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Being Mortal: Medicine and What Matters in the End
Goodreads Choice Award
Nominee for Readers' Favorite Nonfiction (2014)In Being Mortal, author Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending
Medicine has triumphed in modern times, transforming birth, injury, and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death, the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying, checking for vital signs long after the goals of cure have become moot. Doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.
Gawande, a practicing surgeon, addresses his profession's ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified.
Medicine has triumphed in modern times, transforming birth, injury, and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death, the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying, checking for vital signs long after the goals of cure have become moot. Doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.
Gawande, a practicing surgeon, addresses his profession's ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified.
282 pages, Hardcover
First published October 7, 2014
About the author
Atul Gawande
28 books5,740 followersAtul Atmaram Gawande is an American surgeon, writer, and public health researcher. He practices general and endocrine surgery at Brigham and Women's Hospital in Boston, Massachusetts. He is a professor in the Department of Health Policy and Management at the Harvard T.H. Chan School of Public Health and the Samuel O. Thier Professor of Surgery at Harvard Medical School. In public health, he was the chairman of Ariadne Labs, a joint center for health systems innovation, and chairman of Lifebox, a nonprofit that works on reducing deaths in surgery globally. On June 20, 2018, Gawande was named the CEO of healthcare venture Haven, owned by Amazon, Berkshire Hathaway, and JP Morgan Chase and stepped down as CEO in May 2020, remaining as executive chairman while the organization sought a new CEO.
He is the author of the books Complications: A Surgeon's Notes on an Imperfect Science; Better: A Surgeon's Notes on Performance; The Checklist Manifesto; and Being Mortal: Medicine and What Matters in the End.
On November 9, 2020, he was named a member of President-elect Joe Biden's COVID-19 Advisory Board. On December 17, 2021, he was confirmed as the Assistant Administrator of the United States Agency for International Development, and he was sworn in on January 4, 2022.
He is the author of the books Complications: A Surgeon's Notes on an Imperfect Science; Better: A Surgeon's Notes on Performance; The Checklist Manifesto; and Being Mortal: Medicine and What Matters in the End.
On November 9, 2020, he was named a member of President-elect Joe Biden's COVID-19 Advisory Board. On December 17, 2021, he was confirmed as the Assistant Administrator of the United States Agency for International Development, and he was sworn in on January 4, 2022.
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February 16, 2023
(Added a link - 4/18/15 - at bottom)
Atul Gawande - photo by Aubrey Calo – From Gawande’s site
What we have today is the medicalization of old age. It has not always been thus. Instead of embracing the circle of life, we have bent and twisted it until it looks like a Möbius strip. Facing the fact that we are all going to die is certainly not a fun notion, but neither is believing we can extend our so-called lives indefinitely. There really is such a thing as quality of life, and probably should be a thing called quality of death as well.
The percentage of the population that is elderly is rising dramatically as boomers enter their (our) golden years. So how is the medical profession preparing to meet the booming demand for geriatric care? With the same gusto as a Republican legislature faced with a crumbling infrastructure. They are cutting back. I picture a cinematic bandit with a white coat under his bandolier, "We doan need no steenking geriatricians." The reality is not far from this.
Being Mortal looks at trends in the impact of using all available means to keep people alive, and how that affects someone’s final days. When is the right time to stop treatment? How much is too much? When is the right time to die? It used to be that, when it was time, one’s final days were spent at home, with family. These days, they are likelier to be spent in an institution of some sort, and as likely as not, entail the patient being hooked up to sundry tubes, wires and flashing, beeping devices. It is important to identify exactly what it is that a person wants, or fears most, as a basis for decision-making. If your needs are minimal it speaks to one set of decisions. If your needs are more substantial, it speaks to another. One person said that as long as he could watch football and eat chocolate ice cream, life would be worth living. (There is no way he is a Jets fan) Others have a more extensive list of must-haves in order to make life worth living. It does lead one to consider what your list might include. For me, watching baseball would definitely figure in. Being able to read and write, to communicate would be necessary. What if you couldn't clean yourself? What if you could only have food through tubes? How much pain could you live with, and what measures would be acceptable to ameliorate it? What would keeping me alive cost? And how much is too much? All these questions figure into deciding the appropriate level of care. One fascinating section here had to do with hospice care, which need not take place in a hospice building. That was news to me. And it is a revelation how such care impacts patients.
One of the significant points of the book is that planning is paramount. Have those difficult conversations. Talk about what you want for yourself, if your care is at issue, or what your parent/friend/spouse/relation wants well before one is in a crisis situation. It may be uncomfortable, but it is hugely important. In fact, this book is hugely important.
Being Mortal offers not just a fascinating look at the history of late life care and living options, it not only offers a review of what is happening out there in the field of facilities for the frail and in the theories of how to approach late life care, it not only offers sage advice on planning for eventualities that we must all face sooner or later, it does all these things with humor and clarity, the bookish equivalent of an excellent bed-side manner. It is a fast read, too, useful if time is short. I would strongly suggest adding Gawande’s book to your bucket list, before…you know… it gets kicked. This is must-read stuff.
Published – 10/7/2014
Review first posted – 2/13/15
=============================EXTRA STUFF
Links to the author’s personal, Twitter and FB pages
The book was the basis for a Frontline episode, which is excellent
Here are the articles Gawande wrote as a New Yorker staff writer
An interview with Gawande from Modern Health Care
Interview in Mother Jones magazine
4/18/15 - GR friend Vaidya sent along a link to a wonderful January 2015 NY Times opinion piece by Tim Kreider, You Are Going to Die, on facing what lies ahead. Worth a look. Thanks, V.
5/3/15 - An interesting Op-Ed on futility care
January 23, 2017 - The New Yorker Magazine - Gawande article on the benefits of investment in incremental care in light of investments in heroic intervention - interesting stuff - The Heroism of Incremental Care (The title in the print magazine was Tell Me Where It Hurts)
January 3, 2020 - an update on the state of growth (or lack of same) in the field of geriatricics - Older People Need Geriatricians. Where Will They Come From? - by Paula Span
In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die.Being Mortal is completely irrelevant for any readers who do not have elderly relations, do not know anyone who is old or in failing health, and do not themselves expect to become old. Otherwise, this is must-read stuff. Life may be a journey, but all our roads, however long or short, whether express, local or HOV, whether traversed by foot, burro, bus, SUV, monster truck or Star Trek transporter, converge on the same destination, and the quality of those last few miles is something we should all be concerned about.
Old age is not a battle. Old age is a massacre.Atul Gawande, as a doctor, has had considerable exposure to issues of death and dying, but when his father was diagnosed with brain cancer, Gawande was motivated to look into how end of life care was being handled across the board. Being Mortal is the distillation of what he learned.
Atul Gawande - photo by Aubrey Calo – From Gawande’s site
What we have today is the medicalization of old age. It has not always been thus. Instead of embracing the circle of life, we have bent and twisted it until it looks like a Möbius strip. Facing the fact that we are all going to die is certainly not a fun notion, but neither is believing we can extend our so-called lives indefinitely. There really is such a thing as quality of life, and probably should be a thing called quality of death as well.
… hope is not a plan, and in fact we find from our trials that we are literally inflicting therapies on people that shorten their lives and increase their suffering, out of an inability to come to good decisions. - Gawande - from the Frontline segmentPeople have priorities besides just living longer.
The percentage of the population that is elderly is rising dramatically as boomers enter their (our) golden years. So how is the medical profession preparing to meet the booming demand for geriatric care? With the same gusto as a Republican legislature faced with a crumbling infrastructure. They are cutting back. I picture a cinematic bandit with a white coat under his bandolier, "We doan need no steenking geriatricians." The reality is not far from this.
Although the elderly population is growing rapidly, the number of certified geriatricians the medical profession has put in practice has actually fallen in the United States by 25 percent between 1996 and 2010...Partly, this has to do with money--incomes in geriatrics and adult primary care are among the lowest in medicine. And partly, whether we admit it or not, a lot of doctors don’t like taking care of the elderly.Gawande tracks the history of late-life care from the poorhouse to the hospital to the nursing home to the range of options currently available, providing information of the benefits and shortfalls of each. Assisted care comes in for a lot of attention.
policy planners assumed that establishing a pension system would end poorhouses, but the problem did not go away. In America, in the years following the passage of the Social Security Act of 1935, the number of elderly in poorhouses refused to drop. States moved to close them but found they could not. The reason old people wound up in poorhouses, it turned out, was not just that they didn’t have money to pay for a home. They were there because they’d become too frail, sick, feeble, senile, or broken down to take care of themselves anymore, and they had nowhere else to turn for help. Pensions provided a way of allowing the elderly to manage independently as long as possible in their retirement years. But pensions hadn’t provided a plan for that final, infirm stage of mortal life.There comes a point at which one passes from being elderly to being frail and the range of options narrows. Gawande asks, “What does it mean to be good at taking care of people whose problems we cannot fix?” When does the need for safety leap past a person’s need for independence? There are various levels of care offered at different sorts of facilities. Some people can remain at home for a long time if they have a bit of help. Nursing homes are heavily medical, assisted care facilities more independence oriented. And there are plenty of variations on each. Gawande looks at several variations on assisted living facilities, noting the strengths and weaknesses. I found this extremely interesting. He also looks at some techniques that can make assisted living more tolerable, adding flora and fauna for residents to take care of for example, things like different sorts of physical layouts. One of these reminded me very much of my daughter’s erstwhile college dorm setup. Point being that there is a spectrum and beginning from understanding the patient/resident needs and desires in the context of physical and medical limitations can inform the choices to be made. All too often these decisions are made without considering the impact on or getting input from the person most affected.
Being Mortal looks at trends in the impact of using all available means to keep people alive, and how that affects someone’s final days. When is the right time to stop treatment? How much is too much? When is the right time to die? It used to be that, when it was time, one’s final days were spent at home, with family. These days, they are likelier to be spent in an institution of some sort, and as likely as not, entail the patient being hooked up to sundry tubes, wires and flashing, beeping devices. It is important to identify exactly what it is that a person wants, or fears most, as a basis for decision-making. If your needs are minimal it speaks to one set of decisions. If your needs are more substantial, it speaks to another. One person said that as long as he could watch football and eat chocolate ice cream, life would be worth living. (There is no way he is a Jets fan) Others have a more extensive list of must-haves in order to make life worth living. It does lead one to consider what your list might include. For me, watching baseball would definitely figure in. Being able to read and write, to communicate would be necessary. What if you couldn't clean yourself? What if you could only have food through tubes? How much pain could you live with, and what measures would be acceptable to ameliorate it? What would keeping me alive cost? And how much is too much? All these questions figure into deciding the appropriate level of care. One fascinating section here had to do with hospice care, which need not take place in a hospice building. That was news to me. And it is a revelation how such care impacts patients.
One of the significant points of the book is that planning is paramount. Have those difficult conversations. Talk about what you want for yourself, if your care is at issue, or what your parent/friend/spouse/relation wants well before one is in a crisis situation. It may be uncomfortable, but it is hugely important. In fact, this book is hugely important.
Being Mortal offers not just a fascinating look at the history of late life care and living options, it not only offers a review of what is happening out there in the field of facilities for the frail and in the theories of how to approach late life care, it not only offers sage advice on planning for eventualities that we must all face sooner or later, it does all these things with humor and clarity, the bookish equivalent of an excellent bed-side manner. It is a fast read, too, useful if time is short. I would strongly suggest adding Gawande’s book to your bucket list, before…you know… it gets kicked. This is must-read stuff.
Published – 10/7/2014
Review first posted – 2/13/15
=============================EXTRA STUFF
Links to the author’s personal, Twitter and FB pages
The book was the basis for a Frontline episode, which is excellent
Here are the articles Gawande wrote as a New Yorker staff writer
An interview with Gawande from Modern Health Care
Interview in Mother Jones magazine
4/18/15 - GR friend Vaidya sent along a link to a wonderful January 2015 NY Times opinion piece by Tim Kreider, You Are Going to Die, on facing what lies ahead. Worth a look. Thanks, V.
5/3/15 - An interesting Op-Ed on futility care
January 23, 2017 - The New Yorker Magazine - Gawande article on the benefits of investment in incremental care in light of investments in heroic intervention - interesting stuff - The Heroism of Incremental Care (The title in the print magazine was Tell Me Where It Hurts)
January 3, 2020 - an update on the state of growth (or lack of same) in the field of geriatricics - Older People Need Geriatricians. Where Will They Come From? - by Paula Span
December 29, 2019
This is going to be a very short review. I just simply say:
If you think you might get older as time goes by and/or think you might even die at some time (or have relatives or other loved ones to whom this might apply), I urge you to read this book. And if you happen to be over 50 (or care about someone over 50), read this book now.--You heard me. I said NOW!
For more detailed evaluations and descriptions of this book, I recommend to read the following reviews:
Will Byrnes's review: https://www.goodreads.com/review/show...
Cheryl's review: https://www.goodreads.com/review/show...
Michael's review: https://www.goodreads.com/review/show...
Debbie "DJ" Wilson's review: https://www.goodreads.com/review/show...
Rebecca Foster's review: https://www.goodreads.com/review/show...
Elyse's review: https://www.goodreads.com/review/show...
Laura Leaney's review: https://www.goodreads.com/review/show...
Correen's review: https://www.goodreads.com/review/show...
James Barker's review:
https://www.goodreads.com/review/show...
HBalikov's review:
https://www.goodreads.com/review/show...
Mary's review:
https://www.goodreads.com/review/show...
If you think you might get older as time goes by and/or think you might even die at some time (or have relatives or other loved ones to whom this might apply), I urge you to read this book. And if you happen to be over 50 (or care about someone over 50), read this book now.--You heard me. I said NOW!
For more detailed evaluations and descriptions of this book, I recommend to read the following reviews:
Will Byrnes's review: https://www.goodreads.com/review/show...
Cheryl's review: https://www.goodreads.com/review/show...
Michael's review: https://www.goodreads.com/review/show...
Debbie "DJ" Wilson's review: https://www.goodreads.com/review/show...
Rebecca Foster's review: https://www.goodreads.com/review/show...
Elyse's review: https://www.goodreads.com/review/show...
Laura Leaney's review: https://www.goodreads.com/review/show...
Correen's review: https://www.goodreads.com/review/show...
James Barker's review:
https://www.goodreads.com/review/show...
HBalikov's review:
https://www.goodreads.com/review/show...
Mary's review:
https://www.goodreads.com/review/show...
October 27, 2017
10/27/17 The most remarkable discussion of this book takes place between Atul Gawande and Kristin Tippett in the 10/26/17 podcast posted on the OnBeing website. In the discussion we learn that Gawande went to medicine through politics which may not surprise some of you. I had a radical insight as I listened: that doctors, by oath, are meant to provide life-giving care to rich and poor alike, without discrimination. Does that lead almost directly to the discussion about whether healthcare is a right? You would think doctors, in that case, would be liberal to a person. That they are not means there is a skew in the process somewhere--possibly in the numbers of doctors the AMA allows to be certified.
------------------------------
My great aunt lived to be 102 years old. She would often say, looking at the younger generations, "It’s wonderful to get old." Gawande touches on this in his memoir chronicling the death of his father and in his discussion of dying well. Older folks have more moments they classify as happy than do younger folks. Oldsters generally experience less anxiety, too, perhaps from having “seen it all before,” but perhaps also because they know bad times do pass. Usually.
I still think my great aunt was being just a little facetious, since the rest of Gawande’s book tells us pretty explicitly that old age is not for wimps. In fact, as Elizabeth Gilbert suggested in her novel The Signature of All Things, we do better when we turn towards “the great changes that life brings” rather than turn our wills away. Gawande tells us how it is possible in some cases to choose less treatment rather than more when faced with life-threatening illness and experience a better quality of life in our final days.
This is pretty grim stuff but Gawande is graceful, as graceful as he can be when the choices are so limited and so frankly horrible. When a loved one (or we ourselves) must make choices, it is wise, he counsels, to ask ourselves a few questions: What do we fear most? What do we want most to be able to do? What can/can’t we live without? What will we sacrifice so that we can accomplish what it is we want? Our choices may change as circumstances change, so one has to revisit occasionally, to make sure we (and our family and our doctors) are proceeding along the path we have chosen for ourselves.
It is almost, but perhaps not quite, enough to make one wish for a sudden, early death. We all must go through it, so we’re not alone. It’s just that medical knowledge, technology, and skill can do only so much, and after that we still have to face the inevitable. Gawande gives lots of examples of patients and of people he has known who have these choices thrust upon them. On balance, he concludes, those who accept, rather than thoughtlessly fight, a terminal prognosis have a better death.
This book is worth reading, maybe more so before you need it. Filling out the hospital’s required “health care directive” is actually difficult unless you have someone like this to explain what it actually means. No intervention may mean weeks instead of months; it may also mean calm instead of recovering from radical surgery. It may just be unbearably depressing. I get that.
One interesting study Gawande talks about is one in which people who know their time horizons are short, or who experience life-threatening conditions (e.g., living in a war zone, 9/11, surviving a tsunami) change their view of what they want out of life, their "hierarchy of needs" as defined by Maslow. People with unlimited horizons put a high premium on growth and meeting people who are interesting and influential. Those with foreshortened horizons look to their closest friends and family for sustenance and comfort. War zones may not grant you friends or family, but certainly intense, highly-charged, and memorable relationships result from them. Little is expected, much is granted. And I guess that is key. There is more generosity to go around when one is in the final days and it may be best not to occlude that blessing with a confusion of treatments that do not mean a better life.
Gawande addresses some of the most difficult questions we have to decide in a lifetime. It is not easy to read. But it helps, I think, to know what choices we can make when the time comes for someone we love or for ourselves.
---------------------------------------------
Months later.
I have been thinking about the first quote I put at the beginning of my review since I read it. I wonder if that is not quite right. It is not mortality that is a horror if one is not part of a larger group. It is life itself.
------------------------------
"The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror."
My great aunt lived to be 102 years old. She would often say, looking at the younger generations, "It’s wonderful to get old." Gawande touches on this in his memoir chronicling the death of his father and in his discussion of dying well. Older folks have more moments they classify as happy than do younger folks. Oldsters generally experience less anxiety, too, perhaps from having “seen it all before,” but perhaps also because they know bad times do pass. Usually.
I still think my great aunt was being just a little facetious, since the rest of Gawande’s book tells us pretty explicitly that old age is not for wimps. In fact, as Elizabeth Gilbert suggested in her novel The Signature of All Things, we do better when we turn towards “the great changes that life brings” rather than turn our wills away. Gawande tells us how it is possible in some cases to choose less treatment rather than more when faced with life-threatening illness and experience a better quality of life in our final days.
This is pretty grim stuff but Gawande is graceful, as graceful as he can be when the choices are so limited and so frankly horrible. When a loved one (or we ourselves) must make choices, it is wise, he counsels, to ask ourselves a few questions: What do we fear most? What do we want most to be able to do? What can/can’t we live without? What will we sacrifice so that we can accomplish what it is we want? Our choices may change as circumstances change, so one has to revisit occasionally, to make sure we (and our family and our doctors) are proceeding along the path we have chosen for ourselves.
It is almost, but perhaps not quite, enough to make one wish for a sudden, early death. We all must go through it, so we’re not alone. It’s just that medical knowledge, technology, and skill can do only so much, and after that we still have to face the inevitable. Gawande gives lots of examples of patients and of people he has known who have these choices thrust upon them. On balance, he concludes, those who accept, rather than thoughtlessly fight, a terminal prognosis have a better death.
This book is worth reading, maybe more so before you need it. Filling out the hospital’s required “health care directive” is actually difficult unless you have someone like this to explain what it actually means. No intervention may mean weeks instead of months; it may also mean calm instead of recovering from radical surgery. It may just be unbearably depressing. I get that.
One interesting study Gawande talks about is one in which people who know their time horizons are short, or who experience life-threatening conditions (e.g., living in a war zone, 9/11, surviving a tsunami) change their view of what they want out of life, their "hierarchy of needs" as defined by Maslow. People with unlimited horizons put a high premium on growth and meeting people who are interesting and influential. Those with foreshortened horizons look to their closest friends and family for sustenance and comfort. War zones may not grant you friends or family, but certainly intense, highly-charged, and memorable relationships result from them. Little is expected, much is granted. And I guess that is key. There is more generosity to go around when one is in the final days and it may be best not to occlude that blessing with a confusion of treatments that do not mean a better life.
Gawande addresses some of the most difficult questions we have to decide in a lifetime. It is not easy to read. But it helps, I think, to know what choices we can make when the time comes for someone we love or for ourselves.
---------------------------------------------
Months later.
I have been thinking about the first quote I put at the beginning of my review since I read it. I wonder if that is not quite right. It is not mortality that is a horror if one is not part of a larger group. It is life itself.
January 11, 2025
I read this book a fortnight ago, by my brother's bedside, at a time when both he and I knew he was dying. Any book one reads in such a situation has to be absorbing, perceptive and worth the read. This one was; it was both relevant and pertinent. I read it all.
"We know less and less about our patients but more and more about science."
The author of Being Mortal: Medicine and What Matters in the End is Atul Gawande. He is an eminent American surgeon and author, who conducts research into public health issues. A careful and sensitive analyst, Atul Gawande is often included in lists of top global thinkers. He has delivered Reith Lectures, held the position of director of the World Health Organisation's effort to reduce surgical deaths, and been named a Fellow for his work in investigating and articulating modern surgical practices and medical ethics. His background is partly American, partly Indian, as his parents - both also doctors - followed the Hindu religion. The family were originally Marathi people from the Maharashtra region of India. As a child however, Atul Gawande lived in Athens, Ohio, and studied at Stanford University, then read PPE (Philosophy, Politics and Economics) at Balliol College Oxford, and then did a further degree and Masters degree at Harvard Medical school. Thus both his cultural and educational background provide a diversity of approaches and in-depth knowledge for deciding issues of medical ethics.
Near the very start of the book, Gawande points out that our ideas about death, and the desirability of both aging and the dying experience to be somehow controllable under a medical regime, is a very recent Western phenomenon. In India and many other countries, for time immemorial, it has been accepted that an elderly person is valued and cared for by their family, for the whole of their life.
"In the past surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge and history. They tended to maintain their status and authority as heads of the household until death. In many societies elders not only commanded respect and obedience but also led sacred rites and wielded political power."
This line of action is not therefore pursued with any sense of condescension, duty or even simple kindness by the young. Rather it is just the way things are; it is a tradition of respect. Conversely to the modern Western ideal, the elderly held supreme power until they died, sometimes preventing younger family members from achieving what they wished, and perhaps resulting in great frustration. But they were the wise elders, they held ultimate control. Gawande gives an example of his grandfather, who rode around his property on horseback every day even after he was a hundred years old, to check that everything was in order. A modern view would hold that this was a reckless and foolish activity for someone so frail. Yet this tiny man in fragile health had all his mental faculties intact, and ruled his family in the same way he always had. The difference in perceptions is startling, and also pertains to highly developed countries,
"Whereas today people often understate their age to census takers, studies of past censuses have revealed that they used to overstate it. The dignity of old age was something to which everyone aspired."
Atul Gawande gives many such examples from his own childhood and early experience, plus a recent overview of how different countries have begun to change their perceptions, not always with good results. Invariably, extending life through medicine is seen to be progress, and often implemented too quickly. Scholars have identified the three stages of medical development which countries go through, which parallel their economic development. In extreme poverty most deaths occur in the home, as people do not have access to any professional help. As a country's economy improves and incomes rise, people begin to turn to health care systems and as a result often die in hospitals. But in the third stage, when incomes rise to their highest levels, people have the ability to become interested in the quality of their lives, and ironically choose to die at home.
Yet medical intervention and treatment so often gets stuck at the second stage. This may result in people's actual choices being impaired, and decisions made without the full knowledge or understanding by all involved. This theme is part of the main thrust of the book.
The author also approaches this ethical conundrum from the other end. He examines what has happened in recent years in the USA in particular, and how the medical establishment has completely monopolised the business of dying, to the extent that earlier long-established ideas and principles common to all humans, are now never even considered. He bravely cites himself as a culprit, detailing how it took him quite a few years as a practising surgeon, to begin to question whether he had the right to ride roughshod over other approaches to the question, "What matters in the end? How can we ensure that an individual really achieves what they want at the end of their life?" Had he made the cardinal error of surgeons; that of being so committed to extending life, that he continued to carry out procedures that in actuality extended suffering, rather than enhancing life itself?
Atul Gawande gives both examples from his medical experience, plus many examples where he has investigated and interviewed those involved. The text is heavy with anecdotes and stories which illustrate his points well, making extremely interesting and accessible reading. It is not always easy to read this sorry catalogue of clinical and domestic details, however, despite Gawande's flowing prose. So often the "experts'" best intentions are frustrated. So often people are provided with choices but not given the information which is most helpful. So often people do not yet know the questions which they should ask; those which would serve them best. The legal phrase, "the truth, the whole truth, and nothing but the truth" springs to mind. Clinicians, and those assessing care for the elderly, may well answer the questions posed. But the answers, particularly those given by doctors, if not understood in their full context, often prove to be misleading and extremely damaging for the lifestyle of the person asking. It is important to distinguish between "person", and "patient" here. Not everything can, or should, be "fixed" and made well.
"We make it possible for them to make it home - weaker and more impaired, though. They never return to their previous baseline."
We are human, not immortal. Dying is a natural, inevitable consequent of living. This sometimes tends to be forgotten. For example, sometimes a person in their desire to be healthy, do not properly understand that a certain operation may be extremely difficult and painful, and that at best it can only provide temporary relief; that they can never achieve the previous physical state which they desire.
"the people who opt for these treatments aren't thinking a few added months. They're thinking years. They're thinking at least they're getting that lottery ticket's chance that their disease might not even be a problem any more."
"Ninety-nine per cent understand they're dying, but one hundred per cent hope they're not ... They still want to beat their disease."
Some people may live longer without an operation. If they are offered careful specialist help to make it the sort of life they would enjoy, they might possibly then choose this option. Even if an operation can extend their life, the quality of life afterwards may not be fully explored, before a decision to commit to the operation is made. In other cases the individuals are not elderly, but merely people who have serious enough conditions to be judged as close to the end of their life. Or perhaps the people are elderly, but not suffering especially from any serious condition, but just "gradually falling apart", as one doctor says. Atul Gawande describes one resident of a care home, who displays a common feeling the elderly have,
"she didn't really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport. With her home went her control ... How did we wind up in a world where the only choices for the old seem to be either going down with the volcano or yielding all control over our lives?"
He carefully catalogues the development of various types of care homes and hospices, pointing out in which way they are successful, and how they can also be more akin to prisons. He observes,
"The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book "Asylums""
And in the current case study mentioned,
"All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lived with whomever they said she had to."
Such instances are often a result of legal rules; a standardised demand to meet prescribed standards of hygiene and safety. These are designed to protect the people in such care homes, but in fact only increase their institutionalisation, their feeling that they are living,
"A life designed to be safe but empty of anything they care about."
People denied individuality will either give in apathetically, or resist in any way they can, thereby risking appearing ridiculous to those in charge,
"Nursing home staff like, and approve of, residents who are "fighters" and show "dignity and self-esteem" - until these traits interfere with the staff's priorities for them. Then they are "feisty" ... non-cooperation - refusing the scheduled activities or medications. It's a favourite word for the aged."
The author also examines instances where elderly relatives live with their children, which often seems to be seen as a gold standard of care. Yet even when this has been a mutually agreed wish on both sides, he shows that all too frequently it has not really worked out for any individuals involved.
Atul Gawande does not shy away from difficult issues. He briefly enters the debate about assisted dying (also termed "assisted suicide" or "death with dignity") which is legal in countries such as the Netherlands, Belgium and Switzerland, and certain states in the US such as Oregon, Washington and Vermont. But by far the main part of this second half is concerned with the various ways of assisting people to have the old age they would themselves choose, whether in their own adapted home with help, or by moving to a wider community such as an assisted living facility, or
"something of an intermediate station between independent living and life in a nursing home."
He points out that it is a long road,
"there are costs to averting our eyes from the realities. We put off dealing with the adaptations that we need to make as a society. And we blind ourselves to the opportunities that exist to change the individual experience of aging for the better,"
And he charts all the progress made since the 1980's when Keren Brown Wilson, who initially had the concept, first built her home for the aged in Oregon, where they could live with freedom and autonomy, however limited they became by their physical deterioration.
"The key word in her mind was "home". Home is the one place where your own priorities hold sway."
"People can't stop the aging of their bodies, but there are ways to make it more manageable and to avert at least some of the worst effects."
The psychologist Laura Carstensen studied the emotional experiences of a large number of people from a variety of backgrounds and ages over many years. She called her resulting hypothesis the "socioemotional selectivity theory". In essence this derives from the interesting conclusion that how we choose to spend our time depends on how much time we perceive ourselves to have.
"When life's fragility is primed, people's goals and motives in their everyday lives shift completely. It's perspective, not age, that matters most."
Once this has been taken on board, it becomes clear that nobody can accurately prescribe for another, which activities they will choose to follow in extreme old age. Too often assumptions are made about what "old people" will like, and in each individual case, this may not be anywhere near the truth.
In addition there is the temptation to over-protect,
"Many of the things we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self."
My favourite anecdote from this book is that of Bill Thomas. He was a working class boy who had surprised everybody by going to Harvard Medical school. He worked as a doctor, but was also committed to a self-sustaining lifestyle, growing his own food and using solar and wind power on his homestead. He eventually accepted a position as head of a nursing home because he believed it would give him more time to develop this side of his life, rather than continuing as an Accident and Emergency hospital doctor. Yet he quickly identified the mistaken thinking behind any nursing home's regime, describing "Three Plagues" of nursing home existence - boredom, loneliness and helplessness. His solution, which succeeded beyond anyone's expectations, seems both ludicrous and frivolous in the extreme. He introduced two dogs, four cats and a hundred parakeets into the home; not gradually but all at once, in a chaotic mix where residents and staff alike had to think on their feet. It is extraordinary that he ever managed to get the plans approved by the various authorities! And it is even more startling that the idea was such a phenomenal success. He said to the author that,
"Habit and expectations had made institutional routines and safety greater priorities than living a good life and had prevented the nursing home from successfully bringing in even one dog to live with the residents."
Atul Gawande's description of the episode is a delight from start to finish, pointing up the human components throughout, the stupefaction, the clueless, bumbling incompetence, the lack of experience - but ultimately the teamwork, laughter and joy in life which resulted from this simple ploy where someone just thought outside the box for a moment.
"the effect on residents soon became impossible to ignore: the residents began to wake up and come to life ... The lights turned back on in people's eyes."
There is a fundamental need in humans for a reason to live. In the early 1970's two psychologists, Judith Rodin and Ellen Langer did a study on the difference in a nursing home between residents who were given a plant to care for, and those who were not. The difference was marked. Even such a small responsibility as caring for a plant had a measurable difference in quality of life, with residents becoming more active and alert and living longer.
"the lesson seems almost Zen: you live longer only when you stop trying to live longer."
Gawande concludes,
"Medicine's focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul."
He identifies the three types of doctor. Isolating these types I could immediately assign doctors and surgeons of my own experience to the relevant category.
The first is a "paternalistic" approach, where the doctor is a medical authority who is trying to ensure that the patient has the treatment which the doctor believes is the best for them. This is a traditional approach, and there are still quite a few doctors around who act this way.
The second is almost its opposite; Atul Gawande terms it an "informative" approach. The doctor tells the patient the facts and figures. The rest is up to the patient to decide. This is quite a common approach nowadays.
The third approach is arguably by far the best. In this the patient would have all the relevant information, but also much-needed guidance. This is termed an "interpretative" doctor-patient relationship, or "shared decision-making". The key is to determine what is important to the patient. A good question for a doctor to ask would therefore be, "What is important to you? What are you most worried about?" When this is made explicit, the way forward to which facts and figures would be most helpful, and thus the way to proceed, may be a lot clearer. I can personally remember instances where I have been happiest with medical matters, both for myself and for my loved ones, and in each case I would say that the professionals involved were using this "interpretative" technique.
Much of this book is relevant, whatever country you are living in, although many of the examples given of hospices are those in the US. There is ground-breaking work being done in this area, particularly regarding assisted living and ways of assessing what people want and need at the end of their life. It has to be said though, that as I was reading the book, I was heartily glad that I live in the UK, a country with - at the moment - a superlative health service. I have to now qualify this statement, as many professionals involved make it abundantly clear that the service is crumbling. Paramedics, nurses and doctors, have all relayed statistics to me recently which mean that on paper, with the current cutbacks, things just should not work. Yet because of individuals' compassion, dedication to the job, hard work and determination, they do, at the moment. Things are on a knife-edge.
I was relieved that my brother was not a statistic in a book such as this. That we - with assistance from the professionals - had been able to give him the ending to his life which, although it had come too early, was the one he desired. He was able to spend some time in a hospice, a good one too, and from there be sent home to his wonderful sea view, and continue to have dedicated hospice care at home. I was relieved that although he could take no food, and ultimately refused tube feed, the way he decided the end of his life was totally under his control. At every stage he had the choice. He was given oxygen, hydration and painkillers when required to relieve suffering. All his care was extremely kind and respectful, and he died a dignified death. According to everything I read in this book, we got it right.
My brother, after successful treatment for a virulent cancer, had been actively involved on the board of the Royal Marsden - a famous London Cancer Hospital. He had also been on the committee of the Royal College of Surgeons, before his final illness. And when he saw me reading Being Mortal: Medicine and What Matters in the End, knowing of the author's work, and at the tail end of his life with only days to live, he smilingly approved.
Atul Gawande is a caring, compassionate, respectful and intelligent person. Long may he continue his reflections, research, investigations - and continue writing these important books.
"Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength."
"All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties."
"I hope to face the end calmly and in my own way."
"We know less and less about our patients but more and more about science."
The author of Being Mortal: Medicine and What Matters in the End is Atul Gawande. He is an eminent American surgeon and author, who conducts research into public health issues. A careful and sensitive analyst, Atul Gawande is often included in lists of top global thinkers. He has delivered Reith Lectures, held the position of director of the World Health Organisation's effort to reduce surgical deaths, and been named a Fellow for his work in investigating and articulating modern surgical practices and medical ethics. His background is partly American, partly Indian, as his parents - both also doctors - followed the Hindu religion. The family were originally Marathi people from the Maharashtra region of India. As a child however, Atul Gawande lived in Athens, Ohio, and studied at Stanford University, then read PPE (Philosophy, Politics and Economics) at Balliol College Oxford, and then did a further degree and Masters degree at Harvard Medical school. Thus both his cultural and educational background provide a diversity of approaches and in-depth knowledge for deciding issues of medical ethics.
Near the very start of the book, Gawande points out that our ideas about death, and the desirability of both aging and the dying experience to be somehow controllable under a medical regime, is a very recent Western phenomenon. In India and many other countries, for time immemorial, it has been accepted that an elderly person is valued and cared for by their family, for the whole of their life.
"In the past surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge and history. They tended to maintain their status and authority as heads of the household until death. In many societies elders not only commanded respect and obedience but also led sacred rites and wielded political power."
This line of action is not therefore pursued with any sense of condescension, duty or even simple kindness by the young. Rather it is just the way things are; it is a tradition of respect. Conversely to the modern Western ideal, the elderly held supreme power until they died, sometimes preventing younger family members from achieving what they wished, and perhaps resulting in great frustration. But they were the wise elders, they held ultimate control. Gawande gives an example of his grandfather, who rode around his property on horseback every day even after he was a hundred years old, to check that everything was in order. A modern view would hold that this was a reckless and foolish activity for someone so frail. Yet this tiny man in fragile health had all his mental faculties intact, and ruled his family in the same way he always had. The difference in perceptions is startling, and also pertains to highly developed countries,
"Whereas today people often understate their age to census takers, studies of past censuses have revealed that they used to overstate it. The dignity of old age was something to which everyone aspired."
Atul Gawande gives many such examples from his own childhood and early experience, plus a recent overview of how different countries have begun to change their perceptions, not always with good results. Invariably, extending life through medicine is seen to be progress, and often implemented too quickly. Scholars have identified the three stages of medical development which countries go through, which parallel their economic development. In extreme poverty most deaths occur in the home, as people do not have access to any professional help. As a country's economy improves and incomes rise, people begin to turn to health care systems and as a result often die in hospitals. But in the third stage, when incomes rise to their highest levels, people have the ability to become interested in the quality of their lives, and ironically choose to die at home.
Yet medical intervention and treatment so often gets stuck at the second stage. This may result in people's actual choices being impaired, and decisions made without the full knowledge or understanding by all involved. This theme is part of the main thrust of the book.
The author also approaches this ethical conundrum from the other end. He examines what has happened in recent years in the USA in particular, and how the medical establishment has completely monopolised the business of dying, to the extent that earlier long-established ideas and principles common to all humans, are now never even considered. He bravely cites himself as a culprit, detailing how it took him quite a few years as a practising surgeon, to begin to question whether he had the right to ride roughshod over other approaches to the question, "What matters in the end? How can we ensure that an individual really achieves what they want at the end of their life?" Had he made the cardinal error of surgeons; that of being so committed to extending life, that he continued to carry out procedures that in actuality extended suffering, rather than enhancing life itself?
Atul Gawande gives both examples from his medical experience, plus many examples where he has investigated and interviewed those involved. The text is heavy with anecdotes and stories which illustrate his points well, making extremely interesting and accessible reading. It is not always easy to read this sorry catalogue of clinical and domestic details, however, despite Gawande's flowing prose. So often the "experts'" best intentions are frustrated. So often people are provided with choices but not given the information which is most helpful. So often people do not yet know the questions which they should ask; those which would serve them best. The legal phrase, "the truth, the whole truth, and nothing but the truth" springs to mind. Clinicians, and those assessing care for the elderly, may well answer the questions posed. But the answers, particularly those given by doctors, if not understood in their full context, often prove to be misleading and extremely damaging for the lifestyle of the person asking. It is important to distinguish between "person", and "patient" here. Not everything can, or should, be "fixed" and made well.
"We make it possible for them to make it home - weaker and more impaired, though. They never return to their previous baseline."
We are human, not immortal. Dying is a natural, inevitable consequent of living. This sometimes tends to be forgotten. For example, sometimes a person in their desire to be healthy, do not properly understand that a certain operation may be extremely difficult and painful, and that at best it can only provide temporary relief; that they can never achieve the previous physical state which they desire.
"the people who opt for these treatments aren't thinking a few added months. They're thinking years. They're thinking at least they're getting that lottery ticket's chance that their disease might not even be a problem any more."
"Ninety-nine per cent understand they're dying, but one hundred per cent hope they're not ... They still want to beat their disease."
Some people may live longer without an operation. If they are offered careful specialist help to make it the sort of life they would enjoy, they might possibly then choose this option. Even if an operation can extend their life, the quality of life afterwards may not be fully explored, before a decision to commit to the operation is made. In other cases the individuals are not elderly, but merely people who have serious enough conditions to be judged as close to the end of their life. Or perhaps the people are elderly, but not suffering especially from any serious condition, but just "gradually falling apart", as one doctor says. Atul Gawande describes one resident of a care home, who displays a common feeling the elderly have,
"she didn't really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport. With her home went her control ... How did we wind up in a world where the only choices for the old seem to be either going down with the volcano or yielding all control over our lives?"
He carefully catalogues the development of various types of care homes and hospices, pointing out in which way they are successful, and how they can also be more akin to prisons. He observes,
"The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book "Asylums""
And in the current case study mentioned,
"All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lived with whomever they said she had to."
Such instances are often a result of legal rules; a standardised demand to meet prescribed standards of hygiene and safety. These are designed to protect the people in such care homes, but in fact only increase their institutionalisation, their feeling that they are living,
"A life designed to be safe but empty of anything they care about."
People denied individuality will either give in apathetically, or resist in any way they can, thereby risking appearing ridiculous to those in charge,
"Nursing home staff like, and approve of, residents who are "fighters" and show "dignity and self-esteem" - until these traits interfere with the staff's priorities for them. Then they are "feisty" ... non-cooperation - refusing the scheduled activities or medications. It's a favourite word for the aged."
The author also examines instances where elderly relatives live with their children, which often seems to be seen as a gold standard of care. Yet even when this has been a mutually agreed wish on both sides, he shows that all too frequently it has not really worked out for any individuals involved.
Atul Gawande does not shy away from difficult issues. He briefly enters the debate about assisted dying (also termed "assisted suicide" or "death with dignity") which is legal in countries such as the Netherlands, Belgium and Switzerland, and certain states in the US such as Oregon, Washington and Vermont. But by far the main part of this second half is concerned with the various ways of assisting people to have the old age they would themselves choose, whether in their own adapted home with help, or by moving to a wider community such as an assisted living facility, or
"something of an intermediate station between independent living and life in a nursing home."
He points out that it is a long road,
"there are costs to averting our eyes from the realities. We put off dealing with the adaptations that we need to make as a society. And we blind ourselves to the opportunities that exist to change the individual experience of aging for the better,"
And he charts all the progress made since the 1980's when Keren Brown Wilson, who initially had the concept, first built her home for the aged in Oregon, where they could live with freedom and autonomy, however limited they became by their physical deterioration.
"The key word in her mind was "home". Home is the one place where your own priorities hold sway."
"People can't stop the aging of their bodies, but there are ways to make it more manageable and to avert at least some of the worst effects."
The psychologist Laura Carstensen studied the emotional experiences of a large number of people from a variety of backgrounds and ages over many years. She called her resulting hypothesis the "socioemotional selectivity theory". In essence this derives from the interesting conclusion that how we choose to spend our time depends on how much time we perceive ourselves to have.
"When life's fragility is primed, people's goals and motives in their everyday lives shift completely. It's perspective, not age, that matters most."
Once this has been taken on board, it becomes clear that nobody can accurately prescribe for another, which activities they will choose to follow in extreme old age. Too often assumptions are made about what "old people" will like, and in each individual case, this may not be anywhere near the truth.
In addition there is the temptation to over-protect,
"Many of the things we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self."
My favourite anecdote from this book is that of Bill Thomas. He was a working class boy who had surprised everybody by going to Harvard Medical school. He worked as a doctor, but was also committed to a self-sustaining lifestyle, growing his own food and using solar and wind power on his homestead. He eventually accepted a position as head of a nursing home because he believed it would give him more time to develop this side of his life, rather than continuing as an Accident and Emergency hospital doctor. Yet he quickly identified the mistaken thinking behind any nursing home's regime, describing "Three Plagues" of nursing home existence - boredom, loneliness and helplessness. His solution, which succeeded beyond anyone's expectations, seems both ludicrous and frivolous in the extreme. He introduced two dogs, four cats and a hundred parakeets into the home; not gradually but all at once, in a chaotic mix where residents and staff alike had to think on their feet. It is extraordinary that he ever managed to get the plans approved by the various authorities! And it is even more startling that the idea was such a phenomenal success. He said to the author that,
"Habit and expectations had made institutional routines and safety greater priorities than living a good life and had prevented the nursing home from successfully bringing in even one dog to live with the residents."
Atul Gawande's description of the episode is a delight from start to finish, pointing up the human components throughout, the stupefaction, the clueless, bumbling incompetence, the lack of experience - but ultimately the teamwork, laughter and joy in life which resulted from this simple ploy where someone just thought outside the box for a moment.
"the effect on residents soon became impossible to ignore: the residents began to wake up and come to life ... The lights turned back on in people's eyes."
There is a fundamental need in humans for a reason to live. In the early 1970's two psychologists, Judith Rodin and Ellen Langer did a study on the difference in a nursing home between residents who were given a plant to care for, and those who were not. The difference was marked. Even such a small responsibility as caring for a plant had a measurable difference in quality of life, with residents becoming more active and alert and living longer.
"the lesson seems almost Zen: you live longer only when you stop trying to live longer."
Gawande concludes,
"Medicine's focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul."
He identifies the three types of doctor. Isolating these types I could immediately assign doctors and surgeons of my own experience to the relevant category.
The first is a "paternalistic" approach, where the doctor is a medical authority who is trying to ensure that the patient has the treatment which the doctor believes is the best for them. This is a traditional approach, and there are still quite a few doctors around who act this way.
The second is almost its opposite; Atul Gawande terms it an "informative" approach. The doctor tells the patient the facts and figures. The rest is up to the patient to decide. This is quite a common approach nowadays.
The third approach is arguably by far the best. In this the patient would have all the relevant information, but also much-needed guidance. This is termed an "interpretative" doctor-patient relationship, or "shared decision-making". The key is to determine what is important to the patient. A good question for a doctor to ask would therefore be, "What is important to you? What are you most worried about?" When this is made explicit, the way forward to which facts and figures would be most helpful, and thus the way to proceed, may be a lot clearer. I can personally remember instances where I have been happiest with medical matters, both for myself and for my loved ones, and in each case I would say that the professionals involved were using this "interpretative" technique.
Much of this book is relevant, whatever country you are living in, although many of the examples given of hospices are those in the US. There is ground-breaking work being done in this area, particularly regarding assisted living and ways of assessing what people want and need at the end of their life. It has to be said though, that as I was reading the book, I was heartily glad that I live in the UK, a country with - at the moment - a superlative health service. I have to now qualify this statement, as many professionals involved make it abundantly clear that the service is crumbling. Paramedics, nurses and doctors, have all relayed statistics to me recently which mean that on paper, with the current cutbacks, things just should not work. Yet because of individuals' compassion, dedication to the job, hard work and determination, they do, at the moment. Things are on a knife-edge.
I was relieved that my brother was not a statistic in a book such as this. That we - with assistance from the professionals - had been able to give him the ending to his life which, although it had come too early, was the one he desired. He was able to spend some time in a hospice, a good one too, and from there be sent home to his wonderful sea view, and continue to have dedicated hospice care at home. I was relieved that although he could take no food, and ultimately refused tube feed, the way he decided the end of his life was totally under his control. At every stage he had the choice. He was given oxygen, hydration and painkillers when required to relieve suffering. All his care was extremely kind and respectful, and he died a dignified death. According to everything I read in this book, we got it right.
My brother, after successful treatment for a virulent cancer, had been actively involved on the board of the Royal Marsden - a famous London Cancer Hospital. He had also been on the committee of the Royal College of Surgeons, before his final illness. And when he saw me reading Being Mortal: Medicine and What Matters in the End, knowing of the author's work, and at the tail end of his life with only days to live, he smilingly approved.
Atul Gawande is a caring, compassionate, respectful and intelligent person. Long may he continue his reflections, research, investigations - and continue writing these important books.
"Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength."
"All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties."
"I hope to face the end calmly and in my own way."
December 23, 2015
This is brilliant. I'm having a good run of 5* books at the moment. Atul Gawande refers several times to The Death of Ivan Ilych so now I have to read that. I like it how one book leads to another sometimes.
June 11, 2023
I think this is a book we should read before we are getting old or sick.
We must be aware that we will die one day.
Being Mortal reminds us of the complications to decide on medical treatments for terminal illnesses such as cancer.
This raises questions about how we can improve care for older people and those with serious illnesses.
The author talks about for creating better healthcare systems that prioritize the needs and desires of patients.
Remember, everyone deserves to be treated with dignity and have a say in their own healthcare decisions.
I felt empathy and forlorn when reading the stories about patients and their families in this book.
We must be aware that we will die one day.
Being Mortal reminds us of the complications to decide on medical treatments for terminal illnesses such as cancer.
This raises questions about how we can improve care for older people and those with serious illnesses.
The author talks about for creating better healthcare systems that prioritize the needs and desires of patients.
Remember, everyone deserves to be treated with dignity and have a say in their own healthcare decisions.
I felt empathy and forlorn when reading the stories about patients and their families in this book.
November 9, 2020
***UPDATE*** DR Gawande has been appointed to Biden's COVID team. An outstanding physician...and this book is brilliant*** Happy for you Americans. I can't emphasize enough to read this one. I'd give it a triple star if I could.
Simply put: This is a book about dying. But, on one's own terms. Gawande boldy argues that the medical world has got it wrong when it comes to the treatment of the dying. The objective of medicine should not be to ensure health and survival; rather it should be about the quality of life and what it means to die with dignity, a sense of purpose, and most importantly, control over one's life. It's about being able to write the final chapter the way you want to and to enable well-being in the sense one wishes to be alive. It's considering hospice vs emergency room care. What an unpleasant topic, but WHOA, what a relevant one! Through a series of interviews with seniors and the terminally ill, he asks them what means the most to them; what are they willing to sacrifice and what they won't, in order to extend their life a little longer. He examines how the dying were treated historically to the cultural, traditional institutionalized view we have now. Written humanely by an emergency physician who in my opinion, has got it so right. I can only hope to have a physician as intuitive and caring as he, as I shape my ending chapter. 5* read.
Simply put: This is a book about dying. But, on one's own terms. Gawande boldy argues that the medical world has got it wrong when it comes to the treatment of the dying. The objective of medicine should not be to ensure health and survival; rather it should be about the quality of life and what it means to die with dignity, a sense of purpose, and most importantly, control over one's life. It's about being able to write the final chapter the way you want to and to enable well-being in the sense one wishes to be alive. It's considering hospice vs emergency room care. What an unpleasant topic, but WHOA, what a relevant one! Through a series of interviews with seniors and the terminally ill, he asks them what means the most to them; what are they willing to sacrifice and what they won't, in order to extend their life a little longer. He examines how the dying were treated historically to the cultural, traditional institutionalized view we have now. Written humanely by an emergency physician who in my opinion, has got it so right. I can only hope to have a physician as intuitive and caring as he, as I shape my ending chapter. 5* read.
November 28, 2019
Update: $3.99 kindle download today. If you missed this book… And I can’t imagine that many people have missed reading it..... it’s an extraordinary book to read.
I’ve been a fan of Atul Gawande since reading “Complications” with my local book club many years back --where 35 people showed up to 'express'.
Our monthly Saturday's meetings are limited to 25 members of our 500+ Bay Area Book club --but members were didn't care --they were coming! After finding extra chairs --we sat down for one of the most emotionally-connected-book club discussion to date.
There must already be at least 1,000 4 and 5 star reviews on Amazon --and it that does not speak for itself by now --then I don't know what does.
Even though I bought this book the day it came out --I had other reading to do (still do) -- Then my husband had his accident --(which began feelings of a trial run for some gut-facing-facts-of-life). Plus, last year I was diagnosed with 'two' autoimmune diseases -- which I know damn well I struggle with it silently and privately while I also hippity-hop out into the world each day.
Yet, I'm at peace --(come concerns;I'm not a total saint) --but life doesn't hurt as much as when I was a "young-strong-lean-mean-muscle-fighting-the-world-machine".
Several reviews have been about readers personal connection with illness and death, written with dignity, courage and deeply felt. Others were about choices for treatments and nursing homes, and our healthcare system. One reviewer reminds us, "EVERYONE WHO IS GOING TO DIE SHOULD READ THIS BOOK".
ALL REVIEWS I'VE READ HAVE BEEN FIRST RATE ....(written with feelings of passion)
Since Atul Gawande always seems to have balance in his books --(life, love, and loss)--
I want to share something positive written about aging. And , please, read other reviews --and I also can't stress strong enough.: Atul has written a searingly honest book. He lets us see the impact of serious illness, and death, while at the same time captures the resiliency of the human spirit.
Research has found: "Far from growing unhappier, people reported more positive emotions as they age. They become less prone to anxiety, depression, and anger. They experienced trials, to be sure, and more moments of poignancy--that is, of positive and negative emotion mixed together. But overall, they found living to be more emotionally satisfying and stable experience as time passed, even as old age narrowed the lives they led."
"Being Mortal" is beautifully written. Atul Gawande, teaches us something important about how to live with the time we have.
I’ve been a fan of Atul Gawande since reading “Complications” with my local book club many years back --where 35 people showed up to 'express'.
Our monthly Saturday's meetings are limited to 25 members of our 500+ Bay Area Book club --but members were didn't care --they were coming! After finding extra chairs --we sat down for one of the most emotionally-connected-book club discussion to date.
There must already be at least 1,000 4 and 5 star reviews on Amazon --and it that does not speak for itself by now --then I don't know what does.
Even though I bought this book the day it came out --I had other reading to do (still do) -- Then my husband had his accident --(which began feelings of a trial run for some gut-facing-facts-of-life). Plus, last year I was diagnosed with 'two' autoimmune diseases -- which I know damn well I struggle with it silently and privately while I also hippity-hop out into the world each day.
Yet, I'm at peace --(come concerns;I'm not a total saint) --but life doesn't hurt as much as when I was a "young-strong-lean-mean-muscle-fighting-the-world-machine".
Several reviews have been about readers personal connection with illness and death, written with dignity, courage and deeply felt. Others were about choices for treatments and nursing homes, and our healthcare system. One reviewer reminds us, "EVERYONE WHO IS GOING TO DIE SHOULD READ THIS BOOK".
ALL REVIEWS I'VE READ HAVE BEEN FIRST RATE ....(written with feelings of passion)
Since Atul Gawande always seems to have balance in his books --(life, love, and loss)--
I want to share something positive written about aging. And , please, read other reviews --and I also can't stress strong enough.: Atul has written a searingly honest book. He lets us see the impact of serious illness, and death, while at the same time captures the resiliency of the human spirit.
Research has found: "Far from growing unhappier, people reported more positive emotions as they age. They become less prone to anxiety, depression, and anger. They experienced trials, to be sure, and more moments of poignancy--that is, of positive and negative emotion mixed together. But overall, they found living to be more emotionally satisfying and stable experience as time passed, even as old age narrowed the lives they led."
"Being Mortal" is beautifully written. Atul Gawande, teaches us something important about how to live with the time we have.
January 30, 2016
If you’re not afraid of dying, you’re either lucky or lying.
Meanwhile, this book gave me the heebee-jeebees! Did I really need to know that as I age my aorta will get crunchy and my shrinking brain will rattle around in my skull? Or did I need to know (and perhaps forever visualize) the disgusting details of the downhill spiral of my teeth and feet, and what I’ll have to show for them? Don't worry, the author does not dwell on these things, but I do! And, oh, how I hope I'm not one of the 40% (!) who is toothless by the time I'm 85, if, of course, I live that long. And do I even want to live that long after reading this depressing book???! Johnny Depp says he wants to be on a morphine drip and just drool and nod. I’m with him. So actually, this book did help me figure out how I want to go out, if I get the choice.
I guess going into this, I thought it would be a how-to book, how to not be scared of dying. Instead, I got a terrifying view of the horrors of nursing homes, terminal illness, aging, and deathbeds, and a blow-by-blow account of my bodily deterioration and decay. It is not a pretty picture. It is worse than my over-active imagination can even conjure up.
Informative? Yes, in spades. And this doctor can write! Clear, captivating prose. I learned so much about how doctors and other caregivers think of and handle the elderly and terminal patients. It talked about how people cling to hope even if their case is hopeless, and how doctors are often unable to tell it to them straight. And about how doctors, despite their knowledge about the facts, often hold out hope for a miracle too.
Other good stuff:
-Liked the many stories of people thriving in assisted living places. The people were real, their stories fascinating in a quiet way.
-The author is compassionate and has a conversational tone—very undoctor-like.
-Liked learning about what hospice does exactly and about how much they can help out.
-Liked that a provider had the bright idea to bring in other living things—plants, dogs, and kids—to assisted living places and loved hearing about how the residents responded so well.
Stuff I didn’t like:
-Too much history about assisted living, and too many pioneers mentioned by name. I get it that the author wants to give them credit, but we readers won’t remember a single one. Maybe some of this info would have better in an Acknowledgment section?
-The author claims that people get more mellow with age. What? Then why are so many old people on anti-depressants and anti-anxiety meds?
Stuff I wanted:
-Wanted it to be more psychological.
-Wanted more discussion about the fear of death, and a mention of how religion plays a part.
-Wanted talk about the cost of medical care. Does insurance always pay for chemo, for example? Do families go bankrupt? How much do finances affect the decision of whether to continue with treatment?
-Wanted a secret formula for shooing away the fear of death and dying.
Funny, I was way more comfortable reading about young people with terminal illnesses than about old people about to die. I can handle reading about suffering that can’t happen to me; I’m calmly empathetic. But tell me about someone my age (65) or older who has just been diagnosed as terminal, and I squirm and twitch out of sight. Just give me the clicker and let me watch Louis C.K., will you?
All fears and gripes aside, I know this is an important book, and it’s an amazing one. The doctor is talking about the elephant in the room, which is cathartic, depressing, and anxiety-producing all at once—you might want to have your valium handy. I do think this book will be scary to read if you're in your 60s or older. That is, unless you’re lucky or lying.
Meanwhile, this book gave me the heebee-jeebees! Did I really need to know that as I age my aorta will get crunchy and my shrinking brain will rattle around in my skull? Or did I need to know (and perhaps forever visualize) the disgusting details of the downhill spiral of my teeth and feet, and what I’ll have to show for them? Don't worry, the author does not dwell on these things, but I do! And, oh, how I hope I'm not one of the 40% (!) who is toothless by the time I'm 85, if, of course, I live that long. And do I even want to live that long after reading this depressing book???! Johnny Depp says he wants to be on a morphine drip and just drool and nod. I’m with him. So actually, this book did help me figure out how I want to go out, if I get the choice.
I guess going into this, I thought it would be a how-to book, how to not be scared of dying. Instead, I got a terrifying view of the horrors of nursing homes, terminal illness, aging, and deathbeds, and a blow-by-blow account of my bodily deterioration and decay. It is not a pretty picture. It is worse than my over-active imagination can even conjure up.
Informative? Yes, in spades. And this doctor can write! Clear, captivating prose. I learned so much about how doctors and other caregivers think of and handle the elderly and terminal patients. It talked about how people cling to hope even if their case is hopeless, and how doctors are often unable to tell it to them straight. And about how doctors, despite their knowledge about the facts, often hold out hope for a miracle too.
Other good stuff:
-Liked the many stories of people thriving in assisted living places. The people were real, their stories fascinating in a quiet way.
-The author is compassionate and has a conversational tone—very undoctor-like.
-Liked learning about what hospice does exactly and about how much they can help out.
-Liked that a provider had the bright idea to bring in other living things—plants, dogs, and kids—to assisted living places and loved hearing about how the residents responded so well.
Stuff I didn’t like:
-Too much history about assisted living, and too many pioneers mentioned by name. I get it that the author wants to give them credit, but we readers won’t remember a single one. Maybe some of this info would have better in an Acknowledgment section?
-The author claims that people get more mellow with age. What? Then why are so many old people on anti-depressants and anti-anxiety meds?
Stuff I wanted:
-Wanted it to be more psychological.
-Wanted more discussion about the fear of death, and a mention of how religion plays a part.
-Wanted talk about the cost of medical care. Does insurance always pay for chemo, for example? Do families go bankrupt? How much do finances affect the decision of whether to continue with treatment?
-Wanted a secret formula for shooing away the fear of death and dying.
Funny, I was way more comfortable reading about young people with terminal illnesses than about old people about to die. I can handle reading about suffering that can’t happen to me; I’m calmly empathetic. But tell me about someone my age (65) or older who has just been diagnosed as terminal, and I squirm and twitch out of sight. Just give me the clicker and let me watch Louis C.K., will you?
All fears and gripes aside, I know this is an important book, and it’s an amazing one. The doctor is talking about the elephant in the room, which is cathartic, depressing, and anxiety-producing all at once—you might want to have your valium handy. I do think this book will be scary to read if you're in your 60s or older. That is, unless you’re lucky or lying.
October 11, 2019
Being Mortal tackles the all too uncomfortable subject of mortality, and what it means to live and die well in life's last moments. In our modern world of medicine and technology, hospitals and doctors can always do more, but is more surgery or therapy always the right step at the end of life when positive outcomes are unlikely and severe side effects are guaranteed?
For me, the most eye-opening and useful parts of the book are those comparing the different types of care that someone can receive as they reach end of life, including palliative care, assisted living, nursing home, and hospice. I also appreciate that the book looks at this emotionally-distressing time from the perspective of both the person coming to the end of their life, as well as from that of their loved ones. Often, our impulse is to do everything we can to prolong life, but this book makes a strong case for quality now over quantity later, so that purpose and meaning can be preserved for as long as possible.
The book did feel over-simplified though. For example, the people in here with access to all the choices were either old enough to qualify for Medicare, young with good insurance, or lucky enough to find an affordable plan that provided quality care. But in the real world, that often isn't the case. Another example is that the dying person, as well as their loved ones, were reasonable people who are self-aware and communicated openly. But when dealing with relatives, that often isn't the case.
While this book is a great kicking off point for starting discussions and forming a plan, it certainly doesn't provide any concrete answers or even can act as a guide. Dying is a personal thing, fraught with perilous decisions and messy emotions, just like living is. What works for one person doesn't necessarily work for another. For such a difficult subject, I felt myself swept along in Dr. Gawande's eloquent writing and compassionate storytelling. I go away having learned a lot, but also feeling a little disappointed (unfair, I know) that this book did not provide me with more concrete answers to life's difficult questions.
For me, the most eye-opening and useful parts of the book are those comparing the different types of care that someone can receive as they reach end of life, including palliative care, assisted living, nursing home, and hospice. I also appreciate that the book looks at this emotionally-distressing time from the perspective of both the person coming to the end of their life, as well as from that of their loved ones. Often, our impulse is to do everything we can to prolong life, but this book makes a strong case for quality now over quantity later, so that purpose and meaning can be preserved for as long as possible.
The book did feel over-simplified though. For example, the people in here with access to all the choices were either old enough to qualify for Medicare, young with good insurance, or lucky enough to find an affordable plan that provided quality care. But in the real world, that often isn't the case. Another example is that the dying person, as well as their loved ones, were reasonable people who are self-aware and communicated openly. But when dealing with relatives, that often isn't the case.
While this book is a great kicking off point for starting discussions and forming a plan, it certainly doesn't provide any concrete answers or even can act as a guide. Dying is a personal thing, fraught with perilous decisions and messy emotions, just like living is. What works for one person doesn't necessarily work for another. For such a difficult subject, I felt myself swept along in Dr. Gawande's eloquent writing and compassionate storytelling. I go away having learned a lot, but also feeling a little disappointed (unfair, I know) that this book did not provide me with more concrete answers to life's difficult questions.
November 18, 2020
كتاب إنساني إلى أبعد حد
ولأجل هذا يمكن وصفه- رغم ما به من ألم قاتل- بالجميل للغاية.
واقعي بشكلٍ مرعب، يترك في القلب ندبة لا تنمحي
وواحد من الكتب التي تغير نظرتك للحياة، للبشر، للكون كله..
كتاب يتألم عامة الناس بسببه مرة، مرتان، ربما ثلاث.. أو أكثر
أما الطبيب والمريض.. فيتألمّان هنا ألف مرة ومرة.
صدق قوله تعالى حين قال:
" لَقَدْ خَلَقْنَا الإِنسَانَ فِي كَبَدٍ * أَيَحْسَبُ أَن لَّن يَقْدِرَ عَلَيْهِ أَحَدٌ"
البلد: الآيات 5،4
تمت.
ولأجل هذا يمكن وصفه- رغم ما به من ألم قاتل- بالجميل للغاية.
واقعي بشكلٍ مرعب، يترك في القلب ندبة لا تنمحي
وواحد من الكتب التي تغير نظرتك للحياة، للبشر، للكون كله..
كتاب يتألم عامة الناس بسببه مرة، مرتان، ربما ثلاث.. أو أكثر
أما الطبيب والمريض.. فيتألمّان هنا ألف مرة ومرة.
صدق قوله تعالى حين قال:
" لَقَدْ خَلَقْنَا الإِنسَانَ فِي كَبَدٍ * أَيَحْسَبُ أَن لَّن يَقْدِرَ عَلَيْهِ أَحَدٌ"
البلد: الآيات 5،4
تمت.
November 25, 2020
Being Mortal: Medicine and What Matters in the End, Atul Gawande
Being Mortal is a meditation on how people can better live with age-related frailty, serious illness, and approaching death.
Gawande calls for a change in the way that medical professionals treat patients approaching their ends. He recommends that instead of focusing on survival, practitioners should work to improve quality of life and enable well-being.
Gawande shares personal stories of his patients' and his own relatives' experiences, the realities of old age which involve broken hips and dementia, overwhelmed families and expensive geriatric care, and loneliness and loss of independence.
In the beginning of the book he explores different models of senior living, including concepts such as poorhouses, multi-generational households and nursing homes. Gawande explores personal stories as well as accounts from geriatric doctors such as Keren Brown Wilson, an originator of the assisted living concept. He ruminates on stories of people dealing with age-related frailty, serious illness and death, and his own confrontation with mortality. ...
عنوان: «آدمیزاد رفتنی است: بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟»؛ «بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟»؛ «مرگ با تشریفات پزشکی: آنچه پزشکی درباره مردن نمیداند؛»؛ نویسنده: اتول گاواندی؛ تاریخ نخستین خوانش: روز پنجم ماه آگوست سال 2019میلادی
عنوان: آدمیزاد رفتنی است: بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟؛ نویسنده: اتول گاواندی؛ مترجم: آزیتا راثی، نازنین سرکاراتپور؛ تهران نشر همان، 1397؛ در 230ص؛ شابک 9786226203012؛ عنوان دیگر بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟ موضوع: سالمندان - از نویسندگان ایالات متحده آمریکا - سده 21م
عنوان: مرگ با تشریفات پزشکی: آنچه پزشکی درباره مردن نمیداند؛ نویسنده: آتول گاواندی؛ مترجم: حامد قدیری؛ ویراستار: مرضیه اکبرپور؛ تهران: ترجمان علوم انسانی، 1398؛ در 368 ص؛ شابک 9786008091523؛
روزهای واپسین عمرِ سالمندان، و بیماران بیدرمان، بیشتر در آسایشگاهها، و بخش مراقبتهای ویژه ی بیمارستانها، میگذرند؛ پزشکان، درمانهایی را پیش میبرند، تا مغزهایمان را، گیج و منگ کنند، و شیره ی بدنهایمان را میکشند، تا مگر شانس نصفه و نیمه ای، برای زنده ماندن به ما بدهند؛ و در پایان افسوس میخوریم، که همان اتفاقی افتاد که نباید؛ پزشکی مدرن، به چیزی جز درمان نمیاندیشد، اما مرگ درمان ندارد؛ «آتول گاواندی»، جراح، و نویسنده ی «آمریکایی»، در پی اینست، تا ریشه ی ناتوانی پزشکی مدرن، در مواجهه با مرگ را، بیابد، و راههایی را، به بیماران، و پزشکان پیشنهاد میدهد، که چگونه نگاهی تازه، به وظیفه ی پزشکی خویش، داشته باشند؛
تاریخ بهنگام رسانی 04/09/1399هجری خورشیدی؛ ا. شربیانی
Being Mortal is a meditation on how people can better live with age-related frailty, serious illness, and approaching death.
Gawande calls for a change in the way that medical professionals treat patients approaching their ends. He recommends that instead of focusing on survival, practitioners should work to improve quality of life and enable well-being.
Gawande shares personal stories of his patients' and his own relatives' experiences, the realities of old age which involve broken hips and dementia, overwhelmed families and expensive geriatric care, and loneliness and loss of independence.
In the beginning of the book he explores different models of senior living, including concepts such as poorhouses, multi-generational households and nursing homes. Gawande explores personal stories as well as accounts from geriatric doctors such as Keren Brown Wilson, an originator of the assisted living concept. He ruminates on stories of people dealing with age-related frailty, serious illness and death, and his own confrontation with mortality. ...
عنوان: «آدمیزاد رفتنی است: بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟»؛ «بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟»؛ «مرگ با تشریفات پزشکی: آنچه پزشکی درباره مردن نمیداند؛»؛ نویسنده: اتول گاواندی؛ تاریخ نخستین خوانش: روز پنجم ماه آگوست سال 2019میلادی
عنوان: آدمیزاد رفتنی است: بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟؛ نویسنده: اتول گاواندی؛ مترجم: آزیتا راثی، نازنین سرکاراتپور؛ تهران نشر همان، 1397؛ در 230ص؛ شابک 9786226203012؛ عنوان دیگر بیماریهای سخت، زندگی بهتر یا زندگی بیشتر؟ موضوع: سالمندان - از نویسندگان ایالات متحده آمریکا - سده 21م
عنوان: مرگ با تشریفات پزشکی: آنچه پزشکی درباره مردن نمیداند؛ نویسنده: آتول گاواندی؛ مترجم: حامد قدیری؛ ویراستار: مرضیه اکبرپور؛ تهران: ترجمان علوم انسانی، 1398؛ در 368 ص؛ شابک 9786008091523؛
روزهای واپسین عمرِ سالمندان، و بیماران بیدرمان، بیشتر در آسایشگاهها، و بخش مراقبتهای ویژه ی بیمارستانها، میگذرند؛ پزشکان، درمانهایی را پیش میبرند، تا مغزهایمان را، گیج و منگ کنند، و شیره ی بدنهایمان را میکشند، تا مگر شانس نصفه و نیمه ای، برای زنده ماندن به ما بدهند؛ و در پایان افسوس میخوریم، که همان اتفاقی افتاد که نباید؛ پزشکی مدرن، به چیزی جز درمان نمیاندیشد، اما مرگ درمان ندارد؛ «آتول گاواندی»، جراح، و نویسنده ی «آمریکایی»، در پی اینست، تا ریشه ی ناتوانی پزشکی مدرن، در مواجهه با مرگ را، بیابد، و راههایی را، به بیماران، و پزشکان پیشنهاد میدهد، که چگونه نگاهی تازه، به وظیفه ی پزشکی خویش، داشته باشند؛
تاریخ بهنگام رسانی 04/09/1399هجری خورشیدی؛ ا. شربیانی
December 24, 2014
This is probably the most important book on mortality I've ever read. It is packed full of information and written in easily comprehendible language, in fact, very personal language. There is so much information here I had a hard time reviewing as I want to share it all! Promise, I won't, but will try to stay with just a few important highlights.
First, this book looks at nursing homes and the rise and fall of assisted living. You may think, what? We have assisted living. But, for a short time after people no longer simply died at home, assisted living, through the hard fought battles of one woman in particular was available to all patients. Now the primary goal of safety has once again given us nursing homes. Assisted living is mostly for those with the money to afford it. This need for safety has left many to languish at places no different than former asylums. This so called "life" is devoid of any purpose to live, and actually increases death rates.
This book then goes into the medical profession. The focus here is on repair, how to fix, what medications will work, when is surgery necessary. The only problem is that the medical profession has no idea how to talk to people, and is even discouraged from doing so. Most doctors have not had a single course in geriatrics. What to do with an old person? Amazing that we have no sense of our own mortality. Now 25% of Medicare spending is for 5% in their final year of life, with very little benefit. A great quote was "We imagine that we can wait until doctors tell us there is nothing more they can do, but rarely is there nothing more that doctors can do." So this instance of survival at all costs has left many to die in a hospital with tubes everywhere, fading in and out of awareness. This of course leaves no chance for good-byes, even "I'm sorry" or "I love you."
What it really comes down to is a few important questions. I loved the ones provided in this book. "The biggest questions to ask are, what are your biggest fears or concerns? What goals are most important to you and what trade-offs are you willing to make, or not make?"
Another topic was hospice. I assumed hospice is only for the final end of life, but it is not. Hospice is available at any time, and the focus is on a person's wants and needs. Many get better after a stay, and leave, some even return to work!
Incredible book. Atul Gawande is a physician who I believe has written a most timely and important book. He provides an inside look at medicine, a historical perspective on dying, the most recent surveys on cost and care options and so much more. He comes from his own experiences and clearly his research has changed his own outlook on mortality. A must read. Highly recommended!
First, this book looks at nursing homes and the rise and fall of assisted living. You may think, what? We have assisted living. But, for a short time after people no longer simply died at home, assisted living, through the hard fought battles of one woman in particular was available to all patients. Now the primary goal of safety has once again given us nursing homes. Assisted living is mostly for those with the money to afford it. This need for safety has left many to languish at places no different than former asylums. This so called "life" is devoid of any purpose to live, and actually increases death rates.
This book then goes into the medical profession. The focus here is on repair, how to fix, what medications will work, when is surgery necessary. The only problem is that the medical profession has no idea how to talk to people, and is even discouraged from doing so. Most doctors have not had a single course in geriatrics. What to do with an old person? Amazing that we have no sense of our own mortality. Now 25% of Medicare spending is for 5% in their final year of life, with very little benefit. A great quote was "We imagine that we can wait until doctors tell us there is nothing more they can do, but rarely is there nothing more that doctors can do." So this instance of survival at all costs has left many to die in a hospital with tubes everywhere, fading in and out of awareness. This of course leaves no chance for good-byes, even "I'm sorry" or "I love you."
What it really comes down to is a few important questions. I loved the ones provided in this book. "The biggest questions to ask are, what are your biggest fears or concerns? What goals are most important to you and what trade-offs are you willing to make, or not make?"
Another topic was hospice. I assumed hospice is only for the final end of life, but it is not. Hospice is available at any time, and the focus is on a person's wants and needs. Many get better after a stay, and leave, some even return to work!
Incredible book. Atul Gawande is a physician who I believe has written a most timely and important book. He provides an inside look at medicine, a historical perspective on dying, the most recent surveys on cost and care options and so much more. He comes from his own experiences and clearly his research has changed his own outlook on mortality. A must read. Highly recommended!
August 22, 2015
A clear, uplifting, and eloquent education on the deficiencies of the medical establishment in end-of-life care and promising progress toward improvements. This Boston surgeon has already authored accessible books on the human art behind the science of medicine with his “Complications” and “Better”. He is a master at using stories of his cases to address disparities between our expectations and the reality of medical practice and drawing on diverse research to advocate for needed changes. Here he delves into the tragedy of so many people at the end of their life dying in the depersonalized, institutional conditions of hospitals and nursing homes.
In in his own training he was taught to see death as the enemy to fight at every step with everything in the arsenal of medicine and didn’t conceive any role for doctors in facilitating help with the dying process. He does remember a seminar in which they read Tolstoy’s “The Death of Ivan Ilyich”, which highlighted the benefits the character gained from simple, humane interactions with his servant. But that lesson was soon forgotten. Only when some of his surgical interventions came to a bad end of complications and a miserable death in the ICU did he come to consider changing how he approached his cases. For one man with cancer invading the spinal cord, he successfully removed enough to delay the onset of paralysis, but he never recovered from the procedure. Such failures led the good doctor to rethink is ingrained approaches:
The chances that he would return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something good would result. …
We pay doctors give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise. This certainly is a factor. But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is …
The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.
In a set of brief chapters, Gawande adroitly covers innovations in making nursing homes more humane, the advent of assisted living solutions, and growth in palliative care and hospice services. Simple approaches like allowing nursing home residents have pets or opportunities to socialize with kids in a nearby afterschool program had surprisingly powerful benefits. The power of assisted living programs to preserve privacy and autonomy while fostering socialization and sense of community is illustrated with exemplary stories. From a low point of just 17% of people dying at home in the 80’s, by 2010 fully 40% were being supported at the end through hospice care, of which half involved a home location. Studies revealed that patients who stopped chemo sooner and entered hospice sooner had less suffering at the end and lived up to 25% longer. The outcome had Zen aspect in that “you live longer only when you stop trying to live longer”. Just family communication about end of life care decisions by palliative care providers had a huge impact on reducing costly ER and ICU utilization.
The lesson the Gawande learned and began applying to his patients (and the situation of his own father) was to take the time to find out what gives the person a sense of meaning and purpose in life and to explore the trade-offs they are willing to make to best fulfill those goals relative to the risks of procedures aimed at giving them a longer life. But the challenge remains in every case to guide his patients on when to stop the pursuit of treatment in favor concentrating on living the best they can with what they have left. The case of a hero of mine, biologist Stephen Jay Gould, facing a fatal lung disease, mesothelioma, is telling. In an essay “The Median Isn’t the Message” he notes how variation around the median survival of 8 months included a long tail of minority cases with longer survival, a situation luck placed him with (he lived 20 years more before succumbing to an associated lung cancer):
”Of course I agree with the preacher of Ecclesiates that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”
What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and with only the rudiments of a system to prepare patients for the near certainty those tickets will not win. Hope is not a plan, but hope is our plan.
After exploring the insights of social scientists such as Goffman, Maslow, and Dworkin, he arrives at some important concepts that providers and families of the seriously ill should keep foremost in mind:
Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human.
…
This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but expand them, in the name of living a worthwhile life.
…
Most often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.”
People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.
In in his own training he was taught to see death as the enemy to fight at every step with everything in the arsenal of medicine and didn’t conceive any role for doctors in facilitating help with the dying process. He does remember a seminar in which they read Tolstoy’s “The Death of Ivan Ilyich”, which highlighted the benefits the character gained from simple, humane interactions with his servant. But that lesson was soon forgotten. Only when some of his surgical interventions came to a bad end of complications and a miserable death in the ICU did he come to consider changing how he approached his cases. For one man with cancer invading the spinal cord, he successfully removed enough to delay the onset of paralysis, but he never recovered from the procedure. Such failures led the good doctor to rethink is ingrained approaches:
The chances that he would return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something good would result. …
We pay doctors give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise. This certainly is a factor. But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is …
The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.
In a set of brief chapters, Gawande adroitly covers innovations in making nursing homes more humane, the advent of assisted living solutions, and growth in palliative care and hospice services. Simple approaches like allowing nursing home residents have pets or opportunities to socialize with kids in a nearby afterschool program had surprisingly powerful benefits. The power of assisted living programs to preserve privacy and autonomy while fostering socialization and sense of community is illustrated with exemplary stories. From a low point of just 17% of people dying at home in the 80’s, by 2010 fully 40% were being supported at the end through hospice care, of which half involved a home location. Studies revealed that patients who stopped chemo sooner and entered hospice sooner had less suffering at the end and lived up to 25% longer. The outcome had Zen aspect in that “you live longer only when you stop trying to live longer”. Just family communication about end of life care decisions by palliative care providers had a huge impact on reducing costly ER and ICU utilization.
The lesson the Gawande learned and began applying to his patients (and the situation of his own father) was to take the time to find out what gives the person a sense of meaning and purpose in life and to explore the trade-offs they are willing to make to best fulfill those goals relative to the risks of procedures aimed at giving them a longer life. But the challenge remains in every case to guide his patients on when to stop the pursuit of treatment in favor concentrating on living the best they can with what they have left. The case of a hero of mine, biologist Stephen Jay Gould, facing a fatal lung disease, mesothelioma, is telling. In an essay “The Median Isn’t the Message” he notes how variation around the median survival of 8 months included a long tail of minority cases with longer survival, a situation luck placed him with (he lived 20 years more before succumbing to an associated lung cancer):
”Of course I agree with the preacher of Ecclesiates that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”
What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and with only the rudiments of a system to prepare patients for the near certainty those tickets will not win. Hope is not a plan, but hope is our plan.
After exploring the insights of social scientists such as Goffman, Maslow, and Dworkin, he arrives at some important concepts that providers and families of the seriously ill should keep foremost in mind:
Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human.
…
This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but expand them, in the name of living a worthwhile life.
…
Most often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.”
People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.
June 20, 2015
* Originally reviewed on the Night Owls Press blog here. *
I was first introduced to Atul Gawande's writing in his "Annals of Medicine" column for The New Yorker magazine. He wrote a thrilling piece about a woman with an itch—an itch so strong, so persistent, it was beyond belief. It stumped all of her doctors. Medications didn't work. MRIs and nerve tests revealed nothing conclusive. One night, the woman woke up to fluid dripping down her face. As if in some B-horror movie, Gawande eventually reveals that she had scratched through bone, through her very own skull, into her brain. Delving into neuroscience and how our brains work and the nature of perception, Gawande wrote a piece as compelling as a forensic thriller. It wasn't just a dry reporting of medical cases and scientific findings. Gawande quoted lines from Dante's Inferno. It read like a story.
Atul Gawande's Being Mortal Medicine and What Matters in the End is less an out-and-out thriller and more a personal meditation on modern medicine and how it has treated illness, aging, and dying. Being Mortal pulls back the veil on the institutions that treat the terminally ill and aging. It is a clear-eyed exploration of the sad business of dying and our bodies falling apart, taking us on a tour of gerontology, nursing homes, intensive care units, assisted-living facilities, and multigenerational homes.
It is also a calm critique on medicine. He writes: "Medical professionals concentrate on repair of health, not sustenance of the soul. ... It's been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs."
Gawande's message: The experiment has failed. Twenty-first century medicine can do miraculous things. But in dealing with end-of-life issues, modern medicine has been dismal.
Quality of life has been the most overlooked metric in medical treatments. The measure of success for doctors is prolonging life, even if those extra days, weeks, months are miserable and and full of pain. But according to Gawande it's not the fault of doctors or patients. It's an entire culture we've built up: how we think of and treat the elderly, how everyone expects doctors to do everything it takes, to offer and try every medical procedure possible to slow down the inevitable.
And there is a lot to fear, too—not just in the inevitable—but in the choices we're given. Gawande doesn't shy away from how this topic hits close to home. His wife's grandmother and his own father are two people who are discussed intimately throughout the book. He weaves the stories about their health and decline with the stories of other patients and colleagues.
When describing how his own father struggled with the decision on whether to pursue more radiation therapy for a tumor growing in his spine, Gawande dwells on the tough decisions that needed to be made. His father had already undergone surgery to treat it, but things had taken a turn for the worse. Should he pursue more aggressive chemo, knowing the debilitating side effects that would happen? It is a question that faces many families when they sit in the doctor's office and have to weigh the tradeoffs. Having choices doesn't necessarily make it easier.
At the heart of the book is a searching exploration of what the basic purpose of medicine really is. What should we be paying doctors to do? Gawande writes: "Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don't want a general [a doctor] who fights to the point of total annihilation."
Fight to the bitter end… sadly, that's what most people try to do.
More and more, as the population in the U.S. gets older and as we live longer, we need more doctors and nurses like Gawande who will broach discussion and say what they have seen, to tell people how death in a hospital really is, how aging really is, and prepare us for what's to come.
So what needs to be done? Gawande suggests several things, and the message is clear: We need more of our institutions and medical practitioners to believe that we shouldn't limit people's choices in the name of safety but expand them, in the name of living a worthwhile life. We see this in the later chapters when we meet more enlightened practitioners and how they take a more patient-centric approach rather than a paternalistic one. There is a wonderful anecdote that involves a colorful menagerie and an idealistic country doctor.
While Gawande is critical and often frames his exploration of medicine in big socioeconomic and cultural terms, his arguments don't take sides. He doesn't write to bully or polarize; instead, he takes a deliberate, sometimes plodding "middle road." I sometimes wished he would be more scathing of some of the atrocious experiences he hears about and even witnesses. He doesn't loudly condemn bad decisions that were made in prescribing care or stripping away an elderly person's autonomy. Instead, what he is good at is to acknowledge uncertainty and ambiguity. All of us have underestimated the human element in medicine in some way.
An intense, thought-provoking read that made me more mindful about life—and the march toward the inevitable.
[Disclaimer: I received an ARC of this book from the publisher for an honest and candid review. This review was originally written for LibraryThing Early Reviewers.]
I was first introduced to Atul Gawande's writing in his "Annals of Medicine" column for The New Yorker magazine. He wrote a thrilling piece about a woman with an itch—an itch so strong, so persistent, it was beyond belief. It stumped all of her doctors. Medications didn't work. MRIs and nerve tests revealed nothing conclusive. One night, the woman woke up to fluid dripping down her face. As if in some B-horror movie, Gawande eventually reveals that she had scratched through bone, through her very own skull, into her brain. Delving into neuroscience and how our brains work and the nature of perception, Gawande wrote a piece as compelling as a forensic thriller. It wasn't just a dry reporting of medical cases and scientific findings. Gawande quoted lines from Dante's Inferno. It read like a story.
Atul Gawande's Being Mortal Medicine and What Matters in the End is less an out-and-out thriller and more a personal meditation on modern medicine and how it has treated illness, aging, and dying. Being Mortal pulls back the veil on the institutions that treat the terminally ill and aging. It is a clear-eyed exploration of the sad business of dying and our bodies falling apart, taking us on a tour of gerontology, nursing homes, intensive care units, assisted-living facilities, and multigenerational homes.
It is also a calm critique on medicine. He writes: "Medical professionals concentrate on repair of health, not sustenance of the soul. ... It's been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs."
Gawande's message: The experiment has failed. Twenty-first century medicine can do miraculous things. But in dealing with end-of-life issues, modern medicine has been dismal.
Quality of life has been the most overlooked metric in medical treatments. The measure of success for doctors is prolonging life, even if those extra days, weeks, months are miserable and and full of pain. But according to Gawande it's not the fault of doctors or patients. It's an entire culture we've built up: how we think of and treat the elderly, how everyone expects doctors to do everything it takes, to offer and try every medical procedure possible to slow down the inevitable.
And there is a lot to fear, too—not just in the inevitable—but in the choices we're given. Gawande doesn't shy away from how this topic hits close to home. His wife's grandmother and his own father are two people who are discussed intimately throughout the book. He weaves the stories about their health and decline with the stories of other patients and colleagues.
When describing how his own father struggled with the decision on whether to pursue more radiation therapy for a tumor growing in his spine, Gawande dwells on the tough decisions that needed to be made. His father had already undergone surgery to treat it, but things had taken a turn for the worse. Should he pursue more aggressive chemo, knowing the debilitating side effects that would happen? It is a question that faces many families when they sit in the doctor's office and have to weigh the tradeoffs. Having choices doesn't necessarily make it easier.
At the heart of the book is a searching exploration of what the basic purpose of medicine really is. What should we be paying doctors to do? Gawande writes: "Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don't want a general [a doctor] who fights to the point of total annihilation."
Fight to the bitter end… sadly, that's what most people try to do.
More and more, as the population in the U.S. gets older and as we live longer, we need more doctors and nurses like Gawande who will broach discussion and say what they have seen, to tell people how death in a hospital really is, how aging really is, and prepare us for what's to come.
So what needs to be done? Gawande suggests several things, and the message is clear: We need more of our institutions and medical practitioners to believe that we shouldn't limit people's choices in the name of safety but expand them, in the name of living a worthwhile life. We see this in the later chapters when we meet more enlightened practitioners and how they take a more patient-centric approach rather than a paternalistic one. There is a wonderful anecdote that involves a colorful menagerie and an idealistic country doctor.
While Gawande is critical and often frames his exploration of medicine in big socioeconomic and cultural terms, his arguments don't take sides. He doesn't write to bully or polarize; instead, he takes a deliberate, sometimes plodding "middle road." I sometimes wished he would be more scathing of some of the atrocious experiences he hears about and even witnesses. He doesn't loudly condemn bad decisions that were made in prescribing care or stripping away an elderly person's autonomy. Instead, what he is good at is to acknowledge uncertainty and ambiguity. All of us have underestimated the human element in medicine in some way.
An intense, thought-provoking read that made me more mindful about life—and the march toward the inevitable.
[Disclaimer: I received an ARC of this book from the publisher for an honest and candid review. This review was originally written for LibraryThing Early Reviewers.]
February 17, 2024
پیش از هرچیز بگویم که این کتاب از کتابهایی نیست که برای همه جذاب و دوستداشتنی باشد. به نظرم کتاب برای سه دستهی زیر جالبتر است و اگر جزو این دستهها هستید کتاب را پیشنهاد میکنم:
• اگر موضوع مرگ بخشی از افکار شماست و در کنار اهمیتی که برای خوب زندگی کردن قائل هستید، مرگ هم برایتان موضوع جالبی است.
• اگر شغل و پیشهای دارید که به هر نحو به سلامت سالمندان، کیفیت زندگی انسانها و مرگ مربوط میشود، از بهیار گرفته تا پزشک، از مسئول سردخانهی بیمارستان گرفته تا رئیس بیمارستان، از مسئول خانهی بهداشت محله گرفته تا وزیر بهداشت کشور!
• دور از جان شما و عزیزانتان، اگر خود یا بستگانتان دچار بیماری لاعلاجی شدهاید، سالمندی در بستر بیماری دارید یا تجربهی تلخی از مرگ کسی داشتهاید.
همینطور اگر جزو دو دستهی زیر هستید کتاب را به شما پیشنهاد نمیکنم:
• بخش عمدهی کتاب راجع به پیری و مرگ است. پس اگر اندیشیدن به پیری و مرگ در شما ایجاد اضطراب میکند، این کتاب به دردتان نمیخورد.
• کتاب کمی مباحث مربوط به پزشکی/سلامت دارد. البته خوشبختانه بیشتر اصطلاحات در پاورقی توضیح داده شده است و لازم نیست خواننده، دانش پزشکی آکادمیک داشته باشد. با این حال اگر به مسائل پزشکی علاقهمند نیستید کتاب را جذاب نخواهید یافت.
***
نشر ترجمان که سابقهی بدی در دستکاری عنوان کتابها دارد، عنوان «Being Mortal: Medicine and What Matters in the End» را به صورتی که میبینید ترجمه کرده که ترجمهی دقیقی نیست و عنوان اصلی، به محتوای کتاب مربوطتر و قشنگتر است.
چکیدهای از کتاب: دربارهی مرگ و در ستایش زندگی
نویسندهی کتاب، جراح آمریکایی هندی تبار است و بسیاری از مطالب کتاب، از تجربهها و خاطرات او در برخورد با بیماران آورده شده است. او در همان مقدمه، از دغدغهاش به عنوان یک پزشک پرده برمیدارد: این که موضوع مرگ و میرایی و سلامت سالمندان، در برنامهی آموزشی پزشکان آمریکایی، نقش کمرنگی دارد:
[۱]. خود مستقل
شرایط نگهداری از سالمندان در کشورهای مختلف، زمانهای مختلف، و فرهنگهای مختلف، متفاوت است.
در گذشته خانوادههای پرجمعیت وظیفهی نگهداری از سالمندان را برعهده میگرفتند. تعداد افراد کمی به سن پیری میرسیدند و پیران، احترام خاصی در خانواده و جامعه داشتند. این شیوه از مراقبت معایب و مزایای خاص خودش را داشت و هنوز هم در کشورهای سنتی مثل هند وجود دارد.
امروزه در جوامع مدرنتر، خانوادهها کمجمعیت شده، امید به زندگی افزایش یافته و بیشتر مردم، دوران پیری را تجربه خواهند کرد، حالا آسایشگاههای سالمندان بسیاری از مراقبتهای پیری را انجام میدهند و در کشورهای توسعهیافتهتر و ثروتمندتر مثل آمریکا، سالمندان میتوانند زندگی مستقل خود را داشته باشند و وابسته به مراقبت خانواده نباشند و این «حفظ استقلال» شاید بزرگترین فایده مدرنیزاسیون مراقبت از سالمندان باشد:
[۲]. همهچیز از هم میپاشد
این فصل به فرآیند پیری (aging) از نظر زیستشناختی پرداخته و نشان میدهد پیشرفتهای پزشکی چه تاثیری بر روند پیری انسانها گذاشته است و دانش پیریشناسی (gerontology) و پزشکان این حوزه (در ایران تقریباً معادل با متخصص طب سالمندان) چه اهمیتی دارند.
[۳]. وابستگی
بسیاری از سالمندان دغدغههای سادهای برای زندگی دارند: حفظ استقلال و وابسته نبود به دیگران، حفظ حریم خصوصیشان، کنترل داشتن روی امور زندگی و در نهایت کیفیت شرافتمندانهی زندگی و احساس مفید بودن.
این فصل کمی به تاریخچهی آسایشگاههای سالمندی میپردازد و شرح میدهد چگونه این آسایشگاهها و دیگر سرویسهایی که به سالمندان ارائه میشود میتوانند در راستای دغدغههای سالمندان باشند.
[۴]. یاری
این فصل دربارهی چالشهای سیاستگذاری آسایشگاههای سالمندان است. چطور در عین حال که محیط امنی برای سالمندان تهیه میکنیم، به آزادی و حریم خصوصی افراد هم احترام بگذاریم. چگونه بکوشیم «کیفیت شرافتمندانهی زندگی» آنها را حفظ کنیم.
[۵]. یک زندگی بهتر
آسایشگاههای سالمندان را میتوان به جای محلی برای مراقبت، به محلی برای زندگی با کیفیت تبدیل کرد. جایی که به نیاز بنیادین انسانها برای «یافتن دلیل موجهی برای زنده ماندن» پاسخ دهد. آمارها نشان میدهد این کار علاوه بر افزایش کیفیت زندگی سالمندان، باعث کاهش مرگ و میر آنها میشود.
[۶]. بگذار تا بمیرم
اقدامات پزشکی را تا کجا باید ادامه داد؟ آیا جان بیمار را به هر قیمتی باید حفظ کرد حتی اگر زندگی پر رنج و دردی را در ادامه تجربه کند؟ اولویت باید کدام باشد؟ بیمههای دولتی یا غیردولتی تا کجا باید به پرداخت هزینهها ادامه دهند؟ نقش انتخاب و تصمیم بیماران در این زمینه تا کجاست؟
[۷]. گفتوگوهای سخت
دربارهی چالشهای اخلاقی مراکز و مراقبتهای هاسپیس. (hospice که در تمام کتاب با تلفظ نادرست هوسپایس نوشته شده) این مراکز برای بیماریهای لاعلاج خدمات تسکینی (palliative care) ارائه میدهند تا از درد و رنج بیماران بکاهند.
درنهایت آیا یوتانازی(مرگ کمکی) راه حل مناسبی برای بیماران end-stage است؟ آیا یک «مرگ خوب» میتواند هدف سیستم بهداشتی/درمانی باشد؟
ایراد خاصی نمیتوانم به کتاب بگیرم، کتاب ساده و روان نوشته شده است و ترجمهی کتاب در کل قابل قبول است. کتاب، آموزشی یا آکادمیک نیست اگرچه مطالب علمی بسیاری هم در کتاب وجود دارد، قرار هم نیست خواننده به نتیجهگیری قطعی در همهی مسائل مطرح شده برسد. کتاب صرفا درددلهای یک پزشک در غالب جستار نویسی است و بیش از این ادعایی ندارد و صرفاً دیدگاههای جدیدی را پیش چشم خواننده میگذارد.
شاید میشد ۲۰-۱۰ درصد از حجم کتاب را کم کرد بدون اینکه به پیام کتاب لطمه بخورد. در ضمن بدم نمیآمد نویسنده با توجه به موضوع کتاب یک فصل کامل را به یوتانازی اختصاص دهد. ولی کتاب، فقط اشارهای گذرا به یوتانازی پسیو دارد و خدمات هاسپیس را هم اساسا نمیتوان یوتانازی حساب کرد.
با این حال فکر میکنم چنین ایراداتی، بیشتر اختلاف سلیقه باشند تا اشکال واقعی.
کتاب چند روزی فکر مرا به خود مشغول کرده بود و من برای چنین کتابهایی، ارزش زیادی قائلم.
پینوشت۱: یکی از مباحث مهم در اخلاق پزشکی، تفاوت health با well-being (نمیدانم در فارسی ترجمهی مناسب برای well-being چیست. بهروزی؟ حال خوب؟) و اهمیت کارهایی است که سیستم بهداشتی/درمانی باید برای افزایش well-being انجام دهد. این کتاب را هم میتوان کتاب جالبی دربارهی این موضوع به حساب آورد.
پینوشت۲: با توجه به افزایش جمعیت سالمند کشور در آینده چقدر دلم میخواست چنین مسائلی در جامعهی بهداشتی/درمانی/پزشکی کشور در سطوح مختلف مطرح میشد و مورد بحث قرار میگرفت، ولی شوربختانه وضعیت سیستم بهداشتی/درمانی مثل بسیاری از سیستمهای دیگر کشور چنان رو به افول است که پرداختن به چنین مسائلی از اولویت خارج شده. این هم باشد برای کشورهای نرمالتر با دغدغههای اولیهی کمتر...
• اگر موضوع مرگ بخشی از افکار شماست و در کنار اهمیتی که برای خوب زندگی کردن قائل هستید، مرگ هم برایتان موضوع جالبی است.
• اگر شغل و پیشهای دارید که به هر نحو به سلامت سالمندان، کیفیت زندگی انسانها و مرگ مربوط میشود، از بهیار گرفته تا پزشک، از مسئول سردخانهی بیمارستان گرفته تا رئیس بیمارستان، از مسئول خانهی بهداشت محله گرفته تا وزیر بهداشت کشور!
• دور از جان شما و عزیزانتان، اگر خود یا بستگانتان دچار بیماری لاعلاجی شدهاید، سالمندی در بستر بیماری دارید یا تجربهی تلخی از مرگ کسی داشتهاید.
همینطور اگر جزو دو دستهی زیر هستید کتاب را به شما پیشنهاد نمیکنم:
• بخش عمدهی کتاب راجع به پیری و مرگ است. پس اگر اندیشیدن به پیری و مرگ در شما ایجاد اضطراب میکند، این کتاب به دردتان نمیخورد.
• کتاب کمی مباحث مربوط به پزشکی/سلامت دارد. البته خوشبختانه بیشتر اصطلاحات در پاورقی توضیح داده شده است و لازم نیست خواننده، دانش پزشکی آکادمیک داشته باشد. با این حال اگر به مسائل پزشکی علاقهمند نیستید کتاب را جذاب نخواهید یافت.
***
نشر ترجمان که سابقهی بدی در دستکاری عنوان کتابها دارد، عنوان «Being Mortal: Medicine and What Matters in the End» را به صورتی که میبینید ترجمه کرده که ترجمهی دقیقی نیست و عنوان اصلی، به محتوای کتاب مربوطتر و قشنگتر است.
چکیدهای از کتاب: دربارهی مرگ و در ستایش زندگی
نویسندهی کتاب، جراح آمریکایی هندی تبار است و بسیاری از مطالب کتاب، از تجربهها و خاطرات او در برخورد با بیماران آورده شده است. او در همان مقدمه، از دغدغهاش به عنوان یک پزشک پرده برمیدارد: این که موضوع مرگ و میرایی و سلامت سالمندان، در برنامهی آموزشی پزشکان آمریکایی، نقش کمرنگی دارد:
توانایی علمی مدرن، راه و رسم زندگی آدمها را عمیقاً تغییر داده است. مردم بیشتر و بهتر از هر دورهی دیگری در تاریخ زندگی میکنند. اما پیشرفتهای علمی، فرآیند سالمندی و مرگ را به تجربههای پزشکی تبدیل کرده است، یعنی به اموری که باید به دست متخصصان مراقبتهای بهداشتی و سلامت اداره شوند. و به طرز هشدارآمیزی، معلوم شده که ما در این دنیای پزشکی آمادگی پذیرش چنین مسئولیتی را نداریم.
[۱]. خود مستقل
شرایط نگهداری از سالمندان در کشورهای مختلف، زمانهای مختلف، و فرهنگهای مختلف، متفاوت است.
در گذشته خانوادههای پرجمعیت وظیفهی نگهداری از سالمندان را برعهده میگرفتند. تعداد افراد کمی به سن پیری میرسیدند و پیران، احترام خاصی در خانواده و جامعه داشتند. این شیوه از مراقبت معایب و مزایای خاص خودش را داشت و هنوز هم در کشورهای سنتی مثل هند وجود دارد.
امروزه در جوامع مدرنتر، خانوادهها کمجمعیت شده، امید به زندگی افزایش یافته و بیشتر مردم، دوران پیری را تجربه خواهند کرد، حالا آسایشگاههای سالمندان بسیاری از مراقبتهای پیری را انجام میدهند و در کشورهای توسعهیافتهتر و ثروتمندتر مثل آمریکا، سالمندان میتوانند زندگی مستقل خود را داشته باشند و وابسته به مراقبت خانواده نباشند و این «حفظ استقلال» شاید بزرگترین فایده مدرنیزاسیون مراقبت از سالمندان باشد:
مدرنیزاسیون از شأن و جایگاه خانواده کاست، اما شأن و جایگاه سالمندی را از بین نبرد. یکی از انواع آزادیِ مدرن، آزادیای است که باعث میشود بار زندگی انسان کمتر از پیش بر عهدهی نسلهای دیگر باشد. احترام به سالمندان از بین رفته است، اما نه به خاطر اینکه احترام به جوانان جای آن نشسته، بلکه به این خاطر که با احترام به خودِ مستقل جایگزین شده است.
[۲]. همهچیز از هم میپاشد
این فصل به فرآیند پیری (aging) از نظر زیستشناختی پرداخته و نشان میدهد پیشرفتهای پزشکی چه تاثیری بر روند پیری انسانها گذاشته است و دانش پیریشناسی (gerontology) و پزشکان این حوزه (در ایران تقریباً معادل با متخصص طب سالمندان) چه اهمیتی دارند.
کار هر پزشکی حفظ کیفیت زندگی بیمار است، یعنی تا جایی که ممکن است از خرابکاریهای ناشی از بیماری جلوگیری کند، و علاوه بر آن، کارآمدی کافی برای مواجههی فعالانه با جهان را در بیمار حفظ کند. اکثر پزشکان به سراغ درمان بیماری میروند و بقیهی امور را وامینهند.
[۳]. وابستگی
بسیاری از سالمندان دغدغههای سادهای برای زندگی دارند: حفظ استقلال و وابسته نبود به دیگران، حفظ حریم خصوصیشان، کنترل داشتن روی امور زندگی و در نهایت کیفیت شرافتمندانهی زندگی و احساس مفید بودن.
این فصل کمی به تاریخچهی آسایشگاههای سالمندی میپردازد و شرح میدهد چگونه این آسایشگاهها و دیگر سرویسهایی که به سالمندان ارائه میشود میتوانند در راستای دغدغههای سالمندان باشند.
[۴]. یاری
این فصل دربارهی چالشهای سیاستگذاری آسایشگاههای سالمندان است. چطور در عین حال که محیط امنی برای سالمندان تهیه میکنیم، به آزادی و حریم خصوصی افراد هم احترام بگذاریم. چگونه بکوشیم «کیفیت شرافتمندانهی زندگی» آنها را حفظ کنیم.
[۵]. یک زندگی بهتر
آسایشگاههای سالمندان را میتوان به جای محلی برای مراقبت، به محلی برای زندگی با کیفیت تبدیل کرد. جایی که به نیاز بنیادین انسانها برای «یافتن دلیل موجهی برای زنده ماندن» پاسخ دهد. آمارها نشان میدهد این کار علاوه بر افزایش کیفیت زندگی سالمندان، باعث کاهش مرگ و میر آنها میشود.
[۶]. بگذار تا بمیرم
اقدامات پزشکی را تا کجا باید ادامه داد؟ آیا جان بیمار را به هر قیمتی باید حفظ کرد حتی اگر زندگی پر رنج و دردی را در ادامه تجربه کند؟ اولویت باید کدام باشد؟ بیمههای دولتی یا غیردولتی تا کجا باید به پرداخت هزینهها ادامه دهند؟ نقش انتخاب و تصمیم بیماران در این زمینه تا کجاست؟
[۷]. گفتوگوهای سخت
دربارهی چالشهای اخلاقی مراکز و مراقبتهای هاسپیس. (hospice که در تمام کتاب با تلفظ نادرست هوسپایس نوشته شده) این مراکز برای بیماریهای لاعلاج خدمات تسکینی (palliative care) ارائه میدهند تا از درد و رنج بیماران بکاهند.
درنهایت آیا یوتانازی(مرگ کمکی) راه حل مناسبی برای بیماران end-stage است؟ آیا یک «مرگ خوب» میتواند هدف سیستم بهداشتی/درمانی باشد؟
تا سال ۲۰۱۲ از هر هلندی یک نفر مرگ خود را به شکل خودکشی کمکی میداند. به نظر میرسد این عدد نه آمار موفقیت، بلکه آمار ناکامی باشد. زیرا هدف غایی ما نه مرگ خوب بلکه زندگی خوب تا آخرین لحظه است.
ایراد خاصی نمیتوانم به کتاب بگیرم، کتاب ساده و روان نوشته شده است و ترجمهی کتاب در کل قابل قبول است. کتاب، آموزشی یا آکادمیک نیست اگرچه مطالب علمی بسیاری هم در کتاب وجود دارد، قرار هم نیست خواننده به نتیجهگیری قطعی در همهی مسائل مطرح شده برسد. کتاب صرفا درددلهای یک پزشک در غالب جستار نویسی است و بیش از این ادعایی ندارد و صرفاً دیدگاههای جدیدی را پیش چشم خواننده میگذارد.
شاید میشد ۲۰-۱۰ درصد از حجم کتاب را کم کرد بدون اینکه به پیام کتاب لطمه بخورد. در ضمن بدم نمیآمد نویسنده با توجه به موضوع کتاب یک فصل کامل را به یوتانازی اختصاص دهد. ولی کتاب، فقط اشارهای گذرا به یوتانازی پسیو دارد و خدمات هاسپیس را هم اساسا نمیتوان یوتانازی حساب کرد.
با این حال فکر میکنم چنین ایراداتی، بیشتر اختلاف سلیقه باشند تا اشکال واقعی.
کتاب چند روزی فکر مرا به خود مشغول کرده بود و من برای چنین کتابهایی، ارزش زیادی قائلم.
پینوشت۱: یکی از مباحث مهم در اخلاق پزشکی، تفاوت health با well-being (نمیدانم در فارسی ترجمهی مناسب برای well-being چیست. بهروزی؟ حال خوب؟) و اهمیت کارهایی است که سیستم بهداشتی/درمانی باید برای افزایش well-being انجام دهد. این کتاب را هم میتوان کتاب جالبی دربارهی این موضوع به حساب آورد.
پینوشت۲: با توجه به افزایش جمعیت سالمند کشور در آینده چقدر دلم میخواست چنین مسائلی در جامعهی بهداشتی/درمانی/پزشکی کشور در سطوح مختلف مطرح میشد و مورد بحث قرار میگرفت، ولی شوربختانه وضعیت سیستم بهداشتی/درمانی مثل بسیاری از سیستمهای دیگر کشور چنان رو به افول است که پرداختن به چنین مسائلی از اولویت خارج شده. این هم باشد برای کشورهای نرمالتر با دغدغههای اولیهی کمتر...
November 4, 2015
This excellent book is about how medicine treats patients as their lives come to an end. Today, Western medicine is all about keeping the patient alive, no matter the cost. The problem is that all too often, treatments at the end of life have limited value; they have little potential to prolong substantially, and even if they do, the quality of life is degraded significantly. Gawande, a practicing surgeon argues that the waning days of our lives "... are spent in institutions--nursing homes and intensive care units--where regimented, anonymous routines cut us off from all the things that matter to us in life."
As the end draws near, some doctors go into an "informational mode". They give their patients a list of possible treatments, potential outcomes and side effects. It is really a mountain of information and very difficult for a suffering patient--or a family--to process and make a useful decision. Gawande describes a better approach. He writes about how some doctors will talk to their patients about their goals; realistic goals, given their illnesses. They take one or two hours to understand what is important to their patients, and then bring to the forefront a treatment option that will get them closest to their goals. The most important thing for every human is "... to retain the autonomy--the freedom--to be authors of our lives. This is the very marrow of being human." Terminally ill patients who had discussions with their doctor about end-of-life preferences were far more likely to die at peace, and to spare their family anguish.
Gawande writes at length about assisted living and nursing homes. Too often, these institutions seem to believe that their primary job is safety. But, fortunately, an increasing number of these institutions "... believe their job is not to confine people's choices, in the name of safety, but to expand them, in the name of living a worthwhile life."
So often, terminally ill cancer patients who had intensive interventions had a much worse quality of life in their last week, compared to those who did not have interventions. Moreover, six months later, their caregivers were three times more likely to suffer major depressions! So, Gawande describes the recent institution of hospice care. "The difference between standard medical care and hospice is not the difference between treating and doing nothing .... The difference was in the priorities. In ordinary medicine, the goal is to extend life. We'll sacrifice the quality of ... existence now--by performning surgery, providing chemotherapy, putting you in intensive care--for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains and social workers to help people with a fatal illness have the fullest possible lives right now ... they focus of objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while." Studies show that patients who choose to supplement regular oncology treatments with palliative care stopped chemotherapy sooner, entered hospice care sooner, had less suffering--and lived 25% longer!
On average, doctors overestimate the time remaining for terminally ill patients by 30%. In addition, 40% of oncologists offer treatments they believe will not work! They worry about being too pessimistic, not about being too optimistic. Gawande describes experimental programs that give patients and their families a false hope. But these experimental treatments often have debilitating side effects with very little chance of working.
Gawande writes that our medical system and culture is built around the "long tail" of an improbable long life after a cancer diagnosis. The multi-trillion dollar medical system is the equivalent of lottery tickets. The problem is the system does not "... prepare patients for the near certainty that those tickets will not win."
Gawande adds wonderful personal touches throughout the book. Through a number of anecdotal histories, he traces the end-of-life treatments and outcomes. He even details the final months, weeks and days of his father's life. He shows clearly how much better it is for terminally ill patients to communicate with their doctor, to let their doctor understand their goals, get the right type of advice, and to understand when it is best to "let go".
As the end draws near, some doctors go into an "informational mode". They give their patients a list of possible treatments, potential outcomes and side effects. It is really a mountain of information and very difficult for a suffering patient--or a family--to process and make a useful decision. Gawande describes a better approach. He writes about how some doctors will talk to their patients about their goals; realistic goals, given their illnesses. They take one or two hours to understand what is important to their patients, and then bring to the forefront a treatment option that will get them closest to their goals. The most important thing for every human is "... to retain the autonomy--the freedom--to be authors of our lives. This is the very marrow of being human." Terminally ill patients who had discussions with their doctor about end-of-life preferences were far more likely to die at peace, and to spare their family anguish.
Gawande writes at length about assisted living and nursing homes. Too often, these institutions seem to believe that their primary job is safety. But, fortunately, an increasing number of these institutions "... believe their job is not to confine people's choices, in the name of safety, but to expand them, in the name of living a worthwhile life."
So often, terminally ill cancer patients who had intensive interventions had a much worse quality of life in their last week, compared to those who did not have interventions. Moreover, six months later, their caregivers were three times more likely to suffer major depressions! So, Gawande describes the recent institution of hospice care. "The difference between standard medical care and hospice is not the difference between treating and doing nothing .... The difference was in the priorities. In ordinary medicine, the goal is to extend life. We'll sacrifice the quality of ... existence now--by performning surgery, providing chemotherapy, putting you in intensive care--for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains and social workers to help people with a fatal illness have the fullest possible lives right now ... they focus of objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while." Studies show that patients who choose to supplement regular oncology treatments with palliative care stopped chemotherapy sooner, entered hospice care sooner, had less suffering--and lived 25% longer!
On average, doctors overestimate the time remaining for terminally ill patients by 30%. In addition, 40% of oncologists offer treatments they believe will not work! They worry about being too pessimistic, not about being too optimistic. Gawande describes experimental programs that give patients and their families a false hope. But these experimental treatments often have debilitating side effects with very little chance of working.
Gawande writes that our medical system and culture is built around the "long tail" of an improbable long life after a cancer diagnosis. The multi-trillion dollar medical system is the equivalent of lottery tickets. The problem is the system does not "... prepare patients for the near certainty that those tickets will not win."
Gawande adds wonderful personal touches throughout the book. Through a number of anecdotal histories, he traces the end-of-life treatments and outcomes. He even details the final months, weeks and days of his father's life. He shows clearly how much better it is for terminally ill patients to communicate with their doctor, to let their doctor understand their goals, get the right type of advice, and to understand when it is best to "let go".
December 28, 2019
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★ During one of my latest classes, the instructor divided us into groups and gave us controversial topics to discuss. My group discussed Euthanasia and although this book does not discuss that. It focuses on some of the subjects that we approached that day such as the end of life and what our job as doctors is.
★ The book is very accessible to both workers in the medical field and to the general population and that is a great thing! Being Human (Smart title by the way) means that there is an end point somewhere in the future and that both of the two teams have specific roles when it comes to that.
★ The author uses real life examples and scientific studies and even shares his father story with readers all over the world which is a very brave thing to do! There are things that I may have not thought about previously and this book was eye-opening to those. Some patients think that their doctors have to take choices for them while in fact it is a shared process. Also we have to know our limitations as doctors and when to stop!
★ There are books that I read and forget and there are books that stays with me for a long time and shapes the way I behave and function and this is one of them! I think everyone should read this book although it can be hard and heavy but it is a fact that we can’t deny and to discuss it while we are fully functioning is better than to do it in the last hours! I recommend this for all my fellow mortal readers.
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“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.”
★ During one of my latest classes, the instructor divided us into groups and gave us controversial topics to discuss. My group discussed Euthanasia and although this book does not discuss that. It focuses on some of the subjects that we approached that day such as the end of life and what our job as doctors is.
★ The book is very accessible to both workers in the medical field and to the general population and that is a great thing! Being Human (Smart title by the way) means that there is an end point somewhere in the future and that both of the two teams have specific roles when it comes to that.
★ The author uses real life examples and scientific studies and even shares his father story with readers all over the world which is a very brave thing to do! There are things that I may have not thought about previously and this book was eye-opening to those. Some patients think that their doctors have to take choices for them while in fact it is a shared process. Also we have to know our limitations as doctors and when to stop!
★ There are books that I read and forget and there are books that stays with me for a long time and shapes the way I behave and function and this is one of them! I think everyone should read this book although it can be hard and heavy but it is a fact that we can’t deny and to discuss it while we are fully functioning is better than to do it in the last hours! I recommend this for all my fellow mortal readers.
“Our ultimate goal, after all, is not a good death but a good life to the very end.”
You can get more books from Book Depository
January 27, 2019
Depressing, but necessary to consider and talk about. What's the one unfortunate thing everyone on this planet has in common right now? We will all eventually die one day. So knowing that eventuality, why do we not plan for and discuss how we want to spend our final years/months/weeks/days? If we are fortunate enough to go the way of a steady decline via old age, how can we maintain our enjoyment of life as we become less able to meet our own needs independently without burdening our loved ones? If faced with a terminal prognosis, how do you weigh interventions that can possibly extend quantity of life versus those that can extend quality of life? These questions and more are covered in this book, with sobering real life examples, some of which come from the author's own family. I found this book to be informative and hopefully useful at some point in the very distant future. A must read for everyone, though perhaps delay doing so if there has been a recent death in your life, as this would probably be harder to read emotionally.
October 7, 2022
I appreciated Atul Gawande’s message that we should talk more about death and dying earlier on in our lives instead of avoiding the subject. His deep dive into the stories of elderly people living in nursing homes/assisted living helped me gain greater knowledge about what end-of-life scenarios may look like. I walked away from this book understanding more about the importance of autonomy and meaning for elderly people. I also did get a bit teary-eyed reading about Gawande’s father’s passing.
My two main critiques of this book center on its writing style and its lack of attention to sociocultural factors. First, the actual writing of Being Mortal felt so dry to me – the topics are of great importance, yet I felt like the tone vacillated between journalism and creative nonfiction and didn’t really land on either. Second, I found it odd that Gawande didn’t discuss or at least mention cultures in which talking about grief and death are more normalized (e.g., Native American culture). Furthermore, he didn’t discuss how lack of access to healthcare due to socioeconomic constraints or other barriers (e.g., racism in healthcare) affect issues of death and dying. Even a paragraph that honored these important factors would have elevated this book for me.
My two main critiques of this book center on its writing style and its lack of attention to sociocultural factors. First, the actual writing of Being Mortal felt so dry to me – the topics are of great importance, yet I felt like the tone vacillated between journalism and creative nonfiction and didn’t really land on either. Second, I found it odd that Gawande didn’t discuss or at least mention cultures in which talking about grief and death are more normalized (e.g., Native American culture). Furthermore, he didn’t discuss how lack of access to healthcare due to socioeconomic constraints or other barriers (e.g., racism in healthcare) affect issues of death and dying. Even a paragraph that honored these important factors would have elevated this book for me.
May 14, 2015
A very eye opening book on aging, what happens as we age, and where do we go, when we can no longer take care of ourselves. This book asks some very interesting questions, makes one really think about the importance of making these decisions while one is still able. What is important to us, what are we willing to give up, are some of those questions.
The writing is clear, and concise, the information extensive but not at all confusing. The people whose life's are presented are treated as real people, not just case studies. One person is very close to the author and we see all the decision making that goes into his final acceptance. Sad, yes sometimes, but we are all going to age, no matter where we live and this book covers so much. I consider it a must read, a gaining of intelligence and a new way of looking at many things. Wonderful book.
The writing is clear, and concise, the information extensive but not at all confusing. The people whose life's are presented are treated as real people, not just case studies. One person is very close to the author and we see all the decision making that goes into his final acceptance. Sad, yes sometimes, but we are all going to age, no matter where we live and this book covers so much. I consider it a must read, a gaining of intelligence and a new way of looking at many things. Wonderful book.
March 28, 2015
2.5 stars. Gawande has about three major points in this book, all of which were made in a news magazine article he wrote for the Atlantic: 1, We should have tough conversations with those in our lives about their vision for their end-of-life; 2, Doctors should also have these conversations with their patients; and 3, If we have these conversations, we can shift medicine and end-of-life care away from a stave-off-death model and towards a model that promotes humanity, autonomy, and dignity for the dying (and thus no longer need institutional nursing homes). I do not disagree, but the book itself is heavy on anecdotes and light on actual research or policy analysis.
My major stylistic critique is that Gawande buries his three points in pages of anecdotes about patients and memories of his own father's decline and death. I'm not being unsympathetic to the suffering of these colorful characters (and Gawande's own personal suffering), but I found the anecdotes long-winded, distracting, and ultimately boring. Gawande intended them to have emotional impact for the reader, but for me, the stories smacked of filling pages for the pure commercial gain of selling a book.
My major substantive critique is that Gawande spends too little time on policy, instead championing the heroism of individual doctors, caregivers, and entrepreneurs-- as if the system can be saved by some brave individuals. He is far too sanguine about the difficulty of changing institutions at the macro-level. Yes, Gawande mentions that these alternative living arrangements and alternative therapeutic approaches save money in the long run, but most of the initiatives Gawande covers were developed by private entrepreneurs, not governments (though some government funds may have been made available in the form of grants). Dramatic policy change would be needed to scale and fund these initiatives at the state or federal level, and I do not see the current vested interests in the healthcare lobby supporting these changes (nor does Gawande provide a path for fighting for policy change, besides mentioning the cost-effectiveness argument). The one scale-able initiative that Gawande discusses, Hospice, already exists-- but Gawande ignores that Hospice's ranks are often filled with low-skilled, under-paid, and over-worked caregivers who are hardly in the position to give the attentive, individualized care that Gawande received for his father.
Gawande is also too sanguine about the role of socioeconomic class, which is perhaps why his friends and his patients receive such excellent care. He is wrapped in a bubble of privilege -- access to the top surgeons and the most committed nurses. True, some of the alternative homes that Gawande mentions do take Medicaid, but these homes are so few that they have waitlists that are hundreds of names long. The type of "better death" that Gawande argues for so eloquently is available only to the wealthiest or the most educated (those empowered to fight the system and search for better options). Without a serious treatment of the nexus between healthcare policy, quality of life, and socioeconomic status, this book seems to me squarely in the realm of theory, not practice.
My major stylistic critique is that Gawande buries his three points in pages of anecdotes about patients and memories of his own father's decline and death. I'm not being unsympathetic to the suffering of these colorful characters (and Gawande's own personal suffering), but I found the anecdotes long-winded, distracting, and ultimately boring. Gawande intended them to have emotional impact for the reader, but for me, the stories smacked of filling pages for the pure commercial gain of selling a book.
My major substantive critique is that Gawande spends too little time on policy, instead championing the heroism of individual doctors, caregivers, and entrepreneurs-- as if the system can be saved by some brave individuals. He is far too sanguine about the difficulty of changing institutions at the macro-level. Yes, Gawande mentions that these alternative living arrangements and alternative therapeutic approaches save money in the long run, but most of the initiatives Gawande covers were developed by private entrepreneurs, not governments (though some government funds may have been made available in the form of grants). Dramatic policy change would be needed to scale and fund these initiatives at the state or federal level, and I do not see the current vested interests in the healthcare lobby supporting these changes (nor does Gawande provide a path for fighting for policy change, besides mentioning the cost-effectiveness argument). The one scale-able initiative that Gawande discusses, Hospice, already exists-- but Gawande ignores that Hospice's ranks are often filled with low-skilled, under-paid, and over-worked caregivers who are hardly in the position to give the attentive, individualized care that Gawande received for his father.
Gawande is also too sanguine about the role of socioeconomic class, which is perhaps why his friends and his patients receive such excellent care. He is wrapped in a bubble of privilege -- access to the top surgeons and the most committed nurses. True, some of the alternative homes that Gawande mentions do take Medicaid, but these homes are so few that they have waitlists that are hundreds of names long. The type of "better death" that Gawande argues for so eloquently is available only to the wealthiest or the most educated (those empowered to fight the system and search for better options). Without a serious treatment of the nexus between healthcare policy, quality of life, and socioeconomic status, this book seems to me squarely in the realm of theory, not practice.
March 23, 2020
In our anesthetic world sometimes melodrama can be a way to access what we feel. When grandpa died, I wept in the shower, I took long walks engulfed by the wind. One night I lay on the kitchen floor for hours. On those tiles I learned that there is no other side of grief — loss, it just perforates us. You begin to recognize the primordial poetry of an open mouth: absence and presence in one.
Growing up every time we drove by the nursing home my grandma would say a prayer. I never understood “never” like that look: her terror, her sympathy. After surrendering to it, my grief became gratitude. How lucky was I to be there? -- to witness the shaky elegance of his unbecoming? How fortunate was I to be the confidant he told about his desire to go?
In his book, Gawande exposes how modern medicine has erased traditions around morality that help us understand how there are some forms of living which can be more painful than dying. With the imposition of the nuclear family over more extensive community, elder care work is outsourced to sterile and isolating institutions. Gawande questions Western medicine’s salvific function -- its imperative on maintaining life -- without interrogating what quality of life, and what the patient wants in the first place. Doctors are trained in the technicalities of aging — accumulation of lipofuscin, DNA mutation — but not the affects of it. He encourages us to imagine another form of medicine: one in which we ask people what gives their lives meaning? It’s the distinction between living and existing. Health just can’t be about the body, it has to consider the psyche. Ultimately, I was able to accept my grandpa’s death because I knew that prolonging his life would mean incalculable suffering: the inability to speak, write, read, all very things that he loved.
Read this not for comfort, but for conviction. His book is less dynamic to read as it is to apply and propel conversations that have been put off. Occasionally his provocations outrun his prose and his compassion gets lost with so many case studies. But it’s important in the way confronting inconvenient things are: it’s less about the beauty, and more about the lesson.
Growing up every time we drove by the nursing home my grandma would say a prayer. I never understood “never” like that look: her terror, her sympathy. After surrendering to it, my grief became gratitude. How lucky was I to be there? -- to witness the shaky elegance of his unbecoming? How fortunate was I to be the confidant he told about his desire to go?
In his book, Gawande exposes how modern medicine has erased traditions around morality that help us understand how there are some forms of living which can be more painful than dying. With the imposition of the nuclear family over more extensive community, elder care work is outsourced to sterile and isolating institutions. Gawande questions Western medicine’s salvific function -- its imperative on maintaining life -- without interrogating what quality of life, and what the patient wants in the first place. Doctors are trained in the technicalities of aging — accumulation of lipofuscin, DNA mutation — but not the affects of it. He encourages us to imagine another form of medicine: one in which we ask people what gives their lives meaning? It’s the distinction between living and existing. Health just can’t be about the body, it has to consider the psyche. Ultimately, I was able to accept my grandpa’s death because I knew that prolonging his life would mean incalculable suffering: the inability to speak, write, read, all very things that he loved.
Read this not for comfort, but for conviction. His book is less dynamic to read as it is to apply and propel conversations that have been put off. Occasionally his provocations outrun his prose and his compassion gets lost with so many case studies. But it’s important in the way confronting inconvenient things are: it’s less about the beauty, and more about the lesson.
June 10, 2015
It took me months to find the courage to read this. I know it is silly to be scared of a book, but the topic of mortality is so depressing that I dreaded reading it.
I had even checked out the book from the library several times, read a page or two, and then promptly returned it, thinking I would try again at some undetermined date, when I was a more evolved human being and better able to cope with illness and death and dying. (Future-Diane is very assertive and poised, apparently.)
But this book continued to niggle at me. I felt obligated to read it because I suspected it could help me cope with aging relatives. And yet I resisted, weeks turning into months.
The solution was found in an audiobook. I've discovered that listening to audiobooks on my daily commute is an excellent way to get into works I might otherwise not have the patience or fortitude to read.
You can imagine my relief when this book turned out not to be scary at all. In fact, it was a bit bland. It begins well enough: "I learned about a lot of things in medical school, but mortality wasn't one of them."
Gawande explains that historically, the elderly lived with extended families and died at home. This was the way it worked for hundreds of years. But the more a country industrializes, the more change occurs. Now the common practice in America is for the elderly to be moved into nursing homes or assisted-living places. Some still live with families, but eventually, it becomes a medical issue.
Gawande discusses the history of assisted-living places and nursing homes, and mentions research that shows ways to improve the quality of life for patients, such as giving them responsibility (taking care of a pet or plant, for example) and making sure there is enough social activity in the building. He also shares numerous stories of patients and how they coped with illness or end-of-life practices. This is where my interest started to wane -- there were just too many cases, and the book felt padded. I wondered if the whole book could have been edited down into a New Yorker-type magazine article, which would have been more efficient and effective.
My favorite section was when Gawande shared the story of his father's illness, and how that was handled. His father was a respected surgeon, and when he was diagnosed with brain cancer, some profound decisions had to be made. Gawande is a good writer and is skilled at explaining medical terms and processes to the layperson. Here he also shared his personal feelings, and it was quite moving.
Another good section was the advice Gawande gives on talking with patients about what their priorities are. For example, one man who was facing a serious surgery told his wife that what mattered to him was being able to watch football and eat chocolate ice cream. As long as he could still do that, he wanted the doctors to do everything they could to save his life. In another example, Gawande's father said it was still important for him to be able to visit with people, and he was scared of becoming paralyzed. Talking with someone about what they value most in life can assist with making better medical choices.
I would recommend Being Mortal to those interested in reading more about end-of-life decisions. And don't be scared -- this book doesn't bite.
My rating: 3.5 stars rounded up to 4
Favorite Story
[Gawande's father wanted his body cremated and his ashes spread in the Ganges River, which is sacred to Hindus, so a few months after his death the family traveled to Varanasi]
"As the oldest male in the family, I was called upon to assist with the rituals required for my father to achieve moksha -- liberation from the endless earthly cycle of death and rebirth to ascent to nirvana. The pandit twisted a ring of twine onto the fourth finger of my right hand. He had me hold the palm-size brass urn that contained my father's ashes and sprinkle into it herbal medicines, flowers, and morsels of food: a betel nut, rice, currants, rock crystal sugar, tumeric. He then had the other members of the family do the same. We burned incense and wafted the smoke over the ashes. The pandit reached over the bow with a small cup and had me drink three tiny spoons of Ganga water. Then he told me to throw the urn's dusty contents over my right shoulder into the river, followed by the urn itself and its cap. 'Don't look,' he admonished me in English, and I didn't.
"It's hard to raise a good Hindu in small-town Ohio, no matter how much my parents tried. I was not much of a believer in the idea of gods controlling people's fates and did not suppose that anything we were doing was going to offer my father a special place in any afterworld. The Ganges might have been sacred to one of the world's largest religions, but to me, the doctor, it was more notable as one of the world's most polluted rivers, thanks in part to all the incompletely cremated bodies that had been thrown into it. Knowing that I'd have to take those little sips of river water, I had looked up the bacterial counts on a Web site beforehand and premedicated myself with the appropriate antibiotics. (Even so, I developed a Giardia infection, having forgotten to consider the possibility of parasites.)
"Yet I was still intensely moved and grateful to have gotten to do my part. For one, my father had wanted it, and my mother and sister did, too. Moreover, although I didn't feel my dad was anywhere in that cup and a half of gray, powdery ash, I felt that we'd connected him to something far bigger than ourselves, in this place where people had been performing these rituals for so long."
I had even checked out the book from the library several times, read a page or two, and then promptly returned it, thinking I would try again at some undetermined date, when I was a more evolved human being and better able to cope with illness and death and dying. (Future-Diane is very assertive and poised, apparently.)
But this book continued to niggle at me. I felt obligated to read it because I suspected it could help me cope with aging relatives. And yet I resisted, weeks turning into months.
The solution was found in an audiobook. I've discovered that listening to audiobooks on my daily commute is an excellent way to get into works I might otherwise not have the patience or fortitude to read.
You can imagine my relief when this book turned out not to be scary at all. In fact, it was a bit bland. It begins well enough: "I learned about a lot of things in medical school, but mortality wasn't one of them."
Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the process of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it.
Gawande explains that historically, the elderly lived with extended families and died at home. This was the way it worked for hundreds of years. But the more a country industrializes, the more change occurs. Now the common practice in America is for the elderly to be moved into nursing homes or assisted-living places. Some still live with families, but eventually, it becomes a medical issue.
Increasingly large numbers of us get to live out a full life span and die of old age. Old age is not a diagnosis. There is always some final proximate cause that gets written down on the death certificate — respiratory failure, cardiac arrest. But in truth no single disease leads to the end; the culprit is just the accumulated crumbling of one's bodily systems while medicine carries out its maintenance measures and patch jobs. We reduce the blood pressure here, beat back the osteoporosis there, control this disease, track that one, replace a failed joint, valve, piston, watch the central processing unit gradually give out. The curve of life becomes a long, slow fade.
Gawande discusses the history of assisted-living places and nursing homes, and mentions research that shows ways to improve the quality of life for patients, such as giving them responsibility (taking care of a pet or plant, for example) and making sure there is enough social activity in the building. He also shares numerous stories of patients and how they coped with illness or end-of-life practices. This is where my interest started to wane -- there were just too many cases, and the book felt padded. I wondered if the whole book could have been edited down into a New Yorker-type magazine article, which would have been more efficient and effective.
My favorite section was when Gawande shared the story of his father's illness, and how that was handled. His father was a respected surgeon, and when he was diagnosed with brain cancer, some profound decisions had to be made. Gawande is a good writer and is skilled at explaining medical terms and processes to the layperson. Here he also shared his personal feelings, and it was quite moving.
Another good section was the advice Gawande gives on talking with patients about what their priorities are. For example, one man who was facing a serious surgery told his wife that what mattered to him was being able to watch football and eat chocolate ice cream. As long as he could still do that, he wanted the doctors to do everything they could to save his life. In another example, Gawande's father said it was still important for him to be able to visit with people, and he was scared of becoming paralyzed. Talking with someone about what they value most in life can assist with making better medical choices.
I would recommend Being Mortal to those interested in reading more about end-of-life decisions. And don't be scared -- this book doesn't bite.
My rating: 3.5 stars rounded up to 4
Favorite Story
[Gawande's father wanted his body cremated and his ashes spread in the Ganges River, which is sacred to Hindus, so a few months after his death the family traveled to Varanasi]
"As the oldest male in the family, I was called upon to assist with the rituals required for my father to achieve moksha -- liberation from the endless earthly cycle of death and rebirth to ascent to nirvana. The pandit twisted a ring of twine onto the fourth finger of my right hand. He had me hold the palm-size brass urn that contained my father's ashes and sprinkle into it herbal medicines, flowers, and morsels of food: a betel nut, rice, currants, rock crystal sugar, tumeric. He then had the other members of the family do the same. We burned incense and wafted the smoke over the ashes. The pandit reached over the bow with a small cup and had me drink three tiny spoons of Ganga water. Then he told me to throw the urn's dusty contents over my right shoulder into the river, followed by the urn itself and its cap. 'Don't look,' he admonished me in English, and I didn't.
"It's hard to raise a good Hindu in small-town Ohio, no matter how much my parents tried. I was not much of a believer in the idea of gods controlling people's fates and did not suppose that anything we were doing was going to offer my father a special place in any afterworld. The Ganges might have been sacred to one of the world's largest religions, but to me, the doctor, it was more notable as one of the world's most polluted rivers, thanks in part to all the incompletely cremated bodies that had been thrown into it. Knowing that I'd have to take those little sips of river water, I had looked up the bacterial counts on a Web site beforehand and premedicated myself with the appropriate antibiotics. (Even so, I developed a Giardia infection, having forgotten to consider the possibility of parasites.)
"Yet I was still intensely moved and grateful to have gotten to do my part. For one, my father had wanted it, and my mother and sister did, too. Moreover, although I didn't feel my dad was anywhere in that cup and a half of gray, powdery ash, I felt that we'd connected him to something far bigger than ourselves, in this place where people had been performing these rituals for so long."
June 12, 2019
Not many of us relish the idea of growing old, our bodies slowly breaking down, becoming weaker and weaker. Losing your teeth and your eye sight dimming. Having aches and pains and trouble getting out of bed. Your memory and thought processes declining, becoming less and less clear. There is not much fun in this and yet far fewer of us would prefer the alternative -- to not age, to die young.
Depressing but important and informative, Being Mortal: Medicine and What Matters in the End is about the aging process and our mortality. Dr. Atul Gawande discusses what happens as we age and how we in the West treat the elderly. He argues that quality of life should be the medical profession's aim. When there is no cure for a person, why use every possible treatment to prolong a person's life at the expense of the quality of the time they have left? He calls for a change in how we handle old age and the end of life in order to cause less suffering, even if it means the person will have a few months fewer to live. Doctors, not wanting to admit defeat, will often recommend procedures and surgeries that will cause no small amount of suffering. The patients and their families, thinking there is some hope after all, often agree to these treatments. Instead, we should aim to lessen suffering, and to allow people to die with as much dignity as possible.
This book really opened my eyes to what it's like to be in a nursing home. For most patients, they are basically a prison. Unfortunately, many people become unable to stay at home alone or to take care of all their own basic needs and end up in one. Dr. Gawande discusses alternative homes and hospice, which are much more compassionate and that let the elderly feel more comfortable.
I could have done with fewer human interest stories and more facts, as he talks about many individuals and relates their stories. There was quite a bit of repetition because of this and so I think maybe 3 or 4 people's stories would have been sufficient. I loved all the facts, depressing as they are. Unless we die young, we are all going to one day become old. Our bodies and brains will deteriorate, weakening and worsening until we finally succumb to death. Not much fun about that. However, thinking about these things ahead of time, we can prepare for the time when we no longer can take care of ourselves. We also can become more compassionate towards those who are already elderly. We can change how we treat them, becoming more compassionate in the process.
This is an important book for all of us to read, but don't expect to feel an overabundance of joy whilst doing so.
Depressing but important and informative, Being Mortal: Medicine and What Matters in the End is about the aging process and our mortality. Dr. Atul Gawande discusses what happens as we age and how we in the West treat the elderly. He argues that quality of life should be the medical profession's aim. When there is no cure for a person, why use every possible treatment to prolong a person's life at the expense of the quality of the time they have left? He calls for a change in how we handle old age and the end of life in order to cause less suffering, even if it means the person will have a few months fewer to live. Doctors, not wanting to admit defeat, will often recommend procedures and surgeries that will cause no small amount of suffering. The patients and their families, thinking there is some hope after all, often agree to these treatments. Instead, we should aim to lessen suffering, and to allow people to die with as much dignity as possible.
This book really opened my eyes to what it's like to be in a nursing home. For most patients, they are basically a prison. Unfortunately, many people become unable to stay at home alone or to take care of all their own basic needs and end up in one. Dr. Gawande discusses alternative homes and hospice, which are much more compassionate and that let the elderly feel more comfortable.
I could have done with fewer human interest stories and more facts, as he talks about many individuals and relates their stories. There was quite a bit of repetition because of this and so I think maybe 3 or 4 people's stories would have been sufficient. I loved all the facts, depressing as they are. Unless we die young, we are all going to one day become old. Our bodies and brains will deteriorate, weakening and worsening until we finally succumb to death. Not much fun about that. However, thinking about these things ahead of time, we can prepare for the time when we no longer can take care of ourselves. We also can become more compassionate towards those who are already elderly. We can change how we treat them, becoming more compassionate in the process.
This is an important book for all of us to read, but don't expect to feel an overabundance of joy whilst doing so.
Read
November 10, 2016Highly recommended.
Being Mortal: Medicine and What Matters in the End
The final words in this title What Matters in the End could as easily be a statement as a question and sets the theme for this exploration of living and dying. Mortal we are and yet its hard to embrace this concept especially when we are closer to our end than at its beginning. It may be true that we do not know when we’re going to die but frankly some of us know it will be sooner than later. We plan for so many things in our lives yet leave this most needed planning, that of the way we wish to die, what matters in the end, left unspoken, left undone.
Atul Gawande is to be commended for sharing stories of his patients and family as they seek the answers to the questions of life’s final moments. As a doctor he felt he was treating the illness but not the person, often afraid to say there is nothing more I can do for you. By changing the way he saw his role he came to the understanding that medications and operations may not be the best course of treatment but that he could continue in other ways to help his patients. He learned that it is important to talk to with his patients, ask questions, and most of all to listen. The patient first but also the family needs to be heard.
Gawande learned to ask these four questions of those in his care:
What is your understanding of the situation and its potential outcomes?
What are your fears and what are your hopes?
What trade-offs are you willing to make and not willing to make?
What is the course of action that best serves this understanding?
Ask yourself these. Can you answer them honestly? Do you think they might change as your situation does?
I can only hope if I were ill that someone would ask me the first two questions. The third and fourth are harder to answer. One patient of Gawande’s answered that if he could eat chocolate ice cream and watch football he would be happy. These were his trade-offs that sound simple and yet even these two small things might be more complicated than one would think.
Being Mortal it is not an easy book to read but there is hope and even laughter in its pages. There is also optimism in our approach to assisted living choices, hospice care and our living with our elderly.
Besides giving me some food for thought regarding my own priorities Being Mortal will open new discussion with my husband regarding his, and ease the road to discussion of our plan with our children. Surprisingly reading Being Mortal provided a better understanding and an easing of the guilt associated with seeing my parents through their ending days. This knowledge hopefully will lead to discussion with my family of what matters to me and should make their lives easier.
As I age one paramount consideration is where the next home may be and just what I am seeking in this experience. This could change quickly and I need to keep up with what’s available. I was very interested in the pioneering independent or assisted living models Dr. Gawande mentions. If you’ve ever been part of choosing one of these you will know how important this decision is and how often choices are limited. Reading about what Bill Thomas was able to achieve in a nursing home (THe Eden Alternative) in New Berlin, NY in 1991 was so uplifting. There is a whole chapter dedicated to this. Picture plants, children, dogs, cats, and 100 parakeets all living in harmony with the residents here. Might not work everywhere but what a concept. I want a place where I can live, not vegetate.
One major point I took from this was that we often visit these facilities thinking we are choosing for our loved ones without really considering their needs. We look at the convenience for us. I don’t think we mean to do this but it has given me a heads-up awareness.
There are many excellent reviews of Being Mortal on GoodReads and of course, elsewhere. The reading of these has prompted further contemplation and has pointed out things I might have missed. For this I thank the readers who share so much here.
Being Mortal: Medicine and What Matters in the End
The final words in this title What Matters in the End could as easily be a statement as a question and sets the theme for this exploration of living and dying. Mortal we are and yet its hard to embrace this concept especially when we are closer to our end than at its beginning. It may be true that we do not know when we’re going to die but frankly some of us know it will be sooner than later. We plan for so many things in our lives yet leave this most needed planning, that of the way we wish to die, what matters in the end, left unspoken, left undone.
Atul Gawande is to be commended for sharing stories of his patients and family as they seek the answers to the questions of life’s final moments. As a doctor he felt he was treating the illness but not the person, often afraid to say there is nothing more I can do for you. By changing the way he saw his role he came to the understanding that medications and operations may not be the best course of treatment but that he could continue in other ways to help his patients. He learned that it is important to talk to with his patients, ask questions, and most of all to listen. The patient first but also the family needs to be heard.
Gawande learned to ask these four questions of those in his care:
What is your understanding of the situation and its potential outcomes?
What are your fears and what are your hopes?
What trade-offs are you willing to make and not willing to make?
What is the course of action that best serves this understanding?
Ask yourself these. Can you answer them honestly? Do you think they might change as your situation does?
I can only hope if I were ill that someone would ask me the first two questions. The third and fourth are harder to answer. One patient of Gawande’s answered that if he could eat chocolate ice cream and watch football he would be happy. These were his trade-offs that sound simple and yet even these two small things might be more complicated than one would think.
Being Mortal it is not an easy book to read but there is hope and even laughter in its pages. There is also optimism in our approach to assisted living choices, hospice care and our living with our elderly.
Besides giving me some food for thought regarding my own priorities Being Mortal will open new discussion with my husband regarding his, and ease the road to discussion of our plan with our children. Surprisingly reading Being Mortal provided a better understanding and an easing of the guilt associated with seeing my parents through their ending days. This knowledge hopefully will lead to discussion with my family of what matters to me and should make their lives easier.
As I age one paramount consideration is where the next home may be and just what I am seeking in this experience. This could change quickly and I need to keep up with what’s available. I was very interested in the pioneering independent or assisted living models Dr. Gawande mentions. If you’ve ever been part of choosing one of these you will know how important this decision is and how often choices are limited. Reading about what Bill Thomas was able to achieve in a nursing home (THe Eden Alternative) in New Berlin, NY in 1991 was so uplifting. There is a whole chapter dedicated to this. Picture plants, children, dogs, cats, and 100 parakeets all living in harmony with the residents here. Might not work everywhere but what a concept. I want a place where I can live, not vegetate.
One major point I took from this was that we often visit these facilities thinking we are choosing for our loved ones without really considering their needs. We look at the convenience for us. I don’t think we mean to do this but it has given me a heads-up awareness.
There are many excellent reviews of Being Mortal on GoodReads and of course, elsewhere. The reading of these has prompted further contemplation and has pointed out things I might have missed. For this I thank the readers who share so much here.
April 24, 2021
***NO SPOILERS***
Being Mortal is about something no one can escape: death. That makes it an essential read for everyone. A sizable portioned also is focused on cancer, which is the second leading cause of death in the U.S. That also makes this book an essential read. Even for those who aren’t affected by the infirmities of old age or by cancer, at some point they’ll likely know at least one person who is. Whatever the case, everyone should be properly prepared to possibly make some tough end-of-life decisions. Gawande argues that medical technology has serious limitations in its ability to improve quality of life, in many instances worsening it instead. He builds the book around these uncomfortable facts of life.
Something that makes Being Mortal outstanding is how feeling it is. In rich and loving detail, Gawande shares the stories of various elderly people (in the first half) and those dying from cancer (second half). It’s a very gradual unspooling, as he starts with interesting background information right through to their older years. His notebooks must have been overflowing with notes. These portrayals are intensely emotional and what make Being Mortal a page-turner. Here are real people whose major health dilemmas I felt keenly. It’s the furthest thing from abstract and dry, and when some of these people die, I felt the impact. I’m glad for it. Prior to reading Being Mortal, I lacked an emotional link to these issues, especially to cancer. Being Mortal changed that for me significantly.
These true stories are Gawande’s jumping-off point to argue for a sea change in elder care and also end-of-life care for the terminally ill. Somehow, Gawande makes the topic of assisted living and nursing homes fascinating. Being Mortal isn’t just Gawande’s (professional) opinion, though. He devotes ample space to influential people in the fields of geriatrics, oncology, and hospice, in addition to citing relevant statistics and the latest research to support his perceptive and compelling arguments. He convinced me. Being Mortal is also well written and strategically organized.
I had no hesitation sliding this onto my “important nonfiction” shelf after finishing and also don’t hesitate to recommend Being Mortal to all. This is another unexpected treasure of a nonfiction book that reads just like the most gripping fiction I’ve read. The grim subject didn’t matter to me; I picked up Being Mortal with such joy each time I had some free minutes to read. This isn’t a bland “nonfiction book about medicine.” It’s a book about everyday people and the ultimate humbling experience: a reckoning with their physical failings. I feel confident that anyone who appreciates a moving story with the most memorable characters will love Being Mortal.
I’ll only say that I think timing in reading this is important, given the weighty topic. Although those caring for someone with cancer or in need of elder care will find Being Mortal extremely helpful, the book may compound any distress. On the flip side, for those not in this situation, I urge them to read Being Mortal as soon as possible.
Being Mortal is about something no one can escape: death. That makes it an essential read for everyone. A sizable portioned also is focused on cancer, which is the second leading cause of death in the U.S. That also makes this book an essential read. Even for those who aren’t affected by the infirmities of old age or by cancer, at some point they’ll likely know at least one person who is. Whatever the case, everyone should be properly prepared to possibly make some tough end-of-life decisions. Gawande argues that medical technology has serious limitations in its ability to improve quality of life, in many instances worsening it instead. He builds the book around these uncomfortable facts of life.
Something that makes Being Mortal outstanding is how feeling it is. In rich and loving detail, Gawande shares the stories of various elderly people (in the first half) and those dying from cancer (second half). It’s a very gradual unspooling, as he starts with interesting background information right through to their older years. His notebooks must have been overflowing with notes. These portrayals are intensely emotional and what make Being Mortal a page-turner. Here are real people whose major health dilemmas I felt keenly. It’s the furthest thing from abstract and dry, and when some of these people die, I felt the impact. I’m glad for it. Prior to reading Being Mortal, I lacked an emotional link to these issues, especially to cancer. Being Mortal changed that for me significantly.
These true stories are Gawande’s jumping-off point to argue for a sea change in elder care and also end-of-life care for the terminally ill. Somehow, Gawande makes the topic of assisted living and nursing homes fascinating. Being Mortal isn’t just Gawande’s (professional) opinion, though. He devotes ample space to influential people in the fields of geriatrics, oncology, and hospice, in addition to citing relevant statistics and the latest research to support his perceptive and compelling arguments. He convinced me. Being Mortal is also well written and strategically organized.
I had no hesitation sliding this onto my “important nonfiction” shelf after finishing and also don’t hesitate to recommend Being Mortal to all. This is another unexpected treasure of a nonfiction book that reads just like the most gripping fiction I’ve read. The grim subject didn’t matter to me; I picked up Being Mortal with such joy each time I had some free minutes to read. This isn’t a bland “nonfiction book about medicine.” It’s a book about everyday people and the ultimate humbling experience: a reckoning with their physical failings. I feel confident that anyone who appreciates a moving story with the most memorable characters will love Being Mortal.
I’ll only say that I think timing in reading this is important, given the weighty topic. Although those caring for someone with cancer or in need of elder care will find Being Mortal extremely helpful, the book may compound any distress. On the flip side, for those not in this situation, I urge them to read Being Mortal as soon as possible.
March 27, 2024
Catching up…
It was December 2016 when our Library Book Discussion group decided to read and discuss this book. It seemed appropriate at the time. A lot of us were dealing with either aging parents, or our own feelings about death and dying. His focus was on assisted living. I was caregiving my mother, and my husband was caregiving his father in the same assisted living environment. So, this discussion and book was very personal for me, at the time.
My Mom and father-in-law have since passed on. (Interestingly, within two weeks of each other.) But I remember how helpful this book was for me, and the group of men and women who surrounded me in discussion that day.
We shared how to distill what mattered most to each of us in life so that we could navigate our way toward the edge in a meaningful and satisfying way.
I won’t go into the various stories that he shares about the different people through his pages, I think that is best read by readers, but he did bring up a variety of heartfelt statements that were meaningful discussion moments for us as a group. As an example…
“It is not death that the very old tell me they fear. It is what happens short of death.”
In our discussion, we wondered how our family would feel about telling them, “I’m ready to go” or even if we would know how we would feel when we were ready to go. It was that fine line about striking a balance between fear of death and just being ready to let go.
I remember that this wasn’t an easy discussion to have with my mother. Especially as her mind began slipping from the Dementia with Lewy Bodies/Parkinson’s Disease.
One day, my mother shared with me that she was afraid of her own pending death. I tried to calm her. I remember her asking me what stage she was in of Parkinson’s disease. And I tried to explain it to her as sensitively as I could. I found out that after I left, her caregiver called me and said she was in tears, because she thought she was going to die soon. I drove back to her immediately, to calm her again and reassure her that wasn’t the case. I realized then, that this was only the beginning that things were going downhill for her – mind.
So much of our discussion about this book, talked about the various fears and challenges associated about end-of-life. The book asked us to consider…
How can we appreciate, honor, value a life, our well-being to live and die in dignity?
I certainly appreciated the experience of this book in working with my mother through her end-of-life.
The author may not have all the answers in this book, but he definitely opened the conversation.
It was December 2016 when our Library Book Discussion group decided to read and discuss this book. It seemed appropriate at the time. A lot of us were dealing with either aging parents, or our own feelings about death and dying. His focus was on assisted living. I was caregiving my mother, and my husband was caregiving his father in the same assisted living environment. So, this discussion and book was very personal for me, at the time.
My Mom and father-in-law have since passed on. (Interestingly, within two weeks of each other.) But I remember how helpful this book was for me, and the group of men and women who surrounded me in discussion that day.
We shared how to distill what mattered most to each of us in life so that we could navigate our way toward the edge in a meaningful and satisfying way.
I won’t go into the various stories that he shares about the different people through his pages, I think that is best read by readers, but he did bring up a variety of heartfelt statements that were meaningful discussion moments for us as a group. As an example…
“It is not death that the very old tell me they fear. It is what happens short of death.”
In our discussion, we wondered how our family would feel about telling them, “I’m ready to go” or even if we would know how we would feel when we were ready to go. It was that fine line about striking a balance between fear of death and just being ready to let go.
I remember that this wasn’t an easy discussion to have with my mother. Especially as her mind began slipping from the Dementia with Lewy Bodies/Parkinson’s Disease.
One day, my mother shared with me that she was afraid of her own pending death. I tried to calm her. I remember her asking me what stage she was in of Parkinson’s disease. And I tried to explain it to her as sensitively as I could. I found out that after I left, her caregiver called me and said she was in tears, because she thought she was going to die soon. I drove back to her immediately, to calm her again and reassure her that wasn’t the case. I realized then, that this was only the beginning that things were going downhill for her – mind.
So much of our discussion about this book, talked about the various fears and challenges associated about end-of-life. The book asked us to consider…
How can we appreciate, honor, value a life, our well-being to live and die in dignity?
I certainly appreciated the experience of this book in working with my mother through her end-of-life.
The author may not have all the answers in this book, but he definitely opened the conversation.
December 13, 2023
Many people avoid the subject of what should be done when the elders in their family become too frail or sick or demented to live by themselves or if a family member, whether old or young, is told they have a fatal disease such as cancer. When such news happens, and it will happen, the fraught, sometimes guilty, sometimes extremely distressed, yelling and arguing which follows the diagnosis can produce wrong incompetent rushed decisions that can lead to lifelong regrets and self-recriminations which will hurt everyone involved forever.
Before those emotional conversations occur, I strongly recommend reading 'Being Mortal'. It may literally save you decades of horrific guilt-ridden recollections about how things worked out for a loved one who died. I think I need to emphasize the book does NOT use an approach of standardized lists or a how-to or for-dummies short descriptive set of procedures which should be followed. Instead, Dr. Atul Gawande writes beautifully and sensitively, without sentimentality, of his own observations about his patients and of his personal experience when his father died.
This is a grownup man writing about real situations. The case histories he has included may cover every question the reader may have, but while he demonstrates what people should be prepared for, he makes it clear every person has to decide how to proceed for themselves. His primary conclusion is that the person who is dying not only ought to be allowed to provide the family with guidance, even if indirectly, the family should try to accommodate as much as possible what those wishes are, even if the dying one cannot speak rationally, even if such accommodations shorten one’s life. This is, in my opinion, the right procedure to take. There is no question that a certain amount of personal toughness and a giving up of irrational hopes is required by everyone involved. The one who is dying needs to be cleaned and fed despite whatever wishes they may have, but if the family insists on a surgical procedure (for example, cutting out a cancer, or a third round of chemo and radiation) which provides no benefit of lengthening life expectancy, this is plainly insane and it cries out for some sort of counseling. Unfortunately, patients often cannot depend on their doctors to speak plainly, since as Dr. Gawande makes clear, doctors do not get much training, if any, on telling patients they have a disease which is killing them or that they have aged out of possible medical solutions.
One part of the issue is often the person involved will not discuss what should happen if they are dying or they ask for what is impossible to accommodate. These will not be easy conversations. However, there comes a point when talking it through cannot be avoided. This book definitely helps in what can be a confusing and distressing time. It offers many ways to open the discussion and what sort of things should be discussed. That in itself makes the book an essential read.
However, Death is not as terrible as living ‘independently’ for your last five years. Independence is hellish for many of my neighbors, but there is nothing on earth which will convince them they should have elderly care. I see many visits by adult children who vainly try to convince their parents they need assistance. What I see most often is service calls to cable companies, plumbers, electricians, neighbors, police and family members for help with household electronics and fixtures which inexplicably cannot be made to perform by the older person.
I live in a park of trailer homes which are primarily sold to those who are of age 65+. When we moved here, I actually was too young - I did not meet the age set as minimum (my husband met the qualifications). The cul-de-sac we moved into had mostly empty houses. We didn't know it at the time, but there had been kind of a 'die-off'. It seems most of the former owners were in their 60's when they had bought these trailers - like us - and all had aged to their 80's together. At that point, they all began to 'fail'. Now, I am seeing it happen again before my eyes, since I am one of the youngest owners and most of the people who bought in when we did are now turning 80.
The number one issue I have been seeing is the complete denial that aging problems are multiplying beyond one's personal capabilities. It is not so much they do not have access to care, it is more that they refuse care. In my state, there are almost no remedies to legally force an elderly person to accept care if they are able to prove under a quick brief test (conversation, mostly) they can answer questions logically. This problem of a lack of acceptance of personal frailty is covered by Dr. Gawande in “Being Mortal’ too. Based on the people in my senior park, I’d say it is the predominant problem that younger family members will face when trying to discuss their elder’s growing difficulties in living alone. This issue alone should put this book on everyone’s ‘must read’ stack.
I walk every day so I have met everybody in my neighborhood. I take fewer than four medications a day (a criteria for impairment) so, based on that, I’d have to conclude that I am among the healthiest here.
Most of these folks have trouble walking now for differing reasons (most of them were walking when I moved here ten years ago) and all of them take many many medications. I have watched them deteriorate from walking strong initially, standing straight on firm legs, to now being bent over and walking with unsteady steps, tottering in a very scary manner, obviously needing walkers.
The interiors of houses inevitably become dirtier and dirtier from a lack of cleaning and a growing number of various types of spills and falls and accidents. Seniors lose their abilities to taste, smell, hear, walk, and see. Many cannot hear the birds chirp, or the wind in the trees. I have caught some of my elderly neighbors eating spoiled food. Some have required me to pull them out of chairs from which only a year ago they were able to push themselves up. Bathing is impossible now for most without aids, especially shower chairs. The regular toilet seats are being replaced by puffy, inches-thick seats from which my feet almost dangle above the floor (I now try to avoid using their bathrooms). Others have become incapable of typing or operating a computer mouse because of deteriorating spacial processing and/or weakening, shaking hands. I saw that a neighbor no longer possessed strength to hold a book in her hands.
Many are clearly developing various degrees of dementia. They all are finding the ability to follow instructions harder, so the continuous updates of technology, especially cell phones and cable TV, are requiring a growing reliance on service calls. A few of my neighbors are requesting my husband to visit three or more times a week to fix whatever they have messed up on their remotes, having punched so many wrong buttons the programming on their remotes no longer works. There were only four people besides myself who were able to use computers ten years ago; of those, one is now completely unable to make sense of the monitor screen or Windows operating system any longer.
At least once a month a firetruck and ambulance pulls up somewhere in my park. I have seen several of my nearby neighbors have a firetruck and ambulance pull up to their houses near me, needing medics to put them back on their feet after falls that neither they or their spouses could get up from. I saw one of my neighbors having CPR performed on him. I saw one of my neighbors set herself on fire trying to cook on her stove, shakily picking up a pot while dipping her sleeve into another hot burner. I saw two people burn their hands taking objects from an oven, on two separate occasions, because they each forgot that stuff baked in an oven is hot. Four of my neighbors have died or been moved to Hospice.
At first, I was as startled by all of this as a deer in headlights. It didn’t seem possible this stuff was happening all around me to people I knew.
Old people often fight off all advice and families by tooth and nail, yet the price of leaving them in their own homes could be a shortened life or a serious injury. People dying of a deadly disease may insist on operation after operation, experimental procedure after procedure trying to find a cure. On whose authority should adult care be decided - the elderly or dying adults? The families? The state? Who makes the call enough is enough?
Frankly, I'm now beyond being amazed at how much 'autonomy and independence' society continues to allow the elderly infirm and demented if they refuse to recognize their infirmities. My state is now going to what they call 'Silver Alerts' when old people have disappeared for a few days from their house and someone has noticed. That seems to be the extent of care that my state can provide if someone past 65 refuses help.
What is frightening me is that no one can ‘make’ people stop trying to live as if they were physically as adept as they were ten years ago if they clearly can no longer live unaided, but they are refusing to accept their deficiencies or weaknesses are causing life-threatening incidents. There have been several emergency calls to police caused by various serious, bone-breaking falls, faints and cuts, as I mentioned earlier, but I have learned there is no mechanism in place to force compliance with medical care if the adult has no wish for professional care. Families only have the power of speech and intimidation, unless they resort to legal mechanisms which can take months, when they can be used at all.
I used to think, well, these elderly folks are adults and have rights to live as they please, and Dr. Gawande also argues this viewpoint to some degree. But after having seen the urine and poop everywhere in bathrooms bedrooms and living rooms, not cleaned until a younger person happens to visit whenever, or seeing mostly blind (cataracts, retina issues) adults eat rotten food they can't taste or smell, or seeing adults catch themselves on fire or burn their hands on stoves and ovens because they forgot that things are hot, or my closest friend here, who died this year, walking about on sharp stones barefoot in a bathrobe, when she had always dressed up, or people who repeat the same story in EVERY conversation and visit from neighbors, or my neighbor who fell in the bathroom and lay there for 4 hours calling for her husband, who couldn't hear her because he is almost completely deaf, so when he finally missed her, it took him another 20 minutes to walk 15 feet to the bathroom because he has dizzy issues and must use a walker that he is too weak to use well, after struggling out of his chair, and after finding her calling 911 because it needed three young men to lift her despite her small frame....etc etc etc., I don’t know anymore what the answers are. Yet, many elder-care institutions are nothing but prison cells, and the costs to insurance companies, families, personal savings and taxpayers are ruinous.
I have learned, for example, that a drug-addicted alcoholic 68-year-old woman, bent over now, needing a walker, who broke her hip last year, could hold off the police, fire dept. medics, social service workers and her family for two weeks while she lay in her own filth immobile on her couch! She could answer questions coherently. It wasn't until in a moment of uncertainty she agreed to go to the hospital she finally was taken to have her hip operated on. However, she screamed about having changed her mind all the way to the ambulance! She created so much attitude while in the hospital and so much resistance, that when she checked herself out, called a cab, and moved back into her trailer, people did not try very hard to talk her out of it. We neighbors cleaned her house, but we have no power whatsoever to help her, primarily because she quickly accuses everyone of stealing and abuse. She picks up temporary home helpers by picking them up from grocery store parking lots, and they scare the rest of us. She had a lawsuit against a grocery store because she fell, but she created such misery for her lawyer from dementia-induced conversations, he dropped her case. She takes a cab to a casino regularly, and falls asleep at the slot machines. The employees don't touch her or wake her. She has stayed the night with her head propped up on a machine. (Sometimes she calls my husband to drive her home, which is how we know.) She has two dogs. They poop all over the inside of her house. Occasionally, someone will scoop it up, when they visit, when she asks someone to do it.
This is the worst case so far where I live, but not the only terrible one I see occurring to lesser degrees all around me.
Dr. Gawande makes a good case that the reason elderly people resist being placed in nursing homes is that many institutions for the aged and infirm are too regimented and rule-bound, and rely heavily on stupefying drugs, more for the benefit of warehousing adults than actually caring for elderly people. He argues for providing care which takes the adult individual’s previous life into consideration, making allowances for their desires as much as what is necessary to keeping them alive. Being kept alive is a horror if all pleasure from being alive is erased.
Elderly people, including those with dementia, should be allowed those things which make life worth living - pleasant surroundings, reasonable privacy, pets, personal furniture, plants, etc. If they wish to sleep all day and watch TV all night, it should be permitted. A regimented activity-filled day without any input from the resident is one of the causes behind a lot of the elderly fighting off any efforts to get them out of their increasingly dangerous personal homes.
I'm 100% behind assisted suicide, by the way. It should be obvious to you, gentle reader, that Aging does not mean a quick romantic death, like that often imagined of a healthy adult dropping dead or dying in their sleep after a vigorous happy day, but instead is a protracted, often painful, ugly, ignominious and slow-wasting process. The best health care can't give an aging person back their abilities to walk, hold a book, or clean their own bodies. The person often is aware of their smelly decrepitude, mental losses and physical incapacity, and is ashamed. Here in my state, there has to be two doctors to sign off on giving drugs to die and there must be an estimation of six months to live.
After seeing how old age robs the person of good health, I am alternatively terrified and depressed. I have been seeing typical clues among my neighbors of oncoming death - such as not understanding what is on the TV, but staring at it 24/7, falling on the floor but being content to not call for help despite hours passing, eating spoiled food because the person no longer can judge on any level the condition of their groceries, continual body-waste accidents in one's chair several times a week without asking for help, missing meds even while they insist they took them, trying to walk around inappropriately dressed or attempting to drive, but instead ending up sitting in the car trying to move levers or get the key in the slot, etc. Reading is a lost art to these folks!
I suspect almost no elderly person who had a house will ever completely agree that they needed to be in an assisted living or nursing home. I suspect an older family member who has been installed in an institution will never fully accept that they no longer are competent. I think those of you who are anticipating such a struggle with their own elderly family members (or someone young who has been told they have a life-threatening disease) should definitely read this book. ‘Being Mortal’ will help readers be firmer and more knowing what to expect in that conversation, and be more knowledgeable in what to look for while shopping for a place of elderly care, or for medical care for someone who actually cannot be helped by another operation or new drug despite what the doctor offers.
We treat pet animals better, I think, generally. In America, our ethics are a bit all over the map on this, mine too. This book not only sheds some light on the problems, it also offers some methodology to help cut through the misery and confusion. Ultimately, resources and family input, along with the involved adult must be consulted and information synthesized. No one will be entirely happy with the result, in my opinion. But until the Fountain of Youth is discovered, we are all going to have to accept compromises and the despair of no happy endings, sometimes, of the person we are trying to help.
Something which helps me is reciting, “where you have no power, there is no responsibility.” I think it is VERY helpful in deciding what you can actually do about terrible situations.
Before those emotional conversations occur, I strongly recommend reading 'Being Mortal'. It may literally save you decades of horrific guilt-ridden recollections about how things worked out for a loved one who died. I think I need to emphasize the book does NOT use an approach of standardized lists or a how-to or for-dummies short descriptive set of procedures which should be followed. Instead, Dr. Atul Gawande writes beautifully and sensitively, without sentimentality, of his own observations about his patients and of his personal experience when his father died.
This is a grownup man writing about real situations. The case histories he has included may cover every question the reader may have, but while he demonstrates what people should be prepared for, he makes it clear every person has to decide how to proceed for themselves. His primary conclusion is that the person who is dying not only ought to be allowed to provide the family with guidance, even if indirectly, the family should try to accommodate as much as possible what those wishes are, even if the dying one cannot speak rationally, even if such accommodations shorten one’s life. This is, in my opinion, the right procedure to take. There is no question that a certain amount of personal toughness and a giving up of irrational hopes is required by everyone involved. The one who is dying needs to be cleaned and fed despite whatever wishes they may have, but if the family insists on a surgical procedure (for example, cutting out a cancer, or a third round of chemo and radiation) which provides no benefit of lengthening life expectancy, this is plainly insane and it cries out for some sort of counseling. Unfortunately, patients often cannot depend on their doctors to speak plainly, since as Dr. Gawande makes clear, doctors do not get much training, if any, on telling patients they have a disease which is killing them or that they have aged out of possible medical solutions.
One part of the issue is often the person involved will not discuss what should happen if they are dying or they ask for what is impossible to accommodate. These will not be easy conversations. However, there comes a point when talking it through cannot be avoided. This book definitely helps in what can be a confusing and distressing time. It offers many ways to open the discussion and what sort of things should be discussed. That in itself makes the book an essential read.
However, Death is not as terrible as living ‘independently’ for your last five years. Independence is hellish for many of my neighbors, but there is nothing on earth which will convince them they should have elderly care. I see many visits by adult children who vainly try to convince their parents they need assistance. What I see most often is service calls to cable companies, plumbers, electricians, neighbors, police and family members for help with household electronics and fixtures which inexplicably cannot be made to perform by the older person.
I live in a park of trailer homes which are primarily sold to those who are of age 65+. When we moved here, I actually was too young - I did not meet the age set as minimum (my husband met the qualifications). The cul-de-sac we moved into had mostly empty houses. We didn't know it at the time, but there had been kind of a 'die-off'. It seems most of the former owners were in their 60's when they had bought these trailers - like us - and all had aged to their 80's together. At that point, they all began to 'fail'. Now, I am seeing it happen again before my eyes, since I am one of the youngest owners and most of the people who bought in when we did are now turning 80.
The number one issue I have been seeing is the complete denial that aging problems are multiplying beyond one's personal capabilities. It is not so much they do not have access to care, it is more that they refuse care. In my state, there are almost no remedies to legally force an elderly person to accept care if they are able to prove under a quick brief test (conversation, mostly) they can answer questions logically. This problem of a lack of acceptance of personal frailty is covered by Dr. Gawande in “Being Mortal’ too. Based on the people in my senior park, I’d say it is the predominant problem that younger family members will face when trying to discuss their elder’s growing difficulties in living alone. This issue alone should put this book on everyone’s ‘must read’ stack.
I walk every day so I have met everybody in my neighborhood. I take fewer than four medications a day (a criteria for impairment) so, based on that, I’d have to conclude that I am among the healthiest here.
Most of these folks have trouble walking now for differing reasons (most of them were walking when I moved here ten years ago) and all of them take many many medications. I have watched them deteriorate from walking strong initially, standing straight on firm legs, to now being bent over and walking with unsteady steps, tottering in a very scary manner, obviously needing walkers.
The interiors of houses inevitably become dirtier and dirtier from a lack of cleaning and a growing number of various types of spills and falls and accidents. Seniors lose their abilities to taste, smell, hear, walk, and see. Many cannot hear the birds chirp, or the wind in the trees. I have caught some of my elderly neighbors eating spoiled food. Some have required me to pull them out of chairs from which only a year ago they were able to push themselves up. Bathing is impossible now for most without aids, especially shower chairs. The regular toilet seats are being replaced by puffy, inches-thick seats from which my feet almost dangle above the floor (I now try to avoid using their bathrooms). Others have become incapable of typing or operating a computer mouse because of deteriorating spacial processing and/or weakening, shaking hands. I saw that a neighbor no longer possessed strength to hold a book in her hands.
Many are clearly developing various degrees of dementia. They all are finding the ability to follow instructions harder, so the continuous updates of technology, especially cell phones and cable TV, are requiring a growing reliance on service calls. A few of my neighbors are requesting my husband to visit three or more times a week to fix whatever they have messed up on their remotes, having punched so many wrong buttons the programming on their remotes no longer works. There were only four people besides myself who were able to use computers ten years ago; of those, one is now completely unable to make sense of the monitor screen or Windows operating system any longer.
At least once a month a firetruck and ambulance pulls up somewhere in my park. I have seen several of my nearby neighbors have a firetruck and ambulance pull up to their houses near me, needing medics to put them back on their feet after falls that neither they or their spouses could get up from. I saw one of my neighbors having CPR performed on him. I saw one of my neighbors set herself on fire trying to cook on her stove, shakily picking up a pot while dipping her sleeve into another hot burner. I saw two people burn their hands taking objects from an oven, on two separate occasions, because they each forgot that stuff baked in an oven is hot. Four of my neighbors have died or been moved to Hospice.
At first, I was as startled by all of this as a deer in headlights. It didn’t seem possible this stuff was happening all around me to people I knew.
Old people often fight off all advice and families by tooth and nail, yet the price of leaving them in their own homes could be a shortened life or a serious injury. People dying of a deadly disease may insist on operation after operation, experimental procedure after procedure trying to find a cure. On whose authority should adult care be decided - the elderly or dying adults? The families? The state? Who makes the call enough is enough?
Frankly, I'm now beyond being amazed at how much 'autonomy and independence' society continues to allow the elderly infirm and demented if they refuse to recognize their infirmities. My state is now going to what they call 'Silver Alerts' when old people have disappeared for a few days from their house and someone has noticed. That seems to be the extent of care that my state can provide if someone past 65 refuses help.
What is frightening me is that no one can ‘make’ people stop trying to live as if they were physically as adept as they were ten years ago if they clearly can no longer live unaided, but they are refusing to accept their deficiencies or weaknesses are causing life-threatening incidents. There have been several emergency calls to police caused by various serious, bone-breaking falls, faints and cuts, as I mentioned earlier, but I have learned there is no mechanism in place to force compliance with medical care if the adult has no wish for professional care. Families only have the power of speech and intimidation, unless they resort to legal mechanisms which can take months, when they can be used at all.
I used to think, well, these elderly folks are adults and have rights to live as they please, and Dr. Gawande also argues this viewpoint to some degree. But after having seen the urine and poop everywhere in bathrooms bedrooms and living rooms, not cleaned until a younger person happens to visit whenever, or seeing mostly blind (cataracts, retina issues) adults eat rotten food they can't taste or smell, or seeing adults catch themselves on fire or burn their hands on stoves and ovens because they forgot that things are hot, or my closest friend here, who died this year, walking about on sharp stones barefoot in a bathrobe, when she had always dressed up, or people who repeat the same story in EVERY conversation and visit from neighbors, or my neighbor who fell in the bathroom and lay there for 4 hours calling for her husband, who couldn't hear her because he is almost completely deaf, so when he finally missed her, it took him another 20 minutes to walk 15 feet to the bathroom because he has dizzy issues and must use a walker that he is too weak to use well, after struggling out of his chair, and after finding her calling 911 because it needed three young men to lift her despite her small frame....etc etc etc., I don’t know anymore what the answers are. Yet, many elder-care institutions are nothing but prison cells, and the costs to insurance companies, families, personal savings and taxpayers are ruinous.
I have learned, for example, that a drug-addicted alcoholic 68-year-old woman, bent over now, needing a walker, who broke her hip last year, could hold off the police, fire dept. medics, social service workers and her family for two weeks while she lay in her own filth immobile on her couch! She could answer questions coherently. It wasn't until in a moment of uncertainty she agreed to go to the hospital she finally was taken to have her hip operated on. However, she screamed about having changed her mind all the way to the ambulance! She created so much attitude while in the hospital and so much resistance, that when she checked herself out, called a cab, and moved back into her trailer, people did not try very hard to talk her out of it. We neighbors cleaned her house, but we have no power whatsoever to help her, primarily because she quickly accuses everyone of stealing and abuse. She picks up temporary home helpers by picking them up from grocery store parking lots, and they scare the rest of us. She had a lawsuit against a grocery store because she fell, but she created such misery for her lawyer from dementia-induced conversations, he dropped her case. She takes a cab to a casino regularly, and falls asleep at the slot machines. The employees don't touch her or wake her. She has stayed the night with her head propped up on a machine. (Sometimes she calls my husband to drive her home, which is how we know.) She has two dogs. They poop all over the inside of her house. Occasionally, someone will scoop it up, when they visit, when she asks someone to do it.
This is the worst case so far where I live, but not the only terrible one I see occurring to lesser degrees all around me.
Dr. Gawande makes a good case that the reason elderly people resist being placed in nursing homes is that many institutions for the aged and infirm are too regimented and rule-bound, and rely heavily on stupefying drugs, more for the benefit of warehousing adults than actually caring for elderly people. He argues for providing care which takes the adult individual’s previous life into consideration, making allowances for their desires as much as what is necessary to keeping them alive. Being kept alive is a horror if all pleasure from being alive is erased.
Elderly people, including those with dementia, should be allowed those things which make life worth living - pleasant surroundings, reasonable privacy, pets, personal furniture, plants, etc. If they wish to sleep all day and watch TV all night, it should be permitted. A regimented activity-filled day without any input from the resident is one of the causes behind a lot of the elderly fighting off any efforts to get them out of their increasingly dangerous personal homes.
I'm 100% behind assisted suicide, by the way. It should be obvious to you, gentle reader, that Aging does not mean a quick romantic death, like that often imagined of a healthy adult dropping dead or dying in their sleep after a vigorous happy day, but instead is a protracted, often painful, ugly, ignominious and slow-wasting process. The best health care can't give an aging person back their abilities to walk, hold a book, or clean their own bodies. The person often is aware of their smelly decrepitude, mental losses and physical incapacity, and is ashamed. Here in my state, there has to be two doctors to sign off on giving drugs to die and there must be an estimation of six months to live.
After seeing how old age robs the person of good health, I am alternatively terrified and depressed. I have been seeing typical clues among my neighbors of oncoming death - such as not understanding what is on the TV, but staring at it 24/7, falling on the floor but being content to not call for help despite hours passing, eating spoiled food because the person no longer can judge on any level the condition of their groceries, continual body-waste accidents in one's chair several times a week without asking for help, missing meds even while they insist they took them, trying to walk around inappropriately dressed or attempting to drive, but instead ending up sitting in the car trying to move levers or get the key in the slot, etc. Reading is a lost art to these folks!
I suspect almost no elderly person who had a house will ever completely agree that they needed to be in an assisted living or nursing home. I suspect an older family member who has been installed in an institution will never fully accept that they no longer are competent. I think those of you who are anticipating such a struggle with their own elderly family members (or someone young who has been told they have a life-threatening disease) should definitely read this book. ‘Being Mortal’ will help readers be firmer and more knowing what to expect in that conversation, and be more knowledgeable in what to look for while shopping for a place of elderly care, or for medical care for someone who actually cannot be helped by another operation or new drug despite what the doctor offers.
We treat pet animals better, I think, generally. In America, our ethics are a bit all over the map on this, mine too. This book not only sheds some light on the problems, it also offers some methodology to help cut through the misery and confusion. Ultimately, resources and family input, along with the involved adult must be consulted and information synthesized. No one will be entirely happy with the result, in my opinion. But until the Fountain of Youth is discovered, we are all going to have to accept compromises and the despair of no happy endings, sometimes, of the person we are trying to help.
Something which helps me is reciting, “where you have no power, there is no responsibility.” I think it is VERY helpful in deciding what you can actually do about terrible situations.
February 10, 2015
An essential guide to decision-making about end-of-life care, but also a more philosophical treatment of the question of what makes life worth living. When should we extend life, and when should we concentrate more on the quality of our remaining days than their quantity? Most of the book weighs the plight of the elderly (it’s not just grim nursing homes out there), but there are also plenty of illustrative cases about the terminally ill. The “Letting Go” chapter is among the best; it grew out of this New Yorker article, which proved extremely helpful for my sister when she was arranging hospice care for her late husband.
Along with The Emperor of All Maladies, this is a book everyone should read. Surgeon Atul Gawande, like Siddhartha Mukherjee, brings a physician’s technical knowledge to his writing, but also a very personal touch: his father, grandfather, and grandmother-in-law are among his subjects. This book is truly a gift. I plan to pass it to my mother; she’s only 67, but it’s never too early to start on that ‘hard conversation’ about one’s wishes for the end of life.
Favorite passage: “The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
Along with The Emperor of All Maladies, this is a book everyone should read. Surgeon Atul Gawande, like Siddhartha Mukherjee, brings a physician’s technical knowledge to his writing, but also a very personal touch: his father, grandfather, and grandmother-in-law are among his subjects. This book is truly a gift. I plan to pass it to my mother; she’s only 67, but it’s never too early to start on that ‘hard conversation’ about one’s wishes for the end of life.
Favorite passage: “The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
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