as
the Plague of Galen (131–201), named after the great Roman physician who
ironically fled its ravages and lived to describe it.
Ancient authors and public officials attended to public as well as individual
health. The Hippocratic text On Airs, Waters, Places (400 BCE) stressed the
effects of winds, waters, and seasonal conditions on an individual’s
constitution – factors that today would be known as environmental
determinants of disease.8 As Greek civilization expanded westward toward
Italy, Sicily, and Spain, this Hippocratic text advised colonizers to build their
settlements on elevated areas that benefited from fresh breezes and ample
sunlight. Itinerant physicians also used the text as a reference to deal with
local disease.
The large, well-organized government of the Roman Empire brought major
public health advances. By the second century CE, roads were built
throughout the Empire and fresh water was carried into Rome by aqueducts.
Aesclepian shrines reputedly contained an impressive temple area filled with
baths, theaters, gymnasiums, and sleeping quarters for their guests. The
Romans also established valetudianarias, or infirmaries, for sick slaves, as
well as military hospitals for wounded soldiers.9 These places aimed at
sending slaves and soldiers back to work quickly. There was, however, no
similar motivation to care for those who were poor and sick. By the fifth
century, as the decline of the Roman Empire led to a subsequent
disintegration of public health, the care of the sick shifted to the communal
efforts of the medieval church.

Religion, Care of the Sick, and the Black Death

The rise of Christianity during the reign of Constantine (272–337 CE)
brought with it a new religious obligation to care for the poor, the needy, and
the sick. The resulting institutions – the first hospitals – were organized and
supervised by local bishops in the eastern Mediterranean, which had been
spared the devastation of the barbarian invasions that had destroyed the
Roman Empire. Some hospitals were multifunctional, while others contained
teaching facilities, homes for the aged, leper houses, and women’s hospitals.
By the sixth century, Jerusalem boasted a hospital (nosokomeia) with 200
beds while Constantinople possessed hostels (xenones) that housed the poor
and the sick.10
The first Islamic shelter or hospital was established in the capital city of
Damascus, Syria, around 707. It was founded in conjunction with Syrian
Christians who had already built their own charitable institutions, and was
modeled after the xenones and nosokomeia that were built centuries earlier
throughout the urban centers of the Byzantine Empire. Islamic rulers
gradually established more hospitals, or bimaristans, throughout Cairo (874),
western Baghdad (918), eastern Baghdad (981), Damascus (1156), Cairo
(1284), and Granada (126). In contrast to Christian shelters, which were
smaller and more prevalent, Islamic bimaristans were impressive structures
that stood as symbols of political and economic power. Extravagant rather
than functional, these imperial showcases had little effect on public health.11
In the high Middle Ages (1000–1300) the welfare of the needy was taken
up by Christian philanthropists. In 1145, Guy of Montpelier (1160–1209)
founded the Holy Ghost Hospital, while Pope Innocent built a hospital of the
Holy Ghost in Rome in 1204. Knightly groups, especially the Hospitallers
and the Knights of St. John, set up hospitals from Malta to Germany. The
Hospitallers’ Hospital of St. John in Jerusalem (1023) was located literally at
the center of the Christian world. The hospital was primarily devoted to
needy Christian pilgrims, but Jews and Muslims could also be accepted – a
significant gesture given the contentious era of religious strife and the
Crusades. Medieval hospitals thus stood not only as a shelter for the poor and
the sick, but also as symbols of civic pride, religious faith, and progress.12
One of the great trials for early public health officials was, of course, the
Black Death of the mid-fourteenth century (see Chapter 2). Although the
miasmatic or “bad air” doctrine was still popular among those medieval
medical practitioners who had been reared on Galenism, others rejected this
explanation as insufficient and believed that the disease was somehow
contagious. Descriptions in Boccaccio’s Decameron (1350), for example,
imply that the plague might be spread from person to person: “the sick
communicated it to the healthy who came near them, just as a fire catches
anything dry or oily near it.”13 Various city officials frantically established
methods of quarantine – the process of segregating the sick from the well –
by refusing to allow ships with plague victims to land in their ports. The
bodies of the victims were shunned, thrown over town walls, and hastily
buried in mass graves while their clothes were burnt.14 The public, led by
church authorities, performed rites of penance and supplication. Pope
Clement VI ordered public flagellations as an act of contrition; when these
public spectacles spiraled out of control, Clement gave the order to hang and
burn numerous flagellants.15 Still, the plague raged on.
While the worst ravages of the plague took place between 1340 and 1350,
new public health measures were prompted by later outbreaks. By 1486 in
Venice, three officials were annually elected to a Commission of Public
Health. Two important forms of public health control were established:
citywide quarantine and isolation of the diseased victims. Within the affected
town, the families of plague victims were confined to other houses. Food and
supplies were passed into the houses from the outside, while objects used by
the sick and the deceased were seized and burnt.16

Epidemics in the New World and Colonial America

Europeans gradually gained immunity from certain infectious diseases. With
each epidemic eruption of smallpox, for example, some people survived and
passed on antibodies to the next generation. When Europeans arrived in the
New World, carrying germs that thrived in dense, semi-urban populations,
the indigenous people of the Americas were helpless. Scholars believe that
smallpox arrived in the Americas in 1520 on a Spanish ship sailing from
Hispaniola, carried by an infected African slave.17 As soon as the party
landed in Mexico, the infection began its deadly voyage through the
continent. Even before the arrival of Pizarro, smallpox had already devastated
the Incan Empire, killing the Emperor Huayna Capac and unleashing a bitter
civil war that distracted and weakened his successor, Atahualpa.
The Spaniards’ dominance over the Incas can be attributed not only to the
physical ravages of the disease, but also to psychological factors. The Incas
were surely unhinged by a disease that killed only their own people and left
Spaniards unharmed. For the Incas, such partiality could only be explained
supernaturally: God was on the side of the Spaniards, and each new outbreak
of infectious disease imported from Europe (and soon from Africa as well)
renewed the lesson.18 European diseases, especially smallpox, decimated the
native population of the Americas, which in 1500 may have been between 50
and 100 million. By the middle of the seventeenth century, that number had
fallen below 10 million – and perhaps below 5 million – reducing its
population by up to 90 percent.19
The arrival of new infectious disease was no less devastating to native
populations in the northern hemisphere. In some cases, the transmission of
disease was a deliberate act of war. During a 1763 conflict between the
Pontiac Indians and the British in Pittsburgh, one British commander, Jeffrey
Amherst, proposed that troops send smallpox-infested blankets to the Indians.
The other officer, Bouquet, assented: “I will try to inoculate [today’s word
would be “infect”] the bastards with some blankets that may fall into their
hands, and take care not to get the disease myself.”20 Amherst responded
favorably, writing, “You will do well to inoculate the Indians by means of
blankets, as well as every other method that can serve to extirpate this
execrable race.”21
In early America, there was little awareness of epidemics. Public health,
when organized at all, was a strictly local concern.22 However, the yellow
fever outbreak of 1793 to 1806, which ravaged a number of eastern cities,
forced Americans to confront epidemic disease. The virus was transmitted
during the massive transatlantic slave trade between England, Africa, and the
Americas. While its causes would not be discovered until the twentieth
century, what was known, and known all too well, was the general progress
of the disease: headaches; painful sensitivity to light; fevers up to 105
degrees; terrible aches; internal hemorrhaging and vomiting of black blood;
red blood running from the eyes, nose, and gums; and skin turning gold and
the eyes yellow, culminating in death.
The yellow fever outbreak prompted strict quarantine regulations and the
appointment of public health committees. At first, sanitary reform and state
medicine were based on a belief in the environmental determinants of disease
– the “miasma” of antiquity. Benjamin Rush (1745–1813), for instance,
believed that a rotting cargo of coffee had caused the 1793 outbreak of
yellow fever.23 Others acted on contagionist assumptions. At times, when
city officials were especially alarmed, they hedged their bets by employing
both contagionist and anticontagionist measures at once: enforcing strict
quarantines and, at the same time, cleaning up hazardous sections of the city
that were deemed unsanitary.

Modern Health of Populations

In the eighteenth and nineteenth centuries, the mercantile, state-oriented
approach to health gave way to a democratic, person-centered view that
established health as a right of citizenship. Nation-states in the Western world
collected scientific information, developed educational campaigns, passed
regulations, and built public health bureaucracies. French revolutionaries
added health to the Rights of Man and asserted that health citizenship should
be a characteristic of the modern democratic state. While citizens of the
United States never took such a collective stance, Thomas Jefferson
provocatively declared that sick populations were the product of sick political
systems.24 By this logic, despotism produced disease while democracy
created health. But since government bureaucracies increasingly determined
public measures to prevent disease, some revolutionaries opposed them.
Quarantines, for instance, could be interpreted not as public protection but as
state suppression of individual liberty. For some Enlightenment thinkers,
medical policing and quarantines symbolized all that was wrong with the
traditional, autocratic regime: its tyranny, corruption, and superstition.25
Public health measures also required a new social scientific analysis of
health. Endemic infections of malaria, smallpox, gout, and cholera flourished
in urban settings and were increasingly understood not as divine mysteries
but as knowable diseases to be eradicated. Victorian Britain best illustrates
the evolution of public health as a response to rapid urbanization and
industrialization. In 1801, 800,000 people lived in London; by 1841 – less
than half a century later – the city’s population had more than doubled to 1.8
million,26 among them a growing class of factory workers who lived in
poverty and squalor. These conditions spawned devastating epidemics of
typhus and cholera.
Public health controversy in nineteenth-century England centered on
whether diseases – especially cholera – were caused by contagion or miasma.
Were they transmitted from one individual to another? Or were they caused
by poisonous particles in foul-smelling air in dirty and unsafe environments
where poor people lived? Neither position explained epidemic outbreaks
entirely: If a miasma was responsible, why did cholera strike some people in
one area of town and not others? If cholera was contagious, why did it
suddenly appear in a previously unaffected section of town? And why did it
not affect those who treated the sufferers? In 1853, writing of cholera’s
uncertain origin, Thomas Wakley, editor of The Lancet, admitted that “all is
darkness and confusion, vague theory, and a vain speculation. Is it a fungus,
an insect, a miasm, an electrical disturbance, a deficiency of ozone, a morbid
off-scouring from the intestinal canal? We know nothing; we are at sea in a
whirlpool of conjecture.”27
British physician John Snow (1813–1858) helped resolve this mystery by
demonstrating that cholera was spread by sewage in water supplies.
Questioning miasmatism, he argued that cholera could not be spread by a
poison in the air since it affected the intestines, not the lungs. In 1854, after
noticing a lethal cluster of cholera cases in a single neighborhood in London,
Snow learned that many cholera victims drew their water from a single pump
on Broad Street. The pump, it turned out, drew its water from a polluted
section of the Thames River. Once local authorities removed the pump,
cholera disappeared from the area. Snow’s demonstration radically
challenged the miasmatic theory of disease and ushered in a new era of
sanitation and public health that focused on the cleanliness of the water
supply, living conditions, and the urban environment.
Still, many scientists – especially the miasmatists – were reluctant to accept
his claim that cholera derived from a specific, if unknown, waterborne
disease. In 1854, the same year that Snow investigated the water supply in
London, Italian physician Filippo Pacini (1812–1883) isolated the bacterial
cause of cholera (Vibrio cholerae). His finding was not widely known until
the 1880s when Robert Koch (1843–1910), unaware of Picini’s work,
rediscovered the vibrio bacillus along with the bacteria responsible for
tuberculosis and anthrax.
As debates raged over the cholera outbreak, the study of epidemics relied
increasingly upon statistics and objective data. Facts, not opinions, were the
answer for the great sanitarians, for whom cholera served as a measuring
stick in the ongoing struggle to eradicate disease. In his famous Report on the
Sanitary Condition of the Labouring Population (1842), which outsold many
novels of the time, British utilitarian reformer Edwin Chadwick (1800–1890)
argued for a major correlation between disease and an unclean environment.
“The annual loss of life from filth and bad ventilation,” he declared, “is
greater than the loss from death or wounds in any wars in which the country
has been engaged in modern times.”28 Chadwick’s Report was a passionate
piece of propaganda aimed at goading the government into reform. In 1848,
the British Parliament passed a Public Health Act that empowered local
boards of health to build sewers, pave and clean streets, enforce drainage of
cesspools, inspect housing and burial grounds, and control the water
supply.29 By the second half of the century, cities in Britain and elsewhere
had implemented Chadwick’s system, which greatly improved sanitation and
health.
Health and the Modern State
The population explosion in the nineteenth century, coupled with
industrialization and the rise of science, radically changed public health in the
twentieth century. Western nations turned to epidemiology and the study of
population health to help gauge the strength of the state. Many pressing
questions emerged. What constitutes a “healthy” society? How should the
government care for its most poor and downtrodden citizens? What type of
welfare state should be implemented? At the end of the nineteenth and the
beginning of the twentieth centuries, nation-states turned to Charles Darwin’s
(1809–1882) evolutionary theory to strengthen the health of their
populations. One result was the morally troublesome social philosophy and
science of “eugenics,” which advocated the control of reproduction in order
to produce more people with “desirable” traits.
While its sources were diverse, the eugenics movement coalesced around
the ideas of Darwin’s cousin, Sir Francis Galton (1822–1911). Galton
believed that the mental, moral, and temperamental characteristics of human
beings were wholly determined by heredity. He coined the term “eugenics” to
refer to “the study of agencies under social control which may improve or
impair the racial qualities of future generations.”30 Eugenics emerged, in part,
from the desire to reconcile the contradiction between narratives of progress
– a belief in the eventual “perfectibility” of society – and the stark realities of
urban poverty and disease. In short, it offered a way to “purify” racially
undesirable citizens in order to create a healthier society. Consider, for
instance, the rhetoric of the leading British socialist Sidney Webb (1859–
1947):

In Great Britain at this moment, when half, or perhaps two-thirds, of all

the married people are regulating their families, children are being freely
born to the Irish Roman Catholics and the Polish, Russian and German
Jews .... This can hardly result in anything but national deterioration; or,
as an alternative, in this country gradually falling to the Irish and the
Jews. Finally there are signs that even these races are becoming
influenced. The ultimate future of these islands may be to the Chinese!31

Webb articulated the widespread fear that the population explosion at the turn
of the century, if gone unchecked, would lead to a nation composed not of
Anglo-Saxons but of ravenous, diseased, degenerate hoards from other racial,
ethnic, and national groups. Eugenics, in other words, was a means by which
dominant groups improved their health and maintained their social position.
From the early to the mid-twentieth century, various eugenics practices
were widely accepted and practiced in the United States. Many states enacted
legislation prohibiting marriage between individuals who had epilepsy or
who were deemed “imbeciles” or “feeble-minded.” Anti-miscegenation laws
were on the books in all southern and some western states until the Supreme
Court declared them unconstitutional in 1967. Margaret Sanger (1879–1966)
advocated birth control measures or sterilization for poor women. Whereas
Sanger left these decisions to individual women, some states enacted
compulsory or forced sterilization for criminals, various institutionalized
populations, and others thought to be “unfit” or “undesirable.”32 Since
women actually produced children, they were disproportionately sterilized
(especially poor and black women) in eugenic efforts to regulate birth rates,
to “protect” white racial health and weed out the “defectives” of society.
Other methods used in the eugenicist vision of health included restrictions on
immigration from southern and eastern Europe and even euthanasia.33
American eugenic policies were adopted with a vengeance when the Nazis,
whose entire social and political agenda hinged on obsessions of racial
supremacy, came to power in Germany in 1933. The Nazi agenda called for
the active extermination of the unwanted racial members of society: Jews,
gypsies, or indeed, anyone non-Aryan. But it was also applied to categories
within the Aryan population: the privileging of men over women, the young
over the old, the strong over the weak, straight over gay, the “sane” over the
“insane.” Nazi psychiatrists, for instance, lumped the mentally ill into the
same category as “racial undesirables.” Between 1940 and 1942, 70,000
mentally ill patients were gassed, chosen from lists of those whose “lives
were not worth living” according to nine leading professors of psychiatry and
thirty-nine physicians.34
Anxieties over the purity and putative health of populations in other
European countries led white, male political leaders to take a new interest in
maternal and child welfare. As policymakers began to see family support as a
key function of welfare, maternalism and child welfare became the central
platform of social policies. Once again, this concern was especially
pronounced in Nazi Germany, where the attempt to breed an Aryan race was
supported through financial and tax incentives for early marriage and the
production of large families among “Aryan types.”35
At the beginning of the twentieth century, modern states played little part
in the delivery and organization of medical care. But with the rise of the
“classic welfare state,” as historians of public health call it, governments
were expected to ensure the health of their citizens.36 The execution of this
lofty ideal has varied considerably from nation to nation. Throughout Europe,
for instance, most nations established social insurance systems after World
War I, which eased the extreme poverty of its most destitute citizens. The
second phase of this process, enacted after World War II, created new forms
of social security that went beyond basic subsistence wages to include
income security, health insurance, and provision for the elderly.
Public health legislation in the United States has taken a very different
form. Reformers in the Progressive Era (ca. 1900–1920) tried with some
success to establish state legislation enacting workers’ compensation,
retirement benefits, and health care insurance. In 1935, a national system of
social insurance was established by the Social Security Act, which set up
programs providing old-age assistance, old-age retirement benefits,
unemployment compensation, aid to dependent children, maternal and child
welfare, and aid to the blind. Health insurance was not among its provisions.
In the second half of the twentieth century, the United States was the only
major Western country without a national system that provided health care
for all its citizens. In the early 1970s, after Medicare and Medicaid provided
health insurance for the aged and the poor, roughly 10–12 percent of citizens
remained without insurance coverage. As of 2009, this figure had risen to
16.7 percent, or to 50.7 million.37 The Affordable Care Act (2010) aimed at
providing health care insurance coverage for almost all those without it, but
the role of government in the provision of health and welfare remains a
matter of strenuous debate in the United States.
In addition to the problem of uncertain political support for health policies,
public health advocates and officials also faced new disease challenges in the
second half of the twentieth century and into the new millennium. By the
1970s, many infectious diseases in developed countries had been defeated
through advances in public health, nutrition, living conditions, vaccines,
antibiotics, and other medical interventions. This trend, known as the
“epidemiological transition,” marked a shift in causes of deaths from
infectious to chronic disease.38 As attention shifted to chronic disease, public
health officials faced a new challenge: there was no consensus or strategy
about preventing or curing cancer, heart disease, stroke, chronic obstructive
pulmonary disease, or diabetes. There was also little agreement about how
other important etiological factors – nutrition, occupation, and the
environment – influenced one’s susceptibility to disease. Many public health
leaders suggested that the new problems represented by chronic disease
called for the long-overdue union of preventive and curative medicine.39 If
chronic disease could not be cured, they argued, then it could be controlled
through screening, education, and medical supervision.
In 1954, American physicians created a new specialty – preventive
medicine – to address this gap in the care and control of chronic,
occupational, and environmental diseases. Preventive medicine, which
focused on the health of individuals, communities, and defined populations,
occupied a middle ground between public health and hospital-oriented
clinical specialties.40 In addition to clinical training in disease prevention,
preventive medicine specialists were also trained in traditional subject areas
of public health: biostatistics, epidemiology, environmental and occupational
medicine, planning and evaluation of health services, management of health
care organizations, research into causes of disease, and injury in population
groups.41 In the latter twentieth century, academic medicine, public health,
and government in Western countries joined hands to promote healthy
lifestyles. Through advertising, marketing, and public relations, the idea of
“healthy living” was cultivated to reduce or prevent disability and chronic
diseases associated with an aging population – in particular cardiovascular
disease, stroke, chronic obstructive pulmonary disease, cancer, accidents,
Alzheimer’s disease, and diabetes. Nonetheless, despite recommendations
about diet, exercise, and smoking that Galen would have made 2,000 years
ago, rates of diabetes and obesity in the United States and around the world
continued to rise.

The Contemporary Challenges of Global Health

The epidemiologic transition has occurred largely among developed nations
where it is uncommon to die from infectious disease and common to live past
seventy. In Third World nations, in contrast, infectious diseases remain the
chief causes of death. Cholera and tuberculosis, for instance, kill large
numbers in South Asia, China, and Africa. As we have seen, infectious
disease remains largely a function of poverty and living conditions. As of
2002, 1.2 billion people, a fifth of the world’s populations, were living in
“extreme poverty” and nearly 2.4 billion people lacked access to sanitation.42
For example, following a devastating earthquake in Haiti in 2010, an
outbreak of cholera revealed a developing nation that possessed neither a
public health infrastructure nor the medical facilities and personnel to battle a
disease that, in developed nations, had long been vanquished.
Despite the epidemiologic transition in Western and developed countries,
infectious diseases have by no means been eradicated. Contrary to the high
hopes spawned by the invention of antibiotics, a host of new and resurgent
infectious diseases threaten all areas of the globe.43 On the one hand, many
“older” pathogens that were thought extinct – notably tuberculosis and
malaria – have successfully mutated and become immune to the drugs that
previously killed them off. On the other hand, more than thirty highly lethal
viral and bacterial diseases have emerged since 1950, in developed and as
well as undeveloped nations.44
Figure 5. Emerging Infectious Diseases, 2000, Eric Avery, MD, 1948– © Eric Avery,
MD 2000.

When text accompanies an image, you have reason to expect it to be instructive or a

message of some sort. The title of Eric Avery’s print tells us that the terms surrounding
the frame, “Cholera,” “drug resistant bacteria,” and “West Nile fever,” among others, are
 among the emerging infectious diseases confronting humankind.
One also has reason to expect the image to depict some aspect of those diseases.
Avery depicts caregiving to both patients suffering from infectious diseases and to one
who has died in a clinic-like setting. How would you describe the quality of care?
This is representational art – that is, it depicts recognizable objects. At the same time,
though, the style is almost crude: the poses and gestures of the figures are stiff and even
cartoonish. In keeping with the style, Avery rendered the three-dimensional space of the
clinic in a rough approximation of classical perspective. Notice how he drew the beds
progressively smaller, as if the patients extended beyond the edge of the picture, toward
the vanishing point of infinity.
What other messages can we glean from the image? What might the black birds
symbolize? Can you imagine an abstract image of infectious diseases? Something like
the symbol for radiation hazards? Are any of the caregivers in lab coats women? What
roles do women have? Why would Avery draw the corpse in the foreground? Is the gaze
of the women preparing the corpse directed at the viewer, at us?
For forty years Eric Avery has not only made prints that explore issues such as human
rights abuses, and social responses to disease, death, sexuality, and the body; he has also
worked as a physician and psychiatrist. To learn more about Eric Avery’s work, visit
http://www.docart.com/index.html.

One of these “new” diseases, HIV/AIDS, first appeared in Los Angeles

within the gay community, where victims appeared to have a particularly
virulent form of cancer that was exacerbated further by pneumonia. By 1982,
the media, still lacking a name for the disease, called it “the gay plague.” As
Susan Sontag (1933–2004) pointed out, the label of “plague,” with its
connotations of sinfulness, came readily to those who stigmatized gays.45 Just
as lepers had been considered sinners and those with cholera had been
considered punished, so too gay men were considered to be punished for their
actions. The underlying disease turned out to be not cancer but an unknown
virus (HIV or human immunodeficiency virus) which often develops into
AIDS (acquired immunity deficiency syndrome). This especially devastating,
sexually transmitted infectious disease has afflicted both straights and gays
and killed millions of people throughout the world, reaching epidemic
proportions in Africa. Since the 1990s, new antiviral medications have
transformed AIDS from an inevitably fatal disease into a more chronic,
manageable disease for those with the ability to pay for medication in
developed countries.
As public health scholars, clinicians, and officials have repeatedly made
clear, the human contest against disease will depend – as it has always
depended – on our ability to understand the complex interrelationship
between disease, the environment, and human behavior. While global climate
change has become the most pressing environmental concern of the twenty-
first century, this concern is rarely expressed in terms of the real and potential
costs in human lives and suffering. The World Health Organization estimated
recently that, in 2000 alone, floods due to climate change were responsible
for 166,000 deaths and 5.5 million years lived with disability.46 The numbers
are staggering and the prognosis is grim. Effective change will require
political will and an improved understanding of the often indirect, long-term,
and complex consequences of climate change for human health.
As public health looks ahead into the twenty-first century, researchers and
policymakers debate whether questions of justice and health policy should
extend beyond national boundaries. Do developed countries, grappling with
chronic disease, have an obligation to assist developing nations that suffer
under the pall of infectious disease and the health effects of climate change?
The answers will depend largely on whether public health becomes widely
understood as global health and whether global health is seen as an obligation
to a global community.

Summation
This chapter explored the history of public health. Beginning with a
discussion of the health of populations in prehistory and antiquity, it explored
how religious institutions of the medieval period took on the obligation to
care for the poor, the needy, and the sick; how public health officials
responded to plague outbreaks in the early modern period; how infectious
disease devastated New World populations; how a democratic, person-
centered view, which established health as a right of citizenship, arose in the
eighteenth and nineteenth centuries; and how various states have dealt with
the health of populations since then. Then, with a focus on some
contemporary issues, such as climate change, it considered some of the
challenges facing public health efforts in the twenty-first century. Overall,
this chapter emphasized the importance of understanding the complex
interrelationship between disease, the environment, and human behavior.
Exercises for Critical Thinking and Character
Formation
Questions for Discussion
1. Does public health policy affect your life? How?
2. If you were writing a history of public health, would your narrative be
heroic or antiheroic?
3. How did Hippocrates’ On Airs, Waters, Places contribute to early
understandings of public health?
4. In your opinion, do developed nations like the United States have a
responsibility to provide for the well-being of developing world
nations?

Suggested Writing Exercise

Imagine that you are one of the public officials in a medieval city when the
Black Plague arrives. The debate centers on the problem of quarantine versus
the persistence of an unclean environment, or “miasma,” in certain areas of
the city. Write for five–ten minutes on which public health policy you would
implement. State the benefits and disadvantages of each policy, and explain
your decision about which policy to adopt.

Suggested Viewing
28 Days Later (2002)
Apocalypto (2006)
Blue Gold: World Water Wars (2008)
Contagion (2010)
The Dallas Buyers Club (2013)
God’s Children (2002)
Super Size Me (2004)

Further Reading
 Albert Camus, The Plague
Daniel Defoe, Journal of the Plague Year
Tracy Kidder, Mountains Beyond Mountains: The Quest of Dr. Paul
Farmer, a Man Who Would Cure the World
Thomas Mann, The Magic Mountain
José Saramago, Blindness

Advanced Reading
Michel Foucault, Madness and Civilization: A History of Insanity in the
Age of Reason
Howard Markel, When Germs Travel: Six Major Epidemics That Have
Invaded America since 1990 and the Fears They Have Unleashed
William McNeill, Plagues and Peoples
Dorothy Porter, Health, Civilization and the State: A History of Public
Health from Ancient to Modern Times
Guenter Risse, Mending Bodies, Saving Souls: A History of Hospitals
George Rosen, A History of Public Health

Journals
American Journal of Public Health
European Journal of Public Health
International Journal of Environmental Research and Public Health

Online Resources
The Clinton Foundation
http://www.clintonfoundation.org/
The Hastings Center for Bioethics and Public Policy
http://www.thehastingscenter.org/
The Medicine and Public Health Initiative
http://medph.org/
National Environmental Health Association
http://www.neha.org/index.shtml
Pan American Health Organization
http://new.paho.org/index.php
Partners in Health
http://www.pih.org/
Public Health and Social Justice
http://www.publichealthandsocialjustice.org/
Public Health Foundation
http://www.phf.org/Pages/default.aspx
The World Federation of Public Health Associations
http://www.wfpha.org
World Health Organization
http://www.who.int/en/
 6 Death and Dying
The physician should be the minister of hope and comfort to the sick,
that by such cordials to the drooping spirit, he may soothe the bed of
death, revive expiring life, and counteract the depressing influence of
those maladies which often disturb the tranquility of the most resigned
in their last moments.1
– The 1847 American Medical Association Code of Ethics

Abstract
This chapter explores the social and cultural history of death and
dying in the west. Beginning with a discussion of how life and death
were understood in antiquity, it examines the medieval ideal of the
“tame death”; the plague’s contribution to early modern images of
death as the “king of terrors”; the eighteenth-century Enlightenment’s
growing interest in the precise, scientific nature of death; the
nineteenth-century Victorian romanticization of and denial of death;
and the increasing “medicalization” of death in the twentieth century.
Then, with a focus on contemporary end-of-life issues in America, it
considers some of the questions facing us when we think about how
we die and what it means to die in the twenty-first century.

Introduction
Death, as Frank Kermode (1919–2010) once observed, is a “fact of life and a
fact of the imagination, working out from the middle, the human crisis.”2
Experiences of dying and perceptions of death, that is, are matters of cultural
and personal meaning that are shaped by their historical, social, and cultural
contexts: religious frameworks, social institutions, rituals, the state of medical
knowledge, and technology. This chapter examines the cultural and social
history of death and dying in the west, focusing on the increasing role of
medicine in the United States in the modern period. Three basic themes
thread their way through this history: (1) the search for definitions of death
and for signs that determine biological death; (2) cultural constructions of
“good” and “bad” deaths; and (3) the medicalization of death – that is, the
role of medicine and physicians in trying to ease the dying process or to
defeat death.
No account of the history of death can afford to ignore Philippe Ariès’
(1914–1984) groundbreaking contributions to the field.3 Ariès’ primary
contention is that, from the early Middle Ages to the twentieth century,
Western civilization went from being familiar with death to denying its
existence and banishing it from sight. This chapter makes use of Ariès’
interpretive framework, but addresses its two major limitations: (1) a
tendency to overlook the medicalization of death, which has accelerated since
the eighteenth century; and (2) more recent movements – which have largely
emerged since the publication of his work in the 1970s – of palliative care
and the right to die that have brought death back into the open and challenged
aspects of high-tech rescue medicine in hospital care of the dying.4

Ancient Understandings of Death

What is death? Where is it located? How can it be understood? Throughout
medical history, doctors, philosophers, and bioethicists have debated these
fundamental questions. While contemporary definitions of death have grown
increasingly complex, the answer prior to the eighteenth century was
surprisingly consistent: the cessation of the heart indicated the clinical sign of
death.5 As Aristotle (384–322 BCE) wrote, the orifices of the heart “are the
springs of man’s existence; from them spread throughout his body those
rivers with which his mortal habitation is irrigated, those rivers which bring
life to man as well, for if they ever dry up then man dies.”6 Life was thus
understood as “possession,” or the condition of having vitality. Death, on the
other hand, was understood as privation – that is, as a non-entity that
designated the absence of vitality, having no positive content of its own.7
 Just as doctors and philosophers debated the nature of life and death, so too
did they scour the body for indications, or signa, of actual death. These signs
included stopping of the pulse or breathing, pallor, coldness, lack of
sensation, cadaverous spots, eye signs, relaxation, rigor mortis, and (the most
reliable of all) putrefaction, or the foul-smelling decay of the body.8 Even as
they searched for indications of death, Hippocratic physicians did not see
themselves as miracle workers who saved the dying from the clutches of
death. Nor were the Hippocratics concerned with either immediate or distant
causes of death, which was understood as an existential mystery rather than a
medical problem. Many philosophers, especially the Stoics, kept an agnostic
attitude toward death. “What is to come,” advises Seneca, “is uncertain.”
Stressing the boundary between gods and humans, he goes on to say:

Life is the gift of the immortal god.... [Death] has an evil reputation. Yet
none of the people who malign it has put it to the test. Until one does it’s
rather rash to condemn a thing one knows nothing about. And yet one
thing you do know and that is this, how many people it’s a blessing to,
how many people it frees from torture, want, maladies, suffering,
weariness. And no one has power over us when death is within our own
power.9

As we have seen in Chapter 2, medical thought in the ancient western world

was shaped by a fundamentally religious worldview, which was particularly
expressed in care of the dying. As the sick, impoverished, aging, or mortally
wounded entered the Aesclepian temple or the early hospital (the
xenodocheion) they expected to take comfort in these places and to make
peace with their community and their gods.

Medieval and Early Modern Dying: From “Tame

Death” to the “King of Terrors”
How could medieval practitioners and healers tell if a sick person was going
to die? One method, apparently recommended in France around the year 800,
was to “take the tick of a black dog in the left hand and go into the sick room,
and if, when the sick man sees you, he turns himself towards you, non euadit
[he’s ‘a goner’].” Alternatively, one might wipe the sick person with a lump
of lard and throw it to a dog. If the dog eats the lard, the patient will live.10
These anecdotes, along with many others, present the world of medieval
healing as superstitious, anti-medical, and comically inept. This picture,
however, is not entirely accurate. Literate medieval medical practitioners
borrowed from and reproduced the early instructions of Hippocrates (c. 460–
377 BCE), Pliny (61–112), and Dioscorides (40–90). These medieval texts
described the signa mortifera – literally the death-bearing signs – of small
eyes, sunken cheeks, dryness of the face, sharpening of the nose, distortion of
the earlobes, insomnia, diarrhea, and vomiting. At the same time, these
traditional medical ways of discerning death intersected with religious or
magical beliefs and practices. Lunaria, for example, involved predicting the
outcome of disease according to the day of the lunar cycle on which the
patient fell sick. Another practice, known as “onomancy,” converted the
sufferer’s name into a numerical value in order to determine the day on which
he or she would die.11 The available forms of prognosis – clinical
observation, astrology, and divination – thus spanned medicine, religion, and
magic, categories not considered mutually exclusive.
In the early Middle Ages, according to Aries, “tame death” emerged as an
ideal of the good death. In this ideal, one went to death as one goes to sleep:
peacefully, silently, without a fight.12 Aries argued that this attitude of
familiarity and acquiescence persisted through much of the medieval period.
Rich literary and liturgical traditions – especially the Arthurian legends –
offer poignant images of knights, warriors, clergy, and peasants who settled
their worldly affairs and submitted to death and the afterlife. After he is
mortally wounded in combat by Sir Lancelot, Gawain tells his uncle, King
Arthur, to preserve his memory: “Dear uncle, I am dying. Send word to
Lancelot that I salute him and that I beg him to come and visit my grave after
I am dead.”13 A feeling of renunciation pervades the scene: the dying person,
Gawain, accepts both defeat and death before commending his soul to God.
The unified vision implied here – between fathers and sons, friends and foes,
the individual and the community, the earthly life and the afterlife – suggests
a oneness between the living and the dead. In the medieval ideal, physicians
are nowhere to be found.
“I am the Resurrection and the life,” Jesus said. “He that believeth in me,
though he were dead, yet shall live.”14 In spite of the ideal of a “tame death”
and the Christian promise of a new body and a new life beyond death, fear
haunted late medieval Europe. It appears to have reached a peak during the
terrible diseases of the fourteenth and fifteenth centuries. As we saw in
Chapter 3, the Black Plague epidemic of 1348–1350 took the lives of up to
one-third of the population; it also wreaked havoc with traditional rituals and
images of dying and burial. As death tolls rose and the dead were stacked up
before the doorways of houses, traditional funeral processions and
ceremonies had to be forbidden in many cities. Burial, when it was even
possible, was hasty and unceremonious; in many cases, family members
simply fled the scene.
The collective psychic trauma of the Black Plague contributed to a
terrifying vision of death as the “king of terrors.” During the late Middle
Ages, the imagery of the Danse Macabre (dance of death) and Ars Moriendi
(the art of dying) accentuated the physical horrors of death and deterioration.
Tombs were covered with sculptures of the dead in advanced stages of
decomposition. Life-size images of the dead were commonplace in churches
and public places.15 In spite of the image of death as the “king of terrors,”
medieval Christianity preached contempt for worldly suffering and jubilation
over salvation of the soul. At the same time that the literature of the Ars
Moriendi depicted the physical agonies of death, it offered consolation and
practical guidance for the dying, whose prescribed prayers, actions, and
attitudes would be rewarded in the next world.
Although the medieval period is known as the era of plague and leprosy,
epidemic outbreaks persisted into the Renaissance and Reformation,
culminating in the plagues of 1576–1577 in Italy that cast a long, dark
shadow over western Europe. Dread and anxiety about death also made their
way to the New World among colonists who settled in New England in the
seventeenth century, when as many as one-quarter of all children did not live
to see their tenth birthday. The New England colonists’ Calvinist theology
did not assuage this anxiety and may actually have heightened it. For them,
faith in God’s goodness and in his covenant offered hope, but no assurance of
salvation or resurrection. They walked a tightrope between perfection and
punishment, seeing death as both purification – the bestowal of a new body –
and as the gateway to hell, the ultimate punishment of the unregenerate.16 As
late as the eighteenth century, theologian and pastor Jonathan Edwards
(1703–1758) preached this message:
 Death temporal is a shadow of eternal death. The agonies, the pains, the
groans and gasps of death, the pale, horrid, ghastly appearance of the
corpse, its being laid in a dark and silent grave, there putrifying and
rotting and become exceeding loathsome and being eaten with worms
(Isaiah 66:24) is an image of hell, and the body’s continuing in the grave
and never rising in this world is to shadow forth the eternity of the
misery of hell.17

The Enlightenment, Romanticism, and Modern

Medical Care of the Dying
Despite Edwards’ lingering Baroque imagery, the eighteenth century marked
a period of increasing longevity, a reduction of devastating epidemic disease,
and the advent of less frightening imagery and beliefs about death. Many
Protestant theologians, ministers, and churchgoers came to the view that
salvation and resurrection were guaranteed to those who believed in the
divinity of Jesus Christ, reducing the anxiety embedded in the Calvinist
views of uncertainty about one’s eternal fate. Cherubs, angels, and other
heavenly images replaced death’s heads and depictions of hell in religious art
and on cemetery headstones.
As European and colonial American demography and culture came to
enjoy some relief from death as the king of terrors, medicine gradually came
to play a more important role in care for the dying. For the most part, dying
remained the province of the clergy until well into the nineteenth century.
Physicians were instructed to “abstain from visiting the dying,” in the words
of Friederich Hoffman (1660–1742), author of the manual Medicus Politicus
(The Politic Physician), published in 1738.18 Nevertheless, the intellectual
roots of a new medical approach to care of the dying had already been
articulated over a century earlier, when Francis Bacon (1561–1626), also
credited as “father” of the scientific revolution, redefined the duties of the
physician. Bacon called on physicians to “acquire the skill and to bestow the
attention whereby the dying may pass more easily and quietly out of life.
This part I call ... outward Euthanasia, or the easy dying of the body to
distinguish it from that Euthanasia which regards the preparation of the
soul.”19
 Bacon’s charge had profound implications for the relationship between
religious and medical care of the dying. In the late eighteenth century,
Scottish physician John Gregory (1724–1773) condemned physicians who
abandoned the dying: “Let me here exhort you against the custom of some
physicians who leave their patients when their life is despaired of, and when
it is no longer decent to put them to further expense. It is as much the
business of a physician to alleviate pain and to smooth the avenues of death,
when unavoidable, as to cure diseases.”20 Over the next 250 years, however,
medical advances led to a strong and enduring tension between this ideal of
easing the physical agonies of dying and a new biomedical and technological
ideal of saving lives. In the process, the term “euthanasia” was transformed
from its original meaning of a “good death” to that of actively taking of a life
– a crime against humanity in the context of Nazism – and a moral-legal
battleground for end-of-life care in the era of high-tech medicine.
During the Enlightenment, scientists and physicians took an ever-
increasing interest in the precise nature of death. Fear of premature burial and
concern about apparent death (e.g., from drowning or seizures) versus actual
death prompted the question: How could one accurately determine when a
patient had died? The modern scientific debate (which continues today) over
the signs of death began in 1740 with the publication of Parisian anatomist
Jacques Winslow’s (1669–1760) The Uncertainty of the Signs of Death and
the Dangers of Precipitate Interments and Dissections. Winslow claimed that
he himself had twice been abandoned as dead, only to revive and discover
that he had been placed in a coffin. He concluded that the traditional heart-
lung criteria, pinpricks, and even incisions were inconclusive, leading to the
view that putrefaction (the foul-smelling decomposition of the body) was the
only sure sign of death. Many contemporary medical, legal, and social
procedures – death certificates completed by a physician, the delay of burial,
and resuscitation techniques – are indebted to the Enlightenment fear of
premature burial and obsession with determining the accurate signa of
death.21
In the nineteenth century, medical care of the dying was integrated into
professional ethics. British physician Thomas Percival (1740–1804), echoing
the words of Francis Bacon (1561–1626), insisted that it was the physician’s
responsibility to “obviate despair, alleviate pain, and sooth mental
anguish.”22 By 1847, when the American Medical Association wrote its Code
of Ethics, the care of the dying was considered an essential obligation: “The
physician should be the minister of hope and comfort to the sick, that by such
cordials to the drooping spirit, he may soothe the bed of death, revive
expiring life, and counteract the depressing influence of those maladies which
often disturb the tranquility of the most resigned in their last moments.”23
These words, some of which were taken directly from Percival’s classic text
Medical Ethics (1803), hinted that the doctor might displace the clergyman
rather than work together with him.
Despite these pronouncements of the medical profession, care of the dying
throughout the nineteenth century was carried out primarily by families who
were as concerned about the eternal fate of the soul as they were about the
physical condition of the body. Many could not afford the services of
physicians, who were few and far between, often late or unreachable, and
who in any case could actually do very little. Although morphine was isolated
in 1816, not until the development of the hypodermic syringe in the 1850s
did physicians have the means to deliver a powerful analgesic that in some
cases reduced pain and eased labored breathing as a patient expired.24
Through the middle of the nineteenth century, the most influential vision of
a “good death” was penned by Anglican bishop Jeremy Taylor (1613–1667),
whose The Rule and Exercise of Holy Dying (1651) instructed his Protestant
readers to remain lucid, resign themselves to God’s will, and demonstrate
stoicism in the face of physical pain and emotional suffering.25 Even as
families prayed and looked for signs of spiritual readiness, care of the body
was a strenuous task. “Men and especially women,” writes Emily Abel
(1942–), “administered medications ... applied poultices, watched for
dangerous symptoms, changed dressings and cleaned up vomit, excrement,
pus and blood; after death occurred, friends and family sat by bodies, washed
them and laid them out.”26
Gradually, middle-class culture rejected Calvinist theology and its
frightening imagery of death; in its place, Anglo-Americans held a
romanticized attitude toward death. As one English author put it in 1899,
“Death is regarded no longer as a king of terror, but rather as a kindly nurse
who puts us to bed when our day’s work is done. The fear of death is being
replaced by the joy of life. The flames of hell are sinking low, and even
heaven has but poor attraction for the modern man. Full life here and now is
the demand; what may come hereafter is left to take care of itself.”27 Death
also provided an opportunity both for conspicuous consumption and for
sentimental excess, especially in funeral planning. The bleak, sparse spaces
of Puritan graveyards gave way to ornate “garden cemeteries” filled with
manicured shrubbery and sentimental statues.28
The Victorian romanticization of death was a double-edged sword. While it
may have softened one’s encounter with death or loss, it also offered a partial
– and hence an inauthentic – account of the realities of dying. This
evasiveness is captured in Leo Tolstoy’s (1828–1910) masterful story The
Death of Ivan Ilych. Ivan Ilych is a Russian government official who, by any
external standard, leads a successful life. He is married with a family, enjoys
professional success, and is well-liked by his peers. Over the course of a few
months, however, Ivan falls ill and grows keenly aware that he is not only
sick – he is dying. As he reflects on the ultimate meaning of his life, Ivan
despises the refusal, among his family, friends, and doctors, to talk openly
about the fact of his impending death:

What tormented Ivan Ilych most was the deception, the lie, which for
some reason they all accepted, that he was not dying but was simply ill,
and he only need keep quiet and undergo a treatment and then
something very good would result.... The awful, terrible act of his dying
was, he could see, reduced by those about him to the level of a casual,
unpleasant, and almost indecorous incident (as if someone entered a
drawing room defusing an unpleasant odour), and this was done by that
very decorum which he had served all his life long.29

What torments Ivan, in other words, is the unwillingness of his doctor, his
wife, and his friends to call death by name – and, even more radically, to turn
death into a sort of fiction by calling it a temporary “sickness.” Ivan is also
haunted by the realization that he has lived a shallow life, one measured by
the outward appearance of success and empty of deep, loving relationships.
The Death of Ivan Ilych raises a number of questions that remain relevant in
contemporary society. What is the role of the physician in end-of-life care?
What are the goals of care? What is the place of truth telling? How should
one talk to or care for a dying friend? How should one organize one’s own
life during its final hours?
 Case Study: The Death of Ivan Ilych
In this concluding scene from Tolstoy’s The Death of Ivan Ilych, Ivan lies on his
deathbed after three days of intense agony and despair. He suddenly realizes, with a
flash of insight, that his life is not what it should have been. But if my life has not been
lived correctly, Ivan asks himself, then what is the right way to live?
This occurred at the end of the third day, two hours before his death. Just then his
schoolboy son had crept softly in and gone up to the bedside. The dying man was still
screaming desperately and waving his arms. His hand fell on the boy’s head, and the boy
caught it, pressed it to his lips, and began to cry.
At that very moment Ivan Ilych fell through and caught sight of the light, and it was
revealed to him that though his life had not been what it should have been, this could
still be rectified. He asked himself, “what is the right thing?” and grew still, listening.
Then he felt that someone was kissing his hand. He opened his eyes, looked at his son,
and felt sorry for him. His wife came up to him and he glanced at her. She was gazing at
him open-mouthed, with undried tears on her nose and cheek and a despairing look on
her face. He felt sorry for her too.
“Yes, I am making them wretched,” he thought. “They are sorry, but it will be better
for them when I die.” He wished to say this but had not the strength to utter it. “Besides,
why speak? I must act,” he thought. With a look at his wife he indicated his son and
said: “Take him away ... sorry for him ... sorry for you too.” He tried to add, “forgive
me,” but said “forgo” and waved his hand, knowing that He whose understanding
mattered would understand.30

1. Ivan realizes that “his life was not what it should have been.” What,
specifically, do you think that Ivan wishes he could have done differently?
What do Ivan’s interactions with his wife and son suggest about his regrets?
2. Ivan also believes that, even in his final moments, his life can be “rectified.”
What does the final scene tell us about Ivan’s (and Tolstoy’s) beliefs about the
proper response to life and death?
3. Do you think that a “correct” way to live exists for all persons? Or does the
answer depend on the person and his or her situation?
4. Does Ivan’s attitude toward death resemble any of the death attitudes from this
chapter? As a twenty-first century reader, can you identify with Ivan’s
struggle? Is any of it recognizable in our own culture?

Modern Medical Care and Cultural Ideals of Dying

In the first half of the twentieth century, the Victorian romanticization of
death evolved into the denial of death. Like Ivan Ilych’s doctors, American
physicians refused to discuss diagnoses of cancer and terminal illness, even
with dying persons. Death, in short, was swept under the rug. As Geoffrey
Gorer (1905–1985) observed in his classic discussion on the subject in
Britain, death replaced sex as an unspeakable, “pornographic” topic.31 From
the late nineteenth to the mid-twentieth century, the denial of death shaped
care of the dying, which moved largely from the home to the hospital and
increasingly took the form of a battle for survival. After the 1970s, however,
reformers, patients, and their families rebelled against dying in highly
technological intensive care units.
In general, new scientific hospitals of the early twentieth century
strenuously avoided any association with mortality. Hospital landscapes and
buildings were designed to minimize the visibility of death. As they do today,
most hospitals identified themselves as saving lives rather than caring for the
dying, a point driven home in marketing campaigns. “Incurable cases,”32
such as tuberculosis and cancer patients, might be denied admittance to
private hospitals, which often transferred dying patients to almshouses to
keep their mortality statistics low – a strategy that, in turn, inflated the
mortality rates of public hospitals. Death of the poor was an especially
offensive presence for patients in the new private hospitals and challenged
the hospitals’ financial health. Along with overcrowding, hospital employees
often expressed prejudice against the poor, a point illustrated by a
Philadelphia intern’s comments about a patient close to death: “The
unfortunate being certainly has suffered horribly, and would arouse
everyone’s sympathy did he not also call up feelings of utter disgust for his
character.”33 These comments, which appeared in 1908, could just as easily
have been made about “drug abusers,” “bouncebacks,” and “noncompliant
patients” in public hospitals over a century later.
In 1910, the vast majority of Americans still died at home. Over the next
fifty years, as rates of death in hospitals rose dramatically, patients became
increasingly isolated from family and friends and suffered the loss of power
over their dying as well. Medical attitudes toward care of the dying were
typified by avoidance and detachment. In 1929, physician Alfred Worcester
criticized his colleagues for their impersonal approach. “Those who are
interested only in the diseases of their patients,” he wrote, “find little that is
noteworthy beyond the mere fact of fatality and the possible opportunity of
verifying their diagnoses.”34 Even nurses, who performed the actual daily
care of the terminally ill, were not instructed in compassionate care of the
dying. By the early twenty-first century, roughly 25 percent of Americans
died at home while 75 percent died in some form of institution (hospital,
nursing home long-term care facility).35
As new technologies preserved the lives of patients who would otherwise
have died, dying in hospitals became both more common and more
problematic. As we saw in Chapter 4, during a 1952 polio epidemic,
Copenhagen physicians developed a new ventilation technique (IPPV) that
pushed air into the lungs through an endotracheal tube inserted through the
mouth or nose.36 Soon, machines known as mechanical ventilators or
respirators spread throughout Europe and the United States and became the
core of new “intensive care” units. Modern ICUs were designed to maintain
normal bodily functions for patients with the most severe illnesses and
injuries. In addition to mechanical ventilators, ICUs came to contain cardiac
monitors, external pacemakers, defibrillators, dialysis equipment, various
intravenous lines and nasogastric tubes, suction pumps, catheters, and a wide
array of drugs for curative treatment and pain relief.
For all their success in saving lives, mortality rates in ICUs ranged from
10–20 percent, creating the frightening prospect of patients dying alone in a
faceless medical institution, connected to machines and separated from loved
ones. In some public hospitals in the 1960s, it was not uncommon for staff to
virtually abandon the dying and to discourage communication between dying
patients and their families.37 In one of history’s painful ironies, medicine’s
great success in keeping people alive also had the effect of prolonging dying
and suffering. Critics argued that the high-tech “rescue” mentality of modern
medicine was distorting the process of dying and denying its inevitability.
The hospice movement, founded in 1967 by English nurse, social worker,
and physician Cicely Saunders (1918–2005), aimed to increase awareness of
death as a natural process, to relieve unnecessary suffering, and to “restore
dignity to the dying.”38 Saunders’ vision was to create institutions that would
provide compassionate care for those with incurable diseases. “When we
chose that ancient word ‘hospice,’” she wrote,

we joined a long tradition of offering hospitality and care which dates, in

Europe, from the 4th century of the Christian era. At that time a
welcome was given to pilgrims and travellers as well as to the sick and
 destitute. There was a strong tradition of honour for ‘Our Lords the
Sick’ as saluted by the Knights Hospitallers of the Order of St John of
Jerusalem in their statutes of the 12th century. Those who needed care
were to be welcomed and served with honour and respect.39

Following Saunders’ lead, the National Hospice Organization was founded in

1978; by 1997, more than 2,800 hospices existed throughout the United
States.
The development of hospice was part of a broader cultural movement to
break through the denial of death and humanize care of the dying. Among
those activist critics and practitioners, none was more instrumental than
Elizabeth Kübler-Ross (1926–2004), the physician and psychiatrist whose
influential On Death and Dying (1969) found that hospitals overtreated dying
patients, separated them from their families, and abandoned them when they
were most needy. “Death has become a dreaded and unspeakable issue to be
avoided by every means possible,” she wrote of American society, and
continued: “other societies have learned to cope better with the reality of
death than we seem to have done.”40 In secular terms reminiscent of the
medieval “tame death” and Ars moriendi traditions, she adds: “if we can learn
to view death from a different perspective, to reintroduce it into our lives so
that it comes not as a dreaded stranger but as an expected companion to our
life, then we can learn to live our lives with meaning – with full appreciation
of our finiteness, of the limits of our time here.”41 In her well-known five-
stage theory, Kübler-Ross sees the onset of death as a great opportunity for
growth, as a time of personal transformation and even triumph. If we talked
more about death, she argued, then it would become less frightening.
Both the modern hospice movement and Kübler-Ross’s five steps were
driven by the desire of individuals to regain control over the dying process.
But what happened when a person lost the ability to make decisions? Or
when medical technology prevented death only by keeping the individual
barely alive, in an unconscious “vegetative” state? A host of new
technologies, from mechanical respirators to the development of organ
transplantation, brought new and confusing ethical problems with them as
well. One problem was how to determine when a person had died. In 1963, a
young British man suffered severe brain damage and was put on an artificial
respirator. With consent from his wife, his kidney was removed for
transplant; shortly afterward, the respirator was removed and his heart and
lungs ceased functioning. An inquest found that, since the time of death had
occurred after the kidney was removed, the transplant violated the “dead
donor rule,” which requires patients to be declared dead before the removal
of life-sustaining organs for transplantation.42
A more famous case involved South African surgeon Dr. Christiaan
Barnard (1922–2001), who performed the first heart transplant in 1967. Like
other transplants, the procedure required that the donor organ be removed as
quickly as possible to maximize the likelihood of a successful transplant. To
gain time for removing and transplanting the heart of a brain-injured and
comatose patient, Barnard took her off life support. Rather than wait for her
heart to stop beating, he injected potassium into her heart and paralyzed it,
rendering her technically dead by the whole-body standard. Did Barnard kill
her? Did he simply withdraw treatment from a woman who was dying? Was
she virtually dead? Or already dead?
These transplant cases raised troubling ethical questions: What did the
terms “alive” and “dead” really mean in circumstances of artificial
respiration? Could a patient who seemed to be “alive” actually be “dead”?
When could a ventilator be turned off? When could an organ be “harvested”?
These questions prompted physicians and others to challenge the traditional
cardiopulmonary criteria of death and move toward a new definition known
as “brain death.” In 1968, a Harvard committee recommended that a patient
in an irreversible coma could be considered dead if he or she: (1) is unaware
of and unresponsive to all external stimuli; (2) exhibits no muscular
movement or breathing (when the respirator was turned off for three
minutes); (3) shows no pupil reflexes when a light is shone into the eye; (4)
exhibits a flat line when tested for brain activity on an electroencephalograph
(a test recommended but not required).43 This was later known as the whole-
brain definition of death.
The Harvard committee’s recommendations were widely endorsed yet
hotly debated. Others put forward the notion of “higher-brain” death, which
considers a person dead when the cerebellum – the neural basis of
consciousness – is destroyed, even if the lower brain (brain stem) is still
functioning.44 Recognizing the need for consistency, a presidential
commission in collaboration with the National Conference of Commissioners
on Uniform State Laws, the American Medical Association, and the
American Bar Association used the whole-brain standard to draft a state law
to determine death in all circumstances. This 1981 law, known as The
Uniform Determination of Death Act (UDDA), states that “An individual
who has sustained either (1) irreversible cessation of circulatory and
respiratory functions, or (2) irreversible cessation of all functions of the entire
brain, including the brain stem, is dead. A determination of death must be
made in accordance with accepted medical standards.”45 Although the
Uniform Determination of Death Act is accepted as law in all states, there are
still religious groups that consider a person alive until every cell in the body
is dead.
As public interest moved from defining death for purposes of organ
transplantation to clinical care of the dying, the stakes grew much higher. In
the 1970s, medicine came under increased scrutiny for scandals in
experimentation with human subjects.46 Journalists revealed that physicians
in prominent hospitals were making unilateral decisions about withholding or
withdrawing treatment from premature or damaged infants. The public
rebelled. In 1974, an array of popular newspaper articles and academic
symposiums explored the topic, and a U.S. Senate committee listened to three
days of testimony on the subject of “death with dignity.”
But the event that transformed the cultural landscape and sparked what
became known as the right-to-die movement, took place in 1975, when
Joseph and Julia Quinlan asked that their comatose daughter, twenty-one-
year-old Karen Ann, be taken off a respirator. After Karen Ann’s doctor and
the hospital administration refused to disconnect the machine, her parents
petitioned the Supreme Court of New Jersey, which ruled in their favor.
When the respirator was finally removed, Karen lived in an unresponsive
condition for nine years before she finally died. All the while, the case
occupied the national consciousness and sparked fierce debate. As a
comatose young woman who was tethered to a breathing machine, Quinlan
was a new sort of person – not fully alive but not yet dead. Discussions raged
on about who is in charge of a person in a coma, who authorizes death, and
what to do about someone who, like Karen Ann, occupies the bizarre state of
“death in life.”47
In these debates, there were those who advocated “euthanasia,” which by
then had come to mean active mercy killing. The term, however, smacked of
Nazism and of the early twentieth-century American eugenics movement and
in any case did not attract broad support. Thus, in 1974 the Euthanasia
Society of America changed its name to the Society for the Right to Die,
signifying the crucial distinction between active hastening of death and
foregoing or withdrawing treatment. In the Netherlands, euthanasia and
assisted suicide have been openly tolerated since the 1980s. In 2002, a Dutch
law took effect specifying the conditions under which these ways to hasten a
patient’s death were legally acceptable. In contrast, neither the medical
profession nor the American public widely supported the active taking of
another’s life, although this practice took (and still takes) place quietly in
cases of extreme pain or hopelessness. In contrast, as of 2013, three states
permitted physician-assisted dying, reflecting the conviction that self-
determination includes the right to take one’s own life. In Oregon, for
instance, where doctor-assisted suicide has been legal since 1994, one doctor
explained the significance of this right for her patient Cody, who suffered
from terminal cancer: “Cody taught me that ‘do no harm’ is going to be
different for every patient. Harm, for her, would have meant taking away the
control and saying, ‘No-No-No, you’ve got to do this the way your body
decides,’ as opposed to the way you, as the person, decides.”48 The rallying
cries of “death with dignity” and the “right to die” marked an urgent personal
and political search for a “good death.”
Perhaps the most controversial and highly visible actor in the controversies
over end-of-life care was the pathologist Dr. Jack Kevorkian (1928–2011),
who claimed to have helped as many as 130 terminally ill patients to die –
both by giving them the means to end their lives (assisted suicide) and by
injecting a lethal dose of medication at their request (voluntary euthanasia).
In 1999, Kevorkian was convicted of second-degree murder for his role in a
euthanasia case and served eight years in prison. The legal response to
Kevorkian’s activities indicated that a minority of Americans, under strictly
defined circumstances, were open to physician-assisted suicide but opposed
to euthanasia. As of 2013, the American Medical Association was opposed to
both.
What, then, was the status of death and dying in the second decade of the
twenty-first century? In the United States at least, the medical and
technological imperative to cure disease continues to trump the moral
imperative to provide low-tech care and support to those who are dying, often
after long and agonizing periods of chronic illness. Despite the Patient Self-
Determination Act of 1990, relatively few people take advantage of the legal
means to direct their end-of-life care after they lose capacity. Studies
continue to show that pain control is often inadequate and that physicians
often do not understand the needs and desires of dying people. In contrast,
hospice care is rapidly expanding, paid for by both Medicare and private
insurance companies as well as by individuals.
Culturally speaking, dying is in general more visible, less formally
religious, and more individualized than in the past. A profusion of hopeful
narratives address death both personally and publicly: in illness narratives
(known by scholars as “pathographies,” see Chapter 7); through news or
reality shows charting the struggle of the sick or dying; among an assortment
of grief specialists or “bereavement counselors”; and in popular books and
films about death, grief, and loss. Whether the subject is treated with
compassion, as in Tuesdays with Morrie (1997), or with black humor, as in
the British comedy Death at a Funeral (2007), death is no longer hidden or
“pornographic.” At the same time, while many death practices are still
informed by religion or a religiously inspired ethos, not all Americans
subscribe to the traditional, Christian version of a “good death.” Indeed, in
recent years persons planning funerals have abandoned traditional classical
music, like “Amazing Grace” or Mozart’s Requiem, in favor of more modern
songs like “Highway to Hell,” “Stairway to Heaven,” or Frank Sinatra’s “My
Way.” American death practices have even seen the rise of virtual forms of
grieving: some websites offer a “virtual cemetery” in which a deceased’s
loved ones can log on and contribute photographs, stories, poems, and
memories – a sort of Facebook for the dead.49 Today, it seems, there is no
single way to die well.
Figure 6. Baile con la Talaca (Dance with Death), 1984, Luis Jimenez 1940–2006,
 The Museum of Fine Arts, Houston, Gift of the Estate of Frank Ribelin © 2013 Estate of
Luis A. Jimenez Jr./Artists Rights Society (ARS), New York.

Does he know he’s dancing with Death? Death looks pretty energetic, don’t you
think? Would you have pictured Death as being so lively? Would you have pictured
Death as a female skeleton? Would you have pictured death as personified in any way?
Death is represented as a skeleton on the title page of Vesalius’s Fabrica, published in
1543, so we know this convention goes back almost 500 years. Also, as noted in this
chapter, the danse macabre began to appear after the plagues of the fourteenth and
fifteenth centuries. Baile is clearly of our time. Compare the settings: the Fabrica
skeleton stands in an institution of some type, indicated by the elaborate columns, while
Baile offers no architectural context. To lend it a setting, one might think of a dance hall
or honky-tonk.
Since it depicts a dance, it’s appropriate that Baile is full of dynamic, active lines. Can
you find any lines in the Fabrica as lively as the curving edge of Death’s skirt? Notice
how the figures break out of the ground of the image, the man’s right elbow and foot in
particular. Even the tonality, the distribution of light and dark areas is lively, especially
when compared with the uniform tonality of the Fabrica. In fact, the lights and darks in
the two pictures are reversed. Baile almost appears to be an x-ray of the action.
Returning to the introduction of this chapter, how does Baile represent death as “a fact
of the imagination,” as “a matter of cultural and personal meaning?”
Search the web for the personification of death, images of the “dance of death,” and
the works of Luis Jiménez (1940–2006).

Summation
This chapter explored the social and cultural history of death and dying in the
west. Beginning with a discussion of how life and death were understood in
antiquity, it explored the medieval ideal of the “tame death”; the plague’s
contribution to early modern images of death as the “king of terrors”; the
eighteenth-century Enlightenment’s growing interest in the precise, scientific
nature of death; nineteenth-century Victorian romanticization of and denial of
death; and the increasing medicalization of death in the twentieth century.
Then, with a focus on contemporary end-of-life issues in America, it
considered how we might address some of the questions facing us when we
think about what it means to die in the twenty-first century. Overall, this
chapter emphasized that the meaning of death and dying has changed
throughout history, and that a greater awareness of this history can help us
understand and enhance our thinking about death and dying today.
Exercises for Critical Thinking and Character
Formation
Questions for Discussion
1. Has a close friend or anyone in your family died? If so, how and
where were they cared for at the end? How did it affect you?
2. What do you consider an ideal or “good” death?
3. Is your ideal similar to any of the attitudes toward death in this
chapter?
4. The twentieth century has seen a renewed interest in definitions of
death. How are these definitions relevant to the controversial area of
organ transplantation?

Suggested Writing Exercise

Imagine the ideal circumstances of your own death and write for five to ten
minutes. Where would you die? Who would be present? Who would deliver
the eulogy? What would they say?

Suggested Viewing
Grave Words: Tools for Discussing End of Life Choices (1996)
How to Die in Oregon (2011, Documentary)
Million Dollar Baby (2004)
Ikuru (1952)
Please Let Me Die (1974, Documentary)
The Savages (2007)
The Secret Garden (1993)
Six Feet Under (2001, Television series)
The Undertaking (2007)
You Don’t Know Jack (2010)

Further Reading
 Mitch Albom, Tuesdays with Morrie
Simon Critchley, The Book of Dead Philosophers
Charles Dickens, A Christmas Carol
C. S. Lewis, A Grief Observed
Thomas Lynch, The Undertaking: Life Studies from a Dismal Trade
Philip Roth, Everyman
Leo Tolstoy, The Death of Ivan Ilych

Advanced Reading
Philippe Ariès, The Hour of Our Death
Peter Filene, In the Arms of Others: A Cultural History of the Right-To-
Die in America
Elizabeth Kübler-Ross, On Death and Dying
Jessica Mitford, The American Way of Death Revisited
Sherwin Nuland, How we Die: Reflections on Life’s Final Chapter
Mary Roach, Stiff: The Curious Lives of Human Cadavers

Organizations
The Association for Death Education and Counseling, The Thanatology
Association
www.adec.org
The Compassionate Friends: Supporting a Family after a Child Dies
www.compassionatefriends.org
Compassion & Choices
www.compassionandchoices.org/
National Association for Home Care and Hospice
www.nahc.org

Journals
Omega: Journal of Death and Dying
Part II Literature, the Arts, and
Medicine
 Part Overview
Literature, the Arts, and Medicine
The term “the arts” derives its meaning from the context in which it is used.
“Fine arts” refers to activities and products of the imagination such as music,
painting, and sculpture, which appeal to a sense of beauty. Branches of
learning such as history, languages, literature, philosophy, and religion are
traditionally known in academic parlance as liberal arts. “Arts and sciences”
distinguishes the humanities, also known as human sciences, from natural
sciences and social sciences. Similarly, in an older idiom, “letters and
sciences” draws the same distinction but gives literary learning pride of place
in the humanities. And there are “arts of,” as in martial arts and healing arts.
This section explores some contemporary connections between humanistic
study and the healing arts, giving special attention to relationships between
visual and verbal meaning.
Art both mirrors and challenges our settled perceptions. John Berger
(1926–) writes, “Seeing comes before words ... [and] the way we see things is
affected by what we know or what we believe. We only see what we look at.
To look is an act of choice. As a result of this act, what we see is brought
within our reach.”1
Conversely, visual images also shape the way we think.2 Being bombarded
with images, as we are, is not conducive to reflection. Pausing to look
questioningly at a painting or photograph, or to critically view a film or
television show prompts us to think more deeply about what we are seeing. In
a discussion of her experience teaching medical students utilizing a range of
visual materials, Mary Winkler describes how asking students to look
carefully at “artworks that treat such subjects as death, pain, aging, fear,
bureaucratic indifference, and poverty,” and then asking them to consider the
question “What do you see?” elicits empathy and “reinforce[s] the idea of our
common humanity and the vulnerability that we all share.”3 You will find
images not only in this section but throughout this text book that encourage
you to reflect, probe for deeper meanings, articulate personal reactions.
 As with images, the written word, too, can shape us by inclining us to
introspection and circumspection and by inviting us into the lives of others.4
Reading narratives of illness and stories of doctoring extends the reach of our
minds and sensibilities, and deepens fellow feeling. This is important
because, as Clifford Geertz (1926–2006) observes, “the reach of our minds,
the range of signs we can manage somehow to interpret, is what defines the
intellectual, emotional and moral space in which we live.”5 Vicariously
experiencing, through the prism of poetry and the medium of memoir, what
others have been through illuminates that space and makes it more
capacious.6 We know more and understand more fully for having
experienced, at one remove, what it is like to hurt or heal.
What is more, we gain self-knowledge at the level of feeling. “The power
and charm of the arts is that in them we discover the life of feeling that might
sleep in us unregarded without their help .... It is as though we don’t
understand our own feelings until we are confronted with a contrived state of
affairs that isn’t a direct rendering of our feelings but somehow expresses
their tone and form.”7 Literature and the arts, as they relate to medicine, are a
learning laboratory wherein aspirants to the helping professions enter the
lives of the ill where the hurt and anxiety are imaginatively real, to
vicariously probe and ponder under the tutelage of poetry and story, memoir
and moving picture.
In this section, we will ask why sickness prompts us to storytelling; how
popular media influences our views about what it means to grow old or live
with a disability, or to practice high-tech hospital medicine; how poetry
makes language care; why it’s important for doctors to strive to merge
medical and humanistic sensibilities; and how student-teacher relations affect
the moral formation of future health care professionals. In considering these
questions, we will be looking closely and reading inquiringly for practical
wisdom, heeding Nietzsche’s counsel that to read well means “to take time ...
to read slowly, deeply, carefully, considerately, with doors left ajar, with
delicate fingers and eyes. ...”8
 7 Narratives of Illness
All sorrows can be borne if you put them into a story or tell a story
about them.1
– Isak Dinesen

Abstract
This chapter explores how we narrate our experiences of illness.
Beginning with a discussion of how narrative shapes our experience
of brute fact into intelligibility and meaningfulness, it examines four
narratives of illness: Oliver Sacks’s A Leg to Stand On, William
Styron’s Darkness Visible, Lucy Grealy’s Autobiography of a Face,
and Aaron Alterra’s The Caregiver. Then, with a focus on the
relationship between narrative interpretation and our encounters with
illness, it considers how reading narratives of illness attentively,
expectantly, and reflectively can heighten our powers of perception,
deepen our self-knowledge, and thicken our understanding of what
it’s like to suffer through an illness or cope with an injury.

Introduction
This chapter discusses a type of illness narrative known as “pathography,” a
subgenre of autobiography and biography. And it offers “readings” of four
such narratives, each with a different focus – loss of bodily integrity, mental
collapse, disfiguring cancer, and incurable degenerative disease – and all
authored by professional writers.
 Why do we tell stories? How can we not? We are born storytellers or,
better, we live our stories before we tell them. Each of us is born into a
family, a community, a culture from which we derive our initial sense of self
and of what life is like. Without realizing it, we assimilate and live by stories
that rescue us from a sequence of disconnected happenings. Over time, as we
experience other ways of seeing the world and thinking about things, we may
question and begin rewriting some of these taken-for-granted storylines
according to our own lights. But as long as all goes well with us, we tend to
live our story without giving it much thought. It is only when we ask why
things happened the way they did that a narrative impulse is triggered.
Serious illness and injury are especially powerful events that interrupt the
largely unself-conscious flow of our lives and prompt the impulse to emplot
them, that is, shape them into a livable story, a narrative of an experience of
illness that scholars call a pathography.2
Pathographies, whose numbers expanded rapidly in the final decades of the
twentieth century, first appeared in the middle of the century and coincided
with the rise of heroic rescue medicine. John Gunther’s (1901–1970) memoir,
Death Be Not Proud, for example, chronicles the fifteen-month-long saga of
surgery and medical treatments aimed at curing his sixteen-year-old son’s
ultimately fatal brain tumor.3 In Death of a Man, Lael Tucker Wertenbaker
(1909–1997) tells the story of her husband Wert’s struggles with incurable
metastatic colon cancer and her vow to help him die by his own hand when
suffering became unbearable and the end was near.4
Well into the 1970s, narratives of illness continued to focus principally on
living with life-threatening conditions and care of the dying. Among them are
Stewart Alsop’s (1914–1974) Stay of Execution,5 Betty Rollins’s (1936–)
Last Wish,6 and Stephen S. Rosenfeld’s (1932–2010) The Time of Their
Dying.7 Beginning in the 1980s, the genre expanded. Memoirs of dying
continued to predominate but were now augmented by accounts of living
with maladies of mind and body, soul and self.
The study of pathography, as with medical humanities generally, is part of
a larger narrative turn that has characterized the humanities and interpretive
social sciences in recent decades.8 Anne Hunsaker Hawkins writes,
“Pathographies interpret experience, and they do so in a way that discloses
certain important mythic attitudes about illness and treatment. Mythic
thinking of all kinds becomes apparent in that delicate autobiographical
transition from ‘actual’ experience to written narrative, since this transition is
one that constructs necessary fictions out of the building blocks of metaphor,
image, archetype, and myth.”9
Hawkins’s book is a treatise on the ways in which authors of illness
narratives, in the process of recording what they have been through, rewrite
their story in the light of received wisdom captured in metaphors of journey
and battle, and myths of death and rebirth, thereby taking their story from
brute fact to intelligibility and meaningfulness. The premise of Hawkins’s
project is that studying pathographies promises to restore the patient’s voice
to patient-physician encounters. Moreover, studying illness narratives
positively contributes to shaping students’ emotional, intellectual, and moral
capacities – “not a bad start,” as Robert Coles (1929–) has remarked, “for
someone trying to find a good way to live this life: a person’s moral conduct
responding to the moral imagination of writers and the moral imperative of
fellow human beings in need.”10
In a related analysis, Arthur Frank proposes a tripartite typology of cultural
narratives – the restitution story, the chaos story, and the quest story – which
illuminate and shape the composition of pathographies as authors construct
an account of their unique experiences. Frank believes that awareness of
these typologies may help health care professionals to attend more carefully
to patients’ stories of illness.11 Elsewhere he further argues that “Knowing
illness as a series of dramas enhances the capacity of the ill to find meaning
in their plight.”12 There is the drama of genesis that concerns itself with the
origin and cause of an illness. There are dramas of fear and loss, of meaning,
and of self, this last portraying the sick person’s struggle to recognize his or
her “new” self once the worst is over.

A Leg to Stand On
Oliver Sacks’s (1933–) A Leg to Stand On is one such account and is notable
for its marvelous mixture of neurological observation, psychological insight,
mystical experience, and speculative vision.13 Throughout, music is the
metaphor of action, and acknowledgement of the uncanny is the intuitive
counterpart of body facts. The book begins with the author’s accident and
injury, proceeds through a meticulous account of the experience of illness
and convalescence, and ends with provocative reflections on the need for “a
neurology of the soul.”14
We are incarnate and we experience ourselves as embodied. Bodily injury
threatens to undermine our sense of who we are. So it was for Sacks when,
having survived a harrowing hiking accident, a new horror began to dawn in
the form of a radical breach in his settled perception of this own body. The
relation between his left leg, which dangled “like a piece of spaghetti,” and
the rest of his body was obscure and puzzling. It was not simply that the
quadriceps had visibly atrophied beneath the cast following surgery, but that
the muscle was completely atonic. Try as he might, the patient could not
contract the muscle. The frustration attendant upon physical incapacity was
compounded by a sense of impotence and futility.
Still more troubling was the thought that beyond this physical incapacity
was a vacancy of mind where once there had been tacit knowledge of how to
flex the muscle. “I had the feeling that something had happened ... to my
power of ‘thinking’ – although only with regard to this one single muscle ... I
had ‘forgotten’ something ....”15 And no strenuous effort of will availed in
retrieving that lapsed memory.
Then Sacks’s experience took an uncanny turn. The patient was awakened
from nightmarish sleep by an alarmed nurse to find that unbeknownst to him
the “dead” left leg had fallen half off the bed. He could not believe his eyes.
He could see that the “cylinder of chalk” had moved, but he had no sense that
that was so. “I knew not my leg.”16 It was as if, absent its familiar feeling and
function, the leg had become an unrecognizable member of the body
commonwealth.
Sacks decided to explore this experience of alienation in all its detail, or
rather to peer into the hole in his personal reality where once there had been a
leg to stand on. Medically, his condition continued to improve. Anatomically,
healing was occurring predictably. But personally, existentially – the leg
remained lifeless and alien. Sacks came to the conclusion that he was dealing
not with a problem that required a solution but rather with a mystery which
he had to face. Mendelssohn’s Violin Concerto provided an early clue to
fathoming the mystery. Music promised renewal and indeed seemed “the
very score of life.”17
Attempts at rehabilitation advanced falteringly, and the mystery remained.
Eventually, “with the return of my own personal melody which was
somehow elicited by, and attuned to, the Mendelssohnian melody,”18 Sacks
remembered how to walk – not by calculation or deliberation but by
recollection. The mystery, though not dispelled, was displaced by grace, “the
prerequisite and essence of all doing.”19 Now convalescence was possible –
putting behind the moral infancy of patienthood, returning to fluency of
motion, and celebrating the sacrament of thanksgiving.
One great merit of Sacks’s pathography is that it richly reintroduces the
patient and his experience of ailing into a drama of injury and recovery that
prompts a reconsideration of the diagnostic art. Confronted with an
experience of severance, of absence, analysis is of limited use. Needed in
addition to the dissecting, disconnecting activities of analysis are painstaking
attentiveness to the detail and pattern of experience, appreciation for nuance
in that experience, and constructive imagination, even in the face of the
uncanny.

Darkness Visible
Of several illness narratives that appeared in the 1990s, three are particularly
noteworthy: William Styron’s (1925–2006) Darkness Visible: A Memoir of
Madness,20 Lucy Grealy’s (1963–2002) Autobiography of a Face,21 and
Aaron Alterra’s (1913–2013) The Caregiver: A Life with Alzheimer’s.22
Borrowing a phrase from John Milton’s (1608–1674) Paradise Lost as the
title of his “memoir of madness,” William Styron takes the reader into the
depths of a serious depressive illness that nearly killed him. Prize-winning
author of critically acclaimed novels, Styron enters a months-long descent
into “despair beyond despair.”23 The onset of severe depression that stretched
well beyond the doldrums of everyday life was marked by self-loathing and
“gloom crowding in on me, a sense of dread and alienation and, above all,
stifling anxiety.”24
Shortly prior to departing for Paris in the autumn of 1985 to accept a
literary award, and feeling that something was seriously wrong with him,
Styron made an appointment with a psychiatrist. For several months he had
attributed his increased irritability and anxiety to his having abruptly sworn
off whiskey following forty years of heavy drinking. Lately, however, he had
begun to fear that his “mind was dissolving.”25 With the encouragement of
the psychiatrist, Styron made the trip, but once in Paris he became confused
and his behavior turned erratic.
Back at home, he slipped ever further down the spiral of “anxiety,
agitation, [and] unfocused dread,”26 suffering “a veritable howling tempest in
the brain.”27 His body became sluggish, his responses slowed, his voice
turned wheezy and nearly disappeared. Libido vanished, and food was taken
merely for sustenance. Sleep was bought with the tranquilizer Halcion, to
which he became addicted. “Death was now a daily presence ... blowing over
me in cold gusts.”28

Case Study: William Styron on Depression

In the following passage, Styron describes his encounter with depression – especially the
difficulty of rendering it comprehensible to anyone who has not experienced depression
for themselves.
“Depression is a disorder of mood, so mysteriously painful and elusive in the way it
becomes known to the self – to the mediating intellect – as to verge close to being
beyond description. It thus remains nearly incomprehensible to those who have not
experienced it in its extreme mode, although the gloom, “the blues” which people go
through occasionally and associate with the general hassle of everyday existence are of
such prevalence that they do give many individuals a hint of the illness in its
catastrophic form. But at the time of which I write I had descended far past those
familiar, manageable doldrums. In Paris, I am able to see now, I was at a critical stage in
the development of the disease, situated at an ominous way station between its
unfocused stirrings earlier that summer and the near-violent denouement of December,
which sent me into the hospital ....
For those who have dwelt in depression’s dark wood, and known its inexplicable
agony, their return from the abyss is not unlike the ascent of the poet, trudging upward
out of hell’s black depths and at last emerging into what he saw as “the shining world.”
There, whoever has been restored to health has almost always been restored to the
capacity for serenity and joy, and this may be indemnity enough for having endured the
despair beyond despair.29
E quindi uscimmo a riveder le stele.
And so we came forth, and once again beheld the stars.”

1. How would you describe depression? Do you think it can be expressed in

words? In images? Do you think it is even possible to describe depression – or
any illness?
2. Why do you think Styron chooses to write about his illness? How might the act
of writing have the potential to heal?
 3. Styron concludes his pathography with a line from Dante’s Inferno. What do
you think that line means? What mythic or metaphorical image does it make
use of?

Neither psychotherapy nor medication were effective in treating Styron’s

symptoms, which now included an acute fear of abandonment and fantasies
of suicide, taken to the point of locating the means to accomplish it. Styron
methodically prepared to dispose of the valued notebook in which over the
years he had committed ideas and observations for his writing. With the
future slipping rapidly away, Styron engaged in a foreshadowing of his self-
destruction by meticulously preparing the notebook for burial, assembling
“the new roll of Viva paper towels to wrap the book, the Scotch-brand tape I
encircled it with, the empty Post Raisin Bran box I put the parcel into before
taking it outside and stuffing it deep down within the garbage can, which
would be emptied the next morning. Fire would have destroyed it faster, but
in garbage there was an annihilation of self appropriate, as always, to
melancholia’s fecund self-humiliation. I felt my heart pounding, and knew
that I had made an irreversible decision.”30
Unable to sleep and watching a scene in an old movie filmed in a music
conservatory, Styron hears a contralto voice singing a soaring passage from
Brahms’s Alto Rhapsody and, overwhelmed by a flood of emotion at the
thought of all that he was about to abandon, wakes his wife, Rose, and plans
are made for his hospitalization. Over the course of the ensuing seven weeks,
Styron’s condition steadily improved. He attributes this slow retreat from the
precipice on which he had stood at the time of his admission to a crucial
adjustment in his medication, the compassion of the staff, and, importantly, to
the hospital itself which for him was “a way station, a purgatory,”31 “a
sanctuary where peace can return to the mind,” “a refuge,”32 “my
salvation.”33
On the mend and able to return to his writing, which had been defunct,
Styron reflects on the near-fatal calamity he had suffered. His review of the
psychiatric literature impressed him with the idiopathic nature of clinical
depression and “the malady’s all but impenetrable mystery.”34 As to what
triggered his crisis, he wonders whether alcohol withdrawal may have played
a role, or turning sixty, “that hulking milestone of mortality.”35
Dissatisfaction with his work? His father’s battle with depression? Any and
all of these seemed plausible.
In the end, Styron is most drawn to the likelihood that the death of his
mother when he was thirteen, and his subsequent inability to mourn her loss,
had shaped his life and work in ways that seemed to him now to make
eminent sense. “Loss,” he writes, “in all of its manifestations is the
touchstone of depression – in the progress of the disease and, most likely, in
its origin.”36 Moreover, he ventures, the repressed rage over the loss of his
mother may have both precipitated his life-long self-destructive behavior (his
heavy drinking and, later, thoughts of suicide) and fueled his desire to
overcome it: “my own avoidance of death may have been a belated homage
to my mother. I do know that in those last hours before I rescued myself,
when I had listened to the passage from the Alto Rhapsody – which I’d heard
her sing – she had been very much on my mind.”37
Recalling Hawkins’s analysis of mythic dimensions of illness and Frank’s
typology of cultural narratives, we hear in A Leg to Stand On echoes of epic
battle followed by restoration of bodily integrity, accompanied by the
metaphor of music. And following Styron’s story may be usefully enhanced
by invoking metaphors of chaos and the threat of death, and eventual
restitution to a settled state of mind.
Figure 7. Fallen, Fallen, Light Renew, 2005, Mary McCleary, 1951–, Courtesy
Moody Gallery, Houston, TX © Mary McCleary 2005.

The relationship between a work of art and its title is not always so direct as it is for
Eric Avery’s Emerging Infectious Diseases. Title and work can be in dialogue or in
tension. Mary McCleary’s Fallen, Fallen, Light Renew creates a connection between
light and a falling figure. Let’s begin with the picture and the topic of this chapter,
Narratives of Illness.
As we learn in this chapter, we turn to narrative to make sense of events that disrupt
the unselfconscious story that we tell about who we are. The young girl in McCleary’s
painting certainly appears to be experiencing a frightening event, even if it’s only a
dream. Can you remember a time when you “fell” into a new situation? Look carefully
at her face. Can we interpret the look on her face as the dawning of self-consciousness
and – considering her possible age – the shock of adolescence?
The title seems to support this interpretation. It’s taken from the poem Introduction to
the Songs of Experience, by the English poet and artist William Blake, who also wrote
Songs of Innocence. Blake intended for the two series of poems to be read together in
order to show “the two Contrary States of the Human Soul.”
McCleary demonstrates that painting can explore contrary states as provocatively as
poetry or prose. Try to identify with the young girl’s dawning awareness of her situation.
 Go back to The Doctor, the picture that accompanied Chapter 1. How might Fallen,
Fallen, Light Renew represent the young patient’s experience of illness?
To see more works of Mary McCleary, visit: http://www.marymccleary.com/.
For the works of William Blake, visit: http://www.poetryfoundation.org/bio/william-
blake#poet.

Autobiography of a Face
Two evocative early lines frame the narrative of Lucy Grealy’s memoir,
Autobiography of a Face: The first is a question: “how do we go about
turning into the people we are meant to be?”38 The second, an observation:
“While our bodies move ever forward on the time line, our minds
continuously trace backward, seeking shape and meaning as deftly as any
arrow seeking its mark.”39 The question arises in response to the author’s
recollection of having seen a photograph of herself while working at a party
in her early teens, posing for the camera with her head turned and tilted so
that her hair camouflaged the right side of her face. The observation is
prompted by Grealy’s memory of the event that set in motion her search for
the significance of her troubled life journey.
It all began with a painful blow to the jaw in a fourth-grade game of dodge
ball that left her momentarily stunned but not incapacitated. Later that same
evening, however, a bothersome toothache made itself felt. A litany of
diagnoses ensued. Lockjaw, her brothers said. Probably a fracture, ventured
the family doctor. But the x-rays revealed a dental cyst that had to be
surgically removed. Six months later, a lump appeared on Grealy’s jaw and a
bony growth was evident on a follow-up x-ray. The dental surgeon assured
Mrs. Grealy that it was nothing to worry about. Unconvinced, she took her
daughter back to the family physician who diagnosed and treated a bad
infection and recommended a follow-up consultation with a leading head and
neck surgeon.
During this consultation, a detailed medical history was taken and a
physical examination done, including blood tests and a chest x-ray. Grealy
was admitted to the hospital where she underwent a bone marrow test and
diagnostic scans. Throughout this extensive workup, she remembered feeling
perfectly fine. In fact, it was all something of an adventure: “There were
definite problems to face here, but to me they seemed entirely manageable:
lie still when you’re told, be brave.”40
She was nine years old when she was told she had a malignancy – Ewing’s
sarcoma – and that she was going to have a big operation. Sometime later,
after several more surgeries, someone in her family casually mentioned
Lucy’s cancer, which came as a shock to Lucy: “In all that time, not one
person ever said the word cancer to me, at least not in a way that registered
as pertaining to me.”41 Later still, while working in a library in her teenage
years, she looked up Ewing’s sarcoma and discovered that it carried a 5
percent chance of survival.
Recovery from surgery to remove a tumor and a third of her jaw was slow
and arduous, and the radiation and chemotherapy treatments, for two and
two-and-a-half years, respectively, were extremely taxing. Chemotherapy,
especially, induced waves of vomiting. Her hair fell out. The oncologist was
inconsiderate and lacking in empathy.
In spite of it all, Grealy still believed her jaw was fixable. However, it was
beginning to dawn on her that she might look much worse than she had
supposed: “More than the ugliness I felt, I was suddenly appalled at the
notion that I’d been walking around unaware of something that was apparent
to everyone else. A profound sense of shame consumed me.”42
Throughout her teens Grealy endured taunts, bore the burden of isolation,
and experienced “the deep, bottomless grief I called ugliness.” She invented
various stratagems for coping with her sense of foreignness, none of which
had any lasting effect. In her mid-twenties, after nearly thirty operations, she
still could not reconcile the person she felt herself to be with the imposter in
the mirror: “It wasn’t only that I continued to feel ugly; I simply could not
conceive of the image as belonging to me.”43
A year passed during which the habit of refusing to look in mirrors or at
other reflecting surfaces provided some relief. It was then that she came to
the realization that what she was up against was a matter of perception. For
years she had been holding on to an image of her “‘real’ face, the one I was
meant to have all along ... my ‘original’ face, the one free from all deviation,
all error.”44 Consequently, she had never become acquainted with the face
she actually had, nor developed a relationship with the person she actually
was. With that simple but hard-won insight, she set out “to see if I could,
now, recognize myself,”45 and begin what the author calls her long “journey
back to my face.”46 In light of Hawkins’s analysis of mythic attitudes and
Frank’s cultural typology, the journey metaphor is clearly dominant in
Grealy’s story. It is not a journey that leads to restoration but one that
continues a quest for self-recognition.
Theorizing stories, as Hawkins and Frank do, may add to our appreciation
of narratives of illness, but only if they are used sparingly and judiciously.
Theories are abstract and aim for generalizability, whereas the strength of
stories lies in their singularity and particularity. Typologies deal in idealized
types and thus risk reification, mistaking an idea of, in this case, an
experience of illness, for the writer’s rendering of that experience.
Abstractions and ideal types have their place in interpreting illness narratives,
but only when used heuristically to support reading unmediated by
prefabricated categories. It is careful, expectant reading that reveals vital
connections between the written word and everyday experience. When one
adopts an attitude of knowingness, of reading with a preconceived idea of
what one is looking or listening for, one sacrifices the possibility of
discovering something new in the narrative, and forfeits the opportunity to
have one’s mind changed and one’s spirit enlarged, by what one reads.
Knowingness is the enemy of imagination.47

The Caregiver
Approximately 40 percent of all deaths in the United Sates occur following
an often-prolonged period of increasing frailty and dementing illness.
Approximately one-third of Americans live beyond the age of eighty-five
and, of these, roughly half suffer major cognitive impairment. Caring for
these dependent elders is mainly the responsibility of family members – as
Aaron Alterra (a pseudonym) discovered while trying to keep pace with
subtle changes in his wife’s behavior. It was more than momentary memory
lapses or forgetfulness or loss of words that he noticed. Stella (not her real
name) seemed increasingly unable to see connections between things, and
often was hesitant about what to do next. At times she looked blank and
absented herself. Alterra talked with their daughter and son and their spouses,
and the family physician. He consulted the Merck Manual of Geriatrics and
quickly concluded that “the word ‘dementia’ was ludicrous for the essentially
normal woman Stella was.”48
Aaron continued to take Stella to see Dr. Loughrand, her primary care
physician, who ordered tests to rule out other possible causes of Stella’s
symptoms and confirmed the likelihood that she was suffering from
Alzheimer’s. He urged Aaron to consider starting her on the only drug that
was showing any promise of slowing the progress of the disease. As the
evidence mounted, Aaron had to face the fact that his wife had an incurable,
disabling, degenerative disease of which she was unaware. On the advice of
his daughter, he contacted a psychologist who gave him what in retrospect
was invaluable advice. “It might be helpful if you thought of yourself as the
physician and Loughrand as somebody you respect enough to consult on
major decisions .... Alzheimer’s is not usually a doctor-intensive disease. It’s
more aide-and-caregiver intensive.”49
Armed with the startling insight that he himself, and not medical
professionals, was the primary caregiver, Alterra doggedly explored every
conceivable option for Stella’s care. A neurology consult? A psychiatry
consult? Aaron opted for both. The director of the local affiliate of the
Alzheimer’s Association suggested clinical trials in which his wife might
enroll. Stella was started on the drug Dr. Loughrand had mentioned and,
when her body proved unable to tolerate it, Aaron took the initiative in
getting her enrolled in a clinical trial. But while Stella regained her physical
balance (an eligibility requirement for entering a research study), weeks
passed and other capacities steadily declined.
Once Stella became a subject in the study to determine the experimental
drug’s efficacy, Aaron tried to persuade the clinical manager to tell him
whether his wife was assigned to the group receiving the drug or to the
placebo group. Learning that the research staff in a double-blind study is
unaware of who is getting what, Aaron took a sample of the substance Stella
was given to the hospital lab for testing, only to find that the lab outsourced
its work to another lab in a distant city. Aaron called that lab and was told
that they did not do testing for private individuals. Intent on leaving nothing
to chance, he took his case to the local police lab where no active ingredient
was found in the substance. Aaron withdrew Stella from the study and
enrolled her instead in an observation program with assurances that she
would be getting the best available medicine.
 All this time Aaron cared for Stella at home with the help of a housekeeper
who was intuitively attuned to his wife’s moods and needs. But as Stella’s
disorientation mounted, her speech became less and less intelligible, and her
ability to walk without assistance deteriorated, Aaron became distraught.
Stella and Aaron were in their early eighties at the time. Aaron recalls, “I
have rarely felt as entirely helpless in my life as I did then. Stella was
slipping out of my hands.”50
Aaron signed Stella and himself up for separate support group meetings at
the Alzheimer’s Association office. There he met kindred spirits whose
shared experiences reminded participants that they were not in this alone.
Practical tips were exchanged and confessions made. Seeking absolution for
his guilt over having behaved badly toward Stella, Aaron recounted for the
group an incident in which he had become uncontrollably angry at his wife
for having pulled the bedroom blinds off their rollers and, in her
bewilderment at what had happened, left them billowing across furniture and
floor. As he berated her, Stella had uncharacteristically begun to cry. Aaron
came to his senses, embraced her, and apologized. And then, “Consumed by
guilt, I went to her and again apologized. She had no idea what I was talking
about .... It was all gone from her memory.”51 The other members of the
caregiver support group understood and sympathized, seared as they too had
been by shame over similar experiences of their own.
Months, then years, of slow decline crept relentlessly along. When walking
became an insurmountable challenge, Stella became wheelchair bound.
Eating became ever more difficult even after Aaron happened onto an infant
feeding siphon that allowed him to squirt an ounce or two of nourishment
into Stella’s mouth without a struggle. In time, urinary incontinence became a
problem. Aaron would arise every day at four in the morning: “I turn on a
low light, tell her why I am disturbing her, and raise her enough to draw out
the top absorbent mat, leaving the dry undermat in place. I slip out her more
personal gauze pad and replace it with another, kiss her on the cheek, tell her
I’m done and to go back to sleep. Five minutes. She probably had not really
awakened.”52
So it went, day after day, until in year five when Aaron returned from a
few days away, Stella didn’t register his absence. What is absent is not real –
a saddening fact that Aaron has trouble acknowledging. And yet, he writes
upon reflection, when he was with her, which was most of the time, and
“when she says, ‘Love you, dear,’ as she says one way or another every day
without it staling – words, a glance, a hand held – it is not pro forma. It is not
calculated – she has no calculation in her – the moment is transcendent.”53
The title of Aaron Alterra’s memoir, The Caregiver, signals that the
primary focus will be on the author’s experience. In one sense, that is the
case. The climactic moment in the narrative is reached when Alterra realizes
that it is he who is his wife’s main caregiver. From then on, he becomes
Stella’s awareness, her protector from harm and custodian of her rights, her
guide in the wilderness that her once-familiar world had become, and a
steadfast presence in her otherwise bewildering circumstances. But because
caring happens between people, the narrative necessarily becomes no longer
his but theirs.

Conclusion
Narratives do not come from nowhere but are re-presentations of earlier
stories, themselves often versions of earlier stories still. In the construction of
narratives of illness, the writer strives to make existential sense of an
experience by placing it in the context of a larger narrative of suffering and
loss or healing, and then, in that light, giving a plausible account of what is
happening now. Narrative enhances understanding by retelling received
stories – some grand, others commonplace – bearing practical wisdom. In this
way, each of the interpretive re-presentations introduced in this chapter
highlighted moments of experiential significance and existential insight in the
lives of the pathographers.
We read for a variety of reasons – for information, inspiration, insight.
Reading narratives of illness attentively, expectantly, and reflectively can
heighten our powers of perception, deepen our self-knowledge, and thicken
our understanding of what it’s like to suffer through an illness or cope with
an injury, not abstractly or in the aggregate, but experientially and in
particular – all prerequisites for humanistic clinical care.54

Summation
This chapter explored how we narrate our experiences of illness. Beginning
with a discussion of how narrative shapes our experience of brute fact into
intelligibility and meaningfulness, it examined four narratives of illness:
Oliver Sacks’s A Leg to Stand On, William Styron’s Darkness Visible, Lucy
Grealy’s Autobiography of a Face, and Aaron Alterra’s The Caregiver. Then,
with a focus on the relationship between narrative interpretation and our
encounters with illness, it considered how reading narratives of illness
attentively, expectantly, and reflectively can heighten our powers of
perception, deepen our self-knowledge, and thicken our understanding of
what it’s like to suffer through an illness or cope with an injury. Overall, it
emphasized that the meaning of illness is created through stories, and that
reading these stories can help us to become more sensitive and humane
caregivers.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. What is it about illness that prompts the impulse for reflection?
2. In Darkness Visible, what does Styron believe causes his depression?
What, in his opinion, caused its remission?
3. What are some potential benefits of writing about illness?
4. How, and in what ways, does narrative have the potential to heal?

Suggested Writing Exercise

Susan Sontag writes, “Illness is the night-side of life, a more onerous
citizenship. Everyone who is born holds dual citizenship, in the kingdom of
the well and in the kingdom of the sick. Although we all prefer to use only
the good passport, sooner or later each of us is obliged, at least for a spell, to
identify ourselves as citizens of that other place.” Responding to this
quotation, write, for about twenty minutes, on your own experience with
illness or that of someone close to you. You may write in any form that suits
your purposes – an essay, a letter, a first-person account, etc. Whatever your
approach, try be specific about your thoughts, emotions, and responses to
your illness.
Suggested Viewing
Amour (2012)
Awakenings (1990)
Dialogues with Madwomen (1993)
The Diving Bell and the Butterfly (1997)
The Doctor (1991)
Out of the Shadow (2006)
Waltz with Bashir (2008)

Further Reading
Cortney Davis, I Knew a Woman: Four Women Patients and Their
Female Caregiver
Kay Jamison, An Unquiet Mind: A Memoir of Moods and Madness
Audre Lorde, The Cancer Journals
Nancy Mairs, Carnal Acts
Jay Neugeboren, Imagining Robert: My Brother, Madness, and Survival,
A Memoir
Stephen S. Rosenfeld, The Time of Their Dying

Advanced Reading
Howard Brody, Stories of Sickness
Rita Charon, Narrative Medicine: Honoring the Stories of Illness
Arthur Frank, The Wounded Storyteller
Anne Hawkins, Reconstructing Illness: Studies in Pathography
Ruth Nadelhaft and Victoria Bonnebaker, eds., Imagine What It’s Like:
A Literature and Medicine Anthology
Danielle Ofri, ed., The Best of the Bellevue Literary Review

Journals
Journal of Literary and Cultural Disability Studies
Literature and Medicine Narrative
Organizations and Groups
The International Society for the Study of Narrative
http://narrative.georgetown.edu/
Program in Narrative Medicine at Columbia University Medical Center
http://www.narrativemedicine.org/
 8 Aging in Film
Age has long been Hollywood’s nightmare.1
– Sally Chivers

Abstract
This chapter explores portraits of aging and old age in film.
Beginning with a discussion of early Hollywood’s cult of youth, it
examines the slow emergence of aging characters in the 1950s and
60s; the themes of intergeneration and regeneration that frequently
drove the plots of films depicting old age in the 70s and 80s; and the
variable and complex images of aging presented in more recent age-
related films. Then, with a focus on issues such as late-life sexuality
and the trope of the “aging cowboy,” it considers some of the ways
that contemporary film has challenged negative stereotypes and
images of old age.

Introduction
In the last quarter of the twentieth century, western societies entered an
unprecedented era of mass longevity and aging. Most people could expect to
live into their seventies in reasonably good health, while those eighty-five
and older became the fastest-growing age group in the population. Yet as we
have seen in Chapter 5, “The Health of Populations,” the dark side of this
triumph was an epidemiological transition in which chronic disease replaced
infectious disease as the primary cause of mortality. Mass longevity came
with a price tag: many older people now experience periods of disability,
frailty, dementia, pain, and may suffer a prolonged death in intensive care
units. In addition, western (and especially American) culture remains plagued
by ageism – a pattern of prejudice and discrimination toward older people
and old age, analogous to sexism and racism. Ageism and hostility toward the
aging process are clearly reflected in the contemporary medical and popular
ideal of “anti-aging” – the notion that one can grow old without aging.
Despite our cultural illiteracy about how to grow old, the modernization of
aging has generated a host of existential and moral questions that are largely
suppressed in popular culture: Is there an intrinsic purpose to growing old? Is
there anything really important to be done after children are raised, jobs left,
careers complete? What are the avenues of spiritual growth in later life? What
are the roles and responsibilities of older people? Who should care for old
people who are frail and sick? Is wisdom an illusion or an accomplishment of
those who pursue it? Is there such a thing as a “good old age?”2
Film, this chapter suggests, offers a valuable point of departure for
exploring these and other age-related questions in popular culture. Until
recently, the study of aging in film – like the study of aging in general – was
largely neglected.3 But as film scholars look back over the last century, they
are identifying a variety of themes and characters. In the first half of the
twentieth century, Hollywood rarely featured older characters; when it did,
they were marginal, stereotyped, and often pathologized. Beginning in the
1950s, a few classic films featured older protagonists who challenged the
limited portraits of the twenties and thirties. In the 1980s, men and women in
their sixties or older appeared in cinema in closer proportion to their presence
in the population. By the turn of the twenty-first century, a profusion of age-
focused plots and characters came onto the scene, often featuring older actors
who were familiar to audiences because of their youthful fame.
We begin with the premise that cinematic representations of aging both
reflect and challenge prevailing cultural attitudes – in particular, ageism and
fears of growing old.4 The films discussed here contain positive as well as
negative stereotypes of older people, tending to focus on: (1) old age as
pathology, (2) intergeneration and regeneration, (3) caregiving, (4) sexuality,
and (5) masculinity. Finally, we identify individuated older characters who
transcend traditional cultural images and categories of aging. We hope that
critically engaging these cinematic images and themes will encourage readers
to challenge prevailing attitudes, to learn from and empathize with older
characters, and to discover alternative perspectives on old age.

Pathologizing Age: Early Hollywood’s Cult of

Youth
In the opinion of film scholar Sally Chivers, “Age has long been
Hollywood’s nightmare.”5 The “nightmare” of aging in early cinema took
root in the 1910s and 1920s, when the birth of Hollywood coincided with a
gradual, yet fundamental shift in American attitudes toward aging.6 With
increasing industrialization and a consumer culture that advertised diet
products, exercise machines, and cosmetics, a pathologized conception of
aging gained prominence from the late nineteenth century into the turn of the
twentieth. Between 1909 and 1935, social reformers, academics, and
physicians often stereotyped old people as sick, poor, and unable to support
themselves.7 Old age and its many negative associations – ugliness, poor
health, decay, dependence – became a stage of life to be avoided or
segregated.
By 1920, Hollywood had become the center of the cinematic universe and
epitomized the quest for youthfulness that characterized much of modern
American culture. As Heather Addison puts it, “Hollywood and the Industrial
Age became close partners in the creation of a youth-oriented consumer
culture. Hollywood, with its spectacular moving images of elegant bodies,
romantic interludes, and extravagant living standards ... promot[ed] the new
standards of behavior, appearance, and lifestyle to which the public was to
aspire.”8 Young Hollywood stars – especially those whose lives had been
tragically cut short, like Jean Harlow, James Dean, or Marilyn Monroe –
were immortalized as unchanging models of youth, beauty, and permanence.9
Looking mainly for young men and “girls” to perform, the Hollywood system
equated vitality with youth. In these early decades of the twentieth century,
filmmakers rarely even allowed an older person onto screen. When they did,
the treatment of aging was belittling and marginalizing; older actors were
used as comic bait or stock characters.10

The Emergence of Aging Characters in the 1950s

and 1960s
By the mid-twentieth century, gains in life expectancy and an emerging
academic study of old age known as gerontology, provided fertile ground for
films to explore the lives of older protagonists. During the 1950s, a number
of older actors and age-related issues found their way onto the silver screen.
It is perhaps not surprising that male filmmakers began to imagine new, more
interesting roles for older men. Japanese filmmaker Akira Kurosawa’s Ikiru
(1952), for example, tells the story of a retired city clerk who, after
discovering that he has terminal cancer, devotes his remaining days to an act
of benevolence. After reflecting on the many lost opportunities to be close to
his family, he devotes his time to cleaning and completing a city park. In the
final scene, Watanabe sits on a swing gazing through snowflakes on the
completed playground, at peace with himself and the world.
Another classic film of old age and generational relations is Swedish
filmmaker Ingmar Bergman’s Wild Strawberries (1957). The plot follows
Isak Borg, a lonely retired physician who is driving with his daughter-in-law
Marianne to receive an honorary degree in Lund, Sweden. As both Robert
Butler (1927–2010) and Erik Erikson (1902–1994) have pointed out, Borg’s
trip is the occasion of a life review that contains dreams and memories of
failure, guilt, arguments with his elderly mother, and fear of his mortality.11
Borg’s emotional crisis reaches its peak when he and Marianne stop at the
family’s summer home, where he spent the first twenty years of his life. He
has a vision of his first love, Sara, picking wild strawberries, flirting with his
older brother, and reflecting on her choice of Borg as her lover. Throughout
these moments of recollection and reminiscence, Borg is reminded of his
limitations, his lack of intimacy with others, and his feelings of inadequacy.
Finally, he confesses to Marianne, “I’m dead although I’m alive.” When he
reaches Lund, however, Borg is surrounded by young people, reunited with
his son, and lauded during the award ceremony. The film ends with another
waking dream as Borg revisits his youth, watches his parents, and finds
satisfaction that otherwise had been denied him throughout his life.
Figure 8. Wild Strawberries (single film frame), 1957, Director: Ingmar Bergman.
Wild Strawberries © 1957 AB Svensk Filmindustri, Still Photographer: Louis Huch.

This chapter discusses the aging and identity of Dr. Borg in Ingmar Bergman’s Wild
Strawberries (1957). How much of Dr. Borg’s emotional and psychological crisis is
captured in the single frame that depicts Dr. Borg and his daughter-in-law Marianne
driving to Lund? Where are they looking? What expressions are on their faces? What
might these features of the image reveal about their relationship?
The composition of this frame also captures a powerful theme of the film – the
relationship of old age to youth – by closely confining an old man and a young woman
in the interior of a car. Simply putting a frame around two figures or objects gives them
a rough equality, but compositional elements create important distinctions.
In this case, the young woman, Marianne, dominates the frame, filling the left half.
She sits upright, her head reaches to the top of the frame, her shoulder overlaps the left
edge, and the bottom of the frame runs just below her shoulders. She wears a white long-
sleeve blouse under a sleeveless dress with a V-neck. The black dress and the white
blouse are sharply focused and contrast dramatically. She gazes down and to her right,
outside the frame and away from her companion, as if lost in thought.
The angle of the camera puts Borg, the old man, farther back in the frame, making
him appear smaller and slightly out of focus. His position is further diminished by
posture and tonality. He slumps in the seat and his rumpled clothes are muted grays.
Only the white collar of his shirt mirrors Marianne’s costume. In contrast to Marianne’s
 withdrawn gaze, Borg gazes directly and intently out the windshield.
Bergman’s compositional choices raise a number of questions. Youth dominates old
age and is more sharply focused, for youth life is composed of blacks and whites rather
than grays. But can youth’s gaze find an object outside itself? Old age moves a person
into the background of life, with few sharp contrasts and lack of focus. However, old age
can reflect on life as lived. Looking at the film frame again, could it be that Marianne is
a projection of Borg’s gaze, a projection of his youth as much as an actual person?

Thanks to Kurosawa’s and Bergman’s influence, American cinema also

began to feature older male characters. 12 Angry Men (1957) features an
older character (played by Joseph Sweeney) who plays a pivotal role in the
judicial trial of an accused murderer. Convened for the sentencing a
youngster from a crime-filled neighborhood accused of murdering his father,
the jury is comprised of conventional, middle-class Americans: a bank clerk,
a small-time businessman, a garage owner, an architect, a construction
worker, a copywriter, a stock exchange broker, and a baseball coach. When
the group quickly agrees to convict the defendant, only one member of the
jury – the old man – refuses to make a judgment so rashly. Himself a social
outsider, the old man explains that he changes his vote out of principle,
because “it is not easy to stand the ridicule of the others.” Breaking out of the
conformism that governs the group, he leads them to question their verdict
and eventually acquit the defendant.
While Ikiru, Wild Strawberries, and 12 Angry Men feature nuanced and
sympathetic portraits of male protagonists, older women did not fare so well.
In the 1960s, the beautiful, young actresses of the 1930s had been forgotten,
relegated to marginal roles, or – in Bette Davis’s and Joan Crawford’s cases –
featured as disabled, repulsive figures. Davis was regarded as one of
Hollywood’s finest actresses in the thirties, appearing on both Broadway and
Academy-award-winning films. Crawford was also a famous flapper from the
twenties. By the 1960s, however, both actresses were considered over-the-hill
at fifty years old.
Whatever Happened to Baby Jane (1962) flashes back to the early success
of the vaudevillian child star Baby Jane and her older sister Blanche, also a
famous actress. In the film’s present, Blanche (Joan Crawford) and Jane
(Bette Davis) are retired from their careers and live together. One night after
a party, the two sisters get into a terrible automobile accident after a party.
Blanche, crippled from the accident, is usually holed up in her bedroom
watching old movies on television. Jane is a shadow of her former self, still
drinking and wearing caked-on makeup while she insistently talks to her toy
doll. Blanche’s wheelchair and Jane’s outlandish behavior subtly link aging
with both physical and mental disability, suggesting that older women – and
by implication older people – are obsolete and ineffectual. While Crawford
and Davis revitalized their careers at an age thought too old for starring
female actresses, their fame came at a price. By playing has-been stars who
gazed longingly back at a time when they were young and beautiful, their
roles mirrored the declining trend of their own careers.
Whatever Happened to Baby Jane suggests that, disabled or not, older
women are physically and mentally less capable than younger characters or
their younger selves.12 Even into the twenty-first century, older women on
the silver screen appear less active and attractive than old men, and old men
are generally paired in romances with much younger women. Except for
widely recognized stars like Maggie Smith, Judy Dench, or Shirley
MacLaine, this bias against aging women in Hollywood culture remains
pronounced. Increasingly unable to land regular work, even a star like
Melanie Griffith has lamented her marginal role in Hollywood: “I wish that I
could make more movies. The fact that I have some lines on my face, that’s
it. It’s not because I lost my talent or I became deformed. It’s only because
I’m older.”13

Themes of Intergeneration and Regeneration

After the 1970s, Hollywood films with strong older characters grew more
frequent. Many of their plots revolved around the themes of intergeneration
and regeneration.14 Intergeneration refers to meaningful interactions
between the old and the young – family bonds, grandparenting, friendship,
and mentoring. The old are usually depicted as wise, nurturing mentors, and
both the young and the old change dramatically based on the intensity and
honesty of their interactions. The theme of regeneration, which is closely
linked to intergeneration, features older characters who find closure, who
resolve significant conflicts, and restore or create some kind of emotional or
spiritual wholeness in their lives.15 Regeneration often concerns one’s
relation to place, which grounds the old person in the tradition, values, and
the reassurance of a stable community and home. As older characters feel the
physical constraints of their changing bodies, they often undertake a “life
review” that involves travel: a trip to or away from home, the return to one’s
roots or to see one’s friends.
Harry and Tonto (1972), for example, follows Harry Coombs, a widower
who lives in an Upper West Side apartment in New York City. When the
building is condemned and Harry is forced out of his apartment, he initially
stays with his son’s family in Long Island. Soon, however, Harry begins a
compelling cross-country trip (with his cat “Tonto” along for the ride) that
leads to a series of intergenerational adventures. Always gregarious and
curious, Harry brings his charm to every conversation. As he travels across
the country visiting his children, he is reminded of their significant personal
problems, which he has never been able to solve. But Harry is a good father
to them nevertheless, remaining supportive and available. Harry’s journey
ends on the West Coast when Tonto dies, symbolizing the end of one stage of
life and the beginning of another. Harry begins a new life with friends and his
son.
In The Trip to Bountiful (1985), old Mrs. Carrie Watts also embarks on an
elder journey that provides closure and a deepened perspective on her family
history. Trapped in a small apartment in 1940s Houston, Mrs. Watts sneaks
away from her son and her hostile daughter-in-law to return to Bountiful, the
small Texas town in which she grew up. Cashing in her Social Security check
for a bus ticket, Mrs. Watts undertakes a desperate journey to return to her
roots.16 Along the way, she meets two guides: a young woman who reminds
Carrie of her own youthful passions and a kind, middle-aged sheriff who
drives her to Bountiful when she is stranded in a nearby town. Although the
town of Bountiful no longer exists, Mrs. Watts, in a struggle similar to those
of Borg and Harry, finds resolution in her journey. She visits her old, long-
abandoned house, muses on the fleeting nature of all life, and achieves new
peace with her son and daughter-in-law, who arrive to bring her back to
Houston.

Case Study: The Trip to Bountiful

 In this scene, old Mrs. Watts sits on the front porch in Bountiful with her son, Ludie. As
mother and son look outward to the fields and the forest, Carrie reflects on her life and
the life that she left behind.

“MRS. WATTS [CRYING]: What has happened to us? How did we come to this?
LUDIE: I don’t know, Mama.
MRS. WATTS: Should have stayed and bought the land, it would be better than this!
LUDIE: Yes’m.
MRS. WATTS: Pretty soon I’ll just be gone. Twenty years, ten ... this house ... me ...
you.
LUDIE: I know, Mama.
MRS. WATTS: But rivers will still be here. The fields. The trees. And the smell of the
gulf. I always got my strength from that. Not from houses. Not from people. So
quiet ... so eternally quiet. I’ve forgotten the peace. The quiet. Do you remember
how my papa always had that field over there planted in cotton?
LUDIE: Yes, Mama.
MRS. WATTS: You see, it’s all woods now. But I expect someday people will come
and cut down the trees, plant the cotton, and maybe even wear out the land again.
And then their children will sell it and move to the cities. And then trees will come
up again.
LUDIE. I expect so, Mama.”
MRS. WATTS: And we’re part of all that. We’ve left it, but we can never lose what it’s
given us.
LUDIE: I expect ... I expect so, Mama.

1. Why does Mrs. Watts want so desperately to return to Bountiful?

2. Why are the woods and the cotton fields important to her? How does she
understand them in relation to her family history?
3. What do Ludie’s responses reveal about his relationship to his mother?
4. How does Mrs. Watts reconcile herself to returning to Houston, where she will
live in the same situation she fled from?

Films from the 1980s do not attempt to tackle the psychological and social
struggles of old age, but rather shield viewers from its harsh and ugly side.
The film On Golden Pond (1981), for example, features seventy-eight-year-
old Henry Fonda as Norman, a retired professor who has grown frustrated
with the process of aging. “Do you think it’s funny being old? My whole
damn body is falling apart!” he complains to his wife Ethel (played by
Katharine Hepburn). At the beginning of the film, Norman loses his way in
the woods, facing temporary amnesia and a sense of horror that he has lost
his way. At their cabin in Maine, the couple is visited by their divorced
daughter, her boyfriend, and his son. What follows is a serene, almost
reverent film in which reconciliation between generations softens the terrors
of memory loss and weakness. It should be noted that Harry and Norman are
idealized portraits of old age. For the most part their experiences end well,
and their interactions with previous generations, from their children to their
grandchildren, are positive and fulfilling.17 They are also more or less healthy
and enjoy financial independence. Old age, consequently, appears as a time
of freedom, creativity, and a sense of fulfillment, which counters the negative
stereotypes of aging in early Hollywood.

Vulnerability, Disease, and Caregiving

The twenty-first century brought with it a panoply of films that featured
aging as a central concern. Actors who enjoyed fame in their youth – Jack
Nicholson, Meryl Streep, Robert Redford, Clint Eastwood, Sylvester
Stallone, Jack Lemmon, Judy Dench, Julie Christie, and many others – are
featured in roles that explore the process of growing old. While many of
these films do little to challenge common attitudes toward growing old –
aging is still seen as a state to be avoided, or at least delayed – they do offer
variable and complex images of aging, including nuanced treatments of
caregiving, terminal disease, sexuality, and intergenerational relationships.
Dad (1989), a story about intergenerational relations and caregiving,
revolves around three generations of men: the grandfather Jake (played by
Jack Lemmon), his son John (played by Ted Danson), and his grandson Billy
(played by Ethan Hawke). When Jake goes to the hospital for diagnosis and
eventual surgery, his physician, Dr. Santana, is faced with the dilemma of
telling Jake that he has bladder cancer or honoring his family’s request to
keep the matter secret. “Whatever you do,” John asks, “don’t mention cancer
to my father. He’s terribly anxious and frightened by that word.” To John’s
dismay, Dr. Santana, following his professional obligation, decides to tell
Jake the truth, sending Jake into a state of painful shock, confusion, and
withdrawal. The situation prompts many questions about the roles and
responsibilities of physicians, patients, and other caregivers. What rights do
family members have to conceal information about a patient’s illness, even if
that concealment is in the patient’s best interest? Who within a family has the
right to know about the health condition of another? Who has the right to
make decisions based on that information?18 In a moving scene, John wraps
Jake up in a bed sheet and carries him out of the hospital, vowing to care for
Jake himself rather than consign him to a hospital bed or a nursing home.
Iris (2001) is a biopic about the philosopher Iris Murdoch (played by Judy
Dench), who suffers from Alzheimer’s disease, and her husband and
caregiver, writer John Bayley. We see Iris through John’s feeling and
memories, which oscillate between his youth, when the couple met and fell in
love at Oxford, and the late-life plot in which John decides whether to
institutionalize Iris or care for her at home.19 As a caregiver, John must cope
with his wife’s incontinence, her wandering, her repetitive behavior, and her
vacant stares. In an especially difficult moment, John lashes out at her: “I
hate you! All your friends are finished with you now! I’ve got you now!
Nobody else has you anymore! I’ve got you now, and I don’t want you!”
How does a caregiver deal with his or her own frustration or anger? When do
the responsibilities of a caregiver become more than he or she can bear? John
grapples with these questions as Iris’s condition worsens, culminating when
she flees from their home in a fit of panic and confusion. John decides to call
the police and place her in a nursing home, where she soon dies.
In Away from Her (2003), Fiona and her husband, Grant Anderson, have
enjoyed a long and fulfilling marriage. After a series of memory lapses and
mishaps indicates that Fiona is becoming a risk to herself, she enters a long-
term care facility. After a thirty-day waiting period, Grant goes to visit her
only to find that she has forgotten him and turned her affections to Aubrey, a
mute man in a wheelchair. She treats Grant with detached civility, as if he
were a determined suitor – “my, but you’re persistent,” she remarks when he
brings flowers – rather than her husband of more than forty years. Grant
responds with both anger and guilt. We learn that many years ago, when he
was a university professor, Grant cheated on Fiona with one of his students.
Is her sudden affinity with Aubrey a manifestation of her disease, or a
backhanded form of punishment for Grant’s infidelity? When Aubrey leaves
the home because of financial troubles, Grant visits Aubrey’s wife in an
effort to allow Fiona to see Aubrey again, preferring to see his wife happy
with another man rather than miserable by herself. In a final scene, Fiona
briefly remembers Grant and the long life that they shared together. The film
ends as they embrace.
Amour (2012), Michael Henke’s highly acclaimed French-language film,
offers a harrowing portrait of late-life dementia that is both unflinching and
compassionate. Georges and Anne, both retired piano players in their
eighties, are an accomplished, loving, and active Parisian couple whose lives
revolve around music and each other. They are quirky, willful, and fiercely
independent people, ill-suited to accommodating the ravages of aging. A
series of strokes leaves Anne demented. Georges watches the person whom
he loves vanish before his eyes. Is their love also beginning to disappear?
Having promised Anne that he will not take her back to the hospital, Georges
becomes his wife’s hospice caregiver. He sings to her. At times, when she is
fiercely defiant at dinner, Georges must pry open her mouth in order to feed
her. Despite the challenges, Georges remains devoted in his love for Anne,
writing letters that she will never be able to read and recounting stories of
their courtship. One day, as he is telling Anne a story, Georges picks up a
pillow and smothers her. Viewers are left to ponder: is this mercy killing a
final act of love and promise keeping? Is it murder? Or is it a terribly
misguided act of desperation by a heartbroken old man?
The Iron Lady (2011) explores the experience of aging in the life of one of
England’s most powerful and polarizing recent figures, Margaret Thatcher.
The film’s portrait of Thatcher (played by Meryl Streep) is intimate and
personal rather than purely political. We first see her frail and confused, as
she slips out of her apartment to buy a carton of milk in a small, cluttered
convenience store. A series of flashbacks explores her life as a teenager in
Grantham, England; her entry into politics; her first meeting with her future
husband, the successful businessman Sir Denis Thatcher; and the years of her
political ascendancy as Britain’s Conservative Party leader and prime
minister, when she reigned for fifteen years as “the Iron Lady.” All of these
images contrast sharply with the film’s present day scenes of Thatcher’s
growing dementia, her struggle with feelings of impotence and isolation, and
her increasing reliance on her daughter.
Dad, Iris, The Iron Lady, and Amour contain a complexity and an
existential realism that, for the most part, are absent in the films discussed in
previous sections. While these films also focus on families and the crises of
caregiving, they are less idyllic and more somber in tone. Instead of ending
with the feelings of serenity or reconciliation that Norman finds in On
Golden Pond, Dad ends with Jack’s relapse and death. Rather than growing
closer with her son, as Old Mrs. Watts does in The Trip to Bountiful, in The
Iron Lady Margaret Thatcher’s relationship with her daughter, Carol, remains
strained.

Aging Sexualities in Contemporary Film

Recent films have also begun to move beyond the cultural taboo imposed on
sex in old age, but they often reinforce popular views of its repulsiveness.
About Schmidt (2003), for example, offers a sad revision of the elder journey
and a glimpse into late-life sexuality. We quickly learn that Warren
Schmidt’s problems are not with physical disease – he is a healthy, if flabby,
older man – but with emotional and existential confusion. Schmidt (played by
Jack Nicholson) is unsure whether he has lived a meaningful life. At his
retirement party, Warren listens stoically to a colleague who praises his
unique life and contributions. But Schmidt knows that, in truth, his life is not
the one just described. Upon retiring, he is effortlessly replaced by a younger
man. His marriage is joyless, empty, and marked by infidelity: his wife Helen
has actually cheated with the very man who delivers Schmidt’s retirement
speech! In an effort to find meaning in his life, Schmidt “adopts” a Tanzanian
orphan named Ndugu and writes him letters.
Helen abruptly dies, leaving Schmidt alone. Without a job, spouse, family,
or community, he sets out on the open road in his Winnebago. While the
conditions of his journey are not unlike Harry’s in Harry and Tonto,
Schmidt’s experiences are marked by loneliness and failure. His childhood
home has been demolished and replaced by an auto repair shop. At an RV
campground, he makes a failed pass at an acquaintance’s young wife and
flees the scene. The final destination of his trip, his daughter’s wedding, is
filled with riotous scenes of drunken in-laws and unsuccessful attempts to
talk his daughter out her engagement. At the reception dinner, Schmidt
delivers the father-of-the-bride speech. It is a moving, eloquent speech given
by a man who doesn’t believe a word of what he is saying. A deep sense of
resignation pervades the film. In the final scene, however, Schmidt receives a
drawing from Ndugu (who cannot read or write) of a tall stick person holding
a smaller stick person’s hand under a blazing sun. He sees in that drawing the
image of a better life of human connection and experiences a rare outpouring
of emotion. Rather than concluding with a sense of reconciliation or
regeneration, the film ends on a note of poignant ambiguity.
About Schmidt is also noteworthy for its portrait of late-life sexuality.
Perhaps the most well-known scene (because it flaunts taboos and appeared
in promotional trailers) is Schmidt’s hot-tub encounter with the licentious
Roberta, played by Kathy Bates. The scene occurs when Schmidt wakes from
an uncomfortable night with a stiff neck and slips into the hot tub for some
relief. Roberta’s frank sexual advances in the hot tub, which are accentuated
by her brash manner and corporeality, prompt Schmidt to flee the scene. The
unapologetic presentation of aging female sexuality – exemplified by
Roberta’s flabby female flesh – is too much for Schmidt, and perhaps the
viewer, to bear. This exchange between Nicholson and Bates is typical in
Hollywood cinema. In Iris and elsewhere, films often juxtapose youthful
scenes of lovemaking with current scenes of decline and disability,
suggesting that older people’s bodies are repulsive or incapable of desire and
sexual activity.20
Beginners (2011) stands as an exception to Hollywood’s reluctance to
explore passion in late-life sexuality. The film follows the intergenerational
relationship between Oliver, a thirty-eight-year-old graphic designer, and his
father Hal, a seventy-eight-year-old retired art historian. After his wife’s
death, Hal comes out of the closet after forty-four years of marriage, a
revelation that discomfits Oliver even as he tries to accept his father’s new
lifestyle. Hal decides to live openly as a gay man just as he learns that he is
dying of cancer. He is thus faced with another dilemma: should he “come out
of the closet” and tell others about his disease? Hal decides to come out as
gay but to keep the news of his cancer a secret from everyone except Oliver.
The news of Hal’s cancer does not stop him from enjoying life and searching
for a new partner, as he details in a candid personal ad:

I’m looking for sex, with the hope it turns into friendship or a
relationship, but I don’t insist on monogamy. I’m an old senior [gay]
guy, 78, but I’m attractive and horny. I’m an art historian, now retired.
In addition to art, I like houses, gardens, parties, and walking with my
Jack Russell. I’m 5’11, 160 pounds. I’m trim, gray hair, blue eyes, hairy
chest.... If you are willing to try an older guy, let’s meet and see what
happens.

Even though he is pushing eighty with only a few years to live, Hal continues
looking for love – and eventually finds it with a man nearly half his age. Like
Wild Strawberries, Harry and Tonto, and The Trip to Bountiful, Beginners
emphasizes that the lessons learned in old age are relevant to subsequent
generations. When Hal’s son Oliver reflects upon his father’s life and its
significance for his relationship with his girlfriend Anna, he learns that the
journey toward love is a difficult one that does not end with marriage, old
age, or even the onset of terminal disease. Oliver and Anna still have much to
learn. They, like Hal, are “beginners.”

“Yes We Still Can”: The Aging Cowboy in

American Cinema
In the early twenty-first century, as some of American cinema’s most beloved
male actors grew older, Hollywood gave birth to a new kind of hero, an aging
hero whose waning physicality and strength become the stimulus for the
reassertion of masculinity in later life. A number of films, from Harrison
Ford’s Indiana Jones and the Kingdom of the Crystal Skull (2008) to
Sylvester Stallone’s The Expendables (2010), imply that in spite of real signs
of physical decline, aging men needn’t relinquish any of their power or their
dominance. This kind of exaggerated and compensatory masculinity is
especially prominent within the genre of the western. Beyond the rolling
plains, bawdy saloons, hostile Indians, and other iconic images of the genre,
perhaps the most distinctive feature of the classic western film is the model of
masculinity that lies at its core.21 As Sally Chivers puts it, “enormous effort
is made to shore up each male star’s increasingly fragile sense of virility at
the expense of others, usually women dismissively treated as potential or
rejected sexual objects and racialized men easily killed off.”22 In many
contemporary westerns, as Chivers notes, the role of the older male figure is
recast from a man whose masculinity is thought to be fading to a man whose
masculinity is exaggerated and compensatory.
Unforgiven (1992), which stars Clint Eastwood in his early sixties, presents
a model of masculinity in which aging physicality is offset by means of
“astonishing yet apparently justified violence.”23 Eastwood’s character
William Munny is a legendary, murderous villain who has become a family
man and mended his ways thanks to his loving wife who is recently deceased.
As a lonely pig farmer mired in poverty with his two children, Munny’s body
is beginning to fail him. He is first seen rolling around in the mud chasing his
pigs, consistently unable to catch them. Munny fails to hit the mark a single
time during target practice; he has even more trouble mounting his horse.24
At the start, Munny seems resigned to his fate as an ex-outlaw, widower,
father of two, pigpen owner, and over-the-hill cowboy. Soon enough,
however, Munny is drawn against his will to avenge his friend Ned Logan
(played by Morgan Freedman) who has been brutally whipped to death by the
sheriff, Little Bill. As the reluctant, wifeless hero thrust back into the fray,
Munny embarks on a flurry of retributive violent acts that reinforce his
masculinity. The violence culminates in a gripping climax in which Munny
guns down the inhabitants of the local saloon, including the corrupt sheriff
Little Bill.
No Country for Old Men (2007) features an alternative conception of
masculinity in old age. In this western, Sheriff Ed Tom Bell (played by
Tommy Lee Jones) represents a unique character: an aging, ineffectual
cowboy whose renunciation of violence leaves him uncertain about his
identity as a man. Bell is the kind of officer who helps people coax their cats
down from treetops and cares about his horses in a personal way. During his
thirty-year tenure as the lawman of Terrell County, Texas, he’s never had to
kill anyone and has never failed to solve a murder case. The plot of No
Country for Old Men is driven by two other characters, Anton Chigurh and
Llewellyn Moss. Moss is a young welder who, on a hunting trip in the desert,
stumbles upon a botched drug deal and a briefcase filled with just over two
million dollars. Chigurh is a mysterious psychopath who has been hired to
retrieve the money at all costs. Within a couple of weeks, there are eight
drug-related murders and Bell is helplessly trailing the action in each of them.
By the end of the film, Bell is overwhelmed. Chigurh has escaped with the
money. Moss and his wife are dead. The peace in Terrell County has been
shattered. Bitter, defeated, and bewildered, Bell retires from his job as a
sheriff, no longer certain of who he is or where he fits in the world.
What is significant about Bell is how he differs from William Munny. In
No Country for Old Men, there are no rejected women or racialized men who
are sacrificed in order to reaffirm Bell’s status as a patriarchal, strong sexy
white man. Bell has lived in a long (if imperfect) marriage with his wife,
Loretta, and he goes home to an uncertain renewal. Unlike Munny, who is
motivated by revenge, Bell is developed through renunciation of violence.
Bell makes a critical decision: he will not “put his soul at hazard” by
pursuing Chigurh, who is a virtual killing machine.25 Instead, he retires from
his post as sheriff and admits that he no longer has easy answers or even
confidence in his own views. By refusing to confront Chigurh, Bell stands
apart from the violence characterized by typical heroes of the American
western. In departing from traditional scripts of youthful aging, Bell takes an
important step toward personal authenticity and intimacy, thereby offering an
alternative, if uncertain, model of aging masculinity.

Conclusion
As we have seen, cinema over the last century reflects the difficulty of
making sense of aging in modern culture. From the inception of Hollywood
to contemporary film, old people on the silver screen have largely been either
absent or viewed through the distorting lens of ageism. While some
contemporary films defy negative stereotypes and images of old age, traces
of ageism and fears of old age are alive and well. Although the plots have
changed, the idea that age is physically demeaning has not.26 Women, in
particular, are cinematically represented as devalued, disabled, and
undesirable. At the same time, the history of aging in film reveals a halting
and uneven movement from ageist images and representations to portraits of
heightened sensitivity and complexity. Despite the distorting lenses of ageism
and sexism, some films do indicate paths to the realization of moral and
spiritual possibilities in later life.

Summation
This chapter explored portraits of old age in film. Beginning with a
discussion of early Hollywood’s cult of youth, it examined the slow
emergence of aging characters in the 1950s and 60s; the themes of
intergeneration and regeneration that frequently drove the plots of films
depicting old age in the 70s and 80s; and the variable and complex images of
aging presented in more recent age-related films. Then, with a focus on issues
such as late-life sexuality and the trope of the “aging cowboy,” it considered
some of the ways that contemporary film has challenged negative stereotypes
and images of old age. Overall, this chapter emphasized that most films
present old age as physically and emotionally demeaning, and that a greater
awareness of ageism can help us to move toward more nuanced and complex
conceptions of old age.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Think of the last older character you saw in a movie. How was he or
she portrayed? How did you feel about him or her?
2. How did early Hollywood culture contribute to the “pathologizing” of
age?
3. Distinguish between male and female representations of aging on the
screen. How does the portrait of aging change across gender lines?
4. What’s your favorite movie about an older person? What is it that you
like about him or her?

Writing Exercise
Watch the movie About Schmidt. Notice how the character struggles and how
you feel about him. Write an additional scene in which Schmidt responds to
Ndugu. What would he say in this final letter? Would he use words or images
to express himself? Write for five to ten minutes.

Suggested Viewing
Aging in America (2002)
All is Lost (2013)
The Expendables (2010)
Last Vegas (2013)
Red (2010)
The Wrestler (2008)

Advanced Reading
 Robert Butler, “The Life Review: An Interpretation of Reminiscence in
the Aged.” Psychiatry 26 (1963): 65–76.
Sally Chivers, The Silvering Screen: Old Age and Disability in Cinema
Thomas R. Cole, The Journey of Life: A Cultural History of Aging in
America
Robert Yahnke, “The Experience of Aging in Feature-Length Films: A
Selected and Annotated Filmography,” in A Guide to Humanistic Studies
in Aging

Websites
Literature, Arts, and Medicine Database
http://litmed.med.nyu.edu/ European Network of Aging Studies (ENAS)
“http://www.agingstudies.eu/”
www.agingstudies.eu/“https://www.google.com/url?
sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&sqi=2&ved=0CB0QFjAA
XrI27OizAFzeuuOgIpoO3Tw3Q&sig2=Hh7ayQ1_r1rOlHkQgnf6LQ” North
American Network in Aging Studies (NANAS)
“http://www.agingstudies.org”www.agingstudies.org

Journals
Age, Culture, Humanities
The Gerontologist (see, especially, the section on “Film and Digital
Media”)
Journal of Aging Studies

Organizations and Groups

Gerontological Society of America
http://www.geron.org/
 9 Medicine and Media
Although neither the medicine nor the bioethics of these TV dramas is
real, both are often so compellingly portrayed as to provide us with
extraordinary opportunities to use them to encourage more in depth
discussion, and to make bioethics itself more accessible and democratic.
– George Annas1

Abstract
This chapter explores how doctors have been depicted on American
television. Beginning with a discussion of existing scholarly
literature, it examines the origins of the doctor show formula on
programs such as Medic and Ben Casey; the shift toward shows, like
M*A*S*H, that focused on the lives and problems of physicians
rather than patients; the new emphasis on the doctor’s family life on
programs like The Cosby Show; the growing sense of disillusionment
presented on shows such as ER; and the representation of the doctor
as antihero on shows like House, M.D. Then, with a focus on The
Mindy Project, it considers some recent developments in the doctor
show formula.

Introduction
Police shows and doctor shows have been a staple of American television for
well over fifty years. It is striking that while police shows tend to focus on
the taking of life (i.e., murder) doctor shows tend to focus on procedures for
saving life (e.g., surgery). The ongoing popularity of both genres seems to
indicate that the American public never seems to grow weary of watching the
extremities of life.
This chapter introduces the reader to major themes in the history of doctor
shows. A key source for this chapter is Joseph Turow’s (1950–) Playing
Doctor.2 This book is regarded as the most substantial monograph on the
topic. The chapter also includes critical scholarship in medical humanities as
well as discussions of particular doctor shows. We begin by discussing
medical humanities literature on medicine and media.

Literature Review
Types of Literature in Medicine and Media
There are a number of types of literature in medicine and media: edited
volumes that compile scholarly perspectives, books that focus on particular
doctor shows and other topics, scholarly monographs, and journal articles.
Sampling this literature is one way to get some sense of the field.
The most significant book in the area of medicine and media in terms of
scholarly rigor as well as representativeness of major scholars doing this
work is Lester Friedman’s (1945–) Cultural Sutures.3 This edited volume is
comprised of chapters from high profile writers in medical humanities and
bioethics, including Jonathan Metzl, Arthur Caplan (1950–), Kirsten Ostherr,
Therese Jones, and Tod Chambers, and includes essays by other major
humanities scholars such as Sander Gilman (1944–). The book addresses
journalistic treatment of mental illness, managed care ads on billboards,
“medical monsters” in horror films, the depiction of empathy in doctor films,
content analyses of doctor television shows, and other topics. In terms of
being introduced to medicine and media, the actual topics that the book
covers is less important than being introduced to these authors.
Another significant volume is Leslie Reagan, Nancy Tomes, and Paula
Treichler’s (1943–) Medicine’s Moving Pictures.4 This volume’s focus, like
Friedman’s volume, is broader than television; it includes, for example,
chapters on popular films as well as health films. This book also
demonstrates a high level of scholarly rigor. Yet another significant book in
this area is Sandra Shapshay’s Bioethics at the Movies.5 This edited volume,
as the title intimates, explores bioethics issues as represented in film. It has
chapters on movies such as Gattaca, Eternal Sunshine of the Spotless Mind,
and Million Dollar Baby. This book, unlike the previous volumes, is content-
driven and is important because of its sustained focus on films that are useful
for teaching.
In addition to edited volumes, there are monographs and coauthored books
that focus on particular doctor shows; Andrew Holtz’s House, M.D. vs.
Reality,6 for example, focuses on House, and Alan Ross and Harlan Gibbs’s
The Medicine of ER7 focuses on ER. There are, too, books that explore
particular specialties (e.g., emergency medicine) in a number of doctor shows
– e.g., Jason Jacob’s Body Trauma TV.8
There are also rigorous scholarly monographs that focus on medicine and
media such as Clive Seale’s Media and Health9 and Kirsten Ostherr’s
Cinematic Prophylaxis as well as her Medical Visions.10 These scholarly
books often focus on issues of representation, discourse, and power. And yet
another kind of literature in the area involves journal articles. Some of these
articles are brief commentaries published in major medical journals,11 and
others are full-length journal articles published in bioethics journals.12 This
literature is vast; this discussion is simply meant to give readers a sense of the
kind of literature that exists in medicine and media as well as some of the key
authors.13

Sample Topics in Medicine and Media:

Representations of Disability and Pedagogical
Debates
Another way of introducing medicine and media is by exploring sample
topics; we introduce two here: representations of disability and pedagogical
debates. The first topic concerns representations of disability. In Media and
Health, Seale discusses literature from disability studies as it applies to media
with an emphasis on television. He notes that two tropes tend to appear in a
variety of forms. One set of images tends to idealize disability (e.g., when
persons with a certain disability are portrayed as “supercrips,” as when they
are shown competing in the Paralympics), and another set of images tends to
stigmatize disability (e.g., when persons with a certain disability are
portrayed as victims, as when telethons portray persons with a disability as
passive victims of charity). Seale also points out that a number of studies in
the late 1970s and the early 1980s found that persons with a disability did not
tend to appear as major characters on television shows, and that, when
persons with a disability are represented at all, they are often misrepresented.
A 1992 study, for example, found that representations of the wheelchair, in
contrast to other forms of disability, were overrepresented, and that:

Disabled people were less likely to be portrayed as having jobs, being

sexually attractive, or involved in relationships, and more likely to be
shown as loners, moody, violent or victims. They were also three times
more likely to die than non-disabled people on television.14

Seale also noted that persons with a disability were often represented as
“disabled persons,” in contrast to “persons with disability” – that is, disability
was featured as the main component of their character rather than being
incidental to it. Seale reports findings from one focus group comprised of
persons with disability: persons with disability “would like to see more
disabled actors playing as disabled people, and ... that they liked it when
disability is shown as a normal background feature of life, rather than a
character’s overriding focus.”15
The second topic that we would like to introduce concerns the pedagogical
use of doctor shows: To what extent are doctor shows useful as teaching
tools? Matthew Czarny and his colleagues report data they collected from an
online survey distributed to medical students and nursing students. The study
found that most medical students and nursing students do watch doctor
shows, and the study also reported other findings relating to ethical issues.
While the study was not designed to ascertain whether television viewing
habits actually influence the attitudes and the behaviors of medical students
and nursing students, the authors suggest that “these television programs are
of concern to the extent that they might ... influence the attitudes and
behaviors of young professionals.”16 The authors also suggest that such
viewing might be considered a part of the “informal curriculum” in that
health professional students might learn bad behavior by watching bad role
models on television. In a commentary on this article, Mark Wicclair (1944–)
suggests that these concerns are overblown because “viewers of television
programs and movies are able to recognize that the behavior of characters
who lie, cheat, abuse drugs, steal, rape, kill, and so forth is not to be emulated
in real life.”17
In contrast to being worried about the potential negative messages sent to
health professional students via television, clinical ethicist Jeffrey Spike
makes a positive case for the educational value of doctor shows.18 He notes
that while the medicine and the science may be inaccurate on these shows
they nevertheless capture ethical complexity better than the one-paragraph
cases that are so often used in medical education. Why? Television shows,
especially if they develop a character over the course of multiple episodes,
are able to portray a person’s personality and their context. Spike also notes
that there is much about communication that is nonverbal and cannot be
captured with the written word but can be captured by professional actors
who are skilled in representing such subtleties of conversation. Spike also
notes that ethical and professional issues appear in every episode of each
doctor show because drama, by necessity, entails conflict. Spike also points
out that doctor shows often explore a wide range of professionalism issues
that are usually overlooked in most bioethics courses.
Howard Trachtman provides a different view. He argues against the use of
doctor shows in medical education because (1) doctor shows need to compete
for ratings and thus tend to show extreme bioethical outliers to generate
interest; (2) television tends to “airbrush” out important details about
socioeconomic location; and (3) bioethical deliberations are often long and
drawn-out processes that require multiple meetings with family members and
hospital administrators, and these are rarely depicted on television. While
Trachtman’s criticisms are valid, it seems that they could be answered by
producing better television. Crime-related shows like The Sopranos, The
Wire, and Breaking Bad have ushered in a new era of television that takes
context and character development to a new level – perhaps the same will
happen with doctor shows.

The History of Doctor Shows: Snapshots

We now want to turn to a discussion of the history of doctor shows on
American television. During the last sixty years, many doctor shows have
been featured on American primetime television, such as Medic and The
Doctor in the 1950s; Dr. Kildare, Ben Casey, and Marcus Welby, M.D. in the
1960s; The Interns and M*A*S*H in the 1970s; The Cosby Show, Growing
Pains, and Doogie Howser, M.D. in the 1980s; Chicago Hope and Dr. Quinn,
Medicine Woman in the 1990s; and Grey’s Anatomy, Scrubs, House, M.D. in
the 2000s; and The Mindy Project in the 2010s. Of particular importance is
ER, which ran from 1994–2009, making it the longest-running doctor show.
This list, far from being exhaustive, is some of the most prominent.
While there have been many doctor shows since the 1950s, it has been
argued that these shows do not differ significantly. In a book chapter in
Medicine’s Moving Pictures, Joseph Turow and Rachel Gans-Boriskin
provide a brief history of what they call the doctor show formula.19 The basis
for their formula – and its continuities and changes over time – is derived
primarily from (1) interviews with producers, directors, writers, actors, and
others involved with the creation of doctor shows; (2) viewing and analyzing
doctor shows; and (3) engagement with scholarly literature about doctor
shows. They argue that the doctor show formula emerged in the years
following World War II when medicine was making great advances.
Medicine then seemed to be the new “frontier” and doctors were the new
“cowboys.” In this context, the emerging formula centered on physician-
specialists in hospitals with high-tech machines, drugs, and procedures, with
no concern for cost. Shows tended to focus on patients who would present
them with a problem, and, by the end of the episode, the patient was, more
often than not, cured. There was also an emphasis on “realism” – defined as
“a portrayal [that] reproduces as faithfully as possible certain aspects of the
reality of what practitioners in the institution (lawyers, doctors, police) do
and how they do it”20 – from the beginning, though some shows emphasized
realism more than others. A major change to the formula occurred during the
1970s when doctor shows began to focus on the lives and problems of
physicians rather than on the lives and problems of patients. The evolution of
this formula will be explored in more detail below.
But why did the doctor show formula emerge in the first place? Why is
there a need for a formula? Turow suggests that formulas are one way to
manage marketing uncertainty. Since there is much at stake with the
launching of any television show, parties involved often want some way to
minimize risk, and one way of doing so is by holding onto a tried and true
formula.21 In what follows, we focus on seven influential doctor shows, one
for each of the decades from the 1950s to the 2010s.

The 1950s: Medic and the Origins of the Doctor

Show Formula
Medic was the first doctor show to procure a spot on primetime television,
created by James Moser. In preparation for creating his show, Moser went to
the Los Angeles County Hospital to see what medicine was like. He
“shadowed” there for two and a half years. His goal was to gain enough
material to enable him to create a show that mixed the human side of
medicine with science and technology. It worked. The idea for the pilot
episode was derived from an actual experience that he had witnessed in the
hospital: a young pregnant woman, diagnosed with leukemia, dies right
before her baby is born.
This show established a new paradigm for doctor shows. The show was
advertised with phrases such as “No compromise with the truth!” Previous
doctor shows – such as programs and films based on CBS Radio’s Dr.
Christian (who served as the town cupid, philosopher, and detective in
addition to his role as town physician!) – tended to dramatize the lives rather
than the work of doctors. Moser shifted the drama to clinical experience and
set the plot in the hospital. Moser’s “realism,” however, did not mean
complete accuracy, and he was well aware of his limitations, particularly the
limitation imposed by the twenty-two minute per episode constraint. Indeed,
he realized that his show was not accurate in a number of ways: (1) his plots
were physician-centric; (2) a cure almost always occurred; and (3) chronic
diseases were rarely depicted. Despite these flaws – flaws that, as we will see,
continue to this day – this show took important strides in the creation of a
genre.22

The 1960s: Ben Casey and the Tried and True

Methods of Television
Ben Casey was an important doctor show in the early 1960s. Strikingly, it
was also created by Moser. After Medic had ended in 1956, Moser took
leftover material from Medic and put a new medical twist on it by focusing
on neurosurgery. Television episodes were also increasingly becoming an
hour long, thus giving Moser more plot flexibility. To prepare for his new
show, he again spent time shadowing in the hospital, this time spending ten
months on a neurosurgery ward in L.A. County Hospital. Max Warner, a
neurosurgeon, also helped with the accuracy of the show.
Moser created this show around the stereotype of the nasty attitudes of
surgeons, linking this stereotype to the popular antiheroes of the 1950s such
as James Dean. He also employed the tried and true conventions of
television: he gave Casey a sidekick as well as a love interest, and he inserted
an older-doctor/younger-doctor tension. Such relationships became key to the
plot.

Figure 9. Television series Mercy production photo, 2009–10, NBC,

NBCUniversal/Getty Images.

This photograph reveals a few elements of the contrivance behind a single shot in the
series Mercy, which aired on NBC from 2009 to 2010. The bulky camera occupies a
third of the frame; three crew members occupy a third, leaving roughly a third for the
actor, the patient in the hospital bed.
What we don’t see, farther back, could include more crew members – the
photographer, the camera operator, the director, the script supervisor, a lighting crew,
 the sound crew, the props and set design team, electricians, and more equipment such as
light stands and fixtures, cables, microphone booms and a recording console, video
monitors, speakers, and miscellaneous carts, chairs, and equipment cases. The crew we
see appear to be costumers and makeup artists.
The frame of the shot to be recorded appears on the camera’s viewfinder. The image
is out of focus, but you can see that the camera position is low, relative to the patient’s
head. The framing leaves room for the doctor to stand in the area occupied by the crew.
What about the patient’s cap, the patient’s gown, the IV stand and bag, and what
appear to be a child’s drawings on the wall? We should assume that each item was
selected and deliberately placed in the scene to support the story. Only the cap and
drawings are unusual; the cap stands out because of its color and texture, while the
drawings, at the distance they’re seen in this shot, are generic. In an institutional setting
such as a hospital, only a few elements like the hat and drawings can add texture to a
scene. Doctor shows are usually fast paced with rapid cutting and camera movement,
focused on exchanges between the actors or medical procedures.
One goal of this chapter is to help you become an informed consumer of popular
media. To exercise what you’ve learned, compare a doctor show with an historical
drama, which depends on elaborate costumes and settings, over which the camera lingers
to convey a very different quality of life.

The series was filmed as a dramatic documentary. To preserve tension and

mystery, the hospital was never named and details were withheld about
Casey so that he would be portrayed as “raw,” “puzzling,” and “intriguing.”
The primary focus in each episode was on a guest star; thus, new plot devices
could be introduced while also preserving Casey as a mystery. This also
meant, however, that the show tended to focus on acute medical problems so
that, in general, each episode had to result in either a cure or a death.
The show was a hit. The press loved Ben Casey. The combination of safety
and adventure embodied in Casey especially appealed to women. People
would write to Vince Edwards (who played the role of Casey), asking him for
medical advice. Real doctors, too, wanted to discuss cases with Edwards.
And even hospital schedules were changed to accommodate viewing of the
show.
Yet not everyone was a fan of the show. Some health professionals
complained that the show was teaching bad habits and inaccurate concepts of
medicine. However, the American Medical Association, while sympathetic to
these criticisms, believed that the show, on the whole, was good for the
profession’s image (and the AMA enjoyed its influence in determining what
was portrayed in the show). The Wall Street Journal suggested that Ben
Casey and other such shows constituted a good public relations strategy.
Others, while not attacking the show, used it to criticize medical education. In
an article published in JAMA in 1978, William Regelson laments the fact that
a generation or two prior to 1978 teaching and patient care was valued in
departments of medicine, but now (i.e., 1978), in contrast, only research –
that is, federally funded, granted-based research – is valued, and that
medicine is becoming controlled by economic forces, leading to “Ben Casey
medicine.”23 The fact that Regelson could use the phrase “Ben Casey
medicine” without any further explanation demonstrates the influence of the
show. And his 1978 critique seems to be as true today as it was then.
With Ben Casey, the doctor show formula was now set. The doctor show
formula mixes the tried and true dramatic elements of television with: (1)
medical “realism,” (2) a hospital-based focus, (3) a character selection that is
physician-centric (with an emphasis on specialists), (4) a plot that is
technologically driven, (5) representations of acute illnesses, and (6) a
disregard for the costs of health care.24

The 1970s: M*A*S*H and the Existential Turn

No discussion of doctor shows is complete without M*A*S*H. During a time
when there was skepticism about the viability of doctor shows in general –
some television executives felt that there was only so much that could be
depicted in hospitals and that doctor shows had run their course – M*A*S*H,
which ran from 1972–1983, altered the doctor show formula in two
significant ways: by shifting the existential focus from patients to physicians
and by introducing comedy in a unique way.
M*A*S*H was set during the Korean War (1950–1953), but it was also
indirectly about the Vietnam War (1955–1975). The show followed a mobile
army surgical hospital (M.A.S.H.) unit. The show’s theme song was an
instrumental version of “Suicide is Painless,” an indication of the dark
comedy of the show. This thirty-minute show was based on a film with the
same title, which had done well, and the movie, in turn, also was based on a
novel with the same title.25
M*A*S*H, unlike previous doctor shows, was able to communicate the
absurdity of medicine with doses of comedy to make the truth of inevitable
death palatable. By locating medicine in a war zone – that is, by depicting
doctors treating people who would then go back out on the battlefield to die –
invited the viewer to consider his or her own mortality as well as the meaning
of life: What is the point of life (and medicine) if we are just going to die
anyway? What is striking about M*A*S*H in contrast to other doctor shows
is that the doctor is not in complete control. Just as the doctor is not the
highest ranking military official (and therefore does not have ultimate
authority), the doctor in M*A*S*H does not have ultimate power over death;
patients die. M*A*S*H, in other words, treated doctors as “reluctant draftees”
and not as superhuman heroes.

Exercise: Preparing a Class Presentation

Pick a doctor show. Write a brief synopsis of the premise of the show. Describe the
setting and the main characters. Next, pick a particular episode. Watch the episode once
to become (re)acquainted with the basic narrative. Re-watch the episode, this time taking
notes on ethical issues that are presented in the show. Now pick one ethical issue from
the show on which to present. Next read ethics literature about the issue. Watch the
episode a third time, and pick a scene to show in class for your presentation. Finally,
prepare a presentation that includes the following elements: (1) background information
about the show; (2) a synopsis of a particular episode; (3) a viewing from the show that
presents the ethical issue; and (4) questions for discussion.

The show’s key themes involved the emotional toll of operating on an

ongoing stream of wounded soldiers; the difficulties of working with people
whose personalities are quite different from one’s own; and the pestering
interference of military bureaucracy and hierarchy. The show would make
political points, too. Some critics felt that the show did so effectively without
moralizing. In any case, the original contribution of M*A*S*H was that it
dealt with these medical, political, and personal tensions with dark comedy
that was not heavy handed. There was, to be sure, comedy about medicine
before M*A*S*H, such as the “Doctor Kronkhite” sketch in the mid-
twentieth century where the patient says, “It hurts when I do this,” and the
doctor replies, “Don’t do this.” This kind of comedy is referred to as
“buffoonery.” But the image of the doctor as a buffoon did not really last
because, Turow suggests, organized medicine gained power and prestige
during the 1950s. In other words, doctor shows were beginning to take off at
precisely the time when organized medicine was concerned about its image,
so buffoonery was out. M*A*S*H, in contrast to buffoonery pure and simple,
provided a kind of comedy that humanized doctors without demeaning
them.26

The 1980s: The Cosby Show and the Domesticated

Doctor
The Cosby Show was a major – perhaps the major – television program of the
1980s. Bill Cosby, an African American comedian, played Dr. Cliff
Huxtable, the central character of the show. The Cosby Show focused not
only on the physician’s life but also – straying significantly from the doctor
show formula – on the physician’s home life, thus bringing the existential
turn from M*A*S*H back to American soil with domestic concerns. It is
striking that Growing Pains, another major show during the 1980s, was also
about a doctor. Growing Pains featured Dr. Jason Seaver as a psychiatrist,
and this show, like The Cosby Show, used medicine as a backdrop.
Dr. Huxtable was an obstetrician/gynecologist who had an office in his
home. The choice to make Dr. Huxtable an obstetrician/gynecologist was
intentional on Cosby’s part (he was a creator of the show and its lead actor),
as he wanted to teach important lessons about family life, and he felt that this
specialty especially lent itself to intimate conversations about birth and
growth – the stuff of families.27
The show was more about family life than medical life. But the fact that
medicine was in the background rather than the foreground did not deter
doctors from praising The Cosby Show. In a 1985 commentary in JAMA,
Roselyn Epps writes: “Dr. Huxtable is liked by physicians who hope they’re
a little like him, and by patients who appreciate that kind of doctor.”28
Perhaps another way of saying this is that doctors appreciated seeing a
physician with a good work-life balance when they had difficulty maintaining
their own.
It is worth pointing out that, in scholarly literature, The Cosby Show has
been examined more along the lines of race than along the lines of medicine.
Leslie Inniss and Joe Feagin build on research reported in Sut Jhally and
Justin Lewis’s Enlightened Racism: The Cosby Show, Audiences, and the
Myth of the American Dream.29 Inniss and Feagin draw on interviews that
they conducted and found a genuinely mixed response to the show. On the
one hand, some interviewees felt that the show was unrealistic in that there
was an absence of the unique struggles that African Americans face and that
the show more or less portrayed a white family with “black faces.” On the
other hand, other interviewees felt that it is not the job of television to be
“realistic” and that fantasy images can be inspirational – that is, they can
offer a picture of what life should be like, not what it is like, and that the
Huxtables can be seen as role models in this regard. Discussions of race have
been undeveloped in medical humanities and bioethics, so contributions such
as these are much needed.30

The 1990s: ER, Diversity, and Cultural Pessimism

The longest-running doctor show in television history is ER, running, as
noted, from 1994–2009; it also achieved 122 Emmy Award nominations. The
show is noteworthy for these numbers alone. In addition to achieving these
numbers, the show also blazed new trails (such as portraying doctors in
racially, ethnically, and sexually diverse ways). Subsequent shows, such as
Scrubs and Grey’s Anatomy, as well as more recent female-centric shows
such as The Mindy Project and Emily Owens, M.D., benefited from the paths
cleared by ER. Indeed, it was ER (arguably building on the success of The
Cosby Show’s depiction of an African American doctor) that sculpted a new
“mosaic” of American doctors, one that was in line with actual practice.
Doctors in ER were male, female, white, black, South Asian, straight, gay,
U.S. born, immigrant, and so forth.
A new sense of medical realism was also cultivated in ER. The show was
fast-paced, high-tech, and quasi-documentary. It depicted weaker
relationships with patients, more angst-ridden health professionals, and more
bodily gore. In Body Trauma TV, Jacobs notes that Michael Crichton (1942–
2008), the creator of ER, wrote the script for the show in 1974 but was unable
to procure a pilot for a series until he teamed up with Steven Spielberg.
Jacobs also notes that John Wells, executive producer of China Beach, felt
that the script for ER was off-putting to many. He writes:

[Y]ou didn’t know who you were supposed to care about [and] ... there
 wasn’t a beginning, middle and end .... ER was almost like a pointillist
painting ... looking closely at the bits and pieces of scenes, they seemed
not to make sense. But when you stepped back, they added up to an
emotional tapestry that was very moving.31

Jacobs also notes that the tone of ER was different from previous doctor
shows. The show often offered a spirit of disillusionment rather than
reassurance. This, to Crichton, was a part of his take on “medical realism.”
Jacobs adds that this spirit of disillusionment could be a reflection of a
growing cultural pessimism in American society.32
In any case, this new dark sense of realism was appreciated by viewers.
One reviewer wrote, “There are few miracles, and stories don’t always have
happy endings. People do die.”33 The reviewer also noted that the days when
health professional groups controlled the content of doctor shows (to portray
health professionals in a favorable light) are over, as ER depicts some health
professionals in a less than favorable light (such as residents sleeping on duty
and a nurse overdosing on drugs). The show also portrayed residents working
for eighty hours a week and making only $36,000 a year – a truth that was
not widely known among the general public. But the show was unrealistic in
other ways. Medical students, for example, do not spend an entire year in the
emergency room, as was depicted on the show. Turow observes that the show
still contained the traditional problems of doctor shows: it dealt primarily
with acute incidents; health care was depicted as hierarchical and physician-
centric; and top-of-the-line care was provided without a sense of the costs.
Despite these shortcomings, the show was a huge success and was important
for the development of the genre.34

The 2000s: House as a New Kind of (Anti)hero?

The most significant doctor show of the 2000s, at least during the latter half
of the decade, was House, M.D., which ran from 2004–2012. House is about
Dr. Gregory House (or simply “House”), whose specialty is infectious
disease. He is portrayed as a kind of Sherlock Holmes figure, able to figure
out bizarre medical cases with flashes of insight. He is also depicted as a
brash diagnostician who has questionable personal and professional ethics
(e.g., he often speaks uncaringly to patients and suffers from an addiction to
pain medication).
In House, M.D. vs. Reality, Andrew Holtz offers a broad look at the show
and its context. Many of the criticisms of doctor shows previously noted still
apply to House, M.D. – the show, for example, tends to focus on sensational
issues and cost is not taken into account sufficiently. However, one study
found, strikingly, that House, M.D. as well as other recent medical dramas
actually display worse than actual health outcomes in hospitals.35 This is
counterintuitive, because doctor shows historically have overrepresented
cures. Some media scholars think that this is because networks like HBO
have pushed the boundaries of television, enabling a number of shows to
emerge that can yield “a darker, grittier portrayal of life – and more
frequently death.”36
Bioethicists and medical humanists have displayed a recent interest in
House, M.D.37 One thoughtful analysis by Elena Strauman and Bethany
Goodier published in The Journal of Medical Humanities analyzed the first
two seasons of the show. They found that:

House is at once similar to, and different from, the classic medical
drama. On the one hand, House repeats a familiar formula – a central
physician-hero who cures patients with the help of a supporting team.
However, while early doctor shows focused on the all-knowing, all-
caring physician hero and later generic iterations focused on a caring but
infallible physician-hero, House challenges audiences by offering a
physician who, on [the] one hand, is the heroic, maverick scientist who
always finds the answer in time to cure the patient, and on the other, a
wholly flawed and often unlikable character who lacks empathy and
decency toward patients and co-workers.38

Strauman and Goodier also observe that the show, as a whole, does recreate
the early physician hero who is both scientifically competent and
empathetically attuned by complementing House with other physicians and
health care professionals who do attend to the non-biomedical aspects of
healing even while he does not. As they put it: “It literally ‘takes a village’ to
produce ‘ideal’ medicine.”39 The show, in any case, does privilege the
science (i.e., the biomedical aspects) over the art (i.e., the patient care
aspects) of medicine. In the words of House: “Treating illness is why we
became doctors. Treating patients is actually what makes most doctors
miserable.”40

The 2010s and Beyond: The Mindy Project and

Future Directions for Doctor Shows
The Mindy Project premiered on Fox in 2012. The show centers on Mindy
Kaling (the stage name of Vera Mindy Chokalingam), who is well known for
her roles in producing, directing, writing for, and acting in the comedy The
Office. In The Mindy Project, Kaling plays the role of Mindy Lahiri, an
obstetrician/gynecologist. While The Mindy Project is not the first doctor
show to feature a woman as the series lead – Dr. Quinn, Medicine Woman
was a prominent precursor – it is the first American television series to
feature a South Asian American as the lead actor. Kaling also writes for the
show. Time will tell how influential this show will prove to be; it very well
could alter the doctor show formula in unprecedented ways, perhaps by being
informed by the experience and epistemologies of women.

Conclusion
“Although neither the medicine nor the bioethics of these TV dramas is real,”
influential bioethicist George Annas (1945–) writes, “both are often so
compellingly portrayed as to provide us with extraordinary opportunities to
use them to encourage more in depth discussion, and to make bioethics itself
more accessible and democratic.”41 This chapter intimated pedagogical,
pragmatic, and political reasons for medical humanists and bioethicists to pay
attention to doctor shows while tracing the evolution of the doctor show
formula through seven notable doctor shows. We noted that the doctor shows
produced to date have had their limits: what counts as “realism” has changed
over time and is never neutrally or objectively determined; visual
technologies and time constraints have often determined how disease is
represented; plot concerns have sometimes worked against the virtues and
values often promoted by medical humanities and bioethics (especially when
doctor shows encourage the illusion that costs do not have to be controlled
and when diseases have been depicted as acute rather than chronic); and these
shows have tended to be physician-centric and patriarchal. But these limits, in
any case, do not weaken Annas’s point; they strengthen it. Indeed, these
weaknesses are all the more reason for bioethicists and medical humanists to
engage, critically, these shows, exploring the opportunities identified by
Annas that television, as a unique form of media, has to offer.

Summation
This chapter explored how doctors have been depicted on American
television. Beginning with a discussion of the existing literature, it examined
the origins of the doctor show formula on programs like Medic and Ben
Casey; the shift toward shows, like M*A*S*H, that focused on the lives and
problems of physicians rather than patients; the emphasis on the doctor’s
family life on programs like The Cosby Show; the growing sense of
disillusionment presented on shows like ER; and the representation of the
doctor as antihero on shows like House, M.D. Then, with a focus on The
Mindy Project, it considered some recent developments in the doctor show
formula. Overall, though, this chapter attempted to emphasize that, while
these TV dramas do not depict “reality,” they can still provide us with
extraordinary opportunities for discussion and reflection.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Do you watch doctor shows? Which show or shows do you watch,
and why?
2. To what extent should doctor shows be based in “reality”?
3. To what extent should doctor shows attempt to educate the public
about matters of health and disease?
4. To what extent should doctor shows engage social issues?

Suggested Viewing: Popular and Important Doctor

Shows
Ben Casey
 Chicago Hope
China Beach
The Cosby Show
Dr. Kildare
Dr. Quinn, Medicine Woman
Emily Owens, M.D.
ER
Grey’s Anatomy
House, M.D.
M*A*S*H
Marcus Welby, M.D.
Medic
The Mindy Project
Nip/Tuck
Scrubs

Advanced Reading
Virginia Berridge and Kelly Loughlin, eds., Medicine, the Market and
the Mass Media
Lester Friedman, ed., Cultural Sutures: Medicine and Media
Kirsten Ostherr, Medical Visions: Producing the Patient through Film,
Television, and Imaging Technologies
Leslie Reagan, Nancy Tomes, and Paula Treichler, eds., Medicine’s
Moving Pictures: Medicine, Health, and Bodies in American Film and
Television
Clive Seale, Media and Health
Sandra Shapshay, ed., Bioethics at the Movies
Joseph Turow, Playing Doctor: Television, Storytelling, and Medical
Power

Journals
Continuum: Journal of Media and Cultural Studies
Feminist Media Studies
Historical Journal of Film, Radio and Television
 Journal of Popular Film and Television
Media, Culture, Society
Television and New Media

Programs
Berkeley
http://ugis.ls.berkeley.edu/mediastudies/
The New School
http://www.newschool.edu/public-engagement/ma-media-studies/

Online Resources
Bioethics in Television Entertainment
http://bioethicsmedia.org/about/
The Medical Futures Lab
http://www.medicalfutureslab.org/
The Museum of Broadcast Communications
http://www.museum.tv/
 10 Poetry and Moral Imagination
I don’t see any reason why doctors shouldn’t read a little poetry as a
part of their training.1
– Anatole Broyard

Abstract
This chapter explores how poetry can contribute to medical
humanities. Beginning with a discussion of how poetry deals with the
raw material of human experience – including experiences of illness
and injury, healing and grief, love and death – it examines five poems
that are particularly relevant to students of medical humanities: Alan
Shapiro’s “Someone Else,” James Dickey’s “The Scarred Girl,”
Robert Cooperman’s “What They Don’t Know,” Stephen Knight’s
“FROM The Fascinating Room,” and Sharon Olds’s “The Learner.”
Then, with a focus on how poetry “makes language care,” it considers
how these poems – experienced vicariously but intimately – animate
our moral imagination and transport us into the lives of others in
ways that enhance our empathetic understanding.

Introduction
Medical people are taught to read for facts and data, an undeniably useful
skill. But there is so much more to the written (and spoken) word than
information. We read for pleasure and inspiration as well as edification. We
read because we want to learn and to be informed. And we read to deepen our
knowledge and expand our horizons. Reading can broaden our experience
and enrich our lives; it can enchant us, quicken our spirits, and shape our
sentiments. To read for meaning yields sympathetic understanding; to read
for inspiration yields hope, and possibly transformation. We filter our self-
understanding and the way we see others through experiences encountered
vicariously in our reading of imaginative literature. But poetry? Why poetry?
Marianne Moore (1887–1972) had this to say about it:

“I, too, dislike it: there are things that are important beyond all this
fiddle.
Reading it, however, with a perfect contempt for it, one discovers in
it after all, a place for the genuine.
Hands that can grasp, eyes
that can dilate, hair that can rise
if it must, these things are important not because a
high-sounding interpretation can be put upon them but because they are
useful...
if you demand on the one hand
the raw material of poetry in
in all its rawness and
that which is on the other hand
genuine, then you are interested in poetry.”2

The raw material of human experience – including experiences of illness

and injury, healing and grief, love and death – and that which is genuine,
honest, and authentic will serve our purposes here as a good enough answer
to the question: why poetry? To be sure, “Poetry belongs to the strange,” as
Cynthia Ozick (1928–) once put it. “But when we say that poetry is strange,
we mean not that it is less than intelligible, but exactly the opposite: poetry is
intelligibility heightened, strengthened, distilled; and also made manifold ....
A poet has the same access to the language pool as a tailor, an archaeologist,
or a felon. How strange that, scooping up words from the selfsame pool as
everyone else, a poet will reconfigure, startle, and restart those words!”3
But what to make of Moore’s idea that poetry can be useful? Useful in
what way? The conventional view is that a poem is what it is, stands on its
own, and is therefore not “usable” instrumentally toward some extrinsic end.
W. H. Auden’s (1907–1973) claim that poetry makes nothing happen seems
plausible in a strict sense: “Poetry is not concerned with telling people what
to do, but with extending our knowledge of good and evil, perhaps making
the necessity for action more urgent and its nature more clear, but only
leading us to the point where it is possible for us to make a rational and moral
choice.”4
Particularly pertinent to our consideration of poetry and moral imagination,
Auden says elsewhere, “Poetry is speech at its most personal, the most
intimate of dialogues. A poem does not come to life until a reader makes his
response to the words written by the poet .... Poetry must either be ‘read,’ that
is to say, entered into by a personal encounter, or it must be left alone.”5
This chapter explores the idea that poetry must be entered into by an active
reader, one who engages in what Ozick calls “the labor of human
imagination,”6 the readerly endeavor to move from words to meaning, from
letter to spirit. It will do this by offering interpretations of a selection of
contemporary poems that bear in various ways on experiences of illness and
injury in the context of modern medical practice.7
Poetry may seem forbidding at first but on closer acquaintance it can be
seen to be just another language. And fortunately, as Kenneth Koch (1925–
2002) observes, “Like other languages, the poetic language can be picked up
starting anywhere. One can study it or just begin reading.”8
So let’s begin.

Someone Else
When she had come to live with them, by then
vanity was all her stroke had left her.
Yet it became another kind of health,
a way to get through days when she would wake
in her wet bed, a child again, afraid
she might be found before the sheets were clean;
or showering, when she would have to see her body
like someone else resisting her, so stiff
it only let her turn enough to reach,
not wash the bitter smell that clung like shame.
So she would spend the mornings struggling
with her silk slip and dress, and work her stockings
 up her legs till they seemed agile with shimmering.
the rouged cheek, the hair done up, the nails polished till the brightness
made her hands
(if only they’d keep still) less like a stranger’s –
these enabled her to leave her room
and face them, and believe the care she needed was what they owed her,
what she permitted them to give. They were,
she would tell herself, tottering her great
weight down the stairs, no better than her husbands,
those first betrayers: the sullen courtesy
her grandchild showed, the irritation hiding
in her daughter’s pity, she could at least ignore them
(at least there would be power there), and wait
till they went out, wanting them out,
so she could feel finally at home,
the tv on, just her and her celebrities.
She could anticipate each set response,
each misery. Nothing could surprise her.
And with a kind of joy she could be certain
that even if some star walked from the screen
the mirror, always at hand, would show her hair
in place, her face powdered; she could feel
the aftertaste of mouthwash, could even savor
the bitter cleanness of her mouth, and know,
nearly invincible, that she was ready,
should anybody come to take her out.
– Alan Shapiro9

The subject of this poem is a mother and grandmother who, betrayed by

her body, has come to live with her daughter’s family. It is an arrangement
dictated by necessity. She needs their care but resents it. They pity her and
tolerate her, all the while wishing it weren’t so. She maintains a kind of
control over a life unexpectedly thrust upon her by putting necessity to work
for her, in allowing her family to provide the care she needs. In a body grown
strange and recalcitrant, it is vanity that lets her come out at all and settle
down to watch the reassuringly predictable television soaps. Her vanity is
“another kind of health” that gets her through days of shame and bitterness.
More than this, there, is “a kind of joy” in the certainty that if a celebrity were
to step from the screen (or if death were to announce itself?), she would be
composed, well groomed, ready to “go out.”
Poetry persuades not by argumentation or exhortation but by evocation.
Poems are often not immediately transparent to meaning but require studied
attentiveness accompanied by an openness to possibility. The search for sense
is sought by sorting and weighing evidence available in or alluded to in the
text. In this process, insights take form in the reader’s (or listener’s)
imagination. As a plausible rendering of Shapiro’s poem begins to dawn, we
are able to imagine: so this is how it can feel to live with the aftereffects of a
stroke.

Case Study: Alan Shapiro and Evocation

With the idea that poetry persuades not by argumentation or exhortation but by
evocation in mind, go back and read Alan Shapiro’s “Someone Else” again, paying close
attention to the details he uses to help you imagine what it might be like to live with the
aftereffects of a stroke.

1. While humans tend to privilege the sense of sight, there is more to experience
than vision alone. What senses does Shapiro engage in “Someone Else”? How
do these details give you a better understanding of the woman’s experience of
illness?
2. The third and fourth stanzas of “Someone Else” indicate that the woman looks
forward to time away from her family, time when she can be alone with
television and her mirror. Why might the woman feel like this? What evidence
is there for your position?
3. Consider the title of the poem: “Someone Else.” How does this title relate to the
rest of the poem?

The Scarred Girl

All glass may yet be whole
She thinks, it may be put together
From the deep inner flashing of her face.
One moment the windshield held
The countryside, the green
Level fields and the animals,
And these must be restored
To what they were when her brow
Broke into them for nothing, and began
Its sparkling under the gauze.
Though the still, small war for her beauty
Is stitched out of sight and lost,
It is not this field that she thinks of.
It is that her face, buried
And held up inside the slow scars,
Knows how the bright, fractured world
Burns and pulls and weeps
To come together again.
The green meadow lying in fragments
Under the splintered sunlight,
The cattle broken in pieces
By her useless, painful intrusion
Know that her visage contains
The process and hurt of their healing,
The hidden wounds that can
Restore anything, bringing the glass
Of the world together once more,
All as it was then she struck,
All except her. The shattered field
Where they dragged the telescoped car
Off to be pounded to scrap
Waits for her to get up,
For her calm, unimagined face
To emerge from the yards of its wrapping,
Red, raw, mixed-looking but entire,
A new face, an old life,
To confront the pale glass it has dreamed
Made whole and backed with wise silver,
Held in other hands brittle with dread,
A doctor’s, a lip-biting nurse’s,
Who do not see what she sees
Behind her odd face in the mirror:
 The pastures of earth and of heaven
Restored and undamaged, the cattle
Risen out of their jagged graves
To walk in the seamless sunlight
And a newborn countenance
Put upon everything.
Her beauty gone, but to hover
Near for the rest of her life
And good no nearer, but plainly
In sight, and the only way.
– James Dickey10

In James Dickey’s (1923–1997) poem, we encounter a girl who lies hugely

bandaged (“her face, buried”) as the result of an accident that threw her face
first into the windshield of the car in which she was riding. Just prior to the
accident, “the windshield held” – it was intact, it shielded her in the vehicle,
and it framed a bucolic scene. In a flash, at the moment of impact, this
pastoral scene, this peaceful life, was needlessly, painfully broken. The poet
metaphorically conflates the girl’s face and the car’s windshield. They
splinter simultaneously. We know that a shattered windshield cannot be
repaired. We infer from the poem’s title that the girl’s face cannot be restored
to seamlessness. But in spite of the brute facticity of brokenness here, this
poem speaks, finally, of restoration and reconciliation.
The poet imagines what the girl may be thinking as she waits for her
wounds to heal: “All glass may yet be whole.” This is more than a mere
thought; it is a yearning and a dawning. As she thinks of the field as she last
saw it, and all that it signified of beauty and wholeness, it comes to the girl
that the countryside and the animals that splintered on impact can be restored.
The restoration will depend on her; the fate of the fragmented meadow and
the broken cattle lies in her way of seeing. The girl can recall the view
through the windshield prior to the crash, thereby resurrecting the pastures
and cattle from their “jagged graves.”
But there is another field here, one the girl does not (yet) think of. It is a
battlefield whereon a war for her beauty is already lost. Her face is not only
buried under gauze; it is gone for good. Although she knows that her face
will not be as before, she cannot imagine how it will look when the
wrappings come off. We – doctor, nurse, reader – transported by the poet into
the girl’s presence, dread the girl’s reaction when she confronts her scarred
face. But our anxious anticipation is misplaced. What the girl sees in the
mirror is an “odd face,” but that is not all. Looking past the face to the
surrounding background, she sees all glass made whole – the pastures and the
cattle, once in pieces, now restored and undamaged, the splintered sunlight
seamless again, and “a newborn countenance put upon everything.” What is
this countenance? The girl’s outlook, perhaps, her way of seeing herself and
the world, now changed. She will live with the memory of her former beauty,
which must be kept at arm’s length for the rest of her life, and she will come
to terms with the hard fact of her new face. Though her face is scarred, she
and her world are intact. The scarred girl is reconciled. It is “the only way.”

What They Don’t Know

Big companies figure out all sorts of stuff about us we don’t even know
ourselves – from how many headaches we get to how much dust we
vacuum up. They know how many times we change the babies’ diapers,
how often we lose the cap to our toothpaste and what we think of our
local car dealer.
– The Wall Street Journal

But they haven’t figured out his last headache

began to build when the specialist
told them his wife had cancer,
and he had to listen, her hand trembling in his,
his head buzzing as if his next door neighbor
had once again gone berserk
with his chainsaw and dwindling stand of trees.
Afterward, he escorted his wife to the car,
feeling her feather-light on his arm, no, more like a rag filthy
from cleaning toilets and furnaces.
He felt ashamed of his fear of touching her,
and knew she sensed his terror,
when her fingers withdrew
as he opened the car door
and they drove home silent as the sky
minutes following the freight train of tornadoes.
 After he took the babysitter home
he fumbled for the aspirins,
considered taking them all
while his wife changed the baby’s diaper,
clucking too casually that the girl
had conveniently forgotten that chore.
That night, as he lay on his back in bed,
the bottle of aspirins on the night table,
he still heard the world buzz
in the doctor’s words; his wife
touched his arm that felt made
of wood petrified a million years ago.
“What about me?” she whispered,
the first words she had spoken in hours,
her voice dry as trees
about to burst into forest fires,
her tears trembling echoes
of hot film enveloping the whole forest.
– Robert Cooperman11

The mood of this poem is one of dread. The voice speaking from the poem
is that of a husband terrified, “petrified,” by his wife’s cancer diagnosis. He
treats her as if she were contagious. His head is buzzing, the world is
buzzing, and he harbors thoughts of suicide. The poem is full of foreboding
and menace. Only hours later, when she reaches out to him, does he hear in
her voice and see in her tears her fear of the coming conflagration.
Poems are schools of feeling; they go straight to the heart – the heart of the
matter, and the reader’s heart. But if we readers are to be edified as well as
touched or moved, our emotions must be schooled. It is not a question of
either/or, but of both/and. Cooperman’s poem arouses our emotions and
challenges our intellect. We feel the husband’s head buzzing, his shame at
feeling that his wife is tainted, and his inability to reach out to her. And we
feel his wife’s despair and deep sadness at having been left so utterly alone.
We feel all this with an immediacy that, if left at that, might come to nothing
more than a fleeting upsurge of emotion. As a school of feeling, the poem
also challenges us to think about the meaning of what we have felt.
 But are thinking and feeling two distinct activities? Might it be that the
long-honored distinction between intellect and emotion fails to illuminate
what is happening when we readers try to plausibly account for the
abundance of emotion evoked by Cooperman’s poem? Maybe the perceived
divide between heart and head is a distinction without a difference. Perhaps,
instead, it is the faculty of imagination, conceived as what Northup Frye
(1912–1991) calls “the combination of emotion and intellect,” [emphasis
added] that is at work here.12 Or perhaps, as Mary Warnock (1924–) has
argued, it is best thought of as a capacity, a “capacity to look beyond the
immediate and the present,”13 “a power in the human mind which is at work
in our everyday perception of the world and is also at work in our thoughts
about what is absent; which enables us to see the world, whether present or
absent as significant, and also to present this vision to others, for them to
share or reject. And this power ... is not only intellectual. Its impetus comes
from the emotions as much as from the reason, from the heart as much as
from the head.”14

Figure 10. Typography, designer unknown.

 We are taught to distinguish poetry from prose by the form it takes on the printed
page, most commonly the use of stanzas, which are groups of two or more short lines, as
you see in this picture. The form of poetry on a printed page also highlights the qualities
of the art of typography.
Compare the letters in the title of the poem Musée Des Beaux Arts to the letters in the
first stanza. How are they different in height, width, letter style, use of upper and lower
case, spacing between letters, and spacing between lines? Examine the paper. Imagine
rubbing the page between your thumb and forefinger. Would it feel smooth or textured?
How does the paper of this book feel between your fingers?
Compare the typography of this poem with any other printed form you have near you
– this book, other books, a business card, the label on a bottle of prescription medicine.
How is the typography of the poem different from other typography around you, even on
your computer screen? Why might the typography of a roadside billboard be different
from the typography of the Physicians’ Desk Reference?
Does your handwriting approach art in the way you shape letters? Can you imagine
drawing each of the letters in this poem by hand and trying to put into each letter
something of the poem itself? That was the goal of the printers and type designers who
revolutionized intellectual life after 1450. They not only made millions of books widely
available for the first time in history; they also made beautiful books that are treasures in
form and content.
To pursue these ideas, search the web for the history of printing, Johannes Gutenberg,
Aldus, Manutius, and typography. For terms to describe typography, search for “white
space,” “serif and sans-serif,” and “monospace or proportional type.”

FROM The Fascinating Room

Her bedroom hardening
to a small museum:
stilts of light
breaking the clouds,
freckled with dust
and quietly
rusting the wallpaper;
the mattress and the sheets
rippling with her shape;
the burning bedside lamp...
I log these observations
by repeating them to myself
like the nine times table
or learning quotations.
On the desk,
the shadow of her pencil
deepens, minute by minute,
like a bruise –
she has sharpened it
to within three inches
of nothing. Now, I watch
saliva evaporate
where teeth have cracked
the red paint irreparably.
Her plump handwriting
swims on a sheet of foolscap
capable of cutting skin.
I cut my finger
then run my tongue along
the thin and bloodless crack.
In a dish of liquid sugar,
five dead honey bees
have folded their wings
like hairy full stops.
In the corner, her lemonade
is going flat:
bubbles rise
from the side of the tumbler
to vanish on the surface.
I count them for a while
then turn to her essay.
Floral curtains,
she begins,
frame the window
where six crystal birds
stand on the window-sill.
There, the rays
of the morning sun
make them flash
with an iridescent light.
A family of china rabbits
lives on my bedside table,
under the shelter of the lamp.
Tucked in an alcove
on his bed of moss on the shelf,
my horse’s skull grins at me.
Brick on brick, her paragraphs
Crumble down the page:
everything her room contains
is falling into place.
And with a tact
her father would admire,
she doesn’t mention the tree
pushing up to her –
from the foundations,
through the dining-room –
spreading branches
on her ceiling,
leaning against the sill.
Her carpet peels back from the trunk.
In the undergrowth
of scribbles, I remember,
she has written,
the warm summer afternoon,
when we all went
into the countryside
looking for a sheep’s skull
to put with my books.
My brothers have one in their room
and I was envious
for I collect things too.
Instead, I discovered
The horse’s skull
Now they are the envious ones!
And still
not a word of the tree –
how it widens
the hole in her floor
 year after year; how branches
twist round the legs of her desk;
how still it is,
being so excluded
from every breeze...
As the sun
fades from the runnels of the trunk,
I rise and listen to the thunder:
like the Twenty-Third Psalm
mumbled in assembly.
– Stephen Knight15

In Stephen Knight’s poem, we find ourselves in a bedroom, whose we do

not know except that it is “Her bedroom.” Only gradually is it revealed that
she is a child: she has sharpened her pencil to the quick and chewed on the
stub as children are wont to do; her handwriting is plump; and her essay bears
childlike characteristics of composition and tone. But before we get to the
essay, central as it is to the poem, as announced in the poem’s title, we learn
that the bedroom is museum-like, small and quiet. And the words used to
describe the setting are dust and rust and bruise. There are, as yet inscrutable,
hints of irreparability and finality – honey bees that have given up the ghost,
lemonade bubbles rising in a glass and vanishing. And yet, the bed bears the
shape of its occupant, the bedside lamp is burning, saliva is still evaporating
from her pencil, and her lemonade is only now going flat. All these
observations are being made by a witness who is never explicitly identified. I
log, I watch, I cut, I count – not unlike chart dictation. Let’s imagine this “I”
to be the girl’s doctor who attended her in her dying.
The doctor’s attention turns from the girl’s room to her essay. As he reads,
he conjures what she must have been feeling toward the end. Her paragraphs
do not build up brick by brick, but “crumble down the page.” And yet, though
the end is near, everything in her room begins to make sense from the girl’s
point of view. Her essay is about floral curtains, crystal birds, morning sun,
and iridescent light. What she thinks of when contemplating her coveted
horse head is not its death grin but the warm summer afternoon outing on
which she trumped her brothers’ treasured sheep’s skull with her more
impressive discovery. The mood of her essay is contentment. She describes
the family of china rabbits sheltered by a lamp, and the horse’s skull
comfortably tucked away on a bed of moss in an alcove. And never a mention
of the “tree,” ominous and invasive, overtaking her body. While cancer was
sapping her life, everything in the girl’s room spoke to her of satisfaction,
protection, and comfort. Her room, to her, was fascinating.
The observer who records this experience is meticulous, even reverentially
attentive, allowing us to see what the girl sees and what she has written, and
to “overhear” what he imagines her state of mind to have been near the end.
The observer rises in response to having witnessed something profound and
hears in the thunder the words of the Psalmist, “Yea, though I walk through
the valley of the shadow of death, I will fear no ill, for thou art with me ....”
The entire experience is imbued with a sense of wonder.

The Learner
When my mother tells me she has found her late husband’s
flag in the attic, and put it up,
over the front door, for her party,
her voice on the phone is steady with the truth
of yearning, she sounds like a soldier who has known
no other life. For a moment I forget
the fierce one who raised me. We talk about her sweetheart,
how she took such perfect care of him
after his strokes. And when the cancer came
it was BLACK, she says, and then it was WHITE.
–What? What do you mean? –It was BLACK, it was
cancer, it was terrible,
but he did not know to be afraid, and then it
took him mercifully, it was WHITE.
– Mom, I say, breaking a cold
sweat. Could I say something and you not
get mad? Silence. I have never said anything
to question her. I’m shaking so the phone
is beating on my jaw. Yes... – Mom,
people have kind of stopped saying that, BLACK for bad,
WHITE for good. – Well, I’M not a racist,
she says, with some of the rich, almost sly
pride I have heard in myself. Well I think
 everyone is, Mom, but that’s not
the point – if someone Black heard you,
how would they feel? – But no one Black
is here! she cries, and I say Well then think of me
as Black. It’s quiet, then I say It’s like some of the
things the kids tell me now,
“Mom, nobody says that any
more.” And my mother says, in a soft
voice, with the timing of a dream, I’ll never
say that anymore. And then a little
anguished, I PROMISE you that I’ll never
say it again. – Oh, Mom, I say, don’t
promise me, who am I,
you’re doing so well, you’re an amazing learner
and that is when, from inside my mother,
the mother of my heart speaks to me,
the one under the coloratura,
the alto, the woman under the child – who lay
under, waiting, all my life,
to speak – her low voice, slowly
undulating, like the flag of her love,
she says, Before, I, die, I am, learning,
things, I never, thought, I’d know, I am so
fortunate. And then, They are things
I would not, have learned, if he, had lived,
but I cannot, be glad, he died, and then
the sound of quiet crying, as if
I hear, near a clearing, a spirit of mourning
bathing herself, and singing.
– Sharon Olds (1942–)16

Who is the learner here? The mother, certainly, but also the daughter. Here
is a woman looking through her deceased husband’s things, stored in the
attic, and finding a flag, a keepsake perhaps from his stint in the military. She
has displayed it over the front door in preparation for “her party.” It could be
Memorial Day or the Fourth of July. The poet encourages us also to imagine
it to be the widow’s first attempt to come out following her husband’s death.
The daughter is talking with her mother on the phone. The cadence is
conversational, though intense – call and response, parry and thrust –
ultimately yielding sympathetic understanding.
The mother’s voice is “steady with the truth of yearning, she sounds like a
soldier who has known no other life.” The truth of yearning. What truth is
this? The life the widow has known has been that of taking good care of her
husband following his stroke, then caring for him when cancer came, and
yearning for it to end, and – hesitantly, tentatively – also yearning for a life of
her own beyond that of a soldier “who has known no other life.” Yearning
also for him. As a result of his stroke, the mother’s husband was unaware that
cancer was killing him, but to her it was “terrible,” and to her his death was a
relief.
Then the mother-daughter quarrel, tinged with anger and anguish, pride
and shame, about racism and respect, but also about long suffering, language,
love, and guilt. Not until the daughter catches herself and shifts from
disapprobation and instruction to comfort and reassurance – “you’re doing so
well, you’re an amazing learner” – does she hear the mother of her heart
speak the truth in mature, measured tones – not now the calm truth of
yearning but the conflicted truth of knowing that she could not have come
into her own as long as her husband lived and needed her care, but that “I
cannot, be glad, he died.” At the utterance of this sad truth from deep within
her and the weeping brought on by its recognition, the mother’s spirit of
mourning emerges, in the poet’s imagination, into a place where she is
bathing, not her child nor her sick husband but herself – “and singing.”
“The Learner” temporarily transports us out of our own experience into the
life of another in such a way that empathy is evoked. To empathize is to
simultaneously feel one’s way into another person’s situation while holding
to the awareness that the other person’s experience exists independent of us.
In “The Learner,” the widow’s experience is brought within the range of
something we can imagine. It remains the widow’s experience, not ours. And
yet, through the poet’s labor of imagination, and ours as readers, we can
come to know what it’s like to be in such a situation, to undergo such an
experience, to suffer like that.

Conclusion
“Poetry makes language care,” writes John Berger (1926–), “because it
renders everything intimate. This intimacy is the result of the poem’s
labor.”17 Berger’s insight has been borne out by our reading of the poems in
this chapter. Thanks to the poems’ labor, we have been present as the scarred
girl begins the process of coming to terms with a life-changing injury. We
have been within earshot of a married couple reeling from the wife’s
disturbing diagnosis. We have taken in the girl’s fascinating room and read
the essay she wrote shortly before she died. And we have overheard a tense
conversation between a mother and her daughter occasioned by shame and
deep grief. The experiences vicariously but intimately encountered in these
poems animate our moral imagination and transport us into the lives of others
in ways that enhance sympathetic understanding.

Summation
This chapter explored how poetry can contribute to medical humanities.
Beginning with a discussion of how poetry deals with the raw material of
human experience – including experiences of illness and injury, healing and
grief, love and death – it examined five poems that are particularly relevant to
students of medical humanities: Alan Shapiro’s “Someone Else,” James
Dickey’s “The Scarred Girl,” Robert Cooperman’s “What They Don’t
Know,” Stephen Knight’s “FROM The Fascinating Room,” and Sharon
Olds’s “The Learner.” Then, with a focus on how poetry ‘makes language
care,’ it considered ways in which these poems can enhance our empathic
understanding. Overall, it emphasized that poetry must be entered into by an
active reader who engages in “the labor of human imagination,” and that this
activity can help us to learn how we move from words to meaning.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Do you like poetry? Why or why not?
2. How do you think the language of poetry might be different from an
 essay or a short story?
3. What do you think it means to have “moral imagination”?
4. Are you convinced by Marianne Moore’s claim that poetry can be
useful? Why or why not?

Suggested Writing Exercise

Go back through the chapter and select a poem that you find interesting.
Spend a few minutes “close reading” the poem – that is, reading with an
attention to the poem’s style, language, and tone. Write, for about ten
minutes, on why you find the poem interesting. Does your interest stem from
what the poem is “about”? Or does it come from another place – from a
specific word, image, or metaphor?

Further Reading
Dannie Abse, The Yellow Bird
Rafael Campo, Alternative Medicine
Alice Jones, The Knot
Jane Kenyon, Otherwise: New and Selected Poems
Sharon Olds, The Unswept Room
John Stone, Music From Apartment 8: New and Selected Poems

Advanced Reading
Angela Belli and Jack Coulehan, eds., Primary Care: More Poems by
Physicians
Gillie Bolton, Reflective Practice: Writing and Professional
Development
Rafael Campo, The Healing Arts: A Doctor’s Black Bag of Poetry
Marilyn Chandler McEntyre, Patient Poets: Illness from Inside Out
Robert Coles, The Call of Stories and Teaching the Moral Imagination
Donald Hall, Without

Online Resources
American Literature Association
http://www.calstatela.edu/academic/english/ala2/
The Institute for Poetic Medicine
http://www.poeticmedicine.com/
Modern American Poetry
http://www.english.illinois.edu/maps/
 11 Doctor-Writers
I want a doctor with a sensibility.1
– Anatole Broyard

Abstract
This chapter explores some of the many doctor-writers who have
reflected on the practice of medicine and the qualities of a good
doctor. Beginning with a discussion of the merged scientific and
humanistic sensibilities of these writers, it examines the work of five
prominent figures: William Carlos Williams, Richard Selzer, Kate
Scannell, Danielle Ofri, and Pauline Chen. Then, with a focus on their
pleas that we attend to the patient’s illness and life world as well as to
the patient’s ailing body, it considers how their work helps us to think
about what it means to practice purposefully.

William Carlos Williams

William Carlos Williams (1883–1963) is best remembered today as a
revolutionary modernist who wrote poetry in the American idiom – poetry
that reflected the distinctive way Americans speak the English language. He
was also a prolific writer of prose – novels and essays – and a playwright.
But Williams’s day job was as a doctor who practiced general medicine and
pediatrics for four decades and composed stories emanating from his practice
experience. Williams’s “doctor-stories” reveal a physician seeing patients
during office hours in his home clinic and making house calls in and around
Rutherford, New Jersey, especially among the often immigrant poor. The
physician is genuinely interested in his patients (“fascinated” would not be
too strong a word), intrigued by their lives, touched by their humanity, and
struck by their authenticity. The narrator speaks in the story, “Ancient
Gentility”: “In those days I was about the only doctor they would have on
Guinea Hill. Nowadays some of the kids I delivered then may be practicing
medicine in the neighborhood. But in those days I had them all. I got to love
those people, they were all right. Italian peasants from the region just south of
Naples, most of them, living in small jerry-built houses – doing whatever
they could find to do for a living and getting by, somehow.”2
In this story, a neighbor asks the doctor to look in on the couple next door.
An old man opens the door of the small house – one room downstairs,
another above – and, speaking no English, smiles and bows his head several
times “out of respect for a physician.” “He was wonderful. A gentle, kindly
creature, big as the house itself, almost, with long pure white hair and big
white moustache. Every movement he made showed a sort of ancient
gentility.”3 The man points to a ladder leading to the upstairs room, and the
doctor climbs up to find the woman he had been sent to see. “Her face was
dry and seamed with wrinkles, as old peasant faces will finally become, but it
had the same patient smile upon it as shone from that of her old husband.
White hair framing her face with silvery abundance, she didn’t look at all sick
to me.”4 The woman says something in Italian, which the doctor took to
mean that she didn’t feel so bad and didn’t think she needed a doctor. After
listening to her heart and palpating her abdomen, he assured her that she was
fine, said goodbye, and backed down the ladder.
The old man, waiting by the door, seemed to be trying to thank the doctor
for coming and apologizing for not being able to pay him. He then pulled a
small silver box from his vest pocket and handed it to the doctor, who was at
a loss as to what to do with it. Seeing this, the old man opened the box and
took a small amount of what appeared to be brown powder between his
thumb and forefinger and placed it on the other thumb. The doctor marveled,
“Why snuff! Of course. I was delighted. As he whiffed the powder
generously into one nostril and then the other, he handed the box back to me
– in all, one of the most gracious, kindly proceedings I had ever taken part
in.” Desiring to show his gratitude but unaware that a pinch of snuff goes a
long way, the doctor overdoes it and bursts into a sneezing frenzy. “Finally
with tears in my eyes, I felt the old man standing there, smiling, an
experience the like of which I shall never, in all probability, have again in my
life on the mundane sphere.”5
Beyond his deep interest in and admiration for his patients, Williams’s
doctor is also unsparingly honest and unforgiving of his own moral lapses
and missteps that occur in the course of his daily rounds.
In “The Use of Force,” there is Mathilda Olsen, a very sick little girl whose
worried parents contacted the doctor after three days of home remedies had
failed to bring down her fever. The mother led the doctor to the kitchen, the
only warm room, where Mathilda was sitting on her father’s lap. “Has she
had a sore throat? Both parents answered me together. No ... No, she says her
throat don’t hurt her .... Have you looked? I tried to, said the mother, but I
couldn’t see.”6
Concerned that the girl might have diphtheria (a number of cases had
recently been diagnosed in other schoolchildren), the doctor assumed his best
professional manner and proposed to take a look at her throat. Mathilda
refused to open her mouth. Taking his time but persisting, he coaxed the girl
to let him look. Despite his entreaties, Mathilda remained defiant. Suddenly,
she took a swipe at the doctor’s face, knocking his eyeglasses to the floor.
Retrieving his glasses, the doctor issued an ultimatum. “Look here, I said to
the child, we’re going to look at your throat. You’re old enough to understand
what I’m saying. Will you open it now by yourself or shall we have to open it
for you?”7 Thereupon, a struggle ensued, escalating into a battle that ended
with the doctor overpowering the girl and forcing a kitchen spoon into her
mouth until she gagged, revealing both tonsils covered with membrane.
Thinking back remorsefully on this experience, the doctor confesses his
shame at having entered the fury with the child despite getting a successful
diagnosis: “the worst of it was that I too had got beyond reason .... The
damned little brat must be protected against her own idiocy, one says to one’s
self at such times. Others must be protected against her. It is a social
necessity. And all these things are true. But a blind fury, a feeling of adult
shame, bred of a longing for muscular release are the operatives. One goes on
to the end.”8
By means of aesthetic appreciation and moral reflection, these two stories
convey a sense of what Joanne Trautmann (1941–2007) described as
Williams’s “merged sensibility.” “In him,” she wrote, “we cannot easily
discern separate medical and humanistic sensibilities.”9 In his autobiography,
Williams had this to say about what might be thought of as the source of this
“merger”: “We catch a glimpse of something, from time to time, which
shows us that a presence has just brushed past us, some rare thing .... [T]he
physician, listening from day to day, catches a hint of it.... Humbly, he
presents himself before it and by long practice he strives as best he can to
interpret the manner of its speech. In that the secret lies. This, in the end,
comes perhaps to be the occupation of the physician after a lifetime of careful
listening.”10
Figure 11. American Poet (William Carlos Williams), 1955, Hulton Archive/Getty
Images.

This is the doctor who wrote about overpowering a little girl and forcing a kitchen
spoon into her mouth in order to confirm that she had tonsillitis. Does anything in this
portrait of William Carlos Williams indicate that he was capable of “a blind fury,” as he
put it? Does the picture display his ability to merge medical and humanistic sensibilities
in the stories that he published about his patients? Is there any indication that the subject
is both a writer and a physician?
The goal of the portrait artist, in painting or photography, is to reveal something of the
character of his or her subject. In the frame, the artist may position the whole figure from
head to toe, half the figure (as in this portrait of Williams), or perhaps only the subject’s
 face. In the space that remains, the artist often includes objects that relate to the subject
in some way.
How did Williams’s photographer allocate space within the frame? Williams himself
occupies the entire left half of the image. Why do you think the photographer positioned
his camera so that shelves of books frame Williams’s head? How did the artist use the
rest of the space, and to what purpose?
Williams presented himself to be photographed in a shirt with two pockets, buttoned,
a bow tie, and eyeglasses with large, light-colored frames. What does each of these
choices contribute to your overall impression of him as a physician and an artist? Would
you want to meet Williams? How might you start a conversation with him?
Portraits of physicians, nurses, and other health care specialists are often displayed in
the public spaces, corridors, and meeting rooms of medical schools, hospitals, and
clinics. When you encounter them, even in passing, examine your first impression. What
is the setting? How is the person dressed, and what might a suit or a lab coat signify?
Does the person appear distant or accessible?

Richard Selzer
Richard Selzer’s (1928–) stories are peopled with the ill and injured,
damaged survivors of close calls, and casualties of the surgical theater. But
for all their suffering, these patients are not pitiable. They are estimable.
What is endlessly fascinating to this doctor-writer is a sacredness that
pervades and envelopes the space of suffering that they occupy. For Selzer,
surgery is a sacred art, redolent with ritual. Surgery is sacred not in a
sectarian, but rather a spiritual sense. Acknowledging “a strong note of
spirituality” in his work, Selzer remarks, “This is only natural for a writer
who sees flesh as the spirit thickened.”11
Selzer’s surgeon is expertly knowledgeable and highly accomplished
technically. Beyond these necessary attributes of competence, his work is
informed and enlivened by a certain sensibility, a refined responsiveness to
pathos. This surgeon has attended many a patient over the years. There was
Joe Riker, the short-order cook with a cancer that had eaten a hole through
scalp and skull, who refused surgery and healed himself with holy water from
Lourdes. And Pete, the hospital mailman with acute abdominal pain:
“Narcotized, he nods and takes my fingers in his own, pressing. Thus has he
given me all of his trust .... ‘Go to sleep, Pete,’ I say into his ear, my lips so
close it is almost a kiss” – the trust received.12
 Another of Selzer’s characters is a young man, back from an excavation of
ancient Guatemalan ruins who presented with an abscessed wound in his
upper arm out of which emerged a menacing-looking gray worm with black
pincers. With deftness (and even greater self-satisfaction), the surgeon stood
poised, hemostat at the ready, and extracted the offender, only to learn from
the pathologist that the organism was the larva of a botfly that was burrowing
its way out, whereupon it would have dropped to the ground and died without
the dramatic intervention of the surgeon. These patients have taught the
surgeon humility in the face of the inexplicable, the necessity of fellow
feeling and the boon of comfort, and modesty.
Selzer, the writer, is a parablist. A parable is a story with meaning beyond
the literal. This second meaning is not buried beneath the words of the story
to be excavated and analyzed, but is there in plain view although only
obliquely discernible – perceptible at a slant.
Selzer’s story, “A Parable,” opens with a doctor discreetly witnessing an
early morning scene in a hospital room where a man lies, inert and near
death, breathing erratically in rapid bursts followed by the suspension of
breathing, then more rapid bursts. “It is called Cheyne-Stokes respiration.
When they start that, you know it won’t be long.”13 An elderly physician in
surgical scrubs, stooped and seemingly somewhat worn down, enters the
room. With a moistened tissue, he wipes pus from around the man’s eyes and
says something to him that the witness cannot hear. The patient then twice
tries to speak but cannot. “When the doctor turns his head to bend an ear to
the lips of his patient, I can see the deep furrow that divides his brow,
extending from the bridge of the nose almost to the hairline. It gives his face
a pained expression. It is a line of pain. Had he been born with it? No, I think
he had not. Rather, it had appeared on the day that he treated his first patient.
At first, it was merely a shadow on his forehead, then a slight indentation
that, over the years, has deepened into this dark cleft that is the mark of all
the suffering he has witnessed over a lifetime as a doctor. It resembles a
wound that might have been made with an ax.”14
As he palpates the patient’s abdomen, the doctor asks, “”Am I hurting
you?” whereupon the patient shakes his head and, astonishingly, stretches a
trembling hand toward the doctor’s head. “The sick man finds the furrow
with his finger, touches, then strokes it from one end to the other, a look of
wonder upon his face, as though he were just waking from a deep sleep. As
he does so, a spicule of light appears to emanate from the doctor’s forehead.
It is a warm light that grows to engulf the two men and the bed. From this
touching, the doctor does not withdraw, but smiles down at the patient with
his sapphiric gaze .... From the doorway, the two men appear to be luminous
.... It is as if I were witnessing a feast .... The two men are dining together,
each the nourishment of the other.”15
The doctor returns the following morning to find the man lying perfectly
still. After unsuccessfully trying to find a pulse, he observes the man’s body
before placing a hand over his heart and closing his eyes. “As he leaves the
room, it seems the furrow is not quite so deep and dark as on the day
before.”16
W. H. Auden (1907–1973) said, “You cannot tell people what to do, you
can only tell them parables; and that is what art really is, particular stories of
particular people and experiences, from which each according to his
immediate and peculiar needs may draw his own conclusions.”17 Parables are
narratives that disclose moral quandaries and illuminate spiritual relations.
Instead of leading listener or reader toward a robust conclusion, as was
perhaps possible at times when matters of the spirit were less unsettled than
they are today, modern parables often simply raise a question for pondering
or persuade by intimation and indirection. What all parables, ancient and
modern, have in common is an impatience with the obvious and a search for
significance that come together in moments of insight. Parables have an
arresting quality that etches them in memory. Because they engage
imagination, they penetrate deeply into experience. They possess the power
to do more than provoke curiosity. They arouse something within by calling
up what the hearer, or the reader, vaguely senses but now can fully see.
In his essay, “Religion, Poetry, and the ‘Dilemma’ of the Modern Writer,”
David Daiches (1912–2005) observed that literary and religious answers to
questions about suffering tend to be responses rather than solutions. “The
answers have force and meaning in virtue of their poetic expression, of the
place they take in the myth or fable or situation presented, and of the
effectiveness with which they project a mood.”18 The projection of a mood
does not solve anything, but, if it is persuasive, it may make life more
tolerable, more interesting, even. Moreover, if life is made more tolerable by
the telling of stories and the artful use of imagery, patients and doctors alike
may thereby be enabled to return to the daily round in the face of experiences
that would otherwise threaten to become unbearable.

Kate Scannell
In her memoir, Death of the Good Doctor: Lessons from the Heart of the
AIDS Epidemic, Kate Scannell recalls the challenges she faced and the
rewards she reaped while caring for patients dying from AIDS at the height
of the epidemic in the 1980s. Soon after completing a three-year fellowship,
Scannell assumed responsibility for a newly established AIDS ward in a large
county hospital and was quickly overwhelmed by the depth of suffering and
the ubiquity of death she encountered there. These patients were suffering
with occult fevers, exotic infections, disfiguring cancers, and they were dying
miserably. Scannell had been trained to aggressively attack AIDS with the
most up-to-date knowledge medicine had to offer. And fight she did. “I
stalked the AIDS ward like a weary but seasoned gunfighter, ready for
medical challenges to present themselves. I would shoot them down with my
skills and pills.” Maintaining this sharpshooter mentality came to seem
increasingly futile in the face of such mass agony. More fundamentally,
Scannell had to admit to herself that she was even “incapable of
understanding and articulating my own experiences.”19
Then one day, Manuel, a twenty-two-year-old man with advanced Kaposi’s
sarcoma was admitted to the ward. “He arrived as a huge, bloated,
violaceous, knobby mass with eyelids so swollen that he could no longer see.
His dense purple tumors had infiltrated multiple lymph nodes throughout his
body, and two had perforated the roof of his mouth. One imposing mass
extended from the bottom of his foot so that he could no longer walk.
Massive amounts of fluids surrounded and compressed his lungs, making his
breathing laborious. Tears literally squeezed through the slits between his
puffy eyelids. One of the first things Manuel said to me was, ‘Doctor, please
help me.’” Scannell sprang into action, bringing her finely honed diagnostic
skills and every appropriate assessment measure and treatment modality to
bear on Manuel’s case – laboratory tests, supplemental oxygen, intravenous
fluids with potassium, blood transfusion, and so on. Checking on Manuel
before leaving that first evening to satisfy herself that she had left no stone
unturned, Manuel said again, “Doctor, please help me,” and Scannell, though
shaken by his suffering, assured him that his medical problems were being
evaluated and treated and that she would discuss next steps with him once he
was stabilized.
Upon her arrival on the ward the following morning, Scannell learned from
a night nurse that Manuel had died. He had asked the evening duty doctor to
help him and the physician, after familiarizing himself with the case,
responded by withdrawing futile treatments that would only prolong dying
and administering additional morphine for comfort. “The nurse said that
Manuel smiled and thanked the doctor for helping him.” Scannell writes,
“My entire body cringed and my soul clenched as I imagined Manuel’s agony
sustained through my unconscious denial of his dying .... Years later I
continue to think of Manuel often, and I ask him to forgive me. I tell him that
I have never practiced medicine in the same way since his death .... I began
learning – how to recognize the sound of my own voice, listen to my patients,
validate the insistent stirrings of my compassionate sensibilities.”20 And, as
these lessons from the heart of the AIDS epidemic convey, Scannell was also
learning how to cultivate a humane professional self-understanding.

Danielle Ofri
In Incidental Findings: Lessons from My Patients in the Art of Medicine,
internist Danielle Ofri recalls and recounts from her early years in practice a
shameful encounter with patient Nazma Uddin and her eleven-year-old
daughter, Azina. Mrs. Uddin is what doctors sometimes call a “difficult
patient.” At this appointment, as on previous visits, with Azina translating
from Bengali, Mrs. Uddin complained of “abdominal pain and headache,
diarrhea and insomnia, back pain and aching arches, a rash and gas pains,
itchy ears and a cough, no appetite. And more headaches.”21 While listening
to the litany of complaints, Ofri saw on the computer screen that in the five
weeks since her last visit, the patient had been to several specialty clinics, to
no avail.
Ofri recalls her own mounting frustration with Mrs. Uddin, to the point
where she desperately wanted the woman out of her clinic office. She had
talked to the patient about stress and depression and their somatic symptoms,
but Mrs. Uddin refused to take antidepressant medications and did not follow
through with psychiatry referrals. Getting nowhere, “I start to resent her, to
hate her, to hate everything about her .... I hate that she routinely keeps her
daughter out of school to facilitate her wild overuse of the medical system.
And I hate how she makes me feel so utterly useless.”22
Now no longer able to mask her anger, she instructed Azina to tell her
mother in no uncertain terms that she was healthy, that most of her symptoms
were related to depression, and that she needed to see a psychiatrist. Azina
dutifully translated the doctor’s orders, then asked, “Are you almost
finished?” Ofri, still seething, nearly failed to notice that Azina, for the first
time ever, was speaking directly to her. The child explained that she had to
take her mother home on the bus, then catch another bus to school, and she
was afraid that if they didn’t leave soon she’d miss a whole day of school.
Ofri wondered aloud why Mrs. Uddin didn’t come to the clinic by herself –
“We do have interpreters available.” Azina: “My mother is afraid to go out by
herself .... My brother is in college, and my father works ....” Realizing that
she had, until this moment, paid no heed to Azina in her own right, Ofri
turned to her and quietly asked, “What is it like at home?” As tears began to
flow, Azina mumbled, “She doesn’t do anything .... She just sits there .... She
doesn’t say anything to us. She doesn’t cook dinner anymore. She doesn’t go
anywhere.” Hearing Azina’s anguished confession, Ofri saw in her mind’s
eye “a little girl cut off from her mother, reeling in the wretched vacuum that
depression creates – a child conscripted to be the fulcrum of cultures,
illnesses, and torments, all the while trying to complete the fifth grade.”23
As Ofri’s perspective shifted from herself and her frustrating inability to
make any headway with this patient, she understood: “Mrs. Uddin ... is truly
suffering. Her daughter is truly suffering.” Moreover (here is the insight that
prompts the reawakening of compassion), “I am not suffering. I am actually
the complainer.”24 Chagrined and humbled, Ofri took the hands of both
Azina and her mother, “for they are both my patients now,” and
acknowledged that “Depression is a painful illness .... Broken souls hurt as
much as broken bones, and the pain spreads to everyone around them.” And
she patiently explained, once again, why it is important to take
antidepressants and see a psychiatrist. Mrs. Uddin agreed to do so. Ofri
admitted to herself that she wouldn’t be surprised if it didn’t happen. “But I
think, or at least hope, that I will no longer view Nazma Uddin as a personal
torment. Azina has cured me of that.”25
 Among the aspirations of those who choose a career in medicine is the
desire to care for the ill and injured. Because medicine in our society is
generally thought of in heroic terms, it should come as no surprise that for
medical students and trainees the prevailing image of what it means to care
for the sick should be that of curing disease, saving lives, rescuing patients. It
is a noble sentiment but one that is out of sync with the typical trajectory of
illness in modern societies where chronic illness is the norm.

Case Study: Danielle Ofri’s Incidental Findings

In the following passage, Danielle Ofri recounts her thoughts upon leaving the hospital
with her husband after giving birth to her first child. The trip to the hospital has already
been more confusing than Ofri, a doctor herself, could have imagined, and, on top of
that, she has been informed that her child is missing an artery. She has been told that this
is “a normal anatomical variant,” an “incidental finding”; but as she reflects on her
experience, she finds herself thinking differently.
“We walk out into the sunlight, stepping gingerly since I’m a little sore. But I’m more
shaken than sore. I reflect back on how discombobulated I’d become from the simple act
of getting lost this morning. How many patients do I send for procedures, many of
whom have little education or command of English? How many have wandered the
hallways, holding up their referral forms to strangers, hoping someone will have the
knowledge and the patience to help them out? How many of my patients give up in
frustration and simply go home? I’d never thought about how hard it could be just to get
there.
And how do we convey mildly bad news? We obviously try to be careful about the
big bad news – cancer, HIV, Alzheimer’s disease – with sensitive, empathic discussions.
But what about the incidental findings – the bit of gastritis seen during an endoscopy, the
benign calcification noted on a mammogram, the simple ovarian cyst picked up on a
sonogram. For us in the medical profession, these are small potatoes, hardly worth much
thought given the more serious issues we must face with our sicker patients. But as I
learned today, there is no such thing as incidental to a patient. Nothing is incidental. The
location of the room is not incidental. The “normal anatomical variant” is not incidental.
The “little pinch and a tiny bit of pressure” is not incidental. The frigid room and skimpy
gowns are not incidental. I want to announce it to the receptionists and the radiologist
and the obstetrician and the gray-brained designers of this infernal building. “I am not
incidental!” – I want to enunciate every syllable. I want it to echo down the sterile
carpeted corridors.
I am not incidental.

But I am now wiser.”26

1. What does Ofri mean when she says that “there is no such thing as incidental to
a patient”? Come up with a list of things that might seem “incidental” to a
patient, but that, on closer inspection, turn out to be quite significant.
 2. How does Ofri’s own experience as a patient make her wiser? Have you had
any experiences as a patient or caregiver that have made you wiser?
3. Anatole Broyard has said that he wants a doctor with “sensibility.” What sort of
“sensibility” does Ofri seem to have? What sort of “sensibility” do you want
your doctor to have?

Pauline Chen
Looking back from mid-career at her initiation into the medical profession,
transplant surgeon Pauline Chen writes, “From the moment I had begun to
contemplate this career path some fifteen years earlier, I knew that I would
want to use my profession to help people. Most of my classmates were no
different ... we were for the most part determined to learn how to save lives.
What many of us did not realize was that despite those dreams, our
profession would require us to live among the dying. Death, more than life,
would become the constant in our lives.”27 Setting out from this insight, Chen
begins to reflect on her experience with this “constant” and on the ways she
learned to deal with it.
Beginning one’s formal medical education with the dissection of a human
cadaver has long been recognized as an emotionally fraught experience. Chen
remembers it as the “first lesson in disengaging from the personal ...
suppressing the fundamental and very human fear of death.”28 For her, this
first phase of disengagement was facilitated by her fascination with all there
was to learn about the intricacies of the human body, and by the rigors of
memorizing anatomic principles and Latin terms, and practicing proper
dissection technique. The process of disengagement accelerates during third-
year clerkships as students are inducted into the culture of clinical medicine
with its distinctive attitudes and behaviors, including attitudes about death
and behaviors in encounters with dying patients and their families.
Experiences with patients dying or lingering near death commonly elicit
the seemingly paradoxical clinical response of arm’s-length solicitude, for
which sociologist Renée Fox coined the term “detached concern.”29 Try as
she might to adopt such a posture, Chen found it impossible to treat death as
only a clinical event. “In my mind, dying had as much to do with fate as with
biology .... That great passing of life was too sacred; it was nearly magical.
Death was an immutable moment in time, locked up as much in our particular
destiny as in the time and date of our birth.”30
Throughout her years of clinical education, from medical school through
residency and fellowship training, Chen assiduously strove to become an
ever-more superbly skilled surgeon. But beyond that, without guidance or
support, she felt unschooled in how to care for patients near the end of their
lives. What she had were her own experiences – some painful, others
instructive – and it was to these experiences and the perceptions and insights
they evoked that she began to pay close attention.
Max was only a few months old when Chen met him during her
transplantation and liver surgery fellowship. Max had developed a life-
threatening condition in utero that left his intestines twisted and starved of
blood supply. Immediately following his delivery by cesarean section,
pediatric surgeons operated, removing most of his bowel. Of necessity, Max
was fed intravenously, which led to numerous complications, including liver
failure. At ten months of age, Max received a liver and small bowel
transplant. Two months later, he was back in the pediatric intensive care unit
teetering between life-threatening infections and organ rejection.
With the attending surgeon, who was relentlessly dedicated to sustaining
the transplant and saving Max, Chen became deeply involved in the team’s
all-out effort to rescue the child. A month later, after almost a dozen
additional surgeries, Max died of a raging fungal infection. Having
experienced firsthand the damage can be done by heroic efforts and fear of
failure, Chen adopts a tempered view of a single-minded commitment to
cure.
There comes a point in complex cases such as Max’s when additional
interventions may cause more harm than good ... or only prolong dying.
Discerning when that point has been reached is difficult but is nonetheless a
key component in sophisticated clinical judgment. It involves a forthright,
humane conversation with patients and, where appropriate, with loved ones,
about when enough is enough. When is the flame no longer worth the candle,
the suffering to be endured too burdensome to bear? Certainly, addressing
this question requires medical expertise. But it is fundamentally an existential
question, one that draws on fundamental beliefs about life and death, and
meaning and suffering, and that therefore can appropriately be answered only
by those who will live with, or bear up under, or die from, whatever decision
is made.
By the time Chen met Alfred, a sixty-five-year-old businessman who had
been diagnosed with bile duct cancer who wanted a second opinion about the
feasibility of a curative operation, his tumor had spread beyond his liver and
was inoperable. During his brief hospital stay, Alfred told Chen about a
dream he had had in which he was being enclosed in a brick-like box from
which he could not escape. “I’m going to try chemotherapy,” he told Chen.
“When the time comes, I want to be at home and be comfortable and with my
family .... but right now, I don’t want to be passive in my box.”31
Following six months of chemotherapy at a different hospital, Alfred’s
wife, Judy, brought her husband back to Chen. Alfred’s condition had
worsened dramatically. He was confused. His face was wasted, his belly
bloated with fluid, and his jaundice unresolved. “Looking at Alfred, I knew
that we could transfer him into the intensive care unit; put tubes into his
mouth, nose, bladder, and rectum; hook him up to a ventilator; and probably
cure his confusion. But he was dying and any remedy would be temporary.”32
Alfred appeared moribund, occasionally rousing to make nonsensical
mumbling sounds before dropping off again. With Judy at her side, Chen
knelt at Alfred’s bedside, “so that my face was close to his,” and said, “Mr.
Lipstein ... we can either take you to the intensive care unit or we can let you
go home. I’m not sure how much longer we have, but I want to know what
you want.” Not expecting Alfred to respond, Chen was startled when he
opened his eyes, looked straight at her and said in a deep, lucid voice, “Dr.
Chen ... Let me go home,” and lapsed back into semi-consciousness.32
Chen contacted hospice and arranged for Alfred to be taken to his home
where he died one week later. She learned of his death in a phone call from
Alfred’s brother-in-law. Chen recalls feeling the wave of helplessness rising
in her chest that she always experienced upon hearing of the death of one of
her patients. “I wondered silently why I still could not save my patient
despite all the knowledge and training and technology. I began to speak,
saying what I always did with grieving loved ones. I wish I could have cured
him. I wish I could have done more.” But then she heard Alfred’s brother-in-
law thanking her for helping Alfred die at home surrounded by his family.
“‘You know, Dr. Chen,’ he said, ‘it was just as he had wished.’ It was then I
realized that I had done more. I had comforted my patient and his family. I
had eased their suffering. I had been present for them during life and despite
death. I had caught a glimpse of the doctor I could become.”33
In listening for patients’ yearnings beyond their chief complaints, Kate
Scannell came to an appreciation of the deeper meaning of “help me, doctor.”
With the dawning of the insight that, no matter how occasionally frustrating a
doctor-patient encounter might be, the patient is the one in need, Danielle
Ofri learned humility. And in realizing that “doing more” need not always
mean more medical interventions, Pauline Chen discovered the power of
comfort and care.

Conclusion
In “The Patient Examines the Doctor,” an essay composed in the months
between his prostate cancer diagnosis and his death, literary critic Anatole
Broyard (1920–1990) made this intriguing claim: “I want a doctor with a
sensibility. And that seems almost like an oxymoron, a contradiction in
terms. A doctor is a man of science.” But Broyard was disinclined to accept
as necessary the supposed contradiction inherent in using “sensibility” and
“science” in the same breath. He goes on to say, “Imagine having Chekhov,
who was a doctor, for your doctor. Imagine having William Carlos Williams,
who was a poet, or Walker Percy, who’s a novelist, for your doctor. Imagine
having Rabelais, who was a doctor, as your physician.”34
These doctor-writers were men of science and sensibility. Today, in
English and American parlance, we tend to associate the term “sensibility”
solely with aesthetics. But it was not always so. Predating what T. S. Eliot
(1888–1965) dubbed a dissociation of sensibility, a supposed disjunction
between reason and emotion, sensibility signified a general perceptiveness
and responsiveness irreducible to either thought or feeling but combining
them in a single way of being. It is this way of being, now transposed into the
realm of doctoring, to which the physicians whose work we have sampled
seem to be aspiring – attentiveness to the patient’s illness experience and life
world as well as the patient’s ailing body.
Underlying the soul-searching evident in the writings of these physicians is
a desire to rethink what it takes to practice purposefully. Dissatisfied with a
description of doctoring limited to the acquisition of specialized scientific
knowledge and technical expertise, they seek a more capacious conception of
their craft.35 In caring for their patients, and then reflecting upon and writing
about their experience, they have discovered that humanistic medical practice
requires both a feeling intellect and personal engagement – in a word, a
sensibility.

Summation
This chapter explored some of the many doctor-writers who have reflected on
the practice of medicine and the qualities of a good doctor. Beginning with a
discussion of the merged scientific and humanistic sensibilities of these
writers, it examined the work of five prominent figures: William Carlos
Williams, Richard Selzer, Kate Scannell, Danielle Ofri, and Pauline Chen.
Then, with a focus on their plea that we attend to the patient’s illness
experience and life world as well as to the patient’s ailing body, it considered
how their work helps us to think about what it means to practice
purposefully. Overall, this chapter has emphasized that a greater attention to
the work of doctor-writers helps us not because it provides solutions to
difficult problems but because it illuminates those problems in vivid and
unique ways.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Think about your favorite doctor. What combination of his or her
attributes makes you feel most taken care of?
2. Anatole Broyard declared that he wants a doctor with a “sensibility.”
What is distinctive, in your opinion, about doctors who practice with
both science and “sensibility”?
3. Why do you think that these doctors wrote about their experiences?
What value might the act of writing have had for these doctors?
4. What recurring themes do you notice among the doctor-writers in this
 chapter?

Suggested Writing Exercise

Write a short essay on what Richard Selzer considers sacred about the
doctor’s vocation.

Further Reading
Anton Chekhov, Ward Number 6 and Other Stories
Oliver Sacks, The Man Who Mistook His Wife for a Hat: And Other
Clinical Tales
Richard Selzer, The Doctor Stories and Letters to A Young Doctor
Abraham Verghese, My Own Country: A Doctor’s Story of a Town and
its People in the Age of AIDS
William Carlos Williams, The Doctor Stories

Advanced Reading
Rafael Campo, The Poetry of Healing: A Doctor’s Education in
Empathy, Identity, and Desire
Carol Donley and Martin Kohn, eds., Recognitions: Doctors and Their
Stories
Michael La Combe, ed., On Being a Doctor 2: Voices of Physicians and
Patients
Danielle Ofri, Incidental Findings: Lessons from My Patients in the Art
of Medicine
John Stone, In the Country of Hearts: Journeys in the Art of Medicine

Journals
Literature and Medicine

Organizations and Groups

William Carlos Williams Society Online
http://wcwsociety.wordpress.com/
 12 Studying Medicine
As medicine becomes increasingly sophisticated, its technical sides and
human sides seem to be growing ever farther apart.1
– Ellen Fox

Abstract
This chapter provides an “insider’s view” of medical education since
the 1960s. Relying on the voices and writings of students and
reformers, it examines student protests against injustice and against a
dehumanizing education as well as a growing skepticism about an
emphasis on biomedical science and technology as adequate
preparation for clinical practice. Then, with a focus on the recent rise
in humanities courses and full-fledged medical humanities programs
in many medical schools, it considers how medical education is
adapting to meet the challenges of the twenty-first century.

Introduction
Chapter 3 provided a historical sketch of the contours of medical education
from antiquity through the twentieth century. Chapter 12 provides an
“insider’s view” of how studying medicine has been experienced by students
and trainees and viewed by reform minded educators in an era dominated by
a bioscience and technology ethos.
In the decades following the publication of the Flexner Report in1910,2
medical educators aspired to make medicine scientifically sound, and
virtually all medical curricula conformed to the Flexner model – two years of
basic science study followed by two years of clinical training – which
remained dominant for decades, and whose fundamental framework was not
seriously challenged for a century.
 Figure 12. Full-length side view of a skeleton contemplating a skull (Skeleton with
Skull) from ‘De Humani Corporis Fabrica’, page 164 (Liber I), 1534, Courtesy National
Library of Medicine.

If this were a person rather than a skeleton, with one hand resting on a human skull,
what might he or she be thinking? What if the image depicted a health care professional
resting his or her hand on the head of a patient? Rest your cheek on one hand, as the
skeleton does. If you then lay your other hand on any object within reach, what do you
feel?
If you replaced the skull with a plant or a rock, how would the skeleton’s relationship
with the object in hand be different? Because the skull is part of the skeleton, the image
could be seen as a visual representation of the Greek aphorism “Know thyself.”
Vesalius was concerned with improving the education of physicians, as was Abraham
Flexner, whose modern reforms are summarized in this chapter. By including this image,
how might Vesalius have been suggesting that knowledge of medicine involves more
than the study of anatomy?

Bioscience Education and Its Limits

By the 1950s, social scientists had begun to document some unintended
consequences of a single-minded focus on bioscience education. Their
studies revealed evidence of feelings of anxiety among many medical
students who agonized about what medical education was doing to their
capacity for fellow feeling, and who often coped by adopting cynical
attitudes about their medical school experience.3 Moreover, the bioscience
ethos of the post-Flexner years, when coupled with a technological
imperative that equated every technical advance with progress, came at the
expense of cultural learning about the human condition, existential
experiences of illness and injury, and the social contexts of sickness.4
In the 1960s, students across the country were restive and rebellious.
Medical students were no exception. Many of them found the medical school
regimen inattentive to and complicit in the injustices of the health care
delivery system in which care was considered a commodity rather than a
right. They were offended by the unspoken messages conveyed in the
informal, or “hidden curriculum,” which condoned attitudes and behaviors of
disregard, disdain, and callousness toward patients made doubly vulnerable
by sickness and poverty. These concerns persist to this day.5
The sense of moral unease resulting from such experiences is captured in a
poem penned by a medical student in Philadelphia at the time.

On Being Poor
Being poor is watching all the residents practice passing a laryngoscope
down your dead baby’s throat.
Being poor is being told in front of 115 people that you are a “veritable
museum of pathology.”
Being poor is coming to the emergency room at 10:30 a.m. with severe
pain and not being seen until 1:30 p.m. in the clinic.
Being poor is having four young men put their fingers in your vagina
and only one of them has his name end in M.D.
Being poor is having a med student stick your arm seven times
unsuccessfully while a staff physician stands by and watches.
Being poor is being called “stupid” because you do not have the sense to
feed your five kids more protein when you get only $3,100 a year.
Being poor is being afraid to go to the hospital because you do not want
to die.
– L. Kron6

Reflecting on a lacuna in his medical education, activist physician H. Jack

Geiger (1925–) recounted an incident that occurred in 1965 in Alabama
where he was working at a first-aid station during the civil rights
confrontations in Selma. An eleven-year-old girl was brought to the station
with a hot, swollen, and painful knee after having been caught up in a white
mob attack on black protesters. “Training and routine carried me through the
process of history and examination, treatment, and bandaging,” Geiger
recalled, “but as I worked I was seized with the most intense feeling that
these technical skills were deeply irrelevant to the real damage .... There was
little in my professional medical training, or within the usual professional
behaviors, that pointed the way toward being human in this situation, that is,
toward giving full recognition to the girl’s humanity .... Both the girl and her
knee needed care. My training to deal with the knee was excellent; my
training to deal with the interpersonal dynamics was fair. But my preparation
for understanding the social, racial, and political context – which were not
context but the very core of the pathology afflicting this girl – had to come
entirely from sources outside my professional training.”7
In the preface to the 2006 edition of his 1976 memoir of medical education,
White Coat, Clenched Fist: The Political Education of an American
Physician, pediatrician Fitzhugh Mullan (1942–) recalls how the world of
medicine looked when he went to medical school in the sixties. “One in ten
students in my medical school class was a woman. One in seventy-two was
black – and he came from Nigeria. The main functions of the Student
American Medical Association (SAMA) on campus was social, and the
American Medical Association was engaged in a last ditch effort to prevent
the enactment of Medicare to provide health insurance for the nation’s
elderly. A student did not have to arrive in medicine as a radical to be
troubled by the moral posture of the profession in the 1960s.”8
Mullan’s experience was emblematic of that of a cadre of likeminded and
similarly conscientious students in this era who committed themselves to
reform – who insisted that human values are a critical part of doctors’ ability
to care for patients, and that physicians have a responsibility to make the
health care system fairer and to contribute generally to the betterment of
society. A 1974 survey of physicians who had been student activists in
medical schools in the 1960s revealed that, to a great extent, these former
students continued to pursue their idealistic goals in their later practice.9
The 1970s marked the advent of more widespread concern about the shape
and direction of medical education. A growing number of medical educators
became critical of an education system that was evidently better at training
“disease technicians” than educating “thinking doctors.”10 By the 1980s a
veritable chorus of voices, within medicine and without, was expressing
skepticism about the sufficiency of a continuing emphasis on bioscience and
technology alone as adequate preparation for the practice of humanistic
medicine, and calling for the integration of cultural learning into premedical
and medical education and for explicit attention to moral conduct in
residency programs.11
Residency training came under special scrutiny in the early 1980s on the
heels of the publication of The House of God, a satirical novel by Samuel
Shem (1944–) based on his experience as an intern at a Harvard Medical
School hospital. The novel exposed the inhumane conditions of residency
training programs and the bad medical behaviors they engendered. It soon
achieved the status of a cult classic among medical students and residents, a
status it continues to enjoy.12
Jack Coulehan (1943–) and Peter C. Williams (1946–) observe that
medical students and young physicians struggle with the challenge of
reconciling medicine’s espousal of the importance of such virtues as empathy
and compassion with its tacit commitment to an ethic of objectivity and
detachment. They note that some students deal with this challenge by limiting
their professional identity to the notion of technical competence. Others
develop a broader conception encompassing a commitment to humane values
and to habits of moral introspection and reflection, which they strive to
appropriate and internalize in their attitudes and actions. It is this latter form
of professional self-understanding that the humanities aim to conceptualize
and cultivate.13

The Humanities and Experiential Learning

From the time that the first department of humanities in an American medical
school was established (at the Pennsylvania State University School of
Medicine at Hershey in 1969), humanistic studies began to be
programmatically introduced at selected medical schools around the country.
In addition, many individual faculty positions were created in medical
schools that lacked full-fledged humanities or ethics programs, so that by the
early 1980s the humanities had, in the words of Edmund D. Pellegrino
(1920–2013), one of the principal leaders of this movement, “established a
beachhead in an unpromising place, the medical school curriculum.”14
Related reforms and curricular innovations in recent decades have included
the development of special programs aimed at encouraging active, small-
group problem-based learning,15 improving cultural competence,16
encouraging moral growth and promoting professional behaviors,17 and
attending more carefully to what Renée C. Fox (1928–) aptly called “the
human condition of health professionals.”18 Many of these initiatives evolved
in response to perceived omissions and deficiencies: a lecture-based
curriculum glutted with ever-expanding quantities of scientific information,
substandard competence in relating to and communicating with patients and
colleagues, and unprofessional attitudes and behavior.
Interpersonal skills can be taught and learned, and attitudes may be
changed by raising awareness, but human values – personal values, moral
values – take shape slowly, over time, in response to one’s life experiences.
As noted earlier in this chapter, in medical school such indirect learning
experiences are a part of the hidden or informal curriculum wherein both
good behavior and bad are on display,19 examples of which are typified in the
following vignettes.
Medical school graduate Melanie M. Watkins recalls an experience she had
as an applicant visiting a medical school for an interview in the late 1990s.
One of the doctors giving a hospital tour remarked, “I really miss the days of
deliveries when a happy husband and wife looked forward to seeing their
baby. Now all we have are single women on Medicaid with four and five
children.” Watkins, a single black mother, remembers thinking, “Doesn’t he
know that single women may need even more support? Does he think that
none of them look forward to having their baby? Does he think that because
they cannot afford a camcorder to record the birth that it is any less
important?”20
No sooner had Karen C. Kim been admitted to medical school than she
began to entertain doubts about her decision because it seemed to her “that
many of the concerns that originally led me to medicine are simply not
valued by the medical establishment.” She was made to feel out of line when
she drew attention to the paucity of class time devoted to such issues as gun
violence, poverty, and racial disparities in health care, and the ethics of the
pharmaceutical industry. “With thirty hours a week of class time spent sitting
in a lecture hall looking at PowerPoint slides, who has the time? [W]ho wants
to spend extra time and energy caring about stuff we aren’t tested on?”21
From the vantage of her residency, Tista Ghosh remembers being anxious
and agitated on the first day of her surgery rotation with “Dr. Snead,” whose
reputation for gruffness and volatile temper had preceded him. When he
appeared that day, Dr. Snead sized up the students from head to toe, barked
an order at each of the three male students on the rotation, then turned to
Ghosh. “‘What’s the matter, honey? You nervous?’ A sarcastic smile on his
lips. ‘The rest of you, follow your resident to the wards. But you, sweetheart,
you’re coming with me. We’re going to the OR.’” Snead’s misogyny knew
no bounds. His browbeating was relentless, and his patronizing remarks were
humiliating and demeaning. When it was Ghosh’s turn to answer a question,
Snead would often pass over her and ask one of the male students because the
question “might be too hard for you, sweetheart.” Looking back on her third
year, Ghosh found that she “had become hardened and jaded by the so-called
learning experience of clinical rotations. Did fear, discomfort, and
intimidation really enhance a student’s educational environment? Apparently
they’re supposed to, I often thought cynically.”22
David Hellerstein recalls an experience from his third year in medical
school that left him feeling embarrassed, disturbed, and disappointed. A
young woman had come to the gynecology clinic complaining of chronic
pelvic pain. After listening to the information the student had gathered during
the patient interview, Hellerstein’s teacher Dr. Snarr (not his real name)
dismissed it as nonsense and said, “She couldn’t possibly be feeling that kind
of pain.” The novice and the senior physician then entered the examining
room to do a pelvic exam. Though a novice, Hellerstein considered himself
reasonably good technically, having spent the past month working on his ob-
gyn rotation. When he began the manual exam, the patient screamed and slid
up on the table. Hellerstein desisted and, sweating now, promised to try
again, more gently. This time the patient didn’t scream, only breathed deeply,
but the student was unable to feel anything. When Dr. Snarr took over, the
woman screamed and writhed. Snarr withdrew and said, “All right, hon ....
Wipe yourself off; we’ll come back and see you in a minute.” Once outside,
Snarr told Hellerstein, “I don’t know why the heck she hurts .... Give her
some estrogen cream.” As the two debriefed before seeing the next patient,
Hellerstein, when asked what he thought the woman’s problem was,
mentioned a couple of possibilities but stopped short of saying what he really
thought, that his would-be teacher was insensitive and obtuse, “that he has no
sense of what he put her through .... I’m disappointed, too, but I’m not sure
why. Perhaps it’s that I wished he was a better doctor, a better role model ....
[What] I needed to know was how to be with patients, how to deal with the
feelings they evoked, how to make them feel at ease.”23
Physician-poet John Stone (1936–) recalls an experience of a different sort
from his student clinical rotation with the chairman of the department of
internal medicine. “One young woman, about my age and terribly ill with
cystic fibrosis, a respiratory ailment sure to be fatal, stands out in my memory
of rounds with Dr. Moore. He took a careful history from the girl, performed
an exemplary physical examination, all the while keeping the patient
completely at ease.” Afterwards, as the small retinue of students and their
teacher turned to go, Dr. Moore called their attention to a vase of flowers on
the patient’s bedside table. “Someone must love you very much,’ he said to
the young woman, ‘to send you those beautiful flowers.” “I realized, in that
instant,” Stone recalls, “that such a sensitive comment from a physician can
be an absolutely vital part of whatever healing there is to be done.” Such
small acts of thoughtfulness and comfort are at risk of becoming vanishingly
rare in the increasingly hustle-and-haste academic hospital environment
where teaching is seldom highly regarded or rewarded. In addition to Dr.
Moore’s parting gesture being one of profound courteousness and generosity
of spirit, student Stone remembered it years later as an absolutely vital part of
“what clinical skill really means, how to handle difficult moments with a
patient; in short, how it should be done.”24
As Stone’s experience attests, sometimes learning happens serendipitously,
as is also the case in a short story by nurse practitioner and writer Cortney
Davis (1945–).25 The story’s narrator sets the scene in the hospital room of
James Harris, an eighty-four-year-old dying man who is receiving comfort
measures. Shortly before midnight, Mr. Harris’s private duty nurse, Irene
McNamara, pages medical intern Peter Locke because she is concerned that
the patient’s pain is not being adequately controlled. We learn that, in
addition to being sleep deprived and in a foul mood, Locke “hated being
among the dying.”26 As Locke turns to leave after increasing Mr. Harris’s
morphine, the nurse asks him to help her scoot the patient up in bed. Peter
seemed unsure how to respond. “Just go around to the other side and we’ll
hoist him up a bit. He’s sliding.” This they do together, “their heads almost
touching.”27 Before leaving, Peter asks Irene if she thinks Mr. Harris will die
this night, adding “I’ve never pronounced anyone before.”28
When Peter returns a couple of hours later, he finds Irene washing and
massaging Mr. Harris’s back and wonders why she bothers. “Massage helps.
Even if it doesn’t, it lets Mr. Harris know I’m here,” she explains.29 Peter sits
down and the two begin to talk about Mr. Harris’s family and what he did for
a living. In the course of this conversation, Peter mentions his grandfather
who died when he was Mr. Harris’s age. Irene asks Peter if he has ever seen
anyone die. “Not really,” he replies.30 Irene continues to busy herself with
making sure Mr. Harris is comfortable. Raising her voice, she says, “Jim,
your doctor, Peter, is here with us again. He called his grandfather Poppy.”
Then “She looked at Peter as if to say, your turn.” Peter begins haltingly,
looking to Irene for cues, “Hello, Mr. Harris ... I’ve been working with your
internist for the last few weeks. I admitted you to the hospital.” Stroking Mr.
Harris’s hand, Irene says “You’re doing great, Jim ... ...Don’t worry. We’re
here with you.”31
Peter looks in once more as day breaks following another sleepless night
and sees Irene sitting on the bed next to Mr. Harris, holding his hand, and
chanting “ahhh” with each of his labored exhalations. “It sounded to him as if
they were singing together, or praying.”32 Peter asks Irene about the sound
she is making. She explains, “It’s called breathing with the patient .... It’s like
going part of the way them, a way of letting your life and their death
overlap.”33 Irene asks Peter if he’d like to try it. He is speechless. She assures
him that all he has to do is follow Jim’s lead. And before he can give it a
second thought, he begins. When Irene whispers, “this is it,” Peter becomes
anxious. “But as Mr. Harris let go a final, slow moan of air, Peter found
himself joining in, his deeper ah blending with Mr. Harris’s and Irene’s, the
three notes braiding around one another. Mr. Harris’s lips paled, his eyes
darkened, and together their three breaths rose into the room, fading out in
unison.”34
An experience such as this is likely to make a profound impression on a
novice physician. Nevertheless, without some context for understanding what
was learned, the impression risks becoming fleeting. The perverse practice of
disvaluing experience in medical training has long been recognized.35 In
addition to teaching practice skills, clinical education at all levels is a moral
apprenticeship. And experience is central to learning appropriate behavior.
Moral formation occurs in the process of observing an exemplary role model
such as Dr. Moore or Nurse McNamara in action, imitating the observed
behavior, appropriating it and internalizing it until it becomes second nature.
In order for student Stone and intern Locke to fully appreciate the
importance, for their patients and for themselves, of what they have
experienced, it must be brought to their awareness and legitimated. This is
best accomplished in small group humanities discussions in which
participants share meaningful clinical experiences and analyze what made
them so.
 Pediatrician Perri Klass writes of an exercise that is part of a course on
learning to do a proper patient interview. She takes a group of four first-year
students to the threshold of what she calls “the zone of the patient’s story.”
“Clinical medicine,” Klass wants these novices to appreciate, “is all about
stories.”36 It’s about “saying – and meaning – all over again that every
hospital room, every life, is full of stories more complicated and more
tangled than we can ever hope to tease out, but also making the commitment
to learn to ask the questions and listen carefully to the answers that may help
you understand, at least a little.”37
On the occasion she recounts, Klass took her charges to meet the father of
a two-year-old girl with a putative diagnosis of osteogenesis imperfecta,
commonly called brittle bone disease. After admiring the little girl who was
carefully positioned in a stroller with a cast on her broken leg – the seventh
such fracture in her short life – the students began to ask the father questions.
He willingly obliged, telling the students what it is like to be the parent of a
child who has a serious illness, one she will likely have to learn to live with.
He told them about a previous misdiagnosis at a different hospital. He told
them that he and his wife had a new baby who was at home with its mother
while he stayed at the hospital to keep his daughter company. As Klass
observed her students interacting with this man, she realized that they were
beginning to understand that they had “chosen a career which brings them
into the room with what is truly important in people’s lives, and sometimes
what is truly important is difficult and sad and even tragic.”38
Following the interview, the group went to a seminar room to reflect on
what they had experienced. Klass asked the students to think about all the
stories this father had told them – a genetic story, a biological story, a
medical system story, a child development story, a family story, an
immigration story, a day-by-day story, and “probably even a religious story,
since the father clearly identifies his faith as the only thing that keeps him
going, since he asked you over and over to pray for his family, and we should
never forget to think about where patients get their strength.”39 As Klass
listened to the students work through their encounter with this young father,
their teacher for the day, she saw with satisfaction that they had stepped over
the threshold into the zone of the patient’s story.
Opportunities provided in medical humanities programs to reflect openly
and think through such experiences as these can enhance what Suzanne
Poirier calls “emotional honesty,” a constructive alternative to the
suppression of troubling emotions and the stunting of moral growth.40
Historian of medical education Kenneth M. Ludmerer (1947–) has
observed that despite the fact that there are dedicated teachers on virtually
every medical faculty, formidable obstacles to good teaching are pervasive.
The incentive and reward structure in academic health systems favors
research and “clinical productivity.”41 Studying medicine, as Perri Klass’s
students learned, is serious business. Consequently, teaching is a serious
responsibility, in the humanities as in the sciences. Just as competent,
humane medical care depends significantly on the quality of patient-
physician relationships, so also does good teaching turn importantly on
meaningful interactions between teachers and students – around humanistic
ideas as well as scientific concepts. The concepts count, the ideas matter, and
discerning their appropriate use in practice has consequences in the lives of
the ill and injured. The success or failure of teaching and doctoring revolves
around human relationships – teacher and student, doctor with patient.42

Conclusion
Toward the end of Abraham Flexner’s (1866–1959) seminal report on
American medical education a century ago is this prescient and largely
overlooked passage: “[T]he practitioner deals with facts of two categories.
Chemistry, physics, biology enable him to apprehend one set; he needs a
different apperceptive and appreciative apparatus to deal with other, more
subtle elements. Specific preparation is in this direction much more difficult;
one must rely for the requisite insight and sympathy on a varied and
enlarging cultural experience. Such enlargement of the physician’s horizon is
otherwise important, for scientific progress has greatly modified his ethical
responsibility.”43
As we learned in Chapter 3, a new Carnegie Foundation Report on Medical
Education published its findings in 2010, a century after Flexner’s Report.
Not surprisingly, it confirmed what students and educational reformers had
been saying for decades. Medical training was not oriented toward student
learning and professional identity formation; it was too long and inflexible;
book learning and clinical learning were poorly coordinated; students had
little opportunity for holistic learning about patients’ experiences; and an
overly commercialized health care system undermined the broader
responsibilities for advocacy and civic engagement.
Medical humanities is designed to attack many of these problems. It
contributes to the study of medicine by encouraging a self-reflective
disposition. It teaches clarity of thinking and skill in reasoning about aspects
of life that elude quantification. It teaches elements of the arts of dialogue –
attending to patients, listening respectfully and responding appropriately. It
shapes medical sensibility so that doctors are better able to imagine what
patients are going through, what their illnesses mean to them, and what their
futures may hold. In sum, the humanities help stimulate the development of
professional identity. They contribute, in Flexner’s words, to the
“enlargement of the physician’s horizon” by cultivating personability,
intellectual curiosity, emotional honesty, social awareness, and the exercise
of sound judgment and moral imagination – virtues and skills indispensable
to good doctoring.

Summation
This chapter provided an “insider’s view” of medical education since the
1960s. Relying on the voices and writings of students and reformers, it
examined student protests against injustice and against a dehumanizing
education as well as a growing skepticism about an exclusive emphasis on
biomedical science and technology as adequate preparation for clinical
practice. Then, with a focus on the recent rise in humanities courses and full-
fledged medical humanities programs in many medical schools, it considered
how medical education is adapting to meet the challenges of the twenty-first
century. Overall, this chapter emphasized how, in an effort to counteract
trends of depersonalization, biological determinism, and mechanistic
medicine, medical education is evolving to help future physicians cultivate
social awareness and responsibility, personability, intellectual curiosity,
emotional honesty, and the exercise of sound judgment and moral
imagination.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. What are some of the benefits to studying medicine today?
2. What are some of the disadvantages to studying medicine today?
3. In “On Being Poor,” how does the author redefine poverty? What is
he trying to say about the state of medical education? Why do you
think that he chooses a poem to express these themes?
4. If you are a medical student, are there parts of your medical education
that you find unnecessary? Are there parts of your medical education
that you wish you could explore further? If you are an
undergraduate, what elements of your education are needed to
prepare you for an active life in the professional and/or public world?

Suggested Writing Exercises

Write, in as much concrete detail as you can, about your worst experience
studying medicine. Write for about fifteen minutes. Now write, for ten
minutes, about how it might shape your experiences in the future. If you are
an undergraduate, write about your best and worst experiences in college.
What changes might strengthen your education?

Suggested Viewing
Gross Anatomy (1989)
The Interns (1962)
Scrubs (television show, 2001–2010)

Further Reading
Lee Gutkind, ed., Becoming a Doctor: From Student to Specialist,
Doctor-Writers Share Their Experiences
Melvin Konner, Becoming a Doctor: A Journey of Initiation in Medical
School
 Suzanne Poirier, Doctors in the Making: Memoirs and Medical
Education
Kevin M. Takakuwa, Nick Rubashkin, and Karen E. Herzig, What I
Learned in Medical School: Personal Stories of Young Doctors

Advanced Reading
Kenneth M. Ludmerer, Learning to Heal: The Development of America
Medical Education
Kenneth M. Ludmerer, Time to Heal: American Medical Education from
the Turn of the Twentieth Century to the Era of Managed Care

Journals
International Journal of Medical Education
Journal of Continuing Education in the Health Professions
Medical Education

Organizations and Groups

The American Medical Student Association
http://www.amsa.org/AMSA/Homepage.aspx
Part III Philosophy and Medicine
 Part Overview
Philosophy and Medicine
Part 3 of this book deals with philosophy. What is philosophy? Philosophy,
or philosophia in Greek, literally means love of wisdom. One could say that
philosophy is the search for truth and that it seeks to explore ultimate and
fundamental questions: How do we know? What is reality? What is good?
How should we live? What does it mean to be human?
As an academic discipline, philosophy can be divided into several
branches: epistemology (the study of knowledge), logic (the study of
reasoning), metaphysics/ontology (the study of reality), ethics (the study of
values), and aesthetics (the study of beauty). There are various intellectual
traditions of philosophy. For example, there are regionally and historically
based traditions such as Greek stoicism, German idealism, American
pragmatism, and French existentialism. And within twentieth century
philosophy there is a great divide between continental and analytic
philosophy. This list is not exhaustive. Indeed, there are many other schools
of thought and methodological approaches, such as phenomenological,
structuralist, poststructuralist, materialist, feminist, and race-critical. And
there are major specialized subfields within philosophy, such as philosophy
of religion, philosophy of science, philosophy of language, and philosophy of
mind. Philosophy of medicine is another such subfield.
What is philosophy of medicine? Philosophy of medicine engages
traditional questions of philosophy in light of medical practice. In other
words, it examines medicine in light of epistemology, logic, metaphysics,
ethics, and aesthetics and in doing so asks questions such as:

What is health? What is disease?

What is death?
What are the goals of medicine?
How does one make clinical judgments? What counts as evidence in the
production of medical knowledge?
What is it like to be a doctor? What is it like to be a patient?
 In what ways does medical knowledge assume and (re)produce certain
power relationships?
How can one resolve ethical dilemmas in clinical practice?
To what extent is health care a right?

The chapters following in this section address, sometimes explicitly and other
times implicitly, these questions and more. It is worth noting that each of
these questions engage, in one way or another, what it means to flourish as a
human being, and how debate within philosophy of medicine follows from
one’s own core understanding of human flourishing.
“Any physician who goes beyond technique to contemplate the human
object of his ministrations,” Edmund Pellegrino writes, “must turn to the
humanities for those meanings which medical science alone cannot give.”1
Pellegrino (1920–2013) is the single most important person in the subfield of
philosophy of medicine. “Bioethics and the medical humanities, especially
their emergence in the latter part of the twentieth century,” H. Tristram
Engelhardt Jr. (1941–) and Fabrice Jotterand note, “cannot be understood
apart from Edmund D. Pellegrino.”2 Engelhardt and Jotterand suggest that he,
more than any other person, was able to connect the humanities to the
teaching and the practice of medicine in a substantive way. While others,
such as Abraham Flexner (1866–1959), were able to pay lip service to this
ideal in the early twentieth century, they were not able to articulate a robust
connection. But Pellegrino’s work, they observe, demonstrated that
“bioethics cannot be understood outside the context of the medical
humanities, and that the medical humanities cannot be understood outside the
context of the philosophy of medicine.”3 Pellegrino, in other words,
expanded the scope of bioethics beyond traditional moral questions in
bioethics (questions concerning, for example, abortion, end-of-life care, and
resource allocation) by arguing that (1) various disciplines and fields of the
humanities are needed to provide a concrete vision of human flourishing; and
(2) the discipline of philosophy provides an essential critical self-awareness
that directs humanistic inquiry.
No book on medical humanities would be complete without addressing
philosophy of medicine, and so we dedicate an entire section to the topic. As
with history and medicine and literature and medicine, there has been a
substantial amount of writing on philosophy and medicine during the latter
part of the twentieth century and the early decades of the twenty-first century.
This section introduces the reader to some of the most important topics and
influential thinkers.
 13 Ways of Knowing
To speak of clinical medicine as human medicine is no mere gloss: it
calls less for the ingenious conceptual grasp of episteme ... than for a
kind of discernment (phronesis) characteristic of the knowledge that
human beings have of other human beings – rooted in long experience,
cultivated in years of practice.
– Stephen Toulmin1

Abstract
This chapter explores the principal theories of knowledge that are at
work, and sometimes at odds, in the practice of medicine. Beginning
with a discussion of Cartesian rationalism and the ideal of objective
and dispassionate observation, it examines how theories of
interpretive, imaginative, empathic, and narrative knowledge can
supplement the knowledge derived from biomedical science. Then,
with a focus on clinical practice, it considers two vignettes in which
doctors move past the model of detached objectivity and
instrumentality toward a dialogical and collaborative attempt to
discern the elusive sources of patient suffering.

Introduction
What do we know and how do we know it? How can we be certain that what
we know is true? These are epistemological questions about the sources and
validity of knowledge. Two principal theories of knowledge, or ways of
knowing, are at work, and sometimes at odds, in medicine: the way of
biomedical science, and that of clinical practice.
A medical scientist wants to know about the human body, how it functions
and why it fails. For the scientist, the ideal is to study the body, its organs,
tissues, cells, and genes objectively and dispassionately and to make the
knowledge gained thereby available for use in the prevention and treatment
of disease. Medical knowledge derived from the biological sciences, although
indisputably indispensable, is insufficient for the practice of clinical
medicine. Something more is called for.2
Practicing medicine is inadequately understood when limited to selectively
applying the validated results of laboratory studies and clinical trials in
diagnosing and treating disease. It also involves engaging patients, one at a
time, in discerning what ails them and deciding what course of action is most
likely to lead to their betterment. In this process, the patient is not an object
but a fellow subject, and the way to understanding and healing is
intersubjective3 – relational, person to person, a joint venture. An exploration
of this latter way of knowing will be the focus of this chapter.

Rationalism
As we noted in Chapter 2, major changes began to occur at the dawn of the
modern era in the way European thinkers viewed human nature and the
human condition. Rene Descartes (1596–1650), commonly considered the
father of modern philosophy, derived his rationalist ideal of true knowledge
from geometry. Enlightenment thinkers of the eighteenth century further
advanced the idea that reason was the primary source of knowledge.
Particularly in science, the path to sure knowledge was believed to be through
reason’s objective gaze. The ideal of the scientist or scholar as disengaged
and rational – unencumbered by preconceptions and free from mere opinion –
and of mathematical certainty as the epitome of knowledge, came to seem
unquestionable.4 This Cartesianism became thoroughly integrated into
mainstream Western thought over the course of three centuries until it came
under critical scrutiny beginning in the mid-nineteenth century.5

Interpretive Understanding
Competing conceptions of knowledge were evolving as early as the
seventeenth century. Particularly notable were the views of rhetorician and
historian Giambattista Vico (1668–1744) for whom adopting mathematics as
a model for all knowledge was to restrict knowledge to the abstract and the
analytical, making it thus unsuited to understanding human life, which is
imbued with imagination, intuition, memory and feeling. According to Isaiah
Berlin (1909–1997), “Vico uncovered a species of knowing not previously
clearly discriminated – the idea of empathetic insight or intuitive sympathy, a
sense of knowing that is basic to all humane studies, the sense in which I
know what it is to be poor, to fight for a cause, to belong to a nation, to join
or abandon a church or a party, to feel nostalgia, terror, the omnipresence of a
god, to understand a gesture, a work of art, a joke, a man’s character .... It is
not a matter of ‘knowing that’. Nor is it like knowing how to ride a bicycle,
or to win a battle, or what to do in case of fire, or knowing a man’s name, or
a poem by heart .... [It] is the sort of knowing which participants in an
activity claim to possess as against mere observers.”6
This capacity for imagining what it may have been like to live in a bygone
place or time, or to appreciate what it may be like to walk in another person’s
shoes, yields understanding unlike the knowledge gained by empirical
observation or abstraction and analysis. Vico’s alternative epistemology
(called acquaintance-knowledge by some later scholars), was a mode of
perception best suited to understanding cultures and persons, ways of thought
and feeling and expression. Though obscured by the Cartesianism of his time,
it was taken up anew in modern humanistic and social scientific thought
when interest in the ancient practice of hermeneutics reemerged in the wake
of the demise of philosophic and scientific positivisms. Central to this
“interpretive turn” was a reevaluation of the concept of Verstehen, or
interpretive understanding, as it was developed by Wilhelm Dilthey (1833–
1911), Max Weber (1846–1920), Hans Georg Gadamer (1900–2002), Jürgen
Habermas (1929–), and Charles Taylor (1931–), among others.7
Knowledge in the form of interpretive understanding (also called,
variously, by different authors, “imaginative insight” or “imaginative
understanding,” and “empathic insight” or “empathic understanding”) is
especially relevant to the practice of medicine. It is inherently dialogical and
its principal focus is on seeing things from the perspective of another. In the
practice of patient care, this means paying careful attention to patients’
perceptions about what ails them. It entails not only observing patients from a
bioscientific perspective but also engaging them in order to discover how
things seem to them, and the significance, to them, of various metaphoric and
symbolic meanings attaching to their experience of illness.
Although modern medicine is generally unreflectively considered
“scientific,” it is so in no obvious way. Kathryn Montgomery (1939–)
observes that “The assumption that medicine is a science – a positivist what-
you-see-is-what-there-is representation of the physical world – passes almost
unexamined by physicians, patients, and society as a whole.” Curiously,
medicine continues to idealize this antiquated view of science as providing
incontrovertible facts and explanations of how things really work.
Montgomery calls this “medicine’s epistemological scotoma, a blindness of
which the knower is unaware.”8 In practice, however, medical practitioners
make selective use of generalized biomedical knowledge in the diagnosis and
treatment of individual instances of malady guided by narratively constructed
and conventionally agreed upon experiential knowledge.9
Whether interviewing a patient or making a chart entry, consulting a
colleague or presenting on hospital rounds, physicians practice according to
narrative conventions of the plot, taking prescribed steps from chief
complaint to diagnosis to prognosis and formulation of a plan of care, and
arrive at clinical judgments case by case informed by the collective wisdom
of the practice community and their own professional experience. Clinicians
use the findings of modern biomedical research in a practice that is
fundamentally experiential and interpretive. Clinical medicine’s
epistemology is not hypothetical and theoretical, as the term “scientific”
suggests, but engaged and practical.
As we learned in Chapter 12, medical students are taught to this day that
mastery of the rudiments of science, with adherence to principles of
objectivity, regularity, and certainty is the sine qua non of competence in
medicine. But when these students move from the study of the basic sciences
to hospital and clinic, the regularities and certainties of lecture hall and
laboratory are challenged by the variability and uncertainties of patient care.
Here, on the threshold of practice, a different way of knowing is called for,
the way of sympathetic insight, available by means of dialogue and
discernment, eventuating in human understanding and sound clinical
judgment, the raison d’être of clinical medicine.10
 Isaiah Berlin writes, echoing Giambattisa Vico (1668–1744), “A medical
chart or diagram is not the equivalent of a portrait such as a gifted novelist or
human being endowed with adequate insight – understanding – could form;
not equivalent not at all because it needs less skill or is less valuable for its
own purposes, but, because if it confines itself to publicly recordable facts
and generalizations attested by them, it must necessarily leave out of account
that vast number of small, constantly altering, evanescent colors, sense,
sounds, and the psychical equivalent of these, the half noticed, half inferred,
half gazed at, half unconsciously absorbed minutiae of behavior and thought
and feeling which are at once too numerous, too complex, too fine and too
indiscriminable from each other to be identified, named, ordered, recorded,
set forth in neutral scientific language.”
Moreover, Berlin observes, “there are among them pattern qualities ...
habits of thought and emotion, ways of looking at, reacting to, talking about
experiences which lie too close to us to be discriminated and classified – of
which we are not strictly aware as such, but which, nevertheless, we absorb
into our picture of what goes on, and the more sensitively and sharply aware
of them we are the more understanding is the insight we are rightly said to
possess. This is what understanding human beings largely consists in.”11
Berlin at times refers to such insight or understanding as a gift, suggesting
that it is something with which one simply is or is not endowed. On other
occasions, he speaks of it as an achievement, implying that it can be learned.
Perhaps it is best thought of as a capacity that can be cultivated, say, by a
physician, a capacity to imagine something of what it may be like to be a
patient sitting in the examining room or lying in a hospital bed. Not to know
for sure, of course, not to identify with another’s experience but to come to
some sense of what it may be like to be in that other person’s shoes. As when
Berlin writes, “When the Jews were enjoined in the Bible to protect strangers
‘for ye know the heart of a stranger, seeing ye were strangers in the land of
Egypt’, this knowledge is neither deductive, nor inductive, nor founded on
direct inspection, but akin to the ‘I know’ of ‘I know what it is to be hungry
and poor.’”12 Knowledge of this sort is essential to the healing arts and is
accessible through the cultivation of empathic insight.

Narrative Medicine
When we or someone we love falls ill, we begin to think about what it is like
compared to how it was and in relation to how we thought it was going to be,
and might still turn out to be. Thus do we try to locate ourselves in our story
as we understand it and seek the counsel of others to help us make sense of
this unexpected turn of events. We size up the situation in which we newly
find ourselves. We move through the situation guided by “readings” taken in
transit. As things change, or cues become unclear, we make midcourse
corrections in our evolving sense of what is going on. When messages seem
mixed, or obstacles to understanding crop up and the fluid motion of our lives
is seriously interrupted, we pause long enough to step back and figure out
why. And often, we seek the counsel of others, including doctors.
What a doctor is often expected to do in such an encounter is not only to
solve the problem posed by the patient’s chief complaint, but to follow a
story – about pain and discomfort, to be sure, but also about love, loss,
loyalty and the like. Such encounters begin with patients and doctors talking
with each other about what the hurt is like, why it hurts like that just now,
and what it might mean. Meaning is not latent in the patient’s symptoms
waiting to be made manifest and deciphered. It is located contextually and
articulated metaphorically in the give and take of dialogical discernment.
Such a dialogue does not proceed logically from premises to conclusion. As
with any story, one looks to the plausibility rather than the necessity of what
transpires. The emphasis is on contingency – uncertainty and probability –
and the interpretive task is to relate the current episode of illness to what has
happened in the story thus far and to what might be anticipated by
introducing a medical explanation of events or an unwelcome prognosis into
the narrative. “Following the story” is not so much a matter of trailing along
or keeping track but of becoming aware and getting the gist of the story as it
evolves. Nor is the doctor the “reader” and the patient the “text.”13 Rather the
two of them together are interpreters of the illness and joint authors of the
illness narrative.
Figure 13. Portrait of Dr. Samuel D. Gross (The Gross Clinic), 1875, Thomas Eakins
1844–1916, Courtesy of the Pennsylvania Academy of the Fine Arts, Philadelphia. Gift
of the Alumni Association to Jefferson Medical College in 1878 and purchased by the
Pennsylvania Academy of the Fine Arts and the Philadelphia Museum of Art in 2007
with the generous support of more than 3,400 donors.
 How many ways of knowing does this painting display? Is the scalpel, held by Dr.
Samuel Gross, a way of knowing? How has the artist drawn our attention to it? What is
the source of the light that strikes it?
What type of knowing do Gross’s assistant surgeons demonstrate as they retract and
explore the incision in the patient’s left thigh and anesthetize and stabilize the patient on
the table of the operating theater? If you could read the operative notes being recorded
by the clerk who sits just beyond the surgeon’s right shoulder, what might you learn,
even today?
Which students appear to have the discipline and perception to turn the opportunity to
see this operation into knowledge? How is their way of learning in 1875 different from
students learning today? Finally, what sort of knowing did Eakins demonstrate in
creating this work? Can you think of any elements of the actual scene that the artist was
not able to capture? Which elements might suggest that Eakins knew what it was to be a
surgeon, a student, a patient?
In order to develop a capacity for the type of human understanding described in this
chapter, what can we learn from Thomas Eakins’ ability to record, in Isaiah Berlin’s
words, “the minutiae of behavior and thought and feeling which are too numerous, too
complex ... to be set forth in neutral scientific language”?
For a detailed description and history of the painting, visit:
http://www.jefferson.edu/about/eakins/grossclinic.html.

This Is the Child

In his searching narrative of his son’s struggle with leukemia,14 Terry Pringle
(1947–) reflects, “As a child I always knew there were boundaries. A bully
would chase me, but would stop at the front door. My father might beat me,
but would stop short of killing me. We are subject to illness, but it can always
be cured. We are safe within these boundaries. And when I see that the
boundaries are imaginary, I feel sick ... I want my son to live. I have never
begged for anything in my adult life, but now I am begging.”15
Pringle introduces the reader to Dr. Pope, the Abilene pediatrician who is
to execute the medical treatment plan devised by Houston specialists. At first,
Dr. Pope appears to Brenda Pringle to be insufficiently concerned about her
son. When initial miscommunications between Houston and Abilene
regarding drug dosages occur, it is Eric’s mother, not the doctors, who sorts
things out. However, Dr. Pope persists, staying in touch with Eric and his
parents. “The words he speaks,” recalls Eric’s father, “aren’t nearly so
important as the effort he makes. We need at least one doctor to confirm that
Eric is important to him, that he is thinking as well as acting, that he
recognizes the treatment comes from a standardized schedule, but our son is
not a compilation of statistics and probable responses.”16
The relationship between Eric and Dr. Pope grows over time. Eric tells his
parents that Dr. Pope is as skilled as the specialists at doing spinal taps. On
another occasion, Eric objects to having to lie down to receive injections.
“‘Okay,’ the doctor says, ‘we’ll do it your way.’”17 When there is a choice of
physicians, Eric always wants Dr. Pope.
As the Pringles begin to run out of therapeutic options and decide to try an
experimental drug, they call their pediatrician. “He asks Brenda how we’re
doing. ‘Fine,’ she said. ‘Now tell me how you’re really doing.’ A friend tells
us later that the doctor had asked him if anyone had heard from us; he had
thought about us all day.”18 When it becomes clear that cure will not come,
Terry Pringle breaks down. “Once loosed, the sobs are unstoppable. I sit on
the coffee table with my head in my hands; Dr. Pope crosses the room and
pulls me up, embracing me. I understand instinctively the move he has made.
We don’t know each other well, he is as reserved as I am. And I know the
steps across the room were long ones for him, not only to me, but out of a
role that protects him. The doctor says, ‘Lord, this hurts.’”19
While the Pringles decide about next steps, the doctor listens. Do they want
Eric hospitalized? No, they wish to keep him home. From then until the end,
Dr. Pope attends Eric at home. When Brenda and Terry are overwhelmed by
the burden they bear, the doctor steps in, gently but steadily. It is a sad,
beautiful dance, with one partner leading for a time, and then the other. Terry
Pringle telephones Dr. Pope in the middle of an October night to tell him Eric
has died. “He is there within a few minutes and sits beside Eric for a long
time, sniffing and rubbing Eric’s arm and head. Before he checks for a
heartbeat, he performs the same ritual he always has – rubbing and blowing
on the stethoscope to warm it before touching it to Eric’s chest.”20
Of the dynamic typical of a relationship in which conversation partners
take each other seriously and hold each other in mutual regard, Martin Buber
(1878–1965) wrote: “what is essential does not take place in each of the
participants or in a neutral world which includes the two and all other things;
it takes place between them in the most precise sense, as it were in a
dimension which is accessible only to them.”21 This sense of connecting in
the space “in-between” can accompany experiences ordinary or grave, as, in
this story, in serious conversation between a sick child and his parents, and
their doctor about how things are going, what to expect, what to do next, and
how to hold up under the weight of the unthinkable. This hyphenated space
of connecting is a place of moral and spiritual encounter, with parties in the
relationship alternately speaking and listening, seeking mutually bearable
meaning by means of which an illness that threatens to fray or even sever the
storyline of this family’s life may be woven into the fabric of that life.
The lived experience of illness may usefully be approached as a “text”
requiring “reading,” ideally by a patient and a doctor comparing notes. On
this analogy, the patient-doctor relationship is collaborative, and the work of
healing commences not when the doctor settles on a diagnosis but when text
and readers converge in a common narrative. Thus construed, medical
practice is seen to be a storied practice. In place of the stainless-steel
apparatus and vital-sign monitors so central to rescue medicine, what is
required of the doctor in patient encounters is less often swift judgment and
deft action than a discerning reading of the situation at hand. What does the
ailment portend for the life of the patient? Is the suffering to be relieved or
endured, and in what measure? What can reasonably be expected to result
from this or that intervention? Are there fates worse than death? Answers to
such questions must be thought through and talked about case by case, person
to person. In this process of reflection and conversation, courses of action
evolve in which the right thing to do – the reasonable action to take – is not
the result of discursive reasoning but is an “ingredient conclusion” that is
embedded in and inseparable from the narrative as it unfolds.22 Discerning an
appropriate “fit” between selectively relevant generalized biomedical
knowledge and the unique human story of a particular patient is the mark of
sound clinical judgment.

A Vague Pain
Clinical care always begins with a patient’s story, which is an invitation to a
conversation – as in a case story recounted by gastroenterologist Richard
Weinberg, of his encounter with a patient in her mid-twenties who arrived at
his clinic with a complaint of chronic severe abdominal pain, a condition with
which she had lived since her mid-teens.23
 Her description of the pain was vague. She had been seen by several other
gastroenterologists, had undergone all the appropriate tests, and tried virtually
all the available medicines. What, Weinberg wondered, did she expect from
him? “As I questioned her, I studied her with growing fascination. She was
anxious and withdrawn, but nonetheless she projected a desperate courage,
like a cornered animal making a defiant last stand. She kept her gaze directed
downward, but every now and then I caught her staring at me intensely, as if
searching for something.”24 Because she seemed uncomfortable talking about
herself, Weinberg moved on to the family history. Her parents had emigrated
from Italy. Her father was a baker who had worked and saved to buy his own
shop, which she now managed. Her mother had died when she was a young
girl, and primary responsibility for her five siblings had fallen to her.
Following her mother’s example, she went to mass every morning. “But I
don’t take communion,” she volunteered.25
At a bit of a loss as to where the interview was headed, Weinberg
responded to this last bit of information by saying that cooking was his hobby
but that he was not much of a baker, which, he went on to say, was especially
unfortunate because he was addicted to Napoleons which he purchased at the
French Gourmet Bakery. “For the first time her eyes came alive. ‘I wouldn’t
feed the French Gourmet to my cat ... the French learned all they know about
baking from the Italians ....’”26 Her outburst took Weinberg by surprise but
disappeared as abruptly as it had appeared. The rest of the interview was yes
or no. Her physical exam was normal. Weinberg conjectured that she
probably was suffering from severe irritable bowel syndrome, which elicited
no response from her. He prescribed a bland diet and an antispasmodic and
asked her to come back in a month. Instead, she returned the following week
but was curiously uncommunicative. So Weinberg switched back to Italian
pastries, the one subject they so far had in common. As before, she became
animated, and he discovered how knowledgeable she was. She made no
mention of abdominal pain. He scheduled a return visit one month hence.
When, as before, she reappeared the following week, Weinberg noticed
dark rings under her eyes. “‘Are you sleeping well?’ I inquired. ‘No.’ ‘Why?’
‘Because I have a nightmare.’ ‘A nightmare, the same nightmare every
night?’ ‘Yes.’ ‘Can you tell me about it?’” With great effort, she describes a
lurid dream that could have only one meaning. “Were you ever sexually
assaulted? ‘Yes ... when I was fourteen.’”27 Whereupon she proceeded to
recount the grim details of being raped by her sister’s boyfriend, something
she had before now told no one. Weinberg consoled her as best he could, and
when she stopped sobbing, gently suggested that he refer her to a rape
counselor. She would not hear of it and told him she would talk to no one
else.
Despite feeling out of his depth, Weinberg scheduled weekly visits during
which he mostly listened to her explain the lengths to which she had gone to
try to expiate her guilt – giving up communion, giving up eating, then
secretly bingeing on pastries, purging herself until her stomach ached, and so
on, in a vicious cycle. Weinberg researched the link between rape and eating
disorders. He consulted a psychiatrist colleague. Nothing seemed to help –
except the visits themselves, which continued for several months. They
talked about her pain, and when that became difficult, they talked about
baking.
Over time, Weinberg noticed, subtle changes began to occur. She gained
some weight and began taking communion again. Her visits came at longer
intervals. Then, after a hiatus of three months, she reappeared, looking
healthy and strong to announce to Weinberg that she was going to quit the
bakery, spend the summer in Italy and, on her return, become a full-time
college student. “‘I wanted to see you before I left so I could bring you
these,’ she said, handing me a white cardboard box, carefully tied with a
bright ribbon. ‘Should I open it now?’ I asked. She nodded. Inside the box,
neatly resting on individual doilies, were six perfect Napoleons, the pastry
puffed high, the fondant a smooth glassy sheet, the chocolate chevrons
meticulously aligned. ‘I made these myself just for you,’ she said.”28 And
took her leave.
In this story, the offending cause of the patient’s complaint is not
discoverable by objective means. But having ruled out every objectively
plausible reason for the patient’s abdominal pain, Dr. Weinberg eschews the
subject-object mode of detached objectivity and instrumentality, shifting
instead to mutuality and dialogue in a collaborative attempt to discern the
elusive source of the patient’s suffering. The kind of knowledge gained in the
course of conversing with each other about what the ache in the abdomen is
like, and what it may portend, is not a knowing that or a knowing how but a
sympathetic sense of what it means to be in this vexing situation. This
knowledge, this shared sense – this “communion” – is what human
understanding largely consists of.
How did the physicians featured in the two vignettes presented herein
acquire the knowledge to conduct themselves in the way they did? Where did
Dr. Pope learn to be solicitous without being intrusive? How was he able to
express his own grief over losing Eric while remaining a steady companion to
Brenda and Terry Pringle in their grieving? What prompted Dr. Weinberg to
entertain the possibility that the anxious but defiant patient who had sought
him out might be “searching for something?” And how was he able to
imagine that it might be the visits themselves and the open-ended
conversations that went on there that were therapeutic?
We cannot know the answers to these questions regarding Dr. Pope and Dr.
Weinberg in particular. What we can say is that, as characters in these stories,
their responses to their patients contain clear evidence of humane knowledge
– capacious human understanding. There are numerous ways to acquire such
knowledge, such as emulating an admired person. However, one way
recommends itself to students aspiring to become health professionals,
namely, expansive exposure to, and deep dives into, works of imaginative
literature, not only for the pleasure of engaging lifelike characters in fictional
worlds (which is its own reward), but also for edification: for knowledge
gained in experiencing, at one remove, the way the world turns and what
makes people tick – acquainting oneself vicariously with the myriad ways
people live their lives, cherish what they cherish, suffer, make up their minds,
discover their desires, fill in the gaps, deal with adversity, and try to make
sense of the sometimes apparently senseless; and, not least, for self-
knowledge gained, as we readers see ourselves in others.

Conclusion
The meaning of malady emerges in a dialogue with the text of affliction. The
analogy between textual interpretation and ordinary conversation between
patients and doctors, though not exact, is suggestive. As the interpreter of a
novel, poem, or play imaginatively places the text being read for the sense it
makes in an illuminating context (a genre, say, or a parable), so also do
interpreters of the text of a life event closely read its lines – and between the
lines – searching for insight. In a therapeutic encounter, the doctor turns a
trained ear to a patient’s account of misfortune or malaise, places it in the
company of similar accounts he or she has heard before, and then attends not
only to what is said but also to what is unspoken, and to what may be
unspeakable, all the while conversing with the patient to test the fit of the
patient’s experience with similar, potentially telling, experiences in the
physician’s repertoire. This requires a capacity to imagine the illness
experience from the patient’s perspective, and an awareness of the
impossibility of finding a perfect fit. It is a kind of listening with a discerning
ear for narrative possibility, a capacity for empathic insight that yields
knowledge appropriate to understanding human experiences of illness.

Summation
This chapter explored the principal theories of knowledge that are at work,
and sometimes at odds, in the practice of medicine. Beginning with a
discussion of Cartesian rationalism and the ideal of objective and
dispassionate observation, it examined how theories of interpretive,
imaginative, empathic, and narrative knowledge can supplement the
knowledge derived from biomedical science. Then, with a focus on clinical
practice, it considered two vignettes in which doctors move past the model of
detached objectivity and instrumentality toward a dialogical, collaborative
attempt to discern the elusive sources of the patient suffering. Overall, this
chapter emphasized that meaning is not latent in the patient’s symptoms
waiting to be made manifest and deciphered, but is located contextually and
articulated metaphorically in the give and take of dialogical discernment.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Think about a time when you felt understood. What contributed to
this feeling?
2. How do you try to understand others when you talk to them? How do
you help them to understand you? What are the limits of
understanding?
 3. Think about your encounters with doctors. Was there ever a time
when you thought your doctor didn’t understand you? What did it
feel like? What, in your opinion, caused the problem?
4. Now think about your encounters with doctors again. Was there ever
a time when you felt particularly well understood? What did that feel
like? What, in your opinion, made the encounter work?

Suggested Writing Exercises

The epigraph to this chapter refers to the concept of phronesis, a Greek term
meaning “practical wisdom” or, to use Stephen Toulmin’s words, knowledge
“rooted in long experience” and “cultivated in years of practice.” Think about
something of which you have deep practical knowledge – a musical
instrument, perhaps, or a sport or a hobby. Then spend fifteen to twenty
minutes writing about how you put this knowledge into practice when you
are engaged in the activity.

Suggested Viewing
Healing Words: Poetry and Medicine (2008)
Worlds Apart: A Four-Part Series on Cross-Cultural Health Care
(2003)

Advanced Reading
Isaiah Berlin, The Hedgehog and the Fox
Richard J. Bernstein, Beyond Objectivism and Relativism: Science,
Hermeneutics, and Praxis
David R. Hiley, James F. Bohman, and Richard Shusterman, eds., The
Interpretive Turn: Philosophy, Science, Culture
Kathryn Montgomery Hunter, Doctors’ Stories: The Narrative Structure
of Medical Knowledge
Kathryn Montgomery, How Doctors Think: Clinical Judgment and the
Practice of Medicine
Richard Rorty, Philosophy and the Mirror of Nature
Charles Taylor, Sources of the Self: The Making of Modern Identity
Stephen Toulmin, Cosmopolis: The Hidden Agenda of Modernity
David Tracy, Plurality and Ambiguity: Hermeneutics, Religion, and
Hope
 14 Goals of Medicine
The relief of suffering is the fundamental goal of medicine.1
– Eric J. Cassell

Abstract
This chapter addresses some ways of thinking about the goals of
medicine. Beginning with a discussion of the two principal ways of
specifying medicine’s raison d’être – the social constructionist
approach and the essentialist approach – it examines how these two
seemingly incompatible approaches might be kept in balance. In
particular, it discusses a mid-1990s study by the Hastings Center
which found common ground between these two camps by pointing
toward four broad notions that can serve as guideposts along the path
toward determining modern medicine’s goals and limits. Then, with a
focus on enhancing human traits and end-of-life issues in America, it
considers how our understanding of the goals of medicine has
evolved in recent years.

Introduction
This chapter addresses the crisis of purpose occasioned by the proliferation of
medicine’s goals, beginning in the middle of the twentieth century. Two
examples – enhancing human traits and end-of-life care – will illustrate the
sorts of challenges faced by efforts to demarcate modern medicine’s
legitimate sphere of activity.
 Until the late 1940s, medicine in economically developed countries
consisted mostly of taking care of sick people using modest therapeutic
means. As Robert Martensen (1947–2013) observed, preoccupation with
medically managing the human body is of relatively recent origin. “Indeed,
aside from vaccines and a few antibiotics and hormones to control infections
and metabolic derangements like high blood sugar, the idea that anyone could
control desperate medical conditions has only arisen since World War II ....
When therapeutic modesty gave way to widespread new enthusiasm for
technologies of bodily control that began with the mid-1960s and took off in
the 1970s, the older way did not linger for long.”2
In the twenty-first century, due to the great array of goals and activities of
medicine, it is difficult to arrive at a coherent notion of its principal purposes.
Medicine is about curing disease, discovering new knowledge, developing
innovative technologies, defying death near the end of life, choosing children,
rescuing premature newborns, enhancing human traits, preventive health
maintenance, rehabilitation following accident or injury, and on and on. And
the pursuit of each of these goals involves interaction among various
institutions (hospitals, clinics, health science centers), government agencies
(National Institutes of Health, the Centers for Disease Control and
Prevention, Food and Drug Administration), and commercial enterprises
(pharmaceutical companies, device manufacturers, insurance conglomerates)
which often have competing goals of their own. It is an open question
whether clarity of purpose can offer alternatives to what has become an
unwieldy, expensive, and sometimes harmful “biomedical-industrial
complex.”3 Many would argue, however, that as medicine’s goals have
multiplied, its core values seem to have eroded.

Constructivism versus Essentialism

There are two standard ways of specifying medicine’s raison d’être – a social
constructionist approach, and an essentialist approach. The social
constructionist approach takes into account the diverse social factors and
cultural values that shape healing practices. Social constructionists hold that
medicine’s ends and purposes are externally determined and thus culturally
variable.4 According to the essentialist view, the goals of medicine are
derived internally from values inherent in the practice of medicine. The
essentialist considers such values as preventing and curing disease, relieving
pain, and mitigating suffering to be invariant or unchanging.5
Social constructivist and essentialist approaches to specifying medicine’s
goals are not necessarily incompatible. While advocates of one or the other
view may joust theoretically over their relative merits, it is reasonable in
practice to keep the two approaches in balance or otherwise in fruitful
contention where possible. This was the position taken by participants in an
international study project on the goals of medicine undertaken by the
Hastings Center in the mid-1990s. The project’s final report puts it this way:
“A medicine that has no inner direction or core values will be too easily
victimized and misused by society if it lacks the resources to resist
encroachment upon it .... Yet it is also naïve to think that medical values can
remain uninfluenced by society. Since doctors, health care personnel, and
patients will be part of society, it will never be possible to find a sharp line
between the institution of medicine and other social institutions.”6
The report called for dialogue between adherents of these two ways of
thinking about what medicine ought to be for – with one caveat: the risk to
medicine’s integrity and to patient well-being is greater when the balance of
these views tips too far in the direction of social construction.

Figure 14. Untitled (Moons), No. 4, 1998, Michael G. Golden 1959–, (Braille text
from work by James Baldwin, 1924–1987), Museum of Fine Arts, Houston, Bequest of
Mary Pat Golden © Michael Golden 1998.
 How might this drawing be interpreted to represent the opposing views of the goals of
medicine summarized in this chapter? How might what appears to be a hole, on the left,
represent the essentialist view that medicine’s goals are derived internally from core
values? Could the black disk on the opposite page represent the social constructionist
view, that the goals of medicine are applied from the outside?
Notice the background. The pattern of dots is braille, the tactile writing system
created for the blind. The artist, Michael Golden, took two pages from a braille book to
use as his canvas. Why would a visual artist incorporate braille pages in his work, since
most viewers could not be expected to read it?
On the other hand, a blind person who could read braille, running her fingers along
the rows of dot patterns, might not detect the hole or the disk because the disk and the
hole are superficial. Golden created the appearance of a hole by using powdered
charcoal to shade the outer circumference of a circle and to add a dark crescent of to
suggest depth. Likewise, the black disk on the opposite page is only powdered charcoal
applied directly to the braille sheet. There’s a French term for works like this, “trompe
l’oeil,” which is translated as “deceive the eye.” There’s an element of deception in most
works of art, most commonly the appearance of three-dimensional space on the two-
dimensional surface of a painting.
Now that you know the hole and disk are illusions, how might you use the drawing to
clarify the two perspectives on the goals of medicine?

Balancing Approaches
Over the course of four years of study and dialogue among essentialists and
social constructionists, the Hastings group, comprised of individuals from
humanities, biomedical sciences, clinical medicine, and social sciences, came
to a consensus around four broad notions that may serve as guideposts along
the path toward determining modern medicine’s goals and limits: (1) disease
prevention, and health maintenance and promotion; (2) relief of pain and
mitigation of suffering caused by disease or injury; (3) care and cure of those
with an ailment, and care for those who cannot be cured; and (4) avoidance of
premature death, and pursuit of a peaceful death.
First, disease prevention and health maintenance are valuable for
commonsense reasons. For example, as the public becomes knowledgeable
about the dangerous health implications of tobacco use, a great deal of
suffering and premature death is avoided. The same logic applies to
maintaining a healthy diet, practicing safe sex, and so on.7
 Second, avoidance of pain and suffering have long been among the main
reasons people seek medical care. However, physicians generally are not
prepared to respond adequately to pain of indeterminate physiological origin
or to mental anguish.8 Pain relief and the amelioration of suffering rank
among traditional goals of medicine, but they merit special emphasis,
especially in the United States, in view of continuing physician reluctance to
prescribe adequate analgesic medication for pain, resulting in unnecessary
suffering.9
Third, care and cure have figured historically among medicine’s defining
goals. But as scientific and technological methods of cure have risen to
prominence in post-industrial societies, caring has often become an
afterthought or given little more than lip service. This is an especially
troubling development in societies where the lives of people contending with
chronic diseases of aging can be made more livable with the aid of
knowledgeable and attentive practitioners. To restore a healthy balance
between curing and caring in modern social contexts requires a reassertion of
the importance of the virtue of caring.10
Fourth, avoiding premature death is an obvious core goal, while supporting
a peaceful death sometimes seems less so. Since the 1970s, emergency rooms
and intensive care units have become highly successful in saving acutely ill
patients from premature death. An unforeseen consequence of this success is
that dying patients and their families have come increasingly to view rescue
in the face of death as the optimal goal, even in circumstances where
additional life-prolonging efforts are demonstrably of no avail. And doctors
in these circumstances generally tend to consider death, when it comes, a
medical failure. These attitudes, and the practices engendered by them, are
changing so slowly that it remains important to affirm humane care of the
dying as a core value of modern medicine.

Enhancing Human Traits

The practice of medically enhancing human traits raises questions regarding
the legitimate limits of medicine. To enhance is to make something better
than it presently is, to improve it. But is it fair, say, for the parents of the
runner up in last year’s spelling bee to give their child a memory enhancing
drug in preparation for this year’s contest? The parents may see this simply as
a means of enhancing their child’s natural ability, ratcheting up her memory
capacity, a matter of degree rather than an artificial alteration in
consciousness. Questions of fairness aside, surely there is no harm in
augmenting ordinary human traits, for example, by taking prescription
medication to feel better if you only feel good most of the time. Or is there?11
And if one believes that such decisions are matters of individual choice, the
question remains: Does any of this appropriately belong within the purview
of medicine?
Is enhancement a legitimate goal of medicine? A plastic surgeon is
consulted by a person who has decided he wants to fly. Is it a legitimate
medical goal for the surgeon, as long as he has the means and skill, to create
“a marvel ... a person with animal parts – say, a tail or wings.”12 Why, or why
not? To cite less frivolous examples, if you feel unhappy with your body,
what would be wrong with asking a surgeon to change your appearance with
breast augmentations or a facelift?13 Are such enhancement techniques
analogous to “working out” and staying in shape, ways of achieving the
widely accepted goal of self-improvement? Does it matter that requests for
such interventions are unrelated to remediation of pathology? How should
surgeons respond?
To take an example other than pharmacological and surgical enhancement
techniques, do doctors have a legitimate role in the practice of prenatal sex
selection? As early as 1994, the ethics committee of the American Society for
Reproductive Medicine said “no,” arguing that medical involvement in sex
selection would likely lead to gender discrimination, and would also likely
eventuate in misuse of limited medical resources more appropriately utilized
in the treatment of infertility. The committee also expressed concern
regarding the likelihood that fertility specialists might be lured away from
treating patients with infertility into this more lucrative business.14 What the
committee did not mention is that the high cost of infertility treatment puts it
well beyond the reach of all but the affluent.15

Case Study: Sex Selection

You are a gynecologist specializing in infertility. A married couple in their late thirties
 comes to you for help. Not long ago, you helped the couple conceive and the wife
delivered a healthy baby girl, who is now four years old. This time they return asking for
your help in conceiving and selecting a male. They argue that they are running out of
time; that they desperately want a male child and their daughter wants a baby brother.
They see no problem in selecting the sex of the child.

1. What is your answer to the couple?

2. What reasons do you give for agreeing or not agreeing to help them select a
male baby?
3. Can you imagine a situation in which you would have responded differently?

What is medicine’s role, if any, in activities such as these? Recalling the

goals previously enumerated in this chapter, the relevant criteria are these: the
relief of pain and suffering caused by an ailment or injury, and the care and
cure of those with a malady. Using these criteria to distinguish “treatment”
from “enhancement” is analogous to the distinction between efficacious
treatment and futile measures in caring for gravely ill patients. When doctors
reach the outer limits of medicine’s ability to cure, they are, of course,
expected to continue to care utilizing interventions responsive to pain and
suffering. But they need not (ought not?) continue curative efforts.
Analogizing from this “futility” distinction, Eric Juengst argues that the
notion of enhancement functions similarly as a normative boundary concept.
Once medicine moves beyond treatment of pathology to enhancement, it
becomes just another service commodity in the commercial marketplace.16
Moreover, as Michael J. Sandel argues, “eugenic parenting is objectionable
because it expresses and entrenches a certain stance toward the world – a
stance of mastery and domination that fails to appreciate the gifted character
of human powers and achievements, and misses the part of freedom that
consists in a persisting negotiation with the given.”17

End-of-Life Care
Now we will turn our attention to the Hastings study group’s third and fourth
goals: care for those who cannot be cured, and the pursuit of a peaceful death
– this latter being what the project report identifies as “perhaps [the] most
humanly demanding responsibility of the physician.”18 What is the social
context for this claim?
The 1960s and 1970s witnessed a growing public controversy over
dissatisfaction with technologically managed rescue medicine for incurable
and irreversibly dying patients. Public interest reached fever pitch during the
long legal battle, journalistic coverage, and public debates culminating in the
New Jersey Supreme Court ruling in the Quinlan case.19 In the aftermath of
Quinlan, lawyers, philosophers, physicians, and religious studies scholars
concerned with questions of medical ethics, devoted special attention to
relations between patients, families, and health care professionals in end-of-
life care situations.
In 1978 Senator Edward Kennedy called for the establishment of “an
interdisciplinary committee of professionals ... to work together to try to give
the society guidance on some of the most difficult, complex, ethical and
moral problems of our time,”20 a call that led to the formation of the
President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research. Of several reports issued by the
commission during its four-year tenure, Deciding to Forego Life-Sustaining
Treatment (1983) was to become the most influential. As commissioner
Albert R. Jonsen (1931–) observes, this report “endorses the patient as the
most ‘suitably qualified decisionmaker,’ elaborates on various forms of proxy
decision-making for the incompetent (stressing, for the first time, the value of
‘durable power of attorney’ arrangements), and sets out the considerations for
resuscitation policy, for care of the permanently unconscious patient, and the
ill newborn.”21
In their influential 1979 book, Principles of Biomedical Ethics, Tom L.
Beauchamp (1939–) and James F. Childress (1940–) advocated an approach
to moral reasoning grounded in four principles, which they considered
fundamental to ethically sound biomedical decision making – autonomy,
nonmaleficence, beneficence, and justice [see Chapter 16].22 The widespread
adoption of the autonomy principle (the freedom to decide for oneself what
course of action is most consistent with one’s values and beliefs) and the
informed consent requirement provided an effective antidote to physician
paternalism (“doctor knows best”), prompted a fresh focus on patient
prerogatives, and became the gold standard for ethical end-of-life decision
making. However, although the affirmation of patient self-determination
proved salutary in decision making, it was an insufficient guide to end-of-life
care. There remained a need for thoughtful consideration of the existential
(personal, social, and spiritual) dimensions of dying, and of the meaning of
care near the end of life.23

Death and the Self

In contemporary American culture, mortality has become an offensive fact
and we are goaded into believing that there is nothing worse than death.
Driven by this belief, we empower medicine to do whatever it takes to defeat
death. Modern medicine – marvelously inventive and superbly equipped –
takes us at our word and launches an all-out assault. But the enemy is
unyielding and in the process of sustaining the attack, medicine neglects its
other aims. In girding itself for ever-more challenging feats of death defiance,
it often harms those it intends to help and squanders precious public and
private resources. Ingenuity and the best materiel money can buy can keep
death at bay only so long. Finally, medicine must fail, given the terms of the
bargain.
Daniel Callahan (1930–) observes that these terms are not etched in
stone.24 Instead of fighting death on every front, he asks, might it be possible
to pick our battles with a view not to defeating death but to shaping it to our
own ends? Callahan prods us to ponder big questions about life’s purposes in
the hope that, with some serviceable answers in hand, we may be able to put
death in perspective. “The relationship of death to the self, to the way we
think about our individual fate, is the most central issue.”25
What is this self that must die? In the culture of American individualism
and autonomy, the self is a sovereign self, a maker of rational choices. The
sovereign self sustains its identity through self-mastery and control of its
destiny, up to and including the conditions of its dying. But as Callahan and
others point out, at the end of life, the foolishness of this idea is revealed. It is
I myself, an embodied, mortal self, who must die; it is I who must at some
point relinquish control. If I have neglected to accommodate this important
detail in my understanding of myself and have instead authorized medicine to
fight death to the finish, my body is likely to become the scene of a doomed
final assault, the site of death’s dominion.
 On the question of the right relation of death to the self, Callahan
concludes that we must rethink the image of ourselves as sovereign. He
invokes instead “an image of the self that is more flexible, less manipulative,
more interdependent with others, more open to risk, a self appropriate to a
peaceful death.”26 Instead of vainly trying to control death, Callahan
recommends that we create conditions conducive to peaceful death, a death
marked by an awareness that one is dying, by the relative absence of life-
sustaining apparatus and, when possible, by the presence of family and
friends.
In addition to the need to rethink the self and its relation to death,
philosophers and theologians have reminded physicians of the moral
imperative to care for the dying. In his landmark book The Patient as Person
(1970), theologian Paul Ramsey (1913–1988) made a case for physicians’
obligation to help patients and families prepare for a peaceful death.27 “The
patient,” he argued, “has entered a covenant with the physician for his
complete care, not for continuing useless efforts to cure ....”28 He goes on,
“Just as it would be negligence to the sick to treat them as if they were about
to die, so it is another sort of ‘negligence’ to treat the dying as if they are
going to get well.”29 Moreover, “What doctors should do in the presence of
the process of dying is only a special case of what should be done to make a
human presence felt to the dying. Desertion is more choking than death, and
more feared. The chief problem of the dying is how not to die alone. To care,
if only to care, for the dying is, therefore, a medical moral imperative.”30

Preparing for the End of Life

Dying in familiar surroundings in the presence of those who know us best is
at the heart of the modern hospice movement, which originated in Britain,31
got its start in America in the mid-1970s32 and gained momentum from 1982
when hospice services became an entitlement under Medicare and the Joint
Commission on Accreditation of Health Care Organizations initiated hospice
accreditation (see Chapter 6). Over the ensuing twenty years, hospice care
became a part of mainstream medical practice, although it remains an open
question whether the hospice commitment to comfort care and attention to
patients’ values can be maintained in an era of cost cutting and profit
making.33
Along with the proliferation of hospice programs came renewed attention
to advance-care planning. Joan M. Teno and Joanne Lynn articulated a broad
vision of such planning that reached well beyond a bare-bones determination
of desired or declined life-prolonging interventions such as a do-not-
resuscitate or do-not-intubate order. “Our emphasis is on advance planning as
a means of communication and negotiation about the patient’s life goals and
the care that will be received in the final years of life .... Helping patients
make the right choices for themselves is an important part of medical practice
.... Physicians can’t offer choices only when a patient is dying; rather a
physician-patient relationship must be based on mutual understanding and
shared decision making throughout the patent’s clinical course.”34
The 1990s witnessed a new professional interest in palliative care whose
purpose is that of providing effective control of symptoms, especially pain
management. Its major themes include: attention to the personal, social, and
spiritual dimensions of dying; self-awareness on the part of caregivers
regarding their own views and feelings about dying and death; and awareness
of the relational nature of quality care in the final phase of life.35 Particularly
revealing of the need for better end-of-life care was a major multi-
institutional study funded by the Robert Wood Johnson Foundation designed
to improve end-of-life decision making and to reduce the frequency of
medically supported, painful and prolonged dying.36 The results were less
than gratifying. Despite vigorous efforts to improve communication between
doctors and patients, aggressive interventions aimed at prolonging life
generally continued, even in the face of futility.
Over time, the drive to improve end-of-life care gained momentum within
medicine. In 1997, the Institute of Medicine published a report calling for,
among other measures, the creation of a new subspecialty of palliative
medicine.37 The American Board of Medical Specialties approved the
creation of hospice and palliative care as a subspecialty in 2006, and in 2008,
the Accreditation Council for Graduate Medical Education approved program
requirements for fellowship training. An important related development was
the stance taken by the Joint Commission on Accreditation of Health Care
Organizations on the need for standards for appropriate pain management.38
Meanwhile, informative educational resources such as Handbook for
Mortals: Guidance for People Facing Serious Illness, and Guidelines for
Decisions on Life-Sustaining Treatment and Care Near the End of Life were
becoming available to the general public.39 An excellent four-part Public
Affairs Television series, “On Our Own Terms: Moyers on Dying,”
accompanied by a useful discussion guide, reached a sizable public audience
when it aired in 2000.40 And studies of the views of terminally ill patients
and their families challenged long-held assumptions and professional
practices.41

Conclusion
Our views about right and wrong, about what is permissible and what is
impermissible, are acquired (socially constructed). To the extent that they
embed themselves in our cultural habits and practices, they seem inherent and
indispensable (essential). As such, they provide direction and guidance for as
long as they seem serviceable or until they conflict with other equally valid
views.
When a customary medical practice, such as routinely prolonging the life
of dying patients, even in the face of futility, no longer seems sensible to
some, the question of goals arises. What is the purpose of the practice? To
answer this question requires that we examine the rationale for doing what
we had long considered the best way to treat dying patients, even though,
admittedly, we were harming them in the process. Essential values – rescue
the perishing, do no harm – are pitted against each other. At this point, we
must step back and ask: What are we trying to accomplish? What is the end
in view toward which end-of-life care practices should be directed?
Dialogue and debate of just this sort has been occurring in commissions,
committees, congregations, courts, and at countless bedsides of the dying
over the past four decades. As a result, practices that are reasonable and
sensible in preventing premature death are increasingly considered
inappropriate in caring for dying patients. Now that we are clear about the
goal of such care, we are finding better ways to reach it.
This story contains an object lesson in how we might proceed to clarify
other putative goals of medicine. Recalling Hans Jonas’s (1903–1993)
admonition to beware of “automatic utopianism” (see Chapter 16), there are
likely to be no universal principles and few bright lines demarcating
medicine’s legitimate scope and limits. Instead, thinking through and getting
clear about medicine’s ends and purposes will happen policy by policy,
practice by practice, and procedure by procedure in open dialogue and
debate.

Summation
This chapter explored some ways of thinking about the goals of medicine.
Beginning with a discussion of the two principal ways of specifying
medicine’s raison d’être – the social constructionist approach and the
essentialist approach – it examined how these two seemingly incompatible
approaches might be kept in balance. In particular, it discussed how a mid-
1990s study by the Hastings Center found common ground between these
two camps by pointing toward four broad notions that can serve as guideposts
along the path toward determining modern medicine’s goals and limits. Then,
with a focus on enhancing human traits and end-of-life issues in America, it
considered how our understanding of the goals of medicine has evolved in
recent years. Overall, though, this chapter attempted to emphasize that
defining the goals of medicine is a task still very much in progress.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. What are your goals when you visit a doctor? How do you
communicate these goals to your doctor?
2. What, in your opinion, are your doctor’s goals? How does your
doctor communicate these goals to you?
3. In the mid-1990s, the Hastings Center outlined four broad goals of
medicine: (1) disease prevention and health maintenance and
promotion; (2) relief of pain and mitigation of suffering caused by
disease or injury; (3) care and cure of those with an ailment, and care
for those who cannot be cured; and (4) avoidance of premature death
and the pursuit of a peaceful death. What do you think of these
 goals? What, given the opportunity, would you change?
4. How has technology influenced our thinking about the goals of
medicine? How do you think it will influence our thinking in the
future?

Suggested Writing Exercises

Over the past few decades, economically developed societies have entered an
unprecedented era of mass longevity and aging. As we have seen in this
chapter and elsewhere, however, mass longevity comes with a price tag, since
many older people now experience periods of disability, frailty, dementia,
and pain, as well as technologically prolonged deaths. Think about how we
care for the old and what goals – both spoken and unspoken – are at issue.
Then spend fifteen to twenty minutes writing about some of the challenges
that the issue of aging brings to the discussion about the goals of medicine.

Suggested Viewing
On Our Own Terms: Moyers on Dying (2000)

Further Reading
Daniel Callahan, False Hopes: Why America’s Quest for Perfect Health
is a Recipe for Failure
Robert Martensen, A Life Worth Living: A Doctor’s Reflections on
Illness in a High-tech Era

Advanced Reading
David Barnard, Anna Towers, Patricia Boston, and Yanna Lambrinidou,
Crossing Over: Narratives of Palliative Care
Robert A. Burt, Death Is That Man Taking Names: Intersections in
American Medicine, Law, and Culture
Eric J. Cassell, The Nature of Suffering and the Goals of Medicine
Jonathan Glover, Choosing Children: The Ethical Dilemmas of Genetic
 Intervention
Philip Kitcher, The Lives to Come: The Genetic Revolution and Human
Possibilities
John Passamore, The Perfectibility of Man
Michael J. Sandel, The Case Against Perfection: Ethics in the Age of
Genetic Engineering

Journals
American Journal of Hospice and Palliative Medicine
Journal of Medicine and Philosophy
Mortality
 15 Health and Disease
The conservation of health ... is without doubt the primary good and the
foundation of all other good of this life.1
– René Descartes

Health is the absence of disease.2

– Christopher Boorse

Health is a state of complete physical, mental, and social well-being,

and not merely the absence of disease or infirmity.3
– World Health Organization

Abstract
This chapter explores concepts of health and disease at the crossroads
of philosophy, history, and social science. Beginning with a
discussion of how these concepts have important consequences in our
everyday lives, it examines various holistic conceptions of health and
healing; the tension between biomedical and normative conceptions
of health and disease; and the special challenge posed by mental
illness. Then, with a focus on the rise of narrative medicine and the
recent distinction between “disease” and “illness,” it considers how
we might think about health and disease in the twenty-first century.

Introduction
We all want to be healthy. Yet rarely, if ever, do we stop to ask why we want
to be healthy or what we mean by health. As the French surgeon René
Leriche (1879–1955) put it in 1936, “Health is life lived in the silence of the
organs.”4 It is something we take for granted – until we lose it. Once the
organs break their blissful silence, we want to know why we are feverish,
exhausted, or in pain. That is, we are preoccupied with disease. Perhaps that
is why medical thought and practice focus more on disease than on health.
But, whatever the reasons, health is more desired than understood. And
disease is discussed more than health.
Concepts of health and disease have important consequences in everyday
life. They directly or indirectly affect the treatment and the goals of health
care; the assignment of social roles; the availability of health insurance and
distribution of health care resources; and social judgments about those who
are labeled healthy or sick. For the last century or so, Western society has
brought more and more of life under the purview of medicine. Many
behaviors and experiences that were previously understood in religious and
moral terms are now understood as medical problems. The implications of
this process of “medicalization” (see Chapter 2) are complex. For example, if
alcoholism, homosexuality, drug addiction, menopause, or even aging are
considered diseases, then they are more likely to be seen as worthy of
medical research and care. And those “afflicted” with these diseases are less
likely to be judged as morally deficient. On the other hand, they are subject to
the surveillance and control of medical management. They may also be
stigmatized as pathological and rendered less likely to take responsibility for
living own their lives without the assistance of medical experts.
This chapter discusses concepts of health and disease at the crossroads of
philosophy, history, and social science. That is, we will locate philosophical
debates about health and disease in the context of medicalization; the history
of disease; and social criticism of ideology and biopower. First, we discuss
holistic concepts of health along with their social and philosophical critics
who raise a number of key questions. Should health be construed merely as
the absence of disease? Or should it be defined in broader terms that include
meaning, purpose, and well-being? What is health good for? Is it possible to
be “against health”? Next, we analyze the primary philosophical debate –
between the biomedical and the normative models – about the nature of
disease, followed by a discussion of the crucial distinction between disease
and illness. Finally, we examine why mental health and mental illness pose
the greatest challenge to the view that there can be a single, universal concept
of either health or disease.

Holistic Concepts of Health and Healing

Holistic concepts of health have an enduring linguistic history. In English, the
word health originally meant wholeness and the verb to heal means to make
whole. Ancient Greece had two words that meant “health” – hygeia and euxia
– and both connoted a sense of living well and caring rightly for one’s body.
The work of healing, then, means restoring wholeness or function.
Holistic concepts of health are based on the intuitively appealing idea that
health is more than the absence of pathology or disease; that it involves
aspects of meaning and purpose that are essential to human flourishing. The
World Health Organization, formed after World War II, famously proclaimed
that health is “a state of complete, physical, mental, and social well-being,
and not merely the absence of disease or infirmity.”5 More recently, a Task
Force of the American Association of Medical Colleges (AAMC) claimed in
1999 that, “Health is not just the absence of disease but a state of well-being
that includes a sense that life has purpose and meaning.”6
The WHO’s utopian definition reflects the optimism of an era that aspired
to eradicate infectious disease. Most critics consider it inflated and
unrealistic.7 Not only does the WHO’s definition of health create an
impossible ideal, they argue, but it also creates disappointment among
physicians and patients. There is simply no way to measure “a state of
complete ... well-being” or to know when it has been achieved. In addition,
the WHO definition also supports the modern Western view that health is the
highest good – a troubling implication that the philosopher Daniel Callahan
(1930–) has nicely captured with the phrase “the tyranny of survival.”8
Holistic definitions have also been criticized for being too broad to guide
the formation of health policy. Part of the problem is the attempt to define
health positively (as a measure of well-being) rather than negatively (as the
absence of disease). Furthermore, the WHO defines all elements of social
well-being – wealth, legal capacity, political power, social prestige – as a part
of health. Is it always the case that wealthy people are healthier than the
poor? If health is a state of complete physical, mental, and social well-being,
can anyone ever be healthy? In contrast, if no one is truly healthy, is
everyone ill? Does health become a regulative ideal that we are compelled to
pursue but will always fail to achieve?
Despite these difficulties, there remains the enduring view that the
definition of health must include elements of meaning and purpose or
wholeness. For most of the twentieth century, a biomedical model of health
and disease prevailed. In this model, medicine consisted of scientific
diagnosis and treatment of pathology. But the last quarter of the twentieth
century witnessed a renewed emphasis on the art of medicine, on the
physician as healer, and on the religious and spiritual dimensions of health.
From this perspective, it is not sufficient simply to address disease. The
effective clinician relates to the patient as a whole person, and the quality of
that relationship affects the outcome of medical care. According to Edmund
Pellegrino (1920–2013), scientific knowledge is applied to the care of
specific individuals as “a right and good healing action.”9 Physician writers
such as Howard Brody and Eric Cassell (1928–) have claimed that healing –
the restoration or recreation of meaning, identity, or purpose – is the central
work of medicine.10 In his classic work The Nature of Suffering and the
Goals of Medicine, for example, Cassell defines healing as the restoration of
wholeness in a patient whose identity and social life have become
fragmented.11 In this view, the individual patient, not the doctor, stands in a
position of empowerment to define his or her health needs. The doctor
becomes a partner in finding ways to meet those needs.
Others have more recently called for a definition of health that, in addition
to the physical, mental, and social dimensions of human life, also includes the
animate and inanimate environment. The French philosopher and physician
Georges Canguilhem (1904–1995), for instance, has insisted that human
health cannot be separated from the health of our planet’s biodiversity.12
Human beings do not exist in a biological vacuum but just the opposite, in a
mutually dependent environment that includes microorganisms, insects,
animals, and our diverse ecosystem. Thanks to the science of climate change,
we now understand only too well the contingency of human well-being on
the “health” of the earth’s systems of energy exchange.13
In addition to critics from within clinical medicine, others have warned of
the social and cultural dangers of a preoccupation with health, however
defined. “Health,” declared Ivan Illich in the 1970s, “is the most cherished
and destructive certitude of the modern world. It is a most destructive
addiction.”14 This “addiction,” fed by for-profit medicine, hospitals,
pharmaceutical companies, self-help products, and a vast array of consumer
products, overwhelms critical thinking about health and the goals of
medicine. In the rush to stay youthful, healthy, and vigorous, consumers fail
to ask what health is for.
In order to avoid these pitfalls, Leon Kass (1939–) counsels us to avoid the
“false” goals of medicine. The first of these illusory goals, he argues, is the
insatiable drive toward happiness or pleasure.15 Kass attributes the false goal
of happiness to the open-ended character of some contemporary notions of
mental health, which consider frustration, anxiety, or unsatisfied desires to be
marks of ill health rather than part of the human condition. Another false goal
is “social adjustment” – creating a “healthy” society devoid of crime,
poverty, or laziness – that in Kass’s view lies outside the purview of doctors.
Responsibility for creating a “healthy society” and healthy lifestyles, he
argues, rests with policymakers, public health professionals, parents, clergy,
teachers, and judges. And finally, Kass argues that we should avoid the goal
of prolonging life indefinitely or escaping death altogether. To be alive and
healthy are not the same. We are born with two inescapable “diseases” –
aging and mortality – and, for Kass, medicine should be concerned with
reconciling itself to these conditions rather than transcending them.
Another line of criticism comes from those who warn against “health” as a
cultural enforcer of existing forms of domination. “Health,” as Jonathan
Metzl writes, “is a term replete with value judgments, hierarchies, and blind
assumptions that speak as much about power and privilege as they do about
well-being.”16 When we see someone smoking a cigarette and remark,
“smoking is bad for your health,” what do we really mean? Often, what we
really mean is “you are a bad person because you smoke.” Likewise, the
comment “Obesity is bad for your health” may be less about a medical
problem than about the implicit assumption that the person is lazy or weak of
will. These values are easily wrapped into public health advertisements. One
recent Michigan campaign, for instance, shows children left alone in homes
or in cars, where they are helplessly left to breathe the second-hand smoke of
their parents. “When you smoke around your kids,” the narrator explains,
“it’s like they’re smoking.”17 While the commercial rightly points out the
dangers of smoking, it links the act with personal traits – negligence,
irresponsibility – implying that the disease of smoking decays not only the
body but also the soul.
Indeed, many forms of popular media – television, film, magazines –
stealthily attach values to health that go unnoticed. Magazines such as
Health, Men’s Health, Women’s Health, Cosmopolitan, and many others all
share the assumption that health is intimately tied to a person’s appearance
and their sexual and athletic performance. They tout the importance of proper
body image under the label of a “healthy” lifestyle: nice skin, toned abs,
bulging biceps, even plastic surgery. In presenting these physical practices as
part of a healthy lifestyle (rather than as the product of cultural narcissism)
these and other “health” magazines actually construct certain bodies as
desirable and others as unwanted or repulsive.
 Figure 15. Winged Victory (Winged Woman Walking X), 1995, Stephen De Staebler
1933–2001, University of Houston, Moores Opera House, Courtesy Stephen De Staebler
Estate.

Could she fly? Why would someone with wings be striding forward as this figure
does? How could someone who appears to have suffered so much ruin appear so
forceful? Does the absence of the figure’s head suggest that it is mindless? Or could it
refer to ancient sculptures, which, over the centuries, have lost heads, arms, feet, and
other parts and yet still have the power to inspire us? Ancient sculptures often
represented human perfection. What sort of ideal does this figure represent?
Speaking of his sculpture, artist Stephen De Staebler said, “We are all wounded
survivors, alive but devastated selves, fragmented, isolated – the condition of modern
man. Art tries to restructure reality so that we can live with the suffering.” Is this the
way a physician, an orthopedist, for example, would describe a patient’s condition?
No physician or medical test could diagnose the diseases or cure the injuries this
figure displays. How does De Staebler’s figure fit into this chapter’s discussion of
disease, which happens to the body, and illness, which is the individual’s experience of
the disease?

Within this cultural climate, each new research result or technology raises
questions about the boundaries of health and disease and the scope of
medicine. We are less and less certain about what constitutes normalcy and
where to draw the line between health and disease. Such uncertainty is one
reason that some philosophers pursue purely scientific definitions of health.

Disease: The Biomedical Model and the Normative

Model
Among philosophers, there are two primary and competing understandings of
health and disease: a biomedical (or naturalist) model that, in pursuing a
value-free approach to health, seeks to transcend the relative judgments of a
particular culture or historical period; and a normative model that sees health
and disease as inseparable from social and culturally determined value
judgments. To review this debate, we will look at the argument of the
philosopher Christopher Boorse (1946–), the most prominent naturalist, and
the dissenting response of H. Tristram Englehardt Jr. (1941–), the most
prominent normativist.
 Boorse argues that the classification of human states as healthy or diseased
is an objective matter that depends solely on the biological facts of nature
rather than value judgments, social norms, or subjective considerations.18 As
a result, disease is defined without respect to the implications for its bearer –
whether the impact on an individual is good or bad, happiness generating or
otherwise. A state of disease is taken simply to be one that interferes with
proper or normal physiological functioning. Conversely, health is the absence
of disease or the presence of proper physiological functioning.
But what constitutes “proper functioning?” How does one measure a
deviation from an undefined norm? Boorse offers his “biostatistical theory”
as a value-free way of differentiating between healthy body states and
diseased body states.19 The premises of this theory are that a healthy
condition is normal, that disease is abnormal, and that the normal is derived
from a statistical average. As he puts it, “the average person – or at least the
average heart, lung, kidney, thyroid, etc. – must be normal, or we would have
no way of telling what the normal person or organ should be like.”20 Any
impairment of normal, natural functions – e.g., breathing, excretion, digestion
– is considered a state of disease. Normality is thus defined statistically along
a continuum of pathology and health.
In Boorse’s model, a person, organ, or biological system is healthy only if
it is functioning in a manner at or above the statistically normal level of
functioning for entities of that type. Similarly, an entity is diseased if it is
functioning at a level below the statistically normal level of functioning for
entities of that type. The disease label is applied once it falls more than a
certain distance below the population mean – a distance that, as Boorse
himself admits, is to some extent arbitrary, since the precise line between
disease and health cannot be determined.21 Nevertheless, Boorse declares that
his biostatistical model “looks in every way continuous with theory in
biology and the other natural sciences, and I believe it to be value-free.”22
Boorse acknowledges that his value-free theory of health is both
controversial and radical. In fact, most writers on the subject have challenged
the notion that disease can be understood in exclusively biological terms.23
The normativist model sees health as a concept that both describes factual
conditions and contains an assessment of whether these conditions are good
or bad. As H. Tristram Englehardt (1941–) puts it, referring to Boorse’s
biostatistical method: “Statistical and functional analysis is ultimately a
matter of values and, thus, invention – not only description.”24 In
Englehardt’s opinion, to see a phenomenon as a disease, deformity, or
disability is to see something wrong with it. While this judgment is not a
moral one – the question is not whether a person is good or bad, innocent or
evil – it nevertheless involves an aesthetic consideration of human form and
function. “That is a beautiful sunset” is a similar aesthetic judgment to “that
is an ugly body,” which has its roots in a sense of anatomical, physiological,
and psychological achievement and realization.25 Diseases, illnesses, and
deformities can thus be seen as failures to achieve an expected state.
In other words, we see the world through our social expectations and
through knowledge systems that are historically and culturally conditioned.
These contexts – the Western medical tradition, for example – shape our
understanding of conditions like heart disease, cancer, depression,
homosexuality, or AIDS. The consensus on what “counts” as disease – what
should be considered socially permissible or repugnant – changes radically
over time and across culture. Indeed, by classifying various conditions or
behaviors as disease, medicine has often disguised and reinforced existing
power relations and/or prevailing moral values. In the American South before
the Civil War, for example, Dr. Samuel A. Cartwright (1793–1863) described
the disease “drapetomania” as a mental illness that caused black slaves to flee
captivity.26 Slightly more than a century later, psychiatrists at Ionia State
Hospital in Michigan diagnosed blacks who espoused Civil Rights ideas with
schizophrenia.27 The political uses of disease concepts in psychiatry have
also been closely connected with repressive goals and political agendas of
certain governments. From the 1960s to the 1990s, for instance, the abuse of
psychiatry for political purposes was reported to be systematic in the Soviet
Union and other Eastern European countries.28
In addition, masturbation was once seen as a serious disease for which
castration, excision of the clitoris, and other invasive therapies were
employed. Individuals were even determined to have died of masturbation,
with postmortem findings “substantiating” this claim. Similarly,
homosexuality – which had long been considered morally repugnant – was
labeled as a psychiatric disease in the 1950s, when the first edition of the
American Psychiatric Association’s Diagnostic and Statistical Manual
(DSM) was published. Psychiatric classification was so closely aligned with
the unquestioned cultural definition of normal as heterosexual that gays and
lesbians were forced to hide their identities or face ostracism, discrimination,
and forced medical treatment. At psychiatric meetings in the 1950s and the
1960s, gay and lesbian psychiatrists met in secret and even risked their jobs if
they revealed their sexual orientation. Not until 1973 was homosexuality
declassified in the second edition of the DSM. As the examples of
drapetomania, masturbation, and homosexuality demonstrate, by framing
social or moral transgressions of cultural norms as a matter of scientific
objectivity or “fact,” societies have used concepts of disease to impose social
and political control.
Finally, the very act of naming something a disease or of calling a person
“sick” has profound social implications. Consider the reaction of a person
who has just been told that they have serious heart disease. Their experience
of lived reality is transformed. A brief shortness of breath walking up the
stairs, once dismissed as a normal moment of fatigue, now becomes a sign of
disease. Previously innocent activities – eating, sleeping, exercising,
recreation – now become serious matters of health, if not of life and death.
One must now take medication, pills, and conform to a new diet in order to
lower salt and cholesterol intake. The individual’s view of life and her role in
society has been fundamentally reshaped. Her life will never be the same.
To call a person “sick” then, is not only to inform her that she has a
disease; it may also cast her into a “sick role” in which certain societal
expectations are altered.29 Some of these might include: (1) excusing ill
individuals from some or all of their usual responsibilities (especially work);
(2) considering them not responsible for their illness, although their behavior
may have actually caused the disease; and/or (3) expecting them to seek out
experts to treat their illness.
Essentially, the normativist position asks, What values shape concepts of
health and disease, and to what extent are these concepts culturally
determined? Contrary to Boorse, Englehardt insists that a value-free account
of disease cannot exist because diseases are defined not only by their causes,
but also by effects that gain significance within a cultural context.
Nevertheless, the naturalist and the normativist positions need not always be
seen as mutually exclusive. Many examples of disease – e.g., ischemic
stroke, appendicitis, or cardiac arrest – suggest that value-laden meanings
may be less important than urgent diagnosis and treatment using the best
statistical evidence available.

The Special Case of Mental Illness

Mental health and mental illness pose the greatest challenge to the view that
there can be a single, universal concept of either health or disease. Broadly
speaking, the debate over mental illness concerns whether it is an objective
phenomenon rooted in the body or a subjective phenomenon rooted in the
mind, or various combinations of both. The idea that “insanity” is
fundamentally different from other illnesses – that it is a disease of the mind
rather than the body – is relatively new. Prior to the eighteenth century,
“insanity” or “melancholia” were considered bodily illnesses similar to most
other diseases.30 Thanks to Descartes’ (1596–1650) earlier famous dictum “I
think, therefore I am,” however, the mind was increasingly seen as distinct
from the body. In addition, the development of private madhouses and large
public asylums in the nineteenth century took the care of the mentally ill out
of the hands of general physicians. By the mid-twentieth century, the terms
“disease of the mind,” “disorder of the mind,” and “mental illness” were
commonplace.
The linguistic distinction between mental and physical illnesses remains
common today. Both laypersons and some medical professionals assume that,
as a disorder of the mind rather than the body, mental illness is fundamentally
different from other illness. There is a further, damaging assumption that the
symptoms of mental disorders are in some sense less “real” than those of
other disorders, which are rooted in physical, visible lesions of the body
rather than merely “in the mind.” From this perspective, it is tempting to
regard “mental illness” as evidence of a certain lack of moral fiber or to
assume that people with mere mental illnesses ought to be able to control
themselves and, through an act of willpower, “snap out of it.” For the
psychiatrist Thomas Szasz (1920–2012), who represents an extreme version
of this view, mental illness is merely a “myth.”31 What psychiatrists and
society call mental illness, claims Szasz, is actually the challenges of one’s
life – struggles that are altogether normal.
Most psychologists and scientists today, however, assert that there is no
separating mental from physical disease. As Nobel Laureate Eric Kandel
(1929–), professor of Bain Science at Columbia puts it: “All mental process
are brain processes. The brain is the organ of the mind. Where else could
[mental illness] be if not in the brain.... Schizophrenia is a disease like
pneumonia. Seeing it as a brain disorder destigmatizes it immediately.”32
Why, then, do we insist on distinguishing between mental and physical
illness? A compelling answer appears in the fourth edition of The Diagnostic
and Statistical Manual of Mental Disorders (DSM), the authoritative
publication of the American Psychiatric Association for more than sixty
years. The goal of the DSM is to provide a common language and standard
criteria for the classification of mental disorders. But finding precise
language to solve this problem remains elusive. As the authors of the DSM-
IV-TR put it:

[T]he term mental disorder unfortunately implies a distinction between

‘mental’ disorders and ‘physical’ disorders that is a reductionistic
anachronism of mind/body dualism. A compelling literature documents
that there is much ‘physical’ in ‘mental’ disorders and much ‘mental’ in
‘physical’ disorders. The problem raised by the term ‘mental disorders’
has been much clearer than its solution, and, unfortunately, the term
persists in the title of DSM-IV because we have no found an appropriate
substitute.33

Debates about naming and classifying “mental illness” persist even within
psychiatry and psychology – so much so that, when the fifth edition of the
DSM was released in 2013, biologically based psychiatrists criticized the
volume because it categorized diseases based on clusters of symptoms that
were not tied to brain malfunction and drug therapies aimed at correcting
them. Shortly afterward, the National Institute of Mental Health (NIMH)
announced that it would no longer fund research based on DSM symptom
clusters.
While neuropsychiatry improves our understanding of the biological basis
of major mental disorders, the distinction between brain and mind remains
essential. The brain may be the seat or cause of disease, but the human
experience of mental disease is always filtered and shaped by environment
and personal experience. Put another way, although there is an essential
neural substrate to mental functioning, the brain does not explain all of the
mind. In the next section, we will see that the distinction between “disease”
and “illness” can shed light on this problem in psychiatry and in other aspects
of medical care.
As contemporary psychiatrists and neuroscientists continue to shed light on
the biological connections between the body and the mind, a rich assortment
of personal writing about the experience of mental illness has emerged over
the past quarter century. These autobiographical works or “pathographies,”
discussed in Chapter 7, describe the experience of depression, bipolar
disease, and many other conditions. They break down cultural stereotypes by
describing illness in descriptive, personal ways. Novelist William Styron
(1925–2006), for instance, wrote his powerful memoir Darkness Visible in
the wake of his experience with terrible depression. He suggests that
depression, and mental illness in general, is wrongly dismissed by the public
as less severe or important than physical illness (see Chapter 7 for more
discussion of Styron). In An Unquiet Mind, Kay Jamison (1946–), a noted
psychiatrist and expert in bipolar disease, wrote a moving memoir about her
own experience of bipolar disease, also known as manic-depression. “Manic-
depression,” she writes, “distorts moods and thoughts, incites dreadful
behaviors, destroys the basis of rational thought, and too often erodes the
desire and will to live. It is an illness that is biological in its origins, yet one
that feels psychological in the experience of it; an illness that it unique is
conferring advantage and pleasure, yet one that brings in its wake almost
unendurable suffering and, not infrequently, suicide.”34
Elsewhere, Jamison has argued for an association between artistic
creativity and manic-depressive temperaments.35 Drawing from a rich
tradition of artists including George Byron (1788–1824), Herman Melville
(1819–1891), Ernest Hemingway (1899–1961), Virginia Woolf (1882–1941),
and many others, Jamison challenges the normative association of health as
positive and disease as negative. Mental illness can lead to great outpourings
of creativity; it can lead, even in the midst of great pain, to moments of
strange beauty. Russian novelist Fyodor Dostoevsky (1821–1881) captures
some of this complexity in The Idiot, where the epileptic protagonist Prince
Myshkin vacillates between interpreting his disease as a religious experience
and as a disease. Before the “sadness, spiritual darkness and oppression” that
accompanies an epileptic attack, Myshkin enjoys a few seconds of
inexpressible ecstasy during which “his mind and his heart were flooded with
extraordinary light; all his uneasiness, all his doubts, all his anxieties were
relieved at once; they were all merged in a lofty calm full of serene,
harmonious joy and hope.”36 Myshkin’s efforts to understand his pre-
epileptic sensations take the form of an unresolved contest between religious
and medical explanations, thus questioning any clear-cut line between health
and disease. As the great French writer Marcel Proust (1871–1922) put it –
speaking, perhaps, with himself in mind – “Everything great comes from
neurotics. They alone have founded religions and composed our
masterpieces.”37

Caring for the Person

Given the strident disagreement between various conceptions of health and
disease, and especially diseases of the brain, what common ground exists to
aid in care of the patient as person? Here, efforts to bridge the gulf between
biological science and human experience have been strengthened by the
philosophical distinction between “disease” and “illness.” According to Leon
Eisenberg (1922–2009), the difference between disease and illness can be
summed up in this way: “Patients suffer ‘illnesses’; physicians diagnose and
treat ‘diseases’ ... illnesses are experiences of disvalued changes in states of
being and in social function; diseases, in the scientific paradigm of modern
medicine, are abnormalities in the structure and function of body organs and
systems.38 Disease – what happens to the body – is understood through
science. Illness – what the person experiences – involves an engagement with
one’s body that is not only physiological, but also social and experiential.
The distinction between disease and illness is especially important in the
context of medical humanities. Without discounting the importance of the
biological, much of the field centers on how individuals experience health,
disease, suffering, and dying. As George Engel (1913–1999) insisted in 1980,
clinical medicine is not only biomedical but also psychological and social:
“The traditional biomedical view, that biological indices are the ultimate
criteria in defining disease, leads to the present paradox that some people
with positive laboratory findings are told that they are in need of treatment
when in fact they are feeling quite well, while others feeling sick reassured
that they are well, that is, they have no ‘disease.’”39 Health and illness, in
other words, cannot be understood with lab results alone but only by
attending to the patient’s larger psychological and social environment.
Engel’s biopsychosocial model of medicine is an attempt to bridge the gulf
between science and experience, which, as we noted in the introduction, is a
central function of medical humanities.
In addition to Engel’s path-breaking work, scholars and clinicians in the
last twenty years have come to see religion and spirituality as key factors in
understanding disease and facilitating health and healing. It may seem like
too much to try, as some have suggested, to expand Engel into a “bio-psycho-
social-spiritual” model, but there is no doubt, as we see in Section Four, that
religion and spirituality are central both to understanding health and disease
and to caring for patients.
From the perspective of caregiving, it is helpful for clinicians to remember
the distinction between treating diseases and caring for persons who are ill.
And it is here that patient narratives, which (as we saw in Chapter 4) had
been dismissed as subjective and unreliable since the nineteenth century, are
now understood as indispensable to good patient care. As Rita Charon
(1949–) noted, narrative competence – the ability to evoke and interpret a
patient’s verbal account of his or her illness, taking into account a host of
factors – is important both for diagnosing disease and for healing illness.40
Serious disease or illness is a major disruption in the story a patient tells
herself about her life. It is almost as if the patient says, “doc, my story’s
broke.”41 Helping her recover from illness involves helping her tell a new
story in the context of medical treatment (“I can bear the burden of dialysis.
As hard as it is, I will be able to live and enjoy my family while I wait for a
kidney transplant”). The doctor might help the patient to ask, How have I
been trained to think of my body, modern medicine, and doctors? How does
my disease involve my family, my job, or other levels of society? Providing
opportunities for conversations about such questions makes possible
emotional and spiritual healing, whether or not physical curing (to use
another important distinction) is possible.
Narrative medicine thus recognizes that a purely biomedical approach to
medicine cannot help a patient find meaning or healing in the face of serious,
disabling, or terminal disease. Along with their medical expertise, doctors can
listen to their patients in order to better understand and help reconstruct their
life stories. To return to the distinction previously mentioned, a narrow
attention to what happens to the body (disease) cannot wholly account for the
lived experiences of patients who struggle with illness. Ideally, treating
disease and caring for persons who are ill go hand in hand.
Philosophy of medicine, like philosophy in general, flourishes not by
giving correct answers but by engaging in fruitful debates. This is especially
true when considering definitions of health and disease. As we have seen,
health is more generally desired than understood and disease occupies more
of our personal, biomedical, and philosophical attention. Health can be
defined broadly, as in the WHO definition, or narrowly as in Boorse’s view
of health as the absence of disease. The central debate surrounding disease is
whether it can be defined universally, using value-free, biomedical, and
statistical terms, or whether concepts of disease cannot be separated from
historical and cultural norms and values. In the main, philosophers and
scholars have sided with the latter view. Mental illness confuses the whole
debate because its experiential, cultural, and historical components coexist
with an unquestionable neurological substrate, leading to the ongoing debate
about the relative influence of the “mental” and the “physical” in mental
illness. Finally, the distinction between “disease” (what happens to the body)
and “illness” (the individual’s experience of disease) offers a valuable bridge
between objective science and personal experience. This distinction reminds
physicians and health care professionals that attention to both the diseased
body and the ill person is the goal of humanistic care of the patient.

Summation
This chapter explored concepts of health and disease at the crossroads of
philosophy, history, and social science. Beginning with a discussion of how
these concepts have important consequences in our everyday lives, it
examined various holistic conceptions of health and healing; the tension
between biomedical and normative conceptions of health and disease; and the
special challenge posed by mental illness. Then, with a focus on recent
conceptual distinctions and the rise of narrative medicine, it considered how
we might think about health and disease in the twenty-first century. Overall,
this chapter emphasized that a narrow attention to what happens to the body
cannot wholly account for the lived experiences of patients who struggle with
illness, and that a greater awareness of various forms of health and disease
this can enhance both treatment of disease and care for individuals who are
ill.
Exercises for Critical Thinking and Character
Formation
Questions for Discussion
1. How do you know when you are sick? Is it when you feel sick or
when a doctor gives you a diagnosis?
2. Do you agree with Thomas Szasz that mental illness is a “myth”?
Why or why not?
3. Do you think that obesity is a disease? If so, who is responsible for its
prevention and cure?

Suggested Writing Exercise

Write, for about twenty minutes, on what it means to be healthy. After you
finish, reflect on your response. How does your own view compare to the
different understandings of health in the chapter? Does your definition tend to
be broad (like the WHO’s) or narrow (like Christopher Boorse’s)?

Suggested Viewing
The Biggest Loser (television series, 2004 – )

Further Reading
Fyodor Dostoevsky, The Idiot
Mark Haddon, The Curious Incident of the Dog in the Nighttime
Kay Jamison, An Unquiet Mind
Men’s Health (periodical)
William Styron, Darkness Visible

Advanced Reading
Christoper Boorse, “A Rebuttal on Health,” in What is Disease?
 Arthur Caplan, Tristram Englehardt, Jr., and James McCartney,
Concepts of Health and Disease: Interdisciplinary Perspectives
Eric Cassell, The Nature of Suffering and the Goals of Medicine
Thomas Szasz, The Myth of Mental Illness: Foundations of a Theory of
Personal Conduct

Journals
Disability Studies Quarterly
Journal of Medicine and Philosophy
 16 Moral Philosophy and Bioethics
The real work of bioethics, more often than not, is in listening, reading,
and watching carefully in order to judge what is important and what is
not.1
– Carl Elliott

Abstract
This chapter explores the emergence of bioethics as a distinctive form
of moral philosophy. Beginning with a discussion of the public’s
mounting unease with the applications and implications of “big”
science and “rescue” medicine, it examines the birth of bioethics in
the 1960s and the subsequent contributions of key thinkers such as K.
Danner Clouser, Daniel Callahan, Tom L. Beauchamp and James F.
Childress, Robert M. Veatch, and H. Tristram Engelhardt Jr. Then,
with a focus on contemporary exchanges between recent ethical
approaches, it considers how we might address some of the moral
challenges facing medicine in the twenty-first century.

Introduction
As we have seen in previous chapters (4, 6, and 14) concerns about the ethics
of clinical and research medicine began to surface in the 1960s. Revelations
of abuse led to a call for public mechanisms to govern medical research
involving human subjects. Surgical and pharmacological advances in the
transplantation of vital organs generated new uncertainties about the
definition and determination of death. And public unease mounted regarding
the use of new technologies that often seemed to prolong life at the expense
of dignity in dying. Medicine was becoming morally unsettled.
Before the 1960s, medical ethics was considered the province of physicians
alone. Guided by professional norms, codes of ethics, and the moral authority
of medicine, doctors typically made treatment decisions based on their own
judgment. New advances in medicine and biotechnology, however, raised
issues that could not be resolved by the traditional moral authority of
physicians or with the outmoded intellectual tools of medical ethics.
Increasingly, patients expressed a desire to be included in decision making
regarding their medical care, and the public grew skeptical about the
unchecked professional discretion of biomedical scientists. This chapter
surveys some of the public involvement and intellectual ferment that
accompanied the birth of a distinctive form of moral philosophy – bioethics –
in the last three decades of the twentieth century.

The Birth of Bioethics: Controversy and Scandal

To some extent, bioethics was born in response to controversy and scandal.
In 1962, LIFE magazine published an article by journalist Shana Alexander
(1925–2005) describing the proceedings of a lay committee appointed by the
local county medical society in Seattle to decide who should get access to the
newly effective life-saving technology of kidney dialysis. In “They Decide
Who Lives, Who Dies,”2 Alexander noted that among the criteria to which
the committee appealed in making life-or-death decisions were age (under
forty-five), state of residence (Washington), family considerations
(preference for heads of households), church membership, and likely future
contributions to society. By virtue of its large readership, the LIFE article
provoked widespread public consternation and heralded the need for serious
consideration of how to maximize fairness in the allocation of limited
medical resources.

Case Study: The Life or Death Committee

The meetings of the Life or Death Committee are held in the small, ground-floor library
of a nurse’s residence hall in downtown Seattle. The room is actually only a few hundred
feet away from the three-bed Kidney Center where John Myers and his fellow patients
come to be hooked up to their life-giving machines. But save for the comings and goings
of the white coated doctors, there is absolutely no traffic between the two rooms. Neither
the patients nor the committee wish any such confrontations. Their relationship is far too
intimate for casual informality. To protect the integrity of their work, the members of the
committee do not disclose exactly how many meetings they have held or how many
patients they have considered. But neither do they wish to conceal the way they try to
reach a decision, and all seven members have contributed to the preparation of the
following facsimile. The dialogue has been pieced together from the memories of the
people who spoke it. If the exchanges as recorded here seem stilted, the people are
nonetheless real, as are the five patients under discussion, and the dynamics of the
debate are wholly accurate. The lawyer, who is the committee’s chairman, has just called
the meeting to order.3
LAWYER: The doctors have told us they will soon have two more vacancies at the
Kidney Center, and they have submitted a list of five candidates for us to choose from.
HOUSEWIFE: Are they all equally sick?
DR. MURRAY: (John A. Murray, M.D., Medical Director of the Kidney Center.)
Patients Number One and Number Five can last only a couple more weeks. The others
probably can go a bit longer. But for purposes of your selection, all five cases should be
considered of equal urgency, because none of them can hold out until another treatment
facility becomes available.
LAWYER: Are there any preliminary ideas?
BANKER: Just to get the ball rolling, why don’t we start with Number One – the
housewife from Walla Walla.
SURGEON: This patient could not commute for the treatment from Walla Walla, so
she would have to find a way to move her family to Seattle.
BANKER: Exactly my point. It says here that her husband has no funds to make such
a move.
LAWYER: Then you are proposing we eliminate this candidate on the grounds that
she could not possibly accept treatment if it were offered?
MINISTER: How can we compare a family situation of two children, such as this
woman in Walla Walla, with a family of six children such as patient Number Four – the
aircraft worker?
STATE OFFICIAL: But are we sure the aircraft worker can be rehabilitated? I note he
is already is too ill to work, whereas Number Two and Number Five, the chemist and the
accountant, are both still able to keep going.
LABOR LEADER: I know from experience that the aircraft company where this man
works will do everything possible to rehabilitate a handicapped employee ....
HOUSEWIFE: If we are still looking for the men with the highest potential of service
to society, I think we must consider that the chemist and the accountant have the finest
educational backgrounds of all five candidates.
SURGEON: How do the rest of you feel about Number Three – the small
businessman with three children? I am impressed that his doctor took special pains to
mention this man is active in church work. This is an indication to me of character and
moral strength.
 HOUSEWIFE: Which certainly would help him conform to the demands of the
treatment ....
LAWYER: It would also help him to endure a lingering death ....
STATE OFFICIAL: But that would seem to be placing a penalty on the very people
who perhaps have the most provident ....
MINISTER: And both these families have three children too.
LABOR LEADER: For the children’s sake, we’ve got to reckon with the surviving
parents opportunity to remarry, and a woman with three children has a better chance to
find a new husband than a very young widow with six children.

SURGEON: How can we possibly be sure of that? 4

1. Read the dialogue carefully and try to piece together the logic. What are the
criteria for choosing one candidate over another?
2. Would you serve on the Life or Death Committee? Why or why not?
3. Why do you think Alexander’s article provoked widespread consternation?

Shana Alexander’s article was followed by signal events and widespread

public interest: in abuses in clinical research; the ethics of transplantation;
racism in government-sponsored research; and decision making in caring for
impaired newborns. Four years after the publication of Alexander’s LIFE
magazine story, an article titled “Ethics and Clinical Research” appeared in
the prestigious New England Journal of Medicine. Its author, prominent
Harvard anesthesiologist Henry K. Beecher (1904–1976), presented the
results of a literature review that revealed numerous ethical lapses in
experiments with human subjects.5
The next year, South African surgeon Christiaan Barnard (1922–2001)
performed the world’s first heart transplant, raising a host of ethical questions
(see Chapter 6), including who should have access to this new procedure.
Once it became technically feasible to transplant vital organs, conflict-of-
interest questions arose. Traditional medical ethics enjoined physicians to do
what was best for and avoid harm to patients in their care. But how to do this
when what is best for one patient depends on the death of another person? In
these circumstances, was it morally sufficient for the transplant surgeon alone
to determine the death of the organ donor, as had been the customary
practice?
 The scope of physician discretion in life-or-death decision making surfaced
in yet another context in the early 1970s in what came to be known as the
Johns Hopkins baby case in which parents requested that life-saving surgery
be withheld from their newborn with Down’s syndrome. The ensuing
controversy over appropriate care of impaired newborns and about who
should be involved in such decisions ranged widely through the medical
journals and the popular press.6
In 1972, the New York Times broke the story of the Tuskegee Syphilis
Study in which a group of illiterate African American men in Alabama were
unwitting subjects in a U.S. Public Health Service study of syphilis. Because
the researchers wanted to follow the full course of the “natural history” of
syphilis, the men were not offered curative treatment when it became
available.7
In the 1970s, the federal government established several commissions that
put forth moral principles, federal guidelines and requirements and laws,
which came to regulate both research and clinical care. In 1974, following the
Tuskegee scandal, Congress created the first of these, known as the National
Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research. The National Commission produced a series of reports,
including Research Involving Prisoners (1976), Research Involving Children
(1977), Psychosurgery (1977), Disclosure of Research Information (1977),
Research Involving Those Institutionalized as Mentally Infirm (1978),
Institutional Review Boards (1978), and Delivery of Health Services (1978).
Near the end of its tenure, the Commission also published The Belmont
Report, articulating the principles it deemed fundamental to the conduct of
biomedical and behavioral research involving human subjects: respect for
persons, beneficence, and justice.8 These principles were accompanied by
applications that eventually came to regulate the conduct of federally
sponsored research: informed consent; assessment of benefits and burdens;
and selection of subjects. These principles proliferated throughout the
bioethics literature and, as noted by Commissioner Albert R. Jonsen (1931–),
one of the drafters of The Belmont Report, “grew from the principles
underlying the conduct of research into the basic principles of bioethics.”9
Bioethics and Philosophy
Given their long history of addressing moral questions, one would have
expected philosophers to play a central role in addressing the controversial
ethical quandaries arising in biomedicine. But in the United States at mid-
century, moral philosophy as an existential and practical enterprise was more
or less moribund. Anglo-American philosophers in the first half of the
twentieth century had been principally preoccupied with analyzing the logic
of moral discourse with mathematic-like precision, with the aim of clearing
up the vagueness and ambiguity of ordinary language.10 Conceived thus, the
scope of philosophical deliberation about moral questions was necessarily
limited. Philosophers were mostly in dialogue with other philosophers.11
This was not the case, however, with continental European philosophers
who were accustomed to engaging in broad-ranging inquiry into questions of
meaning and responsibility in the cultural context of modernity. In a seminal
1973 article, Hans Jonas (1903–1993) observed that pre-modern ethics set out
from some basic beliefs: that the human condition was given; that the range
of human action for good or ill was therefore narrowly circumscribed; and
that, in that light, the human good was “known in its generality” and largely
uncontroversial.12 However, with the advent of modern science and our
acquisition of novel technological powers, the nature of human action had
changed. “The qualitatively novel nature of certain of our actions has opened
up a whole new dimension of ethical relevance for which there is no
precedent in the standards and canons of traditional ethics.”13 In a world in
which the circumstances of the human condition were believed to be largely
impervious to human intervention, “the question was only how to relate to the
stubborn fact.”14 But as modern Western society acquired new knowledge
and exercised the power to alter nature, the human condition turned out to be
more malleable than we had thought. This was both a promising and a
problematic prospect, since decisions now had to be made in the absence of
comforting metaphysical and moral constraints. “The promised gift [of new
knowledge and power] raises questions that had never to be asked before in
terms of practical choice, and ... no principle of former ethics, which took the
human constants for granted, is competent to deal with them.”15 In Jonas’s
view, the new task of ethics was to counter the drift toward “automatic
utopianism”16 – doing something because it is doable and seemingly
desirable at the moment. What Jonas called “automatic utopianism” paid
scant attention to the value of an action in the long term or in a larger scheme
of things, and it paid little attention to possible unintended consequences.
Jonas’s reflections on the existential questions raised by big science and
rescue medicine were uncommon. In the 1970s, when philosophers began to
turn their attention to the relationship of philosophical ethics to medical
ethics, most adopted a more circumscribed approach. “Medical ethics,” wrote
K. Danner Clouser (1930–2000), the first philosopher appointed to an
American medical school faculty, “is simply ethics applied to a particular
area of our lives – roughly the area touched by medicine .... ‘Structuring’ the
issues is an analytic dissection ... perhaps the central contribution of medical
ethics.” Moreover, “structuring in itself does not necessarily mean making a
decision on what to do in the situation. It simply lays out the issues, bringing
the hidden problems and principles to the surface.” Notable about Clouser’s
description is that doing medical ethics philosophically was understood to be
analytic work that stops short of making ethical judgments.17
But philosophers in this new field did not all hold the same view of their
job description. In the 1973 inaugural issue of the Hastings Center Report,
Daniel Callahan (1930–), an influential founder of the field, articulated a
more expansive view in calling for the creation of an interdisciplinary field of
bioethics that would bring philosophers and theologians into dialogue with
physicians and biomedical scientists to address pressing ethical issues in both
science and medicine. Unlike Clouser’s understanding of a medical ethics
that analyzes problems without making ethical judgments, Callahan
advocated a search for “a philosophically viable normative ethic [emphasis
added] which can presuppose some commonly shared principles” and help
“scientists and physicians make the right decisions”18 – “normative” meaning
an ethic concerned with fundamental questions of traditional moral
philosophy: What should we be? What should we do? What roles should
medicine and science play in society? Callahan’s vision of bioethics was that
of an ongoing dialogue in pursuit of guidance in thinking through moral
questions arising in anticipation of, and in the wake of, scientific, medical,
and technological advances.
The year 1979 saw the publication of Tom L. Beauchamp (1939–) and
James F. Childress’s (1940–) Principles of Biomedical Ethics, which, along
with its sister document The Belmont Report, would become immensely
influential.19 Beauchamp and Childress introduced their book thus: “Many
books in the rapidly expanding field of biomedical ethics focus on a series of
problems such as abortion, euthanasia, behavior control, research involving
human subjects, and the distribution of health care. Rarely do these books
concentrate on the principles that should apply to a wide range of biomedical
problems .... Only by examining moral principles and determining how they
should apply to cases and how they conflict can we bring some order and
coherence to the discussion of these problems. Only then can we see that
there are procedures and standards for deliberation and justification in
biomedical ethics that parallel those in other areas of human activity.”
This principles-and-applications approach, which came to be called
“principlism,” became henceforth a touchstone for a still nascent bioethics,
which would be based on the prima facie principles of autonomy (respect for
individuals’ right to make choices and decisions based on their personal
values and beliefs), nonmaleficence (an obligation to refrain from causing
harm), beneficence (forms of action intended to benefit others), and justice
(fair and equitable treatment in light of what is due) – with the principle of
autonomy first among equals.20 Most philosophers considered autonomy the
most important principle because it provided a justification for the exercise of
self-determination and choice for patients – that is, protecting them against
the traditional unilateral power of physicians in decision making.

Proceduralism and Its Limits

No sooner had applied bioethics provided principles and a procedure for
identifying and adjudicating moral conflicts than critics began to note the
limits of a procedural approach in health care contexts. Principlism is
predicated on a view that moral responsibility is tantamount to rule
responsibility. It is essential that there be rules to govern decision making and
principles to serve as arbiters when rules conflict.21
This view comports well with the concept of a social contract, which
assumes that self-interest is fundamental to social relations. The social
contract framework underlies applied bioethics and construes the relationship
between doctor and patient as one of mutual self-interest. Some critics point
out that by associating freedom with negative liberty (the freedom not to be
interfered with) and by grounding autonomy in this concept of freedom, the
social contract framework fails to adequately equip doctors and patients for a
relationship in which mutuality and trustworthiness play a significant part. In
the conscientious practice of caring for the sick, it is not merely the freedom
to be left alone but the engagement of patients and caregivers that shapes
ethical problems and should guide their resolution.
As the principles-and-applications method of applied bioethics became
increasingly prominent in journal articles and classrooms, other critics
questioned the rationale for privileging the principles of autonomy,
nonmaleficence, beneficence, and justice, and probed principlism’s view of
the moral self. Beauchamp and Childress engaged their critics in lively
debate, often taking their critics’ views into account in subsequent editions of
their groundbreaking text.22
Other principlists believed that an overarching moral theory was needed in
which to anchor appeals to principle. To this end, Robert M. Veatch (1939–)
proposed as a theoretical construct a “triple contract” which would derive
from: (1) the basic social contract between society and the medical
profession; and (2) the contract between individual patients and physicians.
These contracts, or covenants as Veatch calls them interchangeably, would
put patients and physicians on morally equal footing, thus preventing or at
least discouraging physician paternalism. Veatch stipulated that a covenant is
“a particular kind of contract – one emphasizing moral bonds and the spirit of
fidelity.” In contract theory, he writes, “humans are viewed as autonomous
agents, as ends in themselves .... It is their nature to possess the capacity for
rational and free choice and to make covenantal relationships both as
individuals and as moral communities.”23
But covenants and contracts are, arguably, two distinct kinds of social
exchange that set out from dissimilar starting points with divergent ends in
view, and ought not to be conflated. Whereas covenants are historically
rooted in communal and interpersonal practices of exchanging promises,
contracts are artificial constructs, quid pro quo calculations of mutual
advantage.24 When applied to doctor-patient encounters, a covenantal
perspective emphasizes the give and take of the relationship, while a
contractual perspective emphasizes the freedom of exchange.
H. Tristam Engelhardt Jr. (1941–) offered a different kind of
comprehensive theory for bioethics. In The Foundations of Bioethics,
Engelhardt argues that because traditional sources of moral authority are
ineffectual in a secular pluralist society, “it is hopeless to suppose that a
general moral consensus will develop regarding any of the major issues in
bioethics.” Needed instead is a new foundation on which to build a structure
for settling moral differences peaceably. The cornerstone of that foundation
will be not a common morality but an uncoerced common agreement to a
morality of mutual respect and tolerance uncommitted to any particular
concrete moral view.25
According to this theory, physicians’ primary moral responsibility is “that
of explaining to patients the geography of possible outcomes of therapeutic
interventions and their consequences and allowing patients to choose among
those possibilities.” And the task of ethical analysis is to “display the logical
content of those possibilities.”26
Engelhardt’s theory legitimates a conception of patient-physician relations
that privileges individual freedom and posits patients as autonomous
maximizers of self-interest. It is a view shared by Veatch but one that is at
odds with the experience of patients and health care professionals for whom
fellow feeling and mutual regard are central to their relationship. As William
F. May (1928–) understood, “ethicists do not adequately respect or protect
the moral being of patients if they simply clear out a zone of liberty free from
medical interference but fail to lead the patient to discuss the moral uses to
which the patient puts his liberty .... Respect must include a willingness to
engage the patient and the patient’s family in a moral give and take, a
sometimes painful mutual deliberation, judgment, and criticism, and an
occasional accounting for one another’s view, on both sides, in the
professional exchange.”27
A formidable challenge to both methodological principlism and theorizing
came from casuistry, or case-based inductive (bottom-up) reasoning, which
was proposed as an alternative to deductive (top-down) applied ethics.
Confronted with a morally problematic case, a casuist has recourse to
provisionally settled opinions, or maxims, about similar controversial past
cases. Maxims – for example, “a competent patient has the right to refuse
treatment” – resemble principles but differ in being illuminative rather than
prescriptive. Maxims aid moral reflection by drawing on received wisdom
regarding analogous cases; they point toward what may be the most fitting
resolution of a novel dilemma. This is not an application of the known to the
unknown but an extension of received “rules of thumb” which provide
general guidance to the work of practical moral reasoning in medicine.28
Over the course of the 1980s and 1990s, a lively exchange of ideas took
place among feminist ethicists,29 narrative ethicists,30 religious ethicists,31
sociologists and anthropologists,32 and virtue ethicists33 – all of whom, their
differences notwithstanding, variously shared a sense of the central
significance of contextual, experiential, relational and social elements in
deliberations about moral matters.

Conclusion
Following the formative events of 1960s and 1970s, philosophy rediscovered
its ethical voice and took its place as a discipline in scholarly and public
debates about ethical issues in science and medicine. Medicine’s pressing
practical problems awakened moral philosophy from its metaethical
preoccupations and, in so doing, “saved the life of ethics.”34 In his influential
1982 essay bearing that title, Stephen Toulmin (1922–2009) reiterated
Aristotle’s insight that ethics is a practical craft whose usefulness resides in
thoughtful attention to the particularities of situations and relationships. Its
work is done in conversations aimed not at a definitive or universally true
solution but at a reasonable, humanly livable, resolution. To the extent that it
has reappropriated this insight, bioethics generally has become less
rationalistic, less procedural, and more interdisciplinary. But as Daniel
Callahan points out, to fulfill its promise bioethics will need to return to
questions about the ends of science, medicine and technology; it will need to
set bioethics in the larger debates about what is good for both human beings
and humanity 35
Figure 16. Aristotle and Plato: detail from the School of Athens in the Stanza della
Segnatura, 1510–11 (fresco) (detail) Raphael (Raffaello Sanzio of Urbino) (1483–
1520)/Vatican Museums and Galleries, Vatican City/The Bridgeman Art Library.

Are the central figures in this painting in concord with one another or in dispute? Is
 either figure depicted in a way that suggests he is the dominant person, or subordinate?
What brings them together compositionally, what do they have in common? How are the
figures to either side responding to the central figures – with admiration, with contempt?
The title tells you that the setting is Greece, and the dress of the figures that it is
ancient Greece. Both figures are philosophers. Which is Plato and which is Aristotle?
Plato argued for the existence of ideal or universal forms that are not part of particular
things. In contrast, Aristotle argued that knowledge was derived from observation of the
concrete and particular.
Which of these philosophers would agree with Stephen Toulmin’s argument,
summarized in this chapter, that “ethics is fundamentally a practical endeavor whose
usefulness resides not in a search for general principles and their theoretical foundations
but in attention to the particularities of situations and the human relationships
constituting them?” How would the other philosopher respond?
The School of Athens is one of the most important masterpieces of Renaissance art. It
is large, sixteen by twenty-five feet, colorful, and filled with portraits of philosophers
and artists. You will find reproductions, descriptions, and interpretations of it in many
articles and books, and on the Internet.

Summation
This chapter explored the emergence of bioethics as a distinctive form of
moral philosophy. Beginning with a discussion of the public’s mounting
unease with the applications and implications of “big” science and “rescue”
medicine, it examined the birth of bioethics in the 1960s and the subsequent
contributions of key thinkers such as K. Danner Clouser, Daniel Callahan,
Tom L. Beauchamp and James F. Childress, Robert M. Veatch, and H.
Tristram Engelhardt, Jr. Then, with a focus on contemporary exchanges
between recent ethical approaches, it considered how we might address some
of the moral challenges facing medicine in the twenty-first century. Overall,
this chapter has emphasized the central significance of contextual,
experiential, relational, and social elements in deliberations about moral
matters.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. What are your fundamental values? Where did they come from? How
did you learn them? Have you ever had to reassess your values?
2. What values are most important to you in your encounters with
doctors? What values would you like your doctor to have?
3. As discussed in this chapter, Tom L. Beauchamp and James F.
Childress argue for a principles-and-applications approach to
bioethics with the prima facie principles of autonomy,
nonmaleficence, beneficence, and justice its watchwords. What do
you think of their approach? What do these principles mean to you?
4. How did technology stimulate the development of bioethics? What
are the dangers of what Hans Jonas called “automatic utopianism”?

Suggested Writing Exercises

Imagine that you are speaking with someone who is from a culture different
from your own and who has values that you do not fully understand or agree
with. How would you begin a dialogue with this person? How would you
articulate your values to them and how would you attempt to understand their
values in a way that does more than just dismiss them? Would your answers
to these questions change at all if, in this situation, you were either a doctor
or a patient? Think about these questions, and then spend fifteen to twenty
minutes writing about how you would approach the situation.

Suggested Viewing
The Cider House Rules (1999)
A Clockwork Orange (1971)
Gattaca (1997)
How to Die in Oregon (2011)
Million Dollar Baby (2004)

Further Reading
 Judith Andre, Bioethics as Practice
Robert Baker, Before Bioethics: A History of American Medical Ethics
from the Colonial Period to the Bioethics Revolution
H. Tristram Engelhardt, Jr., Bioethics and Secular Humanism
Albert R. Jonsen, The Birth of Bioethics
Gilbert C. Meilaender, Body, Soul, and Bioethics
David J. Rothman, Strangers at the Bedside: A History of How Law and
Bioethics Transformed Medical Decision Making

Advanced Reading
Carl Elliott, A Philosophical Disease: Bioethics, Culture, and Identity
Renee C. Fox and Judith P. Swazey, Observing Bioethics
Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry: A
History of Moral Reasoning
William F. May, The Physicians Covenant: Images of the Healer in
Medical Ethics
Stephen Toulmin, The Place of Reason in Ethics

Journals
Cambridge Quarterly of Health Care Ethics
The Journal of Medicine and Philosophy
Kennedy Institute of Ethics Journal
Narrative Inquiry in Bioethics: A Journal of Qualitative Research

Organizations and Groups

American Society for Bioethics and Humanities
http://www.asbh.org/ American Society of Law, Medicine, and Ethics
http://www.aslme.org/ Public Responsibility in Medicine and Research
http://www.primr.org/
 17 Medicine and Power
Power is not something that is acquired, seized, or shared, something
that one holds on to or allows to slip away; power is exercised from
innumerable points, in the interplay of nonegalitarian and mobile
relations.
– Michel Foucault1

Abstract
This chapter explores the topic of medicine and power in the context
of race, gender, and class. Beginning with a discussion of quantitative
methods of addressing medicine and power, it then examines Michel
Foucault’s description of how knowledge/power objectifies human
beings by means of dividing practices, scientific classification, and
subjectification; John Money’s description of how gender identity is
“completely malleable”; Mary Daly’s description of how American
gynecology is part of a larger tradition of the social control of
women’s bodies and minds; and various issues raised by the
Tuskegee Syphilis Study. Then, with a focus on contemporary
research in emergency rooms, it considers some of the challenges
facing us in the twenty-first century.

Introduction
There are a number of ways one could address the topic of medicine and
power along the lines of race, gender, and class. One way would be to look at
pay differences between male and female physicians. A 2011 study on newly
trained physicians in New York State focusing on the years 1999–2008 found
a $16,819 pay differential between male and female physicians.2 What is
striking about this study is that it examined the starting salaries of physicians
leaving residency programs, meaning that confounding variables such as
experience and rank were thus accounted for, at a time when one would
expect all things to be equal. Previous commentators have attributed pay
differences in medicine, when they are observed, to the fact that women tend
to pursue lower paying specialties. But this study controlled for specialty
choice, hours worked, and other such variables and found that the difference
still holds. For example, newly trained male physicians in pediatrics made, on
average, $125,343 when they began their career, while newly trained female
physicians in pediatrics only made $116,950; and newly trained male
physicians in emergency medicine made $218,767, while newly trained
female physicians in emergency medicine only made $206,114. The authors
speculate that female physicians may be seeking business practices that are
“family friendly” (i.e., business practices that are less demanding), but, if this
is the case, one might ask why women, to a greater extent than men, seek
these practices.
Another way to address the topic of medicine and power would be to
examine health care disparities across the globe. In his widely cited 1990
essay, “More Than 100 Million Women Are Missing,” economist Amartya
Sen (1933–) points out that the ratio of women to men is 1.05 or 1.06 in
Europe and North America but the ratio is 0.94 in certain parts of Asia and
Africa.3 This is curious because women, Sen observes, tend to outlive men
when given the same level of medical care (for example, the 2011
preliminary data from the Center for Disease Control in the United States
indicates that the life expectancy for women is 81.1 years and for men is 76.3
years4). So one would expect that there would be more women than men in
the world. This, however, is not the case. In 2012, the world population was
7,003,554,291 (3,526,050,280 male, 3,477,504,011 female).5 Sen calculates
that some 100 million women are “missing” on account of gender bias, and
he suggests that one expression of this bias is that men have better access to
goods such as medicine and thus outnumber women in the world. Sen’s
calculations have been subject to debate,6 but his point with regard to
women’s health still stands.
These ways of addressing the topic of medicine and power (i.e., by
comparing physician salaries and health disparities) are quantitative or social
scientific; this chapter, in contrast, addresses the topic of medicine and power
from a humanities perspective by exploring the links between knowledge and
power in medicine. In a sense, this chapter is a continuation of Chapter 15,
which demonstrates that concepts of health and disease are shaped by cultural
values. Here we explore the subtle workings of power along such lines as
race, gender, and class and introduce the thought of Michel Foucault (1926–
1984) as one way of thinking about power in medical humanities. We begin
by introducing some of Foucault’s key ideas and then apply these ideas to
topics in medical humanities. Our point here is not to explore Foucault’s
writings on medicine and psychiatry – as found, for example, in The Birth of
the Clinic7 or in Madness and Civilization8 – but rather to introduce a way of
asking questions in medical humanities.

Michel Foucault
Foucault was a French philosopher associated with the Collège de France
who focused on the history of thought. Specifically, he was interested in
studying how language functions in various contexts to demonstrate the ways
in which knowledge production serves particular political interests. For
Foucault, knowledge cannot be separated from power. Indeed, as the epigram
of this chapter suggests, Foucault thought that power is ubiquitous and
everywhere. He argued that, while we cannot escape power relations, we
should try to keep altering them.
Foucault’s thought is difficult to introduce. For this reason, we turn to Paul
Rabinow (1944–), an expert on Foucault, who wrote an introductory essay on
Foucault’s thought.9 Rabinow notes that Foucault explored the link between
knowledge and power by studying three ways in which human beings are
objectified: (1) dividing practices; (2) scientific classification; and (3)
subjectification. Dividing practices involve separating individuals or groups
from other individuals or groups, such as the poor from the rich, the insane
from the sane, and the criminals from the law-abiding citizens.
Scientific classification resembles dividing practices (indeed, Rabinow
points out that Foucault held that one can only distinguish between dividing
practices and scientific classification at the analytical level). The key idea
with regard to scientific classification is that modes of inquiry, such as
biology and anthropology, also divide human beings. For example, various
disciplines are employed in classifying some as sick and others as well, some
as Hispanic and others as Asian, and some from the Occident and others from
the Orient. Foucault’s point is that both literal dividing practices as well as
abstract scientific classification are related to power. While it is easier to see
how domination is related to the confinement of prisoners, domination is also
a part of scientific classification (though, Rabinow notes, this relation is
“more oblique”10). An exemplary text in this tradition of inquiry is Edward
Said’s (1935–2003) Orientalism,11 a modern classic in post-colonial studies,
where Said traces the ways in which Western conceptions of the Middle East
(e.g., historical and anthropological scientific classifications of “the Orient”)
have been used to justify Western imperialism.
But Foucault’s most creative interest, Rabinow points out, involved
exploring the ways in which human beings are made into “subjects,” what
Foucault refers to as processes of subjectification. Foucault is interested in
how various social and intellectual forces cultivate self-formation in
individuals. In other words, what does it mean to think of oneself as
“heterosexual” or “homosexual”? The claim here is that these categories have
not always existed, meaning that (1) the idea that a person would identify as a
“homosexual person” is a relatively recent phenomenon; and (2) the personal,
subjective experience of identifying as straight or gay did not exist before
these categories were posited (this does not mean that straight or gay people
did not exist once upon a time, say, before the nineteenth century; it just
means that people did not think of themselves in these categories because the
categories did not exist). In other words, the idea of sexual orientation has
created new possibilities for subjectivity. Similarly, new possibilities for
gendered experience changes over time because cultural constructions of
masculinity and femininity change over time. In The Body Project, for
example, Joan Brumberg (1944–) traces the history of American girls’ self-
formation with regard to femininity by examining their diaries; she found, by
extensively reading diaries, that some 100 years ago American girls from all
over the country where concerned with cultivating inner beauty whereas
today they are preoccupied with cultivating outer beauty.12

Foucauldian Examples
 Category

Dividing Isolation of lepers; confinement of poor;

Practices institutionalization of persons with mental
illness; imprisonment of socially deviant

Scientific Creation of “objective” categories in various

Classification disciplines (e.g., biology – alive or dead;
economics – productive or unproductive;
Middle Eastern studies – Occident or Orient;
medicine – normal or abnormal)

Subjectification Creation of possibility for active cultivation of

subjective experiences and identities (e.g.,
gay/straight; masculine/feminine; modern
psychological self-awareness)

What is most original about subjectification, Rabinow points out, is that, in

cases of dividing practices and scientific classification, the subject is passive,
but in cases of subjectification, the subject is active. In other words, in
subjectification, persons actively create their own identifies by playing out
and playing into the cultural scripts that they are given.

Foucauldian Interrogations in Medical Humanities

We now want to apply Foucault’s thought in medical humanities. We do so
by analyzing various topics in medical humanities through the lens of
Foucault’s three modes of objectification (i.e., dividing practices, scientific
classification, and subjectification). The topics that we focus on involve
issues of race, class, and gender. This chapter is an example of medical
humanities as moral critique and political aspiration.

The John Money Controversy

In “The Five Sexes, Revisited,” Anne Fausto-Sterling (1944–) notes that in
the 1950s clinical researchers at Johns Hopkins University revolutionized
thinking about sex and gender.13 John Money (1921–2006), a psychologist,
led the way. They argued that gender identity is “completely malleable” for
the first eighteen months after birth. This provided psychological justification
for the medical management of and surgical intervention on infants who
presented with so-called ambiguous genitalia (or intersex conditions, also
known as disorders of sex development) for any number of biomedical
reasons, such as gonadal dysgenesis, congential adrenal hyperplasia, partial
or complete androgen insensitivity syndrome, or hypospadias.14 The Intersex
Society of North America defines “intersex” as “a general term used for a
variety of conditions in which a person is born with a reproductive or sexual
anatomy that doesn’t seem to fit the typical definitions of female or male.”15
An ideal test case presented itself to Money and his colleague to test the
theory of gender malleability.16 Twin boys were born in Canada in 1965.
Neither was born with an intersex condition. But one of them, Bruce, was
severely injured on account of a circumcision accident during which his penis
was severely burned. In 1967 Bruce’s parents heard about Money’s thesis by
means of a television program, and they contacted him to see if Bruce could
be reassigned as a girl. Money agreed. He arranged for Bruce’s penis and
testes to be removed, and Bruce was renamed Brenda. If successful, Money’s
claim that gender identity is a matter of nurture, and not nature, would seem
to be very strong if one boy of a pair of male twins could be reassigned
successfully as a girl.
So Bruce became Brenda. The family traveled to Johns Hopkins each year
for follow ups. Money gave presentation after presentation and he wrote
paper after paper about the case, claiming confirmation of his theory. He
became somewhat of a celebrity in sexology. As Brenda approached puberty,
Money encouraged her to take female hormones so that she would grow
breasts; she reluctantly agreed. But being a girl never felt quite right to
Brenda (she would, for example, attempt to urinate while standing). She did
not know the truth about her body until she was fourteen, when a psychiatrist
determined that it was time for her to know the truth. When she found out,
she stopped taking female hormones and instead began taking testosterone.
She began wearing male clothing and renamed herself David.
So Brenda became David. David subsequently arranged to have surgery to
reattach his penis and testes in prosthetic form. In 1990 David married Jane
Fontane. He suffered from depression throughout his adulthood and
committed suicide in 2004. In the meantime, Money continued writing papers
on the success of the case. The complications of the case were not brought to
light until 1997 when two psychiatrists who had been consultants on the case
published a paper that revealed that the case was an utter failure.

Discussion: The Case of David Reimer

Even though David Reimer was not born with an intersex condition (his medical
condition, as noted, was due to a circumcision accident), his case is often invoked when
thinking about intersex conditions (also known as disorders of sex development),
conditions where infants are born with so-called ambiguous genitalia. Sometimes
corrective surgeries are performed to “fix” these infants. What power relationships are
being assumed and perpetuated by means of this practice? Is not the idea that human
beings are either male or female a created vocabulary that enables a particular kind of
understanding of the human body? If the vocabulary does not fit the bodies that we see,
why is it that bodies, rather than vocabulary, should change?

Foucault, as noted, is interested in how ideas function. So, one might ask,
how has the scientific theory of gender malleability functioned both in the
case of David and in wider society? The idea of gender malleability, at first
glance, seems to be a liberating one. This point of view suggests that one’s
gender identity and one’s gender performance are not given by God or by
nature but are learned. And if gender identity (e.g., how one defines one’s
own gender, such as thinking of oneself as a man, a woman, or as
transgendered) and gender performance (e.g., how intimates one’s gender to
others through bodily practices, such as wearing gender-specific clothing) are
things that we learn, it seems to follow that society ought to be accepting of a
wide range of gender expressions. This seems to be a progressive idea, not a
form of domination. Yet the effect of the idea of gender malleability did not
create a more accepting society with regard to persons of so-called disorders
of sex development but, rather, a society in which the medical intervention
for disorders of sex development was performed more regularly (which, of
course, has financial implications). In this sense, society became less, not
more, accepting of difference on account of the idea of gender malleability.
The idea of gender malleability gave Bruce’s parents and his doctors the
power, in the form of scientific knowledge and medical authority, to form,
quite literally, his body.

Body Projects for and of Women

Mary Daly (1928–2010) was a highly creative radical lesbian feminist
philosopher who taught at Boston College for more than thirty years.17 She
began her career as a Christian theologian but eventually de-converted from
Christianity and subsequently referred to herself as “post-christian” because
she viewed Christianity as hopelessly sexist and androcentric. She was well
known for not allowing men to talk in her classes in feminist theory.
In Gyn/Ecology, Daly has a chapter on American gynecology.18 This
chapter follows a chapter on Chinese foot-binding (a practice where the feet
of women are wrapped in a tightly bound state such that the feet become
deformed) as well as a chapter on what she calls African genital mutilation19
(practices where various parts of a girl’s genitals are removed), practices,
Daly argues, that are performed for the sake of “beauty.” In the chapter on
American gynecology, she argues that the history of American gynecology is
a part of a larger tradition of the social control of women’s bodies and minds
– a tradition that can be observed both cross-culturally and historically – and
that this tradition of patriarchy and misogyny continues into the present. “It is
essential,” she writes, “to see that the specialized treatment for women known
as gynecology arose in the nineteenth century as a direct response to ...
feminism” in America.20
Daly begins her argument by qualifying what she means by “gynecology.”
She writes:

I use the term gynecology broadly to all those professions – including

psychiatry and the other psychotherapeutic fields – which specialize in
the “disease and hygiene” of women’s bodies and minds. I use the term
gynecologist to refer to all members of those professions whose beliefs
and behaviors are motivated by loyalties to their patriarchally identified
fields rather than by concern for women.21

Daly concedes that some specialists are sometimes helpful but adds that
“such genuine helpfulness occurs in spite of the pervasive intent, ethos, and
method of their professions.”22 Her point is that “gynecologists,” as defined
above, control women by preoccupying them in unnecessary ways that, in
effect, privilege men because such medicine takes up the time and energy of
women. Consider this advice from one physician:

Self-examination, regular examination by a qualified breast surgeon,

mammograms, xerograms, and thermograms still remain the best
defense against breast cancer.23

Daly comments: “This is, of course, an effective formula for keeping women
in a state of ... preoccupation.”24 In recent years, there has been lively debate
concerning overtreatment (especially the overuse of mammograms25), but
most of this literature has focused on evidence-based outcomes and on
healthcare costs. Daly’s concerns are focused more directly on the ongoing
political liberation of women.
Daly offers a number of historical observations to support her argument
that American gynecology emerged as a direct response to nineteenth-century
feminism. Some of the most compelling include:

1. The “father of gynecology,” J. Marion Sims (1813–1883),

experimented on vulnerable women, such as slaves, so that he could
perfect his techniques for white women;
2. The first Women’s Rights Convention in America was held in 1848,
and, around this time, Charles Meigs (1792–1869) instructed his
(male) students that by studying the female organs they would be
able to understand and to control the hearts, minds, and souls of
women;
3. A decade after the first Women’s Rights Convention, the
“clitoridectomy” was invented by Isaac Baken Brown (1811–1873)
and was advocated as a cure for female masturbation in the United
States; and
4. In 1873, female castration – that is, the removal of the ovaries – was
invented by Robert Battey (1828–1895) to cure female insanity.

These historical facts do cast the practice of gynecology in a macabre light.

Daly’s argument can be summarized as follows: When American women in
the nineteenth century were beginning to demand equal treatment, their
“acting up” was diagnosed as hysterical, and surgery was offered as a
medical solution. Medicine, then, functioned as a tool of patriarchy.
Some might dismiss this history as a part of an unfortunate past, something
that no longer applies to us today. But Daly goes on to show that a more
subtle form of power exerts itself in the lives of contemporary American
women in the form of cosmetic medicine. How? Women, by a variety of
means but especially advertising, are formed into consumers in ways that
men, by comparison, are not (though body image has become an issue for
boys and men in recent years as well26). “Filled with inspired fixations,” Daly
writes, women check “to see if hair, eyebrows, lashes, lips, skin, breasts,
buttocks, stomach, hips, legs, and feet are ‘satisfactory.’”27 Foucault’s notion
of subjectification is especially relevant here because no one is “forcing”
women to obsess about all of these issues related to body image. It is also
important to note that, while women themselves value and pursue cosmetic
medicine, desire for women’s bodies (especially heterosexual male desire) is
also shaped by advertising, and this desire for particular kinds of women’s
bodies, in turn, asserts another kind of pressure on women that directly
impacts their sexual and romantic relationships. Oppression or domination
here is more subtle because women internalize certain images about how they
should look and then work to conform by dieting, obsessive exercising,
surgery, and consuming beauty products. When viewed alongside African
genital mutilation, one might be able to see that issues of gender have not
been “solved” in America. External practices that are limiting in Africa, Daly
points out, correspond to internal formations that are also limiting in
America.

Medical Apartheid and the Distinction between

Prejudice and Racism
African Americans have been exploited in a variety of ways for centuries in
the United States. This was most obviously the case during slavery. Racism,
however, persists today – well after slavery, well after the civil rights
movement, well after affirmative action, and even after the election of Barack
Obama, the first African American President of the United States. Racism is
not simply a matter of the past.
It is helpful to make a distinction between racial prejudice and structural
racism.28 Racial prejudice is personal and concerns whether an individual
dislikes or hates a particular group of people based on race or ethnicity, or
believes that a particular group of people is inferior or superior based on race
or ethnicity. The Ku Klux Klan, for example, is a group that is racially
prejudiced, as its members believe that African Americans are inferior to
Caucasian Americans. Structural racism is different. Structural racism is
social and concerns the extent to which a society privileges some and
disenfranchises others. If differences exist between races or ethnicities along
the lines of, say, access to care, health outcomes, incarceration rates,
education, and social and economic class, then the society is racist
structurally speaking even if no one in the society is at the individual level
racially prejudiced. For example, the U.S. Census Bureau reports that the
median income for all families in the United States was $61,521 in 2008. The
median family income for whites was $65,000, while the median income for
blacks was $39,879. The percentage of children in the United States living
below the poverty line was 18.5 percent for all races in 2008, though the
percentage of whites living below the poverty line was 15.3 percent while it
was 34.4 percent for blacks.29 These data suggest structural disadvantages for
blacks – disadvantages that will likely affect their education, their income,
their health, and the course of their lives.
Sometimes racial prejudice and structural racism overlap: “[I]t was cheaper
to use niggers than cats,” Henry Bailey noted in 1977, “because they were
everywhere and cheap experimental animals.”30 Bailey was referring to his
neuroresearch at Tulane University in New Orleans, research that was funded
by the Central Intelligence Agency (CIA). Today, it is less common to hear
officials talk in blatantly prejudiced ways, but the structural disadvantages
that were present in 1977 still persist to some degree, as indicated by the data
above.
 Figure 17. Boston Doctors, ca. 1850. Albert Sands Southworth 1811–1894.
Daguerreotype, 16.5 x 21.6 cm (6 1/2 x 8 1/2 in.). Gift of I. N. Phelps Stokes, Edward S.
Hawes, Alice Mary Hawes, and Marion Augusta Hawes, 1937 (37.14.39). The
Metropolitan Museum of Art, New York, U.S.A. Image copyright © The Metropolitan
Museum of Art. Image source: Art Resource, NY.

A formidable group, these twelve Boston doctors were photographed in 1850. The
stiffness of their poses was partly due to the required exposure time – more than 10
seconds required by the daguerreotype process, invented in 1839. Following the
direction of this chapter, how would you interrogate the points from which this group
exercised power among themselves as well as in relation to their patients and to society
in general? Do you think they are as uniform in their opinions and perspectives as their
dark suits suggest?

As we have seen in Chapter 2, new knowledge about disease has

historically been retracted from the bodies of persons of color. In Medical
Apartheid, Harriet Washington chronicles the history of human subjects
research in light of racism. She writes about exploitation on plantations, the
display of black bodies during surgical procedures in the antebellum clinic,
the Tuskegee Syphilis Study, radiation experiments on African Americans,
research on black prisoners, and current research in emergency rooms and in
Africa. This history is vast. And there are many excellent books that engage
it: for example, James Jones’s (1943–) Bad Blood,31 Eileen Welsome’s The
Plutonium Files,32 Todd Savitt’s (1943–) Medicine and Slavery,33 Allen
Hornblum’s (1947–) Acres of Skin,34 Susan Reverby’s Examining
Tuskegee,35 and John Hoberman’s (1944–) Black and Blue.36 We commend
Washington’s book to those who want an introduction to this history, but we
also want to point out that Washington is writing as a journalist, not as a
scholar, and one reviewer of the book has sharply criticized the book for a
number of incorrect facts.37 We believe, however, that the strength of the
book – putting much of this history into a single, readable volume –
outweighs the weaknesses of getting this or that fact wrong. Here we present
two case studies discussed in Washington’s book (the Tuskegee Syphilis
Study and contemporary research in emergency rooms), and we supplement
her presentation with relevant scholarly sources.

The Tuskegee Syphilis Study

The Tuskegee Syphilis Study (discussed in several other places in this book –
see the index) is universally mentioned when addressing the topic of race and
medicine. As previously noted, in 1932 the United States Public Health
Service began a study in Macon County, Alabama, to observe the natural
progression of untreated syphilis in African Americans, and the study lasted
until 1972. During these forty years of experimentation, subjects were
enrolled and led to believe that they were being treated for “bad blood.” But
in fact they were being studied and not treated. Penicillin became widely
available in the 1950s but was withheld from the men in the study so that the
natural course of syphilis could be observed – until death.38
The study was not kept a secret. Indeed, health care professionals involved
presented papers and articles about their research. Physicians, for example,
presented at the American Medical Association. Allan Brandt notes that the
first paper published about the study appeared in 1936, and a paper was
published every four to six years until the study was disrupted.39 From time
to time, persons and groups would voice opposition to the study. But it
wasn’t until Peter Buxtun, an employee of the Public Health Service, took
action that the study was stopped.40
There were numerous ethical violations in this study: (1) the subjects
enrolled in the study were a vulnerable population; (2) the subjects were
induced to enroll in the study by means of free hot meals and small amounts
of money; (3) health care professionals lied to the subjects about the nature of
the study; (4) the study did not offer the subjects any direct benefit, and,
indeed, once penicillin became available, the study prevented the subjects
from receiving any potential benefit from taking the drug because they were
considered ineligible to receive penicillin; and (5) prior to penicillin, the
standard of care for the treatment of syphilis (arsenotherapy) was withheld
from them.
Some have defended the Tuskegee Syphilis Study, arguing that, by 1950
(when, as noted, penicillin became widely available), penicillin would not
have helped the subjects in the study because they would have reached the
advanced stages of syphilis (tertiary syphilis) by this point. Others have
argued that the standard of care of the day (arsenotherapy) did more harm
than good, and so the study was good for these men because they were spared
from harm. Still others have argued that these men, because they were poor,
would never have been treated anyway – that is, with or without the study,
their fates would have been the same. And still others deny any racial
component to the study, that, in effect, the study “just happened to be in a
black community.”41
These defenses of the Tuskegee Syphilis Study enable us to ask
Foucauldian questions in a clear and straightforward manner. What medical
and scientific assumptions enabled African Americans to be singled out and
enrolled? At the time, some believed syphilis affected the neurological
systems of whites but the cardiovascular systems of blacks, and the study was
therefore designed to test this hypothesis. The research was also framed as “a
study in nature” and not as an experiment. Framing the study in this way
enabled the researchers to assume a passive role. In other words, this logic
suggests that the researchers were not actively doing any harm by means of
an experiment but were merely observing nature. A Foucauldian perspective
would query the function of the vocabulary of knowledge here: Whose
interests are being served by this vocabulary? One might also ask, How do
assumptions about race and sexuality – blacks (both men and women) were
assumed to be more sexual and less moral than whites42 – intersect with this
“study in nature”? Or one might question assumptions relating to economic
class. It wasn’t, after all, rich African Americans who were enrolled in the
study but poor ones. What “science” enabled these practices?
A Foucauldian perspective here would emphasize that it was not a lack of
committees or a lack of oversight that led to this scandal, but that it was the
link of knowledge and power, the very discourse of science. A key lesson
from Tuskegee Syphilis Study, we suggest, is not that we need stringent
institutional review boards and other such bureaucratic checks (though, to be
sure, these review boards are important) but that we need to examine, on an
ongoing basis, how our current research interests are related to power.

Contemporary Research in Emergency Rooms

In recent years, researchers in emergency rooms have been testing the effects
of artificial blood substitutes such as PolyHeme and Hemopure. Washington
points out that the development of such a substitute would constitute a
significant achievement with many health benefits. Blood transfusions, for
example, would be easier and safer, as there would be no need to match
blood types, and the risk of transmitting viruses would be avoided as well.
There would no longer be a shortage of blood in large cities or in rural areas,
as artificial blood substitutes can last for two years, much longer than blood
can be stored. But the ethics of this research is questionable, Washington
argues, because patients who are in need of blood transfusions in the
emergency room are often unconscious and therefore do not have the
opportunity to consent to this research.43
Instead of obtaining individual consent in emergency room research, one
practice has been obtaining “community consent.” For example, if a given
individual does not want to be enrolled in such a study in one’s own
community and should happen to need a blood transfusion, one would need
to wear some kind of marker such as a bracelet that indicates that one does
not want to be a part of the study to prevent oneself from being enrolled
while unconscious.44 Advocates for this research justify it without initial
consent on the grounds that the risk to individuals is minimal while the
potential gains for society are great – that is, we need more effective ways of
treating trauma victims. While this may be true, Washington invites us to ask,
Who is it that will be bearing this “minimal risk”? Will those who bear this
“minimal risk” turn out to be poor or vulnerable in some other way?

Conclusion
In this chapter, there are a number of theorists that we could have used to
think about power. We could have used, for example, S. Kay Toombs
(1943–),45 Havi Carel,46 or Fredrik Svenaeus.47 But because Foucault is such
a towering figure in the humanities, we felt it best to introduce his thought
rather than other thinkers; graduate students in medical humanities should
explore these other thinkers in detail. Also, there are many other topics that
we could have focused on, such as contemporary debates over AIDS research
in Africa; the underfunding of the study of women’s health; the Guatemala
Syphilis Study; and rhetoric surrounding the health care reform debate in the
United States – this list could be greatly expanded. We invite readers to
consider more thinkers as well as more topics for interrogating medicine and
power. We also invite readers to consider the links between knowledge and
power within medical humanities.

Summation
This chapter explored the topic of medicine and power in the context of race,
gender, and class. Beginning with a discussion of quantitative methods of
addressing medicine and power, it examined Michel Foucault’s description of
how knowledge/power objectifies human beings by means of dividing
practices, scientific classification, and subjectification; John Money’s
description of how gender identity is “completely malleable”; Mary Daly’s
description of how American gynecology is part of a larger tradition of the
social control of women’s bodies and minds; and various issues raised by the
Tuskegee Syphilis Study. Then, with a focus on contemporary research in
emergency rooms, it considered some of the challenges facing us in the
twenty-first century. Overall, though, this chapter has attempted to emphasize
how many of the seemingly objective practices of medicine are, in fact,
embedded in complex networks of knowledge/power.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. What cultural scripts do play a role in your life? Are they helpful or
unhelpful?
2. In what ways does medical education cultivate the selves of medical
students and/or premed students?
3. In what ways are medical scripts liberating, and in what ways are they
constricting?
4. How do medical scripts play into other operations of power in a given
society?

Writing Exercise
Sometimes the negative effects of actively playing into a cultural script can
be seen as destructive, such as when young women internalize the ideal of the
supermodel and then denigrate themselves for not achieving this ideal. Boys,
too, in recent years have been struggling with masculine ideals about male
body image. Write a personal journal entry (three paragraphs) about your
feelings toward your body. You do not need to share this with anyone.

Suggested Viewing
Cider House Rules (1999)
Hermaphrodites Speak! (2008)
Miss Evers’ Boys (1997)

Suggested Listening
“911 is a Joke,” Public Enemy
“A Boy Named Sue,” Johnny Cash
“Lola,” The Kinks
Advanced Reading
Judith Butler, Gender Trouble
Michael Foucault, The Birth of the Clinic
John Hoberman, Black and Blue: The Origins and Consequences of
Medical Racism
Deborah Lupton, Medicine as Culture: Illness, Disease and the Body
Ellen Moore, Elizabeth Fee, and Manon Parry, eds., Women Physicians
and the Culture of Medicine
S. Kay Toombs, The Meaning of Illness
Cornell West, Race Matters

Journals
International Journal of Feminist Approaches to Bioethics
Medical Anthropology Quarterly
Signs

Online Resources
AMA Website on Eliminating Health Disparities
http://www.ama-assn.org/ama/pub/physician-resources/public-
health/eliminating-health-disparities.page
Judith Butler on Gender
http://www.youtube.com/watch?v=Bo7o2LYATDc
Cornell West on the Role of Philosophy
http://ed.ted.com/on/0iY9k6uU
International Network on Feminist Approaches to Bioethics (FAB)
http://www.fabnet.org/
Race and Culture/Ethnicity Affinity Group of ASBH
http://www.asbh.org/
 18 Just Health Care
A decent medical-care system that helps all the people cannot be built
without the language of equity and care.1
– Rashi Fein

Abstract
This chapter explores the issue of equity in the organization and
distribution of health care. Beginning with a discussion of various
presidential attempts to establish greater equity, it examines what
Paul Starr calls “the American health care trap” as well as the reasons
why America, alone among postindustrial democracies, has failed to
enact a universal health insurance program. Then, with a focus on
recent work in the field, it considers how we might find our moral
and political compass amidst the complex network of actors and
institutions that determine how we organize and distribute health
care.

Introduction
In Chapters 11 and 12, we discussed the virtue of care in doctor-patient
relationships. But what of equity, or fairness, in the organization and
provision of health care? This chapter critically examines the requirements of
justice in the allocation and distribution of health care services.
Justice is considered one of the primary virtues of a good society. Beliefs
about justice help constitute social relationships in a society and, in turn,
reflect those beliefs in the relationships thus constituted. Two conceptions of
justice tend to predominate in modern thought: to each according to one’s
need; and to each according to one’s merit or contribution. Debates about
justice generally occur at points of tension between those who believe that
justice is principally a formal matter of rules and procedures (treating people
justly means consistently and fairly applying relevant rules to them); and
others who are committed to the idea that the substantive content of justice
should be empirically determined (do people have what they need to live a
decent life?).
Modern democracies typically combine aspects of these two conceptions
by privileging either the provision of social resources responsive to need, or
market mechanisms to determine merit. Even in societies where hunger and
homelessness are tolerated, few would deny that some needs (e.g., for food
and shelter) are “basic,” meaning one can’t live without their being met. Is
health care a basic need? If so, how should a decent society go about meeting
it?

Early Struggles
America has struggled for decades with the question of how to distribute and
pay for quality health care services for its citizens. Here is an excerpt from a
presidential State of the Union Address. “Action thus far taken falls far short
of our goal of adequate medical care for all our citizens. If we are to deal with
the problem realistically and in its true dimensions, action is required on a
broader scale. Technical resources have been greatly increased, but as a
nation we have not yet succeeded in making the benefits of these scientific
advances available to all those who need them. The best hospitals, the finest
research laboratories, and the most skillful physicians are of no value to those
who cannot obtain their services. Our objective must be two-fold: To make
available enough medical services to go around, and to see that everybody
has a chance to obtain those services. We cannot attain one part of that
objective unless we attain the other as well.” One would not be faulted for
thinking that this statement is of recent origin but it is, in fact, from President
Harry Truman’s 1949 State of the Union Address.2
For complicated political reasons, the Social Security Act, which had
become law in 1935 during Franklin D. Roosevelt’s presidency, made no
mention of health security. When FDR took office in 1933, “the Great
Depression had altered political priorities. With millions out of work and a
grass-roots movement among the elderly demanding help from government,
unemployment relief and old-age pensions became more urgent than health
insurance.” Nonetheless, despite strenuous efforts made by the Roosevelt
administration to include health insurance in deliberations about the Social
Security Act of 1935, “the AMA went into high gear to oppose any action,
and key congressional leaders made it clear that health insurance would get
no consideration.”3
Roosevelt subsequently made two attempts at a national insurance
program. In 1937 he tested the political waters for a proposal to provide
federal support for maternal and child health, the disabled, the poor and the
general public, and for hospital construction. But again, the American
Medical Association mobilized against any such idea, and congressional
leaders followed suit. In his 1944 State of the Union address, Roosevelt
called for “an ‘economic bill of rights’ to fulfill hopes for the security that
Americans were fighting for in World War II. Among those were a ‘right to
adequate medical care’ and ‘a right to adequate protection from the economic
fears of sickness.’”4
Three months later the president was dead, as was any prospect for
comprehensive national health reform for the following two decades.

1940s–1970s
Shortly after becoming president in 1945, Truman urged Congress to
establish a national health insurance system to ensure adequate medical
coverage for all citizens. Public reaction was initially sympathetic, but
reception in Congress was less so. Faced with strong organized opposition
from the proposal’s opponents, who successfully labeled Truman’s efforts
“socialized medicine,” the idea of a national health insurance program was
scuttled.5
During John F. Kennedy’s short-lived presidency in the early 1960s,
momentum for health care coverage for the elderly gathered steam in
response to the ever-rising cost of hospital care. After Kennedy’s
assassination, Medicare became a centerpiece of President Lyndon B.
Johnson’s Great Society initiatives, and in 1965 Johnson signed into law a
compulsory hospital insurance program under Social Security (Medicare Part
A), an insurance program covering physicians’ fees (Medicare Part B), and a
joint federal-state insurance program for low-income individuals (Medicaid).
In 1970, Massachusetts Senator Edward Kennedy and Representative
Martha W. Griffiths of Michigan introduced the Health Security Act, calling
for all extant public and private health plans to be consolidated in a single,
federally operated comprehensive health insurance system. Key components
of the plan were a cost-controlled national budget, from which funds would
be allocated regionally, and incentives for prepaid group practice.6
In response, the Nixon administration countered with a proposal of its own
to expand the small number of nonprofit health maintenance organizations
(HMOs) already in operation, such as the successful Kaiser-Permanente
prepaid group practice, and to encourage profit-making corporations to join
in the expansion effort. President Nixon signed the Health Maintenance
Organization Act into law in late December 1973, explaining that its purpose
was to “provide initial Federal development assistance for a limited number
of demonstration projects, with the intention that they become self-sufficient
within fixed periods.”7
The HMO Act was far less than the comprehensive insurance program that
reformers had hoped for, but it did advance the cause. Moreover, Nixon
announced his intention to submit a bill to the next session of Congress
creating a national health insurance system. In a message to Congress on
February 6, 1974, he described national health insurance as “an idea whose
time has come in America.” But the Watergate scandal quickly consumed the
administration’s attention, and six months later Nixon resigned the
presidency.

1980s
Ronald Reagan ran for president to “get government off our backs,” and
included in his first budget after taking office provisions for cutting federal
health programs, including Medicaid. By this time, as Paul Starr puts it, “the
health-care industry was already becoming more of a field for corporate
enterprise primarily because of the profitable opportunities created by the
absence of effective cost controls in either private insurance or government
programs.”8
Although circumstances varied, and many different factors were at play in
the defeat of these reform efforts, there were two notable constants: (1)
Americans’ traditional wariness about government overreach, and (2)
organized medicine’s relentless opposition to any reform that might threaten
the profession’s sovereignty over all things medical. In 1982, Starr opined
that, “In its rejection of ‘big government’ the public seems to be expressing a
desire to return to older and simpler ways. Similarly, the medical profession,
in protesting against government regulation, wants a return to the traditional
liberties and privileges of private practice. But ... in medical care, the reliance
on the private sector is not likely to return America to the status quo, but
rather to accelerate the movement toward an entirely new system of corporate
medical enterprise.”9 Ironically, in steadfastly opposing government
involvement in organizing a national health insurance system, organized
medicine opened the door to corporate dominance.

1990s
Soon after assuming the presidency in 1993, Bill Clinton made health care
reform a central goal of his administration. Despite a modest increase in
Medicaid eligibility, the uninsured population had risen to 38.6 million in
1992, an increase of 5.2 million from 1989. Health care costs seemed out of
control. Employers were trimming benefits. Insurance premiums were on the
rise, limiting increasing numbers of Americans’ access to care. Public
opinion strongly favored fundamental reform.
Clinton’s plan was ambitious, some said audacious. “The federal
government would establish a right to affordable health care, provide much
of the financing, and set a limit to the rate of growth of expenditures ....”10 In
light of rising costs and deteriorating coverage, Clinton advocated a system
of universal, comprehensive coverage featuring consumer choice based on
price competition among private health plans. Each private health plan would
deliver a package of uniform benefits (managed competition) under a ceiling
on health spending. The president’s personal commitment to the reform effort
was evident when he appointed Hillary Rodham Clinton to chair the
President’s Task Force on National Health Care Reform and named his close
advisor Ira Magaziner as its director.
Clinton unveiled the framework for his plan in a rousing speech to a joint
session of Congress on September 22, 1993. He began by outlining the
problems prompting the need for reform. Then, turning to the proposed
remedy, the president invoked the notion of security and, in a particularly
effective symbolic gesture, held up a laminated card resembling a driver’s
license, saying, “Under our plan, every American would receive a health
security card that will guarantee a comprehensive package of benefits over
the course of an entire lifetime, roughly comparable to the benefit package
offered by most Fortune 500 companies. This health security card will offer
this package of benefits in a way that can never be taken away .... With this
card, if you lose your job or you switch jobs, you’re covered. If someone in
your family has unfortunately had an illness that qualifies as a preexisting
condition, you’re still covered. If you get sick or a member of your family
gets sick, even if it’s a life-threatening illness, you’re covered. And if an
insurance company tries to drop you for any reason, you will still be covered,
because that will be illegal. This card will give comprehensive coverage. It
will cover people for hospital care, doctor visits, diagnostic services like Pap
smears and mammograms and cholesterol tests, substance abuse, and mental
health treatment.”11 The speech was generally well received, and public
reaction was positive. Momentum for reform seemed to be building. Early
endorsement of significant reform by key interest groups and a cautious
bipartisan spirit in Congress pointed toward the possibility of progress.
But soon fissures appeared. Congressional Democrats needed the support
not only of moderate Senate Republicans and conservative House Democrats
but also of influential business leaders. To complicate matters, the Democrats
themselves were not of one mind about the shape reforms should take. Some
favored universal health care without managed competition; others wanted
managed competition without universal coverage. As the wrangling dragged
on and the bill became more complicated, momentum flagged.
Meanwhile, the health care industry launched a nationally televised
advertising campaign featuring a concerned couple, “Harry and Louise,”
sitting at their kitchen table and worrying that the Clinton health plan would
cramp consumer choice. “They choose, we lose” was the ad’s punch line.
Business leaders began to back away from their earlier commitment to
reforms, Senate Republicans’ support evaporated, and reform legislation soon
slipped out of reach.12
Another factor in the defeat of the Clinton plan is what Paul Starr calls “the
American health policy trap.” In spite of the fact that a growing minority of
citizens are financially unprotected in sickness, the health care system
nonetheless satisfies enough people to make it difficult to change. The key
elements of the trap are employer-provided insurance whose beneficiaries are
unaware of its high cost; government programs that cover groups such as the
elderly and veterans who vote; and a vast financing system that enriches the
health care industry, creating powerful interests averse to change.13

2000s
Passage of the Patient Protection and Affordable Care Act in early 2010
marked a milestone on the road to universal health care. The law provides for
an increase in the number of Americans eligible for Medicaid, estimated by
the nonpartisan Congressional Budget Office to be about 16 million, and
better benefits for Medicare beneficiaries, especially for preventive care.
Primary care physicians treating Medicaid and Medicare patients are to be
paid at a higher rate than previously. Children are to remain covered under
their parents’ health insurance policies until they reach the age of twenty-six.
Private insurers must cover people with preexisting conditions and are barred
from canceling the policies of sick people and from placing caps on payments
to policyholders. Private insurers are required to spend 80 to 85 percent of
premium revenues on medical claims.14 The law also includes provisions for
rewarding quality of care.15 Most observers agree that reducing the growth
rate of federal health care expenditures is essential for any sustainable health
reform. The new law contains a number of provisions for moving in that
direction over the long term.
In the fall of 2013, when people first began signing up for the insurance
under the Affordable Care Act, serious glitches appeared in the website and
programs designed to facilitate enrollment. Other problems of cost and access
developed as well. If these problems are resolved and the ACA is fully
implemented, expansion of coverage will have been achieved and health
security strengthened for millions of Americans, moving the country closer to
the goal of universal health care. Nonetheless, much unfinished work lies
ahead. Upwards of 30 million citizens will remain uninsured and millions
more underinsured. And the challenge of reining in health care costs will
continue to loom large.

Figure 18. Between Darkness and Light, 2005, Mary McCleary 1951–, Courtesy
Moody Gallery, Houston TX © Mary McCleary 2005.

Who’s in darkness, Who’s in light in this dramatic scene? Are there any elements in
the picture that you associate with a particular time and place? Is a rescue taking place,
or are the figures in the water being abandoned? Who appears to be in charge of the
lifeboat, and where is his gaze directed? What appears to engage the interest of most of
the other figures in the boat? What could account for the position of the viewer? As the
viewer, what might account for your perspective, where might you be standing? Do you
feel that you are in a position to take part in the action?
How would the scene be different if there were more detail, if there were a full range
of middle tones rather than stark black and white? How would the scene affect you if it
were in full color and you could see the faces of the figures? By reducing the detail –
and thus the information in the picture, has the artist given it more or less of a grip on
our imaginations?
 Turning to the topic of this chapter, “Just Health Care,” imagine that the painting
represents the parties to the efforts to reform health care and that the lifeboat represents
health insurance. Would the figures in the boat be healthy or ill? Would the figures in
the water be uninsured? Are they healthy or ill? As the viewer, how might you determine
which of the figures in the water deserve to be in the boat? How might you determine if
some figures in the boat should be in the water? What concerns might the figures in the
lifeboat and the figures in the water have in common?

A Moral Failure?
Analyzing nearly a century of health care reform efforts in America, David
Rothman explores the question of why the United States, alone among
postindustrial democracies, has failed to enact a universal health insurance
program. Many factors have come into play including, as previously noted,
the American commitment to limiting governmental authority, as well as the
political power of health insurance companies, hospital corporations, labor
unions, pharmaceutical conglomerates, and organized medicine all defending
their financial stake in the existing system. Such political exigencies aside,
however, there is, Rothman observes, a confounding social context for this
failure: “what is under discussion is essentially a moral failure [italics added],
a demonstration of a level of indifference to the well-being of others that
stands as an indictment of the intrinsic character of American society .... How
could Americans ignore the health needs of so many fellow countrymen and
still live with themselves? How could a society that prides itself on decency
tolerate this degree of unfairness?”16
Americans place a premium on individualism and independence. They
generally give short shrift to interdependence and abhor dependence.
However, when it comes to disease and sickness, all citizens (and
noncitizens) are vulnerable and may be in need of help. As Deborah Stone
perceptively observes, “help is the way we live. We are born needing help,
we die needing help, and we live out our days getting and giving help. Help
and gratitude connect people. Without them, life would be terribly lonely.
Not belonging is misery. Getting help and, better yet, being able to count on
help make us part of the human family.”17 The organized provision of, and
equitable access to, quality health care is a decent society’s response to the
needs of the sick.
Thinking in terms of social needs and values has largely fallen out of favor
over the last three decades, which Michael J. Sandel (1953–) calls “the era of
market triumphalism.”18 During this era, “without quite realizing it, without
ever deciding to do so, we drifted from having a market economy to being a
market society. The difference is this: a market economy is a tool – a
valuable and effective tool – for organizing productive activity. A market
society is a way of life in which market values seep into every aspect of
human endeavor. It’s a place where social relations are made over in the
image of the market.”19
American society and culture are thoroughly commercialized, awash in
consumer goods. But a society is more than an economy, and health care is
not like consumer goods which are subject to supply and demand. It is,
rather, a public, social good, which cannot be adequately provided in an
economy solely based on private markets. As Benjamin Barber (1939–) puts
it, “The market is finally an instrument of private goods, which necessarily
overshadow public goods. Consumer judgment is private judgment (what do I
want?), while public good demands a degree of public judgment (what do we
need?). If the demands of both can be accommodated, a blend is possible, but
where the two are in opposition, as is often the case, the private must trump
the public .... Consumers simply are not the same thing as citizens.”20
Health care is an irreducible social good. It is intrinsically good,
indivisible, and held in common.21 Unlike commodities, social goods like
health care and education, public safety and equal treatment under the law,
are things that we as citizens value not only for our survival but for our
flourishing and our integrity as well. Health care is a good that is constitutive
of who we are as citizens of a democracy grounded in social equality and
respect for individuals in communities. When Americans look away from
tens of thousands who have no health insurance, and thousands more who are
underinsured, they are leaving many fellow citizens unnecessarily exposed to
the ravages of sickness. Leaving the provision of health care to the
marketplace condones the separation of “haves” who are deemed deserving
from “have nots” who are considered unworthy of respect and care. It defies
what Michael Walzer (1935–) calls “the social and moral logic of provision,”
according to which “Once the community undertakes to provide some needed
good, it must provide it to all the members who need it in proportion to their
needs.”22
In 1975, Howard Hiatt (1925–) asked provocatively who is responsible for
making the decision to apportion society’s medical resources that will benefit
not some, but all members of the society.23 Drawing on the metaphor of “the
commons” – a patch of grazing land set aside in medieval villages to be
shared by all the local farmers – Hiatt observed that today we lack a well-
conceived methodology for governing access to the medical commons.
Instead, we have appeals for resources for routine support of ongoing
research, education and patient care, and haphazard raids on the commons by
various disease-entity and organ-system lobbies. Needed, Hiatt argued, is a
framework for setting reasonable and responsible access to a system of
communal provision.

A Just Framework
In 1983, the President’s Commission for the Study of Ethical Problems in
Medicine and Behavioral Research, offered such an ethical framework in its
report, Securing Access to Health Care: The Ethical Implications of
Differences in the Availability of Health Services. The six core propositions
of the framework are as serviceable today as when they were drafted:

1. Because differences in the need for health care are, for the most part,
undeserved and beyond an individual’s control, society has an ethical
obligation to ensure equitable access to health care for everyone.
2. This societal obligation is not exclusive but is balanced by individual
obligations, that is, individuals ought to pay a fair share of the cost of
their own health care.
3. All citizens should have access to an adequate level of care that
should be thought of as a floor below which no one ought to fall
rather than as a ceiling above which no one may rise.
4. When private forces are sufficient to enable equitable access, there is
no need for government involvement, although the federal
government has the final responsibility for ensuring that health care
is available to everyone.
5. The cost of achieving equitable access ought to be shared fairly at a
 national level and should not fall disproportionately on particular
practitioners, institutions, or residents of particular communities.
6. Efforts aimed at containing costs should not focus on limiting access
to the least well-off members of the society.

The commission argued for an adequate level of care below which no one
should fall. The commission understood health care as a public good because
of its special role in “relieving suffering, preventing premature death,
restoring functioning, increasing opportunity, providing information about an
individual’s condition, and giving evidence of mutual empathy and
compassion.”24 This special importance distinguished health care from
commodities that could be bought at individual discretion within the
constraints of the purchaser’s budget. As a common good, it should be
equitably shared at an adequate level by everyone.

Security and Solidarity

Arguments for achieving a just distribution of health care services have been
advanced from a variety of theoretical vantage points – contractarian,
egalitarian, libertarian, and utilitarian.25 Here we will focus briefly on
mutuality and sociality as starting points for thinking about equity, as
articulated by Larry Churchill. In two books, Self-Interest and Universal
Health Care (1994) and Rationing Health Care in America (1987), Churchill
argues that the primary goals of an ethically sound health care system are
security and solidarity. In his view, these two goals are linked and
complementary. Security refers to personal well-being, whereas solidarity is a
sense of community. In matters of illness and health, solidarity emerges from
awareness of a common vulnerability; it encourages support for a shared
system of benefits and responsibility that creates personal security.
Churchill’s argument draws on the eighteenth century Scottish moral
philosopher David Hume (1711–1776)26 for whom prudent self-regard is not
selfishness but a studied sense of what is likely to be good for me and mine in
the long term. Such enlightened self-regard, Churchill argues, curbs the
exercise of immediate self-interest and leads to the recognition that only if I
back benefits that others need, are others in turn likely to support programs
that I too may need. Everyone must be assured access to health care if I am to
remain secure in the conviction that I will continue to enjoy freedom of
access. “The needs of others are ... part of my own security.”27
From this perspective, justice is impeded by a short-term view of self-
interest unconstrained by social reciprocity. But how does one come to
understand enlightened self-interest and the need for social reciprocity?
Churchill addresses this question in the language of sympathy and rights.
Drawing again on Hume, and also Adam Smith (1723–1790),28 he adduces
the notion of sympathy, construed as the natural human affinities
characteristic of social life. Although we have a strong sense of what sets
people apart, there are countless ways in which we are drawn to each other,
rely on each other, and help each other. Churchill advocates the deliberate
cultivation of what we have in common in support of a social ethic grounded
in solidarity and enlightened self-interest.
Churchill makes a case for a universal right to equitable access, based on
need alone, and regardless of ability to pay, to all the effective health care a
society can reasonably afford.29 His view challenges us to specify the scope
of the right, to articulate the meaning of “equitable” and “reasonable,”
including setting reasonable limits to a right to access. Churchill uses the
term “limit” as a moral concept to encourage us to reconsider the way we
think about fairness in the provision of health care. The emphasis is not on
amounts of money or units of service (“my share”) but on sharing a finite
resource that we all hold in common. What is required is clarity of mind and
heart about what health care is and what it should be for. Without a sense of
the purposes the American health care system is supposed to serve, we will
not be able to know whether we are achieving our aims. Churchill concludes:
“The chief issue in health care reform is not finding the right mix of
economic adjustments, it is finding our moral and political compass.”30

Summation
This chapter explored the issue of equity in the organization and distribution
of health care. Beginning with a discussion of various presidential attempts to
establish greater equity, it examined what Paul Starr calls “the American
health care trap” as well as the reasons why America, alone among
postindustrial democracies, has failed to enact a universal health insurance
program. Then, with a focus on recent work in the field, it considered how we
might find our moral and political compass amidst the complex network of
actors and institutions that determine how we organize and distribute health
care. Overall, this chapter emphasized that health care is an irreducible social
good that is constitutive of who we are as citizens of a democracy grounded
in social equality and respect for individuals in communities.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Throughout this chapter, you have read about several different
definitions of justice. What do you find useful or problematic in
these definitions? What does justice mean to you?
2. During the health care debates of the 1990s, the health care industry
launched a nationally televised advertising campaign urging against
reform efforts. What are some of the various interests that influence
health policy today?
3. This chapter begins with an epigraph from Rashi Fein: “A decent
medical care system that helps all the people cannot be built without
the language of equity and care.” Do you agree with this? Why or
why not?
4. What, in your opinion, are some of the challenges we face today
when thinking about the just distribution of health care?

Suggested Writing Exercise

What, in your opinion, would a just health care system look like? How does
your system depart from the current system in the United States? What are
some of the obstacles that might prevent your ideal system from becoming a
reality? Think about these questions, and then spend fifteen–twenty minutes
writing about your idea of a just health care system.

Suggested Viewing
 Escape Fire: The Fight to Rescue American Healthcare (2012)
Money and Medicine (2012)
Sicko (2007)
The Waiting Room (2012)

Further Reading
Jonathan Cohn, Sick: The Untold Story of America’s Health Care Crisis
– and the People Who Pay the Price
Paul Farmer, Partner to the Poor: A Paul Farmer Reader, ed. Haun
Saussy

Advanced Reading
Seyla Benhabib, The Rights of Others: Aliens, Residents, and Citizens
Norman Daniels, Just Health: Meeting Health Needs Fairly
Leonard M. Fleck, Just Caring: Health Care Rationing and Democratic
Deliberation
Michael Ignatieff, The Needs of Strangers: An Essay on Privacy,
Solidarity, and the Politics of Being Human

Journals
Health Affairs
Journal of Health Politics, Policy, and Law

Organizations and Groups

America’s Health Insurance Plans
http://www.ahip.org
Part IV Religion and Medicine
 Part Overview
Religion and Medicine
Part 4 of this book deals with religion. The subject of religion as well as
insights from religious studies and theology are underrepresented in medical
humanities. In contrast, history of medicine, literature and medicine, and
philosophy and medicine – Parts 1, 2, and 3 of this book – have long been
established in medical humanities. This is not the case with religion and
medicine. Indeed, some medical humanists have noted this absence and have
invited religious studies scholars and theologians to contribute to the field.
Writing in an editorial for Medical Humanities, Stephen Pattison observes,
“My own discipline, religious studies and theology, has not been particularly
fully represented in these pages. This, I believe, is unfortunate.”1 Pastoral
theologians have made similar calls.2
Yet it would be inaccurate to say that religion has been ignored in medical
humanities and in bioethics. In Chapter 22, we note that nearly all of the
“founders” of bioethics had some ties to religion and that many of them were
theologically trained but that in time, as bioethics became “secularized,” as
Daniel Callahan (1930–) puts it,3 it became more problem- and policy-
oriented as well as institutionalized and formalized. But medical humanities
(in contrast to bioethics), with its pedagogical emphasis on educating humane
doctors, did not secularize. If anything, spirituality is more important and
recognized today in medical education than, say, forty years ago.4 Moreover,
founding as well as contemporary medical humanists and bioethicists such as
Larry Churchill (1945–),5 Leigh Turner,6 Courtney Campbell,7 Gilbert
Meilaender (1946–),8 Laurie Zoloth (1950–),9 Andrew Lustig,10 Daniel
Sulmasy,11 Paul Ramsey (1913–1988),12 Richard McCormick (1922–
2000),13 William May (1928–),14 David Smith (1939–),15 Albert Jonsen
(1931–)16 wrote from, or were informed by, theological perspectives about
the relevance of such concepts as suffering, meaning, healing, mutual regard,
other-directedness, dialogue, empathy, caring, identity, and justice to patient
care.
 We explore this history in more detail in Chapter 22, but it is worth
pointing out that the Society for Health and Human Values, which would
later become the American Society for Bioethics and Humanities, was
launched by Ronald McNeur (1920–2005). McNeur was a New Zealander
with a graduate degree in mathematics who, after returning from service in
World War II, procured a doctoral degree in religious studies, became pastor
of a Presbyterian church in the Bay Area of San Francisco, developed a series
of lectures in which he attempted to “re-interpret the Christian faith for the
scientific age,” and then in 1959 took up the post of university pastor at the
University of California, San Francisco Medical School. Over the next ten
years, McNeur was the driver of the movement (then called “health and
human values”) during the period when it was conceived as a nonsectarian
ministry. Verlyn Barker (1931–) also played a key role.17 McNeur became
executive director of the Society for Health and Human Values at its birth in
1969 and remained a thoughtful, low-key, influential presence in the
Society’s work until Edmund Pellegrino succeeded him and established an
Institute on Human Values in Medicine.18
It is also worth noting that two of the coauthors of this book, Nathan Carlin
(a junior scholar) and Ronald Carson (a senior scholar who served as
president of the Society for Health and Human Values), were trained as
theologians. Reflecting on his vocation, Carson writes:

With hindsight, I realized that taking up my calling as a theologian in ...

medical humanities marked a move into a secular setting in which the
life story that had formed me, and that I was critically appropriating,
was one story among others and had no place of privilege. But it was
(and is) my way of making sense of things. It indelibly informs my
work.19

Carlin feels his own vocation unfolding in a similar manner. And we suspect
that many of the persons listed above could identify with Carson’s
reflections. Also, it should be noted that this list is not meant to be
exhaustive; rather, our point here is that, while there is more room for
religious studies scholars and theologians to contribute to medical humanities
as Pattison suggests, there is nevertheless a rich foundation on which to build.
And there seems to be more freedom in medical humanities than in bioethics
in this regard precisely because medical humanities is less formalized than
bioethics.20
Today there also are a number of places where the subject of religion is
regarded as important in medical contexts, such as (1) epidemiology of
religion and health (a subject we address in Chapter 20); (2) existential and
spiritual issues related to suffering, especially at the end of life (a subject we
address in Chapter 23); and (3) and clinical matters of “cultural competency”
in patient care (a subject we address in Chapter 19). The epidemiological, the
existential, and the clinical are all places where matters of religion and
spirituality have been explored in medical humanities writing. Some of the
major questions of the field or area of religion and medicine can be put this
way:

In what ways do various religious beliefs, experiences, and practices

intersect with particular health outcomes?
In what ways do persons and communities draw on religion and
spirituality to cope with, and to make sense of, disease and illness?
How can physicians and other health care professionals best attend to
matters of religion and spirituality in the context of patient care?
What is the relevance of the religious faith and/or spirituality of
caregivers for the practice of medicine?

These questions are all practical in some way. They address the ways in
which religion is (or is not) good for health, the ways in which religion helps
(or does not help) persons and communities cope and find meaning, the ways
in which physicians and other health care professionals can provide better
patient care, and the ways in which physicians and other health care
professionals maintain meaning in the face of suffering. Other questions,
such as learning about topics in religion and medicine simply for the sake of
learning (such as studying the anthropology of religion and medicine in
medieval Spain or in nineteenth-century Africa), also are important topics in
religion and medicine, but, for reasons of space, we do not include such
material in this section of the book.
A major purpose of this section of the book is to pull together material
from other fields to establish this subfield or area – i.e., religion and medicine
– within medical humanities. This approach is precisely how other fields and
disciplines have come into being. Religious studies, for example, emerged
out of many other fields, such as philosophy of religion, psychology of
religion, theology, history of religions, sociology of religion, and so forth.
Also, it is worth noting that one chapter in this section is different from the
rest. Chapter 21, which focuses on religious experience and mental health, is
intended not to pull together material from other fields but is intended to offer
methods from religious studies. Specifically, in this chapter idiographic
methods in psychology of religion are employed as a model to demonstrate
how medical humanists might pursue new topics in religion and medicine.
 19 World Religions for Medical Humanities
The fact that religion can be and often remains divisive is not a good
reason for excluding it from the conversation.1
– David Smith

Medicine needs a scientific basis – but it also needs a soul.2

– Daniel Sulmasy

Abstract
This chapter explores the world’s five great religious traditions:
Hinduism, Buddhism, Judaism, Islam, and Christianity. Beginning
with a discussion of some of the challenges involved in cultural
competency education, it examines why it is important to address
religion and spirituality in patient care in general; the central tenets of
each religious tradition; and the ways in which these tenets often
inform peoples’ understanding of health and illness. Then, with a
focus on clinical practice, it considers three ways of addressing
religion and spirituality in patient care.

Introduction
What should one do when a patient who is a Jehovah’s Witness refuses a life-
saving blood transfusion? How can one make sense of the heated debates
among Roman Catholics and secular bioethicists on the ethics of end-of-life
care? What should health care professionals know about the world’s religious
traditions? These types of questions often fall under the rubric of cultural
competency education, which has become increasingly common in health
professional schools. There are a number of guides or textbooks on the topic.3
Many of these define “culture” and “cultural competency” in some way,
provide a model of cultural competency (e.g., the Purnell Model for Cultural
Competence), and then apply that model to various groups such as “People of
German Heritage,” “People of South Asian Heritage,” and “People of African
Heritage” to derive clinically relevant material for health care professionals.
Such models often report whether, for example, a disease is more prevalent in
a given group or whether certain cultural assumptions or behaviors are likely
to be in conflict with Western biomedicine.
There are important critiques of cultural competency education. One
critique is that, because the time spent on it is so brief, this kind of education
in health professional schools spreads misinformation rather than promoting
“critical awareness.”4 In other words, sometimes a little knowledge can do
more harm than good. Knowing, for example, that many Jehovah’s Witnesses
often refuse life-saving blood transfusions does not mean than all Jehovah’s
Witnesses do, because some such patients might only voice their
disagreements with their tradition in private (i.e., not in front of other family
members).5 Another critique is that this kind of education can lead to an
increase of stereotyping,6 the opposite effect of the intention of this
education.7 Even if the information taught is correct, there is still the problem
of unintentionally inculcating an undesirable change in attitudes. For
example, knowing that a given group suffers disproportionally from, say,
diabetes could lead some health professionals to become “jaded” toward this
group because they experience these patients as “non-compliant.”8 A third
critique, which follows from the previous two, is that learning “facts” about
groups of patients could lead to less patient-centered care. As Patricia
Marshall writes,

[I]n the fields of bioethics and biomedicine, applications of the “culture”

concept are often simplified and do not provide a nuanced account of the
full implications of cultural systems for healthcare or medical morality
.... The consequence is a view of “culture” that is reified, too often
reducing culture to a list of behavioral traits or customs that might be
easily applied to individuals from diverse ethnic groups.9
These critiques hold a lot of weight when the advice being given in the name
of cultural competency is not rooted in sophisticated anthropological work.
What is culture? Clifford Geertz (1926–2006), a highly regarded
anthropologist, offered this definition: culture is “a system of inherited
conceptions expressed in symbolic forms by means of which [people]
communicate, perpetuate, and develop their knowledge about and attitudes
toward life.”10 Culture, in other words, is the world in which one grows up. It
is everything around us; it is the way we see things. Ideas about reality
influence how we perceive our surroundings, and these ideas in turn inform
our behavior. The study of these influences and perceptions is the work of
anthropologists. To do anthropology well, Geertz emphasized the importance
of “thick description,” what he defined as the process of “sorting out the
structures of signification.”11 This might be more plainly stated as paying
serious and rigorous attention to context.
An oft-cited illustration used to explain what thick description is involves
interpreting the experience of being winked at. Geertz notes that a person
being winked at cannot understand the meaning of a wink without context,
because winks can connote flirtation, irony, irritation, or something else
entirely (winks can be involuntary). Because behaviors have meanings in
contexts, it is not possible to interpret behavior outside of context. It follows
that because medicine – along with everything else – is practiced in a context,
the various behaviors that can be described in medicine cannot be understood
without attention to context. Whereas many professional models of cultural
competence fail to appreciate the significance of context, a model for
excellent anthropological work in medicine can be observed in the writings of
Arthur Kleinman (1941–), a medical anthropologist who was greatly
influenced by Geertz.12
This chapter is not a chapter in medical anthropology. It does not do thick
description of religious experience and medicine. But we do offer more than
lists. This chapter attempts to provide a foundation for students to begin to
think about religion and medicine by doing two things: (1) offering
background information, both historical and clinical, on the five great
religious traditions; and (2) offering practical advice on how to address
religious and spiritual issues in patient care. We begin by addressing the
rationale for teaching and learning about religion and spirituality in medical
humanities.

Seven Reasons to Address Religion and Spirituality

in Patient Care
In Spirituality and Patient Care, Harold Koenig offers six reasons for
addressing religion and spirituality in patient care: (1) many patients report
that they want their health care professionals to know something about their
religious or spiritual background; (2) patients often use religious or spiritual
beliefs and practices in order to cope; (3) patients who are hospitalized are
sometimes separated from their religious communities and, therefore, could
benefit from chaplaincy services; (4) religious beliefs can affect medical
decision-making as well as compliance; (5) there is a substantial amount of
evidence to suggest an association between religion and health; and (6)
religious involvement may be related to support-systems in patients’
communities.13 Christina Puchalski offers an additional reason: taking
spiritual histories can help clinicians understand their patients better by
helping them attend to spiritual suffering.14

World Religions for Health Care Professionals

What is “religion”? What is “spirituality”? Many religious studies scholars
have pointed out that defining religion is very difficult.15 Koenig defines
religion as “an organized system of beliefs, practices, and rituals of a
community ... designed to increase a sense of closeness to the sacred ... and to
promote an understanding of one’s relationship to and responsibility for
others living together in a community.” He defines spiritualty as “a more
generic personal quest for understanding answers to ultimate questions about
life and its meaning ... and may or may not lead to religious beliefs, rituals, or
the formation of a community.”16 This is only one way to define these terms;
there are many others. Indeed, there are no authoritative definitions.17
The world’s five great religious traditions are Hinduism, Buddhism,
Judaism, Christianity, and Islam. This chapter focuses on each of these
traditions. The following discussion will be split roughly equally between
describing some of the basic features of these traditions and conveying
information relevant to patient care.

Hinduism
Hinduism is the world’s third largest religion with about 850 million
adherents. It seems to have arisen in the Indus Valley around 1500 BCE. One
distinctive feature of Hinduism is that it has no single religious founder (such
as the Buddha), no single sacred text (such as the Qur’an), and no single
central authority (such as the Pope). While there is great diversity among
Hindus with regard to beliefs as well as practices, the Vedas (a collection of
various sacred writings) tend to inform much of what Hindus practice and
believe.18
Hindus often believe in a single, impersonal God (Nirguna Brahman). But
because it is difficult to conceive of an impersonal God, the idea of a personal
God (Saguna Brahman) arose, and this personal God is often imagined in
three ways: as Creator (Brahma), as Preserver (Vishnu), and as Destroyer
(Shiva). Manoj Shah and Siroj Sorajjakool note that Brahma, Vishnu, and
Shiva are not three separate gods but are three manifestations of Saguna
Brahman: “Ultimately, Hinduism asserts one Supreme God and the goal of
believers is to merge with this God.”19
Two key ideas in Hinduism are samsara and karma. Samsara refers to the
cycle of birth, death, and rebirth (reincarnation), and karma refers to a law of
causation that is linked to moral actions. Just as physics asserts that for every
action there is an equal and opposite reaction, karma asserts that all moral
actions have consequences but that sometimes the consequences of actions
are realized in the next life. Hindus believe that the atman (often translated as
soul) is immortal, while the body is mortal. The ultimate goal of Hinduism is
moksha or liberation from samsara, and ways to achieve moksha include
ridding oneself of karma by practicing various forms of yoga and by living a
moral life. The idea that the soul is immortal combined with the idea that
souls can be reincarnated as other forms of life such as plants or animals
leads to a basic attitude of nonviolence and respect for all life. In some
religious traditions of India that grow out of Hinduism, such as Jainism, some
persons will only eat fruit that has fallen from trees because they believe that
actively picking fruit from a tree is a form of violence.20
Hindu beliefs can affect how Hindus think about debates in bioethics.
Regarding death and dying, for example, on the one hand euthanasia and
physician-assisted suicide are often discouraged because suffering is
sometimes understood to be the result of karma. On the other hand,
prolonging life with artificial life support is also often discouraged because
this is seen as disrupting the pattern of samsara. A similar logic influences
how many Hindus think about abortion. Relatedly, some Hindus also oppose
organ donation on the grounds that the karma from a donor’s organ could
affect the karma of the recipient.21
Ayurveda, a medical tradition in India concerned with health and
longevity, arose in India in the sixth or fifth century BCE. Shah and
Sorajjakool note that Ayurvedic medicine has eight basic categories: (1)
general principles, (2) pathology, (3) diagnosis, (4) anatomy and physiology,
(5) prognosis, (6) therapeutics, (7) pharmaceutics, and (8) treatment protocol.
Ayurvedic medicine attempts to cultivate a balance among the body, the
mind, and the soul, and it attempts to do this by means of such techniques as
regulating diet, implementing exercise, and altering perception.22
Prakash Desai notes that “Hindu medicine never became divorced from the
rest of life’s pursuits, especially not from religious practice, as did medicine
in the West.”23 Because Hinduism is more of a tradition (a way of life) than a
faith (a system of beliefs), persons live out their traditions in ways that are
not always conscious. This includes practices related to Ayurvedic medicine.
For example, in Shamans, Mystics, and Doctors Sudhir Kakar (1938–) relates
a personal experience in this regard. Kakar notes that he has used a tongue
scrapper all of his life, a practice that he believes to be uniquely Indian, one
to which he had attached no religious significance. It was only later in life
while reading the first book of Caraka Samhita as a scholar of religion that
he discovered that his daily practice of tongue scrapping has its roots in
Ayurvedic medicine.24
Various scholars note that Ayurvedic medicine asserts that, on the one
hand, there are external toxins that can create imbalance among the basic
constitution of individuals. This tradition asserts that because people are
made up of vata (wind and ether), pitta (fire and water), and kapha (water
and earth), eating bad foods or breathing polluted air can create an imbalance
within an individual. On the other hand, there are also internal factors, such
as feelings of depression and anxiety, that can create imbalance.25 One writer
on Ayurvedic medicine notes that “an excess of fire will produce fever,
redness, burning, smells, and discoloration; an excess of wind will produce
paralysis, cramps, fainting, deafness, and joint pains; and the symptoms of
aggravated moisture are drowsiness, lethargy, swelling, and stiffness.”26
Individuals are made of different constitutions, and so treatment varies based
on one’s constitution. For example, a person whose constitution leans toward
vata responds well to hot beverages, whereas a person whose constitution
leans toward pitta responds well to cold beverages. As a way of restoring
balance, there is a practice called panchakarma, which consists of various
procedures such as purging.27
Shah and Sorajjakool point out some key facts about Hinduism that health
care professionals should know: (1) patients sometimes interpret disease as
the result of karma (this belief can affect various aspects of clinical care, such
as self-reports of pain); (2) the treatment of disease might include various
practices from Ayurvedic medicine; (3) many Hindus are lacto-vegetarians,
which affects both diet and medications; and (4) there are holy days in which
Hindus commonly fast. Other practical advice that they offer for health care
professionals includes removing one’s shoes when entering an Indian
household, not using one’s left hand when interacting with persons from
South Asia (the left hand is socially unclean), not placing Hindu scriptures on
the floor, and noting the exact time of birth for Hindu children.28 Koenig
notes that many Hindus prefer obstetric services to be performed by female
clinicians; bodies of the deceased are usually cremated (and that, after death,
bodies are often not left alone until they have been cremated); and prayer for
health is often not emphasized as in other traditions such as Christianity.29
Purnell notes that a common complication for Western health professionals
when caring for Hindu patients involves a difference in emphasis in the goals
of medicine. While Ayurvedic medicine tends to focus on prevention,
Western biomedicine tends to focus on restoration; the clinical upshot is that
Hindu patients often engage in various forms of self-medication/self-care
about which Western health professionals should inquire.30

Buddhism
Buddhism is a religion of India that grew up in the context of Hinduism.
Unlike Hinduism, Buddhism does have a founder: Siddhartha Gautama (the
Buddha). Gautama was born around 565 BCE to wealthy parents in modern
day Nepal. Legend has it that nine months before he was born his mother had
a dream in which she saw a white elephant (a symbol of holiness) entering
her. The legend also holds that Gautama could walk immediately when he
was born and that flowers grew in the place of his first footsteps. These
stories, obviously, are meant to attest to his remarkable conception and birth.
His mother died shortly after he was born.
As the story goes, a sage told Gautama’s father that Gautama would
become either a great king or a great holy man. Because his father wanted
him to become a great king (and not a great holy man) he shielded his son
from all things religious. He also sheltered him from the world. And so young
Gautama grew and took a family and bore a son of his own. But as fate would
have it, it seems as though Gautama was destined to become a holy man. One
day he took a journey outside of his palace and he saw, for the first time,
sickness, old age, and death. He was greatly disturbed by the suffering that he
saw and so took upon himself the religious life to find out why there is
suffering and how it might be overcome. He tried the path of meditating, but
this did not yield the answers. He then tried the path of asceticism, but this,
too, did not yield the answers. And so he embraced components from both
approaches, which he called “the middle way.” He decided to sit under a tree
until the mysteries of suffering were revealed to him. Under this tree, he
became the enlightened – that is, he became the Buddha.31
What did the Buddha teach? He is best known for his Four Noble Truths.
The first noble truth is that all of life is suffering. Some might regard this
truth as a pessimistic philosophy of life. But Kathleen Gregory (1946–)
writes, “To live within these conditions from which none of us can escape,
Buddhism suggests, is not to be pessimistic, but to have a ‘healthy attitude’ of
mind.”32 The second noble truth is that the cause of suffering is desire; the
third noble truth is that the suffering can be relieved by giving up desire. The
fourth noble truth is that desire can be given up by following the Eightfold
Path, which means practicing correct views, intent, speech, conduct, means of
working, endeavors, mindfulness, and meditation.33
Another key insight of the Buddha is the idea that nothing is permanent.
The things people generally want in life – youth, health, pleasure, money,
safety, friends, family, power – never stay the same. People age, friends get
sick, pleasure fades, stock markets crash, family members die, and power and
safety come and go. The Buddha taught that we need to cultivate detachment
from all things in order to avoid suffering. Another key idea is the notion that
there is no self. This teaching holds that the self, just like all things, is not
permanent or real in any ultimate sense.34
What is the upshot of these basic beliefs for clinical practice? Siroj
Sorajjakool and Supaporn Naewbood suggest that three key ideas affect how
many Buddhists think about health and disease. First, since Buddhists see a
strong connection between mind and body, as health is understood to be “the
harmonious balance of the body, mind, emotion, and the spiritual dimension
and therefore is not merely the absence of disease.”35 Health, then, is
ultimately a spiritual matter. Second, as in Hinduism, disease is sometimes
understood to be the result of karma from immoral actions in one’s current or
previous lives. Hindus and Buddhists also hold collective understandings of
karma (e.g., industry polluting the environment can cause both collective and
individual suffering). Third, because Buddhism teaches a respect for all life
and advocates nonviolent ways of being, many Buddhists oppose abortion.
But some Buddhists, Peter Harvey notes, believe that abortion is acceptable if
it is done out of compassion (e.g., to save the mother’s life).36 As the Dalai
Lama has said, “If the unborn child will be retarded [sic] or if the birth will
create serious problems for the parent, these are cases where there can be an
exception. I think abortion should be approved or disapproved according to
each circumstance.”37
Sorajjakool and Naewbood also offer some practical clinical advice. They
note that there is great diversity among beliefs and practices of Buddhists (the
main divisions are Mahayana Buddhism and Theravada Buddhism), and that
even within a given school of thought there will be considerable diversity.
They also note that many Buddhists practice various dietary restrictions.
Some practice vegetarianism, while others will not eat onions or garlic.
Paying attention to religious items such as sacred threads is important, and
such items ought not to be removed without the patient’s permission.
Regarding death practices, Buddhists often let the body lie for a period of
time, sometimes until a Buddhist monk leads the body to the temple for
funeral rites.38 Clinically speaking, this would mean not moving the body
immediately after death in the intensive care unit. Koenig writes that, “It is
extremely important to provide as much peace and quiet as possible for the
dying person, since state of mind at the moment of death is believed to affect
the quality of the next life.”39
Judaism
The father of the Jewish faith is said to be Abraham, who lived around 1750
BCE. God, or YHWH (pronounced Adonai), called Abraham into a
covenantal relationship, meaning that if Abraham would obey God’s
commands then God would multiply Abraham’s progeny. Abraham’s
descendants became known as Hebrews. After some time, they fell into
slavery in Egypt. While enslaved, Moses, another major figure in Judaism,
led them out from their enslavement. Jews believe that the Law (or Torah)
was subsequently given to Moses from God around 1125 BCE on Mount
Sinai. Other key events in Jewish history, as recounted in the Hebrew Bible,
include the militaristic conquest of Canaan sometime after the death of
Moses; King David’s rule (circa 1000 BCE); and the Babylonian Exile in the
sixth century BCE. The Rabbinic Period of Judaism (63 CE to 500 CE),
distinguished by the fact that it was inaugurated by the destruction of the
Second Temple by the Romans, was characterized by transforming Judaism
from a religion oriented around temple rituals to a religion focused on the
interpretation of texts. Another key feature of the Rabbinic Period is that
Jews were expelled to move all over the world (this is sometimes referred to
as the Diaspora). For hundreds of years Jews lived as minorities among
Christian and Muslim populations, often facing discrimination and
persecution. A notable exception to this was the Golden Age of Spain (900
CE–1200 CE) where Jews held prominent positions in the royal courts. The
most infamous persecution in modern times was the Holocaust (1938–1945),
where 6 million Jews were killed by the Nazis during World War II. In 1948,
the state of Israel was established to provide Jews a home. The creation of
this state and its borders was and still is rife with dispute and conflict because
creating this home for Jews meant moving Muslims, sometimes with force,
out of the land, and some Muslims have responded with force. What is
striking – and unfortunate – is that both groups believe that this land is
sacred, that God gave the land to them, and that God has authorized them to
use force in order to defend it.40
What are the central beliefs and practices of Judaism? The first thing to
note about Judaism is that it is a practice-oriented religion and not a belief-
oriented religion. Judaism, it is sometimes said, is a religion of deed, not
creed. Yet there are essential precepts in Judaism, such as (1) God is one, (2)
God is transcendent, and (3) God has entered into a covenantal relationship
with Jews. Judaism also upholds the sanctity of life and respect for the body,
so much so that some sacred texts in Judaism (e.g., the Talmud) command
Jews not to live in a town in which there is no physician.41
 Figure 19. Cycladic Idol from Syros, ca. 2000 BCE. National Archaeological
Museum, Athens, Greece. Photo Credit: Scala/Art Resource, NY.

How does this figure express the reserve you might experience when addressing a
person from a different culture with beliefs different from your own? With its shield-like
head and flat, angular anatomy, its arms crossed at the waist, this figure appears self-
contained, even enigmatic. These characteristics are seen in European and American
abstract sculpture of the early to mid-twentieth century. For comparison, search for
sculptures by Henry Moore and Jacques Lipchitz. However, this figure was created more
than four thousand years ago, in the Cyclades, a group of Greek islands in the Aegean
sea. The figure, and others like it, has been enigmatic to archaeologists, who have found
no evidence to determine if they are either idols or dolls.
Have you encountered any patients like this? Is she suffering or simply
uncommunicative? How would you expect her to respond to diagnostic questions? What
would you need to know to formulate questions this figure would respond to? For
practice, review the questions recommended in this chapter and ask a few of them, out
loud, to this figure. How does the figure’s reticence make you feel? How would a patient
who exhibits similar reticence make you feel?

Douglas Kohn points out that there are different sects or branches of
Judaism, such as Orthodox, Conservative, and Reform. These different
brands of Judaism attest to a wide range of beliefs, which is apparent on
issues such as abortion. Kohn suggests, for example, that in the Hebrew Bible
life is believed to have begun when an infant takes his or her first breath (cf.
Genesis 2:7; Job 33:4; Ezekiel 37:10), and so, he reasons, abortion should not
be regarded as the killing of a person but rather the destruction of a fetus
(since fetuses do not breathe). And death, Kohn also points out, is believed to
have occurred when a person stops breathing (in Hebrew, the word for
“breath” and the word for “soul” is the same). Yet many Orthodox Jews
oppose abortion, citing passages in the Torah that equate life not with breath
but with blood (see Leviticus 17:11). Kohn points out that, even if the fetus
can be regarded as human life by the logic of the Torah, it is certainly not on
par with the life of children and adults, as the Torah is clear that the death of
a fetus is not as great of a loss as the death of a person (Exodus 21:22; cf.
Oholt 7:6).42
A key theological belief in Judaism is that the body is a gift from God and
ought to be treated as such. Treating the body in a healthy manner is,
therefore, a moral mandate. This leads some Jews to discourage things such
as tattoos and body piercing. Historically, this also led some Jews to object to
autopsies and embalming as well as organ donation.43 Also, many Jews
observe a dietary system called kashrut. The foods that are acceptable to eat
are kosher and foods disallowed are treif. Animals with cloven hoofs, such as
pigs and dogs, are treif, as well as fish that lack scales or fins such as catfish
and shellfish. The Talmud also forbids mixing meat and milk from the same
animal during a single meal. Many people believe that the rationale for these
beliefs are related to health, but Kohn suggests that these restrictions arose
out a “discipline for Jewish living” rather than a concern for health (the
health outcomes of these various practices were unknown when they were
prescribed). But some practices, such as the command to wash one’s hands
seven times a day, did lead to better health outcomes during, for example, the
Black Death.44 Today, circumcision is sometimes defended on the grounds of
health outcomes (it is unclear if circumcision is beneficial, in terms of health
outcomes, in developed countries, but it has been shown to be beneficial in
reducing the spread of HIV/AIDS in Africa45). Yet Kohn also suggests that
circumcision and other such practices may be “construed” as health practices
today.
Kohn notes that there are a number of genetic diseases that are more
prevalent among Jews than other groups. These include Tay-Sachs disease,
Gaucher disease type 1, Bloom’s disease, familial dysautonomia, and cystic
fibrosis. Jewish couples, therefore, are often encouraged to undergo genetic
testing prior to conceiving a child to consider various strategies for
pregnancy. He also points out that some recent research suggests that breast
cancer and ovarian cancer are more prevalent among Jews.46 Koenig notes
that Orthodox (and some Conservative) Jews believe that women are impure
for a period of time after childbirth and menstruation, meaning that men will
not touch their wives during these periods; that keeping kosher is very
important; that a body should not be touched for some time after death
(usually eight to thirty minutes); that Jews may not touch dead bodies on the
Sabbath; and that the Sabbath begins on Friday evening and ends on sunset
the following day. He notes that Reform Jews are more relaxed about many
of these customs (some even eat pork), so it is, therefore, harder to make
generalizations about Reform Jews and to offer clinical advice to health
professionals.47 As Dan Cohn-Sherbok (1945–) writes, “In the modern world,
the Jewish community has fragmented into a wide range of different
groupings, each with their own interpretation of the tradition ... [but] all Jews
... embrace the Jewish emphasis on caring for the sick and those who
suffer.”48

Christianity
Christianity is the world’s largest religion. “Christian” means follower of
Jesus Christ. Jesus of Nazareth was born about 2,000 years ago (circa 2
BCE). His father Joseph was a carpenter or some kind of tradesman. When
Jesus was about thirty years old, he left his father’s trade (assuming he
worked with his father), was baptized by John the Baptist in the wilderness,
and gathered his disciples. According to Christian sources, for a short period
– either a year or three years (the Gospels disagree on the length of his
ministry) – it is said that he traveled around what Christians call the Holy
Land, preaching, teaching, healing, and performing miracles. The Gospels
suggest that he was perceived to be a threat by religious (Jewish) and political
(Roman) leaders, and so he was put to death under the supervision of a
Roman official named Pontius Pilate. Most Christians believe that Jesus was
resurrected from the dead three days later and that after a few brief
appearances to his friends and followers he ascended into heaven. Before he
ascended into heaven, Christian sources indicate that he commanded his
followers to go into the whole world proclaiming the “good news” of
salvation, baptizing them in the name of the Father, Son, and Holy Spirit
(Matthew 28:16–20).49
There are three major branches of Christianity: Roman Catholic, Eastern
Orthodox, and Protestant. Within Protestant Christianity, there are thousands
of different denominations. This means that there is a great deal of variety
regarding the specifics of what various Christians believe. Core beliefs that
many Christians hold in common include the following: (1) God is one; (2)
God is triune; (3) God is both immanent and transcendent; (4) Jesus Christ is
the incarnation of God, who is both fully human and fully divine; (5) Jesus
Christ became human to die (atone) for the sins of humanity; and (6) Jesus
Christ was raised from the dead, thus conquering death and giving hope to all
of humanity.50 Alister McGrath points out that the idea that salvation is
offered by Christ through the church is a core belief in Christianity, and that
salvation has many meanings, such as healing, restoration, and rescue. He
also points out that St. Augustine of Hippo, arguably the greatest theologian
of the Western church, used medical images to argue that “the Christian
church was to be conceived as a hospital – a place in which wounded and
broken people might receive care and healing.”51
Another core belief in Christianity, which is derived from Judaism, is that
human beings are created in the image of God (Genesis 1:27); also, in the
New Testament St. Paul asserts that the body is a Temple of the Holy Spirit
(1 Corinthians 6:19–20) – these scripture verses in the Hebrew Bible and the
Christian New Testament have led Christian theologians and ethicists to
argue that human life is sacred. This conviction has sparked debate in areas
such as contraception and abortion as well as end-of-life care.52 Indeed, some
of the most well-known cases in the history of bioethics have involved the
tensions between secular bioethicists and Roman Catholic theological
ethicists.53
In the Roman Catholic tradition, deriving from the writings of St. Thomas
Aquinas, the notion of “intention” is especially important, as it informs what
is called the doctrine or rule of “double-effect.”54 The doctrine of double-
effect makes a distinction between foreseeable consequences and intended
consequences. If, for example, the intent of an abortion is to end life, it is
wrong. On the other hand, if the intent of a surgery is to save a mother’s life –
from, say, uterine cancer – and the consequence is the death of the fetus, the
surgery can be viewed as morally justifiable. Is it wrong for health care
professionals to hasten death by giving a large dose of pain medication? It is
not necessarily wrong if the intent is to relieve suffering (so long as one does
not intend to cause death). It should be noted, however, that there is internal
debate within the Roman Catholic Church concerning the application of the
doctrine of double-effect (some, for example, hold that abortion is only
justified in cases of uterine cancer and ectopic pregnancy).
In recent decades, issues relating to sexuality have received a great deal of
popular and scholarly attention with regard to Christianity. David Larson
(1947–) notes that while Christians affirm that human sexuality has two
functions – a unitive purpose (making love) and a procreative purpose
(making babies) – Christians are divided as to whether it is morally
permissible to separate these functions. Since, for example, gay men cannot
procreate with each other, some Christians oppose so-called “homosexual
practice.”55 Abortion also sometimes separates these purposes. As Larson
observes, conservative Christians tend to oppose abortion (unless it is
performed to save the mother’s life) while liberal Christians affirm women’s
right to choose (though often with regret at the loss of the life of the fetus).56
In terms of clinical practice, a few words about diet are instructive. Many
Christians, perhaps the majority, do not observe dietary restrictions on the
grounds that St. Paul argued that all foods and drinks are acceptable (1
Corinthians 10:31). Yet some Christians abstain from alcohol, practice
vegetarianism, and/or observe certain fasts.
Beliefs about the sacraments and other such beliefs also can impact clinical
care. For centuries, the Roman Catholic Church unofficially taught that
unbaptized babies that die would not go to heaven but would instead go to
limbo, a place between heaven and hell. The upshot of this belief was that if
there were any chance that a baby would die at birth a priest would be called
to baptize the baby as quickly as possible.57 Another sacrament in the Roman
Catholic tradition is Holy Unction/Last Rites (also called the Anointing of the
Sick), where a priest will perform certain rituals with the dying patient in
order to help him or her cope. Koenig notes that Protestant pastors and
ministers, while they do not practice the sacrament of the Holy Unction, often
offer prayers at the bedside of sick patients and perform communion services.
And he notes that some Christians, such as Roman Catholics, revere certain
objects such as rosary beads and statues of the Virgin Mary, and that
practices relating to baptism vary across denominations.58

Islam
Islam is a monotheistic religion founded by the Prophet Muhammad (570–
632 CE) in the seventh century CE. He is believed to be the final Prophet in a
long line of prophets, a line that includes Abraham, Moses, David, Jesus, and
others. It is believed that the Prophet received a revelation from the angel
Gabriel at the age of forty. This revelation is known as the Qur’an, the central
sacred text of Islam. It also is believed that the Qur’an is the literal word of
God (Allah), spoken by Gabriel to Muhammad in Arabic over a period of
twenty-three years. The word “Muslim” means “one who submits to Allah.”
Because Gabriel spoke the language of Arabic to the Prophet, Arabic holds a
special place among Muslims in a way that, for example, Greek (the language
of the New Testament) or Aramaic (the language of Jesus) does not for
Christians. Next to the Qur’an, the Sunnah is the second foundational
doctrinal source. The Sunnah consists of written accounts of alleged words
and deeds of the Prophet.59
There are two main groups of Muslims: Sunni and Shi’a. Sunni Muslims
constitute the vast majority of Muslims (roughly 80 percent of all Muslims).
The Shi’a split from the Sunni after the death of the Prophet because of
disagreement as to who should succeed the Prophet. A third group of
Muslims constitute the Sufis. Sufism represents the major mystical branch of
Islam. Sufis also often identify as either Sunni or Shi’a. Within these basic
groups, there are many subgroups.60
There are a diversity of beliefs and practices among Muslims. However,
what is common to most is an affirmation of the Five Pillars of Islam. The
first pillar is the shahada, or a verbal affirmation that there is one God and
the Prophet is His messenger. The second pillar is salat, the practice of daily
prayers (five prayers are to be said every day, facing Mecca). The third pillar
is the giving of alms or charity (zakat). The fourth pillar is sawm, the practice
of fasting during the holy month of Ramadan (a month to celebrate the
revelation of the Qur’an to the Prophet). And the fifth pillar involves the
obligation for Muslims to complete the Hajj, a religious pilgrimage to Mecca,
at least once in their lives.61
Hamid Mavani notes that much of what Muslims believe about ethical
issues relating to health and disease is similar to what Jews and Christians
believe because all of these traditions are rooted in the faith of Abraham and
thus have similar sentiments. However, as Aasim Padela points out, modern
Islamic medical ethics writers ground their arguments in non-Judeo-Christian
sources, such Adab literature and the Shari’ah.62 Just as there is great
diversity within Judaism and Christianity, there is great diversity within
Islam. For example, just as Jews and Christians are divided on the ethics of
abortion, so, too, are Muslims. But what is unique about Muslims is when
they define ensoulment. While there is not an “official” definition, Mavani
notes that many Muslims hold that ensoulment occurs around forty-five days
after fertilization, meaning that many Muslims would especially oppose
abortion after this period. Mavani also notes that Muslims tend to have a
more positive view toward sexuality within marriage than many Christians
because Muslims do not insist that the procreative and unitive functions of
sex need to be combined.63 Historically, many Christians, such as St.
Augustine, have lamented the fact that sex is pleasurable at all, even in
marriage.64
Basic attitudes toward ethical issues in end-of-life care are similar to those
of Christians (allowing a patient to die is often viewed as acceptable whereas
the active hastening of death is not). It also is believed that, since God is the
author of life and death, both murder and suicide are wrong because they
interfere with God’s prerogative (Qur’an 3:145).65
Muslims have distinctive rituals of death and dying. Certain rituals are
believed to help the soul leave the body, such as (1) the recitation of the
shahada; (2) seeking forgiveness from God; (3) reciting certain passages from
the Qur’an such as Yasin and the Confederates; and (4) placing the soles of
one’s feet such that they face the Ka’bah in Mecca. Once the patient dies, he
or she must be buried (not cremated) quickly, according to certain rituals.
Specifically, the body must be washed, shrouded, and prayed over, and dead
bodies are treated as though they were alive in that gender prohibitions
relating to modesty still ought to be recognized. These rituals usually are not
performed for babies less than four months old.66
Related clinical issues involve matters of modesty, prayer, and diet. Many
Muslims do not eat pork or take medication derived from pigs. Many will
only eat or use halal (i.e., permitted) products.67 The injunction not to
consume pork leads some, but not all, Muslims to reject certain medical
devices such as certain biological heart valves that utilize material derived
from pigs. Koenig notes that fathers of infants often whisper prayers into the
ears of babies when they are born; that special fasting and prayers occur
during the month of Ramadan; and that religious services are typically held
on Friday.68
Concluding this section on world religions for health professionals, we
would do well to remind ourselves that simply learning a list of do’s and
don’t’s with regard to religious traditions is inadequate. As Abdulaziz
Sachedina (1942–) notes with regard to Islam, “Spiritual care begins in
providing settings that permit, and preferably encourage, religious
observance .... [and] also involves supporting appropriate decision-making.
Healthcare practitioners need the capacity to provide patients and families
with information that is appropriate to religious, communitarian ethical
decision-making, and to respect the process such decision-making must
take.”69

How to Address Religion and Spirituality in Patient

Care: Three Approaches
We conclude by offering three models of how to attend to religion and
spirituality in patient care. We present (1) a general list of advice derived
from the previous discussion; (2) a list of questions suggested by medical
anthropology; and (3) the “FICA” model of taking a spiritual history.

Some Clinical Advice

The clinical implications of our discussion of world religious traditions can
be summed up as follows:

1. Ask about dietary needs.

2. Ask about fasting.
3. Ask about daily religious practices (such as prayer and meditation
practices). Try to accommodate these needs as much as possible.
4. Ask about holy days and how they might be relevant to their care.
5. Be aware of modesty concerns, and accommodate them as much as
possible.
6. Do not touch or remove objects that may appear to be sacred.
7. Ask patients if they are aware of any of their religious beliefs that
may affect their care or clinical decision-making, such as
prohibitions against blood transfusions or other medical procedures.
8. Ask patients and families how they prepare for birth, and what rituals
are important to them.
9. Ask patients and families how they prepare for death, and what rituals
are important to them.

Giving specific advice is a valuable tool, but it is no substitute for addressing

existential and emotional issues and it can also fall prey to the critiques of
cultural competency offered in the introduction of this chapter.
Arthur Kleinman’s Model
Another approach, offered by medical anthropologist Arthur Kleinman,
involves asking certain culturally sensitive, open-ended questions:

What do you call your problem? What name do you give it?
What do you think has caused your problem?
Why do you think it started when it did?
What does your sickness do to your body? How does it work inside you?
How severe is it? Will it get better soon or take longer?
What do you fear most about your sickness?
What are the chief problems your sickness has caused for you
(personally, in your family, and at work)?
What kind of treatment do you think you should receive? What are the
most important results you hope you will receive from the treatment?70

Joan Anderson et al. note that these questions do not have to be (and perhaps
should not be) used as direct questions to be asked but could/should instead
be used as “listening cues.” When, for example, a patient mentions something
about one of these questions, the physician can follow up with a question that
probes a little deeper by asking for an elaboration or clarification.71 The
strength of this approach is that it does not require health care professionals
to learn all of the intricate details about, say, Christian Science beliefs
regarding illness and disease because these questions are open ended. A
weakness is that it is not specific enough about spirituality and religion.

The FICA Model

Christina Puchalski has put forth a well-known method of taking a spiritual
history, called “FICA.”72 It has received considerable attention in recent
years, perhaps because of its applicability and recall-ability. “F” concerns
asking patients about their faith (e.g., Are you religious? Do you attend
religious services?). “I” concerns asking patients about the importance of
their faith or belief (e.g., Are religious beliefs a significant part of your life?).
“C” concerns asking patients about their faith community (e.g., Are there
people from your religious community who can support you in your time of
illness?). “A” concerns how patients would like their faith addressed in their
care (e.g., Do you want your physician to attend to your faith concerns – if
so, how?). Pulchalski has learned that simply being present goes a long way
with patients and that it is important to refer to chaplains. She has also found
that it is important to make time and space for activities such as ritual, prayer,
guided imagery, and mediation. This model has a number of strengths: It is
brief, specific to spirituality and religion, and is open-ended.

Role Playing
This is a role-playing exercise. Students should get into groups of three. One student
should pretend to be an internal medicine physician, attending to Ms. Smith. The second
student should play the role of Ms. Smith. The third student should simply observe. The
role of the third student is to observe what seem to be helpful (and unhelpful) word
choices. In other words, which word choices feel awkward, and which word choices
seem to lead to more connection and sharing?
Ms. Smith is:“[A] forty-seven-year-old single woman, in whom the sudden
appearance of widespread metastatic breast cancer caused her to be hospitalized and near
death .... But it is not primarily the weakness, profound anorexia, and generalized
swelling, as distressing as these things are, that are the source of her suffering, but the
loss of control an inability to prevent the evaporation of her career, whole brilliant
promise had finally been realized a few months earlier.”73
You, as her internal medicine physician, have seen Ms. Smith many times before, and
you have a good relationship with her. You are prompted to take a spiritual history after
hearing Grand Rounds on the topic.
Students should switch roles and do the exercise again. All three students should have
a chance to play all three roles.
Debriefing Questions

1. How did Ms. Smith interpret her illness?

2. How did Ms. Smith talk about her work life?
3. What role did religion or spiritually play in Ms. Smith’s life?
4. What did it feel like to be listening to Ms. Smith’s story?
5. Did you, as the internal medicine physician, use any awkward phrases or words
choices? If so, how would you reword what you said?

Conclusion
This chapter offered historical and clinical information on the five great
religious traditions of the world, as well as practical advice on addressing
religion and spirituality in patient care. While realizing the limits of cultural
competency education, the purpose of this chapter was to help students to
learn about religion and medicine. This chapter also mentioned, in passing,
reasons why addressing religion and spirituality in patient care is important
(e.g., there appears to be an association between religion and health).
Subsequent chapters will explore such reasons further.

Summation
This chapter explored the world’s five great religious traditions: Hinduism,
Buddhism, Judaism, Islam, and Christianity. Beginning with a discussion of
some of the challenges involved in cultural competency education, it
examined why it is important to address religion and spirituality in patient
care in general; the central tenets of each religious tradition; and the ways in
which these tenets come to inform people’s understanding of health and
illness. Then, with a focus on clinical practice, it considered three ways of
addressing religion and spirituality in patient care. Overall, though, this
chapter attempted to emphasize that religion and spirituality play an
important part in many people’s lives, and that a greater attention to this fact
can help us to better understand and care for patients.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. What role does religion play in your life?
2. How might your own religious or spiritual commitments affect your
worldview as a health care professional?
3. Some people think that there is not enough time to take spiritual
histories, and that there are more important matters to which to
attend. What do you think about this objection?
4. To what extent should requests made by patients based on religious
 commitments be accommodated? For example, if a female Muslim
patient requests female caregivers, to what extent and under what
circumstances, if any, should this request be accommodated?

Suggested Writing Exercise

In Cross-Cultural Caring, Nancy Waxler-Morrison and Joan Anderson
describe a situation where a physician called a social worker about a case of
potential child abuse.74 A two-year-old Vietnamese boy presented with
trouble breathing. When examined, a physician discovered bruises all over
his back. When a social worker inquired about the case, she found that the
family was practicing “spooning,” a common treatment for colds in Vietnam
that entails pressing a silver spoon up and down a child’s back. The mother of
the child said that they wanted to try this approach first because they did not
have a lot of money to spend. From the perspective of the mother, write a
letter to the social worker, explaining your side of the story.

Suggested Viewing
Stanford University’s World’s Apart Documentary Film Series
http://medethicsfilms.stanford.edu/worldsapart/

Further Reading
Karen Armstrong, The Case for God
Huston Smith, The Illustrated World’s Religions

Advanced Reading
Mark Cobb, Christina Puchalski, and Bruce Rumbold, eds., The Oxford
Textbook in Spirituality and Health
Kathleen Culhane-Pera, Dorothy Vawter, Phua Xiong, Barbara Babbitt,
and Mary Solberg, eds., Healing by Heart: Clinical and Ethical Case
Studies of Hmong Families and Western Providers
Clifford Geertz, The Interpretation of Cultures
 Arthur Kleinman, The Illness Narratives
Harold Koenig, Spirituality in Patient Care
Jing-Bao Nie, Medical Ethics in China: A Transcultural Interpretation
Siroj Sorajjakool, Mark Carr, and Julius Nam, eds., World Religions for
Healthcare Professionals
Bryan Turner, ed., Routledge Handbook of Body Studies

Journals
Anthropology and Medicine
Journal of the American Academy of Religion
Journal of Medicine and Philosophy
Journal of Religion and Health
Social Science and Medicine
Studies in Medical Anthropology

Programs
The University of Chicago Program in Medicine and Religion
https://pmr.uchicago.edu/

Online Resources
Karen Armstrong TED Talk
http://www.ted.com/talks/karen_armstrong_makes_her_ted_prize_wish_the_charter_f
Onora O’Neill on Trust – Philosophy Bites
http://ec.libsyn.com/p/1/4/7/147bef66fc0b192f/Onora_ONeill_on_Trust_originally_o
d13a76d516d9dec20c3d276ce028ed5089ab1ce3dae902ea1d01c08233d0ce547046&c
The Center on Religions and the Professions
http://www.religionandprofessions.org/other-resources/professional-
associations-faith-groups/
Healthcare Chaplaincy
http://www.healthcarechaplaincy.org/
Health Ministries Association
http://www.hmassoc.org/
Interfaith Health and Wellness Association
http://www.ihwassoc.org/
Georgetown University’s National Center for Cultural Competence
http://nccc.georgetown.edu/body_mind_spirit/resources.html
The George Washington Institute for Spirituality and Health
http://www.gwumc.edu/gwish/index.cfm
 20 Religion and Health
Our spiritual judgment ... must be decided on empirical grounds
exclusively. If the fruits of life of the state of conversion are good, we
ought to idealize and venerate it, even though it be a piece of natural
psychology; if not, we ought to make short work with it, no matter what
supernatural being may have infused it.1
– William James

Abstract
This chapter explores the field of religion and health. Beginning with
a discussion of the historical roots of the field, it examines the
contributions of key authors Jeffrey Levin and Harold Koenig; the
major approaches and instruments that have been used to study the
relationship between religion and health; and the critics of these
studies. Then, with a focus on clinical practice, it suggests that paying
attention to the way that religion functions in patients’ lives can help
us to better care for patients.

Introduction
A woman traveled into town one morning to go shopping and began to feel
ill. She felt pain in her bones, felt nauseated, and had a headache. She also
felt as though she were going to faint. It occurred to her that these were
symptoms of the flu. The woman then thought about the mind-cure
techniques she had been learning, and decided to try them. After she returned
home, she asked her husband to call a doctor to come the next morning, as
she wanted to continue trying her mind-cure techniques during the night. She
next describes one of the most beautiful experiences of her life:

I cannot express it in any other way than to say that I did “lie down in
the stream of life and let it flow over me.” I gave up all fear of any
impending disease; I was perfectly willing and obedient. There was no
intellectual effort, or train of thought. My dominant idea was: “Behold
the handmaid of the Lord: be it unto me even as thou wilt,” and a perfect
confidence that all would be well, that all was well. The creative life was
flowing into me every instant, and I felt myself allied with the Infinite,
in harmony, and full of the peace that passeth understanding. There was
no place in my mind for a jarring body. I had no consciousness of time
or space or persons; but only of love and happiness and faith. “I do not
know how long this state lasted, nor when I fell asleep; but when I woke
up in the morning, I was well.”2

One might consider this account, found in William James’s (1842–1910) The
Varieties of Religious Experience, to be somewhat trivial, as James himself
concedes, and one might also note, as James did, that the woman may have
been deluded. However, how do we know that the universe and reality is not
more complex than what science allows for – how do we know that
techniques such as mind-cure do not work? Could it be that science gives us
access to some domains of reality whereas religion gives us access to other
domains of reality, and that no single system can fully account for the
complexity of reality? James suggests that this might be the case.
Writing shortly before James, Francis Galton (1822–1911) was an early
psychologist of religion who studied religion quantitatively (i.e., with
statistics, questionnaires, and rating scales). He, like James, was interested in
the fruits of religion but, in contrast to James, had a negative bias toward
religion. He therefore sought to show, empirically, that religion does not
provide benefits – health or otherwise. If prayer were associated with
longevity, Galton suggested that male members of royal households should
have longer lives than the average male because the public prays for these
persons on a daily basis, but he observed the life span of male members of
royal households from 1758 to 1843 and found that their lives were among
the shortest of male members of affluent classes. He also studied the
biographies of many eminent religious leaders (e.g., Martin Luther, John
Calvin, and John Donne) and found that such persons tend to live shorter
lives than other eminent men. And he found that religious buildings such as
churches have no special protection, statistically speaking, against hazards
such as earthquakes and fires.3
Galton’s quantitative methods were not sophisticated, and his agenda
certainly biased his observations. While today’s empirical methods are much
more sophisticated, bias still remains. Indeed, one of the largest financial
supporters of the field of religion and health is the John Templeton
Foundation. The back cover of the second edition of Harold Koenig’s
Spirituality in Patient Care reads:

Templeton Foundation Press helps intellectual leaders and others learn

about science research on aspects of realities, invisible and intangible.
Spiritual realities include unlimited love, accelerating creativity,
worship, and the benefits of purpose in persons and in the cosmos.4

This press, in other words, solicits research that will provide empirical
support to the benefits of spirituality. Just as one can be skeptical of Galton’s
bias, one can be skeptical of the Templeton Foundation’s bias and the
research projects it funds. But, in fairness, it is important to note that the
Templeton Foundation funded Herbert Benson’s multimillion dollar study of
prayer that found that intercessory prayer had no effect among 1,800
coronary-bypass surgery patients, a modern result consistent with Galton’s
previous findings.5 The publication of this paper speaks to the integrity of the
Templeton Foundation.
Foundations and individual researchers will always have a bias when it
comes to religion – religion is simply too emotional a topic to be studied in
an unbiased way. This suggests that the goal for researchers should not be to
eliminate bias but rather to manage bias appropriately. This chapter tries to
manage any potential bias by attempting to provide an even-handed
introduction to the field of religion and health.

An Overview of Religion and Health

The field of religion and health, just like any other field, can be defined in
various ways. We understand the field as a combination of empirical
psychology of religion and epidemiology. If one were to choose a single text
to represent the field, it would be The Handbook of Religion and Health,
edited by Harold G. Koenig, Dana King, and Verna Carson.6

Common Topics and Sample Findings in the Field

There are a number of questions that are routinely asked in the field of
religion and health. Does going to church have an effect on heart disease,
hypertension, or cancer? Can healthy behaviors, such as not smoking, be
correlated with religious affiliation? To what extent is religious involvement
associated with disability? What are the health benefits of intercessory
prayer? Do older adults who identify as religious or spiritual age better than
those who do not identify as such? To what extent and in what ways does
religion help individuals cope with various life stressors? Can meditation
help individuals mitigate pain? These are but a few questions that intimate the
nature of the field. The field attempts to find statistical associations – positive
or negative – between various dimensions of religion and/or spirituality and
specific measures of health.
In a 2012 literature review of the field, Hisham Abu-Raiya and Kenneth
Pargament (1950–) offer a summary of some of its methodological issues as
well as some of the key findings in recent years. The table below relays some
of these findings.7

Sample Findings from Religion and Health Studies

Variable Measured Positive Health Outcomes

Religious involvement (e.g., Religious involvement is

self-rated religiousness, associated with lower
endorsement of religious hypertension, lower rates of
beliefs, participation in substance abuse, lower rates of
religious rituals) overall mortality

Religious motivation (i.e., Intrinsic religious motivation

 intrinsic versus extrinsic) positively correlates with
sociability, sense of well-being,
and tolerance

Religious coping (e.g., Religious coping strategies are

negative or positive coping more important than available
strategies) social support in helping patients
adjust to a diagnosis of cancer

There are hundreds of studies attempting to investigate the links between

religion and health; this table is only intended to intimate the kinds of
associations that have been found.

Historical Roots of the Field

As noted, the field of religion and health can be seen as growing out of the
discipline of psychology of religion. William Parsons dates the founding of
psychology of religion to the 1880s and cites in this regard the pioneering
work of William James, Sigmund Freud, G. Stanley Hall, C. G. Jung,
Wilhelm Wundt, and others. Wundt, widely regarded as the founder of
experimental psychology, developed with his students (especially Hall) a
statistical approach to psychology of religion. Such empirical methods would
eventually come to dominate the discipline of psychology.8 Indeed, as Ralph
Hood, Bernard Spilka, Bruce Hunsberger, and Richard Gorsuch point out,
empirical (or quantitative) psychology – in contrast to conceptual (or
interpretive) psychologies like those of Freud and Jung – emerged in the
1950s and set the discipline of psychology on firm scientific grounds. The
empirical psychology of religion emerged as a part of this larger trend, out of
which the field of religion and health also emerged.9

Institutionalizing the Field: Two Key Events

Another major event in establishing the field of religion and health involved
the founding of the Journal of Religion and Health by the Blanton-Peale
Institute in 1961. In the inaugural edition of the journal, George Anderson
wrote an editorial laying out the journal’s rationale to provide a space for the
correlation of medicine, the behavioral sciences, theology, and philosophy
around the subject of improving health:

Man is more than a mere biological entity. He is matter harnessed to a

spirit. Anthropology, sociology, theology, and medicine shed light on
the nature of man and help to make him comprehensible; the behavioral
sciences especially contribute valuable knowledge to a scientific
understanding of human beings and to the total health of man. While it
may be desirable to have a division of labor, it is obviously essential that
there be a synthesis of goals. We must search for ultimate rationales and
goals for those who work for the advancement of science and health.10

This journal continues to provide a venue for the latest research in the field.
Another major event was the publication of the Handbook of Religion and
Health, first published in 2001. This volume is 700-plus pages in print and
analyzes more than 1,200 studies and 400 review articles on religion and
health. It marks the first attempt to gather the current literature on religion
and health into a single volume. In the “Foreword” of the volume, Jeffrey
Levin notes that there was a once a time when those studying the linkages
between religion and health could have sat around a single conference table,
but now (i.e., in 2001) this is no longer the case, thanks in large part to the
editors of the handbook (especially Harold Koenig). Levin also notes that the
field receives national and international attention in the media and many
different fields hold conference panels on the topic. Because of this success,
Levin writes, perhaps too optimistically, that “[a]s those of us who have
labored in this field for many years have long suspected, the relationship
between religion and health, on average and at the population level, is
overwhelmingly positive. Now we can say, finally, that we know this to be
true.”11

Institutionalizing the Field: Two Key Authors

While there are many persons working in the field of religion and health, two
names in particular stand out, names that we have already mentioned: Jeffrey
Levin and Harold Koenig.
Larry Dossey credits Levin with establishing epidemiology of religion,
noting that, while many persons see such a connection as obvious, many
physicians have denied and sometimes even ridiculed such a relationship.
“Levin’s findings,” Dossey writes, “have created immense interest in the
medical profession because they rest on a powerful word: data.”12 Levin
became interested in the epidemiology of religion as a graduate student at the
School of Public Health at the University of North Carolina in Chapel Hill in
the early 1980s. In a course titled “Culture and Health,” he read two articles
on the association of religion and health that suggested a positive association.
Shocked and intrigued, he found the direction for his life’s work.13
Levin employs the term “epidemiology of religion” and, in explaining what
he means by this term, notes that epidemiologists make generalizations that
“are generally expressed (1) on average, (2) across a population, and (3) all
things being equal.”14

Sample Substantive Findings from Levin’a God,

Faith, and Health15

Association Finding

Religion In Missouri, death rate due to ischemic heart

and Heart disease among Reorganized Church of Latter-Day
Disease Saints was 80 percent lower than other Missourians.

Religion A study in California of non-religiously affiliated

and Blood adults with Chinese, Filipino, and Japanese ancestry
Pressure found that hypertension was double than those with
religious affiliation. Similarly, a study of Buddhist
priests in Japan found that these priests were half as
likely to die from hypertension as other Japanese
men.

Religion A study at the University of Texas Medical Branch

and Lung found that Jewish men are 60 percent less likely to
Cancer die of lung cancer than non-Jewish men (i.e.,
 Gentile men).

Religion Meta-analysis demonstrates that actively religious

and persons live longer than non-religious persons, even
Longevity when controlling for behaviors that religions tend to
proscribe (e.g., drinking and smoking).

Levin also notes that epidemiology cannot tell us if smoking caused Patient
X’s emphysema or if Patient X will get better if he stops smoking now. This
is because epidemiology gives us information about populations, not about
specific cases. While epidemiology cannot tell us anything about Patient X, it
can tell us that emphysema is found in significantly greater rates among those
who smoke as compared with those who do not. Similarly, epidemiological
research has demonstrated that factors such as diet and exercise are
associated with good health. Levin was one of the first persons to suggest,
from a specifically epidemiological point of view, that religion could have a
positive effect on health like diet and exercise.
 Figure 20. Praying Skeleton, 1733, William Cheselden 1688–1752, Wellcome
Library, London.

Is this figure is praying? Isn’t it too late? How might you interpret this drawing as
more than simply ironic? Can you recall any recent disasters whose victims might have
identified with this figure? Regardless of one’s personal attitude toward religion, this
chapter urges us to take the religious beliefs of patients seriously and to observe how
religion functions in their lives. How can we determine if religion might be helping or
hurting in a given situation?
How is this figure similar to or different from the skeleton contemplating a skull that
accompanies Chapter 12? One difference is that Vesalius’s skeleton is in direct contact
with the skull it contemplated, while the object of this skeleton’s prayer is outside the
frame. Another difference is how each image was created. The artists Vesalius employed
drew directly from cadavers and skeletons he prepared. This image appeared almost 200
years later in Osteographia: Or, The Anatomy of Bones, published in 1733 by William
Cheselden, an English surgeon and teacher. For greater accuracy, Cheselden prepared
skeletons, and then employed artists to copy them using a camera obscura, which is a
large camera-like device that projects an image on a sheet of paper. Since Cheselden
took such pains to be scientifically accurate, why do you think he would have included
this figure that is appealing to something outside the scientific realm?

Koenig, a psychiatrist, built on the foundation that Levin laid. In

researching the literature on spirituality and health, he found hundreds of
studies with a positive association. But he also discovered that many of these
studies were weak in terms of methodology (most were cross-sectional
studies) and that a major flaw in spirituality and mental health research in
particular is that much of it is tautological (spirituality is often circularly
defined as good mental health). Studies in recent years are much stronger
methodologically, and they, too, are establishing a positive association. But
Koenig also points out that religion can negatively impact health and has
noted a common misconception about the implications of this research:
“there is no evidence,” he writes, “from clinical trials that if patients become
more religious only in order to be healthier that better health will result. The
research shows that persons who are religious may have better health
outcomes. These persons are usually religious for religious reasons (not
health reasons).”16
If Levin (as a doctor of philosophy) was instrumental in bringing the field
of religion and health into the vision of mainstream medicine by identifying
and theorizing the core issues, it was Koenig (as a doctor of medicine) who
raised the status of the field in the eyes of physicians by launching a
rigorously designed research program.

Measuring Religion and Health: Approaches and

Instruments
In a major review article, Daniel Hall, Keith Meador, and Harold Koenig
analyze the major approaches and instruments that have been used to study
the relationship between religion and health.17 We present some of these to
intimate how knowledge in the field of religion and health is produced.
Hall, Meador, and Koenig note that there are currently more than 100
psychometric instruments that attempt to measure “religion” and/or
“spirituality.” Often religion is measured in behavioral terms: How often does
a subject go to church, pray, fast, sing in the choir, read sacred texts, and go
on mission trips? How much money does a subject give to religious
organizations? Questions such as these are often included as a single-item
question or as multi-items on surveys or questionnaires. They also note that
because these items are convenient to use, these types of questions have
produced some of the strongest evidence for an association between
religiousness and various positive health outcomes, such as longer life, lower
disability, faster recovery from depression, and improved sense of
satisfaction.
Despite the consistency of these findings, it is unclear what to make of
them. Are these associations merely the result of the social connections
provided by religious organizations?18 Could there be a selection bias
involved?19 In doing such empirical research on religion and health, there is a
tradeoff between reliability (i.e., the consistency of a measure, or the degree
to which a measure will be reproducible) and validity (i.e., the accuracy of a
measure, or the degree to which a measure corresponds with the world as it
is). Measuring religious activity can achieve high levels of consistency and
reliability, but is weekly church attendance a valid way of measuring
religiousness?20 What about people who are “spiritual but not religious,” that
is, persons who consider themselves deeply spiritual but are not affiliated
with any religious institution?21 Measuring religiosity according to
institutional affiliation or involvement would not capture their spiritual
commitment. Thus, a significant problem with this type of research (i.e.,
research that measures religious behavior such as attending church) is that, as
the ways of measuring become more sophisticated (e.g., designing studies to
account for unchurched spirituality), weaker associations can result.
Another way to measure religiousness is qualitative and focuses on an
individual’s personal religiosity. For example, such research might include
questions such as “To what extent do you consider yourself a religious
person?”22 Hall, Meador, and Koenig note that these questions seem to be
more valid in comparison with questions about weekly attendance at religious
organizations, but the findings are not as reliable and consistent because there
is an inherent subjectivity in such assessments.
Other approaches include measurements of religious motivation and
orientation. Such approaches often draw on Gordon Allport’s distinction
between intrinsic and extrinsic religion (I/E) where a person who is
extrinsically religious “uses” religion for instrumental reasons (such as when
a person attends church to find a partner) while a person who is intrinsically
religious is religious for the sake of being religious.23 Allport and Ross
developed a scale to measure religiousness in terms of intrinsic and extrinsic
factors. Subjects mark levels of agreement with statements such as “I try hard
to carry my religion over into all my other dealings in life” (intrinsic
measure) and “One reason for my being a church member is that such
membership helps to establish a person in the community” (extrinsic
measure).24 This approach has been heavily criticized by Kirkpatrick and
Hood on the grounds that Allport’s model lacks conceptual clarity.25 In any
case, it is worth pointing out that a number of tools have been developed in
this tradition, such as the Santa Clara Strength of Religious Faith
Questionnaire.26

Discussion Questions
1. How do you define religion and/or spirituality?
2. If you are religious and/or spiritual, to what extent does your religiousness or
spirituality affect your psychological well-being? Do you find that religion and
spirituality helps you to cope? Or do you find that religion and/or spirituality
 makes you more anxious?

Other instruments have been developed to measure religiousness multi-

dimensionally. These scales attempt to incorporate various types of
measurement into a single instrument. Examples include Koenig’s Duke
Religion Index,27 the Fetzer/NIA Multi-dimensional Measurement of
Religiousness/Spirituality,28 and the Spiritual Beliefs Inventory.29 While
these approaches are a significant advancement, there is still no consensus as
to an appropriate definition of religion or to the number of dimensions that
ought to be measured.
Hall, Meador, and Koenig point out that the previous types of
measurements attempt to discriminate between religiousness versus non-
religiousness. Another approach, however, includes studying the functional
value of religiousness, such as studying the effects of religiousness on
coping. Kenneth Pargament is widely regarded as the leading scholar in the
area of religious coping. He has refined his work over the years by
developing two influential scales: the RCOPE and brief RCOPE.30 These
scales attempt to measure the various ways in which subjects use religion to
cope with illness. Other instruments, such as the Spiritual Well-Being Scale,
measure religious well-being. Such instruments contain items such as, “I
have a personally meaningful relationship to God.”31 Koenig has criticized
these instruments on the grounds that they do not seem to measure anything
distinctly religious but rather existential well-being in general.
Hall, Meador, and Koenig also review various instruments and approaches
that are less widely used. Some involve “quest” scales, first developed by
Gregory Bateson,32 which focus on the extent to which an individual faces
existential questions such as doubt. Others have focused on beliefs and
values, such as beliefs about life after death. A significant amount of
empirical work has focused on religious affiliation, but a problem with this
approach is that no religious tradition is a monolith. Yet another approach
involves measuring religious maturity. The most influential researcher in this
area is James Fowler.33 Yet another approach is that of taking longitudinal
religious histories. Hall, Meador, and Koenig note that the best instrument
available in this regard is the SHS-4. The value of these approaches is that
they examine religiousness over time rather than at a single point in time.
And, finally, there are instruments that attempt to measure religious
experience, such as mystical or spiritual experiences.34 The Daily Spiritual
Experience Scale, for example, asks questions about feelings of inner peace
and harmony.35
Hall, Meador, and Koenig conclude their review by noting the importance
of context, emphasizing that it is important for empirical researchers to
realize that there is no such thing as “religiousness-in-general” and that it is a
misguided assumption to suggest that it does not matter what a person
believes so long as they do believe. This sort of assumption rests on
decontextualized religiousness, and such approaches lead to over-
generalization. Empirical researchers, like good clinicians, need to be able
navigate the tension between generalizablity and specificity.

Critique and Skepticism

The field of religion and health remains controversial. Despite the evidence
that Levin, Koenig, and others have compiled by means of literature reviews
(as well as by means of their own studies), some still maintain that a link
between religion and health does not exist. They think that the
methodological difficulties in measuring religion are too great to overcome.
Others reject the field in principle on the grounds that they do not want to
mix religion and science. Still others raise practical questions: Will patients
feel guilty if they become ill or do not recover, interpreting their condition as
due to a lack of faith? Some also maintain that religion is a matter that is too
delicate for physicians to study.36 And others, objecting on theological
grounds, point out that God or the transcendent cannot be reduced to human
constructs and numbers and that so-called “bad” outcomes may be a part of
God’s plan, that, in other words, the field of religion and health tends to
reduce religion, inappropriately, to its functionality.37
Perhaps the most outspoken critic of the field is Richard Sloan. He has
coauthored articles in medical journals – notably, The Lancet – and has also
published a monograph expressing his skepticism.38 Sloan’s basic point is
that the methodology that is attempting to establish a link between religion
and health is weak, and in making his case, he examines a number of specific
studies with weak methodology. Not surprisingly, Koenig has taken on
Sloan’s critiques in a number of papers, conceding that some studies have
been weak methodologically but that (1) Sloan is selectively and unfairly
presenting his evidence and (2) the field has been getting stronger
methodologically in recent decades.39
Each of the objections raised here has merit. But it seems to us that the
sheer number of studies suggesting an association between religion and
health cannot be ignored and that it does not seem fair to reject all of them
outright out of a negative bias toward religion; each study must be answered
on its own terms. Perhaps, in the end, it will be discovered that the
associations between religion and health – if these associations prove to stand
the test of time – are the product of several factors: (1) religious traditions
often discourage unhealthy behavior, such as drinking, smoking, and
promiscuity; (2) involvement in religious communities provides individuals
with social connections; and (3) religious practices and beliefs provide
individuals with coping mechanisms and an overarching belief structure that
helps them make sense of their lives, especially in times of health-related
crisis.

Concluding Advice for Clinical Practice

Following William James, we believe that religion should be judged by its
fruits. We suggest to students, therefore, that, no matter what their own
attitudes toward religion may be, they ought to pay attention to how religion
functions in the lives of their patients: Does religion seem to be helping or
hurting in a given situation? If a patient seems to be employing negative
religious coping methods, a chaplain should be consulted. If a patient seems
to be employing positive coping methods, these methods should be
strengthened by, for example, involving a local pastor, rabbi, or imam in
patient care.40

Summation
This chapter explored the field of religion and health. Beginning with a
discussion of the historical roots of the field, it examined the contributions of
key authors Jeffrey Levin and Harold Koenig; the major approaches and
instruments that have been used to study the relationship between religion
and health; and the critics of these studies. Then, with a focus on clinical
practice, it suggested that paying attention to the way that religion functions
in patients’ lives could help us to better care for patients. Overall, though, this
chapter attempted to emphasize that, despite the methodological difficulties
involved in measuring the effect of religion on health, the sheer number of
studies suggesting a link between them is too great to be ignored.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. To what extent can religion/spiritualty be measured?
2. What do you think about the associations that are consistently found
between religion and health?
3. If the associations between religion and health are valid, what does
this mean for clinical practice?
4. What are some possible ethical issues for health care professionals
should they choose to discuss religion and/or spirituality with their
patients?

Suggested Writing Exercise

Write, in as much concrete details as you can, about your worst experience or
impression of religion. Write for fifteen minutes. Share your reflections.
Now, imagine that you are a physician, and write for ten minutes about how
your experience or impression might affect the way you respond to patients
in the future should the topic of religion and/or spirituality arise in the clinical
setting.

Further Reading
Jeff Levin, God, Faith, and Health
Richard Sloan, Blind Faith: The Unholy Alliance of Religion and
 Medicine

Advanced Reading
Allan Brandt and Paul Rozin, eds., Morality and Health
Mark Cobb, Christiania Puchalski, and Bruce Rumbold, eds., Oxford
Textbook of Spirituality in Healthcare
William James, The Varieties of Religious Experience
Harold Koenig, The Handbook of Religion and Health
Jeff Levin and Michele F. Prince, eds., Judaism and Health: A
Handbook of Practical, Professional and Scholarly Resources
Kenneth Pargament, ed., APA Handbook of Psychology, Religion, and
Spirituality
Kenneth Pargament, The Psychology of Religion and Coping
Joel Shuman and Keith Meador, Heal Thyself: Spirituality, Medicine,
and the Distortion of Christianity
Thomas Plante and Allen Sherman, eds., Faith and Health

Journals
Journal of Religion, Disability and Health
Journal of Religion and Health

Online Resources
Duke Center for Spirituality, Theology, and Health
http://www.spiritualityandhealth.duke.edu/
Harold Koenig on Faith and Health
http://www.youtube.com/watch?v=xspdcEY9WpE
Jeffrey Levin’s website
http://religionandhealth.com
The John Templeton Foundation
http://www.templeton.org/
 21 Religion and Reality
If the doors of perception were cleansed, everything would appear to
man as it is, infinite.
– William Blake1

Abstract
This chapter explores the relationship between religious experience
and mental health. Beginning with a discussion of the general distrust
of religious experience among health care professionals, it examines
Sigmund Freud’s reductionistic interpretation of a physician’s
religious experience; Andrew Sullivan’s sympathetic interpretation of
his own religious experience in the wake of learning that he was
HIV+; Fred Frohock’s agnostic interpretation of Helen Thornton’s
near-death experience; and William Styron’s metaphorical
interpretation of his depression. Then, with a focus on recent
scholarship, it suggests some other ways of studying the intersections
of religious experience and mental health.

Introduction
Donald, a divinity school student, was having problems. He was having
difficulty concentrating in his classes and was having trouble sleeping. He
went to see Sara, a therapist, for help. Things were going well between
Donald and Sara until he found out that she was Jewish. Donald, a Lutheran
Christian, insisted that if the therapy were to continue Sara would have to
convert to Christianity. The director of the day treatment program called
Nancy Kehoe, a Roman Catholic nun and a clinical psychologist, to help deal
with the impasse between Donald and Sara. Donald explained:

I like Sara, but then I found out that she is Jewish. I can’t work with her
because she is not a Christian. I have read a lot of Freud. I know what
therapists think of people who have religious beliefs; they think that they
are sick or that they should grow up and let go of their childish beliefs.
My religion means everything to me.2

Kehoe notes that there was much truth in what Donald had said. Indeed,
when this episode occurred in 1981, “[t]he entrenched belief in the mental
health community then was that therapists could not and should not talk
about religion with ‘crazy people.’”3 Kehoe mediated the discussion between
Donald and Sara and helped him to articulate his fear that Sara would try to
take his religious faith away from him. When Sara promised that she would
not try to take away his faith, Donald was reassured enough to continue
therapy.
Religion often contains non-rational claims (such as the beliefs that God
became incarnate in Jesus of Nazareth or that Moses led his followers
through the Red Sea by means of splitting the water); religious beliefs and
religious experiences, therefore, are often viewed by health professionals
with skepticism because they observe the irrational (and often religious)
nature of psychotic delusions, such as when patients believe themselves to be
Jesus Christ.4 Religious claims and religious experiences, often for good
reasons, are viewed with skepticism in mental health settings.
This basic distrust of religious experience among health care professionals
can create a distance between patients and their caregivers. Patients like
Donald wonder if they are going to be taken seriously. Kehoe writes,
“[H]elping a person reframe the narrative of his or her life is the essence of
therapy,” but, in Donald’s case, because no one would listen to his concerns
about religion, “the whole story could never be told because no one wanted to
listen.”5 Caring for the patient as a whole person, we concur, means
acknowledging and witnessing the religious concerns of patients.6 And in
recent years clinicians are taking these concerns more seriously.7
Questions, Focus, and Approach of this Chapter
In what ways can we understand the relationships between religious
experience and mental health? Are religious experiences really “real”? What
is the clinical significance of these experiences? This chapter explores some
possible answers to these questions and offers some practical advice as well.
In so doing we will not focus on what seem to be obvious religious delusions
– as when persons believe themselves to be Jesus Christ – but rather on
experiences that blur the line between mental illness and insight.
The purpose of this chapter is not to provide an overview of the scholarship
on mental illness in medical humanities, although we do discuss some of this
literature in the conclusion of this chapter. The purpose is much more
modest; it is to emphasize a particular way of knowing in medical
humanities: idiographic inquiry. The approach in the previous chapter was
objective-empirical (or quantitative) with a focus on populations rather than a
focus on individuals; this chapter, in contrast, focuses on individuals and
could be called subjective-empirical (or qualitative).8 Another difference is
that the previous chapter focused on religion and health broadly, while this
chapter focuses on religion and mental health. It is worth pointing out that
this chapter is most closely related to Chapter 7 (“Narratives of Illness”).
This chapter will explore four experiences. The first involves the religious
conversion of an American physician; the second involves a mystical
experience of a patient; the third involves a near-death experience; and the
fourth involves a writer’s use of religious language to describe his experience
of depression. In exploring these narratives, we will observe different
functions and interpretations of religious experience.

A Physician’s Religious Experience: A

Reductionistic Interpretation
In an essay titled “A Religious Experience,” Sigmund Freud (1856–1939)
notes that a German-American journalist published an interview with him in
the fall of 1927. In the interview with Freud, he made some controversial
remarks about religion, including the fact that he gave no thought to the
matter of life after death.9 The interview inspired some readers to write Freud
letters, and he relates one such exchange with an American physician. In the
letter, the physician relays an experience he had when he was about to
graduate from medical school. He writes:

One afternoon while I was passing through the dissecting-room my

attention was attracted to a sweet-faced dear old woman who was being
carried to a dissecting-table. This sweet-faced woman made such an
impression on me that a thought flashed up in my mind: “There is no
God: if there were a God he would not have allowed this dear old
woman to be brought into the dissecting-room.”

When the physician went home that day, he had the thought that he should
stop going to church. He recalled that before this episode he had had some
doubts about some Christian doctrines. While he was contemplating not
going to church, he heard a voice that told him to consider the step that he
was about to take, and he communicated with this voice by saying: “If I knew
of a certainty that Christianity was [the] truth and the Bible was the Word of
God, then I would accept it.” The physician went on to explain that God did
in fact reveal this to be true to him, and he encouraged Freud to ask the same
of God so that Freud would become religious.
Freud notes that he sent a polite answer. He wrote stating that he was
pleased that this experience enabled the doctor to hold onto his faith, but that
God, unfortunately, had not done the same for him. Freud added that if God
were going to do so, he had better do it soon, because he was now an old man
and that if God did not do so it would not be his fault if he remained “an
infidel Jew” until his death. The physician wrote back stating that Freud’s
Judaism should not be a problem and that he and others were praying for God
to intervene in Freud’s life.
Freud thinks that the physician’s experience provides interesting food for
thought. There are many horrors of modern life, so why did this particular
experience cause the physician to doubt the existence of God? Freud offers a
psychoanalytic interpretation to answer this question. He suggests that this
woman reminds the physician of his mother. This is why he describes her in
such affectionate terms (“sweet-faced dear old woman”) and why he
addresses Freud as “brother physician.” This woman, possibly around the age
of his own mother and either naked or about to be undressed, aroused in the
doctor a longing for his own mother and also inspired in him an indignation
toward his father for having to share his mother. These emotional conflicts
were then displaced onto the religious sphere. In other words, the indignation
that he felt toward his father was displaced onto Father God in the form of
doubt. The man could have left religion altogether, but the conflict was
resolved in another way: a religious (hallucinatory) experience leading to
submission to the will of the (F)ather.
Was this religious experience “real”? For Freud the answer is clearly “no.”
Religious experience can often be explained – and explained away – in terms
of psychological conflicts. Freud attributed this experience to an Oedipal
conflict within the man that became expressed symbolically in religious
experience. Freud’s basic hope, as articulated in The Future of an Illusion,10
was that human beings would grow up and let go of religion to be able to live
without a protective parent in the sky. Clinical advice from this orientation
would suggest that health care professionals should not collude with patients
in their religious beliefs.

Presence without Shape, Voice without Words: A

Sympathetic Interpretation
This next narrative offers a different perspective. Andrew Sullivan is a British
author who self-identifies as a politically conservative Roman Catholic. He is
also gay as well as HIV+.
In Love Undetectable, Sullivan chronicles his relationship with his friend
Patrick and writes about being gay in America during the 1980s and 1990s.11
He also writes about coming to terms with the fact that he is HIV+ in light of
his religious faith. Sullivan prefaces his remarks by noting that the story he is
about to convey will sound absurd to some, delusional to others, and self-
aggrandizing to still others – yet, he suggests, this is the nature of writing
about faith.
One summer night Sullivan went out for dinner. He returned home, and
after about an hour, he fell ill with a fever. He assumed it was food
poisoning. Sullivan’s fever had risen to 104 degrees. It then fell, but then
later rose again, and fell again. This went on for a few days. He then assumed
it was the flu. One of these days while Sullivan was in bed he felt a presence:
“I know where it was on the wall, a space that had no shape, a presence that
had no form, something I can only call an intensification of light and space.”
For a moment he thought that the fever was causing him to hallucinate, but
when he checked his temperature it was normal, as was his pulse, skin, and
mouth. The presence then “commanded a tone” that was “at once admonitory
and intimate, firm and solid but of a kindness I could not even allow myself
feel.” He insists that it wasn’t a hallucination and that it was in some sense
real even while incomprehensible. A few weeks later Sullivan encountered
the presence again, this time at Mass. It was much less intense but the tone
was the same: “the sense of calm and urgency, the sense of warning and
intimacy, the sense of judgment, and unimaginable concern.” Two weeks
later, he learned that he was HIV+. When he told his friends about his
infection, Sullivan remembers the tone of one in particular who said,
“Andrew, Andrew.” He writes, “I recognized at once the voice, instantly and
shockingly, and I recognized the tone. Another person, a few days later,
responded the same way: “Andrew, Andrew.”
A short while after these experiences, Sullivan was reading the Bible and
came upon a passage in the Gospel of Luke, the story about Mary and Martha
(cf. Luke 10:38–42). They were hosting Jesus for dinner. While Mary and
Martha were preparing dinner for Jesus, Martha found herself doing all of the
work and therefore asked Jesus: “Lord, do you not care that my sister is
leaving me to do the serving all by myself?” Jesus responded: “Martha,
Martha.” He then went on and said that “you worry and fret about so many
things, and yet few are needed, indeed only one. It is Mary who has chosen
the better part; it is not to be taken away from her.” Sullivan notes that
Jesus’s tone is loving, admonitory, and intimate, the very tone that he had
been previously experiencing: Martha, Martha – Andrew, Andrew. The
implication is that Sullivan believes that the presence of Jesus had been
visiting him.
Sullivan offers a kind of religious experience that is not fantastic or
excessive. He is not claiming to have literally heard or to have seen God or
angels – what he is suggesting is that he felt the presence of God and that the
presence of God became apparent to him in some rather mundane but curious
ways: light on a wall, words and tones of friends, and in devotional reading.
This experience could be read as a deep desire or need to experience the
presence of God during a crisis. But if God does exist and if God does have a
personal relationship with us, are not these precisely the times that God
would visit us? Sullivan’s experience perhaps suggests so.
Religious experience offers people a way of making sense of suffering. If
religion is a crutch, as Freud might say, one could counter and suggest that
religion, while a crutch, is a good crutch and that some of us need it to walk.
Why, then, should religion be taken away even if it is a crutch? Clinical
advice informed by Sullivan’s experience would suggest that health care
professionals should recognize that religious beliefs and experiences may be
adaptive for patients.

A Near-Death Experience: An Agnostic

Interpretation
The ontological question – are religious experiences “real”? – is often raised
in hospital settings. People recovering from car wrecks, heart attacks, strokes,
and other medical emergencies often have crises that take them close to
death, and many such persons report having had religious experiences during
or after such close encounters. Indeed, Fred Frohock (1938–) observes that
some recent studies suggest that up to 45 percent of people who have “almost
died” have reported some features of a near-death experience.12
Frohock has collected a number of narratives of near-death experiences.
One involves the case of Helen Thornton. Thornton had a near-death
experience where she almost died after surgery. As she lay in the recovery
room, still under the effects of the drugs that were used to sedate her, she felt
as though she were moving through an aluminum-like tunnel. She saw her
son who had died when he was fifteen months old at the end of the tunnel
waiting for her and calling out to her, “Mom, Mom.” Then Thornton turned
and noticed that she was floating above the operating room. As she looked
down, she could see doctors and nurses working on her. She disliked the sight
of her body and wanted the team to stop working on her so that she could be
with her son. When she awoke, she did not remember returning to her body.
Her cousin, who was a nurse, greeted her: “What is your name?” Thornton
answered, “Don’t you know me? Did I die?” At this everyone laughed,
apparently because Thornton was confusing a standard clinical question with
an experience of the afterlife. Yet later Thornton learned that she did almost
die. While she is no longer afraid of death, Thornton doesn’t know what the
experience means. Frohock writes: “[S]he ... acknowledges that the
experience could have been an imaginary episode triggered by drugs. That is
the unsolvable conflict for her – either explanation fits the experience.” She
offers a definitive “maybe” to the ontological question.13
Like Sullivan, Thornton’s religious experience was positive, and the same
clinical advice would follow: Religious experiences ought to be judged by
their fruits; if they are helpful to patients, health care professionals should not
challenge them.
The study of anomalous experience is not new. Indeed, Frederic Myers
(1843–1901) recounts many such experiences in his Human Personality and
Its Survival after Bodily Death14 (Myers also founded the Society for
Psychical Research to provide a venue for exploring such experiences). It
may be surprising to the reader that a major mainstream study (i.e., grant-
funded research) of these experiences has been ongoing in recent years with
the results being published in peer-reviewed journals.15 For example, in 2008
Sam Parnia of the University of Southampton in the United Kingdom
launched a large study (which is called AWARE) in which Parnia and his
colleagues have placed postcards that are only viewable from the ceiling in
cardiac resuscitation rooms in twenty-five hospitals in the United Kingdom
and the United States,16 because many persons, such as Thornton, have
claimed to have floated to the ceiling during operations. One newspaper
article referred to this study as looking for “postcards from heaven.”17 It goes
without saying that, if Thornton’s experience is “real” in the sense that her
out-of-body experience was literal, a radical alteration our current
understanding of human consciousness would have to occur.

Chronicling the Irreducibility of Human

Experience: A Metaphorical Interpretation
The previous experiences presented in this chapter may or may not be
examples of acute mental illness (i.e., psychosis). This ambiguity is what
makes them interesting and difficult to interpret. This next experience deals
directly with mental illness but does not address the ontological question; it
takes an entirely different angle on the relationship between mental illness
and religious experience.
William Styron (1925–2006), as noted in a previous chapter, was a widely
acclaimed and award-winning American novelist and essayist. We noted that
Styron suffered from severe bouts of clinical depression, which he wrote
about in his memoir titled Darkness Visible.18 Our previous discussion of this
book focused on it as a “pathography.” This chapter draws attention to the
role of religion in the book.
While religion is not a major focus of the memoir – Darkness Visible is not
a spiritual autobiography – there are several significant places where religion
appears. The first such place is the epigram:

For the thing which

I greatly feared is come upon me,
and that which I was afraid of
Is come unto me.
I was not in safety, neither
had I rest, neither was I quiet;
yet trouble came.19

This epigram is Job 3:25–26. The Book of Job in the Hebrew Bible is a
form of skeptical wisdom that challenges the traditional wisdom of the
Hebrew Bible as articulated in the Book of Deuteronomy, which suggests
that if the faithful are obedient to God then God will bless the faithful but if
the faithful are disobedient then God will punish them (see Deuteronomy 28).
The Book of Job challenges this wisdom, as it is about a man who is upright
and faithful and yet still suffers, apparently unjustly.
Figure 21. Männliches Bildnis (Selbstbildnis) (Portrait of a Man (Self Portrait)),
1919, Erich Heckel, 1883–1970. Museum of Fine Arts, Houston. Museum purchase with
funds provided by the Marjorie G. and Evan C. Horning Print Fund © 2013 Artists
Rights Society (ARS), New York/VG Bild-Kunst, Bonn.

Troubled? What elements of this drawing suggest that this is a troubled man? What
might the small figure that appears to be speaking in his ear be saying to him? What
could the jagged shapes that surround his head represent?
This picture could represent the physician described in this chapter who heard a voice
urging him to reconsider giving up church after he saw the cadaver of a “sweet-faced
dear old woman” in the dissecting room. It might also represent the British author who
wrote that he felt a presence that he described as “an intensification of light and space.”
 What feelings does the picture evoke in you? Do you want to study it closely, or does it
make you uncomfortable?
The style of this work, called “expressionism,” arose in the early twentieth century, in
Germany, where artists began to respond to industrialism, urbanism, and the horrors of
the First World War and to create subjective, highly emotional images. Visual artists
continue to employ the expressionist style, and you will find many examples – more
than in literature or film – if you search for them on the Internet. Try to understand the
subjective, emotional qualities of the images you find.

Styron writes, “Since antiquity – in the tortured lament of Job, in the

choruses of Sophocles and Aeschylus – chroniclers of the human spirit have
been wrestling with a vocabulary that might give proper expression to
melancholia.” The value of religious language, for Styron, is not its
ontological validity but rather its descriptive prowess. He also notes that
Shakespeare (1564–1616), Dickinson (1830–1886), Van Gogh (1853–1890),
and Beethoven (1770–1827) have all given us ways to express the human
suffering of depression. In his view, however, no one has done better than
Dante (1265–1321):

In the middle of the journey of our life

I found myself in a dark wood,
For I had lost the right path.

Styron writes, “To most of those who have experienced it, the horror of
depression is so overwhelming as to be quite beyond expression, hence the
frustrated sense of inadequacy found in the work of even the greatest artists.”
What religion and the arts have to offer is metaphor (e.g., being depressed is
being lost in a dark wood). Clinical language such as the checklists found in
the Diagnostic and Statistical Manual of Mental Disorders simply does not
do justice to the richness of human experience.
Styron argues that the experience of depression is “irreducible.” This is
another connection to religion in that discussions of irreducibility are
common in theological circles.20 What does irreducible mean? Things such
as the color red are irreducible; red cannot be described or understood in
terms other than itself. “Redness” is something that stop signs and blood do
share and that lipstick and dresses can share. Yet the color red cannot be
reduced to something other than itself – it is what it is. Theologians and
religious studies scholars also often make similar claims about religion, that,
for example, religious experience cannot always be reduced to or explained
by, say, psychological phenomena. For instance, a reductionistic explanation
of a feeling of oneness during a mystical experience might be that it is really
a re-experiencing of experiences in the womb (as Freud might insist),
whereas a theological interpretation of the experience might insist that the
experience is “real” (as a mystic – or Sullivan – might insist).21 The mystic’s
claim is that reality is more complicated than philosophical and scientific
materialism imagines and that one must have had a mystical experience in
order to understand mysticism. For example, in his classic study of mystical
experience titled The Idea of the Holy Rodolf Otto (1869–1937) argues that
the religious experiences that he is writing about are sui generis (i.e., they are
not reducible to any other kind of experience). Near the beginning of the
book, Otto asks his readers to reflect on their own such experiences so that
they can understand his argument, and, if his readers have had no such
experiences, he requests them to read no further.22

Exercise: Listening
Listen to the song “Hurt” by Nine Inch Nails. Now listen to the song again, this time
covered by Johnny Cash. The lyrics are the same, but the song feels differently
depending on who is singing it. Why? What are the differences between the two
versions? How do you think age factors into the listener’s experience of the song? Do
you think this is a song about depression? Is this a modern day lament, as found in, say,
the Book of Lamentations in the Hebrew Bible? What might the relationship between
pain and art be?

What is striking about Styron is that he makes the similar claim that
depression cannot be reduced to something else. He suggests that depression
is:

nearly incomprehensible to those who have not experienced it in its

extreme mode, although the gloom, “the blues,” which people go
through occasionally and associate with the general hassle of everyday
 existence are of such prevalence that they do give many individuals a
hint of the illness in its catastrophic form.23

In other words, unless you have had the experience of severe depression, you
cannot really understand it. Red is red. Mystical experiences are mystical
experiences. And depression is depression.
Perhaps it would be most helpful for patients suffering from mental and
emotional disorders to be cared for by a health professional who has some
personal experience with mental and emotional disorders – Steven Miles
(1950–), a physician, and Kay Jamison (1946–), a psychologist, are both
health professionals who have risked writing about their own struggles with
mental illness and are gifts to the clinical community.24 In any case, clinical
advice following from Styron’s insights would suggest that health care
professionals who have not experienced mental illness should recognize the
limitations of their perspective when caring for persons with mental illness.

Conclusion
This chapter focused on the relationship between mental illness and religious
experience. We noted clinical lessons that can be derived from looking at this
relationship as well as epistemological questions that can be raised. As noted,
the previous chapter presented an overview of some research on religion and
health, and the approach there was objective-empirical with a focus on
populations and large sample sizes. This chapter presented brief case studies
or observations about individual persons; the approach was subjective-
empirical and textual. The major limitation of population studies is that they
do not, by necessity, provide much context. A subjective-empirical approach
provides a means for thicker description.25 The major limitation of
subjective-empirical approaches, however, is that one cannot make any
claims for generalizablity. There are, then, strengths and weaknesses to both
approaches, and we have presented both in these chapters to demonstrate two
ways of knowing in medical humanities.

Mental Illness and Medical Humanities: Sample

Literature and Further Reading
Recently, topics related to mental illness have been receiving more attention
in medical humanities. Indeed, some of this scholarship is practical in nature
by focusing on writing as a means of recovery from serious mental illness26
or by exploring how studying literature might enhance the education of
psychiatry students.27 Other scholarship is critical in nature, focusing on the
marketing of mental illness in consumer depression manuals28 or by applying
Michel Foucault’s (1926–1984) insights as articulated in Madness and
Civilization29 to destabilize the various power relationships related to
conceptions of mental illness.30 And still other scholarship uses the
humanities broadly to explore representations of mental illness, as in
constructions of psychopathy in literature and in film31 as well as to examine
the experience of mental illness for individuals and their loved ones and
families.32
Two key essays in this body of literature should be noted: Anne Hawkins’s
(1944–) “Pathography: Patient Narratives of Illness” and Anne Jones’s
(1944–) “Literature and Medicine: Narratives of Mental Illness.”33 These
essays are important because they are written for clinical audiences in major
journals. A recent noteworthy monograph in medical humanities is Jonathan
Metzl’s The Protest Psychosis: How Schizophrenia Became a Black Disease
– this book is of significance because Metzl is both a certified psychiatrist
and a trained humanities scholar.34
In closing, we note that some scholarship that fits all four components of
our definition of medical humanities as attending to context, experience,
formation, and conceptual analysis related to medicine – in this case, mental
illness. This body of literature will likely continue to grow.

Summation
This chapter explored the relationship between religious experience and
mental health. Beginning with a discussion of the general distrust of religious
experience among health care professionals, it examined Sigmund Freud’s
reductionistic interpretation of a physician’s religious experience; Andrew
Sullivan’s sympathetic interpretation of his own religious experience in the
wake of learning that he was HIV+; Fred Frohock’s agnostic interpretation of
Helen Thornton’s near-death experience; and William Styron’s metaphorical
interpretation of his depression. Then, with a focus on recent scholarship, it
suggested some other ways of studying the intersections of religious
experience and mental health. Overall, though, this chapter attempted to
emphasize that a subjective-empirical and textual approach to the study of
religion and mental health can provide us with thick, contextual descriptions
that quantitative (or objective-empirical) approaches lack.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. Do you have a family member who suffers from mental illness? If so,
what has this been like? Do you have any stories or special insights
to share?
2. To what extent should health care professionals talk to mental health
patients about religion and spirituality? What are the potentials and
pitfalls of such conversations?
3. To what extent can religious, spiritual, and anomalous experiences
inform our understanding of reality?
4. Discuss the limitations of both clinical and metaphorical descriptions
of mental illness.

Suggested Writing Exercise

Spend ten minutes thinking about the time that you felt the lowest during
your life. Why do you think you felt so low? What happened? How long did
these feelings last? Was God or religion or spirituality relevant to this
experience in any way? Looking back on the experience, write a narrative of
this account.

Suggested Viewing
A Beautiful Mind (2001)
One Flew Over the Cuckoo Nest (1975)
 Silver Linings Playbook (2012)

Suggested Listening
“Can You Hear Them?” by Ozzy Osbourne
“Lithium” by Nirvana
“Manic Depression” by Jimi Hendrix

Further Reading
Nick Flynn, Another Bullshit Night in Suck City
Kay Jamison, Touched with Fire
Susanna Kaysen, Girl, Interrupted
Elyn Saks, The Center Cannot Hold
Alexandra Styron, Reading My Father
William Styron, Darkness Visible

Advanced Reading
Carol Aneshensel, Jo Phelna, and Alex Bierman, eds., Handbook of the
Sociology of Mental Health
Donald Capps, Fragile Connections
Donald Capps, Understanding Psychosis
Michel Foucault, Madness and Civilization
David Goldberg and Peter Huxley, Mental Illness in the Community
Nancy Kehoe, Wrestling with Our Inner Angels
Harold Koenig, Handbook of Religion and Mental Health
Kenneth Pargament, The Psychology of Religion and Coping
Rosemary Radford Ruether, Many Forms of Madness
Thomas Szasz, The Myth of Mental Illness

Online Resources
Elyn Saks TED Talk
http://www.ted.com/talks/elyn_saks_seeing_mental_illness.html
Georgetown Bioethics Library: Mental Health
http://bioethics.georgetown.edu/resources/topics/mentalhealth/index.html
John Campbell on Schizophrenia
http://philosophybites.com/2013/01/john-campbell-on-
schizophrenia.html
National Alliance on Mental Illness Website
http://www.nami.org/Content/NavigationMenu/Inform_Yourself/About_Mental_Illne
This American Life, “Edge of Sanity”
http://www.thisamericanlife.org/radio-archives/episode/52/edge-of-
sanity
Thomas Insel TED Talk
http://www.ted.com/talks/thomas_insel_toward_a_new_understanding_of_mental_illn
 22 Religion and Bioethics
Why is it that the intellectual engine of bioethics seems to be driven by
legal or medical theorists rather than theologians?
– Laurie Zoloth1

Bioethics began in religion, but religion has faded from bioethics.

– Albert Jonsen2

Abstract
This chapter explores the brief history of religion and bioethics.
Beginning with a discussion of the religious roots of the field, it
examines the key contributions of early figures such as James
Gustafson, Paul Ramsey, Joseph Fletcher, Karen Lebacqz, William
May, H. Tristram Engelhardt Jr., and Daniel Callahan. Then, with a
focus on contemporary debates surrounding religion and bioethics, it
notes some recent developments in the field, including the
“conservative turn” and the emergence of non-Christian perspectives.

Introduction
The purpose of this chapter is to introduce the reader to the role that religious
thinkers have played, and, to a lesser extent, still do play, in bioethics. This
chapter is historical and thematic and has three parts. In part one, we provide
a brief overview of the history of religion and bioethics. In part two, we
explore some of the writings and themes of key thinkers in this history. And
in part three, we outline some current debates and discussion.

Part 1: An Overview of the History of Religion and

Bioethics
As noted previously in this book, the American Society for Bioethics and
Humanities (ASBH) is the flagship organization for bioethics in the United
States. This organization was formed in 1998 by merging the Society for
Bioethics Consultation (SBC), the Society for Health and Human Values
(SHHV), and the American Association of Bioethics (AAB). The SHHV was
formed in 1969 from the Committee on Medical Education and Theology, a
group created by Methodists and Presbyterians in 1965. So bioethics, at least
organizationally speaking, had strong roots in religion.3
Albert Jonsen (1931–), a Roman Catholic Jesuit priest, is one of the
“founders” of bioethics. He is well known for his book The Birth of
Bioethics4 and his coauthored book – with Stephen Toulmin (1922–2009) –
The Abuse of Casuistry.5 Jonsen has recently written an essay titled “A
History of Religion and Bioethics,”6 which is helpful for gaining a sense of
the history of religion and bioethics.
In the essay, Jonsen discusses a number of early theological thinkers in
bioethics. One is Richard McCormick (1922–2000), who taught at
Georgetown University and the University of Notre Dame. He was
considered “moderately liberal” for arguing, for example, that patients should
be allowed to die if their medical outlook were futile (he defined “futile” as
cases where there does not seem to be any chance of reasonable success and
where the burdens of treatment outweigh the benefits). He drew on Roman
Catholic natural law theory to ground his arguments.7
Another thinker whom Jonsen discusses is Joseph Fletcher (1905–1991).
Fletcher was ordained as an Episcopal priest and taught at various schools,
including Harvard Divinity School and the University of Virginia. Jonsen
describes Fletcher as “an unusual moral theologian” in that he “had the heart
not of [a] scholar but of a social activist.”8 He adds: “His goal was to convert
the church to its Jesus-given mission of serving the poor and oppressed.”9
Fletcher was unusual because (1) very few Protestant theologians addressed
medical ethics in those days; and (2) he consistently argued for a patient’s
right to choose, even for medical procedures such as euthanasia and artificial
insemination (these were radically liberal positions for a theological thinker
to take in the 1950s). Many of his views were articulated in Morals and
Medicine,10 published in 1954, but Fletcher’s most influential book was
Situation Ethics,11 published in 1966. Fletcher described himself as a
utilitarian.
Yet another theological thinker whom Jonsen discusses is Paul Ramsey
(1913–1988), arguably the most influential theologian of early – or of all –
bioethics. Ramsey, a Methodist, taught Christian ethics at Princeton
University and was well known for his book Basic Christian Ethics.12
Ramsey argued against Fletcher (and situation ethics) on virtually every
issue. He rejected utilitarianism and took a conservative view on all of the
major debates in bioethics of the day, such as genetic manipulation,
reproduction, and preserving life. He grounded his arguments in the idea of
covenant, which Jonsen describes in this way: “God’s steadfast love endows
human life ... with sanctity and [God] expects [a] faithful response of
obedience.”13 He also drew on the methods of casuistry and natural law
theory. Ramsey’s major contribution to bioethics is The Patient as Person,14
published in 1970, which Jonsen sees as “the first major contribution to
bioethics as a discipline.”15
McCormick, Fletcher, and Ramsey, then, are the three theological thinkers
whom Jonsen highlights. All three were Christian – a Roman Catholic and
two Protestants – and all three were founders of bioethics. They represented a
spectrum of views: McCormick as a moderate, Fletcher as a liberal, and
Ramsey as a conservative. Jonsen notes other major theological thinkers of
early bioethics as well, but he does not discuss them in any detail. Key points
include the fact that James Gustafson (1925–), who taught at Yale University,
the University of Chicago, and Emory University, trained the first generation
of bioethicists, including James Childress (1940–), LeRoy Walters (1940–),
and Stanley Hauerwaus (1940–); that Robert Veatch (1939–), who, as a
young man, wanted to become a medical missionary but shifted his interests
to secular bioethics, received the first doctoral degree from Harvard
University in medical ethics (in the religion and society track) in 1971; and
that Kenneth Vaux (1939–) hosted one of the earliest conferences on
bioethics at the Institute of Religion (now called the Institute for Spirituality
and Health) in Houston, Texas.16
Today bioethics is known as a secular enterprise.17 This raises the
question: If the most important voices in the early years of bioethics were
theological, how did bioethics become secular? Jonsen asserts that many
religious thinkers in bioethics voluntarily shed their theology to be able to
speak on rational, secular, and neutral grounds (he cites himself as a case in
point) and describes the shift in bioethics this way:

During the first two decades of bioethics, many scholars from outside
the theological disciplines entered the conversation. Philosophers such
as Hans Jonas, Samuel Gorovitz, Sissela Bok, and Dan Callahan,
physicians such as Edmund Pellegrino, Willard Gaylin, Eric Cassel,
lawyers such as Jay Katz, George Annas, and Alex Capron collaborated
to create a field of questions and arguments that merited the name
bioethics. The initial theologians moved easily into this collaboration
and, as they did, lost their distinctive mode of discourse. Bioethics was
not, and has never been, a unitary discipline. It is an amalgam of many
modes of discovery and discourse.18

Thus, while bioethics may have begun in religion, religion faded from
bioethics as it became established. The exception that proves the rule is that
Karen Lebacqz (1945–), whom Jonsen also identifies as a major early
contributor to bioethics, was one of the few theological thinkers in bioethics
who retained a strong theological voice in her writing.
Jonsen concludes his essay by pointing out that while the beginning of
bioethics was largely a Christian story there were a few influential non-
Christian voices. He notes that, while there were no significant Muslim,
Buddhist, or Hindu voices during the first decade of bioethics, there were
Jewish voices, such as Immanuel Jacobovits (1921–1999),19 J. David Bleich
(1936–),20 and, later, Baruch Brody (1943–).21 He also emphasizes the fact
that Brody adopted secular means of arguing.22
In “The Tension between Progressive Bioethics and Religion,” John Evans
offers a slightly different take on how bioethics became secular.23 He
suggests that major religious thinkers in bioethics, such as Gustafson,
voluntarily left the field once the “big questions” about the ends of bioethics
were solved. The ends of bioethics were determined and codified in a mode
of secular ethics that came to be called “principlism.”24 This mode of ethics,
for better or for worse, transcends all particular traditions – both religious
(e.g., Christian or Jewish) and secular (e.g., deontological or utilitarian) – and
attends to the following four principles as they apply to medical settings and
situations: autonomy, beneficence, non-maleficence, and justice (see Chapter
16). Bioethicists once asked big questions (e.g., what does it mean to be a
human being?), but, since these kinds of questions are not helpful in solving
clinical dilemmas in real time (e.g., under what circumstances should
physicians involuntarily hospitalize a person with psychoses for their own
good?), the big questions – and those who were interested in them – slowly
became marginalized. Theologians became less interested in bioethics
because, at least from the point of view of theologians, bioethics became
reduced to working out the answers to little questions according to the logic
of an authorized system (principlism). Evans quotes a somewhat arrogant
quip by Gustafson on what became of bioethics:

Should one cut the power source to a respirator for patient y whose
circumstances are a, b, and c? [This] is not utterly dissimilar to asking
whether $8.20 an hour or $8.55 an hour ought to be paid to carpenter’s
helpers in Kansas City.25

These questions were simply not interesting to theologians, and so, Evans
argues, they gradually left bioethics. But, as we will see, some observe that
religion and bioethics is undergoing a rebirth.26
There is merit in both Jonsen’s traditional narrative and Evans’s revised
history on the secularization of bioethics. Their interpretations are not
mutually exclusive. But we would emphasize that it seems likely that other
factors such as the slow development of a body of technical knowledge in
bioethics meant that it became harder for young theologians to enter into a
developed field without additional training. In the early days of bioethics,
when no such training existed, theologians moved easily into bioethics, but
now it is more difficult to do so.27

Part 2: Some Theological Founders of Bioethics on

Selected Topics
Having provided a brief overview of the origins of bioethics, paying special
attention to the role of theologians in founding the field, we now turn to the
thinkers (not all of whom are primarily theologians) themselves, offering
snapshots of their views. The thinkers selected here are James Gustafson,
Paul Ramsey, Joseph Fletcher, Karen Lebacqz, William May, H. Tristram
Engelhardt Jr., and Daniel Callahan.

James Gustafson on the Contributions of Theology

to Medical Ethics
James Gustafson (1925–) taught theological ethics at various institutions,
including Yale University, the University of Chicago, and Emory University.
In The Contributions of Theology to Medical Ethics, Gustafson begins by
defining theology as reflection upon the religious dimension of human
experience and ethics as reflection upon the moral dimension of human
experience.28 Thus, he defines theological ethics as reflection on moral
experience from a point of view that is informed by religious beliefs or
spiritual experiences: “Stories and symbols of God and his activities,” he
writes, “have been used to interpret the religious and moral significance of
events and circumstances in such a way that a particular course of human
moral action ‘follows’ from such interpretation.”29 Three theological
assertions inform his medical ethics:

1. God intends the well-being of creation;

2. God sustains the well-being of creation and creates new possibilities
for well-being; and
3. Human beings are finite and sinful agents whose actions can in part
determine the well-being of creation.30

Gustafson notes that he does not defend these theological assertions but that
all of his particular moral stances follow from them.
Perhaps an example will clarify Gustafson’s theological method.
Gustafson’s second theological assertion (God sustains the well-being of
creation and creates new possibilities for well-being) provides a theological
rationale for pursuing medical and scientific research that on the one hand is
risky and potentially harmful (such as the side effects of experimental cancer
research), yet on the other hand yields possibilities for greater well-being and
the relief of suffering (such as a cure for cancer). This research can be
theologically justified if God is viewed as working through physicians and
scientists to create new possibilities for well-being (such as a world without
cancer).
Gustafson concluded by noting that he has not sought to judge the
significance of the contributions of theology to medical ethics: “For most
persons involved in medical care and practice, the contribution of theology is
likely to be of minimal importance, for the moral principles and values
needed can be justified without reference to God, and the attitudes that
religious belief ground can be grounded in other ways.”31 He adds, “The
significance of theology’s contribution to medical ethics is likely to be
greatest to those who share in that religious consciousness, who have an
experience of the reality of God.”32 Gustafson’s deductive approach – the
articulation and application of theological assertions to questions in medical
ethics – is consistent, and it can lead to original insights for religious persons.
But theology, if it is to be of genuine significance for medical ethics, needs to
strive to offer insights that cannot be, or at least are not, offered by other
means.

Paul Ramsey on End-of-Life Issues

As noted, Paul Ramsey (1913–1988) taught Christian ethics at Princeton
University. In retirement, he resided in the Center for Theological Inquiry,
affiliated with Princeton Theological Seminary. In order to prepare for his
writing on medical ethics, he took a sabbatical at Georgetown University
where he observed patient care in the university’s hospitals. In “On (Only)
Caring for the Dying,” a selection of passages from The Patient as Person,
Ramsey discusses ethical issues related to caring at the end-of-life.33 He
notes three common distinctions made in these discussions:

1. The distinction between “ordinary” and “extraordinary” treatment;

2. The distinction between prolonging life and prolonging death; and
3. The distinction between direct killing and allowing to die.
Ramsey argues against medical overtreatment – that is, he argues against
“extraordinary” treatment and against the prolonging of death. However, he
also argues against direct killing. He contrasts his position with two other
common views in these debates. One is the position that life must be saved at
all costs, and the other is the position that life can be taken “for the sake of
some earthly good to come.”34 Ramsey draws on the thought of theologian
Karl Barth (1886–1968) to suggest, in contrast to the two views just noted,
that (1) death must not be seen as an absolute enemy, because, for the
Christian, death, just like life, is a gift from God, but that (2) life must not
been taken or death allowed arbitrarily. Ramsey also argues against direct
killing or euthanasia on the grounds that it is the moral equivalent of murder.
Death may be willed as an end, but not all means to this end are acceptable.
This point of view became widely accepted in secular bioethics.35

Figure 22. Separacion del Cuerpo y del Alma (Separation of the Body and the Soul),
no date, José Guadalupe Posada 1852–1913. The Museum of Fine Arts, Houston. Gift of
the Friends of Freda Radoff.
 This patient is appealing to us, the viewers, but why? What can we do to help him?
How can we interpret his dilemma? The human-like figure in the clouds may represent
an angel in Heaven. The skeleton, pointing to the cross and grave, is usually associated
with death. The Devil is often depicted with horns, like the creature at the foot of the
patient’s bed. How might the certainty of death and the promise of eternal salvation or
perpetual damnation affect the care he receives? How would the picture be different if
any of those figures stood between the patient in the bed and the viewer? Would the
patient’s fate be decided? How might the patient’s end-of-life care be affected by his
religious beliefs, or those of the medical staff or the hospital administration? How might
you use this drawing, by the Mexican artist José Guadalupe Posada, who died in 1913, to
explore the relationship between religion and bioethics? You can find more of Posada’s
satirical and political cartoons, many of which depict death’s skeleton in the midst of
daily life, on the Internet.

In “The Indignity of ‘Death with Dignity,’” an essay published in The

Hastings Center Studies (later renamed as The Hastings Center Report) in
1974, four years after the publication of The Patient as Person, Ramsey
qualified his earlier views.36 Because he considered himself a
“controversialist” in ethics, he noted that he was led to change his previous
views because he felt that too many people were agreeing with him! So he
made his views more conservative. Specifically, if he previously argued that
death ought not to be considered the enemy (death, like life, is a gift from
God), he was now arguing that death should be considered the enemy. He
still did not believe that life must be saved at all costs in that he inveighed
against philosophies of life and death that attempt to see death as “a part of
life” and philosophies of life and death that attempt to see death as “good” or
“beautiful.” In this piece, Ramsey grounds his argument in various biblical
passages (such as 1 John) and theological writers (such as St. Augustine) to
make the point that death is, in fact, the enemy and that there is nothing
dignifying about it.
In both selections from Ramsey’s writings offered here, he distinguishes
his views, in very critical ways, from the views of Fletcher. The fact that
Ramsey could so easily reverse his previous position demonstrates both a
strength (flexibility) and a weakness (arbitrariness) of his method.

Joseph Fletcher on Personhood

Joseph Fletcher (1905–1991), as noted, was ordained as an Episcopal priest
and taught at various schools, including Harvard Divinity School and the
University of Virginia. In his 1975 essay, titled “Four Indicators of
Humanhood,” Fletcher writes about the debate concerning what constitutes
humanhood and expands on an essay that he had previously published in The
Hastings Center Report in 1972 where he argued that neocortical function
(the neocortex is a part of the brain of mammals that has evolved recently and
is involved with higher-level functioning such as conscious thought) is “the
cardinal or hominizing trait upon which all the other human traits hinge.”37
He notes that the point of his 1972 essay was to keep the debate moving
forward and that since its publication three other traits have emerged as
potential indicators: Michael Tooley argues for self-consciousness; Richard
McCormick argues for relationality; and an unnamed pediatrician at the
Texas Medical Center in Houston, Texas, argues for capacity for happiness.
Fletcher stands by his original position, arguing that neocortical function is a
prerequisite for all other traits. And he points out problems with self-
consciousness and relationality as indicators – namely, that persons with
dementia or schizophrenia may lose their ability to relate to others and thus
could be viewed as losing their status as persons. According to Fletcher’s
definition, such human beings would still be persons because they have some
ability to think, even if their thinking is false or misguided.
There is nothing explicitly theological about this essay, although Fletcher
engages various religious thinkers and leading theologians of his day who
were writing in bioethics. His view of what constitutes humanhood is a
secular one that reduces to neocortical function. But a Christian anthropology
could be grounded in a different understanding of relationships, such as
God’s relationship to us even when we do not have the capacity – that is, the
neocortical function – to be in relationship with God, that God is in
relationship with all of creation, including inanimate objects, not simply the
beings in creation that happen to have neocortical function.

Karen Lebacqz on the Theological Implications of

Justice
Karen Lebacqz (1945–) has taught at various institutions, including the
Pacific School of Religion and McGill University, and she is an ordained
minister in the United Church of Christ. She is one of the most interesting
theological thinkers in bioethics because she was one of the “founders” of
bioethics who contributed to the drafting of “The Belmont Report”38 and
because, as noted, she is one of the few founders who never parted with
theology.
In an essay titled “Philosophy, Theology, and the Claims of Justice,”
Lebacqz argues that (1) a biblically based understanding of justice both
“implodes” and “explodes” articulations of justice in mainstream bioethics,
thereby expanding the scope of justice; (2) the categories of “oppression” and
“liberation” ought to be central in discussions of justice; and (3) the principle
of justice should be “first,” that, in other words, questions of justice should
have priority over other principles such as autonomy and beneficence
(autonomy often has priority in practice over beneficence, non-maleficence,
and justice in mainstream bioethics39).40 Her understanding of justice is
informed by liberation theology (a kind of political theology, first developed
within Roman Catholic circles, that interprets the teachings of Jesus in light
of unjust economic and social practices and attempts to provide justice for the
oppressed).
The primary difference between her understanding of justice and
articulations of justice in mainstream bioethics is that mainstream bioethics,
by and large, focuses on abstract questions of distribution and allocation,
whereas her understanding of justice focuses on systems of oppression and
structures of power – this is what she means by “exploding” articulations of
justice in bioethics. By “implosion,” she means recovering more traditional
understandings of justice by focusing on character formation, a notion that
has reemerged in medical education in recent decades under the rubric of
“professional identity formation” or “professional formation.”41
By placing justice first among the traditional four principles of bioethics
(i.e., autonomy, non-maleficence, beneficence, and justice), Lebacqz aims to
refocus some major discussions among policymakers. A practical example
might be the choice between, on the one hand, building a new neonatal
intensive care unit in an urban city in North America or, on the other hand,
dedicating resources to improve nutrition and sanitation in an underdeveloped
region in Africa. The basis for such a decision would not come from an
abstract reasoning about doing the greatest good for the greatest number but
from listening to the voices of the oppressed – which, in liberation theology,
is called “the epistemological privilege of the oppressed.”42 All knowledge
comes from some point of view, and Lebacqz is arguing that the point of
view of the oppressed ought to take priority in discussions of justice in
bioethics because power distorts one’s vision.
Lebacqz notes that her conclusions can be reached by other methods and
on secular grounds, but she points out that it was theologians who first made
this kind of a contribution to bioethics and that “the field ... might yet benefit
from attention to categories that are not uniquely theological but have
received more emphasis and attention in theological circles than in
mainstream philosophical bioethics.”43

William May on the Basis of Professional Ethics

William May (1928–) was affiliated with Georgetown University in
Washington, DC. In “Code and Covenant or Philanthropy and Contract?” he
writes about conceptions of the doctor-patient relationship and their
implications for professional ethics.44 May notes that codes are concerned
with style and that medical ethics, when rooted in codes, becomes a matter of
aesthetics where physicians are apprenticed into the “art” of medicine.
Various bodies, such as the American Medical Association, determine what
is expected of physicians in terms of technical competence and personal
behavior – that is, they determine what medicine should look like in terms of
aesthetics – so an ethics rooted in codes is not so much about internal states
as it is about external behavior. Codes establish what physicians must be able
to do and how they must behave.
A covenant is different from a code. Covenants involve a gift, an exchange
of promises, and a change in identity. In the Judeo-Christian tradition, the
covenant par excellence is God’s covenant with Israel: God liberated the
Jewish people from Egypt (the gift); He promised to be their God, so long as
they obeyed His Law (the promises); and they became God’s people (the
change in identity). May invokes covenant language here to contrast it with
the language not only of codes but also of contracts. Contracts are legalistic
and minimalist – they only specify what is required and what is owed if a
party violates the contract – while covenants are responsive in nature. As
May puts it, covenants “require a fidelity that exceeds any specification.”45
In what sense can the profession of medicine be understood in light of the
idea of covenant? Where, in other words, is the gift, the exchange of
promises, and the change of identity? May identifies several gifts that are
sometimes unrecognized by the profession. The first is the gift of being able
to study medicine at all. Not everyone has this opportunity, and these
opportunities to some extent arise out of the social conditions in which
persons are born. Another gift is that every physician has been trained by
some other group (e.g., medical students are taught by residents, residents by
junior attendings, junior attendings by senior attendings), and so all
physicians are indebted to the work of others. And yet another gift is clinical
access, the gift of having patients. Without patients, medical students and
residents could not learn. Certain rituals in medical education – such as
reciting the Hippocratic Oath at graduation ceremonies (which can be viewed
as a declaration of a promise relating to the covenant between physicians and
society) and the white coat ceremony at the beginning of the clinical years
and/or the beginning of medical school (which marks a change in
professional identity) – speak to the covenantal nature of medicine. May
wants to ground professional identity in indebtedness such that physicians
know and appreciate how much has been given to them. His hope is that they
will want to give back to the community in various ways, such as working for
just policies, doing clinical research, volunteering their time, being generous
with their money, and so forth. May wants to contrast the kind of giving that
he is advocating with regard to philanthropy because philanthropy assumes a
kind of superior position while May wants physicians to give out of a sense
of gratitude.
May’s ideas seem compelling. It seems to us that his ideas can be fruitfully
supplemented with research and inquiry as well as teaching and learning
regarding social and economic determinants of advantage and disadvantage.

H. Tristram Engelhardt Jr. on Pluralism

We now turn to a thinker who is not a theologian but a philosopher. H.
Tristram Engelhardt Jr. (1941–), who became a deeply committed Christian
later in his professional life, holds degrees in both philosophy and medicine
and has taught at both Rice University and Baylor College of Medicine. He is
one of the most well-known and controversial thinkers in mainstream secular
bioethics due to his lively presentation style and his procedural approach in
bioethics, articulated most thoroughly in The Foundations of Bioethics.46
This approach, and especially its implications for religion and bioethics, is
succinctly outlined in his “Bioethics in Pluralistic Societies.”47
Engelhardt has a vision of medicine as a secular profession that “focuses
more on procedures such as free and informed consent than on content.”48 He
writes:

Increasingly, physicians see their primary moral charge to be that of

explaining to patients the geography of possible outcomes of therapeutic
interventions and their consequences and allowing patients to choose
among those possibilities.49

The medical profession, as Engelhardt observes, is similar to that of the

mail carrier who “delivers with equal reliability the New England Journal of
Medicine, Playboy, and the Journal of Medicine and Philosophy.”50 Just as it
is not the mail carrier’s job to judge the morality of what his or her patrons
read but to deliver the mail, a physician should not judge the morality of a
given medical procedure such as abortion. It is his or her job to perform
medical procedures, not assess their moral meaning. Physicians do have the
right to a conscientious objection (if, say, they are morally opposed to
abortion), but this does not absolve them from their professional obligation
for referral.51
Engelhardt is skeptical that any particular vision of the moral life – such as
utilitarian, deontological, Christian, Marxist, feminist, and so forth – can be
justified on rational grounds, for all such visions beg the question, Why do
ethics from this point of view? Engelhardt argues that the most secular
bioethics can offer is guidance in matters of bureaucratic procedure (i.e., how
to maximize the freedom of free and consenting adults) and intellectual
clarification (i.e., how to realize the implications of a given perspective or
decision). He concludes his essay by suggesting a distinction between public
ethics and private morality. He notes that procedure must always be given
particular moral content from particular moral traditions:

The development of secular bioethics will force us to live within two

moral viewpoints: that of our particular communities and that of secular
public morality. There will be unavoidable moral schizophrenia.
Truthfulness of heart will force us always to embrace more than one
 moral stance. One cannot choose one or the other. One must embrace
both.52

Surely bioethics should be able to offer more than recommendations on

bureaucratic procedure and insights regarding intellectual clarification.
Engelhardt’s position is minimalist and inadequate for clinical practice.53

Daniel Callahan on the Need for Religion in

Bioethics
Daniel Callahan (1930–), who also is not a theologian but a philosopher,
cofounded (with Willard Gaylin) the Hastings Center in New York in 1969.
The Hastings Center has become the premier independent research institute
for bioethics in the world.
In “Religion and the Secularization of Bioethics,” published in 1990,
Callahan observes that “The most striking change over the past two decades
or so has been the secularization of bioethics,” as “[t]he field has moved from
one dominated by religious and medical traditions to one now increasingly
shaped by philosophical and legal concepts.”54 He notes three dangers that
bioethics faces with regard to the marginalization of religion, and he makes
these points as a self-confessed unbeliever (specifically, as an ex-Roman
Catholic). First, without religion, bioethics could be tempted to turn to the
law for moral guidance. The problem with this, as Callahan sees it, is that law
is better at pointing out forbidden actions rather than inspiring admirable
ones. Second, without religion, bioethics ignores centuries of moral
reflections from a wide variety of traditions. He notes that one does not need
to be a Jew to appreciate the wisdom of the rabbis or a Roman Catholic to
appreciate the Pope’s point of view. Third, bioethics, in its search for a
common and neutral language, neglects the fact that all moral thought is the
product of particular communities. By excluding religion in the name of
pluralism, bioethics becomes a restrictive rather than an expansive voice.
The case that Callahan makes here marks a transition for the field or area
of religion and bioethics and sets the stage for a rebirth of religion in
bioethics. As Courtney Campbell observes, theologians and persons of faith
have every reason to be interested in bioethics:
 [F]aith traditions and religious communities have direct responsibilities
to their members to provide practical guidance for situations in clinical
medical practice. Thus, theologians addressing age-old questions of
abortion, contraception, euthanasia, or suicide, as well as more recent
issues of reproductive technology, genetic screening, or organ
procurement, must be responsive and answerable to the pastoral needs of
a faith-informed audience. By contrast, there is no such similar
constituency addressed by philosophical writers in bioethics.55

Pastoral theologians in particular should play a prominent role in the rebirth

of religion in bioethics, given the centrality of lived experience in these age-
old questions and contemporary quandaries.56

Part 3: Contemporary Discussions

We now want to move to contemporary discussions of religion and bioethics.
The most substantial contribution in recent years is an edited volume by
David Guinn, titled Handbook of Bioethics and Religion.57 In the
introduction to the volume, Guinn lays out some of the basic issues and
current debates. We highlight major issues that he identifies and note some
other recent developments.

What Role Should Religion Play in Public Policy?

The most fundamental question for religion and bioethics, as Guinn sees it, is
this one: “In a liberal, religiously pluralistic country like the United States,
what role should religion play in the formation and development of public
policies and practices regarding health care?”58 Based on the First
Amendment to the Constitution of the United States, some think that religion
should not play any role in public policy. But Guinn notes that it is not clear
what the First Amendment means, as it has both an establishment clause and
a free exercise cause: “Congress shall make no law respecting an
establishment of religion [the establishment clause] or prohibiting the free
exercise thereof [the free exercise clause].”59 Some, such as Thomas
Jefferson, have argued for the neutrality standard that establishes “a wall of
separation between Church and State.”60 Yet in practice it is unclear and
ambiguous what this wall would (or should) look like, because a person of
faith, just like any other person, has every right to express his or her views,
and this includes perspectives grounded in faith. Should state governors, as
persons of faith, be allowed to make, say, prolife arguments that are based on
doctrinal statements? Is it realistic to expect them to separate their personal
beliefs from their public leadership?

Common Objections to Religious Arguments in

Public Discourse
Guinn notes some common reasons offered to exclude religious points of
view from public discourse:

1. Religion is not shared by everyone;

2. Religion separates people and groups, sometimes creating factions;
3. Religion has been violent in the past and continues to inspire violence
today;
4. Religious arguments subvert rational discussion because people often
get too emotional and heated.61

Guinn offers some rebuttals to each of these arguments and notes that more
substantial engagements with these criticisms are included in his edited
volume. But his basic response to these criticisms can be put this way: These
critiques fail to see that religion is not a monolith and that many of these
critiques apply to secular ways of thinking as well. Some of the most violent,
authoritarian, divisive, and exclusive movements in history have been secular
(e.g., Stalinism), and some of the greatest modern tragedies (e.g., the
Vietnam War) have been carried out by democracies and inspired by ideals
such as freedom. Secular ideologies, like religious ideologies, have blood on
their hands.62 Without denying the problems of religion, Guinn suggests that
one must also consider what religion has to offer.

Are Secular Arguments Neutral?

Guinn suggests that secular language is not neutral. On this point, he quotes
Michael McConnell with approval:
 In the marketplace of ideas, secular viewpoints and ideologies are in
competition with religious viewpoints and ideologies. It is no more
neutral to favor the secular over the religious than it is to favor the
religious over the secular.63

Guinn argues that “all worldviews rest upon certain unprovable

assumptions.”64 He continues: “For religious worldviews these foundational
assumptions may be identified with beliefs about the transcendent or the
ultimate reality. Philosophically or empirically based worldviews rest upon
certain assumptions about the nature of the world.”65 Guinn points out that
utilitarians assume, but cannot prove, that happiness or utility is good and
that empiricists assume, but cannot prove, that the universe is a closed
system. Why should the unprovable assumptions of utilitarianism or
empiricism – worldviews that influence political philosophies, both
conservative and liberal – be allowed to influence public policy while the
unprovable assumptions of Christianity and Buddhism be not allowed to do
so?66

Should Religious Arguments be Translated into

Secular Reasoning?
Should the conclusions of religious perspectives be translated into secular
language? Guinn notes that requiring religious believers to translate their
arguments so that they are convincing on secular grounds is offensive to
religious believers: “Those people of faith feel discriminated against in the
same way that many feminists feel discriminated against by the grammatical
rule that masculine pronouns are neutral and represent any person.”67
“Hiding the religious justification for a policy,” Guinn notes, “has the same
effect,” as “[i]t conveys the message that religious justification is not
legitimate.”68

The Conservative Turn

Another important development in recent discussions of religion and
bioethics is what might be called the “conservative turn” (e.g., traditional
Roman Catholic voices, Eastern Orthodox voices, evangelical Christian
voices, and fundamentalist Christian voices – perspectives that are typically
prolife and against the withdrawal of treatment). We noted John Evans’s
“The Tension between Progressive Bioethics and Religion” above. Evans
points out that all of the religious thinkers in early bioethics would be
considered liberal or progressive today. Even Ramsey, who was once
considered a conservative voice, would be considered liberal by today’s
standards. So Evans’s point is that the secularization of bioethics meant, in
effect, the exodus of liberal and progressive religious voices from bioethics.
What is distinctive about religion and bioethics today is that the rebirth of
religion in bioethics is largely an introduction of conservative voices. Evans
points out that the way that religious conservatives have made their voices
heard and their point of view recognized in bioethics and in public policy has
involved media campaigns over cases such as the Terri Schiavo case.69 With
the election of George W. Bush in 2000, conservative voices gained a
substantial amount of political weight with the formation of the President’s
Council on Bioethics, chaired by Leon Kass from 2001–2005 and Edmund
Pellegrino from 2005–2009.

Case Study: Terri Schiavo

Teresa Marie “Terri” Schiavo (1963–2005) suffered a cardiac arrest in 1990 from which
she sustained massive brain injury from a lack of oxygen. She spent a couple of months
in a coma and was subsequently given the diagnosis of persistent vegetative state (PVS).
Comas are states in which patients lack both awareness and wakefulness. PVS patients,
in contrast, sometimes demonstrate wakefulness but apparently not awareness (though
some studies in recent years seem to have suggested that it is possible to communicate
with PVS patients who are minimally conscious). In the Schiavo case, her husband
wished to withdraw life support measures but her parents refused. This disagreement led
to legal battles and the case drew national attention, even attention from the White
House. The courts eventually sided with Schiavo’s husband, granting his wish to allow
her to die fifteen years after her cardiac arrest.
How long should PVS patients receive life support? Is withdrawing life support
murder, or is it allowing death to occur – or is it something else? How should
disagreements among family members be handled? To what extent, if any, should
religious beliefs play a role in these debates? If it is possible to communicate with PVS
patients, does this affect your views? If so, how?
 Also of interest is a recent shift in Engelhardt’s thinking. In 1995, he
launched a new journal, Christian Bioethics, which is committed to content-
full understandings of bioethics from the perspective of traditional
Christianity:

[This journal] will examine the traditional content-full commitments of

the Christian faiths with regard to the meaning of life, sexuality,
suffering, illness, and death within the context of medicine and health
care. The Journal seeks to break new ground by taking the content of
Christianity seriously while critically assessing the extent to which the
different Christian faiths and their different health care policies
authentically realize that content with respect to bioethical issues.70

The emergence of journals such as these seems to indicate a resurgence of

religion and bioethics.

Non-Christian Perspectives in Bioethics

The vast majority of religious thinking with regard to bioethics remains
Christian and Jewish. However, scholarship outside of these traditions has
begun to be developed in recent decades. Some examples are listed in
exercises at the end of the chapter.

Conclusion
Did bioethics begin in religion, and then fade away? Jonsen suggests that he
does not think the bioethics began “in religion” but that “[i]ndividuals from
quite different denominational backgrounds with very different training
addressed the issues of the day.”71 And to make their arguments
understandable, theological thinkers in bioethics, by and large, did not appeal
to doctrine or to scripture but to reasons and arguments that everyone could
understand. This view of the history of religion and bioethics has been
qualified further in recent decades. Also, religious voices in bioethics have
reemerged in bioethics, with the conservative turn in religion and bioethics
being one of the most substantial developments in this regard as well as the
emergence and development of non-Christian perspectives.
Summation
This chapter explored the brief history of religion and bioethics. Beginning
with a discussion of the religious roots of the field, it examined the key
contributions of early figures such as James Gustafson, Paul Ramsey, Joseph
Fletcher, Karen Lebacqz, William May, H. Tristram Engelhardt Jr., and
Daniel Callahan. Then, with a focus on contemporary debates surrounding
religion and bioethics, it noted some recent developments in the field,
including the “conservative turn” and the emergence of non-Christian
perspectives. Overall, though, this chapter attempted to emphasize the strong,
yet often unacknowledged, historical relationship between religion and
bioethics.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. To what extent does faith or religion influence your own private
morality?
2. If you are religious, what does your religion teach about abortion?
3. If you are religious, what does your religion teach about caring for the
poor?
4. What role, if any, should religion play in public policy and in clinical
practice? Should the practice of medicine be a secular enterprise,
functioning like the mail carrier, as Engelhardt suggested in
“Bioethics and Pluralist Societies”?

Suggested Writing Exercise

List three “gifts” that enabled you to go to college and/or to pursue medicine
(e.g., being born into a family with relative affluence, being born into a
family that values education, being born with a certain level of intellectual
ability, and having good mentors). Write a letter of gratitude to someone
responsible for giving you this gift. The letter can be to a mentor, a family
member, God, or anyone else. You can also write a personal letter to
something impersonal, like chance or fate.

Suggested Viewing
Hold Your Breath (2007)
The Terri Schiavo Story (2009)

Advanced Reading
Major Works in Judaism
Elliot Dorff, Matters of Life and Death: A Jewish Approach to Modern
Medical Ethics
Benjamin Freedman, Duty and Healing: Foundations of a Jewish
Bioethic
Immanuel Jakobovits, Jewish Medical Ethics
Fred Rosner, Modern Medicine and Jewish Ethics
Major Works in Christianity
Joseph Fletcher, Situation Ethics: The New Morality
James Gustafson, The Contributions of Theology to Medical Ethics
William Werpehowski and Stephen Crocco, eds., The Essential Paul
Ramsey: A Collection
Major Works in Islam
Dariusch Atighetchi, Islamic Bioethics: Problems and Perspectives
Jonathan Brockopp and Thomas Eich, eds., Muslim Medical Ethics:
From Theory to Practice
Abdulaziz Abdulhussein Sachedina, Islamic Biomedical Ethics:
Principles and Application
Major Works in Hinduism and Buddhism
S. Cromwell Crawford, Hindu Bioethics for the Twenty-First Century
Kazumasa Hoshino, ed., Japanese and Western Bioethics: Studies in
Moral Diversity
Damien Keown, Buddhism and Bioethics

Other Advanced Reading

The American Journal of Bioethics, December 2012: “In Defense of
Irreligious Bioethics”
Curlin, Farr, Lawrence, Ryan, Chin, Marshall, and John Lantos. “Religion,
Conscience, and Controversial Clinical Practices.” The New England Journal
of Medicine. 356 (2007): 593–600.
Dena Davis and Laurie Zoloth, eds., Notes from a Narrow Ridge: Religion
and Bioethics
David Guinn, ed., Handbook of Bioethics and Religion
Jack Hanford, Bioethics from a Faith Perspective: Ethics in Healthcare for
the Twenty First Century
Stephen Lammers and Allen Verhey, eds., On Moral Medicine:
Theological Perspectives in Medical Ethics
Gilbert Meilaender, Body, Soul, and Bioethics
Post, Stephen. “Interacting with Other Worlds: A Review of Books from
the Park Ridge Center.” Medical Humanities Review. 4 (1990): 45–54.
David Smith, ed., Caring Well: Religion, Narrative, and Health Care
Ethics

Journals
Christian Bioethics
Linacre Quarterly
The National Catholic Bioethics Quarterly
Second Opinion: Health, Faith, and Ethics (1986–1995)

Online Resources
American Academy of Religion – Bioethics and Religion Group
http://www.aarweb.org/meetings/annual_meeting/program_units/PUinformation.asp?
PUNum=AARPU052
Bioethics.Net – Religion and Bioethics
http://bioethics.net/resources/index.php?&cat=5&t=sub_pages
Leon Kass Lecture on Immorality
http://www.youtube.com/watch?v=3Wq6DI4XMwc
National Catholic Bioethics Center
http://www.ncbcenter.org/NetCommunity/
The Park Ridge Center for the Study of Health, Faith, and Ethics
http://www.parkridgecenter.org/
Peter Sinter TED Talk on Altruism
http://www.ted.com/talks/peter_singer_the_why_and_how_of_effective_altruism.htm
PEW Forum
http://pewforum.org/Topics/Issues/Science-and-Bioethics/
The President’s Council on Bioethics (chaired by Leon Kass and
Edmund Pellegrino)
http://bioethics.georgetown.edu/pcbe/index.html
Presidential Commission for the Study of Bioethical Issues (chaired by
Amy Gutmann)
http://www.bioethics.gov/
 23 Suffering and Hope
Pandora, the first mortal woman, received from Zeus a box that she was
forbidden to open. The box contained all human blessings and all
human curses. Temptation overcame restraint, and Pandora opened it.
In a moment, all the curses were released into the world, and all the
blessings escaped and were lost – except one: hope. Without hope,
mortals could not endure.1
– Greek Mythology

Providence does not mean a divine planning by which everything is

predetermined .... Rather, Providence means that there is a creative and
saving possibility implied in every situation.2
– Paul Tillich

Abstract
This chapter explores suffering and hope in the context of medicine.
Beginning with a discussion of Eric Cassell’s claim that physicians
should attend to pain and suffering, it examines possible religious
answers to patients’ existential struggles to find meaning in their
illnesses; the practical theodicies that health care professionals often
construct or hold onto to help them deal with suffering; and the nature
and role of hope in patients’ lives and clinical practice. Then, with a
focus on the inevitability of suffering, it suggests that we should do
our best to create the conditions for hope.
Introduction
In this Pulitzer Prize-winning photograph, Kevin Carter images a young girl
in Africa collapsing from starvation and exhaustion. Being leered at by a
hungry vulture, this girl without food could become food.

Figure 23. Famine in Sudan, 1993, Kevin Carter 1960–1994 © Kevin

Carter/Corbis.

Arthur Kleinman (1941–) and Joan Kleinman (1939–2011) note that this
photograph has been used to mobilize social action and has functioned as a
force for good. They also note that the photograph originally appeared with
an accompanying news story about political violence in southern Sudan.
Once the image is put in the context of civil war, it becomes all the more
powerful, as the “real” forces of evil are not in the world of nature – that is,
the vulture – but in the world of politics, because in southern Sudan famine
has been used as “a political strategy.”3
Kleinman and Kleinman also raise some standard questions in the ethics of
photography: Why did Carter allow the vulture to get this close? Did he help
the little girl after taking this photograph? Does not the girl’s physical
condition demand immediate attention? How long did he spend trying to get
this shot?
The moral ambiguity of photography was not lost on Carter, who
committed suicide at the young age of thirty-three. His suicide note stated
that he was being haunted by the images of suffering he had witnessed over
the years, perhaps suggesting some feelings of guilt and shame for making a
living based on the suffering of others. But Kleinman and Kleinman note
that, while it is easy to moralize about Carter and other such photographers,
to do so would fail to see their courage. Indeed, many journalists and
photographers lose their lives each year as they go to do their work in war
zones. Moreover, such journalism often inspires worldwide collective action
to alleviate suffering, as this photograph did.
Nevertheless, Kleinman and Kleinman offer their own critiques of this
photograph. One is that the photograph could be taken to imply that Africans
cannot take care of themselves (and therefore require foreign intervention);
another is that it could imply that Africans cannot represent themselves (and
therefore require foreign journalists to represent them). These implications
seem to encourage the racist assumption that Western societies are superior to
African societies. Another critique is that witnessing suffering in the media
has become a form of entertainment in the West (suffering, like sex, “sells”).
Still another problem with exploring suffering on the other side of the world,
and witnessing it so often, is that this could have the effect of desensitizing
people to suffering and encouraging apathy. Yet while exploring suffering
has such moral ambiguities, Kleinman and Kleinman do not suggest that we
ought not to explore suffering – ignoring suffering would seem to be worse –
but they do suggest that, when one does, one should attend to the various and
multivalent political and ethical complexities and ambiguities of such
exploration.

The Layout of This Chapter

The purpose of this chapter is to explore suffering in the context of medicine.
Because the vast majority of the people in the world are religious and/or
spiritual,4 and because persons often turn to religious traditions in order to
cope with suffering,5 we suggest that clinicians and those interested in health
care would do well to know something about religious responses to suffering,
as well as their limits.
This chapter has three parts. Part one deals with the nature of suffering in
the context of the goals of medicine. Part two deals religious responses to
suffering by exploring (1) traditional theological responses from Christianity,
Hinduism, and Buddhism, and (2) religious critiques, especially from
chaplaincy, of these responses. Part three deals with the nature of hope as
well as hope in clinical practice.

Part 1: Suffering
If there are canonical texts in medical humanities, Eric Cassell’s (1928–) The
Nature of Suffering and the Goals of Medicine would certainly qualify as
one.6 Cassell’s basic argument is that physicians should attend to persons as
well as bodies and to suffering as well as pain. Pain is easy to understand; it
is what we feel when, for example, we stub our toe. But what is “suffering”?
“Suffering,” Cassell writes, “is an affliction of the person, not the body.”7
What does he mean by “person”? He defines a person as having: a past; a
family; a culture; roles; relationships with others; a relationship with oneself;
political interests; activities that they do; an inner life; regular behaviors; a
body; secrets; a perceived future; and a transcendent dimension.8 He offers
these characteristics of personhood to demonstrate the complexity of
suffering, which he defines as a perception of the “impending destruction” of
one’s personhood. He notes that this “impending destruction” can happen to
any aspect of his typology of personhood (e.g., a person can suffer in terms of
loss of roles, relationships, activities, and so forth), and he provides this case
to illustrate what he means by suffering:

[A] forty-seven-year-old single woman, in whom the sudden appearance

of widespread metastatic breast cancer caused her to be hospitalized and
near death, suffers. But it is not primarily the weakness, profound
anorexia, and generalized swelling, as distressing as these things are,
that are the source of her suffering, but the loss of control and inability
to prevent the evaporation of her career, whose brilliant promise had
finally been realized a few months earlier.9
Relieving suffering in this case means attending to the personal concerns of
this woman. It is not enough to treat the body, Cassell argues, because one
must also care for the person. Cassell suggests that one’s caring for the
person means attending to the specific personal and individual nature of
suffering, here meaning attending to the patient’s concerns about her loss of
control and her loss of roles – the evaporation of her career.
How do we know if someone is suffering? Cassell offers a straightforward
answer: We ask them. When he asks patients if they are suffering, he notes
that patients often initially do not know what they are being asked and so he
rephrases the question in various ways:

“I know you have pain, but are there things that are even worse than just
the pain?” “Are you frightened by all this?” “What exactly are you
frightened of?” “What do you worry (are afraid) is going to happen to
you?” “What is the worst thing about all this?”10

Simply witnessing suffering in this way, Cassell suggests, will go a long way
in meliorating it because in lending an empathic ear we lend strength to
patients, helping them to draw on their own natural resiliency. It also is worth
pointing out that Cassell suggests that sometimes suffering cannot be
meliorated.11

Possible Critiques of Cassell

There are at least two straightforward critiques of Cassell from a practical and
clinical standpoint:

1. Do physicians have time to attend to “suffering”?

2. Is it the role of physicians to address “suffering”? Would these issues
be best left to those who have specifically studied human personality
extensively, like psychologists?

There are possible substantive and philosophical critiques of Cassell as well.

One involves his list of dimensions that constitute personhood. How did he
come up with this list? What assumptions about personhood are being made
here that advance certain power relationships? Is an infant, for example,
somehow less of a person because it has less of a past than, say, a working
adult? Are persons with mental disabilities somehow less of a person if they
are not able to reflect on their inner life? We are not suggesting that Cassell
makes either of these assumptions; we are simply pointing out potential
problems with his model. Also, why doesn’t his list include gender? Another
critique is that his list is not integrated in any way. He notes that suffering
involves the “impending destruction” of the person, but what is it that holds
the person together?
Despite these critiques, we believe that Cassell’s notion of suffering is a
useful one. Whether one finds the details of his model convincing or not, his
work simply cannot be ignored because it is so widely read and cited. For the
remaining part of the chapter, we want to emphasize one dimension of his
model of personhood – the transcendent dimension – because this section of
the textbook focuses on religions.

Part 2: Why?
In “Discussing Religious and Spiritual Issues at the End of Life,” Bernard Lo
and his colleagues write about two meanings of the question of “why” in
clinical practice.12 They point out that patients could be asking “why” in a
biomedical sense: What caused this cancer – bad genes, bad habits? But
patients could also be asking “why” an existential sense: Why would God
allow me to suffer like this? The authors suggest that when patients ask
existential questions health professionals should not go beyond their
professional expertise (and should therefore refer such patients to chaplains).
While we agree that physicians should not step beyond their roles, we also
endorse Cassell’s position that it is the role of physicians to attend to
suffering, and so we hope that physicians would make some effort in this
regard. Perhaps a middle ground would be for physicians to take spiritual
histories and then refer patients to chaplains if significant existential
questions arise (it seems that such a strategy would work better in inpatient
rather than outpatient settings). How to take a spiritual history will be
discussed later in the Exercises for Critical Thinking and Character
Formation.
What follows are some responses that patients often give when trying to
explain the “why” of their suffering. We explore common responses given in
monotheistic religions such as Christianity as well as common responses
given in non-monotheistic traditions such as Hinduism and Buddhism. This
presentation is necessarily selective.

Monotheistic Responses
In monotheistic religions such as Christianity, the existence of suffering
causes a problem. If God is good and powerful, why does suffering exist?13
Because suffering exists, it would seem that God is not good and/or not
powerful. Since this conclusion is unacceptable to most theologians, they try
to come up with alternative reasons for why suffering exists. The term
“theodicy” refers to this type of theological reflection (i.e., theological
inquiry attempting to address the problem of evil and/or suffering).

Case Study: The Book of Job

In the Hebrew Bible, the Book of Job tells the story of a man who suffered for no
apparent reason. In the Book of Deuteronomy, also in the Hebrew Bible, it states that
God will reward those who are good and punish those who are bad. But Job was a man
without sin and yet suffered. The Book of Job, then, attempts to provide a kind of
answer to suffering. As Job makes his case to God – that is, as he pleads with God to tell
him why he is suffering because he knows that he is an upright and blameless man –
God eventually responds to Job. The passage below is an excerpt of God’s response.
“Then the LORD answered Job out of the whirlwind:
Who is this that darkens counsel by words without knowledge? Gird up your loins
like a man, I will question you, and you shall declare to me. Where were you when I laid
the foundation of the earth? Tell me, if you have understanding. Who determined its
measurements – surely you know! Or who stretched the line upon it? On what were its
bases sunk, or who laid its cornerstone when the morning stars sang together and all the
heavenly beings shouted for joy?
Or who shut in the sea with doors when it burst out from the womb? – when I made
the clouds its garment, and thick darkness its swaddling band, and prescribed bounds for
it, and set bars and doors, and said, Thus far shall you come, and no farther, and here
shall your proud waves be stopped?
Have you commanded the morning since your days began, and caused the dawn to
know its place, so that it might take hold of the skirts of the earth, and the wicked be
shaken out of it? It is changed like clay under the seal, and it is dyed like a garment.
Light is withheld from the wicked, and their uplifted arm is broken. Have you entered
into the springs of the sea, or walked in the recesses of the deep? Have the gates of death
been revealed to you, or have you seen the gates of deep darkness? Have you
comprehended the expanse of the earth? Declare, if you know all this.” – The Book of
 Job, 38:1–18
What do you make of God’s response here? What kind of answer is this? Do you
think this answer is “true”? Is it helpful? Can a message be both true and unhelpful?

In When Faith Is Tested, Jeffry Zurheide notes some classic so-called

“answers” to the problem of suffering.14 The deterministic answer refers to
such statements as “It is a part of God’s plan.” What may appear to human
beings as unfair is in reality a part of a larger plan known only by God, and
what does not make sense now will make sense when we when we see God
face-to-face. The didactic answer refers to statements such as “God is
teaching me something.” This answer holds that God uses pain and suffering
to teach us. Pain and suffering have a way of focusing our attention, causing
us to be introspective, helping us to achieve insights that we would not
otherwise achieve. The athletic answer refers to statements such as “God
only gives you things you can handle.” This interpretation of suffering
emphasizes the fact that suffering can not only teach us something but also
can enable us to grow. Just like an athlete needs to fatigue a muscle for that
muscle to grow, we need to go through certain experiences to achieve
spiritual maturity. The disciplinarian answer refers to statements such as “I
am suffering because of my sins.” Here suffering is conceived as a
punishment from God. God is imagined to be like a parent, putting us back
on track when we have gone wayward. This response to suffering has been
very important to Jews, as they have struggled to make sense of their
collective suffering as a people during, for example, the Babylonian exile.

Non-Monotheistic Responses
From the religions of India, two key ideas related to suffering are especially
noteworthy: reincarnation and karma (discussed previously in Chapter 19).
These traditions suggest that all of life is suffering and that the only way to
escape suffering is to be released from life.15 This does not mean, however,
that suicide or death is the answer; the goal, rather, is liberation. The claim
here is that human beings and other beings are caught in an endless cycle of
birth, death, and rebirth (reincarnation), and, depending on how one acted in
one’s previous life, one accrues karma, which prevents one from attaining
liberation. But there are methods of becoming free of karma; these basically
involve living a moral life and practicing spiritual disciplines such as various
forms of yoga. Over many lives – sometimes over thousands of years – a soul
is able to exit the cycle and therefore cease to suffer.
Because Hinduism and Buddhism are not monotheistic religions, they do
not face the same theological problems that monotheistic religions face with
regard to suffering. There is no God whose goodness or power is somehow in
doubt because of the reality of suffering. Rather, suffering in this life is
understood to be a result of accrued karma in a previous life. In some
traditions, one’s caste is determined by a previous life (one’s soul travels
through all of the stations of life16); one’s gender is determined by a previous
life (one moves closer to liberation by being born as a male17); and if one is
born with a birth defect, this, too, can be the result of karma. As one scholar
of Buddhism explains, “If bad actions are not serious enough to lead to a
lower birth, they can affect the nature of a human rebirth: stinginess leads to
being poor, injuring beings leads to frequent illnesses, and anger leads to
being ugly.”18
The relationship between suffering and desire deserves special attention.
Siddartha Gautama, or the Buddha, observed suffering in four aspects of life:
birth, aging, disease, and death. While he concluded that some pain is
unavoidable, he also observed that suffering seems to be caused
unnecessarily by desire. One contemporary Tibetan Lama speaks about the
Buddha’s insights in this way:

When you begin to desire something, by definition that means you

haven’t got it yet. While you are chasing that desire, there is a constant
feeling of being unfulfilled. You are waiting and hoping for something
that has yet to happen. And when you finally attain what you want, it is
typically not as satisfying as you had hoped .... This continuous cycle of
desire and dissatisfaction makes people unhappy.19

Desire, then, is another explanation for suffering, so controlling desire is key

in mitigating suffering.

Practical Theodicies
When reading the religious responses to suffering offered above – both from
Christianity and from Hinduism and Buddhism – we expect that many of our
readers will have been dissatisfied with these “answers.” These traditional
responses to us seem too detached from human experience to be satisfying.
While each explanation may have some truth to it, they each risk
exacerbating suffering. It would seem offensive to say “The reason you have
cancer is because God is punishing you for the sins of your youth” or “The
reason your child is autistic is on account of accrued karma from a previous
life.” What is needed, it seems to us, is theological reflection from the ground
up as opposed to theological reflection from the top down. We now turn to
such perspectives.
In Partnership with the Dying, David Smith (1939–) writes about
interviews that he conducted with some thirty health care professionals in the
early 2000s.20 Health care professionals face traumatic and acute suffering on
a routine basis, and in his interviews he discovered that this suffering
sometimes proves to be problematic for their religious beliefs. Smith argues
that these kinds of experiences lead chaplains and other health care
professionals to construct practical theodicies, or “fragments of beliefs,”
because many of them find the common responses to suffering articulated in
their traditions to be unsatisfying. Smith has found that health care
professionals tend to hold onto three “fragments of belief” of their tradition:

1. God is in charge;
2. God identifies with us; and
3. There is some kind of life after death.

These “fragments of belief” reflect the fact that Smith’s sample was
overwhelmingly Christian. It is unclear, from Smith’s analysis, what the
“practical theodicies” of Hindus or Buddhists (or others) would look like. In
any case, he found that the idea that “God is in charge” for his sample of
health care professionals presumes that God is powerful and good, but not
much more is claimed to be known. He notes that there seems to be a
difference between saying that “suffering is God’s will” and “God is in
charge,” and the difference entails a confidence level about how much is
known about God. He also notes that his subjects made no attempt to explain
suffering in any concrete way – suffering was simply acknowledged and they
presumed that God is still in control and that there still is a plan. Also, the
idea that “God identifies with us,” Smith found, assumes that while we may
not know why suffering exists we do know that God does not abandon us or
leave us alone. Similarly, the idea that “there is some kind of life after death”
affirms a hope that death is not the final word.
Smith’s work on theologies of suffering raises the issue of how chaplains
and other religious intellectuals might contribute to medical humanities. We
suggest that pastoral theologians are in a unique place to contribute to
medical humanities because pastoral theology critiques and revises traditional
theology in light of human experience. We now turn to a contemporary
pastoral theologian (Robert Dykstra) who has worked as a chaplain in the
emergency room setting as an example of how pastoral theologians can
contribute (and, in some sense, have already unknowingly contributed) to
medical humanities, specifically with regard to suffering. Dykstra’s essay is
especially important precisely because he was, like Smith’s subjects, in
danger of losing his faith in the face of so much unceasing suffering and
tragic death.

Pastoral Theology
In “The Intimate Stranger” Dykstra draws on his experience as a hospital
chaplain in the emergency room to explore the theological significance of
crisis situations.21 He discovered by means of this work that his previous
theological language was “flat,” meaning that it did not seem to be helpful for
others or for himself. However, this did not lead Dykstra to conclude that
theological language is unimportant; it had the opposite effect in that he was
driven to craft a new theological language.
In crafting this language, Dykstra draws on (1) the Hebrew Bible,
specifically Deuteronomy 10:17–19 where God reminds Israel that they were
once strangers in the land of Egypt and therefore instructs Israel to show the
same love to strangers; and (2) his experiences of intimacy with strangers in
the hospital. We experience God, Dykstra discovered in his own experiences,
when we are strangers and when we treat strangers with hospitality – thus he
suggests the theological metaphor of “the intimate stranger” as an image of
and for pastoral care in crisis situations. What does Dykstra mean by this
metaphor, and how can it apply to hospital settings? He suggests several
possibilities:

1. Chaplains experience patients as strangers;

2. Patients experience chaplains as strangers; and
3. Patients and chaplains alike sometimes experience themselves as
estranged from God in crisis situations (God as a Stranger).

In the midst of all of the strangeness and all of the suffering in the emergency
room, it was Dykstra’s experience that God was somehow there – not unlike
how God was with Israel when they were in the land of Egypt. This work felt,
to Dykstra, to be intimate, strange, and sacred all at once: “I had the haunting
sense that the minutes or hours I would spend with these people would be
among the most critical of their lives in terms of at least charting the course
for the future integration of, or failure to integrate, this crisis into the fabric of
meaning in their lives.”22
The idea that God is with us when we are strangers, along with the
following injunction that we are to treat strangers with hospitality because
God treated us with hospitality, becomes the basis for Dykstra’s practical
recommendations for chaplains. He notes that Israel was instructed to:

1. Advocate for the justice needs of strangers;

2. Attend to the bodily needs of strangers; and
3. Take theological responsibility and risk.

One way chaplains can be hospitable is by passing through hospital doors in

order to take information back-and-forth from health care professionals to
families, thereby helping to preserve patient autonomy in specific situations.
(It is occurs to us that this is may be more easily accomplished with chaplains
than bioethicists because bioethicists are, in many hospitals, called in only
when an ethical problem arises.) Another way chaplains can be hospitable is
by attending to the bodily needs of families, showing them where to get food
and where to go to the bathroom. Yet another way chaplains can be
hospitable is by attending to the spiritual and religious needs of patients and
their families. Chaplains are experts at listening and can help patients and
their families articulate the meaning, or lack thereof, of their suffering.
Dykstra also notes that chaplains (unlike a person’s pastor, priest, rabbi, guru,
imam, or other religious official) can hear doubts and laments in ways that
people may not be comfortable expressing with, say, their parish priest whom
they see on a regular basis. Chaplains can provide a certain kind of (sacred)
intimacy precisely because they are strangers.

Part 3: Hope
In the epigram for the chapter that tells the story of Pandora, we are told that
hope is the only blessing that humanity has left and that without hope the
suffering entailed in living would be too much to bear. Hope, in other words,
is the answer to suffering. But what is hope? And, if physicians are to
cultivate hope, what should this look like in clinical practice? To answer
these questions, we turn to a pastoral theologian and to a medical humanist.

The Nature of Hope

In “The Agent of Hope,” Donald Capps (1939–) offers a definition of hope.
He makes a distinction between “hoping” and “hopes.” Hoping is “the
perception that what one wants to happen will happen, a perception that is
fueled by desire and in response to felt deprivation.”23 Hoping, therefore, is
not an emotion; it is a way of seeing the world. Hopes are “projections that
envision the realizable and thus involve risk.”24 So hoping, in others words,
is a process or an activity fueled by desire, and hopes provide the content of
our desires. Capps also points out that our hopes change over time. When we
see that some of our hopes are not realizable (or after we achieve certain
hopes), we create new ones.
It is important to note that Capps does not use the word “realistic” to
describe hopes (he uses the word “realizable”). It does not make sense, for
Capps, to speak of “false hope,” because hope, by definition, is perceived to
be realizable. Yet, Capps writes, “To say that hope envisions the realizable
does not mean that it is bound by the practical, the sensible, the proven, or the
tried and true,” and, moreover, “the adoption of a realistic approach [to life]
can erode a hopeful approach to life, as it may cause us to settle for a less full
and vital life than would in fact be accessible to us.”25 He observes that,
when parents or other authority figures tell us to be “realistic,” they are, in
effect, telling us to give up our hopes. While this advice has good intentions,
Capps observes that we often resent such guidance because we feel as though
the person offering it does not fully understand our unique situation, and, if
they did understand us as individuals, they would not be asking us to give up
our hopes because they would understand why we perceive them to be
realizable. A difficulty for medical humanities and clinical practice is that the
line between realistic and realizable is sometimes hard to locate.

Hope in Clinical Practice

In “Hope and the Cancer Patient,” a chapter in How We Die, surgeon Sherwin
Nuland (1930–2014) writes that “[a] young doctor learns no more important
lesson than the admonition that he must never allow his patients to lose hope,
even when they are obviously dying.”26 In fleshing out what hope should
look like in clinical practice, he writes about two patients: Harvey Nuland
and Robert DeMatteis. We will present some lessons Nuland learned from
both of these patients.
Harvey Nuland is Sherwin Nuland’s brother. For the sake of clarity we will
refer to Harvey Nuland as “Harvey” and Sherwin Nuland as “Nuland.”
Nuland notes that his brother began experiencing pains in his bowels at age
sixty-two. Nuland knew immediately that this was an ominous sign. As it
turned out, his intuitions were right:

Harvey was found to have a very large intestinal cancer that had invaded
the tissues around his right colon and virtually all the draining lymph
nodes. The tumor had deposited clumps of itself on numerous surfaces
and tissues within the abdominal cavity, metastasized to at least half a
dozen sites in the liver, and bathed the whole murderous outburst in a
bellyful of fluid loaded with malignant cells – the findings could not
have been worse.27

But even after the diagnosis was confirmed, Nuland chose not to explain the
implications of the condition to his brother. Harvey’s doctors, hiding behind
medical jargon, did not explain the situation to Harvey either. Despite
decades of experience that indicated to him that he should do otherwise,
Nuland did something that he knew in his heart was wrong: He gave his
brother hope for a cure.
 And so they chose treatment. The result was that they inflicted a great deal
of pain and suffering on Harvey with no real medical benefit. “Had I been
wiser, or consulted disinterested colleagues who knew me well,” Nuland
writes, “I might have understood that my way of giving Harvey the hope he
asked for was not only a deception but, given what we know about the
toxicity of the experimental drugs, an almost certain source of added anguish
for all of us.”28 And so one of Nuland’s main points in this chapter is that
there is a difference between denial and hope. In a sense, Nuland and his
doctors did not give Harvey a chance to hope because they did not let him
know all of the facts.
Nuland also tells the story of Robert DeMatteis, a forty-nine-year-old
attorney, in this chapter to illustrate the varieties of hope. One day Bob’s
internist called Nuland to tell him that Bob had been having pains in his
abdomen, that he had blood in his stool, and that the odor of his stool had
changed – all ominous signs. After a number of tests, a tumor was found. It
was suggested to Bob that he have an operation but Bob initially refuses
though later reluctantly agreed. The operation revealed a:

poorly differentiated adenosquamous carcinoma arising in cecum

adjacent to ileocecal valve, exhibiting transmural [through the wall]
invasion into peri-colic fat, extensive lymphatic and vascular
involvement and metastases to 8 to 17 lymph nodes.29

Nuland also adds that the center of the tumor was “necrotic” and “deeply
ulcerated.” More tests were needed, but Nuland knew that Bob’s prognosis
was very poor.
Bob was the kind of patient who wanted to know all of the details. And so,
unlike with his brother, Nuland did share all of the details. Bob concluded
that he did not want to go through chemotherapy and/or radiation and was
determined to accept his fate. Nuland agreed with his decision. But at the
prodding of his wife, Bob decided to pursue treatment. However, within a
couple of weeks chemotherapy had to be stopped because of various
complications. The cancer kept spreading; his condition kept getting worse; it
was clear that Bob was dying – and so the course of treatment was changed in
order to focus on managing his pain.
 Nuland notes that Bob was a man who loved Christmas. He threw a big
party every year with lots of food and lots of laughter. As he was dying, his
wish more than anything was to host one more Christmas party. He got his
wish. And the party, by all accounts, was a huge success – everyone had a
wonderful time. He described it as one of the best that he had ever hosted.
After the party, Bob said to his wife that one has to live before one dies.
Nuland comments: “[I]n the short amount of time left to him, Bob was able to
see a form of hope that was his alone. It was the hope that he would be Bob
DeMatteis to his last breath, and that he would be remembered for the way he
lived.”30 Shortly after Christmas, Bob entered hospice care – first with a
home-care program, and then with an inpatient-care program, and he died
about a month after Christmas. Nuland notes that his gravestone reads: “And
it was always said of him that he knew how to keep Christmas well.”31 “He
had taught me,” Nuland writes, “that hope can still exist even when rescue is
impossible.”32

Conclusion
The causes of suffering – the curses from Pandora’s box – are many, but the
relief of suffering – the blessing retained from Pandora’s box – is singular:
hope. The purpose of this chapter has been to introduce the reader to the
category of suffering (as distinguished from pain) and to explore suffering
from various religious viewpoints. We have seen that religious traditions
have various responses to the “why” of suffering but that these responses are
often found to be unsatisfying, leading chaplains and others to advocate for
and to produce theological reflection that is informed by actual human
suffering. While it is not possible to relieve all of the causes of suffering, we
can do our best to create the conditions for hope.
What, finally, about the suffering of the little girl in Kevin Carter’s
photograph? Why is she suffering? We cannot, in the end, claim to know. We
find ourselves endorsing those religious intellectuals, like Paul Tillich (1886–
1965) and the Buddha, who believe that suffering is a part of human
existence. What gives us hope, however, is the social activism that was
inspired by this photograph. Perhaps one day this form of suffering – a form
of suffering that is inflicted by social forces – will cease to exist if we all do
our part. But even if suffering will always exist so long as this world exists, it
still gives us hope to know that we can nevertheless pick one another up
when one of us falls down, protecting each another from the various vultures
of life.

Summation
This chapter explored suffering and hope in the context of medicine.
Beginning with a discussion of Eric Cassell’s claim that physicians should
attend to pain and suffering, it examined possible religious answers to
patients’ existential struggles to find meaning in their illnesses; the practical
theodicies that health care professionals often construct or hold onto to help
them deal with suffering; and the nature and role of hope in patients’ lives
and clinical practice. Overall, though, this chapter attempted to emphasize
that while the causes of suffering are many, the relief of suffering, which
often comes in the form of religious explanation, is singular: hope.

Exercises for Critical Thinking and Character

Formation
Questions for Discussion
1. What do you hope for now? How have your hopes changed over the
years?
2. Describe a time when you witnessed someone else’s suffering.
3. To what extent is it the role of physicians to address suffering in the
way that Cassell uses the term?
4. If you think that physicians should attend to suffering, how would
you respond to the claim that physicians have no time to do so?

Suggested Writing Exercise

This writing exercise is divided into two parts. First, think about your worst
physical injury, and write about it in as much detail as possible. How did it
happen? How old were you? Did it leave a scar? How do you feel about it
now? Second, think about your most profound experience of suffering, and
write about it in as much detail as possible. How did it happen? Did this
experience involve a physical injury? Or was it purely an emotional
experience (such as going through a breakup or experiencing the death of a
parent)? How old were you? How do you feel about it now? After writing
about these experiences, share them, and also compare and contrast pain and
suffering in light of your own personal experience.

Suggested Viewing
The Diving Bell and the Butterfly (2007)
Hope Floats (1998)
How to Die in Oregon (2011)
Philadelphia (1993)

Further Reading
The Book of Job
Phillip Moffitt, Dancing with Life: Buddhists Insights for Finding
Meaning and Joy in the Face of Suffering
Nicholas Wolterstorff, Lament for a Son

Advanced Reading
Reuven Bulka, Judaism on Illness and Suffering
Wendy Cadge, Paging God: Religion in the Halls of Medicine
John Douglass Hall, God and Human Suffering
Stanley Hauerwas, God, Medicine, and Suffering
W. S. F. Pickering and Massimo Rosati, eds., Suffering and Evil: The
Durkheimian Legacy
Dorothee Soelle, Suffering

Journals
Journal of Hospice and Palliative Nursing
 American Journal of Hospice and Palliative Medicine

Online Resources
The American Academy of Pain Medicine
http://www.painmed.org/patientcenter/facts_on_pain.aspx
Christina Puchalski at Chautauqua Institute
http://www.youtube.com/watch?v=vQtbk1x0SB0
Harvard Business Review Blog, “A Framework for Reducing Suffering
in Health Care”
http://blogs.hbr.org/2013/11/a-framework-for-reducing-suffering-in-
health-care/
Peter Sinter on Life and Death Decision-Making
http://hwcdn.libsyn.com/p/c/d/d/cddd007e51b31c8e/Peter_Singer_on_Life_and_Deat
Making.mp3?
c_id=4491373&expiration=1385853926&hwt=5bb9b0de65fd845bfd141f6a031f4143
Ray Barfield Lecture, “God, Medicine, and Suffering”
http://www.youtube.com/watch?v=N8IP9V49JBQ
 Epilogue
Out of the crooked timber of humanity, no straight thing was ever
made.1
– Immanuel Kant

Medical humanities is a field for undergraduate and premed students, medical

students and students in other health professions, as well as practicing
physicians and health care practitioners. Medical humanities asks the most
important questions. It asks existential questions about suffering and hope,
life and death, the goals of medicine, the nature of disease, the experience of
illness, the distinctions between curing and caring. And it asks moral
questions about power in medicine, poverty and illness, just health care, and
ethical issues in care of the dying. It uses the tools and methods of the
humanities to engage these questions. As we articulate in the Introduction,
medical humanities is an inter- and multidisciplinary field that explores
contexts, experiences, and critical and conceptual issues in medicine and
health care, while supporting professional identity formation.
Character development and critical thinking are complementary goals of
medical humanities. This flows, to repeat our point in the Introduction, from
our view that medical humanities is – or should be – fueled by the pursuit of
humanitas, that compassionate stance toward others that ideally emerges
from education in the liberal arts. This humanist educational ideal, whose
origins lie in ancient Greece, was formulated by Cicero (104–43 BCE),
refashioned in the Renaissance,2 and shaped again into the idea of a “liberal
education” in Europe and the United States.3 Despite sharp criticism,4 it lives
in strong form today, for example, in the work of Martha Nussbaum
(1947–).5 The purpose of this ideal is to help form individuals who take
charge of their own minds, who are free from narrow and unreflective forms
of thought, who are compassionate and knowledgeable, and who act in the
public or professional world.
 The humanistic educational ideal applies to all students – whether one is a
medical student or a student in another health profession, whether she is an
undergraduate student in the liberal arts or sciences, or engineering, or
premed, or in some other form of preprofessional education. Knowledge,
humane feeling and action – these things are acquired slowly, individually,
and they are brought together within a person over a long period of time.
Hence, we designed this introductory text with a long view that is not simply
to bring the humanities to students but also to evoke the humanity of students
by encouraging ongoing, active engagement in interpretation of texts and
visual images, role playing, reflective writing, and discussion of moral and
ethical problems.
Yet “humanity,” as Kant (1724–1804) reminds us, is ever a crooked
timber. And students, patients and families, physicians, and other health care
professionals are not cut from a single tree. Individuals are internally divided,
shaped by conflicting values and social forces, and constrained by varieties of
class, gender, race, and age. Societies and cultures are divided as well; they
are constrained by historical circumstances of science, technology, religion,
economic development, epidemiology, and – we now have special reason to
know – climate and environment. Many human problems, in other words,
cannot be “straightened out.” They are intractable, not amenable to scientific
or technological solutions. Intractable problems lead us to ask the most
important questions. Medical humanities helps us address them with
intelligence and humility, as we see in the following brief examples of death;
suffering; and power and the pursuit of justice.
Take the problem of death, which despite the stunning accomplishments of
modern medicine, remains perhaps the defining characteristic of humanity.
Everyone who has ever lived – or will live – has died or will die. Yet in spite
of its universality, the meanings and experiences of death and care of the
dying are by no means universal. They vary according to individuals,
historical and religious contexts, conditions of public health, climate, social
class, and other factors.
The Greeks taught that death was what separated “man” from “the gods.”
For them, acknowledging and contemplating one’s mortality is the beginning
of self-knowledge. For medieval Christians, what happens after death was
more important than life in this world. Christian belief and conduct could
make the difference between an eternal life in heaven or one in hell. Until the
eighteenth century, doctors stepped aside in favor of clergy in care of the
dying. By the nineteenth century, medicine came to see its obligation as
comforting and easing the pain of the dying. In the 1960s, doctors and
hospitals came to see their new intensive care units as a means of rescuing
patients from death, which led to the view of death as a failure of medicine
and ironically undercut humane care of those who were irreversibly dying.
The history of death is also represented in art, literature, religion, and
popular culture. As we paraphrased Frank Kermode (1919–2010) earlier,
death is a fact of imagination as well as a fact of life. Despite our efforts to
deny or avoid it, the brute reality of death has always stimulated the kind of
moral and spiritual reflection made possible by the humanities. There are
many responses to death – acceptance, love, struggle, faith, care – that shape
its meaning rather than deny its reality.
Take the problem of suffering – in this context the suffering of individuals
and families who suffer from accidents, infectious or chronic disease, or
terminal illness. Suffering, we learned from Eric Cassell (1928–), “is an
affliction of the person, not the body.” Suffering is an intense form of illness,
a personal experience of disease that threatens the whole fabric of an
individual’s life. Suffering is a loss of identity, a loss of a sense of wholeness
due to pain, debilitating disease, or impending death. In Leo Tolstoy’s (1828–
1910) classic novella, The Death of Ivan Ilych, Ivan suffers from the loss of
his career, from realization that he has lived a superficial life, and from the
failure of his physicians to tell him that he is dying. His intense suffering is
partly ameliorated by his faithful caregiver Gerasim. It is alleviated only at
the very end of his life through an experience of religious transcendence (and
perhaps a kind of reconciliation with his family).
Suffering is inherent in human existence. It is rooted in the ineradicable
conflict between our infinite dreams and aspirations and our fragile, mortal
bodies, between our limited human capacities and forces beyond our control.
In Chapter 23, we learn about a classic example of undeserved suffering in
the west, which comes from the Book of Job in the Hebrew Bible. Job is a
man without sin, an upright and righteous man who suffers greatly. He comes
to question his view that the righteous are rewarded and the evil are punished.
He pleads with God to explain his suffering, to no avail. In the end, however,
Job’s faith is rewarded.
 Religion can be a source of suffering as well as of healing. Some religious
people feel that they are being punished by God. Or that there is no
explanation for their illness. Supporting hope is an essential element in relief
of suffering. For believers and nonbelievers alike, as we learned from Robert
Dykstra, the work of hospital chaplains can be crucial to relief of suffering.
Sometimes suffering cannot be ameliorated; it can only be witnessed.
Finally, take the perennial problems of the imbalance of power and the
pursuit of justice. Medical humanities, we argue in the Introduction, is not
only a scholarly and educational enterprise. It also involves moral critique
and political aspiration: among its goals are respect for individuals, protection
of the vulnerable, tolerance of difference, care of the needy, and pursuit of
justice in promoting health and providing care. In Chapter 5, we learned that
poverty has always been the primary reason why some populations are sicker
and live shorter lives than others. This is true both within nations and,
speaking globally, between developed countries of the North and developing,
impoverished countries of the South. Medicine cannot be expected to
eliminate poverty or various forms of social pathology. But physicians in
urban hospitals and emergency rooms all over the United States and
elsewhere must nevertheless respond to the patients whose bodies and minds
bear the brunt of social problems. And advocacy for the medically indigent is
one of the moral responsibilities of those in the health professions.
Medical humanities points to the connections between health and society.
It asks, Why do the poor lead shorter lives than the wealthy and what can be
done about it? It asks what prevents American health policy from providing
adequate care for all poor and uninsured individuals? What is fairness in the
distribution of health care resources? It asks, globally, do the wealthier,
developed countries have an obligation to help eliminate life-threatening
diseases in poorer countries? Or to ameliorate the drastic health effects of
climate change?
The impact of the powerful over the vulnerable is particularly expressed
along the lines of gender and race (although we have noted its effects on age,
ethnicity, or sexual orientation). One index of health disparity between men
and women, we learned from Amartya Sen’s (1933–) essay “More than 100
Million Women Are Missing,” is the artificially low ratio of women to men
in certain parts of Asia and Africa, where access to health care favors men,
and birth and abortion policies reflect a preference for male babies. We also
know that until recently, medicine has been a predominantly male profession,
which not only denied opportunity to women but has also affected their
health care in negative ways.
Racism and prejudice toward African Americans and people of color have
a grim history which continues, though in less severe form, today. We
learned about nineteenth-century experiments on black women, conducted
without their consent, which led to advances in gynecological surgery; and
about the more infamous Tuskegee study of syphilis in African American
males, which failed to treat them when penicillin became available. As if to
confirm Walter Benjamin’s (1892–1940) notion that every act of civilization
is also an act of barbarism, new biomedical knowledge has often been
obtained from other populations considered less than fully human – the
subjugated or enslaved, prisoners of war, those institutionalized in prisons,
the hospitalized indigent, and patients in asylums and mental hospitals. While
personal responsibility is now seen as a key factor in health status, the health
and longevity of African Americans compared to Caucasians has long
suffered from poverty, discrimination, and lack of access to health care. In
the 1990s, blacks lived on average six fewer years than whites and enjoyed
eight fewer years of healthy life.
Suffering, death, and injustice – medical humanities does not have singular
answers or solutions to these and other intractable questions and problems. It
equips students with stories, insights, angles of vision, images, critical
thinking skills and knowledge with which to respond. Medical humanities
asks students to learn about the history of biomedical progress and to
understand the existential and ethical problems it poses. It teaches students to
read literature closely, in order to better understand themselves, improve their
narrative competence, expand the range of their empathy, and strengthen their
capacity to care. Medical humanities teaches students how to think about the
goals of medicine. It shows them the historical context of ethical problems,
and demonstrates the sometimes ambiguous power of religion and spirituality
in suffering and patient care.
Figure 24. Hands Holding the Void, Alberto Giacometti. Yale University
Art Gallery, New Haven, Connecticut, Anonymous gift. © 2013 Alberto
Giacometti Estate/Licensed by VAGA and ARS, New York, NY.

Medical humanities will never straighten out the crooked timber of

humanity. Instead, it cultivates awareness of limits and respect for difference
in health care. It also opposes abuse of power and aspires to justice in
medicine and health policy. Above all, it engages students in their own
learning and in the development of their own humanity. It helps prepare them
for a life of reflective practice and action in the professional and public
worlds.
 Notes

Introducing Medical Humanities

1 Cited in Laurence McCullough, “The Discourses of Practitioners in

Eighteenth-Century Britain,” in The Cambridge World History of Medical
Ethics, eds. Robert Baker and Laurence McCullough (New York: Cambridge
University Press, 2009), 409.

2 Steven G. Hsi, Closing the Chart: A Dying Physician Examines Family,

Faith, and Medicine (Albuquerque: University of New Mexico Press, 2008),
3.

3 Ibid.

4 Ibid., 6–7.

5 Ibid., 4.

6 For more on this topic, see Thomas Cole and Nathan Carlin, “Faculty
Health and the Crisis of Meaning: Humanistic Diagnosis and Treatment,” in
Faculty Heath in Academic Medicine: Physicians, Scientists, and the
Pressures of Success, eds. Thomas Cole, Thelma Jean Goodrich, and Ellen
Gritz (New York: Springer, 2008), 147–156.

7 Ronald A. Carson, “Introduction,” in Practicing the Medical Humanities:

Engaging Physicians and Patients, eds. Ronald A. Carson, Chester R. Burns,
and Thomas R. Cole (Hagerstown, MD: University Publishing Group, 2003),
1.
8 See David Barnard, “The Coevolution of Bioethics and the Medical
Humanities with Palliative Medicine, 1967–1997,” Journal of Palliative
Medicine 1(1998): 187–193.

9 Brian Hurwitz, “Textual Practices in Crafting Bioethics Cases,” Journal of

Bioethical Inquiry 9 (2012): 395–401.

10 For example, see Jack Coulehan, “Viewpoint: Today’s Professionalism:

Engaging the Mind but Not the Heart,” Academic Medicine 80 (2005): 892–
898. Also see Mary Beach, et al., “Relationship-Centered Care: A
Constructive Reframing,” Journal of General Internal Medicine 21 (2006):
S3–S8. See, too, Harold Koenig, Spirituality in Patient Care (Philadelphia
and London: Templeton Foundation Press, 2007); and Rita Charon, Narrative
Medicine: Honoring the Stories of Illness (Oxford: Oxford University Press,
2006).

11 John Stephens, The Italian Renaissance: The Origins of Intellectual and

Artistic Change before the Reformation (London: Longman, 1990), chs. 3–5;
Robert Proctor, Education’s Great Amnesia: Reconsidering the Humanities
from Petrarch to Freud (Bloomington: Indiana University Press, 1988), part
1.

12 Lionel Trilling, “The Uncertain Future of the Humanistic Educational

Ideal,” The American Scholar 44 (1974–1975): 52–67. Reprinted as Lionel
Trilling, “The Uncertain Future of the Humanistic Educational Ideal,” in The
Last Decade: Essays and Reviews 1965–75, ed. Diana Trilling (Harcourt
Brace Jovanovich, 1981), 160–176.

13 Martha Nussbaum, Cultivating Humanity: A Classical Defense of Reform

in Liberal Education (Cambridge, MA: Harvard University Press, 1998); also
see Martha Nussbaum, Not for Profit: Why Democracy Needs the Humanities
(Princeton, NJ: Princeton University Press, 2010).

14 Commission on the Humanities, The Humanities in American Life

(Berkeley: University of California Press, 1980), 1.
15 Ronald S. Crane, The Idea of the Humanities and Other Essays (Chicago:
University of Chicago Press, 1967).

16 Cathy Davidson and David Goldberg, “Engaging the Humanities,”

Profession (2004): 42–62; see also Immanuel Wallerstein and Richard Lee,
Overcoming the Two Cultures: Science versus the Humanities in the Modern
World-System (Boulder: Paradigm Press, 2004).

17 Frank Huisman and John Harley Warner, “Medical Histories,” in Medical

Histories: The Stories and Their Meanings, eds. Frank Huisman and John
Harley Warner (Baltimore, MD: Johns Hopkins University Press, 2004), 4.

18 Cited in J. Warner, “The Humanizing Power of Medical History:

Responses to Biomedicine in the 20th Century United States,” Medical
Humanities 37 (2011): 93.

19 See The American Osler Society: www.americanosler.org.

20 See Michel Foucault, Power/Knowledge: Selected Interviews and Other

Writings, 1972–1977, ed. Colin Gordon (New York: Pantheon Books, 1980);
Jean-Francois Lyotard, The Postmodern Condition: A Report on Knowledge,
trans. Geoff Bennington (Minneapolis: University of Minnesota Press, 1984);
and Luce Irigaray, Speculum of the Other Woman, trans. Gillian C. Gill
(Ithaca, NY: Cornell University Press, 1985). Also see Cary Wolfe, What is
Posthumanism? (Minneapolis: University of Minnesota Press, 2010).

21 Thomas R. Cole and Faith Lagay, “How the Medical Humanities Can
Help Revitalize Humanism and How a Reconfigured Humanism Can Help
Nourish the Medical Humanities,” in Practicing the Medical Humanities,
eds. Ronald A. Carson, Chester R. Burns, and Thomas R. Cole (Hagerstown,
MD: University Publishing Group, 2003), ch. 5. Also see Allan Bloom, The
Closing of the American Mind (New York: Simon and Schuster, 1987).

22 Edmund Pellegrino, “Medical Humanism and Technologic Anxiety,” in

Humanism and the Physician, ed. Edmund Pellegrino (Knoxville: University
of Tennessee Press, 1979), 9.

23 Ibid., 10.

24 Ibid., 3.

25 H. Martyn Evans and David Greaves, “Medical Humanities – What’s in a

Name?” Medical Humanities 28 (2002): 1–2.

26 See, for example, H. Martyn Evans and Jane MacNaughton, “Should

Medical Humanities Be a Multidisciplinary or an Interdisciplinary Study?”
Medical Humanities 30 (2004): 1–4.

27 Cf. David Smith, “Quality, not Mercy: Some Reflections on Recent Work
in Medical Ethics,” Medical Humanities Review 5 (1991): 9–18.

28 David Greaves and H. Martyn Evans, “Coming of Age? Association for

Medical Humanities Holds First Annual Conference,” Medical Humanities
29 (2003): 57–8; Joanna Rogers, “Being Skeptical about the Medical
Humanities,” Journal of Medical Humanities 16 (1995): 265–277; Delese
Wear, “The Medical Humanities: Toward A Renewed Praxis,” Journal of
Medical Humanities 30 (2009): 209–220.

29 See www.healthhumanities.org.

30 Therese Jones, Delese Wear, and Lester D. Friedman, eds., The Health
Humanities Reader (New Brunswick, NJ: Rutgers University Press, 2014).

31 See, for example, in our own work, Jeffrey P. Spike, Thomas R. Cole,
and Richard Buday, The Brewsters: An Interactive Adventure in Ethics for
the Health Professions (Houston, TX: University of Texas Health Science
Center, 2011). Also see Nathan Carlin et al., “The Health Professional Ethics
Rubric: Practical Assessment in Ethics Education for Health Professional
Schools,” Journal of Academic Ethics 9 (2011): 277–290; and Nathan Carlin,
“Bioethics and Pastoral Concern,” Pastoral Psychology 62 (2013): 129–138.

32 Anne Hudson Jones, “Reflections, Projections, and the Future of

Literature and Medicine,” in Literature and Medicine: A Claim for a
Discipline, eds. Delese Wear, Martin Kohn, and Susan Stocker (Society for
Health and Human Values, 1987): 29–39.

33 Jeffrey Bishop, “Rejecting Medical Humanism: Medical Humanities and

the Metaphysics of Medicine,” Journal of Medical Humanities 29 (2008):
15–25.

34 Jones, Wear, and Friedman, The Health Humanities Reader, 5.

35 Raimo Puustinen, Mikael Leiman, and Anna Maria Viljanen, “Medicine

and the Humanities: Theoretical and Methodological Issues,” Medical
Humanities 29 (2003): 77.

36 George L. Engel, “The Clinical Application of the Biopsychosocial

Model,” American Journal of Psychiatry 137 (1980): 535–544.

37 Eric J. Cassell, The Nature of Suffering and the Goals of Medicine (New
York: Oxford University Press, 2004).

38 Edmund Pellegrino and David Thomasma, A Philosophical Basis of

Medical Practice: Toward a Philosophy and Ethic of the Healing Professions
(New York: Oxford University Press, 1981).

39 Christina M. Pulchalski and Betty Ferrell, Making Health Care Whole

(West Conshohocken, PA: Templeton Press, 2010); Christina M. Pulchalski,
A Time for Listening and Caring (New York: Oxford University Press, 2006).

40 Puustinen, Leiman, and Viljanen, “Medicine and the Humanities,” 77–8.

41 Ibid., 78.

42 Engel, “The Clinical Application of the Biopsychosocial Model,” 535–

544.

43 Cassell, The Nature of Suffering.

44 Puustinen, Leiman, and Viljanen, “Medicine and the Humanities,” 78.

45 See Leon Eisenberg, “Disease and Illness: Distinctions between

Professional and Popular Ideas of Sickness,” Culture, Medicine, and
Psychiatry 1 (1977): 11. Also see Arthur Kleinman, Patients and Healers in
the Context of Culture: An Exploration of the Borderland between
Anthropology, Medicine, and Psychiatry (Berkeley: University of California
Press, 1980), 72.

46 See Charon, Narrative Medicine.

47 See P. Rancour, “Guided Imagery: Healing When Curing is Out of the

Question,” Perspectives in Psychiatric Care 27 (1991), 30–33.

48 Howard Brody, Stories of Sickness (New York: Oxford University Press,

2002); Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the
Human Condition (New York: Basic Books, 1989).

49 Thomas R. Cole and Sharon Ostwald, Living after Stroke: Conversations

with Couples (Chicago, Terra Nova Films, 2006).

50 Elaine Scarry, The Body in Pain: The Making and Unmaking of the
World (New York: Oxford University Press, 1987); Deborah Padfield, Brian
Hurwitz, and Charles Pither, Perceptions of Pain (Stockport, UK: Dewi
Lewis Publishing, 2003).
51 David Greaves and Martyn Evans, editors of the journal Medical
Humanities, note that medical humanities developed for many years in the
United States but that only in recent years – they were writing in the year
2000 – has medical humanities developed in Great Britain. They offer two
competing definitions of the field, each with its own goal. One is that medical
humanities adds to the curricula of medical school, introducing humanistic
education to medical education that is rooted in basic science. Another
approach, a more political approach, is that all of medical education needs to
be reformulated in light of medical humanities, so that technical knowledge
and humanistic knowledge are integrated throughout the curricula and
forming the knowledge base of medicine. See David Greaves and Martyn
Evans, “Conceptions of Medical Humanities,” Medical Humanities 26
(2000): 65.

52 Coulehan, “Viewpoint,” 895.

53 K. Danner Clouser, “Humanities in Medical Education: Some

Contributions,” Journal of Medical Philosophy 15 (1990): 289–301.

54 See Robert Coombs, Surviving Medical School (London and New Delhi:
Sage Publications, 1998); also see Allan Peterkin, Staying Human during
Residency Training (Toronto, ON: University of Toronto Press, 2008).

55 Edmund D. Pellegrino, “Educating the Humanist Physician,” JAMA 227

(1974): 1288.

56 Ibid.

57 Ibid., our emphasis.

58 Ronald A. Carson, “Engaged Humanities: Moral Work in the Precincts of

Medicine,” Perspectives in Biology and Medicine 80 (2007): 321–333.

59 See Nathan Carlin, Thomas Cole, and Henry Strobel, “Guidance from the
Humanities for Professional Formation,” in Oxford Textbook of Spirituality in
Healthcare, eds. Mark Cobb, Christina Puchalski, and Bruce Rumbold
(Oxford: Oxford University Press, 2012), 443–450.

60 Mohammadreza Hojat, Salvatore Mangione, Thomas Nasca, Susan

Rattner, James Erdmann, Joseph Gonnella, and Mike Magee, “An Empirical
Study of Decline in Empathy in Medical School,” Medical Education 38
(2004): 934–941.

61 Carlin, Cole, and Strobel, “Guidance from the Humanities for

Professional Formation.”

62 See Thomas Cole and Nathan Carlin, “The Suffering of Physicians,” The
Lancet 374 (2009): 1414–1415.

PART I HISTORY AND MEDICINE

1 The following discussion of the history of medicine in the twentieth-

century United States relies on John Harley Warner, “The Humanizing Power
of Medical History: Responses to Biomedicine in the 20th century United
States,” Medical Humanities 37 (2011): 91–96.

2 Susan M. Reverby and David Rosner, “‘Beyond the Great Doctors’

Revisited: A Generation of the “New Social History of Medicine,” in
Locating Medical History, eds. Frank Huisman and John Harley Warner
(Baltimore, MD: Johns Hopkins University Press, 2004), 167–193; see also
David Rosner and Gerald Markowitz, eds., Dying for Work: Workers’ Safety
and Health in 20th-Century America (Bloomington: Indiana University Press,
1987); David Rothman and Sheila Rothman, The Willowbrook Wars (New
York: Harper and Row, 1974); Howard Markel, Six Major Epidemics That
Have Invaded America since 1900 and the Fears They Have Unleashed (New
York: Pantheon Books, 2004).
3 See Jacalyn Duffin (ed.), Clio in the Clinic: History in Medical Practice
(New York: Oxford University Press, 2005).

4 Cited in Warner, “The Humanizing Power of Medical History,” 93.

5 Ibid.

6 Henry Sigerist, The Great Doctors: A Biographical History of Medicine

(New York: W. W. Norton, 1933); American Medicine (New York: W. W.
Norton, 1934); Socialized Medicine in the Soviet Union (New York: W. W.
Norton, 1937); Primitive and Archaic Medicine (New York: Oxford
University Press, 1951); and Early Greek, Hindu, and Persian Medicine
(New York: Oxford University Press, 1961).

7 Erwin H. Ackerknecht, Therapeutics from the Primitives to the 20th

Century (Ann Arbor, MI: Hafner Press, 1973); Rudolph Virchow (The
Development of Science) (North Stratford, NH: Ayer Company Publishing,
1953); A Short History of Medicine (Baltimore, MD: Johns Hopkins
University Press, 1982); Malaria in the Upper Mississippi Valley, 1760–1900
(Ann Arbor, MI: Arno Press, 1977).

8 George Rosen, The History of Miners’ Diseases (New York: Henry

Schuman, 1943); and A History of Public Health (New York: MD
Publications, 1958).

9 Warner, “The Humanizing Power of Medical History,” 94.

10 Howard Markel, When Germs Travel: Six Major Epidemics That Have
Invaded America Since 1900 and the Fears They Have Unleashed (New
York: Pantheon Books, 2004).

11 Edmund D. Pellegrino, ed., Humanism and the Physician (Knoxville:

University of Tennessee Press, 1979).
12 Susan Reverby and David Rosner, eds., Health Care in America: Essays
in Social History (Philadelphia: Temple University Press, 1979).

13 Howard I Kushner, “Medical Historians and the History of Medicine,”

The Lancet, 372, n. 9640 (30 August 2008): 710–711.

14 Roy Porter, The Greatest Benefit to Mankind (New York: Norton Press,
1997). See also Sheldon Watts, Disease and Medicine in World History (New
York: Routledge, 2003); Lois Magner, A History of Medicine (New York: M.
Dekker, 1992); Paul Strathern, A Brief History of Medicine: From
Hippocrates to Gene Therapy (London: Robinson, 2005); and Philip Rhodes,
An Outline History of Medicine (London: Butterworths, 1985).

15 Jacalyn Duffin, A History of Medicine: A Scandalously Short

Introduction, 2nd ed. (Toronto, ON: University of Toronto Press, 2010).

16 Charles Rosenberg, The Care of Strangers:The Rise of America’s

Hospital System (New York: Basic Books, 1987); The Cholera Years: The
United States in 1832, 1849, and 1866 (Chicago: Chicago University Press,
1987); Our Present Complaint: American Medicine, Then and Now
(Baltimore, MD: Johns Hopkins University Press, 2007); Explaining
Epidemics and other Studies in the History of Medicine (Cambridge:
Cambridge University Press, 1992); and Framing Disease: Studies in
Cultural History (Rutgers, NJ: Rutgers University Press, 1992).

17 Mark Jackson, The Oxford Handbook of the History of Medicine (Oxford

and New York: Oxford University Press, 2011).

18 Robert Baker and Laurence McCullough, The Cambridge World History

of Medical Ethics (Cambridge: Cambridge University Press, 2008).

19 Guenter Risse, Mending Bodies, Saving Souls: A History of Hospitals

(New York: Oxford University Press, 1999).
20 Charles Rosenberg, The Care of Strangers.

21 Ellen S. More, Elizabeth Fee, and Manon Parry, eds., Women Physicians
and the Cultures of Medicine (Baltimore, MD: Johns Hopkins University
Press, 2009); and Ellen S. More, Restoring the Balance: Women Physicians
and the Profession of Medicine, 1850–1995 (Cambridge, MA: Harvard
University Press, 1999).

22 Thomas Bonner, Becoming a Physician: Medical Education in Britain,

France, Germany, and the United States, 1750–1945 (New York: Oxford
University Press, 1995).

23 Kenneth Ludmerer, Learning to Heal: The Development of American

Medical Education (New York: Basic Books, 1985); and A Time to Heal:
American Medical Education from the Turn of the Century to the Era of
Managed Care (New York: Oxford University Press, 1999).

24 Stanley Reiser, Medicine and the Reign of Technology (Cambridge:

Cambridge University Press, 1978); and Technological Medicine: The
Changing World of Doctors and Patients (Cambridge: Cambridge University
Press, 2009).

25 John Harley Warner, The Therapeutic Perspective: Medical Practice,

Knowledge, and Identity in America, 1820–1885 (Cambridge, MA: Harvard
University Press, 1986).

26 Paul Starr, The Social Transformation of American Medicine (New York:

Basic Books, 1982).

27 David Rothman, Strangers at the Bedside: A History of how Law and

Bioethics Transformed Medical Decision Making (New York: Basic Books,
1991).

28 William McNeill, Plagues and Peoples (New York: Anchor Press, 1976).
29 J.N. Hays, The Burdens of Disease: Epidemics and Human Response in
Western History (New Brunswick, NJ and London: Rutgers University Press,
1998).

30 Dorothy Porter, Health, Civilization and the State: A History of Public

Health from Ancient to Modern Times (London and New York: Routledge,
1999).

31 Philippe Ariès, Western Attitudes Toward Death: From the Middle Ages
to the Present (Baltimore, MD: Johns Hopkins University Press, 1974); and
Philippe Ariès, The Hour of Our Death (New York: Alfred E. Knopf, 1981).

32 Emily Abel, The Inevitable Hour: A History of Caring for Dying Patients
in America (Baltimore, MD: Johns Hopkins University Press, 2013).

1 The Doctor-Patient Relationship

1 Francis Peabody, “The Care of the Patient,” The Journal of the American
Medical Association 88, no. 12 (March 1927): 877–882.

2 Stanley J. Reiser, A. J. Dyck, and W. J. Curran, “Hippocrates, Precepts

VI,” in Ethics in Medicine: Historical Perspectives and Contemporary
Concerns, eds. Stanley J. Reiser, A. J. Dyck, and W. J. Curran (Cambridge,
MA: MIT Press, 1977), 5.

3 Tom Beauchamp and James Childress, Principles of Biomedical Ethics

(Oxford: Oxford University Press, 2001).

4 Quoted in Jay Katz, The Silent World of Doctor and Patient (Baltimore:
Johns Hopkins University Press), 6.

5 Ibid.
6 See Owsei Temkin, “What Does the Hippocratic Oath Say?” in On Second
Thought: Essays on the History of Medicine (Baltimore: The Johns Hopkins
University Press, 2002), 21–28; and Steven Miles, The Hippocratic Oath and
the Ethics of Medicine (New York: Oxford University Press, 2004).

7 The Hippocratic Oath, trans. Michael North, National Library of

Medicine, 2002:http://nlm.nih.gov/hmd/greek/greek_oath.html.

8 According to one translation, Galen declares that “The physician must aim
above all at helping the sick; if he cannot, he should not harm them.” Quoted
in Steven Miles, The Hippocratic Oath and the Ethics of Medicine, 143.

9 Roy Porter, The Greatest Benefit to Mankind: A Medical History of

Humanity from Antiquity to the Present (London: HarperCollins, 1997), 110.

10 Col. 4:14.

11 Darrel Amundsen, “The Discourses of Early Christian Medical Ethics,”

in The Cambridge World History of Medical Ethics, eds. Robert Baker and
Laurence McCoullough (Cambridge and New York: Cambridge University
Press, 2008), 209.

12 Faye Marie Getz, Healing and Society in the Middle Ages (Madison:
Wisconsin University Press, 1991), 19.

13 For more on female mystics, see Monica Green, Women’s Healthcare in

the Medieval West: Texts and Contexts (Aldershot, UK: Ashgate, 2000).

14 Quoted in Gianna Pomata, Contracting a Cure: Patients, Healers, and

the Law in Early Modern Bologna (Baltimore and London: Johns Hopkins
University Press, 2001), 120.

15 J. N. Hays, The Burdens of Disease: Epidemics and Human Response in

Western History (New Brunswick, NJ: Rutgers University Press), 91.
16 Roy Porter, Greatest Benefit, 171.

17 Dorothy Porter and Roy Porter, Patient’s Progress: Doctors and

Doctoring in Eighteenth-Century England (Stanford, CA: Stanford
University Press 1989), 6.

18 Ibid., 117.

19 Quoted in Robert Baker, “Discourses of Practitioners in Nineteenth- and

Twentieth-Century Britain and the United States,” in The Cambridge World
History of Medical Ethics, eds. Robert Baker and Laurence McCullough
(Cambridge: Cambridge University Press, 2008), 447.

20 Ibid., 448–449.

21 Ibid., 447–453.

22 Lawrence Jonson, A Life-Centered Approach to Bioethics: Biocentric

Ethics (Cambridge: Cambridge University Press, 2011).

23 According to one survey, the average patient in the United States saw a
doctor 2.9 times per year in 1930; the average number of visits doubled by
1990. Porter, Greatest Benefit, 685.

24 George Bernard Shaw, The Doctor’s Dilemma (New York: The Trow
Press, 1911), lxxxi.

25 Porter, Greatest Benefit, 685.

26 Edward Shorter, Doctors and Their Patients: A Social History (New

Brunswick, NJ: Transaction Books, 1991), 86.

27 Christopher Crenner, Private Practice in the Early Twentieth-Century

Medical Office of Dr. Richard Cabot (Baltimore: The Johns Hopkins
University Press, 2005), 245; see also James Schafer, The Business of Private
Medical Practice (New Brunswick, NJ: Rutgers University Press, 2014).

28 Ibid., 246.

29 For literary portraits, see William Carlos Williams’s “Face of Stone”

(1938) or “The Use of Force” (1938).

30 Arthur Hertzler, The Horse and Buggy Doctor (New York and London:
HarperCollins, 1938).

31 Quoted in Porter, Greatest Benefit, 675.

32 Charles Rosenberg, The Care of Strangers (New York: Basic Books,

1987), 341.

33 Ibid.

34 Joel Howell, Technology in the Hospital: Transforming Patient Care in

the Early Twentieth Century (Baltimore: Johns Hopkins University Press,
1995), 62.

35 Christopher Crenner, Private Practice, 30–42.

36 Quoted in Porter, Greatest Benefit, 682.

37 Peabody, “The Care of the Patient,” 882.

38 Aaron Wildavsky, “Doing Better and Feeling Worse: The Political

Pathology of Health Policy,” Daedalus 106, no. 1 (Winter 1977), 105.

39 See Charles Rosenberg, The Care of Strangers, 311; and Porter, Greatest
Benefit, 682–683.

40 Paul Starr, The Social Transformation of American Medicine (New York:

Basic Books, 1982), 362–363; see also, Paul Starr, “Social Transformation
Twenty Years On,” Journal of Health Politics, Policy and Law 29, no. 4–5,
(August–October 2004), 1005–1119.

41 Roughly one-third of physicians were solo practitioners in 2005,

according to the Center for Studying Health System Change (HSC):
http://www.hschange.org/CONTENT/941/.

42 See, for instance, Atul Gawande, “The Cost Conundrum: What a Texas
Town Can Teach Us about Health Care,” The New Yorker, June 1, 2009.

43 See Thomas R. Cole, T. Goodrich, and Ellen Gritz, eds., Faculty Health
in Academic Medicine: Physicians, Scientists and the Pressures of Success
(Totowa, NJ: Humana Press, 2009); and Thomas R. Cole and Nathan Carlin,
“The Suffering of Physicians,” The Lancet 374 (October 2009): 1414–1415.

44 See, for instance, the monthly patient satisfaction surveys conducted by

the Hospital Care Quality Information from the Consumer Perspective
(HCAHPS):
http://www.hcahpsonline.org/files/September%202010%20State%20Summary%20of%20

45 Louise Lemieux-Charles and Wendy L. McGuire, “What do We Know

about Health Care Team Effectiveness? A Review of the Literature,” Medical
Care Research and Review 63, no. 3 (2006): 263–300.

2 Constructing Disease

1 Lewis Carroll, Through the Looking Glass (New York: Norton, 1992),
163.
2 Roy Porter, The Greatest Benefit to Mankind: A Medical History of
Humanity from Antiquity to the Present (London: HarperCollins, 1997), 158.

3 J. N. Hays, The Burdens of Disease: Epidemics and Human Response in

Western History (New Brunswick, NJ: Rutgers University Press, 1998), 10.

4 Quoted in Stephen Miles, The Hippocratic Oath and the Ethics of

Medicine (New York: Oxford University Press, 2004), 20.

5 Hippocrates, “Airs, Waters, Places,” in Hippocratic Writings, trans. J.

Chadwick and W. N. Mann, ed. G. E. R. Lloyd (New York: Penguin, 1978),
148.

6 In Mirko Grmek’s opinion, tuberculosis had “flourished” since the

Neolithic Age. Mirko Grmek, Diseases in the Ancient Greek World
(Baltimore, MD: Johns Hopkins University Press, 1989), 133.

7 Ibid., 184–190.

8 Ryuji Ishitawa, “On the Moral Aspect of Chronic Illness from the
Viewpoint of Comparative Medical Thought,” Journal of Philosophy and
Ethics in Health Care and Medicine 1 (July 2006): 56–58.

9 Owsei Temkin, Galenism; Rise and Decline of a Medical Philosophy

(Ithaca, NY: Cornell University Press, 1979), 39.

10 Ibid., 12.

11 Porter, Greatest Benefit, 84.

12 Hays, Burdens of Disease, 78–79.

13 “Three Byzantine Saints; Contemporary Biographies Translated from the

Greek,” trans. Elizabeth Dawes and Norman H. Baynes, in Medieval
Medicine: A Reader, ed. Faith Wallis (Toronto: University of Toronto Press,
2010), 50.

14 Hays, Burdens of Disease, 22.

15 Roy Porter, Greatest Benefit, 26.

16 Kenneth Kiple, The Cambridge World History of Disease, (Cambridge:

Cambridge University Press, 1993),18.

17 Mark Harrison, Disease and the Modern World (Cambridge, UK: Polity
Press, 2004), 23.

18 Porter, Greatest Benefit, 168.

19 Kiple, The Cambridge World History of Disease, 15.

20 Hays, Burdens of Disease, 63–64.

21 Gerald Grob, The Deadly Truth: A History of Disease in America

(Cambridge, MA: Harvard University Press, 2002), 20.

22 Harrison, Disease and the Modern World, 33.

23 Hays, Burdens of Disease, 66–67.

24 Charles C. Mann, 1493: Uncovering the New World Columbus Created

(New York: Alfred A. Knopf, 2011).

25 Porter, Greatest Benefit, 167.

26 Quoted in Porter, Greatest Benefit, 246.

27 Jason E. Glenn, “Dehumanization, the Symbolic Gaze and the Production

of Biomedical Knowledge,” in Black Knowledges/Black Struggles: Essays in
Critical Epistemology, eds. Jason Ambroise and Sabine Broeck (London:
Liverpool University Press, 2013), 6.

28 Harrison, Disease and the Modern World, 53–56.

29 Charles Rosenberg, “The Therapeutic Revolution: Medicine, Meaning,

and Social Change in Nineteenth-Century America,” in The Therapeutic
Revolution: Essays in the History of American Medicine, eds. Morris J. Vogel
and Charles E. Rosenberg (Philadelphia, University of Pennsylvania Press),
3–25.

30 John Harley Warner, The Therapeutic Perspective: Medical Practice,

Knowledge, and Identity in America, 1820–1885 (Cambridge, MA: Harvard
University Press, 1986), 587.

31 Kiple, The Cambridge World History of Disease, 16.

32 Hays, Burdens of Disease, 219.

33 Michel Foucault, The Birth of the Clinic: An Archaeology of Medical

Perception, trans. A. M. Sheridan (London: Tavistock Publication Limited,
1973).

34 Walter Benjamin, Illuminations, trans. Harry Zohn (New York: Schocken

Books, 1985), 256.

35 Glenn, “Dehumanization,” 1.

36 Quoted in Todd L. Savitt, “The Use of Blacks for Medical

Experimentation and Demonstration in the Old South,” The Journal of
Southern History 48, no. 3 (1982): 331–348.

37 Porter, Greatest Benefit, 432.

38 Harrison, Disease and the Modern World, 119.

39 Kiple, The Cambridge World History of Disease, 19.

40 Porter, Greatest Benefit, 441.

41 See James Jones, Bad Blood: The Tuskegee Syphilis Experiment (New
York: The Free Press, 1981).

42 National Commission for the Protection of Human Subjects of

Biomedical and Behavioral Research, The Belmont Report: Ethical
Principles and Guidelines for the Protection of Human Subjects, April 18th,
1979. Accessed May 13, 2013:
http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html.

43 Abdel Omran, “The Epidemiologic Transition: A Theory of the

Epidemiology of Population Change,” The Milbank Memorial Fund
Quarterly 49, no. 4 (1971): 509–538.

44 Laura B. Shrestha, “CRS Report for Congress: Life Expectancy in the

United States.” Congressional Research Serve, August 16, 2006. Accessed
May 16, 2013: http://www.fas.org/sgp/crs/misc/RL32701.pdf.

45 Arno Karlen, Man and Microbes: Diseases and Plagues in History and
Modern Times (New York: Putnam, 1995).

46 Kiple, The Cambridge World History of Disease, 6.

47 The President’s Council on Bioethics, Beyond Therapy: Biotechnology
and the Pursuit of Happiness (New York: Regan Books, 2003).

48 Peter Conrad, The Medicalization of Society: On the Transformation of

Human Conditions into Treatable Disorders (Baltimore, MD: The Johns
Hopkins University Press, 2007), 1.

49 American Psychiatric Association, Diagnostic and Statistical Manual of

Mental Disorders II, 2nd ed. (Washington, DC: American Psychiatric
Association, 1974).

50 Allen Frances, Saving Normal: An Insider’s Revolt Against Out-of-

Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization
of Ordinary Life (New York: William Morrow, 2013).

51 Conrad, The Medicalization of Society, 4.

3 Educating Doctors

1 William Osler, The Quotable Osler, eds. Mark E. Silverman, T. Jock

Murray, and Charles S. Bryan (Philadelphia: The American College of
Physicians, 2008), xiii.

2 Theodore Puschmann, A History of Medical Education from the Most

Remote to the Most Recent Times (1891), trans. and ed. Evan Hare
(Whitefish, MT: Kissinger Publishing, 2010), 8.

3 Ibid., 19.

4 Quoted in Fridolf Kudlien, “Medical Education in Classical Antiquity,” in

The History of Medical Education, ed. C. D. O’Malley (Berkeley: University
of California Press, 1970), 5–7.
5 Ibid., 13, 17.

6 Ibid., 18, 20.

7 Roy Porter, The Greatest Benefit To Mankind: A Medical History of

Humanity From Antiquity to the Present (London: Harpercollins, 1997), 95,
102.

8 Charles Talbot, “Medical Education in the Middle Ages,” in The History of

Medical Education, ed. C. D. O’Malley (Berkeley: University of California
Press, 1970), 76.

9 Ibid.

10 Rubin Erikkson, Andreas Vesalius’ First Public Anatomy at Bologna,

1540: An Eyewitness Report (Uppsala, SE: Almquist & Wiskell, 1959).

11 Quoted in Roy Porter, Greatest Benefit, 229.

12 Jeffrey Bishop, The Anticipatory Corpse (Notre Dame, IN: University of

Notre Dame Press, 2011).

13 Thomas Bonner, Becoming a Physician: Medical Education in Britain,

France, Germany, and the United States, 1750–1945 (New York: Oxford
University Press, 1995), 24.

14 Ibid., 21.

15 John Harley Warner, Against the Spirit of the System: The French
Impulse in Nineteenth-Century American Medicine (Princeton, NJ: Princeton
University Press, 1998).

16 Quoted in Whitfield Jenks Bell, The Colonial Physician and Other

Essays (Science History Publications, 1975), 8.

17 Quoted in William Rothstein, American Physicians in the Nineteenth

Century: From Sects to Science (Baltimore, MD: Johns Hopkins University
Press, 1985), 36.

18 Bonner, Becoming a Physician, 74.

19 Paul Starr, The Social Transformation of American Medicine (New York:

Basic Books, 1982), 47–50.

20 Kenneth Ludmerer, Learning to Heal: The Development of American

Medical Education (New York: Basic Books, 1985), 3.

21 Ibid., 9, 10.

22 Erwin Ackerknecht, Medicine at the Paris Hospital, 1794–1848

(Baltimore, MD: The Johns Hopkins Press, 1967).

23 Quoted in Porter, Greatest Benefit, 528.

24 Ludmerer, Learning to Heal, 33.

25 Charles W. Eliot, Charles W. Eliot: The Man and His Beliefs, ed. William
Allan Neilson (New York: Harper, 1926), 6.

26 Quoted in Kenneth Ludmerer, A Time to Heal: American Medical

Education From the Turn of the Century to the Era of Managed Care (New
York: Oxford University Press, 1999), 15.

27 William Osler, The Quotable Osler, eds. Mark E. Silverman, T. Jock

Murray, and Charles S. Bryan (The American College of Physicians, 2008),
203.
28 Abraham Flexner, “Medical Education in the United States and Canada:
A Report to the Carnegie Foundation for the Advancement of Teaching”
(New York: The Carnegie Foundation, 1910). Accessed April 14, 2013:
http://www.carnegiefoundation.org/sites/default/files/elibrary/Carnegie_Flexner_Report.pd

29 See Ellen S. More, Restoring the Balance: Women Physicians and the
Profession of Medicine, 1850–1995 (Cambridge, MA: Harvard University
Press, 1999), 4; and Mary Walsh, “Doctors Wanted, No Women Need
Apply”: Sexual Barriers in the Medical Profession, 1835–1975 (New Haven,
CT: Yale University Press, 1977).

30 Mary Roth Walsh, “Women in Medicine since Flexner,” in Beyond

Flexner: Medical Education in the Twentieth Century, eds. Barbara
Barzansky and Norman Gevitz (New York: Greenwood Press, 1987), 51–63.

31 Todd Savitt, “Black Medical Schools,” in Beyond Flexner: Medical

Education in the Twentieth Century, eds. Barbara Barzansky and Norman
Gevitz (Westport: Greenwood Press, 1992), 71.

32 Diversity in Medical Education, Facts & Figures 2012, “Current Status of

Racial and Ethnic Minorities in Medical Education” (Table 24b). Accessed
July 3, 2013:
https://members.aamc.org/eweb/upload/Diversity%20in%20Medical%20Education_0Fact

33 See Kenneth Ludmerer, A Time to Heal, 79, and Jonathan R. Cole, The
Great American University (New York: Perseus Books, 2009), 157.

34 Ludmerer, A Time to Heal, xxiii.

35 David Blumenthal and Greg S. Meyer, “Academic Health Centers in a

Changing Environment,” Health Affairs 12, no. 2 (1996): 201–215.

36 Ludmerer, A Time to Heal, 370.

37 See Thomas Cole, Thelma Jean Goodrich, and Ellen Gritz, eds., Faculty
Health in Academic Medicine: Physicians, Scientists, and the Pressures of
Success (Totowa, NJ: Humana Press), chs. 4, 13, 14, and 17.

38 Takakuwa, Kevin M., Nick Rugashkin, and Karen E. Herzig, What I

Learned in Medical School: Personal Stories of Young Doctors (Berkeley:
University of California Press, 2004), 78–79.

39 Molly Cooke, David M. Irby, and Bridget C. O’Brien, Educating

Physicians: A Call for Reform of Medical School and Residency (San
Francisco: Jossey-Bass, 2010), 223.

40 Ibid.

41 Core Competencies for Interprofessional Collaborative Practice, Report

of an Expert Panel (May 2011), Sponsored by the Interprofessional Education
Collaborative. Accessed November 20, 2013:
http://www.aacn.nche.edu/education-resources/ipecreport.pdf.

4 Technology and Medicine

1 Sigmund Freud, Civilization and Its Discontents, in The Standard Edition

of the Complete Psychological Works of Sigmund Freud, Vol. 21, ed. and
trans. James Strachey (London: Vintage Press, 2001), 91–92.

2 Stanley Reiser, Technological Medicine: The Changing World of Doctors

and Patients (Cambridge: Cambridge University Press, 2009), 187.

3 Roy Porter, The Cambridge Illustrated History of Medicine (Cambridge:

Cambridge University Press, 1996), 202.

4 Roy Porter, The Greatest Benefit to Mankind: A Medical History of

Humanity from Antiquity to the Present (London: HarperCollins, 1997), 140.

5 Bruno Halioua and Bernard Ziskind, Medicine in the Days of the Pharaohs
(Cambridge, MA and London: Harvard University Press, 2005).

6 Guido Majno, The Healing Hand: Man and Wound in the Ancient World
(Cambridge, MA: Harvard University Press, 1975), 325–424.

7 Porter, Greatest Benefit, 116–120.

8 Quoted in A. Earl Walker, The Genesis of Neuroscience, eds. Edward R.

Laws Jr. and George Udvarhelyi (Chicago: University of Chicago Press,
1998), 66.

9 Stanley Reiser, Medicine and the Reign of Technology (Cambridge:

Cambridge University Press, 1978), 69.

10 David E. Wolfe, “Sydenham and Locke on the Limits of Anatomy,”

Bulletin of the History of Medicine 25 (1961): 193–200.

11 F. N. L. Poynter and W. J. Bishop, A Seventeenth-Century Country

Doctor and his Patients: John Symcotts, 1592–1662 (Streatley, UK:
Bedfordshire Historical Record Society, 1951), 31.

12 Reiser, Reign of Technology, 19–22.

13 The following discussion is based on Reiser, Reign of Technology, 45–47,

53, 90, 107.

14 Gert H. Brieger, “From Conservative to Radical Surgery in Late

Nineteenth-Century America,” in Medical Theory, Surgical Practice, ed.
Christopher Lawrence (London, Routledge, 1992).
15 Martin S. Pernick, A Calculus of Suffering: Pain, Professionalism, and
Anesthesia in Nineteenth-Century America (New York: Columbia University
Press, 1985), 3.

16 Ibid., 58–59.

17 Nicholas L. Tilney, Invasion of the Body: Revolutions in Surgery

(Cambridge, MA: Harvard University Press, 2011), 71–72.

18 Judith Leavitt, Brought to Bed: Childbearing in America 1750 to 1950

(New York and Oxford: Oxford University Press, 1986), 59.

19 Ibid., 183.

20 We are grateful to Jason Glenn for his insights in a review of an early

draft of this chapter.

21 Reiser, Reign of Technology, 68.

22 Thomas Mann, The Magic Mountain, trans. by H. T. Lowe-Porter (1924;

reprint, New York: Vintage Books, 1969), 348–349.

23 Quoted in Joel D. Howell, Technology in the Hospital (Baltimore, MD

and London: The Johns Hopkins University Press, 1995), 108.

24 Joel D. Howell, Technology in the Hospital (Baltimore, MD and London:

The Johns Hopkins University Press, 1995), 69–133.

25 Charles Rosenberg, The Care of Strangers (New York: Basic Books,

1987), 341.

26 Howell, Technology in the Hospital, 15–16.

27 Florence Nightingale, Notes on Hospitals (London: Longman Green,
1863), 175–176.

28 Reiser, Technological Medicine, 79.

29 Quoted in Reiser, Technological Medicine, 54–55. The following

discussion of the iron lung, IPPV, and kidney dialysis is based on Reiser,
Technological Medicine, chs. 3 and 4.

30 “Health, United States, 2010,” National Center for Health Statistics.

Accessed July 15, 2013: http://www.cdc.gov/nchs/data/hus/hus10.pdf, page
366.

31 We thank Jason Glenn for his insights and comments on the issues of
social justice created by modern medical technology.

32 Pope Pius XII, “The Prolongation of Life,” The Pope Speaks 4, no. 4
(November 1958), 393–398.

33 David Clark and Nanette Pazdernik, Biotechnology: Applying the Genetic

Revolution (Boston: Elsevier Academic Press, 2009), ix.

34 Huang Xiaohua, Ivan H. El-Sayed, Wei Qian, and Mostafa A. El-Sayed,

“Cancer Cell Imaging and Photothermal Therapy in the Near-Infrared Region
by Using Gold Nanorods,”Journal of the American Chemical Society 128
(2006): 2115–2120.

35 Adriano Cavalcanti, “Nanorobot Invention and Linux: The Open

Technology Factor – An Open Letter to UNO General Secretary,” CANNXS
Project 1 (2009): 1–4.

36 Ray Kurzweil, The Singularity is Near: When Humans Transcend

Biology (New York: Viking, 2005), 7.
37 Quoted in Stanley Reiser, Technological Medicine, 97.

38 Eric Topol, The Creative Destruction of Medicine (New York: Basic

Books, 2012).

39 Leon Kass, ed., Beyond Therapy: Biotechnology and the Pursuit of

Happiness: A Report of The President’s Council on Bioethics (March 2003),
xvii.

5 The Health of Populations

1 Daniel Defoe, A Journal of the Plague Year (Oxford: Oxford University

Press, 1990), 166.

2 Marcus Aurelius, Meditations IX, trans. Maxwell Staniforth (New York:

Penguin, 1964), 21.

3 See George Rosen, A History of Public Health (New York: MD

Publications, 1958). For an overview of historical approaches to public
health, see Dorothy Porter, The History of Public Health and the Modern
State (Amsterdam: Editions Rodopi, 1994).

4 See Michel Foucault, Madness and Civilization; A History of Insanity in

the Age of Reason (New York: Vintage Books, 1994); Michel Foucault, The
Birth of the Clinic: An Archaeology of Medical Perception, trans. A. M.
Sheridan (New York: Vintage Books, 1973); and Michel Foucault, The
History of Sexuality, Volume One: An Introduction (New York: Vintage,
1990).

5 Dorothy Porter, Health, Civilization and the State: A History of Public

Health from Ancient to Modern Times (Routledge: London and New York,
1999), 4.
6 William McNeill, Plagues and Peoples (New York: Anchor Press, 1976),
33.

7 McNeill, Plagues and Peoples, 51, 62.

8 Hippocrates, “Airs, Waters, Places,” in Hippocratic Writings, trans. J.

Chadwick and W. N. Mann, ed. G. E. R. Lloyd (New York: Penguin, 1978),
44.

9 Guenter Risse, Mending Bodies, Saving Souls: A History of Hospitals

(New York: Oxford University Press, 1999).

10 Ibid., 69.

11 Ibid., 126.

12 Porter, Health, Civilization and the State, 24.

13 Quoted in Roy Porter, The Greatest Benefit to Mankind: A Medical

History of Humanity from Antiquity to the Present (London: HarperCollins,
1997), 124.

14 J. N. Hays, The Burdens of Disease: Epidemics and Human Response in

Western History (New Brunswick, NJ and London: Rutgers University Press,
1998), 44.

15 Frederick Cartwright and Michael Biddiss, Disease and History (Stroud,

UK: Sutton Publications, 2000), 38.

16 Hays, Burdens of Disease, 55.

17 See Gerald Grob, The Deadly Truth: A History of Disease in America

(Cambridge, MA: Harvard University Press, 2004).
18 McNeill, Plagues and Peoples, 2.

19 Hays, The Burdens of Disease, 72.

20 Fred Anderson, Crucible of War: The Seven Years’ War and the Fate of
Empire in British North America, 1754–1766 (New York: Alfred A. Knopf,
2000), 542.

21 Ibid., 809.

22 Elizabeth Fee, “Public Health and the State: The United States,” in The
History of Public Health and the Modern State, ed. Dorothy Porter (Atlanta,
GA: Editions Rodopi, 1994), 226.

23 Porter, Health, Civilization and the State, 83.

24 Ibid., 57.

25 Hays, The Burden of Disease, 137.

26 Porter, Health, Civilization and the State, 113.

27 Thomas Wakley, “Introduction,” The Lancet 2 (1853): 393.

28 Quoted in Hays, The Burdens of Disease, 145. See also Joseph Duffy,
The Sanitarians (Champaign: University of Illinois Press, 1992).

29 Hays, The Burdens of Disease, 146.

30 Quoted in Diane Paul, Controlling Human Heredity 1865 to the Present

(Atlantic Highlands, NJ: Atlantic Highlands Humanities Press, 1995), 3.
31 Quoted in David Bradshaw, “Eugenics: They Should Certainly Be
Killed,” in A Concise Companion to Modernism, ed. by David Bradshaw
(Oxford, UK: Blackwell Publishing, 2003), 39.

32 See Paul Lombardo, Three Generations, No Imbeciles (Baltimore, MD:

Johns Hopkins University Press, 2008).

33 Rebecca Kluchin, Fit to be Tied: Sterilization and Reproductive Rights in

America, 1950–1980 (New Brunswick, NJ: Rutgers University Press, 2009),
17–20.

34 Roy Porter, Madness: A Brief History (Oxford and New York: Oxford
University Press, 2000), 186.

35 Porter, Health, Civilization and the State, 175.

36 Ibid., 197.

37 Paul Starr, Remedy and Reaction: The Peculiar American Struggle Over
Health Care Reform (New Haven, CT: Yale University Press, 2011), 5.

38 Abdel Omran, “The Epidemiologic Transition: A Theory of the

Epidemiology of Population Change.” The Milbank Memorial Fund
Quarterly 49, no. 4 (1971): 509–538.

39 Fee, “Public Health and the State: The United States,” 250.

40 Ibid., 251.

41 American College of Preventive Medicine, accessed June 4, 2012:

www.acpm.org.

42 Paul Farmer, Infections and Inequalities: The Modern Plagues (Berkeley:

University of California Press, 1998), 14.

43 Arno Karlen, Man and Microbes: Diseases and Plagues in History and
Modern Times (New York: Putnam, 1995), 1–13.

44 Ibid., 6.

45 Susan Sontag, Illness as Metaphor (New York: Farrar, Strauss, and

Giroux, 1978).

46 A Human Health Perspective On Climate Change: A Report Outlining

the Research Needs on the Human Health Effects of Climate Change
(Research Triangle Park, NC: Environmental Health Perspectives/National
Institute of Environmental Health Sciences, April 2010). Accessed November
11, 2013: 3. www.niehs.nih.gov/climatereport.

6 Death and Dying

1 “Code of Medical Ethics,” JAMA 7, no. 27 (1886): 712.

2 Frank Kermode, The Sense of an Ending: Studies in the Theory of Fiction

(Oxford and New York: Oxford University Press, 1966), 58.

3 Philippe Ariès, Western Attitudes Toward Death: From the Middle Ages to
the Present (Baltimore, MD: Johns Hopkins University Press, 1974); and
Philippe Ariès, The Hour of Our Death (New York: Alfred E. Knopf, 1981).

4 Many critics have pointed to various shortcomings of Aries’ work,

including its lack of empirical support and reliance on literary sources. For a
full account of responses to Ariès, see Roy Porter, “The Hour of Philippe
Aries,” Mortality 4 (1999): 83–90; and Allan Kellehear, A Social History of
Dying (Cambridge: Cambridge University Press, 2007), 172–176.
5 E. H. Ackerknecht, “Death in the History of Medicine,” Bulletin of the
History of Medicine 42 (1968), 19–23.

6 Quoted in Paul Strathern, A Brief History of Medicine: From Hippocrates

to Gene Therapy (New York: Carroll & Graf Publishers, 2005), 15.

7 Roy Porter, The Greatest Benefit To Mankind: A Medical History of

Humanity From Antiquity to the Present (London: HarperCollins, 1997), 86–
87.

8 Ackerneckt, “Death in the History of Medicine,” 21.

9 Seneca, Letters from a Stoic, trans. by Robin Campell (New York:

Penguin, 1969), 161, 183.

10 Peregrine Horden, “What’s Wrong with Early Medieval Medicine?”

Social History of Medicine 24, no.1 (2009): 1.

11 Ibid., 15.

12 Ariès, The Hour of Our Death, 23.

13 Quoted in Ariès, The Hour of Our Death, 16.

14 John 11:25.

15 Ariès, The Hour of Our Death, 107–110.

16 David Stannard, The Puritan Way of Death (New York: Oxford

University Press, 1977).

17 Quoted in James Farrell, Inventing the American Way of Death, 1830–

1920 (Philadelphia: Temple University Press, 1980), 19.
18 Quoted in Robert B. Baker and Laurence B. McCullough, “Medical
Ethics through the Life Cycle in Europe and the Americas,” in The
Cambridge World History of Medical Ethics, eds. Robert Baker and Laurence
McCullough (Cambridge: Cambridge University Press, 2008), 149.

19 Ibid., 150.

20 Ibid.

21 Ackerknecht, “Death in the History of Medicine,” 22.

22 Roy Porter, “Death and the Doctors in Georgian England,” in Death,

Ritual and Bereavement, ed. Ralph Houlbrooke (London and New York:
Routledge), 88.

23 “Code of Medical Ethics,” 712.

24 Emily Abel, The Inevitable Hour: A History of Caring for Dying Patients
in America (Baltimore, MD: Johns Hopkins University Press, 2013), 25.

25 Ibid., 11.

26 Ibid., 14.

27 Joseph Jacobs, “The Dying of Death,” Public Opinion 27 (August 1899):

241.

28 Porter, Greatest Benefit, 85.

29 Leo Tolstoy, The Death of Ivan Ilych, in The Death of Ivan Ilych and
Other Stories, trans. Aylmer Maude (New York: Penguin Books, 1960), 134–
135.
30 Ibid., 154–155.

31 Geoffrey Gorer, The Pornography of Death, in Death, Grief and

Mourning in Contemporary Britain (Garden City, NY: Doubleday, 1965).

32 Emily K. Abel, “‘In the Last Stages of Irremediable Disease’: American

Hospitals and Dying Patients before World War II,” Bulletin of the History of
Medicine 85 (2011): 32.

33 Quoted in Abel, The Inevitable Hour, 51.

34 Quoted. in ibid., 37.

35 See “Facing Death,” Frontline: PBS Houston, November 10, 2010.

Accessed July 16, 2010: www.pbs.org/wgbh/pages/frontline/facing-death/.

36 Stanley Reiser, Technological Medicine: The Changing World of Doctors

and Patients (Cambridge: Cambridge University Press, 2009), 59–61.

37 See Barney Glaser and Anselm Strauss, Awareness of Dying (Chicago:

Aldine, 1965); and David Sudnow, Passing On: the Social Organization of
Dying (Englewood Cliffs, NJ: Prentice Hall, 1967).

38 Quoted in Abel, The Inevitable Hour, 167.

39 Cicely Saunders, “Hospice,” Mortality 1, no. 3 (1996): 317–322.

40 Elizabeth Kübler-Ross, On Death and Dying (New York: MacMillan,

1969), 5.

41 Ibid., 6.

42 Marie-Aurèlie Bruno, Didier Ledoux and Steven Laureys, “The Dying

Human: A Perspective From Biomedicine,” in The Study of Dying: From
Autonomy to Transformation, ed. Allan Kellehear (New York: Cambridge
University Press, 2009), 60–61.

43 Ibid., 53.

44 Robert Veatch, “Defining and Redefining Life and Death,” in The

Cambridge World History of Medical Ethics, eds. Robert Baker and Laurence
McCullough (Cambridge: Cambridge University Press, 2008), 684–691.

45 Quoted in ibid., 689.

46 Raymond S. Duff and A. G. M. Campbell, “Moral and Ethical Dilemmas

in the Special-Care Nursery,” New England Journal of Medicine 289 (1973):
890–894; and Richard A. McCormick, “To Save or Let Die: The Dilemma of
Modern Medicine,” Journal of the American Medical Association 229
(1974): 172–176.

47 Sharon Kauffman, And a Time to Die: How American Hospitals Shape

the End of Life (Chicago: University of Chicago Press, 2005), 65.

48 How to Die in Oregon (2011). DVD, directed by Peter Richardson

(Clearcut Productions, 2011).

49 James Green, Beyond the Good Death: The Modern Anthropology of

Dying (Philadelphia: Pennsylvania University Press, 2008), 175–183.

Part II Literature, the Arts, and Medicine

1 John Berger, Ways of Seeing (London: Penguin Books, 1972), 7–8.

2 Rudolf Arnheim, Visual Thinking (Berkeley: University of California

Press, 1969).

3 Mary Winkler, “The Visual Arts in Medical Education,” Second Opinion

19, no. 1 (1993): 65. See also Geri Berg, ed. The Visual Arts in Medical
Education (Carbondale: Southern Illinois University Press, 1983).

4 This shared insight was a catalyst for the emergence of literature and
medicine as a significant field within medical humanities in the 1980s and
1990s. For example, see Joanne Trautmann Banks, “The Wonders of
Literature in Medical Education,” Mobius: A Journal for Continuing
Education for Professionals in Health Sciences and Health Policy 2, no. 3
(1982): 23–31; Delese Wear, Martin Kohn, and Susan Stocker, eds.,
Literature and Medicine: A Claim for a Discipline (McLean, VA: Society for
Health and Human Values, 1987); Anne Hudson Jones, “Literature and
Medicine: Traditions and Innovations,” in The Body and the Text:
Comparative Essays in Literature and Medicine, eds. Bruce Clarke and
Wendell Aycock (Lubbock: Texas Tech University Press, 1990); and Rita
Charon, Joanne Trautmann Banks, Julia E. Connelly, Anne Hunsaker
Hawkins, Kathryn Montgomery Hunter, Anne Hudson Jones, Martha
Montello, and Suzanne Poirier, “Literature and Medicine: Contributions to
Clinical Practice,” Annals of Internal Medicine 122, no. 8 (1995): 599–606;
M. Faith McLellan and Anne Hudson Jones, “Why Literature and
Medicine?” Lancet 348 (1996): 109–111.

5 Clifford Geertz, “The Uses of Diversity,” Michigan Quarterly Review

[(XXV) no. 1 (Winter, 1986) 113.]

Reprinted in Clifford Geertz, Available Light: Anthropological Reflections on

Philosophical Topics (Princeton, NJ: Princeton University Press, 2000), 68–
88.

6 Lawrence J. Schneiderman, “Empathy and the Literary Imagination,”

Annals of Internal Medicine 137, no. 7 (2002): 627–629.

7 J. M. Cameron, “The Description of Feeling,” in Nuclear Catholics and

Other Essays (Grand Rapids, MI: William B. Eerdmans Publishing
Company, 1989), 181.

8 Friedrich Nietzsche, The Dawn, in Werke in drei Bänden, vol. 1

(Mὕnchen: Carl Hanser Verlag, 1954), 1016. Author’s translation.

7 Narratives of Illness

1 Quoted by Hannah Arendt, “Isak Dinesen: 1885–1963,” in Men in Dark

Times (New York: Harcourt, Brace and Co., 1968), 97.

2 See Anne Hunsaker Hawkins, Reconstructing Illness: Studies in

Pathography (West Lafayette, IN: Purdue University Press, 1993). Also
pertinent is Oliver Sacks, “Clinical Tales,” Literature and Medicine 5 (1986):
16–23. Note especially: “The delineation of worlds, as they may be altered,
broken or buffeted by disease; and the relation of altered worlds, disease
worlds to our world – this seems to me to lie at the heart of any clinical tale,
to set it apart from (and beyond) mere case history (though, of course, it will
contain a case history), and to establish it as an authentic branch of narrative
or drama” (p. 18).

3 John Gunther, Death Be Not Proud (New York: Pyramid Books, 1949).

4 Lael Tucker Wertenbaker, Death of a Man (Boston: Beacon Press, 1957).

5 Stewart Alsop, Stay of Execution: A Sort of Memoir (Philadelphia: J. P.

Lippincott, 1973).

6 Betty Rollins, Last Wish (New York: Linden Press/Simon & Schuster,
1977).

7 Stephen S. Rosenfeld, The Time of Their Dying (New York: W. W.

Norton, 1977).

8 See Martin Kreiswirth, “Trusting the Tale: The Narrativist Turn in the
Human Sciences,” New Literary History 23, no. 3, (1992): 630: “Narrative
and story have come to displace argument and explanation in a whole range
of philosophic, theoretical, and cross-disciplinary contexts.”

9 Hawkins, Reconstructing Illness, 18.

10 Robert Coles, The Call of Stories: Teaching and the Moral Imagination
(Boston: Houghton Mifflin Company, 1989), 205.

11 Arthur Frank, The Wounded Storyteller: Body, Illness, and Ethics

(Chicago: University of Chicago Press, 1995), passim.

12 Arthur Frank, “Five Dramas of Illness,” Perspectives in Biology and

Medicine 50, no. 3, (2007): 394.

13 Oliver Sacks, A Leg to Stand On (New York: Summit Books/Simon &

Schuster, 1984).

14 Ibid., 219.

15 Ibid., 64.

16 Ibid., 72.

17 Ibid., 119.

18 Ibid., 145.

19 Ibid., 150.
20 William Styron, Darkness Visible: A Memoir of Madness (New York:
Vintage Books, 1990).

21 Lucy Grealy, Autobiography of a Face (New York: Harper Perennial,

1994).

22 Aaron Alterra, The Caregiver: A Life with Alzheimer’s (South Royalton,

VT: Steerforth Press, 1999).

23 William Styron, Darkness Visible, 63.

24 Ibid., 12.

25 Ibid., 13.

26 Ibid., 45.

27 Ibid., 38.

28 Ibid., 50.

29 Ibid., 7–8, 84.

30 Ibid., 64.

31 Ibid., 69.

32 Ibid., 73.

33 Ibid., 68.

34 Ibid., 76.
35 Ibid., 78.

36 Ibid., 56.

37 Ibid., 81.

38 Lucy Grealy, Autobiography of a Face, 13.

39 Ibid., 27.

40 Ibid., 38.

41 Ibid., 43.

42 Ibid., 111–112.

43 Ibid., 219–220.

44 Ibid., 157.

45 Ibid., 223.

46 Ibid., 220.

47 See W. J. T. Mitchell, “Introduction: Pragmatic Theory,” in Against

Theory: Literary Studies and the New Pragmatism, ed. W. J. T. Mitchell
(Chicago: University of Chicago Press, 1985), 7: “Theory is monotheistic, in
love with simplicity, scope, and coherence. It aspires to explain the many in
terms of the one.… Theory places itself at the beginning or the end of thought
providing first principles … and schematizing practice in a general account. It
is unhappy with the middle realm of history, practical conduct, and business
as usual and so tends to seek a final solution, a utopian perspective, which
presents itself as a point of origin.”
48 Aaron Alterra, The Caregiver, 26.

49 Ibid., 49.

50 Ibid., 79.

51 Ibid., 92–93.

52 Ibid., 158.

53 Ibid., 192.

54 See Rita Charon, “Narrative and Medicine,” New England Journal of

Medicine 350, no. 9 (2004): 862; Martha Montello, “Narrative Competence,”
in Stories and Their Limits: Narrative Approaches to Ethics, ed. Hilde
Lindemann Nelson (New York: Routledge, 1997), 185–197; and Rita
Charon, Narrative Medicine: Honoring the Stories of Illness (New York:
Oxford University Press, 2006), especially Part III, “Developing Narrative
Competence.”

8 Aging in Film

1 Sally Chivers, The Silvering Screen (Toronto, ON: University of Toronto

Press, 2011), 5.

2 Thomas R. Cole and Mary G. Winkler, eds., The Oxford Book of Aging
(New York: Oxford University Press, 1994), 3.

3 As Amir Cohen-Shalev and Eshter-Lee Marcus put it, “few filmmakers

have taken up the challenge of a thorough screen study of the phenomenon of
old age, and still fewer social scientists have responded to the demand of an
aging society for a serious treatment of its aged via the communication
venues so central to its cultural identity.” See Amir Cohen-Shalev and Esther-
Lee Marcus, “Golden Years and Silver Screen: Cinematic Representations of
Old Age,” Journal of Aging, Humanities and the Arts 1 (2007): 85.

4 Pam Gravagne, The Becoming of Age: Cinematic Visions of Mind, Body

and Identity in Later Life (Jefferson, NC: MacFarland & Company, 2013).

5 Sally Chivers, The Silvering Screen (Toronto, ON: University of Toronto

Press, 2011), 5.

6 See Heather Addison, “‘Must the Players Keep Young?’ Early

Hollywood’s Cult of Youth,” Cinema Journal 45, no. 4 (2006): 3–25; and
Heather Addison, “Transcending Time: Jean Harlow and Hollywood’s
Narrative of Decline,” Journal of Film and Video 57, no.4 (2005): 32–46.

7 Thomas Cole, The Journey of Life: A Cultural History of Aging in America

(New York: Cambridge University Press, 1992), 232.

8 Addison, “Hollywood’s Cult of Youth,” 6.

9 Addison, “Hollywood’s Narrative of Decline,” 33.

10 S. Harvey, “Coming of Age in Film,” American Film 7, no. 3 (1981): 52–

3.

11 See Robert Butler, “The Life Review: An Interpretation of Reminiscence

in the Aged,” Psychiatry 26 (1963): 65–76; and Erik Erikson, “Reflections on
Dr. Borg’s Life Cycle, Daedalus 105, no. 2 (1976): 1–28.

12 Chivers, The Silvering Screen, 41–2.

13 Quoted in ibid., xii.

14 Robert Yahnke, “Intergeneration and Regeneration: The Meaning of Old
Age in Films and Videos,” in Handbook of the Humanities and Aging, 2nd
ed., eds. Thomas R. Cole, Robert Kastenbaum, and Ruth Ray (New York:
Springer Publishing Company, 2000).

15 Robert Yahnke, “The Experience of Aging in Feature-Length Films: A

Selected and Annotated Filmography,” in A Guide to Humanistic Studies in
Aging, eds. Thomas R. Cole, Ruth E. Ray, and Robert Kastenbaum
(Baltimore, MD: The John Hopkins University Press, 2010).

16 Thomas Cole, “Aging, Home, and Hollywood in the 1980s,” The

Gerontologist 31, no. 3 (1991): 427–30.

17 Yahnke, “Old Age in Films and Videos,” 300–301.

18 See Bradley J. Fisher and Sandra Shapshay, “‘He Just Got Old:’ Aging
and Compassionate Care in Dad,” in Bioethics at the Movies, ed. Sandra
Shapshay (Baltimore, MD: Johns Hopkins University Press, 2009), 205–224.

19 Elaine Showalter, “An ‘Iris’ Stripped of Her Brilliance,’ Chronicle of

Higher Education 48, no. 23 (2002): B18.

20 Thomas Waltz, “Crones, Dirty Old Men, Sexy Seniors: Representations

of the Sexuality of Older Persons,” Journal of Aging and Identity 7, no.2
(2002): 99–112.

21 “Westerns insist on this point,” writes Jane Tompkins, “by emphasizing

the importance of manhood as an ideal. It is not one ideal among many, it is
the ideal, certainly the only one worth dying for. It doesn’t matter whether a
man is a sheriff or an outlaw, a rustler or a rancher, a cattleman or a
sheepherder, a miner or a gambler. What matters is that he be a man.” See
Jane Tompkins, West of Everything: The Inner Life of Westerns (Oxford:
Oxford University Press, 1992), 17–18.
22 Chivers, The Silvering Screen, 102.

23 Ibid., 112.

24 Munny’s comical, bumbling image is further underscored if we contrast

the character with Eastwood himself, whose previous, younger cowboy roles
– A Fistful of Dollars (1964), The Good, the Bad, and the Ugly (1966), and
Pale Rider (1985), among others – epitomize the physically powerful, violent
bad-boy hero.

25 This quotation is from Joel and Ethan Coen’s film No Country for Old
Men.

26 Chivers, The Silvering Screen, xvi.

9 Medicine and Media

1 Quoted in Jospeh Turow, Playing Doctor: Television, Storytelling, and

Medical Power (Ann Arbor: University of Michigan Press, 2010), 362.

2 Ibid.

3 Lester Friedman, ed., Cultural Sutures: Medicine and Media (Durham,

NC: Duke University Press, 2004).

4 Leslie Reagan, Nancy Tomes, and Paula Treichler, eds., Medicine’s

Moving Pictures: Medicine, Health, and Bodies in American Film and
Television (Rochester, NY: University of Rochester, 2007).

5 Sandra Shapshay, ed., Bioethics at the Movies (Baltimore, MD: Johns

Hopkins University Press, 2009).
6 Andrew Holtz, House, M.D. vs. Reality: Fact and Fiction in the Hit
Television Series (New York: Berkley Publishing Group, 2011).

7 Allan Ross and Harlan Gibbs, The Medicine of ER: An Insider’s Guide to
the Medical Science Behind America’s #1 TV Drama (New York:
BasicBooks, 1996).

8 Jason Jacobs, Body Trauma TV: The New Hospital Dramas (London: BFI
Publishing, 2003).

9 Clive Seale, Media and Health (London: Sage Publications, 2002).

10 Kirsten Ostherr, Cinematic Prophylaxis: Globalization and Contagion in

the Discourse of World Health (Durham, NC: Duke University Press, 2005);
Kirsten Ostherr, Medical Visions: Producing the Patient through Film,
Television, and Imaging Technologies (Oxford: Oxford University Press,
2013).

11 See, for example, Timothy Johnson, “Medicine and the Media,” The New
England Journal of Medicine 339 (1998): 87–92.

12 See, for example, Matthew Czarny, Ruth Faden, and Jeremy Sugarman,
“Bioethics and Professionalism in Popular Television Medical Dramas,”
Journal of Medical Ethics 36 (2010): 203–206.

13 See, for example, the December 2008 special issue of The American
Journal of Bioethics on television (Volume 8, Issue 12). Also see Hyunyi
Cho, Kari Wilson, and Jounghwa Choi, “Perceived Realism of Television
Medical Dramas and Perceptions about Physicians,” Journal of Media
Psychology 23 (2011): 141–148; and Brian Quick, “The Effects of Viewing
Grey’s Anatomy on Perceptions of Doctors and Patient Satisfaction,” Journal
of Broadcasting and Electronic Media 53 (2009): 38–55.

14 Seale, Media and Health, 111.

15 Ibid., 113.

16 Matthew Czarny, Ruth Faden, Marie Nolan, Edwin Bodensiek, and

Jeremy Sugarman, “Medical and Nursing Students’ Television Viewing
Habits: Potential Implications for Bioethics,” The American Journal of
Bioethics 8 (2008): 1, emphasis added.

17 Mark Wicclair, “The Pedagogical Value of House, M.D.,” The American

Journal of Bioethics 89 (2008): 16.

18 Jeffrey Spike, “Television Viewing and Ethical Reasoning: Why

Watching Scrubs Does a Better Job than Most Bioethics Classes,” The
American Journal of Bioethics 89 (2008): 11–13.

19 Joseph Turow and Rachel Gans-Boriskin, “From Expert in Action to

Existential Angst,” in Medicine’s Moving Pictures, 263–281.

20 Turow, Playing Doctor, 10.

21 Ibid., 7–8.

22 Ibid., 51–54. This discussion was largely based on Turow’s work.

23 William Regelson, “The Weakening of the Oslerian Tradition,” JAMA

239 (1978): 317–319.

24 Turow, Playing Doctor, 87–109. This discussion was largely based on

Turow’s work.

25 See James Wittebols, Watching M*A*S*H, Watching America: A Social

History of the 1972–1983 Television Series (Jefferson, NC: McFarland and
Co., 1998).
26 Turow, Playing Doctor, 248–271. This discussion was largely based on
Turow’s work.

27 Ibid., 326–328.

28 Roselyn Epps, “Hats Off to Dr. Huxtable,” JAMA 254 (1985): 2957.

29 Leslie Inniss and Joe Feagin, “The Cosby Show: The View from the
Black Middle Class,” Journal of Black Studies 25 (1995): 692–711; Sut
Jhally and Justin Lewis, Enlightened Racism: The Cosby Show, Audiences
and the Myth of the American Dream (Boulder, CO: Westview Press, 1992).

30 On this point, see John Hoberman, Black and Blue: The Origins and
Consequences of Medical Racism (Berkeley: University of California Press,
2012).

31 Jacobs, Body Trauma TV, 25.

32 Ibid., 26.

33 Turow, Playing Doctor, 343.

34 Ibid., 331–358.

35 Amir Hetsroni, “If You Must Be Hospitalized, Television Is Not the

Place,” Communication Research Reports 26 (2009): 311–322.

36 Holtz, House, M.D., 44.

37 See, e.g., Czarny, Faden, and Sugarman, “Bioethics and Professionalism

in Popular Television Medical Dramas.”

38 Elena Strauman and Bethany Goodier, “The Doctor(s) in House,” Journal

of Medical Humanities 32 (2011): 43.

39 Ibid.

40 Ibid, 45.

41 Quoted in Turow, Playing Doctor, 362.

10 Poetry and Moral Imagination

1 Anatole Broyard, Intoxicated by My Illness and Other Writings on Life and

Death (New York: Fawcett Columbine, 1992), 41.

2 Marianne Moore, “Poetry,” in Collected Poems (New York: Macmillan,

1935).

3 Cynthia Ozick, “Forewords, Afterwards,” American Poet: The Journal of

the American Academy of Poets (Summer 1997): 9.

4 W. H. Auden, in The English Auden, ed. Edward Mendelson (New York:

Random House, 1977), 329.

5 W. H. Auden, “A Short Defense of Poetry,” New York Review of Books,

January 30, 1986, 15.

6 Ozick, “Forewords, Afterwards.”

7 I offer these readings in the spirit invoked by Lionel Trilling in explaining

the purpose of the commentaries he provided on works of literature selected
for his anthology, The Experience of Literature: “They have one purpose
only – to make it more likely that the act of reading will be an experience,
having in mind what the word implies of an activity of consciousness and
response … and I have tried to have them say no more than might suggest to
the reader how he could come into a more active connection with what he has
read.” See Lionel Trilling, The Experience of Literature: A Reader with
Commentaries (Garden City, NY: Doubleday & Company, 1967), x and xi.

8 Kenneth Koch, “The Language of Poetry,” New York Review of Books,

May 14, 1998, 47. The same does not apply to objectivist, or formalist, views
of poetry which purge the personal and require mastery of some literary-
critical apparatus.

9 Alan Shapiro, “The Stroke,” The American Scholar 52 no. 3 (Summer

1983): 363–364.

10 James Dickey, “The Scarred Girl,” in The Whole Motion: Collected

Poems, 1945–1992 (Middletown, CT: Wesleyan University Press, 1992). The
rhythm of “The Scarred Girl” is best appreciated when the poem is read
aloud, attending especially to the punctuation and taking care to pause after
each comma and to stop for a breath following the periods.

11 Robert Cooperman, “What They Don’t Know,” The American Poetry

Review 17 no. 2 (March-April 1988): 46.

12 Northrup Frye, The Educated Imagination (Bloomington: Indiana

University Press, 1964), 135.

13 Mary Warnock, Imagination (Berkeley: University of California Press,

1978), 201.

14 Ibid., 196.

15 Stephen Knight, “FROM The Fascinating Room,” in Flowering Limbs

(Newcastle upon Tyne, UK: Bloodaxe Books Ltd., 1993), 21–23.
16 Sharon Olds, “The Learner,” in The Unswept Room (New York: Alfred
A. Knopf, 2002), 97–98.

17 John Berger, And Our Faces, My Heart, Brief as Photos (New York:
Vintage Books, 1984), 97.

11 Doctor-Writers

1 Anatole Broyard, Intoxicated by My Illness and Other Writings on Life and

Death (New York: Fawcett Columbine, 1992), 41.

2 William Carlos Williams, The Doctor Stories, compiled by Robert Coles

(New York: Directions Publishing, 1984), 99.

3 Ibid., 100.

4 Ibid., 101.

5 Ibid.

6 Ibid., 57.

7 Ibid., 58.

8 Ibid., 59–60.

9 Joanne Trautmann, “William Carlos Williams and the Poetry of

Medicine,” Ethics in Science & Medicine 2 (1975): 106.

10 William Carlos Williams, “The Practice,” William Carlos Williams: The

Doctor Stories, compiled by Robert Coles (New York: Directions Publishing,
1984), 123, 126.

11 Richard Selzer, Letter to a Young Doctor (New York: Simon & Schuster,
1996), iii.

12 Richard Selzer, Confessions of a Knife (New York: Simon & Schuster,

1979), 18–19.

13 Richard Selzer, “A Parable” in Recognitions: Doctors and their Stories,

eds. Carol Donley and Martin Kohn, (Kent, OH: Kent State University Press,
2002), 171.

14 Ibid., 172.

15 Ibid., 172–173.

16 Ibid., 173.

17 W. H. Auden, The English Auden: Poems, Essays and Dramatic

Writings, 1927–1939, ed. Edward Mendelsohn (New York: Random House,
1978), 341.

18 David Daiches, “Religion, Poetry, and the ‘Dilemma’ of the Modern

Writer,” Literary Essays (Chicago: University of Chicago Press, 1968).

19 Kate Scannell, Death of the Good Doctor: Lessons from the Heart of the
AIDS Epidemic (San Francisco, CA: Cleis Press, 1999), 10–11.

20 Ibid., 12–13.

21 Danielle Ofri, Incidental Findings: Lessons from My Patients in the Art

of Medicine (Boston: Beacon Press, 2005), 68.
22 Ibid., 70–71.

23 Ibid., 72.

24 Ibid., 73.

25 Ibid., 70.

26 Ibid., 8–9.

27 Pauline Chen, Final Exam: A Surgeon’s Reflections on Mortality (New

York: Alfred A. Knopf, 2007), 6.

28 Ibid., p. 8.

29 Renée C. Fox and Harold I. Lief, “Training for ‘Detached Concern’ in

Medical Students,” in The Psychological Basis of Medical Practice, eds.
Harold I. Lief, et al. (New York: Harper & Row, 1963), 12–35. See also John
L. Coulehan, “Tenderness and Steadiness,” Literature and Medicine 14, no. 2
(1995): 222–236.

30 Chen, Final Exam, 46–47.

31 Ibid., 208.

32 Ibid., 209–210.

33 Ibid., 211.

34 Anatole Broyard, Intoxicated by My Illness, 41.

35 Carl Elliott observes of doctors who become disheartened by their work

that they tend to be those who “expected the practice to carry some deeper
significance. They are the ones who thought medicine was a moral calling.”
See Carl Elliott, “Disillusioned Doctors,” in Lost Virtue: Professional
Character Development in Medical Education, eds. Nuala Kenny and Wayne
Shelton (Amsterdam: Elsevier Ltd., 2006), 97.

12 Studying Medicine

1 Ellen Fox, “Rethinking DoctorThink: Reforming Medical Education by

Nurturing Neglected Goals,” in The Goals of Medicine: The Forgotten Issues
in Health Care Reform, eds. Mark J. Hanson and Daniel Callahan
(Washington, DC: Georgetown University Press, 1999), 196.

2 Abraham Flexner, Medical Education in the United States and Canada: A

Report to the Carnegie Foundation for the Advancement of Teaching,
Bulletin no. 4 (Boston: Updyke, 1910).

3 Leonard D. Eron, “Effect of Medical Education on Medical Students

Attitudes,” Journal of Medical Education 30, no. 10 (1955): 559–556; Renée
C. Fox, “Training for Uncertainty,” in The Student Physician, eds. Robert K.
Merton, George Reader, and Patricia Marshall (Cambridge, MA: Harvard
University Press, 1957), 207–241; Howard S. Becker and Blanche Geer,
“The Fate of Idealism in Medical School,” American Sociological Review 23
(1958): 50–56; Daniel H. Funkenstein, “Medical Students, Medical Schools,
and Society in Three Eras,” in Psychological Aspects of Medical Training,
eds. Robert H. Combs and Clark E. Vincent (Springfield, IL: Charles
Thomas, 1971), 229–281.

4 Kenneth Keniston, “The Medical Student,” Yale Journal of Biology and

Medicine 39, no. 6 (1967): 346–58; Daniel H. Funkenstein, “The Learning
and Personal Development of Medical Students Reconsidered,” The New
Physician 19 (1970): 229–281.
5 Frederic W. Hafferty and Ronald Franks, “The Hidden Curriculum, Ethics
Teaching and the Structure of Medical Education,” Academic Medicine 69
(1994): 861–871; Frederic W. Hafferty, “In Search of a Lost Cord:
Professionalism and Medical Education’s Hidden Curriculum,” in Education
for Professionalism: Creating a Culture of Humanism in Medical Education,
eds. Delese Wear and Janet Bickel (Iowa City: University of Iowa Press,
2000), 11–34; Delese Wear and Mark G. Kuczewski, “Perspective: Medical
Students’ Perceptions of the Poor: What Impact Can Medical Education
Have?” Academic Medicine 83 no. 7 (2008), 639–645.

6 L. Kron, “On Being Poor,” ITIS 4, no 23 (1970): 1. Cited by Jerrold S.

Maxmen in “Medical School as a Radicalizing Experience,” The Pharos 35
(1972): 27.

7 H. Jack Geiger, “The Causes of Dehumanization in Health Care and

Prospects for Humanization,” in Humanizing Health Care, eds. Jan Howard
and Anselm Strauss (New York: John Wiley and Sons, 1975), 16–17.

8 Fitzhugh Mullan, White Coat, Clenched Fist: The Political Education of

American Physician (Ann Arbor: The University of Michigan Press, 2006), x.

9 Charles E. Lewis and Sharon Winer, “Has Idealism Survived?” The New
Physician (January 1976): 25–27.

10 Alvin R. Tarlov, quoted in Jean Evangelauf, “Medical Schools Urged to

Revamp Curricula,” The Chronicle of Higher Education, November 18,
1987, 57. Medical school dean Frank N. Miller Jr. captured the sentiment of
many in a commencement address at the George Washington School of
Medicine: “There is no better preparation than an attentive interest in the
humanities and the arts for meeting with wisdom the many situations
requiring moral judgments which arise in the practice of medicine.” See
Franklin N. Miller Jr., “On Sitting Down to Read ‘King Lear’ Once Again,”
The Pharos 33 no. 1 (January 1970): 7–10.

11 A Rockefeller Foundation study recommended that institutions of higher

education actively experiment with ways of integrating the humanities with
preprofessional and professional studies (see The Humanities in American
Life, Report of the Commission on the Humanities, Berkeley: University of
California Press, 1980). The Council on Medical Education urged medical
schools to encourage applications from undergraduates who have had “a
broad exposure to the humanities as well as the physical sciences … both of
which are necessary for the practice of medicine” [see Future Directions for
Medical Education (American Medical Association, 1982), 6]. And the
Association of American Medical Colleges’ General Professional Education
of the Physician report recommended “that faculties integrate into the
common curriculum materials that will provide students with a working
knowledge of the ethical dimensions and the social context of medicine …
[and] that each medical school campus have at least one full-time humanist to
lead research in these areas and to act as a catalyst and liaison with other
course directors to ensure that humanities materials are integrated into the
curriculum” [see Physicians for the Twenty-First Century, Report of the
Working Group on Personal Qualities, Values, and Attitudes,” Journal of
Medical Education 59, no. 11 (1984): 184–185].

12 Samuel Shem, The House of God (New York: Richard Marek Publishers,
1978). See also Howard Markel, “The House of God 30 Years Later,”
Journal of the American Medical Association 299, no. 2 (2008): 227–229;
Martin Kohn and Carol Donley, eds., Return to The House of God: Medical
Resident Education 1978–2008 (Kent, OH: Kent State University Press,
2008); and Susan Dorr Goold and David T. Stern, “Ethics and
Professionalism: What Does a Resident Need to Learn?” American Journal
of Bioethics 6, no. 4 (2004): 9–17.

13 Jack Coulehan and Peter C. Williams, “Vanquishing Virtue: The Impact

of Medical Education,” Academic Medicine vol. 65, no. 6 (2001): 598–605.

14 Edmund D. Pellegrino, “The Humanities in Medicine: Entering the Post-

Evangelical Era,” in The Humanities and the Profession of Medicine
(Research Triangle Park, NC: National Humanities Center, 1986), 25–43;
Thomas K. McEllhinney and Edmund D. Pellegrino, “The Institute on
Human Values in Medicine: Its Role and Influence in the Conception and
Evolution of Bioethics,” Theoretical Medicine 22, no. 4 (2001): 291–317;
“The Humanities and Medicine: Reports of 41 U.S., Canadian and
International Programs,” eds. Lisa R. Dittrich and Anne L. Farmakidis,
Academic Medicine 78, no. 10 (October 2003). See also Edmund D.
Pellegrino, “Educating the Humanist Physician: An Ancient Ideal
Reconsidered, “Journal of the American Medical Association 227, no. 11
(1974): 1288–1294; Kathryn Montgomery Hunter, “What We Do: The
Humanities and the Interpretation of Medicine,” Theoretical Medicine 8
(1987): 367–378.

15 Maggie Moore-West, Martha Regan-Smith, Allen Dietrich, and Donald

O. Kollisch, “Innovations in Medical Education: Enhancing Humanism
through the Educational Process,” in Educating Competent and Caring
Physicians, eds. Hugh C. Hendrie and Camille Lloyd (Bloomington: Indiana
University Press, 1990), 128–174; Reneé C. Fox, “Training in Caring
Competence,” 199–216.

16 Manish C. Champaneria and Sara Axtell, “Cultural Competence Training

in U.S. Medical Schools,” Journal of the American Medical Association 291,
no. 17 (2004): 2142.

17 Delese Wear, “Professional Development of Medical Students: Problems

and Promises,” Academic Medicine 72 (1997): 1056–1062; Kenneth M.
Ludmerer, “Instilling Professionalism in Medical Education,” Journal of the
American Medical Association 282, no. 9 (1999): 881–882; Judith Andre,
“The Medical Humanities as Contributing to Moral Growth and
Development,” in Practicing the Medical Humanities: Engaging Physicians
and Patients, eds. Ronald A. Carson, Chester R. Burns, and Thomas R. Cole
(Hagerstown, MD: University Publishing Group, 2003), 39–69; Jack
Coulehan, “Today’s Professionalism: Engaging the Mind but Not the Heart,”
Academic Medicine 80, no. 10 (2005): 892–898; Susan Door Goold and
David T. Stern, “Ethics and Professionalism: What Does a Resident Need to
Learn?” The American Journal of Bioethics 6, no. 4 (2006): 9–17; Michael
W. Rabow, Rachel N. Remen, Dean X. Parmelee and Thomas S. Inui,
“Professional Formation: Extending Medicine’s Lineage of Service into the
Next Century,” Academic Medicine 85, no. 2 (2010): 310–317; Nathan
Carlin, Thomas R. Cole, and Henry Strobel, “Guidance from the Humanities
for Professional Formation,” in Oxford Textbook of Spirituality in Health
Care, eds. Mark Cobb, Christina Puchalski, and Bruce Rumbold (New York:
Oxford University Press, 2012), 443–450.

18 “The Human Condition of Health Professionals,” a lecture delivered at

the University of New Hampshire, November 19, 1979 under the auspices of
the James Picker Foundation. See also Diane E. Meier, Anthony L. Back, and
R. Sean Morrison, “The Inner Life of Physicians and Care of the Seriously
Ill,” Journal of the American Medical Association 286, no. 23 (2001): 3007–
3014; Thomas R. Cole and Nathan Carlin, “The Suffering of Physicians,”
The Lancet 374 (2009): 1414–1415.

19 D. A. Christakis, “Characteristics of the Informal Curriculum on

Trainees’ Ethical Choices, Academic Medicine 71 (1996): 621–642; Joyce M
Fried, Michelle Vermillion, Neil H. Parker, and Sebastian Uijtdehaage,
“Eradicating Medical Student Mistreatment: A Longitudinal Study of One
Institution’s Efforts,” Academic Medicine 87, no. 9 (2012): 1191–1198.

20 Melanie M. Watkins, “Melanie’s Story,” in What I Learned in Medical

School, eds. Kevin M. Takakuwe, Nick Rubashkin, and Karen E. Herzig
(Berkeley: University of California Press, 2004), 19–22.

21 Karen C. Kim, “Why Am I in Medical School?” in What I Learned in

Medical School, eds. Kevin M. Takakuwe, Nick Rubashkin, and Karen E.
Herzig (Berkeley: University of California Press, 2004), 75–79.

22 Tista Ghosh, “A Case Presentation,” in What I Learned in Medical

School, eds. Kevin M. Takakuwe, Nick Rubashkin, and Karen E. Herzig
(Berkeley: University of California Press, 2004), 154–160. See also Florence
M. Witte, Terry D. Stratton, and Lois Margaret Nora, “Stories from the Field:
Students’ Descriptions of Gender, Discrimination during Medical School,”
Academic Medicine 81, no. 7 (2006): 648–654.

23 David Hellerstein, “Touching,” in On Doctoring: Stories, Poems, Essays,

eds. Richard Reynolds and John Stone (New York: Simon & Schuster, 2001),
354–357.

24 John Stone, “My Medical School,” in My Medical School, ed. Dannie

Abse (London: Robson Books, n.d.), 193. On modeling caring behavior, see
William T. Branch, “The Ethics of Caring and Medical Education,”
Academic Medicine 75, no. 2, (2000): 127–132.

25 Cortney Davis, “Breathing,” Bellevue Literary Review 5, no. 2 (2005):

182–191.

26 Ibid., 184.

27 Ibid., 185.

28 Ibid., 186.

29 Ibid., 187.

30 Ibid., 188.

31 Ibid., 189.

32 Ibid., 190.

33 Ibid., 191.

34 Ibid., 191.

35 Eric J. Cassell, “Practice Versus Theory in Academic Medicine: The

Conflict Between House Officers and Attending Physicians,” Bulletin of the
New York Academy of Medicine 60, no. 3 (1984): 297–308.
36 Perri Klass, “The Patient Narrative,” in Becoming a Doctor: From
Student to Specialist, Doctor-Writers Share Their Experiences, ed. Lee
Gutkind (New York: W. W. Norton, 2010), 47.

37 Ibid., 46–47.

38 Ibid., 44.

39 Ibid., 45.

40 Suzanne Poirier, “Conclusion,” in Doctors in the Making: Memoirs and

Medical Education (Iowa City: University of Iowa Press, 2009). See also
Jack Coulehan, “Compassionate Solidarity: Suffering, Poetry, and Medicine,
Perspectives in Biology and Medicine 52, no. 4 (2009): 585–603; Neeta Jain,
Dagan Coppock, and Stephanie Brown Clark, eds., Body Language: Poems
from the Medical Training Experience (Rochester, NY: BOA Editions, Ltd.,
2006); and Daniel Ofri, What Doctors Feel: How Emotions Affect the
Practice of Medicine (Boston: Beacon Press, 2013).

41 Kenneth M. Ludmerer, Time to Heal (New York: Oxford University

Press, 1999), ch. 18.

42 Paul Haidet and Howard F. Stein, “The Role of the Student-Teacher

Relationship in the Formation of Physicians,” Journal of General Internal
Medicine 21 (2006): S16–S20; Suzanne Poirier, “Relationships,” Doctors in
the Making: Memoirs and Medical Education (Iowa City: University of Iowa
Press, 2009), ch. 5.

43 Quoted by Sherwin Nuland in “The Uncertain Art: The True Healers,”

American Scholar 68 (1999): 125–128. See David J. Doukas, Laurence B.
McCullough, and Stephen Wear, “Reforming Medical Education in Ethics
and Humanities by Finding Common Ground with Abraham Flexner,”
Academic Medicine 85, no. 2 (2010): 318–323. Also pertinent is Johanna
Shapiro, Jack Coulehan, Delease Wear, and Martha Montello, “Medical
Humanities and Their Discontents: Definitions, Critiques, and Implications,”
Academic Medicine 84, no. 2 (2009): 192–198.

Part III Philosophy and Medicine

1 Edmund Pellegrino, “Apologia for a Medical Truant,” in The Philosophy

of Medicine Reborn: A Pellegrino Reader, eds. H. Tristram Engelhardt Jr.
and Fabrice Jotterand (Notre Dame, IN: University of Notre Dame Press,
2008), xiv.

2 H. Tristram Engelhardt Jr. and Fabrice Jotterand, “An Introduction:

Edmund D. Pellegrino’s Project,” in The Philosophy of Medicine Reborn: A
Pellegrino Reader, eds. H. Tristram Engelhardt Jr. and Fabrice Jotterand
(Notre Dame, IN: University of Notre Dame Press, 2008), 1.

3 Ibid., 2.

13 Ways of Knowing

1 Stephen Toulmin, “The Marginal Relevance of Theory to the Humanities,”

Common Knowledge 2, no. 1 (1993): 79.

2 On “the clinical core of medical work,” see Erik H. Erikson, “The Nature
of Clinical Evidence,” in Evidence and Inference: The Hayden Colloquium
on Scientific Concept and Method, ed. Daniel Lerner (Chicago: The Free
Press, 1959), 73–95.

3 On “intersubjectivity” see Charles Taylor, “Interpretation and the Sciences

of Man,” in Philosophy and the Human Sciences (Cambridge: Cambridge
University Press, 1985), 15–37. This article was originally published in 1971.
4 Stephen Toulmin, Cosmopolis: The Hidden Agenda of Modernity
(Chicago: The Free Press, 1990).

5 For recent critiques of Cartesianism, see Alasdair MacIntyre,

“Epistemological Crises, Dramatic Narrative, and The Philosophy of
Science,” The Monist 60 (1977): 453–472; Richard Rorty, Philosophy and
the Mirror of Nature (Princeton, NJ: Princeton University Press, 1979); and
Charles Taylor, “Overcoming Epistemology,” in Philosophical Arguments
(Cambridge, MA: Harvard University Press, 1995), 1–19.

6 Isaiah Berlin, “A Note on Vico’s Concept of Knowledge,” in Giambattista

Vico: An International Symposium, eds. Giorgio Tagliacozzo and Hayden V.
White (Baltimore, MD: Johns Hopkins University Press, 1969), 375.

7 See Charles Taylor, “Theories of Meaning,” in Language and Human

Agency (Cambridge: Cambridge University Press, 1985), 248–292 (originally
published in 1980); and “The Dialogical Self,” in The Interpretive Turn:
Philosophy, Science, Culture, eds. David R. Hiley, James F. Bohman, and
Richard Shusterman (New York: Cornell University Press, 1991), 304–313.
See also Richard J. Bernstein, Beyond Objectivism and Relativism: Science,
Hermeneutics, and Praxis (Philadelphia: University of Pennsylvania Press,
1983), especially part three.

8 Kathryn Montgomery, How Doctors Think: Clinical Judgment and the

Practice of Medicine (New York: Oxford University Press, 2006), 5–6; see
also ch. 2.

9 Kathryn Montgomery Hunter, Doctors’ Stories: The Narrative Structure of

Medical Knowledge (Princeton, NJ: Princeton University Press, 1991),
passim.

10 Ellen Singer More, “‘Empathy’ Enters the Profession of Medicine,” in

The Empathic Practitioner: Empathy, Gender, and Medicine, eds. Ellen S.
More and Maureen A. Milligan (New Brunswick, NJ: Rutgers University
Press, 1994), 19–39.
11 Isaiah Berlin, The Sense of Reality: Studies of Ideas and their History
(New York: Farrar, Straus and Giroux, 1996), 23–24.

12 Isaiah Berlin, “The Concept of Scientific History,” in The Proper Study

of Mankind (New York: Farrar, Straus and Giroux, 1998), 52.

13 See Paul Ricoeur, “The Model of the Text: Meaningful Action

Considered as a Text,” Social Research 38 (1971): 529–562; also, Clifford
Geertz, “Blurred Genres: The Reconfiguration of Social Thought,” in Local
Knowledge: Further Essays in Interpretive Anthropology (New York: Basic
Books, 1983), 19–35.

14 Terry Pringle, This is the Child (New York: Alfred A. Knopf, 1983).

15 Ibid., 69.

16 Ibid., 77.

17 Ibid., 136.

18 Ibid., 96.

19 Ibid., 136.

20 Ibid., 177.

21 Martin Buber, “What Is Man?” in Between Man and Man (London and
Glasgow: The Fontana Library, 1961). This essay was originally published in
1938.

22 Nancy Streuver, Theory and Practice: Ethical Inquiry in the Renaissance

(Chicago: University of Chicago Press, 1992), 22–23.
23 Richard Weinberg, “Communion,” in On Being a Doctor 2: Voices of
Physicians and Patients, ed. Michael A. LaCombe (Philadelphia: American
College of Physicians, 2000), 96–107.

24 Ibid., 96.

25 Ibid., 97.

26 Ibid.

27 Ibid., 98.

28 Ibid., 100.

14 Goals of Medicine

1 Eric J. Cassell, The Nature of Suffering and the Goals of Medicine (New
York: Oxford University Press, 2004).

2 Robert Martensen, A Life Worth Living: A Doctor’s Reflections on Illness

in a High-Tech Era (New York: Farrar, Straus and Giroux, 2008), 54–55. See
also Arnold Relman, “The New Medical Industrial Complex,” New England
Journal of Medicine 303, no. 17 (1980): 963–970.

3 Martensen, A Life Worth Living, xiii.

4 See Robert M. Veatch, “The Impossibility of a Morality Internal to

Medicine,” Journal of Medicine and Philosophy 21, no. 6 (2001): 621–642.
This issue of the journal is entirely devoted to discussions of essentialist
conceptions of medicine.
5 For example, Edmund D. Pellegrino argues that the proper ends of
medicine are derivable “from the concrete realities of the physician-patient
relationship .… Moreover, medicine exists because humans become sick. It is
an activity conceived to attain the overall end of coping with the individual
and social experience of disordered health. Its end is to heal, help, care and
cure, to prevent illness, and cultivate health .… The ends of medicine are
related to the reasons humans established medicine – that is, as a response to
a universal and common experience of illness.” See Edmund D. Pellegrino,
“The Goals and Ends of Medicine: How Are They to be Defined?” in The
Goals of Medicine: The Forgotten Issues in Health Care Reform, eds. Mark
J. Hanson and Daniel Callahan (Washington, DC: Georgetown University
Press, 1999), 58, 62–63; see also Edmund D. Pellegrino and David C.
Thomasma, A Philosophical Basis of Medical Practice: Toward a Philosophy
and Ethic of the Healing Professions (New York: Oxford University Press,
1981), especially ch. 3. Christopher Boorse critically appraises essentialist
conceptions of clinical medicine in an unpublished paper titled “Goals of
Medicine,” August 2012 (draft only – not for quotation), available at
www.philosophie.unihamburg.de/Schramme/.

6 Hanson and Callahan, eds., The Goals of Medicine, 16–17.

7 See chapters 5 and 15 in Hanson and Callahan, eds., The Goals of

Medicine.

8 See chapter 23 in ibid.

9 Kathleen M. Foley, “The Treatment of Cancer Pain,” in Palliative Care:

Transforming the Care of Serious Illness, eds. Diane E. Meier, Stephen L.
Isaacs, and Robert G. Hughes (San Francisco: Jossey-Bass, 2009), 251–275;
also, Joanne Lynn, Joan Harrold, and Janice Lynn Shuster, “Controlling
Pain,” Handbook for Mortals: Guidance for People Facing Serious Illness,
rev. ed. (New York: Oxford University Press, 2011), 71–84.

10 See Warren Thomas Reich, “History of the Notion of Care,” Historical

Dimensions of an Ethic of Care in Health Care,” and (with Nancy S. Jecker)
“Contemporary Ethics of Care,” Encyclopedia of Bioethics, ed. Stephen G.
Post (New York: Macmillan Reference, 2003), 349–374.

11 Carl Elliott, “The Tyranny of Happiness: Ethics and Cosmetic

Pharmacology,” in Enhancing Human Traits: Ethical and Social
Implications, ed. Erik Parens (Washington, DC: Georgetown University
Press, 1998), 177–188; also, Carl Elliott and Tod Chambers, eds., Prozac as
a Way of Life (Chapel Hill: University of North Carolina Press, 2004).

12 See Lauren Slater, “Dr. Daedalus: A Radical Plastic Surgeon Wants to

Give You Wings,” Harper’s Magazine (July 2001): 57–67.

13 Wendy Doniger, “The Mythology of the Face-Lift,” Social Research 67,

no.1 (2000): 99–125.

14 As a result of aggressive marketing by self-styled “gender experts,”

online and elsewhere, prenatal sex selection has become a multimillion dollar
industry. See Dr. Daniel Potter’s personal website, as well as the websites of
clinics promoting prenatal sex selection, such as in-gender.com,
genderselection.com, gender-selection.com, gender-select.com,
genderselectioncenter.com, among others.

15 See Alisa Von Hagel, “Banking on Infertility,” Hastings Center Report

43, no. 5 (2013): 1–17.

16 Juengst, “What Does Enhancement Mean?” 29–47.

17 Michael J. Sandel, The Case Against Perfection: Ethics in the Age of

Genetic Engineering (Cambridge, MA: Belknap/Harvard University Press,
2007), 83. See also Thomas H. Murray, The Worth of the Child (Berkeley:
University of California, 1996), especially 115–147.

18 Hanson and Callahan, eds., The Goals of Medicine, 29.

19 A significant indicator of how widespread public interest in the Quinlan
case was at the time is David Rothman’s observation about press coverage of
the case: “the only cases more prominent were the Supreme Court decisions
in Brown v. the Board of Education and Roe v. Wade.” See David J.
Rothman, Strangers at the Bedside: A History of How Law and Bioethics
Transformed Medical Decision Making (New York: Basic Books, 1991),
232.

20 United States Senate, 1978. Congressional Hearings.

21 Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University

Press, 1998), 113.

22 Tom L. Beauchamp and James F. Childress, Principles of Biomedical

Ethics (New York: Oxford University Press, 1979); also, see chapter 16 of
this volume.

23 See, for example, David Barnard, “The Promise of Intimacy and the Fear
of Our Own Undoing,” Journal of Palliative Care 11, no. 4 (1995): 22–26;
David H. Smith, ed., Caring Well: Religion, Narrative, and Health Care
Ethics (Louisville, KY: Westminster John Knox Press, 2000); Cynthia B.
Cohen, “Religious, Spiritual, and Ideological Perspectives on Ethics at the
End of Life,” in Ethical Dilemmas at the End of Life, eds. Kenneth J. Doka,
Bruce Jennings, and Charles A. Corr (Washington, DC: Hospice Foundation
of America, 2005), 19–40; Daniel P. Sulmasy, “Spiritual Issues in the Care of
Dying Patients,” Journal of the American Medical Association 96, no. 11
(2006): 1385–1392.

24 Daniel Callahan, The Troubled Dream of Life: Living with Mortality

(New York: Simon & Schuster, 1993).

25 Ibid., 15.

26 Ibid., 126.
27 Paul Ramsey, The Patient as Person (New Haven, CT: Yale University
Press, 1970), 116.

28 Ibid., 133.

29 Ibid., 133.

30 Ibid., 134. Also see Judith Graham, “When the Doctor Disappears,” New
York Times, November 14, 2013:
http://newoldage.blogs.nytimes.com/2013/11/14/when-the-doctor-
disappears/?_r=0.

31 C. Saunders, D. H. Summers, N. Teller, Hospice: The Living Idea

(London: Edward Arnold Publishing, 1981).

32 The dean of the school of nursing at Yale University, Florence Wald, and
her colleagues established the first American hospice, the Connecticut
Hospice Institute, in 1974.

33 See Carol Levine, “Goldilocks and the Three Hospice Patients,” Bioethics
Forum: Diverse Commentary on Issues in Bioethics, Hastings Center,
February 19, 2013.

34 Joan M. Teno and Joanne Lynn, “Putting Advance-Care Planning into

Action,” The Journal of Clinical Ethics 7, no. 3, (1996): 205–206; also
Joanne Lynn, “Serving Patients Who May Die Soon: The Role of Hospice
and Other Services,” Journal of the American Medical Association 285, no. 7
(2001): 925–932.

35 J. Andrew Billings, “What Is Palliative Care?” Journal of Palliative

Medicine 1, no. 1, (1998): 73–81; Diane E. Meier, R. Sean Morrison, and
Christine K. Cassel, “Improving Palliative Care,” Annals of Internal
Medicine 127, no. 3 (1997): 225–230. For a comprehensive overview of the
evolution and current state of palliative care, see, Diane E. Meier, Stephen
Issacs, and Robert Hughes, eds., Palliative Care: Transforming the Care of
Serious Illness (San Francisco: Jossey-Bass, 2009).

36 The SUPPORT Principal Investigators, “A Controlled Trial to Improve

Care for Seriously Ill Hospitalized Patients,” Journal of the American
Medical Association 274, no. 20 (1995): 1511–1598.

37 Marilyn J. Field and Christine J. Cassel, eds., Approaching Death:

Improving Care at the End of Life (Washington, DC: National Academy
Press, 1997).

38 Donald M. Phillips, “JCAHO Pain Management Standards Are

Unveiled,” Journal of the American Medical Association 284, no. 4 (2000):
428–429.

39 Lynn, Harrold and Schuster, eds., Handbook for Mortals; Nancy

Berlinger, Bruce Jennings, and Susan M. Wolf, eds., Hastings Center
Guidelines for Decisions on Life-Sustaining Treatment and Care Near the
End of Life (New York: Oxford University Press, 2013).

40 See www.thirteen.org/onourownterms.

41 See, for example, Ezekiel Emanuel, Linda Emanuel, Steven Weiss, and
Diane Fairclough, “Understanding the Experience of Pain in Terminally Ill
Patients,” The Lancet 357 (2001): 1311–1315, one of a series of eight papers
emanating from the Project on the End of Life commissioned by The
Commonwealth Fund and the Nathan Cummings Foundation.

15 Health and Disease

1 René Descartes, Discourse on the Method, trans. Donald A Cress

(Indianapolis: Hackett Publishing, 1998), 18.
2 Christopher Boorse, “Health as a Theoretical Concept,” in Philosophy of
Science 44 (1977): 542.

3 “Constitution of the of the World Health Organization,” in Concepts of

Health and Disease: Interdisciplinary Perspectives, eds. Arthur L. Caplan, H.
Tristram Engelhardt, Jr., and James J. McCartney (Reading, PA: Addison-
Wesley Publishing Company, 1981), 83.

4 Quoted in David Morris, Illness and Culture in the Postmodern Age

(Berkeley: University of California Press, 1998), 52.

5 “Preamble to the Constitution of the World Health Organization,” in

Concepts of Health and Disease: Interdisciplinary Perspectives, eds. Arthur
Caplan, Tristram Englehardt, Jr., and James McCartney (Reading, PA:
Addison-Wesley, 1981).

6 AAMC, Report (1999), 3.

7 “What is Health? The Ability to Adapt,” The Lancet 373 (2009): 781.

8 Daniel Callahan, The Tyranny of Survival, and Other Pathologies of Life

(New York: Macmillan, 1973).

9 Edmund Pellegrino, “Being Ill and Being Healed: Some Reflections on the
Grounding of Medical Morality,” in The Humanity of the Ill:
Phenomenological Perspectives, ed. Victor Kestenbaum (Knoxville:
University of Tennessee Press), 157–166.

10 See Howard Brody, Stories of Sickness (Oxford: Oxford University Press,

1987); and Eric Cassell, The Healer’s Art (Cambridge, MA: MIT Press,
1976).

11 Eric Cassell, The Nature of Suffering and the Goals of Medicine (New
York: Oxford University Press, 1991).
12 Georges Canguilhem, On the Normal and the Pathological, trans.
Carolyn Fawcett (Boston: D. Reidel Publishing Company, 1978).

13 “What is Health?” 781.

14 Quoted in Jonathan Metzl, “Introduction,” in Against Health: How

Health Became the New Morality, ed. Jonathan Metzl (New York: New York
University Press, 2010), 5.

15 Leon Kass, “Regarding The End of Medicine and the Pursuit of Health,”
in Concepts of Health and Disease: Interdisciplinary Perspectives, eds.
Arthur L. Caplan, H. Tristram Engelhardt, Jr., and James J. McCartney
(Reading, PA: Addison-Wesley Publishing Company, 1981), 4.

16 Metzl, Against Health, 1–2.

17 Ibid., 4.

18 Christopher Boorse, “On the Distinction between Disease and Illness,” in

Concepts of Health and Disease: Interdisciplinary Perspectives, eds. Arthur
L. Caplan, H. Tristram Engelhardt Jr., and James J. McCartney (Reading,
PA: Addison-Wesley Publishing Company, 1981), 550.

19 Christopher Boorse, “A Rebuttal on Health,” in What is Disease? eds.

James M. Humber and Robert F. Almeder (Totowa, NJ: Humana Press,
1997), 1–135.

20 Boorse, “Health as a Theoretical Concept,” 546.

21 Ibid., 559.

22 Boorse, “On the Distinction between Disease and Illness,” 550.

23 See H. Tristram Englehardt, Jr., “The Concepts of Health and Disease,”
in Concepts of Health and Disease: Interdisciplinary Perspectives, eds.
Arthur L. Caplan, H. Tristram Engelhardt, Jr., and James J. McCartney
(Reading, PA: Addison-Wesley Publishing Company, 1981), 31–47; and
Scott Devito, “On the Value-Neutrality of the Concepts of Health and
Disease: Unto the Breach Again,” Journal of Medical Philosophy 25, no. 5
(2000): 539–567.

24 Englehardt, Jr., “Concepts of Disease,” 33.

25 Ibid.

26 Samuel Cartwright, “Report on the Diseases and Physical Peculiarities of

the Negro Race,” New Orleans Medical and Surgical Review 7 (1851): 691–
715.

27 Jonathan Metzl, The Protest Psychosis (Boston: Beacon Press, 2010).

28 British Medical Association, Medicine Betrayed: The Participation of

Doctors in Human Rights Abuses (London: Zed Books, 1992), 65.

29 Stephen Post, The Encyclopedia of Bioethics, 2nd ed. (New York:

MacMillan, 2004), 1079.

30 Quoted in R. E. Kendell, “The Concept of Disease and its Implications

for Psychiatry,” in Concepts of Health and Disease: Interdisciplinary
Perspectives, eds. Arthur L. Caplan, H. Tristram Engelhardt, Jr., and James J.
McCartney (Reading, PA: Addison-Wesley Publishing Company, 1981), 445.

31 Thomas Szasz, The Myth of Mental Illness: Foundations of a Theory of

Personal Conduct (New York: Harper & Row, 1974).

32 Kirsten Weir, “The Roots of Mental Illness,” Monitor on Psychology 43,

no. 6 (June 2012): 30.
33 American Psychiatric Association, Diagnostic and Statistical Manual of
Mental Disorders, 4th ed., text revision (Washington: American Psychiatric
Association, 2000), xxx.

34 Kay Jamison, An Unquiet Mind (New York: A. A. Knopf, 1995), 6.

35 Kay Jamison, Touched with Fire: Manic-Depressive Illness and the

Artistic Temperament (New York: The Free Press, 1993).

36 Fyodor Dostoevsky, The Idiot, trans. Constance Garnett (New York:

Barnes and Noble, 2004), 207–208.

37 Quoted in John Clay, R. D. Laing: A Divided Self (London: Hodder and

Stoughton, 1997).

38 Leon Eisenberg, “Disease and Illness: Distinctions between Professional

and Popular Ideas of Sickness,” Culture, Medicine, and Psychiatry 1 (1977):
11.

39 George L. Engel, “The Need for a New Medical Model: A Challenge for
Biomedicine,” in Health, Disease, and Illness: Concepts in Medicine, eds.
Arthur Leonard Caplan, James J. McCartney, and Dominic A. Sisti
(Washington, DC: Georgetown University Press, 2004), 51.

40 Rita Charon, Narrative Medicine: Honoring the Stories of Illness (New

York: Oxford University Press, 2008).

41 Howard Brody, “‘My Story Is Broken, Can You Help Me Fix It?’
Medical Ethics and the Joint Construction of Narrative,” Literature and
Medicine 13 (1994): 79–92.

16 Moral Philosophy and Bioethics

1 Carl Elliott, A Philosophical Disease: Bioethics, Culture, and Identity
(New York: Routledge, 1999), xxvi.

2 Shana Alexander, “They Decide Who Lives, Who Dies,” LIFE 53 (1962):
102–125.

3 Ibid., 108. The passage is in Alexander’s own words.

4 Ibid., 110.

5 Henry K. Beecher, “Ethics and Clinical Research,” New England Journal

of Medicine 274 (1966): 1354–1360. See also David J. Rothman, Strangers at
the Bedside: A History of How Law and Bioethics Transformed Medical
Decision Making (New York: Basic Books, 1991), 70–84.

6 Rothman, Strangers at the Bedside, 190–203; Raymond S. Duff and A. G.

M. Campbell, “Moral and Ethical Dilemmas in the Special-Care Nursery,
New England Journal of Medicine 289 (1973): 890–894; Richard A.
McCormick, “To Save or Let Die: The Dilemma of Modern Medicine,”
Journal of the American Medical Association 229 (1974): 172–176.

7 James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, 2nd ed.
(New York: The Free Press, 1993).

8 The Belmont Report: Ethical Principles and Guidelines for the Protection
of Human Subjects of Research (Washington, DC: Government Printing
Office, 1979):
http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html.

Subsequent related federal commissions and committees and their

publications are:

President’s Commission for the Study of Ethical Problems in

Medicine and Biomedical and Behavioral Research (1978–1983),
 Defining Death, Splicing Life, The Social and Ethical issues of Genetic
Engineering with Human Beings, Deciding to Forego Life-Sustaining
Treatment, Screening and Counseling for Genetic Conditions, Securing
Access to Health Care, Making Health Care Decisions;
Biomedical Ethical Advisory Committee (1988–1990);
Advisory Committee on Human Radiation Experiments (1994–
1995);
National Bioethics Advisory Commission (1996–2001), Cloning
Human Beings, Ethical Issues in Human Stem Cell Research, Ethics and
Policy Issues in Research involving Human Participants, Research
Involving Persons with Mental Disorders That May Affect Decision-
making Capacity, Research Involving Human Biological Materials:
Ethics Issue and Policy Guidance, Ethical and Policy Issues in
International Research: Clinical Trials in Developing Countries;
President’s Council on Bioethics (2001–2009), Human Cloning and
Human Dignity, Beyond Therapy: Biotechnology and the Pursuit of
Happiness, Being Human: Readings from the President’s Council on
Bioethics, Monitoring Stem Cell Research, Reproduction and
Responsibility: The Regulation of New Biotechnologies, White Paper:
Alternative Sources of Human Pluripotent Stem Cells, Taking Care:
Ethical Caregiving in Our Aging Society, Human Dignity and Bioethics
Essays Commissioned by the President’s Council on Bioethics, The
Changing Moral Focus of Newborn Screening: An Ethical Analysis by
the President’s Council on Bioethics, Controversies in the
Determination of Death: A White Paper by the President’s Council on
Bioethics; and

Presidential Commission for the Study of Bioethical Issues (2010–).

9 Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University

Press, 1998), 104.

10 Brand Blanchard, “The Philosophy of Analysis,” Proceedings of the

British Academy 38 (1952): 39–60; Richard J. Bernstein, “The Concept of
Action: Analytic Philosophy,” in Praxis and Action: Contemporary
Philosophies of Human Activity (Philadelphia: University of Pennsylvania
Press, 1971), 230–304; Alasdair MacIntyre, A Short History of Ethics: A
History of Moral Philosophy from the Homeric Age to the Twentieth Century,
2nd ed. (London: Routledge, 1998); Mary Warnock, Ethics Since 1900
(Mount Jackson, VA: Axios Press, 2007).

11 Richard Rorty, “Philosophy in America Today,” The American Scholar

51, no. 2 (1982): 183–200; Richard Rorty, “Analytic and Conversational
Philosophy,” in Philosophy as Cultural Politics (Cambridge: Cambridge
University Press, 2007), 120–130. Bernard Williams writes: “philosophy
should get rid of scientistic illusions … it should not try to behave like an
extension of the natural sciences … it should think of itself as part of a wider
humanistic enterprise of making sense of ourselves and our activities.” See
Bernard Williams, Philosophy as a Humanistic Discipline (Princeton, NJ:
Princeton University Press, 2006), 197.

12 Hans Jonas, “Technology and Responsibility: Reflections on the New

Tasks of Ethics,” Social Research 40 (1973): 38.

13 Ibid., 31.

14 Ibid., 46.

15 Ibid., 38.

16 Ibid, 50.

17 K. Danner Clouser, “Medical Ethics: Some Uses, Abuses, and

Limitations,” New England Journal of Medicine 293 (1978): 384–387.

18 Daniel Callahan, “Bioethics as a Discipline,” Hastings Center Report 1

(1973): 66–73; regarding the origins of the term “bioethics,” see Warren T.
Reich, “The Word ‘Bioethics’: Its Birth and the Legacies of Those Who
Shaped Its Meaning,” Kennedy Institute of Ethics Journal 4 (1994): 319–336,
and “The Word ‘Bioethics’: The Struggle Over Its Earliest Meanings,”
Kennedy Institute of Ethics Journal 5 (1995): 19–34.

19 Tom L. Beauchamp and James F. Childress, Principles of Biomedical

Ethics (New York: Oxford University Press, 1979).

20 “W. D. Ross’s distinction between prima facie and actual obligations is

basic for our analysis. A prima facie obligation must be fulfilled unless it
conflicts on a particular occasion with an equal or stronger obligation. This
type of obligation is always binding unless a competing moral obligation
overrides or outweighs it in a particular circumstance.… What agents ought
to do is, in the end, determined by what they ought to do all things
considered.” See ibid., vii.

21 Edmund D. Pincoffs had earlier argued that to reduce ethics to rule

responsibility is to overlook elements of character which are central to moral
life. See his “Quandary Ethics” (1971) reprinted in Revisions: Changing
Perspectives in Moral Philosophy, eds. Stanley Hauerwas and Alasdair
MacIntyre (Notre Dame, IN: University of Notre Dame Press, 1983), 92–112;
see also John Ladd, “Legalism and Medical Ethics,” Journal of Medicine and
Philosophy 4 (1979): 70–80; and in a broader context, “Talk of rules [is] a
euphemized form of legalism.” See Pierre Bordieu, Outline of a Theory of
Practice (Cambridge: Cambridge University Press, 1977), 17.

22 Stephen Toulmin, “The Tyranny of Principles,” Hastings Center Report

11, no. 6 (1981): 31–39; Ronald A. Carson, “Interpretive Bioethics,”
Theoretical Medicine 11 (1990): 51–59; Andrew B. Lustig, “The Method of
‘Principlism’: A Critique of the Critique,” Journal of Medicine and
Philosophy 17 (1992), 487–510; James F. Childress, “Principles-Oriented
Bioethics: An Analysis and Assessment from Within,” in A Matter of
Principles? Ferment in U.S. Bioethics, eds. Edmund R. DuBose, Ron Hamel,
and Laurence J. O’Connell (Valley Forge, PA: Trinity Press International,
1994), 72–98; Larry Churchill, “Rejecting Principlism, Affirming Principles:
A Philosopher Reflects on the Ferment in U.S. Bioethics,” in A Matter of
Principles? Ferment in U.S. Bioethics, eds. Edmund R. DuBose, Ron Hamel,
and Laurence J. O’Connell (Valley Forge, PA: Trinity Press International,
1994), 321–331; Richard A. McCormick, “Beyond Principlism Is Not
Enough: A Theologian Reflects on the Real Challenge for U.S. Biomedical
Ethics,” in A Matter of Principles? Ferment in U.S. Bioethics, eds. Edmund
R. DuBose, Ron Hamel, and Laurence J. O’Connell (Valley Forge, PA:
Trinity Press International, 1994), 344–361; Tom L. Beauchamp, “The Role
of Principles in Practical Ethics,” in Philosophical Perspectives in Bioethics,
eds. L. W. Sumner and Joseph Boyle (Toronto: University of Toronto Press,
1996), 79–95; Onora O’Neill, “Practical Principles and Practical Judgments,”
Hastings Center Report 31, no. 4 (2001): 15–23; Leigh Turner, “Zones of
Consensus and Zones of Conflict: Questioning the ‘Common Morality’
Presumption in Bioethics,” Kennedy Institute of Ethics Journal 13, no. 3
(2003), 193–218.

23 Robert M. Veatch, A Theory of Medical Ethics (New York: Basic Books,

1981); Robert M. Veatch, “Revisiting A Theory of Medical Ethics: Main
Themes and Anticipated Changes,” in The Story of Bioethics: From Seminal
Works to Contemporary Exploration, eds. Jennifer K. Walter and Evan P.
Klein (Washington, DC: Georgetown University Press, 2003), 67–89.

24 William F. May, “Code, Covenant, Contract or Philanthropy,” Hastings

Center Report 5, no. 6 (1975): 29–38; William F. May, “The Medical
Covenant: An Ethics of Obligation or Virtue?” in Theological Analyses of the
Clinical Encounter (Boston: Kluwer Academic Publishers, 1994), 29–44.

25 H. Tristram Engelhardt Jr., The Foundations of Bioethics, rev. 2nd ed.

(New York: Oxford University Press, 1995), 40 and 382.

26 H. Tristram Engelhardt Jr., “Bioethics in Pluralist Societies,”

Perspectives in Biology and Medicine 26, no. 1 (1982): 70, 76; see also H.
Tristram Engelhardt, Jr., “The Physician-Patient Relationship in a Secular,
Pluralist Society,” in The Clinical Encounter, ed. Earl E. Shelp (Dordrecht,
Holland: D. Reidel Publishing Company, 1983), 256–266.

27 William F. May, The Patient’s Ordeal, (Bloomington: Indiana University

Press, 1991), 207.
28 Albert R. Jonsen, “Casuistry and Clinical Ethics,” Theoretical Medicine 7
(1986): 65–74; Eric T. Juengst, “Casuistry and the Locus of Certainty in
Ethics,” Medical Humanities Review 3, no. 1 (1989): 19–27; John Arras,
“Getting Down to Cases: The Revival of Casuistry in Bioethics,” Journal of
Medicine and Philosophy 16 (1991): 29–51; James F. Childress, “Ethical
Theories, Principles, and Casuistry in Bioethics: An Interpretation and
Defense of Principlism,” in Religious Methods and Resources in Bioethics,
ed. Paul F. Camenisch (Boston: Kluwer Academic Publishers, 1994), 181–
201; Mark G. Kuczewski, “Casuistry and It Communitarian Critics,”
Kennedy Institute of Ethics Journal 4 (1994): 99–116; Albert R. Jonsen,
“Casuistry: An Alternative or Complement to Principles?” Kennedy Institute
of Ethics Journal 5, no. 3 (1995): 237–251; see also Albert R. Jonsen and
Stephen Toulmin, The Abuse of Casuistry: A History of Moral Reasoning
(Berkeley: University of California Press, 1988); Patricia Beattie Jung, a
review of The Abuse of Casuistry, in Religious Studies Review 17, no. 4
(1991): 298–302; for a “theory of pluralistic casuistry, see Baruch Brody, Life
and Death Decision Making (New York: Oxford University Press, 1988).

29 Sally Gadow, “Aging as Death Rehearsal: The Oppressiveness of

Reason,” The Journal of Clinical Ethics 7, no.1 (1996): 35–40; Susan
Sherwin, “Feminist and Medical Ethics: Two Different Approaches to
Contextual Ethics,” in Feminist Perspectives in Medical Ethics, eds. Helen
Bequaert Holmes and Laura M. Purdy (Bloomington: Indiana University
Press, 1992), 18–31 (originally published in Hypatia 4, no. 2, Summer 1989);
Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care
(Philadelphia: Temple University Press, 1992); Annette C. Baier,
“Alternative Offerings to Asclepius?” Medical Humanities Review 6, no. 1
(1992): 9–19; Margaret Urban Walker, “Keeping Moral Space Open: New
Images of Ethics Consultancy,” Hastings Center Report 13, no. 2 (1993): 33–
40; Sally Gadow, “Whose Body, Whose Story? The Question about Narrative
in Women’s Health Care,” Soundings 73, nos. 3–4 (1994): 295–307; Susan
Sherwin, “Feminism and Bioethics,” in Feminism and Bioethics: Beyond
Reproduction, ed. Susan M. Wolf (New York: Oxford University Press,
1996), 47–66; Rosemarie Tong, “Feminist Approaches to Bioethics,” in
Feminism and Bioethics: Beyond Reproduction, ed. Susan M. Wolf (New
York: Oxford University Press, 1996), 67–94; Annette C. Baier, ”What Do
Women Want in a Moral Theory?” in Moral Prejudices: Essays in Ethics
(Cambridge, MA: Harvard University Press, 1994), 1–17, 313 [originally
published in Nous, 19 (March 1985): 53–63].

30 Anne Hudson Jones, “Literary Value: The Lesson of Medical Ethics,”

Neohelicon 14 (1987): 383–392; Suzanne Poirier and Daniel J. Brauner,
“Ethics and the Daily Language of Medical Discourse,” Hastings Center
Report 18, no. 4 (1988): 5–9; Anne Hudson Jones, “Literature and Medicine:
Illness from the Patient’s Point of View,” in Personal Choices and Public
Commitments, ed. William J. Winslade (Galveston, TX: Institute for the
Medical Humanities, 1988), 1–15; Howard Brody, “‘My Story is Broken:
Can You Help Me Fix It?’ Medical Ethics and the Joint Construction of
Narrative,” Literature and Medicine 3, no. 1 (1994): 79–92; Anne Hudson
Jones, “Reading Patients – Cautions and Concerns,” Literature and Medicine
13 (1994): 190–200; Anne Hudson Jones, “Darren’s Case: Narrative Ethics in
Perri Klass’s Other Women’s Children,” Journal of Medicine and Philosophy
21, no. 3 (1996): 267–286; Anne Hudson Jones, “From Principles to
Reflective Practice of Narrative Ethics, Commentary on Carson,” in
Philosophy of Medicine and Bioethics: A Twenty Year Retrospective and
Critical Appraisal, eds. Ronald A. Carson and Chester R. Burns (Boston:
Kluwer Academic Publishers, 1997), 193–195; Kathryn Montgomery Hunter,
Doctors’ Stories: The Narrative Structure of Medical Knowledge (Princeton,
NJ: Princeton University Press, 1991); Tod Chambers, “From the Ethicist’s
Point of View: The Literary Nature of Ethical Inquiry,” Hastings Center
Report 26, no. 1 (1996): 25–32; Kathryn Montgomery Hunter, “Narrative,
Literature, and the Clinical Exercise of Practical Reason,” Journal of
Medicine and Philosophy 21 (1996): 303–320; Kathryn Montgomery,
“Medical Ethics: Literature, Literary Studies, and the Question of
Interdisciplinarity,” in The Nature and Prospect of Bioethics, eds. Franklin G.
Miller, John C. Fletcher, and James F. Humber (Totowa, NJ: Humana Press,
2003), 141–178; Hilde Lindemann Nelson, ed., Stories and Their Limits:
Narrative Approaches to Bioethics (London: Routledge, 1997); Rita Charon,
“Narrative Contributions to Medical Ethics,” in A Matter of Principles?
Ferment in U.S. Bioethics, eds. Edwin B. DuBose, Ronald P. Hamel, and
Laurence J. O’Connell (Valley Forge, PA: Trinity Press International, 1994),
260–283; Rita Charon and Martha Montello, eds., Stories Matter: The Role of
Narrative in Medical Ethics (London: Routledge, 2002); Ronald A. Carson,
“The Hyphenated Space: Liminality in the Doctor-Patient Relationship,” in A
Matter of Principles? Ferment in U.S. Bioethics, eds. Edwin B. DuBose,
Ronald P. Hamel, and Laurence J. O’Connell (Valley Forge, PA: Trinity
Press International, 1994), 171–182; Rita Charon, Narrative Medicine:
Honoring the Stories of Illness (New York: Oxford University Press, 2006);
Tod Chambers, “Retrodiction and the Histories of Bioethics, Medical
Humanities Review 12, no. 1 (1998): 9–22.

31 Daniel Callahan, “Religion and the Secularization of Bioethics,” Hastings

Center Report 20, no. 4 (1990): 2–4; Courtney S. Campbell, “Religion and
Moral Meaning in Bioethics, Hastings Center Report 20, no. 4 (1990): 4–10;
William F. May, “The Medical Covenant: An Ethics of Obligation or
Virtue?” in Theological Analyses of the Clinical Encounter, eds. Gerald F.
McKinney and J. R. Sande (Boston: Kluwer Academic Publishers, 1994),
29–44; Courtney S. Campbell, “Bioethics and the Spirit of Secularism,” in
Secular Bioethics in Theological Perspective, ed. Earl E. Shelp (Boston:
Kluwer Academic Publishers, 1996), 3–18; Courtney S. Campbell,
“Principlism and Religion: The Law and the Prophets,” in A Matter of
Principles? Ferment in U.S. Bioethics, eds. Edwin R. DuBose, Ronald P.
Hamel, and Laurence J. O’Connell (Valley Forge, PA: Trinity Press
International, 1994), 182–208; Gilbert C. Meilaender, Body, Soul, and
Bioethics (Notre Dame, IN: University of Notre Dame Press, 1995); Carla M.
Messikomer, Renée C. Fox, and Judith P. Swazey, “The Presence and
Influence of Religion in American Bioethics,” Perspectives in Biology and
Medicine 44, no. 4 (2001): 485–508; see also Chapter 22 of this textbook,
“Religion and Bioethics.”

32 George Weisz, ed., Social Science Perspectives on Medical Ethics

(Boston: Kluwer Academic Publishers, 1990); Patricia A. Marshall,
“Anthropology and Bioethics,” Medical Anthropology Quarterly 6 (1992):
49–73; Barry Hoffmaster, “Can Ethnography Save the Life of Bioethics?”
Social Science and Medicine 35 (1992): 1421–1431; Renee C. Fox, “The
Entry of U.S. Bioethics into the 1990s: A Sociological Analysis,” A Matter of
Principles: Ferment in U.S. Bioethics, eds. Edwin R. DuBose, Ron Hamel
and Laurence J. O’Connell (Valley Forge, PA: Trinity Press International,
1994), 21–71; Arthur Kleinman, “Anthropology of Bioethics,” in Writing at
the Margin: Discourse Between Anthropology and Medicine (Berkeley:
University of California Press, 1995); Daniel F. Chambliss, Beyond Caring:
Hospitals, Nurses, and the Social Organization of Ethics (Chicago:
University of Chicago Press, 1996); “Bioethics and Beyond,” Daedalus:
Journal of the American Academy of Arts and Sciences 128, no. 4, (1999):
whole issue; “Quo Vadis? Mapping the Future of Bioethics,” Cambridge
Quarterly of Healthcare Ethics 14, no. 4 (2005): 361–433.

33 Earl E. Shelp, ed., Beneficence and Health Care (Dordrecht, NL: D.

Reidel Publishing Company, 1982); Gilbert Meilaender, “The Virtues: A
Theological Analysis,” in Virtue and Medicine: Explorations in the
Character of Medicine, ed. Earl E. Shelp (Dordrecht, Holland: D. Reidel
Publishing Company, 1985), 151–171; Alasdair MacIntyre “The Nature of
the Virtues,” in After Virtue: A Study in Moral Theory, 2nd ed. (Notre Dame,
IN: University of Notre Dame Press, 1984), 181–203; Edmund D. Pellegrino
and David C. Thomasma, For the Patient’s Good: The Restoration of
Beneficence in Health Care (New York: Oxford University Press, 1988);
Susan S. Phillips and Patricia Benner, eds., The Crisis of Care: Affirming and
Restoring Caring Practices in the Helping Professions (Washington, DC:
Georgetown University Press, 1994); Margaret Olivia Little and Robert M.
Veatch, issue eds., “The Chaos of Care and Care Theory,” Journal of
Medicine and Philosophy 23, no. 2, (1998); Ruth Groenhout, “The Virtue of
Care: Aristotelian Ethics and Contemporary Ethics of Care,” in Feminist
Interpretations of Aristotle, ed. Cynthia A. Freeland (State College:
Pennsylvania State University Press, 1998), 171–200; Judith Andre, Bioethics
as Practice (Chapel Hill: University of North Carolina Press, 2002). See also
Philippa Foot, “Virtues and Vices,” in Virtues and Vices and Other Essays in
Moral Philosophy (Berkeley: University of California Press, 1978), 1–18;
Ellen S. More, “Empathy as a Hermeneutic Practice,” Medical Humanities
Review 17 (1996): 243–254.

34 Stephen Toulmin, “How Medicine Saved the Life of Ethics,”

Perspectives in Biology and Medicine 5, no. 2 (1991): 9–18.

35 In his memoir, In Search of the Good: A Life in Bioethics, Daniel

Callahan laments the evident drift away from broad-gauged inquiry into the
purposes of science and medicine that animated the pioneers of the bioethics
movement.

17 Medicine and Power

1 Michel Foucault, The History of Sexuality, trans., Robert Hurley, vol. 1

(New York: Vintage Books, 1990), 94.

2 Anthony T. Lo Sasso, Michael R. Richards, Chiu-Fang Chou, and Susan E.

Gerber, “The $16,819 Pay Gap for Newly Trained Physicians: The
Unexplained Trend of Men Earning More than Women,” Health Affairs 30
(2011): 193–201.

3 Amartya Sen, “More Than 100 Million Women Are Missing,” The New
York Review of Books, December 20, 1990,
http://www.nybooks.com/articles/archives/1990/dec/20/more-than-100-
million-women-are-missing/?page=1.

4 The Center for Disease Control, “Deaths: Preliminary Data for 2011,”
National Vital Statistics Reports 61/6 (2012): 3.

5 U.S. Census Bureau, “World Population by Age and Sex for 2012,”
International Data Base, http://www.census.gov/cgi-bin/broker.

6 See, for example, Siwan Anderson and Debraj Ray, “Missing Women:
Age and Disease,” The Review of Economic Studies 77 (2010): 1262–1300.

7 Michel Foucault, The Birth of the Clinic: An Archaeology of Medical

Perception, trans. A. M. Sheridan Smith (New York: Pantheon Books, 1973).

8 Michel Foucault, Madness and Civilization: A History of Insanity in the

Age of Reason, trans. Richard Howard (New York: Vintage Books, 1973).
9 Paul Rabinow, “Introduction,” in The Foucault Reader, ed. Paul Rabinow
(New York: Pantheon Books, 1984), 3–29.

10 Ibid., 10.

11 Edward Said, Orientalism (New York: Pantheon Books, 1978).

12 Joan Brumberg, The Body Project: An Intimate History of American Girls

(New York: Vintage Books, 1997).

13 Anne Fausto-Sterling, “The Five Sexes, Revisited,” Sciences 40 (2000):

18–23.

14 Joel Frader, Priscilla Alderson, Adrienne Asch, Cassandra Aspinall, Dena

Davis, Alice Dreger, James Edwards, Ellen Feder, Arthur Frank, Lisa Hedley,
Eva Kittay, Jeffrey Marsh, Paul Miller, Wendy Mouradian, Hilde Nelson, and
Erik Parens, “Health Care Professionals and Intersex Conditions,” JAMA
Pediatrics 158 (2004): 426–428.

15 See the Intersex Society of North America’s website:

http://www.isna.org/faq/what_is_intersex.

16 The summary of this case is taken from Susannah Cornwall, Sex and
Uncertainty in the Body of Christ: Instersex Conditions and Christian
Theology (London: Equinox, 2010), 35–41.

17 Margalit Fox, “Mary Daly, a Leader in Feminist Theology, Dies at 81,”

The New York Times, January 6, 2010, accessed June 25, 2013:
http://www.nytimes.com/2010/01/07/education/07daly.html?hpw.

18 Mary Daly, Gyn/Ecology: The Metaethics of Radical Feminism, with a

New Intergalactic Introduction by the Author (Boston: Beacon Press, 1990).
19 See Loretta Kopelman, “Medicine’s Challenge to Relativism: The Case
of Female Genital Mutilation,” in Philosophy of Medicine and Bioethics, ed.
Ronald Carson and Chester Burns (Dordrecht, NL: Kluwer Academic
Publishers, 1997), 221–237.

20 Daly, Gyn/Ecology, 224.

21 Ibid.

22 Ibid.

23 Ibid., 244.

24 Ibid.

25 H. Gilbert Welch, “Screening Mammography – A Long Run for a Short

Slide?” NEJM 363 (2010): 1276–1278.

26 See, for example, Harrison Pope Jr., Katharine Phillips, and Roberto
Olivardia, The Adonis Complex: The Secret Crisis of Male Body Obsession
(New York: The Free Press, 2000).

27 Daly, Gyn/Ecology, 233.

28 See, for example, Sabina Vaught and Angelina Castagno, “‘I don’t think
I’m a racist’: Critical Race Theory, Teacher Attitudes, and Structural
Racism,” Race Ethnicity and Education 11 (2008): 95–113.

29 U.S. Census Bureau, “Statistical Abstract of the United States: 2012,”

131st Edition, Table 695: 455, Table 698: 457, Table 711: 465. Washington,
DC, 2011, http://www.census.gov/compendia/statab/.

30 Quoted in Harriet Washington, Medical Apartheid: The Dark History of

Medical Experimentation on Black Americans from Colonial Times to the
Present (New York: Anchor Books, 2006), 347.

31 James Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York:
Free Press, 1981).

32 Eileen Welsome, The Plutonium Files: America’s Secret Medical

Experiments in the Cold War (New York: Dial Press, 1999).

33 Todd Savitt, Medicine and Slavery: The Diseases of Health Care of

Blacks in Antebellum Virginia (Urbana: University of Illinois Press, 1978).

34 Allen Hornblum, Acers of Skin: Human Experiments at Holmesburg

Prison (New York: Routledge, 1998).

35 Susan Reverby, Examining Tuskegee: The Infamous Syphilis Study and

Its Legacy (Chapel Hill: University of North Carolina Press, 2009).

36 John Hoberman, Black and Blue: The Origins and Consequences of

Medical Racism (Berkeley: University of California Press, 2012).

37 Ezekiel Emanuel, “Unequal Treatment,” The New York Times, February

18, 2007: http://www.nytimes.com/2007/02/18/books/review/Emanuel.t.html.

38 Allan Brandt, “Racism and Research: The Case of the Tuskegee Syphilis
Study,” in Ethical and Regulatory Aspects of Clinical Research: Readings
and Commentary, ed. Ezekiel Emanuel, Robert Crouch, John Arras, Jonathan
Moreno, and Christine Grady (Baltimore, MD: The Johns Hopkins University
Press, 2003), 20–21.

39 Ibid., 20.

40 Washington, Medical Apartheid, 157–185.

41 Brandt, “Racism and Research,” 23.

42 On this point, see Kelly Brown Douglas, Sexuality and the Black Church:
A Womanist Perspective (Maryknoll, NY: Orbis Books, 1999).

43 Washington, Medical Apartheid, 352–353.

44 See, for example, Emily Largent, David Wendler, Ezekiel Emanuel, and
Franklin Miller, “Is Emergency Research without Initial Consent Justified?”
Archives of Internal Medicine 170 (2010): 668–674.

45 S. Kay Toombs, The Meaning of Illness: A Phenomenological Account of

the Different Perspectives of Physician and Patient (Dordrecht, NL: Kluwer
Academic Publishers, 1992).

46 Havi Carel, Illness: The Cry of the Flesh (Stocksfield, UK: Acumen,
2008).

47 Fredrik Svenaeus, The Hermeneutics of Medicine and the

Phenomenology of Health: Steps Toward a Philosophy of Medical Practice
(Dordrecht, NL: Kluwer Academic Publishers, 2000).

18 Just Health Care

1 Rashi Fein, “What’s Wrong with the Language of Medicine,” New

England Journal of Medicine 306, no. 14 (1982): 864.

2 “Health Programme for the USA,” The Lancet 253, no. 6557 (1949): 747–
748.

3 Paul Starr, Remedy and Reaction: The Peculiar American Struggle over
Health Care Reform (New Haven, CT: Yale University Press, 2011), 37–38.
4 Ibid., 39.

5 Among private organizations opposing the idea, the American Medical

Association stands out. After Truman’s surprise victory in the 1949
presidential contest, “the AMA thought Armageddon had come. It assessed
each of its members an additional $25 just to resist health insurance and hired
Whitaker and Baxter [a public relations firm] to mount a public campaign
that cost $1.5 million in 1949, at that time the most expensive lobbying effort
in American history.” See Paul Starr, The Social Transformation of American
Medicine: The Rise of a Sovereign Profession and the Making of a Vast
Industry (New York: Basic Books, 1982), 284–285.

6 Ibid., 394.

7 Richard Nixon, “Statement on the Signing of the Health Maintenance

Organization Act of 1973,” December 29, 1973.

8 Starr, Remedy and Reaction, 63.

9 Starr, Social Transformation, 419.

10 Starr, Remedy and Reaction, 89. For a concise and accessible discussion
of the theoretical underpinnings of the Clinton health plan, see Paul Starr,
The Logic of Health Care Reform, rev. ed. (New York: Penguin Books,
1994).

11 Starr, Remedy and Reaction, 100.

12 What would reveal itself in retrospect as the one bright spot in Clinton’s
reform efforts was passage in 1997 of bipartisan legislation sponsored by
Senators Edward Kennedy and Orrin Hatch establishing the State Children’s
Health Insurance Program (S-CHIP, later, simply CHIP) that would later be
reauthorized and expanded by Congress and signed into law by President
Obama in 2009, following two vetoes by President George W. Bush.
13 Starr, Remedy and Reaction, 122–12.

14 Stephen M. Davidson, A New Era in U.S. Health Care: Critical Next

Steps Under the Affordable Care Act (Stanford, CA: Stanford University
Press, 2013).

15 For evidence of serious quality problems, see State of Health Care

Quality 2011, National Committee for Health Care Quality, Washington,
D.C., 2011.

16 David J. Rothman, “A Century of Failure: Health Care Reform in

America,” Journal of Health Politics, Policy and Law 18, no. 2 (1993): 273–
274.

17 Deborah Stone, The Samaritan’s Dilemma: Should Government Help

Your Neighbor? (New York: Nation Books, 2008), 28.

18 Michael J. Sandel, What Money Can’t Buy: The Moral Limits of Markets
(New York: Farrar, Straus and Giroux, 2012), 6.

19 Ibid., 10–12.

20 Benjamin R. Barber, “Imperial Emporium,” Raritan: A Quarterly Review

26, no. 3 (2007): 44–45. For an assessment of market influence on health care
systems in both developed and developing countries, see Daniel Callahan and
Angela A. Wasunna, Medicine and the Market: Equity and Choice
(Baltimore, MD: Johns Hopkins University Press, 2006).

21 This idea is developed by Charles Taylor in Philosophical Arguments

(Cambridge, MA: Harvard University Press, 1995), 127–145.

22 Michael Walzer, Spheres of Justice: A Defense of Pluralism and Equality

(New York: Basic Books, 1983), 75. Also pertinent are Michael Walzer’s
book, What It Means to Be an American (New York: Marsilio Publishing
Corp., 1992), a collection of thoughtful essays on citizenship in the American
vein; and, on the concept of distributive justice, Michael Walzer, “Justice
Here and Now,” in Justice and Equality Here and Now, ed. Frank S. Lucash
(New York: Cornell University Press, 1986), 136–150. For an insightful
essay on the notion of needs, see Michael Ignatieff, The Needs of Strangers:
An Essay on Privacy, Solidarity, and the Politics of Being Human (New
York: Viking Penguin, 1985).

23 Howard H. Hiatt, “Protecting the Medical Commons: Who Is

Responsible?” New England Journal of Medicine 293, no. 5 (1975): 235–
241.

24 President’s Commission for the Study of Ethical Problems in Medicine

and Biomedical and Behavioral Research, Securing Access to Health Care:
The Ethical Implications of Differences in the Availability of Health Services
(Washington, D.C., 1983), 4. See also Richard Smith, Howard Hiatt, and
Donald Berwick, “A Shared Statement of Ethical Principles for Those Who
Shape and Give Health Care: A Working Draft from the Tavistock Group,”
Annals of Internal Medicine 130 (1999): 143–147.

25 For a concise overview of theoretically grounded arguments for a right to

health care, see Allen Buchanan, “Justice: A Philosophical Overview,” in
Justice and Health Care, ed. Earl E. Shelp (Dordrecht: D. Reidel, 1981); a
Roman Catholic perspective is discussed by B. Andrew Lustig in “The
Common Good in ‘Secular Society,’” Journal of Medicine and Philosophy 18
(1993): 569–583; on health equity and the social determinants of health,
consult Norman Daniels, Just Health: Meeting Health Needs Fairly
(Cambridge: Cambridge University Press, 2008); and Gopal Sreenivasan,
“Health Care and Equality of Opportunity,” with a commentary by Norman
Daniels, Hastings Center Report 37, no. 2 (2007): 21–31 and 3, respectively.
In a previous book, Just Health Care, Norman Daniels extended John
Rawls’s influential theory of justice to health care. See John Rawls, Justice
as Fairness (Cambridge, MA: Harvard University Press, 1971).

26 See David Hume, A Treatise of Human Nature (1740), ed. L. A. Selby-

Bigge and P. H. Nidditch (Oxford: Clarendon Press, 1978); and Annette
Baier, A Progress of Human Sentiments: Reflections on Hume’s Treatise
(Cambridge, MA: Harvard University Press, 1991).

27 Larry R. Churchill, Self-interest and Universal Health Care: Why Well-

Insured Americans Should Support Coverage for Everyone (Cambridge, MA:
Harvard University Press, 1994), 51.

28 See Adam Smith, The Theory of Moral Sentiments (1759), eds., A. L.

Macfie and D. D. Raphael (Indianapolis, IN: Liberty Press, 1982); Charles L.
Griswold, Jr., Adam Smith and the Virtues of the Enlightenment (Cambridge:
Cambridge University Press, 1999); and D. D. Raphael, The Impartial
Spectator: Adam Smith’s Moral Philosophy (New York: Oxford University
Press, 2007).

29 See Larry R. Churchill, Rationing Health Care in America: Perceptions

and Principles of Justice (Notre Dame, IN: Notre Dame University Press,
1987), especially ch. 4, “Principles of Justice: Rights and Needs,” 70–103.

30 Churchill, Self-Interest and Universal Health Care, 15.

Part IV Religion and Medicine

1 Stephen Pattison, “Absent Friends in Medical Humanities,” Medical

Humanities 33 (2007): 65–66.

2 See, e.g., Bonnie Miller-McLemore, “Thinking Theologically about

Modern Medicine,” Journal of Religion and Health 30 (1991): 287–298.
Also see Nathan Carlin, “Bioethics and Pastoral Concern: Some Possible
New Directions in Pastoral Theology,” Pastoral Psychology 62 (2013): 129–
138.

3 Daniel Callahan, “Religion and the Secularization of Bioethics,” The

Hastings Center Report 20 (1990): 2–4.

4 See, for example, Mark Cobb, Christinia Pulchaliski, and Bruce Rumbold,
eds., The Oxford Textbook of Spirituality in Healthcare (Oxford: Oxford
University Press, 2012).

5 Larry Churchill, “The Amoral Character of Our Attitudes about Death:

Some Implications,” Journal of Religion and Health 17 (1978): 169–176.
Also see Larry Churchill, “The Human Experience of Dying: The Moral
Primacy of Stories over Stages,” Soundings 62 (1979): 24–37.

6 Leigh Turner, “Bioethics in Pluralistic Societies,” Medicine, Health Care

and Philosophy 7 (2004): 201–208.

7 Courtney Campbell, “Religion and Moral Meanings in Bioethics,” The

Hastings Center Report, 20 (1990): 4–10.

8 Gilbert Meilaender, “On Removing Food and Water: Against the Stream,”
The Hastings Center Report 14 (1984): 11–13.

9 Laurie Zoloth, “Yearning for the Long Lost Home: The Lemba and the
Jewish Narrative of Genetic Return,” Developing World Bioethics 3 (2003):
127–132.

10 B. Andrew Lustig, “Suffering, Sovereignty, and the Purposes of God:

Christian Convictions and Medical Killing,” Christian Bioethics 1 (1995):
249–255.

11 Daniel Sulmasy, “A Biopsychosocial-Spiritual Model for the Care of

Patients at the End of Life,” The Gerontologist 42 (2002): 24–33.

12 Paul Ramsey, The Patient as Person: Explorations in Medical Ethics

(New Haven, CT: Yale University Press, 1970).
13 Richard McCormick, “Theology and Bioethics,” in On Moral Medicine:
Theological Perspectives in Medical Ethics, 2nd ed., eds. Stephen Lammers
and Allen Verhey (Grand Rapids, MI: William B. Eerdmans Publishing
Company), 63–71.

14 William May, “The Virtues in a Professional Setting,” Soundings 67

(1984): 245–266.

15 David Smith, Partnership with the Dying: Where Medicine and Ministry
Should Meet (New York: Rowman and Littlefield Publishers, Inc., 2005).

16 Albert Jonsen, “Beating Up Bioethics,” The Hastings Center Report 31

(2001): 40–45.

17 Verlyn Barker, Health and Human Values: A Ministry of Theological

Inquiry and Moral Discourse (United Ministries in Education, 1987).

18 Thomas McElhinney and Edmund Pellegrino, “The Institute on Human

Values in Medicine: Its Role and Influence in the Conception and Evolution
of Bioethics,” Theoretical Medicine 22 (2001): 291–317.

19 Ronald Carson, “Focusing on the Human Scene: Thoughts on

Problematic Theology,” in Notes from a Narrow Ridge: Religion and
Bioethics, eds. Dena Davis and Laurie Zoloth (Hagerstown, MD: University
Publishing Group, 1999), 50.

20 Consider the following essay: Tod Chambers, “The Virtue of Incongruity

in the Medical Humanities,” The Journal of Medical Humanities 30 (2009):
151–154.

19 World Religions for Medical Humanities

1 David Smith, “Introduction,” in Caring Well: Religion, Narrative, and
Health Care Ethics, ed. David Smith (Louisville, KY: Westminster John
Knox Press, 2000), 13.

2 Daniel Sulmasy, The Rebirth of the Clinic: An Introduction to Spirituality

in Health Care (Washington, DC: Georgetown University Press, 2006), 238.

3 See, for example, Nancy Waxler-Morrison, Joan Anderson, Elizabeth

Richardson, and Natalie Cambers, eds., Cross-Cultural Caring: A Handbook
for Health Professionals, 2nd ed. (Vancouver, BC: UBC Press, 2005); Larry
Purnell, Guide to Culturally Competent Health Care, 2nd ed. (Philadelphia:
F. A. Davis Company, 2009); Rachel Spector, Cultural Diversity in Health
and Illness, 7th ed. (Upper Saddle River, NJ: Pearson/Prentice Hall, 2009).

4 Mark Furlong and James Wight, “Promoting ‘Critical Awareness’ and

Critiquing ‘Cultural Competence,’: Towards Disrupting Received
Professional Knowledges,” Australian Social Work 64 (2011): 38–54.

5 For related issues in clinical ethics, see Jeffrey Spike, “When Ethics
Consultation and Courts Collide: A Case of Compelled Treatment of a
Mature Minor,” Narrative Inquiry in Bioethics 1 (2011): 123–131.

6 See John Hoberman, Black and Blue: The Origins and Consequences of
Medical Racism (Berkeley: University of California Press, 2012), 198–233.

7 Arthur Kleinman and Peter Benson, “Anthropology in the Clinic: The

Problem of Cultural Competency and How to Fix It,” PLoS Medicine 3
(2006): e294: doi:10.1371/journal.pmed.0030294.

8 See this blog by a medical student: Marianne DiNapoli, “When a Patient

Just Won’t Listen to You,” timesunion.com, August 4, 2011:
http://blog.timesunion.com/mdtobe/when-a-patient-just-wont-listen-to-
you/1470/.
9 Patricia Marshall, “‘Cultural Competence’ and Informed Consent in
International Health Research,” Cambridge Quarterly of Health Care Ethics
17 (2008), 207.

10 Clifford Geertz, “Religion as a Cultural System,” in The Interpretation of

Cultures: Selected Essays (New York: Basic Books, 1973), 89.

11 Clifford Geertz, “Thick Description: Toward an Interpretive Theory of

Culture,” in The Interpretation of Cultures: Selected Essays (New York:
Basic Books, 1973), 9.

12 Arthur Kleinman, Writing at the Margins: Discourse between

Anthropology and Medicine (Berkeley: University of California Press, 1997),
8.

13 Harold Koenig, Spiritualty and Patient Care: Why, How, When, and
What, 2nd ed. (Philadelphia: Templeton Foundation Press, 2007), 15–36.

14 Christina Puchalski and Anna Romer, “Taking a Spiritual History Allows

Clinicians to Understand Patients More Fully,” Journal of Palliative
Medicine 3 (2000): 129–137.

15 On the definitional problem of religion and on defining the study of

religion, see Diana Eck, “Dialogue and Method: Reconstructing the Study of
Religion,” in A Magic Still Dwells: Comparative Religion in the Postmodern
Age, eds. Kimberley Patton and Benjamin Ray (Berkeley: University of
California Press, 2000), 131–149. Also see Willi Braun and Russell
McCutcheon, eds., Guide to the Study of Religion (London: Cassell, 2000).

16 Harold Koenig, Faith and Mental Health: Religious Resources for

Healing (Philadelphia: Templeton Foundation Press, 2005), 44.

17 See Kenneth Pargament, The Psychology of Religion and Coping:

Theory, Research, Practice (New York: The Guilford Press, 1997), 21–33.
18 See Gavin Flood, An Introduction to Hinduism (Cambridge: Cambridge
University Press, 2004).

19 Manoj Shah and Siroj Sorajjakool, “Hinduism,” in World Religions for

Health Care Professionals, eds. Siroj Sorajjakool, Mark Carr, and Julius
Nam (New York: Routledge, 2010), 39.

20 For these basic facts on Hinduism and more, see Huston Smith, The
Illustrated World’s Religions: A Guide to Our Wisdom Traditions (New
York: HarperSanFrancisco, 1994), 17–57.

21 Manoj Shah and Siroj Sorajjakool, “Hinduism,” 40–45.

22 Ibid., 40.

23 Prakash Desai, “Indian Religion and the Ayurvedic Tradtion,” in Oxford

Textbook of Spirituality in Health Care, eds. Mark Cobb, Christina Puchalski,
and Bruce Rumbold (Oxford: Oxford University Press, 2012), 37.

24 Sudhir Kakar, Shamans, Mystics, Doctors: A Psychological Inquiry into

India and Its Healing Traditions (Chicago: University of Chicago Press,
1982), 219.

25 See Desai, “Indian Religion and the Ayurvedic Tradtion,” 40; as well as
Manoj Shah and Siroj Sorajjakool, “Hinduism,” 41–43.

26 Manoj Shah and Siroj Sorajjakool, “Hinduism,” 41.

27 Ibid., 42.

28 Ibid., 44–45.

29 Koenig, Spiritualty and Patient Care, 215–218.

30 Purnell, Guide to Culturally Competent Health Care, 198–199.

31 For these basic facts on Buddhism and more, see Huston Smith, The
Illustrated World’s Religions, 58–97.

32 Kathleen Gregory, “Buddhism: Perspectives for the Contemporary

World,” in Oxford Textbook of Spirituality in Health Care, eds. Mark Cobb,
Christina Puchalski, and Bruce Rumbold (Oxford: Oxford University Press,
2012), 11.

33 For more on the four noble truths, see Peter Harvey, An Introduction to
Buddhism: Teachings, History and Practices (Cambridge: Cambridge
University Press, 1990), 47–72.

34 Siroj Sorajjakool and Supaporn Naewbood, “Buddhism,” in World

Religions for Health Care Professionals, eds., Siroj Sorajjakool, Mark Carr,
and Julius Nam (New York: Routledge, 2010), 55.

35 Ibid.

36 Harvey, An Introduction to Buddhism, 202.

37 Sorajjakool and Naewbood, “Buddhism,” 58.

38 Ibid., 55–60.

39 Koenig, Spiritualty and Patient Care, 219.

40 For an introduction to Judaism, see Nicholas de Lange, An Introduction

to Judaism (Cambridge: Cambridge University Press, 2000).

41 Douglas Kohn, “Judaism,” in World Religions for Health Care

Professionals, eds. Siroj Sorajjakool, Mark Carr, and Julius Nam (New York:
Routledge, 2010), 114.

42 Ibid., 123.

43 Ibid., 120–128.

44 Ibid.,120.

45 Dawn Smith et al., “Male Circumcision in the United States for the
Prevention of HIV Infection and Other Adverse Health Outcomes: Report
from a CDC Consultation,” Public Health Reports 125 (2010): 72–82.

46 Kohn, “Judaism,” 120–128.

47 Koenig, Spiritualty and Patient Care, 206–210.

48 Dan Cohn-Sherbok, “Judaism,” in Oxford Textbook of Spirituality in

Health Care, eds. Mark Cobb, Christina Puchalski, and Bruce Rumbold
(Oxford: Oxford University Press, 2012), 67.

49 For these basic facts on Christianity and more, see Huston Smith, The
Illustrated World’s Religions, 204–229.

50 For more on Christian history, see Alister McGrath, Christian History:

An Introduction (Malden, MA: Wiley-Blackwell, 2013).

51 Alister McGrath, “Christianity,” in Oxford Textbook of Spirituality in

Health Care, eds. Mark Cobb, Christina Puchalski, and Bruce Rumbold
(Oxford: Oxford University Press, 2012), 26.

52 David Larson, “Christianity,” in World Religions for Health Care

Professionals, eds. Siroj Sorajjakool, Mark Carr, and Julius Nam (New York:
Routledge, 2010), 137–144.
53 Consider the cases of Karen Ann Quinlan and Terri Schiavo; see Gregory
Pence, Classic Cases in Medical Ethics: Accounts of the Cases that Have
Shaped and Define Medical Ethics (Boston: McGraw-Hill, 2008).

54 Timothy Quill, Caring for Patients at the End of Life: Facing an

Uncertain Future Together (Oxford: Oxford University Press, 2001), 165–
174.

55 David Larson, “Christianity,” 139–140. Also see Robert Gagnon, The

Bible and Homosexual Practice: Texts and Hermeneutics (Nashville, TN:
Abingdon Press, 2001).

56 David Larson, “Christianity,” 140.

57 See Donald Capps and Nathan Carlin, Living in Limbo: Life in the Midst
of Uncertainty (Eugene, OR: Cascade Books, 2010).

58 Koenig, Spiritualty and Patient Care, 189–206.

59 For an introduction to Islam, see David Waines, An Introduction to Islam

(Cambridge: Cambridge University Press, 1995).

60 For a brief overview of Islam, see Huston Smith, The Illustrated World’s
Religions, 144–177.

61 Ibid., 160–163.

62 Aasim Padela, “Islamic Medical Ethics: A Primer,” Bioethics 21 (2007):

169–178.

63 Hamid Mavani, “Islam,” in World Religions for Health Care

Professionals, eds. Siroj Sorajjakool, Mark Carr, and Julius Nam (New York:
Routledge, 2010), 103.
64 See Peter Brown, The Body and Society: Men, Women, and Sexual
Renunciation in Early Christianity (New York: Columbia University Press,
1988).

65 Mavani, “Islam,” 106.

66 Ibid., 104–110.

67 Ibid., 110.

68 Koenig, Spiritualty and Patient Care, 210–214.

69 Abdulaziz Sachedina, “Islam,” in Oxford Textbook of Spirituality in

Health Care, eds. Mark Cobb, Christina Puchalski, and Bruce Rumbold
(Oxford: Oxford University Press, 2012), 62.

70 Quoted in Joan Anderson, Sheryl Reimer Kirkham, Nancy Waxler-

Morrison, Carol Herbert, Maureen Murphy, and Elizabeth Richardson,
“Conclusion,” in Cross-Cultural Caring: A Handbook for Health
Professionals, 2nd ed., Nancy Waxler-Morrison, Joan Anderson, Elizabeth
Richardson, and Natalie Cambers, eds. (Vancouver: UBC Press, 2005), 343.

71 Ibid., 343–344.

72 Christina Puchalski and Anna Romer, “Taking a Spiritual History.”

73 Eric Cassell, The Nature of Suffering and the Goals of Medicine, 2nd ed.
(Oxford: Oxford University Press, 2204), xii.

74 Nancy Waxler-Morrison and Joan Anderson, “Introduction: The Need for

Culturally Sensitive Health Care,” in Cross-Cultural Caring: A Handbook for
Health Professionals, 2nd ed., eds. Nancy Waxler-Morrison, Joan Anderson,
Elizabeth Richardson, and Natalie Cambers (Vancouver: UBC Press, 2005),
1.

20 Religion and Health

1 William James, The Varieties of Religious Experience (New York: Simon

& Schuster, 1997), 194–195.

2 Ibid., 109.

3 David M. Wulff, Psychology of Religion: Classic and Contemporary, 2nd

ed. (New York: John Wiley and Sons, 1997), 205–206.

4 Harold G. Koenig, Spirituality in Patient Care: Why, How, When, and

What, 2nd ed. (Philadelphia: Templeton Foundation Press, 2007), back cover.
Our emphasis.

5 Robert Park, “Fraud in Science,” Social Research 75 (2008): 1149. Also

see Herbert Benson, et al., “Study of Therapeutic Effects of Intercessory
Prayer (STEP) in Cardiac Bypass Patients: A Multicenter Randomized Trial
of Uncertainty and Certainty of Receiving Intercessory Prayer,” American
Heart Journal 151 (2006): 934–942.

6 See, for example, Harold G. Koenig, Michael E. McCullough, and David

B. Larson, eds., Handbook of Religion and Health (New York: Oxford
University Press, 2001). Also see Harold G. Koenig, Dana King, and Verna
Carson, eds., Handbook of Religion and Health, 2nd ed. (New York: Oxford
University Press, 2012).

7 Hisham Abu-Raiya and Kenneth Pargament, “On the Links between

Religion and Health: What Has the Empirical Research Taught Us?” in The
Oxford Textbook of Spirituality in Healthcare, eds. Mark Cobb, Christina
Puchalski, and Bruce Rumbold (Oxford: Oxford University Press, 2012),
335–337.

8 William B. Parsons, “Psychology of Religion,” in The Encyclopedia of

Religion, ed. Lindsay Jones, 2nd ed. (New York: Macmillan, 2005).

9 Ralph W. Hood Jr., et al., The Psychology of Religion: An Empirical

Approach, 2nd ed. (New York: The Guilford Press, 1996), vii. The field of
religion and health can also be seen as growing out of epidemiology. Unlike
psychology of religion, epidemiology of religion has not been recognized as a
field in its own right. Indeed, the term “epidemiology of religion” was not
coined until the 1980s. See Jeffrey S. Levin and Harold Y. Vanderpool, “Is
Frequent Religious Attendance Really Conducive to Better Health? Toward
an Epidemiology of Religion,” Social Science & Medicine 24 (1987): 589–
600. Also, an important essay in establishing epidemiology of religion was
published in 1987 by Jeffrey Levin and Preston Schiller. They note some of
the growing interest in the potential associations between religion and health
but point out that, at the time of writing, “next to nothing has been
accomplished in terms of the refinement of concepts or measures” [see
Jeffrey S. Levin and Preston L. Schiller, “Is There a Religious Factor in
Health?” Journal of Religion and Health 26 (1987): 10]. They also note that a
synthesis of findings had not yet been compiled. And so in their article they
review theoretical and methodological issues and empirical findings in more
than 200 research studies on the association between religion and health,
covering such topics as cardiovascular disease, hypertension and stroke, and
various types of cancer.

10 George C. Anderson, “Editorial,” Journal of Religion and Health 1

(1961): 10.

11 Jeffrey S. Levin, “Foreword,” in Handbook of Religion and Health, eds.

Harold G. Koenig, Michael E. McCullough, and David B. Larson (New
York: Oxford University Press, 2001), vii.

12 Larry Dossey, “Foreword,” in God, Faith, and Health: Exploring the

Spirituality-Healing Connection, Jeffrey Levin (New York: John Wiley and
Sons, 2001), vii.

13 Jeffrey Levin, God, Faith, and Health: Exploring the Spirituality-Healing

Connection (New York: John Wiley and Sons, 2001), 1–2.

14 Ibid., 7.

15 Ibid., 3, 23–29.

16 Koenig, Spirituality in Patient Care, 55.

17 Daniel E. Hall, Keith G. Meador, and Harold G. Koenig, “Measuring

Religiousness in Health Research: Review and Critique,” Journal of Religion
and Health 47 (2008): 134–163.

18 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 141. The authors reference an example of a study that tried to
control for social connections: William J. Strawbridge, et al., “Frequent
Attendance at Religious Services and Mortality Over 28 Years,” American
Journal of Public Health 87 (1997): 957–961.

19 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 141. The authors reference Levin and Vanderpool, “Is Frequent
Religious Attendance Really Conducive to Better Health?”

20 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 140. The authors reference Alvan R. Feinstein, “Appraising the
Success of Caring,” in The Lost Art of Caring: A Challenge to Health
Professionals, Families, Communities, and Society, eds. Leighton E. Cluff
and Robert H. Binstock (Baltimore, MD: Johns Hopkins University Press,
2001), 201–218.

21 Robert C. Fuller, Spiritual, But Not Religious: Understanding

Unchurched America (New York: Oxford University Press, 2001).
22 Hall, Meador, and Koenig, “Measuring Religiousness in Health
Research,” 142.

23 Gordon W. Allport, The Nature of Prejudice (Cambridge, MA: Addison-

Wesley Publishing, 1954).

24 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 144.

25 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 143. The authors reference Lee A. Kirkpatrick and Ralph W.
Hood, Jr., “Intrinsic-Extrinsic Religious Orientation: The Boon or Bane of
Contemporary Psychology of Religion,” Journal for the Scientific Study of
Religion 29 (1990): 442–462; and Lee A. Kirkpatrick and Ralph W. Hood,
Jr., “Rub-A-Dub-dub: Who’s in the Tub? Reply to Masters,” Journal for the
Scientific Study of Religion 30 (1991): 318–321.

26 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 145. The authors reference Thomas G. Plante and Marcus T.
Boccaccini, “Reliability and Validity of the Santa Clara Strength of Religious
Faith Questionnaire,” Pastoral Psychology 45 (1997): 429–437; and Thomas
G. Plante and Marcus T. Boccaccini, “The Santa Clara Strength of Religious
Faith Questionnaire,” Pastoral Psychology 45 (1997) 375–387.

27 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 146. The authors reference Harold G. Koenig, George R.
Parkerson Jr., and Keith G. Meador, “Religion Index for Psychiatric
Research,” American Journal of Psychiatry 154 (1997): 885–886.

28 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 146. The authors reference Fetzer/NIA Working Group,
Supplemental Appendix to the Multidimensional Measurement of
Religiousness/Spirituality for Use in Health Research (Kalamazoo, MI: John
E. Fetzer Institute, 1999); and Ellen L. Idler, et al., “Measuring Multiple
Dimensions of Religion and Spirituality for Health Research: Conceptual
Background and Findings from the 1998 General Social Survey,” Research
on Aging 25 (2003): 327–265.

29 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 146. The authors reference Jimmie C. Holland, et al., “A Brief
Spiritual Beliefs Inventory for Use in Quality of Life Research in Life-
Threatening Illness,” Psycho-Oncology 7 (1998): 460–469.

30 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 150. The authors reference Kenneth I. Pargament, et al., “Patterns
of Positive and Negative Religious Coping with Major Life Stressors,”
Journal for the Scientific Study of Religion 37 (1998): 710–724. Also see
Kenneth Pargament, The Psychology of Religion and Coping (New York:
The Guilford Press, 1997).

31 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 148.

32 C. Daniel Batson, “Religion as Prosocial: Agent or Double-Agent?”

Journal for the Scientific Psychosomatik, Medizinische Psychologie 52
(1976): 306–313.

33 James W. Fowler, Stages of Faith (San Francisco: Harper and Row,

1981).

34 See Ralph W. Hood, Jr., “The Construction and Preliminary Validation of

a Measure of Reported Mystical Experience,” Journal for the Scientific Study
of Religion 14 (1975): 29–41.

35 Hall, Meador, and Koenig, “Measuring Religiousness in Health

Research,” 153. The authors reference Lynn G. Underwood and Jeanne A.
Teresi, “The Daily Spiritual Experience Scale: Development, Theoretical
Description, Reliability, Exploratory Factor Analysis, and Preliminary
Construct Validity Using Health-Related Data,” Annals of Behavioral
Medicine 24 (2002): 22–23.

36 For these various critiques, see Larry Dossey, “Foreword,” viii.

37 Daniel Sulmasy, The Rebirth of the Clinic: An Introduction to Spirituality

in Health Care (Washington, DC: Georgetown University Press, 2006), 115–
120. Also see Joel Shuman and Keith Meador, Heal Thyself: Spirituality,
Medicine, and the Distortion of Christianity (Oxford: Oxford University
Press, 2003).

38 See Richard Sloan, et al., “Religion, Spirituality, and Medicine,” The

Lancet 353 (1999): 664–667; Richard Sloan, Blind Faith: The Unholy
Alliance of Religion and Medicine (New York: St. Martin’s Press, 2006).

39 See Harold Koenig, et al., “Religion, Spirituality, and Medicine: A

Rebuttal to Skeptics,” International Journal of Psychiatry in Medicine 29
(1999): 123–131; Harold Koenig, “Commentary: Why Do Research on
Spirituality and Health, and What Do the Results Mean?” Journal of Religion
and Health 51 (2012): 460–467.

40 See Harold Koenig, “Religion, Spirituality, and Medicine: Research

Findings and Implications for Clinical Practice,” Southern Medical Journal
97 (2004): 1194–1200.

21 Religion and Reality

1 William Blake, William Blake: Selected Poetry, ed. W. H. Stevenson

(London: Penguin, 1988), 73.

2 Nancy Kehoe, Wrestling with Our Inner Angels: Faith, Mental Illness, and
the Journey to Wholeness (San Francisco: Jossey-Bass, 2009), xvii–xviii.
3 Ibid., xvi.

4 One striking study involved putting three men who believed they were
Jesus in a room together with the hope that these men could see through their
delusion. See Milton Rokeach, The Three Christs of Ypsilanti: A
Psychological Study (New York: Knopf, 1964).

5 Kehoe, Wrestling with Our Inner Angels, xix.

6 Some have called such an approach “biopsychosocial-spiritual.” See

Daniel Sulmasy, “A Biopsychosocial-Spiritual Model for the Care of Patients
at the End of Life,” The Gerontologist 42 (2002): 24–33.

7 See, e.g., Kenneth Pargament, Spiritually Integrated Psychotherapy:

Understanding and Addressing the Sacred (New York: Guilford Press, 2007).

8 See Bernard Spilka, “Psychology of Religion: Empirical Approaches,” in

Religion and Psychology: Mapping the Terrain, eds. Diane E. Jonte-Pace and
William B. Parson (New York: Routledge, 2001), 30.

9 Sigmund Freud, “A Religious Experience,” in The Standard Edition of the

Complete Psychological Works of Sigmund Freud, ed. and trans. James
Strachey, vol. 21 (London: Vintage, 2001), 167–172 (first published 1928).
All quotations in this section are from this essay. Also see Nathan Carlin, “A
Religious Experience: A Psychological Interpretation of Kevin Kelly’s
Conversion to Christianity,” Pastoral Psychology 62 (2013): 587–605. In this
article, I provide a similar summary of Freud’s essay.

10 Sigmund Freud, The Future of an Illusion, in The Standard Edition of the

Complete Psychological Works of Sigmund Freud, ed. and trans. James
Strachey, vol. 21 (London: Vintage, 2001), 1–56 (first published 1927).

11 Andrew Sullivan, Love Undetectable: Notes on Friendship, Sex, and

Survival (New York: Vintage, 1999), 25–32. The material and quotations
from this section come from these pages.

12 Fred Frohock, Lives of the Psychics: The Shared Worlds of Science and
Mysticism (Chicago: University of Chicago Press, 2000), 145.

13 Ibid., 146–148.

14 Frederic Myers, Human Personality and Its Survival of Bodily Death

(London: Longmans, 1903).

15 Sam Parnia, D. G. Waller, R. Yeates, and P. Fenwick, “A Qualitative and

Quantitative Study of the Incidence, Features and Aetiology of Near Death
Experiences in Cardiac Arrest Survivors,” Resuscitation 48 (2001): 149–156.

16 David Derbyshire, “Scientists to Uncover the Truth of Out-of-Body

Experiences,” Daily Mail, September 19, 2008, accessed on April 2, 2013,
http://www.dailymail.co.uk/sciencetech/article-1057506/Scientists-uncover-
truth-body-experiences.html.

17 Rachel Stevenson, “Postcards from Heaven: Scientists to Study Near-

Death Experiences,” The Guardian, News Blog, September 18, 2008,
accessed April 2, 2013,
http://www.guardian.co.uk/news/blog/2008/sep/18/research.

18 William Styron, Darkness Visible: A Memoir of Madness (New York:

Vintage, 1992). Unless otherwise noted, the quotations in this section come
from the final section of the book (see pages 81–83).

19 Ibid., 1.

20 See, for example, Robert Segal, “In Defense of Reductionism,” Journal

of the American Academy of Religion 51 (1983): 97–124.
21 On this point, see William Parsons, The Enigma of the Oceanic Feeling:
Revisioning the Psychoanalytic Theory of Mysticism (New York: Oxford
University Press, 1999).

22 Rudolf Otto, The Idea of the Holy, trans. John Harvey (New York:
Oxford University Press, 1923).

23 Styron, Darkness Visible, 7.

24 See Steven Miles, “A Challenge to Licensing Boards: The Stigma of

Mental Illness,” JAMA 280 (1998): 865; also see Kay Jamison, An Unquiet
Mind: A Memoir of Moods and Madness (New York: Vintage, 1996).

25 Clifford Geertz, Interpretation of Cultures (New York: Basic Books,

1973).

26 See David Roe and Larry Davidson, “Self and Narrative in

Schizophrenia: Time to Author a New Story,” Medical Humanities 31
(2005): 89–94. Also see Albert Rothenberg, “Creativity, Self Creation, and
the Treatment of Mental Illness,” Medical Humanities 32 (2006): 14–19.

27 Paul Crawford and Charley Baker, “Literature and Madness: Fiction for
Students and Professionals,” Journal of Medical Humanities 30 (2009): 237–
251.

28 Paula Gardner, “Distorted Packaging: Marketing Depression as Illness,

Drugs as Cure,” Journal of Medical Humanities 24 (2003): 105–130.

29 Michel Foucault, Madness and Civilization: A History of Insanity in the

Age of Reason, trans. Richard Howard (New York: Pantheon Books, 1965).

30 For example, see Richard Tithecott, Of Men and Monsters: Jeffrey

Dahmer and the Construction of the Serial Killer (Madison: University of
Wisconsin Press, 1997) for a Foucauldian perspective on the construction of
the serial killer and the construction of mental illness.

31 Geoff Hamilton, “Mythos and Mental Illness,” Journal of Medical

Humanities 29 (2008): 231–242.

32 See, for example, Rosemary Radford Ruether, Many Forms of Madness:

A Family’s Struggle with Mental Illness and the Mental Health System
(Minneapolis: Fortress, 2010); Nick Flynn, Another Bullshit Night in Suck
City (New York: W. W. Norton, 2005); Susanna Kaysen, Girl, Interrupted
(New York: Vintage, 1994).

33 Anne Hawkins, “Pathography: Patient Narratives of Illness,” Western

Journal of Medicine 171 (1999): 127–129; Anne Jones, “Literature and
Medicine: Narratives of Mental Illness,” The Lancet 350 (1997): 359–361.

34 Jonathan Metzl, The Protest Psychosis: How Schizophrenia became a

Black Disease (Boston: Beacon Press, 2009).

22 Religion and Bioethics

1 Laurie Zoloth, “Faith and Reasoning(s): Bioethics, Religion, and Prophetic

Necessity,” in Notes from a Narrow Ridge: Religion and Bioethics, eds. Dena
Davis and Laurie Zoloth (Hagerstown, MD: University Publishing Group,
1999), 247.

2 Albert Jonsen, “A History of Religion and Bioethics,” in Handbook of

Bioethics and Religion, ed. David Guinn (Oxford: Oxford University Press,
2006), 23.

3 See http://www.asbh.org/about/history/index.html. Also see Jonsen, “A

History of Religion and Bioethics,” 32.
4 Albert Jonsen, The Birth of Bioethics (New York: Oxford University Press,
2003).

5 Albert Jonsen and Stephen Toulmin, The Abuse of Casuistry: A History of

Moral Reasoning (Berkeley: University of California Press, 1988).

6 Jonsen, “A History of Religion and Bioethics,” 23–36.

7 Ibid., 25.

8 Ibid., 27.

9 Ibid.

10 Joseph Fletcher, Morals and Medicine (Princeton, NJ: Princeton

University Press, 1954).

11 Joseph Fletcher, Situation Ethics: The New Morality (Philadelphia:

Westminster Press, 1966).

12 Paul Ramsey, Basic Christian Ethics (New York: Scribner, 1950).

13 Jonsen, “A History of Religion and Bioethics,” 28.

14 Paul Ramsey, The Patient as Person: Explorations in Medical Ethics

(New Haven, CT: Yale University Press, 1970).

15 Jonsen, “A History of Religion and Bioethics,” 29.

16 Ibid., 30–32.

17 Daniel Callahan, “Religion and the Secularization of Bioethics,” The

Hastings Center Report 20 (1990): 2–4.

18 Jonsen, “A History of Religion and Bioethics,” 33.

19 Immanuel Jacobovits, Jewish Medical Ethics: A Comparative and

Historical Study of the Jewish Religious Attitude to Medicine and Its Practice
(New York: Philosophical Library, 1959).

20 J. David Bleich, Judaism and Healing: Halakhic Perspectives (New

York: Ktav Publishing House, 1981).

21 Baruch Brody, Life and Death Decision Making (New York: Oxford
University Press, 1988).

22 Jonsen, “A History of Religion and Bioethics,” 32–33.

23 John Evans, “The Tension Between Progressive Bioethics and Religion,”

in Progress in Bioethics: Sciences, Policy, and Politics, eds. Jonathan
Moreno and Sam Berger (Cambridge, MA: MIT Press, 2010), 119–141.

24 Tom Beauchamp and James Childress, Principles of Biomedical Ethics,

7th ed. (New York: Oxford University Press, 2013).

25 James Gustafson, quoted in John Evans, “The Tension between

Progressive Bioethics and Religion,” 123.

26 Kevin Wildes, “Religion in Bioethics: A Rebirth,” Christian Bioethics 8

(2002): 163–174.

27 It will become more difficult as ASBH develops and refines credentialing

standards for clinical ethics.

28 James Gustafson, The Contributions of Theology to Medical Ethics

(Milwaukee, WI: Marquette University Press, 2006).

29 Ibid., 16.

30 Ibid., 18–19, 22.

31 Ibid., 93–94.

32 Ibid., p. 95.

33 Paul Ramsey, “On (Only) Caring for the Dying,” in The Essential Paul
Ramsey: A Collection, eds. William Werpehowski and Stephen Crocco (New
Haven, CT: Yale University Press, 1994), 195–222.

34 Ibid., 222.

35 Bernard Lo, Resolving Ethical Dilemmas, 4th ed. (Philadelphia: Wolters

Kluwer, 2009), 119–128.

36 Paul Ramsey, “The Indignity of ‘Death with Dignity,’” in The Essential

Paul Ramsey: A Collection, eds. William Werpehowski and Stephen Crocco
(New Haven, CT: Yale University Press, 1994), 223–246.

37 Joseph Fletcher, “Four Indicators of Humanhood – The Enquiry

Matures,” in On Moral Medicine: Theological Perspectives in Medical
Ethics, 2nd ed., eds. Stephen Lammers and Allen Verhey (Grand Rapids, MI:
William B. Eerdmans Publishing Company, 1998), 377.

38 The National Commission for the Protection of Human Subjects of

Biomedical and Behavioral Research, “The Belmont Report,” Department of
Health, Education, and Welfare, April 18, 1979,
http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html.
39 R. Gillon, “Ethics Needs Principles – Four Can Encompass the Rest –
and Respect for Autonomy Should Be ‘First among Equals,’” Journal of
Medical Ethics 29 (2003): 307–31.

40 Karen Lebacqz, “Philosophy, Theology, and the Claims of Justice,” in

Handbook of Bioethics and Religion, ed. David Guinn (Oxford: Oxford
University Press, 2006), 253–263.

41 See Nathan Carlin, Thomas Cole, and Henry Strobel, “Guidance from the
Humanities for Professional Formation,” in Oxford Textbook of Spirituality in
Healthcare, eds. Mark Cobb, Christina Puchalski, and Bruce Rumbold
(Oxford: Oxford University Press, 2012), 443–450.

42 Lebacqz, “Philosophy, Theology, and the Claims of Justice,” 257.

43 Ibid., 260.

44 William May, “Code and Covenant or Philanthropy and Contract?” in On

Moral Medicine: Theological Perspectives in Medical Ethics, 2nd ed., eds.
Stephen Lammers and Allen Verhey (Grand Rapids, MI: William B.
Eerdmans Publishing Company, 1998), 121–137.

45 Ibid., 128.

46 H. Tristram Engelhardt Jr., The Foundations of Bioethics, 2nd ed. (New

York: Oxford University Press, 1996).

47 H. Tristram Engelhardt Jr., “Bioethics in Pluralistic Societies,”

Perspectives in Biology and Medicine 26 (1982): 64–78.

48 Ibid., 66.

49 Ibid., 70.
50 Ibid., 66.

51 Bernard Lo, Resolving Ethical Dilemmas, 5–6, 182–189. Also see Jeffrey
Spike, Thomas Cole, and Richard Buday, The Brewsters: An Interactive
Adventure in Ethics for the Health Professions (Houston: Archimage, Inc.,
2012), 161–162.

52 Engelhardt, Jr., “Bioethics in Pluralistic Societies,” 76–77.

53 In contrast to Engelhardt’s position, Laurence McCullough and Frank

Chervenak offer a beneficence-based clinical ethics in Ethics in Obstetrics
and Gynecology. Their model, while perhaps positivistic, offers one way that
bioethics can offer content-full recommendations for specific circumstances.
See Laurence McCullough and Frank Chervenak, Ethics in Obstetrics and
Gynecology (New York: Oxford University Press, 1994).

54 Daniel Callahan, “Religion and the Secularization of Bioethics,” 2.

55 Courtney Campbell, “Bioethics and the Spirit of Secularism,” in Secular

Bioethics in Theological Perspective, ed. Earl Shelp (Dordrecht, NL: Kluwer
Academic Publishers, 1996), 4.

56 One of the authors of this textbook (Nathan Carlin) organized a

conference on “Social Justice and the Health Professions,” held at the
University of Texas Health Science Center at Houston in 2011, and the
papers from this conference became a special issue of Pastoral Psychology.
In the special issue, Carlin outlined a vision for how pastoral theologians can
contribute to bioethics, with the key point being that pastoral theologians
ought to focus on both macro and micro issues in bioethics by building on
established areas of intersections between bioethics and theology (e.g.,
justice), by drawing on the traditional resources of pastoral theology (e.g.,
psychology), and by following new directions in the field (e.g., by employing
social scientific disciplines beyond psychology). See Nathan Carlin,
“Bioethics and Pastoral Concern: Some Possible New Direction in Pastoral
Theology,” Pastoral Psychology 62 (2013): 129–138. Also, for a concrete
example of how pastoral theology can contribute to bioethics, see the
discussion of pastoral theologian Robert Dykstra in Chapter 23. Some
material noted above is taken in a slightly revised form from this article. Also
see David Smith, ed., Caring Well: Religion, Narrative, and Health Care
Ethics (Louisville, KY: Westminster John Knox Press, 2000).

57 David Guinn, ed., Handbook of Bioethics and Religion (Oxford: Oxford

University Press, 2006).

58 David Guinn, “Introduction: Laying Some Ground Work,” in Handbook

of Bioethics and Religion, ed. David Guinn (Oxford: Oxford University
Press, 2006), 3.

59 Ibid., 6.

60 Ibid.

61 Ibid., 11–15.

62 Consider this book: Barrington Moore, Moral Purity and Persecution in

History (Princeton, NJ: Princeton University Press, 2000).

63 Guinn, “Introduction,” 8.

64 Ibid.

65 Ibid., our emphasis.

66 Relatedly, see Diogenes Allen, Christian Belief in a Postmodern World:

The Full Wealth of Conviction (Louisville, KY: Westminster/John Knox
Press, 1989).

67 Guinn, “Introduction,” 10.

68 Ibid.

69 Arthur Caplan, James McCartney, and Dominic Sisti, eds., The Case of
Terri Schiavo: Ethics at the End of Life (Amherst, NY: Prometheus Books,
2006).

70 H. Tristram Engelhardt, Jr., “Towards a Christian Bioethics,” Christian

Bioethics 1 (1995): 1.

71 Jonsen, “A History of Religion and Bioethics,” 33.

23 Suffering and Hope

1 Quoted in Jerome Groupman, The Anatomy of Hope: How People Prevail

in the Face of Illness (New York: Random House, 2004), ix.

2 Paul Tillich, The Shaking of the Foundations (New York: Charles

Scribner’s Sons, 1948), 106.

3 Arthur Kleinman and Joan Kleinman, “The Appeal of Experience; The

Dismay of Images: Cultural Appropriations of Suffering in Our Times,” in
Social Suffering, eds. Arthur Kleinman, Veena Das, and Margaret Lock
(Berkeley: University of California Press, 1997), 4. The following discussion
is based on pages 1–9.

4 See the PEW Forum on Religion and Public Life, “The Global Religious
Landscape,” December 18, 2012: http://www.pewforum.org/global-religious-
landscape-exec.aspx.

5 Kenneth Pargament, The Psychology of Religion and Coping: Theory,

Research, Practice (New York: The Guilford Press, 1997).
6 Eric Cassell, The Nature of Suffering and the Goals of Medicine, 2nd ed.
(Oxford: Oxford University Press, 2004).

7 Ibid., xii.

8 Ibid., 36–41.

9 Ibid., xii.

10 Eric Cassell, “Diagnosing Suffering,” Annals of Internal Medicine 131

(1999): 532.

11 We would add that Simone Weil has coined the term “affliction” for such
suffering. See Simone Weil, “Human Personality,” in Simone Weil: An
Anthology, ed. Siân Miles (New York: Grove Press, 1986), 70.

12 Bernard Lo, et al., “Discussing Religious and Spiritual Issues at the End
of Life: A Practical Guide for Physicians,” JAMA 287 (2002): 749–754.

13 C. S. Lewis, The Problem of Pain (New York: Simon & Schuster, 1996),
23.

14 Jeffry Zurheide, When Faith Is Tested: Pastoral Responses to Suffering

and Tragic Death (Minneapolis: Fortress Press, 1997), 19–25.

15 Gavin Flood, An Introduction to Hinduism (Cambridge: Cambridge

University Press, 2004), 75–76.

16 Houston Smith, The Illustrated World’s Religions: A Guide to Our

Wisdom Traditions (New York: HarperSanFrancisco, 1994), 43–44.

17 Bernard Faure, The Power of Denial: Buddhism, Purity, and Gender

(Princeton, NJ: Princeton University Press, 2003), 99–103.
18 Peter Harvey, Introduction to Buddhism: Teachings, History and
Practices (Cambridge: Cambridge University Press, 1990), 39.

19 Chokyi Nyima Rinpoche (with David Shlim), Medicine and Compassion:

A Tibetan Lama’s Guidance for Caregivers (Boston: Wisdom Publications,
2006), 26.

20 David Smith, Partnership with the Dying: Where Medicine and Ministry
Should Meet (New York: Rowman & Littlefield, 2005), 1–13, 39–62.

21 Robert Dykstra, “The Intimate Stanger,” in Images of Pastoral Care, ed.

Robert Dykstra (St. Louis, MO: Chalice Press, 2005), 123–136.

22 Ibid., 124.

23 Donald Capps, “The Agent of Hope,” in Images of Pastoral Care, ed.

Robert Dykstra (St. Louis, MO: Chalice Press, 2005), 189.

24 Ibid., 191.

25 Ibid., 193–194.

26 Sherwin Nuland, How We Die: Reflections on Life’s Final Chapter (New

York: Vintage Books, 1995), 222.

27 Ibid., 225.

28 Ibid., 229.

29 Ibid., 236.

30 Ibid.
31 Ibid., 241.

32 Ibid.

Epilogue

1 Quoted in Isaiah Berlin, The Crooked Timber of Humanity: Chapters in

the History of Ideas, ed. Henry Hardy (New York: Alfred A. Knopf, 1991),
vii.

2 John Stephens, The Italian Renaissance: The Origins of Intellectual and

Artistic Change before the Reformation (London: Longman, 1990), chs. 3–5;
Robert Proctor, Education’s Great Amnesia: Reconsidering the Humanities
from Petrarch to Freud (Bloomington: Indiana University Press, 1988), part
one. See also Douglas Biow, Doctors, Ambassadors, Secretaries: Humanism
and the Professions in Renaissance Italy (Chicago: University of Chicago
Press, 2002).

3 Bruce Kimball, Orators and Philosophers: A History of the Idea of Liberal

Education (New York: The College Board, 1995), chs. 2, 4, and 5.

4 See Jean Lyotard, The Postmodern Condition: A Report on Knowledge,

trans. Geoff Bennington (Minneapolis: University of Minnesota Press, 1984).

5 Martha Nussbaum, Cultivating Humanity: A History of Reform in Liberal

Education (Cambridge, MA: Harvard University Press, 1998); Not for Profit:
Why Democracy Needs the Humanities (Princeton, NJ: Princeton University
Press, 2010).
 Index
AAB (American Association of Bioethics) 340–343
AAMC (American Association of Medical Colleges), health concepts of
238–239
Abel, Emily 24
abortion
in Buddhism 300–301
in Christianity 304–306
Hindu beliefs concerning 297–299
Islam and 306–308
in Judaism 303
About Schmidt (film) 148–149
Abu-Raiya, Hisham 316–317
The Abuse of Casuistry (Jonsen) 340–343
academic health centers, emergence of 68–72
access to health care
bioethics and 252–255
equity in organization and distribution of 277
ethics of 285–286
gender differences in 263–264
medical technology and 83
power and 263–264
racism and 270–272
Accreditation Council for Graduate Medical Education 233–234
Ackerknecht, Erwin 22
Acres of Skin (Hornblum) 270–272
ACS (American College of Surgeons) 82
Adab literature 306–308
Addison, Heather 139–140
Aesclepius
disease and cult of 41–44
medicine in time of 27–29
public health and 90–91
affirmative action, medicine and 270–272
Affordable Care Act 98–99
African Americans
barriers to medical education for 67–72,
on E.R., 163
medical apartheid and 270–272
research involving 49–50, 270–272
Tuskeegee Syphilis Study and 52, 252–255, 272–273
agape, medieval norms in doctor-patient relationship and 29–30
age, in medical humanities 12–13
ageism, cultural emergence of 138–139
“The Agent of Hope” (Capps) 367–370
aging populations
cultural context for 138–139
disease rates in 52, 145–147
emergence in film of 140–143
in film 138–151
intergeneration and regeneration and 143–145
masculinity and 149–151
pathologization of, in film 139–140
sexuality and 148–149
vulnerability and care-giving in 145–147
agnosticism and near-death experiences 331–333
agriculture, disease and introduction of 90
AIDS. See HIV/AIDS
Alexander, Shana 252–255
Alport, Gordon 321–323
Alsop, Stewart 125–127
Alterra, Aaron 125, 128, 133–135
Alzheimer’s disease
in film 146
pathography of 133–135
AMA. See American Medical Association
American Association of Bioethics (AAB) 340–343
American Association of Medical Colleges (AAMC), health concepts of
238–239
American Board of Medical Specialties 233–234
American College of Surgeons (ACS) 82
American Medical Association (AMA)
Code of Ethics 31–33, 104, 109
medical education reforms and 64–68
medical technology and 78
opposition to health insurance 278–279, 414n5
Tuskegee Syphilis Study and 272–273
American Psychiatric Association 54–55, 244, 245–246
American Society for Bioethics and Humanities (ASBH) 291–293, 340–343
American Society for Reproductive Medicine 229–230
Amherst, Jeffrey 93–94
Amour (film) 147
An Unquiet Mind (Jamison) 246–247
“Ancient Gentilly” (Williams) 183–184
Anderson, Herbert 317–318
anesthesia
in childbirth 79–80
development of 76–77, 78–79
intermittent positive pressure ventilation technique and 82–83
animal domestication, disease and 90
Annas, George 153, 165, 342
anorexia 54–55
anthropology
bioethics and 259
cultural competency and 294–296
anti-heroism
in doctor show formula 164–165
in medical narratives 89–90
anti-miscegenation laws 96
antibacterial medications, development of 51
antibiotics, development of 52
antimalarial drugs, ethical issues in development of 52
Antiochis 58–59
antiquity
death and dying in 105–106
disease theory in 41–44
doctor-patient relationship in 27–29
 Judaism in 301
medical education in 58–60
public health in 90–91
technology in 75–78
Antiseptic Principle of the Practice of Surgery (Lister) 79–80
antiseptics, development of 79–80
Antonine Plague 90–91
Aquinas. See Thomas Aquinas
Arab culture, early medical education and 59–60
Ariès, Phillippe 24, 104–105, 106–107
Aristotle 58–59, 105–106, 259–261, 260f16
Ars Moriendi (art of dying) 107
arsenotherapy, Tuskegee Syphilis Study and 272–273
artificial blood substitutes, ethics of research on 273–274
artificial respiration 82–83, 84
see also mechanical ventilation systems
arts
medical humanities and 13
medicine in 123–124
mental illness and 246–247
metaphor in 333–336
Aryan ideology, public health policies and 97
ASBH (American Society for Bioethics and Humanities) 291–293
assisted suicide 115–116, 125–127
Atahualpa 93–94
atman (Hindu soul) 297–299
attention deficit/hyperactivity disorder 54–55
Auden, W. H. 169, 187–188
Auenbrugger, Leopold 77–78,
Augustine of Hippo (St.) 304–306
auscultation
history of 77–78
stethoscope and evolution of 78
Autobiography of a Face (Grealy) 125, 128, 132–133
automatic utopianism, bioethics and 255–257
autonomy principle
bioethics and 256–257, 340–343
 end of life care and 226
proceduralism and 257–259
autopsy.
See also dissection
early medical education and 58–59
history in Renaissance of 30–31
during Scientific Revolution 48
Avery, Eric 99–101, 100f5, 131
AWARE study 331–333
Away from Her (film) 146–147
Ayurvedic medicine 297–299

Bacon, Francis 47–48, 108–109

bacteriology, historical development of 50–51
Bad Blood (Jones) 270–272
Baile con la Talaca (Dance with Death) (Jimenez) 118f6
Bailey, Henry 270–272
Baken Brown, Isaac 268–270
Baker, Robert 24
baptism, in Christianity 304–306
barbers, surgeons and 76–77
Barnard, Christiaan (Dr.) 114–115, 252–255
Barth, Karl 345–346
Basic Christian Ethics, 341–342
Bates, Kathy 148
Battery, Robert 268–270
Bayley, John 146
Beauchamp, Tom L. 226, 255–258,
beauty
aesthetics of 211–212
aging and concepts of 139–140
arts as reflection of 123
disease and 246–247
feminist perspectives on 268–270
scarring and 125, 128, 132–133, 171–173
subjectification and 264–266
Beecher, Henry K. 252–255
Beginners (film) 149
Belmont Report 52, 252–255, 256–257, 347–348
Ben Casey (television show) 153, 156–157, 158–160
beneficence, principle of 27–29, 52, 230–231, 252–255
clinical ethics and 425n53
proceduralism and 257–259
Benjamin, Walter 49–50
Benson, Herbert 315
Berger, John 123–124, 181
Bergman, Ingmar 140–143
Berlin, Isaiah 216
Between Darkness and Light (McCleary) 283f18
Bible
ancient theories of disease in 41–44, 45
Christianity and 304–306
in Judaism 301–304
pastoral theology and 366–367
religion and health and 330–331
religion and mental illness and 333–336
suffering in 362–364
Bicêtre 49
Bichat, Xavier 49, 50
Billings, John Shaw 4, 21–22, 65
bimaristans (Islamic hospitals) 91–93
bioethics
access to health care and 286–287
conservative turn in religion and 353–355
contemporary discussions in religion and 352–355
emergence of 1–2
emergency room research 273–274
gender malleability theory and 266–268
healthcare reform and 285–286
Hinduism and 297–299
historical evolution of 252–255
history of religion and 340–343
House, M.D. television show and 164–165
moral philosophy and 251–261
 non-Christian perspectives in 355
philosophy and 255–257
pluralism and 350–351
proceduralism and 257–259
professional ethics and 348–350
public policy and religion 352
religion and 259, 340–355
secularization in 291–293
theological founders of 343–351
Tuskegee Syphilis Study and 272–273
world religions and 296–308
Bioethics at the Movies, 154
“Bioethics in Pluralistic Societies” (Engelhardt) 350–351
biomedical reductionism
dehumanization in health care and 1–2, 36–38
in medical education 4–6
physicians’ experiences with religion and 329–330
biomedical science, medical education and prominence of 4–6
biomedicine
birth of 49–51
disease model of 242–245
biopolitics, medical humanities and 11–12
biopsychosocial model of medicine 9–10
bioscience
knowledge theory and 214–216
limits of education in 199–201
biostatistical theory, normative model of disease and 242–243
biotechnology, current and future trends in 85–87
birth. See pregnancy and childbirth
birth control, in Christianity 304–306
The Birth of Bioethics (Jonsen) 340–343
The Birth of the Clinic (Foucault) 264
Bise, Michael 83–84, 84f4
Black and Blue (Hoberman) 270–272
Black Death 45–46, 91–93, 107
Blake, William 131, 327
Blanton-Peale Institute 317–318
Bleich, J. David 342–343
blood transfusions, artificial blood substitutes and 273–274
bloodletting
as early medical practice 48
early technology for 75–76
Boccaccio, Giovanni 91–93
body.
See also autopsy; dissection
in Buddhism 300–301
in Christianity 304–306
death and dying and 105, 109–110
disease and 8–9, 77–78, 247–249
feminist theory concerning 264–266, 268–270
gender and 266–268
genetic revolution and knowledge of 53–55
health in antiquity and 27–29, 41–44
health in Middle Ages and 44–46
in Hinduism 297–299
holistic concepts of 238–242
illness and awareness of 127–128
in Islam 306–308
in Judaism 301–304
in medical education 63–64
medical preoccupation with 225–226
medical technology and research on 81–84
mind and 245–247
nanotechnology and 85–87
near-death experiences and 331–333
normative model of disease and 242–245
in pain 9–10
in poetry 170–171
Renaissance medicine and 30–31, 46–47
scientific study of 47–48, 213–214
x-ray images of 80–81
Body Trauma TV, 154, 163
The Body Project (Brumberg) 264–266
Bok, Sissela 342
Bologna, University of, early medical education at 59–60
Bonner, Thomas 24
Book of Job, suffering in 362–364
Boorse, Christopher 237, 242–245, 249
Boston Doctors (Southworth) 271f17
bottom-up reasoning, bioethics and 259
Bowditch, H. I. 65
Brahma (Hindu Creator) 297–299
Brahms, Johannes 130
brain death concept 114–115
brain function
mental illness and 245–247
personhood and 347
Brâncusi, Constantin 303
Brandt, Allen 272–273
BRCA 1 and 2, breast cancer and 53–54
Breaking Bad (television show) 156
Britain. See Great Britain
Brody, Baruch 342–343
Brody, Howard 239
Broyard, Anatole 168, 195
Brumberg, Joan 264–266
Buber, Martin 220
bubonic plague
Antonine Plague 90–91
Black Death 45–46, 91–93, 107
epidemics in Middle Ages of 45–46
public health and 91–93
Buddhism
medicine and 299–301
suffering in 364–365
bulimia 54–55
burial rituals 107, 109
in Buddhism 300–301
in Christianity 304–306
Hindu preferences in 299
in Islam 306–308
burnout, in medical education 68–72
Bush, George W. 85–87, 353–355, 414–415n12
Butler, Robert 140–143
Buxtun, Peter 272–273

Cabot, Richard 35
Callahan, Daniel 231–232, 255–257, 259–261, 291, 342, 351, 412n35
Calvin, John 315
Calvinism, death and dying and 107–108, 109–110
Cambridge University, early medical education at 59–60
Cambridge World History of Medical Ethics, 24
The Cambridge Quarterly of Healthcare Ethics, 7–8
Campbell, Courtney 291–293, 351
cancer, pathography of 132–133
Canguilhem, Georges 239–240
Caplan, Arthur 154
Capps, Donald 367–370
Capron, Alex 342
Caraka Samhita, 297–299
The Caregiver: A Life with Alzheimer’s (Alterra) 125, 128, 133–135
caregiving
aging and 145–147
cultural competency and 291–293
goals of medicine concerning 228–229
narratives of 133–135
philosophy of 247–249
religion and spirituality and 308–310
religion and spirituality in 296
social constructivist and essentialist approaches to 228–229
Carel, Havi 274
Carlin, Nathan 291–293, 425n56
Carnegie Foundation for the Advancement of Teaching, medical education
research by 70–71, 206–207
Carroll, Lewis 40
Carson, Ronald 291–293
Carter, Kevin 358, 359f23
Cartwright, Samuel A. 243–244
Cassell, Eric 8–9, 225, 239, 342, 360–362, 375
castration (female) 268–270
casuistry and bioethics 259
Catholicism. See Roman Catholicism
cell theory
early microscopic research and 76–77
historical development of 50, 65
Center for Theological Inquiry 345–346
Central Intelligence Agency (CIA) 270–272
CFS (chronic fatigue syndrome) 54–55
Chadwick, Edwin 95–96
Chambers, Tod 154
Charaka Samhita (Ayurvedic Sanskrit text) 58
Charon, Rita 248
Chen, Pauline 192–194
Chervenak, Frank 425n53
Cheselden, William 318–321, 320f20
Chicago Hope (television show) 156–157
childbirth. See pregnancy and childbirth
Childress, James F. 226, 255–258, 341–342
China Beach (television show) 163
Chinese medicine, ancient theories of disease in 41–44
Chirurgua magna (The Great Surgery) (De Chauliac) 76–77
Chivers, Sally 138, 139–140, 149–150
cholera and public health 94–96
Christian Bioethics, 353–355
Christianity
bioethics and 340–343, 353–355
death and dying and 107, 108–110,
medicine and 304–306
medieval norms in doctor-patient relationship and 29–30
public health and 91–93
suffering in 362–364
theories of disease and 44–46
Christie, Julie 145, 146–147
chronic disease
dialysis for kidney disease and 83
 goals of medicine concerning 228–229
public health and 98–99
in twentieth century 53–55
chronic fatigue syndrome (CFS) 54–55
Church Fathers, medieval norms in doctor-patient relationship and 29–30
Churchill, Larry 286–287, 291–293
CIA (Central Intelligence Agency) 270–272
Cicero 2–4, 373
Cinematic Prophylaxis (Ostherr) 154–155
circumcision, in Judaism 303–304
civil rights, medicine and 270–272
Civil War, medical training and 64–68
class issues, power and medicine and 263–264
Clement VI (Pope) 91–93
clerical practitioners, medicine in Middle Ages and 29–30
climate change, global health and 101–102
clinical medicine
bioethics and 252–255
biopsychosocial model 9–10
birth of 49–51
Buddhism and 299–301
Christianity and 304–306
death and dying and 108–110, 115
early medical education and 58–59
experiential learning and 205
Hinduism and 297–299
hope in 368–370
interpretive understanding and 214–216
Islam and 306–308
Judaism and 301–304
knowledge theory and 213–214
medical education for 63–64, 70–71
narratives in 221–223
religion and spirituality and 296, 308–310
suffering in 362–367
technology and 74–87
x-ray technology and 80–81
Clinton, Bill 280–281, 414–415n12
Clinton, Hillary Rodham 280–281
clitoridectomy 268–270
cloning, current and future trends in 85–87
Clouser, K. Danner 255–257
“Code and Covenant or Philanthropy and Contract?” (May) 348–350
codes of ethics, covenants vs. 251, 348–350
Cohn-Sherbok, Dan 304
Coles, Robert 126–127
Cole, Thomas i, 379n.6, 7, 381n.49, 382n.59, 62, 396n.2, 397n.7, 16
College of St. Cosme (Paris) 76–77
colonialism
classification as justification for 264–266
death and dying and 107–108
epidemic disease and 46–47, 93–94
Columbia University, medical education at 63–64
Columbian theory of syphilis 46–47
Columbus, Christopher, spread of disease and explorations of 46–47
comedy, doctor show formula and 161–162
commercialization of medicine, humane care inhibited by 10
Committee on Medical Education and Theology 340–343
community consent principle, artificial blood substitutes and ethics of 273–
274
conception, in Islam 306–308
conceptual analysis, medical humanities and 14
conservative turn, in religion and bioethics 353–355
Constantine 44, 91
contagionist ideology, epidemic disease and 94
context, in medical humanities 12–13
contraception, in Christianity 304–306
contract theory, bioethics and 251
The Contributions of Theology to Medical Ethics (Gustafson) 344–345
Cooperman, Robert 173–175
Copernicus, Nicolaus 60–63
coping, religiousness and 321–323
Cornell University, medical education at 66
corporate transformation of American medicine 36–38
The Cosby Show (television show) 153, 156–157, 162
cosmetic medicine, power and 268–270
Coulehan, Jack 10
covenants and bioethics 251, 348–350
Crane, Ronald S., humanities defined by 2–4
Crawford, Joan 142–143
Crawford, Paul 7–8
The Creative Destruction of Medicine (Topol) 85–87
cremation, Hindu preference for 299
Crichton, Michael 163
Crick, Francis 53
critical analysis
cultural competency and 294–296
medical humanities and 11–12, 14, 373–377
Cullen, William 48
cultural competency, world religions and 294–296
Cultural Sutures (Friedman) 154
cultural values
aging and 138–139
bioethics and 291–293
for death and dying 104–105, 111–117
diversity and cultural pessimism in doctor show formula 163–164
in doctor-patient relationship 36–38
experiential learning and 201–206
health and disease and 237–238, 240–242, 263–264
healthcare reform and 283–285
in history of medicine 22
in medical humanities 12–13
pathologization of aging and 139–140
patient care and 291–293
power and medicine and 263–264
cupping technique, history of 75–76
Cushing, Harvey 4–5, 22
Cycladic idol from Syros 302f19
Czarny, Matthew 155–156

Dad (film) 146

Daiches, David 188
Daily Spiritual Experience Scale 321–323
Dalai Lama 300–301
Daly, Mary 268–270
danse macabre (dance of death) 107, 117–119
Danson, Ted 146
Dante 333–336
Darkness Visible: A Memoir of Madness (Styron) 125, 128–130, 246–247,
333–336
Dartmouth College, medical education at 63–64, 65–66
Darwin, Charles 96–97
data in medicine
digital technology and 85–87
epidemic research and 95–96
medical records development and 82
non-biomedical data sources 9–10
storage technology for 78
Davidson, Cathy 2–4
Davis, Bette 142–143
Davis, Cortney 203–204
De Chauliac, Guy 76–77
De Humani Corporis Fabrica (Vesalius) 60–63, 117–119, 198f12
De Staebler, Stephen 241f15, 242
dead donor rule 113–114
Dean, James 139–140, 158
death and dying.
See also end of life care; hospice care; mortality
aging populations and 138–139
in antiquity 105–106
bioethics and religion and 345–346
in Buddhism 299–301
in Christianity 304–306
cultural attitudes towards 104–105
doctor-writers on 183–195
in eighteenth and nineteenth centuries 108–110
end of life care and 230–231
experiential learning from 201–206
 goals of medicine concerning 228–229
in Hindu religion 297–299
hope and 368–370
in Islam 306–308
in Judaism 301–304
medical humanities and 373–377
in medieval and early modern era 106–108
modern medical care and 111–117
narratives of 125–127, 219–221
preparation for 233–234
religion and near-death experiences 331–333
right to die movement 104–105, 111–117, 340–343
self awareness and 231–232
signa mortifera of 105, 106
social constructivist and essentialist approaches to 228–229
Death at a Funeral (film) 117
Death Be Not Proud (Gunther) 125–127
Death of a Man (Wertenbaker) 125–127
Death of the Good Doctor: Lessons from the Heart of the AIDS Epidemic
(Scannel) 189–190
The Death of Ivan Ilych (Tolstoy) 110–111, 375–376
Decameron (Boccaccio) 91–93
Deciding to Forego Life-Sustaining Treatment, 226
Defoe, Daniel 89
dehumanization in health care
consequences of 16–17
history of medicine and 23
research on 1–2
Delivery of Health Services, 252–255
DeMattieis, Robert 368–370
DeMondeville, Henri 76–77
Dench, Judy 142–143, 145, 146
depression, Styron’s pathography of 128–130, 333–336
Desai, Prakash 297–299
Descartes, Rene 47–48, 214, 237, 245–247
desire
in Buddhism 299–301
 hope and 367–370
suffering and 364–365
detachment, as Buddhist value 299–301
determinism and suffering 362–364
Diagnostic and Statistical Manual of Mental Disorders, 244, 245–246, 333–
336
diagnostic technology
in Ayurvedic medicine 297–299
historical development of 77–78
modern evolution of 78–81
dialysis
bioethics of 252–255
development of 83
Dickey, James 171–173
didacticism, suffering and 362–364
dietary restrictions
in Buddhism 300–301
in Hinduism 297–299
in Islam 306–308
in Judaism 303–304
digital technology, medical practice and 85–87
Dilthey, Wilhelm 215
Dinesen, Isak 125
Dioscorides 106
disability
in film 142–143
media representations of 155–156
disciplinarianism, suffering and 362–364
Disclosure of Research Information, 252–255
“Discussing Religious and Spiritual Issues at the End of Life” (Lo) 362–367
disease.
See also chronic disease; epidemic disease; infectious disease
agriculture’s impact on 90
ancient theories of 41–44
in Ayurvedic medicine 297–299
biomedical model 242–245
birth of modern medicine and 49–51
 in Buddhism 300–301
Civil War and outbreaks of 64–68
deliberated transmission in colonialism of 93–94
diagnostic technology and 77–78
epidemiologic transition 52
genetic revolution and 53–55
germ theory of 50–51
health and 237–249
history of 40–41
illness vs. 9–10, 247–249
medicalization of 54–55
mental illness as 245–247
in Middle Ages 44–46
normative model 242–245
prevention of 228–229
public health and 89–90
Renaissance medical theories of 46–47
social constructivist and essentialist approaches to 228–229
social implications of 244–245
theories and conceptions about 40–55
in twentieth century 51–53
urban life and 90
dissection 62f3
see also autopsy
doctor-writers on 192–194
early medical education and 58–59
history of 63
in Renaissance 30–31, 60–63
during Scientific Revolution 48
diversity, on E.R., 163–164
dividing practices, knowledge and power and 264–266
DNA, structure of 53
doctor-patient relationship 26–38
in antiquity 27–29
bioethics and 251–252, 257–259
in Enlightenment era 31–33
Hindu beliefs and 297–299
 in late twentieth century 36–38
medical education and focus on 68–72
medieval religious norms and 29–30
in modern era 33–36
narratives of 219–223,
religion and spirituality issues in 296
in Renaissance 30–31
doctor show formula 153
see also specific show titles
anti-heroism in 164–165
cultural pessimism and diversity and 163–164
domesticated doctor in 162
existentialism in 160–162
future directions for 165
history of 156–165
medical education and 155–156
origins of 157–158
doctors. See physicians
The Doctor (Fildes) 33–40, 34f1
The Doctor’s Dilemma (Shaw) 33
The Doctor (Fildes painting) 33–34
The Doctor (television show) 156–157
domination, knowledge and power and 264–266
Donne, John 315
Doogie Howser, M. D. (television show) 156–157
Dossey, Larry 318
Dostoevsky, Fyodor 246–247
double-effect doctrine, in Christianity 304–306
Dr. Kildare (television show) 156–157
Dr. Quinn, Medicine Woman (television show) 156–157, 165
Drake, Daniel 64–68
drapetomania 244
Drebbel, Cornelius 76–77
drug resistance and global health 99–102
Duffin, Jacalyn 24
Duke Religion Index 321–323
Dykstra, Robert 366–367
Eakins, Thomas 217–219, 218f13
earning power and gender 263–264
Eastwood, Clint 145, 149–151
economics
dialysis technology and 83
medical education and role of 68–72
power and medicine and 263–264
structural racism and 270–272
Edinburgh, University of, early medical education at 31–33, 63–64
education, medical. See medical education
Edwards, Jonathan 107–108
Edwards, Vince 160
Egypt
early medical education in 58
early medical technology in 75
Eightfold Path of Buddhism 299–301
Eisenberg, Leon 247–249
elderly. See aging populations
electrocardiography 78
electronic medical record (EMR) 85–87
Eliot, Charles 65–66,
Eliot, T. S. 195
Elliott, Carl 251
embryonic stem cells, current and future trends in 85–87
emergency room research, ethics of 273–274
Emerging Infectious Diseases (Avery) 99–101, 100f5, 131
Emily Owens, MD (television show) 163
emotion
experiential learning and 205–206
intellect vs. 173–175
“Empiricists,” early medical education and 58–59
EMR (electronic medical record) 85–87
end of life care.
See also hospice care
bioethics and religion and 345–346
in Christianity 304–306
death and dying and 104–105
 in Islam 306–308
preparation for 233–234
religion and 291–293
suffering and 362–367
endemic disease
in modern era 52–53
science of 94–96
Engel, George 247–249
Engelhardt, H. Tristram Jr. 211–212, 242–245, 258–259, 350–351, 353–355
Enlightened Racism: The Cosby Show, Audiences, and the Myth of the
American Dream (Jhally and Lewis) 162
Enlightenment
death and dying and 108–110
disease theories during 47–48
doctor-patient relationship during 31–33
rationalism and 214
environmental determinants of disease
in antiquity 90–91
in Buddhism 300–301
epidemic disease
absence in prehistoric era of 90
colonialism and 93–94
in modern era 52–53
epidemiologic transition
aging and 138–139
in disease 52, 98–99
epidemiology
public health and 96–99
of religion 291–293, 318–321, 420n9
Epps, Roselyn 162
equity in health care, mutuality and sociality and 286–287
E.R. (television show) 153, 154, 156–157, 163–164
Erasmus, Desiderius 30–31
Erikson, Erik 140–143
essentialism, goals of medicine and 226–229
establishment clause (First Amentment) 352
Eternal Sunshine of the Spotless Mind (film) 154
ether 78
ethics.
See also morality
access to health care and 286–287
biomedical advances and conflict in 1–2, 49–50
death and dying and 109, 111–117, 231–232
end of life care and 226
genetic revolution and 53–55
in healthcare reform 285–286
human trait enhancement and 229–230
medical humanities and 5–6
normative ethics 255–257
Nuremburg Code and 52
organ transplantation issues 114–115
origins in Enlightenment 31–33
in photography 358–360
premodern ethics 255–257
technology and 74–75, 83, 85–87
in twentieth century medicine 52
“Ethics and Clinical Research” (Beecher) 252–255
ethnic identity
cultural competency and 294–296
medical apartheid and 270–272
eugenics and public health 96–97
euthanasia
death and dying and 115–116
in Hindu religion 297–299
Euthanasia Society of America 115–116
Evans, John 343, 353–355
Evans, Martyn 381n51
evocation, in poetry 171
evolutionary theory and public health 96–97
Ewing’s sarcoma, pathography of 132–133
Examining Tuskegee (Reverby) 270–272
exclusivity, medical humanities and problem of 7–8
existentialism, doctor show formula and 160–162
The Expendables (film) 149–150
experiential learning
medical humanities and 9–10, 13, 201–206
poetry and 168–181
experimental psychology, religion and 317

Fallen, Fallen, Light Renew (McCleary) 131, 131f7

families, death and dying and role of 111–112
Famine in Sudan (Carter) 358, 359f23
The Fascinating Room (Knight) 176–179
Fausto-Sterling, Anne 266–268
Feagin, Joe 162
Federal Code of Regulations, medical research and 52
federal commissions, bioethics and 252–255, 408–409n8
Fein, Rashi 277
femininity, subjectification of 264–266
feminist theory.
See also gender
bioethics and 259
Daly’s contributions to 268–270
Fetzer/NIA Multidimensional Measurement of Religiousness/Spirituality
321–323
FICA model of clinical care 308–310
Fildes, Luke 33–40, 34f1
film.
see also specific film titles
aging in 138–151
emergence of aging characters in 140–143
intergeneration and regeneration themes in 143–145
medicine in 154
pathologization of aging in 139–140
sexuality and aging in 148–149
Firdaws al-hikma, 59–60
First Amendment rights, public policy and religion and 352
Five Pillars of Islam 306–308
“The Five Sexes, Revisited” (Fausto-Sterling) 266–268
Fletcher, Joseph 341–342, 347
Flexner, Abraham 22, 67
 Carnegie Foundation analysis of model of 70–71
medical education and 197, 206–207
Fonda, Henry 145
foot-binding 268–270
Ford, Harrison 149–150
Foucault, Michel 49, 89–90, 263
medical humanities and philosophy of 266–274
on mental illness 336–337
on power and medicine 264–266
Tuskegee Syphilis Study and perspective of 272–273
The Foundations of Bioethics (Engelhardt) 258–259, 350–351
“Four Indicators of Humanhood” (Fletcher) 347
Four Truths of Buddhism 299–301
The Four Humours (Thurneisser zun Thurn) 43f2
Fowler, James 321–323
Fox, Ellen 197
Fox, Renée C. 201
Fracastoro, Girolamo 50–51
France
medical education in 63–64, 65
public health in 94
Frank, Arthur 126–127, 130, 133
free exercise clause (First Amendment) 352
freedom, bioethics and 257–259
Freeman, Morgan 149–151
Freud, Sigmund 74, 317, 329–330
Friedman, Lester D. 7–8, 154
Frohock, Fred 331–333
The Future of an Illusion (Freud) 329–330

Gadamer, Hans Georg 215

Gadow, Sally 410n29
Galen 4–6
ancient theories of disease and 43–44
Arab translations of 59–60
early medical education and 59
early medical technology and 75–76
 early surgery and influence of 76–77
Hippocratic legacy and 29
Plague of Galen 90–91
Renaissance re-appraisal of 30–31, 46–47, 60–63
Scientific Revolution and challenges to theories of 47–48
syphilis and theories of 47
Galton, Francis 96–97, 314–316
galvanometer 78
Gans-Boriskin, Rachel 157
Gattaca (film) 154
Gautama, Siddhartha 299–301, 364–365
Gaylin, Willard 342, 351
Geertz, Clifford 123–124, 294–296
Geiger, H. Jack 200
gender.
See also feminist theory; women; see also specific entries at sex
aging and issues of 142–143, 151
earning power and 263–264
femininity, subjectification of 264–266
intersex conditions 266–268
John Money controversy and 266–268
malleability theory of 266–268
in medical humanities 12–13
medical humanities and 375–376
power and medicine and 263–264
subjectification and 264–266
genetics
current and future trends in 85–87
disease and 53–55, 304
emergence of genetic engineering 53–54
genital ambiguity 266–268
genital mutilation 268–270
germ theory of disease 50–51
Germany
eugenics and Nazi ideology in 97
humanities scholarship and university system in 4–6
medical education in 63–64, 65
Ghosh, Tista 202
Giacometti, Alberto 377f24
Gibbs, Harlan 154
Gilman, Sander 154
Glasgow, University of, early medical education at 63–64
global health, challenges in 99–102
goals of medicine
human trait enhancement and 229–230
medical humanities and 225–235
God, Faith, and Health (Levin) 318–321
Goddier, Bethany 164–165
Goldberg, David 2–4
Golden Age of Spain 301
Golden, Michael 227, 227f14
Gorer, Geoffrey 111–112
Gorovitz, Samuel 342
Gorsuch, Richard 317
grave robbing 49–50
Grealy, Lucy 125, 128, 132–133
Great Britain
medical education in 63–64
National Health Service in 36–38
public health in 94–96
The Greatest Benefit to Mankind (Porter) 24
Greaves, David 381n51
Greece
ancient theories of disease in 41–44
Arab translations of texts from 59–60
doctor-patient relationship in early Greece 27–29
early medical education in 58–59
early medical technology in 75–76
health concepts in 238
medieval translations of texts from 59–60
public health in 90–91
Greek language, in medical education 4–6
Gregory, John 1, 31–33
Gregory, Kathleen 299–301
Grey’s Anatomy (television show) 156–157, 163
grief counseling 117
Griffith, Melanie 142–143
Griffiths, Martha W. 279
Growing Pains (television show) 156–157, 162
Guatemala Syphilis Study 274
Guidelines for Decisions on Life-Sustaining Treatment and Care Near the
End of Life, 233–234
Guinn, David 352–353
Gunther, John 125–127
Gustafson, James 341–342, 343, 344–345
Gyn/Ecology (Daly) 268–270
gynecology, feminist perspectives on 268–270

Habermas, Jürgen 215

Haid, Bruno 84
Hajj (Islamic pilgrimage) 306–308
Hall, Daniel 321–323
Hall, G. Stanley 317
Halsted, William 66
Handbook for Mortals: Guidance for People Facing Serious Illness, 233–234
The Handbook of Religion and Health (Koenig, King, and Carson) 316, 317–
318
Hands Holding the Void (Giacometti) 377f24
Hansen’s disease 45
happiness, personhood and 347
Harlow, Jean 139–140
Harry and Tonto (film) 143–145, 149
Harvard University, medical education at 63–64, 65–68
Harvey, Peter 300–301
Harvey, William 47–48
Hastings Center 345–346, 351
essentialist and social constructivist approach and 228–229
goals of medicine report from 226–229
Hastings Center Report, 255–257
Hatch, Orrin 414–415n12
Hauerwaus, Stanley 341–342
Hawke, Ethan 146
Hawking, Anne 336–337
Hawkins, Anne Hunsaker 126, 130, 133
Hays, J. N. 24
healing, holistic concepts of 238–242
health and health care.
See also access to health care
in Buddhism 300–301
in Christianity 304–306
critiques and skepticism concerning religion and 324
disease and 237–249
Enlightenment view of 47–48
equity in organization and distribution of 277
in Hinduism 297–299
holistic concepts of 238–242
Islam and 306–308
in Judaism 301–304
maintenance and promotion of 228–229
measuring religion’s impact on 321–323
religion and 296, 314–325
social constructivist and essentialist approaches to maintenance of 228–
229
state-oriented vs. person-centered views of 94–96
value-free theory of 242–245
health care industry, opposition to healthcare reform and 278–283
health humanities
exclusivity and hierarchy issues and 7–8
interdisciplinary approach in 2–4
health insurance
emergence of 98–99
history in U.S. of 278–283
health maintenance organizations (HMOs) 279
healthcare reform
ethics in 285–286
history of 278–283
moral issues in 283–285
power and politics surrounding 274
 Social Security Act and 278–279
The Health Humanities Reader, 7–8
Hellenistic period
medical education during 58–59
theories of disease in 43–44
Hellerstein, David 203
Hepburn, Katharine 145
Heracleides of Taras 58–59
hermeneutics 215
Herophilus of Chalcedon 58–59
Hertzler, Arthur 35
Hiatt, Howard 283–285
hierarchies, medical humanities and problem of 7–8
Hildegard of Bingen 29–30
Hinduism
medicine and health and 297–299
suffering in 364–365
Hippocratic Oath
in Enlightenment era 31–33
origins of 27–29
Hippocratics 4–6
ancient theories of disease and 41–44
Arab translations of 59–60
death and dying 105–106
early medical education and 58–59
early medical technology and 75–76
medicine in time of 27–29
public health and 90–91
Renaissance re-appraisal of 30–31, 46–47, 60–63
surgical techniques and 76–77
syphilis and theories of 47
Hispaniola, epidemic in 46–47, 93–94
history of medicine
in antiquity 27–29
doctor-patient relationship in 26–38
in Enlightenment 31–33
medical humanities and 4–5
 medieval religious norms and 29–30
modern doctor-patient relationship and 33–36
overview 21–25
in Renaissance 30–31
History of Medicine: Second edition, 24
History of Public Health (Rosen) 89–90
“The History of Religion and Bioethics” (Jonsen) 340–343
HIV/AIDS
circumcision and 303–304
doctor-writers on 189–190
global health and 101
religion and 330–331
research in Africa on 274
HMOs (health maintenance organizations) 279
Hoberman, John 270–272
Hoffman, Friederich 108–109
holistic health and healing 238–242
Holmes, Oliver Wendell 65
Holocaust 301
Holtz, Andrew 154, 164–165
holy shrines, as cure for disease 44–46
Holy Unction ritual 304–306
homeopathy, in nineteenth and early twentieth centuries 64–68
homosexuality
in Christianity 304–306
demedicalization of 54–55
as disease 244
in film 149
religion and 330–331
subjectification and 264–266
Hood, Ralph 317, 321–323
Hooke, Robert 50–51, 76–77
hope, suffering and 367–370
Hornblum, Allen 270–272
Horse and Buggy Doctor (Hertzler) 35
hospice care.
See also end of life care
 coverage for 233–234
development of 113–114
doctor-writers on 192–194
goals of 230–231
hospitals
in antiquity 105–106
childbirth in 79–80
death and dying in 111–117
growth of 35
in Middle Ages 91–93
technology’s impact in 81–84
House, M.D. (television show) 153, 156–157, 164–165
House, M.D. vs. Reality (Holtz) 154, 164–165
The House of God (Shem) 201
How We Die (Nuland) 368–370
Howard University 67–68
Howell, William 66
Hsi, Steven 1
Huayna Cupac 93–94
Human Genome Project 53
Human Personality and Its Survival after Bodily Death, 331–333
human subjects in research, bioethics and 52, 256–257
human trait enhancement, medical care and 229–230
humane medical care, education for 10
humanism
medical humanities and 5–6, 373–377
in Renaissance 30–31
humanities.
See also arts; health humanities; interdisciplinary humanities; literature;
medical humanities
definitions and terminology 2–4
western humanism tradition and 5
Hume, David 286–287
humoral theory of disease 41–44
bubonic plague and 45–46
challenges to 64–68
Renaissance examination of 46–47
 syphilis and 46–47
“Humpty Dumpty” theory of medicalization 54–55
Hunsberger, Bruce 317

“iatrine” (woman physician) 58–59

The Idea of the Holy (Otto) 333–336
identity formation, in medical humanities 14–15
idiographic inquiry, medical humanities and 328
The Idiot (Dostoevsky) 246–247
Ikiru (film) 140–143
illness.
See also mental health and illness
disease vs. 9–10, 247–249
mental illness as 245–247
narratives of 117, 123–124, 125–136, 219–221
public health and 89–90
impaired newborns, bioethics of caring for 252–255
Incan Empire, epidemic disease and destruction of 93–94
Incidental Findings: Lessons from My Patients in the Art of Medicine (Ofri)
190–192
income disparities, structural racism and 270–272
India
early medical education in 58
early medical technology in 75
Indiana Jones and the Kingdom of the Crystal Skull (film) 149–150
indigenous Americans, colonialism and disease among 46–47, 93–94
“The Indignity of ‘Death with Dignity’” (Ramsey) 345–346
infectious disease
in antiquity 90–91
colonialism and 93–94
epidemiologic transition and 98–99
global health and 99–102
mortality from 52
prevention, vaccination and antibiotics for 52
public health and 89–90
influenza epidemic of 1918 51–53
informed consent principle
 artificial blood substitutes and 273–274
bioethics and 252–255, 350–351
end of life care and 226
Inniss, Leslie 162
Innocent II (Pope) 75–76
insanity. See mental illness
Institute of Medicine 233–234
Institute on Human Values in Medicine 5–6, 291–293
Institutional Review Boards, 252–255
integrated care systems, medical education and 68–72
intellect, emotion vs. 175
intensive care units
death and dying and 113
evolution of 83
interdisciplinary humanities
bioethics and 255–257
emergence of 2–4
medical humanities as 7
intergeneration, aging and 143–145
intermittent positive pressure ventilation (IPPV) technique 82–83, 112–113
internships
in doctor show formula 156–157
experiential learning and 201–206
medical education and evolution of 68–72
students’ accounts of 201
The Interns (television show) 156–157
intersex conditions 266–268
Intersex Society of North America 266–268
“The Intimate Stranger” (Dykstra) 366–367
IPPV (intermittent positive pressure ventilation) technique 82–83, 112–113
Iris (film) 146
“iron lung,” 82–83
The Iron Lady (film) 147
Islam
early medical education and 59–60
Judaism and 301
medicine and 306–308
 public health and 91–93

Jackson, Mark 24
Jacobovitz, Immanuel 342–343
Jacobs, Jason 154, 163
James, William 314–316, 317, 324–325
Jamison, Kay 246–247, 333–336
Jefferson, Thomas 94, 352
Jehovah’s Witnesses 294–296
Jenner, Edward 51
Jews, barriers to medical education for 68–72
Jhally, Sut 162
Jimenez, Luis 118f6
John Money controversy 266–268
Johns Hopkins baby case 252–255
Johns Hopkins Hospital Historical Club 21–22
Johns Hopkins University Medical School 66
history of medicine at 22
medical education theory and 4, 21–22
women students at 67–68
Johnson, Lyndon Baines 279
Joint Commission on Accreditation of Health Care Organizations, hospice
care coverage and 233–234
Jonas, Hans 255–257, 342
Jones, Anne 8, 336–337
Jones, James 270–272
Jones, Therese 7–8, 154
Jones, Tommy Lee 149–151
Jonsen, Albert R. 226, 252–255, 291–293, 340–343
Jotterand, Fabrice 211–212
Journal of Religion and Health, 317–318
The Journal of Medical Humanities, 164–165
Judaism
bioethics and 342–343
early medical education and 58–59
health and medicine in 301–304
suffering in 362–364
Juengst, Eric 230
Jung, C. G. 317
justice
bioethics and 230–231, 252–255, 256–257
equity in health care and 286–287
in health care 277–287
organization and distribution of healthcare and 277
proceduralism and 257–259
social constructions of 277–278
theological implications of 347–348

Kakar, Sudhir 297–299

Kaling, Mindy 165
Kandel, Eric 245–246
Kant, Immanuel 48, 373, 374
kapha (Hindu elements) 297–299
karma
in Buddhism 300–301
as Hindu law of causation 297–299
Kass, Leon 240, 353–355
Katz, Jay 342
Kehoe, Nancy 327–328
Kelly, Howard 66
Kemmer. Edward 50–51
Kennedy, Edward 226, 279, 414–415n12
Kennedy, John F. 279
Kermode, Frank 104–105, 374
Kevorkian, Jack (Dr.) 116
kidney disease. See dialysis
Kim, Karen 70, 202
“King of Terrors,” death as 107
Kings College. See Columbia University
Kirkpatrick, Lee A. 321–323
Klass, Perri 205
Kleinman, Arthur 294–296, 308–310, 358–360
Kleinman, Joan 358–360
Knight, Stephen 176–179
knowledge theory
Foucault on politics and knowledge production 264–266
interpretive understanding 214–216
narrative medicine and 217–223
overview 213–214
philosophy of medicine and 213–223
rationalism and 214
Koch, Kenneth 170–171
Koch, Robert 50–51, 95
Koenig, Harold 296, 299, 304–306, 314–325,
Kohn, Douglas 301–304
Kron, L. 199–200
Ku Klux Klan 270–272
Kubler-Ross, Elizabeth 113–114
Kurosawa, Akira 140–143
Kurzweil, Ray 85
kymograph 78

Laennec, Rene 78
The Lancet, 324
language, knowledge production and 264–266
Larson, David 304–306
laryngoscope 78, 80–81
Last Wish (Rollins) 125–127
Latin, in medical education 4–6
learned medicine, history of 58–60
The Learner (Olds) 179–180
Lebacqz, Karen 342, 347–348
A Leg to Stand On (Sacks) 125, 127–128
Leiman, Mikael 8–9
Lemmon, Jack 145
leprosy 45
Leriche, René 237–238
Levin, Jeffrey 318–321, 420n9
Lewis, Justin 162
liberal arts
medical education and 4–6
 medicine and 123–124
liberal education tradition and humanities 2–4
life expectancy
Ayurveda medical tradition and 297–299
disease and 52
gender-based patterns in 263–264
lifestyle
in ancient theories of disease 43–44
in Ayurvedic medicine 297–299
preventive medicine and 98–99
Lipchitz, Jacques 303
Lister, Joseph 79–80
literature
doctor-writers in 183–195
medicine in 123–124
on mental illness and medical humanities 336–337
on religion and health 316–317
on suffering 360–362
“Literature and Medicine: Narratives of Mental Illness” (Jones) 336–337
Lo, Bernard 362–367
Locke, John 48, 77–78
Louis, Pierre 65
Love Undetectable (Sullivan) 330–331
Ludmerer, Kenneth 24, 66, 69, 205–206
lunaria predictions 106
Lustig, Andrew 291–293
Luther, Martin 30–31, 315
Lynn, Joanne 233–234

Madness and Civilization (Foucault) 264, 336–337

Magaziner, Ira 280–281
The Magic Mountain (Mann) 80–81
Mahayana Buddhism 300–301
malaria and global health 99–102
Mall, Franklin 66
Malphighi, Marcello 76–77
Mann, Thomas 80–81
Männliches Bildnis (Selbstbildnis) (Portrait of a man (Self portrait)) (Heckel)
334f21
manual diagnostic techniques, modern evolution of 78
Marcus Aurelius 89
Marcus Welby, M.D. (television show) 156–157
Markel, Howard 21, 22
market mechanisms
healthcare distribution and access and 277–278
healthcare reform and 283–285
Markowitz, Gerald 21
Marshall, Patricia 294–296
Martensen, Robert 225–226
masculinity and aging, in film 149–151
M*A*S*H (television show) 153, 156–157, 160–162
mass longevity, aging populations and 138–139
Massachusetts General Hospital, medical records system in 82
masturbation
clitoridectomy and 268–270
as disease 244
maternal and child welfare, public health policies and 97
Mavani, Hamid 306–308
maxims, bioethics and 259
May, William F. 258–259, 291–293, 348–350
McCleary, Mary 131, 131f7, 283f18
McCormick, Richard 291–293, 340–343, 347
McCullough, Laurence 24, 425n53
McGrath, Alister 304–306
McKinley, William 80–81
McLaine, Shirley 142–143
McNeur, Ronald 291–293
Meador, Keith 321–323
measles, in antiquity 90–91
mechanical ventilation systems 82–83
see also artificial respiration
media
health and healing in 240–242
literature review of medicine and 154–156
 medicine in 123–124, 153–165
representations of disability and pedagogical debate in 155–156
Media and Health (Seale) 154–155
Medic (television show) 153, 156–158
Medicaid
corporate transformation of American medicine and 36–38
healthcare reform and eligibility for 282–283
history of 279
public health and 98–99
Medical Apartheid (Washington) 270–272
medical education
in bioscience 199–201
birth of learned medicine 58–60
Carnegie Foundation analysis of 70–71
characteristics of 57–58
cultural competency training and 294–296
curricula reforms in 8–9, 381n51
doctor show formula and 160
in eighteenth century 63–64
in Enlightenment period 31–33
experiential learning and 201–206
future issues in 36–38
history of medicine in 21–25
humanities in early forms of 4–6
interpretive understanding and 214–216
media representations of 155–156
in modern era 33–36
in nineteenth and early twentieth centuries 64–68
for physicians 57–72
post–World War I changes in 68–72
in Renaissance 30–31, 60–63
students’ experiences in 197–207
world religions in 296–308
medical ethics. See ethics
Medical Ethics (Percival) 31–33, 109
medical holism, concepts of 8–9
medical humanities
 concepts and goals in 8–12
context in 12–13
debates and problems concerning issues in 6–8
definition of 12–15
exclusivity and hierarchy problems in 7–8
experiential learning and 9–10, 13, 201–206
field vs. discipline debate concerning 7
Foucauldian interpretations in 266–274
future issues in 373–377
history of medicine and 21–25
House, M.D. television show and 164–165
humane physician care in 10
idiographic inquiry in 328
intellectual development and 11
interdisciplinary approach in 2–4
medical education and 9–10, 13, 201–206, 400–401n11
as moral critique and political aspiration 11–12
origins of 4–6
pathography and 125–127
poetry and 168–181
power and 263–274
practical/instrumental vs. intellectual/critical tension in 8
religion and 291–293
“salvation theme” in 5–6
science-experience bridge in 9–10, 381n51
world religions and 294–311
Medical Humanities, 291–293
medical records
electronic medical record 85–87
technology’s influence on 81–84, 85
medical research
modern focus on 36–38
Nuremburg Code and 52
Medical Visions (Ostherr) 154–155
medicalization
of childbirth 79–80
of death and dying 104–105, 108–110, 111–117
 genetic revolution and 53–55
of health and disease 237–238
history of disease and 40–41
Medicare
corporate transformation of American medicine and 36–38
dialysis payments in 83
healthcare reform and eligibility for 282–283
history of 279
hospice care coverage under 233–234
public health and 98–99
Medicine and Slavery (Savitt) 270–272
“Medicine and the Humanities – Theoretical and Methodological Issues”
(Puustinen, Leiman and Viljanen) 8–9
Medicine’s Moving Pictures (Reagan, Tomes, and Treichler) 154, 157
The Medicine of ER (Ross and Gibbs) 154
Medicus Politicus (The Politic Physician) 108–109
medieval period
bubonic plague epidemics 45–46
death and dying in 106–108
disease in 44–46
Greece, medieval translations of texts from 59–60
health in 44–46
hospitals in 91–93
medical education in 59–60
public health in 91–93
religious norms and doctor-patient relationship 29–30
surgery and technology in 76–77
“tame death,” concept of 106–107
women practitioners excluded in 29–30
Meharry Medical College 67–68
Meigs, Charles 268–270
Meilaender, Gilbert 291–293
melancholia. See mental health and illness
Mendelssohn, Felix 127–128
mental health and illness
in Ayurvedic medicine 297–299
disease theory and 245–247
 medical humanities and 336–337
personhood and 347
religion and 327–337,
Styron’s pathography of 128–130
Merck Manual of Geriatrics, 134
Mercy (television show) 158–159, 159f9
metaphorical analysis, irreducibility of human experience and 333–336
methodological principlism, bioethics and 258–259
Metzl, Jonathan 154, 240–242, 336–337
miasmatic theory of disease 43–44
bubonic plague and 45–46
challenges to 94–96
public health and 91–93
re-examination of 50–51
Michigan, University of, medical education at 65–66,
Micrographia (Hooke) 76–77
microscope
influence on diagnosis of 77–78
introduction of 76–77
Middle Ages. See medieval period
midwifery, history of 58–59, 64–68
Miles, Steven 333–336
Million Dollar Baby (film) 154
mind cure techniques 314–316
The Mindy Project (television show) 153, 156–157, 163, 165
misogyny, power and 268–270
modern medicine
birth of 49–51
goals of 225–235
moksha (Hindu liberation concept) 297–299
molecular biology, current and future trends in 85–87
Monroe, Marilyn 139–140
Montgomery, Kathryn 215
Montpellier, University at, early medical education at 59–60
Moore, Henry 303
Moore, Marianne 169
morality.
 See also ethics
bioethics and 258–259, 340–343
biomedical advances and 1–2
death and dying and 231–232
disease theory and 242–245
experiential learning and 201–206
health linked to 96–97, 240–242
healthcare reform and 283–285
Hindu karma and 297–299
medical humanities as critique of 11–12
moral philosophy and bioethics 251–261
poetry and moral imagination in medicine and 168–181
Morals and Medicine (Fletcher) 341–342
More, Ellen 24
“More than 100 Million Women are Missing” (Sen) 375–376
Morgan, John 63–64
Morgnani, Giovanni Battista 48, 49, 50, 77–78
morphine, anesthesia and 78
mortality.
See also death and dying; life expectancy
disease and 52
gender-based patterns in 263–264
modern causes of 52–53
Morton, William 78
Moser, James 157–158
Mullan, Fitzhugh 200–201
multidimensional analysis, of religion and health 321–323
multidisciplinary approach, in medical humanities 7
Murdoch, Iris 146
“Musaeum” at Alexandria 58–59
music, illness and 127–128, 130
Muslims. See Islam
Myers, Frederic 331–333

Naewbood, Supaporn 300–301

nanomedicine, current and future trends in 85–87
Naples, University of, early medical education at 59–60
narrative medicine.
See also pathography
bioethics and 259
caregiving and 247–249
cultural narratives 126–127
of doctor-writers 183–195
heroic/anti-heroic narratives in public health 89–90
heroic rescue medicine narrative 125–127
illness narratives 117, 123–124, 125, 219–221
knowledge through 217–223
mental illness narratives 246–247
patient narratives 77–78
poetry and 168–181
spiritual histories and 296
nation state
modern views of health in 94–96
public health and 89–90, 96–99
National Commission for the Protection of Human Subjects of BIomedical
and Behavioral Research 252–255
National Health Service (Great Britain) 36–38
National Hospice Organization 113–114
natural disasters, global health and 99–102
The Nature of Suffering and the Goals of Medicine (Cassell) 239
Naturphilosophie, 65
Nazi ideology and eugenics 97
near-death experiences, religion and 331–333
Neolithic Revolution 90
neuropsychiatry 246–247
neutrality standard
public policy and religion and 352
secularism and 353
New Science, in Renaissance 60–63
Nicholson, Jack 145, 148–149
Nietzsche, Friedrich 124
Nightingale, Florence 79–80, 81–82
Nirguna Brahman (Hindu god) 297–299
Nixon, Richard M. 279
No Country for Old Men (film) 149–151
non-Christian religions.
see also specific religions
bioethics and 355
suffering in 364–365
nonmaleficence
bioethics and 230–231, 256–257
proceduralism and 257–259
nonrationality, religion and 327–328
normative ethics 255–257
normative model of disease 242–245
nosokomeia (early hospitals) 91–93
nosology disease classification system 48
Nuland, Harvey 368–370
Nuland, Sherwin 368–370
Nuremburg Code 52
Nussbaum, Martha 2–4, 373

Obama, Barack 85–87, 270–272, 414–415n12

objectification, knowledge and power and 264–266
The Office, 165
Ofri, Danielle 190–192
Olds, Sharon 179–180
On Airs, Waters, Places, 90–91
On Anatomical Procedures (Galen) 60–63
“On (Only) Caring for the Dying” (Ramsey) 345–346
On Death and Dying (Kubler-Ross) 113–114
On Golden Pond (film) 145
“On Our Own Terms: Moyers on Dying” (television program) 233–234
On the Sites and Causes of Disease (Morgnani) 48
O’Neil, William 24
onomancy predictions 106
opium, anesthesia and 78
opthalmoscopes 78, 80–81
organ transplantation
bioethics and 252–255
death and dying and 114–115
 doctor-writers on 192–194
Hindu beliefs concerning 297–299
Orientalism (Said) 264–266
Osler, William 4, 5–6, 21–22, 35–36, 57, 66
Osteographia: Or, The Anatomy of Bones (Cheselden) 318–321
Ostherr, Kirsten 154–155
Otto, Rodolf 333–336
overtreatment, bioethics and 345–346
Oxford University, early medical education at 59–60
The Oxford Handbook of the History of Medicine (Jackson) 24
Ozick, Cynthia 169

Pacini, Filippo 95
Padela, Aasim 306–308
Padua, University of, early medical education at 59–60
pain management
death and dying and 109, 116, 203–204
as goal of medicine 228–229
medical reductionism and 1
physician’s duty concerning 108–109
religious attitudes concerning 109–110
social constructivist and essentialist approaches to 228–229
suffering vs. 9–10
in surgery 78–79
technologies for 112–113
palliative care, specialization in 233–234
see also end of life care; hospice care
panchakarma, in Ayurvedic medicine 297–299
panic disorder 54–55
“A Parable” (Selzer) 187–188
parables, by doctor-writers 187–188
Paracelsus 46–47
Pargament, Kenneth 316–317, 321–323
Paris, University of, early medical education at 59–60
Parnia, Sam 331–333
Parsons, Williams 317
Partnership with Dying (Smith) 365–366
Pasteur, Louis 50–51
pastoral theology
bioethics and 425n56
suffering and 366–367
pathography (illness narrative)
characteristics of 125–127
mental illness narratives 246–247, 336–337
religion and mental illness and 333–336
“Pathography: Patient Narratives of Illness” (Hawkins) 336–337
pathology
in Ayurvedic medicine 297–299
birth of modern medicine and 49–51
patient care. See caregiving; doctor-patient relationship
“Patient Examines the Doctor” (Broyard) 195
patient narratives, diagnosis and role of 77–78
patient-physician relationships. See doctor-patient relationship
Patient Protection and Affordable Care Act 282–283
patient records. See medical records
Patient Self-Determination Act of 1990 116
The Patient as Person (Ramsey) 231–232, 341–342, 345–346
patriarchy, in medicine 7–8, 268–270
Pattison, Stephen 291–293
Peabody, Francis Weld 26, 35–36
Pearl, Raymond 82
pedagogical debate, media representations of 155–156
Pellegrino, Edmund
bioethics and 342, 353–355
holistic health and healing and 239
Institute on Human Values in Medicine and 291–293
on internships and residencies 201
medical education and 8–9, 11, 23
medical humanities and 5–6
philosophy of medicine and 211–212, 404n5
penicillin
development of 51
Tuskegee Syphilis Study and 272–273
Pennsylvania, University of, medical education at 63–64, 65–66
Percival, Thomas 31–33, 109
percussive diagnosis, history of 77–78
personhood concept
bioethics and 347
medical humanities and 8–9
public health and 94–96
suffering and 360–362
Petrarch, humanitas of 2–4
philosophy of medicine
bioethics and 255–257, 342
caregiving and 247–249
constructivism vs. essentialism 226–229
death and dying and 105–106
Foucauldian interpretations in 266–274
goals of medical care and 225–235
health and disease and 237–249
interpretive understanding and 214–216
knowledge and power and 264–266
knowledge theory and 213–223
medical humanities and 8–9
moral philosophy and bioethics 251–261
overview of 211–212
rationalism and 214
“Philosophy, Theology, and the Claims of Justice” (Lebacqz) 347–348
photography, x-ray technology and 80–81
phthisis, ancient Greek concept of tuberculosis and 41–44
physician-assisted death 115–116
doctor-writers on 189–190
in Hindu religion 297–299
physicians.
See also doctor-patient relationship; doctor show formula
in antiquity 27–29
corporate transformation of American medicine and 36–38
death and dying and 111–117, 231–232
in Enlightenment period 31–33
ethics and 251–252
humane care by 10
 increase in number of 54–55
medical education for 57–72
in Middle Ages 29–30
religious experiences of 329–330
in Renaissance 30–31
underrepresentation of minorities and women as 67–68
as writers 183–195
Pitié-Salpêtrière Hospital 49
pitta (Hindu elements) 297–299
Pius XII (Pope) 84
plague, bubonic. See bubonic plague
Plague of Athens 90–91
Plague of Galen 90–91
Plato 27–29, 260f16
Playing Doctor (Turow) 153
Pliny 106
pluralism
bioethics and 350–351
public policy and religion and 352
The Plutonium Files (Welsome) 270–272
poetry
by doctors 183–186
experiential learning and 203–204
by medical students 199–200
medicine and 168–181
polio epidemic, “iron lung” and 82–83
politics
disease theory and 243–244
Foucault on knowledge production and 264–266
healthcare reform and 278–283
public health and 94, 98–99
suffering and 358–360
population health, public health and 96–99
populations, aging. See aging populations
Porter, Dorothy 24, 89–90
Porter, Roy 24
Portrait of Dr. Samuel D. Gross (Eakins) 218f13
post-traumatic stress disorder (PTSD) 54–55
postmodernism, humanities and 2–4
poverty
as barrier to medical education 67
clinical medicine in urban hospitals and 35
disease and 44–46, 50–51
epidemic and endemic disease and 52–53, 89–90
eugenics movement and 96–97
global health and 99–102
medical education and issues of 70, 199–201
medical humanities and role of 375–376
medieval religious norms and 29–30, 91–93
structural racism and 270–272
power
bioethics and philosophy and 255–257
biopolitics and role of 11–12
concepts of health and 238–242
end of life care and 230–231
exclusivity and hierarchy and 7–8
feminist theory on 268–270
gender malleability theory and 266–268
history of medicine and 21–25
humanism and study of 5
knowledge and 264–266
medical apartheid and 270–272
medical humanities and balance of 375–376
medicine and 263–274
normative models of disease and 242–245
race, gender and class and 263–264
technology and 78–81
Tuskegee Syphilis Study as example of 272–273
prayer and health 315, 318–321
Praying Skeleton (Cheselden) 318–321, 320f20
pre-menstrual syndrome 54–55
pregnancy and childbirth.
See also abortion
conception, in Islam 306–308
 contraception, in Christianity 304–306
Hindu beliefs concerning 299
modern technology and medicalization of 79–80
prejudice vs. racism 270–272
premature death, concern over 109
premodern ethics 255–257
President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research 226, 285–286
President’s Council on Bioethics 5–6, 353–355
President’s Task Force on National Health Care Reform 280–281
preventive medicine
Ayurvedic medicine and 299
public health and 98–99
social constructivist and essentialist approaches to 228–229
principles-and-applications method, bioethics and 257–259
Principles of Biomedical Ethics (Beauchamp and Childress) 226, 255–257
principlism, bioethics and 256–257
Pringle, Terry 219–221
private practitioners
corporate transformation of American medicine and 36–38
emergence in modern era of 36–38
proceduralism, bioethics and 257–259
professional health care givers
Buddhism and 299–301
dehumanization and 1–2
ethics of 348–350
Hindu beliefs and 297–299
Judaism and 301–304
medical education for 68–72
practical theodicies of 365–366
technology and 74–87
world religious education for 296–308
professional identity formation
internships in medicine and 68–72
medical education and 70–71
medical ethics and 251–252
in medical humanities 14–15
 x-ray technology and 80–81
professionalism
educational enrichment and 11
medical humanities’ research on 10
profit incentives, dehumanization in health care and 1–2
Prophet Muhammad 306–308
proprietary schools, medical education and 64–68
The Protest Psychosis: How Schizophrenia Became a Black Disease (Metzl)
336–337
psychiatric illness. See mental health and illness
psychiatry
mental illness and 245–247
politics and 243–244
sexuality and 244
psychology and religion 317
psychometric instruments, measurement of religion and health using 321–323
Psychosurgery, 252–255
PTSD (post-traumatic stress disorder) 54–55
public discourse, religious arguments in 352–353
public health
in antiquity 90–91
germ theory and reorientation of 50–51
global health challenges and 99–102
heroic vs. anti-heroic narratives of 89–90
history of 89–102
modern populations’ health status and 94–96
modern state infrastructure and 96–99
twentieth century advances in 36–38
public policy
history of 21–25
religion in 352
Puchalski, Christina 8–9, 296, 308–310
puerperal fever 79–80
Purnell Model for Cultural Competence 294–296, 299
Puustinen, Raimo 8–9

quality of life, impact of disease on 1

quarantine
bubonic plague and 45–46, 91–93
germ theory of disease and 50–51
politics of 94
yellow fever epidemic and 93–94
Quinlan, Karen Ann 115, 226, 405n19
Qur’an 306–308

Rabban al-Tabari, Ali ibn 59–60

Rabbinic Period of Judaism 301
Rabinow, Paul 264–266
race and racism.
See also stereotyping
in antiquity 27–29
bioethics and 252–255
biomedical knowledge and 52
in The Cosby Show, 162
diversity, on E.R., 163–164
eugenics movement and 96–97
medical apartheid and 270–272
in medical education 67–68, 200
in medical humanities 12–13
medical humanities and 376
mental illness and 336–337
power and medicine and 263–264
prejudice vs. 270–272
Tuskeegee Study of syphilis and 52
Tuskeegee Syphilis Study and 52, 252–255, 272–273
radiation and x-ray technology 80–81
Ramadan 306–308
Ramsey, Paul 231–232, 291–293, 341–342, 345–346, 353–355
rationalism 214
Rationing Health Care in America (Churchill) 286–287
RCOPE scales 321–323
Reagan, Leslie 154
Reagan, Ronald 280
realism in medicine, in doctor show formula 163–164
Redford, Robert 145
reductionism
dehumanization in health care and 1–2, 36–38
in medical education 4–6
physicians’ experiences with religion and 329–330
Regelson, William 160
regeneration, aging and 143–145
Reimer, David 266–268
Reiser, Stanley 24, 74–75
relationality, personhood and 347
religion.
See also spirituality; theology; see also specific religions
in ancient theories of disease 43–44
bioethics and 259, 340–355
bubonic plague and 45–46
clinical approaches to patient care and 308–310
conservative turn in bioethics and 353–355
contemporary discussions in bioethics and 352–355
critiques and skepticism concerning health and 324
cultural competency and 294–296
death and dying and 105–106, 108–110,
disease and 246–247
early medical education and 58–59
Enlightenment theories of disease and 48
epidemiology of 291–293, 318–321, 420n9
health and 296, 314–325
history of bioethics and 340–343
intrinsic/extrinsic religion 321–323
irreducibility of human experience and 333–336
measuring impact on health of 321–323
medical humanities 375
medicine and 291–293
mental health and 327–337
metaphor and 333–336
near-death experiences and 331–333
non-Christian perspectives in bioethics and 355
nonrationality and 327–328
 patient care and 296
physicians’ experiences with 329–330
psychology and 317
in public discourse 352–353
public health and 91–93
public policy and 352
research on 314–316
secular reasoning and 353
suffering and 375
surgery and 75–76
world religions and medical humanities 294–311
“Religion and the Secularization of Bioethics” (Callahan) 351
“Religion, Poetry, and the ‘Dilemma’ of the Modern Writer” (Daiches) 188
religiosity, health and, measurement of 321–323
“A Religious Experience” (Freud) 329–330
Renaissance
death and dying in 107–108
history of medicine in 30–31
medical education during 60–63
medicine and disease in 46–47
renal failure. See dialysis
Report on the Sanitary Condition of the Labouring Population (Chadwick)
95–96
rescue medicine, bioethics and 255–257
research
bioethics and 252–255
dominance in medical schools of 68–72
in emergency rooms 273–274
with human subjects 52, 256–257
measurement of religion and health 321–323
race and racism in 49–50, 270–272
on religion and health 316–317
Tuskegee Syphilis Study and ethics in 272–273
Research Involving Children, 252–255
Research Involving Prisoners, 252–255
Research Involving Those Institutionalized as Mentally Infirm, 252–255
residency
 in doctor show formula 163
experiential learning and 202
medical education and evolution of 68–72
proposed reforms for 201
respirator technology, development of 84
Reverby, Susan 21, 23, 270–272
Revolutionary War, medicine during 63–64
right to die movement 104–105, 111–117, 340–343
Risse, Gunther 24
Robert Wood Johnson Foundation 233–234
Rockefeller Commission on the Humanities 2–4
Roentgen, WIlhelm 80–81
Rollins, Betty 125–127
Roman Catholicism
bioethics and 340–343
homosexuality and 330–331
medicine and 304–306
Roman Empire
early medical education in 58–59
early medical technology in 75–76
public health in 90–91
theories of disease and 43–44
Romanticism, death and dying and 108–110
Roosevelt, Franklin Delano 278–279
Rosen, George 22, 89–90
Rosenberg, Charles 24
Rosenfield, Stephen S. 125–127
Rosner, David 21, 23
Ross, Alan 154
Rothman, David 21, 24, 283–285
Rothman, Sheila 21
Rousseau, Jean-Jacques 48
The Rule and Exercise of Holy Dying (Taylor) 109–110
rural life
medical care and 36–38
public health and 90–91
Rush, Benjamin 48, 63–64, 94
Sabin, Albert 51
Sachedina, Abdulaziz 306–308
Sacks, Oliver 125, 127–128
Saguna Brahman (Hindu god) 297–299
Said, Edward 264–266
salat (Islamic daily prayer) 306–308
Salk, Jonas 51
salvation theme, in medical humanities 5–6
samsara (Hindu reincarnation cycle) 297–299
Sandel, Michael J. 230, 283–285
Sanger, Margaret 96
Saunders, Cicely 113
Savitt, Todd 270–272
sawm (Islamic fasting) 306–308
SBC (Society for Bioethics Consultation) 340–343
Scannel, Kate 189–190
The Scarred Girl (Dickey) 171–173
Schiller, Preston 420n9
School of Athens, 259–261
science
bioethics and 255–257
death and dying and 108–109
in Enlightenment era 31–33
and experience, in medical humanities 9–10
medical education and 65
in modern medical history 35–36
public health and 94–96
in Renaissance 30–31
scientific classification, knowledge, and power 264–266
Scientific Revolution and disease theories 47–48
Scrubs (television show) 156–157, 163
Seale, Clive 154–155
The Seats and Causes of Disease (Morgnani) 77–78
secular traumatology, early medical education and 58–59
secularism
bioethics and 340–343, 350–351
neutrality limits to 353
 in public discourse 352–353
religious arguments and 353
Securing Access to Health Care: The Ethical Implications of Differences in
the Availability of Health Services, 285–286
Sefl-interest and Universal Health Care (Churchill) 286–287
self-consciousness and personhood 347
self-examination and medical humanities 5–6, 11–12
Selzer, Richard 186–188
Sen, Amartya 263–264, 375–376
Seneca 105–106
sensibility, in doctor-writers 195
Separacion del Cuerpo y del Alma (Separation of the Body and the Soul)
(Posada) 346f22
Sertürner, Friedrich 78
sex selection, ethics of 229–230, 405n14
sexism, in medical humanities 12–13
sexual assault, narratives of 221–223
sexuality
aging and 148–149
in Christianity 304–306
health and 240–242
intersex conditions 266–268
Islam and 306–308
John Money controversy and 266–268
in medical humanities 12–13
subjectification and 264–266
Shah, Manoj 297–299
shahada (Islamic affirmation) 306–308
Shamans, Mystics, and Doctors (Kakar) 297–299
Shapiro, Alan 170–171
Shapsay, Sandra 154
Shattuck, Lemuel 65
Shaw, George Bernard 33
Shem, Samuel 201
SHHV (Society for Health and Human Values) 291–293, 340–343
Shi’a Muslims 306–308
Shippen, William Jr. 63–64
Shiva (Hindu Destroyer) 297–299
SHS-4 instrument, measurement of religion and health and 321–323
sickness. See disease; illness
Sigerist, Henry 22
signa mortifera, in death and dying 105, 106
Sims, J. Marion 268–270
Situation Ethics (Fletcher) 341–342
skepticism, on religion and health 324, 327–328
slavery
epidemic disease and 47, 93–94
grave robbing and 49–50
in Judaism 301–304
medical apartheid and 270–272
medical education and 58–59
medicine in antiquity and 27–29
politics of disease and 243–244
Sleeping (Bise) 83–84, 84f4
Sloan, Richard 324
smallpox
in antiquity 90–91
colonialism and 93–94
vaccine against 51
Smith, David 291–293, 294, 365–366
Smith, Maggie 142–143
Smith, William 63–64
Snow, John 95
social constructivism, goals of medicine and 226–229
social contract theory
access to health care and 285–286
bioethics and 257–259
social insurance
healthcare reform and 278–279
public health and 97–98
social research
history of medicine and 21, 23
justice and 277–278
pathography as 125–127
 power and medicine in 263–264
public health and 96–99
Social Security Act 98–99, 278–279
social workers, in hospitals 35
Society for Bioethics Consultation (SBC) 340–343
Society for Health and Human Values (SHHV) 291–293, 340–343
Society for Psychical Research 331–333
Society for the Right to Die 115–116
Someone Else (Shapiro) 170–171
The Sopranos (television show) 156
Sorajjakool, Siroj 297–299, 300–301
specialization in medicine
historical concerns over 35–36
humane care inhibited by 10
modern expansion of 36–38
palliative care in 233–234
technology’s influence on 81–84
Spielberg, Steven 163
Spike, Jeffrey 156
Spilka, Bernard 317
Spiritual Beliefs Inventory 321–323
Spiritual Well-Being Scale 321–323
spirituality.
See also religion
in Buddhism 300–301
clinical approaches to patient care and 308–310
components of spiritual care models 296
in Hinduism 297–299
measurements of impact on health of 321–323
medical humanities and 8–9, 291–293
patient care and 296
Spirituality and Patient Care (Koenig) 296, 315
spirometer 78
spygmometer 78
Stallone, Sylvester 145, 149–150
Starr, Paul 24, 277, 280
State Children’s Health Insurance Program (SCHIP) 414–415n12
state institutions, medical practice in 36–38
statistical norms, health assessment using 49–51
Stay of Execution (Alsop) 125–127
stereotyping.
See also race and racism
cultural competency and risk of 294–296
in photography 358–360
stethoscope, invention of 78
Stoicism, death and dying and 105–106
Stone, Deborah 283–285
Stone, John 203–204
Strauman, Elena 164–165
Streep, Meryl 145, 147
streptomycin, development of 52
structural racism, medical apartheid and 270–272
Styron, William 125, 128–130, 246–247, 333–336
subjectification
beauty and 264–266
knowledge and power and 264–266
subjective observation, medical technology and 78
suffering
in Buddhism 299–301
existential and spiritual issues 291–293
hope and 358–370
literature on 360–362
medical humanities and 375
monotheistic responses to 362–364
non-monotheistic responses to 364–365
pain vs. 9–10, 239
pastoral theology and 366–367
practical theodicies concerning 365–366
reasons for 362–367
religion and 330–331
Sullivan, Andrew 330–331
Sulmasy, Daniel 291–293, 294
sulpha drugs, development of 51
Sunnah in Islam 306–308
Sunni Muslims 306–308
supernatural revelation
early medical education and 58–59
epidemic disease and 93–94
surgery
doctor-writers on 186–188, 192–194
in early modern medicine 33–36
early technology in 75–78
human trait enhancement and 229–230
in Middle Ages 76–77
modern technology and advancement of 78–81
prayer during 315
Susruta Samhita, 75
Svenaeus, Fredrik 274
Sydenham, Thomas 60–63, 77–78
Symcotts, John 77–78
syphilis
penicillin and 52
in Renaissance 46–47
Tuskeegee Study of 52, 252–255, 272–273
Szasz, Thomas 245

“tame death,” medieval concept of 106–107

Taylor, Charles 215
Taylor, Jeremy 109–110
teaching, dominance in medical schools of 68–72
technology
benefits and limitations of 74–75
bioethics and 255–257
current and future trends in 85–87
death and dying and 111–117
early history of 75–78
Hindu beliefs concerning medicine and 297–299
humane care inhibited by 10
medicine and 74–87
modern medical technology, evolution of 78–81
twentieth-century advances in 81–84
television, medicine on 153–165
see also doctor show formula; see also specific show titles
Templeton Foundation 315
“The Tension between Progressive Bioethics and Religion” (Evans) 343,
353–355
Terri Schiavo case 353–355
Thatcher, Denis (Sir) 147
Thatcher, Margaret 147
theodicy
practical aspects of 365–366
suffering and 362–364
Theodore of Sykeon 44–46
theology.
See also religion
bioethics and 343–351
justice and 347–348
pastoral theology 366–367
suffering and 365–366
theorizing stories, illness narratives and 133
Theravada Buddhism 300–301
thermometer 78
Thessalius 58–59
“They Decide Who Lives, Who Dies” (Alexander) 252–255
thick description, cultural competency and 294–296
third-party payers, corporate transformation of American medicine and 36–38
Thomas Aquinas (St.) 304–306
Thomasma, David 8–9
Thornton, Helen 331–333
Thurneisser zun Thurn, Leonhart 41–44, 43f2
Tillich, Paul 358
The Time of Their Dying, 125–127
Tolstoy, Leo 110–111, 375–376
Tomes, Nancy 154
Tooley, Michael 347
Toombs, S. Kay 274
top-down reasoning, bioethics and 259
Topol, Eric 85–87
Toulmin, Stephen 213, 259–261, 340–343
Trachtman, Howard 156
transplants. See organ transplantation
Trautmann, Joanne 185
Treichler, Paule 154
Treno, Joan M. 233–234
trepanation, history of 75
Treponema pallidum, syphilis and 47
Trilling, Lionel 2–4, 398n7
triple contract theory, bioethics and 257–259
The Trip to Bountiful (film) 143–145, 149
Truman, Harry 279
tuberculosis
ancient Greek study of 41–44
childbirth and 79–80
global health and 99–102
streptomycin and 52
in twentieth century 51–53
Tuesdays with Morrie (film) 117
Türck, Ludwig 78
Turner, Leigh 291–293
Turow, Joseph 153, 157, 161–162, 163–164
Tuskeegee Syphilis Study 52, 252–255, 272–273
12 Angry Men (film) 142–143
Typa A/H1N1 virus 51–53
typhus
in antiquity 90–91
in Renaissance 46–47
typography, art of 175–176, 175f10

UDDA (Uniform Determination of Death Act) 114–115

The Uncertainty of the Signs of Death and the Dangers of Precipitate
Interments and Dissections, 109
Unforgiven (film) 149–151
Uniform Determination of Death Act (UDDA) 114–115
United Kingdom. See Great Britain
United States
 death and dying in 111–117
early medical education in 63–64
epidemics in 93–94
eugenics in 96–97
public health in 94–96, 98–99
reform of medical education in 65–68
technological development in 80–81
twentieth-century technological advances in 81–84
universities.
see specific universities, e.g. Michigan, University of
university-based medical education, emergence of 63–64
urban medicine, emergence in modern era of 36–38
urbanization
disease and 90
public health and 94–96
“Use of Force” (Williams) 184–185

vaccines, historical development of 50–51

valetudianarias (Roman infirmaries) 90–91
value-laden disease models 242–245
Van Calcar, Jan 60–63
The Varieties of Religious Experience (James) 314–316
vata (Hindu elements) 297–299
Vaux, Kenneth 341–342
Veatch, Robert 257–259, 341–342
Vedas (Hindu sacred writings) 297–299
vegetative state, death and dying and 114–115
Verstehen, knowledge theory and 215
Vesalius, Andreas 30–31, 48, 60–63, 62f3, 83–84, 117–119, 318–321
Vico, Giambattista 214
Viljanen, Anna Maria 8–9
Virchow, Rudolf 50, 53
virtue ethics, bioethics and 259
viruses, twentieth-century theories concerning 51–53
Vishnu (Hindu Preserver) 297–299
visual diagnosis, opthalmoscopy and 78
Von Helmholtz, Hermann 78
vulnerability and aging 145–147

Wakley, Thomas 95
Walters, LeRoy 341–342
Warner, John Harley 22, 24
Warnock, Mary 175
Washington, Harriet 270–272, 273–274
water supply and public health 90–91, 94–96
Watkins, Melanie 202
Watson, James 53
Wear, Delese 7–8
Webb, Sidney 96
Weber, Max 215
Weinberg, Richard 221–223
Welch, William 22, 66
Wells, John 163
Welsome, Eileen 270–272
Wertenbaker, Lael Tucker 125–127
What They Don’t Know (Cooperman) 173–175
Whatever Happened to Baby Jane (film) 142–143
When Faith Is Tested (Zurheide) 362–364
White Coat, Clenched Fist: The Political Education of an American
Physician, 200–201
WHO. See World Health Organization
whole-body standard for death 114–115
Wicclair, Mark 155–156
Wild Strawberries (film) 140–143, 141f8, 149
Williams, William Carlos 183–186, 186f11, 195
Wilson, J. L. 82–83
Winged Victory (De Staebler) 241f15
Winkler, Mary 123–124
Winslow, Jacque 109
wireless technology and medical practice 85–87
The Wire (television show) 156
women practitioners
barriers to medical education for 67–72,
exclusion in Middle Ages of 29–30
 Hindu preference for obstetric services by 299
women’s health.
See also feminist theory; gender; pregnancy and childbirth
access to care and 263–264
Daly’s feminist views on 268–270
gynecology, feminist perspectives on 268–270
pre-menstrual syndrome 54–55
underfunding of research on 274
Women’s Medical College of Pennsylvania 67–68
Women’s Rights Convention 268–270
World Health Organization (WHO) 237
global health and 101–102
health defined by 238–242, 249
writers, doctors as 183–195
Wundt, Wilhelm 317

x-ray machine, development of 80–81

xenones (hostels) 91–93

Yale University, medical education at 65–66

yellow fever epidemic
in Philadelphia 48
public health and 93–94
Yersinia pestis, bubonic plague and 45–46
yoga, in Hindu religious practice 297–299
youth, film and cult of 139–140

zakat (Islamic charity) 306–308

Zoloth, Laurie 291–293, 340
Zurheide, Jeffry 362–364