The Edge of MedicineStories of Dying Children and Their Parents

The Edge of MedicineStories of Dying Children and Their Parents

David J. Bearison

Print publication date: 2012

ISBN: 9780195389272

Publisher: Oxford University Press

Abstract

This book is a sequel to When treatment fails: How Medicine Cares for Dying Children (Oxford University Press, 2006). Its purpose was to systematically document persuasive issues that arise in pediatric end-of-life palliative care: when to withhold or withdraw curative treatments, how to manage pain and suffering, how to communicate bad news to patients and families, how the staff copes with patients dying and how they are able to move on, how best to train staff in pediatric end-of-life care, and how the staff understands the reactions of dying patients and their families. Similar in form (i.e., narrative analyses) and purpose, this book addresses these issues. It systematically analyzes and documents the challenges of pediatric end-of-life palliative care but does so from the special perspectives provided by narratives from children at the end of their lives and their families. It captures the frustrating and diverse voices among dying children and their parents. Together, these two books significantly advance ways to improve standards of care and promote transparency in ethically complicated deliberations concerning end-of-life care for children. Their findings will be used to develop pediatric palliative care policies and guidelines, teaching programs, advocacy resources, treatment protocols, and innovative service delivery models of national significance that improve the quality-of- life for children who are approaching the end of life and their families.