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

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

by Marilyn J. Field, Richard E. Behrman, Committee on Palliative and End-of-Life Care for Children and Their Families
     
 

ISBN-10: 0309084377

ISBN-13: 9780309084376

Pub. Date: 01/20/2003

Publisher: National Academies Press

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

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Overview

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.

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Product Details

ISBN-13:
9780309084376
Publisher:
National Academies Press
Publication date:
01/20/2003
Edition description:
New Edition
Pages:
712
Product dimensions:
6.00(w) x 9.00(h) x 1.40(d)

Table of Contents

Preface
Acknowledgments
Reviewers
Summary1
1Introduction19
2Patterns of Childhood Death in America41
3Pathways to a Child's Death72
4Communication, Goal Setting, and Care Planning104
5Care and Caring from Diagnosis Through Death and Bereavement141
6Providing, Organizing, and Improving Care180
7Financing of Palliative and End-of-Life Care for Children and their Families234
8Ethical and Legal Issues293
9Educating Health Care Professionals328
10Directions for Research350
References392
App. AStudy Origins and Activities445
App. BPrognostication Scores449
App. CAssessing Health-Related Quality of Life in End-of-Life Care for Children and Adolescents476
App. DCultural Dimensions of Care At Life's End for Children and Their Families509
App. EBereavement Experiences After the Death of a Child553
App. FEnd-of-Life Care in Emergency Medical Services for Children580
App. GEducation in Pediatric Palliative Care599
App. HProgress in Pediatric Palliative Care in New York State - A Demonstration Project638
App. ICommittee Biographical Statements665
Index671

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