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

Copertina anteriore
National Academies Press, 9 feb 2003 - 712 pagine

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.

 

Sommario

PREFACE xv
SUMMARY 1
Working Principles for Pediatric Palliative EndofLife
INTRODUCTION 19
PATTERNS OF CHILDHOOD DEATH IN AMERICA 41
CONTENTS
4
5
CONTENTS xiii
REFERENCES 392
Tables
APPENDICES
Assessing HealthRelated Quality of Life in EndofLife Care
Cultural Dimensions of Care At Lifes End for Children
E Bereavement Experiences After the Death of a Child 553
F EndofLife Care in Emergency Medical Services for Children 580

6
7
CONTENTS xi
EDUCATING HEALTH CARE PROFESSIONALS 328
DIRECTIONS FOR RESEARCH 350
G Education in Pediatric Palliative Care 599
H Progress in Pediatric Palliative Care in New York State
Committee Biographical Statements 665
INDEX 671

Altre edizioni - Visualizza tutto

When Children Die: Improving Palliative and End-of-Life Care for Children ...
Institute of Medicine,Board on Health Sciences Policy,Committee on Palliative and End-of-Life Care for Children and Their Families
Anteprima limitata - 2003
When Children Die: Improving Palliative and End-of-Life Care for Children ...
Committee on Palliative and End-of-Life Care for Children and Their Families
Anteprima non disponibile - 2003

Parole e frasi comuni

accessed adolescents adults American appropriate assessment benefits bereavement brain death cancer caregivers Center Chapter child and family child’s death children and families children with life-threatening children’s hospitals clinical clinicians committee communication coverage cultural cystic fibrosis decisions diagnosis discussion disease distress emergency department emergency medical services emotional ethical evaluation example experience family members family’s goals grief groups guidelines health care professionals health plans home health hospice HRQL infants inpatient Institute intensive care unit interventions involved issues Journal limited mechanical ventilation Medicaid medical problems Medicare Medicine ment mortality NACHRI needs neonatal nurses Oncology Online organizations outcomes pain palliative and end-of-life parents patients and families payment pediatric palliative pediatricians percent physical physicians policies potential practice prognosis programs protocols rates require siblings social workers spiritual strategies symptom management telemedicine therapies tion treatment Varni

Informazioni bibliografiche

TitoloWhen Children Die: Improving Palliative and End-of-Life Care for Children and Their Families
AutoriInstitute of Medicine, Board on Health Sciences Policy, Committee on Palliative and End-of-Life Care for Children and Their Families
CuratoriRichard E. Behrman, Marilyn J. Field
EditoreNational Academies Press, 2003
ISBN0309084377, 9780309084376
Lunghezza712 pagine
  
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