When Children Die: Improving Palliative and End-of-Life Care for Children and Their FamiliesInstitute of Medicine, Board on Health Sciences Policy, Committee on Palliative and End-of-Life Care for Children and Their Families National Academies Press, 9 gen 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. |
Sommario
| 1 | |
Introduction | 19 |
Patterns of Childhood Death in America | 41 |
Pathways to a Childs Death | 72 |
Communication Goal Setting and Care Planning | 104 |
Care and Caring from Diagnosis Through Death and Bereavement | 141 |
Providing Organizing and Improving Care | 180 |
Financing of Palliative and EndofLife Care for Children and Their Families | 234 |
Appendix A Study Origins and
Activities | 445 |
Appendix B Prognostication Scores | 449 |
Appendix C Assessing HealthRelated
Quality of Life in EndofLife
Care for Children and
Adolescents | 476 |
Appendix D Cultural Dimensions of
Care at Lifes End for
Children and Their Families | 509 |
Appendix E Bereavement Experiences
after the Death of a Child | 553 |
Appendix F EndofLife Care in
Emergency Medical
Services for Children | 580 |
Appendix G Education in Pediatric
Palliative Care | 599 |
Appendix H Progress in Pediatric
Palliative Care in New
York StateA
Demonstration Project | 638 |