The death of a child is a special sorrow. No matter the circumstances, a childa (TM)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 a /medicine with a heart.a At worst, familiesa (TM) 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 area "and are nota "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 nota "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 childa (TM)s life-threatening illness or injury.
Marilyn J. Field and Richard E. Behrman, Editors, Committee on Palliative and End-of-Life Care for Children and Their Families
1 Front Matter; 2 Summary; 3 1. Introduction; 4 2. Patterns of Childhood Death in America; 5 3. Pathways to a Child; 6 4. Communication, Goal Setting, and Care Planning; 7 5. Care and Caring From Diagnosis Through Death and Bereavement; 8 6. Providing, Organizing, and Improving Care; 9 7. Financing of Palliative and End-of-Life Care for Children and Their Families; 10 8. Ethical and Legal Issues; 11 9. Educating Health Care Professionals; 12 10. Directions for Research; 13 References; 14 Appendix A: Study Origins and Activities; 15 Appendix B: Prognostication Scores; 16 Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents; 17 Appendix D: Cultural Dimensions of Care At Life; 18 Appendix E: Bereavement Experiences After the Death of a Child; 19 Appendix F: End-of-Life Care in Emergency Medical Services for Children; 20 Appendix G: Education in Pediatric Palliative Care; 21 Appendix H: Progress in Pediatric Palliative Care in New York State--A Demonstration Project; 22 Appendix I: Committee Biographical Statements; 23 Index
National Research Council, Division of Behavioral and Social Sciences and Education, Institute of Medicine, and Families Board on Children, Youth, Steve Olson
Institute of Medicine, Board on the Health of Select Populations, and Transgender Health Issues and Research Gaps and Opportunities Committee on Lesbian, Gay, Bisexual
Institute of Medicine, Board on Population Health and Public Health Practice, Division of Health Promotion and Disease Prevention, Division of International Health
Institute of Medicine, Committee to Develop Methods Useful to the Department of Veteran Affairs in Estimating Its Physician Requirements, Joseph Lipscomb
Institute of Medicine, Board on Health Sciences Policy, Committee on Understanding Premature Birth and Assuring Healthy Outcomes, Adrienne Stith Butler, Richard E. Behrman
Institute of Medicine, Board on Health Sciences Policy, Committee on Clinical Research Involving Children, Richard E. Behrman, Marilyn J. Field, Richard E Behrman, Marilyn J Field
Institute of Medicine, Board on Health Sciences Policy, and Practice Committee on Conflict of Interest in Medical Research, Education, Marilyn J. Field, Bernard Lo
Institute of Medicine, Board on Health Sciences Policy, Committee on Postmarket Surveillance of Pediatric Medical Devices, Hugh Tilson, Marilyn J. Field, Marilyn J Field
Institute of Medicine, Board on Health Sciences Policy, Committee on Pediatric Studies Conducted Under the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA), Thomas F. Boat, Marilyn J. Field
Institute of Medicine, Board on Health Sciences Policy, Committee on Accelerating Rare Diseases Research and Orphan Product Development, Thomas F. Boat, Marilyn J. Field