Improving Palliative Care for Cancer

Kathleen M.Foley and Hellen Gelband, Editors

National Cancer Policy Board

INSTITUTE OF MEDICINE and

NATIONAL RESEARCH COUNCIL

NATIONAL ACADEMY PRESS
Washington, D.C.



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Improving Palliative Care for Cancer Improving Palliative Care for Cancer Kathleen M.Foley and Hellen Gelband, Editors National Cancer Policy Board INSTITUTE OF MEDICINE and NATIONAL RESEARCH COUNCIL NATIONAL ACADEMY PRESS Washington, D.C.

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Improving Palliative Care for Cancer NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, DC 20418 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. The members of the Board responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for the National Cancer Policy Board is provided by the National Cancer Institute; the Centers for Disease Control and Prevention; Abbott Laboratories; the American Cancer Society; American Society of Clinical Oncology; Amgen, Inc.; Aventis; and United Health Care Foundation. The views presented in this report are those of the Institute of Medicine and the Division of Earth and Life Studies National Cancer Policy Board and are not necessarily those of the funding agencies. International Standard Book Number 0-309-07402-9 Library of Congress Control Number: 2001094187 Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 20055. Call (800) 624–6242 or (202) 334–3313 (in the Washington metropolitan area), or visit the NAP home page at www.nap.edu. The full text of this report is available at www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2001 by the National Academy of Sciences. All rights reserved. Printed in the United States of America.

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Improving Palliative Care for Cancer THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council 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 mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M.Alberts 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. Wm.A.Wulf 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. Kenneth I.Shine 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. Bruce M.Alberts and Dr. Wm.A.Wulf are chairman and vice chairman, respectively, of the National Research Council.

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Improving Palliative Care for Cancer NATIONAL CANCER POLICY BOARD Arnold J.Levine (Chair), President, The Rockefeller University, New York Joseph Simone (Vice Chair), Medical Director, Huntsman Cancer Foundation and Institute, University of Utah, Salt Lake City Ellen Stovall (Vice Chair), Executive Director, National Coalition for Cancer Survivorship, Silver Spring, MD Diana Petitti (Vice Chair), Director, Research and Evaluation, Kaiser Permanente of Southern California, Pasadena Tim Byers, Professor of Epidemiology and Program Leader, Clinical Cancer Prevention and Control, University of Colorado Health Sciences Center, Denver Vivien W.Chen, Epidemiology Section Chief and Professor, Louisiana State University Medical Center, New Orleans Susan Curry, Professor of Health Policy and Administration and Director, Health Research and Policy Centers, University of Illinois at Chicago Norman Daniels, Professor of Philosophy, Tufts University, Boston (member through April 2001) Kathleen Foley, Director, Project on Death in America, The Open Society and Memorial Sloan-Kettering Cancer Center, New York (member through April 2001) Thomas Kelly, Professor and Chairman, Department of Molecular Biology and Genetics, The Johns Hopkins University School of Medicine, Baltimore (member through April 2001) Mark McClellan, Assistant Professor of Economics, Stanford University (member through March 2001) William McGuire, Chief Executive Officer, UnitedHealth Group, Minnetonka, MN John Mendelsohn, President, University of Texas M.D. Anderson Cancer Center, Houston Monica Morrow, Professor of Surgery and Director, Lynn Sage Comprehensive Breast Program, Northwestern University Medical School, Chicago Nancy Mueller, Professor of Epidemiology, Harvard University School of Public Health, Boston Pilar Ossorio, Assistant Professor of Law and Medical Ethics, and Associate Director for Programming, Center for the Study of Race and Ethnicity in Medicine, University of Wisconsin Law School, Madison Cecil B.Pickett, Executive Vice President for Discovery Research, Schering-Plough Research Institute, Kenilworth, NJ John Seffrin, Chief Executive Officer, American Cancer Society, Atlanta

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Improving Palliative Care for Cancer Sandra Millon Underwood, ACS Oncology Nursing Professor, University of Wisconsin School of Nursing, Milwaukee Frances Visco, President, National Breast Cancer Coalition, Washington, DC (member through April 2001) Susan Weiner, President, The Children’s Cause, Silver Spring, MD Study Staff Hellen Gelband, Study Director Florence Poillon, Editor NCPB Staff Robert Cook-Deegan, Director, National Cancer Policy Board (through August 2000) Roger Herdman, Director, National Cancer Policy Board (from September 2000) Ellen Johnson, Administrator (through July 2000) Nicci T.Dowd, Administrator (from August 2000) Jennifer Cangco, Financial Associate

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Improving Palliative Care for Cancer 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 NRC’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: Susan Dale Block, Dana Farber Cancer Institute Eduardo Bruera, MD Anderson Cancer Center LaVera M.Crawley, Stanford University Center for Biomedical Ethics Betty R.Ferrell, City of Hope National Medical Center Priscilla Kissick, Philadelphia, Pennsylvania Joseph S.Pagano, University of North Carolina at Chapel Hill Thomas Smith, Medical College of Virginia T.Declan Walsh, The Cleveland Clinic Foundation George Wetherill, Carnegie Institution of Washington Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its

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Improving Palliative Care for Cancer release. The review of this report was overseen by Harold Sox of the Dartmouth-Hitchcock Medical Center, appointed by the NRC’s Report Review Committee, who was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the National Cancer Policy Board, the Institute of Medicine, and the National Research Council.

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Improving Palliative Care for Cancer Preface It is innately human to comfort and provide care to those suffering from cancer, particularly those close to death. Yet what seems self-evident at an individual, personal level has, by and large, not guided policy at the level of institutions in this country. There is no argument that palliative care should be integrated into cancer care from diagnosis to death. But significant barriers—attitudinal, behavioral, economic, educational, and legal— still limit access to care for a large proportion of those dying from cancer, and in spite of tremendous scientific opportunities for medical progress against all the major symptoms associated with cancer and cancer death, public research institutions have not responded. In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease, and their families. This report builds on and takes forward an agenda set out by the 1997 IOM report Approaching Death: Improving Care at the End of Life, which came at a time when leaders in palliative care and related fields had already begun to air issues surrounding care of the dying. That report identified significant gaps in knowledge about care at the end of life and the need for serious attention from biomedical, social science, and health services researchers. Most importantly, it recognized that the impediments to good care could be identified and potentially remedied. The report itself catalyzed further public involvement in specific initiatives—mostly pilot and demonstration projects and programs funded by the nonprofit foundation community, which are now coming to fruition.

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Improving Palliative Care for Cancer There are no villains in this piece but ourselves and our culture. Public institutions and policymakers reflect dominant societal values that still deny dying and death. Although it does occur, change to improve care of the suffering and dying is slow and conflicted with the tension between cure and care. This report encourages continued innovation and collaboration of foundations and others, but focuses on ways in which the government can embrace opportunities to improve existing palliative care, make access to it equitable for all, and help realize better palliative interventions by making research funds more available. It is a truism that death—not just our own—affects all of us, even if it is a topic most people do not want to contemplate for long. Death is inevitable, but severe suffering is not. Willpower and determination will be required, but it is time to move our public institutions toward policies that emphasize the importance of improving palliative care for those who want and need it. This report identifies the special needs of cancer patients and the importance of the clinical and research establishment involved in cancer care to take a leadership role in modeling the best quality care from diagnosis to death for all Americans. Kathleen M.Foley, M.D. Director, Project on Death in America, The Open Society

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Improving Palliative Care for Cancer Acronyms and Abbreviations AAMC American Association of Medical Colleges ACoS American College of Surgeons ACS American Cancer Society ADL activities of daily living AHRQ Agency for Healthcare Research and Quality AMA American Medical Association APA American Psychiatric Association APS American Pain Society ASCO American Society of Clinical Oncology ASPHO American Society of Pediatric Hematology/Oncology BFI Brief Fatigue Inventory CAHPS Consumer Assessment of Health Plans Survey CIS Cancer Information Service CME continuing medical education CNS central nervous system COPD Chronic Obstructive Pulmonary Disease CPR Cardiopulmonary resuscitation CPT Current Procedural Terminology DCTD Division of Cancer Treatment and Diagnosis DNR do not resuscitate

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Improving Palliative Care for Cancer DSM-IV Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition ECOG Eastern Cooperative Oncology Group HCFA Health Care Financing Administration HPCN Harlem Palliative Care Network HELP Hospitalized Elderly Longitudinal Project HRSA Health Resources and Services Administration ICD-9 International Classification of Diseases, 9th revision ICU intensive care unit IL-6 interleukin-6 INF-a alpha-interferon IOM Institute of Medicine IV intravenous JCAHO Joint Commission on Accreditation of Healthcare Organizations LCME Liaison Committee on Medical Education MDS Minimum Data Set MedPAC Medicare Payment Advisory Commission MRI magnetic resonance imaging MSKCC Memorial Sloan-Ketterin Cancer Center NCCN National Comprehensive Cancer Network NCHS National Center for Health Statistics NCI National Cancer Institute NCPB National Cancer Policy Board NGH North General Hospital NHO National Hospice Organization NHPCO National Hospice and Palliative Care Organization NIA National Institute on Aging NIAID National Institute of Allergy and Infectious Diseases NIH National Institutes of Health NINR National Institute of Nursing Research NMFBS National Mortality Followback Survey OCD obsessive-compulsive disorder PCP President’s Cancer Panel

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Improving Palliative Care for Cancer PDIA Project on Death in America PDQ Physician Data Query PSDA Patient Self-Determination Act PTSD post-traumatic stress disorder PVS persistent vegetative state QI quality indicator RFP request for proposals RWJF Robert Wood Johnson Foundation SEER Surveillance, Epidemiology, and End Results Program SIOP International Society of Paediatric Oncology SSRI selective serotonin reuptake inhibitor SUPPORT Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment THC tetrahydrocannabinol VA Department of Veterans Affairs VNSNY Visiting Nurse Service of New York WHO World Health Organization

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Improving Palliative Care for Cancer Contents PART 1         EXECUTIVE SUMMARY   3 1   BACKGROUND AND RECOMMENDATIONS   9     Introduction,   9     What Is Palliative Care?,   11     Intent of This Report,   12     Barriers to Excellent Palliative and End-of-Life Care,   13     End-of-Life and Palliative Care: Evolution of the Issue,   33     The 1990s: Signal Efforts and Events Around Palliative and End-of-Life Care,   37     Current NIH Involvement in Palliative and End-of-Life Care,   45     Conclusions and Recommendations,   49     References,   53     Appendix 1A         Table 1A-1: NCI Funding for Palliative Care Research: Specific Projects, Fiscal Year 1999,   55     Table 1A-2: NCI Funding for Palliative Care Research: Institutional Grants, Fiscal Year 1999,   58

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Improving Palliative Care for Cancer     Appendix 1BRecommendations from Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000),   62 TABLES AND BOXES Tables 1-1   Clinical Practice Guidelines for End-of-Life Care: Status, Source, and Further Development Needed,   21 1-2   Status of Quality Indicator Development for End-of-Life Care,   25 1-3   Symptom Control Research Opportunities and Unmet Needs,   34 Boxes 1-1   Promoting Excellence in End-of-Life Care—The Robert Wood Johnson Foundation,   17 1-2   SUPPORT,   38 1-3   Recommendations and Future Directions—From Approaching Death: Improving Care at the End of Life (IOM, 1997),   41 1-4   The ASCO Survey,   46 PART 2     2   RELIABLE, HIGH-QUALITY, EFFICIENT END-OF-LIFE CARE FOR CANCER PATIENTS: ECONOMIC ISSUES AND BARRIERS Joanne Lynn, M.D., and Ann O’Mara, R.N., Ph.D.   67 3   QUALITY OF CARE AND QUALITY INDICATORS FOR END-OF-LIFE CANCER CARE: HOPE FOR THE BEST, YET PREPARE FOR THE WORST Joan M Teno, M.D., M.S.   96 4   THE CURRENT STATE OF PATIENT AND FAMILY INFORMATION ABOUT END-OF-LIFE CARE Aaron S.Kesselheim   132 5   PALLIATIVE CARE FOR AFRICAN AMERICANS AND OTHER VULNERABLE POPULATIONS: ACCESS AND QUALITY ISSUES Richard Payne, M.D.   153

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Improving Palliative Care for Cancer 6   END-OF-LIFE CARE: SPECIAL ISSUES IN PEDIATRIC ONCOLOGY Joanne M.Hilden, M.D., Bruce P.Himelstein, M.D., David R. Freyer, D.O., Sarah Friebert, M.D., and Javier R.Kane, M.D.   161 7   CLINICAL PRACTICE GUIDELINES FOR THE MANAGEMENT OF PSYCHOSOCIAL AND PHYSICAL SYMPTOMS OF CANCER Jimmie C.Holland, M.D., and Lisa Chertkov, M.D.   199 8   CROSS-CUTTING RESEARCH ISSUES: A RESEARCH AGENDA FOR REDUCING DISTRESS OF PATIENTS WITH CANCER Charles S.Cleeland, Ph.D.   233 9   PROFESSIONAL EDUCATION IN PALLIATIVE AND END-OF-LIFE CARE FOR PHYSICIANS, NURSES AND SOCIAL WORKERS Hellen Gelband   277 INDEX   311

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