Palliative Care for Infants, Children, and Adolescents: A Practical Handbook

Preface

xv In the seven years since the publication of Palliative Care for Infants, Children , and Adolescents, the field of pediatric palliative care has undergone explosive growth in recognition, availability, and opportunity. It has been gratifying to have played a role in this transformation and to be witness to the success of a field that is a passion for all of us. In 2008, the subspecialty of Palliative Medicine was granted official recognition by the American Board of Medical Specialties. This cemented the approval of a Section of Hospice and Palliative Medicine within the American Academy of Pediatrics (now boasting over 200 members) and led to the development of dedicated educational tracks and mentorship opportunities designed especially for pediatric caregivers within the Center to Advance Palliative Care and its Palliative Care Leadership Centers, as well as approval of subspecialty fellowship training programs in palliative medicine (some of which are pediatric) by the Accreditation Council for Graduate Medical Education . Simultaneously, additional pediatric-specific educational opportunities have emerged, including the End-of-Life Nursing Education Consortium (ELNEC) Pediatric Training Program, the National Hospice and Palliative Care Organization pediatric curriculum, developed within the Children’s International Project on Palliative/Hospice Services (ChIPPS), and the Initiative for Pediatric Palliative Care. There is now an increasing frequency of publications addressing pediatric palliative care in the peer-reviewed medical and nursing literature, as well as other texts addressing palliative care for children , numerous pediatric-specific palliative care conferences and conference tracks, and pediatric interest groups within national palliative care organizations . Most importantly, there are a burgeoning number of clinical care PREFACE xvi preface experts and programs available to meet the palliative care needs of children living with life-threatening conditions and their families. It has been a pleasure to work with our new editorial partner, Dr. Sarah Friebert, whose knowledge, skill, and work ethic have been well showcased in this endeavor. A broad array of professional and family authors, expanded since the first edition, has served as our mentors. What a privilege it has been for us to learn from, to appreciate, and to have the pleasure of creating this high-quality resource with them in the attempt to assist and to serve families and health care professionals. It is our hope that this text will inspire caregivers new to pediatric and/ or palliative care, as well as those who have been practicing in the field, to reach new heights in their care of children and families living with lifethreatening conditions. We also hope that families reading this text will be better prepared to advocate and care for their own children. We salute the bravery and caring of those involved in this field and are excited to have had the privilege to contribute to the ongoing growth of pediatric palliative care through the publication of this book. ...