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 Contents Front Matter
Summary 1. Introduction 2. Patterns of Childhood Death in America
3. Pathways to a Child 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 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 in New York
State--A Demonstration Project Appendix I: Committee Biographical
Statements Index
General
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