Table of Contents

Section I Setting the Stage
Chapter 1 The Language of Pediatric Palliative Care
Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes
Chapter 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
Chapter 3 Children's Voices: The Experience of Patients and Their Siblings
Anna C. Muriel, Abby R. Rosenberg, Barbara M. Sourkes
Chapter 4 Settings of Care
Moshe Cohn, Emily Johnston, and Julia McBee
Chapter 5 Cultural Humility, Social Determinants, and Disparities in Pediatric Palliative Care
Danielle Jonas, Alexis Morvant, and Sara Munoz-Blanco
Chapter 6 Program Development
Tammy I. Kang, Daniel P. Mahoney, Meaghann S. Weaver, and Stacy S. Remke
Chapter 7 Interdisciplinary Education and Training
Katharine E. Brock, Jennifer Hwang, Marsha Joselow, Blyth Lord, Janet Duncan, and Deborah A. Lafond
Chapter 8 Quality in Pediatric Palliative Care
Conrad Williams IV, Amanda L. Thompson, and Kathie Kobler
Section II Relationships and Communication
Chapter 9 Relationships with Children and Ensuring Their Voices in Decision-Making
Karen Ron-Li Liaw, Becky Lois, Julia McBee, and Erin Collins
Chapter 10 Family Experience and Relationships
Kim Mooney-Doyle, Meghan L. Marsac, Elissa G. Miller, Janet A. Deatrick, and Melissa A. Alderfer
Chapter 11 Team Relationships
Michelle R. Brown, Jody Chrastek, and Kris Catrine
Chapter 12 Witness to Suffering: The Clinician Experience
Barbara M. Sourkes, Stephen Liben, and Danai Papadatou
Chapter 13 Practical Aspects of Palliative Care Communication
Lindsay Ragsdale, Tessie October, and Caitlin Scanlon
Chapter 14 Advance Care Planning Along the Care Continuum
Jonathan Mullin, Rachael Burgess, and Justin Baker
Chapter 15 Anticipatory Grief and Bereavement
Jennifer M. Snaman, Terrah Foster Akard, Sue E. Morris, and Lori Wiener
Chapter 16 Resolving Conflicts in Pediatric Palliative Care
Robert Macauley, Jody Chrastek, Amie Brandtjen, Harvey Cohen, and Thaddeus M. Pope
Section III Easing Suffering
Chapter 17 Psychological Symptoms
Chase Samsel, Kathleen Perko, Lori Wiener, and Maryland Pao
Chapter 18 Existential Distress and Suffering
Elisha Waldman and Mark Bartel
Chapter 19 Neurological Symptoms
Shih-Ning Liaw, Jenna E. Freitas, and Julie Hauer
Chapter 20 Pediatric Delirium in the Palliative Care Setting
Paula Tran, Jeffrey Moss, Eunice Koh, Katherine Ort, Richard J. Shaw, and Michelle Goldsmith
Chapter 21 Fatigue
Christina Ullrich, Shana Jacobs, and Pamela S. Hinds
Chapter 22 Sleep and Circadian Rhythms
Toluwalase A. Ajayi, Eric S. Zhou, and Valerie E. Rogers
Chapter 23 Prevention and Treatment of Pain in Children with Serious Illness
Stefan J. Friedrichsdorf, Lauren Heathcote, Michael Sangster, Donna Eull, and Amber Borucki
Chapter 24 Respiratory Symptoms
Rose Sharpe, Megan Jordan, Raymond Barfield, Sarah Gall, Margarita Bidegain, Kristen Lakis, Renee Bartle, and Emily Layok
Chapter 25 Gastrointestinal Symptoms
Kevin Madden and Margaret M. Mahon
Chapter 26 Dermatologic Conditions and Symptom Control
Kimberly A. Bower, Julie Good, Anke Reineke, Cristina Gordon, and Michele R. Burdette-Taylor
Chapter 27 Easing Distress When Death Is Near
Debra Lotstein and Rachel Rusch
Section IV Illness and Treatment Experience
Chapter 28 Prenatal and Neonatal Palliative Care
Christy Cummings, Anne Sullivan, Lauren Cramer, and Renee Boss
Chapter 29 Children with Complex Chronic Conditions
Jori Bogetz, Christopher A. Collura, and Christy Torkildson
Chapter 30 Advanced Heart Disease
Melissa K. Cousino, Chelsea Heneghan, and Elizabeth D. Blume
Chapter 31 Cystic Fibrosis and Other Childhood Lung Diseases
Elisabeth Potts Dellon, Jessica Goggin, and Elliot Rabinowitz
Chapter 32 Solid Organ Transplant
Timothy Klouda, Debra Boyer, Lynne Helfand, Michael McCown, Nicholas Purol, and Dawn Freiberger
Chapter 33 Oncological Illnesses
Sarah McCarthy, Kimberly A. Pyke-Grimm, and Angela M. Feraco
Chapter 34 Hematologic Symptoms
Barbara Speller-Brown, Jillian Campbell, Allistair Abraham, Priyal Patel, Lisa Humphrey, and Jennifer Webb
Chapter 35 Primary and Acquired Immune Deficiency Disorders
Wei Li Adeline Koay, Natella Rakhmanina, Megan Wilkins, Sarah Matthews, and Ami Doshi

About the Author

Dr. Joanne Wolfe is the Chief of the Division of Pediatric Palliative Care in the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute (DFCI) and the Director of Palliative Care at Boston Children's Hospital (BCH) and is a Professor of Pediatrics at Harvard Medical School. In addition to providing clinical pediatric palliative care, Dr. Wolfe directs a research program focusing on easing suffering and promoting wellbeing in
seriously ill children and their families and co-directs the Pediatric Palliative Care Research Network.

Dr. Pamela S. Hinds is the Executive Director of the Department of Nursing Science, Professional Practice, and Quality, the William and Joanne Conway Endowed Chair in Nursing Research, and the Research Integrity Officer at Children's National Health System in Washington, D.C., and a Professor of Pediatrics at the George Washington University, School of Medicine and Health Sciences in Washington, D. C. She is adjunct professor for the University of Pennsylvania, School of Nursing, Johns Hopkins
University, School of Nursing, the University of Maryland, College of Nursing, and the Fudan University of Shanghai, China.

Barbara M. Sourkes is Professor of Pediatrics (Critical Care) and Psychiatry and Behavioral Sciences (by courtesy of the Lucile Salter Packard Children's Hospital) at Stanford University. She has been the Kriewall-Haehl Director of the Palliative Care Program since 2001.