Pediatric palliative care

161 Pages·2016·3.161 MB·English

by  Hospice and Palliative Nurses Association;Ferrell, Betty

HPNA PALLIATIVE NURSING MANUALS
Pediatric Palliative Care
HPNA PALLIATIVE NURSING MANUALS
Series edited by: Betty R. Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN
Volume : Structure and Processes of Care
Volume 2: Physical Aspects of Care: Pain and Gastrointestinal
Symptoms
Volume 3: Physical Aspects of Care: Nutritional, Dermatologic,
Neurologic, and Other Symptoms
Volume 4: Pediatric Palliative Care
Volume 5: Spiritual, Religious, and Cultural Aspects of Care
Volume 6: Social Aspects of Care
Volume 7: Care of the Patient at the End of Life
Volume 8: Ethical and Legal Aspects of Care
HPNA PALLIATIVE NURSING MANUALS
Pediatric
Palliative Care
Edited by
Betty R. Ferrell, RN, PhD, MA,
FAAN, FPCN, CHPN
Professor and Director
Department of Nursing Research and Education
City of Hope Comprehensive Cancer Center
Duarte, California
1
1
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Library of Congress Cataloging-in-Publication Data
Pediatric palliative care (Ferrell)
Pediatric palliative care/edited by Betty R. Ferrell.
p. ; cm.—(HPNA palliative nursing manuals ; volume 4)
Includes bibliographical references and index.
ISBN 978–0–9–02448–7 (alk. paper)
I. Ferrell, Betty, editor. II. Hospice and Palliative Nurses Association, issuing body. III. Title.
IV. Series: HPNA palliative nursing manuals ; v. 4.
[DNLM: . Adolescent. 2. Child. 3. Infant. 4. Palliative Care. 5. Hospice and Palliative
Care Nursing-methods. 6. Pediatric Nursing-methods. WS 220]
R726.8
68.92′0029—dc23
20500832
This material is not intended to be, and should not be considered, a substitute for medical or other
professional advice. Treatment for the conditions described in this material is highly dependent on
the individual circumstances. And, while this material is designed to offer accurate information with
respect to the subject matter covered and to be current as of the time it was written, research
and knowledge about medical and health issues is constantly evolving and dose schedules for
medications are being revised continually, with new side effects recognized and accounted for
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Printed in the United States of America
on acid-free paper
Contents
Preface  vii
Contributors  ix
. Pediatric Hospice and Palliative Care  1
Vanessa Battista and Gwenn LaRagione
2. Symptom Management in Pediatric Palliative Care  25
Melody Brown Hellsten and Stacey Berg
3. Pediatric Pain: Knowing the Child Before You  47
Mary Layman Goldstein and Dana Kramer
4. Palliative Care in the Neonatal Intensive Care Unit  69
Cheryl Thaxton, Brigit Carter, and Chi Dang Hornik
v
5. Pediatric Care: Transitioning Goals of Care in
the Emergency Department, Intensive Care Unit,
and in Between  97
Barbara Jones, Marcia Levetown, and Melody Brown Hellsten
6. Grief and Bereavement in Pediatric Palliative Care  121
Rana Limbo and Betty Davies
Index 4

Preface
This is the fourth volume of a series being published by Oxford University
Press in collaboration with the Hospice and Palliative Nurses Association. The
intent of this series is to provide palliative care nurses with quick reference
guides to each of the key domains of palliative care.
Content for this series was derived primarily from the Oxford Textbook of
Palliative Nursing (4th edition, 205) which is also edited by Betty Ferrell, Nessa
Coyle, and Judith Paice, the editors of this series. The Contributors identified
in each volume are the authors of chapters in the Oxford Textbook of Palliative
Nursing from which the content was selected for this volume. The Textbook
contains more extensive content and references, so users of this Palliative
Nursing Series are encouraged to use the Textbook as an additional resource.
This volume focuses on the area of Pediatric Palliative Care. Chapters
address key elements of care for children and families, including pain and
symptom management, the provision of hospice and palliative care, and
bereavement support for families. This volume also describes settings of vii
pediatric care, including neonatal intensive care, emergency departments, and
pediatric intensive care units.
The authors of these chapters are pioneers in the field who have created
the models of caring for seriously ill children. There are enormous opportuni-
ties to extend palliative care to many other settings of pediatric care, and we
hope that this volume can serve as a guide.

Contributors
Vanessa Battista, MS, Chi Dang Hornik,
CPNP, CCRC PharmD, BCPS
Pediatric Nurse Practitioner Clinical Specialist in Neonatal
The Children’s Hospital Intensive Care
of Philadelphia Department of Pharmacy
Philadelphia, Pennsylvania Duke University Medical Center
Durham, North Carolina
Stacey Berg, MD
Professor of Pediatrics Barbara Jones, PhD, MSW
Baylor College of Medicine Associate Professor of Social Work
Cancer Center Co-Director of The Institute
Texas Children’s Cancer Center for Grief, Loss, and Family
Houston, Texas Survival
The University of Texas at Austin
Brigit Carter, PhD, RN, CCRN
Austin, Texas x
i
Assistant Professor of Nursing
Duke University Medical Center Dana Kramer, RN,
Durham, North Carolina MS, FNP-BC
Palliative Medicine NP Fellow
Betty Davies, RN, CT,
Memorial Sloan-Kettering
PhD, FAAN
Cancer Center
Adjunct Professor and Senior New York, New York
Scholar
School of Nursing Gwenn LaRagione, RN, BSN,
University of Victoria CCM, CHPPN
Victoria, Canada Nurse Coordinator
The Children’s Hospital
Mary Layman Goldstein, RN,
of Philadelphia
MS, ANP-BC, ACHPN
Philadelphia, Pennsylvania
Nurse Practitioner
Memorial Sloan-Kettering Marcia Levetown,
Cancer Center MD, FAAPHM
New York, New York Principal
HealthCare Communication
Melody Brown Hellsten, DNP,
Associates
RN, PPCNP-BC, CHPPN
Houston, Texas
Pediatric Nurse Practitioner
Texas Children’s Cancer
Center—PACT
Houston, Texas