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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.
×

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

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

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.
×

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, The 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: 978-0-309-48816-7
International Standard Book Number-10: 0-309-48816-8
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Suggested citation: 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.

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.
×

Image

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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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.

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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. 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.
×

Image

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.

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.
×

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

___________________

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. 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.
×

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

RAJBIR KAUR, Senior Program 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

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.
×

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, 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.

___________________

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. 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.
×

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, 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

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

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.
×

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, 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 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

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.
×

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

RAJBIR KAUR, Senior Program Assistant

MICAH WINOGRAD, Financial Associate

SHARYL NASS, Director, Board on Health Care Services, and Director, National Cancer Policy Forum

ANDREW M. POPE, Director, Board on Health Sciences Policy

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.
×

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:

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

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.
×

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. 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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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, 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,

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.
×

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, UnitedHealth Group, and the National Academy of Medicine.

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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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Acronyms and Abbreviations

ACO accountable care organization
ADL activity of daily living
CAPABLE Community Aging in Place—Advancing Better Living for Elders
CARE Caregiver Advise, Record, Enable Act
CC chronic condition
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
DEM dementia
EHR electronic health record
EOL end of life
FMLA Family and Medical Leave Act
GDP gross domestic product
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.
×
HCBS home- and community-based services
HCFA Health Care Financing Administration
HHS Health and Human Services
HMO health maintenance organization
IADL instrumental activity of daily living
IOM Institute of Medicine
LTSS long-term services and supports
NHATS National Health and Aging Trends Study
NSOC National Study of Caregiving
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
VA Department of Veterans Affairs
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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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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