Interdisciplinary Pediatric Palliative Care

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 forthe 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 StageChapter 1 The Language of Pediatric Palliative CareJoanne Wolfe, Pamela S. Hinds, and Barbara M. SourkesChapter 2 The New and Changing Landscape of Children Receiving Pediatric Palliative Care in the US: An Evidence Base EmergesBryan Sisk, Kimberley Widger, and Chris FeudtnerChapter 3 Children's Voices: The Experience of Patients and Their SiblingsAnna C. Muriel, Abby R. Rosenberg, Barbara M. SourkesChapter 4 Settings of CareMoshe Cohn, Emily Johnston, and Julia McBeeChapter 5 Cultural Humility, Social Determinants, and Disparities in Pediatric Palliative CareDanielle Jonas, Alexis Morvant, and Sara Munoz-BlancoChapter 6 Program DevelopmentTammy I. Kang, Daniel P. Mahoney, Meaghann S. Weaver, and Stacy S. RemkeChapter 7 Interdisciplinary Education and TrainingKatharine E. Brock, Jennifer Hwang, Marsha Joselow, Blyth Lord, Janet Duncan, and Deborah A. LafondChapter 8 Quality in Pediatric Palliative CareConrad Williams IV, Amanda L. Thompson, and Kathie KoblerSection II Relationships and CommunicationChapter 9 Relationships with Children and Ensuring Their Voices in Decision-MakingKaren Ron-Li Liaw, Becky Lois, Julia McBee, and Erin CollinsChapter 10 Family Experience and RelationshipsKim Mooney-Doyle, Meghan L. Marsac, Elissa G. Miller, Janet A. Deatrick, and Melissa A. AlderferChapter 11 Team RelationshipsMichelle R. Brown, Jody Chrastek, and Kris CatrineChapter 12 Witness to Suffering: The Clinician ExperienceBarbara M. Sourkes, Stephen Liben, and Danai PapadatouChapter 13 Practical Aspects of Palliative Care CommunicationLindsay Ragsdale, Tessie October, and Caitlin ScanlonChapter 14 Advance Care Planning Along the Care ContinuumJonathan Mullin, Rachael Burgess, and Justin BakerChapter 15 Anticipatory Grief and BereavementJennifer M. Snaman, Terrah Foster Akard, Sue E. Morris, and Lori WienerChapter 16 Resolving Conflicts in Pediatric Palliative CareRobert Macauley, Jody Chrastek, Amie Brandtjen, Harvey Cohen, and Thaddeus M. PopeSection III Easing SufferingChapter 17 Psychological SymptomsChase Samsel, Kathleen Perko, Lori Wiener, and Maryland PaoChapter 18 Existential Distress and SufferingElisha Waldman and Mark BartelChapter 19 Neurological SymptomsShih-Ning Liaw, Jenna E. Freitas, and Julie HauerChapter 20 Pediatric Delirium in the Palliative Care SettingPaula Tran, Jeffrey Moss, Eunice Koh, Katherine Ort, Richard J. Shaw, and Michelle GoldsmithChapter 21 FatigueChristina Ullrich, Shana Jacobs, and Pamela S. HindsChapter 22 Sleep and Circadian RhythmsToluwalase A. Ajayi, Eric S. Zhou, and Valerie E. RogersChapter 23 Prevention and Treatment of Pain in Children with Serious IllnessStefan J. Friedrichsdorf, Lauren Heathcote, Michael Sangster, Donna Eull, and Amber BoruckiChapter 24 Respiratory SymptomsRose Sharpe, Megan Jordan, Raymond Barfield, Sarah Gall, Margarita Bidegain, Kristen Lakis, Renee Bartle, and Emily LayokChapter 25 Gastrointestinal SymptomsKevin Madden and Margaret M. MahonChapter 26 Dermatologic Conditions and Symptom ControlKimberly A. Bower, Julie Good, Anke Reineke, Cristina Gordon, and Michele R. Burdette-TaylorChapter 27 Easing Distress When Death Is NearDebra Lotstein and Rachel RuschSection IV Illness and Treatment ExperienceChapter 28 Prenatal and Neonatal Palliative CareChristy Cummings, Anne Sullivan, Lauren Cramer, and Renee BossChapter 29 Children with Complex Chronic ConditionsJori Bogetz, Christopher A. Collura, and Christy TorkildsonChapter 30 Advanced Heart DiseaseMelissa K. Cousino, Chelsea Heneghan, and Elizabeth D. BlumeChapter 31 Cystic Fibrosis and Other Childhood Lung DiseasesElisabeth Potts Dellon, Jessica Goggin, and Elliot RabinowitzChapter 32 Solid Organ TransplantTimothy Klouda, Debra Boyer, Lynne Helfand, Michael McCown, Nicholas Purol, and Dawn FreibergerChapter 33 Oncological IllnessesSarah McCarthy, Kimberly A. Pyke-Grimm, and Angela M. FeracoChapter 34 Hematologic SymptomsBarbara Speller-Brown, Jillian Campbell, Allistair Abraham, Priyal Patel, Lisa Humphrey, and Jennifer WebbChapter 35 Primary and Acquired Immune Deficiency DisordersWei Li Adeline Koay, Natella Rakhmanina, Megan Wilkins, Sarah Matthews, and Ami Doshi