Interdisciplinary Pediatric Palliative Care

• Interdisciplinary resource for all clinicians caring for seriously ill children including doctors, nurses, psychosocial clinicians, chaplains and others
• Each chapter includes a family perspective vignette to promote care team understanding of this very central perspective
• This new edition is founded on a wealth of evidence that reflects the innovation in pediatric palliative care science in the past 10 years

Description

Interdisciplinary Pediatric Palliative Care provides a uniquely integrated, comprehensive resource about palliative care for seriously ill children and their families. The field of palliative care is based on the fundamental principle that an interdisciplinary team is optimal in caring for patients and their families throughout the illness trajectory. The text integrates themes including goals of care, discipline-specific roles, cultural and spiritual considerations, evidence-based outcomes, and far more. It emphasizes the value of words and high-quality communication in palliative care. Importantly, content acknowledges challenging periods between team members, and how those can ultimately benefit team, patient, and family care outcomes. Each chapter includes the perspective of the family of a seriously ill child in the form of a vignette to promote care team understanding of this crucial perspective. This second edition is founded on a wealth of evidence that reflects the innovations in pediatric palliative care science over the past 10 years, including initiatives in clinical care, research, and education. Interdisciplinary Pediatric Palliative Care is appropriate for all pediatric palliative clinicians (PPC), including physicians, nurses, psychosocial clinicians, chaplains, and many others. All subspecialists who deliver care to seriously ill children, will find this book a must-have for their work.

Advance Praise for Interdisciplinary Pediatric Palliative Care, Second Edition

"This new edition is as much a testament to pediatric palliative care's remarkable evolution as a field as it is a quintessential playbook for providing the high-quality holistic and compassionate care that families with seriously ill children desperately want. Every page thoughtfully weaves together how interprofessional teams can contribute collaboratively to learning about and supporting the preferences, needs and priorities of the precious patients and families in their circle of care. It is a must read for all practitioners to enhance their palliative care understanding, appreciation and ability as a foundation for optimizing quality of life in practice." - Rebecca Kirch, JD, Executive Vice President of Policy and Programs, National Patient Advocate Foundation

"This book offers a truly contemporary and comprehensive view of the entire field of pediatric palliative care. The focus on social determinants of health, cultural humility, and disparities in care could not be timelier, and the section highlighting conflict and conflict resolution should be required reading. The continued and purposeful inclusion of interdisciplinary clinicians in producing each chapter models the palliative care team itself-an approach in which all voices are necessary as we seek to provide the most compassionate care possible." - Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM, Associate Professor of Anesthesia, Medical Director, StarShine Hospice and Palliative Care, Cincinnati Children's Hospital Medical Center

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