Proceedings of a Workshop

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This activity was supported by the American Academy of Hospice and Palliative Medicine, American Cancer Society, American Geriatrics Society, Association of Professional Chaplains, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, Cambia Health Foundation, Catholic Health Association, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, CSU Shiley Haynes Institute for Palliative Care, The Greenwall Foundation, Hospice and Palliative Nurses Association, The John A. Hartford Foundation, Kaiser Permanente, National Association of Social Workers, 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, Sheri and Les Biller Family Foundation, and Society of Pain and Palliative Care Pharmacists. 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: 978-0-309-71876-9
International Standard Book Number – 10: 0-309-71876-7
Digital Object Identifier: https://doi.org/10.17226/27462

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Serious illness care research: Exploring current knowledge, emerging evidence, and future directions: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/27462.

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PLANNING COMMITTEE FOR A WORKSHOP ON SERIOUS ILLNESS CARE RESEARCH: EXPLORING CURRENT KNOWLEDGE, EMERGING EVIDENCE, AND FUTURE DIRECTIONS¹

JEAN S. KUTNER (Co-Chair), Distinguished Professor of Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine, and Chief Medical Officer, University of Colorado Hospital

R. SEAN MORRISON (Co-Chair), Ellen and Howard C. Katz Professor and Chair, Brookdale Department of Geriatrics and Palliative Medicine, and Director, National Palliative Care Research Center, Icahn School of Medicine at Mount Sinai

REBECCA A. ASLAKSON, Professor and Chair of the Department of Anesthesiology, Larner College of Medicine at the University of Vermont, and Health Care Service Chief, Network Department of Anesthesiology, University of Vermont Health Network

JORI BOGETZ, Assistant Professor, Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine; Attending Physician, Pediatric Palliative Care, Seattle Children’s Hospital; Associate Director of Research, Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children’s Research Institute

KAREN BULLOCK, Louise McMahon Ahearn Endowed Professor, School of Social Work, Boston College, and Faculty Appointment, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute

CAREY CANDRIAN, Associate Professor, Division of General Internal Medicine, University of Colorado School of Medicine

CARINE DAVILA, Palliative Care Physician and Equity Director, Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, and Clinical Instructor, Harvard Medical School

___________________

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.

ANNA GOSLINE, Senior Director of Strategic Initiatives in the Executive Office, Blue Cross Blue Shield of Massachusetts, and Executive Director, Massachusetts Coalition for Serious Illness Care

SCOTT HALPERN, John M. Eisenberg Professor of Medicine, Epidemiology, and Medical Ethics and Health Policy, Perelman School of Medicine, and Founding Director of the Palliative and Advanced Illness Research Center, University of Pennsylvania

DIO KAVALIERATOS, Associate Professor and Director of Research and Quality, Division of Palliative Medicine, Department of Family and Preventive Medicine, Rollins School of Public Health, Emory University

HUONG NGUYEN, Interim Director, Division of Health Services Research and Implementation Science, Department of Research and Evaluation, Kaiser Permanente Southern California; Professor, Department of Health Systems Science, Kaiser Permanente Bernard J. Tyson School of Medicine

SHERIA ROBINSON-LANE, Assistant Professor, Department of Systems, Populations and Leadership, University of Michigan School of Nursing

Project Staff

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

SHARYL NASS, Director, Board on Health Care Services

EMMA ROONEY, Research Assistant (through December 2023)

ISAAC SUH, Research Associate (through January 2024)

Consultant

JOE ALPER, Consulting Writer

ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS¹

PEGGY MAGUIRE (Co-Chair), Cambia Health Foundation

PHILLIP E. RODGERS (Co-Chair), University of Michigan Medical School

JORI BOGETZ, Seattle Children’s Hospital and Research Institute

BRYNN BOWMAN, Center to Advance Palliative Care

KAREN BULLOCK, representing the National Association of Social Workers

JANE CARMODY, The John A. Hartford Foundation

STEVE CLAUSER, Patient-Centered Outcomes Research Institute

HEATHER COATS, representing the Hospice and Palliative Nurses Association

RORY FARRAND, National Hospice and Palliative Care Organization

LORI FRANK, New York Academy of Medicine (through January 2024)

JEFFERY GARLAND, representing the Association of Professional Chaplains (from January 2024)

MATTHEW GONZALES, representing the Catholic Health Association

ANNA GOSLINE, Blue Cross Blue Shield of Massachusetts

MICHELLE GROMAN, The Greenwall Foundation (through December 2023)

AUDREY HABERMAN, Sheri and Les Biller Family Foundation

SCOTT HALPERN, University of Pennsylvania Perelman School of Medicine

SHARON B. HAMILL, CSU Shiley Haynes Institute for Palliative Care

RAZIA HASHMI, Blue Cross Blue Shield Association

JESSICA A. HAUSAUER, National Coalition for Hospice and Palliative Care

DENISE HESS, representing the Association of Professional Chaplains (through December 2023)

ARIF KAMAL, American Cancer Society

REBECCA A. KIRCH, National Patient Advocate Foundation

TOM KOUTSOUMPAS, Coalition to Transform Advanced Care

___________________

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.

KASHELLE LOCKMAN, representing the Society of Pain and Palliative Care Pharmacists

DIANE E. MEIER, Center to Advance Palliative Care

R. SEAN MORRISON, National Palliative Care Research Center

THOMAS M. PRISELAC, Cedars-Sinai Health System

JOANNE REIFSNYDER, representing the Hospice and Palliative Nurses Association (through March 2024)

JOE ROTELLA, American Academy of Hospice and Palliative Medicine

JOSEPH W. SHEGA, representing the American Geriatrics Society

CARDINALE SMITH, Mount Sinai Health System

SUSAN ELIZABETH WANG, Kaiser Permanente

Roundtable on Quality Care for People with Serious Illness Staff

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

SHARYL NASS, Director, Board on Health Care Services

EMMA ROONEY, Research Assistant (through December 2023)

ISAAC SUH, Research Associate (through January 2024)

ABIAN HAILU, Senior Program Assistant (as of February 2024)

JULIE WILTSHIRE, Senior Finance Business Partner, Board on Health Care Services

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 BETTY R. FERRELL, City of Hope National Medical Center. 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 Jean Kutner and Sean Morrison 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, we want 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 American Academy of Hospice and Palliative Medicine, American Cancer Society, American Geriatrics Society, Association of Professional Chaplains, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, Cambia Health Foundation, Catholic Health Association, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, CSU Shiley Haynes Institute for Palliative Care, The Greenwall Foundation, Hospice and Palliative Nurses Association, The John A. Hartford Foundation, Kaiser Permanente, National Association of Social Workers, 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, Sheri and Les Biller Family Foundation, and Society of Pain and Palliative Care Pharmacists.

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Contents

ACRONYMS AND ABBREVIATIONS

PROCEEDINGS OF A WORKSHOP

WORKSHOP OVERVIEW

INTEGRATING LIVED EXPERIENCE INTO SERIOUS ILLNESS CARE RESEARCH

A Patient’s Perspective

A Care Partner’s Perspective

The Parkinson’s Foundation Perspective

Expanding Access to Palliative Care

Audience Q&A

EXPLORING THE STATE OF THE SCIENCE OF SERIOUS ILLNESS CARE RESEARCH: PAST, CURRENT, AND FUTURE

Audience Q&A

IMPROVING EVIDENCE GENERATION TO ADDRESS GAPS IN SERIOUS ILLNESS CARE RESEARCH: RESEARCH METHODOLOGY/STUDY DESIGN

Mixed Methods Research and Evaluating Complex Interventions

Identifying Effective Components of Serious Illness Care

Pragmatic Trials in Serious Illness

An Economic Perspective on Serious Illness Research

Statistical Methods, Study Design, and Workforce Training

Panel Discussion

Audience Q&A

IMPROVING EVIDENCE GENERATION FOR SERIOUS ILLNESS CARE RESEARCH: OUTCOME MEASURES AND DATA CAPTURE

Gaps and Opportunities for Patient- and Care-Partner-Reported Outcomes

Gaps in Patient-Reported Outcomes in Serious Illness Care Research

Spirituality in Serious Illness: Current Evidence and Future Priorities

Quantifying Language for Serious Illness Care Research with NLP

A Pragmatic Trials Perspective of Outcome Measures for Persons with Serious Illness

Panel Discussion

Audience Q&A

INTEGRATING HEALTH EQUITY INTO SERIOUS ILLNESS CARE RESEARCH

Social Work Competencies for Advancing Health Equity Research

Unmuting Rural Voices: Toward Health Equity in Palliative Care

Integrating Health Equity into Serious Illness Care Research for the Lesbian, Gay, Bisexual, Transgender, and Questioning/Queer (LGBTQ) Community

Diversity in Clinical Trials

Panel Discussion

Audience Q&A

IMPLEMENTATION SCIENCE: TRANSLATING RESEARCH INTO PRACTICE

Implementation Science and Serious Illness Care Research

Implementation Research in Acute Care Settings

Serious Illness Care Research in Nursing Homes

Implementation of Care Delivery Models in the Community and Home: Lessons from the 20-Year Odyssey of Hospital at Home

Panel Discussion

Audience Q&A

LOOKING TO THE FUTURE: RESEARCH PRIORITIES FOR SERIOUS ILLNESS CARE

NIA’s Commitment to Advancing Serious Illness Research

Caring for the Most Vulnerable Populations

Panel Discussion

Audience Q&A

Planning for the Future

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 for Ways to Expand the Evidence Base for Serious Illness Care Research

FIGURES

1 U.S. hospitals of 50 or more beds with palliative care programs

2 U.S. palliative medicine fellowships

3 Board-certified palliative medicine physicians in the United States

4 U.S. biomedical research funding

5 NIH grant dollars awarded for serious illness research by institute

6 The classic bundled package approach to intervention development and testing

7 The multiphase optimization strategy for intervention testing

8 The NIH stage model for behavioral intervention development

9 The PRECIS-2 wheel for rating trial design choices

10 The PRECIS-2 domains for the ED-LEAD study

11 A taxonomy for spirituality

12 The domains and methods of implementation science

13 A conceptual framework of factors that influence serious illness conversation implementation

14 Engaged, data-driven selection of indicators and adaptations to improve health equity

15 The Systems Engineering Initiative for Patient Safety model for work system design

16 NIH-wide collaboration on palliative care research

17 The Consortium for Palliative Care Research Across the Lifespan U54 cooperative agreement

Acronyms and Abbreviations