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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
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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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

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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.

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
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This page in the original is blank.
Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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.

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Page xiii Cite
Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
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DESCRIBING DEATH IN AMERICA

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
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National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists “describing death” at a national level – though some of it is very informative – is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come.

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