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



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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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

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Improving Palliative Care for Cancer 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