Patient-Centered Cancer Treatment Planning

Improving the Quality of Oncology Care

WORKSHOP SUMMARY

A National Coalition for Cancer Survivorship and
Institute of Medicine Workshop

Margie Patlak, Erin Balogh, and Sharyl J. Nass, Rapporteurs

National Cancer Policy Forum

Board on Health Care Services

INSTITUTE OF MEDICINE
             OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

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Patient-Centered Cancer Treatment Planning Improving the Quality of Oncology Care WORKSHOP SUMMARY A National Coalition for Cancer Survivorship and Institute of Medicine Workshop Margie Patlak, Erin Balogh, and Sharyl J. Nass, Rapporteurs National Cancer Policy Forum Board on Health Care Services

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. This project was supported by the National Coalition for Cancer Survivorship. The National Cancer Policy Forum is supported by Contract Nos. HHSN261200900003C and 200-2005-13434 TO #1 between the National Academy of Sciences and the National Cancer Institute and the Centers for Disease Control and Prevention, respec- tively. In addition, the National Cancer Policy Forum is also supported by the American Association for Cancer Research, the American Cancer Society, the American Society of Clinical Oncology, the Association of American Cancer Institutes, Bristol-Myers Squibb, C-Change, the CEO Roundtable on Cancer, Novartis Oncology, and the Oncology Nursing Society. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-21273-1 International Standard Book Number-10: 0-309-21273-1 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2011 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2011. Patient-Centered Cancer Treat- ment Planning: Improving the Quality of Oncology Care: Workshop Summary. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a man- date that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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WORKSHOP PLANNING COMMITTEE1 BETTY R. FERRELL (Co-chair), Research Scientist, City of Hope National Medical Center, Duarte, California ELLEN STOVALL (Co-chair), Senior Health Policy Advisor, National Coalition for Cancer Survivorship, Silver Spring, Maryland ANTHONY L. BACK, Professor of Medicine, University of Washington, and Director, Program in Cancer Communication, Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center, Seattle, Washington WILLIAM DALTON, President, Chief Executive Officer (CEO), and Center Director, Moffitt Cancer Center, Tampa, Florida, and Chair, AACR Committee on Science Policy and Legislative Affairs PATRICIA A. GANZ, Professor, University of California at Los Angeles (UCLA) Schools of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center, Los Angeles, California ELIZABETH GOSS, Partner, Turner & Goss LLP, Washington, DC JENNIFER HAUSMAN, Clinical Research Manager, Public Health Policy, WellPoint, Inc., Woodland Hills, California ANDREA KABCENELL, Vice President, Institute for Healthcare Improvement, Ithaca, New York SHARON B. MURPHY, Scholar in Residence, Institute of Medicine, Washington, D.C. ALISON P. SMITH, Vice President, Strategic Initiatives, C-Change, Washington, D.C. THOMAS J. SMITH, Professor of Medicine and Palliative Care Research, Virginia Commonwealth University Massey Cancer Center, Richmond, Virginia Project Staff ERIN BALOGH, Study Director MICHAEL PARK, Senior Program Assistant SHARYL J. NASS, Director, National Cancer Policy Forum ROGER HERDMAN, Director, Board on Health Care Services 1 The Institute of Medicine planning committee was solely responsible for organizing the meeting, identifying topics, and choosing speakers. The responsibility for the published summary rests with the rapporteurs and the institution. v

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NATIONAL CANCER POLICY FORUM1 JOHN MENDELSOHN (Chair), President, M.D. Anderson Cancer Center, Houston, Texas PATRICIA A. GANZ (Vice chair), Professor, University of California at Los Angeles (UCLA) School of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center, Los Angeles, California AMY ABERNETHY, Associate Professor of Medicine, Duke University School of Medicine, and Director, Duke Cancer Care Research Program, Durham, North Carolina FRED APPELBAUM, Director, Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, Washington PETER B. BACH, Associate Attending Physician, Memorial Sloan-Kettering Cancer Center, New York EDWARD BENZ, JR., President, Dana-Farber Cancer Institute and Director, Harvard Cancer Center, Harvard School of Medicine, Boston, Massachusetts MONICA BERTAGNOLLI, Professor of Surgery, Harvard University Medical School, Boston, Massachusetts THOMAS G. BURISH, Provost, Notre Dame University, South Bend, Indiana, and Past Chair, American Cancer Society Board of Directors MICHAEL A. CALIGIURI, Director, Ohio State Comprehensive Cancer Center, Columbus, Ohio, and President, Association of American Cancer Institutes RENZO CANETTA, Vice President, Oncology Global Clinical Research, Bristol-Myers Squibb, Wallingford, Connecticut MICHAELE CHAMBLEE CHRISTIAN, Retired, Division of Cancer Treatment and Diagnosis, National Cancer Institute, Washington, DC WILLIAM DALTON, President, CEO, and Center Director, Moffitt Cancer Center, Tampa, Florida, and Chair, AACR Committee on Science Policy and Legislative Affairs WENDY DEMARK-WAHNEFRIED, Associate Director for Cancer Prevention and Control, University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, Alabama ROBERT ERWIN, President, Marti Nelson Cancer Foundation, Davis, California 1 Institute of Medicine forums and roundtables do not issue, review, or approve indi- vidual documents. The responsibility for the published meeting summary rests with the rapporteurs and the institution. vi

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ROY S. HERBST, Chief of Medical Oncology, Yale Cancer Center, New Haven, Connecticut JOHN HOHNEKER, Senior Vice President and Head, Global Development, Integrated Hospital Care, Novartis Pharma AG, Basel Switzerland THOMAS J. KEAN, Executive Director, C-Change, Washington, DC DOUGLAS R. LOWY, Deputy Director, National Cancer Institute, Bethesda, Maryland DANIEL R. MASYS, Professor and Chair, Department of Biomedical Informatics, Vanderbilt University School of Medicine, Memphis, Tennessee MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer, Durham, North Carolina BRENDA NEVIDJON, Clinical Professor and Specialty Director, Nursing & Healthcare Leadership, Duke University School of Nursing, Durham, North Carolina, and Past President, Oncology Nursing Society STEVEN PIANTADOSI, Director, Samuel Oschin Comprehensive Cancer Institute, Cedars-Sinai Medical Center, Los Angeles, California LISA C. RICHARDSON, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, Georgia YA-CHEN TINA SHIH, Director, Program in the Economics of Cancer, University of Chicago, Chicago, Illinois ELLEN SIGAL, Chairperson and Founder, Friends of Cancer Research, Washington, DC JOHN A. WAGNER, Vice President, Clinical Pharmacology, Merck and Company, Inc., Rahway, New Jersey RALPH R. WEICHSELBAUM, Chair, Radiation and Cellular Oncology, and Director, Ludwig Center for Metastasis Research, The University of Chicago Medical Center, Chicago, Illinois JANET WOODCOCK, Director, Center for Drug Evaluation and Research, Food and Drug Administration, Rockville, Maryland National Cancer Policy Forum Staff SHARYL J. NASS, Director, National Cancer Policy Forum LAURA LEVIT, Program Officer CHRISTINE MICHEEL, Program Officer ERIN BALOGH, Associate Program Officer MICHAEL PARK, Senior Program Assistant PATRICK BURKE, Financial Associate SHARON B. MURPHY, Scholar in Residence ROGER HERDMAN, Director, Board on Health Care Services vii

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Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Nancy Jo Bush, Oncology Clinical Nurse Specialist, Oncology Nurse Practitioner, Lecturer, and Assistant Clinical Professor, UCLA School of Nursing, Los Angeles, California Robert L. Erwin, President, Marti Nelson Cancer Foundation, Davis, California Sherrie Kaplan, Assistant Vice Chancellor of Healthcare, Professor of Medicine, and Executive Co-Director, Health Policy Research, University of California at Irvine Lawrence N. Shulman, Chief Medical Officer, Senior Vice President for Medical Affairs, and Chief, Division of General Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts ix

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x REVIEWERS Although the reviewers listed above have provided many construc- tive comments and suggestions, they did not see the final draft of the report before its release. The review of this report was overseen by Ruth McCorkle, Florence Schorske Wald Professor of Nursing and Co-Director of Dissemination Core, Center for Self and Family Management of Vul- nerable Populations, Yale School of Nursing. Appointed by the Institute of Medicine, she was responsible for making certain that an independent examination of this report was carried out in accordance with institu- tional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Contents INTRODUCTION AND OVERVIEW, 1 WHY PATIENT-CENTERED PLANNING FOR CANCER?, 3 PATIENT-CENTERED CANCER CARE, 5 Patient Education, 6 Patient Empowerment, 7 Communication, 8 Communication with Patients with Advanced Cancer, 11 Coordination, 15 Addressing Mental Health Issues, 16 Patient-Centered Cancer Treatment Plan, 17 PATIENT-CENTERED CANCER TREATMENT PLANNING IN PRACTICE: ARE WE THERE YET?, 21 Patient Education, 22 Shared Decision Making, 23 CHALLENGES TO PATIENT-CENTERED CARE, 24 Patient Stress, 25 Lack of Health Literacy and Numeracy, 26 Differing Opinions, 27 Systemic Challenges, 28 TOOLS, PERSONNEL, AND PROGRAMS TO OVERCOME BARRIERS, 29 Tools and Resources, 29 xi

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xii CONTENTS Training, 34 Personnel, 35 Patient Navigators, 35 Oncology Nurses and Social Workers, 40 Model Programs, 41 Patient Coaching, 41 Decision Support, 41 Accountable Care, 42 Direct-to-Consumer Services, 44 Registries, 45 Survivorship Planning as a Model for Treatment Planning, 46 POLICY OPTIONS TO PROMOTE PATIENT-CENTERED CANCER TREATMENT PLANNING, 48 Standards for Training, Licensure, and Practice, 48 Financial Incentives, 49 Research, 50 Healthcare Reform, 51 FINAL REMARKS, 53 REFERENCES, 53 APPENDIX, 59 BOXES AND FIGURES Box 1: Advanced Care Planning, 12 Box 2: Role of the Primary Care Physician in Cancer Treatment Planning, 18 Box 3: Electronic Medical Records, 32 Figure 1: Model of psychosocial care, 20 Figure 2: The roles of patient navigators, 37 Figure 3: The model of quality cancer care developed by Dr. Ed Wagner, 52