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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25350.
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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.

Integrating Health Care and Social Services 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. HHSN263201200074I (Task Order No. HHSN26300096) 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, Common Practice, Excellus BlueCross BlueShield, Federation of American Hospitals, The 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, New York Academy of Medicine, Oncology Nursing Society, Patient-Centered Outcomes Research Institute, Social Work Hospice and Palliative Care Network, Supportive Care Coalition, UnitedHealth Group, 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/10.17226/25350 Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 100, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. 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. 2018. Integrating health care and social services for people with serious illness: Proceedings of a workshop. Washington, DC: The National Academies Press. doi:10.17226/25350. 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. C. D. Mote, Jr., 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 INTEGRATING HEALTH CARE AND SOCIAL SERVICES FOR PEOPLE WITH SERIOUS ILLNESS1 JOANNE LYNN (Co-Chair), Director, Center for Elder Care and Advanced Illness, Altarum Institute JUDITH R. PERES (Co-Chair), Long-Term and Palliative Care Consultant, Clinical Social Worker and Board Member, Social Work Hospice and Palliative Care Network ROBERT A. BERGAMINI, Medical Director, Palliative Care Services, Mercy Clinic Children’s Cancer and Hematology, representing the Supportive Care Coalition AMY J. BERMAN, Senior Program Officer, The John A. Hartford Foundation 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 SUTEP LAOHAVANICH, Program Officer, Gordon and Betty Moore Foundation 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 SHARON SCRIBNER PEARCE, Vice President, Policy, National Hospice and Palliative Care Organization JOANNE REIFSNYDER, Executive Vice President, Clinical Operations and Chief Nursing Officer, Genesis Healthcare, representing the Hospice and Palliative Nurses Association KATRINA M. SCOTT, Oncology Chaplain, Massachusetts General Hospital, representing the Association of Professional Chaplains JOSEPH W. SHEGA, Regional Medical Director, VITAS Hospice Care, representing the American Geriatrics Society TANYA STEWART, Senior Medical Director, UnitedHealthcare Retiree Solutions Project Staff LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness SYLARA MARIE CRUZ, Research Assistant SHARYL NASS, Director, Board on Health Care Services, and Director, National Cancer Policy Forum 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. PREPUBLICATION COPY: UNCORRECTED PROOFS v

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, The 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 AMY J. BERMAN, Senior Program Officer, The John A. Hartford Foundation 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 STEVE CLAUSER, Program Director, Improving Healthcare Systems, Patient-Centered Outcomes Research Institute JEFF COHN, Medical Director, Common Practice 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 Company ANDREW DREYFUS, President and Chief Executive Officer, Blue Cross Blue Shield of Massachusetts CAROLE REDDING FLAMM, Executive Medical Director, Office of Clinical Affairs, 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 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. PREPUBLICATION COPY: UNCORRECTED PROOFS vii

REBECCA A. KIRCH, Executive Vice President of Healthcare Quality and Value, National Patient Advocate Foundation TOM KOUTSOUMPAS, Co-Founder, Coalition to Transform Advanced Care SHARI M. LING, Deputy Chief Medical Officer, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services BERNARD LO, President and Chief Executive Officer, The 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 and Palliative Care Network 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 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, Quality Innovation, National Quality Forum JUDITH A. SALERNO, President, 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, Inc. 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 Health System, representing the American Academy of Hospice and Palliative Medicine TANYA STEWART, Senior Medical Director, UnitedHealthcare Retiree Solutions 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 Assistant MICAH WINOGRAD, Financial Associate SHARYL NASS, Director, Board on Health Care Services, and Director, National Cancer Policy Forum PREPUBLICATION COPY: UNCORRECTED PROOFS viii

ANDREW M. POPE, Director, Board on Health Sciences Policy PREPUBLICATION COPY: UNCORRECTED PROOFS ix

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: AMANDA BREWSTER, University of California, Berkeley LEN NICHOLS, George Mason University ROBYN STONE, LeadingAge SARAH SZANTON, Johns Hopkins Bloomberg School of Public Health 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 ELIZABETH BRADLEY, Vassar College. She 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. PREPUBLICATION COPY: UNCORRECTED PROOFS xi

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 Joanne Lynn and Judith Peres for their valuable contributions to the development and organization 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, the roundtable would like 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 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, 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, Common Practice, Excellus BlueCross BlueShield, Federation of American Hospitals, The 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, New York Academy of Medicine, Oncology Nursing Society, Patient-Centered Outcomes Research Institute, Social Work Hospice and Palliative Care Network, Supportive Care Coalition, UnitedHealth Group, and the National Academy of Medicine. PREPUBLICATION COPY: UNCORRECTED PROOFS xiii

Contents ACRONYMS AND ABBREVIATIONS xix Proceedings of a Workshop 1 INTRODUCTION 1 Organization of Workshop and Proceedings, 3 PATIENT AND FAMILY CAREGIVER PERSPECTIVE 8 FRAMING THE ISSUES OF INTEGRATING HEALTH CARE AND SOCIAL SERVICES FOR PEOPLE WITH SERIOUS ILLNESS: GAPS, CHALLENGES, AND OPPORTUNITIES 10 Funding Investments in Social Services, 11 Building a Strong Social Support Infrastructure, 14 Discussion, 17 EXPLORING THE KEY ROLE AND UNIQUE NEEDS OF CAREGIVERS 18 Caregiving for the Seriously Ill: Overview and Impacts, 19 The Experience of Caregiving for People with Serious Illness, 22 Policy Considerations, 23 Caring Across Generations, 25 Moving Toward a More Supportive Care Delivery Paradigm, 27 Discussion, 30 INNOVATIVE PARTNERSHIPS AND COLLABORATIONS FOR INTEGRATING SERVICES 32 Program of All-Inclusive Care for the Elderly (PACE), 32 Building a Bridge to Better Outcomes, 34 Palliative Care and Social Services for the Most Vulnerable, 37 Community Aging in Place—Advancing Better Living for Elders (CAPABLE), 39 Discussion, 41 EXPLORING POTENTIAL POLICY CHALLENGES AND OPPORTUNITIES FOR INTEGRATING HEALTH CARE AND SOCIAL SERVICES NATIONWIDE 43 Discussion, 46 Forging a Way Forward, 47 Closing Remarks, 48 REFERENCES 48 APPENDIX A: Statement of Task 53 APPENDIX B: Workshop Agenda 55 PREPUBLICATION COPY: UNCORRECTED PROOFS xv

Boxes and Figures BOXES 1 Key Definitions, 2 2 Suggestions Made by Individual Workshop Participants for Integrating Health Care and Social Services for People with a Serious Illness, 4 3 Paul’s Story, 37 FIGURES 1 Caregiver tasks and health effects associated with the longitudinal trajectory of care, 20 2 Percentage of older adults with unmet needs, 21 3 Jobs of the future, 26 4 Framework for caregiver interventions, 28 5 PACE Interdisciplinary Team, 33 6 Safety net palliative care, 38 7 Improvement from baseline to follow up, 40 PREPUBLICATION COPY: UNCORRECTED PROOFS xvii

Acronyms and Abbreviations ACO accountable care organization ADL activity of daily living CAPABLE Community Aging in Place—Advancing Better Living for Elders CCTP community-based care transitions program CHRONIC Creating High-Quality Results and Outcomes Necessary to Improve Chronic Care Act of 2017 CMS Centers for Medicare & Medicaid Services EHR electronic health record FMLA Family and Medical Leave Act GDP gross domestic product HMO health maintenance organization IADL instrumental activity of daily living IOM Institute of Medicine NHATS National Health and Aging Trends Study OECD Organisation for Economic Co-operation and Development PACE Program of All-Inclusive Care for the Elderly PTSD posttraumatic stress disorder RAISE Recognize, Assist, Include, Support, and Engage Family Caregivers Act UCLA University of California, Los Angeles PREPUBLICATION COPY: UNCORRECTED PROOFS xix

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A growing body of research indicates that social determinants of health have a significant impact on health care utilization and outcomes. Researchers and policymakers in the United States have spent decades exploring and discussing approaches to integrating health care and social services. While no nation has a truly integrated system, many other industrialized nations invest more heavily in social services than the United States, and are more effective in integrating these services with health care. Integrating health care and social services, such as accessible housing, meals and nutrition services, transportation, and caregiver training, is particularly important for those facing serious illness who typically encounter multiple chronic conditions, pain and other symptoms, functional dependency, frailty, and significant family caregiver needs.

In an effort to better understand and facilitate discussions about the challenges and opportunities related to integrating health care and social services for people with serious illness, the National Academies of Sciences, Engineering, and Medicine held a full-day public workshop on July 19, 2018 in Washington, DC. The workshop featured a broad range of experts and stakeholders including researchers, policy analysts, patient and family caregiving advocates, and representatives of federal agencies. This publication summarizes the presentations and discussions from the workshop.

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