The death of a child is a special sorrow. No matter the circumstances, a childâ€™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 â€œmedicine with a heart.â€ At worst, familiesâ€™ 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 childâ€™s life-threatening illness or injury. Table of Contents <ul>
<li>Front Matter</li>
<li>Summary</li>
<li>1. Introduction</li>
<li>2. Patterns of Childhood Death in America</li>
<li>3. Pathways to a Child</li>
<li>4. Communication, Goal Setting, and Care Planning</li>
<li>5. Care and Caring From Diagnosis Through Death and Bereavement</li>
<li>6. Providing, Organizing, and Improving Care</li>
<li>7. Financing of Palliative and End-of-Life Care for Children and Their Families</li>
<li>8. Ethical and Legal Issues</li>
<li>9. Educating Health Care Professionals</li>
<li>10. Directions for Research</li>
<li>References</li>
<li>Appendix A: Study Origins and Activities</li>
<li>Appendix B: Prognostication Scores</li>
<li>Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents</li>
<li>Appendix D: Cultural Dimensions of Care At Life</li>
<li>Appendix E: Bereavement Experiences After the Death of a Child</li>
<li>Appendix F: End-of-Life Care in Emergency Medical Services for Children</li>
<li>Appendix G: Education in Pediatric Palliative Care</li>
<li>Appendix H: Progress in Pediatric Palliative Care in New York State--A Demonstration Project</li>
<li>Appendix I: Committee Biographical Statements</li>
<li>Index</li>
</ul>

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

Health, Fitness & Dieting

Board on Health Sciences Policy

Committee on Palliative and End-of-Life Care for Children and Their Families

INSTITUTE OF MEDICINE

Diseases & Physical Ailments

National Academies Press

This document is a brief summary of the Institute of Medicine report entitled When Children Die: Improving Palliative and End-of-Life Care for Children. Better care is possible now, but current methods of organizing and financing palliative, end-of-life, and bereavement care complicate the provision and coordination of services to help children and families and sometimes require families to choose between curative or life-prolonging care and palliative services, in particular, hospice care. Inadequate data and scientific knowledge impede efforts to deliver effective care, educate professionals to provide such care, and design supportive public policies. Integrating effective palliative care from the time a child's life-threatening medical problem is diagnosed will improve care for children who survive as well as children who die-and will help the families of all these children. The report recognizes that while much can be done now to support children and families, much more needs to be learned. The analysis and recommendations reflect current knowledge and judgments, but new research and insights will undoubtedly suggest modifications and shifts in emphasis in future years.

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

Medical Books

Allied Health Professions

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