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
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: 978-0-309-46611-0
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.
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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.
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
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.
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)
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
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
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-
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.
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
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
FRAMING THE CHALLENGES AND OPPORTUNITIES TO PROVIDE HIGH-QUALITY CARE TO PEOPLE WITH SERIOUS ILLNESS
The Garrett Family’s Experience with Palliative Care
Community-Based Palliative Care: Population Health Management Perspective
Community-Based Palliative Care: Health System Perspective
PALLIATIVE CARE PRINCIPLES ACROSS THE AGE SPECTRUM
Adult Palliative Care in a Value-Based Payment Model
PROMISING INNOVATIONS IN PROVIDING HIGH-QUALITY, COMPREHENSIVE PALLIATIVE CARE
Home-Based Primary Care Through Independence at Home
Reaching Patients in Rural Underserved Areas: ResolutionCare
Serving the Dual-Eligible Population: Commonwealth Care Alliance
Transforming Care Delivery: Landmark Health’s Complexivist Model
PROVIDING HIGH-QUALITY COMPREHENSIVE CARE
CareMore’s Model of Comprehensive Care
Tandem365’s Model for Comprehensive Care Delivery
POTENTIONAL POLICY STEPS TO SUPPORT HIGH-QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS
Person-Centered Care for High-Need, High-Cost Medicare Patients
Boxes, Figures, and Tables
BOXES
2 Patient Stories from the Provider’s Perspective
3 Suggestions for Working in the Current Disruptive Environment
4 Highlighting the Need for Home-Based Palliative Care Programs
FIGURES
1 Conceptual shift for palliative care
2 Percentage of Medicare decedents receiving hospice care—CY2014
3 Geographic variation in hospital palliative care
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 |
| 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 |
