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--> Index A Abandonment, and fear of dying, 15, 210 Academy of Hospice Physicians, 322 Access to care barriers to, 135-136 hospice care and, 102-103 managed care and, 3, 162-163, 177-178 undertreatment of patients and, 126 Accountability defined, 123-124 for education and training, 9, 207 ethical standards, 124 health care organizations, 8, 267 hospitals, 99 initiatives, 51, 337-338 market mechanisms of, 124 physicians, 122 public, 124 recommendations, 8, 9, 267-268 regulatory mechanisms, 124 research needs, 2 in whole-community model of care, 9, 10 Accreditation Council for Graduate Medical Education, 223 Acute illness, 14, 34, 52 Addiction. See also Prescription drugs definitions, 193, 197 drug tolerance and physical dependence distinguished from, 193-194 Advance care planning. See also Patient/family preferences concept, 198-199 and costs of health care, 175-177 culture and, 370, 375 demonstration projects and initiatives, 19, 20, 330-331 do-not-resuscitate orders, 199 elements of, 66-68 incentives for, 134, 176 issues to be raised in, 68-72 legal issues, 16, 198-203 in nursing homes, 107-108 organizational systems for, 71-72 processes for, 71-72, 175, 200 and quality of care, 140, 266 recommendations, 7, 9, 266 research on, 68 values and beliefs and, 66, 67, 72 written directives, see Advance directives Advance directives and assisted suicide, 176 attitudes about, 45, 46 clinician characteristics and, 70-71 and cost containment, 154, 175-177 cultural issues, 371 effectiveness of, 72, 200, 201-203

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-->   form, 108, 119-121, 198-203 from informed patients, 68 intensive care history and, 68 issues to be raised with patients, 66 nursing home patients, 100 socioeconomic characteristics of patients and, 70 Advocacy, 255, 337-338 African Americans. See Blacks Age attitudes about, 48-49 and cause of death, 2, 34 and chronic illness, 14 and death rates, 34-35, 248, 260-261 and disability, 43-44 and financing of health care, 156, 158 life expectancy at birth, 35-36 and outcome measures of care, 139 population patterns, 3, 36-37 and rationing of care, 154, 181-182, 262 and site of death, 39, 40, 41 and symptoms of death, 43-44, 248 Agency for Health Care Policy and Research (AHCPR), 12, 132, 151, 257, 269, 270 Agency for HIV/AIDS, 321 AIDS patients, 17, 76, 77, 78, 128, 131, 155, 168 n.10, 195, 240, 256, 356 Alaskan Natives, 37 Alliance for Aging Research, 327-328 Alzheimer's Association, 321 Alzheimer's disease, 52, 53, 93, 99, 148, 158, 168 n.10 American Academy of Family Physicians, 322 American Academy of Hospice and Palliative Medicine, 20, 226, 328-329 American Academy of Hospice Physicians (AAHP), 164 n.9 American Academy of Neurology, 323 American Academy of Pediatrics, 321 American Alliance of Cancer Pain Initiatives, 322 American Association of Health Plans, 323 American Association of Homes and Services for the Aging, 323 American Association of Retired Persons (AARP), 44-45, 324 American Bar Association Commission on Legal Problems of the Elderly , 324 American Board of Hospice and Palliative Medicine (ABHP), 223, 324 , 328-329 American Board of Internal Medicine (ABIM), 20, 208, 210, 217, 222 , 223, 226-227, 322, 329-330 American Board of Medical Specialties, 330 American Cancer Society, 321 American College of Physicians, 73-74, 329 American Geriatrics Society, 139, 140-141, 204 n.10, 322, 337, 390 American Hospice Foundation, 324 American Hospital Association, 323 American Indians, 37, 70 n.2 American Medical Association (AMA), 19, 20, 193, 197, 208, 232, 322 , 330-331 American Medical Directors Association, 151, 324 American Nurses Association, 204 n.10, 322 American Pain Society, 126, 127, 323 American Psychiatric Association, 191, 204 n.10 Americans for Better Care of the Dying, 327 Amyotrophic lateral sclerosis (ALS), 52, 342 Anesthesiology, 209, 217 Angina pectoris, 150, 220 Anorexia-cachexia syndrome, 76, 241. See also Cachexia-anorexia-asthenia syndrome Anxiety, 78, 237, 243, 250. See also Fear of dying APACHE system, 358-362 Aplastic anemia, 92-93 Appropriateness of care. See also Clinical practice guidelines advance directives and, 176-177 case histories, 90-95 determinants of, 118, 134 guidelines, 333-334 uncertainties and disagreements about, 21-22 Arizona, 113 Artificial nutrition and hydration, 134 Asians and Pacific Islanders, 37, 375-376 Ascites, 77 Assessment. See Patient assessment Assisted suicide advance directives and, 176 attitudes about, 45, 251 committee position, 13, 270-271 defined, 203 depression and, 75 and end-of-life care initiatives, 16, 19, 32, 176, 259-260, 270-271, 388

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-->   ethical issues, 335 fear of overtreatment and, 15, 134 legal issues, 188, 203-206 litigation, 16 n.1, 19, 188, 203-204, 337 Oregon, 19 research, 251 Association of Academic Health Centers, 324 Association of Academic Medical Centers, 331-332 Association of American Medical Colleges (AAMC), 329 Association of Palliative Medicine of Great Britain and Ireland, 31 n.4 Association of Professors of Medicine (APM), 329 Association of Program Directors in Internal Medicine, 329 Asthenia, 76, 128, 240 Attitudes about dying. See also Fear of dying advance directives, 45, 46 assisted suicide, 45, 251 cultural differences in, 46, 47, 48-49 education aimed at altering, 45, 349-350 life-prolonging treatments, 46 measurement instruments, 44, 396 media influence, 6-7, 12-13, 14-15 opinion polls, 44-45 patient preferences for care, 45-46 race/ethnicity and, 46 research, 44, 45, 254 Australia, 224, 232 Autonomy, patient, 48, 63, 140, 198, 205, 251-253, 370, 376 B Baby boom generation, 3, 37, 43, 182, 260-261 Barnard College, 332 Baystate Medical Center, 332-333 Beneficence principle, 48 Benign prostatic hypertrophy, 51 Bereavement coordinator, 110 education and training on, 230-231 inner-city youth, 337 interventions, 141, 337, 343 organ donation and, 332 research, 250 support groups, 2 Biomedical research, 6, 236-244, 255-256, 265 Birth rates, 34-35, 50-51 Bisphosphonate, prophylactic, 84 Blacks, 36, 37, 38, 46, 70, 371 Bladder cancer, 158 Bowel function, 77, 130, 239 Brain death, 27, 56, 372 Brain tumor, 58-59, 92 Breast cancer, 51, 84, 95 C Cachexia, 241 Cachexia-anorexia-asthenia syndrome, 84, 132, 240-241, 242 California, 113, 191, 194, 196, 197, 200-201, 325, 347-349, 372 Canada, 224 Canadian Palliative Care Curriculum, 222, 407-408 Cancer patients. See also specific sites of neoplasms assessment of, 334-335 attitudes of, 46 children, 349 cure-to-care transition, 83, 85 deaths, 14 diagnosis, 374-380 expenditures, 158 family caregivers, 339 home care guide, 73-74 hospice care, 102, 109, 168 n.10, 169 pain management, 84, 126, 127, 128, 131, 132, 133, 150, 237, 242, 256, 356 prolonged survival after diagnosis, 78 research, 237, 256, 334-335 site of death, 39, 100 symptoms of dying, 42, 52, 76, 77, 128, 129-131, 143, 237, 240 treatment of, 126, 127, 131, 230, 237, 256, 374-379 Cardiopulmonary resuscitation, 68, 72 n.3, 83, 134, 199. See also Intensive care units; Life-prolonging care/technologies Cardiovascular disease, 52, 54, 258 Caregivers denial and emotional distancing, 42 family as, 2, 73, 105, 108, 173, 231

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-->   informal, 90, 105 primary, 231 respite programs for, 10, 81, 91 Caregiving. See also End-of-life care; Palliative care reform initiatives, 50-51 Caring function of medicine, 51 Case histories as educational tools, 220, 251, 346-347, 374-380 palliative care, 346-347 quality of care and care settings, 90-95, 182 trajectories of dying, 53-59 Catholic Church, 79 Catholic health care, 19, 349-350 Causes of death, 248, 260 age and, 2, 34, 37-38 and expenditures for health care, 157-158 infants, 38 leading, 37, 256 in nursing home patients, 100 race and, 37-38 Center for Biomedical Ethics, University of Minnesota, 326 Center for Ethics in Health Care, Oregon Health Sciences University , 326 Certification of special competence, 227 Chaplains, 65, 79 Chemoimmunotherapy, 90 Chemotherapy, 84, 237 Childbirth, 50-51, 264, 266 Children bereavement, 337 case histories, 55-56 communication with, 64, 65, 349 ending life-sustaining efforts, 349 research, 248, 256-258, 349 surrogate decisionmakers, 201-202 trajectories of dying, 55-56 Choice on Dying, 324 Chronic illness case histories, 55-56 children, 55-56 crises, 28 financial aspects of, 178, 179 health care system challenges, 14, 34, 37, 242-248 home care, 105 Chronic obstructive pulmonary disease, 40-41, 43, 84-85, 105, 129, 158, 182, 240, 243 Cirrhosis, 43, 129 City of Hope National Medical Center, 326, 338 Clerkship Directors in Internal Medicine (CDIM), 329 Clinical practice guidelines, 10, 132, 149-152, 189, 222, 245, 373 Clinicians. See also Health care professionals; Nurses and nursing care ; Patient-clinician relationship; Physicians; Professional education and training characteristics, 70-71 palliative care, 3 recommended role, 8, 267 spiritual role, 79 Cognitive impairment, 42, 53-54, 63-64, 74, 80, 93-94, 143, 243-244, 253 Colon cancer, 43, 129 Colorado Collective for Medical Decisions, 333-334 Coma, 43, 46, 134 Comfort care, 32 n.6. See also Palliative care Commonwealth Fund, 18 Communication with patients and families clinician-patient, 12-13, 59-66, 347-349, 354, 374-379 goal-setting and planning, 64-72 media, 6-7, 12-13, 251 practical assistance, 81 preparation, 62, 117 recommendations, 12-13, 270-271 reform initiatives, 51, 354 talking about dying, 6-7, 182, 265-266 technologies, 262 Community consensus-based rationing, 182-184 education, 107 support services, 80 Community health care systems. See also Hospice care defined, 90 futility guidelines, 180 initiatives to improve care, 18-20 reforms, 89 whole-community model, 9, 11, 116-118, 267-268 Confusion and confusional states, 77, 84, 129, 130, 237, 243 Congenital defects, 30, 55-56, 240 Congestive heart failure, 43, 56-57, 86, 93-94, 105, 129, 240, 243

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-->   Connecticut, 15, 40 Continuous quality improvement (CQI), 126, 137, 139, 151 Controlled Substances Act, 193 Coordination and continuity of care home hospice teams, 108-111 impediments to, 6, 91-92, 94-95 inpatient teams, 111-113 interdisciplinary palliative care, 108-113 managed care and, 113-116 professional preparation for, 11 and quality of care, 141 transition procedures, 107-108 in whole-community model, 10 Coronary artery diseases, 128 Cost of care. See Financial and economic issues; Health care cost reduction; Health care expenditures Cough, 76 Crohn's disease, 50 Culpeper Foundation, 18 Cultural sensitivity in care. See Race/ethnicity; Sociocultural issues and bioethics practices, 369-372, 373 case histories, 374-380 concept, 365-366 education, 250-251, 373-374 legislation, 372 palliative care initiative, 354 recommendations, 372-374 research, 372-373 Curative care, 84, 105 n.4, 136 Cystic fibrosis, 30 D Dartmouth College, 334 Day-care services, 10, 106 Deaf patients, hospice care for, 357 Death. See also Brain death; Cause of death approaching, 27 "bad,"; 4, 24 in clinical trials, 256 defining, 27 dignified, 24-25 "good", 4, 24, 96, 137, 152, 333 legal definition, 27 location of, see Site of death premature, 30 rates and trends, 3, 34-37, 88, 260-261 sudden, 24, 28, 246 Death Attitude Profile-Revised, 44 Death with Dignity, 324 Decision support systems, 222 Definitions and concepts accountability, 123-124 "bad death,"; 4, 24 brain death, 27, 56, 372 diagnosis, 30 dignified death, 24-25 end of life, 26-27 "good death,"; 4, 24, 137, 152 futility, 179-180 hospice, 30-31 long-term care, 105 n.4 managed care, 113 pain, 26 palliative care, 31-32, 86 prognosis, 30 quality of care, 25, 124-125 quality of dying, 25 quality of life, 25 rationing, 180 suffering, 26 symptom, 26 Dementia, 40-41, 76, 77, 251, 402-404 Demonstration projects. See also specific projects clinical, 232 components, 19 culture and experience of dying, 340 palliative care, 352-353 recommendations, 12 reimbursement systems, 20, 172 social health maintenance organizations, 114 Department of Health and Human Services, 20, 158, 169. See also specific agencies Department of Veterans Affairs, 257 Depression, 74-75, 78, 130, 132, 151, 237, 243, 333 Diabetes, 158, 243 Diagnosis, terminal and advance care planning, 69-70 communication of, 59-60 criteria for, 243, 246 defined, 30 education, 221 research, 248 Dialysis discontinuation, 68, 134, 332-333 Disability, 43-44, 52

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-->   Do-not-resuscitate (DNR) orders, 71, 92, 93, 199, 203, 364 Drug Enforcement Administration (DEA), 195 Drugs. See Prescription drugs Durable power of attorney, 67, 68, 69-70, 72 n.3, 90, 199, 200-201 Dying defined, 27 imminently, 28 process of, 33-34, 42-44, 46-47 quality of, 25 terminal illness, 28 trajectories of, 28-30, 52-59, 83, 85, 125, 169 Dysphagia, 76, 129 Dyspnea, 76, 129, 190, 241-243 E ECHO, 347-349 Edmonton General Hospital, 334-335 Edmonton Symptom Assessment System, 143 Education and training. See Community, education; Patients, education; Professional education and training; Public education Elderly people advance directives, 70 age trends, 3, 257, 260-261 case histories, 53-55, 56-58, 182 ethical issues and, 253 health care costs, 155, 157, 159, 260, 327-328 managed care arrangements, 114, 178 mixed-management care, 86 nursing home care, 173, 260 research, 248, 327-328 site of death, 39, 40, 53-55, 56-58, 90-92, 93-95, 260 trajectories of dying, 52, 53-55, 56-58 Emergency medical services, 19 Emotional well-being assessment, 74, 392-394 care for families, 78 growth, 50 hospice care and, 91 issues, 74, 256 practical dimensions of, 80 research, 243-244 End of life, defined, 26-27 End-of-life care. See also Advance care planning; Palliative care curative/life-prolonging therapies, 84 cure-to-care transition, 83, 85 deficiencies in, 5-6, 263-266; see also Quality of care dimensions of, 5, 73-80, 199, 244, 247, 256, 260, 394-397 emphasis shifting in, 80-83 goal-setting and planning, 64-72, 82-83, 86, 260, 352-353 implementation of reforms, 23 intrusive and unwanted treatment, 54, 91, 140, 188, 198-203, 264 legal issues and, 5-6, 188-206, 230 mixed management models, 83-86 models of, 80-86 patient characteristics and values and, 58-59 physical aspects, 73-74 practical aspects, 79-80, 81 principles for, 4-5, 22-23, 64 psychological aspects, 74-75, 77-78 settings for, 95-106; see also Home health care; Hospital care; Nursing home care spiritual aspects, 78-79 strategies, 18-20, 333-334 End-stage renal disease, 179, 332 Environments of care, 51, 81 Epidemiological profile of death and dying age profiles, 34-37 causes of death, 37-38 research needs, 248 site of death, 33, 39-41 symptoms of impending death, 42-44 Episcopal Diocese of Washington, 335-336 Ethics and ethical issues. See also Assisted suicide; Rationing of care case histories, 55-56, 58 committees, 55-56, 78, 102, 112, 333 culture and, 369-372 education on, 11, 218-223 financial practices, 212, 264-265 informed consent, 16, 150, 198-203, 251-252, 253 initiatives, 335, 355-356 in life-prolonging care, 55-56, 78, 332-333

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-->   in managed care, 18, 114-116, 178-179, 262 in organ transplantation, 28 in research, 211, 236, 237, 239, 240-241, 244, 250, 251-253, 371-372 standards of accountability, 124 surrogate decisonmaking, 150 Euthanasia, 189, 335 Experience of care, assessment, 145 F Families. See also Home health care; Patient/family preferences; Surrogates assessments of, 74, 141, 142 attitudes toward death, 46, 271 burden on, 141 as caregivers, 2, 73, 105, 108, 173, 231, 339 communication with, 61-64, 107-108, 109, 138, 151, 199, 374-379 completion of relationships, 34, 56-57 defined, 22 economic burden on, 158-159 education of, 265, 339 emotional needs of, 4, 140-142, 164, 250, 256, 374-379 grief, 78 guilt, 59, 78 interventions for, 339 and life-prolonging care, 75, 78 nontraditional, 94, 231, 250 outcome measures of care, 141-142 practical assistance for, 81 preparation for death, 57-58 research, 245, 250 sensitivity to, 4, 22, 140-141, 245, 374-379 support initiatives, 20 Fatigue, 237, 243 Fear of dying abandonment-related, 15, 264 "death anxiety," 44 focus of, 44, 48 life-prolonging measures and, 1, 5, 14-15, 134 media contribution to, 7, 14-15 opinion polls, 44-45 organ transplantation and, 27 symptom-related, 51-52 Finances, practical assistance with, 81 Financial and economic issues. See also Health care financing burden on patients and families, 155, 158-159, 161, 205 cost-reduction strategies, 173-184 expenditures for care, 156-160 ethical issues, 117, 133, 154-155, 160-173, 178, 212, 264-265 hospital constraints and pressures, 98, 164, 245 in quality of care, 160-173, 178, 245 in research, 238, 257 Florida, 196 Food and Drug Administration (FDA), 257 Fraud and abuse, 169 n.11, 172 Fred Friendly Seminar, 336 Functional status assessment, 75, 140, 144, 394-396 Futility of treatment guidelines, 154, 179-180 and utilization, 127 G Gallup Polls, 44-45 Gender and attitudes about dying, 45 and cause of death, 37 and expenditures for health care, 158 and life expectancy, 36-37 physician-assisted suicide and, 45 and site of death, 39, 40, 41 Geographic patterns, in site of death, 39 Georgetown University St. Francis Center, 337 George Washington University Center to Improve Care of the Dying, 19-20, 337-338 Gerontological Society of America, 322 Glasgow Coma Score, 358 Grants, 18, 208, 343-345 Great Britain, 31, 224, 232 Greenwall Foundation, 18 Grief, 94, 202, 250 H Harris Polls, 45 Harvard University Medical School, 45, 208, 222, 408-412

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-->   Hawaii, 113 Health care cost reduction. See also Managed care advance directives and, 154, 175-177 consumer choice strategies, 177 futility guidelines, 154, 179-180 hospice care and, 154, 174-175 Medicare managed care, 177-179 overtreatment of patients and, 135 physician-patient relationship and, 174, 249 pressures for, 17 rationing, 154, 180-184 research, 248-250, 257-258 strategies, 3, 162-163, 177-179, 249-250, 327-328 Health care expenditures, 3, 154, 156-159, 174 Health care financing. See also Medicaid; Medicare; Social Security biased risk selection, 161 capitated care, 165, 170, 178, 179, 185, 250 discounted fee arrangements, 6 fee-for-service, 114, 115, 160, 162, 163, 165-167, 184, 185, 353 initiatives, 340, 341 palliative care, 104, 155, 341 public, 17 and quality of care, 160-173, 353 recommendations, 8, 10, 267, 268 sources of payment for care, 155-156, 184 visit codes, 166 Health Care Financing Administration (HCFA), 12, 20, 102, 137, 163 -164, 167, 171, 172, 185, 269, 270 Health care organizations, recommended role of, 7 Health Care Partners Medical Group, 326 Health care policy. See Public policy on health care Health care professionals education on terminal care. See Professional education and training interpersonal skills and attitudes, 11, 22 responsibilities, 8, 267 Health care regulation, 117, 189, 191, 194-196, 203 Health care system. See also Community health care systems challenges of chronic illness, 14, 34 changes needed in, 1, 4, 8-9 defined, 88-90 fragmentation of services, 89, 91-92, 122,174 interventionist culture, 47, 50, 71, 91-92, 113, 118 process-of-care elements, 87-88 recommended reforms, 8-9, 267-268 research on services, 248-250 responses to medical overreaching, 50-51 Health insurance benefits (private). See also Medicaid; Medicare; Uninsured people consumer choice strategies, 177 cost containment strategies, 162-163, 177 expenditures, 155, 156-157, 159-160, 245, 248-250 financial incentives and, 154-155, 163, 178, 245, 250, 264-265 financing, 155, 248-250, 267, 340 improvements in, 165, 249-250, 267 limitations and restrictions, 162-163 prognosis and, 30 and quality of care, 160-163 research, 248-250, 340 Health Insurance Experiment, 160 Health maintenance organizations (HMOs). See also Managed care hospices, 114 Medicare enrollees, 113, 171, 178, 185 number of, 88 palliative care models, 114 quality of care, 94-95 reimbursement of physicians, 165 social, 114 Health service organizations organization, 6 research, 2 Health services research, 248, 250 Heart disease and heart failure, 14, 150, 168 n.10, 242, 256. See also specific diseases and conditions Henry Ford Health System, 89 Heroin, 196 Hippocratic Oath, 124 Hispanics, 37, 70 HIV-infected individuals, 128. See also AIDS patients Holistic approach, 228

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-->   Home care caregivers, 10, 106 case studies, 90-91, 94 consulting and crisis teams, 10 cost-effectiveness, 99, 106 day care, 106 demonstration projects, 19 guide, 73-74 without hospice, 91-92, 105-106 with hospice component, 10, 31, 73-74, 91, 102-105, 108-111 informal, 90, 105 medical presence in, 52 palliative care, 338 patient characteristics, 105 preferences for, 45-46 research, 249 residential board and care, 106 trends, 33, 96 Home health services aides, 56-57, 110, 171 arranging for, 79-80 certified, 105-106 fraud and abuse in, 169 n.11, 172 hospice care, 110 number of agencies, 88, 105-106, 171-172 quality of, 106, 168, 171-172 reimbursement for, 171-172 utilization, 99 Homeless people, 58, 155, 231 Hospice care. See also Palliative care appropriateness of referrals, 41 n.3, 83 attitudes about, 45, 46 case histories, 53-54, 57-58, 90-91 certification in, 223 community facility, 108-109 in correctional facilities, 342 and cost containment, 154, 169, 174-175 culturally sensitive, 354 for deaf patients, 357 deaths during, 39 decisionmaking on, 354-355 defined, 30-31 demonstration projects, 19 education and training, 221-222, 223, 266, 328-329, 337-338, 341, 342, 354-355 expenditures for, 174 guidelines, 175, 341 home, 10, 31, 73-74, 91, 102-105, 108-111, 345-346 hospital-based, 40, 108, 111-113, 170, 174 issues and questions about, 103 legal challenges, 204 length of stay in, 40-41 managed care and, 18, 113, 114, 115-116 Medicaid coverage, 156 Medicare eligibility, 6, 16, 30, 39, 40, 60, 89 n.3, 90-91, 95, 104 , 109, 163, 168-171, 184-187 number of agencies, 88 number of facilities, 102 number of patients served, 40, 96 at nursing homes, 168 origin of, 15 ownership, 102 pain management, 57-58, 91, 104, 131 palliative care, 2, 91, 102-103, 108-111, 354-355 patient characteristics, 103-104, 168 n.10 pediatric services, 102, 103 prognosis and, 60, 104 quality of, 95, 102-105, 139, 164-165, 168-171 referrals to, 54, 60, 127, 249 reimbursement for, 156, 163, 168-171, 184, 186-187, 400-404 research on, 104-105, 249, 255, 345-346, 355 spiritual dimension, 79 system, 89 n.3 teams, 79, 91, 103, 108-111 underutilization, 127 volunteerism, 109-111, 170 Hospice institutions and organizations, 89, 102, 109, 116, 204, 324 Hospice Nurses Association, 324 Hospice of the Blue Grass, 324 Hospital care clinical practice guidelines, 98, 180, 222 demonstration projects, 19, 352-353 early discharges, 96 interventionist culture, 47, 50, 71, 91-92, 96 issues and questions about, 97-98 palliative, 93, 111-113, 163, 165, 352-353

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-->   premature discharge, 164, 184 quality of, 96-99, 163-165, 184, 249, 263-264 reimbursement policies, 155 n.1, 163-165, 170, 184 research, 249, 345-346 trends, 261-262 Hospital Home Health Care Agency of California, 325 Hospitals accountability, 99 cost containment, 98, 164, 181, 184, 245 deaths in, 39, 40, 96 ethics committees, 55-56, 78, 92, 112, 113 hospice units, 40, 108, 111-112, 170, 174 intensive care, 40 number of, 88 overutilization, 127 symptoms of dying patients, 129 I Illness. See Acute illness; Chronic illness Infant mortality, 36, 37, 38 Infants, 63-64, 248, 256 Influenza, 35 n.2, 137 Informal care systems, 90, 105 Informed consent, 16, 150, 198-203, 251-252, 253, 377 Informed decisionmaking, 55, 68 Institute for Healthcare Improvement, 20, 338-339 Insurance. See Health insurance benefits; Medicaid; Medicare; Uninsured people Intensive care units (ICUs), 40, 68, 92-93, 97, 134, 222, 360-362 International Congress on Palliative Care, 329 International Institute for the Study of Death, 324 International Narcotics Control Board, 196 Internet, 232, 357 Interventionist mentality, 47, 50, 71, 91-92 Islamic rituals, 79 Islamic Medical Association, 324 J Jewish faith, 79 Johns Hopkins University, 339 Joint Commission on Accreditation of Health Care Organizations, 19 , 106, 111-112, 137 K Kaiser Foundation Health Plan, Inc., 114, 324 Kaiser Permanente of Southern California, 325 Kidney cancer, 90-91 L LaCrosse, Wisconsin program, 72 n.3 Las Vegas, 225 n.5 Last Acts, 347 Legal issues. See also Assisted suicide; Durable power of attorney; Informed consent; Surrogates in advance care planning, 72, 198-203 definition of death, 27 n.2 do-not-resuscitate orders, 199 health insurance coverage, 156 n.2 living wills, 200 in pain management, 5-6, 8-9, 190-198 Legislation. See individual statutes Life expectancy, 2, 35-36, 44, 159 Life-prolonging care/technologies. See also Intensive care units advance care planning, 68, 83 attitudes about, 5, 46, 47, 54-55 case studies, 54-55, 59, 91-94 cessation of, 92-93, 332-333, 349 for children and adolescents, 349 culture and, 371, 374-379 effectiveness of, 84 and fear of death, 1, 14, 27, 134 futility guidelines and, 180 and legal definition of death, 27 overutilization, 134 and preparing for death, 34 psychological dimension of, 75, 78 and quality of care, 123, 140 rationing, 181

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-->   symptomatic relief with, 84 unwanted treatment, 54, 91, 140, 188, 198-203, 264 Litigation assisted suicide, 16 n.1 Cruzan v. Director, Missouri Health Department,188, 202 family/patient wishes and, 189 impact on end-of-life care, 189 State of Washington v. Glucksberg,204 Living wills, 68, 93, 198, 199, 200 Long-term care, 105 n.4, 156, 168 Lung cancer, 43, 84, 91-92, 129, 158 Lymphedema, 77 M Malpractice litigation, 189 Managed care and access to palliative care, 3 advance directives, 176 coordinating role, 113-116 cost containment measures, 163, 176, 177-179 defined, 113 dimensions of, 17-18 ethical issues, 18, 114-116, 178-179, 262 hospices, 113, 114, 115-116 idealistic view, 18 Medicare enrollees, 113, 177-179 objectives, 18 organization, 17-18 process, 17 quality of care, 3, 18, 114-115, 178, 353 structure of, 89 n.3 Marin Home Care, 325 Marquette University, 339-340 Mass media and attitudes about dying, 6-7, 12-13, 14-15, 251 images of death, 16, 33-34, 266 and prescription drug regulation, 190 public education initiatives, 20 McGill University Palliative Care Program, 346-347 Mediation, 333 Medicaid, 17, 57, 113, 155, 156, 158, 167-168, 172, 173, 179, 184, 202 Medical boards, 8, 191-195, 264, 267, 268 Medical culture, 47, 50, 71, 91-92, 113, 118, 198, 207 Medical Outcomes Trust, 146 Medical review panels, 333-334 Medicare certified care facilities, 102, 111-112, 137 cost containment, 17, 169, 170, 173-184 coverage, 155, 156, 161, 162, 163, 164, 185-187, 260 demonstration and evaluation initiatives, 20 education initiative, 340 enrollments, 113, 160, 171 expenditures, 154, 155, 157-160, 184-185 home care coverage, 105, 171-172, 340 hospice coverage, 6, 16, 20, 30, 39, 40, 89 n.3, 90-91, 95, 104, 109, 163, 168-171, 184-187, 265, 340, 400-404 hospital care, 163-165, 170 managed-care enrollees, 113, 177-179, 185, 262 nursing home care, 155, 168-171 palliative care, 165, 179, 184 physician services, 165-167, 186-187, 225 n.6 policies, 3, 20, 137 prescription drug coverage, 156, 163, 173 reimbursement practices, 98, 163-167, 185-187 research, 250 Medicare Rights Center, 340 Medication. See Prescription drugs Memorial Sloan-Kettering Cancer Center, 324 Metastatic non-small-cell carcinoma, 84 Milbank Memorial Fund, 18, 150 Minnesota, 115 Minnesota Hospice Association, 168 Missoula Demonstration Project, Inc., 19, 340 Mobility of patients, 42 Models of care management, 80, 82-86 clinical prognostic, 60-61 for symptom research, 238-240 Morbidity/mortality conferences, 221 Morning reports, 221

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-->   Morphine, 57, 93, 100, 242, 255. See also Opioids Mortality rates, 35, 138, 164, 221 Mount Sinai Medical Center, 341 Mouth problems, 77, 91, 128 Multiple organ system failure, 43, 76, 86, 94-95, 129 Multiple sclerosis, 128 Myeloma, multiple, 84 N Nasopharyngeal cancer, 376 Nathan Cummings Foundation, 388 National Association of Black Social Workers, 323 National Association of Social Workers, 88 n.1 National Cancer Institute, 131-132, 208, 256, 257 National Center for Health Statistics, 12, 102, 105, 269 National Heart, Lung, and Blood Institute, 258 National Home Care and Hospice Survey, 104 National Hospice Organization, 40, 102, 104, 137, 168 n.10, 323, 341 National Hospice Study, 168 National Institute of Health, 12, 149, 328, 255-256, 257, 269 National Medical Expenditure Survey, 157 National Opinion Research Center (NORC), 45 National Prison Hospice Association, 342 Nausea and vomiting, 76, 128, 130, 132, 237 Neurodegenerative disorders, 30 Neurologic Institute at Columbia-Presbyterian Medical Center, 342 Neuromuscular diseases, 76, 242 Neuropsychiatric problems, 12, 243, 270 Nevada, 201 New Jersey, 195, 372 New York, 201, 203 New York City, 19, 89, 352-353 New Zealand, 224 Nurse practitioner, 262 Nurses and nursing care definition, 228 dimensions of, 73, 79 education, 210, 227-229 hospice, 91, 109, 110, 170 number of nurses, 88 in nursing homes, 100, 168 pediatric, 209 as teachers, 216 Nursing home care. See also Nursing homes appropriateness of, 93-94 case histories, 56-57, 93-94 costs, 158 education initiative, 339-340 guidelines, 151 hospice services, 168 issues and questions about, 101-102, 249 pain management, 128, 131 palliative care in, 93-94, 100, 111-112, 131 physicians' visits, 100, 166 quality of, 99-102, 131, 167-168 reforms, 99 reimbursement for, 99, 155 n.1, 167-168, 184 research, 250, 252, 255, 340, 345-346 trends, 99 Nursing Home Reform Act (1987), 99 Nursing homes advance care planning, 100, 107-108 deaths in, 39, 40, 99-100 fraud and abuse, 169 n.11 length of stay in, 100 Medicare- and Medicaid-certified, 99 number of facilities and beds, 88, 99 ownership, 99 patient characteristics, 99-100, 128 quality monitoring and improvement, 99 regulation of, 99, 168 staffing, 100, 168 utilization, 96 Nutrition, 134, 200, 227 O Oklahoma, 39 Open Society Institute, Project on Death in America, 18, 343-345 Operation Restore Trust, 169 n.11 Opioids, 6, 9, 131, 132, 191-197, 237, 238, 239, 242, 253, 264, 268 , 355-356. See also Morphine

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-->   Oregon assisted suicide, 19, 204, 206 coalition on caregiving, 19 hospice care, 176 Medicare enrollees in HMOs, 113 rationing of care, 182-184 resource list, 107-108 site-of-death trends, 39 Task Force to Improve Care of Terminally Ill Oregonians, 351-352 Oregon Health Sciences University Center for Ethics in Health Care , 19, 345-346, 351-352 Organ donations, 27 n.2, 332 Organ transplants, 27, 55-56 Osteoarthritis, 52 Outcome measures American Geriatric Society, 139, 140-141 in amyotrophic lateral sclerosis, 342 dimensions of, 147, 152 initiatives, 19-20, 51, 342 mortality rates, 138 patient and family perceptions, 6, 202 physiological indicators, 138-139, 142, 147 processes of care, 137-138, 152 proxy, 137 psychosocial, 142, 147 quality of life, 142 reimbursement-related, 138 research needs, 2, 6, 8, 267 shifting, during dying trajectory, 125 structure of health care and, 136-137, 152 Ovarian cancer, 376-378 Overtreatment and overutilization, 125, 126-127, 134-135, 150, 165 -166, 189 P Pain and suffering. See also Pain management acute, 126, 127 assessment of, 132-133, 143 chronic, 84, 195, 239 defined, 26 dimensions of, 76 fear of, 44, 148, 205, 236-237 hypersensitization, 84 prevalence, 128 psychological effects, 76, 94 research, 12, 15, 132, 237-240, 251 unnecessary, 5 Pain management and addiction to medication, 192-194 barriers to, 133, 355-356 cancer patients, 84, 126, 127, 131, 132, 133, 150 case histories, 57-58, 93 education and training initiatives, 20 guidelines, 76, 126, 127, 132, 150 hospice care, 57-58, 91, 104, 131, 255 innovations, 238-240 for life-support termination, 93 nursing care, 73, 91, 112 in nursing homes, 100 prescription drug regulations and, 5-6, 190-198 recommendations, 8, 267 and reimbursement policies, 170, 173 resource program, 355-356 undertreatment, 2, 5-6, 57-58, 127, 131-132, 143 Palliative care. See also Pain management access to, 3, 6, 9 in amyotrophic lateral sclerosis, 342 assessments for, 15-16, 74-75 barriers to, 6, 132 case narratives in, 346-347 certification, 223, 329 and completion of relationships, 34, 56-57 coordination of care through, 108-113 criticism, 183-184, 226-227 defined, 31-32, 86 dimensions of, 2-3, 5, 15-16, 31-32 education and training, 113, 209, 212, 216, 218-223, 224-227, 328-331, 338, 346-347, 352-353 evaluation initiatives, 19, 20 financing of, 104, 155, 341 guidelines, 132 home hospice teams, 108-111 hospital, 93, 111-113, 163, 165, 352-353 interdisciplinary, 108-113, 185, 210, 218-219, 225-226, 260, 263, 269 life-prolonging therapies as, 84 managed care and, 3 prevention component, 84 professional societies, 226-227

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-->   public policy and, 2-3 quality of, 138 recommendations, 9, 11, 12, 269 regulation, 192, 255 reimbursement for, 341 research, 131, 165, 237, 240, 250, 251, 253 specialized inpatient beds, 10 as a specialty, 31-32, 138, 209, 214, 224-227, 269 spiritual dimension, 79 teams, 93, 108-113 Pancreatic cancer, 84, 374-375 Park Ridge Center, 346 Pastoral counseling, 227 Pathophysiology, 73, 236, 242, 253, 255-256 Patient assessment. See also Diagnosis, terminal; Prognosis attitudes, 396 cancer patients, 334-335 changes in status, 148 disease- or condition-specific measures, 148-149 emotional, 382-394 functional status, 147, 394-396 information from patients vs. surrogates, 144-145 instruments, 10, 51, 140-142, 147-148, 334-335 issues and problems, 142-149, 246-247 for outcomes of care, 140-141 for pain, 132-133 for palliative care, 15-16, 74-75 physiological, 246-247, 391-394 quality of life, 397-398 religiousness, 396-397 satisfaction with care, 140, 146-147, 398-399 spirituality, 397 symptom interpretation, 73, 143, 148 timing of, 143-144 Patient-clinician relationship and advance directives, 70-71 children, 64, 65, 202 and communication, 12-13, 59-66, 202, 354, 377-378 and cost containment, 174 diagnosis communication, 59-60 fragmentation of, 122 guidelines, 65, 66 in hospitals, 96 importance, 12-13 initiatives to improve, 61-64, 354 and malpractice litigation, 189 managed care and, 3, 63 prediagnostic, 66 prognosis communication, 60-61, 86, 377-378 and quality of care, 127 sensitivity to patient/family values, 64 Patient/family preferences. See also Advance care planning assessment of, 74, 144-145 communication of, 63-64, 66, 68, 69-70 community initiatives on, 19, 108 legislation, 202-203 race/ethnicity and, 46 respect for, 10, 22, 91, 96, 134, 251, 264 stability of, 66, 68 surveys of, 45-46, 371 Patient Self-Determination Act, 72, 199, 202-203, 369, 370 Patients characteristics and values, 58-59 communicating with, see Communication with patients and families; Patient-clinician relationship education, 51, 68, 72 n.3, 81, 144-145, 266 financial burdens, 141, 142, 161, 205 involvement in care, 4 records, 10, 71-72 referral/transfer, 10, 18, 20, 41 n.3 rights, 16, 51, 91-92, 94, 124, 140-141, 150, 188, 189, 198-204, 205, 266, 347-349, 374-379 simulated, for education, 221 as teachers, 219-220, 221 Pediatric hospice care, 102 nurse specialists, 209 patients, 30, 103 prognoses, 61 Pediatric intensive care unit (PICU), 180, 358 Pediatricians, 202 Pennsylvania State University College of Medicine, 346-347 Performance monitoring and improvement, 10 Personal care, 81 Physical therapy, 171, 227 Physician-assisted suicide. See Assisted suicide

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-->   Physicians. See also Clinicians; Patient-clinician relationship accountability, 122 advance care planning, 330-331 attending, 110, 221 attitudes on appropriateness of treatment, 134, 189, 215, 354 death and dying education, 216-217, 329 disciplinary action against, 191, 196-197 education and training, 195, 207, 210-227, 232, 328-332, 354, 355 graduate programs, 215-216 hospice care, 103, 110, 111, 170-171, 186-187, 328-329 interventions targeting, 347, 355 number of, 88 nursing home care, 100, 166 palliative care training, 327-328, 330-331 quality of care, 165-167 reimbursement of, 165-167, 184, 186-187 rights of, 204 undergraduate programs, 212-215 Physician Payment Review Commission (PPRC), 166, 167 Picker Institute, 20 Pneumonia, 100 Populations for Epidemiological Studies of the Elderly, 43 Power of attorney. See Durable power of attorney Preferences. See Patient/family preferences Preparation for death, 34, 57-58 Prescription drugs addiction to, 6, 190, 192-194, 195, 264 diversion of, 190-192 medical board policies, 194-195 profitability issues, 255 quality of care issues, 173 recommended reforms, 8-9, 267, 268 regulation of, 8-9, 190-198 reimbursement for, 155 n.1, 162, 170, 173, 255 tolerance (physiological), 193-194 underutilization, 131-132 Preventive care, 80, 84 PRISM system, 358 Processes of care. See also Communication with patients and families; Patient-clinician relationship elements of health care systems, 87-88 interventions, 138 managed care, 17 and quality of care, 137-138 Professional education and training academic detailing, 151, 251 accountability for, 9, 207 in advance care planning, 330-331 attending rounds as, 221 attitudes and, 209, 231, 268-269 barriers to, 6 "breakthrough," series, 20, 338-339 clinical case studies, 207, 220, 229, 346, 373-374 and clinical practice guidelines, 151 on communication with patients, 61 continuing medical education, 209, 212, 218, 229-230, 231-232, 251 , 266, 267, 268-269, 270-271, 330-331, 338-339, 346-347, 357 core components, 209-210 curricula, 207, 210-211, 212, 213, 214, 216-224, 228-229, 233, 251 , 254, 407-410 death and dying, 92, 207, 214, 216-217, 220, 221, 227, 230, 336 decision support systems, 222 deficiencies in, 6, 15, 207-208, 209-210, 228, 230-231, 233-234, 265 ethical/professional principles, 11, 209-211, 215, 218, 228, 230, 233, 266, 268-269, 351-353, 356-357 graduate programs, 207, 215-216, 223, 230, 231, 265, 268-269 hospice care, 221-222, 223, 328-329, 337-338 improvement strategies and initiatives, 20, 217-223, 343-345 incentives for change, 223-224 intensive care, 222 interpersonal skills and attitudes, 11, 20, 209, 211, 213, 218, 233 mentors and mentorship development, 208, 209, 216, 219-220 morbidity/mortality conferences, 221 morning reports, 221 multidisciplinary, 230, 231, 232, 233 nursing, 227-229 organizational skills, 11, 211 palliative care, 113, 220, 223, 224-227, 328-330, 338, 407-408

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-->   patients as teachers, 219-220 personal development of professionals, 208, 209, 211, 213, 215-216, 233 physicians, 210-227, 328-332 practice guidelines, 222 recommendations, 7, 9, 10, 11, 268-269 reforms, 203, 207-208, 210, 217-224, 268-269 residency review committees, 223-224 responsibilities, 4-5, 7, 9, 22-23, 207-209, 210-211 research, 251, 254 role models, 219, 220, 224-225, 269 role playing, 220, 221, 251, 331 scientific/clinical, 11 simulated patiၥnts, 221 social workers, 230-231 standards of, 4-5, 117, 212-213, 215-216 symptom assessment tools, 222 teaching materials, 222-223 undergraduate programs, 207, 212-215, 216, 230, 231, 265, 268-269 Prognosis approaches, 30 clinical information availability on, 71 clinical predictive models for, 60-61, 246, 358-362 communication of, 60-61, 62-63, 86, 377-378 defined, 30 examples, 63 guidelines to, 104, 246, 341, 400-404 and health benefits, 30, 41 n.3, 60, 180, 400-404 and hospice care, 41 n.3, 60, 104 life expectancy, 60, 86, 104, 246 mental illness and, 402-404 qualitative assessments, 60 uncertainty in, 30, 60, 86 Project on Death in America, 18, 204 n.10, 222, 343-345 Prostate cancer, 94, 177 Psychological well-being. See also Emotional well-being approaches to care, 51, 74-75, 78, 83, 84 cancer patients, 128 clinical services, 230 and spiritual growth, 80 Psychosocial well-being, 237 Public education, 10, 20, 45 Public figures, dying with dignity, 16 Public policy on health care. See also Health care financing; Legal issues; Quality of care research epidemiology of death and dying and, 34 palliative care, 2-3 perspectives, 17 whole-community model, 10 Q Quality of care. See also Clinical practice guidelines aggressive care near death and, 123, 140 assessment, 125-126, 140-141, 337, 355, 390, 405-406; see also Patient assessment case histories, 90-95, 182-184, 374-380 cost reduction proposals and, 154, 162, 163-164, 173-184 defined, 25, 123-124, 135, 245 dimensions of, 135-139 environmental elements, 135-136, 140 evidence of problems, 126-135 financing mechanisms and, 117, 151, 154-155, 160-173, 185, 254, 267 home care services, 106, 171-172 hospice services, 95, 102-105, 139, 168-171 in hospitals, 96-99, 163-165 impediments to, 2 initiatives, 18-20 interpersonal performance deficiencies, 126 legislation and, 188, 189, 192, 193-194, 195, 200-201, 203-206, 333 -334 managed care, 3, 18, 114-115 measurement and instruments, 104-105, 123, 139-149, 152, 189, 245-246, 256, 267, 334-335, 358-362, 388-399, 405-406; see also Patient assessment medication-related, 173 nursing homes, 99-102, 167-168 outcome measures, 135-139, 140-141 overtreatment and, 126-127, 134-135 physician services, 165-167 processes of care and, 135, 137-138, 140-141, 149, 245-246, 264, 347-349, 352-353 recommendations, 8, 267-268 reform strategies, 1, 8, 10, 99, 123, 125-126, 135, 140-141, 146, 165, 192, 197-198, 245, 248-250, 259-271, 327-357

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-->   research needs, 123, 145, 152, 235-258, 264, 327, 328, 334, 345-347, 349, 354-355, 372-373 satisfaction with, 146-147, 398-399 structural aspects, 135, 136-137, 140-141, 352-353 technical performance deficiencies, 126, 127, 149-150 unrelieved symptoms and, 126-127, 128-134 Quality of dying defined, 25 measure, 104-105 quality of care and, 124-125 Quality of life defined, 25 dying and, 230, 237, 240, 340 health care and, 124, 148, 159, 252-253, 267 measurement of, 44, 144, 397-399 perspective in health care, 118-119 quality of care and, 124-125, 141, 142 research, 256 R Race/ethnicity. See also Cultural sensitivity in care and advance directives, 70 and attitudes about dying, 46 and cause of death, 37, 38 infant mortality, 38 and life expectancy, 36 in U.S. health system, 250-251, 366-369 Rationing of care age-based, 154, 181-182, 262 community consensus, 182-184 and cost containment, 180-184 defined, 180-181 in managed care plans, 115 Recommendations accountability, 8, 9, 267-268 advance care planning, 7, 9, 266 communication about dying, 12-13, 270-271 financing mechanisms, 8, 267, 268 health care system reforms, 8-9, 267-268 health professionals' roles, 8, 267 information system, 8, 267-268 outcomes research, 8, 267 palliative care, 9, 11, 269 prescription drug reforms, 8-9, 267, 268 professional education, 9, 11, 268-269 public education, 266 quality improvement strategies, 8, 267-268 research priorities, 9, 12, 269-270 whole-community approach, 9-10, 267-268 Regulation of health care nursing homes, 99, 168 prescription medicines, 5-6, 8-9, 190-198 professional accountability, 124 Rehabilitative care, 80, 82, 85 Religion, 78, 79, 94, 101, 247, 396-397. See also Spiritual well-being Renal failure, 158, 179 Research. See also Demonstration projects on attitudes, 44, 45 biomedical, 6, 236-244, 255-256, 265 cachexia-anorexia-asthenia syndrome, 240-241 caregiver experience and bereavement, 250 clinical, 6, 12, 235, 247, 252-253, 256, 265 cognitive and emotional symptoms, 243-244 cost containment, 175 cultural diversity, 372-373 developmental issues, 239-240, 243, 244-247, 254, 258, 265, 269, 270 dying experiences, 334 dyspnea, 241-243 epidemiological, 6, 235, 245, 248, 265, 334 ethical issues in, 151, 211, 236, 237, 239, 240-241, 244, 250, 251 -253, 254 funding, 238, 254-255, 257, 345 health services, 6, 248-250 hospice care, 104-105, 175 impediments to, 6, 253-254, 257 initiatives, 19, 337 leadership, 253-258 limitations of, 40, 235-236, 243, 245-247, 252, 253-258 methodological issues, 44, 236, 245-247, 254, 265, 334, 359

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-->   models, 237-240, 270 multidisciplinary, 143, 237, 247, 257-258 neuropsychiatric problems, 12 outcomes, 2, 6 pain, 12, 15, 132, 237-240 palliative care team, 113 patient-clinician communication, 61 priorities/needs, 2, 5, 6, 12, 23, 123, 236, 241, 244, 247-251, 255 , 257-258, 269-270 quality of care, 123, 145, 152, 235-258, 264, 327, 328, 334, 345-347, 349, 354-355, 372-373 responsibility for, 12 social and behavioral, 244-251, 372-373 sociocultural, 250-251 symptom-based, 236-244, 255-256 Residency Review Committee for Internal Medicine, 329 Respite programs, 10, 91, 175 Rhode Island, 201 Robert Wood Johnson Foundation, 18, 336, 347, 388 S Sacramento, California, 180 Sacramento Health Care Decisions, 347-349 Scientific/medical advances, and dying, 14 Shortness of breath, 84, 128, 132, 237, 241 Sickness Impact Profile, 141 Site of death age and, 39, 40, 41, 260 cancer and, 39, 260 data on, 248 gender and, 40, 41 geographic patterns in, 39-40 home, 33, 39, 91, 102, 260 hospices, 39, 40-41 hospitals, 39, 40, 96, 260 nursing homes, 39, 40, 260 Skin problems, 77, 130 Sleep disorders, 128, 130, 143 Social health maintenance organization, 114, 262 Social Security3, 17, 261 Social workers advance care planning, 65 education of, 210, 230-231 hospice care, 109, 110 number of, 88 Sociocultural issues. See also Cultural sensitivity in care; Race/ethnicity in advance care planning, 70 n.2, 72 in attitudes toward dying, 46, 47, 192 in communication, 51, 70 mobility of Americans, 33-34 in organ donation, 332 in patient assessment, 247 research, 244, 247, 250, 332 Spiritual well-being advance care planning and, 199 assessment, 74, 145, 149, 397 communication on, 65 dialysis discontinuation and, 332-333 education program, 346 growth of patients and families, 34, 50, 91 hospice care and, 110 nursing home care and, 101-102 psychological care and, 74-75 quality of care and, 78-79, 230, 346, 349-350, 397 St. Jude Children's Research Hospital, 349 Step-down arrangements, 10 Stroke, 77, 256 Suffering, defined, 26. See also Pain and suffering Suicide, 52, 94, 243. See also Assisted suicide SUPPORT, 70-71, 138, 175, 202-203, 334, 347 Support systems, 10. See also Bereavement, support groups Supportive care, 32 n.6, 222. See also Palliative care Supportive Care of the Dying: A Coalition for Compassionate Care, 19, 20, 325, 349-350 Surrogates for adult patients, 200-201 advance care planning, 69-70, 198-199, 200-202, 266 for children, 201-202 clinical guidelines and, 150 lack of, 53-54, 58 research issues, 247 Survey of the Last Days of Life (SLDOL), 40,42 Surveys and polls on advance directives, 45

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-->   on assisted suicide, 45 on attitudes toward death, 44-45 on patient preferences for care, 45-46 of site of death, 40 of symptoms of death, 42 Survival time, 141. See also Prognosis Symptoms of dying. See also Pain and suffering age and, 43-44 assessments, 74, 143, 144-145, 148, 246-247 cancer patients, 42, 52, 76, 77, 128, 129-131, 143, 150, 237, 240 defined, 26, 77-78 emotional, 73, 140-141, 394 fear of, 51-52 of impending death, 42-44, 128-129, 246-247 interpretation of, 148 management of, 82, 83, 84, 132, 150, 189, 210, 237; see also Palliative care measures of severity, 130-131, 134, 144, 243, 391-392 physical, 73-74, 76-78 physiological, 76-77, 130, 140, 223, 236, 240-243 psychological, 77-78, 130, 141, 243-244 and quality of care, 128-134, 140 research strategy, 236-244, 246-247, 253, 255-256 undertreatment of, 127 unrelieved, 51-52, 128-134 T Task Force to Improve the Care of Terminally Ill Oregonians, 351 Telemedicine, 263 Terminal illness, 28-30 Texas, 39, 191, 196, 197 Therapy and therapists, 75, 110, 241 Total Quality Management (TQM), 126 U UCLA School of Medicine, 326 Undertreatment of patients, 5, 18, 126, 127-132, 143, 150, 152, 189 Underuse of care, 126, 127 Uninsured people, 17, 98, 161 United Hospital Fund, 19, 352-353 United Nations International Drug Control Program, 196 University of Alberta, 217 California, San Diego, 353 New Mexico, 354 Ottawa, 217 Pittsburgh Medical Center, 354 South Florida College of Medicine, 354-355 Southern California, 46 Washington, 355 Wisconsin Comprehensive Cancer Center, 355-356 U.S. Bureau of Labor Statistics, 88 n.1 U.S. military health care system, 89 U.S. Supreme Court, 188, 203-204, 206 V Values questionnaire, 67 Vermont Ethics Network, 67, 356-357 Veterans, 46, 155 Virginia, 195-196 Visiting Nurse Associates and Hospice of Northern California, 325 VITAS Healthcare Corporation of Florida, 323 Volunteers, 109, 110, 111, 170, 342 Vomiting. See Nausea and vomiting W Washington, 203 Washington Home and Hospice, 100, 324 Washington State Medical Disciplinary Board, 194 Washington State Senate Health and Long Term Care Committee, 326 Wasting, 132, 237, 240, 243 Weakness and fatigue. See Asthenia Whites, 36, 37, 38, 46, 70, 103-104 Whitmore Foundation, 357 World Health Organization, 31 n.4, 132 Y Yale University Medical School, 219-220