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PROCEEDINGS OF A WORKSHOP
This activity was supported by the Gordon and Betty Moore Foundation. Annual
support for the roundtable’s activities is provided by Aetna Inc., Altarum Institute,
American Academy of Hospice and Palliative Medicine, American Cancer Society,
American Geriatrics Society, Anthem, Inc., Ascension Health, Association of
Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross and Blue
Shield of North Carolina, Blue Cross Blue Shield Association, Blue Cross Blue Shield
of Massachusetts, The California State University Institute for Palliative Care,
Cambia Health Solutions, Cedars-Sinai Health System, Center to Advance Palliative
Care, Centers for Medicare & Medicaid Services, Coalition to Transform Advanced
Care, Common Practice, Excellus BlueCross BlueShield, Federation of American
Hospitals, The Greenwall Foundation, The John A. Hartford Foundation, Hospice
and Palliative Nurses Association, Kaiser Permanente, Susan G. Komen, Gordon
and Betty Moore Foundation, National Coalition for Hospice and Palliative Care,
National Hospice and Palliative Care Organization, National Institute of Nursing
Research, National Palliative Care Research Center, National Patient Advocate
Foundation, National Quality Forum, The New York Academy of Medicine,
Oncology Nursing Society, Patient-Centered Outcomes Research Institute, Sentara
Healthcare, Social Work Hospice and Palliative Care Network, Supportive Care
Coalition, UnitedHealth Group, and the National Academy of Medicine. Any
opinions, findings, conclusions, or recommendations expressed in this publication
do not necessarily reflect the views of any organization or agency that provided
support for the project.
Additional copies of this publication are available for sale from the National
Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800)
624-6242 or (202) 334-3313; http://www.nap.edu.
Project Staff
LAURENE GRAIG, Director, Roundtable on Quality Care for People
with Serious Illness
SYLARA MARIE CRUZ, Research Assistant
SHARYL NASS, Director, Board on Health Care Services, and
Director, National Cancer Policy Forum
ANDREW M. POPE, Director, Board on Health Sciences Policy
Consultant
JOE ALPER, Consulting Writer
__________________
1 The National Academies of Sciences, Engineering, and Medicine’s planning
committees are solely responsible for organizing the workshop, identifying topics,
and choosing speakers. The responsibility for the published Proceedings of a
Workshop rests with the workshop rapporteurs and the institution.
ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH
SERIOUS ILLNESS1
__________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and
roundtables do not issue, review, or approve individual documents. The
responsibility for the published Proceedings of a Workshop rests with the
workshop rapporteurs and the institution.
Reviewers
INTRODUCTION
Quality Measures for Accountability in Community-Based Serious
Illness Care
Organization of Workshop and Proceedings
THE PATIENT–FAMILY PERSPECTIVE
GAPS, CHALLENGES, AND OPPORTUNITIES IN IMPLEMENTING
QUALITY MEASURES FOR ACCOUNTABILITY
Measuring High-Quality Care
Challenges in Implementing Quality Measures for Serious Illness
Care
Discussion
INNOVATIVE APPROACHES TO IMPLEMENTING QUALITY MEASURES
FROM THE PERSPECTIVES OF HEALTH CARE PROVIDERS AND
PAYERS
Lessons from Blue Shield of California’s Palliative Care Program
Aspire Health’s Model of Home-Based Palliative Care
Anthem’s Perspective on Quality Measures
Discussion
MEASURE REVIEW AND ENDORSEMENT REDESIGN AT THE
NATIONAL QUALITY FORUM
INNOVATIVE APPROACHES AND POLICY LEVERS FOR
IMPLEMENTING QUALITY MEASURES FROM THE PERSPECTIVES OF
PUBLIC PROGRAMS
Meaningful Measures Initiative at CMS
CMS Quality Payment Program
Caring for Patients with Chronic Complex Illnesses at the U.S.
Department of Veterans Affairs
Medicare Advantage Programs
A Congressional Perspective
Discussion
FUTURE USE OF QUALITY MEASURES FOR ACCREDITATION TO
SUPPORT ACCOUNTABILITY FOR HIGH-QUALITY CARE
Accreditation and Certification at The Joint Commission
Measurement in the Context of Hospice and Home Health Care
Challenges of Quality Improvement
Discussion
SUPPORTING CLINICAL COMMUNITIES FOR QUALITY AND
ACCOUNTABILITY
A Health Care Information Technology Company’s Approach to
Support Accountability
Real-World Implementation of Quality Measures
Discussion
CHARTING A PATH FORWARD
REFERENCES
BOXES
1 Key Definitions
2 Suggestions Made by Individual Workshop Participants on
Implementing Quality Measures for Accountability in
Community-Based Care for People with Serious Illness
3 Measures Drive Improvement If . . .
FIGURES
1 A nested population model of serious illness
2 Simulation of various approaches to identify patients with
serious illness
3 The redesigned consensus development process for measure
endorsement at NQF features two cycles per year
4 NQF’s prioritization initiative process
5 NQF’s measure prioritization criteria
6 Focus areas for the CMS Meaningful Measures Initiative
7 2016 survey results of high-risk PIM and PACT patients
8 Percentage of Medicare beneficiaries hospitalized or deceased
in 2015 by 2014 high-need status
9 Percentage of high-need and non-high-need patients enrolled
in low-quality Medicare Advantage plans
10 Comparison PCQN pain report
Acronyms and Abbreviations
INTRODUCTION1
Millions of Americans of all ages face the challenge of living with
serious illnesses such as advanced cancer, heart, or lung disease. Many
people with serious illness are increasingly cared for in community
settings. While the number of community-based programs to provide
care for those with serious illness has grown significantly, the quality of
care provided is not consistent across geographic locations or care
settings (Teno et al., 2017). Care for the serious illness population often
features gaps in coordination across sites of care and poor patient and
family perceptions as to the quality of care provided (Kelley and
Bollens-Lund, 2018). In an effort to better understand and facilitate
discussions about the challenges and opportunities related to identifying
and implementing quality measures for accountability purposes in
community-based serious illness care, the Roundtable on Quality Care
for People with Serious Illness of the National Academies of Sciences,
Engineering, and Medicine held a public workshop on April 17, 2018, in
Washington, DC. The workshop featured a broad range of experts and
stakeholders including clinical care team members, researchers, policy
analysts, patient advocates, representatives of federal agencies, as well
as those involved in health care accreditation and the development of
quality measures. Workshop presentations explored the current state of
quality measurement for people with serious illness, their families, and
caregivers, with the aim of identifying next steps toward effectively
implementing measures to drive improvement in the quality of
community-based care for those facing serious illness (see Box 1 for
key definitions).
The roundtable serves to convene stakeholders from government,
academia, industry, professional associations, nonprofit advocacy
groups, and philanthropies. Inspired by and expanding on the work of
the 2014 Institute of Medicine (IOM) consensus study report Dying in
America: Improving Quality and Honoring Individual Preferences Near
the End of Life (IOM, 2015a),2 the roundtable aims to foster ongoing
dialogue about crucial policy and research issues to accelerate and
sustain progress in care for people of all ages experiencing serious
illness.
In his introductory remarks to the workshop, James Tulsky, chair of
the department of psychosocial oncology and palliative care at the
Dana-Farber Cancer Institute, thanked the Gordon and Betty Moore
Foundation for supporting the workshop and other ongoing efforts to
improve quality measurement.3 He pointed out that such work is
essential to providing the best care to people with serious illness,
reminding the workshop audience, “As we all know, if you do not
measure it, you cannot improve it.” Tulsky went on to note the difficulty
of measurement for the serious illness care population, but added that
is why “it is important that we talk about and think deeply” about this
topic.
Amy Melnick, executive director of the National Coalition for Hospice
and Palliative Care, and the workshop planning committee co-chair,
pointed out that the workshop aimed to further the discussion by
exploring the “real-world application of measurement that makes a
difference.” In stressing the implementation of measures for
accountability, Melnick noted that workshop speakers would address
issues such the importance of capturing information in a non-
burdensome way for clinicians and patients, as well as being cognizant
of the unintended consequences that may arise from measures
implementation. Melnick noted that ultimately the goal is to arrive at
“that right set of feasible, valid, actionable, and meaningful quality
measures.” She added that “the values and preferences of people with
serious illness, their families, and their caregivers, has to drive the
accountable measurement system we are seeking.” Amy Kelley,
associate professor at Icahn School of Medicine at Mount Sinai, and the
workshop planning committee co-chair, underscored the workshop’s
focus on implementation of existing measures rather than measures
development, though she acknowledged there is clearly more work to
be done in that area. Kelley also pointed out that the goal of the
workshop was to build on lessons learned and think about actionable
next steps “rather than simply admiring the problem.”
BOX 1
Key Definitions
New community-based palliative care models are meeting the
needs of those with a serious illness who are neither hospitalized
nor hospice eligible, through provision of care in patient homes,
physician offices/clinics, cancer centers, dialysis units, assisted and
long-term care facilities, and other community settings.
Community-based palliative care services are delivered by clinicians
in primary care and specialty care practices (such as oncologists),
as well as home-based medical practices, private companies, home
health agencies, hospices, and health systems (NCPQPC, 2018).
BOX 2
Suggestions Made by Individual Workshop
Participants on Implementing Quality
Measures for Accountability in Community-
Based Care for People with Serious Illness
Incorporating the Patient, Family, and Caregiver Voices
Reward and support the implementation of measures that focus
on those individuals with serious illness and ensure that such
measures reflect both the patient and caregiver voices. (Melnick)
Physicians need to take the time to learn about patients and
their caregivers, find out what their lives are like outside the
clinic, and engage in compassionate explaining. (Herrera,
McCann, Saliba)
Appreciate that trust is bidirectional: Doctors need to trust their
patients as much as their patients trust them. (Darien, Herrera)
Health care providers need to help patients with serious illness
and multiple issues to transition through the various aspects of
care. (Bergamini, Darien)
Address provider dismissiveness or lack of quality time with a
patient by implementing more measures focused on patient and
caregiver goals. (Herrera)
Create measures that are important to patients and caregivers
and drive real improvement in quality. (Baron, Burstin, Darien,
Duseja, Hanson)
Produce measures that support an integrated, systematic view of
care that reflects the experience of patients with serious illness
over the course of their illness. (Burstin, Krebbs)
Design measures that reflect how patients interact with the
dozens of medical specialties that can play a role in the care of
patients with serious illness. (Burstin)
Ensure that clinicians truly hear the concerns of patients and
caregivers so that the health care system is not “deaf” to the
people for which it cares. (Berman)
Move away from checkboxes and get to what matters for
patients and families. (Bergamini)
Engage patients when implementing measures and think about
measures that would make the patient’s experience better. If it
does not matter to patients, it should not matter. (Baron)
Involve patients and caregivers in identifying patient- and
caregiver-centric measure concepts during the development
process and throughout the testing and implementation phases.
(Agrawal)
Change the system of serious illness by considering and
understanding the individual’s experience. (Darien)
Untether the disease aspect from measurement and focus on the
goals of care from the perspective of the individual and the sum
of their conditions and social needs. (Berman)
Weight existing quality measures based on high-need patients,
rather than developing new measures to provide information
specific for high-need Medicare Advantage patients who need
higher-quality care. (Mor)
Consider ways to leverage the patient and caregiver voice;
engaged patients and caregivers are key levers to improve
quality. (Rokoske)
To ensure that patient and family experience measures are
adequate, make certain they are coupled with clinical quality
measures that identify poor-quality clinical care. (Henry)
Take into account patient self-reports of function, which are very
reliable and highly predictive of outcomes, for outcome
measures. (Saliba)
Recognize that measurement is dependent on timing and can
vary based on where the patient and the family are in their life
and prognosis. Take into account that measures that result in ill-
timed treatment and behaviors may be harmful to the patient.
(Teno)
Do not assume that patients and families want less care. Rather,
focus on ensuring patients and families can access care that they
want and need. (Teno)
Work to measure effectively the quality of the serious illness
conversations that team members have with patients. (Lanz)
Reach agreement on what is important to patients and families.
(Morrison)
Begin to develop measures to provide a picture of how entire
communities are doing. (Lynn)
For Herrera, the challenge of caring for her daughter, Angelica, began
with the search for a proper diagnosis. When Angelica was about 3
months old, Herrera noticed that she was not responding to sounds.
Her pediatrician dismissed Herrera’s concerns as the ill-informed worries
of a 19-year-old mother who was likely suffering from postpartum
depression. A second pediatrician also attributed Herrera’s concerns to
her young age, told her she was expecting too much from her daughter,
and referred her to a mental health specialist. A third pediatrician
blamed colic for her daughter’s difficulty sleeping and failure to engage.
Angelica was nearly 7 months old when the fourth pediatrician Herrera
saw referred her to Children’s National Health System for a hearing test,
which revealed that her daughter was deaf. That diagnosis led to
magnetic resonance imaging (MRI) to try to pinpoint the cause of her
daughter’s hearing impairment. The MRI revealed a brain anomaly and
a diagnosis of PTCD. At that point, Herrera’s daughter was nearly 3
years old. Herrera was presented with two options for dealing with her
daughter’s deafness: cochlear implants or nothing. Herrera chose the
implants, a decision she questions now knowing that learning sign
language would have been a third option.
Herrera shared that, in her current role helping younger parents and
non-English-speaking families navigate the health care system, she sees
parents struggling to communicate with clinicians and clinicians failing
to respect parents’ concerns. She finds this is particularly the case if the
parents are young, lack formal education, or have difficulty with
English. Herrera observes that parents become reluctant to bring their
children to the doctor for fear of learning that something else is wrong
with their child. This could be remedied, according to Herrera, if
clinicians take the time to learn about the patients and their caregivers,
find out what their lives are like outside of the clinic, and engage in
what she termed “compassionate explaining.”
Bergamini remarked that Herrera’s story reminded him of what the
person in charge of his residency once told him: his goal should be to
do what a young parent can do intuitively, which is to know something
is wrong with his or her child from 50 feet away. He added that
spending the time to get to know a patient has become increasingly
challenging given that clinicians within the predominantly fee-for-
service reimbursement system are typically paid based on the number
of patient encounters and procedures.
Darien observed that Herrera’s experience points to the need for trust
to be mutual, with doctors trusting their patients as much as their
patients trust them. She also noted that young adults often have the
same discounting experience as young parents, recalling when she was
diagnosed with non-Hodgkin’s lymphoma she was treated as if she was
a hypochondriac because she was young and complaining about chest
pain.
Darien spoke to the issue of survivorship and the failure of health
systems to help with the transition from having cancer to being in
remission. Treating, she said, is not the same as healing. “I have been
treated extremely well by extremely competent, gifted physicians, but I
have not been healed by those same physicians in the same way,”
stated Darien. She added that a vital lesson for patients, caregivers,
and providers is to understand that “healing has to be part of what we
do with our communities, not just treating the disease.” Bergamini
noted that this was a crucial point in terms of the care that individuals
with serious illness receive. In his view, clinicians are accustomed to
diagnosing and treating acute illness and getting through a specific
episode of illness, but are not well versed in helping seriously ill
patients with multiple issues transition from one “compartment” to
another.
Darien also said she does not believe time is always the answer, just
as money is not always the answer. She recounted how one of her
oncologists rarely spent more than 10 or 15 minutes with her, but
during that time, she truly listened to Darien. Bergamini pointed out
that listening and understanding is not intuitive for many providers.
Herrera noted that one advantage of her institution being a teaching
hospital is that medical students and first-year residents are eager to
learn about their patients’ conditions and concerns. Another benefit of
working at Children’s, she said, is that she and her five navigator
colleagues are consulted before a new program is implemented to
provide a parent’s perspective on whether parents will engage with the
program. “Starting the new initiative with the parent’s input really helps
them get it right from the beginning” and to think about it being a
patient-focused initiative, noted Herrera.
During the question-and-answer session following the presentations,
Amy Berman, senior program officer at The John A. Hartford
Foundation, asked Herrera and Darien if they could recommend a
measure that would address the challenges they faced. Herrera replied
that more measures around patient and caregiver goals would be
useful, including ways to provide realistic timelines to families that
would help them figure out how to balance caregiving with the rest of
life’s demands, including caring for other children in the family.
Darien pointed out that the issue is not deciding on individual
measures, but reframing the way measures reflect what is important to
the patient and caregiver rather than what is important to the health
care system. For Darien, many measures seem like what she called
“hospitality measures,” with a focus on how good the hospital food is,
rather than on whether the food is helping with the healing process, or
how the furniture looks, rather than how comfortable it is for patients
and their long-term guests. “Quality measures have to be meaningful to
patients and to patients’ outcomes and quality of life rather than
meaningful to payment models and to checking the box,” emphasized
Darien.
Lauren Cates, board chair and executive director of Healwell, as well
as immediate past president and founding director of the board of the
Society for Oncology Massage, said her organization talks with health
care professionals about how being honest about their own mortality
affects the care they provide and the importance of speaking honestly
to patients when delivering a diagnosis. Both Herrera and Darien
agreed that facing one’s mortality is very difficult and that it can be
confusing to many patients when providers use percentages of possible
survival while delivering a prognosis. Bergamini offered the question he
hates the most as an oncologist is when parents want to know the
chances of their child being cured. “One of the most difficult things to
learn is how to discuss prognosis,” said Bergamini. “People will
remember those words forever.” Bergamini closed the session, noting it
set “a great tone for the day as we try to get away from the
checkboxes and get to what matters to patients and families.”
BOX 3
Measures Drive Improvement If . . .
Important/relevant
Large population—public health impact
Impact on patients/caregivers (key stakeholders)
Scientifically acceptable
Evidence linking structure/process to outcome
Strong operational definition (reproducible, valid)
Feasible
Can be captured in clinical care
Acceptable burden/cost
Responsive
Measure improves with better care
2. Speculative Philosophy.
3. Practical Philosophy.
Ethics.
Economics.
Politics.
4. Poetic Philosophy.
Art.
Poetry.
Rhetoric.
Aristotle’s Metaphysics.
1. Development is Purposeful. The conception of relation is,
of course, quite as fundamental in Aristotle’s theory of metaphysics
as in his logic. In logic knowledge of the particular is possible
through its relationship to the universal; in metaphysics the
relationship is the relationship of development—the particular has
significance and value through the universal essence that unfolds
from within it. If Aristotle shows genius for abstract thinking by
becoming the “Father of Logic,” he shows equal genius for abstract
thinking in his metaphysical conception of development. He believed
that metaphysics applies the same conditions to things that logic
discovers in thought. But in metaphysics the relationship is not the
abstract relationship that Aristotle saw in Plato, but the vital relation
of development in the life and change of nature.
The psychology has therefore two parts: (1) the general theory
of animal souls, which possesses rich suggestions; (2) the doctrine
of the Nous as the distinctive characteristic of man. These are the
empirical and speculative sides to Aristotle’s psychology.
(a) The Practical Virtues. The essential thing for the individual to
regard, therefore, is the training of his will by right rational insight.
He should seek to direct his impulses by reason, and not only once
but so many times that the impulses will become rational habits.
This is what Aristotle means by training in virtue. It is continuity in
rational activity; it is a permanent development toward reason; it is
the unfolding of the real Self. Aristotle had regard for the facts of life
when he differed from Socrates, who said that virtue is knowledge.
Aristotle did not conceive the will as psychological power
independent of the reason. He doubted if rational insight was more
powerful than the impulses, when the test comes. Experience often
shows that although we may know what is right, an impulse will
often drive us into habits not guided by reason. This presupposes for
Aristotle a will that is free to choose among the desires that one
which will lead him along the path that reason points out.
(b) The Dianoetic Virtues are the means toward the attainment
of pure rationality for one’s self. The dianoetic virtues are higher
than the practical. They unfold the pure formal activity of the Nous,
and give the most noble and perfect pleasure. Man finds through
them his possible participation in the divine happiness. These
intellectual virtues may be either theoretical or practical insight; in
the latter case, Aristotle means knowledge of the right in art, and
knowledge of justice. But the purest is Wisdom (θεωρία), which is
knowledge for its own sake. It is the knowledge that God has of
himself. Man may approximate this.
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