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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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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

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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
×

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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.

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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.

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
×

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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 their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.

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Suggested Citation:"Front Matter." 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. doi: 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.

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
×

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.

Page viii Cite
Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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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

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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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

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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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

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
×

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.

Page xiii Cite
Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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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

Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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& 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.

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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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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
Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/26119.
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Advance Care Planning(ACP)has long been a staple of caring for people with serious illness. Over its history, it has been defined in different ways. Clinicians, researchers, patients, and the public have developed a variety of perspectives about the many aspects of ACP, ranging from the definition to the timing, goals, outcomes, and value of ACP.

To better understand the challenges and opportunities for ACP, acknowledge and highlight divergent viewpoints, and examine what is empirically known and not known about ACP and its outcomes, the National Academies of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a virtual public workshop, Advance Care Planning: Challenges and Opportunities, on October 26 and November 2, 2020. The workshop explored the paradox of ACP, its evidence base, ways to think differently about ACP, and various approaches to making it more effective.This Proceedings of a Workshop summarizes the presentations and discussions from that workshop.

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