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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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.
International Standard Book Number 13: 978-0-309-38036-2
International Standard Book Number 10: 0-309-38036-7
Digital Object Identifier: 10.17226/21839
Additional copies of this workshop summary are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Copyright 2016 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
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.
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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.
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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.
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
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.
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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.
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Figures and Tables
FIGURES
2-1 Concentration of health care spending among the top spenders
2-2 Distribution of enrollees by groups of enrollees
2-3 Ratio of social services to health services expenditures for OECD countries, 2005
2-4 A conceptual shift for palliative care
2-5 The value of palliative care at home for the chronically ill
3-1 Improvement in prognostic awareness among patients receiving palliative care
3-2 Palliative care allows cancer patients to experience less depression and anxiety
3-4 Modifying practice patterns to improve patient outcomes
3-5 Temporary tattoo listing important questions for patients and providers
3-6 Many factors play a role in the power differentials that affect health literacy
4-1 A computer-aided approach to teaching communication skills
5-1 A graphical representation of the multidimensional nature of palliative care
5-2 Social determinants of health
6-1 Two examples of health literate, written information available at San Francisco General Hospital
6-2 Instructions for California’s low health literacy advance directive form
6-3 Brochure for family members of patients who have died
6-4 Cue cards for patients with limited English proficiency
TABLES
2-1 Use of Health Services by Medicare and Medicaid Patients with and Without Dementia
5-1 United Hospital Fund’s Comparison of Hospice and Palliative Care
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 |
| 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 |
