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Ethical Dilemmas in Pediatrics
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Details

  • Page extent: 316 pages
  • Size: 247 x 174 mm
  • Weight: 0.8 kg

Library of Congress

  • Dewey number: 174.2
  • Dewey version: 22
  • LC Classification: RJ47.8 .E865 2005
  • LC Subject headings:
    • Pediatrics--Moral and ethical aspects
    • Pediatrics--Moral and ethical aspects--Case studies
    • Medical ethics
    • Pediatrics--ethics--Case Reports
    • Adolescent

Library of Congress Record

Hardback

 (ISBN-13: 9780521847445 | ISBN-10: 0521847443)




Ethical Dilemmas in Pediatrics

Cases and Commentaries




Children in precarious health present particular problems for healthcare professionals because of their intimate relation to their family, and because of the family’s need to provide major long-term support and to be actively involved in the decisions about their children’s care. This collection of cases and commentaries in pediatrics highlights the difficult ethical dilemmas that can arise during high-tech hospital care of children in precarious circumstances. It serves as a teaching tool for clinical ethics, as an introduction for medical students and residents, and as a review for practicing physicians. Clinical cases are described in detail by the physicians involved, who focus on the ethical issues arising during treatment. Each case is then commented on in detail by a philosopher or other bioethicist. It thus serves as an introduction to contemporary clinical bioethics, but with a firm grounding in the practicalities of real-life pediatric care in the hospital setting.







Ethical Dilemmas in Pediatrics

Cases and Commentaries




Edited by

Lorry R. Frankel

Amnon Goldworth

Mary V. Rorty

and

William A. Silverman







CAMBRIDGE UNIVERSITY PRESS
Cambridge, New York, Melbourne, Madrid, Cape Town, Singapore, São Paulo

Cambridge University Press
The Edinburgh Building, Cambridge CB2 2RU, UK
Published in the United States of America by Cambridge University Press, New York

www.cambridge.org
Information on this title: www.cambridge.org/9780521847445

© Cambridge University Press 2005

This book is in copyright. Subject to statutory exception
and to the provisions of relevant collective licensing agreements,
no reproduction of any part may take place without
the written permission of Cambridge University Press.

First published 2005

Printed in the United Kingdom at the University Press, Cambridge

A catalog record for this book is available from the British Library

Library of Congress Cataloging in Publication data

ISBN-13 978-0-521-84744-5 hardback
ISBN-10 0-521-84744-3 hardback

Cambridge University Press has no responsibility for the persistence or accuracy of URLs for external or third-party internet websites referred to in this book, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate.

Every effort has been made in preparing this book to provide accurate and up-to-date information which is in accord with accepted standards and practice at the time of publication. Although case histories are drawn from actual cases, every effort has been made to disguise the identities of the individuals involved. Nevertheless, the authors, editors and publisher can make no warranties that the information contained herein is totally free from error, not least because clinical standards are constantly changing through research and regulation. The authors, editors and publishers therefore disclaim all liability for direct or consequential damages resulting from the use of material contained in this book. Readers are strongly advised to pay careful attention to information provided by the manufacturer of any drugs or equipment that they plan to use.







Contents




  List of contributors page viii
  Preface xi
  Introduction 1
Part I   Therapeutic misalliances
1.1   Unconventional medicine in the pediatric intensive care unit 13
  Chester J. Randle Jr.
1.2   Role responsibility in pediatrics: appeasing or transforming parental demands? 21
  Richard B. Miller
1.3   Topical discussion 30
2.1   The extremely premature infant at the crossroads 34
  Ronald Cohen and Eugene Kim
2.2   The extremely premature infant at the crossroads: ethical and legal considerations 37
  Simon N. Whitney
2.3   Topical discussion 52
3.1   Munchausen syndrome by proxy 55
  Manuel Garcia-Careaga and John A. Kerner Jr.
3.2   Some conceptual and ethical issues in Munchausen syndrome by proxy 67
  Frances M. Kamm
3.3   Topical discussion 80
Part II   Medical futility
4.1   Letting go: a study in pediatric life-and-death decision making 89
  Lawrence H. Mathers
4.2   Near-drowning, futility, and the limits of shared decision making 95
  Simon N. Whitney
4.3   Topical discussion 108
5.1   Long-term ventilation in a child with severe central nervous system impairment 113
  Ronald M. Perkin, Robert Orr, and Stephen Ashwal
5.2   Autonomy, community, and futility: moral paradigms for the long-term ventilation of a severely impaired child 119
  Anita Silvers
5.3   Topical discussion 131
6.1   Complexities in the management of a brain-dead child 135
  Lorry R. Frankel and Chester J. Randle Jr.
6.2   The moral arena in the management of a brain-dead child 140
  Amnon Goldworth
6.3   Topical discussion 148
Part III   Life by any means
7.1   Where should a child die? 157
  Roger Burne
7.2   Where should a child (in the USA) die? 162
  William A. Silverman
7.3   Topical discussion 166
8.1   Infant heart transplantation and hypoplastic left heart syndrome: what are the ethical issues? 170
  Clifford Chin
8.2   Infant heart transplantation and hypoplastic left heart syndrome: a response 177
  Joel E. Frader
8.3   Topical discussion 185
9.1   Liver and intestinal transplantation 190
  Manuel Garcia-Careaga, Ricardo Orlando Castillo, and John A. Kerner Jr.
9.2   Transplantation and adolescents 196
  Rosamond Rhodes
9.3   Topical discussion 212
Part IV   Institutional impediments to ethical action
10.1   Ethical problems encountered with oncology and bone marrow transplant patients 221
  Lorry R. Frankel and Joseph V. DiCarlo
10.2   Ethics in the pediatric intensive care unit: oncology and bone marrow transplant patients 229
  Linda Granowetter
10.3   Topical discussion 236
11.1   Nursing perspectives on withholding food and fluids in pediatrics 239
  Joy Penticuff
11.2   Ethics and clinical decision making: withholding food and information 246
  Mary V. Rorty
11.3   Topical discussion 253
12.1   Ethics and managed care 257
  Douglas S. Diekema
12.2   Challenging fidelity: the physician’s role in rationing 267
  Nancy S. Jecker
12.3   Topical discussion 277
  References 282
  Index 296






Contributors




Stephen Ashwal, M.D.
Department of Pediatrics, Division of Child Neurology, Loma Linda University Adventist Health Sciences Center, Loma Linda, California 92350, USA

Roger Burne, M.B., B.S.
St. Bartholomew's Medical Centre, Cowley Rd, Oxford OX4 1XB, UK

Ricardo Orlando Castillo, M.D.
Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Clifford Chin, M.D.
Department of Pediatrics, Division of Pediatric Cardiology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Ronald Cohen, M.D.
Division of Neonatal and Developmental Medicine, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Joseph V. DiCarlo, M.D.
Department of Pediatrics, Division of Critical Care Medicine, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Douglas S. Diekema, M.D.
Department of Emergency Services, Children's Hospital and Medical Center, Seattle, Washington 98105, USA

Joel E. Frader, M.D.
General Academic Pediatrics, Feinberg School of Medicine, 700 West Fullerton Avenue, Chicago, Illinois 60614, USA

Lorry R. Frankel, M.D.
Department of Pediatrics, Division of Critical Care Medicine, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Manuel Garcia-Careaga, M.D.
Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Amnon Goldworth, Ph.D.
Senior Medical Ethicist in Residence, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Linda Granowetter, M.D.
Columbia University Pediatric Oncology, 161 Fort Washington Avenue I-7, New York, New York 10032, USA

Nancy S. Jecker, Ph.D.
Department of Medical History and Ethics, School of Medicine, University of Washington, Seattle, Washington 98195, USA

Frances M. Kamm, Ph.D.
Kennedy School of Government, Harvard University, 79 JFK Street, Cambridge, Massachusetts 02138, USA

John A. Kerner, Jr., M.D.
Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Eugene Kim, M.D.
Chief of Neonatology, Santa Clara Valley Medical Center, 751 Bascom Avenue, San Jose, California 95128, USA

Lawrence H. Mathers, M.D., Ph.D.
Department of Pediatrics, Division of Critical Care Medicine, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA

Richard B. Miller, Ph.D.
Poynter Center for the Study of Ethics and American Institutions, Indiana University, Bloomington, Indiana 47405, USA

Robert Orr, M.D., C.M.
Director of Clinical Ethics, University of Vermont College of Medicine, Burlington, Vermont 05405, USA

Joy Penticuff, Ph.D., R.N., F.A.A.N.
School of Nursing, University of Texas at Austin, Austin, Texas 78701, USA

Ronald M. Perkin, M.D.
Department of Pediatrics, Brody School of Medicine, East Carolina University, Greenville, North Carolina 27834, USA

Chester J. Randle, Jr., M.D.
Department of Pediatrics, Kaiser Permanente, Oakland Medical Center, 280 West MacArthur Boulevard, Oakland, California 94611, USA

Rosamond Rhodes, Ph.D.
Director of Bioethics Education, Mount Sinai School of Medicine, One Gustav Levy Place, New York, New York 10029, USA

Mary V. Rorty, Ph.D.
Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA

William A. Silverman, M.D.
Professor of Pediatrics (retired), Columbia University College of Physicians & Surgeons, New York 10032, USA

Anita Silvers, Ph.D.
Department of Philosophy, San Francisco State University, 1600 Holloway Avenue, San Francisco, California 94132, USA

Simon N. Whitney, M.D., J.D.
Department of Family and Community Medicine, Baylor College of Medicine, 3701 Kirby Drive, Suite 600, Houston, Texas 77098, USA







Preface




The editors would like to offer their thanks to the authors of the chapters in this book for their thoughtful contributions. Inheritors of a long tradition of silent service, they have been willing to add their voices to an ongoing dialogue between providers of and observers of medical care in the late twentieth and early twenty-first centuries, for which we are grateful.

   The children and the families for whom we have had the privilege of caring during their various illnesses are honored as well in these pages, though the details of the cases have been changed by the authors to prevent any identification of particular patients.

   Although it is the physician’s voice that is most often heard in this volume, we gratefully acknowledge that the work of the hospital involves many helping professions, including nurses, therapists, chaplains, social workers, and clinical ethicists.

   The areas of pediatric medicine and of medical ethics have been impoverished by the loss of William A. Silverman, who died as this volume was in preparation.

   The book has been greatly helped by the thoughtful comments of anonymous reviewers and the scrupulous and authoritative editorial work of Hugh Brazier, and is dedicated to our families, who support our work, and to the children.


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