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Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Accountability, 181-187, 231

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

emancipated minors, 323, 325

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

Alaska, 237, 251, 277

American Academy of Hospice and Palliative Medicine, 25, 329

*  

Index does not include Appendices.

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Colorado, 62, 259, 286

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

follow-up, 117, 123-124

of hope, 121, 159

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

problems, 85, 90, 99-102

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

financing, 260, 261

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

Baby K, 305, 316, 322

causes and types of, 53, 54

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

Conlon, Rose, 158, 180

Connecticut, 254, 277

Consultative services

with hospices, 10, 95, 132-133, 214, 217, 220, 232, 243-244

inpatient, 10, 226, 232

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

preparing for, 72, 173

progressive condition with intermittent crises, 74, 75, 82-84, 87-88, 112

public health advances and, 41-49

reporting to medical examiner, 131

risk factors for, 63-66, 67

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

of rare conditions, 22, 108

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

Dokken, Deborah, 19, 293, 344

Down syndrome, 37, 54, 133, 316, 326

Drowning, 57, 70

Drugs. See Prescription drugs

Duchenne muscular dystrophy, 54

Dying.

See also Death in childhood; Pathways of dying

defined, 36

Dysphagia, 147

Dyspnea and cough, 144, 147

E

Edmarc, 215, 220

Education Development Center of Boston, 24, 354

Education of health care professionals

accreditation, licensure, and professional standards and, 16, 338, 339-340, 345, 349

basic elements, 328, 330-333

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

current status, 85, 334-339

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

and DNR orders, 207, 296, 299

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

for hospice workers, 216, 333

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

defined, 2, 34

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

Baby K case, 305, 316, 322

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 mortality rates, 64-66, 67

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

Fatigue, 91, 93, 147

Federal Tax Equity and Fiscal Responsibility Act of 1982, 252 n.14

Federation of State Medical Boards (FSMB), 345

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Florida, 227, 257, 259

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 access to care, 139, 202

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

Goldman, Ann, 97, 132 n.4

Grief.

See also Bereavement care; Mourning

anticipatory, 35, 159, 172-173

care, 171-175

complicated, 35, 175, 372

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

Hawaii, 62-63, 237

Health Care Financing Administration (HCFA), 251, 265 n.24, 268, 271 n.28, 272, 286

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

Health care professionals.

See also Education of health care professionals; Pediatric care teams; specific types of providers

competencies, 331-333, 341

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

palliative care, 2, 5-6

for practical dimensions of care, 167-168, 170

prescription drugs (outpatient), 244-246

psychosocial, respite, and other services, 200, 246-247

rates, 236, 239-240

reimbursement methods, 268

respite care, 241, 247, 263

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

Helen House, 69, 92, 220

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

nurses, 197-198, 211

pain and symptom management at, 149, 211, 214

physician services, 279

providers and caseloads, 211, 214

questions about, 217, 218-219

Homicides

adolescent deaths, 60, 61, 63-64, 66

children’s deaths, 56, 57, 59

communication about, 125

failure to provide medical care as, 320

mortality rates, 5, 44-45, 46

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

inpatient programs, 98, 207-210

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

licensure restrictions, 307

Medicaid/Medicare eligibility, 2, 34, 48, 112-113, 131, 210, 211, 219-220, 254-255, 289

perinatal, 25, 107, 152, 172

physician services, 279

potential beneficiaries of, 48

for practical dimensions of care, 170

questions about, 217, 218-219

recommendations, 12-13, 290-291

research directions, 290, 381

residential services, 69, 170, 220-221

spiritual care, 163, 200

telemedicine applications, 227

volunteer activities, 335

Hospice of the Florida Suncoast, 220

Hospitals.

See also Inpatient care

accreditation standards, 163

chaplains, 162, 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

as site of death, 66, 68, 69

visiting policies, 207, 314

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

stillborn, 152, 176

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

J

Johns Hopkins Children’s Center, 354

Joint Commission on the Accreditation of Healthcare Organizations (JCAHO), 186, 312

K

Kansas, 227

Kentucky, 259

Kittiko, Winona, 24, 211, 234

L

Last Acts, 89 n.2, 228

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

management of, 96-99, 149-151

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

Loder, Patricia, 123, 173

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

Massachusetts, 238, 277-278

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

innovations in, 252-253, 259

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, 227, 257, 270, 286

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

alcohol use and, 61, 62

fatalities, 57, 60-61, 62, 63, 66

risk factors for, 61, 62, 63, 66

Mourning, 35, 160

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

Music therapy, 128, 156, 246

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 Center for Health Statistics, 17, 355

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Newborn sepsis, 44, 55

New Hampshire, 254

New Jersey, 277

New York, 259

Non-Hodgkin’s lymphoma, 61

North Carolina, 256, 270

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

Nursing homes, 68, 266

O

Office of Pediatric Therapeutics, 353

Office of Personnel Management, 241

Oklahoma, 254, 277-278

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

Oregon, 185, 307, 318

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

dimensions of, 146, 154-155

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

adequacy of, 21-24, 88-102

adult care compared, 3, 4-7, 21, 35

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

barriers to considering, 85, 102-103, 131-133, 139

bereavement care integrated with, 13, 210, 225, 226, 290-292

clinical trials, 197, 222

consultative services, 10, 95, 102, 129, 209, 210, 232, 248, 290

defined, 2, 33-34

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

in home, 211, 214-215

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

recommendations, 103, 291-292

working principles, 7, 28-31

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

abusive, 59, 174, 294, 321

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

as teachers, 345, 383

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

trajectories, 72, 73-76

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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 home care, 281, 381

for hospice care, 12-13, 272, 281, 282-283, 289-290

hospitals, 267-273, 288, 292

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

family conferences, 309, 311

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

palliative care by, 95, 195-197, 281-282, 290

payment/reimbursement methods, 13, 253, 273-275, 288, 290

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

after death, 125, 168

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

mortality rates, 5, 55, 65

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

outcome measures, 182, 194

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

measuring, 39, 359-360, 376

and pain management, 91-92

research directions, 359-361

R

Rachischisis, 54

Rae, Susan, 161, 177

Rare conditions

diagnosis, 22, 108

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

agenda, 17-18, 357-358

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

Respiratory distress syndrome, 5, 44, 46, 52, 55

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Rhode Island, 62, 277

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

Sarcomas, 61, 79-81

Schools and schooling

bereavement support, 177-178, 223

and DNR orders, 294, 299-300

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

siblings and, 177-178, 223

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

burdens on, 72, 85, 223

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

in mortality rates, 64-66, 71

Soros, 354.

See also Open Society Institute

South Carolina, 62, 256

South Dakota, 254

Spina bifida, 54

Spinal muscular atrophy, 69

Spiritual care

«anointing of the sick,»162, 166

assessment of needs, 167

for children, 136, 164-166

dimensions, 162-167

education in, 337, 338, 346

ethical considerations, 165-166

for families, 136-137, 166-167, 173

«life review,»166

standards for, 186, 200

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

Stillbirth, 50, 51

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

in support groups, 167, 173, 223

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

emotional, 91-92, 363

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

physical, 144-145, 146-147

prevalence and intensity in children and families, 363

psychological, 363, 364

reevaluation when death is imminent, 148-149

research directions, 361-366, 384-385

treatment- and procedure-related, 145

T

Tay-Sachs disease, 54, 299

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

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

University of Texas

Health Sciences Center, 193

Medical Branch at Galveston, 210

University of Washington, 248

Utah, 62-63, 259

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

Weil, Kelly, 155, 223

West Virginia, 237, 325

Williamson-Noble, Esmeralda, 72, 123

Wisconsin, 260

Wish granting programs, 154

Wooten, Becky, 88, 204, 211

Wordsworth, William, 41

World Health Organization, 33 n.2, 90, 228

World Medical Association, 386-387

Wyoming, 62, 251

Z

Zink the Zebra program, 155, 156, 223

Suggested Citation:"Index." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
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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 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.

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