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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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
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. 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 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.
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.
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.
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
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.
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
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
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
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
National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
Acknowledgments
The National Academies of Sciences, Engineering, and Medicine’s Roundtable on Quality Care for People with Serious Illness wishes to express its sincere gratitude to the Planning Committee Co-Chairs 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,
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.
Contents
Organization of the Workshop and Proceedings
PATIENT AND FAMILY CAREGIVER PERSPECTIVE
Funding Investments in Social Services
Building a Strong Social Support Infrastructure
EXPLORING THE KEY ROLE AND UNIQUE NEEDS OF CAREGIVERS
Caregiving for the Seriously Ill: Overview and Impacts
The Experience of Caregiving for People with Serious Illness
This page intentionally left blank.
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 |
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 |