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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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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
Digital Object Identifier: https://doi.org/10.17226/24802
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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.
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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.
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
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.
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
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
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:
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
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 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,
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.
Contents
The Evolving Landscape of Serious Illness Care
Personal Perspectives on the Essential Elements of Optimal Care
EXPANDING ACCESS TO PALLIATIVE CARE
Consistent Messaging About Palliative Care
Developing Primary Palliative Care Skills
ADDRESSING SOCIOCULTURAL DIFFERENCES AND NEEDS IN UNDERSERVED COMMUNITIES
Improving Quality of Life and Health Outcomes for Latino Populations
The Experience of African Americans with Serious Illness
Community Engagement Strategies in Rural Communities
ADDRESSING SERIOUS ILLNESS IN PERINATAL AND NEONATAL CARE SETTINGS
ADDRESSING IMPAIRMENTS THROUGH THE INTEGRATION OF PREHABILITATION AND REHABILITATION SERVICES
SUPPORTING SPIRITUAL, SOCIAL, AND PSYCHOLOGICAL NEEDS
Addressing Suffering Through Spirituality Support
Cultural Humility and Spirituality
PRIORITIZING COMMUNICATION AND CONNECTIONS
Learning Person-Centered Communication Skills
TOOLS THAT HELP MATCH TREATMENTS TO VALUES
Engaging People in Their Own Care: The Conversation Project
Teaching Behaviors That Improve Conversation: Common Practice’s “Hello”
Supporting Advance Care Planning Through Online Skills-Building Tools: PREPARE
Using Market Research to Find Out What People Want
Boxes, Figures, and Table
BOXES
1 Suggestions Made by Individual Workshop Participants
FIGURES
1 Culturally tailored patient navigation improves advance care planning among Latinos
2 Culturally tailored patient navigation improves hospice and end-of-life care usage among Latinos
3 Proportion of Medicare decedents enrolled in hospice by race
4 Screenshot of prepareforyourcare.org
TABLE
1 Projects to Provide Advance Care for Rural West Virginians with Serious Illnesses
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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 |
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