Approaching Death Improving Care at the End of Life (1997) / Chapter Skim
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Pages 419-437
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From page 419... ...
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 ~.ff~.r~iveness of, 72, 200, 201-203
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From page 420... ...
, 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)
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From page 421... ...
, 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 it, Baby boom generation, 3, 37, 43, 182, 260261 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, 2 421 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, 200201, 325, 347-349, 372 Canada, 224 Canadian Palliative Care Curriculum, 222, 407-408 Cancer patients.
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From page 422... ...
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 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, 116118, 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, 9394, 105, 129, 240, 243
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From page 423... ...
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.
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From page 424... ...
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, 9092, 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 INDEX 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.
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From page 425... ...
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.
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From page 426... ...
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.
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From page 427... ...
INDEX 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, 83 346, 355 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, 341 427 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 spiritual dimension, 79 system, 89 n.3 teams, 79, 91, 103, 108-111 underutilization, 127 volunteerism, 109-111, 170 Hospice institutions and organizations, 89, 102, 109, 116, 204, 324 Hospice Nurses Association, 324 Hospice of the Blue Grass, 324 Hospital care clinical practice guidelines, 98, 180, 222 demonstration projects, 19, 352-353 early discharges, 96 interventionist culture, 47, 50, 71, 91 92, 96 issues and questions about, 97-98 palliative, 93, 111-113, 163, 165, 352 353
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From page 428... ...
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 INDEX 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.
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From page 429... ...
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, 268 429 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.
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From page 430... ...
, 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 INDEX 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)
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From page 431... ...
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, 5657 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, 352353 interdisciplinary, 108-113, 185, 210, 218-219, 225-226, 260, 263, 269 life-prolonging therapies as, 84 managed care and, 3 prevention component, 84 professional societies, 226-227
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From page 432... ...
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 INDEX 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 .
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From page 433... ...
See also Communication with patients and families; Patientclinician relationship 433 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, 209211,215,218,228,230,233,266, 268-269, 351-353, 356-357 graduate programs, 207, 215-216, 223 230, 231, 265, 268-269 hospice care, 221-222, 223, 328-329, 337-338 improvement strategies and initiatives, 20, 217-223, 343-345 incentives for change, 223-224 intensive care, 222 interpersonal skills and attitudes, 11, 20, 209,211,213,218,233 mentors and mentorship development, 208, 209, 216, 219-220 morbidity/mortality conferences, 221 morning reports, 221 multidisciplinary, 230, 231, 232, 233 nursing, 227-229 organizational skills, 11, 211 palliative care, 113, 220, 223, 224-227, 328-330, 338, 407-408
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From page 434... ...
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, 168171 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, 388399, 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, 347349, 352-353 recommendations, 8, 267-268 reform strategies, 1, 8, 10, 99, 123, 125
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From page 435... ...
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, 267 435 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.
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From page 436... ...
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.
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From page 437... ...
Bureau of Labor Statistics, 88 n.1 U.S. military health care system, 89 U.S.
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