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

by Field, Marilyn J.

• ISBN13: 9780309084376
• ISBN10: 0309084377
• Edition: 1st
• Format: Hardcover
• Copyright: 2003-01-01
• Publisher: NATL ACADEMY OF SCIENCE

Summary

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 exemplify "medicine with a heart." At worst, families' encounters with the health care system 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

Preface	xv
Acknowledgments	xvii
Reviewers	xix
Summary	1	(2)
Context and Challenges	3	(4)
Working Principles	7	(1)
Providing and Organizing Child- and Family-Centered Care	8	(3)
Financing	11	(3)
Legal and Ethical Issues	14	(1)
Education of Health Professionals	15	(2)
Directions for Research	17	(2)
Introduction	19	(22)
Problems and Challenges	21	(3)
Improving Palliative, End-of-Life, and Bereavement Care for Children and Their Families	24	(2)
Study Origins and Report Overview	26	(2)
Guiding Principles	28	(4)
Concepts and Definitions	32	(9)
Patterns of Childhood Death in America	41	(31)
Childhood Death in the Context of Improved Child Health	41	(8)
Infant, Fetal, and Perinatal Deaths	49	(7)
Mortality for Children Aged 1 to 4 and 5 to 9	56	(3)
Mortality for Children Aged 10 to 14 and 15 to 19	59	(2)
Gender, Socioeconomic, and Other Differences and Disparities in Child Mortality	61	(5)
Where Children Die	66	(4)
Implications	70	(2)
Pathways to a Child's Death	72	(32)
Trajectories of Dying	73	(3)
Illustrative Stories of Children and Their Families	76	(9)
Pathways of Care	85	(3)
What Do We Know About the Focus and Adequacy of Care for Children Who Die?	88	(14)
Implications	102	(2)
Communication, Goal Setting, and Care Planning	104	(37)
What Is Happening? Determining and Communicating Diagnosis and Prognosis	106	(19)
What Are Our Options? Establishing Goals	125	(9)
What Will Help My Child and My Family? Fitting Care to Goals and Circumstances	134	(7)
Care and Caring From Diagnosis Through Death and Bereavement	141	(39)
The Physical Dimensions of Care	142	(11)
The Emotional and Psychological Dimensions of Care	153	(9)
The Spiritual Dimensions of Care	162	(5)
The Practical Dimensions of Care	167	(4)
Grief and Bereavement Care	171	(9)
Providing, Organizing, and Improving Care	180	(54)
Accountability and Quality	181	(6)
The Challenges of Coordination and Continuity	187	(8)
Health Care Professionals	195	(8)
Organizations and Settings of Care	203	(21)
Community and Regional Systems of Care	224	(3)
Directions for Professionals and Institutions	227	(7)
Financing of Palliative and End-of-Life Care for Children and Their Families	234	(59)
Who Pays for Palliative and End-of-Life Care for Children?	236	(29)
How Physicians, Hospitals, and Other Providers Are Paid	265	(18)
Managed Care and End-of-Life Care	283	(4)
Directions for Policymakers and Insurers	287	(6)
Ethical and Legal Issues	293	(35)
Types of Decisions	295	(7)
Ethical Considerations	302	(6)
Strategies for Preventing or Resolving Parent--Clinician and Other Conflicts About Clinical Care	308	(10)
Legal Considerations	318	(9)
Conclusion	327	(1)
Educating Health Care Professionals	328	(22)
Basics of Health Professions Education for Pediatric Palliative and End-of-Life Care	330	(4)
Current Status of Professional Preparation in Palliative and End-of-Life Care for Children and Their Families	334	(5)
Initiatives to Improve Education for Pediatric Palliative and End-of-Life Care	339	(9)
Directions for Educators	348	(2)
Directions for Research	350	(42)
Initiatives to Encourage Pediatric Research	351	(4)
Directions for Future Research	355	(30)
Challenges of Research on Palliative and End-of-Life Care for Children and Their Families	385	(1)
Ethical and Legal Issues in Research Involving Children	386	(5)
Conclusion	391	(1)
REFERENCES	392	(279)
APPENDICES
A Study Origins and Activities	445	(4)
B Prognostication Scores	449	(27)
C Assessing Health-Related Quality of Life in End-of-Life Care for Children and Adolescents	476	(33)
D Cultural Dimensions of Care At Life's End for Children and Their Families	509	(44)
E Bereavement Experiences After the Death of a Child	553	(27)
F End-of-Life Care in Emergency Medical Services for Children	580	(19)
G Education in Pediatric Palliative Care	599	(39)
H Progress in Pediatric Palliative Care in New York State--A Demonstration Project	638	(27)
I Committee Biographical Statements	665	(6)
Index	671