,Textbook of
Interdisciplinary
Pediatric
Palliative Care
Joanne Wolfe, MD, MPH
Division Chief, Pediatric Palliative Care Service
Department of Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Director, Pediatric Palliative Care
Children’s Hospital Boston
Assistant Professor of Pediatrics
Harvard Medical School
Boston, Massachusetts
Pamela S. Hinds, PhD, RN, FAAN
Director, Department of Nursing Research and Quality Outcomes
Children’s National Medical Center
Professor of Pediatrics
The George Washington University
Washington, DC
Barbara M. Sourkes, PhD
John A. Kriewall and Elizabeth A. Haehl Director
Palliative Care Program
Lucile Packard Children’s Hospital at Stanford
Associate Professor of Pediatrics
Stanford University School of Medicine
Stanford, California
,1600 John F. Kennedy Blvd.
Ste 1800
Philadelphia, PA 19103-2899
TEXTBOOK OF INTERDISCIPLINARY PEDIATRIC PALLIATIVE CARE ISBN: 978-1-4377-0262-0
Copyright © 2011 by Saunders, an imprint of Elsevier Inc.
No part of this publication may be reproduced or transmitted in any form or by any means, electronic or
mechanical, including photocopying, recording, or any information storage and retrieval system, without
permission in writing from the publisher. Details on how to seek permission, further information about
the Publisher’s permissions policies and our arrangements with organizations such as the Copyright
Clearance Center and the Copyright Licensing Agency can be found at our website: www.elsevier.com/
permissions.
This book and the individual contributions contained in it are protected under copyright by the
Publisher (other than as may be noted herein).
Notices
Knowledge and best practice in this field are constantly changing. As new research and experience
broaden our understanding, changes in research methods, professional practices, or medical
treatment may become necessary.
Practitioners and researchers must always rely on their own experience and knowledge in
evaluating and using any information, methods, compounds, or experiments described herein. In
using such information or methods they should be mindful of their own safety and the safety of
others, including parties for whom they have a professional responsibility.
With respect to any drug or pharmaceutical products identified, readers are advised to check the
most current information provided (i) on procedures featured or (ii) by the manufacturer of each
product to be administered, to verify the recommended dose or formula, the method and duration
of administration, and contraindications. It is the responsibility of practitioners, relying on their own
experience and knowledge of their patients, to make diagnoses, to determine dosages and the best
treatment for each individual patient, and to take all appropriate safety precautions.
To the fullest extent of the law, neither the Publisher nor the authors, contributors, or editors,
assume any liability for any injury and/or damage to persons or property as a matter of products
liability, negligence or otherwise, or from any use or operation of any methods, products,
instructions, or ideas contained in the material herein.
Library of Congress Cataloging-in-Publication Data
Textbook of interdisciplinary pediatric palliative care/ [edited by] Joanne Wolfe, Pamela Hinds,
Barbara Sourkes.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-4377-0262-0 (hardcover : alk. paper) 1. Terminally ill children–Care. 2. Palliative treatment.
I. Wolfe, Joanne. II. Hinds, Pamela S. III. Sourkes, Barbara M.
[DNLM: 1. Palliative Care. 2. Child. 3. Patient Care Team. 4. Professional-Family Relations.
5. Professional-Patient Relations. 6. Terminal Care. WB 310]
RJ249.T49 2011
362.17’5083–dc22
2010027305
Acquisitions Editor: Pamela Hetherington
Publishing Services Manager: Anne Altepeter
Team Manager: Radhika Pallamparthy
Project Managers: Cindy Thoms/Vijay Antony Raj Vincent
Senior Book Designer: Ellen Zanolle
Cover and frontispiece art: Evelyn Berde
Printed in China
Last digit is the print number: 9 8 7 6 5 4 3 2 1
, With love for Sam, Hannah, Ben,
and Michael
Joanne Wolfe
To Ron, Ben, and Adam Griffin for caring and believing,
and to Wayne L. Furman, Linda L. Oakes, and
Charles Pratt for having always known the essential
nature of pediatric palliative care and research
Pamela Hinds
For Talia Jade
and
Eric & David
Barbara Sourkes
And to the colleagues from whom we have
learned and the children and families
for whom we have had the privilege to care
Interdisciplinary
Pediatric
Palliative Care
Joanne Wolfe, MD, MPH
Division Chief, Pediatric Palliative Care Service
Department of Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Director, Pediatric Palliative Care
Children’s Hospital Boston
Assistant Professor of Pediatrics
Harvard Medical School
Boston, Massachusetts
Pamela S. Hinds, PhD, RN, FAAN
Director, Department of Nursing Research and Quality Outcomes
Children’s National Medical Center
Professor of Pediatrics
The George Washington University
Washington, DC
Barbara M. Sourkes, PhD
John A. Kriewall and Elizabeth A. Haehl Director
Palliative Care Program
Lucile Packard Children’s Hospital at Stanford
Associate Professor of Pediatrics
Stanford University School of Medicine
Stanford, California
,1600 John F. Kennedy Blvd.
Ste 1800
Philadelphia, PA 19103-2899
TEXTBOOK OF INTERDISCIPLINARY PEDIATRIC PALLIATIVE CARE ISBN: 978-1-4377-0262-0
Copyright © 2011 by Saunders, an imprint of Elsevier Inc.
No part of this publication may be reproduced or transmitted in any form or by any means, electronic or
mechanical, including photocopying, recording, or any information storage and retrieval system, without
permission in writing from the publisher. Details on how to seek permission, further information about
the Publisher’s permissions policies and our arrangements with organizations such as the Copyright
Clearance Center and the Copyright Licensing Agency can be found at our website: www.elsevier.com/
permissions.
This book and the individual contributions contained in it are protected under copyright by the
Publisher (other than as may be noted herein).
Notices
Knowledge and best practice in this field are constantly changing. As new research and experience
broaden our understanding, changes in research methods, professional practices, or medical
treatment may become necessary.
Practitioners and researchers must always rely on their own experience and knowledge in
evaluating and using any information, methods, compounds, or experiments described herein. In
using such information or methods they should be mindful of their own safety and the safety of
others, including parties for whom they have a professional responsibility.
With respect to any drug or pharmaceutical products identified, readers are advised to check the
most current information provided (i) on procedures featured or (ii) by the manufacturer of each
product to be administered, to verify the recommended dose or formula, the method and duration
of administration, and contraindications. It is the responsibility of practitioners, relying on their own
experience and knowledge of their patients, to make diagnoses, to determine dosages and the best
treatment for each individual patient, and to take all appropriate safety precautions.
To the fullest extent of the law, neither the Publisher nor the authors, contributors, or editors,
assume any liability for any injury and/or damage to persons or property as a matter of products
liability, negligence or otherwise, or from any use or operation of any methods, products,
instructions, or ideas contained in the material herein.
Library of Congress Cataloging-in-Publication Data
Textbook of interdisciplinary pediatric palliative care/ [edited by] Joanne Wolfe, Pamela Hinds,
Barbara Sourkes.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-4377-0262-0 (hardcover : alk. paper) 1. Terminally ill children–Care. 2. Palliative treatment.
I. Wolfe, Joanne. II. Hinds, Pamela S. III. Sourkes, Barbara M.
[DNLM: 1. Palliative Care. 2. Child. 3. Patient Care Team. 4. Professional-Family Relations.
5. Professional-Patient Relations. 6. Terminal Care. WB 310]
RJ249.T49 2011
362.17’5083–dc22
2010027305
Acquisitions Editor: Pamela Hetherington
Publishing Services Manager: Anne Altepeter
Team Manager: Radhika Pallamparthy
Project Managers: Cindy Thoms/Vijay Antony Raj Vincent
Senior Book Designer: Ellen Zanolle
Cover and frontispiece art: Evelyn Berde
Printed in China
Last digit is the print number: 9 8 7 6 5 4 3 2 1
, With love for Sam, Hannah, Ben,
and Michael
Joanne Wolfe
To Ron, Ben, and Adam Griffin for caring and believing,
and to Wayne L. Furman, Linda L. Oakes, and
Charles Pratt for having always known the essential
nature of pediatric palliative care and research
Pamela Hinds
For Talia Jade
and
Eric & David
Barbara Sourkes
And to the colleagues from whom we have
learned and the children and families
for whom we have had the privilege to care
