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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
×

Integrating Serious Illness Care
into Primary Care Delivery

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. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
×

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This activity was supported by Purchase 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 Massachusetts, The California State University Shiley Haynes Institute for Palliative Care, Cambia Health Foundation, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, Gordon and Betty Moore Foundation, The Greenwall Foundation, Hospice & 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, 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. 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: 978-0-309-27433-3
International Standard Book Number-10: 0-309-27433-8
Digital Object Identifier: https://doi.org/10.17226/26411

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Integrating serious illness care into primary care delivery: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26411.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
×

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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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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
×

PLANNING COMMITTEE FOR A WORKSHOP ON INTEGRATING SERIOUS ILLNESS CARE INTO PRIMARY CARE DELIVERY1

PATRICIA M. DAVIDSON (Co-Chair), Vice Chancellor, University of Wollongong, Australia (as of April 2021); Dean and Professor, School of Nursing, Johns Hopkins University (until March 2021)

PHILLIP RODGERS (Co-Chair), Professor, Family Medicine and Internal Medicine, and Co-Director, Clinical Palliative Care Program, University of Michigan School of Medicine (representing the American Academy of Hospice and Palliative Medicine)

CLAIRE ANKUDA, Assistant Professor, Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai

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, John A. Hartford Faculty Scholar, Department of Social Work, North Carolina State University (representing Social Work Hospice and Palliative Care Network)

DEBORAH J. COHEN, Professor of Family Medicine, Oregon Health & Science University

CAROLE REDDING FLAMM, Executive Medical Director, Blue Cross Blue Shield Association

ANN GREINER, President and Chief Executive Officer, Primary Care Collaborative

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

LARS PETERSON, Vice President of Research, American Board of Family Medicine

TAMMIE QUEST, Professor and Chief, Emory Palliative Care Center, Woodruff Health Sciences Center, Emory University

___________________

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. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
×

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

Consultant

JOE ALPER, Consulting Writer

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
×

ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS1

PEGGY MAGUIRE (Co-Chair), President and Board Chair, Cambria 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, 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

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, John A. Hartford Faculty Scholar, Department of Social Work, North Carolina State University (representing 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)

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

STEVE CLAUSER, Program Director, Improving Healthcare Systems Research Program, Patient-Centered Outcomes Research Institute

SARA DAMIANO, National Director of Palliative Care, Ascension Health

DAVID J. DEBONO, Medical Director, Anthem

___________________

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. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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CAROLE REDDING FLAMM, Executive Medical Director, Blue Cross Blue Shield Association

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

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

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

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

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

KIMBERLY SHERELL JOHNSON, Professor of Medicine and Senior Fellow, 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

SHARI LING, Deputy CMS Chief Medical Officer, Center for Medicare & Medicaid Services

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

JERI L. MILLER, Chief, Office of End-of-Life and Palliative Care Research, National Institute of Nursing Research, National Institutes of Health

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

PHILLIP A. PIZZO, Founding Director, Stanford Distinguished Careers Institute; Former Dean and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology, Stanford University School of Medicine

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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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KITTY PURINGTON, Senior Program Director, National Academy for State Health Policy

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, and Co-Director, Clinical Palliative Care Program, University of Michigan School of Medicine (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, Regional Medical Director, VITAS Hospice Care (representing the American Geriatrics Society)

SUSAN ELIZABETH WANG, Regional Chief, Department of Geriatrics & Palliative Medicine, Regional Physician Director, Life Care Planning & Serious Illness Care, and National Lead, Care Management Institute, Palliative Care, 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

SHARYL NASS, Senior Director, Board on Health Care Services

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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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:

We also thank staff member LIDA BENINSON for reading and providing helpful comments on this manuscript. 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 MARK LAZENBY, University of Connecticut. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
×

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. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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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 Patricia M. Davidson and Phillip Rodgers for their valuable contributions to the development and orchestration of this workshop. The roundtable also wishes to thank all of the members of the planning committee, who collaborated to ensure a workshop complete 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 is critical to the roundtable’s 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 Massachusetts, The California State University Shiley Haynes Institute for Palliative Care, Cambia Health Foundation, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, Gordon and Betty Moore Foundation, The Greenwall Foundation, Hospice & Palliative Nurses Association, The John A. Hartford Foundation, Kaiser Permanente, National Coalition for

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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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. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Acronyms and Abbreviations

AAFP American Academy of Family Physicians
ACP advance care planning
CMS Centers for Medicare & Medicaid Services
COPD chronic obstructive pulmonary disease
COVID-19 coronavirus disease 2019
ECHO Extension for Community Healthcare Outcomes
EHR electronic health record
FQHC federally qualified health center
HEDIS Healthcare Effectiveness Data and Information Set
HPM CARES Hospice and Palliative Medicine COVID-19 Action and Resilience Educational Support
MA Medicare Advantage
NQF National Quality Forum
PAF Patient Advocate Foundation
PCP primary care physician
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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SHARP Small, High Acuity/Risk Panel
VA U.S. Department of Veterans Affairs
VBID Value Based Insurance Design
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Integrating Serious Illness Care into Primary Care Delivery: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26411.
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Approximately five percent of Medicare beneficiaries (2.2 million Americans) are living with serious illness, as are many other non-Medicare eligible individuals. This number is expected to grow rapidly as the population ages and the prevalence of progressive illness increases. In many communities, particularly urban and rural underserved communities, primary care clinicians are the main workforce caring for people with serious illness, which underscores the need to integrate high quality serious illness care into primary care delivery.

To better understand the challenges and opportunities for integrating serious illness care into primary care settings, the National Academies of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a virtual workshop on June 10 and 17, 2021. The workshop, titled Integrating Serious Illness Care into Primary Care Delivery, explored the shared principles of primary and serious illness care, the interdisciplinary teams that power both disciplines, the policy issues that can act as barriers to or incentives for integration, and best practices for integrating primary care and serious illness care. This Proceedings of a Workshop summarizes the presentations and discussions that occurred during the workshop.

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