Fundamental Facets of Pediatric Hospice Care

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If one of the surest signs of a maturing discipline within medicine is the growth in the number of textbooks devoted to the topic, then pediatric palliative and hospice care is blossoming. Among several fine textbooks that are either already available or in the works, in the vanguard stands Hospice Care for Children, which was first published in 1993 and now appears in a revised and updated third edition.

As the title suggests, the multidisciplinary text (comprising 21 chapters from 39 contributors) focuses more on the hospice-side of the pediatric palliative care spectrum, in terms of the clinical care of dying infants, children, and adolescents, as well as care for their families, and in terms of program descriptions. There are separate single chapters devoted to how children understand death, to pain and symptom assessment and treatment, to the psychosocial aspects of life-threatening childhood illnesses, as well as death during the neonatal period and children with human immunodeficiency virus infection and acquired immunodeficiency syndrome; chapters on the roles of palliative care nursing and of primary care pediatricians in hospice care, as well as a chapter on ethical decision making; but otherwise, the book is devoted to issues of grief and bereavement care, of staff support, and of describing the myriad ways in which hospice and palliative care have been incorporated into the care of children with life-threatening illnesses around the world.

Although a newcomer to the field of pediatric palliative care could benefit greatly by reviewing the contents of this book, gleaning important nuggets of information, the greater value for more experienced readers will likely come from engaging each chapter as a conversation with seasoned practitioners from a broad array of disciplines, and learning from their overall perspective, as well as the details they offer on how to provide care. For instance, the chapter on the spiritual care of children and parents is a splendid and welcoming invitation to enter into conversations and interactions that can touch upon, and hopefully attend to, a vast array of spiritual concerns. The chapters on bereavement care for parents and siblings, present information but also perspectives on how to think about these undertakings. Similarly, the chapter on therapeutic play and creative arts is crammed full of fabulous concrete suggestions that cohere together in a vision of holistic care for children. A chapter on school bereavement programs, calling them essential, is a clarion call for this woefully unmet need. Another chapter on how the pediatric approach to palliative care can be applied to the care of adults raises fascinating questions regarding our mindset about the care of others. Meanwhile, the chapters regarding different configurations of pediatric hospice and palliative care programs each offer important insights and tips as to how the programs are structured from clinical staffing to administrative arrangements (including a global catalog of pediatric hospice and palliative care programs, discussion of the role, and training of hospice volunteers, an extensive discussion of the Children's Hospice International's Program for All-Inclusive Care for Children and Their Families waiver program, and a fascinating historical review of the pediatric palliative care program at St. Mary's Hospital for Children in Bayside, New York). All in all, Hospice Care for Children provides a splendid portal of entry into this rich interdisciplinary conversation.