When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families

The death of a child is a special sorrow. No matter the circumstances, a child’s death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify “medicine with a heart.†At worst, families’ encounters with the health care system will leave them with enduring painful memories, anger, and regrets.

When Children Die examines what we know about the needs of these children and their families, the extent to which such needs areâ€"and are notâ€"being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do notâ€"and will likewise help all families who suffer with their seriously ill or injured child.

Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child’s life-threatening illness or injury.

• Front Matter
• Summary
• 1. Introduction
• 2. Patterns of Childhood Death in America
• 3. Pathways to a Child
• 4. Communication, Goal Setting, and Care Planning
• 5. Care and Caring From Diagnosis Through Death and Bereavement
• 6. Providing, Organizing, and Improving Care
• 7. Financing of Palliative and End-of-Life Care for Children and Their Families
• 8. Ethical and Legal Issues
• 9. Educating Health Care Professionals
• 10. Directions for Research
• References
• Appendix A: Study Origins and Activities
• Appendix B: Prognostication Scores
• Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents
• Appendix D: Cultural Dimensions of Care At Life
• Appendix E: Bereavement Experiences After the Death of a Child
• Appendix F: End-of-Life Care in Emergency Medical Services for Children
• Appendix G: Education in Pediatric Palliative Care
• Appendix H: Progress in Pediatric Palliative Care in New York State--A Demonstration Project
• Appendix I: Committee Biographical Statements
• Index