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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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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

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

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

Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313.

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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.

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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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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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

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Suggested Citation:"Front Matter." 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. doi: 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.

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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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.

Page viii Cite
Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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.

Page xiii Cite
Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
×

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

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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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.

Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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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
Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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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
Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25530.
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The Centers for Disease Control and Prevention estimates that approximately 40 million people in the United States suffer from a serious illness that limits their daily activities. These illnesses include heart and lung disease, cancer, diabetes, and Alzheimer’s disease and other forms of dementia. However, significant disparities exist across different communities in the quality and access to care for these illnesses. Factors such as race, ethnicity, gender, geography, socioeconomic status, or insurance status exacerbate these complex disparities. It is critical to reevaluate the current models of care delivery across diverse communities and vulnerable populations.

On April 4, 2019, The National Academies of Sciences, Engineering, and Medicine convened a workshop to investigate barriers, policy initiatives, and opportunities for improving access to and equity of care for people living with a serious illness. Discussions explored the current climate of health care and opportunities to improve access to care using organizational, community, patient and family, and clinician perspectives. This publication summarizes the discussions and presentations from the workshop.

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