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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Image

Caring for People with
Serious Illness

Lessons Learned from the COVID-19
Pandemic

_____

Laurene Graig 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

Proceedings of a Workshop

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by contracts between the National Academy of Sciences and American Academy of Hospice and Palliative Medicine, American Geriatrics Society, Ascension Health, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, Cambia Health Foundation, the California State University Shiley Haynes Institute for Palliative Care, Catholic Health Association, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, Gordon and Betty Moore Foundation, the Greenwall Foundation, Hospice and Palliative Nurses Association, the John A Hartford Foundation, Kaiser Permanente, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Palliative Care Research Center, National Patient Advocate Foundation, New York Academy of Medicine, Patient-Centered Outcomes Research Institute, and the Social Work Hospice and Palliative Care Network. 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: 978-0-309-68958-8
International Standard Book Number-10: 0-309-68958-9
Digital Object Identifier: https://doi.org/10.17226/26596

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Caring for people with serious illness: Lessons learned from the COVID-19 pandemic: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26596.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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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.

The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president.

The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

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. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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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.

Rapid Expert Consultations published by the National Academies of Sciences, Engineering, and Medicine are authored by subject-matter experts on narrowly focused topics that can be supported by a body of evidence. The discussions contained in rapid expert consultations are considered those of the authors and do not contain policy recommendations. Rapid expert consultations are reviewed by the institution before release.

For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
×

PLANNING COMMITTEE FOR A WORKSHOP ON CARING FOR PEOPLE WITH SERIOUS ILLNESS DURING THE COVID-19 PANDEMIC1

BRYNN BOWMAN (Co-chair), Chief Executive Officer, Center to Advance Palliative Care; and Assistant Professor, Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai

SUSAN ELIZABETH WANG (Co-chair), SCAL Chief, Department of Geriatrics and Palliative Medicine; SCAL Medical Director, Life Care Planning and Serious Illness Care; and National Lead, Palliative Care, Kaiser Permanente

LORI BISHOP, Vice President of Palliative and Advanced Care, National Hospice and Palliative Care Organization

JON BROYLES, Executive Director, Coalition to Transform Advanced Care

KAREN BULLOCK, Professor and John A. Hartford Faculty Scholar, Department of Social Work, North Carolina State University

PAMELA S. HINDS, Executive Director, Department of Nursing Science, Professional Practice and Quality; Research Integrity Officer, Children’s National Hospital; and Professor of Pediatrics, School of Medicine and Health Sciences, George Washington University

HAIDEN HUSKAMP, Henry J. Kaiser Professor of Health Care Policy, Department of Health Care Policy, Harvard Medical School

KIMBERLY SHERELL JOHNSON, Professor, Division of Geriatrics and Center for Palliative Care, Duke University Medical Center

PEGGY MAGUIRE, President and Board Chair, Cambia Health Foundation

JUDITH A. SALERNO, President, New York Academy of Medicine

Project Staff

LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness

___________________

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. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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ANESIA WILKS, Senior Program Assistant

KAITLYN FRIEDMAN, Associate Program Officer

SHARYL NASS, Senior Director, Board on Health Care Services, and Director, National Cancer Policy Forum

ANDREW M. POPE, Director, Board on Health Sciences Policy

Consultant

JOE ALPER, Consulting Writer

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
×

ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS1

PEGGY MAGUIRE (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, Brigham and Women’s Hospital; Professor of Medicine and Co-director, Center for Palliative Care; Professor of Medicine, Harvard Medical School

JENNIFER BALLENTINE, Executive Director, The California State University Shiley Haynes 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 (through December 2021)

BRYNN BOWMAN, Chief Executive Officer, Center to Advance Palliative Care; Assistant Professor, Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai

KAREN BULLOCK, Professor and 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, Duquesne University School of Nursing (representing the Association of Rehabilitation Nurses)

JANE CARMODY, Senior Program Officer, The John A. Hartford Foundation

STEVE CLAUSER, Program Director, Healthcare Delivery and Disparities Research, Patient-Centered Outcomes Research Institute

SARA DAMIANO, National Director of Palliative Care, Ascension Health

ANNA GOSLINE, Senior Director of Strategic Initiatives, BlueCross BlueShield of Massachusetts; Executive Director, Massachusetts Coalition for Serious Illness Care

___________________

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. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
×

MICHELLE GROMAN, President and Chief Executive Officer, The Greenwall Foundation

DENISE HESS, Director, Supportive Care, The Catholic Health Association of the United States (representing the Association of Professional Chaplains)

PAMELA S. HINDS, Executive Director, Department of Nursing Science, Professional Practice and Quality; Research Integrity Officer, Children’s National Hospital; and Professor of Pediatrics, School of Medicine and Health Sciences, George Washington University

HAIDEN HUSKAMP, Henry J. Kaiser Professor of Health Policy, Harvard Medical School

KIMBERLY SHERELL JOHNSON, Professor of Medicine, Duke University School of Medicine

REBECCA A. KIRCH, Executive Vice President of Policy and Programs, National Patient Advocate Foundation

TOM KOUTSOUMPAS, Co-founder, Coalition to Transform Advanced Care

SHARI M. LING, Deputy Chief Medical Officer, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services

DIANE E. MEIER, Founder, Director Emerita and Strategic Medical Advisor, Center to Advance Palliative Care

AMY MELNICK, Executive Director, National Coalition for Hospice and Palliative Care

R. SEAN MORRISON, Director, National Palliative Care Research Center, Icahn School of Medicine at Mount Sinai

CAROL J. PEDEN, Executive Director for Clinical Quality, Blue Cross Blue Shield Association

THOMAS M. PRISELAC, President and Chief Executive Officer, Cedars-Sinai Health System

KITTY PURINGTON, Senior Program Director, National Academy for State Health Policy

JOANNE REIFSNYDER, Professor, Health Services Leadership and Management, Department of Organizational Systems and Adult Health, University of Maryland School of Nursing (representing the Hospice and Palliative Nurses Association)

PHILLIP RODGERS, Professor, Family Medicine and Internal Medicine, and Director, Adult Palliative Medicine Clinical Programs, University of Michigan (representing the American Academy of Hospice and Palliative Medicine)

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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JUDITH A. SALERNO, President, 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, SCAL Chief, Department of Geriatrics and Palliative Medicine; SCAL Medical Director, Life Care Planning and Serious Illness Care; National Lead, Palliative Care, 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 (until December 2021)

RUKSHANA GUPTA, Research Assistant (until June 2022)

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. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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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:

CHANDANA BANERJEE, M.D., M.P.A., HMDC, City of Hope National Medical Center

PATRICIA JUSTIS, M.A., Washington State Department of Health

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 KATHRYN MCDONALD, Ph.D., M.M. 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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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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, Brynn Bowman and Susan Elizabeth Wang, 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 complete with informative presentations and rich discussions. Finally, the Roundtable thanks 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 is critical to its work. The sponsors include American Academy of Hospice and Palliative Medicine, American Geriatrics Society, Ascension Health, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, the California State University Shiley Haynes Institute for Palliative Care, Cambia Health Foundation, Catholic Health Association, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, Gordon and Betty Moore Foundation, Greenwall Foundation, Hospice and Palliative Nurses Association, The John A. Hartford Foundation, Kaiser Permanente, National Coalition for Hospice and Palliative Care, National Hospice and Palliative

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Care Organization, National Palliative Care Research Center, New York Academy of Medicine, Patient-Centered Outcomes Research Institute, and the Social Work Hospice and Palliative Care Network.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Acronyms and Abbreviations

CDC Centers for Disease Control and Prevention
CEAL Community Engagement Alliance Against COVID-19 Disparities
CHIP Children’s Health Insurance Program
CHW community health worker
CMMI Center for Medicare and Medicaid Innovation
CMS Centers for Medicare & Medicaid Services
ECHO Extension for Community Healthcare
ED emergency department
HHS U.S. Department of Health and Human Services
ICU intensive care unit
IMPaCT Individualized Management for Patient-Centered Targets
MACRA Medicare Access and CHIP Reauthorization Act of 2015
MIS-C multisystem inflammatory syndrome
NCQA National Committee for Quality Assurance
NIH National Institutes of Health
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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NIMHD National Institute of Minority Health and Health Disparities
PCORI Patient-Centered Outcomes Research Institute
PPE personal protective equipment
PTAC Physician-Focused Payment Model Technical Advisory Committee
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Caring for People with Serious Illness: Lessons Learned from the COVID-19 Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26596.
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The COVID-19 pandemic has highlighted existing weaknesses in the United States health care system, while creating a new set of challenges related to caring for people with serious illness. The National Academy of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a three-part workshop to explore the initial responses to the pandemic by health care teams providing care to people with serious illness, the impact of the pandemic on the health care workforce, the use of telehealth, issues related to clearly communicating with the public about health emergencies, and policy opportunities to improve care for people with serious illness. Issues related to health equity were discussed throughout the three webinars.

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