Improving Access to
and Equity of Care for
People with Serious Illness
PROCEEDINGS OF A WORKSHOP
Laurene Graig, Sylara Marie Cruz, 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 Contract No. HHSN263201800029I (Task Order No. 75N98019F00851) with the National Institutes of Health’s National Institute of Nursing Research and by Aetna Inc., Altarum Institute, American Academy of Hospice and Palliative Medicine, American Cancer Society, American Geriatrics Society, Anthem Inc., Ascension Health, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, Blue Cross and Blue Shield of North Carolina, Bristol-Myers Squibb, The California State University Shiley Institute for Palliative Care, Cambia Health Solutions, Cedars-Sinai Health System, Center to Advance Palliative Care, Centers for Medicare & Medicaid Services, Coalition to Transform Advanced Care, Excellus BlueCross BlueShield, Federation of American Hospitals, Greenwall Foundation, The John A. Hartford Foundation, Hospice & Palliative Nurses Association, Kaiser Permanente, Susan G. Komen, Gordon and Betty Moore Foundation, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Palliative Care Research Center, National Patient Advocate Foundation, National Quality Forum, The New York Academy of Medicine, Oncology Nursing Society, Patient-Centered Outcomes Research Institute, Social Work Hospice & Palliative Care Network, Supportive Care Coalition, 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: 978-0-309-49589-9
International Standard Book Number-10: 0-309-49589-X
Digital Object Identifier: https://doi.org/10.17226/25530
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2019. Improving access to and equity of care for people with serious illness: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25530.
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PLANNING COMMITTEE FOR A WORKSHOP ON IMPROVING ACCESS TO AND EQUITY OF CARE FOR PEOPLE WITH SERIOUS ILLNESS1
DARCI GRAVES (Co-Chair), Special Assistant to the Director, Office of Minority Health, Centers for Medicare & Medicaid Services
PEGGY MAGUIRE (Co-Chair), President and Board Chair, Cambia Health Foundation
KIMBERLY D. ACQUAVIVA, Professor, The George Washington University School of Nursing
ROBERT A. BERGAMINI, Medical Director, Palliative Care Services, Mercy Clinic Children’s Cancer and Hematology, representing the Supportive Care Coalition
SHONTA CHAMBERS, Executive Vice President of Health Equity Initiatives and Community Engagement, Patient Advocate Foundation
MARSHALL CHIN, Richard Parrillo Family Professor of Healthcare Ethics, Department of Medicine, The University of Chicago Pritzker School of Medicine
ZIAD R. HAYDAR, Senior Vice President and Chief Clinical Officer, Ascension Health
HAIDEN HUSKAMP, 30th Anniversary Professor of Health Care Policy, Harvard Medical School
KIMBERLY JOHNSON, Associate Professor of Medicine, Senior Fellow in the Center for the Study of Aging and Human Development, Duke University School of Medicine
DIANE E. MEIER, Director, Center to Advance Palliative Care
THOMAS M. PRISELAC, President and Chief Executive Officer, Cedars-Sinai Health System
JOANNE REIFSNYDER, Executive Vice President, Clinical Operations and Chief Nursing Officer, Genesis Healthcare, representing the Hospice & Palliative Nurses Association
___________________
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.
SUSAN ELIZABETH WANG, Regional Lead for Shared Decision-Making and Advance Care Planning, Southern California Permanente Medical Group, Kaiser Permanente
Project Staff
LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness
SYLARA MARIE CRUZ, Research Associate (until October 2019)
RAJBIR KAUR, Senior Program Assistant (until October 2019)
SHARYL NASS, Director, Board on Health Care Services, and Director, National Cancer Policy Forum
INDIA OLCHEFSKE, Research Associate (until June 2019)
ANDREW M. POPE, Director, Board on Health Sciences Policy
Consultant
JOE ALPER, Consulting Writer
ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS1
LEONARD D. SCHAEFFER (Chair), Judge Robert Maclay Widney Chair and Professor, University of Southern California
JAMES A. TULSKY (Vice 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, California State University Institute for Palliative Care
ROBERT A. BERGAMINI, Medical Director, Palliative Care Services, Mercy Clinic Children’s Cancer and Hematology, representing the Supportive Care Coalition
LORI BISHOP, Vice President of Palliative and Advanced Care, National Hospice and Palliative Care Organization
PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield
SUSAN BROWN, Senior Director, Health Education, Susan G. Komen
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, Program Officer, The John A. Hartford Foundation
STEVEN CLAUSER, Director, Healthcare Delivery and Disparities Research Program, Patient-Centered Outcomes Research Institute
DAVID J. DEBONO, National Medical Director for Oncology, Anthem Inc.
CHRISTOPHER M. DEZII, Lead, Quality and Measure Development, State and Federal Payment Agencies, U.S. Value, Access and Payment, Bristol-Myers Squibb
ANDREW DREYFUS, President and Chief Executive Officer, Blue Cross Blue Shield of Massachusetts
___________________
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
MARK B. GANZ, President and Chief Executive Officer, Cambia Health Solutions
ZIAD R. HAYDAR, Senior Vice President and Chief Clinical Officer, Ascension Health
PAMELA S. HINDS, Director of Nursing Research and Quality Outcomes, Children’s National Health System
HAIDEN HUSKAMP, 30th Anniversary Professor of Health Care Policy, Harvard Medical School
KIMBERLY JOHNSON, Associate Professor of Medicine, Senior Fellow in the Center for the Study of Aging and Human Development, Duke University School of Medicine
CHARLES N. KAHN III, President and Chief Executive Officer, Federation of American Hospitals
REBECCA A. KIRCH, Executive Vice President of Healthcare Quality and Value, National Patient Advocate Foundation
TOM KOUTSOUMPAS, Cofounder, Coalition to Transform Advanced Care
SHARI M. LING, Deputy Chief Medical Officer, Centers for Medicare & Medicaid Services
BERNARD LO, President and Chief Executive Officer, Greenwall Foundation
JOANNE LYNN, Director, Center for Elder Care and Advanced Illness, Altarum Institute
DIANE E. MEIER, Director, Center to Advance Palliative Care
AMY MELNICK, Executive Director, National Coalition for Hospice and Palliative Care
JERI L. MILLER, Chief, Office of End-of-Life and Palliative Care Research and Senior Policy Analyst, Division of Extramural Science Programs, National Institute of Nursing Research, National Institutes of Health
R. SEAN MORRISON, Director, National Palliative Care Research Center
BRENDA NEVIDJON, Chief Executive Officer, Oncology Nursing Society
HAROLD L. PAZ, Executive Vice President and Chief Medical Officer, Aetna Inc.
JUDITH R. PERES, Long-term and Palliative Care Consultant, Clinical Social Worker and Board Member, Social Work Hospice & Palliative Care Network
PHILLIP A. PIZZO, Founding Director, Stanford Distinguished Careers Institute; Former Dean, Stanford School of Medicine and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology, Stanford School of Medicine
THOMAS M. PRISELAC, President and Chief Executive Officer, Cedars-Sinai Health System
RAHUL RAJKUMAR, Senior Vice President and Chief Medical Officer, Blue Cross and Blue Shield of North Carolina
JOANNE REIFSNYDER, Executive Vice President, Clinical Operations and Chief Nursing Officer, Genesis Healthcare, representing the Hospice & Palliative Nurses Association
RACHEL ROILAND, Director, Serious Illness Care Initiative, National Quality Forum
JUDITH A. SALERNO, President, The New York Academy of Medicine
DIANE SCHWEITZER, Acting Chief Program Officer, Patient Care Program, Gordon and Betty Moore Foundation
KATRINA M. SCOTT, Oncology Chaplain, Massachusetts General Hospital, representing the Association of Professional Chaplains
KATHERINE SHARPE, Senior Vice President, Patient and Caregiver Support, American Cancer Society
JOSEPH W. SHEGA, Regional Medical Director, VITAS Hospice Care, representing the American Geriatrics Society
CHRISTIAN SINCLAIR, Outpatient Palliative Oncology Lead, Division of Palliative Medicine, University of Kansas Medical Center, representing the American Academy of Hospice and Palliative Medicine
SUSAN ELIZABETH WANG, Regional Lead for Shared Decision-Making and Advance Care Planning, 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
SYLARA MARIE CRUZ, Research Associate (until October 2019)
KAITLYN FRIEDMAN, Research Associate (as of July 2019)
RAJBIR KAUR, Senior Program Assistant (until October 2019)
MICAH WINOGRAD, Financial Officer
SHARYL NASS, Director, Board on Health Care Services, and Director, National Cancer Policy Forum
INDIA OLCHEFSKE, Research Associate (until June 2019)
ANDREW M. POPE, Director, Board on Health Sciences Policy
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:
SARAH DOWNER, Health Law and Policy Clinic, Harvard Law School
EDWARD MACHTINGER, Center to Advance Trauma-informed Health Care, University of California, San Francisco
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 JOHN AYANIAN, Institute for Healthcare Policy & Innovation, University of Michigan. 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 Darci Graves and Peggy Maguire 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 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 the roundtable’s work. The sponsors include Aetna Inc., Altarum Institute, American Academy of Hospice and Palliative Medicine, American Cancer Society, American Geriatrics Society, Anthem Inc., Ascension Health, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, Blue Cross and Blue Shield of North Carolina, Bristol-Myers Squibb, The California State University Shiley Institute for Palliative Care, Cambia Health Solutions, Cedars-Sinai Health System, Center to Advance Palliative Care, Centers for Medicare & Medicaid Services, Coalition to Transform Advanced Care, Excellus BlueCross BlueShield, Federation of American Hospitals, Greenwall Foundation, The John A. Hartford
Foundation, Hospice & Palliative Nurses Association, Kaiser Permanente, Susan G. Komen, Gordon and Betty Moore Foundation, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Institute of Nursing Research, National Palliative Care Research Center, National Patient Advocate Foundation, National Quality Forum, The New York Academy of Medicine, Oncology Nursing Society, Patient-Centered Outcomes Research Institute, Social Work Hospice & Palliative Care Network, Supportive Care Coalition, and the National Academy of Medicine.
Contents
UNDERSTANDING THE CONTEXT FOR IMPROVING ACCESS TO AND EQUITY OF CARE FOR PEOPLE WITH SERIOUS ILLNESS
A Patient’s Perspective on Access to and Equity of Care for People with Serious Illness
Lessons Learned for Achieving Health Equity Across Diverse Populations
Disparities in Serious Illness Care for African Americans
Trauma-Informed Health Care: A Powerful Tool to Reduce Disparities in Health
Whole Kids Outreach: Helping to Meet the Needs of Children with Complex Medical Problems
Chinese American Coalition for Compassionate Care
Communication Can Drive Health Equity in Serious Illness Care
Cancer Care and the LGBT Community
A View from the Safety Net: San Francisco Health Network
A POLICY AGENDA TO IMPROVE ACCESS TO CARE AND ACHIEVE HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS
Addressing Disparities for Vulnerable Populations
Addressing the High Cost of Serious Illness Care
Policy Approaches to Improving Access to Care for People with Serious Illness
Potential Next Steps to Advance Access and Equity
Boxes and Figures
BOXES
2 Advancing Health Equity: Roadmap for Reducing Disparities
FIGURES
1 A social ecological model for improving access to care and achieving health equity
2 5-year survival for cervical/uterine cancer
3 Hospice enrollment by race for Medicare beneficiaries
4 An evidence-based model for trauma-informed health care
5 A model to explain how communication enables goal-concordant care
Acronyms and Abbreviations
ACA | Patient Protection and Affordable Care Act |
ACE | adverse childhood experience |
ACP | advance care planning |
CACCC | Chinese American Coalition for Compassionate Care |
CEP | Community Empowerment Partner |
CHW | community health worker |
CMS | Centers for Medicare & Medicaid Services |
C-TAC | Coalition to Transform Advanced Care |
ECANA | Endometrial Cancer Action Network for African-Americans |
FPL | federal poverty level |
HCBS | home- and community-based services |
IOM | Institute of Medicine |
LGBT | lesbian, gay, bisexual, and transgender |
LTSS | long-term services and supports |
NHPCO | National Hospice and Palliative Care Organization |
NIH | National Institutes of Health |
NP | nurse practitioner |
NQF | National Quality Forum |
PA | physician assistant |
PCORI | Patient-Centered Outcomes Research Institute |
RWJF | Robert Wood Johnson Foundation |
SFHN | San Francisco Health Network |
UCSF | University of California, San Francisco |