National Academies Press: OpenBook

Improving Palliative Care for Cancer (2001)

Chapter: Index

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Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
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Index

A

Accountability, 4, 14, 24–26, 97, 100, 101, 120, 121, 122–123, 219

see also Standards

Activities of daily living, 103, 241

Adolescents, 163, 169, 170–173, 191

Advanced Cancer: Living Each Day, 28, 138, 140

Advanced Planning and Compassionate

Care Act, 143

Advocacy, 20, 42, 142–143, 242, 263, 301

see also Social workers

children with cancer, 167–168

African Americans, 4, 5, 14, 26–27, 153– 160

Agency for Healthcare Research and Quality (AHRQ), 22, 23, 32, 89, 90, 96, 116, 122

clinical practice guidelines, 201, 225

pain management, 107, 243

patient decisionmaking, 112, 113

Age of patients and others, 89, 102, 158

see also Adolescents;

Children;

Elderly persons

breast cancer, 84

Internet users, 148

population, general, 9

AIDS, 36, 38, 45, 153, 155, 159, 245–246, 265, 285–286, 300, 301

Alcohol use, 102

Alliance for Lung Cancer Advocacy, Support, and Education, 143, 144

American Academy of Hospice and

Palliative Care, 164, 165, 184

American Academy of Pediatrics, 171

American Association of the Colleges of

Nursing, 164, 298

American Association of Medical Colleges, 279, 280–281, 282

American Cancer Society, 7, 28–29, 51, 63, 138–142, 150, 263, 266

African Americans, 153

American College of Surgeons, 63, 201

American Medical Association, 164, 281, 294

American Pain Society (APS), 22, 118, 143, 242

American Psychiatric Association (APA), 21–22, 204, 217, 225

American Society of Clinical Oncology (ASCO), 7, 11, 42, 43–44, 46–47, 52, 113, 201, 202, 203, 288–289

American Urology Association, 202

Anemia, 23, 35, 80, 205, 225, 254, 255, 256, 257, 266–267

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

Animal models, 35, 246, 249, 254, 260

Anorexia and cachexia, 34, 35, 45, 108, 234, 237, 244, 248–251, 265

see also Weight loss

clinical trials, 250, 251, 267

drug treatment, general, 249–250

dyspnea, 254

patient/family education, 133

physicians’ perceptions of, 46

Anxiety, 3, 5, 10, 30, 48, 108, 109–110, 184, 216–217, 233, 236, 237, 244, 255, 259, 259–261

caregivers, 133, 135, 204, 215, 223, 240

clinical practice guidelines, 21, 22, 200, 203, 204, 208, 209–214, 218, 221, 222–229 (passim)

clinical trials, 234

decisionmaking and, 109, 235

drug treatment, 110, 216, 255, 259–261

families, general, 133, 135, 204, 215, 223, 240

gender factors, 109–110

pain and, 106, 222, 223–225, 236–237, 238

patient/family education, 133, 135, 204

physicians, 46

Approaching Death: Improving Care at the End of Life, ix, 4, 12, 16, 40, 41, 203, 290

Association of American Medical Colleges, 279, 280–281

Association of Community Cancer Centers, 137

Attitudes

see also Anxiety;

Depression;

Grief and bereavement

African Americans, 154–156, 158

family satisfaction, 123

nurses, 300

toward pain, 106, 222, 223–225, 236–237 , 238

patient beliefs about survival possibilities, 135, 237, 241

patient satisfaction, 24, 25, 38, 67, 97, 115, 117–118, 119, 124, 150

professionals, 46, 137, 221, 266, 288–289 , 290, 291

public opinion, 36, 41, 42, 106, 114, 140, 207

African Americans, 155–156, 158

Autopsies, 92

B

Behavioral interventions, 83, 234, 236, 246–247 , 258

hypnosis, 246–247

relaxation therapy, 246, 257

Bereavement, see Grief and bereavement

Black persons, see African Americans

Breast cancer, 78, 81, 84, 103, 185, 237, 248, 285–286

depression, 109

elderly women, 84

patient/family education, 140, 143

Breathing difficulty, see Dyspnea

Bowel obstruction, 35, 224, 257, 258

C

Cachexia, see Anorexia and cachexia

Cancer Care Consortium, 202

Cancer Care, Inc., 142–143, 145, 147

Cancer Care Issues in the United States: Quality of Care, Quality of Life, 40, 42–43

Cancer Facts sheets, 139

Cancer Information Service, 139, 141

Cancer Pain Management, 242

Cancer Therapy Evaluation Program, 48

Cannabis, see Dronabinol

Capitation, 71, 91, 113

Cardiopulmonary resuscitation (CPR), 156, 240–241

do-not-resuscitate orders, 38–39, 111, 112, 155, 189, 192, 241–242

Caring for the Patient with Cancer at Home, 28, 139

Case management, 20, 177–178, 183, 185–186 , 301

see also Clinical practice guidelines;

Coordination of care;

Referral to care;

Social workers

Centers for Disease Control and Prevention, 63, 89

Chemotherapy, 19, 236, 237, 248

cost of, 76–77, 78–79, 81, 82

decisionmaking, 19, 111, 112, 113, 124

dyspnea, 252

nausea and vomiting, 257–258

patient decisionmaking, 111, 112, 113, 124

patient/family education, 141

physicians’ perceptions of, 47

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

Chertkov, Lisa, 199–232

Children, 5–6, 7, 161–198, 287, 289, 290

adolescents, 163, 169, 170–173, 191

advocacy, 167–168

clinical practice guidelines, 164–165, 169, 172, 175, 176, 178–179, 193

clinical trials, 168, 169, 175, 181, 193

community influences and programs, 175–176, 179

continuity of care, 163, 165, 176–179

cost and cost-effectiveness, 175, 176, 178, 181, 193

decisionmaking, 161, 163, 170–173, 192, 193

definitional issues, 169, 173–175, 178–179

drug treatment, 163, 169, 180

epidemiology, 161, 181

family influences, 161–162, 168–169, 172, 173, 174, 175, 177, 178, 180, 182, 184, 187–188, 189, 190, 191

grief and bereavement, 163, 166, 179, 191

siblings, 190, 192

geographic variation, 175, 177

grief and bereavement, 163, 166, 179, 191

health insurance, 6–7, 16, 164, 175, 177–178, 182–191, 193

home care, 174, 175, 188

Medicaid, 188, 189

nurses, 164, 166, 188, 190

pain, 162, 164, 169, 177, 179–182, 184, 192

physicians’ perceptions of care, 47

professional education, 163, 164–168, 175–176, 193

regulatory issues, 163–167 (passim), 171, 182–191, 193

religious and spiritual issues, 162, 166, 169

Children’s Hospice International, 178, 181

Children’s International Project on Palliative Care/Hospice Services, 165

City of Hope Pain/Palliative Care Resource Center, 143, 302

Claims data, 7, 26, 31, 51, 85, 98, 121, 122

Cleeland, Charles, 233–276

Clinical practice guidelines, 7, 17–18, 20–23, 28, 31, 37, 44, 51–52, 81, 90, 100, 101, 115, 116, 125, 199– 232, 292

anxiety, 21, 22, 200, 203, 204, 208, 209–214, 218, 221, 222–229 (passim)

children with cancer, 164–165, 169, 172, 175, 176, 178–179, 193

clinical trials and, 200, 203, 206, 219–220 , 242–243

cultural influences, 206, 207–208, 227

depression, 21, 200, 204, 208, 209–214, 216, 224–225, 227

drug treatment, 205, 208, 216, 217, 223, 224, 225

dyspnea, 23, 203, 205, 222, 223, 226–227

elderly persons, 83–84

families, 178–179, 193, 203, 206–207, 208, 213, 214, 219, 221, 222, 223, 227

informed consent, 163, 170–173

National Comprehensive Cancer

Network (NCCN), 21–23, 81, 201, 202, 203, 204–205, 209–212 , 214, 218, 220, 224, 225, 242

NCI role, 6, 17, 28, 48–49, 51–52, 83, 90, 134

pain management, 22, 23, 36, 134, 203, 205, 213, 216, 222, 224–225, 242–243, 245, 247

pastoral counseling, 22, 205, 208, 209, 210, 214, 218, 219, 221

patient decisionmaking, 113, 123–124, 200, 208

patient education, 28, 203, 206–207, 208, 219, 221, 222, 223, 227

personality disorders, 22, 23, 204, 217, 215–216, 217

physicians, 21, 201, 204, 206–207, 209, 210, 222, 223

psychosocial factors, 22, 52, 200, 203, 208, 209, 215–218, 219, 223–224 , 227–228

referral to care, 174, 175, 178

religious and other spiritual influences, 22, 200, 203, 205, 206, 208, 209, 210, 212, 213, 214, 221, 223–224 , 228

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

social influences, 22, 205, 209, 214, 218, 223–224;

see also “psychosocial influences” supra

Clinical trials, 31, 32, 35, 37–39, 52, 267–269

adolescents with cancer, 170

anorexia and cachexia, 250, 251, 267

anxiety, 234

chemotherapy, 113

children with cancer, 168, 169, 175, 181, 193

clinical practice guidelines and, 200, 203, 206, 219–220, 242–243

cognitive impairments, 252–253

cost of care and, 78, 82–83

depression, 32, 35

dyspnea, 108, 254–255, 267

emotional problems, 260, 261

fatigue, 256–257, 267

gastrointestinal symptoms, 258–259, 267

NCI role, 6, 17, 28, 80, 267–269

pain management, 28, 32, 80, 83, 242–244 , 245, 246, 247, 248–249

patient decisionmaking, 112

personality disorders, 22, 23, 204, 215–216 , 217

Cognitive deficits, 30, 34–35, 45, 114, 117, 234, 236, 238, 244, 251–253

confusion, 3, 5, 10, 21, 108, 215, 244

delirium and dementia, 21, 34–35, 133, 200, 204, 215–216, 244, 251–253 , 285–286

memory deficits, 238, 244, 251, 252

Colorectal cancer, 77, 81, 103, 107, 237, 285

clinical practice guidelines, 202

depression, 109, 237

Commonwealth Fund, 36, 40

Community influences and programs, 5–6

children with cancer, 175–176, 179

clinical practice guidelines, 202

rural areas, 19, 157, 175

urban areas, 27, 157

Compendium for Pediatric Palliative Care, 165

Comprehensive Cancer Centers, 5–6, 29–30, 50, 123, 133–134, 135–136, 137–138 , 147, 150, 158, 206

Computer applications

see also Internet

CD-ROM, 44

confidentiality and privacy, 8, 52, 64, 101

database linkage, 8, 52, 64, 122, 265, 267

intranets, 8, 52

survival time, 39

Confidentiality and privacy, 8, 52, 64, 101

Confusion, 3, 5, 10, 21, 108, 215, 244

Conquering Pain Act, 136

Consumer Assessment of Health Plans Survey, 122

Continuity of care, 24, 25, 88, 97, 118, 120, 123, 141

case management, 20, 177–178, 183, 185–186, 301

children, 163, 165, 176–179

Cooperative Oncology Groups (COGs), 60–61 , 112, 238, 239, 244, 268

Coordination of care, 24, 25, 97, 118, 120, 124, 146, 176–177, 265, 269

case management, 20, 177–178, 183, 185–186, 301

referral to care, 4, 12, 21, 30, 74, 86, 105, 136

children, 174, 175, 178

Corticosteroids, 35, 217, 254, 255, 257

Cost and cost-effectiveness, 15–16, 125

see also Health insurance;

Medicare chemotherapy, 76–77, 78–79, 81, 82

children with cancer, 175, 176, 178, 181, 193

clinical trials, 78, 82–83

decisionmaking, 78–79, 86, 87–88

definition, 82

drug treatment, 75, 79, 80, 81, 86, 87, 89, 90;

see also “chemotherapy” supra

elderly persons, 83–84, 87–88

financial burden of care, general, 10, 30, 41, 48, 67–95, 114, 153, 158, 175, 184–185, 208

NCI role, 80, 83, 90

nursing homes, financing, 90–91

Medicare, 15, 72, 85

pain management, 75, 79–80, 81, 83

physicians, 81, 82, 87, 182–183, 186–188 , 191

professional education, general, 67, 92

radiation therapy, 76–77, 81

standards and, 67, 89

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

Counseling, 14, 20, 22, 29, 30, 49, 139, 142, 184, 210, 214

see also Patient education;

Social workers

pastoral counseling, 22, 188, 205, 208, 209, 210, 214, 218, 219, 221

social workers, 5, 6, 7, 17, 20, 41, 52, 134, 142–143, 205, 208, 210, 214, 218, 278, 301–305

children with cancer, 164, 166, 184

Court cases, see Litigation

CRISP database, 236, 243–244, 247–248, 250, 253, 254–255, 256–257, 258, 261

Cultural influences, 7, 51, 92, 154, 156, 159

see also Language factors;

Race/ ethnicity;

Religious and other spiritual influences

clinical practice guidelines, 206, 207–208 , 227

Current Procedural Terminology, 122, 183

Cytokines, 34, 35, 246, 249–250, 256, 265, 266–267

D

Database linkage, 8, 52, 64, 122, 265, 267

confidentiality and privacy, 8, 52, 64, 101

Decisionmaking, 11, 24, 38–39, 41, 97–98, 99–100, 111–113, 115, 116, 117, 120, 123–124, 133, 241–242, 254, 285

see also Cognitive deficits;

Patient education

anxiety and depression and, 109, 235

chemotherapy, 19, 111, 112, 113, 124

children with cancer, 161, 163, 170–173, 192, 193

clinical practice guidelines, 113, 123–124 , 200, 208

confusion, 3, 5, 10, 21, 108, 215, 244

cost of care and, 78–79, 86, 87–88

do-not-resuscitate orders, 38–39, 111, 112, 155, 189, 192, 241–242

drug treatment, 112, 113;

see also “chemotherapy” supra

ethical issues, 111, 159, 163, 200, 280, 299

family influences, 111–113, 116–117, 241–242

physicians and, 111–112, 119, 241–242

informed consent, 163, 170–173

prostate cancer, 78–79

radiation therapy, 112, 113

Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), 37–39, 45, 111–112, 116–117, 122, 135, 225, 237, 240, 241, 268

Definitional issues, 264

barriers to care, 3–4

best treatments, 24

children with cancer, 169, 173–175, 178–179

clinical practice guidelines, 200

cost and cost-effectiveness, 82

distress, 21, 212

hospice care, 15, 49, 73–74, 113–119

palliative care, general, 11, 82

quality of care, general, 99, 102

Dehydration and hydration, 26, 48, 79, 109, 113, 121, 169

Delirium and dementia, 21, 34–35, 133, 200, 204, 215–216, 244, 251–253 , 285–286

Demonstration projects, 6, 7, 39, 43, 51, 52, 107, 120, 157, 158, 239

Department of Defense, 107, 263

Department of Health and Human Services, 62, 143

see also Agency for Healthcare Research and Quality;

Health care Financing Administration;

National Cancer Institute;

National Institutes of Health

Centers for Disease Control and Prevention, 63, 89

Food and Drug Administration, 80, 180

Health Resources and Services

Administration, 89, 90, 92

National Center for Health Statistics, 89, 102

Department of Veterans Affairs/Veterans Health Administration, 36, 62, 89, 90, 107, 137, 295

Depression, 35, 44, 45, 109–110, 233, 234, 237, 238, 240, 244, 255, 259–261 , 262

breast cancer, 109

caregivers, 215, 223, 240

clinical practice guidelines, 21, 200, 204, 208, 209–214, 216, 224–225, 227

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
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clinical trials, 32, 35

colorectal cancer, 109, 237

decisionmaking and, 109, 235

drug treatment, 110, 216, 255, 259–261

pain and, 106, 216, 224–225, 255

patient/family education, 133

physicians’ perceptions of, 46

suicide, 106, 109, 110

Diagnostic and Statistical Manual of Mental Disorders, 110

Diet and nutrition, see Anorexia and cachexia;

Nutrition

Distress, see Anorexia and cachexia;

Anxiety;

Depression;

Emotional influences;

Grief and bereavement;

Nausea and vomiting;

Pain and pain management

Do-not-resuscitate orders, 38–39, 111, 112, 155, 189, 192, 241–242

Dronabinol, 249, 257

Drug Enforcement Administration, 225

Drug treatment, 41, 102, 109

see also Chemotherapy

bowel obstructions, 259

cachexia, 249–250

children, 163, 169, 180

clinical practice guidelines, 205, 208, 216, 217, 223, 224, 225

cognitive deficits, 34, 251, 253

corticosteroids, 35, 217, 254, 255, 257

cost of care, 75, 79, 80, 81, 86, 87, 89, 90

chemotherapy, 76–77, 78–79, 81, 82

dronabinol, 249, 257

dyspnea, 108, 226–227, 253, 254

emotional distress, 110, 216, 255, 259–261

fatigue, 143, 255, 256–257

Medicare, 79, 80, 86, 90

nausea and vomiting, 257–258

pain management, 34, 44, 49, 75, 79–80, 86, 107, 113, 117–118, 119, 143–144 , 163, 169, 180, 208, 224, 225, 238, 246, 247

opioids, 15, 27, 34, 35, 57, 75, 79, 86, 87, 180, 239, 247, 251, 253, 254, 255, 265, 300

patient decisionmaking, 112, 113

chemotherapy, 111, 112, 113, 124

patient education, 29, 140, 143

Dyspnea, 23, 35, 45, 108–109, 113, 242, 244, 253–255

clinical practice guidelines, 23, 203, 205, 222, 223, 226–227

clinical trials, 108, 254–255, 267

drug treatment, 108, 226–227, 253, 254

standards for assessment, 35, 254

E

Eating Hints for Cancer Patients, 28, 139

Economic issues, 4, 10, 15–16, 67–95

see also Cost and cost-effectiveness;

Funding;

Health insurance; Socioeconomic status

Education, see Internet;

Intranets;

Patient education;

Professional education

Educational attainment, 158

Education for non-professionals, see Patient education;

Public information

Education for Physicians on End-of-Life

Care, 294

Elderly persons, 9, 10, 33, 37, 38, 39, 287

see also Medicare

breast cancer, 84

cost of care, 83–84, 87–88

Internet information, 148

National Institute on Aging, 96, 113

pain management, 238

patient/family education, 141

veterans, 36

Emotional influences, general, 20, 82, 100, 114–115, 116, 213, 238, 297

see also Anxiety;

Depression

clinical trials, 260, 261

drug treatment, 110, 216, 255, 259–261

professional satisfaction, 46

End-of-Life Nursing Education Consortium, 164

Enhancing Data Systems to Improve the Quality of Cancer Care, 52, 62–64

Ensuring Quality Cancer Care, 4, 12, 24, 40, 96, 99, 105, 123, 200

Epidemiology, 25, 26, 76, 261, 285

African Americans, 153

children, 161, 181

distress, 234, 236–241, 243, 245, 259–260

Surveillance, Epidemiology, and End Results Program, 63, 64, 122, 153

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
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Ethical issues, 111, 159, 163, 200, 280, 299

see also Confidentiality and privacy; Legal issues

Ethnicity, see Race/ethnicity

Euthanasia, 36, 47, 156, 207, 235

F

Family influences, 3, 5, 11, 17, 20, 97, 99, 106, 114–115, 116, 118, 120, 124, 132–152

see also Home care

African Americans, 157, 159

anxiety, 133, 135, 204, 215, 223, 240

education regarding, 133, 135, 204

attitudes, 36

children with cancer, 161–162, 168–169, 172, 173, 174, 175, 177, 178, 180, 182, 184, 187–188, 189, 190, 191

siblings of, 190, 192

clinical practice guidelines, 178–179, 193, 203, 206–207, 208, 213, 214, 219, 221, 222, 223, 227

confused patients, 108

costs of care, 10, 67, 82, 86, 91–92, 175, 208

decisionmaking, 111–113, 116–117, 241–242

physicians and, 111–112, 119, 241–242

distress, 133, 135, 204, 215, 223, 240

dyspnea, 108

education of, 124, 132–152, 161–162, 168–169, 172, 192, 193, 203, 206–207, 208, 213, 214, 221, 223, 227

lung cancer, 141, 143

nausea and vomiting, 133, 134

standards, 142, 221

grief and bereavement, 14, 20, 26, 71, 74–75, 88, 97, 106, 114, 115, 118, 124, 133, 139, 166, 206–207 , 290, 299, 301

children with cancer, 163, 166, 179, 191

Medicare for support of families, 86

nurses’ interactions with, 39

pain management, 22, 25, 118, 133, 136–137, 143, 240, 243

physician decisionmaking shared with, 111–112, 119, 241–242

physician perceptions of, 47, 207

professional education regarding, 20, 287

respite services, 71, 86, 91, 179, 191

suicide, responses to, 110

Fatigue, 23, 35, 133, 134, 203, 205, 213, 222, 225–226, 234, 237, 238, 244, 255–257, 266

caregivers, 214–215

clinical trials, 256–257, 267

drug treatment, 143, 255, 256–257

sleeping disturbance, 133, 213, 238, 256

Federal government role, 5, 62–64, 109, 181

see also specific departments and agencies

Fetzer Institute, 36

Financial issues, see Cost and cost-effectiveness;

Economics;

Funding;

Health Care Financing Administration;

Health insurance;

Medicare

Food and Drug Administration, 80, 180

Freyer, David, 161–198

Friebert, Sarah, 161–198

Functional Assessment of Cancer Therapy, 19

Funding, 7–8, 10–11, 13, 14, 31–32, 33, 36, 37, 40, 43, 45, 48, 62, 63, 116, 263–266

African Americans, 157, 158

children with cancer, 165, 167, 175, 176

cognitive impairment research, 253

demonstration projects, 6, 7, 39, 43, 51, 52, 107, 120, 157, 158, 239

distress management, 233, 234, 235, 243–244, 247–248, 250, 254, 256–257, 262, 263–264

dyspnea research, 254

fatigue research, 256–257

foundations, 17–19, 36, 37–40, 63, 136, 138, 157, 306

Robert Wood Johnson Foundation, 17–19, 36, 37–39, 45, 136, 138, 146, 177, 241–242, 263–264, 294–295, 298

NCI, 5–6, 29–30, 33, 36, 40, 43, 45, 48–49 , 50, 55–61, 62, 63, 80, 107, 109, 110, 113, 116, 122, 135, 138, 158, 177, 263, 266–268, 295–296, 305, 308

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
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CRISP database, 236, 243–244, 247–248 , 250, 253, 254–255, 256–257 , 258, 261

professional education, 16, 40, 42, 63, 278, 293–297, 302, 306–308

fellowships, 6, 46, 50, 165, 167, 243–244, 294, 307

psychiatric and affective symptoms, 261

surveys, 106

G

Gastrointestinal system, 35, 81, 108, 185, 236, 257–259

see also Colorectal cancer;

Nausea and vomiting

bowel obstruction, 35, 224, 257, 258

clinical trials, 258–259, 267

patient/family education, 140

Gelband, Hellen, 277–310

Gender factors

see also Breast cancer

African Americans, 153

anxiety, 109–110

Internet users, 148

ovarian cancer, 28–29, 109, 140, 144–145 , 237

pain management, 238

prostate cancer, 17, 68, 78–79, 103, 109, 202, 237, 248

Geographic variation, 89, 91, 92, 136, 175, 177, 241

access to care, 29–30, 85, 90, 175

children with cancer, 175, 177

deaths by state, 104

hospices, Medicare, 85

rural areas, 19, 157, 175

urban areas, 27, 157

Get Relief from Cancer Pain, 28, 139

Grief and bereavement, 14, 20, 26, 71, 74–75 , 88, 97, 106, 114, 115, 118, 124, 133, 139, 166, 206–207, 290, 299, 301

children with cancer, 163, 166, 179, 191

Guidelines for Cancer Pain Management, 242

Guidelines for Establishing Comprehensive Cancer Patient Education Services, 134

H

Harrison’s Principles of Internal Medicine, 285, 286

Health Care Financing Administration, 6, 36, 51, 62, 89, 90, 122

see also Medicare

children with cancer, 183–184

Medicaid, 70, 72, 91, 188, 189

Minimum Data Set, 26, 98, 121, 239

pain management, 107

patient decisionmaking, 113

quality of care indicators, 26, 98, 107

Health insurance, 6–7, 13, 15–16, 51, 70, 76–77, 91, 139

see also Medicare

capitation, 71, 91, 113

children, 6–7, 16, 164, 175, 177–178, 182–191, 193

Medicaid, 70, 72, 91, 188, 189

physicians’ perceptions of, 47

psychosocial care, 209, 219, 222

Health maintenance organizations, 71

Health Resources and Services Administration, 89, 90, 92

Hilden, Joanne, 161–198

Himelstein, Bruce, 161–198

Hispanics, 140, 142

Historical perspectives, 3, 9, 33, 37, 38

African Americans, 154–155, 159

cause of death from cancer, sites, 103

home care, 102, 103, 104

hospice care, 15, 33, 75, 104

Medicare, 70

minorities, 27

professional education, 279

quality indicators, 96, 100, 102, 103

Holland, Jimmie, 199–232

Home care, 28, 79, 84, 87, 91–92, 104, 139, 289

children, 174, 175, 188

hospice care, Medicare gap between and, 75–76

physicians’ perceptions of, 47

Hormonal influences, 34, 248, 250, 256, 257, 260, 261

Hospice care, 4, 12, 13, 14, 17, 18, 30, 49, 50, 139, 281, 289

African Americans, 26–27, 154–155, 156

American Academy of Hospice and

Palliative Care, 164, 165, 184

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
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children, 162, 164, 165–166, 167, 169, 174, 178, 179, 181, 184, 186–191

clinical practice guidelines, 201

definitional issues, 15, 49, 73–74, 113–119

financing, 42, 69, 71–76, 84, 87, 88, 90, 92, 184, 186–188

Medicare, 14–15, 33, 36, 43, 69, 70, 71–73, 75–76, 84–85, 90, 122, 153, 190

historical perspectives, 15, 33, 75, 104

home care, Medicare gap between and, 75–76

minorities, 26–27, 154–155, 156

National Hospice Organization (NHO), 84–85, 114, 123, 143, 154

pain management, 36

physicians and, 15, 47, 75, 154

training of workers, 6, 51, 296, 297

Hospital Elderly Longitudinal Project (HELP), 37, 38, 39

Hydration, see Dehydration and hydration

Hypnosis, 246–247

I

Information dissemination, see Computer applications;

Confidentiality and privacy;

Internet;

Intranets;

Patient education;

Professional education;

Public information;

Telephone services

Informed consent, 163, 170–173

do-not-resuscitate orders, 38–39, 111, 112, 155, 189, 192, 241–242

Insomnia, see Sleeping disturbance

Insurance, see Health insurance

Intensive care units, 17, 39, 81, 122, 155

Interferon, 256

International Classification of Diseases, 122

Internet, 28, 30, 40, 44, 45, 48, 102, 132, 139, 144, 146–149, 150–151, 296, 298

children with cancer, 177–178

Consumer Assessment of Health Plans Survey, 122

cost of care, 83

gender factors, 148

Intranets, 8, 52

J

Joint Commission on Accreditation of Healthcare Organizations, 24, 44, 165, 293, 308

K

Kane, Javier, 161–198

Kesselheim, Aaron, 132–152

Kidney cancer, 143, 144

L

Language factors, 29, 139, 140, 142, 206

children with cancer, 167

Medicare, 70

Last Acts program, 39, 136

Legal issues, 299

see also Confidentiality and privacy;

Litigation;

Regulatory issues

Legislation, 135, 181

Advanced Planning and Compassionate Care Act, 143

Conquering Pain Act, 136

Jim Crow, 27, 155

Patient Self-Determination Act, 111, 139, 241

Public Health Service Act, 136

Liaison Committee on Medical Education, 279–280, 281

Litigation, 120

Living wills, see Do-not-resuscitate orders

Lung cancer, 29, 47, 76–77, 80, 81, 83, 103, 107, 240–241, 285

clinical practice guidelines, 202

dyspnea, 108, 253

patient/family education, 141, 143

Lynn, Joanne, 67–95

M

Management of Cancer Pain, 32

Manual of Medical Therapeutics, 285

Mayo Clinic Family Health Book, 285, 286

Medicaid, 70, 72, 91, 188, 189

Medicare, 10, 31, 43, 67, 69, 70–71, 84, 86, 92, 98, 122

African Americans, 154

capitation, 71, 91

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

claims, 7, 26, 31, 51, 85, 98, 121, 122

drug treatment, 79, 80, 86, 90

hospice care, 14–15, 33, 36, 43, 69, 70, 71–73, 75–76, 84–85, 90, 122, 153, 190

Minimum Data Set, 26, 98, 121, 239

pain management, 107

prostate cancer, 79

quality indicators, 26, 98, 107

Medicare Payment Advisory Commission, 43, 85, 89, 153

Medicaring, 91

Medication, see Chemotherapy;

Drug treatment

MEDLINE, 83

Memorial Sloan-Kettering Cancer Center, 158–159, 203, 296

Memorial Symptom Assessment Scale, 110, 237

Memory deficits, 238, 244, 251, 252

Merck Manual, 285

Milbank Foundation, 40

Minimum Data Set, 26, 98, 121, 239

Minority groups, see Race/ethnicity

Mental health and illness

see also Anxiety;

Depression delirium and dementia, 21, 34–35, 133, 200, 204, 215–216, 244, 251–253 , 285–286

personality disorders, clinical practice guidelines, 22, 23, 204, 215–216, 217

Myths and Facts About Ovarian Cancer, 145

N

Nathan Cummings Foundation, 36, 40

National Advanced Illness Coordination Care program, 178

National Association of Breast Cancer Organizations, 143, 144

National Association of Children’s Hospitals and Related Institutions, 186

National Brain Tumor Association, 144, 146

National Cancer Institute (NCI), 5–8, 11, 13, 17, 28–29, 30, 42, 45, 50–53, 96, 109, 116, 265

African Americans, 158

anxiety and depression studies, 110

cancer centers, 5–6, 29–30, 50, 123, 133–134 , 135–136, 137–138, 147, 150, 158, 206

Cancer Information Service, 139, 141, 145

clinical trials, 6, 17, 28, 80, 267–269

Cooperative Oncology Groups (COGs), 60–61, 112, 238, 239, 244, 268

cost of care, 80, 83, 90

Ensuring Quality Cancer Care, 4, 12, 24, 40, 96, 99, 105, 123, 200

funding, 5–6, 29–30, 33, 36, 40, 43, 45, 48–49, 50, 55–61, 62, 63, 80, 107, 109, 110, 113, 116, 122, 135, 138, 158, 177, 263, 266–268 , 295–296, 305, 308

CRISP database, 236, 243–244, 247–248 , 250, 253, 254–255, 256–257 , 258, 261

pain management, 28, 107, 138

patient decisionmaking, 112, 113

patient education, 28, 133–134, 135–136 , 137, 138–142, 144, 145, 150

Surveillance, Epidemiology, and End Results Program (SEER), 63, 64, 122, 153

National Cancer Institute of Canada, 259–260

National Center for Health Statistics, 89, 102

National Coalition for Cancer Survivorship, 147

National Comprehensive Cancer Network (NCCN)

clinical practice guidelines, 21–23, 81, 201, 202, 203, 204–205, 209–212 , 214, 218, 220, 224, 225, 242

National Council of State Boards of Nursing, Inc., 298, 302

National Hospice Organization (NHO), 84–85 , 114, 123, 143, 154

National Institute of Allergy and Infectious Diseases, 45

National Institute of Nursing Research, 8, 45, 48, 52, 96

National Institutes of Health, 8, 13, 45, 48–49 , 53, 89, 171, 244–245, 264, 265, 267

see also National Cancer Institute

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

CRISP database, 236, 243–244, 247–248 , 250, 253, 254–255, 256–257 , 258, 261

National Institute on Aging, 96, 113

National Kidney Cancer Association, 143

National League of Nursing, 298

National Mortality Followback Survey (NMFBS), 26, 97, 102, 104, 106

National Ovarian Cancer Coalition, 144–145

National Program of Cancer Registries, 63, 64

Nausea and vomiting, 3, 10, 23, 35, 45, 49, 108, 203, 205, 213, 222, 236, 257–259, 267

chemotherapy, 257–258

children, 180

patient/family education, 133, 134

physicians’ perceptions of, 46

NCCN, see National Comprehensive Cancer Network

Neurotransmitters, 246, 248, 258, 260, 266–267

NHO, see National Hospice Organization

Nurses, 5, 6, 17, 20, 39, 41, 50, 75, 210, 213, 242

children with cancer, 164, 166, 188, 190

National Institute of Nursing Research, 8, 45, 48, 52, 96

Oncology Nursing Society, 7, 52

pain management, 134, 242, 299, 300, 302

patient education, 134, 135

professional education, 278, 297–301, 302, 305

Nursing Home Minimum Data Set, 26, 98, 121, 239

Nursing homes

see also Hospice care

financing, 90–91

Medicare, 15, 72, 85

hydration, 121

Minimum Data Set, 26, 98, 121, 239

pain management, 106, 239, 299

patient education, 29

quality of care indicators, 26, 98, 103

Nutrition, 28, 119, 169, 180, 186, 213, 256

see also Anorexia and cachexia;

Weight loss

O

O’Mara, Ann, 67–95

Oncology Nursing Society, 7, 52

Open Society Institute, 159

Opioids, 15, 27, 34, 35, 57, 75, 79, 86, 87, 180, 239, 247, 251, 253, 254, 255, 265, 300

Ovarian cancer, 28–29, 109, 140, 144–145, 237

P

PACE, see Program of All-Inclusive Care for the Elderly

Pain and pain management, 3, 10, 25, 28, 32, 34, 39, 42, 45, 48, 49, 53, 100, 106–107, 108, 115, 116, 237, 242–248

see also Nausea and vomiting

African Americans, 158–159

anxiety and, 106, 222, 223–225, 236–237 , 238

children, 162, 164, 169, 177, 179–182, 184, 192

clinical practice guidelines, 22, 23, 36, 134, 203, 205, 213, 216, 222, 224–225, 242–243, 245, 247

clinical trials, 28, 32, 83, 242–243, 245, 246, 247, 248–249

cost of care, 75, 79–80, 81, 83

depression and, 106, 216, 224–225, 255

drug treatment, 34, 44, 49, 75, 79–80, 86, 107, 113, 117–118, 119, 143–144 , 163, 169, 180, 208, 224, 225, 238, 246, 247

opioids, 15, 27, 34, 35, 57, 75, 79, 86, 87, 180, 239, 247, 251, 253, 254, 255, 265, 300

family influences, 22, 25, 118, 133, 136–137 , 143, 240, 243

gender factors, 238

Minimum Data Set, 121

NCI efforts, 28, 107, 138

nursing, 134, 242, 299, 300, 302

nursing homes, 106, 239, 299

patient/family education, 22, 25, 44, 117–118, 133, 136–137, 143, 240, 243;

see also Behavioral interventions

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

physicians, 46, 106, 134, 239

professional education, 280, 297

racial/ethnic factors, 238

standards, 44–45, 97, 98, 100, 118, 120, 179–180;

see also “clinical practice guidelines” supra

Pain Control, 28

Palliative Care Program, 17–18

Pastoral counseling, 22, 188, 205, 208, 209, 210, 214, 218, 219, 221

Patient education, 5, 7, 18, 26, 27–30, 115, 132–152, 242

see also Counseling;

Decisionmaking;

Social workers

breast cancer, 140, 143

children, 163, 166, 168–169, 177

clinical practice guidelines, 28, 203, 206–207 , 208, 219, 221, 222, 223, 227

cultural influences, 7, 51, 92, 154, 156, 159

language factors, 29, 70, 139, 140, 142, 167, 206

drug treatment, 29, 140, 143

families, 124, 132–152, 161–162, 168–169 , 172, 192, 193, 203, 206–207 , 208, 213, 214, 221, 223, 227

NCI efforts, 28, 133–134, 135–136, 137, 138–142, 144, 145, 150

nurses, 134, 135

pain management, 22, 25, 44, 117–118, 133, 136–137, 143, 240, 243;

see also Behavioral interventions

standards, 142, 221;

see also “clinical practice guidelines” supra

telephone services, 28, 132, 139, 141, 142–143, 186

Patient satisfaction, 24, 25, 38, 67, 97, 115, 117–118, 119, 124, 150

see also Decisionmaking

Patient Self-Determination Act, 111, 139, 241

Payne, Richard, 153–160

Pediatric care, see Children

Personality disorders

clinical practice guidelines, 22, 23, 204, 215–216, 217

Physician Data Query, 28, 139

Physicians, 5, 17, 39, 41, 43–44, 46–47

African Americans and, 154, 156

anxiety suffered by, 46

children with cancer, 164, 165, 166, 169, 174, 175, 177, 179, 180, 182–183, 186–188, 191

clinical practice guidelines, 21, 201, 204, 206–207, 209, 210, 222, 223

cost of care, 81, 82, 87, 182–183, 186–188 , 191

decisionmaking shared with patient and family, 111–112, 119, 241–242

education by, 28, 29, 133–135, 136, 154, 156, 182, 201, 204, 207, 222, 223

education of, 16, 20, 29, 39, 42, 44, 50, 164, 165, 166, 169, 175, 180, 207, 209, 213–214, 277, 278–297 , 305

euthanasia, 36, 47, 156, 207, 235

hospice care, 15, 47, 75, 154

Internet support, 147

number involved in care, 122

pain management, 46, 106, 134, 239

patient preferences, 38

prescriptions, 87

President’s Cancer Panel, 40, 42–43

Principles and Practice of Medicine, 285

Principles of Care of Patients at the End of Life: An Emerging Consensus About the Specialties of Medicine, 40

Privacy, see Confidentiality and privacy

Professional education, 4, 5, 6, 10–11, 13, 14, 16, 20, 30, 41, 42, 44, 46, 50, 141, 213–214, 218, 221, 242, 277–310

see also Clinical practice guidelines

African Americans, treatment of, 154

children with cancer, 163, 164–168, 175–176, 193

costs, general, 67, 92

funding, 16, 40, 42, 63, 278, 293–297, 302, 306–308

fellowships, 6, 46, 50, 165, 167, 243–244, 294, 307

hospice workers, 6, 51, 296, 297

nurses, 278, 297–301, 302, 305

pain management, 280, 297

textbooks, 166, 278, 284, 285–288, 292, 295, 298, 299, 300, 302, 304, 306, 308

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

Professionals

see also Clinical practice guidelines;

Nurses;

Patient education;

Physicians;

Social workers

attitudes of, 46, 137, 221, 266, 288–289 , 290, 291

economic issues, general, 67–68

Program of All-Inclusive Care for Children, 178

Program of All-Inclusive Care for the

Elderly (PACE), 87, 91, 92

Project ENABLE, 18

Project on Death In America, 36, 40, 294

Project Safe Conduct, 18–19

Prostate cancer, 17, 68, 78–79, 103, 109, 202, 237, 248

Protocols, see Clinical practice guidelines;

Standards

Psychometrics, 101, 102

Psychosocial influences, 3, 5, 10, 11, 19, 35, 114, 287

see also Anxiety;

Depression;

Emotional

influences;

Family influences;

Mental health and illness;

Personality disorders;

Religious and other spiritual influences

behavioral interventions, 83, 234, 236, 246–247, 257, 258

children with cancer, 162, 169, 170

clinical practice guidelines, 22, 52, 200, 203, 208, 209, 215–218, 219, 223–224, 227–228

confusion, 3, 6, 10, 21, 108, 215, 244

counseling, 14, 20, 22, 29, 30, 49

insurance for care, 209, 219, 222

patient/family education, 132–133, 143

Public Health Service Act, 136

Public information, 5, 6, 7, 13, 41

Public opinion, 36, 41, 42, 106, 114, 140, 207

African Americans, 155–156

Q

Quality improvement (QI) measures, 24, 43, 64, 92, 100–101, 109, 123, 137

R

Race/ethnicity, 4, 6, 14, 19, 26–27, 50, 89, 206

African Americans, 4, 5, 14, 26–27, 153–160

Hispanics, 140, 142

Internet users, 148

language factors, 29, 140

pain management, 238

Radiation therapy, 11, 236, 237

cognitive impairments, 252

cost of, 76–77, 81

dyspnea and, 253

lung cancer, 76–77, 81

nausea and vomiting, 257–258

patient decisionmaking, 112, 113

patient/family education, 141

Ralph Lauren Foundation, 157

Referral to care, 4, 12, 21, 30, 74, 86, 105, 136

children, 174, 175, 178

Registries, 7, 62, 63, 64, 102

Regulatory issues, 41

see also Accountability;

Legislation;

Standards

children, 163–167 (passim), 171, 182–191 , 193

Food and Drug Administration, 80, 180

Reimbursement, see Health insurance;

Medicaid; Medicare

Relaxation therapy, 246, 257

Religious and other spiritual influences, 20, 32, 114–115, 134

African Americans, 154

children, 162, 166, 169

clinical practice guidelines, 22, 200, 203, 205, 206, 208, 209, 210, 212, 213, 214, 221, 223–224, 228

pastoral counseling, 22, 188, 205, 208, 209, 210, 214, 218, 219, 221

Resident Assessment Instrument, 239

Respiratory system, 38, 242

see also Dyspnea;

Lung cancer

Respite services, 71, 86, 91, 179, 191

Robert Wood Johnson Foundation, 17–19, 36, 37–39, 45, 136, 138, 146, 177, 241–242, 263–264, 294–295, 298

Rural areas, 19, 157, 175

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

S

Scientific American Medicine on CD-ROM, 285

SEER, see Surveillance, Epidemiology, and End Results Program

Sleep disturbance, 133, 213, 238, 256

Social influences, ix–x, 37–38, 114

see also Community influences and programs;

Cultural influences;

Family influences;

Psychosocial

influences;

Race/ethnicity

children, 162, 170

clinical practice guidelines, 22, 205, 209, 214, 218, 223–224

distress, 236

public opinion, 36, 41, 42

Social workers, 5, 6, 7, 17, 20, 41, 52, 134, 142–143, 205, 208, 210, 214, 218, 278, 301–305

see also Counseling

children with cancer, 164, 166, 184

Society for Social Work Oncology, 7, 52

Society for Surgical Oncology, 202

Socioeconomic status, 4, 14, 158

see also Race/ethnicity

Solid Tumors, 140

Spanish persons, see Hispanics

Spiritual influences, see Religious and other

spiritual influences

Standards, 4, 7, 13, 14, 19, 34–35, 40, 41, 42, 44–45, 52, 96–125, 298, 307–308

see also Accountability;

Clinical practice guidelines;

Definitional issues;

Regulatory issues

cancer stage/comorbidity reporting, 63

children with cancer, 164–165, 166, 169, 172–173, 175, 179–180

cost issues, 67, 89

delirium assessment, 34, 253

dyspnea assessment, 35, 254

Joint Commission on Accreditation of

Healthcare Organizations, 24, 44, 165, 293, 308

nurses, 302

pain management, 44–45, 97, 98, 100, 118, 120, 179–180

patient/family education, 142, 221

State government role, 41, 89, 181, 302

patient education, 29

registries, 7, 62, 63, 64, 102

Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), 37–39, 45, 111–112, 116–117, 122, 135, 225, 237, 240, 241, 268

Suicide, 106, 109, 110

euthanasia, 36, 47, 156, 207, 235

Surgery, 11, 70, 81, 112, 202, 253, 287

Surveillance, Epidemiology, and End Results Program (SEER), 63, 64, 122, 153

Suvivorship, 9, 10, 132, 268

costs of prolonging life, 76, 86

dyspnea, 108

family members, 124;

see also Grief and bereavement

information on, 7, 140

lung cancer, 76

T

Telephone services, 28, 132, 139, 141, 142–143, 186

Teno, Joan, 24, 96–131

Textbooks, 166, 278, 284, 285–288, 292, 295, 298, 299–301, 302, 304, 306, 308

THC, see Dronabinol

U

Understanding Cancer Pain, 139

The Unequal Burden of Cancer, 158

United Hospital Fund, 158–159

Urban areas, 27, 157

V

Veterans Health Administration, see Department of Veterans Affairs/Veterans Health Administration

Vomiting, see Nausea and vomiting

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2001. Improving Palliative Care for Cancer. Washington, DC: The National Academies Press. doi: 10.17226/10149.
×

W

The Washington Manual, 285, 286

Weight loss, 26

see also Anorexia and cachexia;

Nutrition

What You Need to Know About Ovarian Cancer, 28–29, 140

When Cancer Recurs: Meeting the Challenge Again, 140

World Health Organization (WHO), 11, 22, 42, 107, 180, 201, 205, 224, 242

World Wide Web, see Internet

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Improving Palliative Care for Cancer Get This Book
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In our society’s aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institute’s budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriers—scientific, policy, and social—that keep those in need from getting good palliative care.

It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.

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