American Academy of Pediatrics (AAP), 8, 25, 90, 124, 134, 192, 193, 197, 199, 206, 207, 208, 214, 274, 275, 276, 278, 296 n.2, 299, 300, 313, 323 n.15, 326, 362, 387

American Association for Collegiate Nursing, 337

American Association of Colleges of Nursing, 347

American Association of Critical Care Nurses (AACCN), 198

American Association of Retired People, 263

American Board of Internal Medicine (ABIM), 335

American Board of Pediatrics (ABP), 196 n.5

American College of Physicians-American Society for Internal Medicine (ACP-ASIM), 310

American Medical Association (AMA), 195, 278, 280 n.36, 306 n.14, 336, 347

American Psychological Association (APA), 258, 337

American Society of Clinical Oncology (ASCO), 186-187

Anencephaly, 54, 81-82, 110, 294, 305, 316, 322

Aney, Christine, 180

Anorexia-cachexia syndrome, 146-147

Antibiotics, 39

Appropriate care, 75, 90-91, 307, 326-327.

See also Quality of care

Arizona, 237, 277

Art and music therapy, 122, 128, 135, 155-156, 164-165, 246

Assisted suicide/euthanasia, 149, 294, 301

Asthma, 48

Atelectasis, 44

Autism, 48

Autopsies and investigations, 55-56, 77, 124, 131, 152, 153, 167, 178, 278

Avila, Rosario, 21

Avila, Salvador, 1, 197

B

BadgerCare program, 260

Balanced Budget Act of 1997, 251, 266, 268

Benign neoplasms, 44.

See also Cancer

Bereavement.

See also Grief; Mourning

defined, 35

protective factors, 373

Bereavement care

for clinical caregivers, 226

education and training in, 337

in emergency departments, 5, 124, 174

insurance coverage, 13, 14, 241, 242, 246-247, 258

interventions, 175-179

National Association of Social Workers (NASW) guidelines, 124, 174

palliative care integrated with, 13, 210, 225, 226, 290-291

pathways of dying and, 154, 171-175

by pediatric care team, 5, 178-179, 230

perinatal death and, 366-368

providers, 200

recommendations, 11, 230-231, 291

research directions, 176, 366-368, 370-373

siblings, 177-178

support groups, 109, 167, 173, 176

working principles, 7

Best Pharmaceuticals for Children Act, 352

Beth-Israel Deaconess Hospital, 227

Birth asphyxia, 50

Birth defects. See Congenital anomalies and disorders

Blue Cross Blue Shield, 241, 242, 248, 265, 354

Bone and joint tumors, 61, 79-81

Borchart, Pam, 113

Boston Children’s Hospital, 68, 225, 354

Bowel problems, 146

Brain and central nervous system cancers, 58, 61

Brain death, 36-37, 74, 294, 305 n.12, 321, 369

Bula, Kathleen and James, 104

Bureau of Labor Statistics, 241, 242, 244

Burn injuries, deaths from, 57

C

California, 286, 340

Camps, 135, 156, 223-224, 335

Canada, end-of-life care in, 69, 70, 207

Canadian Pediatric Society, 207

Front Matter (R1-R22)

Summary (1-18)

1. Introduction (19-40)

2. Patterns of Childhood Death in America (41-71)

3. Pathways to a Child (72-103)

4. Communication, Goal Setting, and Care Planning (104-140)

5. Care and Caring From Diagnosis Through Death and Bereavement (141-179)

6. Providing, Organizing, and Improving Care (180-233)

7. Financing of Palliative and End-of-Life Care for Children and Their Families (234-292)

8. Ethical and Legal Issues (293-327)

9. Educating Health Care Professionals (328-349)

10. Directions for Research (350-391)

References (392-444)

Appendix A: Study Origins and Activities (445-448)

Appendix B: Prognostication Scores (449-475)

Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents (476-508)

Appendix D: Cultural Dimensions of Care At Life (509-552)

Appendix E: Bereavement Experiences After the Death of a Child (553-579)

Appendix F: End-of-Life Care in Emergency Medical Services for Children (580-598)

Appendix G: Education in Pediatric Palliative Care (599-637)

Appendix H: Progress in Pediatric Palliative Care in New York State--A Demonstration Project (638-664)

Appendix I: Committee Biographical Statements (665-670)

Index (671-690)