DESCRIBING DEATH IN AMERICA

What We Need to Know

June R. Lunney, Kathleen M. Foley, Thomas J. Smith, and Hellen Gelband, Editors

National Cancer Policy Board and

Division of Earth and Life Studies

INSTITUTE OF MEDICINE

NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C. www.nap.edu



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DESCRIBING DEATH IN AMERICA What We Need to Know June R. Lunney, Kathleen M. Foley, Thomas J. Smith, and Hellen Gelband, Editors National Cancer Policy Board and Division of Earth and Life Studies INSTITUTE OF MEDICINE NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W.Washington, DC20001 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 committee responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for this project was provided by the National Cancer Institute, the Centers for Disease and Prevention, and the American Cancer Society. The views presented in this report are those of the National Cancer Policy Board and are not necessarily those of the funding agencies. Library of Congress Cataloging-in-Publication Data Describing death in America : what we need to know / Kathleen M. Foley … [et al.], editors ; National Cancer Policy Board, Institute of Medicine, and Division on Earth and Life Studies, National Research Council. p. ; cm. Includes bibliographical references. ISBN 0-309-08725-2 (pbk.) 1. Terminal care—United States. 2. Cancer—Palliative treatment—United States. [DNLM: 1. Terminal Care—United States. 2. Data Collection—United States. 3. Mortality—United States. 4. Quality Assurance, Health Care—United States. 5. Quality of Life—United States. 6. Terminally Ill—psychology—United States. WB 310 D449 2003] I. Foley, Kathleen M., 1944- II. National Cancer Policy Board (U.S.) III. National Research Council (U.S.). Division on Earth and Life Studies. R726.8.D475 2003 616.99′4029—dc21 2003000881 Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC20055; call (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 2003 by the National Academy of Sciences. All rights reserved.

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THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine 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. 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. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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NATIONAL CANCER POLICY BOARD Joseph Simone, M.D., Chair, Simone Consulting, Dunwoody, GA Ellen Stovall, Vice-Chair, National Coalition for Cancer Survivorship, Silver Spring, MD Diana Petitti, M.D., Vice-Chair, Kaiser Permanente of Southern California, Pasadena, CA Bruce W. Stillman, Ph.D., Vice-Chair, Cold Spring Harbor Laboratory, Cold Spring Harbor Jill Bargonetti, Ph.D., Hunter College, New York, NY Tim Byers, M.D., M.P.H., University of Colorado School of Medicine, Denver, CO Timothy Eberlein, M.D., Washington University School of Medicine, St. Louis, MO Karen Hersey, J.D., Massachusetts Institute of Technology, Cambridge, MA Jimmie C. Holland, M.D., Memorial Sloan-Kettering Cancer Center, New York, NY William Kaelin, M.D., Harvard Medical School, Boston, MA Daniel J. Kevles, Ph.D., Yale University, New Haven, CT David M. Livingston, M.D., Harvard Medical School, Boston, MA William W. McGuire, M.D., UnitedHealth Group, Minnetonka, MN John Mendelsohn, M.D., M.D. Anderson Cancer Center, Houston, TX Kathleen Hardin Mooney, Ph.D., University of Utah College of Nursing, Salt Lake City, UT Nancy Mueller, Sc.D., Harvard School of Public Health, Boston, MA Patricia Nolan, M.D., Rhode Island Department of Health, Providence, RI Cecil B. Pickett, Ph.D., Schering Plough Institute, Kenilworth, NJ Louise Russell, Ph.D., Rutgers University, New Brunswick, NJ Thomas J. Smith, M.D., F.A.C.P., Medical College of Virginia at Virginia Commonwealth University, Richmond, VA Susan Weiner, Ph.D., The Children’s Cause, Silver Spring, MD Robert C. Young, M.D., American Cancer Society and the Fox Chase Cancer Center, Philadelphia, PA BACKGROUND PAPER AUTHOR June R. Lunney, Ph.D., Bethesda, MD STAFF Hellen Gelband, Study Director Rogert C. Herdman, Director, NCPB Nicci Dowd, Administrative Assistant Kerry B. Kemp, Writer/Editor

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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 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: Nicholas Christakis, Harvard University Betty Ferrell, City of Hope National Medical Center Joanne M. Hilden, The Cleveland Clinic Vincent Mor, Providence, Rhode Island James A. Tulsky, VA Medical Center, Durham, North Carolina Beth Virnig, University of Minnesota 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 release. The review of this report was overseen by Samuel H. Preston, University of Pennsylvania and George E. Thibault, Partners HealthCare System, Inc. Appointed by the National Research Council

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and Institute of Medicine, they were 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 authoring committee and the institution.

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Acronyms and Abbreviations AHEAD Asset and Health Dynamics Among the Oldest Old Study CMS Centers for Medicare and Medicaid Services DHHS Department of Health and Human Services DMIS Defense Medical Information System FERRET Federal Electronic Research and Review Extraction Tool GAO General Accounting Office HC Household Component HEDIS Health Plan Employer Data and Information Set HRS Health and Retirement Study IC Insurance Component IOM Institute of Medicine JCAHO Joint Commission on the Accreditation of Healthcare Organizations LSOA Longitudinal Study of Aging MCBS Medicare Current Beneficiary Survey MDS Nursing Home Minimum Data Set MedPAC Medicare Payment Advisory Commission MPC Medical Provider Component NCQA National Committee for Quality Assurance NHC Nursing Home Component NIH National Institutes of Health NIS Nationwide Inpatient Sample NLTCS National Long-Term Care Surveys

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NMES National Medical Care Expenditure Survey NMFS National Mortality Followback Survey OASIS Outcome and Assessment Information Set PSID Panel Study of Income Dynamics PTF Patient Treatment File RAI Resident Assessment Instrument SASD State Ambulatory Surgery Databases SEER Surveillance, Epidemiology, and End Results Program SID State Inpatient Databases SOA Supplement on Aging SOAII Second Supplement on Aging

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Contents     Executive Summary   1 1   Introduction and Overview   16     Background on End-of-Life Issues,   17     Numbers and Causes of Death in the United States,   18     Overview of the Current Report,   20 2   Key Data Elements Pertaining to the End of Life   21     Definition of “The End of Life”,   22     Categories of Data Relevant to the Quality of Life and Care of People at the End of Life,   22 3   Currently Available Datasets   28     Datasets Traditionally Used to Describe Dying,   29     Census Bureau Surveys,   37     National Health Surveys,   38     Surveys Focused on the Elderly,   41     Disease Registries and Surveillance Studies,   43     Reimbursement-Specific Administrative Databases,   44     Other Data Collected by and About Health Care Organizations,   45     Tools for Accessing Data,   49

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    Information Most Readily Available from Existing Data Sources,   49     Limitations of Existing Data Sources in Answering Key Questions,   50 4   Methodological Issues in the Collection and Use of Data About Dying   53     Methodological Issues Identified by End-of-Life Researchers,   53     Methodological Issues Related to the Use of Existing Datasets,   55     Methodological Issues Related to Survey Methods,   56     Analytic Issues in Using Data from Identified Decedents,   58     Issues Related to Privacy, Confidentiality, and Linking Datasets,   59 5   Conclusions and Recommendations   63     References   68     Appendixes     A   Administrative Information for Relevant Datasets   73 B   Information on Selected Variables   96 C   Workshop Agenda and Participants   107

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DESCRIBING DEATH IN AMERICA

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