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ISBN 978-0-309-38036-2 | DOI: 10.17226/21839
Health Literacy and Palliative Care: Workshop Summary
Joe Alper, Rapporteur; Roundtable on Health Literacy; Board on
Population Health and Public Health Practice; Health and Medicine
Division; National Academies of Sciences, Engineering, and
Medicine
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Joe Alper, Rapporteur
Roundtable on Health Literacy
Board on Population Health and Public Health Practice
Health and Medicine Division
Health Literacy
Palliative Care
AND
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences
and the Aetna Foundation; the Agency for Healthcare Research and Quality
(HHSP233200900537P); American Dental Association; Bristol-Myers Squibb;
East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company;
Health Literacy Missouri; Health Literacy Partners; Health Resources and Services
Administration (HHSH25034004T); Humana; Institute for Healthcare Advancement;
Merck & Co., Inc.; National Institutes of Health; North Shore–Long Island
Jewish Health System; Office of Disease Prevention and Health Promotion; and
UnitedHealth
Group. 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.
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Suggested citation: National Academies of Sciences, Engineering, and Medicine.
2016. Health literacy and palliative care: Workshop summary. Washington, DC:
The National Academies Press. doi: 10.17226/21839.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
The National Academy of Sciences was established in 1863 by an Act of Congress,
signed by President Lincoln, as a private, nongovernmental institution to advise
the nation on issues related to science and technology.
Members are elected by
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Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
v
PLANNING COMMITTEE ON
HEALTH LITERACY AND PALLIATIVE CARE1
CINDY BRACH, Senior Health Policy Researcher, Agency for Healthcare
Research and Quality
MARIAN GRANT, Assistant Professor of Organizational Systems and
Adult Health, University of Maryland School of Nursing
RENEE McLEOD-SORDJAN, Director, Division of Medical Ethics,
North Shore University Hospital, Long Island Jewish Medical Center
and Nassau University Medical Center
DIANE MEIER, Director, Center to Advance Palliative Care and Vice-
Chair for Public Policy and Professor of Geriatrics and Palliative
Medicine, Icahn School of Medicine at Mount Sinai
YAEL SCHENKER, Assistant Professor, Division of General Internal
Medicine, Section of Palliative Care and Medical Ethics, University of
Pittsburgh
PAUL SCHYVE, Senior Advisor for Quality Improvement, The Joint
Commission
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 workshop summary rests with the workshop rapporteur
and the institution.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
vii
ROUNDTABLE ON HEALTH LITERACY1
BERNARD ROSOF (Chair), Chief Executive Officer, Quality in Healthcare
Advisory Group, LLC
MARIN P. ALLEN, Deputy Associate Director for Communications and
Public Liason and Director of Public Information, National Institutes
of Health
WILMA ALVARADO-LITTLE, Principal and Founder, Alvarado-Little
Consulting, LLC
SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of
Biomedical Informatics, Columbia University
CINDY BRACH, Senior Health Policy Researcher, Agency for Healthcare
Research and Quality
GEM DAUS, Public Health Analyst, Health Resources and Services
Administration
TERRY DAVIS, Professor of Medicine and Pediatrics, Louisiana State
University Health Sciences Center
CHRISTOPHER DEZII, Director, Healthcare Quality and Performance
Measures, Bristol-Myers Squibb Company
JENNIFER DILLAHA, Medical Director for Immunizations, Medical
Advisor, Health Literacy and Communication, Arkansas Department
of Health
ALICIA FERNANDEZ, Professor of Clinical Medicine, University of
California, San Francisco
LAURIE FRANCIS, Senior Director of Clinic Operations and Quality,
Oregon Primary Care Association
GARTH GRAHAM, President, Aetna Foundation
LORI HALL, Consultant, Health Education, Eli Lilly and Company
LINDA HARRIS, Division Director, Health Communication and eHealth
Team, U.S. Department of Health and Human Services
BETSY L. HUMPHREYS, Deputy Director, National Library of Medicine
MARGARET LOVELAND, Senior Director, Global Medical Affairs,
Merck & Co.
LAURIE MYERS, Leader of Health Literacy Strategy, Merck & Co.
CATINA O’LEARY, President and Chief Executive Officer, Health
Literacy Missouri
MICHAEL PAASCHE-ORLOW, Associate Professor of Medicine, Boston
University School of Medicine
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables
do not issues, review, or approve individual documents. The responsibility for the published
workshop summary rests with the workshop rapporteur and the institution.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
viii
TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners,
LLC
KIM PARSON, Strategic Consultant, Proactive Care Strategies, Humana
KAVITA PATEL, Managing Director for Clinical Transformation and
Delivery, The Brookings Institution
ANDREW PLEASANT, Senior Director for Health Literacy and
Research, Canyon Ranch Institution
LINDSEY A. ROBINSON, Thirteenth District Trustee, American Dental
Association
STACEY ROSEN, Associate Professor of Cardiology and Vice President,
Women’s Health, The Katz Institute for Women’s Health, Hofstra
North Shore–Long Island Jewish School of Medicine
RIMA RUDD, Senior Lecturer on Health Literacy, Education, and Policy,
Harvard School of Public Health
STEVEN RUSH, Director, Health Literacy Innovations, UnitedHealth
Group
PAUL M. SCHYVE, Senior Advisor, Healthcare Improvement, The Joint
Commission
MICHAEL VILLAIRE, Chief Executive Officer, Institute for Healthcare
Advancement
EARNESTINE WILLIS, Kellner Professor in Pediatrics, Medical College
of Wisconsin
MICHAEL WOLF, Professor, Medicine and Learning Sciences, Associate
Division Chief–Research Division of General Internal Medicine,
Feinberg School of Medicine, Northwestern University
WINSTON WONG, Medical Director, Community Benefit Disparities
Improvement and Quality Initiatives, Kaiser Permanente
HMD Staff
LYLA HERNANDEZ, Senior Program Officer
MELISSA FRENCH, Associate Program Officer
EMILY VOLLBRECHT, Senior Program Assistant
ROSE MARIE MARTINEZ, Director, Board on Population Health and
Public Health Practice
Consultant
RUTH PARKER, Professor of Medicine, Pediatrics, and Public Health,
Emory University School of Medicine
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
ix
Reviewers
This workshop summary has been reviewed in draft form by individuals
chosen for their diverse perspectives and technical expertise. The
purpose of this independent review is to provide candid and critical
comments that will assist the institution in making its published workshop
summary as sound as possible and to ensure that the workshop summary
meets institutional standards for objectivity, evidence, and responsiveness
to the study charge. The review comments and draft manuscript remain
confidential to protect the integrity of the process. We wish to thank the
following individuals for their review of this workshop summary:
CONSTANCE DAHLIN, Hospice and Palliative Nurses Association
JERI L. MILLER, National Institute of Nursing Research, National
Institutes of Health
CATINA O’LEARY, Health Literacy Missouri
CARDINALE B. SMITH, Icahn School of Medicine at Mount Sinai
Hospital
Although the reviewers listed above have provided many constructive
comments and suggestions, they did not see the final draft of the workshop
summary before its release. The review of this workshop summary was
overseen by Georges Benjamin, American Public Health Association. He was
responsible for making certain that an independent examination of this workshop
summary was carried out in accordance with institutional procedures
and that all review comments were carefully considered. Responsibility for
the final content of this workshop summary rests entirely with the rapporteur
and the institution.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
xi
Acknowledgments
The sponsors of the Roundtable on Health Literacy have made it
possible to plan and conduct the workshop Health Literacy and
Palliative Care, which this report summarizes. Non-federal sponsorship
of the Roundtable was provided by the Aetna Foundation; American
Dental Association; Bristol-Myers Squibb; East Bay Community Foundation
(Kaiser Permanente); Eli Lilly and Company; Health Literacy Missouri;
Health Literacy Partners; Humana; Institute for Healthcare Advancement;
Merck & Co., Inc.; North Shore–Long Island Jewish Health System; and
UnitedHealth Group. Federal sponsorship was provided by the Agency for
Healthcare Research and Quality; Health Resources and Services Administration;
National Institutes of Health; and Office of Disease Prevention
and Health Promotion.
The Roundtable wishes to express its appreciation to the following
speakers at the workshop for their interesting and stimulating presentations:
Beverly Alves, Robert Arnold, John Cagle, Richard Freeman, Anne
Kinderman, Carol Levine, Dana Lustbader, Virginia Marshall, Diane Meier,
Stacie Pinderhughes, Tyrone Pitts, Justin Sanders, Thomas Smith, and
Elaine Wittenberg.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
xiii
Contents
ACRONYMS AND ABBREVIATIONS xvii
1 INTRODUCTION 1
Organization of the Summary, 2
2 COMMUNICATION: PALLIATIVE CARE’S
TRANSFORMATIVE PROCEDURE 5
3 INTERPERSONAL COMMUNICATION 17
Perspectives of a Patient’s Wife, 17
Communicating Prognosis, 22
Serious Illness Communication Program, 29
Discussion, 34
4 PROFESSIONAL TRAINING 41
Teaching Communication Skills to Clinicians, 41
Nurse Training, 44
Discussion, 47
5 INTEGRATED CARE TEAMS 51
How to Bring Spiritual Care into Palliative Care, 51
A Family Caregiver’s Perspective, 54
A Social Work Perspective, 58
A Nursing Perspective, 62
Discussion, 65
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
xiv CONTENTS
6 HEALTH LITERACY IN PALLIATIVE CARE
PROGRAMS 71
Health Literacy and Palliative Care in a Large Health System, 72
A Home-Based Palliative Care Program, 75
Helping Patients Navigate Difficult Decisions in the Hospital, 79
A Faith-Based Movement to Transform Health Disparities, 84
Discussion, 88
7 REFLECTIONS ON THE WORKSHOP 95
REFERENCES 101
APPENDIXES
A Workshop Agenda 107
B Biographical Sketches of Workshop Speakers and Moderators 111
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
xv
Figures and Tables
FIGURES
2-1 Concentration of health care spending among the top spenders, 6
2-2 Distribution of enrollees by groups of enrollees, 9
2-3 Ratio of social services to health services expenditures for OECD
countries, 2005, 10
2-4 A conceptual shift for palliative care, 11
2-5 The value of palliative care at home for the chronically ill, 12
3-1 Improvement in prognostic awareness among patients receiving
palliative care, 23
3-2 Palliative care allows cancer patients to experience less depression
and anxiety, 24
3-3 Decision aid to answer the question, “What is my chance of this
cancer shrinking by half?” for patients receiving third-line therapy
for stage IV lung cancer, 27
3-4 Modifying practice patterns to improve patient outcomes, 28
3-5 Temporary tattoo listing important questions for patients and
providers, 28
3-6 Many factors play a role in the power differentials that affect
health literacy, 32
4-1 A computer-aided approach to teaching communication skills, 44
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
xvi FIGURES AND TABLES
5-1 A graphical representation of the multidimensional nature of
palliative care, 59
5-2 Social determinants of health, 59
6-1 Two examples of health literate, written information available at
San Francisco General Hospital, 82
6-2 Instructions for California’s low health literacy advance directive
form, 83
6-3 Brochure for family members of patients who have died, 84
6-4 Cue cards for patients with limited English proficiency, 85
TABLES
2-1 Use of Health Services by Medicare and Medicaid Patients with
and Without Dementia, 9
5-1 United Hospital Fund’s Comparison of Hospice and Palliative
Care, 57
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
xvii
Acronyms and Abbreviations
ACO accountable care organization
AHRQ Agency for Healthcare Research and Quality
CAPC Center to Advance Palliative Care
COPD chronic obstructive pulmonary disease
CT computed tomography
C-TAC Coalition to Transform Advanced Care
DNR do-not-resuscitate order
ELNEC End-of-Life Nursing Education Consortium
EMR electronic medical record
FBO faith-based organization
GERD gastroesophageal reflux disease
ICU intensive care unit
MOLST Medical Orders for Life-Sustaining Treatment
NCI National Cancer Institute
OECD Organisation for Economic Co-operation and Development
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
xviii ACRONYMS AND ABBREVIATIONS
POLST Physician Orders for Life-Sustaining Treatment
SNF skilled nursing facility
TAME time, assessment, management, and education
TPN total parenteral nutrition
UPMC University of Pittsburgh Medical Center Health System
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
1
1
Introduction1
“Palliative care provides a specialized, holistic approach to providing
medical care for people with very serious illnesses, and the
focus of palliative care is on providing relief from symptoms
and improving the quality of life for patients,” said Bernard Rosof, Chief
Executive Officer of the Quality in Healthcare Advisory Group, as an
introduction to the topic of this workshop on health literacy and palliative
care.2 “It is our hope that this workshop will help to further disseminate
knowledge about the need for and the benefits of palliative care, and in
particular, about how important it is to organize and deliver this care in a
health literate manner.”
In general, said Rosof, low health literacy is a barrier to receiving
high-quality health care, but this is particularly salient for people living
with serious or chronic illnesses requiring complex management regimens,
having significant symptoms, or involving treatment with significant side
effects. The ability to understand the scope of the illness, what is necessary
to treat the illness, and how to live with serious illness as comfortably as
1 The planning committee’s role was limited to planning the workshop, and the workshop
summary has been prepared by the workshop rapporteur as a factual summary of what occurred
at the workshop. Statements, recommendations, and opinions expressed are those of
individual presenters and participants, and are not necessarily endorsed or verified by the
National Academies of Sciences, Engineering, and Medicine, and they should not be construed
as reflecting any group consensus.
2 This section is based on the presentation by Bernard Rosof, Chief Executive Officer of
the Quality in Healthcare Advisory Group, and the statements are not endorsed or verified
by the National Academies of Sciences, Engineering, and Medicine.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
2 HEALTH LITERACY AND PALLIATIVE CARE
possible is a critical factor in determining patient treatment outcomes and
quality of life.
To explore the relationship between palliative care and health literacy,
and the importance of health literate communication in providing highquality
delivery of palliative care, the National Academies of Sciences,
Engineering, and Medicine’s Roundtable on Health Literacy convened this
1-day public workshop featuring presentations and discussions that examined
the effect of low health literacy on all aspects of palliative care. The
statement of task for this workshop is below:
An ad hoc committee will plan and conduct a public workshop to explore
the impact of health literacy on palliative care. The workshop will feature
invited presentations and discussions of the effect of low health literacy
on all aspects of palliative care. The topic may encompass but will not
be limited to end-of-life care and may also cover shared decision making,
chronic disease and pain management, care models and other areas of
interest within palliative care. It will also include the interaction between
patients and patient families and providers, as well as the knowledge of
palliative care and its principles among providers. The committee will
define the specific topics to be addressed, develop the agenda, select and
invite speakers and other participants, and moderate the discussions. An
individually authored summary of the presentations and discussions at the
workshop will be prepared by a designated rapporteur in accordance with
institutional guidelines.
Rosof noted that the workshop was designed to include the interaction
between patients, their families, and providers, as well as the knowledge
of palliative care and its principles among providers. The workshop featured
invited presentations and discussions on topics that included the role
of interpersonal communication between health care team members and
patients and their families, the need to train health care team members on
appropriate communication skills, and the role of integrated care teams in
providing palliative care. The workshop also provided examples of successful
palliative care programs from a variety of settings.
ORGANIZATION OF THE SUMMARY
The workshop (see Appendix A for the agenda) was organized by an
independent planning committee in accordance with the procedures of the
Academies. The planning committee’s members were Cindy Brach, Marian
Grant, Renee McLeod-Sordjan, Diane Meier, Yael Schenker, and Paul
Schyve. This publication summarizes the discussions that occurred throughout
the workshop and highlights the key lessons presented, practical strategies,
and the needs and opportunities for improving health literacy in the
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTRODUCTION 3
United States. Chapter 2 provides an overview of the link between palliative
care and health and the case for integrating palliative care principles and
practices across the entire spectrum of health care for individuals with a
serious illness. Chapter 3 discusses interpersonal communication and the
patient experience and includes the perspective of a patient’s spouse who
had to serve as the primary caregiver with little external support. Chapter
4 explores the need to improve the communication skills of health team
members and some of the strategies that can be used to improve those skills.
Chapter 5 lays out the case for delivering palliative care using integrated
teams that include family members, social workers, nurses, and spiritual
advisors. Chapter 6 provides examples of successful programs for delivering
palliative care in four different settings. Chapter 7 covers the Roundtable’s
reflections on the key lessons learned at this workshop.
In accordance with the policies of the Academies, the workshop did
not attempt to establish any conclusions or recommendations about needs
and future directions, focusing instead on issues identified by the speakers
and workshop participants. In addition, the organizing committee’s role
was limited to planning the workshop. The workshop summary has been
prepared by workshop rapporteur
Joe Alper as a factual summary of what
occurred at the workshop.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
5
2
Communication: Palliative Care’s
Transformational Procedure1
The workshop opened with an overview presentation by Diane Meier,
Director of the Center to Advance Palliative Care (CAPC) and Vice-
Chair for Public Policy, Professor of Geriatrics and Palliative Medicine,
and the Catherine Gaisman Professor of Medical Ethics at the Icahn
School of Medicine at Mount Sinai Hospital, who made the case for integrating
palliative care principles and practices across the entire health
care spectrum for anybody with a serious illness. Before addressing that
topic, she noted that the real challenge in health literacy does not rest with
patients and their families, as many discussions on the topic assume, but
with the health system. “The obligation to be literate in what matters most
to patients and families is ours. It is not their obligation to be literate about
our culture.”
Health spending, she then said, is highly concentrated among the sickest
patients (see Figure 2-1), which she said is appropriate. “Spending
money on very sick people is not waste,” Meier emphasized. “How we
spend that money is a different question, but conflating high spending
with waste should stop.” Health care spending data show that 1 percent
of patients, the sickest and most vulnerable, account for 25 percent of all
spending, and 5 percent of patients account for 50 percent (Schoenman
1 This section is based on the presentation by Diane Meier, Director of the Center to
Advance
Palliative Care (CAPC) and Vice-Chair for Public Policy, Professor of Geriatrics
and Palliative Medicine, and the Catherine Gaisman Professor of Medical Ethics at the Icahn
School of Medicine at Mount Sinai Hospital. The statements are not endorsed or verified by
the National Academies of Sciences, Engineering, and Medicine.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
6 HEALTH LITERACY AND PALLIATIVE CARE
FIGURE 2-1 Concentration of health care spending among the top spenders.
SOURCE: Schoenman and Chockley, 2012.
and Chockley, 2012). Given data showing the positive effect of palliative
care on both the quality of care and the cost of care for the sickest patients
(Meier, 2011), applying the principles and practices of palliative care more
broadly is crucial to any effort to improve value in the U.S. health system,
said Meier.
As an example of an illiterate health system, Meier recounted the story
of Mr. B., an 88-year-old man with dementia who was admitted to the
emergency department for management of back pain resulting from spinal
stenosis
and arthritis. Upon admission, his pain registered 8 on a scale of
10, and his 83-year-old wife reported he was taking 5 grams of acetaminophen
daily for pain, a toxic dose. Mr. B. had been seen four times in the
emergency department over the previous 3 months, and though Mr. B.
pleaded not to be taken to the hospital again, Mrs. B. felt she had no choice
but to call an ambulance given that her husband’s pain was terrible and that
she could not move him herself, Meier recounted.
Meier became involved with Mr. and Mrs. B. when the attending physician
in the emergency department called her and said he had a couple
who were “abusing the emergency department for lower back pain” and
wondered if she could see them even though the patient was not dying.
Meier went down to the emergency department with her medical student
and found Mr. B. in terrible pain and agitated from being brought to the
emergency department—Mrs. B. had tried reaching Mr. B.’s doctor after
hours and had gotten a voice recording saying “If this is a medical emerCopyright
© National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
COMMUNICATION 7
gency, hang up and call 911,” which is what she did. “Who is illiterate
here?” said Meier. “She did exactly as she was told because it was a medical
emergency. She could not move him, and there was nobody available to
help her. Yet the perspective on our side is that this couple is abusing the
emergency room.”
Before what she called her accidental and fortuitous involvement with
Mr. B., he had been subjected to four ambulance rides to the emergency
department, been hospitalized three times, developed a urinary tract infection
from having been catheterized and became septic, and was declining
functionally and cognitively simply from being hospitalized and suffering
from complications. In addition, the family—primarily Mrs. B.—was in
enormous distress, explained Meier. She noted that the attending physician
had called Meier not because it was hospital policy, and not because of any
intent to improve quality for patients like Mr. B. and his family, but because
he had been a medical student at Mount Sinai years earlier and had spent
a 1-week mandatory rotation in the palliative care service and happened to
have been assigned to her. “Obviously, this should happen by design, not
by accident,” said Meier.
After spending considerable time with Mr. and Mrs. B. assessing the
situation, Meier decided to try ultra-low-dose morphine to see if that could
address Mr. B.’s back pain and MiraLax for his constipation. Again, good
fortune came into play because the pharmacy across the street from Mount
Sinai carried the necessary formulation, an uncommon occurrence. While
the student was fetching the prescription, Mr. B. had received a minute
dose of morphine, which he tolerated well and enabled him to relax and
even walk to the bathroom. Meier spent time teaching Mrs. B. how to
administer the ultra-low-dose morphine and MiraLax, writing instructions
in block capital letters and using teach back to ensure she understood
the directions. Meier noted that it took three tries before her instructions
were clear enough for her to become convinced that Mrs. B. knew what
to do. She also phoned the director of Mount Sinai’s house calls program
and arranged for a visit to the family’s home the next morning. What the
visiting team found was a disaster waiting to happen, said Meier. There
were loose throw rugs everywhere, electrical wires crisscrossing the floor,
no grab bars in the bathroom, no elevated toilet seat, and the only thing in
the refrigerator was leftover Chinese food. “Why was that?” asked Meier.
“Mrs. B. could not go out to go grocery shopping because she could not
leave Mr. B. alone. He would freak out and either try to follow her or fall
in trying to follow her.” Lacking a computer, Mrs. B. could not order food
from one of the delivery services operating in New York, but she did have
a phone and called the Chinese restaurant next door.
With the family’s permission, Meier contacted the church where Mr.
and Mrs. B. had gone before traveling became a problem. It turns out that
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
8
there was a new pastor at the church who had not known the couple and so
did not realize they were no longer attending services, but who immediately
connected them to the church’s friendly visitor program. Now, a member of
the congregation or a high school student in a community service program
spends a few hours with Mr. B. three times per week, enabling Mrs. B. to
go shopping and spend time with her friends, which Meier said was probably
the most important result of her involvement with this family. The
palliative care service also organized Meals on Wheels for the family and
contacted a daughter living in California, who now orders groceries online
for her parents and visits them more often now that she knows what was
happening back in New York. The end result is that 2 years later, Mr. B. is
doing fine, and there have been no 911 calls, emergency department visits,
and no hospitalizations since Meier’s initial involvement.
Mr. B.’s experience is not atypical, said Meier, who noted data showing
that 75 percent of older Americans visit the emergency department at least
once in the last 6 months of their lives because they do not see an alternative
(Smith et al., 2012). These patients, she said, are typically not end-stage
cancer patients, and most do not have a serious disease. Rather, she said,
they are “condition driven.” Mr. B., for example, did not have heart failure,
cancer, chronic obstructive pulmonary disease (COPD), or end-stage renal
disease. He was simply frail, and impaired, both cognitively and functionally.
“Being old plus caregiver exhaustion are driving his utilization,” said
Meier.
Health systems, she said, should be screening patients for palliative care
using criteria that include functional limitation, frailty, dementia, exhausted
and overwhelmed family caregivers, and social and behavioral health challenges,
and she noted that data from the Medicare Current Beneficiary
Survey support these criteria (see Figure 2-2). For example, 61 percent of
the top 5 percent of spenders are functionally impaired, suggesting that
functional status would be the single most important criteria for targeting
high-risk patients, yet the most widely used electronic health records do not
require documentation of functional status.
Dementia, she said, is another major predictor of risk for high levels of
spending (see Table 2-1), largely, she added, because of caregiver exhaustion
that results from a lack of social supports. She cited data (Bradley et al.,
2011) showing that the United States has among the lowest ratios of social
services to health services expenditures among countries in the Organisation
for Economic Co-operation and Development (OECD) (see Figure 2-3).
Belgium, Denmark, Germany, Italy, and Sweden, for example, spend about
$2.70 on social supports for every dollar spent on medical care. In contrast,
the United States spends 70 cents on social supports for every dollar spent
on medical care. “Hence the dementia data,” said Meier. “Hospitals are a
substitute for absent social supports.”
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
COMMUNICATION 9
7% 1%
31%
12%
7%
48%
41%
32%
15% 46% 61%
Chronic conditions and
functional limitations
3 or more chronic
conditions only
1-2 chronic conditions
only
No chronic conditions
All
Enrollees
Top 20% of
Medicare
Spenders
Top 5% of
Medicare
Spenders
TABLE 2-1 Use of Health Services by Medicare and Medicaid Patients
with and Without Dementia
Dementia No Dementia
Medicare SNF use 44.7% 11.4%
Medicaid NH use 21% 1.4%
Hospital use 76.2% 51.2%
Home health use 55.7% 27.3%
Transitions 11.2% 3.8%
NOTE: NH = nonhospital; SNF = skilled nursing facility.
SOURCE: Presented by Diane Meier on July 9, 2015.
FIGURE 2-2 Distribution of enrollees by groups of enrollees.
SOURCE: Presented by Diane Meier on July 9, 2015.
When this country does experiment with a more rational allocation
of funding that helps patients stay at home, quality does improve and
spending falls, she noted. Based on reports from the 25 states that allow
Medicaid to pay for home- and community-based long-term services and
supports, rather than incentivizing them to go into a nursing home, patients
who take advantage of that waiver cost the system one-third as much as
those who choose nursing home care (Thomas, 2014). Similarly, increasing
funds for Meals on Wheels programs by 1 percent nationally would keep
an estimated 1,722 older adults with low-care needs out of nursing homes
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
10 HEALTH LITERACY AND PALLIATIVE CARE
and save 26 states an estimated $109 million in reduced Medicaid spending,
which would more than offset the cost of providing the meals (Thomas
and Mor, 2013). Unfortunately, Meier added, funds for Meals on Wheels
were cut in half during the federal budget sequester, and these funds have
yet to be restored.
In explaining what palliative care is, Meier emphasized that the definition
that Bernard Rosof gave in his introductory remarks does not mention
prognosis, end-of-life care, death, or dying. Rather, it focuses on improving
quality of life by addressing pain, symptoms, and the stress associated with
serious illness. Mr. B., for example, was not dying and is doing well with the
supports that were put in place. He would not, in fact, be eligible for hospice
care, which is what many people associate with palliative care. “Is he
benefiting from palliative care? Enormously,” said Meier. “If we stick to
prognostic criteria, we are missing the boat.”
Palliative care is provided by an interdisciplinary team that works with
patients, families, and other health care professionals to provide an added
layer of support, Meier explained. It is appropriate at any age, for any
diagnosis, and at any stage in a serious illness. It is important to make a
FIGURE 2-3 Ratio of social services to health services expenditures for OECD
countries, 2005.
NOTE: OECD = Organisation for Economic Co-operation and Development.
* Expenditures for Portugal are from 2004, owing to missing data for 2005.
SOURCE: Bradley et al., 2011.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
COMMUNICATION 11
conceptual shift, she added, that moves away from thinking about palliative
care as something that occurs when there is nothing more that can be
done for a person to thinking about it as care delivered at the same time as
treatment (see Figure 2-4).
Data show clearly that palliative care improves quality and by doing
so reduces spending and does so, said Meier, not by rationing health care
dollars or withholding necessary care but by heading off preventable crises
and meeting people’s needs where they are, including nursing homes. As
an example of palliative care in a nursing home setting, she recommended
an article in The New Yorker (Mead, 2013) that described how an Arizona
nursing home focuses care for dementia patients on what the residents
say they need as opposed to doing so on strict schedules and regulatory
requirements. To illustrate the power of palliative care in the home setting,
she cited a randomized controlled trial from Kaiser Permanente in
which patients with heart failure, COPD, or cancer were enrolled in either
a home palliative care intervention or usual Medicare home care. Though
the patients in the palliative care intervention received more home visits,
they required fewer physician office visits, used the emergency department
less, were hospitalized less, and spent fewer days in skilled nursing facilities
(Brumley et al., 2007) (see Figure 2-5). Meier noted that Kaiser Permanente
can measure and capture these cost savings because of the way its system
is organized.
She then listed five key characteristics of effective palliative care:
1. It targets the highest risk people.
2. It asks them what matters most to them.
3. It supports family and other caregivers.
Medicare
Hospice
Benefit
Life Prolonging Care Not
this
Palliative Care
Hospice Care Life Prolonging
Care
But
this
FIGURDEx 2-4 A conceptual shift for palliative care. Death
SOURCE: Presented by Diane Meier on July 9, 2015.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
12 HEALTH LITERACY AND PALLIATIVE CARE
4. It includes expert pain and symptom management.
5. It provides 24-hour access to services, 7 days per week.
The place where health literacy is most involved, explained Meier, is
in goal setting, which requires asking the person and family what is most
important to them, and she told the stories of four of her patients to illustrate
this point. The first story was that of Mr. R., a 67-year-old Latino man
that she met on the palliative care service after he had been on a ventilator
in the hospital for 4 months. Meier asked Mr. R., who had no family visitors,
if he wanted to be removed from the ventilator and allowed to die,
and he did not. After fitting his tracheotomy tube with a speaker valve
and bringing in a Spanish translator, Meier discovered Mr. R. had a son he
wanted to see. After a great deal of research, the staff social worker located
a son in Chicago and paid his way to New York to visit his father. The son
revealed that his father had been terribly abusive to him and his siblings,
and none of them had seen their father for decades. Nonetheless, the son
came, the father asked for forgiveness, and the son forgave his father. The
patient died on his own the next day. “Where is the illiteracy here?” asked
Meier.
She then told the story of Mr. W., a 44-year-old man with acquired
immunodeficiency syndrome (AIDS) encephalopathy who had been on a
13.2
11.1
2.3
9.4
4.6
35.0
5.3
0.9
2.4
0.9
0
10
20
30
40
Home health
visits
Physician
office visits
ER visits Hospital days SNF days
Usual Medicare home care Palliative care intervention
FIGURE 2-5 The value of palliative care at home for the chronically ill.
NOTE: ER = emergency room; SNF = skilled nursing facility.
SOURCE: Presented by Diane Meier on July 9, 2015.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
COMMUNICATION 13
ventilator, dependent on total parenteral nutrition (TPN), and unresponsive
for 2 months. Still, his mother and sister, one of whom was always at
his bedside, refused to let him die, and staff was angry, considering this
behavior abusive to the patient. Over a weekend, Meier sat down with the
mother and sister and asked what they were hoping to accomplish. The
response was logical: they wanted to fatten him up so that the open coffin,
which was mandatory in their faith community, would not make it obvious
that he had died of AIDS. After Meier explained that TPN would not
reverse the muscle wasting that had occurred and that the funeral home
could do much more to restore his looks, the family decided to remove
support and Mr. W. passed away that Monday.
Mrs. P., a 60-year-old first-generation Greek immigrant who ran a hot
dog stand in Central Park, had a witnessed cardiac arrest in Central Park,
was resuscitated by a bystander, but had severe anoxic encephalopathy and
never regained consciousness. Though she still had brain activity, she had
spent 6 months on a ventilator receiving TPN and had developed the worst
pressure ulcers anyone on staff had ever seen. Her three adult children visited
regularly, frequently coming to blows in the intensive care unit (ICU)
and requiring the intervention of hospital security personnel, but it was her
daughter’s behavior that led staff to call Meier to intervene. This daughter
spent every day at her mother’s bedside and brought her 6-year-old after
school to sleep on a hard plastic chair next to her grandmother’s bed every
evening, which staff felt was abusive. Meier and a nurse she works with
sat down with the daughter and asked her to tell them about her family.
“Out poured this incredible story of child abuse by this mother and all
of the sudden the behavior made perfect sense,” said Meier. This family
was used to suffering—that is what they did to each other. As soon as the
daughter became conscious of this fact, she agreed to take her mother off
of the ventilator. “Nobody had asked what the back story was,” said Meier.
Her final tale was about Jenny, who’s story Meier had told in an article
for Health Affairs with the approval of the patient and her family (Meier,
2014). The article, Meier explained, was an oncologist’s response to her
question about what he hoped to accomplish with intrathecal chemotherapy
for Jenny, a nonsmoker diagnosed at 59 with non-small-cell lung cancer
that had metastasized to the brain. Meier had been on Jenny’s care team for
2 years because Jenny, a psychologist, knew that her oncologist could not
talk to her about what would happen as the disease progressed. Toward the
end of her life, the oncologist offered intrathecal chemotherapy, and Jenny
asked Meier what she thought about this treatment. Not knowing enough
to respond then, she told Jenny that she or the oncologist would get back to
her. Meier went to her colleague and asked him what he hoped to accomplish
with this procedure, and after a long pause, he said it would not help
her but that he did not want Jenny to think he was abandoning her. “The
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
14 HEALTH LITERACY AND PALLIATIVE CARE
oncologist did not know any other way of showing his care and love for his
patient other than to give her intrathecal chemotherapy because his training
included nothing about accompanying patients when chemotherapy no
longer helps,” said Meier. She added, “I am very grateful to that oncologist
because he taught me more than I ever had understood before about what
motivates my colleagues when they do things that don’t make sense to me.
It is love. It is not venality. It is not greed. It is not indifference.”
Though initially given a prognosis of 6 to 12 months to live, Jenny lived
more than 6 years after her diagnosis thanks to the efforts of her oncologist,
enjoying many trips to Europe with her husband and daughter. Over the
last year of her life, she received both palliative care and treatment as her
symptoms worsened, and when treatment was no longer effective she was
referred to hospice at her home. When Meier went to visit her there, all
Jenny wanted to talk about was how her oncologist never called or came
to visit and how hurt she was by that. With her permission, Meier called
the oncologist and told him that Jenny wanted him to visit, but he did not
understand why because there was nothing he could do for her. “She wants
to see you to thank you and say goodbye, that she is very grateful to you,”
Meier told her colleague. He did visit her and she died soon after.
Literacy and palliative care intersect at the question, “What is most
important?” said Meier, and she cited the results of a survey of older people
at a senior center and assisted living facility who were asked to rank the
order of what was most important: living longer, achieving symptom relief,
or remaining independent (Fried et al., 2011). Some 76 percent of these
seniors responded that independence was the most important, followed by
pain and symptom relief, with staying alive ranking last. “How is the health
care system designed?” asked Meier. “Just the opposite.”
Meier noted that some 40 million family caregivers like Mrs. B. provide
37 billion hours of unpaid care worth $470 billion per year while putting
themselves at high risk of death, disease, and personal bankruptcy. She also
quoted from a book by Atul Gawande (2014), who said, “I learned a lot
of things in medical school, but mortality wasn’t one of them,” and from
The New Yorker cartoon by Peter Vey (2003) in which a doctor is telling
his patient, “There is no easy way I can tell you this, so I’m sending you to
someone who can.” While these anecdotal comments point out the challenge
of addressing health literacy as a problem of the health system, not
of patients and families, Meier said that there is hope thanks to the eight
Institute of Medicine (IOM) reports calling for better access to palliative
care. “The IOM report that I was privileged to participate in calls for palliative
care as a standard of care essentially for people with serious complex
illness,” said Meier.
What has to happen to realize the IOM’s recommendations, she said,
is that the practices that are helping Mr. and Mrs. B. have to be expanded
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
COMMUNICATION 15
to the home and community setting for every patient with a serious illness.
Every oncologist, cardiologist, primary care doctor, and nurse in a nursing
home have to be trained in the core principles and practices of palliative
care because there will never be enough palliative care specialists to come
close to meeting the nation’s needs. She applauded the American Cancer
Society for running a series of ads that illustrate the importance of palliative
care. These ads, she said, convey the central idea that palliative care sees the
person beyond the cancer treatment and gives the patient control, and they
make the point that palliative care represents a big shift in focus for health
care delivery that works to improve the lives of patients. She closed her
comments by noting that in the past, physicians considered themselves successful
when they cured ovarian cancer or myeloma even though patients
lived with terrible consequences of this treatment, such as severe neuropathic
pain. In contrast, patients today are living longer and with a better
quality of life thanks to the incorporation of palliative care principles.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
17
The workshop’s first panel session featured three presentations that
explored the role of interpersonal communication in determining
how patients experience palliative care. Beverly Alves, a patient
advocate and retired teacher who was on the steering committee for Single
Payer New York and the National Coalition Leadership Conference for
Guaranteed Health Care, recounted her experiences with the health care
system when her husband was diagnosed with pancreatic cancer. Thomas
Smith, Director of Palliative Care for Johns Hopkins Medicine and the
Hopkins’ Sidney Kimmel Comprehensive Cancer Center, then spoke about
the challenges physicians face in communicating prognosis to patients.
Justin Sanders, Research Fellow with the Serious Illness Care Program
at Ariadne Labs, Instructor in Medicine at Harvard Medical School, and
an attending physician in the Psychosocial Oncology and Palliative Care
department at the Dana-Farber Cancer Institute and the Brigham and
Women’s Hospital, concluded the presentations by describing how health
literacy hits into a scalable intervention to improve serious illness care. An
open discussion moderated by Diane Meier followed the three talks.
PERSPECTIVES OF A PATIENT’S WIFE1
On October 4, 2006, Beverly and Joe Alves received a phone call that
changed their lives forever. To that point, Joe was physically healthy but had
1 This section is based on the presentation by Beverly Alves, patient advocate and retired
teacher, and the statements are not endorsed or verified by the National Academies of Sciences,
Engineering, and Medicine.
3
Interpersonal Communication
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
18 HEALTH LITERACY AND PALLIATIVE CARE
developed a backache after moving a large part of a tree that had fallen in
the road. When his back was still hurting 6 weeks later, Beverly finally convinced
Joe to see his doctor, who agreed with Joe that he had pulled a muscle
and to give his back some more time to heal. Some weeks later, a doctor
friend of theirs encouraged Joe to see a gastroenterologist given that he was
also experiencing some mild symptoms of gastroesophageal reflux disease
(GERD). The gastroenterologist also suspected Joe had a pulled muscle, but
to be sure, he ordered a computed tomography (CT) scan, which revealed a
mass on Joe’s pancreas and led to that fateful October phone call and what
became a less-than-optimal experience with the health care system.
“From the moment we learned of the mass to the day Joe passed
on, we were confronted and confounded by a medical system that was
uncoordinated
and unable to deal effectively with what became Joe’s excruciating
pain, our anxiety, stress, and impending loss,” said Alves. “I don’t
believe any one of those things caused Joe’s passing, but if there had been
a comprehensive plan in place with specified criteria, which would have
indicated if and when Joe needed services, it would have done a lot to help
us deal more effectively with the overwhelming crisis of Joe’s illness and
his impending death.”
The problems she and Joe encountered began almost immediately.
To start, the gastroenterologist’s office failed to schedule Joe’s biopsy in
a timely manner, and it took repeated calls from Beverly to schedule the
pancreas and liver biopsies. By then, Joe was in substantial pain, and they
were both anxious to learn what was wrong with him. While waiting for
the biopsies, Beverly began searching for an oncologist. The first one,
recommended by an acquaintance, had such a dehumanizing manner that
they left his office feeling as if Joe was already dead. “He silently read the
reports of Joe’s magnetic resonance imaging (MRI) and CT, making faces
of horror,” she recounted. After giving her husband a cursory exam, he
turned to her, looking into her eyes, and he said there was no hope. “No
hope, while Joe was sitting just a few feet away, and no matter what I said
or asked, this doctor had something negative to say in reply,” said Alves.
“Without hope, there is no life.”
All of this time, Joe was in pain—what was in fact a tumor pressing
on a nerve in his back—and his family physician was writing emergency
prescriptions for pain medications that had to be refilled every 48 hours.
Alves recalled watching her husband counting pills to see if he would have
enough to last 48 hours knowing he needed a higher dose to control his
pain. Making matters worse, Joe and Beverly lived in the country, and getting
to the pharmacy in town in winter was often difficult. “It was a true
nightmare,” said Alves.
Joe finally had a biopsy, except the surgeon did not biopsy Joe’s liver
for some reason. When Beverly tried to query the surgeon, she was interCopyright
© National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 19
cepted by a nurse. “No one seemed to understand or care,” she said. The
gastroenterologist called a few days later, informed Joe that the results of
the biopsy were not good, and then hung up before providing a referral to
an oncologist or a prescription for his intense pain. “We were left on our
own to get Joe the care he needed.”
By then, Beverly had been networking and through a friend got the
name of a surgeon at Albany Medical Center, but when she called to make
an appointment she was told that while the surgeon was available, the
scheduler was out. After 3 days of repeated calls trying to schedule an
appointment, Beverly began to sob, which finally moved someone to schedule
an appointment with the surgeon 2 days later. However, with no liver
biopsy, the surgeon said he could not determine what course of action to
take, and referred Joe for a liver biopsy, which revealed that the cancer had
spread to his liver. The surgeon arranged for Joe to meet with an oncologist.
As soon as Joe learned he had inoperable metastatic pancreatic
cancer,
he volunteered to do clinical trials. “He wanted to do this not only to help
himself, but to help make things better for mankind, and the oncologist said
he would fight this with us together,” said Alves. “We left the hospital that
day with our heads held high with hope in our hearts. The next week was
Thanksgiving, and we had one of the nicest Thanksgivings we had ever had
because we had some hope.”
Unfortunately, during Thanksgiving weekend, Joe’s cancer produced
thrombotic clots, which caused him to have a stroke. There were no neurologists
in the rural county where they lived, so the Alves waited in the
emergency department while the attending physician fruitlessly searched
for neurologists in other areas and Joe became paralyzed. Finally, around
5 a.m., Joe was rushed to Albany Medical Center. “The people who worked
at Albany Med were caring and dedicated, but there was no system to
coordinate care there,” recalled Alves. “The analogy I use is it should have
been a ballet, but instead there were many great ballroom dancers.” Albany
Medical Center, she added, did not have a palliative care program then and
still does not nearly 9 years later.
She remembers Joe being a wonderful patient who did his best to help
those who were helping him. He was stoic despite being in monumental
pain. One night, she recalled, his pain was so intense that he repeatedly
asked for more pain medication. “Joe’s pain became so intense he started
to weep. My heart broke and I wept along with him. When the nurse came
into his room and saw us both weeping, she worriedly asked what is going
on. Joe said we are sharing sorrow,” recounted Alves. The nurse, nearly
brought to tears herself, told them she had made repeated requests to the
pharmacy through both voicemail and e-mail, but there was nobody to
speak to directly in the pharmacy, even in the case of emergency. While Joe
did eventually get additional pain medication, Alves witnessed a similar
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
20 HEALTH LITERACY AND PALLIATIVE CARE
scene the next night in which a young woman, who she characterized as
little more than a girl, was standing at the nurse’s station, weeping and
pleading for pain medication. “This is unacceptable,” said Alves. “It is
inhumane.”
Along with intense pain, Joe was highly anxious, yet he was never
referred to a pain management specialist or given adequate medication for
his anxiety. Alves noted that shortly after her husband died, a psychiatrist
told her that a living will should request medications to reduce pain and
anxiety because the dying process can itself produce anxiety.
One week before Joe passed, he looked very ill, and Beverly asked
the oncologist liaison if her husband needed hospice. The answer was no
because nobody had said he had 6 months or less to live. The same night, a
hospitalist, who she said was a very caring doctor, told her he did not think
Joe would make it through the night. “I was aghast,” said Alves. “Nothing
major had happened during the day. It was just different interpretations of
Joe’s conditions made by different people because there was no coordination
of care.” The hospitalist, she said, had Joe moved to a single room
and staff asked her for directions regarding end-of-life decisions because
they could not find the living will Joe had brought with him to the hospital.
“Watching your loved one die is a terrifying and agonizing experience,”
she said. “It is one thing to be sitting safely in your attorney’s office making
out a living will and another to confront the impending loss of your
beloved. I knew Joe had signed a do-not-resuscitate (DNR) order, but at
that point, I was nearly stuporous.” She asked to speak with the hospital’s
ethicist and while he gave her good advice, he did it over the phone. “When
a patient is dying, family members are in crisis too and also need support,
but I was alone,” Alves recalled.
The ethicist told her to ask her husband what he wanted done if something
happened during the night, but he was in great pain and exhausted
and did not want to discuss anything. When she asked him specifically if
he wanted to be on a ventilator, he did say no, and she gave that information
to staff. Nobody bothered to enter it into his medical record, however,
resulting in further confusion and anguish later that night when a resident
came in to talk to them about ventilation and resuscitation. Joe never got
back to sleep that night, and early that morning he told his wife that the
odds were not in his favor and that he was facing death. Alves was beside
herself, but then she remembered something that Rabbi Pesach Krauss had
written in his book, Why Me? (Krauss and Goldfischer, 1988). Krauss, who
was a chaplain at Memorial Sloan Kettering Cancer Center, wrote that
when he spoke with patients who were very ill and fearful, he would ask
them what they wanted to do with the time they had left. Beverly asked Joe
that question, and he said he wanted to enjoy himself at home. Beverly told
this to Joe’s oncologist, but that doctor, the same one who told them less
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 21
than 1 month before that we would be a partner with them, told her to put
Joe in a nursing home. “I can still remember and probably always will my
knees starting to buckle under me when he told me this,” said Alves. “I felt
like he was just tossing Joe away.”
At that point, her plan was to place Joe in a new hospice facility in
her county for a few days until she could connect with a home health care
planner. The day before his planned move, a hospice nurse visited him, saw
how badly he was suffering, and concluded that the staff at Albany Medical
Center had no idea on how to ease Joe’s pain. She asked staff to start him
on the pain medication he would receive at hospice, and his pain finally
subsided and he was able to relax.
Alves recalled that when she and Joe first started on this journey
together he had said he would do everything he could do to get better. He
asked her only one question. “He asked me what I would do if he could
not go on anymore. I told him I would let him go, and when the time
came, with much pain and deep sorrow, I did,” she said. The next morning,
December 18, while she was in the bathroom in Joe’s room, he passed
away quietly.
In recounting some of the many incidents that caused her husband to
endure needless pain and anguish, Alves said she hoped she was conveying
the message of how palliative care would have gone a long way to helping
ease his suffering and her grief at seeing it. “Fortunately, before Joe passed,
we were able to tell each other we knew we were the right partners for each
other. Joe told me I was the queen of his heart. He was the king of mine,”
said Alves. “I feel blessed that we were able to hold on to each other and
cherish the time we had left in spite of his terrible illness and the problems
we encountered, but it could have gone the other way because of things
that did and did not happen during Joe’s illness.” She added that the last
few days of a person’s life are important. “As badly as I still feel about Joe’s
passing, I would feel much worse if things had not been good between us
when he passed.”
After Joe died, Beverly asked friends if they would want to be told if
they had a serious or life-threatening illness. “Our friend, George, said it
best. He said he would want to be told. ‘You are very sick, but we are going
to do everything we can to help you,’” recalled Alves. She added that while
many medical professionals are bright and filled with essential medical
knowledge, they need to learn to speak to a patient and the patient’s family
and loved ones with compassion. “Patients are human beings with hopes,
dreams, fears, and sorrows,” said Alves. “They are not simply an accumulation
of cells, organs, and systems. To treat only a disease or an injury is to
be merely a body mechanic.”
She then offered some advice to the health care professionals at the
workshop. “When speaking with a patient, especially one who is critically
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
22 HEALTH LITERACY AND PALLIATIVE CARE
ill, pause, take a breath, think, listen, or pray,” said Alves. “Treat patients
and their family members the way you would want to be treated, the way
you would want your family members to be treated. Be a partner with
your patient in their healing. Studies show that people heal better when
they have a support system, so be part of that support system because even
if you cannot cure your patient, it will make all the difference in the time
they have left. Then you will truly be healers.”
COMMUNICATING PROGNOSIS2
Thomas Smith began his presentation by offering Alves an apology
for what she endured on behalf of all medical oncologists everywhere, and
offered hope that the next generation of oncologists would do better. He
acknowledged that he and his colleagues are not doing a good job about
communicating prognosis, but he also offered the possibility that there are
ways to do better, including listening to and learning from stories such as
the one Alves had just told.
He then provided two definitions as context for his talk. Literacy, he
said, is the ability to read and write, and readability can be measured using
indices such as the Simplified Measure of Gobbledygook (SMOG) or the
Rapid Estimate of Adult Literacy in Medicine (REALM) (Dumenci et al.,
2013). Most hospice brochures, he said, would score at a sixth grade or
higher level using these types of measures. Literacy, added Smith, is different
from health literacy, which is the degree to which an individual has
a capacity to obtain, communicate, process, and understand basic health
information and services to make appropriate health decisions. According
to 2003 statistics, some 98 million incidents of poor outcomes, additional
hospitalizations, lower compliance, higher mortality, and reduced use of
hospice resulted from health illiteracy. Factors contributing to health illiteracy
include race, age, education level, poor vision, and comorbidities
(Matsuyama et al., 2011). Given that medical care is more complex than
in 2003, Smith said that this number is likely to be higher today, though
he and his colleague Robin Matsuyama have been unable to find updated
statistics.
The benefits of health literate palliative care are plentiful, said Smith.
Ten randomized clinical trials of palliative care added to usual care, versus
usual care alone, among patients with a variety of serious illnesses, for
example, found no harm in any trial. There was a compelling increase
in better satisfaction and communication with providers, less depression
2 This section is based on the presentation by Thomas Smith, Director of Palliative Care for
Johns Hopkins Medicine and the Hopkins’ Sidney Kimmel Comprehensive Cancer Center, and
the statements are not endorsed or verified by the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 23
and anxiety with more prognostic awareness, and an increase in hospice
referrals (Parikh et al., 2013). In most cases, quality of life and symptom
control were better and costs were lower by at least $300 per day. Four
of the then trials showed that even with increased prognostic awareness,
patients lived longer.
A 2010 study (Temel et al., 2010) in particular got everybody’s attention,
Smith noted. This trial randomized usual care versus usual care plus
one palliative care visit per month for 151 newly diagnosed non-small-cell
lung cancer patients. This study found that the patients assigned to early
palliative
care not only had a better quality of life than did patients who
only received standard care, but they survived almost 3 months longer
(Greer et al., 2012) with less aggressive care at the end of life (Roeland et
al., 2013). Though prognostic awareness increased in patients receiving
palliative care (see Figure 3-1), those patients experienced less depression
and anxiety and had better mood (see Figure 3-2). Early palliative care
also increased documented resuscitation preference, increased the number
of patients who received hospice care 7 days or longer before death, and
nearly tripled the number of days spent in hospice (Greer et al., 2012).
“Show me another branch of medicine that improves quality of care,
Percent
Remained
Accurate
Became
Accurate
Remained
Inaccurate
Became
Inaccurate
10
0
20
40
30
60
50
70
Standard Care
Early Palliative
Care
FIGURE 3-1 Improvement in prognostic awareness among patients receiving palliative
care.
SOURCE: Temel et al., 2011.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
24 HEALTH LITERACY AND PALLIATIVE CARE
improves the quality of lived experience for people, and lowers cost,” said
Smith.
To explain the success of palliative care, he and colleague Betty Ferrell
from the City of Hope developed the acronym TAME—time, assessment,
management, and education. The time required, he explained, is about
1 hour per month. There have to be formal assessments for symptoms,
spirituality, and psychosocial factors. There needs to be management protocols
in place and educational tools to help patients and families learn about
prognosis, coping skills, advanced directives, hospice, and legacy. Though
not complicated, said Smith, these have to be scripted to get the best results.
Smith said he was not surprised that palliative care increased time of
survival given a study he conducted showing that better pain management
increased survival time in cancer patients by more than 3 months (Smith
et al., 2002, 2005). More recent studies have found similar results with
regard to increased survival times associated with palliative care for cancer
patients (Bakitas et al., 2015), and a study involving patients with dyspnea
who received integrated palliative care and respiratory care compared to
the usual respiratory care found that palliative care reduced the chances
Patients with Mood Symptoms (%)
50
40
30
10
20
0
HADS-D HADS-A PHQ-9
Standard care Early palliative care
FIGURE 3-2 Palliative care allows cancer patients to experience less depression
and anxiety.
NOTE: HADS-A = Hospital Anxiety and Depression Scale-Anxiety; HADS-D = Hospital
Anxiety and Depression Scale-Depression; PHQ-9 = Patient Health Questionnaire.
SOURCE: Temel et al., 2010.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 25
of dying at 6 months by 30 percent (Higginson et al., 2014). “If this was
a drug, we would be at the FDA [U.S. Food and Drug Administration]
demanding its approval,” said Smith.
Despite results such as these, communication today between doctor and
patient is not satisfactory, said Smith. One study found, for example, that
only 17 percent of lung cancer patients could guess that their prognosis
with stage IV disease was less than 2 years (Liu et al., 2014), while another
study found that 69 percent of patients with stage IV lung cancer and
81 percent of stage IV colon cancer did not understand that chemotherapy
was unlikely to cure their cancer (Weeks et al., 2012). Whether a patient
responded accurately to questions about the likelihood of chemotherapy
curing their cancer was not associated with race or ethnic group, education,
functional state, or a patient’s role, but it was associated with being in an
integrated care network and with lower scores for physician communication.
“If your physician was blunter with you, you understood better,” said
Smith. These observations, he added, contrast sharply with data showing
that 80 percent of patients want to know the full truth about their diagnosis
even though it may be uncomfortable or unpleasant (IOM, 2013). He
noted, too, that oncologists such as himself almost always tell their patients
that their disease is incurable, but then in collusion with their patients, they
quickly transition the discussion to one of treatment options and schedules,
leading to false optimism. The subject of prognosis never comes up again
for most patients, he said.
The same data set showed that the chances of having inaccurate
prognostic awareness increased in Latinos, African Americans, and Asian
Americans. Smith said he did not know if this disparity resulted from who
the patients were, who was or was not presenting the information, what
the patients are hearing, how they are being told, or some combination
of these factors. Another study, with similar results, found that patients
overestimated the likelihood of cure after surgical resection of lung and
colorectal cancer (Kim et al., 2015). Women and unmarried individuals
were slightly less likely to have inaccurate prognostic awareness, but
African
Americans and Asian Americans were more likely to believe surgery
would be curative.
Smith briefly discussed a study showing that video presentations about
end-of-life decisions are more effective than just talking to patients at influencing
the patient’s perceptions and decisions (Volandes et al., 2008). This
finding was consistent regardless of race and literacy level, and regardless
of educational level. He noted that African American physicians were far
more likely than their Caucasian colleagues to want to be resuscitated, be
on a ventilator, or have artificial feeding, while Caucasian physicians were
more likely to want physician-assisted suicide (Mebane et al., 1999). However,
when asked if tube feeing in terminally ill patients is heroic, 28 perCopyright
© National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
26 HEALTH LITERACY AND PALLIATIVE CARE
cent of African American physicians replied yes compared to 58 percent of
Caucasian
physicians.
Smith noted that the Internet is not a good source of information on
prognosis either (Chik and Smith, 2015). He and a colleague checked the
American Cancer Society’s website, the National Cancer Institute’s (NCI’s)
Cancer.gov, uptodate.com, and at least one disease-specific website looking
for information about prognosis for stage IV cancer. Only 26 out of 50
websites had some notation of 5-year survival, and only four websites gave
any information about what the average person could expect in terms of
median survival. Only 13 websites noted that stage IV cancer was a serious
and usually life-ending illness. On a positive note, nearly all had some
information about hospice and palliative care, though none gave specific
recommendations.
Most hospice and palliative care information, even from nationally
prominent palliative care organizations, is written above the recommended
sixth grade level and is not readable (Ache and Wallace, 2009; Brown et
al., 1993), said Smith. About one-third of these materials require universitylevel
literacy skills for full patient comprehension. “End-of-life patient education
materials should be revised for average adult comprehension to help
informed decision making and to aid in closing the gap in health literacy,”
said Smith. Studies have shown, in fact, that better communication about
prognosis changes the process of care. For example, a question prompt list
has been shown to increase the number of questions people have about endof-
life and prognostic issues (Clayton et al., 2007), and Smith noted that he
and his colleagues are creating a question prompt app. Video decision aids
also help patients make better choices about end-of-life care (El-Jawahri et
al., 2010; Volandes et al., 2013), and electronic prompts given to physicians
have been shown to increase the number of people who express their
preferences for life-prolonging interventions and resuscitations (Temel et
al., 2013). Teaching patients about standards of care will even change the
median time to a DNR order from 12 days to 27 and reduce the hospital
death rate from 50 percent to 19 percent (Stein et al., 2013), Smith noted.
He and his colleagues have created decision aids to help patients make
better end-of-life decisions. One such aid was developed for the American
Society of Clinical Oncology for use with patients with stage IV lung cancer
(Smith et al., 2011). It presents answers in response to common questions
such as, “What is my chance of being alive at 1 year?” and “What is the
chance of my cancer shrinking by half?” (see Figure 3-3). The decision aid
also answers questions such as, “Are there other issues that I should address
at this time?” that provides information on resuscitation, family and spiritual
issues, financial matters, and hospice. “The interesting thing about
this aid is that it does not take away hope,” said Smith, who noted that
measurements taken before and after patients used the aid showed that if
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 27
0% 20% 40% 60% 80% 100%
Chance of cancer shrinking by half
Cancer
shrinks by
50%
Cancer does
not shrink by
50%
FIGURE 3-3 Decision aid to answer the question, “What is my chance of this
cancer shrinking by half?” for patients receiving third-line therapy for stage IV
lung cancer.
SOURCE: Presented by Thomas J. Smith on July 9, 2015.
anything, the level of hope increased slightly (Smith et al., 2010). He added
that the California Healthcare Foundation plans to release truthful decision
aids for the 10 leading causes of cancer deaths in late 2015.
The ultimate goal, said Smith, is to change office practice so patients
who could benefit from palliative care are identified at the time of diagnosis
rather than at the end of life (see Figure 3-4). “We want physicians to
bring up palliative care when the cancer starts to grow, when heart failure
starts to get a little worse, when diabetes starts to cause more vascular
complications.”
Smith is now working with all of the providers at Johns Hopkins Medicine
to provide a research-based palliative care communication tattoo that
would go on the forearm of every patient with a serious illness (Morris et
al., 2012). The tattoo will list the following questions that patients should
be asking themselves and their physicians (see Figure 3-5).
Smith concluded his talk by reiterating that 80 percent of patients want
to know and understand their prognosis and that acting on that information
makes a big difference in the care they receive and the quality of life
they lead. He noted that some patients, for example, turn down secondline
lung cancer chemotherapy because they do not think it works when
in fact it does improve survival and it does improve quality of life. “Those
are good things to know, and if you can understand it, maybe you can
choose better,” said Smith, who said he is not about denying people care.
What he does want is for more patients to get helpful chemotherapy and
fewer patients to get unhelpful chemotherapy, for there to be greater use of
hospice, less patient and family distress, longer survival, and for patients to
die at the place of their choosing. Smith added there needs to be rewards
for doing this tough work, better decision aids for patients, and prompts
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
28 HEALTH LITERACY AND PALLIATIVE CARE
Curative Care
Palliative Care
Disease Course
Clinical
Effort Bereavement
Diagnosis Death
Set trigger points for
PC referral: life
ending illness, any
effusion, pain >8,
neuropathic pain
Hospice
Informaon Visit:
3-6 month expected
survival, not 3 days
Hospice Acvaon:
30 days before
death
Appoint someone in the
office to have
discussions about
advance direcves,
power of medical
aorney, hospice
informaon visit, use of
hospice as best pracce
Progressive Disease:
Trigger points for
rediscussion: prognosis,
goals of treatment,
planning for the future,
not just curable/not
curable
Let hospice do
bereavement: survival
of remaining spouses is
higher and there is
much less caregiver
distress
FIGURE 3-5 Temporary tattoo listing important questions for patients and providers.
SOURCE: Presented by Thomas J. Smith on July 9, 2015.
FIGURE 3-4 Modifying practice patterns to improve patient outcomes.
NOTE: PC = palliative care.
SOURCE: Wittenberg-Lyles et al., 2015.
1. What is your understanding of your
situation?
2. How do you like to get medical
information?
3. What is important to you?
4. What are you hoping for?
5. Have you thought about a time when
you could be sicker…Living Will or
advance directive?
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 29
that remind physicians to have these discussions, such as the smartphone
app that he and colleagues are developing with funds from the National
Coalition for Cancer Survivorship. Physicians, he said, need better communication
skills, though in the end, it may be important to have a member of
the palliative care service handle this important task. “I don’t think many
oncologists are wired this way,” said Smith.
SERIOUS ILLNESS COMMUNICATION PROGRAM3
The topic of palliative care and health literacy is compelling to Justin
Sanders not only because of the work he does in this area but because the
field continues to grapple with trying to improve comprehension of what
palliative care means and who it benefits. He also said that he agrees with
the sentiment that this is a health literacy issue that is as acute for physicians
and other members of the health care team as it is for patients.
Just as Smith did at the beginning of his presentation, Sanders started
with some definitions to set the boundaries for the concepts he would be
addressing. He characterized his definition as expansive and is based on
the Institute of Medicine (IOM) report Health Literacy: A Prescription to
End Confusion (IOM, 2004), which defined health literacy as the degree
to which individuals have the capacity to obtain, process, and understand
basic health information and services needed to make appropriate health
decisions. That report went on to describe health literacy as an emergent
phenomena that occurs when expectations, preferences, and skills of
individuals seeking health information meet the expectations, preferences,
and skills of those providing information and services. In other words,
said Sanders, health literacy is not something individuals possess, but it is
something that emerges from the interaction between clinician and patient.
Health literacy is also sensitive to the demand it places on a person to
decode, interpret, and assimilate health messages, and as a result it is
dynamic and situation dependent.
In terms of palliative care, Sanders said he would be referring to a set
of services concerned with patients in all phases of serious illness, which
is to say an illness that places a person at high risk of incapacity or dying
within a certain time frame. He agreed with the previous speakers who said
it is a health literacy problem that has physicians continuing to believe that
palliative care only has a role at the end of life.
3 This section is based on the presentation by Justin Sanders, Research Fellow with the Serious
Illness Care Program at Ariadne Labs, Instructor in Medicine at Harvard Medical School,
and an attending physician in the Psychosocial Oncology and Palliative Care Department at
the Dana-Farber Cancer Institute and the Brigham and Women’s Hospital. The statements are
not endorsed or verified by the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
30 HEALTH LITERACY AND PALLIATIVE CARE
The Serious Illness Care Program at Ariadne Labs, he then explained,
developed a systematic and systems-level approach to address two fundamental
gaps in the care of seriously ill patients and their families. The first
is the gap between what patients want for care and what they receive in the
setting of serious illness. “Most Americans, including those of all colors and
creeds, wish to spend their final days at home and want less aggressive
and more symptom-focused care, especially when they are aware of a terminal
diagnosis,” said Sanders. “They do not want their dying prolonged,
they do want a sense of control, and they do not want to burden their
family and friends.” What most patients get looks somewhat different, he
said. Most Americans die in institutions, and aggressive care with little or
no benefit is common. Hospice use is increasing, but the length of stay in
hospice has been falling (NHPCO, 2014), and transitions in the last 3 days
of life are on the rise (Teno et al., 2013). Among the consequences of this
gap, said Sanders, are inadequate symptom control and poor quality of life
for patients and their caregivers.
The program also addresses the gap between what is known about
how to provide high-quality end-of-life care and what the health care enterprise
delivers. More specifically, said Sanders, it is well documented that
discussions to clarify goals, values, and priorities for care—advance care
planning discussions—improve clinical outcomes as measured by more goal-concordant
care, less aggressive care, more and earlier hospice care, and
higher patient satisfaction and family well-being (Brinkman-Stoppelenburg
et al., 2014) without making patients more anxious, depressed, or lose hope.
“Early conversations about goals and priorities enhance a patient’s sense of
control, providing space for planning and closure and focusing patients and
families on what matters most,” said Sanders.
At the same time, he added, there is a connection between physician
burnout, poor self-efficacy, and caring for patients with serious illness
(Meier et al., 2001), yet clinicians feel closer to patients and better about
the care they provide when they speak earlier and often with the seriously
ill patients about their goals and priorities. What happens in most health
care settings, however, is that these conversations occur too infrequently or
too late in the course of disease progression, particularly in communities
that suffer disproportionately from low health literacy. In addition, added
Sanders, clinicians are not that good at having these conversations.
The Serious Illness Program addresses these gaps with a process involving
the following steps:
• Identify seriously ill patients.
• Train clinicians in the use of a structured conversation guide.
• Prepare patients to participate in these conversations.
• Prompt the clinician to have the discussion.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 31
• Have the discussion.
• Document the discussion in a single, easily locatable place in the
electronic medical record (EMR).
• Provide materials to the patient to carry on the conversation with
their family members.
The heart of the process, Sanders explained, is the Serious Illness
Conversation Guide, which prompts the clinician to ask the patient two
questions: (1) What is your understanding of where you are now with your
illness? and (2) How much information about what is likely ahead for you
would you like from me? At that point, the guide encourages the clinician
to share the prognosis and then pose five additional questions:
• If your health situation worsens, what are your most important
goals?
• What are your biggest fears and worries about the future with your
health?
• What abilities are so critical to your life that you cannot imagine
living without them?
• If you become sicker, how much would you be willing to go through
for the possibility of gaining more time?
• How much does your family know about your priorities and wishes?
Sanders then discussed the Physician Orders for Life Sustaining Treatment
(POLST) paradigm that he believes is less likely to open this space in
a sustainable manner. POLST and similar paradigms are physician orders
for life-sustaining treatment, and all but five states have some version of the
POLST form in place. Sanders considers it problematic for several reasons,
the first of which is that the POLST paradigm was created without clear
thinking about how to train clinicians to have these discussions. “It seems
as if the goal is to force the discussion using a tool to clarify procedural
options for care, which puts the cart before the horse,” said Sanders. The
horse, in this case, would be the goals and priorities that inform people’s
ideas about what kind of care they want.
Continuing with this analogy, Sanders said the cart had its own problems,
namely that advance directives are a contested strategy for delivering
goal-concordant care in that they do not always guarantee that patient
wishes are followed (Hickman et al., 2015; Mirarchi et al., 2015). In some
cases, a family member may reverse a patient’s wishes, while patients themselves
can change their minds in response to serious illness in ways that a
POLST form may not reflect, explained Sanders. In addition, the interventions
listed on the POLST form are often poorly understood by patients
or family members who may not know the effect of the listed treatments,
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
32 HEALTH LITERACY AND PALLIATIVE CARE
their risks, and their benefits. “Even if they did know of these treatments,
how do we know that the way we are explaining them facilitates the kind
of comprehension that leaves people feeling confident in their decisions,”
said Sanders. “That is a health literacy issue.”
Thinking about health literacy as an emergent phenomena, one that
emerges in a way that affects behaviors of both patient and physician,
requires being acutely sensitive to the power dynamics that exist between
two parties with different cultural, social, and educational backgrounds and
how that dynamic affects the space in which discussions about palliative
take place (see Figure 3-6). The biggest power dynamic, said Sanders, is the
one between a patient with serious illness and the clinician, insurer, or health
system with the capacity to cure or hold at bay the patient’s disease. “We
have to think about what it means when this treating clinician either allows
the possibility for treatment goals to change or refers to a clinician with that
Preferences
Skills
Provider
Patient
Culture
What
is
said?
How
it’s
said?
Culture What
illness
?
What
is
heard
?
What
Relationship?
Health Literacy
Expectations
Preferences
Skills
Expectations
FIGURE 3-6 Many factors play a role in the power differentials that affect health
literacy.
SOURCE: Presented by Justin Sanders on July 9, 2015.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 33
power,” said Sanders. Factors that widen that gap and that are relevant to
health literacy include education, socioeconomic position, and race.
Assuming that power differentials are evident in the process of advance
care planning, one strategy for creating safe space is to give control to the
patient. The approach that Sanders and his colleagues use is to prepare
patients to have this discussion by asking their permission to have it and
then assessing and honoring their information preferences. They do this by
asking questions in ways that allow the patient’s humanity, not the illness,
to come through in a manner that actively shapes the care. “A conversation
focused on the POLST form does none of that intentionally and risks
exacerbating the inherent tension in the relationship by focusing on lifesustaining
procedures and not to the issues of survival, suffering, quality of
life, and meaning that are most important to patients and families,” said
Sanders. “In the POLST paradigm, we are forcing the patient and family
onto our turf, into the medical model, and failing to honor the patient’s
experience and perspective.”
The problem of obtaining goal-concordant care is particularly acute for
African Americans, said Sanders, in part because of structural and interpersonal
factors but also from the fact that African Americans compared
to Caucasians engage in advance care planning less often (Daaleman et
al., 2008). The latter stems from multiple factors that include mistrust in
both clinicians and the health care system, decision making informed by
religious principles, family decision-making styles, and health literacy (Nath
et al., 2008). Sanders said that it is hard to know the full impact of health
literacy on advance care planning (Melhado and Bushy, 2011), in part
because health literacy as measured in studies that have examined its role
in advance care planning is somewhat unidimensional, typically by using
measures such as grade reading level. “But if we think of health literacy
as emerging from both the patients’ experiences and their interaction with
clinicians, then health literacy might be the central issue relating to achieving
goal-concordant care,” said Sanders.
The key challenge he and his colleagues face is to think about how
an intervention developed in a place that serves a predominantly white,
middle- and upper-middle-class-population can affect other important U.S.
populations, especially African Americans. “How do we move it out of
a temple of science and into a temple of worship,” said Sanders. Their
approach, he explained, has been to conduct a series of focus groups aimed
at identifying high-risk barriers to participation in conversations such as
these, gaining feedback about the language and content of the Ariadne
Labs Serious Illness Conversation Guide, and then modifying the guide
so it can be implemented in a culturally sensitive manner. He emphasized
that they are not creating a guide specifically for African Americans, but
rather they are thinking about how to give guidance to clinicians about
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
34 HEALTH LITERACY AND PALLIATIVE CARE
language and issues that will enable them to better create the safe place for
discussing end-of-life issues. “If these modifications are useful to African
Americans, they may be useful to others as well,” said Sanders, who added
that the process of identifying these modifications is one they can repeat
with other populations.
He and colleagues have learned a number of important lessons through
this process. For the most part, he said, the space in which goals of care
are discussed with African Americans with serious illness is in the hospital
during a crisis. These interactions are emotionally traumatic for families
and add to a collective historical trauma felt acutely by members of the
African American community, heightening senses of stigma and mistrust.
In addition, the relationship between the patient and family and members
of the clinical team, and in particular the physician, is paramount to the
sense of safety for patients and families in approaching the end of life.
As far as the guide itself, the questions have been easily understood and
acceptable to the African American participants in the focus group. Moreover,
the questions enhanced the participants’ sense of feeling cared for,
while the addition of the question “What gives you strength and comfort
as you think about the future with your illness?” effectively elicits and
allows for religious faith to enter the conversation in a way that enhances
this sense of caring.
In conclusion, Sanders said that it is more useful to think of health
literacy as an emergent phenomenon rather than as something that is or is
not possessed by an individual. He added that for health literacy to emerge
in a way that supports advance care planning and palliative care, the focus
needs to move away from advance directives to scalable, translatable communication
practices that help patients and clinicians enter a space together
without fear of ineptitude on the part of clinicians or abandonment on the
part of patients.
DISCUSSION
Diane Meier started the discussion by asking Alves for her reaction
to the two presentations. In Alves’s opinion, there needs to be a campaign to
educate both the public and medical community about the availability and
importance of palliative care, noting that she had essentially been providing
palliative care for her husband even though she was a special education
teacher. Shortly after Joe passed, she wrote a letter to Albany Medical
Center describing what she had been doing for her husband. A friend of
hers, who was the head of rehabilitation services at a local facility, read
the letter and told Alves that she had been providing palliative care. Alves
replied to her friend, “What is that?” She added that she thinks the medical
community is moving in the right direction.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 35
Meier then noted how both Smith and Sanders had emphasized the
importance of communication about what to expect and the need to give
power to patients and family members to guide the actions of the health
care team. She repeated Sanders comments about the failure of the turnkey
approach to advance care planning and asked Smith and Sanders to
speak about the lack of fit between patient and family needs and standard
approaches to end-of-life care. Smith said he takes a practical, handson
approach that starts with knowing what he needs to do if a person’s
body starts dying well before that happens. He said that while he appreciates
the cart-before-the-horse analogy, he also knows how difficult these
questions are for a health care provider such as himself to ask a patient.
For example, when he asks patients if they want dialysis, he first has to
spend time talking about what dialysis is and what it entails. The same is
true for ventilation.
What is important to consider, too, is that the culture of the institution
factors into how these questions are asked. He noted that one of his postdoctoral
fellows studied how DNR decisions were made at three institutions
in the United States and one in the United Kingdom (Dzeng et al., 2015). At
the UK hospital, the physician makes the decision and informs the patient,
which Smith called the paternalistic model of care. At the University of
Washington in Seattle, that decision is a shared one made in partnership
with the patient. There, the physicians ask patients about their desires, the
quality-of-life issues they find important, and their understanding of their
situation. The physicians explain what it means to be on a ventilator and
the odds that resuscitation will enable patients to survive. In his experience,
the chances of resuscitation being successful is close to zero, and he believes
patients have a right to know that to help them make better decisions.
Smith also noted a recent paper showing that the number of people
making durable power of attorney assignments increased from 52 percent
in 2000 to 74 percent in 2012, but that there was no change in the use of
living wills (Narang et al., 2015) despite the fact that the only thing that
makes a difference in end-of-life care is having a written living will or written
advance directive. “Just having an appointed person makes absolutely
no difference,” said Smith, who added that he is tired of hearing his colleagues
say that all they need to know is who the decision maker is. That
is just a start, said Smith, but it means nothing unless the patient and decision
maker have actually discussed what the patient wants. On a practical
note, he agreed that the POLST form is often little more than an exercise
in checking boxes, but that it does force there to be some discussion about
end-of-life decisions. “I don’t think that is a bad idea,” said Smith.
Sanders agreed with Smith about the importance of the patient and
appointed decision maker having a real discussion about the patient’s
wishes given the work that he and his colleagues have done showing
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
36 HEALTH LITERACY AND PALLIATIVE CARE
that end-of-life care is determined more by family members than written
advance directives. He then noted that he and his colleagues have seen in
their studies that a good discussion between clinicians and patients can
be psychologically beneficial and enable patients to go home and have
fruitful discussions with their families. “We often hear . . . in talking with
the patients about how they walk away from the conversation with their
physician and have a better sense about how to talk to their families about
end-of-life issues,” said Sanders. He has also found through his experience
in training hundreds of clinicians that when they do not ask about procedures,
the procedures stop being the focus of conversation, leaving room
for the clinicians to better understand their patient’s most important values.
That, in turn, allows the clinicians to use their training and make recommendations
to patients that fit the patients’ needs and that leave patients
feeling cared for in that setting. He added that when health literacy issues
are acute and patients are forced to make concrete care decisions to check
boxes on a form, they feel lost.
Linda Harris from the Office of Disease Prevention and Health Promotion
at the U.S. Department of Health and Human Services commented that
Sanders’s framing of health literacy as an emergent phenomenon has the
potential to be powerful, but it also has the potential of challenging health
care providers to take some responsibility for improving the health literacy
of their patients. Given that possibility, she asked Sanders if he had any
evidence that health literacy is an emergent rather than a personal characteristic.
Sanders responded that this notion came from the IOM report and
that his experience supports that idea. “People with poor health literacy
know everything they need to know about their goals and values,” he said,
adding that what they do not know is how to translate that self-knowledge
into understanding the details of clinical care given that clinicians can have
a difficult time talking about these issues in ways that make sense to their
patients. He recounted how a patient he had spoken to the day before the
workshop said that the questions in the guide were good because they
forced the doctor to speak like a human rather than a doctor and to truly
understand what the doctor was saying. “That is why I think that health
literacy is an emergent phenomenon, one that emerges from our interactions
with patients as humans,” said Sanders. Harris agreed that was a
reasonable view and asked Sanders how the conversation guide takes that
idea into account. Sanders said that a major component of the conversation
guide is a set of nonthreatening questions designed to create the safe space
need to have a thoughtful and thorough discussion. Clinicians, for example,
are encouraged to tell their patients that no decision has to be made on the
basis of a single conversation.
Wilma Alvarado-Little, founder of Alvarado-Little Consulting, noted
how Smith had mentioned that some ethnic groups had less prognostic
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 37
awareness than others and that Sanders had touched on some issues regarding
African American communities. She then asked the panelists if there
were any considerations being made for groups of patients and family
members whose primary language is not English and for the deaf and hardof-
hearing communities. Before answering the question, Smith recounted
a recent call his team received from a patient with liver failure who knew
she was very sick and wanted to know how much time she had. The nurse
practitioner did a wonderful job talking to the patient about her prognosis
and that there was no way to say with certainty how much time she had to
live, but after Smith returned to his office he received a frantic call from a
staff member who said the family claims the patient does not want to know
her prognosis and not to tell her. “What we have learned to do with every
culture is to ask patients about their understanding of their situation, and
how do they like to get medical information,” said Smith.
He then said that his team has projects in Belize, Saudi Arabia, and
Tajikistan, three places with three very different cultures. In Tajikistan, for
example, he has seen a surgeon who has just operated on someone with
inoperable gastric cancer tell the patient he has an ulcer, to take certain
drugs, that he would be okay and then go tell the family that he has weeks to
live. Again, he had learned to ask patients about their understanding of their
situation and how they want to get their medical information. “Giving people
those couple of simple tools is important. Having a script to start these
conversations is really key,” said Smith. He also noted that in Baltimore,
where he has now worked for 3.5 years, he has been accused of experimenting
on people’s loved ones more in that time than in 28 years of practicing in
Richmond. “You just have to ask, ‘How do you like to get medical information?
What is your understanding of your situation?’” he said. “Never make
assumptions about what people want to know.”
Margaret Loveland, a pulmonologist from Merck & Co., Inc., who has
treated patients with end-stage chronic obstructive pulmonary disease and
diagnosed many lung cancers, commented on the lack of continuity of care
that was apparent in the way Joe Alves was treated. She noted that when
she diagnosed a patient with lung cancer and referred him or her for radiotherapy
of chemotherapy, she always took the time to follow up with and
ask the questions Smith gave. She felt that patients will only answer those
questions and talk to someone about these issues if they know the person.
“With all of these other people coming and going, can you really have a
deep conversation with somebody you don’t know?” asked Loveland. Alves
said that in her husband’s case, the system did not work at all. “Each doctor
that we went to just dropped the ball. There was no coordination of care at
Albany Med,” she said. She did commend a physician from the University
of Indiana who did try to find an oncologist in upstate New York and who
took the time to review her husband’s test results.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
38 HEALTH LITERACY AND PALLIATIVE CARE
Smith then commented that it does not have to be the oncologist or
the cardiologist who has these conversations, but it needs to be somebody
the patient trusts. “If your primary care physician stays involved, you are
twice as likely to get the care you want,” said Smith, citing a study done in
Canada (Sisler et al., 2004). He would like to see primary care physicians
kept in the loop and receive functional status updates as a mandatory part
of care, noting that he can teach anybody in 5 minutes how to write a onepage
summary to all care team members in the EMR.
He then told of a study (Dow et al., 2010) in which 75 consecutive
patients coming into an inpatient oncology service with an average survival
of 3 months were interviewed, and found that only 40 percent of these individuals
had advance directives; the percentage was slightly lower in African
Americans and slightly higher in Caucasian. However, the oncologists were
only aware that 5 of the 75 patients had advance directives and only twice
did the oncologists even mention advance directives. The study team asked
the question, “When you are being admitted to the hospital, do you think
it is important to have a discussion about advanced directives?” and 90
percent of these patients said yes. They then asked, “Are you comfortable
discussing this with the team that is admitting you to the hospital that you
have never met before?” and again 90 percent said yes. But when they asked
the question of “Would you like to discuss this with your oncologist?” only
23 percent said yes. It turns out, he said, that for some patients and families
it is easier to discuss what is going to happen to them with the referring
physician than it is with the oncologist.
The lesson here, said Smith, is that somebody has to ask the two questions.
It does not have to be the oncologist, but somebody needs to do it.
As an example, he cited Texas Oncology, where more 80 percent of the
patients have advance care planning discussions and close to 90 percent of
lung cancer patients go into hospice for up to 2 months. To achieve those
laudable results, Texas Oncology has made it a best practice for someone
on the health care team to discuss advance care practice on a patient’s first
three visits, with financial penalties for not meeting that standard. Today,
US Oncology, of which Texas Oncology is an affiliate, is doing this on a
regular basis in all of its practices, and Smith said US Oncology could provide
the tools immediately to make this practice universal. Sanders added
that these tools are available universally. He also noted that he expects that
a large randomized controlled trial at Dana-Farber Cancer Institute involving
all of its oncologists is going to show that these oncologists feel better
about their job as doctors when they are able to have these conversations
with their patients.
Sanders then said his team has interviewed African Americans in the
southern United States about who they think would be the best person
with which to have these conversations, and the results were mixed. The
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTERPERSONAL COMMUNICATION 39
clinicians they interviewed felt strongly that the patient’s primary care doctor
would be best, while the patients thought it would be the specialist.
He added that at Dana-Farber the care team is in many ways the primary
medical home for their patients. “I think whoever has the ability to have
this conversation well and feels most comfortable doing it should be the one
to do it,” said Sanders. Meier disagreed with this idea and cited the case of
Jenny C.’s doctor who was offering her futile treatment because he cared
so much about her. “It would not have helped to have someone else have
this discussion,” said Meier. “They will keep doing what they were trained
to do because it is emotional, and it is about the relationship. It is not an
easy out to just assign that job to someone else.”
Ruth Parker from Emory University School of Medicine commented
that she was placing her hopes for improvement on Sanders and his generation
of physicians who can now use all of the health literacy tools that her
generation of researchers has developed. She then asked specifically about
the role that cost transparency and people’s ability to understand the cost
of care factor into decision making with regard to end-of-life care, noting
that the leading cause of personal bankruptcy is medical debt. Smith replied
that there are no studies looking at how people of varying levels of literacy
and health literacy understand their actual cost of treatment, and there has
only been one study, which he and his team published recently (Kelly et
al., 2015), in which patients were given information about how much their
treatment would cost. This study found that 93 percent of patients want to
know up front what the cost of care would be—the other 7 percent were
too ill to answer the question—and that having this 2-minute conversation
with their oncologist did not destroy the physician–patient relationship.
Smith’s personal experience with patients of varying literacy, health
literacy, and cultural backgrounds shows it is possible to make this information
understandable. The challenge, he said, has been getting this
information from his institution. “You are going to have to search at your
own institution and find out what the costs are, and then you are going to
have to put it in an easy-to-understand, graphical form,” said Smith. He
noted that the 2013 IOM report Delivering High-Quality Cancer Care:
Charting a New Course for a System in Crisis called for every health care
system to be transparent about costs, but that his institution refuses to
do so. When a workshop participant stated that institutions do not know
what the cost of care is, Smith disagreed, and said that since November
2013 US Oncology has told every patient what the plan of treatment will
cost and makes financial counselors available to help patients determine
if they can afford that treatment. “That is proof positive to me that we
can do this no matter who you are,” said Smith.
In Sanders’s opinion, talking about the cost of care is complex and
raises health numeracy issues. He also wondered if physicians, who as a
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
40 HEALTH LITERACY AND PALLIATIVE CARE
group of people have huge student loan debt, are best equipped to talk
about the cost of care in relation to benefit, and if it is even that important
to talk about the cost of care with patients. “I think the changes of
care that reduce cost when we elicit goals and values are patient driven,
not system driven,” said Sanders. “I think that is the most important kind
of cost savings.” Smith disagreed, saying that with some third-line cancer
therapies costing $150,000 per month, and the average response time being
3–4 months, patients are going to want to know what their copays will be
and what the benefit of that therapy will be. “That is very different than
talking about a curative therapy for Hodgkin’s disease,” said Smith. “We
are going to have to have these cost discussions right up front with people,
no ifs, ands, or buts about it.”
In wrapping up this session, Bernard Rosof said that what he heard
from speakers so far was that every member of the health care team should
be trained to ask patients about what is most important to them, not only in
palliative care situations but in every setting. He also heard that physicians
do not want patients to think they are abandoning them and that trust and
competency are core issues. Care needs to be coordinated and both patientand
family-centered. “I think these are transcending, crosscutting issues
that are important not just in palliative care but in the delivery of care to
patients in general,” said Rosof. While it is possible to couch these issues in
terms of systems and cultures, the bottom line is that they have to do with
organizational professionalism and the way health care systems treat every
patient as well as with every aspect of the physician–patient relationship.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
41
The workshop’s second panel featured two presentations on the need
to train health care professionals to have health literate discussions
about palliative care. Robert Arnold, Chief of the Section of
Palliative
Care and Medical Ethics, Director of the Institute for Doctor–
Patient Communication, and Medical Director of the Palliative and Supportive
Institute at the University of Pittsburgh Medical Center (UPMC),
spoke about methods for improving doctor–patient communication about
palliative care. Elaine Wittenberg, Associate Professor in the Division of
Nursing Research and Education at City of Hope Comprehensive Cancer
Center, discussed training programs for nurses. An open discussion was
moderated by Renee McLeod-Sordjan, a nurse practitioner and Medical
Ethics Attending for the Department of Medicine at North Shore–Long
Island Jewish Health System and Clinical Assistant Professor in the Graduate
Department at Lienhard School of Nursing.
TEACHING COMMUNICATION SKILLS TO CLINICIANS1
After remarking how angry he was about the state of the American
health care system after listening to the last panel presentations, Robert
1 This section is based on the presentation by Robert Arnold, Chief of the Section of
Palliative
Care and Medical Ethics, Director of the Institute for Doctor–Patient Communication,
and Medical Director of the Palliative and Supportive Institute at the University of
Pittsburgh Medical Center, and the statements are not endorsed or verified by the National
Academies of Sciences, Engineering, and Medicine.
4
Professional Training
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
42 HEALTH LITERACY AND PALLIATIVE CARE
Arnold wondered why there was a need for the term palliative care when
the concepts embodied by palliative should be the norm in all health care.
“I think we diminish what the health care system should do by calling it
palliative care,” said Arnold. “We ought to just call it good health care.”
He also remarked that getting American health care to embrace palliative
care seems to him to be a culture change problem and not really about any
one system, and that this culture change is just not happening. He recalled
reading a book (Mishler, 1985) when he was studying medical ethics that
talked about a world of medicine and a world of patients and that the two
never talked to one another, and realized after hearing Thomas Smith’s
presentation that nothing has changed. “The story that we tell in medicine
is that it is all the family’s fault,” said Arnold.
He then commented on the book Knocking on Heaven’s Door: The
Path to a Better Way of Death (Butler, 2013), whose author, like Arnold,
no longer sees doctors as healers but as skilled technicians with their own
agendas. Patients such as the book’s author have gotten smarter, he said,
in that they believe in science but do not have the same view about their
doctors because their doctors do not seem to care about what their patients’
lives are like. He told of conversations he has with the house staff at his
hospital who have no idea of what is going to happen after they send a
terminally ill patient home or to a nursing home and have done nothing to
prepare the family for what might happen and how to respond. The cause
of this seeming indifference, said Arnold, is that the culture of medicine has
split into little tribes, none of which know the patient.
One of the things that angers Arnold is that experts still debate which
medical professional should talk to patients and families about advance
directives when 70 percent of the time nobody does it. The key question
to him is whether there is way to change culture so clinicians can have real
conversations with their patients about prognosis and end-of-life care. He
and his colleagues at Vital Talk have been trying to do just that by teaching
doctors to pay attention, at the times that matter most, to what their
patients are saying to them and to talk back to them like human beings,
not as if they are talking to the house medical staff. Today, he added, the
patients who doctors like best are the ones who can report on their symptoms
and treatments as if they were medical students during rounds.
The comprehensive program that he and his colleagues developed,
OncoTalk, was started 15 years ago as a 4-day intensive skills retreat,
funded by the National Cancer Institute (NCI), for 115 oncology fellows
from 62 institutions using actors trained to be patients. The patients were
of various ages and socioeconomic backgrounds who knew no medicine,
and the fellows’ interactions with the mock patients were recorded before
and after communication skills training sessions (Back et al., 2007). When
the recordings were later played to a group of listeners, they could readily
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
PROFESSIONAL TRAINING 43
tell whether the recordings were from before or after training and were
amazed at the change in communication style. Of the eight communication
skills that OncoTalk emphasizes, the most important is how to deal
with emotion. Doctors, said Arnold, do not like emotions, and he blamed
this on the way they are trained—to learn facts and to fall back on book
knowledge when confronted with an uncomfortable situation. He noted
that Lesley Fallowfield at Brighton and Sussex Medical School has taken
the same approach and found that not only does training improve communication
between doctor and patient, but that skills continued to improve
6 months after training because the physicians liked that they could have
better conversations with their patients.
What these approaches share, said Arnold, is they provide trainees with
the opportunity to address barriers and to both practice the skills they were
learning and watch their colleagues engage in simulated conversations. Individualized
feedback is also important, as is providing a supportive and safe
environment in which to learn and practice these skills that do not come
naturally to most physicians. They emphasize “ask before tell” and letting
the patient lead the conversation, and they teach physicians how to attend
to emotions and give information in simple language based on patient need.
The problem with these approaches, said Arnold, is they are time
intensive in that they need to take place over 3 to 4 days. In an attempt to
remedy that problem, he and his colleague James Tulsky at Duke Medicine
have been testing a theory-based, self-administered, 1-hour intervention
provided on a CD-ROM designed to improve an oncologist’s response to a
patient’s expressions of negative emotion in outpatient encounters. In a randomized,
controlled trial, participating oncologists were recorded speaking
to their patients during clinic visits. The oncologists then received a lecture
on how to improve their communication skills, and 1 year later half of them
received the CD-ROM, included didactic information, video demonstrations,
and audio clips from the oncologist’s own recorded conversations (see
Figure 4-1). At the end of each module, the oncologist was asked to commit
to try targeted communication behaviors and prior to the next clinic visit,
the oncologist receives an email reminder of their commitment. The two
key findings from this study, said Arnold, were that oncologists receiving
the CD-ROM doubled the percentage of times they responded to negative
emotions, and their patients said the doctors’ communication had greater
impact (Tulsky et al., 2011).
One challenge that needs addressing is that of scale, or teaching all
doctors to communicate effectively with their patients, said Arnold. He and
his colleagues are now engaged in a study funded by the Patient-Centered
Outcomes Research Institute and the American Board of Internal Medicine
to see if this intervention can be delivered as a Maintenance of Certification
course for continuing education credits and still have the same positive
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
44 HEALTH LITERACY AND PALLIATIVE CARE
FIGURE 4-1 A computer-aided approach to teaching communication skills.
SOURCE: Presented by Robert Arnold on July 9, 2015.
effect on oncologists’ communication skills. Perhaps the bigger challenge,
though, is to create the political will to change culture. “Doctors are comfortable
doing what doctors have always done, and oncologists do not have
it in their DNA to be good communicators,” said Arnold. “My view is they
either need it in their DNA or they need to get out of medicine. We, as a
culture, need to say medicine needs to change.”
NURSE TRAINING2
Nurses are the frontline of care across disease and settings, and they
spend a significant amount of time with family caregivers, providing education
and support, said Elaine Wittenberg. When it comes to communicating
with patients and families, nurses, unlike doctors, do not need training
to initiate conversations because patients and family members typically
are the ones who start conversations with nurses. In addition, nurses are
often asked to translate what the physician has said or what a patient or
family member has read on the Internet, and in fact, one of the key roles
nurses play is to educate and promote communication among team members,
patients, and family members. Nurses provide an immense amount
2 This section is based on the presentation by Elaine Wittenberg, Associate Professor in the
Division of Nursing Research and Education at City of Hope Comprehensive Cancer Center,
and the statements are not endorsed or verified by the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
PROFESSIONAL TRAINING 45
of psychosocial
support to patients and family members—dealing with
emotions is not foreign to nurses—and they often serve as key mediators
between patients and family members in making decisions about treatments
and about goals for care.
Wittenberg explained that primary training for nurses in palliative care
started at the City of Hope with Betty Ferrell’s work creating the End-of-Life
Nursing Education Consortium (ELNEC). To date, the consortium has provided
more than 170 courses to nurses and has trained almost 20,000 nurses
in all 50 states, the District of Columbia, and 88 countries. What started
as a core curriculum has evolved into different versions for specific nursing
subgroups, such as pediatric, geriatric, and critical care nurses. Health
literacy holds an important place in these curricula because nurses are often
asked to translate complex medical words, abbreviations, and procedures,
and to describe medications and teach patients and family members how to
use medications at home.
Health literacy affects quality of care, said Wittenberg. Patients with
compromised health literacy, for example, have a hard time adhering to
medication regimens. She noted that the seriously ill patient population
and their caregivers are aging, which increases the health literacy challenge.
She also said she thinks of health literacy as including oral literacy,
which refers to a person’s ability to speak and listen. Lower listening skills,
she explained, complicate the ability to understand and recall complex
oral information and have a negative impact on medication management.
Family meetings are common in palliative care, but her research has found
that not all patients and families are comfortable communicating in a
small group, let alone a large one that includes the entire health care team.
Regardless, the health care system puts a great deal of pressure on oral
literacy skills because the most common method for getting information
from patients and family members is by asking them to provide the patient’s
medical history orally.
Over the past 5 years, Wittenberg has been working with Debra Parker
Oliver at the University of Missouri to record hospice teams talking with
patients and family caregivers and measure caregiver outcomes for anxiety
and quality of life. One finding from this work was that as the grade-level
talk in the conversation increased, so too did the anxiety level of caregivers
(Wittenberg-Lyles et al., 2013a), which in turn led to confusion among caregivers
about how to properly provide pain medication at home. Another
finding was that hospice team members used six times as many medical
words as caregivers (Wittenberg-Lyles et al., 2013b). “Yes, we do have caregivers
who can learn how to present to an attending physician, but those are
few and far between in our family caregiver population,” said Wittenberg.
The majority of the medical words used were drug names, which sometimes
were brand names, other times generic names, and 75 percent of the mediCopyright
© National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
46 HEALTH LITERACY AND PALLIATIVE CARE
cal words were not explained to the caregivers. Moreover, the parts of the
conversations that had the most medical words proceeded at a faster pace,
giving caregivers little time to respond and understand.
According to the National Library of Medicine, the appropriate level of
educational health information should range between a sixth and seventh
grade reading level, which Wittenberg acknowledged, based on her experience
with her sixth grade daughter, is not easy to achieve. Nonetheless,
training for nurses in palliative care is needed to develop this communication
skill, and toward that end, she and colleagues Joy Goldsmith, Betty Ferrell,
and Sandra Ragan have developed the COMFORT communication curriculum
(Wittenberg-Lyles et al., 2015). This curriculum is based on seven core
principles of palliative care communication: communication, orientation
and options, mindful communication, family caregivers, openings, relating,
and team. The modules on communication, for example, emphasize clinical
narrative practice. The orientation and options module teaches nurses
to describe the big picture of a diagnosis, summarize the disease path, and
share options for treatment and care in plain language and with sensitivity
to a patient’s and family’s cultural background. One of the tools they have
developed is the plain language planner for palliative care, which translates
the 20 most commonly used medications and symptoms into plain language
at the sixth grade level based on five readability indices. The planner includes
such plain language essentials as using the active voice, using the patient’s
and doctor’s names, speaking in the second person, limiting jargon and
defining new words, and keeping sentences to 15 words or less as a means
of limiting the amount of information provided at one time.
The initial research with the planner compared the written responses
from 155 nurses recorded before and after the planner was introduced and
used by the nurses (Wittenberg et al., 2015). The nurses were asked to
explain a medication and symptom to a patient, and results showed they
were able to integrate and use plain language after attending an educational
session on the planner. Most importantly, said Wittenberg, the amount of
jargon decreased and the use of active voice increased.
In January 2015, the COMFORT communications team launched its
first training efforts, including instruction on how to use the plain language
planner, for 30 hospital-based palliative care teams across California.
Wittenberg
and her colleagues have more recently trained 100 nurses
nationwide, with plans to train another 100 in October 2015. To help
further disseminate the planner, her team has created a pocket guide and
integrated it into an app called Health Communication for Apple devices.
She and her colleagues are also adding additional information on oncology
symptoms and medication side effects to the planner at the request of
some of the providers who have participated in their studies. They are also
translating the planner and the app into Spanish. In closing, Wittenberg
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
PROFESSIONAL TRAINING 47
mentions that the Textbook on Palliative Care Communication, which has
five chapters on health literacy, would be published in October 2015.
DISCUSSION
To open the discussion, moderator Renee McLeod-Sordjan asked the
two panelists to talk about how the medical profession is preparing the next
generation to be better communicators and produce the necessary culture
change. Wittenberg said she is excited, not dismayed, about the future
because the stage has been set to determine what palliative care communication
should look like and how it should be delivered given what has been
learned through research over the past 15 years. The challenge, she said,
is to develop tools for health care providers to use. She noted the decision
aids and question prompt lists that Thomas Smith spoke about as good
examples of the kind of tools that are needed. “Some specific disease areas,
such as oncology, are already developing those tools, but from a palliative
care perspective, we do not have palliative care decision aids per se,”
said Wittenberg. The next step, she said is to conduct quality research on
communication strategies that can be used to train providers in all areas of
medicine. She also said interprofessional education should be prioritized as
a key component of this effort to drive home the point that it is the entire
health care team’s responsibility to provide information to patients and
family members at the appropriate health literacy level. “There is a team
process piece that has to be accounted for when we think about training
providers about communication,” she said.
Arnold said that medical schools are doing more today to teach communication
skills. Vital Talk, for example, is working with cardiologists,
nephrologists, and neonatologists, and he has heard that a course for pediatric
cardiologists is being developed as part of physician training. To him,
there are two big challenges facing the next generation of health care providers.
The first is to ensure that once they train to be good communicators
that they move into an environment that rewards them for that skill. “Are
they going to be in an environment in which a 10-minute conversation is
5 minutes too long because they have too many other things to do that the
health care system says are more important than communication?” asked
Arnold. Second, he said, it is important not to just add more cognitive material
to the training the next generation receives because decisions are not
made entirely on the basis of facts. He mentioned emotional intelligence as
being important. “We need to think about what will help clinicians have
emotional resiliency to have these hard and sad conversations,” said Arnold.
McLeod-Sordjan said that was an excellent point and asked the panelists
about their expectations for health literacy given that health care providers
are no longer getting trained in silos. Arnold said that interprofessional
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
48 HEALTH LITERACY AND PALLIATIVE CARE
communication training is a good idea, though he had no idea how to do
it. “We do not even know how to make sure that doctors and nurses have
good communication skills let alone how to put them together so that they
do not conflict with one another,” said Arnold. This is particularly true, he
added, given that in today’s health system the same nurse and doctor rarely
work together on a regular basis. He used a school band as an analogy. “It
would be like every week having a different band because you took kids
from different schools and put them together every week and expected them
to play well.” Though there are many opportunities, he said, the health care
enterprise still needs to figure out which systems will work better for patients
and how to create a health care system that better meets patient needs.
One advantage of working with a palliative care team, said Wittenberg,
is that its members stay fairly constant. “If you have everybody using the
same language and practicing together in a team-based approach, that
is going to initiate cultural change at your institution,” she said. “It is
also going to help patients and families when they hear the same message
and the same language from the palliative care social worker as they do
from the palliative care nurse and palliative care physician.” Toward that
end, she encourages palliative care teams to work together to develop unified
definitions and explanations that are specific for the patient population
they serve, as well as culturally appropriate metaphors. She also believes
that if every member of the palliative care team is consistent in the language
they use with patients and families, then patients and families are going
to have expectations of consistency and express that to other providers
they encounter. That, she said, will further the culture change that needs
to happen.
Winston Wong from Kaiser Permanente asked Wittenberg if she knew
of any curricula that were being developed for interdisciplinary training for
nursing and medical schools. Wittenberg replied that she does not know
of any standardized communication training programs that are available
today, though ELNEC is developing an undergraduate nursing curriculum
on communication that will be tested online in four states in the upper
Midwest. Arnold added that the Macy Foundation has funded a number
of initiatives in this area. The University of Pittsburgh, for example, offered
a course that nurses and medical students took together when they took
care of patients in long-term care. What is not clear from studies of these
efforts is how well the different professions give consistent information
to patients, as opposed to how well they get along with each other and
understand what each other does. Most of the work, he said, has focused
on measuring the latter. McLeod-Sordjan added that schools need to move
away from teaching nurses and doctors how to break bad news to patients
and then move on to teaching them more broadly how to have difficult
conversations about chronic disease.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
PROFESSIONAL TRAINING 49
Wilma Alvarado-Little noted that the presentations have focused on
adult palliative care, and she asked if any considerations have been made
regarding pediatric palliative care. Arnold said that there are a number of
ongoing efforts in that area. A program at Johns Hopkins Medicine, for
example, trains neonatologists to talk to parents about their critically ill
infant, and the University of Pittsburgh has a program for pediatric intensivists.
The University of Indiana is teaching pediatric oncologists how to
talk with parents and children, and Vital Talk has a group of individuals
who are beginning to do work in pediatrics. Wittenberg said that ELNEC
is working with its core curriculum to develop one specific for pediatrics.
Cindy Brach from the Agency for Healthcare Research and Quality
(AHRQ) commented that while there have been several mentions of the
need for culture change, the two panelists both spoke about stand-alone
interventions to intervene with specific clinicians, which she said does not
sound like a recipe for culture change. She then asked the panelists if either
of them had any experience trying to change an entire institution or health
care system and sustain change. Arnold said that the first step that he has
taken at UPMC Health System has been to measure how many seriously ill
patients there are at each of the system’s hospitals and to then measure how
many of these patients have a documented discussion about goals of care. He
is now developing metrics that he can take back to the chief medical officer
of each hospital and the heads of each service line to document the scope of
the problem. Starting in 2015, UPMC is conducting 1-day courses for practicing
clinicians—the fellows already take courses—and the heads of every
service line have agreed that every clinician will take this course. The course
will use simulated patients to illustrate how to talk about goals of care.
His next move, he said, will be to enact policy that will forbid any
medical student or intern to have this conversation with a patient, given
that they have not been trained to do so. “We do not let medical students
or interns put in Swan-Ganz catheters, and any intensivist will tell you that
it is harder to have a conversation about goals of care than it is to put in
a Swan-Ganz catheter,” said Arnold. In his opinion, what is more important
than establishing these systems and rules in the hospital is to develop
programs for use in the home care and ambulatory-based setting to really
produce culture change. The goal, he said, should be to have these conversations
with people before they need to be treated in the hospital.
Wittenberg remarked that the first national nurse communication training
program just started in 2015. Nonetheless, some of the participants in
this program have already been recognized in their institutions as being
leaders in communication training and being initiators of culture change.
One of the goals of her program, she said, is that the nurses will themselves
become trainers when they go back to their institutions and implement
some sort of cultural change. She noted there is a competitive application
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
50 HEALTH LITERACY AND PALLIATIVE CARE
process to be accepted into the course, and one of the requirements is to
identify three goals for when the applicant goes back to his or her institution.
As part of the evaluation of the communication training course, she
and her colleagues follow up at 6 months and 12 months to find out what
the trainees have done since returning to their institution with regard to
how many people in how many disciplines they have trained and what new
systems they have implemented. Part of the COMFORT curriculum, in fact,
includes supplemental resources to initiate change, including research-based
decision aids, question prompt lists, and tools to measure and evaluate the
communication skills of the providers that they then train.
Michael Paasche-Orlow from the Boston University School of Medicine
applauded both speakers for talking about culture change and pushing that
conversation forward. He also noted the parallel focus on communication
between health literacy and palliative care. He then asked the panelists
to comment on how they think about the problem in a broader cultural
context rather than in terms of one institution or health care system at a
time. Arnold said that he would like to see more emphasis on community
and public education and getting to the public before they enter the health
care system. Part of this effort will be to train patients and caregivers to
expect something different from the health care system than the promises
that the next miracle is right around the corner. He commended the Center
to Advance Palliative Care for its efforts in public education, and also
called out newspapers and science reporters for their role in touting the
next promising cure.
Wittenberg said that she would like to see the topics and scope of communication
training broadened. As an example, she said she would like
all health care providers to receive spiritual care communication training
and more interprofessional training. She would also like to see training for
family caregivers and noted that ELNEC is about to run a trial that offers
a communication guide for caregivers that aims to ease the burden placed
on caregivers to relay hard news to, and mediate among, family members.
“We need to pay more attention to this communication task that family
caregivers take on and provide some training and support for that as well,”
she said, adding that nurses are in a good position to help support caregivers
with that task.
Bernard Rosof closed the discussion for this panel with the comment
that it is time to stop teaching medical students as individuals and start
teaching them as part of a health care team, perhaps with patient advocates
such as Beverly Alves involved in that team. “The real opportunity
to address these challenges is to do it with the team and not with the individual,”
said Rosof. He noted that there are, in fact, medical schools that
are taking this approach, and his prediction is that they will be more successful
training physicians to be good communicators and team members.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
51
The afternoon’s first session included four speakers presenting different
perspectives on how to provide palliative care. Reverend Richard
Freeman, Sr., a member of the Pastoral Team at the University of
Pittsburgh Medical Center (UPMC) Children’s Hospital and Senior Pastor
of the Resurrection Baptist Church, discussed how to integrate spiritual
care into palliative care. Carol Levine, Director of the United Hospital
Fund’s Families and Health Care Project, provided a family caregiver’s perspective,
and John Cagle, Assistant Professor at the University of Maryland
School of Social Work, spoke about the role that social workers play in
palliative care. Ginger Marshall, National Director of Palliative Care for
Hospice Compassus and President-Elect of the Hospice Palliative Nurses
Association, then addressed the role of nurses in providing palliative care.
An open discussion moderated by Yael Schenker, Assistant Professor in the
Division of General Internal Medicine, Section of Palliative Care, and a
member of the Clinical and Translational Science Institute at the University
of Pittsburgh, followed the four presentations.
HOW TO BRING SPIRITUAL CARE INTO PALLIATIVE CARE1
“I believe that the essence of what we do in palliative care, what we
do in spirituality, is tending to the broken heart,” said Richard Freeman as
1 This section is based on the presentation by Reverend Richard Freeman, Sr., a member
of the Pastoral Team at the University of Pittsburgh Medical Center Children’s Hospital and
Senior Pastor of the Resurrection Baptist Church, and the statements are not endorsed or verified
by the National Academies of Sciences, Engineering, and Medicine.
5
Integrated Care Teams
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
52 HEALTH LITERACY AND PALLIATIVE CARE
an introduction to his presentation. His hope, he said, was that his remarks
would help the workshop attendees gain an appreciation for the imperative
of spiritual care, increase their personal posture of attending to patients’
spiritual needs, and develop a better repertoire of resources to aid in meeting
the needs of patients. He also noted that palliative care is a “heart
thing—it is moved by what drives us at the core of our being. If the core
of our being is not engaged in this work, we will not move forward.” His
challenge to the workshop was to not overintellectualize what the human
spirit cannot comprehend and to not fall back to the position of developing
another tool.
Freeman said that he was impressed with the field’s efforts in teaching
and building what he called brand new hammers. “But my challenge
is we have to build better carpenters, and we do that by dealing with the
continuum of care and with the heart of people,” he said. The one thing
that has been missing from the day’s presentations, he said, is any mention
of a person’s life before they became ill. To truly understand patients and
their needs from the health care system, it is necessary to understand the
histories that are integral to them, explained Freeman. He used the story
that Diane Meier told about Mr. R. and his need to speak to his son, talk
to him about the burdens of his soul, and ask for forgiveness from his son.
It was only then that he was able to find peace and die.
Freeman then talked about the synthesis of humanity as a meshing
of body, mind, and spirit. Health care providers, he said, do well with the
body and mind because they believe they can fix them when they are broken,
but they do not do as well with a person’s spirit, which he defined as
the repository of meaning making. Dealing with this last piece of humanity,
he said, is where his responsibility as a pediatric chaplain lies, adding that
the way these three pieces fit together is shaped by who each person is. He
noted that he is also trained as a psychotherapist, and during his training he
was forced to develop a keen sense of introspection to understand his own
motivations. If he had one wish, he said, it would be for every clinician to
go into therapy to truly understand what drives them to do what they do.
“When they come to terms with that, they will no longer be exercising it in
the context of being a caregiver,” said Freeman.
He then told a story of a mother who was tending to her son at
Children’s
Hospital. As is his practice, he came into the room, introduced
himself as the manager of the pastoral department, and let her know that
he was available to help. Later that day, he got a phone call from the boy’s
nurse who said this woman wanted to talk to a psychologist—she had
sequestered herself and was crying profusely. When he came to her son’s
room, she said to him that she had asked for a psychologist, but that he
would do, and she abruptly stopped crying. She then informed him that she
was Jewish, and that she did not believe in Jesus Christ. He said that was
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 53
okay, that he did, and asked if they could talk. He recalled that she then
started laughing when she realized he was not there to convert her but just
to be with her, and for the remaining week and half that she was in the
hospital before her son was sent home to die she talked to him every day.
“That is the spiritual part that I am talking about,” said Freeman.
He then challenged the workshop by arguing that not doing spiritual
care may in fact be unethical. The major tenets of ethics, he said are
autonomy, nonmaleficence, beneficence, and justice. “If you don’t know my
spiritual journey, how can you say you are allowing me to work autonomously?”
he asked. “If you don’t know what vexes my spirit when you
offer me a treatment that is going to prolong my life, but is never going
to improve my lot and you are telling me I cannot go be with my God,
you might be doing something that is maleficence. If you don’t know what
drives and motivates me, you may be keeping me from the very thing that
gives meaning to my life,” he said.
How then is it possible to avoid this ethical quagmire? Informed consent,
he said, is a governing principle of patient interaction. Although often
implied, there is another principle operative in medical delivery that he
called informed treatment—that a patient gets what they desire. Spirituality,
said Freeman, must be considered when determining what medical services
are dispensed.
Returning to the idea of building a better carpenter, Freeman listed
a few steps to take to be prepared to care for all of a patient’s needs.
It is important, he said, to identify personal hot buttons, the situations
that takes someone out of their sphere of comfort. Most hot buttons, he
said, are a by-product of a person’s construct of likes and dislikes and are
informed by personal histories. It is important, too, to recognize that every
caregiving
experience is a learning experience that can help hone individual
best practices. “Understand your value system and be acquainted
with your nonnegotiables,” said Freeman. “Distinguish those values that
are your essence from those that are just important, and safeguard those
values that you esteem as your essence.” Lastly, he said, it is critical to have
spiritual integrity, the ability to differentiate one’s values from those of a
client without a compulsion to reshape the spiritual beliefs of the client.
“Nurturing spiritual integrity requires searching for the questions that vex
your spirit and that give meaning to you and you alone,” said Freeman.
“Once you have gotten those answers, find peace with it, and then leave it
alone. It is not to be dealt with in the context of a caregiver.”
It is important for health care providers to nurture spiritual integrity
because they will be more empathic in their approach when their issues are
not their patient’s issues, he explained. “We become more tolerant of differences
that are apt to be discovered when working with the dying,” said
Freeman. He noted that spiritual integrity is not the same thing as religious
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
54 HEALTH LITERACY AND PALLIATIVE CARE
training. Although religious traditions inform spiritual identity, religion is
not the sum total of a person’s spiritual essence, he explained. It is possible
to feel that one’s spiritual essence is seriously threatened, and when that
happens one should appeal to other members of the care team and perhaps
even step away as a caregiver if the situation dictates.
Freeman ended his presentation with two suggestions on how to
enhance the delivery of spiritual care. The first is to be curious, to recognize
the humanity in every patient as a common starting point from which to ask
interesting questions. The second is to be courageous and ask potentially
difficult questions. “This is not easy,” said Freeman. “Sometimes you are
going to have to ask somebody about their spiritual journey and the meaning
it gives them. It is a question that affirms the individual’s humanity, and
if we do that we have been good caregivers.”
A FAMILY CAREGIVER’S PERSPECTIVE2
Carol Levine approaches the subject of palliative care from the dual
perspective of someone who directs a project that works with family caregivers
and who for 17 years was the caregiver for her late husband, who
suffered a traumatic brain injury that left him quadriplegic and with a
severe cognitive impairment. She said that when she was listening to Beverly
Alves and Diane Meier, she could feel anger welling up inside her as she
remembered all the things she dealt with during her years as her husband’s
caregiver and saw that the situation for family caregivers has changed little
over the past 20 years. She recounted that the attitude 20 years ago was
that the wife would take care of things. “Some people go to the hospital
and lose their eyeglasses,” she said “I lost my identity. I became the wife.”
That personal experience, she said, combined with her 20 years of professional
experience in the field, colors what she had to say at the workshop.
The person who is health literate, said Levine, needs to understand not
only the medical situation, what the treatment might be, and how to make
choices, but also understand bureaucratic language, insurance language,
and institutional arrangements. From her perspective and experience, health
literacy is not a problem solely of poor people, those with low education
levels, or of any ethnic or racial group. Depending on the circumstances,
anyone can be health illiterate as it is impossible to be completely up to date
on all knowledge pertaining to health and health care. To make that point,
she told the story of an ambulatory clinic administrator who asked her to
explain the difference between hospice and ambulatory care. “Here is a per-
2 This section is based on the presentation by Carol Levine, Director of the United Hospital
Fund’s Families and Health Care Project, and the statements are not endorsed or verified by
the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 55
son in the health care system and she did not know,” said Levine. “We have
to assume that at some point, every one of us will need more information
and better explanations.” In her opinion, she added, understanding services
may be harder than understanding basic health information.
When she started her journey she expected the health care system to be
a maze and expected that taking her husband home from the hospital was
not going to be simple. “Nurses and the social worker waved good-bye to
me from the rehab facility and said ‘You are on your own now, dear,’ and
I was,” she recounted. She figured, though, that being smart and having
accomplished much during her life that she could figure out how to get the
services she needed to care for her husband. What she encountered, though,
was not so much a maze as an abstract painting with no clear path and
nobody to guide her. There were individuals who could help her navigate
one little section of the journey, particularly with regard to the hospital experience,
but there was nobody to help her once she was in the community.
There are several reasons, said Levine, that palliative care is hard to
understand. To start, it is hard to spell and pronounce, and there is the
confusion between hospice and palliative care. Health care professionals do
not even share the same definition. There are palliative care doctors, who
offer specialized medical care. Home care nurses think they are providing
palliative care but they are really providing ordinary care for sick people.
Long-term care staff believe they are providing palliative care when they
are keeping residents quiet and comfortable. “If providers have different
definitions, how can the patient and the family caregiver understand it?”
asked Levine. She noted that there is much to be unlearned about palliative
care before new information is presented to patients and families. Contrary
to common belief, palliative care is not just for dying, it is not a program
to save the government money, and it does not require hospitalization.
Palliative care does not mean giving up hope, nor does taking pain medication
lead to addiction. Most people believe that insurance will not cover
palliative care at home, which may or may not be true, and it is common
to assume that palliative care means the doctor is abandoning the patient
and family.
From the perspective of the family caregiver, there are special challenges,
said Levine. There is an intense emotional component, and it is
important for clinicians to recognize that and confront it directly. Levine
suggested that the simple statement, “I understand this is a difficult and
emotional time for you,” can mean a great deal coming from members of
the health care team. A challenging role that the family caregiver takes on
is making health care decisions either with or for another person, which
is not only difficult but can cause conflict within the family. Levine noted
that there are often people within a family who each perceive they have an
equal role to play in decision making yet come to the table from different
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
56 HEALTH LITERACY AND PALLIATIVE CARE
perspectives and with different information about and understanding of the
family member’s medical situation.
Often, family caregivers feel excluded from the health care team. Levine
recounted that when she was caring for her husband, she repeatedly asked
to have a meeting with his health care team. It never happened even though
she knew there were team meetings. Affordability is a major concern of
family caregivers, and Levine noted that Medicaid Managed Long-Term
Care may no longer cover all of the services the caregiver may want for
their loved one. Family caregivers also worry about being able to provide
complex care at home. “Palliative care as it is practiced today is not chicken
soup and a pillow,” said Levine. Family caregivers are not getting the
proper training to manage a morphine drip, a peripherally inserted central
catheter, and other complicated procedures, and Levine questioned how
that was acceptable practice.
United Hospital Fund’s free Family Caregiver Guide to Hospice and
Palliative Care (United Hospital Fund, 2013) is an attempt to provide this
kind of information, and it includes a chart comparing hospice and palliative
care (see Table 5-1). Levine said both the English and Spanish versions
are the most frequently downloaded guide to palliative care. It is also available
in Chinese and Russian. Its popularity, she added, suggests that family
caregivers are not getting information from health care providers.
Caregiver assessment can be used as a guide to discussion, but Levine
suggested that it should not be done in the manner of a formal medical
exam. Start by acknowledging that the caregiver has much to learn about
palliative care and how it will affect the patient, and learn about the caregiver’s
situation and who will do what for the patient. Ask the caregiver
about his or her other responsibilities for an honest assessment of their
limitations, and probe for worries and concerns, which is often the most
revealing part of the assessment and can provide answers that range from
the mundane—can I get home in time to pick up my child from school?—to
the existential—why is this happening?
The most important thing to do for family caregivers, said Levine, is
to involve them at every stage of the patient’s care and decision-making
process so nothing comes as a big surprise. Start the discussions early, not
when a crisis situation develops, and be available to offer support and
training. Levine reminded the workshop participants about the importance
of dispelling myths and answering questions as often as needed using clear,
simple language. In conclusion, Levine described the four habits approach
to effective communication (Frankel and Stein, 1999), which are to invest
time at the beginning of the process to develop trust and learn about the
patient’s and family caregiver’s perspective early rather than when a crisis
arises. Demonstrate empathy, both in words and body language, and invest
in the end by summarizing what was heard and what the next steps will be.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 57
TABLE 5-1 United Hospital Fund’s Comparison of Hospice and
Palliative Care
Palliative Care Hospice Care
Goals To assess and treat the patient’s pain
and other physical, psychosocial, and
spiritual problems.
To keep the patient comfortable,
as free as possible from pain and
symptoms, and allow him or her to
maintain a good quality of life for the
time remaining. Hospice accepts death
as an inevitable outcome for a patient
with a terminal (end-stage) illness.
In hospice, both the patient and the
family are the focus of care.
Patients Palliative care accepts patients who
have complicated or advanced medical
disease. There is no time limit in terms
of life expectancy—patients may or
may not be dying. Patients can get
treatments intended to cure. They also
can participate in research studies.
Hospice only accepts patients who are
near the “end of life” (meaning they
have a terminal illness) and are likely
to die within 6 months if the disease
runs its normal course.
Where
care
occurs
Palliative care is usually given in
hospitals. Sometimes it takes place
at nursing homes or assisted living
facilities. Palliative care at home is
possible but not readily available.
Most hospice care happens at home,
although it can also be given in other
settings as well, such as the hospital,
nursing home, or assisted living facility.
Who
provides
the care
Palliative care is a medical
subspecialty. This means that doctors
and nurses who practice palliative
care extra training about ways to
manage symptoms. They work with a
team of other professionals.
Hospice care is a team approach, led
by doctors and nurses with special
training. Specialists may provide
spiritual, psychosocial and other care.
Hospice care may require a lot of time
and effort from the family.
Paying
for
services
There is no special insurance benefit
for palliative care. The patient’s
health insurance generally covers
palliative care services.
Hospice is a Medicare (federally
funded) program. Many state
Medicaid plans and private health
insurance plans pay for hospice.
A patient who chooses the Medicare
hospice benefit agrees to give up
treatments meant to cure disease. This
is in return for other types of support
and supplies.
SOURCE: Presented by Carol Levine on July 9, 2015.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
58 HEALTH LITERACY AND PALLIATIVE CARE
A SOCIAL WORK PERSPECTIVE3
John Cagle, who was a hospice social worker for 10 years before
assuming his current position, said he is ready for the culture change some
of the speakers had discussed. “I would love to see what we have been practicing
in the field implemented sustainably across the country,” said Cagle.
He then gave his working definition of palliative care as being patient- and
family-centered, interdisciplinary, focused on quality of life, and can take
place either inside or outside of hospice. Social work, he said, is part of the
interdisciplinary team that addresses the multidimensional needs of patient
and family (see Figure 5-1). He noted that there cannot be palliative care
without the family or a truly interdisciplinary team addressing these multidimensional
needs.
The different disciplines involved in true palliative care each bring a
unique set of skills, though there is overlap. Cagle sees the interdisciplinary
team as a Swiss Army knife for palliative care, with social functioning as
the can opener because social workers get people to open up. Social care
has to be integrated into palliative care given that socioeconomic factors
account for as much as 40 percent of the determinants of health, while
health care accounts for only 20 percent (see Figure 5-2). In fact, he views
medical care much like water for a plant—it is important and good, but
too much can be a bad thing.
The role of social workers within palliative care is to attend to many
of the nonmedical social, emotional, behavioral, and environmental aspects of
care. Social workers also provide a comprehensive psychosocial assessment of
a patient and family, help patients and families navigate complex health care
systems, and negotiate transitions across settings. Social workers can help
foster coping and minimize psychosocial distress, provide emotional support,
and facilitate decision, often by leading or coordinating family discussions
about care goals. He said there is a belief that social workers are not conducting
these family meetings but in fact they are (Meeker et al., 2014; Sharma
and Dy, 2011). Other roles that social workers play include improving access
and adherence to treatment and connecting families to needed resources
available in the larger community.
Health literacy, palliative care, and social work intersects in five places,
said Cagle. These include
• Careful attention to language
• Addressing myths and misperceptions
• Advocacy for social justice and vulnerable populations
3 This section is based on the presentation by John Cagle, Assistant Professor at the University
of Maryland School of Social Work, and the statements are not endorsed or verified
by the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 59
R02922
Figure 5-1
vector editable
FIGURE 5-2 Social determinants of health.
SOURCE: Presented by John Cagle on July 9, 2015.
FIGURE 5-1 A graphical representation of the multidimensional nature of palliative
care.
SOURCE: Presented by John Cagle on July 9, 2015.
Physical
Environment
Environmental quality
Built environment
10%
Socio-Economic
Factors
Educa
on
Employment
Income
Family/social
support
Community safety
40%
Health Care
Access to care
Quality of care
Health
Behaviors
Tobacco use
Diet & exercise
Alcohol use
Unsafe sex
30%
20%
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
60 HEALTH LITERACY AND PALLIATIVE CARE
• Facilitating coping and minimizing distress
• Acknowledging uncertainty and change
Schools of social work focus on communication and family dynamics,
part of which involves paying close attention to language. Language is how
people make sense of the world, yet the health care system fails repeatedly to
use appropriate language. The potential pitfalls and missteps include using
medical jargon, acronyms, and Latin phrases. Basic terms such as oncologist
do not make sense to many people, said Cagle. The volume of information
given to patients and families is often overwhelming, and as an example,
he said he has seen families receiving 2-inch-thick stacks of information at
hospice admission. “We cannot expect them to retain all of information,”
said Cagle. Individuals on the health care team often lack the time to solicit
information from and provide proper explanations to family members,
suggesting the need to better manage the way team members work to meet
family needs.
Metaphors may seem useful and are well intended, but metaphors such
as “fighting against cancer” can put patients in a position where they feel
they are fighting against themselves, producing an intrapsychic dilemma.
Moreover, when a patient reaches a point where they are going to succumb
to their illness, they can feel that they did not fight hard enough, producing
subtle blame on the patient. Cagle also said that absolutes need to be
avoided—instead of saying there is nothing more to do, say it is time for
palliative care and expert pain and symptom management, which are not
doing nothing. It may seem that there are few options when therapy fails,
but the truth, he noted, is there is much that can be done, such as paying
attention to quality of life and dignity; exploring and defining the family
role from that point on; mobilizing social, emotional, and spiritual supports;
and strengthening relationships. It is also important, he added, to
be attuned to culturally specific terms. As an example of the latter, he has
found in his own research that the term good death, which is used often
in the medical setting, is not a term found in the Hispanic lexicon, and
Hispanics are more likely than members of other ethnic groups to describe
death as bad rather than good.
“We need to choose our words carefully because the way we frame
decisions affects how decisions are made,” said Cagle. “It is important to
recognize our own biases, our own perspectives, our own prejudices so
when we go in to talk to the patient and family, we understand our own
frame of reference.” Paying attention to body language is also imperative.
“If we ask a question and we are nodding our head, we might be prompting
a yes answer,” he said as an example.
Cagle agreed with Levine that it is important to educate patients and
families and to address myths and misperceptions. He noted that only
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 61
20–30 percent of Americans have heard the term palliative care, and while
85 percent have heard of hospice, nearly two-thirds do not know that
hospice requires patients to forego curative treatment. When he and his
colleagues administered a true-false test related to hospice, the mean score
was 78 percent, a C plus grade. Common misconceptions about hospice
include it is only for cancer patients, it is a place, it is only for the patient, it
is expensive, and it stops after 6 months. Patients and family members also
overestimate the likelihood that treatment will succeed and underestimate
the risks and costs of therapy even though many of the best interventions
have low rates of success and high rates of burden, said Cagle. He is particularly
concerned, he said about the disparities in understanding and utilization
among African Americans and Hispanics, as well as among other
high-risk populations. He noted that an estimated 40 percent of patients
who qualify for hospice care never receive it (Harrison et al., 2005).
It is also vital, said Cagle, to address the emotional and psychological
factors, such as shock, denial, anger, blame, depression, and anxiety that
can impede the ability of a patient or family member to process healthrelated
information. Helping patients and families dealing with uncertainty
and change is another important consideration for the health care team.
The truth, said Cagle, is that there are many unknowns when it comes to
serious illnesses and the potential effects of treatment, yet health care professionals
most often focus on facts. “We need to have frank conversations
about what we do not know,” he stated. Regarding change, health literacy
and preferences may change as a result of medication side effects, disease
progression, and emotional capacity.
In conclusion, said Cagle, health illiteracy is invisible and requires
vigilance on the part of the health care team. It is important to assess for
it, to start where the patient and family are when they enter the health care
system. Communication is key to addressing health literacy, and while it
is impossible not to communicate in some way, not all communication is
effective or appropriate, he emphasized. Health care team members need
to pay attention to nonverbal cues and the way they communicate expectations.
Empathy is vital, as is involving the family whenever possible, including
in team meetings. Greater transparency with regard to health care costs
is badly needed, he said, and paying attention to individual preferences is
paramount. “I think that should be the prime directive for palliative care,
and whatever metrics we develop to measure the success of palliative care
should account for patient preferences,” said Cagle. To illustrate that last
point, he told the story of a patient whose pain was registering 8 on a scale
of 10 but did not want pain medication because the pain made him feel
alive even though he was dying.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
62 HEALTH LITERACY AND PALLIATIVE CARE
A NURSING PERSPECTIVE4
Ginger Marshall started her presentation with a “connect-to-purpose”
story involving a recent clinical encounter during which she and a medical
resident met with young woman to discuss treatment goals for her mother,
who was unable to make decisions because of confusion she was experiencing.
The resident began explaining some of the medical issues confronting
their mother, using terms such as hepatic involvement, renal insufficiency,
encephalopathy, head CT [computed tomography] consistent with malignancy,
and resuscitation. Marshall, whose own anxiety level was rising with
each piece of jargon, saw the daughter’s face reflect fear, frustration, and
boredom as the explanation continued. The resident finished and asked the
daughter if she had any questions, but before she could respond, Marshall
asked the daughter if it would be helpful if she summarized a few of the
points the resident had made. She explained to the daughter that her mother
had colon cancer and it had moved to her liver, and because of that, her
liver was not filtering out toxins in her blood as well as it used to, causing
her confusion and affecting her kidneys. She also explained the special
X-ray that had been done on her mom’s brain and that it had found a new
site of cancer.
Marshall then talked more specifically about what her mom would
want done if her heart stopped or if she stopped breathing, and she
explained that she understood the huge responsibility involved with making
those decisions for her mother. Marshall also encouraged her to allow
her mother’s voice to speak through her to be able to make decisions, not
on what she felt would be best but what her mother would say if she was
there with them. When she finished, she asked the daughter if she had any
questions and she asked Marshall if she could give the same information to
her brother and sister, who would be arriving shortly. Marshall replied she
would be happy to, and as she and the resident turned to leave the room,
the daughter leaned forward and said to the resident that it was okay for
him to be there when her siblings arrived, but that she wanted Marshall to
do all of the talking.
Turning to the subject of her talk, she cited Terri Ann Parnell’s definition
of health literacy (Parnell, 2015): “The relationship between the skills
of persons receiving care or treatment and the professionals or systems that
are providing the care and treatment.” She favors this definition because
it emphasizes the intersection of how well the patient takes in information
with how well that information is delivered. That intersection, she said, is
4 This section is based on the presentation by Ginger Marshall, National Director of Palliative
Care for Hospice Compassus and President-Elect of the Hospice Palliative Nurses Association,
and the statements are not endorsed or verified by the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 63
what enables patients and families to exercise their autonomy in making
decisions.
Marshall noted that more than 80 percent of older adults suffer from
at least one chronic condition, and nearly 90 percent of deaths involving
patients over age 65 are directly associated with one of nine chronic illnesses:
cancer, chronic liver disease, chronic lung disease, congestive heart
failure, coronary artery disease, dementia, diabetes, peripheral artery disease,
and renal disease. Rarely, she said, does she see a patient with only
one of these illnesses. Chronic disease is tied to health outcomes, she added,
by health literacy because, “If patients with chronic disease are not able to
understand what we need them to do to achieve their goals, either because
they do not have the ability to understand or we have not done a good
job explaining, there will be a significant impact on their health outcome,”
said Marshall. Moreover, she added, when a patient’s condition requires
palliative care, health literacy also affects autonomy and a patient’s ability
to give informed consent regarding what they want and do not want in
terms of care.
Nurses, said Marshall, provide patient education and care for a diverse
population across the life span in multiple health care environments. As of
June 2015, there are close to 4 million nurses working in the United States,
with more than 120,000 nurses working in Virginia and the District of
Columbia alone (Henry J. Kaiser Family Foundation, 2015). It is difficult,
she said, to determine how many of these nurses are working in palliative
care or hospice, but the Hospice & Palliative Nurses Association has
more than 11,000 members, and approximately 14,000 nurses are board
certified in hospice and palliative care, including advanced practice nurses,
registered nurses, pediatric registered nurses, and licensed practical and
vocational nurses. Hospice and palliative nurses provide care in the acute
setting, outpatient clinics, skilled nursing facilities, assisted living facilities,
hospice facilities, at home, parish nursing, prisons, and community centers.
A study (Roter, 2000) found that patients recall and understand as
little as half of what they are told by their health care provider. Marshall
said her expectations are lower, and she tells patients and families that she
anticipates they will retain 20 percent of the information she provides them,
which is why she repeats information every time she encounters them. The
reasons for such poor retention, she said, include the fact that patients
and families are often experiencing emotional instability, which can impair
information processing (Wittenberg-Lyles et al., 2013a), and that patients
and family members may not all be on the same page or there may be family
dynamics that prevent consensus. Interdisciplinary team communication
and poor communication across the care continuum, which can stretch
from the emergency department to a long-term care or hospice facility,
also contribute to poor information retention. Nurses, given their frontline
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
64 HEALTH LITERACY AND PALLIATIVE CARE
presence in hospice and palliative care, can play a role in alleviating poor
information retention and improving patient autonomy by becoming more
involved in patient education. Appropriate patient teaching, said Marshall,
reflects a patient’s developmental stage, age, culture, spirituality, preferences,
and health literacy considerations.
Health literacy, she said, has to become as automatic for nurses as is
hand washing. “It would be wonderful if every time we had a conversation
with a patient, we would be asking ourselves if we are conveying information
and if we are reading the patient correctly that they are understanding
things,” said Marshall. She believes that nurses can be on the frontline of
watching for jargon and alerting other members of the health care team
when their explanations are missing the mark with patients and families.
Nurses, she added, can be advocates for health literacy across the entire
spectrum of care. In fact, said Marshall, the Hospice & Palliative Nurses
Association’s Advancing Expert Care initiative emphasizes health literacy. It
has created patient and family teach sheets, many of which are available in
Chinese, English, and Spanish, as well as tips sheets for nursing assistants
and quick information sheets for nurses that provide brief overviews of
diseases that can be shared with patients and families. This initiative also
offers online learning courses, and both education and research scholarships
in health literacy. Marshall noted that being a member of this association
has provided a wonderful opportunity to be mentored in her role as
a leader of health literacy in her organization. It also provides resources,
such as special interest blogs that she has used as a source of information
to help patients. She recounted an example in which she had a patient
with a calciphylaxis, a painful wound condition that can accompany renal
disease. This patient did not want to take pain medications because she
was the household member who balanced the checkbook, so she turned
to one of the association’s special interest blogs and learned about topical
opioids. With some further research, she was able to provide information
to the inpatient pharmacy, which created a topical formulation that took
the patient’s pain score from 10 to 3 within 48 hours.
Marshall then described two palliative care programs. The Carolinas
HealthCare System’s inpatient, outpatient, and virtual care programs have
been able to have all of their patient education material reviewed and
approved by the system’s health literacy committee. To improve the cultural
relevance of health information and care, the Carolinas system created a
website, Culture Vision, that enables any employee to enter, for example,
“end-of-life care for patients who are practicing Buddhists” and get information
on how to better care for those patients. The Carolinas system
has also created a 7-hour compassionate care course, based heavily on the
End-of-Life Nursing Education Consortium course, and has educated more
than 900 nurses about primary palliative care. Marshall noted that each
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 65
member of the Carolinas HealthCare System’s interdisciplinary teams meet
in a morning huddle to decide which skill set on the team can best meet a
patient’s need for that day.
She then discussed the Hospice of the Western Reserve in Cleveland,
which participated in the Family Caregiver Project run by the City of Hope.
This 18-month national education pilot project focused on assessing oncology
caregivers needs, developing an education program to meet those needs,
and then evaluating caregiver confidence and satisfaction. Marshall said
this pilot program determined that teaching instrumental caregiver skills,
such as how to turn a patient in bed, assess if a patient is in pain, and assist
with activities of daily living, improved caregiver confidence by 75 percent.
It also revealed the importance of educating hospice nursing assistants to
be able to identify a caregiver’s learning type and how to use adult learning
principles to teach caregivers essential skills. Through education, hospice
nursing assistants have been able to take information developed initially
for the caregivers of cancer patients and use it with caregivers regardless of
their patients’ diagnoses.
In closing, Marshall recommend that nurses, physicians, and other
hospice and palliative care team members receive communication training,
and that such training should be extended to all health care providers
regardless of their role or specialty. Current materials and resources related
to health literacy should be revised to include content related to chronic
illness and end-of-life care. She concluded her presentation by reading from
a thank-you card that she received when she was director of the University
of Utah Palliative Care Service. “Your team answered our questions before
we knew we had them,” read the card. That comment, she said, was a sign
that health literacy was front and center in the health care team’s interaction
and that as a result, she and her team had done a great job in caring
for that family. It is messages like this, she said, that do wonders for her
after a rough day at the hospital.
DISCUSSION
Yael Schenker started the discussion by referring to Freeman’s comment
about needing to nurture the soul and spirit of patients and families
and asked the panelists if they had thoughts about how to nurture the soul
and spirits of the palliative care team. A simple answer, said Freeman, is
to find the things that give meaning to life. “If you like playing golf, go
do it. Relax. Do what is necessary to bring peace to yourself,” he said. “It
is really as simple as that.” Another piece of advice he offered is to talk
about work with colleagues, who understand the trials and tribulations of
working with seriously ill patients better than family members. He holds
gripe sessions and cry sessions in his office to help staff make it through the
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
66 HEALTH LITERACY AND PALLIATIVE CARE
hard moments. “We are but human,” said Freeman. “Do whatever nurtures
your humanity.”
Schenker then asked Marshall if she had any ideas about how to work
more effectively in teams to extend the impact that palliative care can
have given workforce shortages that exist in health care systems. Marshall
referred to Freeman’s comment about tapping into passions with regard to
letting team members work on tasks that may be outside the boundaries of
their professional assignments but for which they have a passion. Incorporate
personal goals into team assignments, she added. “We have to think
outside the box,” said Marshall.
Cindy Brach from the Agency for Healthcare Research and Quality
(AHRQ) asked the panelists to comment more on the inclusion of patients
and caregivers in teams, but not as information conduits between family
members. Carol Levine said that teams need to do some self-reflection on
why they are resistant to including patients and family members as teammates.
She believes that one reason is fear—teams are afraid they will not
be able to talk about hard things because the patients or family members
will get too emotional. Another reason is that teams have no clear picture
of what each team member’s responsibilities are, and so there is no clear
structure for the team into which patients or family members can fit. She
added that patients and family members should have the option, not obligation,
to be part of the team, and noted that while there is no I in team, there
is a U in team when you are a family caregiver, as in “You do it,” and you
get told what to do. “The reason to involve someone in the team is not to
give them instructions but to listen to them,” said Brach. “That is part of
the culture change we need.”
Marshall made the point that she believes palliative care consulting
teams do a great job of incorporating patients and families into the
decision-making process. “I have never worked with a palliative care team
that makes a plan outside of the presence of a patient or family members,
and that does not give patients or family members control over who gets
to help with the decision-making process,” said Marshall. As an example,
Marshall recounted a case in which she saw a patient in a pulmonary clinic
and the social worker who was working with her picked up on the fact
that Marshall had missed the patient’s concern that her daughter, who was
living with her, would be involved in decision making. “She did not want
the daughter involved but was not able to tell her that,” recalled Marshall.
The social worker was able to mediate the conflict and start the discussion.
Cagle added that Debra Parker Oliver has used video links in the
home to bring caregivers into team meetings so they do not have to leave
home but can still participate in the discussion. He noted, though, that the
paternalistic settings with strong hierarchies in place in many health care
settings can create challenges to including patients and caregivers on teams.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 67
Organizational support from system leadership is essential for creating true
teams, said Cagle. “We are seeing many watered-down versions of interdisciplinary
teams out there,” he said.
Freeman commented that some health care systems do not value all
of the potential members of a team, such as social workers or chaplains.
“They do not value those nonreimbursed entities in hospitals,” he said.
He also noted that if a health care system does not start engaging every
employee—the chaplains, social workers, environmental service people,
cafeteria workers, and others—in the holistic care of the entire family, it
will sow the seeds of its own destruction because another health care system
will do those things.
Steven Rush from UnitedHealth Group commented that the definition
of health literacy used for this workshop focuses on getting and understanding
information to enable appropriate decisions, and he wondered if
there is a role for the palliative care team to help people make appropriate
decisions. Freeman replied with a statement that he acknowledged might
be controversial: that rather than following the Golden Rule of doing unto
others as you would have them do unto you, the paradigm for medical
care should be to do unto others as they want done to them. “We have to
challenge ourselves to say that we want to give you what you want,” said
Freeman. “This top-down hierarchical structure, believing we understand
what everybody needs and wants, is a flawed paradigm.” He then recalled
a time when Robert Arnold came to his hospital and asked staff how many
of them wanted to be on a ventilator—nobody raised their hands. When
he asked how many would want to be on a ventilator for 1 week and then
be fully recovered and a few hands went up, but when he asked how many
wanted to be on a ventilator if it were just for a few hours and then be
completely restored, every hand went up. The lesson of this exercise, said
Freeman, is that what people want depends on the real circumstances, and
to know what they want in a given circumstance requires asking them. “If
we do not do a good job of asking, we are just dictating and we have a
problem,” Freeman said.
In Marshall’s experience, every time one of her teams gets asked to
participate in a consult to assist with a discussion about treatment goals,
the reason is that there is a problem with health literacy. She believes that
palliative care has a large responsibility to address this issue, but she also
agreed with Arnold’s statement that it would be ideal if the palliative
care specialty did not need to exist. “Every one of the medical providers
should have the ability to recognize when there are challenges involved
with understanding.” Cagle cautioned against giving advice to patients and
family members based on what they, the team member, would do. “As soon
as we start talking about the role of the team in leading patients to make
decisions about appropriate care, the question becomes whose definition
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
68 HEALTH LITERACY AND PALLIATIVE CARE
of appropriate care,” said Cagle. That decision, he emphasized, has to be
centered on the patient. Rush seconded that statement. Freeman recalled an
incident where an oncologist told him not to mention death or dying if there
was a 75 percent chance of a cure, and his response was that if a patient
wants to talk about death and dying, that is what he will talk about with
them. Though the oncologist was not pleased then, he has come around
to realize that Freeman was right—those decisions are about the patient’s
journey, not the doctor’s.
Jennifer Cabe from the Canyon Ranch Institute said she appreciated
the “delicious morsels of hard truth from this panel,” and said that one
thing that she holds to be true is that health literacy is about advancing selfefficacy
and empowerment. “It is a two-way street between the people we
call patients and the people we call health professionals,” said Cabe. One
idea that has intrigued her is the need to increase public awareness about
the concept of pain management. Marshall replied that while she supported
that idea, she thought that providers need to be educated first. “Any type
of education about pain management to increase their autonomy and help
them make good decisions is a wonderful idea, but I think it has to be balanced
with educating health care providers about services that may not be
available everywhere,” said Marshall.
Cagle thought that it would be difficult to conduct a broad-based public
education campaign on pain management but that targeting people who
are in pain or caregivers that are caring for patients in pain can be effective.
He cited a recent study that he and his colleagues conducted on addressing
barriers to pain management and hospice with family caregivers (Cagle
et al., 2015). They saw improved caregiver efficacy related to pain and
symptom management and improvement in patient pain within 2 weeks
after the intervention. “I am optimistic about targeted approaches such as
this,” said Cagle. The problem with a larger public education effort is that
the information may not be needed for a number of years and is forgotten,
“but if you get the people who are dealing with it right then, there are ways
to open the door,” he noted.
Jennifer Dillaha from the Arkansas Department of Health’s Center for
Health Advancement asked about other disciplines that would be helpful
to bring into palliative medicine, and Levine replied that pharmacists need
to be involved. It is important, she said, to have someone on the team who
truly understands what medications do and do not do, how to prescribe
them, and if there are alternate methods of delivering them. In addition,
many patients get better information about their medications from pharmacists
than they do from their doctors. Cagle said that hospital aides
play a vital role in caring for patients and often they develop intimate
relationships with patients and family members. He noted his surprise
that aides are not heard from more in forums such as this workshop. He
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
INTEGRATED CARE TEAMS 69
also thought that perhaps someone who is technologically savvy could be
part of the team.
Marshall seconded Levine’s statement about pharmacists and said they
are often skilled at education and teaching. Another addition might be to
have people skilled in complementary medicine disciplines such as acupuncture
or Reiki. “It does not matter if as a provider you feel there is a need
for that expertise on the team, but it is about what our patients feel they
need,” said Marshall. She also remarked that she worries about pushback
from hospital administrators who are concerned about the effect on budgets
of creating bigger teams.
Michael Paasche-Orlow thought the panelists were being too polite
about the dominance that physicians have in creating teams. As a physician,
he felt he could state that “there are a lot of people who have power and
who are not sharing it.” He noted that one reason that physicians may be
reluctant to have patients and family member on their teams is that they
will then have to stop using jargon and communicate more clearly even in
that environment, not just at the patient’s bedside. He admitted that on
occasion he uses made-up acronyms in meetings with his medical colleagues
just to see if anyone will admit that they do not know something, and
nobody does. “Communication at the team level has to be improved, too,”
he said. “There are many hierarchies that need to be unpacked.”
Wilma Alvarado-Little asked the panel how interpreters were used in
their teams when patients or families members have a primary language
other than English or if they are hearing impaired, and if they were briefed
before being in the room with patients and family members. Marshall said
that in the best-case scenario, an organization has interpreters available. In
her organization, it is standard practice to meet with the interpreter to make
sure they have a good understanding of what will be discussed with the
patient and family. In smaller communities and in smaller geographically
located communities, she added, it is not unusual for those interpreters to
know the patients, and in that case it is important to make sure that the
interpreter will not have a problem interpreting for someone they know.
In the end, though, the mandate is to use interpreters. “It should never be
acceptable to have a family member interpret and make them responsible
for delivering difficult news,” said Marshall. Brach quickly noted that
AHRQ has a curriculum on working in teams with specific modules, including
video demonstrations, on how to integrate an interpreter into a team.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
71
The workshop’s final session presented four examples of how health
literacy and palliative care can be integrated into a successful
program. Stacie Pinderhughes, Director of Palliative Medicine at
Banner-University Medical Center in Phoenix, Chair of the Division of
Palliative Care at Banner Health, and Clinical Associate Professor of Internal
Medicine at the University of Arizona, described some of the ways in
which health literacy plays out in Banner Health’s palliative care program.
Dana Lustbader, Clinical Professor Critical Care and Palliative Medicine at
Hofstra
North Shore–Long Island Jewish (LIJ) School of Medicine, Department
Chair of Palliative Medicine at ProHEALTH Care Associates, and
Medical Director of ProHEALTH Care Support, then discussed a program
for providing palliative care at home. Anne Kinderman, Director of the
Supportive and Palliative Care Service at San Francisco General Hospital
and Assistant Clinical Professor of Medicine at the University of California,
San Francisco, showed how her service helps patients navigate difficult
decisions in the hospital, and Reverend Tyrone Pitts, co-chair of the Interfaith
and Diversity Workgroup at the Coalition to Transform Advanced
Care, Ecumenical Officer and General Secretary Emeritus of the Progressive
National Baptist Convention, and President and Chief Executive Officer of
Bridges International LLC, described a faith-based movement to transform
health disparities. An open discussion moderated by Marian Grant, a nurse
practitioner and assistant professor at the University of Maryland School
of Nursing, followed the four presentations.
Grant, while introducing the panel, remarked that the workshop so
far had addressed some difficult topics and highlighted some opportuni-
6
Health Literacy in
Palliative Care Programs
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
72 HEALTH LITERACY AND PALLIATIVE CARE
ties for progress. It was her hope that the four presentations would be
“little pools of light that will ultimately become beacons and that all of
us will work to together to make this type of care more widely available
in the United States.” She also acknowledged what she called a “brave
move on the part of our government yesterday,” when the Centers for
Medicare & Medicaid Services announced that it was going to propose
billing codes that would allow providers to bill for advance care planning
conversations. Recalling the days when some pundits were raising alarms
about death panels, which she considers an example of health illiteracy,
she called this announcement the start of a brave new day. “I am hoping
that the fact that in the last 23 hours since the announcement was made
that we have not heard about death panels is a sign that maybe those days
are behind us,” said Grant.
HEALTH LITERACY AND PALLIATIVE CARE
IN A LARGE HEALTH SYSTEM1
Stacie Pinderhughes started her presentation with a story about Mrs. W.,
a 61-year-old Navajo American woman who she met in the intensive care
unit (ICU). Mrs. W., who had a history of autoimmune hepatitis, hepatocellular
carcinoma, and hepatitis B, was nearing the end of her life and had
many of the complications common among critically ill patients in the ICU.
Mrs. W. was on dialysis, on a ventilator, and in septic shock, and was so ill
that she had been removed from the liver transplant list. The ICU director
had called Pinderhughes when the ICU staff had reached an impasse with the
family regarding what their goals were for Mrs. W.—the ICU staff thought
that Mrs. W. should have a do-not-resuscitate (DNR) order, but the family
did not. When Pinderhughes arrived at Mrs. W.’s room, she was struck by
how this tiny woman was connected to so much machinery, and she remembered
that she did not even see her husband through all of this equipment
until she went around to the other side of the bed.
Pinderhughes pulled up a chair, sat down, and introduced herself
to Mr. W. and asked him what the best way of honoring his needs were
regarding his communication style. For many Native Americans, talking
directly about death and dying is taboo, but Mr. W. told Pinderhughes
that he wanted her to be direct with him and give him the facts about
what was occurring with his wife. First, though, she asked him to tell her
1 This section is based on the presentation by Stacie Pinderhughes, Director of Palliative
Medicine at Banner-University Medical Center in Phoenix, Chair of the Division of Palliative
Care at Banner Health, and Clinical Associate Professor of Internal Medicine at the University
of Arizona, and the statements are not endorsed or verified by the National Academies
of Sciences, Engineering, and Medicine.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 73
about his wife. He said they had been married for more than 20 years and
had many children, and she was an independent, vibrant, and easy-going
woman who liked having pedicures and manicures. When asked about his
faith and spirituality, Mr. W. said that his family believes in the creator,
and when asked what he thought was happening to his wife, he paused
for a moment and then said it looks like she is dying. After another quiet
moment, he told Pinderhughes that his wife had been in another hospital’s
ICU 6 years earlier, connected to multiple machines, and the doctor then
had told them she was probably going to die, just as they had now. He
then said that when people die, they go out into the galaxy, past all the
planets and the stars, to be with their ancestors in a place filled with peace
and love, and 6 years ago, his wife told him that was where she was, and
that when she looked back she saw the earth as a tiny insignificant speck.
At the time, her family was holding a ceremony with the tribe’s medicine
man and he was blowing an eagle bone whistle, a sacred religious musical
instrument used in ceremonies to call the spirits. Mrs. W. told her husband
that when she heard the eagle bone whistle, she knew it was not her time
to die and she described to him that she then moved rapidly past all of the
galaxies and planets to Earth and her body. “That was a very powerful
story,” said Pinderhughes. “We were silent for a minute—you cannot fill
that space up with words.”
Pinderhughes then said to Mr. W. that it sounds like he needed to go
back to the reservation, hold a ceremony for his wife, and blow the eagle
bone whistle. Mr. W. agreed, and Pinderhughes told the ICU director
what was going to happen and to continue providing critical care in the
meantime. Much to its credit, said Pinderhughes, the ICU team supported
that decision. A few days later, Pinderhughes was called down to the ICU
because Mrs. W.’s room was full of people. When she arrived, she sat
down with Mr. W., who told her that they had held the ceremony, blew
the whistle, and his wife did not come back. At that moment, the family
decided it was time to focus on comfort and dignity measures.
Pinderhughes shared that story because she believes that it illustrates
how palliative medicine is a natural fit for health care literacy. “I think the
key elements of palliative care service delivery creates an environment that
allows health literacy to emerge,” she said. “It is an intervention focused
on aligning with patients around their goals and values and what matters
most to them.” The conceptual model that she follows, which comes from
Diane Meier, is that palliative care is a dedicated team of professionals with
different skill sets who spend the time and focus with patients and their
family members to make decisions, have a clear picture of a patient’s values,
and then create a plan aligned around those values. The application of this
model at Banner Health is done through the combined efforts of a large
educational team and the palliative medicine team.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
74 HEALTH LITERACY AND PALLIATIVE CARE
Banner Health, Pinderhughes explained, is a large health care system
comprising 28 hospitals in seven states, including the recently acquired University
of Arizona Health Network. The Banner Medical Group includes
more than 2,500 physicians, and the Banner Health Network includes 19
graduate medical education resident and fellowship programs training more
than 290 residents and fellows per year. Banner Health views its palliative
care program as a systemwide program that operates across all of its
facilities, with a high-level executive support and strong support from
the organization’s chief executive officer. The program works, she noted,
as a dyad partnership with the medical directors of each facility. Banner
Health’s vision, added Pinderhughes, is to expand the program’s involvement
in inpatient
care from 8 hospitals to 12 by 2016 and to expand into
the ambulatory setting. Currently, the palliative care program has a homebased
program and is creating two large ambulatory programs. It also has
a new fellowship residency program that accepted its first two fellows in
July 2015.
One area of emphasis going forward is to improve education of providers,
and toward that end Banner Health has created a new palliative
care clinical consensus group, joining the 22 other consensus groups in the
system. These consensus groups, explained Pinderhughes, develop evidencebased
clinical practices that affect patient care for the entire Banner Health
system. She believes that by working collaboratively with the other 21
clinical consensus groups, the palliative care group will be able to affect
health care literacy. Banner Health System Education team, through its
patient education resource center, is creating standardized content, written
at a fifth grade reading level and approved by a council of community
members, that providers can use with their patients. The System Education
team is also instructing providers on how to use these materials in conjunction
with teach-back methods. Pinderhughes noted that all new registered
nurse hires receive teach-back education and that clinical education teams
engage all nursing staff with regard to teach-back methods. One result of
involving every nurse in health literacy training is that health literacy now
starts at a patient’s admission and continues every day until a patient is
discharged. “It is an integrated process to ensure that our patients are able
to understand and process the information we give them, take it with them
from the hospital, and then implement it when they are home and when
they are in the community,” said Pinderhughes. In closing, she said the palliative
care program has prioritized equipping providers with the tools to
deliver primary palliative care in a health literate manner.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 75
A HOME-BASED PALLIATIVE CARE PROGRAM2
For the past year, Dana Lustbader and her colleagues have been creating
ProHEALTH Care Support, a home-based palliative care in the New
York market. From her experience over the past year of having conversations
in the familiar environment of a patient’s living room, with family
members and the dog sitting on the couch, she has learned how different it
is compared to having the same conversation in the ICU at midnight when
everyone is exhausted and stressed. As an example, she told the story of
Sarah, a 45-year-old with metastatic cancer, malignant ascites, and pain.
Her care is comanaged with the oncology practice, and she still comes into
the clinic weekly for intravenous chemotherapy. She also has 10 to 15 liters
of abdominal ascites drained weekly, either by the palliative care team or
by a home health agency nurse.
Lustbader explained that the ProHEALTH Care Support team is
attempting to break down the silos that currently exist in Sarah’s care. The
team supports her during her visits to the oncology clinic and provides support
to her family during home visits. For pain management, the team uses
long-acting opioids combined with short-acting agents for breakthrough
pain that Sarah experiences because her oncologist is not comfortable prescribing
the high doses of opioids that she requires. They work collaboratively
with the visiting nurse to comanage Sarah’s care, such as when she
needs additional fluid withdrawn at times when her abdomen is particularly
distended. The ProHEALTH Care Support team provides 24-hour-perday
access to either a nurse or a doctor and conducts secure video virtual
visits using telemedicine with the patient and her family members. In one
instance, Lustbader conducted a virtual visit at night with Sarah and her
son to evaluate a leg cellulitis. She prescribed oral antibiotics from a pharmacy
that was able to deliver them to the house within 2 hours, protecting
Sarah from having to go to the emergency room or urgent care center.
ProHEALTH also has a volunteer department with 15 individuals
who do massage therapy, Reiki therapy, or just sit with patients and listen.
Sarah, for example, gets Reiki therapy during her chemotherapy from one
of the program’s newest volunteers. The goal, said Lustbader, is to have a
high-touch model of total care so patients get many touches, not just medical
treatments. Her team, she explained, is doctor lean and nurse, volunteer,
and social worker heavy.
With regard to advance care planning, ProHEALTH Care Support uses
New York State’s Medical Orders for Life Sustaining Treatment (MOLST)
2 This section is based on the presentation by Dana Lustbader, Clinical Professor Critical
Care and Palliative Medicine at Hofstra North Shore–LIJ School of Medicine, Department
Chair of Palliative Medicine at ProHEALTH Care Associates, and Medical Director of Pro-
HEALTH Care Support, and the statements are not endorsed or verified by the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
76 HEALTH LITERACY AND PALLIATIVE CARE
form to document DNR and do-not-hospitalize wishes that allow patients
to receive end-of-life care at home. However, they leave all the other boxes
on the form blank because they are too treatment specific, often leading to
an ineffective serious illness conversation. The MOLST form is put in an
envelope and taped to the refrigerator door. The MOLST form is not completed
at the initial visit with a patient, unless it is appropriate. She noted
that one of ProHEALTH Care Support’s payers wanted every patient to
have a signed MOLST form, but she argued against that as it is most useful
for people with serious illness in the final year or so of life. “Everyone who
died on our program had had a MOLST so they could have their wishes
followed,” said Lustbader.
Returning to Sarah’s story, the things that are most important to her
are to die at home, never go to the hospital again, and to attend her son’s
high school graduation, which she did. Lustbader said that ProHEALTH
Care Support has been working with Sarah and her family for 9 months,
and not once has she had to go to a hospital or emergency room.
As another example of how ProHEALTH Care Support uses telemedicine
in home-based palliative care, Lustbader discussed the case of
Mrs. M., a 77-year-old woman with multiple sclerosis who lives alone
and is wheelchair bound. Mrs. M. fell and hit her leg on a radiator, went
to the emergency department to have it sutured, and 6 weeks later called
ProHEALTH Care Support at 10 p.m. when she developed a fever and
was experiencing wound pain. Lustbader had a virtual visit with Mrs. M.,
and by 11 p.m. she had the appropriate antibiotics delivered to her home,
with a follow-up home visit by a registered nurse 2 days later. As a result,
Mrs. M. did not have to call 911 and did not have to go to the emergency
room, which likely would have led to her being admitted to the hospital
given her complex medical situation. “She had perfect care and everything
was done within an hour,” said Lustbader.
Many of ProHEALTH Care Support’s patients have what she called
“the dwindles,” and do not have a hospice-certifiable diagnosis. In fact, if
a person has a hospice-certifiable diagnosis, Lustbader or one of her team
members has a phone conversation with the patient, reviews the extra layer
of support provided by hospice, and recommends that they get hospice care
at home. Typically, ProHEALTH Care Support’s patients do not qualify
for hospice because they have dementia, two or more chronic conditions,
kidney disease, or heart failure (but not with an ejection fraction below
20 percent), or are still getting chemotherapy and other treatments. They
have very poor functional status, said Lustbader, and most are homebound.
The ProHEALTH Care Support team comprises Lustbader and 1 other
physician, a program coordinator, 5 registered nurses, a licensed clinical
social worker, and 10 to 15 volunteers. The reason for the heavy emphasis
on registered nurses is that financing is not on a fee-for-service basis but
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 77
through a shared savings program with payers that delivers the care people
want and need. “Our patients do not need a lot of medical intervention,
prescriptions, or tests,” explained Lustbader. “We are available when that
is appropriate, and we leverage our technology to have physician expertise
overseeing the registered nurses.” She emphasized this is a patient- and
family-centered, nurse-driven model of care.
She sees ProHEALTH Care Support’s main job as one of treating people
with serious or advanced illness at home and tending to the family caregiver.
When she first joined the company 1 year ago, she added a caregiver
assessment to the electronic medical record (EMR) that it uses because there
was no place in the EMR to assess the 90-year-old wife taking care of the
95-year-old husband, she explained. The team works with the patient’s
other physicians or provides total care to the patient, particularly regarding
expert pain and symptom management, and it helps patients and families
with advance care planning and facilitates hospice enrollment when appropriate
through skilled conversations about serious illness.
Each team, or pod, comprises 3 registered nurses, 1 social worker, and
1 physician working with approximately 200 patients, or 1 registered nurse
per 70 to 90 patients. Lustbader explained that she goes to great lengths
to select the right nurses, several of which are certified hospice nurses.
“They love this sort of work,” said Lustbader. ProHEALTH Care Support
collaborates with local hospice and home health agencies, as well as with
ProHEALTH Urgent Care and community paramedics. It makes heavy use
of virtual visits to leverage physician expertise and provide around-theclock
availability.
As an example of the type of collaboration that ProHEALTH Care
Support engages in, Lustbader discussed the case of a homebound patient
with cellulitis in his legs. Instead of having to bring him into the hospital,
his team arranged for him to be taken by ambulance to the interventional
radiologist, who placed a peripherally inserted central catheter line for the
administration of medication and sent him home. The ProHEALTH Care
Support team was then able to administer intravenous antibiotics at the
patient’s home for 6 weeks. Lustbader noted their program has been garnering
support from community paramedics who are interested in not bringing
people who are terminally ill and would rather be at home to the hospital.
Working with community paramedics, ProHEALTH Care Support has been
able to develop a protocol for resuscitating, treating, and releasing patients in
their homes. As an example, she recounted a case where an 87-year-old man
with dementia, diarrhea, and dehydration called ProHEALTH Care Support
at 9 p.m. because he was dizzy. In a virtual visit that included the responding
paramedic, Lustbader was able to order 2 liters of intravenous saline, and
by 11 p.m. the man was tucked safely in bed. She noted that it is often much
safer to protect people from hospitalization, and keep them at home.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
78 HEALTH LITERACY AND PALLIATIVE CARE
Currently ProHEALTH Care Support’s parent organization, ProHEALTH
Care Associates, sees 800,000 patients in the New York metropolitan area,
including all of Long Island. She noted that there are no hospitals in this
health system, just 32 urgent care centers, ambulatory surgery centers,
260 outpatient clinics, and ProHEALTH Care Support. She explained that
ProHEALTH
Care Support is targeting the 2 percent of patients that most
concern payers in a Medicare Advantage risk-based payment world. The
average spend of this top 2 percent is more than $109,000 per year per beneficiary,
compared to an average beneficiary spend of $9,100 per year. “We
are able to negotiate with payers for a per member per month rate to pay
for home-based palliative care,” said Lustbader. “We don’t have to worry
about billing because we are getting paid a fixed rate every month to cover
this kind of care.” Her program also has eight shared savings programs that
will bring in revenues if it can deliver better care more efficiently as measured
by reduced hospital admissions and emergency room visits and increased
hospice use. In addition, ProHEALTH Care Support receives a small amount
of revenue from the limited fee-for-service billing that exists for this type of
home-based, high-touch care, though this fee comes nowhere close to covering
the cost of the services provided.
Because ProHEALTH Care Support is in a Medicare shared savings
accountable care organization (ACO), it is able to get raw claims data from
Medicare. This enables it to find the sickest patients who can most benefit
from the program. The results from its first 92 clients show that there was a
50 percent reduction in 90-day spend following enrollment in ProHEALTH
Care Support, and a 19 percent reduction in emergency department visits
postenrollment. In addition, 92 percent of the patients who died were able
to die at home, rather than a hospital setting. “We are in a geographic
area where dying at home is very unusual,” said Lustbader. “To have a
92 percent at-home death rate is extremely good, and it is a result of our
high-touch model. We normalize dying. We don’t medicalize it.”
Lustbader concluded her presentation by noting there are five elements
to making a home-based palliative care program work well. It must be
family-
and patient-centered, and intervention dosing is key. Some patients,
for example, are seen once per month, others three times per week. Some
need a nurse, others a doctor, she explained. “We dose the intervention
based on need, and since we are not a billing machine, we are not doing
this in a fee-for-service model,” said Lustbader. Providing around-the-clock
coverage through phone consultation and virtual visits is important, and
Lustbader said that most of the questions that come in late at night are
appropriate. “We want to hear what family caregivers are worried about,”
she said, adding that her staff reviews all of the questions that come in
overnight to see how they could do a better job preparing family members
for what happened late the night before. The last key component is to form
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 79
innovative partnerships. “We try to form new partnerships as we break
down health care silos,” said Lustbader.
HELPING PATIENTS NAVIGATE DIFFICULT DECISIONS
IN THE HOSPITAL3
San Francisco General Hospital and Trauma Center, the place where
Anne Kinderman works, is a level I trauma center for the county that cares
for anyone at any socioeconomic level in a serious accident. As a result,
Kinderman, as a palliative care provider, sees people from the whole spectrum
of San Francisco, and even the world, recalling some of the Asian
patients she saw who were in an airplane that crashed at San Francisco
International Airport. San Francisco General Hospital is also the safety net
hospital for the city, providing 80 percent of all charity care in the city and
treating a disproportionate number of uninsured and Medicaid patients,
with minimal numbers of patients with commercial insurance. It is also the
second most ethnically diverse U.S. medical center—in any given month,
140 languages are spoken on the campus.
A large proportion of the immigrants treated at San Francisco General
have limited English proficiency, education, literacy, and contact with the
medical system, and for many, the U.S. medical system is foreign in terms of
how patients interact with health care providers and the way care is compensated.
She and her colleagues also see a large number of socially isolated
marginalized patients who suffer from mental illness and substance abuse,
have limited social supports, are homeless or marginally housed, have limited
coping strategies and contact with primary medical and mental health
care, are more frequent users of emergency services, and have shortened
life expectancies.
What is known about advance care planning in vulnerable patient
populations such as these is that low health literacy is associated with less
advance directive completion and less certainty about choices, even with
targeted interventions, according to research conducted with patients in San
Francisco General’s general medicine clinic (Sudore and Schillinger, 2009;
Sudore et al., 2010). Latinos and Asians in particular are less certain than
Caucasians in choosing their wishes in advance (Waite et al., 2013).
Too often, said Kinderman, providers have the discussion about what
patients want at a time when their conditions worsen acutely. The problem
is, that is a time when information becomes harder to process and patients
3 This section is based on the presentation by Anne Kinderman, Director of the Supportive
and Palliative Care Service at San Francisco General Hospital and Assistant Clinical Professor
of Medicine at the University of California, San Francisco, and the statements are not endorsed
or verified by the Academies.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
80 HEALTH LITERACY AND PALLIATIVE CARE
may have a limited understanding of the implications of the choices they
are making in the acute setting and at a time when providers are asking for
life-and-death decisions with urgency. “This is a tough situation for anyone,
but particularly for those who are starting with low health literacy,” said
Kinderman.
When seriously ill patients are hospitalized, they experience a culture
that is foreign to most people. “We as medical providers forget how
foreign the hospital culture is to normal people,” said Kinderman. This
is particularly true, she added, for the population of patients she sees at
San Francisco
General. Almost weekly she hears from one of her Chinese
American patients that she is taking too much blood, referring to the
morning blood draw for laboratory tests. Patients whose primary coping
strategy outside of the hospital is to chain smoke suddenly has a nicotine
patch instead, in addition to a horrific diagnosis, and all they want to do is
go outside for a smoke. In addition, people in the hospital are often disconnected
from primary care and other trusted providers in the community,
and they face multiple communication barriers, often because of language
barriers. Kinderman noted that the check-in desk at the radiology department
has a sign in multiple languages informing patients of their right to
have an interpreter present, but the type on the sign is so small that it is
unreadable even at a distance of 2 feet.
Other factors that cause confusion in the hospital setting arise from the
way physicians interact with patients. Too often, as other speakers have
noted, physicians present too much information and they use too much
jargon. Patients can be overwhelmed, too, by information from multiple
providers, some of which may conflict with the information they get from
other sources. Conversations with providers often focus on treatment decisions
rather than values, and then when the end of life is near, providers
turn over responsibility for decision making to the patient or a surrogate
under the guise of helping patients be autonomous and in control of their
lives.
These factors combine to produce a great deal of conflict, said
Kinderman.
From the provider’s perspective, the patient who has low health
literacy and is facing life-and-death decisions may come across as quiet or
disengaged, ambivalent or confused about their choices because they cannot
recall the information dumped on them at an earlier encounter. Rather
than dragging their feet about completing advance directives, patients may
merely be overwhelmed. From the patient perspective, providers can come
across as impatient or applying pressure about different decisions. Providers
may seem redundant, repeating the same information again and again, and
uncomfortable dealing with patients.
Addressing health literacy in the hospital, said Kinderman, entails a
number of communication techniques that optimize conditions and provide
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 81
support for decision making and advance care planning. With patients of
limited English proficiency, it is imperative to have a professional translator
present at the time of a discussion and to pay attention to the vocabulary
the patient uses. The interpreter can help with this assessment. It is important
to address the impact of culture and beliefs on decision making and
care preferences, and to empathize and validate a patient’s concern rather
than being antagonistic about it. It is also important to address communication
barriers that patients face when voicing their needs in the hospital.
As an example, Kinderman cited the case of a Cantonese-speaking woman
who does not speak English and is in pain. How does she communicate
that she needs pain medication if there is no interpreter on the floor then?
Reiterating what previous speakers had said, it is important in verbal
communication to present information in small amounts, check regularly
for understanding, avoid jargon and euphemisms, organize provider input
so it is consistent and does not cause confusion, and keep patient values
in mind. Presenting information in written form can improve communications.
Pictures and diagrams can be helpful, but any written material should
be available in multiple languages (see Figure 6-1). Patients also need time
to review any materials or to have an interpreter read them and review
them with the patient.
It is important, said Kinderman, to optimize cognition. Reviewing
medications can help make sure patients are not disoriented because of the
medication side effects. Ensuring patients have their glasses and hearing
aids available is essential when presenting important information, and it
can be helpful to have families present but to also control the conversation
so people are not talking over one another. Optimizing the patient’s
environment by getting the patient on a normal day-and-night schedule can
also help improve comprehension.
To support decision making and advance care planning, Kinderman
recommended involving surrogates, family members, and other caregivers,
as well as trusted providers. It is common, she said, for her socially marginalized
patients to bring case managers or other trusted community members
to appointments. Also, given how uncertain her patients are about completing
advance directives, it has proven important to assess the patients’
interests and let them have their way on those, even if they will never fill out
an advance directive or a Physician’s Orders for Life-Sustaining Treatment
(POLST). She did refer, though, to the California Advance Health Directive
developed for patients with low health literacy (see Figure 6-2).
Kinderman concluded her presentation talking about some of the quality
improvement initiatives at San Francisco General Hospital. One such
effort has focused on providing information to family members about
what happens after a patient dies, and to help answer the many questions
families have at that moment, the hospital developed a brochure, availCopyright
© National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
82
FIGURE 6-1 Two examples of health literate, written information available at San Francisco General Hospital.
SOURCE: Presented by Anne Kinderman on July 9, 2015.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 83
able in Chinese,
English, and Spanish, that is handed out immediately
after a patient dies (see Figure 6-3). Another project developed cue cards
with words and pictures that communicate basic needs and concerns for
patients with limited English proficiency (see Figure 6-4). Kinderman, collaborating
with colleague Alicia Fernandez, also developed a curriculum for
interpreters in palliative care that is designed to help professional health
care interpreters negotiate these difficult conversations among patients,
families, and health care providers. The materials for this 8-hour training
course are available free at www.chcf.org/interpreting. On-demand access
to the curriculum for individual interpreters is available for a small fee at
learn.hcin.org.
Kinderman said she has learned several lessons from her work at San
Francisco General. “We expect a great deal from our patients in navigating
FIGURE 6-2 Instructions for California’s low health literacy advance directive
form.
SOURCE: Presented by Anne Kinderman on July 9, 2015.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
84 HEALTH LITERACY AND PALLIATIVE CARE
the health care system, so pacing of how we share information is critical,”
she said. It is important, too, to consider the patient’s emotional readiness
to receive information, to adapt communication styles and materials to
accommodate the ability of patients to understand and assimilate medical
information, and to bring in allies from both the patient and provider side
to help with the task of communicating with patients of low health literacy.
A FAITH-BASED MOVEMENT TO
TRANSFORM HEALTH DISPARITIES4
Tyrone Pitts began the workshop’s final presentation with the story of
a man who insisted he was ill. After many years, he went to his family and
4 This section is based on the presentation by Reverend Tyrone Pitts, co-chair of the Interfaith
and Diversity Workgroup at the Coalition to Transform Advanced Care, Ecumenical
Officer and General Secretary Emeritus of the Progressive National Baptist Convention, and
President and Chief Executive Officer of Bridges International LLC, and the statements are
not endorsed or verified by the Academies.
FIGURE 6-3 Brochure for family members of patients who have died.
SOURCE: Presented by Anne Kinderman on July 9, 2015.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 85
FIGURE 6-4 Cue cards for patients with limited English proficiency.
SOURCE: Presented by Anne Kinderman on July 9, 2015.
his family decided he should see a doctor, and they made an appointment
for him. He had a physical examination and was found to be in perfect
health. Several years later, he died, but before he died he had his tombstone
engraved to read, “I told you I was sick.” This story, said Pitts, highlights
the reality that individuals who deal with issues of palliative care and
advance directive face. This man insisted that he was sick, but his family
did not believe him. He experienced symptoms that his caregivers, those
who loved him most, dismissed, perhaps because they thought he was a
hypochondriac or because they thought he was suffering from Alzheimer’s
or some other mental disorder. There also was a gap between the symptoms
he experienced, the tests that were administered, and the diagnosis provided
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
86 HEALTH LITERACY AND PALLIATIVE CARE
by his doctors. Perhaps he was poor and did not have adequate health
insurance, or perhaps there was a gap in his communication system where
he communicated or did not communicate his symptoms adequately, which
is often the case with people whose first language is not English and lowincome
individuals who do not speak the same medical language as their
health providers. This story also provides an example of a person of faith
who was determined to have the last word, Pitts added, noting the message
he had carved on his tombstone. “It highlights the need for trust between
person, his family, and health professionals, and illustrates the complexity
of communication with people with advanced illness,” said Pitts.
Noting that people often do not receive the care they want and need
during advanced illness, Pitts cited the Institute of Medicine report Dying in
America: Improving Quality and Honoring Individual Preferences Near the
End of Life (IOM, 2014, p. 40) to point out what is needed to close this gap:
Broad engagement of actors in the health care field, social and supporting
services sector, as well as the organizations and institutions on which
Americans rely for practical assistance, spiritual support, information,
and advice.
The Coalition to Transform Advanced Care (C-TAC) was formed to
close the gap between what people want and what they get in advanced illness.
C-TAC’s vision, explained Pitts, is that all Americans with advanced
illness, especially the sickest and most vulnerable, receive comprehensive,
high-quality, person- and family-centered care that is consistent with their
goals and values and honors their dignity. Powering that vision are more
than 120 organizations and leaders who work to empower consumers,
change the health care delivery system, improve public and private policies,
and enhance provider capacity. He noted when he joined C-TAC 4 years
ago, he thought its mission was crazy. “The audacity of a group of individuals
saying that they were going to transform advance care in U.S. society
is unheard of,” said Pitts. “And yet after being at C-TAC for 4 years, it has
become clear that there is a movement afoot unlike any other movement in
this nation. A cultural change is happening where individuals and groups
of networks across this country are coming together to deal with this issue
of palliative care and hospice and advanced care.” This effort, he added, is
built on one simple word: trust.
One of the challenges the medical profession faces is how to deal with
diversity and race and how to help the most vulnerable members of society.
In the African American community, trust of the medical community has
been a problem for years because of a history of inappropriate actions,
such as the Tuskegee experiments. Pitts then cited something that Albert
Einstein said, which is that no problem can be solved from the same level
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 87
of consciousness that created the problem. Einstein is also noted for defining
insanity as “doing the same thing the same way, again and again, and
expecting different results.” C-TAC, he explained, is focusing on building
bridges and making connections where none now exist.
One thing that C-TAC has found in faith communities is that clergy,
imams, rabbis, and other people of faith are the connecting links between
people who suffer from serious illness and palliative care, hospice, and
advanced care. “It is the clergy and faith leaders who encourage them
to seek these avenues of care,” said Pitts. Fewer Americans are going to
church, he noted, but whenever they have a crisis or are sick, they call their
religious leaders.
A series of listening sessions that C-TAC held in 2014 with community
members, caregivers, and members of the clinical community identified a
key question: Even if you have a seat at the table, do you have a say in the
care for your community as part of the health system? The problem, said
Pitts, is that there are many people who have seats at the table, but they do
not have a voice at the table and they are not empowered to participate at
the table. High-level findings from the listening sessions included
• There are latent, underused resources that are not well linked
between communities and providers.
• Systematic linkages that integrate clinical and community models
would yield outcomes aligned with patient goals, such as reducing
unwanted hospitalizations.
• American Africans identified their faith-based organization (FBO)
as a trusted resource.
• FBOs need training and partners to serve as a link between the
health system and the community.
In response to the messages heard in the listening sessions, C-TAC
launched a Community Action Project with health systems and community
organizations around the country, including pilot projects in Alameda
County in California, Detroit, the District of Columbia, and Rhode Island.
Each of these pilot projects, explained Pitts, is bringing together health
plans, health organizations, and community members, including clergy
and other navigators, with the objectives of fostering partnerships between
health systems and faith community organizations to fill critical gaps in care
delivery, give each partner tools and knowledge, and help extend existing
advanced illness management programs to reach underserved people.
So far, said Pitts, six practical insights have come from these pilots:
1. Advanced illness is already a priority in churches, and every church
that was engaged in a pilot program had an intricate network of
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
88 HEALTH LITERACY AND PALLIATIVE CARE
individuals working on this issue. The challenge is connecting these
networks with the health system and health plans in a way that is
collaborative and respects the community.
2. Language is important; clergy refers to patients and persons, and
talk about healing instead of curing, the vulnerable instead of the
sickest of the sick, the beginning of life instead of the end of life.
These are not just Christian, Buddhist, Muslim, or traditional
African
concepts but universal to all humanity.
3. It is about the money, but it is not about the money, meaning that
there is a need for financial support, but people in these communities
are perishing for lack of basic aid and services.
4. Like health systems, churches and communities have their own
systems, so it is important to engage the community, not just one
partner or one church, and to understand the dynamics of the entities
within the community.
5. This is an intergenerational issue, where grandparents are caring
for grandchildren and vice versa.
6. Ultimately, shared decision making is based on the South African
principle of Ubuntu, or the interconnectivity that says “I am
because community is, and community is because I am part of the
community.”
Historically, said Pitts, health and healing went together for places of
worship, and the opportunity exists to rekindle that connection to the benefit
of the most vulnerable in society. He ended his presentation with the
comment that this is not a financial issue, but one of capacity and working
together. The problem, he said, lies in the disconnection between what faith
communities are doing and what health care systems are doing. “No one
can do this on their own,” said Pitts. “The good thing is, no one has to.”
DISCUSSION
Grant asked Pinderhughes to elaborate on what she meant when she
used the expression teach-back. Pinderhughes replied that teach-back is
a procedure used to engage patients around their understanding of their
conditions. It involves asking them to recount what they heard regarding
instructions for their care once they leave the hospital or clinic. One
approach is to ask patients how they would explain to family members how
they are supposed to take their medications. “It is about engaging patients
daily through the course of their hospitalization so when they leave they
demonstrate a true understanding of the consequences of not taking the
medication or not participating in a particular treatment and being able to
describe that to others,” explained Pinderhughes. Grant commented that
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Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 89
having the patient give information back in a different context instead of
just repeating it verbatim was a good approach.
Noting the importance of community voice and participation that Pitts
highlighted, Winston Wong asked the panelists how their institutions actively
engage community in discussions of how advance care needs to change.
Lustbader replied that because her program is not affiliated with a hospital,
she and her colleagues have even more incentive to go into the community
and bring in community volunteers, massage therapists, and Reiki therapists.
They have also begun meeting with local church groups and temples and
conducting workshops with the Bikur Cholim, the Jewish
organization that
visits sick people in the hospital, to give them ideas on how they can help
those with chronic conditions who receive care at home. “We are starting to
try to give these community groups more ideas of how they could be helpful,
because I believe many of them would like to be helpful, they just don’t know
how,” said Lustbader. She noted that she and her colleagues have had good
success over the past 6 months engaging the temples on Long Island to rally
around the critically ill in their communities, Jewish or not.
Pinderhughes said that Banner Health has just started working with
various community organizations, particularly senior centers that already
have connections with and provide services to the elderly who need help.
Kinderman admitted that San Francisco General currently does a terrible
job of involving patients in planning. “It is more convenient and easier for
us to come up with a solution and then impose it on people,” she said. “It
does not work well, particularly when talking about advance care planning.
The best example of engaging the community, she said, was the communitywide
task force on palliative care that was created in the summer of 2014.
The task force was broad based, she noted, and the majority of its members
were representatives from community organizations, with some representatives
from palliative care providers and hospitals.
Pitts described two models for community involvement that he believes
have been successful. In what he called the Tennessee model, hospitals have
brought in navigators from churches to serve as the link to their communities.
The C-TAC model starts in the community, where there is disjointed
expertise, and brings in the hospitals to provide help in how to be organized
and use that expertise most effectively. In Oakland, for example, the community
and Kaiser Permanente have become equal partners in the process of
changing how palliative care is provided, with the University of California,
Davis, now conducting an evaluation of this program. Pitts explained that
the Oakland project was designed to build a relationship between the clinical
community and the larger community, and it started with one pharmacist
and one surgeon getting involved with the community.
Cindy Brach said that one of the struggles in delivering the right care
at the right time and the right place is developing a payment system that
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Health Literacy and Palliative Care: Workshop Summary
90 HEALTH LITERACY AND PALLIATIVE CARE
rewards those providing services. Traditionally, she said, money has not
followed the individual through the system of care but instead it has stayed
in the emergency department or the hospital. She asked Pinderhughes and
Lustbader if they are beginning to show that the services they provide are
producing savings that offset the costs of those services, and if they had
ideas on how she and her colleagues at the Agency for Healthcare Research
and Quality might think about measures of quality for those services given
that there is the unfortunate financial incentive to stint on care or engage
in gate keeping to reduce financial risk.
Lustbader replied that ProHEALTH Care Associates has relations with
payers to deliver home-based palliative care for a per member per month
rate and that there are several metrics they must meet, including admissions
per thousand members. For that metric, Lustbader looks at preventing
avoidable hospital admissions because most of the family members do
not want to go to the emergency department in the middle of the night
with their 87-year-old parent or spouse. She noted that admissions per
thousand members is both a quality and cost metric. A second metric is
location of death in the patient’s preferred location, which is most often at
home. ProHEALTH
Care Associates meets that goal more than 90 percent
of the time, she said. Lustbader noted that ProHEALTH Care Associates is
developing a first-of-its-kind survey that will enable the patients in its program
to rate how well they are doing on pain and symptom management
and quality of life, and give caregivers the opportunity to weigh in on the
burdens they face and any surprises they encountered.
As she noted in her presentation, Lustbader was able to convince
payers
to not use a metric for MOLST completion because it is not a good
metric for the population her organization serves. “We took that metric
out because we are at the table and we have a voice,” said Lustbader. “It is
important the people in this room are sitting at the table as the metrics for
these arrangements are outlined because we are the ones doing the work
and know what to measure.” As an example, one payer in a shared savings
program wanted to include a metric that everyone discharged from a
hospital has a follow-up appointment at the doctor’s office within 30 days.
She argued successfully that if a patient has a bone fracture that the orthopedist
has repaired, there is little value in having that patient return to the
primary care physician in 30 days. A better metric in that case might be that
a medically complex person who is discharged should receive a follow-up
phone call within 72 hours and touch therapy within 7 days.
Pinderhughes said that Banner Health is still trying to work out payment
arrangements and metrics for its home-based program. For the patients
who are members of the Banner Health Network, her service has negotiated
a per member per month rate. For metrics, she and her colleagues are
looking at completion rates for advance care directives, symptoms in opioid
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Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 91
and bowel regimens, satisfaction scores, and the percentage of patients that
transition into hospice and how long they stay on hospice.
Michael Paasche-Orlow asked if health ministries—a recognized team
of people who sponsor regular educational events and experiences that
promote well-being—can serve as a vector for health literacy work in the
palliative care and advance care areas. Pitts said that most faith-based
groups have health care ministries and that C-TAC’s model involves, in part,
connecting those ministries to the larger health care system. He noted that
different faiths have different models for how those health ministries work
with the community and the health care system. African American churches,
for example, work in hospitals and with individuals who are homebound.
Churches that belong to the National Council of Churches have very structured
health ministries that belong to a national health ministry network,
said Pitts, and the Jewish community has its own unique system for dealing
with palliative and hospice care. However, Pitts added, health ministries in
other interfaith groups, such as the Bahá’í and African traditional religious
groups, are not well connected to the larger community.
Richard Freeman said the challenge is twofold. In his tradition, there
is the story of the Good Samaritan, and while the members of his congregation
may act like the Good Samaritan, they forget the part about being
transformers so the Jericho Road ceases to exist. The Jewish community,
he said, has access and the power to make transformational changes more
immediately that many of the congregations he works with on matters of
social justice lack. What has to happen, he said, is all communities of faith
must take an active role in first handling the crisis and then be transformative,
which goes right to the heart of the literacy conversation.
Grant noted that in her work as a palliative care nurse practitioner,
she has had many amazing experiences in which clergy addressed health
literacy issues. In one case, she had a meeting with an African American
family that was having a hard time making a decision about whether to
provide total parenteral nutrition (TPN) to their loved one, which is an
emotional and value-based conversation. The pastor spoke to the family
about their church’s tradition of fasting, something Grant said she would
have never thought of, and in that context the family was able to come to a
better understanding of what would be appropriate in this case. In another
example, a pastor to an uneducated family from Appalachia served as a
translator of sorts, explaining technical words and concepts in a way that
they could understand and believe because he was so trusted. She said she
often asks families if they are part of a faith-based community because
in many cases, clergy have a credibility and relationship that health care
providers will never have with their patients. “When you are talking about
discussing life-and-death advance directive decisions, we are the wrong
people to have that conversation,” said Grant. “If you are a person of faith,
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Health Literacy and Palliative Care: Workshop Summary
92 HEALTH LITERACY AND PALLIATIVE CARE
you have a community that has a point of view on those subjects, and that
is the group that is most appropriate to at least consult.”
Ernestine Willis from the Medical College of Wisconsin asked Pitts if
he had any thoughts on how to overcome the distrust of the medical system
that exists in many underresourced communities, including communities of
color and many rural communities. Addressing that mistrust, said Pitts, is
one of the major areas of focus for C-TAC, and the organization is tackling
it in several ways. One is to develop relationships, a critically important
step that explains why Ubuntu is so important to C-TAC’s efforts. He
recounted a story of when C-TAC first started working in Alameda County
that illustrated the importance of building relationships. A foundation
challenged C-TAC to hold a meeting of clergy and they set up the meeting
by opening the Yellow Pages and calling all of the churches listed there.
Nobody showed up for the meeting. The people who started C-TAC’s pilot
instead began working with those in the community that they knew and
with whom there was already a relationship and trust and from there built
a network that extended throughout the community. They also brought in
health partners that had already built trusted relationships with the community,
and because there was a shared trust with C-TAC as the bridge, these
two groups began to have a dialog and the Alameda County Community
Action Project was born.
One of the lessons this program learned regarding trust was that some
of the health care organizations in the county were including pastors at the
table but only allowing them to make general comments. “They were not
included in these institutions’ decision-making process,” said Pitts. Another
observation was that there were people in the institutions who did not
look like those they were servicing, and so C-TAC has begun to talk about
diversity within the institutional structures that are ministering to people.
“The health profession is not a service, it is a ministry,” said Pitts, and in
that regard, health care institutions need to begin a dialog with clergy and
others in the community to talk about issues of language, health literacy,
and need, and to build programs that are beneficial to all. In the long run,
he added, this will save money and it will save lives. “The reality is if you
have fewer people going to the emergency department and better services
and more community support that leads to community transformation,
what you are doing is not only saving money but saving lives,” said Pitts.
Commenting as an African American clinician, Pinderhughes said, “We
talk about the mistrust patients have, but in reality the system has been
inherently untrustworthy to these individuals for years. There is a history
of systemic inequality and lack of access to care that is not a problem of the
African American patient or the Latino patient. It is a problem of institutional
racism in America.” In her opinion, clinicians need to acknowledge
what she called the elephant in the room—the inequity that exits, the lack
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Health Literacy and Palliative Care: Workshop Summary
HEALTH LITERACY IN PALLIATIVE CARE PROGRAMS 93
of fairness, the lack of trust—and then go forward. “I cannot fix what has
happened, but I can fix what is happening now. I can partner with patients
and align around where their values are,” she said.
As a closing comment to the discussion, Freeman applauded
Pinderhughes’s
personal approach to addressing inequities and then asked
his white colleagues to challenge themselves to address implicit bias, to ask
themselves to think about the baggage they bring to the table. “Do I see
every African American patient as disadvantaged?” he said. “Let’s ask those
questions and be honest with our answers.”
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
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Health Literacy and Palliative Care: Workshop Summary
95
To end the workshop, Bernard Rosof asked the Roundtable members
for their reflections on the main points they heard during the workshop.
Michael Villaire from the Institute for Healthcare Advancement
remarked that the health literacy component of the day’s discussions
was not as robust as he would have liked, which he thought was a result
of the large chasm that exists today between palliative care and health
literacy and the many steps that will have to be taken to marry these two
fields. The first step, he said, is to increase awareness of palliative care and
what it is. “Before you can understand it, you have to know that it exists,”
said Villaire. Another step has to be overcoming what he called “the odd
culture around death in this country” that makes it such a difficult subject
to broach. Another challenge arises from the number of people who
have never had health care that now have coverage under the Affordable
Care Act and who are even further behind in terms of health literacy and
understanding what palliative care is. There also is the issue of access to
palliative care and addressing the social justice component of palliative
care, he added.
In contrast to Villaire, Cindy Brach was not troubled by the fact that
many of the speakers did not use the words health literacy in their presentations.
To her, the presentations and discussion spoke to the part of
health literacy that has to do with reducing demands on patients around
navigating the health care system and coordinating care, as well as with
addressing the matter of comprehension under difficult circumstances. “The
model of care that we imagine for people with advanced illness is a health
literate model,” she said. Brach then noted that her agency, the Agency for
7
Reflections on the Workshop
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Health Literacy and Palliative Care: Workshop Summary
96 HEALTH LITERACY AND PALLIATIVE CARE
Healthcare Research and Quality, works on error reporting and patient
safety, and to her the difficulties that Beverly Alves recounted—the failure
of the do-not-resuscitate order to be in the system, the delays in getting
medications at the hospital, the need to continually renew the prescription
for pain medication—are errors that should be collected and recorded and
counted as failures in the effort to create a culture of safety in the nation’s
health care organizations. In her opinion, part of the culture shift that
needs to occur is to embrace these kinds of errors and work to correct and
prevent them. Brach also said she agreed with Robert Arnold’s view that
palliative care should not be a distinct concept, that it is really about good
health care quality.
Margaret Loveland emphasized the need for training physicians in the
art of communicating about end-of-life issues with patients and families,
given how hard they are to have at times of crisis. Part of that training,
she added, should include how to work as part of a health care
team, and another component should emphasize the need to acknowledge
that patients have a spiritual life. Winston Wong said that he believes that
the roles of language and culture are most accentuated at the sentinel
moments of life, such as birth, marriage, and death. “I think all the aspects
around how to communicate effectively become distilled at those critical
moments,” said Wong.
He also noted that there is a political component that needs to be
acknowledged regarding discussions about palliative care, as illustrated
by the opportunistic use of the term death panels several years ago to
sway public opinion. “There is a point where we have to make sure that
people throughout our communities really understand the nature of these
conversations and that there is no deviant way to frame these discussions,”
said Wong. “If we agree on what the nature of those discussions are, we
will have made a contribution toward improving health and medicine,
and dying and living, for people throughout our communities.” Wilma
Alvarado-Little agreed with that statement and the importance of recognizing
the political component of discussions about palliative care.
Marin Allen from the Office of the Director of the National Institutes
of Health voiced her concern that health literacy is thought of as a tactic
mentioned along with education, rather than an integral part of the interaction
between patient and the health care team, and that treating it as
such will not provide the necessary cross-pollination across medical fields.
She then added two footnotes. The first concerned the use of interpreters
for deaf individuals and their need to be comfortable interpreting medical
information for the patient. “It is really the patient that needs to be
comfortable with the reputation and language use of the interpreter in deaf
settings,” explained Allen. Alvarado-Little, who occasionally serves as a
spoken language interpreter, added that much of the information given to
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Health Literacy and Palliative Care: Workshop Summary
REFLECTIONS ON THE WORKSHOP 97
patients and family members is highly nuanced and that cultural issues play
an important role at the intersection of health literacy and palliative care.
Allen’s second footnote was on the use of teach-back. She recommended
the work of Dean Schillinger at the University of California, San
Francisco, who has developed a system that is easy for physicians to use
based on the larger communication strategy of feedback (Schenker et al.,
2011). In response to a comment from Rosof, Allen said that using the
word person instead of patient was a good idea.
Terri Ann Parnell from Health Literacy Partners remarked that the
presentations far exceeded her expectations, and she thought incorporating
the thoughts of both the family and the spiritual community broadens the
spectrum of the Roundtable’s work. One of the strong points for her was
the value of having health care providers taking time for self-reflection and
looking for unconscious bias that enters into conversations with patients.
Robert Logan from the National Library of Medicine noted that several of
the presentations argued convincingly that home visitation and community
settings provide enormous opportunities to deliver and assess health literacy
interventions. He also was impressed with the work showing how home
visitation affects health and wellness, quality of life, and health outcomes.
From her perspective as a nurse scientist who does informatics research,
Suzanne Bakken from Columbia University commented on the gaps that
exist in the technological support that could help with clinical decision
making and helping consumers better understand the decisions they face.
Alicia Fernandez from San Francisco General Hospital and the University
of California, San Francisco, commended the speakers and said she
valued the many examples of successful programs that were presented at
the workshop. At the same time, she was struck by how poorly prepared
the field is to grapple with the increasing fragmented system of care for
chronic disease that exists today and the fact that the burden for care is
shifting even further to patients and caretakers. Fernandez then made three
small comments about unintended consequences. The first was that while
palliative care undoubtedly improves care for individual patients, it may
at the same time lessen the involvement of the physician in care for those
patients. A second unintended consequence results from the fact that once
a patient is referred to hospice, insurance will not pay for the patient to go
back to the hospital. Perhaps this restriction will be removed as the system
begins paying for palliative services instead of hospice, she said. The third
unintended consequence is the increasing burden that palliative care can
place on caretakers with low health literacy.
The message that Kim Parson from Humana’s Innovation Center got
from the workshop is the need to remember that this is about the patient’s
and family’s journey, not that of the health care provider, and how important
it is to understand where patients are in their journey. This is parCopyright
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Health Literacy and Palliative Care: Workshop Summary
98 HEALTH LITERACY AND PALLIATIVE CARE
ticularly true, she said, for patients with chronic diseases and multiple
conditions that they may have been dealing with for years. She also commented
that cost transparency is an important issue for many patients
because they worry about the cost of care and the burden that might place
on their families and caregivers. Ruth Parker agreed that cost transparency
was important. Indeed, she said that there is a wonderful opportunity to
think about how to include discussions of cost in the conversation about
palliative care, both in terms of how to have that conversation with caregivers
as it relates to making choices about care options and with regard to
health care costs in the United States.
Laurie Myers from Merck & Co., Inc., noted the importance of recognizing
that everyone, regardless of their level of health literacy, knows
everything they need to know about their goals and values. The responsibility
for getting that information and using it to inform shared decision
making rests solely with the health care system. She also commented on
the importance of making sure that patients or family members not only
have a seat at the table but a voice at the table in team meetings, and that
the table should also have a place for pharmacists and medical assistants.
Myers seconded the idea that all doctors, nurses, pharmacists, and medical
assistants should be trained to use the same language, which she thought
could help decrease stress and anxiety among patients and caregivers, and
also voiced support for not only talking about pain medications but also
antianxiety medications. One question that she had was how to handle family
members who think their loved one is giving up when the patient comes
to understand and accept that additional treatment does not make sense.
Terry Davis from the Louisiana State University Health Sciences Center
in Shreveport wondered how patients get a consistent message when so
many people are involved in their care, including all of the members of their
families, their faith communities, and their social networks. “Are we talking
to each other? Are we using the same language” Are we giving conflicting
information?” asked Davis. Though the goal is to put the patient at the
center of care, the medical system does not always give them the power to
be the team leader and determine who gives them information and how
they receive it, which she thought would leave them feeling alone and overwhelmed.
Rosof noted a book by retired General Stanley McChrystal, Team
of Teams (McChrystal et al., 2015), deals with this issue of team leader in
a thoughtful, interesting manner.
Christopher Dezii from Bristol-Myers Squibb emphasized the need for
accountability, to follow through on all of the points that the speakers and
discussion raised so palliative care is at the table when discussing how to
create a patient-centered experience and develop performance and quality
measures. He suspected, for example, that the health care institutions that
Alves dealt with overall had high-quality grades, which suggests that the
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Health Literacy and Palliative Care: Workshop Summary
REFLECTIONS ON THE WORKSHOP 99
current measures of quality are unacceptable. “Are we okay with quality
as it is, or is the present situation unacceptable?” asked Dezii. “If it is
unacceptable,
then we have to set up the parameters to reflect that.”
Michael Paasche-Orlow commented how the topic of palliative care
exposes the cultural struggle that exists between those in health care who
care about communication and those who are at war against death. He also
remarked how political this topic is, how many social justice issues are at
stake, and how complex it is. “I think that is one of the reasons this is such
a great topic for the Roundtable on Health Literacy is because it is quite
complicated for patients and families, and we can help improve that situation,”
said Paasche-Orlow. He also noted the lack of data about palliative
care and in the end-of-life space in general.
Lindsey Robinson, a full-time pediatric dentist, appreciated the personal
stories and the input of the spiritual counselors. “Their voice reminds
us that at the end of the day we are tending to the broken hearts of human
beings.” She then commented on Diane Meier’s idea that integrative palliative
care is about creating a medical counterculture given that the current
system is not set up to work in a collaborative or integrated way. This is
particularly true, she said, of dentistry, which worked hard historically to
stay out of Medicare and remain separate from the health care system in
general. Dentistry, however, is slowly realizing the fault of that “do our
own thing” philosophy, and the fact that the American Dental Association
has funded her seat on the Roundtable shows the commitment of the
dental community to participating in culture change. She noted that oral
health plays a large part in overall health, particularly when it comes to
chemotherapy, which can produce severe oral health impacts, and she looks
forward to identifying opportunities for the dental community to work in
this space.
What struck Jennifer Dillaha is the great dysfunction that exists in the
health care system, which made her wonder whether the development of
palliative care as a discipline is really a response to the low health literacy
of the health care system. “It seems that it is a way to shepherd people
with advanced illness through the end of their life because the system’s
health literacy is so low,” she said. Catina O’Leary from Health Literacy
Missouri commented on how the issues presented at this workshop were
more deeply personal, political, and oriented to social justice than is usually
the case, and she commended the organizing committee for putting
this program together. In particular, she was excited by Richard Freeman’s
message of how important it is for this group to use its voice to drive change
so everyone has access to appropriate care, and by the involvement of community
members beyond just those with academic credentials who usually
participate in National Academies of Sciences, Engineering, and Medicine
roundtables.
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Health Literacy and Palliative Care: Workshop Summary
100 HEALTH LITERACY AND PALLIATIVE CARE
Steven Rush thanked everyone who presented and who organized this
workshop. In particular, he appreciated the focus on provider issues as
opposed to patient deficits and on the concept of patient-centered care as it
relates to health communication. He noted that he and Dana Lustbader
will be able to take the lessons from this workshop and apply them to the
work they are doing with the various advisory councils on which they serve.
Rosof then asked Freeman to make the final comment on the day.
Freeman said that he recognizes in the reality of humanity and everything
that he does that not everyone approaches life from a deist’s view,
and he truly honors that reality. Nonetheless, he wanted to close the workshop
by connecting everyone’s heart in a moment of prayer. “This is a
spiritual journey, and every one of you that do it are a spiritual being,”
said Freeman,
who asked everyone to look at themselves and say, “I am
spirit, and everything I do touches someone else’s spirit.” He then offered
a prayer:
“By all that is holy, whether we call you Elohim, whether we call you
God, whether we call you Yahweh, whether we call you Allah, whether we
call you the great spirit, by every name that we hold dear, we come to you
now to infuse us with your power. Give us the grace to walk with people
who are going through the valleys of the shadows of death. Help us to walk
with those who are in pain. Help us to reach out our hearts and our hands
to minister in the only way that we know how, how we have been trained.
But we also ask that you would challenge us, challenge us to grow to a
higher level, to a different place so that we can be even better in the journey
that we are in. Now, as we get ready to leave this place, as we go with some
fears, some learning, some trepidation, even some prodding, we ask that
you be gentle with our learning, be gentle with us as we become better at
what we do. We ask these things in your holy and righteous name. Amen.”
Rosof then adjourned the workshop.
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Health Literacy and Palliative Care: Workshop Summary
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102 HEALTH LITERACY AND PALLIATIVE CARE
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Health Literacy and Palliative Care: Workshop Summary
107
A
Workshop Agenda
Health Literacy and Palliative Care
Keck Building, Room 100
Washington, DC
July 9, 2015
OPEN SESSION
8:30–8:45 Welcome, Workshop Overview, Introduction of First
Speakers
Bernie Rosof, Roundtable Chair
8:45–9:05 Communication: Palliative Care’s Transformational
Procedure
Diane Meier
Director, Center to Advance Palliative Care
9:05–10:35 Panel: Interpersonal Communication
Diane Meier, Moderator
9:05–9:10 Introductions
9:10–9:25 Perspectives of a Patient’s Wife
Beverly Alves
Patient Advocate
9:25–9:40 Communicating Prognosis
Thomas J. Smith, M.D.
Director of Palliative Medicine, Johns Hopkins
Hospital
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Health Literacy and Palliative Care: Workshop Summary
108 HEALTH LITERACY AND PALLIATIVE CARE
9:40–9:55 Serious Illness Communication Program
Justin Sanders, M.D.
Research Fellow, Serious Illness Care Program,
Ariadne Labs
9:55–10:35 Discussion
10:35–10:50 BREAK
10:50–12:00 Panel: Professional Training
Renee McLeod-Sordjan, Moderator
10:50–10:55 Introductions
10:55–11:10 Physician Training
Robert Arnold, M.D.
Chief, Section of Palliative Care and Medical Ethics
Director, Institute for Doctor–Patient Communication
Medical Director, Palliative and Supportive Institute
University of Pittsburgh Medical Center (UPMC)
11:10–11:25 Health Literacy and Palliative Care: Nurse Training
Elaine Wittenberg, Ph.D.
Associate Professor, Nursing Research
City of Hope
11:25–12:00 Discussion
12:00–1:00 LUNCH
1:00–2:45 Panel: Integrated Care Teams
Yael Schenker, Moderator
1:00–1:05 Introductions
1:05–1:20 How to Bring Spiritual Care into Palliative Care
Rev. Richard Freeman, Sr.
Pastoral Team, UPMC Children’s Hospital
1:20–1:35 Family Caregiver Perspective
Carol Levine
Director, Families and Health Care Project
United Hospital Fund
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
APPENDIX A 109
1:35–1:50 Social Worker Perspective
John Cagle, Ph.D., M.S.W.
Assistant Professor,
University of Maryland School of Social Work
1:50–2:05 Nursing Perspective
Ginger Marshall, M.S.N., ACNP-BC, ACHPN, FPCN
National Director of Palliative Care, Hospice
Compassus
President Elect, Hospice & Palliative
Nurses Association
2:05–2:45 Discussion
2:45–3:00 BREAK
3:00–4:45 Panel: Programs
Marian Grant, Moderator
3:00–3:05 Introductions
3:05–3:20 Health System
Stacie Pinderhughes, M.D.
Chairperson, Division of Palliative Medicine
Banner Health
3:20–3:35 ProHEALTH Care Support: Advanced Illness Care for
People at Home
Dana Lustbader, M.D.
Chair, Department of Palliative Care
ProHEALTH Care Associates
3:35–3:50 Helping Patients Navigate Difficult Decisions in the
Hospital
Anne Kinderman, M.D.
Director, Supportive and Palliative Care Service
San Francisco General Hospital
3:50–4:05 Community-Based
Rev. Dr. Tyrone S. Pitts
Co-Chair, Interfaith and Diversity Workgroup
Coalition to Transform Advanced Care
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Health Literacy and Palliative Care: Workshop Summary
110 HEALTH LITERACY AND PALLIATIVE CARE
4:05–4:45 Discussion
4:45–5:30 Reflections on the Day
5:30 ADJOURN
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
111
Beverly Alves is a retired teacher from upstate New York. She spent most
of her career teaching special education in a rural school district and before
that she taught math in an inner-city school. Prior to becoming a teacher she
was a medical and psychiatric social worker in a large hospital in Newark,
New Jersey, and an antipoverty worker. Since her husband, Joe, died from
cancer in 2006, she has been an advocate for palliative care and equal
access to health care. She was on the steering committee for Single Payer
New York and the National Coalition Leadership Conference for Guaranteed
Health Care. She is currently on the organizing committee of the Jobs
for All Network and is also an advocate for public education.
Robert Arnold, M.D., focuses his research and educational activities on
teaching ethics to residents, improving doctor–patient communication
regarding palliative care, and changing the culture by developing educational
programs in specialties ranging from oncology to critical care
medicine. Dr. Arnold is currently developing a structured curriculum on
doctor–patient communication for fellows in critical care and trying to
better understand the barriers to communication. His clinical activities
focus on providing palliative care consults in a tertiary care hospital and
providing primary care to HIV-seropositive inpatients. He was the president
of the American Society of Bioethics and Humanities and of the American
Academy of Palliative and Hospice Medicine.
John Cagle, Ph.D., M.S.W., is an assistant professor at the University of
Maryland School of Social Work with a substantive interest in improving
B
Biographical Sketches of
Workshop Speakers and Moderators
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
112 HEALTH LITERACY AND PALLIATIVE CARE
care at the end of life. As a translational health services researcher, his
efforts have focused on identifying effective models of care and support
for dying patients and their families—and implementing those models into
routine clinical practice. This includes efforts to minimize financial burden
on families coping with life-threatening illness. His research is informed
by nearly a decade of clinical work as a hospice social worker. Dr. Cagle
completed his Ph.D. from Virginia Commonwealth University where his
dissertation thesis explored the needs and experiences of informal caregivers
of advanced cancer patients. After being awarded his doctoral degree
in 2008, he trained as a National Institute on Aging (NIA)-funded postdoctoral
fellow at the University of North Carolina at Chapel Hill Institute
on Aging as well as the University of California, San Francisco, Division of
Geriatrics. His current research examines financial burden experienced by
families during life-threatening illness, disparities in care at the end of life,
psychosocial barriers to pain management, and improving palliative care
outcomes in long-term care settings. His research has been supported by a
number of public and private entities, including the University of Maryland
School of Social Work Financial Social Work Initiative, the Hospice Foundation
of America, the National Palliative Care Research Center, the John
A. Hartford Foundation, the NIA, the Agency for Healthcare Research and
Quality, the National Hospice and Palliative Care Organization, and the
Foundation for End-of-Life Care.
Reverend Richard Freeman has been a bi-vocational servant throughout
his ministry. He has led the chaplain program at Children’s Hospital of
Pittsburgh for 16 years while concurrently serving as the Senior Pastor
of the Resurrection Baptist Church. Rev. Freeman’s ministerial passions
include teaching and marriage/family enrichment. He has taught in numerous
settings on various topics, including Old Testament and New Testament
Survey course, The Biblical Standard for Dating, and Building Marriages
That Will Last. Rev. Freeman has presented at numerous conference and
symposia on topics, including Caring for the Care Giver, Managing a
Multi-Generational Workforce, End of Life Care: A Holistic View and
How to Bring Spiritual Care to Palliative Care. He is part of a statewide
gubernatorial roundtable on public education. He is also president of the
Pennsylvania Interfaith Impact Network, a faith-based community organizing
organization; putting faith in action.
Marian Grant, D.N.P., R.N., CRNP, is a nurse practitioner dually certified
in Acute Care and Palliative Care/Hospice and an assistant professor at
the University of Maryland School of Nursing where she teaches courses
on communication, evidence-based practice, and end-of-life nursing. She
is also on the University of Maryland Medical Center’s Palliative Care
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
APPENDIX B 113
Service as a nurse practitioner. In 2014, Dr. Grant was named a Robert
Wood Johnson Foundation Health Policy Fellow. Dr. Grant is on the board
of the national Hospice & Palliative Nurses Association, is co-chair of the
Public Engagement Workgroup for the national Coalition to Transform
Advanced Care (C-TAC), and blogs monthly for the Journal of Palliative
Medicine. Her consistent focus is on raising clinician and public awareness
of palliative care and advocating for policy changes to make these services
more widely available. Before becoming a nurse, Dr. Grant studied mass
communication and worked in advertising and marketing for the Procter
& Gamble Company.
Anne Kinderman, M.D., is an Assistant Clinical Professor of Medicine at
the University of California, San Francisco (UCSF), and is the Director
of the Supportive and Palliative Care Service at San Francisco General
Hospital. After completing her Internal Medicine Residency at UCSF and
Hospice and Palliative Medicine Fellowship at Stanford, she returned to
San Francisco General in 2009 to help develop the Supportive and Palliative
Care Consult Service, as its founding Director. Dr. Kinderman’s scholarly
work has included developing a curriculum in palliative care interpreting
for professional medical interpreters, promoting high-quality care for vulnerable
patients with serious illness, and expanding palliative care services
in safety net health systems. Within the American Academy of Hospice and
Palliative Medicine, she helped to create and lead a special interest group
focused on the health care Safety Net, which advances collaboration and
scholarship among palliative care providers caring for vulnerable patients.
In 2014, she was Sojourns Scholars Leadership Award from the Cambia
Health Foundation, to support her development as a leader in Palliative
Care, and was subsequently named an Inspiring Leader Under 40 by the
American Academy of Hospice and Palliative Medicine.
Carol Levine directs the United Hospital Fund’s Families and Health Care
Project, which focuses on developing partnerships between health care professionals
and family caregivers, especially during transitions in health care
settings (www.nextstepincare.org). Before joining the Fund in 1996, she
directed the Citizens Commission on AIDS in New York City from 1987
to 1991, and The Orphan Project, which she founded, from 1991 to 1996.
As a senior staff associate of The Hastings Center, she edited the Hastings
Center Report. Ms. Levine is the editor of Always on Call: When Illness
Turns Families into Caregivers (2nd ed., Vanderbilt University Press, 2004);
co-editor, with Thomas H. Murray, of The Cultures of Caregiving: Conflict
and Common Ground Among Families, Health Professionals and Policy
Makers (Johns Hopkins University Press, 2004); and editor of Living in the
Land of Limbo: Fiction and Poetry About Family Caregiving (Vanderbilt
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
114 HEALTH LITERACY AND PALLIATIVE CARE
University Press, 2014). In 1993, Ms. Levine was awarded a MacArthur
Foundation Fellowship for her work in AIDS policy and ethics. She was
named a WebMD Health Hero in 2007. In 2009, Ms. Levine was named
a Purpose Prize fellow, an honor for social entrepreneurs over 60 who are
using their experience and passion to take on society’s biggest challenges.
Dana Lustbader, M.D., is Clinical Professor of Critical Care and Palliative
Medicine at Hofstra North Shore–Long Island Jewish (LIJ) School of
Medicine. She is Department Chair of Palliative Medicine at ProHEALTH
Care Associates, a large physician-run multispecialty group and accountable
care organization serving the New York metropolitan area. She created
and is the Medical Director of ProHEALTH Care Support, a home-based
advanced illness program providing medical care to people with serious illness
while supporting their family caregivers. Prior to joining ProHEALTH,
Dr. Lustbader worked at North Shore–LIJ where she was the Medical Intensive
Care Unit Director, Section Head of Palliative Medicine, and founding
Program Director of the Hospice and Palliative Medicine Fellowship. She
also served as the Assistant Medical Director for the New York Organ
Donor Network providing critical care consultation to intensive care units
for optimal donor management. Dr. Lustbader is board certified in critical
care medicine, internal medicine, and palliative medicine. She received her
medical degree from the University of Wisconsin–Madison School of Medicine,
Internal Medicine residency training at New York University Medical
Center, and fellowship in Critical Care Medicine at St. Vincent’s Hospital
in New York. Dr. Lustbader was a founding member of the Hospice and
Palliative Medicine Test Writing Committee for the American Board of
Internal Medicine.
Ginger Marshall, M.S.N., ACNP-BC, ACHPN, FPCN, earned her B.S.N.
from the University of Maryland and her M.S.N. from University of
Pennsylvania.
She served on the Board of Directors for the Hospice Palliative
Credentialing Center (HPCC) from 2007 to 2013, including her role as
President in 2010. She is currently serving on the Board of Directors for the
Hospice & Palliative Nurses Association in the role of president elect. She is
board certified in acute care by American Nurses Credentialing Center and
in hospice palliative care by HPCC. In 2011, she was inducted as a Palliative
Care Fellow by the Hospice & Palliative Nurses Association. Ms. Marshall
has served as the Director of Palliative Care for both the University of Utah
Hospital and Carolinas HealthCare System. She recently joined Compassus
in the role of National Director of Palliative Care.
Renee McLeod-Sordjan, D.N.P., is a nurse practitioner for the Department
of Medicine at North Shore–Long Island Jewish (LIJ) at Franklin and a
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
APPENDIX B 115
women’s health nurse practitioner in private practice. She is currently a Medical
Ethics Attending for the Department of Medicine in the North Shore–LIJ
Health System. Professor McLeod-Sordjan has been adjunct professor for
the graduate department of New York University. Presently she is clinical
assistant professor in the Lienhard School of Nursing Graduate Department.
Diane Meier, M.D., is Director of the Center to Advance Palliative Care
(CAPC), a national organization devoted to increasing the number and
quality of palliative care programs in the United States. Under her leadership
the number of palliative care programs in U.S. hospitals has more than
tripled in the past 10 years. She is also Vice-Chair for Public Policy and
Professor of Geriatrics and Palliative Medicine; Catherine Gaisman Professor
of Medical Ethics; and was the founder and Director of the Hertzberg
Palliative Care Institute from 1997 to 2011, all at the Icahn School of
Medicine at Mount Sinai in New York City.
Stacie Pinderhughes, M.D., is the Director of Palliative Medicine at Banner-
University Medical Center Phoenix and the Chair for the Division of Palliative
Care for Banner Health. She is board certified in palliative medicine,
geriatrics, and internal medicine. Dr. Pinderhughes received her medical
degree from the University of Medicine and Dentistry of New Jersey. She
completed her residency at the Robert Wood Johnson University Hospital
in New Brunswick, New Jersey. She is also a Clinical Associate Professor
of Internal Medicine at the University of Arizona.
Reverend Tyrone Pitts presently serves as the ecumenical officer and the
General Secretary Emeritus of the Progressive National Baptist Convention
Inc. He is also the President and CEO of Bridges International LLC,
a consultant service with the mission of building reconciliation in international
development and global education strategies among churches and
civil society. From 1990 to 2010 Dr. Pitts served as General Secretary of
the Progressive National Baptist Convention Inc., serving as Chief Operation
Officer of the Convention. He is currently serving on the Executive
Committee and the Central Committee of the World Council of Churches,
with 349 Protestant and Orthodox Church leaders from across the world,
and the National Conference of Black Churches representing eight historic
American African Denominations, the board of the Baptist Joint Committee
on Public Affairs, and the Baptist World Alliance. Dr. Pitts is also a member
of the staff team for The New Baptist Covenant spearheaded by President
Jimmy Carter.
Justin Sanders, M.D., is an Instructor in Medicine at Harvard Medical
School and an attending physician in the department of Psychosocial
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
116 HEALTH LITERACY AND PALLIATIVE CARE
Oncology and Palliative Care at the Dana-Farber Cancer Institute and
the Brigham and Women’s Hospital. His academic interests include health
care access, medical care of the underserved, substance misuse among
the seriously ill, and the medical humanities, including narrative medicine.
Dr. Sanders has a B.A. in Art History from Haverford College, an
M.D. from the University of Vermont College of Medicine, and an M.Sc.
in medical anthropology from University College London, where, as a
Fulbright
Scholar, he studied barriers to utilization of hospice services
among South Asian Muslims in East London, United Kingdom. He completed
internship, residency, and a chief residency in Family and Social
Medicine at Montefiore
Medical Center and is a graduate of the Harvard
Interdisciplinary Palliative Care Fellowship. A current research fellow in
the Serious Illness Care Program at Ariadne Labs, his research focuses on
cultural adaptation of a serious illness conversation guide.
Yael Schenker, M.D., received her undergraduate degree in literature from
Harvard University. She completed all of her medical training at the University
of California, San Francisco, before joining the faculty of the University
of Pittsburgh in 2010. She is currently an assistant professor in the Division
of General Internal Medicine, Section of Palliative Care and Medical
Ethics,
and holds a secondary appointment in the Clinical and Translational
Science Institute. She is also an affiliate faculty member in the Center for
Bioethics and Health Law, a member of the Biobehavioral Oncology Program
at the University of Pittsburgh Cancer Center, and an associate faculty
member of Clinical Research Modeling of Acute Illness in the Department
of Critical Care Medicine. Dr. Schenker’s research focuses on the integration
of palliative care services in oncology, surrogate decision making,
informed consent, and medical advertising. She has received funding from
the National Palliative Care Research Center, the University of Pittsburgh
Clinical Research Scholars (KL2) program, and the National Cancer Institute.
Dr. Schenker is also a practicing primary care physician and conducts
palliative care consults at the University of Pittsburgh Medical Center.
Thomas J. Smith, M.D., is the Director of Palliative Care for Johns Hopkins
Medicine and the Hopkins’ Sidney Kimmel Comprehensive Cancer Center.
Before joining Johns Hopkins, Dr. Smith served as the Medical Director
of the Thomas Palliative Care Program and the codirector of the Massey
Cancer Center Cancer Control and Prevention Program at the Virginia
Commonwealth University. He also holds the first Harry J. Duffey Family
Professorship of Palliative Care in the Department of Oncology. Dr. Smith
received his bachelor’s of science degree summa cum laude from the University
of Akron and his medical degree cum laude from Yale University
School of Medicine. He completed his residency in Internal Medicine at the
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary
APPENDIX B 117
University of Pennsylvania and completed a fellowship in hematology and
oncology at the Virginia Commonwealth University. He also was a special
fellow in medical oncology at the National Cancer Institute.
Elaine Wittenberg, Ph.D., is Associate Professor in the Division of Nursing
Research and Education at City of Hope Comprehensive Cancer Center
in Duarte, California. She holds a Ph.D. in Communication from the University
of Oklahoma. With a focus on hospice and palliative care, she is
co-author of several books, including Communication as Comfort: Multiple
Voices in Palliative Care (Routledge Taylor & Francis Group, 2008),
which details the complexities of communication in end-of-life care; and
Dying with Comfort: Family Illness Narratives and Early Palliative Care
(Hampton Press, 2010), both awarded Book of the Year by the National
Communication Association. Her latest volume, Communication in Palliative
Nursing (Oxford University Press, 2013), details the COMFORT
communication curriculum that provides nurses with instruction on
palliative care communication. Dr. Wittenberg is the lead editor of the
Textbook of Palliative Care Communication, published in 2015 by Oxford
University Press. She is co-founder of the Palliative Care Communication
Institute (www.pccinstitute.com), an online resource that provides information
on communication training, and offers provider, patient, and family
resources developed through rigorous communication research. Dr. Wittenberg
and colleagues recently launched Health Communication, a free iOS
app that provides easy-to-use communication strategies. She has authored
more than 100 peer-reviewed articles on hospice and palliative
care communication.
Her work can be found in Qualitative Health Research, Journal
of Pain and Symptom Management, Journal of Palliative Medicine, and the
European Journal of Cancer Care.
Copyright © National Academy of Sciences. All rights reserved.
Health Literacy and Palliative Care: Workshop Summary