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
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
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
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
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
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
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
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
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
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
geographic variation, 175, 177
grief and bereavement, 163, 166, 179, 191
health insurance, 6–7, 16, 164, 175, 177–178, 182–191, 193
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
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
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
Community influences and programs, 5–6
children with cancer, 175–176, 179
clinical practice guidelines, 202
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
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
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
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
decisionmaking, 78–79, 86, 87–88
definition, 82
drug treatment, 75, 79, 80, 81, 86, 87, 89, 90;
see also “chemotherapy” supra
financial burden of care, general, 10, 30, 41, 48, 67–95, 114, 153, 158, 175, 184–185, 208
nursing homes, financing, 90–91
pain management, 75, 79–80, 81, 83
physicians, 81, 82, 87, 182–183, 186–188 , 191
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
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
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
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
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
clinical practice guidelines, 21, 200, 204, 208, 209–214, 216, 224–225, 227
drug treatment, 110, 216, 255, 259–261
pain and, 106, 216, 224–225, 255
patient/family education, 133
physicians’ perceptions of, 46
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
Drug Enforcement Administration, 225
see also Chemotherapy
bowel obstructions, 259
cachexia, 249–250
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
dyspnea, 108, 226–227, 253, 254
emotional distress, 110, 216, 255, 259–261
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
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
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
distress, 234, 236–241, 243, 245, 259–260
Surveillance, Epidemiology, and End Results Program, 63, 64, 122, 153
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
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
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
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
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
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
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
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
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
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
Historical perspectives, 3, 9, 33, 37, 38
African Americans, 154–155, 159
cause of death from cancer, sites, 103
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
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
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
J
Joint Commission on Accreditation of Healthcare Organizations, 24, 44, 165, 293, 308
K
Kane, Javier, 161–198
Kesselheim, Aaron, 132–152
L
Language factors, 29, 139, 140, 142, 206
children with cancer, 167
Medicare, 70
Legal issues, 299
see also Confidentiality and privacy;
Litigation;
Regulatory issues
Advanced Planning and Compassionate Care Act, 143
Conquering Pain Act, 136
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
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
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
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
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
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
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
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
nursing, 134, 242, 299, 300, 302
patient/family education, 22, 25, 44, 117–118, 133, 136–137, 143, 240, 243;
see also Behavioral interventions
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
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
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
pain management, 22, 25, 44, 117–118, 133, 136–137, 143, 240, 243;
see also Behavioral interventions
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
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
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
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
textbooks, 166, 278, 284, 285–288, 292, 295, 298, 299, 300, 302, 304, 306, 308
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
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
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
Internet users, 148
pain management, 238
Radiation therapy, 11, 236, 237
cognitive impairments, 252
dyspnea and, 253
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
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
Religious and other spiritual influences, 20, 32, 114–115, 134
African Americans, 154
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
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
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
clinical practice guidelines, 22, 205, 209, 214, 218, 223–224
distress, 236
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
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
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
costs of prolonging life, 76, 86
dyspnea, 108
family members, 124;
see also Grief and bereavement
lung cancer, 76
T
Telephone services, 28, 132, 139, 141, 142–143, 186
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
V
Veterans Health Administration, see Department of Veterans Affairs/Veterans Health Administration
Vomiting, see Nausea and vomiting
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