Palliative Care for Infants, Children, and Adolescents: A Practical Handbook

556 Pages·2011·3.07 MB·English

by  Brian S Carter

Palliative Care for Infants, Children, and Adolescents
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Palliative Care
for Infants, Children,
and Adolescents
A PRACTICAL HANDBOOK
Second Edition
Edited by
Brian S. Carter, M.D., F.A.A.P.
Marcia Levetown, M.D., F.A.A.P., F.A.A.H.P.M.
Sarah E. Friebert, M.D., F.A.A.P., F.A.A.H.P.M.
The Johns Hopkins University Press
BALTIMORE
Drug dosage: The authors and publisher have exerted every effort to ensure that the selection and dosage
of drugs discussed in this text are in accord with recommendations and practice at the time of publica-
tion. However, in view of ongoing research, changes in governmental regulations, and the constant
fl ow of information relating to drug therapy and drug reactions, the reader is urged to check the pack-
age insert of each drug for any change in indications and dosage and for warnings and precautions.
This is particularly important when the recommended agent is a new and/or infrequently used drug.
©2004,2011 The Johns Hopkins University Press
All rights reserved. Published 2011
Printed in the United States of America on acid-free paper
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Library of Congress Cataloging-in-Publication Data
Palliative care for infants, children, and adolescents : a practical handbook / edited by Brian S.
Carter, Marcia Levetown, and Sarah E. Friebert. — 2nd ed.
p. ; cm.
Includes bibliographical references and index.
ISBN-13:978-1-4214-0148-5 (hardcover : alk. paper)
ISBN-13:978-1-4214-0149-2 (pbk. : alk. paper)
ISBN-10:1-4214-0148-7 (hardcover : alk. paper)
ISBN-10:1-4214-0149-5 (pbk. : alk. paper)
1. Terminally ill children—Care—Handbooks, manuals, etc. I. Carter, Brian S., 1957–
II. Levetown, Marcia, 1960– III. Friebert, Sarah E.
[DNLM: 1. Palliative Care—methods. 2. Terminal Care—methods. 3. Adolescent. 4. Child.
5. Chronic Disease. 6. Infant. WS 200]
RJ249.P3562011
618.92'0028—dc22 2010050249
A catalog record for this book is available from the British Library.
Special discounts are available for bulk purchases of this book. For more information, please contact
Special Sales at 410-516-6936 or [email protected].
The Johns Hopkins University Press uses environmentally friendly book materials, including recycled
text paper that is composed of at least 30 percent post-consumer waste, whenever possible.
With thankful remembrance to Drs. William A. Silverman and Gerald B.
Merenstein for encouragement and support.
BSC
In honor of my husband, Philip Blum, M.D., who encouraged me to
follow my heart, regardless of the consequences; my children, Lila and
Alex, who understood when I loved children in addition to my own; the
Project on Death in America; my friends and colleagues over the years,
for their support; and the patients and families who taught me about
what is truly important by allowing me to “be with them” during the
most intimate and sacred time of their lives.
ML
With gratitude and blessings to all of the children and families who have
taught, led, inspired, indulged, and trusted me over the years.
SEF
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CONTENTS
List of Contributors ix
Preface xv
PART I SOCIETAL AND INSTITUTIONAL ISSUES
1 Epidemiology and Health Services Research 3
Chris Feudtner and Kari R. Hexem
2 Goals, Values, and Confl ict Resolution 26
Carson Strong, Chris Feudtner, M. Karen Ballard, Brian S. Carter,
and Deborah L. Dokken
3 Barriers to Integrating Palliative Care and Potential Solutions 56
Patrick M. Jones, Sally Sehring, Dianne Gray, and David M. Steinhorn
4 Educational Initiatives 85
Betty Ferrell, Hollye Harrington Jacobs, Jeffrey C. Klick,
John M. Saroyan, Elana E. Evan, Margaret Comeau, Sarah E. Friebert,
and David Browning
5 The Art of Advocacy 114
Devon Dabbs, Lori Butterworth, Mary Jo Gilmer, Brian Greffe,
and Melody Hellsten
PART II THE CYCLE OF CARE
6 Decision Making 139
Robert J. Graham, Marcia Levetown, and Margaret Comeau
7 Communication Skills and Relational Abilities 169
Marcia Levetown, Elaine C. Meyer, and Dianne Gray
8 Psychosocial Needs of the Child and Family 202
Stacy F. Orloff, Barbara Jones, and Kris Ford
9 Spiritual Dimensions 227
Dexter Lanctot, Wynne Morrison, Kendra D. Koch, and Chris Feudtner
10 Holistic Management of Symptoms 244
Richard Hain, Lonnie Zeltzer, Melody Hellsten, Susan O. Cohen,
Stacy F. Orloff, and Dianne Gray
11 Bereavement 275
Stacy F. Orloff, Suzanne S. Toce, Lizabeth Sumner, and Lee Ann Grimes
12 The Other Side of Caring: Caregiver Suffering 309
Cynda H. Rushton and M. Karen Ballard
PART III SPECIAL CARE ENVIRONMENTS
AND PATIENT POPULATIONS
13 Palliative Care in the Neonatal-Perinatal Period 345
Suzanne S. Toce, Steven R. Leuthner, Deborah L. Dokken,
Anita J. Catlin, Jennifer Brown, and Brian S. Carter
14 Palliative Care in the Pediatric Intensive Care Setting 387
Kathryn Weise, Marcia Levetown, Carol Tuttle, and Stephen Liben
15 Palliative Care in the Home, School, and Community 414
Susan M. Huff, Stacy F. Orloff, Janice Wheeler, and Lee Ann Grimes
16 Palliative Care for the Child Who Has a Genetic Condition 441
Sara L. Perszyk and Brian S. Carter
17 Integrating Palliative Care with HIV Care and Treatment 465
Nancy Hutton, Cora K. Welsh, and Maureen E. Lyon
18 Integrating Palliative Care with Pediatric Hematology/Oncology 488
Sarah E. Friebert, Brian Greffe, and Janice Wheeler
Index 521
contents
viii
CONTRIBUTORS
M. Karen Ballard, M.C.M., B.C.C., Director, Chaplaincy Services
Department, Akron Children’s Hospital, Akron, Ohio
Jennifer Brown, Parent and Consultant, Memphis, Tennessee
David Browning, M.S.W., B.C.D., Senior Scholar and Co-Director,
Patient Safety and Quality Initiatives, Institute for Professionalism
and Ethical Practice, Children’s Hospital Boston and Harvard Medical
School, Waltham, Massachusetts
Lori Butterworth, Co-Founder, Children’s Hospice and Palliative Care
Coalition; Founder, Jacob’s Heart Children’s Cancer Support Services,
Santa Cruz, California
Brian S. Carter, M.D., F.A.A.P., Professor of Pediatrics, Division of
Neonatology, Monroe Carell, Jr. Children’s Hospital at Vanderbilt,
Nashville, Tennessee
Anita J. Catlin, D.N.Sc., F.N.P., F.A.A.N., Professor of Nursing, Sonoma
State University, Rohnert Park, California
Susan O. Cohen, M.A., A.D.T.R., C.C.L.S., Pediatric Advanced Illness
Care Coordinator, The David Center for Children’s Pain and Palliative
Care, Hackensack Medical Center, Hackensack, New Jersey
Margaret Comeau, M.H.A., Director, Catalyst Center, Health and
Disability Working Group, Boston University School of Public Health,
Boston, Massachusetts
Devon Dabbs, Co-Founder and Executive Director, Children’s Hospice
and Palliative Care Coalition, Watsonville, California
Deborah L. Dokken, M.P.A., Consultant and Parent Advocate, Chevy
Chase, Maryland
ix