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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.

Major support for this project was provided by the National Institute for Nursing Research (NIH Task Order #79), the Greenwall Foundation, the Project on Death in America of the Open Society Institute, and the National Cancer Institute. Additional support was provided by the Health Services and Resources Administration, the Robert Wood Johnson Foundation, the National Heart Lung and Blood Institute, the National Institute of Mental Health, and the National Institute for Child Health and Development. The views presented are those of the Institute of Medicine Committee on Palliative and End-of-Life Care for Children and Their Families and are not necessarily those of the funding organization.

Library of Congress Cataloging-in-Publication Data

When children die : improving palliative and end-of-life care for children and their families / Committee on Palliative and End-of-Life Care for Children and Their Families, Board on Health Sciences Policy ; Marilyn J. Field and Richard E. Behrman, editors.

p. ; cm.

Includes bibliographical references and index.

ISBN 0-309-08437-7 (hardcover)

1. Terminally ill children—Care. 2. Terminally ill children—Family relationships. 3. Palliative treatment.

[DNLM: 1. Terminal Care—Child—United States. 2. Health Policy—United States. 3. Patient Participation—Child—United States. 4. Professional-Family Relations—United States. 5. Terminal Care—economics—United States. 6. Terminal Care—legislation & jurisprudence—United States. WS 200 W567 2002] I. Field, Marilyn J. (Marilyn Jane) II. Behrman, Richard E., 1931- III. Institute of Medicine (U.S.). Committee on Palliative and End-of-Life Care for Children and Their Families.

RJ249 .W445 2002



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Front cover: Original photograph by Timothy D. Costich, M.D., F.A.A.P.; design and photo manipulation by Francesca Moghari.

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