ORGAN DONATION

OPPORTUNITIES FOR ACTION

Committee on Increasing Rates of Organ Donation

Board on Health Sciences Policy

James F. Childress and Catharyn T. Liverman, Editors

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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Organ Donation: Opportunities for Action ORGAN DONATION OPPORTUNITIES FOR ACTION Committee on Increasing Rates of Organ Donation Board on Health Sciences Policy James F. Childress and Catharyn T. Liverman, Editors THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Organ Donation: Opportunities for Action 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. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Award No. HHSH23457010 between the National Academy of Sciences and the U.S. Department of Health and Human Services and by a grant from The Greenwall Foundation. Any opinions, findings, or conclusions 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. Library of Congress Cataloging-in-Publication Data Institute of Medicine (U.S.). Committee on Increasing Rates of Organ Donation. Organ donation : opportunities for action / Committee on Increasing Rates of Organ Donation, Board on Health Sciences Policy ; James F. Childress and Catharyn T. Liverman, editors. p. ; cm. Includes bibliographical references. This study was supported by Award no. HHSH23457010 between the National Academy of Sciences and the U.S. Department of Health and Human Services ISBN 0-309-10114-X (pbk.) 1. Donation of organs, tissues, etc. 2. Transplantation of organs, tissues, etc. I. Childress, James F. II. Liverman, Catharyn T. III. Title. [DNLM: 1. Tissue and Organ Procurement—organization & administration—United States. 2. Health Policy—United States. 3. Tissue Donors—supply & distribution—United States. 4. Transplants—supply & distribution—United States. WO 660 I568o 2006] RD129.5.O74 2006 362.19’795—dc22 2006017677 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 2006 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.

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Organ Donation: Opportunities for Action “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Advising the Nation. Improving Health.

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Organ Donation: Opportunities for Action 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. 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. 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. Ralph J. Cicerone and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Organ Donation: Opportunities for Action COMMITTEE ON INCREASING RATES OF ORGAN DONATION JAMES F. CHILDRESS (Chair), University of Virginia, Charlottesville MARY ANN BAILY, The Hastings Center, Garrison, New York RICHARD J. BONNIE, University of Virginia, Charlottesville CLIVE O. CALLENDER, Howard University, Washington, D.C. RAUL DE VELASCO, University of Miami, Florida JAMES M. DUBOIS, St. Louis University, Missouri LEWIS R. GOLDFRANK, New York University, New York SANDRA D. HICKEY, Georgetown Community Hospital, Georgetown, Kentucky DAVID H. HOWARD, Emory University, Atlanta, Georgia DANNY O. JACOBS, Duke University Medical Center, Durham, North Carolina CYNDA HYLTON RUSHTON, Johns Hopkins University and Children’s Center, Baltimore, Maryland DAVID SCHKADE, University of California, San Diego DEBRA A. SCHWINN, Duke University Medical Center, Durham, North Carolina KEITH WAILOO, Rutgers University, New Brunswick, New Jersey Liaison, Board on Health Sciences Policy NANCY N. DUBLER, The Albert Einstein College of Medicine, Bronx, New York IOM Staff CATHARYN T. LIVERMAN, Project Director EMILY ANN MEYER, Project Officer NORA HENNESSY, Research Associate (from September 2005) JUDY ESTEP, Senior Project Assistant KAREN BOYD, Research Associate (May–August 2005) ANDREA SCHULTZ, Senior Project Assistant (April–July 2005)

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Organ Donation: Opportunities for Action BOARD ON HEALTH SCIENCES POLICY* FRED H. GAGE (Chair), The Salk Institute for Biological Studies, La Jolla, California GAIL H. CASSELL, Eli Lilly and Company, Indianapolis, Indiana JAMES F. CHILDRESS, University of Virginia, Charlottesville ELLEN WRIGHT CLAYTON, Vanderbilt University Medical School, Nashville, Tennessee DAVID R. COX, Perlegen Sciences, Mountain View, California LYNN R. GOLDMAN, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland BERNARD D. GOLDSTEIN, University of Pittsburgh, Pittsburgh, Pennsylvania MARTHA N. HILL, Johns Hopkins University School of Nursing, Baltimore, Maryland ALAN LESHNER, American Association for the Advancement of Science, Washington, D.C. DANIEL MASYS, Vanderbilt University Medical Center, Nashville, Tennessee JONATHAN D. MORENO, University of Virginia, Charlottesville E. ALBERT REECE, University of Arkansas, Little Rock MYRL WEINBERG, National Health Council, Washington, D.C. MICHAEL J. WELCH, Washington University School of Medicine, St. Louis, Missouri OWEN N. WITTE, University of California, Los Angeles MARY WOOLLEY, Research!America, Alexandria, Virginia IOM Staff ANDREW M. POPE, Director AMY HAAS, Board Assistant DAVID CODREA, Financial Associate * IOM Boards do not review or approve individual reports and are not asked to endorse conclusions and recommendations. The responsibility for the content of the report rests with the authoring committee and the institution.

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Organ Donation: Opportunities for Action Independent Report 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 (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: Nancy L. Ascher, University of California, San Francisco Robert H. Bartlett, University of Michigan Medical Center Arthur Caplan, University of Pennsylvania Mitchell P. Fink, University of Pittsburgh Robert Knopp, St. Paul Regions Medical Center Howard K. Koh, Harvard School of Public Health Barbara Gill MacArthur, Tallahassee Memorial Healthcare Jerold R. Mande, Yale University School of Medicine David Meltzer, University of Chicago Tracy C. Schmidt, Intermountain Donor Services, Salt Lake City Richard Thaler, University of Chicago Rachael Wong, Kokua Mau Continuous Care Partnership, Hawaii Stuart J. Youngner, Case Western Reserve University

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Organ Donation: Opportunities for Action 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 Bernard Lo, University of California, San Francisco, and Judith R. Lave, University of Pittsburgh. Appointed by the NRC and the 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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Organ Donation: Opportunities for Action Preface Organ transplantation offers immense benefits. It extends the lives and improves the quality of life of thousands of individuals each year. However, the field faces the challenge of reducing the ever widening gap between the demand for and the supply of transplantable organs. In looking back over the slightly more than two decades since enactment of the National Organ Transplant Act, we can see progress in the wide range of ongoing efforts to improve organ donation rates in the United States. Furthermore, this report comes at a time of focused efforts to improve the quality, coordination, and reliability of the multiple organizations and systems involved in organ donation. In seeking to reduce the gap between supply and demand for transplantable organs, the committee notes that several policies and practices beyond its purview offer considerable potential. These include strengthening preventive efforts to improve health and reduce the need for transplantation, ensuring equitable access to transplantation by negating current financial and insurance constraints, and providing ongoing access to immunosuppressive medications to ensure that each donated organ is fully used. Many people have thought long and hard about possible solutions to the shortage of transplantable organs; and the committee greatly benefited from the depth and breadth of the scientific, ethical, and policy literature and from the insights provided by individuals who met with the committee in workshops, open sessions, and discussions.

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Organ Donation: Opportunities for Action It was a privilege and a pleasure to chair this Institute of Medicine committee, whose diverse and remarkable members brought their own rich personal, disciplinary, and professional perspectives and insights to bear on this important topic. Committee discussions and deliberations were always illuminating, because members were devoted to carefully and thoughtfully examining the complex issues in light of the best available evidence and arguments. It is probably safe to say that by the end no single individual held all of the same positions that he or she had held at the outset. The committee could not have accomplished its goals without the unstinting support, valuable advice, and constant good cheer provided by Cathy Liverman and her staff. We are grateful to them. The committee hopes that this report will open up discussions, stimulate actions at many levels, and contribute to efforts that can increase the supply of transplantable organs. James F. Childress, Chair Committee on Increasing Rates of Organ Donation

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Organ Donation: Opportunities for Action Acknowledgments The committee wishes to acknowledge the valuable contributions that were made to this study by many individuals who shared their expertise with the committee. The committee is very appreciative of the presentations by Gail Agrawal and Jeffrey Prottas at the committee’s first meeting in March 2005. The committee greatly benefited from the opportunity for discussion with the researchers and healthcare professionals who presented informative talks at the committee’s scientific workshop in June 2005 and at the committee’s October 2005 meeting (Appendix B). We also thank those individuals who provided testimony during the public comment sessions (Appendix B). The Division of Transplantation of the Health Resources and Services Administration cosponsored this study; and the committee greatly appreciates the assistance and the support that it received from Jim Burdick, Hui-Hsing Wong, Sherry Whipple, Mary Ganikos, Virginia McBride, Jade Perdue, Michael Dreis, and others. The committee also thanks The Greenwall Foundation for cosponsoring this study and especially thanks William Stubing for his support of this project. A special thanks goes to John Gallagher, who served as a consultant to the committee. His insights and analysis greatly assisted the committee in addressing issues regarding donation after circulatory determination of death. The committee also appreciates the input by Laura Siminoff on the determinants of organ donation. We also want to thank Jimmy Light for his technical review and his insights on the issues of donation after circulatory determination of death. Mark Schnitzler and Julia Mahoney served as

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Organ Donation: Opportunities for Action technical reviewers, and we greatly appreciate their time and insightful comments. The committee wishes to thank the many individuals who talked with committee members regarding specific issues. The committee particularly wants to thank Paul Schwab and members of the Association of Organ Procurement Organizations and Chuck Mowll of the Joint Commission on Accreditation of Healthcare Organizations. The contributions of Kathi Hanna and Kathryn Brown, consultants to the committee, were valuable to the committee’s work. The committee also greatly appreciates the assistance provided by the interns who worked on this study: Greg Strait, Victoria Ingenito, and Ana Banerji Mukherjee.

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Organ Donation: Opportunities for Action Contents     SUMMARY   1 1   INTRODUCTION   15      Scope of This Report,   17      Overview and History of the Current U.S. System,   18      International Perspective,   26      Terminology,   30      U.S. Efforts to Increase Organ Donation,   31      The Economic Value of Increasing the Organ Supply,   33      Emphasis on Prevention,   36      On the Horizon,   37      Overview of This Report,   38      References,   40 2   TRENDS AND PATTERNS   45      Organ Donation Statistics and Trends,   45      Who Donates? Individual and Family Decisions,   62      References,   71 3   PERSPECTIVES AND PRINCIPLES   77      The Committee’s Charge,   77      Perspectives and Principles,   78      Criteria for Evaluating Proposed Changes,   90      References,   91

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Organ Donation: Opportunities for Action            4   SYSTEMS TO SUPPORT ORGAN DONATION   93      Context of the Current U.S. Organ Donation System,   95      Organ Donation and Transplantation Breakthrough Collaboratives,   101      Ongoing Evolution of the Request Process,   106      A Framework of Trust,   110      Next Steps,   113      Summary and Recommendations,   119      References,   120 5   EXPANDING THE POPULATION OF POTENTIAL DONORS   127      Background and Issues,   128      Assessment of DCDD Strategies in the United States,   141      General Ethical Considerations,   143      Reexamination of Uncontrolled DCDD,   154      Next Steps for DCDD,   156      Expanded Criteria for Organ Donation,   160      Summary and Recommendations,   167      References,   169 6   PROMOTING AND FACILITATING INDIVIDUAL AND FAMILY DECISIONS TO DONATE   175      A Framework for Informed Choice,   176      Mandated Choice,   177      Voluntary Choice: Expanding Opportunities to Document Donation Decisions,   181      Public Education,   187      Summary and Recommendations,   199      References,   200 7   PRESUMED CONSENT   205      Routine Removal,   206      Presumed Consent,   208      Conclusions,   225      Summary and Recommendation,   226      References,   227 8   INCENTIVES FOR DECEASED DONATION   229      History and Context,   230      Why a Free Market in Organs Is Problematic,   231      Regulated Commerce in Organs,   239      Financial Incentives Within a Donation Framework,   247

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Organ Donation: Opportunities for Action                 Payments as a Token of Gratitude,   252      Nonfinancial Incentives: Preferential Access to Donated Organs,   253      Conclusions and Recommendations,   258      References,   259 9   ETHICAL CONSIDERATIONS IN LIVING DONATION   263      Background,   264      Risk-Benefit Ratios,   268      Other Ethical Considerations,   270      Next Steps,   274      Summary and Recommendations,   276      References,   277 10   OPPORTUNITIES FOR ACTION   281     APPENDIXES     A   Acronyms   283 B   Workshop Meetings   285 C   First-Person Consent Status and Organ Donor Registry Participation   289 D   Quantifying Self-Interest in Organ Donation   293 E   HRSA’s Extramural Research Program   299 F   Washington Hospital Center: Protocol for the Rapid Organ Recovery Program, Transplantation Services   305 G   Committee and Staff Biographies   317     INDEX   325

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Organ Donation: Opportunities for Action ORGAN DONATION

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