A Parent’s Guide to Enhancing Quality of Life in Children with Cancer Edited By Ruth i. Hoffman, MPH & Sandra e. Smith A Parent’s Guide to Enhancing Quality of Life in Children with Cancer Edited by Ruth i. Hoffman, MPH & Sandra e. Smith A Parent’s Guide to Enhancing Quality of Life in Children with Cancer Edited by Ruth I. Hoffman, MPH & Sandra E. Smith Copyright© 2014 by American Childhood Cancer Organization® (ACCO) Printed in China Published by American Childhood Cancer Organization® Cover and Interior Design: Ruth I. Hoffman MPH Interior Layout: Ruth I. Hoffman, MPH Printing History: April, 2015 ISBN 978-0-9854593-2-1 Library of Congress Control Number: 2014915872 The American Childhood Cancer Organization’s® name and logo are registered trademarks of the national office of the American Childhood Cancer Organization®. Visit us on the web at: http://www.acco.org. This book is written to provide information about childhood cancer and should not be used as an alternative to receiving professional advice. Every effort has been made to ensure that the information in this book is accurate at the time of printing, however, there is no guarantee that the information will remain current over time. Always seek the advice of a trained professional. ® ACCO.ORG With the support of To Dr. Beth Cairney and to Dr. Kathy Warren for the personal sacrifices you have made to walk hand in hand with families of children with cancer— from diagnosis, through treatment and beyond…. Table of Contents Preface VII Part I. All About Living 1. Pediatric Palliative Care: 1 The amily’sF Lifeline to Quality of Life Rebecca Kirch, JD Joanne Wolfe, MD, MPH Blyth Lord, MEd 2. The arent’sP Role 13 Deborah A. Lafond, DNP, PPCNP-BC, CPON, CHPPN Danielle D. Leach, MPA 3. Symptom Management 27 Melody Cunningham, MD Daniel Mahoney, MD Deena Levine, MD Jennifer Snaman, MD Joanna Lyman, MA, CCLS Justin Baker, MD 4. Pain Management 53 Maria Michaela F. Nalamliang, RN, MSN, CPNP Debra S. Lotstein, MD, MPH Paul M. Zeltzer, MD Lonnie Zeltzer, MD 5. Communication 85 Lori Wiener, PhD Barbara Sourkes, PhD 6. School 107 Barbara Jones, PhD, MSW Farya Phillips, PhD, CCLS 7. Helping Sick Kids Be Kids 125 Elana E. Evan, PhD 8. Seeking Support: How, When and Why 139 Marsha Joselow LICSW, MSW Janet Duncan, MSN, CPNP Rachael Menius, MSN, CPNP-AC, CPON Christine Reilly 9. Strength. Love. Hope. 155 Tammy I. Kang, MD, MSCE Jennifer Walter, MD, PhD, MS Abby R. Rosenberg, MD, MS Chris Feudtner, MD, PhD, MPH Part II. When Hope Changes 10. Hoping for the Best, Preparing for the Worst 173 Elisha Waldman, MD 11. Organ, Tissue and Tumor Tissue Donation: 187 Giving the Gifts of Life and Hope Angela Punnett, MD, FRCPC Kimberlee Spady, JD 12. Grief 205 Christine Denhup, MSN, PhD 13. The Child’s Legacy 221 Catherine Kelly-Langen, MD Nancy Carst, LISW Sarah Friebert, MD Part III. Appendices A. Resources 243 B. Research Articles 257 Preface The American Childhood Cancer Organization’s (ACCO) mission is to provide information and support for children and adolescents with cancer and their families; to provide grassroots leadership through advocacy and awareness; and to support research leading to a cure for all children diagnosed with this life-threatening disease. Since ACCO's founding in 1970, the five year survival rate of childhood cancer in the U.S. has risen to approximately eighty percent. This improvement in survival brings hope to tens of thousands of families whose children are treated for cancer each year. In spite of the progress, children continue to be treated with aggressive therapies including chemotherapy, radiation and surgery. Treatment can leave the child in pain, feeling isolated and alone. The diagnosis leaves parents struggling to care and advocate for their sick children and to educate themselves about the disease while trying to maintain some sense of normalcy for their families. Pediatric palliative care focuses on quality of life and addresses the physical and emotional needs of the patients as well as the needs of their families. Provided by an interdisciplinary team comprised of doctors, nurses, social workers, child life specialists, chaplains and psychologists, these specialists work together with the child’s oncologist to provide relief from the physical symptoms and emotional stress of cancer. Pediatric palliative care ideally begins at the child's diagnosis and continues throughout the course of treatment, as needed. It is recommended for all children diagnosed with a life-threatening illness at any age and any stage, and is to be provided alongside treatments that are meant to cure. It is our hope that this book will increase the family's understanding of the benefits of palliative care for the child diagnosed with cancer, which will lead to improved pain and symptom management and enhanced quality of life for the child and his or her family. The Contributors I am deeply indebted to the following professionals who gave of their time and expertise to author comprehensive chapters for this book. My deepest gratitude Preface VII is extended to Rebecca Kirch, JD, Joanne Wolfe, MD, MPH, Deborah A. Lafond, DNP, PPCNP-BC, CPON, CHPPN, Danielle D. Leach, MPA, Melody Cunningham, MD, Daniel Mahoney, MD, Deena Levine, MD, Jennifer Snaman, MD, Joanna Lyman, MA, CCLS, Justin Baker, MD, Michaela F. Nalamliang, RN, MSN, CPNP, Debra S. Lotstein, MD, MPH, Paul M. Zeltzer, MD, Lonnie Zeltzer, MD, Lori Wiener, PhD, Barbara Sourkes, PhD, Marsha Joselow LICSW, MSW, Janet Duncan, MSN, CPNP, Rachael Menius, MSN, CPNP-AC, CPON, Christine Reilly, Barbara Jones, PhD, MSW, Farya Phillips, PhD, CCLS, Elana E. Evan, PhD, Tammy I. Kang, MD, MSCE, Jennifer Walter, MD, PhD, MS, Abby R. Rosenberg, MD, MS, Chris Feudtner, MD, PhD, MPH, Elisha Waldman, MD, Angela Punnett, MD, FRCPC, Kimberlee Spady, JD, Christine Denhup, MSN, PhD, Catherine Kelly-Langen, MD, Nancy Carst, LISW, Sarah Friebert, MD. My thanks would not be complete without expressing my heartfelt appreciation to all of the families who took time to write and share their children's personal stories. These stories give credibility and passion to the book and emphasize why pediatric palliative care is so critically needed. I cannot adequately express my gratitude for the time that Sandy Smith spent pulling together the parent stories and editing the book. Sandy lost her son Andrew to brain cancer and has turned her own grief into generously giving of herself to help other families navigate the cancer journey. I also want to personally thank Bonnie Woodworth, whose daughter Tatumn also died of brain cancer, for the time she spent providing a third set of eyes during the editing process. Your help is appreciated more than you will ever know. Warm thanks to Adelae Durand and Sammy Chu for providing valuable feedback, as well. I wish to thank Jessie and Kristi Allen for sharing the picture of their daughter Olivia for the cover of this book. Olivia was diagnosed with hepatoblastoma when she was two. Olivia, seen holding her father’s hand, was three years old, and six months in remission, when the picture was taken. She is now five years old and has been cancer free for two years. When I asked Kristi if ACCO could use Olivia's picture on the cover of the book she responded, "I think it is great you are writing a book about palliative care. Olivia was miserable for pretty much the entire treatment time and my regular parenting knowledge wasn't adequate to help her deal with the pain. I felt so helpless because I couldn't take it all away and it made me so sad. At times during treatment, I thought her spirit was broken and wouldn't recover. But today, she is a spunky, spirited, full of life little girl! It is amazing what our kids can endure and still be ok. But I needed other parents (who had been through what I had been through) to encourage me during Olivia's VIII Preface treatment that she would truly be ok when this was all over, so I am glad you have parent voices in the book too." A big thank you to Marie-Dominique Verdier of MDVphoto for working with ACCO to capture the photo of Olivia. Finally, I wish to thank Joanne Wolfe for her help with the organization of the book, as well as author recommendations. Book Composition This book is written both for parents of children diagnosed with cancer as well as for healthcare providers. Chapters are written independently, and parents and providers are encouraged to read those chapters that most directly apply to the child's current medical needs. For example, parents whose children are experiencing pain with treatment might want to begin with chapter 4, Pain Management in Children with Cancer. Others might want to read the book from start to finish. The book is divided into three major sections. Part I, All About Living provides a comprehensive understanding of the meaning of palliative care, as well as applications to symptom mananegement, pain management and ways to improve the child's, and family's, quality of life. Part II, When Hope Changes addresses the difficult questions that some families face when it becomes clear that cure is no longer possible. Part III, Appendices ends the book with two useful sections. • Appendix A lists a sampling of resources—books, websites, listservs, and organizations that assist families of children with cancer. • Appendix B is a compilation of journal articles that provides further reading opportunities for those wishing to dig deeper into specific palliative care topics addressed by the authors throughout the book.