Interdisciplinary Pediatric Palliative

Care, 2nd Edition Wolfe

Visit to download the full and correct content document:
https://ebookmeta.com/product/interdisciplinary-pediatric-palliative-care-2nd-edition-w
olfe/
More products digital (pdf, epub, mobi) instant
download maybe you interests ...

Palliative Care Perspectives 2nd Edition James L.

Hallenbeck

https://ebookmeta.com/product/palliative-care-perspectives-2nd-
edition-james-l-hallenbeck/

Hospice and Palliative Care for Companion Animals 2nd

Amir Shanan

https://ebookmeta.com/product/hospice-and-palliative-care-for-
companion-animals-2nd-amir-shanan/

Drugs in Palliative Care Andrew Dickman

https://ebookmeta.com/product/drugs-in-palliative-care-andrew-
dickman/

Textbook of Palliative Medicine and Supportive Care 3rd

Edition Eduardo Bruera

https://ebookmeta.com/product/textbook-of-palliative-medicine-
and-supportive-care-3rd-edition-eduardo-bruera/
Oxford Textbook of Palliative Care for Children 3rd
Edition Richard Hain

https://ebookmeta.com/product/oxford-textbook-of-palliative-care-
for-children-3rd-edition-richard-hain/

Reference Range Values for Pediatric Care Lamia Soghier

https://ebookmeta.com/product/reference-range-values-for-
pediatric-care-lamia-soghier/

Pediatric Primary Care 6th Edition Catherine E. Burns

(Editor)

https://ebookmeta.com/product/pediatric-primary-care-6th-edition-
catherine-e-burns-editor/

Fuhrman & Zimmerman’s Pediatric Critical Care Jerry

Zimmerman

https://ebookmeta.com/product/fuhrman-zimmermans-pediatric-
critical-care-jerry-zimmerman/

Advanced Practice Palliative Nursing 2nd Edition

Constance Dahlin

https://ebookmeta.com/product/advanced-practice-palliative-
nursing-2nd-edition-constance-dahlin-2/
INTERDISCIPLINARY PEDIATRIC PALLIATIVE CARE
INTERDISCIPLINARY PEDIATRIC
PALLIATIVE CARE

EDITED BY

Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes

Oxford University Press is a department of the University of Oxford. It furthers the
University’s objective of excellence in research, scholarship, and education by publishing
worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and
certain other countries.
Published in the United States of America by Oxford University Press
198 Madison Avenue, New York, NY 10016, United States of America.
© Oxford University Press 2022
All rights reserved. No part of this publication may be reproduced, stored in a retrieval
system, or transmitted, in any form or by any means, without the prior permission in
writing of Oxford University Press, or as expressly permitted by law, by license, or under
terms agreed with the appropriate reproduction rights organization. Inquiries concerning
reproduction outside the scope of the above should be sent to the Rights Department,
Oxford University Press, at the address above.
You must not circulate this work in any other form and you must impose this same
condition on any acquirer.
Library of Congress Cataloging-in-Publication Data
Names: Wolfe, Joanne, editor. | Hinds, Pamela S., editor. |
Sourkes, Barbara M., editor.
Title: Interdisciplinary pediatric palliative care / [edited by] Joanne
Wolfe, Pamela S. Hinds, Barbara M. Sourkes.
Other titles: Textbook of interdisciplinary pediatric palliative care
Description: 2. | New York, NY : Oxford University Press, [2022] |
Preceded by Textbook of interdisciplinary pediatric palliative care / [edited by]
Joanne Wolfe, Pamela S. Hinds, Barbara M. Sourkes. 2011. |
Includes bibliographical references and index.
Identifiers: LCCN 2021027440 (print) | LCCN 2021027441 (ebook) |
ISBN 9780190090012 (hardback) | ISBN 9780190090036 (epub) |
ISBN 9780190090043 (online)
Subjects: MESH: Palliative Care | Child | Patient Care Team |
Professional-Patient Relations | Professional-Family Relations |
Terminal Care | Infant | Adolescent
Classification: LCC RJ249 (print) | LCC RJ249 (ebook) | NLM WS 220 |
DDC 618.92/0029—dc23
LC record available at https://lccn.loc.gov/2021027440
LC ebook record available at https://lccn.loc.gov/2021027441
DOI: 10.1093/med/9780190090012.001.0001
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 regularly. Readers must therefore always check the
product information and clinical procedures with the most up-to-date published product
information and data sheets provided by the manufacturers and the most recent codes of
conduct and safety regulation. The publisher and the authors make no representations or
warranties to readers, express or implied, as to the accuracy or completeness of this
material. Without limiting the foregoing, the publisher and the authors make no
representations or warranties as to the accuracy or efficacy of the drug dosages mentioned
in the material. The authors and the publisher do not accept, and expressly disclaim, any
responsibility for any liability, loss, or risk that may be claimed or incurred as a consequence
of the use and/ or application of any of the contents of this material.
 To Drs. David Nathan, Sam Lux, and Ed Benz, long-time
sponsors and allies, for supporting pediatric palliative care
and innovation that has transformed from afterthought to
essential forethought in the care of seriously ill children and
their families,
and
As always, to Sam, Hannah, Ben, and Michael with love.
Joanne Wolfe

To every child who has suffered and to every child’s family

that has observed that suffering, and to my husband,
children, and grandchildren who have shared my caring
about ill children.
Pamela S. Hinds
In memory of my parents, teachers of the heart, and for
Talia Jade my shining heart.
Barbara M. Sourkes

And to the colleagues from whom we have learned and the

children and families for whom we have had the privilege to
care.
 CONTENTS

Foreword
Preface
About the Artist
Contributors

SECTION I SETTING THE STAGE

1 The Language of Pediatric Palliative Care

Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes
2 The New and Changing Landscape of Children Receiving Pediatric
Palliative Care in the US: An Evidence Base Emerges
Bryan Sisk, Kimberley Widger, and Chris Feudtner
3 Children’s Voices: The Experience of Patients and Their Siblings
Anna C. Muriel, Abby R. Rosenberg, and Barbara M. Sourkes
4 Settings of Care
Moshe Cohn, Emily Johnston, and Julia McBee
5 Cultural Humility, Social Determinants, and Disparities in Pediatric
Palliative Care
Danielle Jonas, Alexis Morvant, and Sara Munoz-Blanco
6 Program Development
Tammy I. Kang, Daniel P. Mahoney, Meaghann S. Weaver, and
Stacy S. Remke
7 Interdisciplinary Education and Training
Katharine E. Brock, Jennifer Hwang, Marsha Joselow, Blyth Lord,
Janet Duncan, and Deborah A. Lafond
 8 Quality in Pediatric Palliative Care
Conrad Williams IV, Amanda L. Thompson, and Kathie Kobler

SECTION II RELATIONSHIPS AND COMMUNICATION

9 Relationships with Children and Ensuring Their Voices in

Decision-Making
Karen Ron-Li Liaw, Becky Lois, Julia McBee, and Erin Collins
10 Family Experience and Relationships
Kim Mooney-Doyle, Meghan L. Marsac, Elissa G. Miller, Janet A.
Deatrick, and Melissa A. Alderfer
11 Team Relationships
Michelle R. Brown, Jody Chrastek, and Kris Catrine
12 Witness to Suffering: The Clinician Experience
Barbara M. Sourkes, Stephen Liben, and Danai Papadatou
13 Practical Aspects of Palliative Care Communication
Lindsay Ragsdale, Tessie October, and Caitlin Scanlon
14 Advance Care Planning Along the Care Continuum
Jonathan Mullin, Rachael Burgess, and Justin Baker
15 Anticipatory Grief and Bereavement
Jennifer M. Snaman, Terrah Foster Akard, Sue E. Morris, and Lori
Wiener
16 Resolving Conflicts in Pediatric Palliative Care
Robert Macauley, Jody Chrastek, Amie Brandtjen, Harvey Cohen,
and Thaddeus M. Pope

SECTION III EASING SUFFERING

17 Psychological Symptoms
Chase Samsel, Kathleen Perko, Lori Wiener, and Maryland Pao
18 Existential Suffering and Distress
Elisha Waldman and Mark Bartel
19 Neurological Symptoms
Shih-Ning Liaw, Jenna E. Freitas, and Julie Hauer
20 Pediatric Delirium in the Palliative Care Setting
Paula Tran, Jeffrey Moss, Eunice Koh, Katherine Ort, Richard J.
Shaw, and Michelle Goldsmith
21 Fatigue
Christina Ullrich, Shana Jacobs, and Pamela S. Hinds
22 Sleep and Circadian Rhythms
Toluwalase A. Ajayi, Eric S. Zhou, and Valerie E. Rogers
23 Prevention and Treatment of Pain in Children with Serious Illness
Stefan J. Friedrichsdorf, Lauren Heathcote, Michael Sangster,
Donna Eull, and Amber Borucki
24 Respiratory Symptoms
Rose Sharpe, Megan Jordan, Raymond Barfield, Sarah Gall,
Margarita Bidegain, Kristen Lakis, Renee Bartle, and Emily Layok
25 Gastrointestinal Symptoms
Kevin Madden and Margaret M. Mahon
26 Dermatologic Conditions and Symptom Control
Kimberly A. Bower, Julie Good, Anke Reineke, Cristina Gordon,
and Michele R. Burdette-Taylor
27 Easing Distress When Death Is Near
Debra Lotstein and Rachel Rusch
Section IV Illness and Treatment Experience
28 Prenatal and Neonatal Palliative Care
Christy Cummings, Anne Sullivan, Lauren Cramer, and Renee
Boss
29 Children with Complex Chronic Conditions
Jori Bogetz, Christopher A. Collura, and Christy Torkildson
30 Advanced Heart Disease
Melissa K. Cousino, Chelsea Heneghan, and Elizabeth D. Blume
31 Cystic Fibrosis and Other Childhood Lung Diseases
 Elisabeth Potts Dellon, Jessica Goggin, and Elliot Rabinowitz
32 Solid Organ Transplant
Timothy Klouda, Debra Boyer, Lynne Helfand, Michael McCown,
Nicholas Purol, and Dawn Freiberger
33 Oncological Illnesses
Sarah McCarthy, Kimberly A. Pyke-Grimm, and Angela M. Feraco
34 Hematologic Symptoms
Barbara Speller-Brown, Jillian Campbell, Allistair Abraham, Priyal
Patel, Lisa Humphrey, and Jennifer Webb
35 Primary and Acquired Immune Deficiency Disorders
Wei Li Adeline Koay, Natella Rakhmanina, Megan Wilkins, Sarah
Matthews, and Ami Doshi

Index
 FOREWORD

“We have such a long way to go,” said the boy. “Yes, but look how far we
have come,” sighed the horse.
Charlie Mackesy (The Boy, the Mole, the Fox, and the Horse)

Over the past 25 years the field of pediatric palliative care has grown
exponentially from its early beginnings in the children’s hospice
movement to its current status as a pediatric specialty and the
professionalization of team members’ respective disciplines in
palliative care. In 1998, the World Health Organization first
published its guideline on “Cancer Pain Relief and Palliative Care in
Children,” setting a public health framework for a global call to action
to provide palliative care to children with life-threatening illnesses
and their families. In 2001, in the United States, the Institute of
Medicine (now the National Academy of Medicine) published its
seminal report entitled “When Children Die.” This groundbreaking
review of the care of dying children in the United States concluded
that care was neither competent nor compassionate, identified a
host of barriers, and offered a series of wide-ranging
recommendations to address this serious public health need. In
2011, the first edition of this textbook was published, offering an
interdisciplinary evidenced-based compilation of the growing
knowledge base in this nascent field with an expansive perspective
on what constitutes the field of pediatric palliative care. In the
ensuing years, numerous national and international policies have
supported the integration of pediatric palliative care into healthcare
systems, with the World Health Organization’s Resolution in 2014
calling it “an ethical responsibility of its member states.”
Now, in 2021, this second edition demonstrates how the research
expertise, clinical practice, educational efforts, and policy reform
have evolved to assure that humane, competent, and compassionate
care to children with serious illness and their families is possible.
This publication comes at a time when the International Children’s
Palliative Care Network estimates that up to 21.5 million children
worldwide are in need of a palliative care approach and up to 8
million require specialty palliative care, with the majority who require
care living in low- and middle-income countries. The need for wide
dissemination of this textbook as an educational resource is
compelling.
For the reader, the text’s format models the concept of
interdisciplinary team care, with each of the editors being
internationally recognized clinician educators, researchers, and
champions in pediatrics, nursing, and psychology. All of the chapters
are team-authored and showcase the growing range and depth of
expertise and scholarship in the fields of pediatrics, psychology,
social work, rehabilitation, chaplaincy, and child life. With a
thoughtful and intentional approach to using poetry, art, clinical
vignettes, and reflections, the authors demonstrate the art and
science of providing physical, psychological, and spiritual care to the
seriously ill child and family.
The book is divided into four sections that frame the critical
thinking and domains of care in pediatric palliative care, setting the
stage for individual chapters that discuss a range of essential topics
including age-appropriate communication methods, shared decision-
making, ethical challenges, family dynamics, experienced ways to
navigate “a careful dance” with the other pediatric experts caring for
the child and family, symptom control, the importance of healthcare
provider’s introspection and self-care, and much more. In multiple
chapters, the authors identify the need for more research in, for
example, symptom assessment and control, new technologies and
better payment methods to further the evidence base for
standardized protocols, treatment guidelines, and economic data
that are essential aspects to assuring full integration into healthcare
systems.
This unique format and scope allows learners to become
educated in the basics of best practices in pediatric palliative care
while serving as a compendium of referenced educational materials
for those engaged in providing, teaching, or learning specialty
palliative care. For each of the disciplines reading this book, the text
is a combination of the basic skills that needs to be mastered and
the advanced knowledge the specialist in pediatric palliative care
needs to know.
This new comprehensive second edition is an up-to-date
reference and guide capturing the complexity and challenges that
healthcare providers face in caring for children with serious illness,
some of whom will die. It shows a way forward while emphasizing
an important principle: every encounter offers the clinician “the
opportunity for a sense of connection and meaning.”
Caring for these sick children and their families is a privilege and
a responsibility. Access to pediatric palliative care is a human right
imbedded in the right to health and in the right to freedom from
cruel, inhumane, and degrading treatment. Fostering
interdisciplinary care and arming new pediatric teams with the
knowledge and experience presented in this textbook furthers the
call to action to make palliative care a reality for all children in need.
Kathleen M. Foley, MD
Memorial Sloan Kettering Cancer Center
Member Emeritus
Weill Cornell Medical College Professor Emeritus,
Department of Neurology
Holding the Moment by Evelyn Berde, (2007)
 PREFACE

The field of palliative care is based on the fundamental principle that

an interdisciplinary team is optimal in the care of seriously ill patients
and their families throughout the illness trajectory. The Textbook of
Interdisciplinary Pediatric Palliative Care (TIPPC) (2011) was the first
of its kind to be written by and for interdisciplinary clinicians (rather
than by or for a single target discipline) caring for children and
adolescents with serious illness, their families, and their healthcare
providers. The editors come from medicine (Wolfe), nursing (Hinds),
and psychology (Sourkes).
Since TIPPC was first published in 2011, the field of pediatric
palliative care has developed at an astonishing rate. No longer is
there a need to focus on its basic foundation and assumptions;
rather, innovative initiatives in clinical care, research, and education
are emerging from a spectrum of disciplines. The editors have thus
led the production of this tenth anniversary edition to reflect these
developments—the progress, the obstacles, and the dilemmas.
Similar to the first edition, a crosscutting feature of this text is
consistency of language. Most palliative care publications lack
uniformity of language. The highest quality of communication is
required for all interdisciplinary palliative care team members to
deliver effective palliative care, yet communication expertise is often
lacking. Basic words such as “palliative care,” “end-of-life care,” and
“terminal care” are often used interchangeably, yet they convey very
different meanings to clinicians, patients, and families and can lead
to unintentional harmful consequences. As stated by Dr. Eric Cassell,
“Similar to scalpels for surgeons, words are the palliative care
clinician’s greatest tools. Surgeons learn to use their tools with
extreme precision, because any error can be devastating. So too
should clinicians who rely on words.” A primary focus of the textbook
is to ensure consistent terminology throughout (as explicated in
Chapter 1), as a means of exemplifying this critical tenet of palliative
care.
All the chapters in this textbook are co-authored by an
interdisciplinary group. The organization and content of the textbook
purposefully encompass perspectives across and between disciplines.
Although the chapters address the specific needs and responsibilities
of individual professions, we feel that the interwoven perspectives
from many disciplines best convey the dynamism and creativity of
our field. Importantly, even in the most effective of integrative
palliative care teams there are clinical situations of role or discipline
tension. They most likely stem from diverse team members arriving
at the same care conclusion but at different times or not agreeing
with certain care considerations or priorities. This tension is of
concern to all members of interdisciplinary teams and is often
attributed to having different perspectives about the care situation.
Part of the focus of our text is on acknowledging those periods of
tension that are of concern to all members and using them
ultimately to benefit patient and family care outcomes.
One final enhancement is based on the premise that pediatric
palliative care is delivered in partnership with families, and each
chapter includes a box highlighting a family perspective.
We will be honored and pleased if this second edition of
Interdisciplinary Pediatric Palliative Care proves valuable to trainees
and new and experienced clinicians who practice in multiple settings.
Our overriding hope is that the volume adds meaning for all
clinicians in their experience of providing pediatric palliative care. We
thank all of our authors and our publishers, Marta Moldvai and
Tiffany Lu, who have been great partners in developing this text. We
are grateful to Evelyn Berde for allowing us to reprint three pieces of
her vivid artwork on the cover and the frontispiece pages. Finally, we
thank Dr. Kathleen Foley for her unwavering advocacy for pediatric
palliative care and for her insightful foreword.

Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes

The Four Seasons by Evelyn Berde, (2008)
 ABOUT THE ARTIST

Evelyn Berde grew up in the old “West End” of Boston, a

neighborhood of European, African-American, and Latin immigrants.
Today, many of her images and colors reflect her passion for Native
American, Southeast Asian, Latin American, and African art, but also,
her paintings still somehow recall for her the world she lived in as a
child in the West End. Evelyn brings much of her life experiences to
each painting. Her work resembles the patchwork of her childhood
and adult life, as an artist, mother, wife, and teacher. Evelyn
incorporates her connection to people and their “stories,” her
surroundings in everyday life, inspirations, and dreams. Evelyn’s
artwork has been commissioned by Children’s Hospital Boston for
the Anesthesia Department Library, the Children’s Hospital Chapel,
and the patient family house at 241 Kent Street. In creating these
works, Evelyn notes, “I try to talk with many patients, parents, and
staff members before I create a piece of art. The colors, lights,
textures, and lines of each painting hopefully reflect the thoughts
and feelings of each person I have met.”
 CONTRIBUTORS

Allistair Abraham, MD
Assistant Professor of Pediatrics
Division of Blood and Marrow Transplantation
George Washington University School of Medicine and Health
Sciences, Children’s National Hospital
Washington, DC, USA

Toluwalase A. Ajayi, MD
Medical Director of Palliative Medicine
Scripps Mercy Hospital San Diego
San Diego, CA, USA
Assistant Clinical Professor
Department of Pediatrics
University of California San Diego and Staff Researcher, Scripps
Research Translational Institute
San Diego, CA, USA

Terrah Foster Akard, PhD, RN, CPNP, FAAN

Director, PhD Nursing Science Program
School of Nursing
Vanderbilt University
Nashville, TN, USA

Melissa A. Alderfer, PhD

Center Director (Delaware Valley) & Principal Research Scientist
Center for Healthcare Delivery Science
Nemours Children’s Health System
Wilmington, DE, USA
Justin Baker, MD, FAAHPM
Chief
Division of Quality of Life and Palliative Care
Full Member
Department of Oncology
Memphis, TN, USA

Raymond Barfield, MD, PhD

Palliative Medicine Specialist
Director of Palliative Care
Memorial Health University Hospital
Savannah, GA, USA

Mark Bartel, MDiv, BCC

Manager
Spiritual Care
Orlando Health Arnold Palmer Hospital for Children
Orlando Health Winnie Palmer Hospital for Women & Babies
Orlando, FL, USA

Renee Bartle, BS, RRT, RCP

Respiratory Therapist
Duke University Health System
Durham, NC, USA

Margarita Bidegain, MD, MHS-CL

Professor of Pediatrics
Division of Neonatology
Duke University Medical Center
Durham, NC, USA

Elizabeth D. Blume, MD
Associate Professor
Director
Advanced Cardiac Therapies
Boston Children’s Hospital
Boston, MA, USA

Jori Bogetz, MD
Acting Assistant Professor of Pediatrics
Division of Bioethics and Palliative Care
Department of Pediatrics
University of Washington School of Medicine
Seattle Children’s Hospital and Research Institute
Seattle, WA, USA

Amber Borucki, MD
Anesthesiologist
Center of Pain, Palliative and Integrative Medicine
Benioff Children’s Hospitals
University of California at San Francisco (UCSF)
San Francisco, CA, USA

Renee Boss, MD, MHS

Rembrandt Foundation Professor of Pediatric Palliative Care
Director, Pediatric Palliative Care
Associate Professor, Division of Neonatology
Johns Hopkins Hospital
Baltimore, MD, USA

Kimberly A. Bower, MD, FAAHPM, HMDC

Attending Physician
Rady Children’s Hospital San Diego
San Diego, CA, USA

Debra Boyer
Associate Professor of Pediatrics
Harvard Medical School
Associate Medical Director, Lung Transplant Program
Boston Children’s Hospital
Boston, MA, USA

Amie Brandtjen, MSW, LICSW

Hospice Social Worker
Fairview Home Care and Hospice
Minneapolis, MN, USA

Katharine E. Brock, MD, MS

Assistant Professor
Department of Pediatrics
Director, Supportive Care Clinic at the Aflac Cancer and Blood
Disorders Center
Emory University, Children’s Healthcare of Atlanta
Atlanta, GA, USA

Michelle R. Brown, PhD

Clinical Professor of Psychiatry
Stanford University School of Medicine
Stanford, CA, USA

Michele R. Burdette-Taylor, PhD, MSN, RN, CWCN, CFCN,

NPD-BC
Associate Professor
College of Health
University of Alaska Anchorage
Anchorage, AK, USA

Rachael Burgess, CPNP-AC

Pediatric Palliative Care Nurse Practitioner
Maine Medical Center
Portland, ME, USA

Jillian Campbell, MS, RN, CPNP-PC

Advanced Practice Nurse Practitioner
Sickle Cell Program, Center for Cancer and Blood Disorders
Division of Pediatric Hematology, Children’s National Hospital
Washington, DC, USA

Kris Catrine, MD
Medical Director
Department of Pain Medicine, Palliative Care and Integrative
Medicine
Children’s Minnesota
Minneapolis, MN, USA

Jody Chrastek, RN, DNP

Pediatric Advanced Complex Care Team Coordinator
Fairview Home Care and Hospice
Minneapolis, MN, USA

Harvey Cohen, MD, PhD

Professor
Department of Pediatric
Stanford University
Stanford, CA, USA

Moshe Cohn, MD, HEC-C

Assistant Professor
Pediatric Critical Care, Pediatric Advanced Care Team (PACT)
Hassenfeld Children’s Hospital at NYU Langone
New York, NY, USA

Erin Collins, MSW, LCSW

Administrative Social Work Supervisor and Bereavement Program
Coordinator
Hassenfeld Children’s Hospital at NYU Langone
New York, NY, USA

Christopher A. Collura, MD, MA

Assistant Professor of Pediatrics, Division of Neonatal Medicine
Department of Pediatric & Adolescent Medicine
Mayo Clinic College of Medicine, Mayo Clinic
Rochester, MN, USA

Melissa K. Cousino, PhD

Associate Professor
Department of Pediatrics
University of Michigan
Director of Psychosocial Services and Research
Congenital Heart Center, C. S. Mott Children’s Hospital
Ann Arbor, MI, USA

Lauren Cramer, MSW, LICSW

Clinical Social Worker
Pediatric Advanced Care Team
Boston Children’s Hospital
Boston, MA, USA

Christy Cummings, MD
Assistant Professor of Pediatrics
Division of Newborn Medicine
Boston Children’s Hospital
Boston, MA, USA

Janet A. Deatrick, PhD, FAAN

Professor Emerita of Nursing
University of Pennsylvania
Philadelphia, PA, USA

Elisabeth Potts Dellon, MD, MPH

Professor of Pediatrics
Department of Pediatrics, Division of Pulmonology
University of North Carolina School of Medicine
Chapel Hill, NC, USA

Ami Doshi, MD
Director of Inpatient Palliative Care
Department of Pediatrics
Rady Children’s Hospital-San Diego
San Diego, CA, USA

Janet Duncan, MSN, CPNP

Editor
Educational Content and Training
Courageous Parents Network
Boston, MA, USA

Donna Eull, RN, CNS, PhDc

Clinical Practice Specialist
Department of Pain Medicine, Palliative Care and Integrative
Medicine
Children’s Minnesota
Minneapolis, MN, USA

Angela M. Feraco, MD, MMSc

Attending Physician
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
Associate Program Director
Pediatric Hematology/Oncology Fellowship Program
Instructor of Pediatrics
Harvard Medical School
Boston, MA, USA

Chris Feudtner, MD, PhD, MPH

Director of Research for the Justin Michael Ingerman Center for
Palliative Care
Department of Medical Ethics
Children’s Hospital of Philadelphia
Departments of Pediatrics and Medical Ethics and Health Policy,
Perelman School of Medicine
University of Pennsylvania
Philadelphia, PA, USA

Dawn Freiberger, RN, MSN, CCTC

Lung Transplant Coordinator
Department of Pulmonary
Boston Children’s Hospital
Boston, MA, USA

Jenna E. Freitas, MSN, RN, CPNP

Pediatric Nurse Practitioner
Director
Pediatric Advanced Care Team Nurse Practitioner Fellowship
Boston Children’s Hospital
Boston, MA, USA

Stefan J. Friedrichsdorf, MD
Professor in Pediatrics
University of California at San Francisco (UCSF)
Medical Director
Center of Pain, Palliative and Integrative Medicine
Benioff Children’s Hospitals
University of California at San Francisco (UCSF)
San Francisco, CA, USA

Sarah Gall, MD
Assistant Professor of Pediatrics
Duke University Health System
Durham, NC, USA

Jessica Goggin, PhD, RN

Director, Pulmonary Services
Division of Pulmonary, Critical Care and Sleep Medicine
UC San Diego Health
La Jolla, CA, USA

Michelle Goldsmith, MD
Clinical Associate Professor of Child and Adolescent Psychiatry
Stanford University School of Medicine
Stanford, CA, USA

Julie Good, MD
Clinical Associate Professor
Stanford University School of Medicine
Department of Anesthesiology, Perioperative and Pain Medicine and
by Courtesy, Pediatrics
Stanford Children’s Health
Stanford, CA, USA

Cristina Gordon, MD
Voluntary Clinical Instructor
University of California San Diego
San Diego, CA, USA

Julie Hauer, MD, FAAHPM

Medical Director
Seven Hills Pediatric Center
Groton, MA, USA

Lauren Heathcote, PhD

Postdoctoral Researcher
Department of Anesthesiology, Perioperative, and Pain Medicine
Stanford University School of Medicine
Palo Alto, CA, USA

Lynne Helfand, MSW, LICSW, MPH

Clinical Social Worker
Lung Transplant Program
Boston Children’s Hospital
Boston, MA, USA

Chelsea Heneghan, MSN, CPNP-AC/PC, CPHON

Nurse Practitioner
Division of Pediatric Palliative Care
Boston Children’s Hospital and Dana-Farber Cancer Institute
Boston, MA, USA

Pamela S. Hinds, PhD, RN, FAAN

The William and Joanne Conway Chair in Nursing Research
Executive Director, Department of Nursing Science, Professional
Practice, and Quality Outcomes
Research Integrity Officer, Children’s National Hospital
Professor
Department of Pediatrics
The George Washington University
Washington, DC, USA

Lisa Humphrey, MD
Director of Hospice and Palliative Medicine
Nationwide Children’s Hospital
Columbus, OH, USA

Jennifer Hwang, MD, MHS, MSEd

Assistant Professor
Clinical Pediatrics
University of Pennsylvania
Director of Education, Pediatric Advanced Care Team
Children’s Hospital of Philadelphia
Philadelphia, PA, USA

Shana Jacobs, MD
Associate Professor
Children’s National Hospital
Department of Pediatrics
The George Washington University
Washington, DC, USA

Emily Johnston, MD, MS

Assistant Professor
Pediatric Hematology/Oncology
University of Alabama at Birmingham
Birmingham, AL, USA

Danielle Jonas, MSW, LCSW

PhD Student
New York University, Silver School of Social Work
New York, NY, USA

Megan Jordan, MD
Medical Director Pediatric Palliative Care
Assistant Professor of Medicine and Pediatrics
Duke University Health System
Durham, NC, USA

Marsha Joselow, LCSW

Clinical Social Worker
Pediatric Advanced Care Team
Dana-Farber Cancer Institute and Boston Children’s Hospital
Boston, MA, USA
Tammy I. Kang, MD, MSCE
Texas Children’s Hospital
Baylor College of Medicine
Houston, TX, USA

Timothy Klouda
Division of Pulmonary Medicine
Boston Children’s Hospital
Boston, MA, USA

Blyth Lord, EdM

Executive Director
Courageous Parents Network
Newton, MA, USA

Wei Li Adeline Koay, MBBS, MSc

Infectious Diseases Attending
Department of Infectious Diseases
Children’s National Hospital
Washington, DC, USA

Kathie Kobler, PhD, APRN, PCNS-BC, CHPPN, FPCN, FAAN

Coordinator
Center for Fetal Care
Advocate Children’s Hospital
Park Ridge, IL, USA

Eunice Koh, MD
Clinical Assistant Professor of Pediatric Critical Care
Stanford University School of Medicine
Stanford, CA, USA

Deborah A. Lafond, DNP, PPCNP-BC, CPON, CHPPN, FPCN,

FAAN
Clinical Director
PANDA Palliative Care Team
Children’s National Hospital
Washington, DC, USA

Kristen Lakis, MSW, LCSW, MDiv

Pediatric Palliative Care Social Worker
Duke University Health System
Durham, NC, USA

Emily Layok, MS, CCLS

Child Life Specialist
Duke University Health System
Durham, NC, USA

Shih-Ning Liaw, MD, FAAP

Program Director
Harvard Interprofessional Pediatric Palliative Care Fellowship
Boston Children’s Hospital/Dana-Farber Cancer Institute
Boston, MA, USA

Stephen Liben, MD
Director
Pediatric Palliative Care Program
Professor of Pediatrics
McGill University
Montreal Children’s Hospital
Montreal, QC, Canada

Becky Lois, PhD

Clinical Associate Professor
NYU Grossman School of Medicine Department of Child and
Adolescent Psychiatry
Pediatric Psychology Director
Integrated Behavioral Health Programs
Hassenfeld Children’s Hospital at NYU Langone
New York, NY, USA

Debra Lotstein, MD, MPH

Chief, Division of Comfort and Palliative Care
Children’s Hospital Los Angeles
Associate Professor of Clinical Pediatrics
Keck School of Medicine of the University of Southern California
Los Angeles, CA, USA

Robert Macauley, MD
Professor of Pediatrics
Cambia Health Foundation Endowed Chair in Pediatric Palliative Care
Oregon Health and Science University
Portland, OR, USA

Kevin Madden, MD
Assistant Professor
Department of Palliative Care and Rehabilitation Medicine
Division of Cancer Medicine
The University of Texas, MD Anderson Cancer Center
Houston, TX, USA

Margaret M. Mahon, PhD, CRNP, FAAN, FPCN

Pain and Palliative Care
Dermatologic Conditions and Symptom Control
National Institutes of Health
Bethesda, MD, USA

Daniel P. Mahoney, MD
Assistant Professor of Pediatrics
Texas Children’s Hospital
Baylor College of Medicine
Houston, TX, USA

Meghan L. Marsac, PhD

Associate Professor
University of Kentucky College of Medicine
Lexington, KY, USA

Sarah Matthews, MD, AAHIVS

Fellow
Hospice and Palliative Medicine
University of California San Diego
San Diego, CA, USA

Julia McBee, RN, MSN, CPNP

Pediatric Advanced Care Team (PACT) Nurse Practitioner
Hassenfeld Children’s Hospital at NYU Langone
New York, NY, USA

Sarah McCarthy, PhD, MPH, LP

Assistant Professor of Psychiatry and Psychology, Division of Child
and Adolescent Psychology
Department of Psychiatry and Psychology
Mayo Clinic College of Medicine, Mayo Clinic
Rochester, MN, USA

Michael McCown, DO
Chief, Pediatric Pulmonology
Walter Reed National Military Medical Center
Bethesda, MD, USA

Elissa G. Miller, MD
Chief, Division of Palliative Medicine
Division of Palliative Medicine
Nemours/Alfred I. DuPont Hospital for Children
Wilmington, DE, USA
Kim Mooney-Doyle, PhD, RN, CPNP-AC
Assistant Professor
University of Maryland School of Nursing
Baltimore, MD, USA

Sue E. Morris, PsyD

Senior Psychologist
Director Bereavement Services
Department of Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Assistant Professor
Harvard Medical School
Boston, MA, USA

Alexis Morvant, MA, MD, FAAP

Chief of Pediatric Palliative Care
Children’s Hospital New Orleans
Assistant Professor
Louisiana State University Health Sciences Center
New Orleans, LA, USA

Jeffrey Moss, PharmD

Clinical Specialist Pharmacist
Pediatric Intensive Care Unit
Department of Pharmacy
Lucile Packard Children’s Hospital Stanford
Palo Alto, CA, USA

Jonathan Mullin, MD
Assistant Professor of Pediatrics
Washington University School of Medicine
St. Louis, MO, USA

Sara Munoz-Blanco, MD
Assistant Professor
Neonatal-Perinatal Medicine/Pediatric Hospice and Palliative Medicine
Section of Palliative Care, Department of Internal Medicine
University of Texas Southwestern
Dallas, TX, USA

Anna C. Muriel, MD, MPH

Associate Professor of Psychiatry
Harvard Medical School
Division Chief
Pediatric Psychosocial Oncology
Department of Psychosocial Oncology and Palliative Care
Dana Farber Cancer Institute
Boston, MA, USA

Tessie October, MD, MPH

Associate Professor of Pediatrics
Department of Pediatrics, Division of Critical Care Medicine
Children’s National Hospital
Washington, DC, USA

Katherine Ort, MD
Clinical Assistant Professor of Child and Adolescent Psychiatry and
Pediatrics
NYU Grossman School of Medicine Department of Child and
Adolescent Psychiatry and Department of Pediatrics
New York, NY, USA

Maryland Pao, MD
Clinical and Deputy Scientific Director
National Institute of Mental Health Intramural Research Program
Bethesda, MD, USA

Danai Papadatou, PhD

Professor of Clinical Psychology
Faculty of Nursing National and Kapodistrian University of Athens
Athens, Greece

Priyal Patel, DO
Assistant Professor
Hospice and Palliative Medicine
Pediatric Hematology/Oncology/Blood and Marrow Transplant
Nationwide Children’s Hospital

Columbus, OH, USA

Kathleen Perko, MS, PPCNP-BC, CHPPN, CPON, CPLC, FPCN

Pediatric Palliative Care Certificate Track Director
Palliative Care Training Center
University of Washington
Seattle, WA, USA

Thaddeus M. Pope, JD, PhD

Professor of Law
Mitchell Hamline School of Law
St. Paul, MN, USA

Nicholas Purol, MSW

Social Worker
Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute and Boston Children’s Hospital
Boston, MA, USA

Kimberly A. Pyke-Grimm, PhD, RN, CNS, CPHON

Nurse Scientist
Department of Nursing Research and Evidence-Based Practice
Clinical Assistant Professor, Division of Hematology/Oncology
Department of Pediatrics
Lucile Packard Children’s Hospital Stanford
Palo Alto, CA, USA

Elliot Rabinowitz, MD
Division of Pulmonary Medicine
Department of Psychosocial Oncology and Palliative Care
Boston Children’s Hospital and Dana-Farber Cancer Institute
Instructor of Pediatrics
Harvard Medical School
Boston, MA, USA

Lindsay Ragsdale, MD, FAAP, FAAHPM

Chief, Division of Pediatric Palliative Care
Kentucky Children’s Hospital
Associate Professor of Pediatrics
University of Kentucky
Lexington, KY, USA

Natella Rakhmanina, MD, PhD

Director of HIV Services and Special Immunology
Children’s National Hospital
Washington, DC, USA

Anke Reineke, PhD, BCIAC

Pschologist
CSH Inpatient Pain Program
Rady Children’s Hospital San Diego
San Diego, CA, USA

Stacy S. Remke, MSW, LICSW

Senior Teaching Specialist
Division of Pain and Palliative Care and Social Work
Minneapolis, MN, USA

Valerie E. Rogers, PhD, RN, CPNP

Retired
University of Maryland School of Nursing
Baltimore, MD, USA

Karen Ron-Li Liaw, MD

Clinical Associate Professor
NYU Grossman School of Medicine Department of Child and
Adolescent Psychiatry
Service Chief
Hassenfeld Children’s Hospital at NYU Langone
New York, NY, USA

Abby R. Rosenberg, MD, MS, MA

Associate Professor
Department of Pediatrics
University of Washington School of Medicine
Seattle, WA, USA

Rachel Rusch, LCSW, MSW, MA

Clinical Social Worker
Division of Comfort and Palliative Care
Children’s Hospital Los Angeles
Los Angeles, CA, USA

Chase Samsel, MD
Assistant Professor of Psychiatry
Harvard Medical School
Medical Director
Psychiatry Consultation Service
Department of Psychiatry and Behavioral Sciences
Attending Psychiatrist
Pediatric Transplant Center
Boston Children’s Hospital
Department of Psychiatry and Behavioral Sciences
Boston Children’s Hospital
Boston, MA, USA

Michael Sangster, BScPT, MBA, DPT

Physiotherapist
Clinical Specialist (Pain Science)/Clinical Associate
IWK Health Centre/Dalhousie University
Halifax, NS, Canada

Caitlin Scanlon, MSW, LCSW

Clinical Social Worker
Pediatric Palliative Care Team
Riley Hospital for Children
Indiana University Health
Indianapolis, IN, USA

Rose Sharpe, MSN, CPNP

Nurse Practioner
Pediatric Palliative Care NP
Duke University Health System
Durham, NC, USA

Richard J. Shaw, MD
Professor of Child and Adolescent Psychiatry and Pediatrics
Stanford University School of Medicine
Stanford, CA, USA

Bryan Sisk, MD, MSCI

Assistant Professor
Department of Pediatrics, Division of Hematology and Oncology
Department of Medicine, Bioethics Research Center
Washington University School of Medicine in St. Louis
St. Louis, MO, USA

Jennifer M. Snaman, MD, MS

Assistant Professor
Dana-Farber Cancer Institute
Department of Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Department of Pediatric Oncology
Boston, MA, USA

Barbara M. Sourkes, PhD

Professor
Department of Pediatrics
Stanford University School of Medicine
Stanford, CA, USA

Barbara Speller-Brown, DNP, CPNP, MSN

Assistant Professor of Pediatrics
Division of Pediatric Hematology
George Washington University School of Medicine and Health
Sciences
Lead Sickle Cell Translational Research APN
Director SCD Transition Clinic
Children’s National Hospital
Washington, DC, USA

Anne Sullivan, MD
Instructor in Pediatrics
Attending Neonatologist
Division of Newborn Medicine
Boston Children’s Hospital
Boston, MA, USA

Amanda L. Thompson, PhD

Chief, Pediatric Psychology
Life with Cancer
INOVA Schar Cancer Institute
INOVA Health System
Fairfax, VA, USA

Christy Torkildson, PhD, RN, PHN, FPCN, PACT

Team Coordinator
Complex Pain and Palliative Care
UCSF Benioff Children’s Hospital Oakland
Senior Clinical Practice Consultant
Hospice and Palliative Care, Banner Health
Gilbert, AZ, USA

Paula Tran, MD
Clinical Assistant Professor of Child and Adolescent Psychiatry
Stanford University School of Medicine
Stanford, CA, USA
Christina Ullrich, MD, MPH
Assistant Professor
Harvard Medical School
Clinical Director
Pediatric Advanced Care Team
Senior Physician
Psychosocial Oncology and Palliative Care
Pediatric Hematology/Oncology
Dana-Farber Cancer Institute and Boston Children’s Hospital
Boston, MA, USA

Elisha Waldman, MD, FAAHPM

Chief, Division of Palliative Care
Ann & Robert H. Lurie Children’s Hospital of Chicago
Associate Professor of Pediatrics
Northwestern University Feinberg School of Medicine
Chicago, IL, USA

Meaghann S. Weaver, MD, MPH, FAAP

Adjunct Associate Professor
Department of Palliative Care
University of Nebraska Medical Center
Omaha, NE, USA

Jennifer Webb, MD, MSCE

Assistant Professor of Pediatrics
Division of Pediatric Hematology
George Washington University
School of Medicine and Health Sciences
Children’s National Hospital
Washington, DC, USA

Kimberley Widger, RN, PhD, CHPCN(C)

Associate Professor
Lawrence S. Bloomberg Faculty of Nursing
University of Toronto
Toronto, ON, Canada

Lori Wiener, PhD

Co-Director, Behavioral Health Core
Director, Psychosocial Support and Research Program Pediatric
Oncology Branch Center for Cancer Research, National Cancer
Institute
National Institutes of Health
Bethesda, MD, USA

Megan Wilkins, PhD

Associate Member
Divisions of Infectious Diseases and Psychology
St. Jude Children’s Research Hospital
Memphis, TN, USA

Conrad Williams IV, MD, FAAP, FAAHPM, HMDC

Assistant Professor of Pediatrics
Medical University of South Carolina
Medical Director
Palliative Care Program
MUSC Children’s Health System
Charleston, SC, USA

Joanne Wolfe, MD, MPH

Attending Physician, Pediatric Advanced Care Team
Dana-Farber Cancer Institute and Boston Children’s Hospital
Professor of Pediatrics
Harvard Medical School
Boston, MA, USA

Eric S. Zhou, PhD

Assistant Professor
Staff Psychologist
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
Boston, MA, USA
 SECTION I SETTING THE STAGE

Children are born with rainbows in their hearts and you’ll never reach them
unless you reckon with rainbows.
CARL SANDBURG

We hope that the lives of all children will be filled with possibility,
with open horizons and rainbows into the future. Children with
serious illnesses, their families, and those who care for them
confront the realization that “not everything is possible,” that,
despite dramatic scientific and medical advances, the life spans of
some children will be shortened. This threat of premature loss
heightens the sense of time for children and families alike and
challenges clinicians to create new pathways of hope for them.
The interdisciplinary field of pediatric palliative care has emerged
over the past three decades, with rapid development in clinical care,
education, research, and policy. In this section, “Setting the Stage,”
themes, constructs, and emerging evidence that are foundational to
the spectrum of pediatric palliative care provide a conceptual
framework for this book and this field.
Words define, clarify, and communicate experience; their potential
impact is powerful in both positive and negative ways. The
importance of a common language cannot be underestimated when
clinicians from many disciplines care for children and families who
face extraordinary challenges. The opening chapter, “The Language
of Pediatric Palliative Care” sets this foundation.
Who are these children? Who are the parents and families who
care for them? Chapter 2 on the epidemiology of pediatric palliative
care portrays the distribution of conditions, their trajectories and
symptoms, and trends in mortality. The chapter also contains a
declaration that pediatric palliative care is a firmly established field.
Families are discussed regarding their structure, the “work of care”
for the child, coping, and financial issues. Overarching both the child
and family variables are epidemiological factors in healthcare
systems at regional, national, and international levels.
In Chapter 3, “Children’s Voices,” children and their siblings
provide another type of portrait: through their own words and
images they convey their experience of living with illness: their
awareness of its life-threatening nature, the undercurrent of
anticipatory grief, and their role in decision-making. These
experiences are a perfect prelude to the very next chapter, Chapter
4, which is on settings of care. This is because the settings are now
wherever a child needs palliative care. The nature of this care has
broadened and so, too, have the number of settings.
Chapter 5, social considerations and disparities, directly addresses
how the culture that creates disparities in healthcare in general can
also create disparities in pediatric palliative care. Cultural humility is
defined and described as a way of giving palliative care that
welcomes how individuals (children, families, care providers) can
discover how they are both different from each other and the same.
These discoveries guide best-fit palliative care for the ill child, family,
and care situation.
Pediatric palliative care programs have expanded, and this
unfolding of programs is described in Chapter 6, which shows their
growth and networking connections in a non-linear manner.
Programs are now characterized by links beyond hospital settings to
communities. Being informed by business plans has become a
necessity. Relatedly, Chapter 7 frames education and training as
benefitting from interdisciplinary approaches that span settings and
consider the skills of each learner and the knowledge gaps of each
as well. The knowledge and learning of an individual can translate
through planned actions to interdisciplinary team knowing.
“Setting the Stage” closes with Chapter 8, on quality in pediatric
palliative care and defines quality care as being based on knowing
the goals of all involved—the child, family, and care professionals.
Care based on goal awareness of all involved yields safe, effective,
patient-centered, timely, efficient, and equitable care. Providing that
kind of pediatric palliative care will help pediatric palliative care
providers from diverse disciplines to “reckon with rainbows” of all ill
children.
 1 THE LANGUAGE OF PEDIATRIC PALLIATIVE
CARE
JOANNE WOLFE, PAMELA S. HINDS, AND BARBARA M. SOURKES

The Word
Oh, a word is a gem, or a stone, or a song,
Or a flame, or a two-edged sword;
Or a rose in bloom, or a sweet perfume,
Or a drop of gall is a word.

You may choose your word like a connoisseur,

And polish it up with art,
But the word that sways, and stirs, and stays,
Is the word that comes from the heart.

You may work on your word a thousand weeks,

But it will not glow like one
That all unsought, leaps forth white hot,
When the fountains of feeling run.
ELLA WHEELER WILCOX

Words are, in my not-so-humble opinion, our most inexhaustible source of

magic. Capable of both inflicting injury, and remedying it.
J. K. ROWLING (HARRY POTTER AND THE DEATHLY HALLOWS)

INTRODUCTION

Basic words such as “palliative care,” “end-of-life care,” and “terminal

care” are often used interchangeably yet they convey very different
meanings to clinicians, patients, and families and can lead to
unintentional and harmful consequences. As stated by Dr. Eric
Cassell, “Similar to scalpels for surgeons, words are the palliative
care clinician’s greatest tools. Surgeons learn to use their tools with
extreme precision, because any error can be devastating. So too
Another random document with
no related content on Scribd:
catching something. She climbed up fairly high and then let herself
drop with all her legs stretched out, spinning all the time the thread
by which she was hanging. Then she climbed up it, spinning another
thread, and when she had like this spun some nice strong sticky
threads she waited for the wind to carry them on to some branches
of furze. When these held, Emma ran along them, fastened them
firmly and spun a fresh thread each time till she made a line that was
strong and elastic, and so not likely to break easily. When she was
satisfied it would bear the weight of the web, she spun struts from it
to hold it firm and then began the web itself. She first made a kind of
outline and then spun and worked towards the middle. It was
wonderful to see what a beautiful regular pattern she was spinning,
with nothing but her instinct to guide her.
You know when a house is being built it has tall poles all round it
called scaffolding, which helps the building; well, the first outline of
the web was Emma’s scaffolding, and when it was no longer wanted
she got rid of it by eating it up!
“But how did Emma spin a thread?” I can hear you asking.
It is like this—suppose you had a ball of silk in your pocket and ran
about twisting it round trees to make a big net. This is really what the
spider does, but the silk comes from inside her and will never come
to an end like the ball in your pocket. It issues from what are called
spinnerets. When she lets herself drop, the spinnerets regulate the
thread, but when she is running along spinning she uses two of her
back legs to pay it out, just as you would have to use your hands to
pull the silk out of your pocket. It is a pity spiders usually spin their
webs at night, so that we seldom get a chance of watching them.
I said just now that Emma’s silk never comes to an end, but
sometimes if a very big fly or wasp gets caught in her net she has to
use a great deal of her silk, which she winds round and round the fly,
binding him hand and foot, and then her stock of thread which is
carried inside her may run low; but it soon comes again, especially if
she gets a good meal and a nice long rest.
 A fly struggling in her web.

When Emma had finished she was pleased with the look of her
web and hid herself at the side of it under a furze branch. She
watched and waited. She waited all night long and nothing
happened.

CHAPTER III
A NARROW ESCAPE

In the morning she was still watching and waiting, but at last there
was a sound. A deep humming was heard in the air as if a fairy
aeroplane were passing. It was so loud that even deaf Emma might
have heard it if she had not been too busy. Just then, however, her
hairs had received a wireless message to say there was a catch at
the far end of her web. Although a spider is much more patient than
you, and can sit still a long time, it is a quick mover when there is
need for speed. Emma darted out like a flash of lightning and found
a fly struggling in her web. It was a very small thin one, and poor
hungry Emma was disappointed not to see a larger joint for her
larder. She quickly settled it, however, and spun some web round it
to wrap it up, for, after all, it was something to eat and so worth
taking care of. She was still busy with her parcel when “Buzz, buzz,
buzz,” the whole web gave a big jump and there quite close to
Emma was a huge, terrible beast. A great angry yellow wasp,
making frightful growling noises and struggling desperately to get out
of the web. Poor Emma wasn’t very old or daring and she knew the
danger she was in, for this savage monster could kill her easily with
his sting. He was fighting hard against the sticky meshes of the web
and jerking himself nearer to her. She was too frightened to move,
and for a minute she hung on to her web limp and motionless looking
like a poor little dead spider. Then something happened. The wind
blew a little puff, the wasp put out all his strength and gave a twist,
the web already torn broke into a big hole and the great yellow beast
was free. He glared at Emma and hovered over her, buzzing
furiously. He would have liked to kill her, but luckily he was too afraid
of getting tangled up again in that sticky, clinging web, so, grumbling
loudly, he flew away.
“What did Emma do?”
Well, she quickly got over her fright and I think she had a little
lunch off her lean fly; then she looked at her web and was sorry to
see it so torn and spoilt. The best thing to do was to mend it then
and there, and as a spider always has more silk in her pocket, so to
speak, she was able to do it at once. She repaired it so well that it
didn’t look a bit as if it had been patched but just as if the new piece
had always been there, the pattern was just as perfect.

CHAPTER IV
ABOUT WEBS
 I don’t believe you are feeling a bit afraid of spiders now, are you?
There is no reason why we should fear them, for they don’t bite or
sting us; and if they did the poison that paralyses and kills their prey
would not hurt us. Besides, they kill the insects that harm us. I saw a
spider’s web once full of mosquitoes, and you know what worrying
little pests they are. I was glad to see so many caught, but sorry for
the spider, as they didn’t look a very substantial meal. Then you
know how dangerous flies have been found to be, making people ill
by poisoning their food, so it is a good thing that spiders help us to
get rid of them.
Another reason to like spiders is for their webs. There is no animal
or insect that makes anything quite so wonderful and beautiful as
what these little creatures spin.
The spider’s web is really a snare for catching her food. The
strands of it are so fine as often to be invisible in some lights even in
the daytime, and of course quite invisible at night. Sometimes the
beetle or flying insect is so strong that he can tear the web and get
free, but not often, for the spider can do wonders with her thread.
She spins ropes and throws them at her big prey and doesn’t go
near it till it is bound and helpless.
Of course, there are many different kinds of spiders who spin
different kinds of webs. In a hotter country than this there is one that
is as big or rather bigger than your hand, and another called the
Tarantula whose bite is supposed to be so poisonous that it can kill
people, but this is very exaggerated.
 A Beautiful Web.

As the spider’s web is only her snare, she naturally has to have
some kind of home, which must be quite near to her place of
business. If you look very close and follow one of the strands of the
web you will find some little dark cranny where the huntress can
hide. If the web is amongst trees it will probably be a leaf she has
pulled together with her thread and made into a dark little tunnel out
of which she darts when something is caught.
Now before we leave the spiders’ webs you may wonder why you
never see them so clearly as they show in the photographs, and I will
tell you the reason. You see if the spiders’ nets which are set to
catch sharp-eyed insects were always to show as clearly as they do
in the pictures, I am afraid they would really starve, for no fly would
be silly enough to go into such a bright trap. But sometimes in the
autumn, very early in the morning, the dew hangs in tiny beads on
the webs, and makes them show up clearly, and then it is that the
photographs are taken. If you get up early some still September
morning, just about the same time as the sun, and go for a walk in a
wood, or even along a country road, you may see the webs with
what look like strings of the tiniest pearls on them, and you will find
that until the sun has dried up all the little wet pearls, which are of
course dewdrops, the poor spider has not a ghost of a chance of
catching anything.
But to return to the spider herself. The one you know best is
probably the house-spider. It has eight legs and a body rather the
shape of a fat egg, with a little round bead of a head. It runs up the
walls, sometimes hanging by a thread from the ceiling, and seems
very fond of the corners of the room. How glad these house-spiders
must be when they get to a dirty untidy house, where they will be
safe from the broom. Most of us hate to see cobwebs in our houses,
and get rid of them as quickly as we can.

CHAPTER V
THE LITTLE HOUSE-SPIDER

I will tell you about a little house-spider who had a very exciting
adventure. She had made a beautiful web in the corner of a
bedroom, high up near the ceiling. One day her sensitive hairs told
her there was some sort of disturbance in the room, and looking
down from her web she saw all the furniture being moved out. The
curtains and rugs had gone and the bed was pushed up into a
corner. Then, to her dismay, a huge hairy monster came rushing up
the wall. Of course, it was only a broom, but the poor little spider was
so terrified she thought it was alive. It came nearer and nearer, and
all at once there was a terrific rush and swish right up the wall where
she lived, and web and spider disappeared. It was very alarming, but
you will be glad to hear that the little spider was not killed but only
stunned; and as soon as she came to her senses, she found herself
right in the middle of the broom. She hung on and kept quite still, and
soon the servants went into the kitchen to have some lunch and the
broom was stood up against the wall.
Now was the little spider’s chance to escape, and out she popped.
The coast seemed clear, so she scuttled up the wall and rested on
the top of the door. Spiders haven’t good sight, so she couldn’t see
much of the kitchen, but what she did see looked nice, and she
thought it a much more interesting place than a bedroom, besides
there were some flies about, so she determined to spin another web.
No sooner had she begun when there was a crash like an
earthquake. “Will horrors never cease?” thought the spider. It was
really only the slamming of the door, but it so startled her that she fell
and dropped on to the shoulder of some one who had just come in.
 A Snare.

“Oh, Miss Molly!” cried cook, “you’ve got a spider on you, let me
kill it.”
“No, no,” said Molly, “that would be unlucky, besides it’s only a tiny
one,” and she took hold of the thread from which the spider hung
and put it out of doors. Wasn’t that a lucky escape? She ran up the
wall and got on to a window sill. Here she crouched down into a
corner making herself as small as she could for fear of being seen,
and then she fell asleep. You see she had gone through a great deal
that morning, and the excitement had thoroughly tired her out.
When evening came she woke up and felt very hungry, so she
quickly spun a web, and would you believe it, before it was even
finished she felt a quiver, and there was a silly little gnat caught right
in the middle. He was very tiny, but the spider wasn’t big, and he
made a very good meal for her. She didn’t stop even to wrap him up,
for she couldn’t wait, but gobbled him up on the spot.

CHAPTER VI
BABY SPIDERS

Before a spider lays her eggs, she spins some web on the ground.
She goes over it again and again, spinning all the time, till it looks
like a piece of gauze. Into this she lays her eggs—often over a
hundred—and covers them with more web and then wraps them up
into a round ball. I don’t suppose you would think it, but a spider is a
very devoted mother, and this white ball is so precious to her that
she carries it everywhere she goes and never lets it out of her sight.
She will hold it for hours in the sun to help to hatch the eggs, and
she would fight anything that tried to hurt it or take it away from her.
It is the same when the eggs are hatched out, for her babies are
always with her. Their home is on her back, and as there is such a
swarm of them, they cover her right up and you often can’t see the
spider for the young. Often some of them drop off, but they are
active little things and they soon climb on again. As long as they live
with their mother they have nothing to eat. This fasting, however,
doesn’t seem to hurt them for they are very lively; the only thing is
they don’t grow.
It doesn’t seem to matter very much even to grown-up spiders to
go without their dinners for several days. And when they do at last
get some food they gorge. They eat and eat and eat, and instead of
making themselves ill like you would do, they seem to feel very
comfortable and are able to go hungry again for some time. Perhaps
it is because, as babies, they got used to doing without food.

Spiders love fine weather.

 Spiders love fine weather, and they seem to know when to expect
the sun to shine. When it is a bright day Mother Spider brings out her
big little family. It is no good offering them any food, for they can’t eat
it yet, so she finds a sheltered hot place and gives them a thorough
sun bath, which they like better than anything else.
And now one more little story before we say “Good-by” to spiders.
When Emma was a tiny baby she had thirty-nine brothers and
sisters. And as she was just a tiny bit smaller than the others, she
was very badly treated. The stronger ones would be very rough and
cruel to her. They used to walk over her and push her near the edge
where she would be likely to fall off. Two or three times they had
crowded her so that she really had slipped off and lay sprawling on
the ground. However, she was very nimble and agile, and she had
always been able to pick herself up quickly and clamber up one of
her mother’s legs on to her back again.
One day the little spiders were more spiteful than usual. “You are a
disgrace to us,” they told Emma, “you might be a silly ant.”
“I’m no more an ant than you,” said Emma, “I can’t help being
small.”
“Ant, ant, ant!” they cried, “ants belong on the ground and that’s
your proper place,” and pushed her off on to the ground.
The unlucky part was that Emma’s mother didn’t know what had
happened, and before Emma could struggle to her feet, she had
hurried away having noticed a bird hovering near. There was Emma
all alone, a poor lost little spider without a mother or a home.
She was feeling very sad and wondering what would become of
her, when along came another Mother Spider with a lot of babies on
her back. Two of these fell off quite near to Emma, and when they
ran back to their mother she ran with them. Up an unknown leg she
climbed and on to a strange back, and yet she felt quite as happy
and at home as if it had been her own mother and the companions
she joined had been her real brothers and sisters. How different
spiders are from us! Emma’s mother never knew she had lost a
baby, and the new mother didn’t bother herself at all that she had
adopted one, and as for the strange brothers and sisters, they
treated her rather better than her own, for they happened to be just a
little smaller than Emma so were not strong enough to push her off.
As far as Emma was concerned it was decidedly a change for the
better, and she was really a very lucky little spider.
 WHAT THE CHICKENS DID

CHAPTER I
JOAN AND THE CANARIES

I wonder if you have ever watched young chickens. You can’t help
liking such babyish, fluffy little things; they are so sweet and so
different from the grown-up hens. I know a little girl who cried out,
“Look at all those canaries!” Of course, they are not really a bit like
canaries, and it was only because of their yellow coats that she
made the mistake.
Chickens are so lively and cheery, too; even when they are only a
day old they are able to feed themselves, and will run about picking
up grain. For such babies they are quite bold and will wander off a
long way from the coop, but when anything alarming comes along
they will all rush back to Mother Hen, making funny little peeping
noises showing they are rather frightened; and she answers, “Tuk,
tuk,” as much as to say, “You are little sillies, but I’m very fond of
you,” and takes them under her wing.
Joan was the little girl who had called them canaries, and you may
guess how she got teased about it. She had come to stay with an
aunt who had a farm, and as Joan had always lived in a town, she
couldn’t be expected to know very much about animals or birds. She
liked the cows and the goats and the horses but she loved the
chickens best of all. When she was missing, her aunt always knew
where to find her, and the chickens seemed to know her too and
were tamer with her than with any one else.
When anything alarming comes along they will all rush back to Mother Hen.

A little tapping sound.

 Several of the hens were sitting on their eggs, and Joan was told
she mustn’t go near them or disturb them at all. While a hen is sitting
she doesn’t want to be bothered to think of anything else except how
she can best keep her eggs warm and safe. She has to be careful
and patient till the chicks are ready to come out. This is an exciting
time, and Joan used often to think about it. She did wish so she
might see a chicken burst through its shell. She imagined there
would be a little tapping sound, and that the other chickens would be
very interested and listen, and then the shell would suddenly open
and out would spring a fluffy yellow chicken. She had been to a
pantomime once called “Aladdin,” and there had been a huge egg,
supposed to be a Roc’s egg. In the last scene this egg was in the
middle of the stage. A dancer struck it with a wand, when it opened,
and out sprang a full grown fairy, dressed in orange and gold, with a
skirt of fluffy yellow feathers. Somehow Joan had always imagined a
chicken would begin its life in this dramatic way.

CHAPTER II
THE WORM

As yet only one small family of chickens had come out of their
eggs but they were quite enough for Joan to play with. She soon
made friends with them and gave them all names. There were:
Honeypot, Darkie, Piggy, Fluffy, Cheeky, Dolly and Long-legs. Darkie
was rather different from the others; he was a lively little chick with a
dark coat and white shirt front. Cheeky was the boldest and most
impudent. He would cock his little head on one side and stare at
Joan, and he was always the last to run to Mother Hen if anything
was the matter.
 Dolly found a worm.

Cheeky dashing off with the prize.

Joan never forgot the morning Dolly found a worm. Instead of

keeping quiet, the silly chick made such a fuss over it that the others
soon found it out. Cheeky was on the spot at once, and before slow
Dolly could say a “peep” he had snatched the worm out of her beak
and was off. I wonder if you have ever seen a chicken running with a
worm; it really is great fun. Joan shouted with delight to see that
rascal of a Cheeky dashing off with the prize while poor foolish Dolly
only looked on. However, one chick is never allowed to have a worm
to himself for long, and soon Fluffy and Darkie were after Cheeky
trying hard to get the worm for themselves. Round and round they
ran, into the long grass round the food pails, into the corners of the
yard and out again, till at last poor Cheeky despaired of ever being
able to eat the worm, there never was a second’s time. At last, he
tried to take a bite, and at once it was snatched away from him by
Darkie, and then the race began again and they all rushed about
after each other till Fluffy got it. He was just going off with it when Mr.
Cock came along, a very proud and dignified gentleman. “Ah, Ha!”
he cried, “What have we here?”
“Please, it’s mine,” said Cheeky, “he snatched it away from me.”
The cock looked very surprised, for I don’t think any other chick
would have been bold enough to speak to him at all. Every one was
rather afraid of him, for he had a very sharp beak and would take no
back answers.
“It isn’t yours at all!” cried Darkie and Fluffy. “You stole it, you didn’t
even find it yourself.”
“Please, don’t make such a noise,” said the cock, “I never knew
such rowdy, ill-behaved chickens, you have no dignity at all. Now, so
that there shall be no quarrel, I am going to remove the cause,” and
he stooped down and gobbled up the worm.
 Made them take some grain out of her hand.

This is really what happened; it is quite true for Joan saw it all. I
am not quite so sure that the cock actually used these words
because, you see, Joan couldn’t understand his language, but she
thought he said something very like it.

CHAPTER III
JOAN SAVES A CHICKEN’S LIFE

I wonder if you have ever seen a hen feed her chickens. It is a

pretty sight. She scratches on the ground, and when she finds
something to eat, she calls her children. “Tuk, tuk, tuk,” she cries,
and all the little chicks come scurrying up, for they understand quite
well what she means, and are always ready for something more to
eat. They peep out all sorts of pleased things in chicken language,
and each tries to push the others away to get most for himself.
 Joan loved to see them, and she used to imitate the old hen and
call the chickens and give them some chopped egg. They liked this
and got so tame that they would eat out of her hand. Joan’s aunt
was quite surprised, and one day she made them take some grain
out of her hand. Cheeky jumped on to her thumb, and Piggy and
Fluffy lost no time in getting to their dinner. The other three were not
quite so trustful. Honeypot looked up in her face as much as to say,
“I know Joan, she’s a friend, but I’m not quite so sure about you.”
The others, too, were a little undecided and hesitated for a time, so
Joan felt the chickens were really sensible enough to know her, after
all.
The chickens were so pretty and attractive that Joan wanted them
to be like real people, and she thought of all sorts of ideas which she
pretended they were thinking. But even she had to own they were
not very original. If one did a thing, they would all do it. Their favorite
game was certainly “Follow-my-leader.” One would run into a corner
and scratch, and at once the others would run and scratch, too. Then
they would all run to the gate, and if anything came along there
would be a quick scamper back to mother and not one would be left
behind.
Joan watched them once playing “Follow-my-leader” round a barn
door. It was standing wide open and Fluffy ran behind it and poked
his head through the crack, just below the hinge. It was not a big
space, but Fluffy could just squeeze his neck through. Of course, the
others must follow his lead and try and do the same; and all would
have been well if only Piggy’s head had been the same size as the
others. I expect it was because he had eaten rather more than the
rest that his head was just a tiny bit bigger. When it came to his turn,
he pushed hard to get his head through, as all the others had done,
but when he tried to pull it back, it stuck. It was terrible; there he was
held as if he were in a trap. Oh, what a noise he made! Joan heard
his shrill frightened peeping and thought at least he must be nearly
killed. She came running up and was very alarmed when she saw
what was the matter. But she was a sensible child, and instead of
running away to call some one, she squeezed in behind the door,
being very careful not to push it to, as that would have choked the
poor little chick. Then she firmly took hold of Piggy, and putting two
fingers through the crack she gently pushed the fluffy little head back
through it and pulled the chicken out of danger. Just as she had put
him on the ground and he had given another loud peep to show
there was no harm done, the old hen came running up clucking in
such an excited manner as much as to say, “it doesn’t do to leave
these babies one minute, they are bound to get into mischief.” She
had heard her chick crying and had hurried up to see what she could
do. I wonder what she would have done to help. Something I feel
sure, for it is wonderful how clever mother animals and birds can be
when it is a case of taking care of their young.
Joan told her she had better lead her little family further away from
such a danger trap, and to help her Joan called the chickens to the
other end of the yard, and when they came running up, there on the
ground lay a nice long worm she had found for them, and she took
care that each had a bit.

It is very funny to see chickens drink.