When Children Die : Improving Palliative and End-of-Life Care for Children and Their Families Hardback
by Institute of Medicine, Board on Health Sciences Policy, Committee on Palliative and End-of-Life Care for Children and Their Families
Edited by Richard E. Behrman, Marilyn J. Field
Hardback
Description
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 are?and are not?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 not?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. Table of ContentsFront MatterSummary1. Introduction2. Patterns of Childhood Death in America3. Pathways to a Child4. Communication, Goal Setting, and Care Planning5. Care and Caring From Diagnosis Through Death and Bereavement6.
Providing, Organizing, and Improving Care7. Financing of Palliative and End-of-Life Care for Children andTheir Families8.
Ethical and Legal Issues9. Educating Health Care Professionals10. Directions for ResearchReferencesAppendix A: Study Origins and ActivitiesAppendix B: Prognostication ScoresAppendix C: Assessing Health-Related Quality in End-of-Life Carefor Children and AdolescentsAppendix D: Cultural Dimensions of Care At LifeAppendix E: Bereavement Experiences After the Death of a ChildAppendix F: End-of-Life Care in Emergency Medical Services forChildrenAppendix G: Education in Pediatric Palliative CareAppendix H: Progress in Pediatric Palliative Care in New YorkState--A Demonstration ProjectAppendix I: Committee Biographical StatementsIndex
Information
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Available to Order - This title is available to order, with delivery expected within 2 weeks
- Format:Hardback
- Pages:712 pages
- Publisher:National Academies Press
- Publication Date:09/02/2003
- Category:
- ISBN:9780309084376
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Information
-
Available to Order - This title is available to order, with delivery expected within 2 weeks
- Format:Hardback
- Pages:712 pages
- Publisher:National Academies Press
- Publication Date:09/02/2003
- Category:
- ISBN:9780309084376
