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
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
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
Beneficience 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
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
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
Culpepper 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
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
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
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
HealthCare 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
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
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
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
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 Institutes of Health, 12, 149, 238, 255-256, 257, 269
National Medical Care 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
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
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
Physicians. 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
Preventive care, 80, 84
PRISM system, 358
Processes of care. See also Communication with patients and families;
Patient-clinician relationship
Professional education and training
Prognosis
Project on Death in America, 18, 204 n.10, 222, 343-345
Prostate cancer, 94, 177
Psychological well-being. See also Emotional well-being
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
Q
Quality of care. See also Clinical practice guidelines
Quality of dying
Quality of life
R
Race/ethnicity. See also Cultural sensitivity in care
Rationing of care
Recommendations
Regulation of health care
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
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
Skin problems, 77, 130
Sleep disorders, 128, 130, 143
Social health maintenance organization, 114, 262
Social Security 3, 17, 261
Social workers
Sociocultural issues. See also Cultural sensitivity in care; Race/ethnicity
Spiritual well-being
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
Survey of the Last Days of Life (SLDOL), 40, 42
Surveys and polls
Survival time, 141. See also Prognosis
Symptoms of dying. See also Pain and suffering
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
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
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
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
elements of health care systems, 87-88
interventions, 138
managed care, 17
and quality of care, 137-138
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
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 patients, 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
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
approaches to care, 51, 74-75, 78, 83, 84
cancer patients, 128
clinical services, 230
and spiritual growth, 80
epidemiology of death and dying and, 34
palliative care, 2-3
perspectives, 17
whole-community model, 10
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
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
defined, 25
measure, 104-105
quality of care and, 124-125
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
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
age-based, 154, 181-182, 262
community consensus, 182-184
and cost containment, 180-184
defined, 180-181
in managed care plans, 115
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
nursing homes, 99, 168
prescription medicines, 5-6, 8-9, 190-198
professional accountability, 124
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
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
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
advance care planning, 65
education of, 210, 230-231
hospice care, 109, 110
number of, 88
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
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
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
on advance directives, 45
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
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
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