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Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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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

Suggested Citation:"Index." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening.

Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care.

This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life:

  • Determining diagnosis and prognosis and communicating these to patient and family.
  • Establishing clinical and personal goals.
  • Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
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