INDEX*
A
Abortion, induced, 49, 81, 294, 367
Abortion, spontaneous, 49
A-byss’, 164-165
Access to and availability of palliative care
geographic barriers, 23, 139, 202
home health care, 215
hospice care, 133, 204, 207-210, 215, 254-255
inpatient care, 204, 207-210, 271-273
payment systems and, 5-6, 12, 23, 235, 238, 253, 260, 265, 291
racial and ethnic disparities, 7, 23, 64
socioeconomic differences in, 6, 168, 170
Accidents. See Unintentional injuries
Accreditation, licensure, and professional standards, 16, 163, 186, 200, 307, 312, 338, 339-340, 345, 349, 364
Adolescents
cancer, 44-45, 60, 61, 72, 79-81
communication of bad news to, 120 n.1
death rates and numbers, 59, 60, 63-64, 66
defined, 32
leading causes of death, 43, 44-45, 60, 61, 63-64, 66
psychological and emotional care, 64, 139, 153-154, 157-158
school reentry, 79-80
sexual issues, 158
treatment decisionmaking, 79-81, 139, 157, 295, 296, 318, 323-325
Adults compared to children
cardiopulmonary resuscitation, 316-317
decisionmaking, 130, 134, 139, 295, 296
hospice care, 216
legal status, 10-11, 130, 134, 139, 190, 216, 323-325
mortality rates by cause of death, 43-47, 58
palliative care, 3, 4-7, 21, 35, 331
Advance care planning, 6, 87, 129-133, 248, 310
Advance directives, 6, 22, 130, 140, 183-184, 185 n.2, 307, 317
Advanced Illness Coordinated Care model, 248
Agency for Healthcare Research and Quality (AHRQ), 265 n.24
Aid to Families with Dependent Children (AFDC), 249
Alabama, 62
American Academy of Hospice and Palliative Medicine, 25, 329
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
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
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
Canada, end-of-life care in, 69, 70, 207
Canadian Pediatric Society, 207
Cancer
adolescents’ deaths from, 44-45, 60, 61, 72, 79-81
adult deaths compared, 58
children’s deaths from, 5, 44, 46, 48, 56, 57-58
financing of care, 261
life-sustaining treatment decisions, 96, 296
models for care, 86
optimistic assessments, 101
pain and symptom management, 90, 91, 92, 94, 97, 144, 145, 185-187, 208
pediatric care centers, 206, 355-356
prognostic assessment, 112, 121
relapsed, 112, 113, 126, 130, 296
site of children’s deaths from, 68
trajectory of dying, 79-81
treatment options and goal setting, 96, 125
Cardiopulmonary resuscitation, 38-39
Care teams. See Interdisciplinary care teams;
Multidisciplinary care teams;
Pediatric care teams
Caricel (Hospice of Northern Virginia), 132 n.4
Case management programs, 188, 193, 224, 240, 247-248, 251 n.13, 260, 287
Center for Advanced Illness Coordinated Care, 354-355
Center to Advance Palliative Care, 89 n.2, 272 n.30
Center to Improve Care of the Dying, 183
Centers for Disease Control and Prevention, 265 n.24
Centers for Medicare and Medicaid Services, 13, 14, 25, 215, 265 n.24, 268, 291, 354
Cerebral palsy, 47
Chaplains/pastoral counselors, 162-166, 167, 174, 200, 246, 275, 314, 337, 338
Charitable Leadership Foundation, 354
Child Abuse Amendments of 1984, 326
Child- and family-centered care, 8-11, 190-193, 228
Childhood.
See also Death in childhood periods of, 32
Child-life specialists, 199-200, 246, 275, 338
Children.
See also Adolescents; Infants; Siblings
abuse and neglect, 55-56, 59, 174, 319, 326
brain death criteria, 36-37, 74, 294, 305 n.12, 321
communication with, 92, 114, 120-123, 133, 138-139, 143-144, 155-156, 166, 178, 194, 199
death rates and numbers, 3-4, 41, 42, 49, 56
defined, 32
diagnosis of fatal and life-threatening conditions, 110-111
emotional and psychological care, 75, 92, 94, 102, 135, 136, 153, 154-158, 224
end-of-life discussions with, 92, 121-122, 138-139, 176-177
functional status assessment, 137
involvement in treatment decisionmaking, 10-11, 79-81, 123, 130, 133-134, 138-139, 155, 190-191, 294, 296, 376-377
leading causes of death, 5, 43, 44, 57-59
normal response to illness, 154
orphans and wards of the state, 69, 326, 387, 389
as research participants, 134, 351, 386-390
seat belts and safety seats, 57
with special health care needs, 47-49, 82-84, 221, 261
spiritual care for, 136, 164-166
training and education in self-care, 214
U.S. population, 41
Children’s Bridges, 132 n.4
Children’s Health Act, 351, 389
Children’s Hospice International, 25, 215
Children’s Hospital and Health Center of San Diego, 354
Children’s Hospital and Regional Medical Center of Seattle, 247-248, 271, 354
Children’s Hospital at The Cleveland Clinic, 193
Children’s Hospital of Philadelphia, 354
Children’s Hospital Wisconsin, 193
Children’s International Project on Palliative/Hospice Service, 215, 329
Children’s Mercy Hospital, Kansas City, 354
Children’s Oncology Group (COG), 26, 197, 356-357, 381
Choking and suffocation, 57
Christus Santa Rosa, 210
Chronic lower respiratory diseases, 44-45
City of Hope National Medical Center, 347
Classification of congenital and chronic health conditions, 271
Clinical trials, 264-265
College of Emergency Medicine, 124
Comfort care, 34-35, 185 n.2, 221-222, 318
Communication
with adolescents, 120 n.1
of bad news, 99-103, 113-125, 199, 345, 384
with children, 92, 114, 120-123, 133, 138-139, 143-144, 155-156, 166, 178, 194, 199
and conflict resolution, 184, 310, 314-315
of diagnosis, 4-5, 75, 105, 108-110, 118
in emergency situations, 100, 113-114, 123-124, 199
ethnocultural considerations in, 121
example, 118-119
importance for planning care, 8, 105-106
link between parents and care team, 199
measurement of skills in, 101
obstacles to, 116-117
organ donation requests, 101, 125, 167
with parents, 2, 10, 114-120, 123-125, 150, 159-160, 384
preparation for, 116
principles, 115-117
of prognosis, 4-5, 75, 110-113, 118
recommendations, 138-139
research directions, 229-230, 376-377
with siblings, 178
of sudden death without forewarning, 123-125
and symptom management, 143-144, 150
training of health professionals, 100, 101, 194, 328, 332-333, 334, 340, 342, 345
Community and regional systems of care
delivery, 224-227, 232-233, 378-379
objectives, 224-226
research directions on, 378-379
telemedicine, 10, 110, 214, 226-227, 233, 244, 256
Compassionate Friends, 176
CompassionNet, 248
Complementary medicine, 365-366
Complex chronic conditions, 52, 68, 69, 71, 96-97, 112, 193
Congenital anomalies and disorders
deaths from, 5, 43, 44-45, 46, 50, 52-55, 56, 57, 60, 74, 75, 81-82, 87
definitions, 52-53
detection, 53
heart disease, 32 n.1, 44, 46, 54, 69-70
and life-sustaining interventions, 99, 301, 305-306
prognosis, 110
site of death, 69-70
treatment options and goal setting, 125
Consultative services
with hospices, 10, 95, 132-133, 214, 217, 220, 232, 243-244
insurance coverage, 226, 243-244, 278, 280, 281, 290, 311
for palliative care, 10, 95, 102, 129, 209, 210, 232, 248, 290, 354
physician-parent, 309-310, 311
recommendations, 232
research initiatives on, 354
Continuous Quality Improvement (CQI), 182-183, 375 n.5
Coordination and continuity of care.
See also Delivery of care; Quality of care
advanced illness care, 193-195
challenges, 2, 3, 5, 78-79, 187-190
child- and family-centered care, 8-11, 190-193, 228
community and regional systems of care and, 224-225
definitions, 189
financing of care and, 12, 23, 168, 188, 239, 241-242, 247-248, 261, 266, 284-286, 287
geographic barriers, 193
hospice care and, 190
hospital role, 225-226
integrational structures or processes, 185, 188
measure of, 184
«medical home» concept, 9, 189, 192-193, 224
Pediatric Advanced Illness Care Coordination (PAICC) program, 193-195, 354, 377
recommendations, 9-10, 231-232
and satisfaction with care, 189
sourcebook on model programs, 183-184
Critical incident stress management, 369-370
Cultural considerations, 11, 23, 40, 77-78, 121, 127, 132, 133-134, 138, 295, 296, 302, 340
Custodial care, 279
Cystic fibrosis, 32 n.1, 38, 69, 97-98, 223, 224
D
Dana-Farber Cancer Center, 68, 225, 354
Death in childhood.
See also Mortality rates; Pathways of dying
adolescents, 59-61
adult patterns contrasted, 43-47, 58
ages1 to 4 and 5 to 9, 42, 56-59
cultural perceptions of, 40
from curable, but life-threatening condition, 73, 74, 75, 78-79
declaration of, 36-37, 74, 369
extended illness preceding, 72, 171-173
good vs. bad, 40, 84-85, 95, 132
infant, fetal, and perinatal, 49-56
investigations and autopsies, 55-56, 77, 124, 152, 153, 167, 178, 278
leading causes of, 4-5, 38, 43, 44-47, 49-56, 57-59, 60-61, 74, 75, 78, 81-82, 87
percentage of U.S. population, 41
practical dimensions of care after, 125, 168
progressive condition with intermittent crises, 74, 75, 82-84, 87-88, 112
public health advances and, 41-49
reporting to medical examiner, 131
site of, 66, 68-70, 80-81, 130-131, 151, 203-204, 224
sudden and unexpected, 1, 42, 72, 74, 77-78, 123-125, 152, 154, 172, 173-175, 368-370
Decisions about care.
See also Ethical considerations; Parent-clinician conflict resolution; Treatment decisionmaking and goal setting
ethical and legal criteria in, 300-302
Decisions Near the End of Life program, 347
Delaware, 286
Delivery of care.
See also Coordination and continuity of care; Quality of care
community and regional systems, 224-227, 232-233, 378-379
focus and adequacy of, 88-102
organizations and settings, 203-224
outcome and performance measures, 376
professionals, 195-203
recommendations, 229-232, 373-379
Department of Defense (DoD), 265, n.24 270
Department of Health and Human Services (HHS), 47, 326, 389
Department of Veterans Affairs (VA), 265 n.24, 346
Diagnosis of life-threatening and fatal conditions
aspects in children, 106-107
communication of, 4-5, 75, 105, 108-110, 118
information resources for families, 105, 108-110
prenatal, 25, 107, 172, 173, 217, 366-368
support for children and families while waiting for, 107-108
uncertainty in, 108
Discharge planning procedures, 188, 224
Disease management programs, 188, 193
Disease-modifying interventions, limiting, 96-99
District of Columbia, 62
Do-not-resuscitate (DNR) orders, 92, 96, 130-131, 207, 210, 221, 294, 296, 299-300, 312, 322, 325, 326, 336, 346
Down syndrome, 37, 54, 133, 316, 326
Drugs. See Prescription drugs
Duchenne muscular dystrophy, 54
Dying.
See also Death in childhood; Pathways of dying
defined, 36
Dysphagia, 147
E
Education Development Center of Boston, 24, 354
Education of health care professionals
accreditation, licensure, and professional standards and, 16, 338, 339-340, 345, 349
in communication and interpersonal skills, 100, 101, 194, 328, 332-333, 334, 340, 342, 345, 384
continuing medical education, 25, 333, 334, 347
on cultural dimensions of care, 340
on ethical and professional principles, 307-308, 312, 314, 315-316, 333, 336, 341, 346, 347
faculty development, 346-347
graduate medical school, 330, 336, 340
hospice and inpatient palliative care experiences, 216, 328-329, 333, 334, 335, 337, 345-346
improvement initiatives, 339-347
integration and illustration, 341
mentors and role models, 344, 346
nursing, social work, and others, 198, 329, 336-338, 346, 347
organizational knowledge and skills, 231, 333
patients and families as teachers, 344-347, 383
on quality assessment and improvement, 340
recommendations, 15-16, 233, 348-349
research directions for, 348-349, 382-385
residency programs, 2, 16, 199, 336, 339, 340, 342-343, 344, 346, 349
scientific and clinical knowledge and skills, 231, 332, 341, 384-385
simulated or standardized patients or parents, 345, 383
teamwork preparation, 203, 340, 342, 384
techniques and tools, 342-344
textbooks and educational materials, 25, 198, 329, 337, 338-339, 341, 347, 369-370
undergraduate medical school, 330, 334-335
Education of Physicians on End-of-Life Care (EPEC) Project, 347
Edward’s syndrome, 54
Emancipated or mature minors, 323, 325
Emergency departments, services, and personnel.
See also Neonatal intensive care units; Pediatric intensive care units
bereavement care by, 5, 124, 174
child deaths in, 68, 69, 70, 207
communication of bad news, 100, 113-114, 124, 199, 345
education requirements, 343
psychological support for, 370
research directions, 351, 353-354, 368-370
triage protocols, 304-305
Emergency Treatment and Active Labor Act, 305, 322
Emotional and psychological care
of adolescents, 64, 139, 153-154, 157-158
for children who are ill, 75, 92, 94, 102, 107-108, 135, 136, 153, 154-158, 224
dimensions, 153-154
for families, 107-108, 136-137, 139-140, 154, 158-162, 172, 369-370
pain and symptom management, 94, 145, 199
for parents, 88, 154, 159-160, 258, 363
psychotherapy, 155-156
school attendance, 156
for siblings, 64, 161-162, 199, 258, 363
writing therapy, 155-156, 164-165, 377
Employee assistance programs, 170
Employee Retirement Income Security Act of 1974, 240
End of life
defined, 36
discussions with children, 92, 121-122, 138-139, 176-177
End-of-life care.
See also Hospice care for children; Palliative care for children
child patient’s involvement in decisions about, 138-139
decisionmaking about, 126, 129-131, 138-139
delivery of, 88
managed care and, 283-286
pain and symptom management, 148-149, 301
physician involvement in, 95, 101-102
quality improvement projects, 183-184
sedation controversy, 149, 301
working principles, 7
End-of-Life Nursing Education Consortium, 347
End-stage renal disease, 223, 266 n.25, 269
England, hospice care for children, 69, 92, 220, 264
Enteritis with diarrhea, 43
Essential Care (Center for Hospice and Palliative Care, Buffalo), 132 n.4
Ethical considerations
abusive parents and other caretakers, 59, 174, 294, 321
adolescent decisionmaking, 318, 323, 325
clinicians’ core obligations, 303-304
at collective level, 304-307
double-effect decisionmaking, 301, 341
education in, 307-308, 312, 314, 315-316, 333, 336, 341, 346, 347
«futile» treatment, 305-306, 315
at individual level, 302-304
in practice, 307-308
in rationing of care, 302, 304-305, 318, 341
in research involving children, 134, 351, 386-390
screening for conditions with no effective treatment, 302
sedation controversy, 149, 301
in spiritual matters, 165-166
Ethics committees, 293, 309, 312-314, 322
Ethnocultural differences.
See also Cultural considerations
in access to health care, 7, 23, 64
and communication of bad news, 121
conflicts or misunderstandings, 127, 132
education of health professionals on, 340
in perceptions of death, 40
special problems of immigrants, 23, 77-78
in treatment decisionmaking, 127, 132, 133-134, 138, 296, 302
Excellus, 248
F
Faith communities, support from, 171, 264.
See also Chaplains/pastoral counselors; Spiritual careFamilies
bereavement support groups, 109, 167, 173, 176
burdens on, 6, 22-23, 72, 82-84, 139-140, 143, 187-188, 211, 247, 262-263, 268-269, 279, 288, 306
defined, 33
emotional care for, 107-108, 136-137, 139-140, 154, 158-162, 172, 369-370
navigation of health care system, 108
physical care for, 142
presence during resuscitation, 151
respite care for, 154, 156, 170, 171, 220-221, 241, 247, 258, 263, 272
spiritual care for, 136-137, 166-167, 173
support network, 75, 139-140, 158-159, 162
as teachers, 344-347
training of caregivers, 188, 191, 214, 263, 269, 279
Family practitioners, 195-196, 340
Family Voices, 192
Fatal medical condition, 37
Federal Tax Equity and Fiscal Responsibility Act of 1982, 252 n.14
Federation of State Medical Boards (FSMB), 345
Feeding tubes, 222.
See also Hydration and nutrition, artificial
Fetuses, 36 n.3, 49, 50, 51, 54, 65
Feudtner, Chris, 133
Financing of care.
See also Health insurance coverage, private; Medicaid/Medicare coverage; Payment/reimbursement for health care
access issues, 5-6, 235, 238, 253
bereavement services, 13, 241, 242, 246-247, 258
clinical trials, 264-265
community and regional systems, 260, 261
consultative services, 226, 290, 311
and coordination and continuity of care, 12, 168, 188, 239, 241-242, 247-248, 261, 266, 284-286, 287
coverage variability, 11-12, 238-239
and decisions about care, 295, 301-302, 382
family out-of-pocket payments and caregiving, 262-263
home health care, 214, 241-244, 255-256, 266, 290, 381
hospice care, 12-13, 34, 48, 112-113, 132-133, 170, 210, 217, 218-219, 220, 240-241, 242, 254-255, 260, 263-264, 272, 280, 281, 282-283, 284, 289-290, 381
negative aspects of current systems, 12-13, 235, 288-292
philanthropy and volunteer funding and services, 220, 264, 273
positive aspects of current systems, 287
recommendations, 12-13, 289-291
research directions, 26, 291-292, 379-382
respite care, 220-221
safety net providers, 12, 77-78, 206, 238, 263-264, 267, 268
sources of payment, 236-238
State Children’s Health Insurance Program, 236, 238, 260, 275, 278
telemedicine applications, 226
Title V Maternal and Child Health Block Grants, 168, 236, 256, 261-262, 286, 287
Food and Drug Administration (FDA), 246 n.7, 351-352, 389-390
Food and Drug Administration Modernization Act of 1997, 351
Foundation for the National Institutes of Health, 353
G
Gender differences, in cause of death, 59, 63-64
Gene therapy, 38
General Accounting Office (GAO), 277, 353
Genetic counseling, 107
Geographic differences
in coordination and continuity of care, 193
in health insurance coverage, 236-237, 238
mortality rates by cause of death, 62-63
George Marks Children’s House, 220
George Washington University, 345
Georgia, 256
Germ cell cancers, 61
Goals and options for treatment. See Treatment decisionmaking and goal setting
Grief.
See also Bereavement care; Mourning
anticipatory, 35, 159, 172-173
care, 171-175
defined, 35
in health professionals, 35-36
pathways of, 72
preparing for death, 173
sudden and unexpected death and, 64, 173-175
Guidelines. See Practice guidelines and protocols
Gunshot injuries and deaths, 59, 61, 66
H
Hackensack University Medical Center, 193
Harvard University Medical School, 315, 344, 346
Health Care Financing Administration (HCFA), 251, 265 n.24, 268, 271 n.28, 272, 286
Health care professionals.
See also Education of health care professionals; Pediatric care teams; specific types of providers
diagnostic and therapeutic personnel, 200
emotional and psychological support for, 226, 332-333
family support by, 369-370
mix of providers, 195
pediatric subspecialties in, 196-197
Health care safety net, 263-264
Health insurance coverage, private.
See also Financing of care; Payment/reimbursement for health care
bereavement services, 13, 14, 241, 242, 246-247
for children, 236-238
flexible spending accounts, 240
geographic differences in, 236-237, 238
home health care, 241-244
hospice care, 2, 34, 132-133, 240-241, 242-243
innovations in, 247-248
inpatient hospital care, 244
for practical dimensions of care, 167-168, 170
prescription drugs (outpatient), 244-246
psychosocial, respite, and other services, 200, 246-247
reimbursement methods, 268
traditional focus, 234
Health insuring organizations, 251 n.13
Health maintenance organizations (HMOs), 168, 241, 245, 251 n.13, 276, 284
Heart disease, 5, 32 n.1, 44, 46, 54, 56, 60, 69-70
Heartsongs, 155
Heyl-Martineau, Tina, 72, 129, 328
HIV/AIDS, 45, 66, 69, 120 n.1, 158, 160, 223, 224, 351
Home, as site of death, 68-69, 71, 80-81, 130-131, 151-152
Home health care
AAP guidelines, 214
access to, 215
financing of, 214, 241-244, 255-256, 266, 290, 381
frequency, duration, and type of services, 214
hospice services, 69, 97-98, 132, 197-198, 204, 210, 211, 214-220, 240-241, 248, 254-255, 281, 335
information resources, 110
pain and symptom management at, 149, 211, 214
physician services, 279
providers and caseloads, 211, 214
Homicides
adolescent deaths, 60, 61, 63-64, 66
communication about, 125
failure to provide medical care as, 320
psychological impacts of, 64, 174
racial differences, 65
regional differences in rates, 62-63
Hope, communication of, 121, 159
Hope Hospice, 227
Hospice care for children
adult care compared, 216
availability and quality of, 133, 204, 207-210, 215, 217, 254-255
barriers to use, 12, 217, 268-269, 289-290
categories of, 282
consultation services, 10, 95, 132-133, 214, 217, 220, 232, 243-244
and continuity of care, 190
defined, 34-35
demonstration projects, 259
education and training programs, 333, 334, 335, 337, 345-346
elements and focus, 215-220
emotional care for workers, 216, 333
financing of, 12-13, 34, 48, 112-113, 132-133, 170, 210, 217, 218-219, 220, 240-241, 242, 254-255, 260, 263-264, 272, 280, 281, 282-283, 284, 289-291, 381
first program, 215
home care services, 69, 97-98, 132, 197-198, 204, 210, 211, 214-220, 240-241, 248, 254-255, 281, 335
licensure restrictions, 307
Medicaid/Medicare eligibility, 2, 34, 48, 112-113, 131, 210, 211, 219-220, 254-255, 289
physician services, 279
potential beneficiaries of, 48
for practical dimensions of care, 170
recommendations, 12-13, 290-291
residential services, 69, 170, 220-221
telemedicine applications, 227
volunteer activities, 335
Hospice of the Florida Suncoast, 220
Hospitals.
See also Inpatient care
accreditation standards, 163
compassionate nondischarge policies, 272
coordination role, 225-226
grief support for families, 11, 173, 230-231
lengths of stay, 69-70, 268-269
payment/reimbursement methods, 267-273
Hostetler-Lelaulu, Susan, 145
Hydration and nutrition, artificial, 39, 143, 298, 299
Hynan, Michael, 126
I
Idaho, 277
Illinois, 62
Infants.
See also Prematurity/low birth weight
death rates and numbers, 3, 42, 43, 44, 49, 51, 62, 63, 65
defined, 32
leading causes of death, 43, 44, 49-56
pain management issues, 90, 94-95, 207, 331
rare, fatal disorders, 22, 70-71
risk factors for, 65
symptom measurement in, 363
terminology related to, 50
Infections, infant deaths from, 49, 55
Influenza. See Pneumonia and influenza
Information resources for families, 10, 105, 108-110, 133, 140, 231-232, 233
Informed consent documents, 119
Initiative for Pediatric Palliative Care, 24-25, 347
Injuries.
See also Intentional injuries; Unintentional injuries
and emergency medical services, 70
mortality rates from, 5
risk factors for mortality from, 66, 67, 71
site of, 69
Innovation in End-of-Life Care, 184
Inpatient care.
See also Hospitals; Neonatal intensive care units; Pediatric intensive care units
availability and quality of pediatric palliative care, 204-210
children’s hospitals and related institutions, 24, 69, 85, 205-207, 225-226, 268, 269-271
consultative services, 10, 226, 232
financing of, 244, 256, 271-273
follow-up or crisis care, 204
general hospitals, 204-205
palliative care and hospice programs, 85, 207-210, 212-213, 271-273
questions about, 212-213
Institute for Ethics, 347
Institute for Healthcare Improvement, 183
Insurance. See Financing of care;
Health insurance coverage, private;
Medicaid/Medicare coverage;
Payment/reimbursement for health care
Intentional injuries.
See also Homicides; Suicides
adolescents’ deaths from, 61
children’s deaths from, 43, 46, 59
Interdisciplinary care teams, 201, 377-378.
See also Pediatric care teams
International Classification of Diseases, 271
Internet-based support and information, 10, 109, 140, 152, 176, 184, 227, 341, 370-371
Intrauterine hypoxia, 49-50
Intraventricular hemorrhage, 55
Iowa, 270
J
Johns Hopkins Children’s Center, 354
Joint Commission on the Accreditation of Healthcare Organizations (JCAHO), 186, 312
K
Kansas, 227
Kentucky, 259
L
Learning disorders, 48
Leukemia, 54, 58, 61, 94, 110, 130, 133, 324
Legal issues.
See also Ethical considerations; Treatment decisionmaking and goal setting
and cultural sensitivity, 295
emancipated or mature minors, 323, 325
newborns with severe handicap or extreme prematurity, 326-327
parent-child conflicts, 323-325
parent-clinician conflicts, 295-296, 318-322
parent-parent conflicts, 325
in site of death, 130-131, 151-152
wards of the state, 326
Life expectancy at birth, 42
Life Institute, 248
Life-limiting conditions, 37 n.4
Life support.
See also Life-sustaining treatment
defined, 38-39
ethical context for, 298, 299, 300, 305, 307
withdrawal of, 98, 149-151, 294, 322, 369
Life-sustaining treatment
appropriateness of, 75-76
clinicians’ attitudes about, 99, 297-298, 307-308
decisions about, 130-131, 295, 298-300, 309, 315
defined, 38-49
limiting, 96-99, 102, 130-131, 135
Life-threatening conditions, 37, 146-147
Litigation
conflicts about care and, 317-318
insistence on treatment, 321-322
refusal of treatment, 319-321
Living will, 325
Low birth weight. See Prematurity/low birth weight
Lucile Packard Children’s Hospital, 344, 354
M
Madigan Army Medical Center, 25
Maine, 62
Make-a-Wish Foundation, 154, 264
Managed care
commercial organizations, 251
and end-of-life care, 283-286
home hospice care coverage, 241
implications of cost control techniques, 283-285, 287
Medicaid options, 193, 251, 257, 258, 269, 285-286, 287
payment/reimbursement methods, 267, 274-275
and physician providers of pediatric care, 196, 202
and practical dimensions of care, 168
prescription drug coverage, 257
provider networks, 284-285, 288
shifting financial risk, 267, 285
types of providers, 251 n.13
utilization review, 257, 283-284
Marital stress and divorce, 160
Maryland, 62, 236-237, 270, 277, 286
Maternal and Child Health Bureau, 47, 124, 174, 192, 236, 261
Meals on Wheels, 171
Mechanical ventilation, 38-39, 93, 97, 150, 297, 298, 299, 300, 321, 326, 363
Medicaid/Medicare coverage
and access problems, 253, 254-255, 277-278
bereavement services, 258
children enrolled in, 237, 238, 262
claims administration, 279-281
for clinical trials, 265
of consultations and team conferences, 243-244, 278, 280
Current Beneficiary Survey, 235 n.1
early periodic screening, detection, and treatment (EPSDT) services, 250-251, 252-253, 254, 255-256, 258, 280-281, 289, 379
End-Stage Renal Disease program, 266 n.25, 269
freedom-of-choice waivers, 251
home health care, 255-256, 381
hospice benefit, 2, 12, 34, 48, 112-113, 131, 163, 200, 211, 219-220, 234, 240, 254-255, 282-283, 289-290
inpatient hospital care, 256
and managed care plans, 193, 251, 257, 258, 269, 285-286, 287
«medically needy» option, 249, 258
mental health services, 257-258
physician acceptance of patients, 253, 277-278
of practical dimensions of care, 168
prescription drugs (outpatient), 256-258
prospective payment system, 266-268, 381
reimbursement issues, 253, 266-268, 271, 275, 276, 277, 279-280, 282-283, 289-90
respite care, 258
scope of, 226, 234, 236, 248-253
Section 1915(c) waivers (Katie Beckett programs), 251-252
telemedicine services, 226
Medical examiner, 167
«Medical home» concept, 9, 189, 192-193, 224
Medical information systems, 188
Medical power-of-attorney documents, 130, 325
Meier, Diane, 273
Memorials, 224
Mental Health Parity Act of 1996, 247
Mental health services
for child or adolescent, 153-154
conflict resolution about treatment decisions, 309-310
education and training, 329, 337
financing of, 246-247, 257-258, 275, 281
providers for palliative care, 199-200
psychosocial assessment of child and family, 136-137
Mental retardation and developmental disabilities, 48, 82-84, 221, 257-258, 316
Michigan State University, 227
Minnesota, 237
Mississippi, 62
Missouri, 277
Montana, 248
Mortality rates.
See also individual stages of childhood
by age and leading cause, 3-5, 43-47, 48, 52, 59, 60, 62-64, 66, 67
data sets, 62 n.6
ethnocultural differences, 64-66, 67
gender differences, 63-64
regional disparities in, 62-63
socioeconomic differences, 64-66, 71
Mothers in Sympathy and Support (MISS), 176
Motor-vehicle-related accidents
fatalities, 57, 60-61, 62, 63, 66
risk factors for, 61, 62, 63, 66
Mouth problems, 147
Mt. Sinai School of Medicine, 89 n.2, 272 n.30, 273
Multidisciplinary care teams, 201.
See also Pediatric care teams
Muscular dystrophy, 69, 75, 87-88, 118-119, 134-135, 155, 298
N
Nathan Cummings Foundation, 24, 354
National Association of Children’s Hospitals and Related Institutions (NACHRI), 199, 205, 208, 270, 271
National Association of Social Workers (NASW), 124, 174
National Board of Medical Examiners, 340, 345
National Cancer Institute (NCI), 26, 57-58, 112, 355-356, 357, 389
National Center for Complementary and Alternative Medicine (NCCAM), 365 n.3
National Council of Hospice and Palliative Professionals, 337
National Hospice and Palliative Care Organization (NHPCO), 25, 166, 215, 329, 337
National Institute of Child Health and Development (NICHD), 353, 357
National Institute of Nursing Research (NINR), 26, 378
National Institute of Mental Health, 353
National Institutes of Health (NIH), 17, 265 n.24, 351-352, 353, 355, 356
National Pediatric Trauma Registry, 69
Nausea and vomiting, 146
Nebraska, 254
Necrotizing enterocolitis, 55
Neonatal intensive care units (NICUs), 71, 94, 99, 113, 206, 207, 208, 209-210, 217
Neonatal Research Network, 357
Neonates
defined, 32
diagnosis-related groups (DRGs), 270
drug studies, 353
pain management in, 362
resuscitation, 277
site of death, 68-69
Neoplasms. See Cancer
Neurodegenerative disorders, 38, 69, 92, 98-99, 125, 144-145, 261, 287, 298
New Hampshire, 254
New Jersey, 277
New York, 259
Non-Hodgkin’s lymphoma, 61
Northwestern Memorial Hospital, 219 n.10
Nurse practitioners, 196, 275, 279, 281
Nurses, 113, 135, 159, 197-198, 202, 209, 211, 216, 224, 258, 273, 297, 329, 338, 346, 347
O
Office of Pediatric Therapeutics, 353
Office of Personnel Management, 241
Omnibus Budget Reconciliation Act of 1990, 254
Oncology wards, as site of death, 68
On-Lok Senior Health Services, 25, 183
Open Society Institute, 24, 26, 89 n.2, 228, 354
Organ donation, 37, 101, 125, 167, 345, 369
Organ and bone marrow transplants, 38, 69-70, 96, 112, 130
P
Pain.
See also Symptoms and symptom management
assessment and management, 5, 22, 26, 102, 114, 143, 144-145, 148-149, 185-186, 199, 208, 226, 289, 331, 335, 361-362, 364
cancer, 90, 91, 92, 94, 97, 144, 145, 185-187, 208
drug interventions, 142, 245 n.6
home care, 88 n.1
neurodegenerative disorders, 92
parental assessment of, 93-94
perception in infants and children, 90, 94-95, 207, 331, 362
practice guidelines and protocols, 9, 145, 185-186, 226, 228, 229-230
psychological interventions, 94, 145, 199, 365-366
recommendations, 9, 229-230, 331, 361-362, 364, 365-366
research strategy, 18, 26, 331, 361-362, 364, 365-366
strategy of pain control advocates, 228
treatment- and procedure-related, 8, 94, 144, 295, 363
World Health Organization (WHO) guidelines, 90, 94
Palliative Care Assessment Tool, 340
Palliative care for children.
See also Emotional and psychological care; Financing of care; Physical care; Recommendations; Symptoms and symptom management
access to, 5-6, 7, 12, 64, 133, 139, 168, 170, 202, 204, 207-210, 215, 238, 260, 291
accountability and quality, 181-187
barriers to considering, 85, 102-103, 131-133, 139
bereavement care integrated with, 13, 210, 225, 226, 290-292
consultative services, 10, 95, 102, 129, 209, 210, 232, 248, 290
demonstration projects, 25, 183, 215, 252-253, 259, 291, 354
education in, 216, 328-329, 333, 334, 335, 337, 345-346
elements and essential characteristics of, 8, 20, 70-71, 75, 89, 105, 141, 209-210, 293, 331
goal setting at diagnosis, 3, 75, 127-129
information resources, 89
inpatient, 207-210, 212-213, 271-273
integration with life-prolonging and
curative care, 2, 3, 13, 33, 37, 73, 85-88, 127-129, 127-129, 134-138, 142, 290-291
managed care and, 283-285
payment for, 2, 271-273, 281-282, 283-285, 291
by physicians, 95, 195-197, 281-282
planning, 134-140
potential beneficiaries of, 48
practice guidelines and protocols, 8-9, 10, 71, 75, 184-187, 229-230
quality improvement projects, 183-184
for rare, fatal disorders, 6, 22, 70-71, 82-84
Paralyzing agents, extubation and, 150, n.1 298
Parental notification laws, 324
Parent–clinician conflict resolution.
See also Communication; Legal issues
consensus building techniques, 309, 310, 312
counseling and consultation, 15, 309-310
due process approach, 313
ethics committees and, 126-127, 293, 312-314
individual-level strategies, 14-15, 308, 309-311
involvement of new parties, 309
knowledge base for decisionmaking and, 312, 314, 316-317
litigation and legislation, 294, 311, 314, 317-318
organization- or system-level strategies, 14-15, 308, 312-318
practice guidelines and protocols and, 15, 184, 309, 314-315
Parents.
See also Families
absorption of information, 114, 119, 126, 377
authority to make treatment decisions, 10, 130, 134, 190, 216, 295, 296, 325
clinicians obligations to, 304
communication with, 2, 10, 15, 114-120, 123-125, 150, 159-160
conflicts with children over care, 79-81, 323-325
emotional and psychological care for, 88, 154, 159-160, 258
as experts on child’s comfort, 93-94, 145, 148, 159-160
insistence on treatment for a child, 98, 321-322
mourning differences, 160
refusal of treatment for a child, 295, 319-321
Pateau syndrome, 54
Patent ductus arteriosis, 54
Pathways of care, 85-88
Pathways of dying
and bereavement care, 154, 171-175
defined, 38
dimensions of care, 88-102
good vs. bad care, 40, 84-85, 95, 132
illustrative stories, 76-85
Payment/reimbursement for health care services.
See also Financing of care; Health insurance coverage; Managed care
and access to care, 260, 265-267, 268
capitation, withholds, and bonuses, 267, 274-275, 285, 289
claims administration, 12, 279-281, 285, 292
Common Procedural Coding System (HCPCS), 278 n.35
cost-based, 267
Current Procedural Terminology (CPT) codes, 277, 278-279
diagnosis-related groups, 14, 266, 267, 268, 269-271, 272, 292, 380-381
fee-for-service basis, 275
global (bundled), 274
for hospice care, 12-13, 272, 281, 282-283, 289-290
levels of, 12, 276-278, 279, 280-281, 282, 285, 288
managed care plans, 193, 283-286
outlier mechanism, 13, 268 n.26, 289
for palliative and end-of-life care, 281-282
pediatricians, 276-281
physicians and other professionals, 13, 193, 273-282, 288, 290, 292
procedure codes and coverage policies, 274, 276, 278-279, 280, 291-292, 380-381
prospective payment system, 266-267, 381
and quality of care, 193, 266-267, 269
recommendations, 13-14, 291-292
research directions, 380-381
resource-based relative value scale (RBRVS), 14, 274, 276, 380-381
for respite care, 272
Pediatric Advanced Illness Care Coordination (PAICC) program, 193-195, 354, 377
Pediatric care teams
bereavement care by, 5, 178-179, 230
communication skills, 100, 110, 115
education in teamwork, 203, 340, 342
effectiveness, 203
ethical care by, 304
goals, 201
hospice relationship with, 217
interdisciplinary, 377-378
research directions, 202-203, 377-378
responsibilities of members of, 135-138
spiritual support from, 163
support of family, 75, 139-140
types and composition, 201-203, 209
Pediatric Chaplains Network (PCN), 165
Pediatricians
attitudes toward pediatric death and dying, 100
communicating bad news, 100, 101
education in end-of-life issues, 330-331, 342-343
life-support decisions, 98, 298 n.6
as palliative care providers, 90, 195-196
payment/reimbursement problems, 276-281
Pediatric intensive care units (PICUs)
communication with parents and children, 101, 159-160
hospice relationship with, 217
life-sustaining treatment decisions, 97
pain management in, 92-93, 208
as site of death, 68, 69, 70, 71, 206
Pennsylvania, 277
Perinatal period
deaths in, 44-45
research directions, 366-368
Persistent vegetative state, 321-322
Personal care services, 255, 261
Pharmicists, 337
Philanthropy, 264
Physical care
after death, 151-153
dimensions, 142-143
of family caregivers, 143
imminence of death and, 148-151
life support technologies, 149-151
parents’ role in comfort management, 145, 148
symptom management, 143-145, 148-149
Physician Orders for Life-Sustaining Treatment (POLST), 185
Physicians.
See also Pediatricians
acceptance of poor prognosis, 101-102, 115, 129
attitudes about life-sustaining interventions, 99, 297-298, 307-308
bereavement support from, 178-179
communicating bad news, 99-103, 105, 113-125
end-of-life care by, 95, 101-102
Medicaid patients, 253, 277-278, 288
pediatric subspecialists, 196-197, 340, 343
responsibilities of, 135-138
Placenta, cord, and membranes, deaths related to complications of, 5, 49, 44, 46
Pneumonia and influenza, 43, 44-45, 50, 55
Posttraumatic stress disorder, 174-175, 176, 363, 372-373
Practical dimensions of care
employee assistance programs, 170
examples, 169
friends and faith communities as providers, 170, 171
health insurance coverage, 167-168, 170
hospice services, 170
personal care services, 255
prognosis and, 111
respite care, 154, 156, 170, 171
school arrangements, 170
socioeconomic status and, 168, 170
Practice guidelines and protocols, 8-9, 10, 15, 71, 75, 90, 94, 124, 145, 174, 184-187, 214, 226, 228, 229-230, 309, 314-315
Preferred provider organizations, 245
Pregnancy, complications of, 5, 44, 46
Prematurity/low birth weight, 37, 38, 42, 43, 44, 46, 50, 52
causes of death, 55
and congenital anomalies, 54
ethnocultural differences, 65, 71
and pain management, 94-95, 207
telemedicine applications for, 227
trajectory of dying, 75
treatment decisions in extreme cases, 75, 326-327
Premera Blue Cross, 247-248
Prepaid health plans, 251 n.13
Prescription drugs
closed formulary, 257
coverage and financing of, 244-246, 256-257, 265
investigational, 265
metabolism of, 245 n.6
monitoring safety and quality of care, 257
orphan drugs, 353
pharmacy benefit managers, 245
symptom and pain management with, 142, 186, 364
testing in children, 22, 26, 351-352, 389-390
therapeutic substitution policies, 245-246
Primary care case management providers, 251 n.13
Prognosis
communication of, 4-5, 75, 110-113, 118
importance of information on, 110-111
parent vs. physician understanding of, 101-102, 111
reevaluation of, 110
statistical models, 113
uncertainty in, 111-113
Program of All-Inclusive Care for the Elderly (PACE), 25, 183
Programs for All-Inclusive Care for Children and Their Families, 25, 259
Project on Death in America, 89 n.2, 228.
See also Open Society Institute
Protocols and standards, 8-9, 184-187, 200, 226, 228, 229-230.
See also Practice guidelines and protocols
Psychotherapy. See Emotional and psychological care; Mental health services
Q
Quality of care
defined, 182
directions for professionals and institutions, 8-11, 227-233
general concepts, 181-183
improvement strategies, 24-26, 182-184, 228, 375 n.5, 378 n.6
measuring and monitoring, 182, 267, 269, 287
payment reimbursement methods and, 193, 266-267, 286
plan-do-study (or check)-act cycle, 182-183
practice guidelines and protocols, 8-9, 184-187, 229-230
Quality of dying
defined, 39
measuring, 39
Quality of life, 38
and decisions about care, 72, 144, 295, 300-301, 316
defined, 39
of family members, 360
in long-term residential care facilities, 221-222
and pain management, 91-92
research directions, 359-361
R
Rachischisis, 54
Rare conditions
in infants, 70-71
palliative care for, 6, 22, 70-71, 82-84
prognostic uncertainty, 112
treatment options and goal setting, 127
Recommendations
bereavement care, 11, 230-231, 291
communication skills, 138-139
coordination and continuity of care, 9-10, 231-232
delivery of care, 229-232, 373-379
education of health professionals, 15-16, 233, 348-349
hospice benefits, 289-290
financing of palliative and bereavement care, 12-13, 290-291
payment-related classification schemes, 13-14, 291-292
practice guidelines and administrative protocols, 8-9, 229-230
regional support for small communities, 232-233
Regence Blue Shield, 247-248
Regional differences
in homicides, 62-63
in mortality rates, 62-63
in site of death, 68
Religious conviction
and insistence on treatment, 322
and refusal of treatment, 319-320, 324
Research in pediatric care
bereavement care, 176, 366-368, 370-373, 382
center- and network-focused strategy, 17, 356-357
challenges of, 358-359, 361, 385-386
communications, 229-230, 376-377
by comprehensive cancer centers, 355-356
data collection, 17, 355, 360-361, 374
demonstration projects, 25, 183, 215, 252-253, 259, 291, 354
educating health professionals, 26, 348-349, 382-385
emergency medical services, 352, 353-354, 368-370
ethical and legal issues in, 295 n.1, 351, 386-390
federally funded, 352-354, 379, 387-389
financing palliative and end-of-life care, 26, 291-292, 379-382
initiatives to encourage, 351-355
institutional review boards (IRBs), 387, 388, 389, 390
methodological issues, 358-359, 360-361, 385
models of care delivery, 373-379
pain management, 18, 361-362, 364, 365-366
palliative and end-of-life care, 183, 215, 252-253, 259, 291, 350, 353-355, 356-357, 385-386
payment and coding systems, 380-381
on pediatric care teams, 202-203, 377-378
perinatal death, 366-368
prescription drugs, 26, 352-353, 389-390
privately funded, 26, 354-355, 389-390
quality of life for children and families, 359-361
recommended directions in, 355-385
resuscitation termination, 368-370
sudden and unexpected death, 368-370, 372-373
symptom assessment and management, 361-366
Residential care
hospice services, 170, 220-221
long-term care facilities, 221-222
Resource and logistic review and evaluation, 137
Respite care, 154, 156, 170, 171, 220-221, 241, 247, 258, 263, 272
Resuscitation, 75-76, 100, 124, 130, 135, 151, 296, 298, 299, 300, 305, 316-317, 322, 334, 368-369
Rheingold, Susan, 141
Robert Wood Johnson Foundation, 26, 89 n.2, 228, 247, 272 n.30, 340, 354
Ronald McDonald Houses, 171
Rousar-Thompson, Peg, 175
S
Safety net providers, 12, 77-78, 206, 238, 263-264, 267, 268
San Diego Hospice, 220
Schools and schooling
bereavement support, 177-178, 223
emotional and psychological considerations, 156
hospital teachers, 200
medical services in, 198, 222-223
practical assistance for families, 170, 198
preparation of classmates, 155, 156, 222-223
reentry considerations for adolescents, 79-80
special education services, 170 n.4
Sedation controversy, 149, 301, 364
Seizures and convulsions, 144-145, 146
Septicemia, 44-45
Siblings
bereavement care, 177-178
camps for, 223
communication with, 178
emotional and psychological care for, 64, 161-162, 199, 258
Sickle cell anemia, 48
Skin problems, 147
Smith, Thomas J., 234
Social Security Act
Title XIX, 249
Title XXI, 260
Social Security Administration, 262
Social workers, 108, 113, 124, 199, 238, 246, 258, 273, 275, 315, 337, 338, 344. See also Supportive care
Society for Bioethics Consultation (SBC), 314
Society for Health and Human Values (SHHV), 314
Socioeconomic differences
in access to care, 6, 168, 170
and information resources, 110
Soros, 354.
See also Open Society Institute
South Dakota, 254
Spina bifida, 54
Spinal muscular atrophy, 69
Spiritual care
«anointing of the sick,»162, 166
assessment of needs, 167
dimensions, 162-167
ethical considerations, 165-166
for families, 136-137, 166-167, 173
«life review,»166
SSM Cardinal Glennon Children’s Hospital, 354
Standardized patients or parents, 345, 383
Stanford University Medical Center, 346, 354
Starlight Children’s Foundation, 154
State Children’s Health Insurance Program (SCHIP), 236, 238, 260, 275, 278
Stepanek, Matthew, 155, 164-165
Sudden infant death syndrome (SIDS), 4, 5, 43, 44, 46, 50, 52, 55-56, 68, 71, 72, 173-174, 317, 385
Suicides, 44-45, 46, 59, 60, 61, 63, 66
Supplemental Security Income (SSI), 262, 286
Supportive care
common goals and examples, 125, 128
from faith communities, 170, 171
families’ support networks, 75, 139-140, 158-159, 162
from health care professionals, 34-35, 96 n.1, 102
in schools, 222-223
Symptoms and symptom management.
See also Pain
assessment, 5, 93, 135, 136, 148-149, 363
barriers to, 256-257
communications and, 143-144, 150
complementary medicine, 365-366
impact of control, 365
insurance coverage, 243-244
life support technologies and, 149-151, 363
management, 5, 98, 102, 135, 142, 186-187, 214, 364
measurement, 363
prevalence and intensity in children and families, 363
reevaluation when death is imminent, 148-149
research directions, 361-366, 384-385
treatment- and procedure-related, 145
T
Telemedicine, 10, 110, 214, 226-227, 233, 244, 256, 379
Texas, 237
Title V Maternal and Child Health Block Grants, 168, 236, 256, 261-262, 286, 287
Toddler, defined, 32
Total Quality Management (TQM), 182
Training of family caregivers, 143
Transfer and follow-up procedures, 188
Treatment decisionmaking and goal setting.
See also Parent–clinician conflict resolution
acute vs. chronic conditions, 96-97
adolescents, 79-81, 139, 157, 295, 296, 318, 323-325
advance care planning, 6, 87, 127, 129-133
Baby Doe regulations and, 99, 316, 326-327
child patient’s involvement in, 10-11, 79-81, 123, 130, 133-134, 138-139, 155, 157, 190-191, 294, 296, 318, 323-324, 376-377
considerations in establishing goals, 3, 125-127, 136
cultural and religious sensitivity, 127, 132, 133-134, 138, 296, 302
curative treatments, 300
at diagnosis time, 127-129
about end-of-life care, 126, 129-131, 138-139
experimental treatment, 134, 296
financial considerations, 295, 301-302, 382
implementing plans, 139
insistence on treatment, 305-306, 316, 321-322
integrating palliative care, 3, 85-88, 127-129
knowledge base for, 316-317
legal considerations, 99, 130-131, 134, 319-322
life-sustaining treatment, 96-98, 127, 150-151, 298-300, 303
in long-term residential care facilities, 221
protocols for, 8-9, 185-186, 314-315
quality-of-life considerations, 72, 144, 295, 300-301, 316
recommendations, 10-11, 138-139
reevaluation of goals, 8, 86-87, 101-102, 129, 137, 148-149
refusal of treatment, 316, 319-321, 324-325
resource considerations, 98-99, 301-302, 305, 306, 311, 315
supporting the family, 139-140
withdrawal of treatment, 93, 131, 296-297, 326-327
Trisomy, 54
Tuberculosis, 43
U
Unintentional injuries
adolescents’ deaths from, 44-45, 60-61
children’s deaths from, 43, 44, 46, 56, 57, 78-79
infants’ deaths from, 49, 50, 52
United Way, 264
University of California, San Francisco Children’s Hospital, 354
University of Kansas, 227
University of Texas
Health Sciences Center, 193
Medical Branch at Galveston, 210
University of Washington, 248
V
Vanderbilt Children’s Hospital, 354
Vermont, 237
Virginia, 259
Volunteer funding and services, 264
Von Gunten, Charles, 219 n.10
W
Washington, 68, 205, 237, 247-248
Williamson-Noble, Esmeralda, 72, 123
Wisconsin, 260
Wish granting programs, 154
Wordsworth, William, 41
World Health Organization, 33 n.2, 90, 228
World Medical Association, 386-387
Z