Pediatric Palliative Care: A Model for Exemplary Practice

245 Pages·2021·3.878 MB·English

by  Betty Davies, Rose Steele, Jennifer Baird

Pediatric Palliative Care
Pediatric Palliative Care: A Model for Exemplary Practice lays out a road map for
health-care providers interested in optimizing care for seriously ill children
and their families.
Grounded in clinical practice and the study of positive rather than
problematic encounters between providers and parents, this book presents
an evidence-based model of exemplary interaction. The chapters offer a
clear understanding of the complex, holistic process of interaction between
providers and parents, as well as the personal and professional knowledge
and skills needed to interact in optimal ways.
This is a one-of-a-kind guidebook for health-care providers interested in
(re)discovering how to maximize positive outcomes for both families and
providers. It is also a valuable source of inspiration for educators, supervisors,
and hospital administrators who want to facilitate personal and professional
development and create supportive environments for students, providers,
seriously ill children, and their families.
Betty Davies, MSN, PhD, is an adjunct professor in the School of
Nursing, University of Victoria, British Columbia, Canada, and professor
emerita in the Department of Family Health Care Nursing at the University
of California, San Francisco, USA.
Rose Steele, RN, PhD, is a full professor in the School of Nursing, Faculty
of Health, York University, Toronto, Ontario, Canada.
Jennifer Baird, RN, MPH, MSW, PhD, is the director of Clinical
Services Education and Research at Children’s Hospital Los Angeles,
California, USA.
The Series in Death, Dying, and Bereavement
Series Editors: Robert A. Neimeyer, PhD, Portland Institute for Loss
and Transition, Oregon, USA, and
Darcy L. Harris, PhD, Western University Canada, Ontario, Canada
Volumes published in the Series in Death, Dying, and Bereavement are
representative of the multidisciplinary nature of the intersecting fields of death
studies, suicidology, end-of-life care, and grief counseling. The series meets
the needs of clinicians, researchers, paraprofessionals, pastoral counselors, and
educators by providing cutting edge research, theory, and best practices on
the most important topics in these fields—for today and for tomorrow.
Prescriptive Memories in Grief and Loss
The Art of Dreamscaping
Edited by Nancy Gershman and Barbara E. Thompson
Loss, Grief, and Attachment in Life Transitions
A Clinician’s Guide to Secure Base Counseling
Jakob van Wielink, Leo Wilhelm, and Denise van Geelen-Merks
Non-Death Loss and Grief
Context and Clinical Implications
Edited by Darcy L. Harris
Superhero Grief
The Transformative Power of Loss
Edited by Jill A. Harrington and Robert A. Neimeyer
New Techniques of Grief Therapy
Bereavement and Beyond
Edited by Robert A. Neimeyer
Pediatric Palliative Care
A Model for Exemplary Practice
Betty Davies, Rose Steele, and Jennifer Baird
For more information about this series, please visit www.routledge.com/
Series-in-Death-Dying-and-Bereavement/book-series/SE0620.
Pediatric Palliative Care
A Model for Exemplary Practice
Betty Davies, Rose Steele, and
Jennifer Baird
First published 2022
by Routledge
605 Third Avenue, New York, NY 10158
and by Routledge
2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2022 Betty Davies, Rose Steele, and Jennifer Baird
The right of Betty Davies, Rose Steele, and Jennifer Baird to be
identified as authors of this work has been asserted by them in
accordance with sections 77 and 78 of the Copyright, Designs, and
Patents Act 1988.
All rights reserved. No part of this book may be reprinted or
reproduced or utilised in any form or by any electronic, mechanical,
or other means, now known or hereafter invented, including
photocopying and recording, or in any information storage or retrieval
system, without permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks
or registered trademarks, and are used only for identification and
explanation without intent to infringe.
Library of Congress Cataloging-in-Publication Data
Names: Davies, Betty, Ph. D. author. | Steele, Rose, author. | Baird,
Jennifer (Nurse) author.
Title: Pediatric palliative care : a model for exemplary practice / Betty
Davies, Rose Steele, Jennifer Baird.
Description: New York, NY : Routledge, 2021. | Series: Series in
death, dying, and bereavement | Includes bibliographical references
and index.
Identifiers: LCCN 2021029590 (print) | LCCN 2021029591 (ebook) |
ISBN 9780367365684 (paperback) | ISBN 9780367365691
(hardback) | ISBN 9780429352393 (ebook)
Subjects: LCSH: Terminally ill children—Care. | Children—Hospice care.
Classification: LCC RJ249 .D38 2021 (print) | LCC RJ249 (ebook) |
DDC 618.92/0029—dc23
LC record available at https://lccn.loc.gov/2021029590
LC ebook record available at https://lccn.loc.gov/2021029591
ISBN: 978-0-367-36569-1 (hbk)
ISBN: 978-0-367-36568-4 (pbk)
ISBN: 978-0-429-35239-3 (ebk)
DOI: 10.4324/9780429352393
Typeset in Bembo
by Apex CoVantage, LLC
We dedicate this book to those health-care providers
who consistently focus on what matters in the
moment for children with life-threatening illness and
their families.

Contents
Preface ix
Series Editors’ Foreword xix
Acknowledgments xxi
About the Authors xxiv
List of Boxes, Figures, and Tables xxvi
List of Abbreviations xxviii
1 Introduction to interaction 1
2 Metaphor and Overview of Model of Exemplary
Interaction 13
3 Worldview, Values, and Commitment to Authentic
Engagement 26
4 Process of Attuning 46
5 Direct Care Activities 67
6 Connecting Behaviors 89
7 Personal Influencing Factors 108
8 Pediatric Health-Care Provider–Parent Relationship 130
9 Setting and Teamwork Contextual Factors 148
10 Institutional and Societal Contextual Factors 168
viii Contents
11 Output From Exemplary Interaction: A Milieu
of Mattering 182
12 Implications of the Model of Exemplary Interaction 195
Index 211
Preface
The Background
When Betty’s friend from childhood, Arlene, was a young mother of two
preschool boys, she was diagnosed with stage 3 lymphoma. Over several
years, Arlene endured total body radiation three times and countless rounds
of chemotherapy. She turned out to be one of medicine’s rare and celebrated
miracles—she survived. Her experience with life-threatening illness taught
Arlene that life is too short to not follow your dream. So she returned to
school in midlife and became a much-acclaimed and award-winning artist.
During the years of Arlene’s initial cancer experience, she often felt that
the physicians related to her as just another source of data and many nurses
treated her as just another patient on their day’s to-do list. Certainly, she
also encountered some very kind, thoughtful, and competent health-care
professionals (HCPs), but they were comparatively few in number. Fur-
ther, the distressing impact of the negative encounters remained among
her worst memories of being so ill. Nearly 40 years later, Arlene was diag-
nosed in 2011 with pancreatic cancer. Despite her fears and trepidations,
she chose to have chemotherapy once again, receiving treatment in the
same hospital as before. But Arlene lamented that in the decades since she
was last there, the treatments had become more complex, many tests were
so much more complicated, and the equipment reminded her of a science
fiction movie. Sadly, when it came to her as a person, nothing had changed
for the better. She felt even more of an object in a much larger petri dish.
All she wanted was for HCPs to remember that she was a human being
inside the hospital gown.
Arlene’s lament echoes in the comments we (the authors) continue to
hear from many people about their contact with current health-care sys-
tems. In multiple research studies about parents’ experiences in pediatric
palliative care, whether or not directly asked about their encounters with
pediatric health-care providers (PHCPs), parents inevitably talk about how
important those exchanges are, particularly the negative ones that leave open
wounds in their soul. One mother remained at the bedside of her child
who had died about an hour before shift change. When making morning