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.

• 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