WHEN CHILDREN DIE Improving Palliative and End-of-Life Care for Children and their Families
Marilyn J. Field and Richard E. Behrman (Eds)
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Institute of Medicine of the National Academies
National Academies Press, 2003
690 pp
ISBN 0-309-08437-7
RRP $US 44.95, £32.95.
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This is a most impressive report from the Institute of Medicine’s (IOM) committee on palliative and end-of-life care for children and their families.
It provides a comprehensive review of palliative, end-of-life, and bereavement care for children with fatal or potentially fatal conditions and their families. In some regards, the palliative
care needs of pediatric patients are very similar to those of adult patients; in others, they are quite different – patients and their families may have to travel long distances to receive expert
care, the physiological resilience of children makes prognostication and decisions about appropriate therapy more difficult, and goal-setting and advanced care planning is done with the parents
rather than the patient.
The report provides a list of recommendations for the provision of comprehensive care that is child- and family-centered. The need for collaboration within and between institutions and agencies
involved in patient care, the need for educational programs and resources for professionals not accustomed to dealing with children with fatal conditions, and the need for all care to be culturally
appropriate all receive appropriate emphasis. The need to educate all professionals who care for children so that they have basic competence in palliative, end-of-life and bereavement care is
stressed. There is a chapter discussing the need to restructure hospice benefits for children that addresses the situation in the USA, but all of the other material is applicable to any developed
country.
Two hundred pages of background material covering prognostication scores, pediatric quality of life, cultural issues, bereavement experiences, education in pediatric palliative care, and the
New York Demonstration Project are not included in the book but are available at www.nap.edu/catalog/10390.html.
This is essential reading for anyone involved in pediatric palliative care. Even if you don’t deal with children, this book contains a wealth of information applicable to all palliative care
that will make you want to provide better and more appropriate care for your patients, whatever their ages.
Roger Woodruff
Director of Palliative Care, Austin Health, Melbourne, Australia
August 2004.
Author Information
Marilyn J. Field was the Study Director, Institute of Medicine of the National Academies
Richard E. Behrman is Clinical Professor of Pediatrics, Stanford University, California, USA.
Table of Contents
Summary
1. Introduction
2. Patterns of Childhood Death in America
3. Pathways to a Child's Death
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's End for Children and Their Families
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 inNew York State--A Demonstration
Project
Appendix I: Committee Biographical Statements
Index
