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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

Models and Strategies to
Integrate Palliative Care
Principles into Care for
People with Serious Illness

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
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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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: 978-0-309-46611-0
International Standard Book Number-10: 0-309-46611-3
Digital Object Identifier: https://doi.org/10.17226/24908

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. Models and strategies to integrate palliative care principles into care for people with serious illness: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/24908.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

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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. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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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. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

PLANNING COMMITTEE FOR A WORKSHOP ON MODELS AND STRATEGIES TO INTEGRATE PALLIATIVE CARE PRINCIPLES INTO CARE FOR PEOPLE WITH SERIOUS ILLNESS1

DIANE MEIER (Co-Chair), Director, Center to Advance Palliative Care

BRENDA NEVIDJON (Co-Chair), Chief Executive Officer, Oncology Nursing Society

ROBERT 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

LESLIE BLACKHALL, Associate Professor of Internal Medicine and Section Head for Palliative Care, University of Virginia Health System

GRACE B. CAMPBELL, Assistant Professor, Department of Acute and Tertiary Care, University of Pittsburgh School of Nursing, representing the Association of Rehabilitation Nurses

JEFF COHN, Medical Director, Common Practice

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

SUSAN ENGUIDANOS, Associate Professor, Davis School of Gerontology, University of Southern California

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

SARAH HILL, Director, Palliative Care, Ascension Health

HAIDEN HUSKAMP, Professor, Department of Health Care Policy, Harvard Medical School

CHARLES N. KAHN III, President and Chief Executive Officer, Federation of American Hospitals

JEAN KUTNER, Chief Medical Officer, University of Colorado Hospital, Professor of Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine

___________________

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. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

JOANNE LYNN, Director, Center for Elder Care and Advanced Illness, Altarum Institute

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

JUDITH R. PERES, Long Term and Palliative Care Consultant, Clinical Social Worker and Board Member, Social Work Hospice and Palliative Care Network

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

Project Staff

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

SYLARA MARIE CRUZ, Research Assistant (as of April 2017)

THELMA COX, Administrative Assistant (until April 2017)

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. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

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

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

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

STEPHEN FRIEDHOFF, Senior Vice President, Clinical Strategy and Programs, 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. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

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 (through July 2017)

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

MURALI NAIDU, Vice President, Dignity Health (through May 2017)

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

BRENDA NEVIDJON, Chief Executive Officer, Oncology Nursing Society

LYNNE S. PADGETT, Strategic Director, Hospital Systems, American Cancer Society (through June 2017)

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, Stanford School of Medicine and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology

WENDY PRINS, Senior Advisor, Quality Innovation, National Quality Forum

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, The New York Academy of Medicine

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, Outpatient Palliative Oncology Lead, Division of Palliative Medicine, University of Kansas Health System, 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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

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 (as of April 2017)

THELMA COX, Administrative Assistant (until April 2017)

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

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

PATRICK BURKE, Financial Associate

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

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:

SCOTT HALPERN, Perelmen School of Medicine, University of Pennsylvania

DEBORAH LAFOND, Children’s National Health System

DANA LUSTBADER, ProHEALTH

STEVEN PANTILAT, University of California, San Francisco, School of Medicine

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 MARK LAZENBY, Yale University School of Nursing. He was responsible for making certain that an indepen-

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

dent 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. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

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 Diane Meier and Brenda Nevidjon for their 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 workshop complete with informative presentations and rich 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 for People with Serious Illness 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, Centers for Medicare & Medicaid Services, 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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

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.

Page xviii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×

Acronyms and Abbreviations

ACO accountable care organization
BMI body mass index
BPC Bipartisan Policy Center
CAPC Center to Advance Palliative Care
CbPC community-based palliative care
CCA Commonwealth Care Alliance
CHF congestive heart failure
CHRONIC Creating High-Quality Results and Outcomes Necessary to Improve Chronic Care Act
CMS Centers for Medicare & Medicaid Services
COPD chronic obstructive pulmonary disease
CY calendar year
D-SNP Dual-Eligible Special Needs Plan
ED emergency department
EHR electronic health record
HEDIS Healthcare Effectiveness Data and Information Set
HIPAA Health Insurance Portability and Accountability Act
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
×
IAH Independence at Home
LMH Landmark Health
MA Medicare Advantage
MedPAC The Medicare Payment Advisory Commission
NHPCO National Hospice and Palliative Care Organization
NICU neonatal intensive care unit
PACE Program of All-Inclusive Care for the Elderly
PCORI Patient-Centered Outcomes Research Institute
PCP primary care provider
PHQ-9 Patient Health Questionnaire-9
POLST physician orders for life-sustaining treatment
SNF skilled nursing facility
VATS video-assisted thoracoscopic surgery
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24908.
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Palliative care is the interdisciplinary specialty focused on improving quality of life for people with serious illness and their families. This interdisciplinary care is provided by doctors, nurses, social workers, chaplains and others who work together with the patient’s other doctors to provide an extra layer of support. Such care is appropriate for people at any age and at any stage in a serious illness, and can be provided together with curative treatment to address clinical, emotional, psychosocial and spiritual concerns of the patient and their family. To better understand how the principles of palliative care can be integrated into the overall provision of care and services to those facing serious illness, the Roundtable on Quality Care for People with Serious Illness held a public workshop in April 2017. This publication summarizes the presentations and discussions from the workshop.

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