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

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.

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

Contents

PREFACE....................xv
ACKNOWLEDGMENTS....................xvii
REVIEWERS....................xix
SUMMARY....................1
Context and Challenges....................3
Working Principles....................7
Providing and Organizing Child- and Family-Centered Care....................8
Financing....................11
Legal and Ethical Issues....................14
Education of Health Professionals....................15
Directions for Research....................17
1 INTRODUCTION....................19
Problems and Challenges....................21
Improving Palliative, End-of-Life, and Bereavement Care for Children and Their Families....................24
Study Origins and Report Overview....................26
Guiding Principles....................28
Concepts and Definitions....................32
2 PATTERNS OF CHILDHOOD DEATH IN AMERICA....................41
Childhood Death in the Context of Improved Child Health....................41
Infant, Fetal, and Perinatal Deaths....................49
Mortality for Children Aged 1 to 4 and 5 to 9....................56
Mortality for Children Aged 10 to 14 and 15 to 19....................59
Gender, Socioeconomic, and Other Differences and Disparities in Child Mortality....................61
Where Children Die....................66
Implications....................70
3 PATHWAYS TO A CHILD'S DEATH....................72
Trajectories of Dying....................73
Illustrative Stories of Children and Their Families....................76
Pathways of Care....................85
What Do We Know About the Focus and Adequacy of Care for Children WhoDie?....................88
Implications....................102
4 COMMUNICATION, GOAL SETTING, AND CARE PLANNING....................104
What Is Happening? Determining and Communicating Diagnosis and Prognosis....................106
What Are Our Options? Establishing Goals....................125
What Will Help My Child and My Family? Fitting Care to Goals and Circumstances....................134
5 CARE AND CARING FROM DIAGNOSIS THROUGH DEATH AND BEREAVEMENT....................141
The Physical Dimensions of Care....................142
The Emotional and Psychological Dimensions of Care....................153
The Spiritual Dimensions of Care....................162
The Practical Dimensions of Care....................167
Grief and Bereavement Care....................171
6 PROVIDING, ORGANIZING, AND IMPROVING CARE....................180
Accountability and Quality....................181
The Challenges of Coordination and Continuity....................187
Health Care Professionals....................195
Organizations and Settings of Care....................203
Community and Regional Systems of Care....................224
Directions for Professionals and Institutions....................227
7 FINANCING OF PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES....................234
Who Pays for Palliative and End-of-Life Care for Children?....................236
How Physicians, Hospitals, and Other Providers Are Paid....................265
Managed Care and End-of-Life Care....................283
Directions for Policymakers and Insurers....................287
8 ETHICAL AND LEGAL ISSUES....................293
Types of Decisions....................295
Ethical Considerations....................302
Strategies for Preventing or Resolving Parent-Clinician and Other Conflicts About Clinical Care....................308
Legal Considerations....................318
Conclusion....................327
9 EDUCATING HEALTH CARE PROFESSIONALS....................328
Basics of Health Professions Education for Pediatric Palliative and End-of-Life Care....................330
Current Status of Professional Preparation in Palliative and End-of-Life Care for Children and Their Families....................334
Initiatives to Improve Education for Pediatric Palliative and End-of-Life Care....................339
Directions for Educators....................348
10 DIRECTIONS FOR RESEARCH....................350
Initiatives to Encourage Pediatric Research....................351
Directions for Future Research....................355
Challenges of Research on Palliative and End-of-Life Care for Children and Their Families....................385
Ethical and Legal Issues in Research Involving Children....................386
Conclusion....................391
REFERENCES APPENDICES A Study Origins and Activities....................445
B Prognostication Scores*....................449
C Assessing Health-Related Quality of Life in End-of-Life Care for Children and Adolescents....................476
D Cultural Dimensions of Care At Life's End for Children and Their Families....................509
E Bereavement Experiences After the Death of a Child....................553
F End-of-Life Care in Emergency Medical Services for Children....................580
G Education in Pediatric Palliative Care....................599
H Progress in Pediatric Palliative Care in New York State-A Demonstration Project....................638
I Committee Biographical Statements....................665
INDEX....................671

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