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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

Integrating the Patient
and Caregiver Voice into
Serious Illness Care

PROCEEDINGS OF A WORKSHOP

Laurene Graig and Joe Alper, Rapporteurs

Roundtable on Quality Care for People with Serious Illness

Board on Health Care Services

Board on Health Sciences Policy

Health and Medicine Division

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by contract No. HHSN263201200074I (Task Order No. HHSN26300096) with the National Institute of Nursing Research/National Institutes of Health, 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, Cambia Health Solutions, Cancer Support Community, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, Common Practice, Compassion & Choices, Dignity Health, Excellus BlueCross BlueShield, Federation of American Hospitals, Gordon and Betty Moore Foundation, The Greenwall Foundation, Health Care Chaplaincy Network, Hospice and Palliative Nurses Association, The John A. Hartford Foundation, Kaiser Permanente, 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, Oncology Nursing Society, Patient-Centered Outcomes Research Institute, The Pew Charitable Trusts, Social Work Hospice and Palliative Care Network, Supportive Care Coalition, Susan G. Komen, 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: 978-0-309-46028-6
International Standard Book Number-10: 0-309-46028-X
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the patient and caregiver voice into serious illness care: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/24802.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

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The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

PLANNING COMMITTEE FOR A WORKSHOP ON INTEGRATING THE PATIENT AND CAREGIVER VOICE INTO SERIOUS ILLNESS CARE1

REBECCA KIRCH (Co-Chair), Executive Vice President of Healthcare Quality and Value, National Patient Advocate Foundation

JOANNE REIFSNYDER (Co-Chair), Executive Vice President, Clinical Operations and Chief Nursing Officer, Genesis Healthcare, representing the Hospice and Palliative Nurses Association

RICHARD AVERBUCH, Executive Director, Massachusetts Coalition for Serious Illness Care

ROBERT BERGAMINI, Medical Director, Palliative Care Services, Mercy Clinic Children’s Cancer and Hematology, representing the Supportive Care Coalition

AMY BERMAN, Senior Program Officer, The John A. Hartford Foundation

KIM CALLINAN, Chief Program Officer, Compassion & Choices

KIMBERLY JOHNSON, Associate Professor, Duke University

BLYTH LORD, Executive Director, Courageous Parents Network

MURALI NAIDU, Vice President, Dignity Health

SHARON PEARCE, Vice President, Policy, National Hospice and Palliative Care Organization

JUDITH SALERNO, President and Chief Executive Officer, Susan G. Komen

KRISTEN SANTIAGO, Senior Director, Policy & Advocacy, Cancer Support Community

KATRINA SCOTT, Oncology Chaplain, Massachusetts General Hospital, representing the Association of Professional Chaplains

SUE SHERIDAN, Director, Patient-Centered Outcomes Research Institute

Project Staff

LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness

___________________

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. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

THELMA COX, Administrative Assistant

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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

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

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

PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield

KIMBERLY CALLINAN, Chief Program Officer, Compassion & Choices

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 Research Program, Patient-Centered Outcomes Research Institute

JEFF COHN, Medical Director, Common Practice

JANET CORRIGAN, Chief Program Officer, Patient Care Program, Gordon and Betty Moore Foundation

HELEN DARLING, Interim President and Chief Executive Officer, National Quality Forum

ANDREW DREYFUS, President and Chief Executive Officer, Blue Cross Blue Shield of Massachusetts

CAROLE REDDING FLAMM, Executive Medical Director, Blue Cross Blue Shield Association

___________________

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. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

STEPHEN FRIEDHOFF, Senior Vice President, Clinical Strategy and Programs, Anthem Inc.

MARK B. GANZ, President and Chief Executive Officer, Cambia Health Solutions

LEE GOLDBERG, Director, Improving End-of-Life Care Project, The Pew Charitable Trusts

REV. ERIC J. HALL, President and Chief Executive Officer, Health Care Chaplaincy Network

ZIAD 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, Professor, Department of Health Care Policy, Harvard Medical School

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, 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, National Institute of Nursing Research, National Institutes of Health

JAMES MITTELBERGER, Director and Chief Medical Officer, Center for Palliative and Supportive Care, Optum, UnitedHealth Group

R. SEAN MORRISON, Director, National Palliative Care Research Center

MURALI NAIDU, Vice President, Dignity Health

BRENDA NEVIDJON, Chief Executive Officer, Oncology Nursing Society

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

LYNNE S. PADGETT, Strategic Director, Hospital Systems, American Cancer Society

HAROLD L. PAZ, Executive Vice President and Chief Medical Officer, Aetna Inc.

SHARON SCRIBNER PEARCE, Vice President, Policy, National Hospice and Palliative Care Organization

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

JUDITH A. SALERNO, President and Chief Executive Officer, Susan G. Komen

KRISTIN SANTIAGO, Senior Director, Policy & Advocacy, Cancer Support Community

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

CHRISTIAN SINCLAIR, Assistant Professor, 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

THELMA COX, Administrative Assistant

SYLARA MARIE CRUZ, Research Assistant

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

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. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

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:

J. NICHOLAS DIONNE-ODOM, The University of Alabama at Birmingham

STACY FISCHER, University of Colorado Denver

RICHARD GOLDSTEIN, Harvard Medical School

ABBY R. ROSENBERG, Seattle Children’s Hospital

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 ERIC B. LARSON, Kaiser Foundation Health Plan of Washington. He was responsible for making certain that an

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.

Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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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 Rebecca Kirch and JoAnne Reifsnyder for their extremely valuable contributions to the development and orchestration of this workshop. We also wish to thank all the members of the planning committee who collaborated to ensure a full day of rich presentations and discussions. Finally, we want 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, Cambia Health Solutions, Cancer Support Community, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, Common Practice, Compassion & Choices, Dignity Health, Excellus BlueCross BlueShield, Federation of American Hospitals, Gordon and Betty Moore Foundation, The Greenwall Foundation, Health Care Chaplaincy Network, Hospice and Palliative Nurses Association, The John A. Hartford Foundation, Kaiser Permanente,

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
×

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, Oncology Nursing Society, Patient-Centered Outcomes Research Institute, The Pew Charitable Trusts, Social Work Hospice and Palliative Care Network, Supportive Care Coalition, Susan G. Komen, UnitedHealth Group, and the National Academy of Medicine.

Page xvii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Acronyms and Abbreviations

CHNA Community Health Needs Assessment
CMS Centers for Medicare & Medicaid Services
HOPE Hospice Outreach Program Effort
HSTA Health Sciences and Technology Academy
IOM Institute of Medicine
MOLST medical orders for life-sustaining treatment
NICU neonatal intensive care unit
NINR National Institute of Nursing Research
PEL Partnership for Elder Living
POLST physician orders for life-sustaining treatment
PSA public service announcement
UAB The University of Alabama at Birmingham
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24802.
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Millions of people—infants, children, adults, and their families—are currently coping with serious illness in the United States. Efforts are intensifying to improve overall care quality through the delivery of person-centered and family-oriented services, for patients of all ages and across disease stages, care settings, and specialties. While aging Baby Boomers are increasing the proportion of patients in the Medicare population over time, the sickest and most vulnerable patients needing health system support and other services to meet their complex needs can be found across the age spectrum and in a broad range of care settings, from perinatal care to geriatric care.

Recognizing the need to thoughtfully consider and address the challenges and opportunities in efforts to improve care quality and value, the Roundtable on Quality Care for People with Serious Illness of the National Academies of Sciences, Engineering, and Medicine held the public workshop Integrating the Patient and Caregiver Voice into Serious Illness Care, on December 15, 2016, in Washington, DC. This workshop was the first in a series planned by the roundtable, and was designed specifically to bring together diverse personal perspectives and experiences about priorities and values that are important to patients and families coping with serious illness, and to consider solutions that support integration of these priorities and values in practice. This publication summarizes the presentations and discussions from the workshop.

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