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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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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.
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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.
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
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.
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
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
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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
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 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
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.
Contents
CREATING A BETTER FUTURE FOR THOSE WITH SERIOUS ILLNESS
EXPLORING THE SHARED PRINCIPLES OF SERIOUS ILLNESS CARE AND PRIMARY CARE
Providing Compassionate, Patient-Centered Care for Individuals with Serious Illness
Normalizing Needs Navigation for All
Clinical Practice Guidelines for Quality Palliative Care
The Bridge Between Primary Care and Palliative Care
An Innovative Approach to Caring for High-Risk Patients
A Social Work Perspective on Interdisciplinary Team-Based Care
Advance Care Planning Shared Decision-Making Tools
Creating a Primary Care Team to Provide End-of-Life Care
WHAT PEOPLE WITH SERIOUS ILLNESS NEED FROM PRIMARY CARE: A PATIENT’S PERSPECTIVE
Integrating Serious Illness Care into Primary Care Delivery: Focus on Quality
Congressional Action to Improve Care for People with Serious Illness
Palliative Care and Serious Disease Management in Primary Care
PROMISING INTEGRATED CARE MODELS
Serious Illness Conversations in Federally Qualified Health Centers
Transforming Urgent Care for Veterans with Serious Illness
The CARIÑOS Approach: Caring for Persons with Serious Illness
Box, Figures, and Table
BOX
FIGURES
2 A stepwise, team-based approach to screening for unmet needs
3 The National Quality Forum measurement framework for palliative care
TABLE
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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 |
SHARP | Small, High Acuity/Risk Panel |
VA | U.S. Department of Veterans Affairs |
VBID | Value Based Insurance Design |