National Academies Press: OpenBook
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.
×
Page R1
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.
×
Page R2
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.
×
Page R3
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.
×
Page R4
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.
×
Page R5
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.
×
Page R6
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.
×
Page R7
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.
×
Page R8
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.
×
Page R9
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.
×
Page R10
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.
×
Page R11
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.
×
Page R12
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.
×
Page R13
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.
×
Page R14
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.
×
Page R15
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.
×
Page R16
Page xvii 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.
×
Page R17
Page xviii 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.
×
Page R18

Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

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 PREPUBLICATION COPY: UNCORRECTED PROOFS

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, 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 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 and 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 and 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-XXXXX-X International Standard Book Number–10: 0-309-XXXXX-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. Copyright 2019 by the National Academy of Sciences. All rights reserved. Printed in the United States of America 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. PREPUBLICATION COPY: UNCORRECTED PROOFS

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. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY: UNCORRECTED PROOFS

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. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY: UNCORRECTED PROOFS

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, 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 and Palliative Nurses Association 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 RAJBIR KAUR, Senior Program Assistant 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 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. v PREPUBLICATION COPY: UNCORRECTED PROOFS

ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS11 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 PATRICK CONWAY, President and Chief Executive Officer, Blue Cross and Blue Shield of North Carolina 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 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 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. vii PREPUBLICATION COPY: UNCORRECTED PROOFS

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 and 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 JOANNE REIFSNYDER, Executive Vice President, Clinical Operations and Chief Nursing Officer, Genesis Healthcare, representing the Hospice and 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 KAITLYN FRIEDMAN, Research Associate (as of July 2019) RAJBIR KAUR, Senior Program Assistant 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 viii PREPUBLICATION COPY: UNCORRECTED PROOFS

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: Edward Machtinger, Center to Advance Trauma-informed Health Care, University of California, San Francisco Sarah Downer, Health Law and Policy Clinic, Harvard Law School 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 and 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. ix PREPUBLICATION COPY: UNCORRECTED PROOFS

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 the members of the planning committee, who collaborated to ensure a workshop complete with informative presentations and rich discussions. Finally, to 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 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 and 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 and Palliative Care Network, Supportive Care Coalition, and the National Academy of Medicine. xi PREPUBLICATION COPY: UNCORRECTED PROOFS

Contents ACRONYMS AND ABBREVIATIONS INTRODUCTION 1 UNDERSTANDING THE CONTEXT FOR IMPROVING ACCESS TO AND EQUITY OF CARE FOR PEOPLE WITH SERIOUS ILLNESS 6 A Patient’s Perspective on Access to and Equity of Care for People with Serious Illness, 6 Lessons Learned for Achieving Health Equity Across Diverse Populations, 7 Disparities in Serious Illness Care for African Americans, 10 Trauma-Informed Health Care: A Powerful Tool to Reduce Disparities in Health, 12 Discussion, 17 IMPROVING ACCESS TO CARE AND ACHIEVING HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS: ORGANIZATIONAL AND COMMUNITY PERSPECTIVES 19 Whole Kids Outreach: Helping to Meet the Needs of Children with Complex Medical Problems, 19 Familias en Acción, 21 Chinese American Coalition for Compassionate Care, 22 Discussion, 23 ACHIEVING HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS: PATIENT/FAMILY AND CLINICIAN PERSPECTIVES 24 Communication Can Drive Health Equity in Serious Illness Care, 25 Cancer Care and the LGBT Community, 27 A View from the Safety Net: San Francisco Health Network, 31 Discussion, 34 A POLICY AGENDA TO IMPROVE ACCESS TO CARE AND ACHIEVE HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS 35 Addressing Disparities for Vulnerable Populations, 36 Addressing the High Cost of Serious Illness Care, 40 Policy Approaches to Improving Access to and Equity of Care for People with Serious Illness, 41 Discussion, 42 POTENTIAL NEXT STEPS FOR IMPLEMENTING SOLUTIONS TO IMPROVE ACCESS TO CARE AND ACHIEVE HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS 44 Potential Next Steps to Advance Access and Equity, 46 Leveraging Connections and Developing Partnerships, 48 Closing Remarks, 48 REFERENCES 49 APPENDIX A Statement of Task 59 APPENDIX B Workshop Agenda 61 xiii PREPUBLICATION COPY: UNCORRECTED PROOFS

Boxes and Figures BOXES 1 Suggestions Made by Individual Workshop Participants for Improving Access to and Equity of Care for People with Serious Illness, 3 2 Advancing Health Equity: Roadmap for Reducing Disparities, 8 FIGURES 1 A social ecological model for improving access to care and achieving health equity, 2 2 5-year survival for cervical/uterine cancer, 10 3 Hospice enrollment by race for Medicare beneficiaries, 11 4 An evidence-based model for trauma-informed health care, 16 5 A model to explain how communication enables goal-concordant care, 26 6 The cancer continuum, with each phase marked by different issues that are usually addressed by different providers, 28 7 The cancer experience of LGBT individuals, reflecting that the challenges they face are not limited to one phase, 29 8 Individuals seen in safety net systems have a multiplicity of needs, based on a survey of approximately 1,000 parents of children treated in a safety net pediatric clinic, 32 9 San Francisco Health Network primary care behavioral health teams, 33 10 Number of states covering home- and community-based services as of FY2017, 37 11 Most Medicaid eligibility pathways for seniors and people with disabilities are option for states, 37 12 Share of total FY2016 Medicaid spending on LTSS devoted to home- and community-based health care, 38 13 Nearly 1 in 10 Medicare Part D enrollees had drug spending above the catastrophic coverage limit in 2016, but not all received low-income subsidies, 39 xv PREPUBLICATION COPY: UNCORRECTED PROOFS

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 CDC Centers for Disease Control and Prevention CEP Community Empowerment Partners 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 SAMHSA Substance Abuse and Mental Health Services Administration SFHN San Francisco Health Network UCSF University of California, San Francisco xvii PREPUBLICATION COPY: UNCORRECTED PROOFS

Next: Proceedings of a Workshop »
Improving Access to and Equity of Care for People with Serious Illness: Proceedings of a Workshop Get This Book
×
Buy Paperback | $50.00
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

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.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  6. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  7. ×

    View our suggested citation for this chapter.

    « Back Next »
  8. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!