The Challenges and
Opportunities of
Advance Care Planning
PROCEEDINGS OF A WORKSHOP
Laurene Graig, Kaitlyn Friedman, and Joe Alper, Rapporteurs
Roundtable on Quality Care for People with Serious Illness
Board on Health Care Services
Board on Health Sciences Policy
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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This activity was supported by Task Order No. 75N98F20P00009 with the National Institutes of Health’s National Institute of Nursing Research and by the American Academy of Hospice and Palliative Medicine, American Geriatrics Society, Anthem, Ascension Health, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Arizona, Blue Cross Blue Shield of Massachusetts, Blue Cross Blue Shield of North Carolina, The California State University Shiley Institute for Palliative Care, Cambia Health Solutions, Cedars-Sinai Health System, Center to Advance Palliative Care, Centers for Medicare & Medicaid Services, Coalition to Transform Advanced Care, Excellus BlueCross BlueShield, Gordon and Betty Moore Foundation, The Greenwall Foundation, The John A. Hartford Foundation, Hospice & Palliative Nurses Association, Humana, Kaiser Permanente, National Academy for State Health Policy, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Palliative Care Research Center, National Patient Advocate Foundation, The New York Academy of Medicine, Patient-Centered Outcomes Research Institute, Social Work Hospice & Palliative Care Network, Supportive Care Coalition, University of Southern California Leonard D. Schaeffer Center for Health Policy & Economics, and the National Academy of Medicine.
International Standard Book Number-13: 978-0-309-44737-9
International Standard Book Number-10: 0-309-44737-2
Digital Object Identifier: https://doi.org/10.17226/26119
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2021. The challenges and opportunities of advance care planning: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26119.
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PLANNING COMMITTEE FOR A VIRTUAL WORKSHOP ON ADVANCE CARE PLANNING: CHALLENGES AND OPPORTUNITIES1
ROBERT M. ARNOLD (Co-Chair), Distinguished Service Professor of Medicine, University of Pittsburgh Medical Center
JOANNE REIFSNYDER (Co-Chair), Executive Vice President, Clinical Operations, and Chief Nursing Officer, Genesis HealthCare (representing the Hospice and Palliative Care Nurses Association)
PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield; Chair, MOLST Statewide Implementation Team; Program Director, eMOLST; Chair, National Healthcare Decisions Day
JANE CARMODY, Program Officer, The John A. Hartford Foundation
ANNA GOSLINE, Senior Director of Strategic Initiatives, Blue Cross Blue Shield of Massachusetts; Executive Director, Massachusetts Coalition for Serious Illness Care
DENISE HESS, Director, Supportive Care Coalition, Catholic Health Association (representing the Association of Professional Chaplains)
HAIDEN HUSKAMP, 30th Anniversary Professor of Health Care Policy, Department of Health Care Policy, Harvard Medical School KIMBERLY SHERELL JOHNSON, Associate Professor of Medicine, Senior Fellow in the Center for the Study of Aging and Human Development, Duke University School of Medicine
REBECCA A. KIRCH, Executive Vice President, Policy and Programs, National Patient Advocate Foundation
BERNARD LO, President Emeritus, The Greenwall Foundation
R. SEAN MORRISON, Co-Director, Patty and Jay Baker National Palliative Care Center; Director, National Palliative Care Research Center; Director, Hertzberg Palliative Care Institute; Hermann Merkin Professor of Palliative Care, Professor of Geriatrics and Palliative Medicine, Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
JUDITH R. PERES, Board Member, Social Work Hospice and Palliative Care Network
LEONARD D. SCHAEFFER, Judge Robert Maclay Widney Chair and Professor, University of Southern California
REBECCA SUDORE, Professor of Medicine, University of California, San Francisco, School of Medicine JAMES A. TULSKY, Chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute; Chief, Division of Palliative Medicine, Department of Medicine, Brigham and Women’s Hospital; Co-Director, Harvard Medical School Center for Palliative Care; Professor of Medicine, Harvard Medical School
Project Staff
LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness
KAITLYN FRIEDMAN, Associate Program Officer
ANESIA WILKS, Senior Program Assistant
SHARYL NASS, Senior Director, Board on Health Care Services, and Director, National Cancer Policy Forum
Consultant
JOE ALPER, Consulting Writer
ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS1
PEGGY MAGUIRE (Co-Chair), President and Board Chair, Cambia Health Foundation
JAMES A. TULSKY (Co-Chair), Chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute; Chief, Division of Palliative Medicine, Department of Medicine, Brigham and Women’s Hospital; Co-Director, Harvard Medical School Center for Palliative Care; Professor of Medicine, Harvard Medical School
KIRK ALLEN, Senior Vice President, Home Care, Humana
JENNIFER BALLENTINE, Executive Director, The California State University Shiley Institute for Palliative Care
ROBERT A. BERGAMINI, SSM Health (representing the Supportive Care Coalition)
LORI BISHOP, Vice President of Palliative and Advanced Care, National Hospice and Palliative Care Organization
PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield; Chair, MOLST Statewide Implementation Team; Program Director, eMOLST; Chair, National Healthcare Decisions Day
KAREN BULLOCK, Professor, John A. Hartford Faculty Scholar, Department of Social Work, North Carolina State University (representing the Social Work Hospice and Palliative Care Network)
GRACE B. CAMPBELL, Assistant Professor, Department of Acute and Tertiary Care, University of Pittsburgh School of Nursing (representing the Association of Rehabilitation Nurses)
JOHN CAMPBELL, Senior Medical Director, Clinical Effectiveness, Blue Cross Blue Shield of North Carolina
JANE CARMODY, Program Officer, The John A. Hartford Foundation
STEVE CLAUSER, Director, Healthcare Delivery and Disparities Research Program, Patient-Centered Outcomes Research Institute
SARAH DAMIANO, Director, Palliative Care, Clinical and Network Services, Ascension Health
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
DAVID J. DEBONO, National Medical Directory for Oncology, Anthem
CAROLE REDDING FLAMM, Executive Medical Director, Center for Clinical Value, Office of Clinical Affairs, Blue Cross Blue Shield Association
ANNA GOSLINE, Senior Director of Strategic Initiatives, Blue Cross Blue Shield of Massachusetts; Executive Director, Massachusetts Coalition for Serious Illness Care
MICHELLE GROMAN, President and Chief Executive Officer, The Greenwell Foundation
DENISE HESS, Director, Supportive Care Coalition, Catholic Health Association (representing the Association of Professional Chaplains)
PAMELA S. HINDS, Director and Professor, Conway Chair in Nursing Research; Director Nursing Research and Quality Outcomes, Children’s National Health System
HAIDEN HUSKAMP, 30th Anniversary Professor of Health Care Policy, Department of Health Care Policy, Harvard Medical School
KIMBERLY SHERELL JOHNSON, Associate Professor of Medicine, Senior Fellow in the Center for the Study of Aging and Human Development, Duke University School of Medicine
REBECCA A. KIRCH, Executive Vice President, Policy and Programs, National Patient Advocate Foundation
TOM KOUTSOUMPAS, Co-Founder, Coalition to Transform Advanced Care; President and Chief Executive Officer, National Partnership for Hospice Innovation
SHARI M. LING, Deputy Chief Medical Officer, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services
DIANE E. MEIER, Director, Center to Advance Palliative Care; Gaisman Professor of Medical Ethics, Vice Chair for Public Policy and Professor, Department of Geriatrics and Palliative Medicine, Department of Medicine, Icahn School of Medicine at Mount Sinai
AMY MELNICK, Executive Director, National Coalition for Hospice and Palliative Care
JERI L. MILLER, Chief, Office of End-of-Life and Palliative Care Research, Senior Policy Analysis, Division of Extramural Science Programs, National Institute of Nursing Research, National Institutes of Health
R. SEAN MORRISON, Co-Director, Patty and Jay Baker National Palliative Care Center; Director, National Palliative Care Research Center; Director, Hertzberg Palliative Care Institute; Hermann Merkin Professor of Palliative Care, Professor of Geriatrics and Palliative Medicine, Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai
PHILIP A. PIZZO, Founding Director, Stanford Distinguished Careers Institute; Former Dean and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology, Stanford School of Medicine
THOMAS M. PRISELAC, President and Chief Executive Officer, Cedars-Sinai Health System
KITTY PURINGTON, Senior Program Director, National Academy for State Health Policy
RUBINA RAJA, Medical Director, Operations, Blue Cross Blue Shield of Arizona
JOANNE REIFSNYDER, Executive Vice President, Clinical Operations, and Chief Nursing Officer, Genesis HealthCare (representing the Hospice and Palliative Nurses Association)
PHILLIP RODGERS, Professor, Family Medicine and Internal Medicine; Director, Adult Palliative Medicine Clinical Programs, University of Michigan (representing the American Academy of Hospice and Palliative Medicine)
JUDITH A. SALERNO, President, The New York Academy of Medicine
LEONARD D. SCHAEFFER, Judge Robert Maclay Widney Chair and Professor, University of Southern California
JOSEPH W. SHEGA, Senior Vice President and Chief Medical Officer, VITAS Hospice Care (representing the American Geriatrics Society)
SUSAN ELIZABETH WANG, WLA Chief, Department of Geriatrics, Palliative, and Continuing Care; Fellowship Director, Palliative Medicine; Regional Lead, Shared Decision-Making and Advance Care Planning, Southern California Permanente Medical Group, Kaiser Permanente
Roundtable on Quality Care for People with Serious Illness Staff
LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness
KAITLYN FRIEDMAN, Associate Program Officer
ANESIA WILKS, Senior Program Assistant
MICAH WINOGRAD, Senior Finance Business Partner
SHARYL NASS, Senior Director, Board on Health Care Services, and Director, National Cancer Policy Forum
ANDREW M. POPE, Senior Director, Board on Health Sciences Policy
Reviewers
This Proceedings of a Workshop was 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 National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings:
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by KATHLEEN UNROE, Indiana University Center for Aging and Indiana University School of Medicine. She was responsible for making certain that an independent examination of this
proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
Acknowledgments
The National Academies of Sciences, Engineering, and Medicine’s Roundtable on Quality Care for People with Serious Illness wishes to express its sincere gratitude to the planning committee co-chairs Robert Arnold and JoAnne Reifsnyder for their valuable contributions to the development and orchestration of this workshop. The roundtable also wishes to thank all the members of the planning committee, who collaborated to ensure a workshop replete with informative presentations and rich discussions. Finally, the roundtable wants to thank the speakers and moderators, who generously shared their expertise and their time with workshop participants.
Support from the many annual sponsors of the Roundtable on Quality Care for People with Serious Illness is critical to its work. The sponsors include the National Institutes of Health’s National Institute of Nursing Research and the American Academy of Hospice and Palliative Medicine, American Geriatrics Society, Anthem, Ascension Health, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Arizona, Blue Cross Blue Shield of Massachusetts, Blue Cross Blue Shield of North Carolina, The California State University Shiley Institute for Palliative Care, Cambia Health Solutions, Cedars-Sinai Health System, Center to Advance Palliative Care, Centers for Medicare & Medicaid Services, Coalition to Transform Advanced Care, Excellus BlueCross BlueShield, Gordon and Betty Moore Foundation, The Greenwall Foundation, The John A. Hartford Foundation, Hospice
& Palliative Nurses Association, Humana, Kaiser Permanente, National Academy for State Health Policy, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Palliative Care Research Center, National Patient Advocate Foundation, The New York Academy of Medicine, Patient-Centered Outcomes Research Institute, Social Work Hospice & Palliative Care Network, Supportive Care Coalition, University of Southern California Leonard D. Schaeffer Center for Health Policy & Economics, and the National Academy of Medicine.
Contents
THE PARADOX OF ADVANCE CARE PLANNING
Lived Experiences with Advance Care Planning
An Ethical Framework: From Advance Directives to Advance Care Planning
The Complexities of Advance Care Planning: What Are We Even Talking About?
INTERPRETING THE EVIDENCE BASE FOR ADVANCE CARE PLANNING
What Is the Evidence and Why Does It Matter?
How Clinical and Health Care Leaders Use Advance Care Planning Research
Advance Care Planning Is a Right: A Medical–Legal Perspective
THINKING DIFFERENTLY ABOUT ADVANCE CARE PLANNING
Flaws in Advance Care Planning Implementation and Evaluation
Advance Care Planning: Ethical Challenges
Advancing the Language of Advance Care Planning: A Messaging Research Project
PRACTICAL STEPS TO MORE EFFECTIVE ADVANCE CARE PLANNING
The Importance of Patients’ and Families’ Nonmedical Concerns
Implementing Advance Care Planning in the Hospital Setting
The Health System Perspective on Practical Steps to More Effective Advance Care Planning
Box, Figures, and Table
BOX
FIGURES
2 The continuum of communication and decision making in serious illness care
3 Advanced serious illness preparation and planning
TABLE
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Acronyms and Abbreviations
ACP | advance care planning |
CCCC | Community Conversations on Compassionate Care |
CPR | cardiopulmonary resuscitation |
ED | emergency department |
EHR | electronic health record |
ICU | intensive care unit |
MOLST | medical orders for life-sustaining treatment |
NPAF | National Patient Advocate Foundation |
POLST | physician orders for life-sustaining treatment |
PTSD | posttraumatic stress disorder |
RCT | randomized controlled trial |
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