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

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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Copyright 2022 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. 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.

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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

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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.

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

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

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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.

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)

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

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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:

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.

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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

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.

Contents

BOX AND FIGURES

ACRONYMS AND ABBREVIATIONS

PROCEEDINGS OF A WORKSHOP

INTRODUCTION

WEBINAR ONE

The Immediate Impact of the Pandemic

Innovative Early Responses to the Pandemic

Closing Comments from the First Webinar

WEBINAR TWO

Workforce Challenges and Innovations

Perspectives on the Use of Telehealth

Closing Remarks

WEBINAR THREE

Public Health Communication and Research Translation

Building on Lessons Learned to Guide Future Policy

Closing Remarks

REFERENCES

APPENDIX A: Statement of Task

APPENDIX B: Workshop Agenda

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Box and Figures

BOX

1 Suggestions Made by Individual Workshop Participants to Improve Care of People with Serious Illness in Light of Lessons Learned during the COVID-19 Pandemic

FIGURES

1 Daily volume of the PATCH-24 telephonic palliative support line and associated emergency department (ED) consults during the COVID-19 pandemic

2 Age-adjusted COVID-19-associated hospitalization rates by race and ethnicity

3 Age-adjusted COVID-19 deaths per 100,000 Americans through August 18, 2020

4 Unemployment rates by race/ethnicity from February to June 2020

5 Weekly U.S. COVID-19 deaths per 100,000 population by race/ethnicity, March 1, 2020–October 30, 2021

6 An illustration of the emotional trajectory many individuals experienced during the COVID-19 pandemic

7 Professional and personal challenges experienced during the COVID-19 pandemic

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Acronyms and Abbreviations