Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life (2015) / Chapter Skim
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297, 302, 491-492, 501, 508, 509, ACA and, 279-280, 310, 317-319 513 Advance Payment Model, 317 Acute Physiology and Chronic Health alternatives to, 320 Evaluation (APACHE) , 92 care management practices, 473 Adams, Lisa Bonchek, 365 defined, 317 Administration for Community Living, 279, Medicare policies, 317, 318-319, 472 301 outpatient care, 292 Administration on Aging, 299, 301, 311 palliative and hospice care, 292, 472- Advance care planning 473, 479 ACA and, 12, 120, 132, 366-370 patient characteristics, 318 age and, 126, 136 performance measurement benchmark, autonomy principle and, 124-125, 152, 317, 472 166, 181 Pioneer program, 317, 318, 468, 471, barriers and disincentives, 11, 12, 472, 473 117, 125, 126-129, 141, 154-155, population-based payment model, 318 213 proposed improvements, 318-319 cancer context, 137, 140-141, 169, 170, and quality of care, 84, 317, 318, 468, 172, 214-215 469, 473 for children and youth, 68, 134, 136, reimbursement and payment approaches, 141-144, 146, 173, 184, 187, 188, 279-280, 317-318, 468, 471, 472, 356, 425-426, 429, 432 479 choice of health care agent, 129-132, Shared Savings Program, 315, 317, 318, 172 468, 472, 473 chronic obstructive pulmonary disease and social services, 310 context, 137, 212-213 585
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From page 586... ...
586 INDEX clinician-patient communication, 2, 3, long-term care, 164, 172, 174, 179, 218 6, 11-13, 18, 50, 117, 118, 128-129, managed care and, 298 n.18 142, 146, 149-150, 152, 154, 155, Medicare and, 121, 124, 139, 464, 510 157-172, 190-191, 212, 213, 237, model initiatives, 172-185 345, 448 National Framework and Preferred cognitive impairment/dementia context, Practices for Palliative and Hospice 119, 137, 145-146, 215-216 Care Quality, 172-173, 185, 425-426 consultations and discussions, 118, nurses, 185, 186, 389, 448 128-129, 143, 155, 185-186, 190, nursing home residents, 126, 129, 132, 211-212, 367, 510 151, 152, 171, 176, 177, 181, 182, Consumer's Toolkit for Health Care 188, 216, 286, 448, 468 Advance Planning, 123-124 palliative care consultation, 60, 66, 137, Conversation Project, 124, 125, 352- 143, 155, 160-161, 169, 172-173, 353, 354, 356-357, 360, 420 175, 215 n.13 and costs of health care, 12, 18, 139- and patient/caregiver satisfaction with 141, 369, 510 care, 135-137 current state of, 118, 124-141 POLST paradigm, 17, 121, 123, 172, "death panels" controversy, 12, 120, 173-179, 180, 182, 183, 184, 187, 132, 366-370 188, 189-190, 217-219, 323, 331, decision aids, 170-172 358, 389, 448 decision-making capacity, and methods preferences for care, 11, 12, 13, 18, 125 of patients, 146, 167-172, 189 127, 141-157, 189, 369, 510 definitions, 120, 122, 385 primary care and, 186 demographic characteristics and, professional education and training, 181, 125-127 225, 227, 237 disability context, 145-147, 178 public education and engagement, 18, effects on health care agents and 19, 20, 32, 121-124, 125, 172-173, families, 2, 11, 136, 137-139, 367 345, 346-347, 352-353, 354, 355, elderly people, 136, 144-145 356-357, 358, 359, 360, 370, 371, electronic health records and, 17, 181- 420, 421 185, 188, 331 public support for, 368, 370 family involvement in, 18, 128, 143, and quality of care, 78 n.13, 80, 135 150, 152, 154, 164-166 137, 176-178 financial planning considerations, 145, quality-of-life considerations, 147, 148 212 racial, ethnic, and cultural differences, health care agents, 11, 18, 118, 122, 11, 49, 125, 148-155, 188 124, 126, 129-132, 134, 135, 136, recommendations, 12-13, 17, 19, 20, 137-139, 142, 145, 147, 150, 157, 190-191, 330-331, 370, 371 158, 160, 164-166, 167, 173, 174, reimbursement policies and financial 175, 176, 179, 183, 184, 185, 186, incentives, 17, 117, 121, 188-189, 187, 189, 211, 212, 215, 216, 349, 320, 323, 331, 368, 369-370, 464, 385, 386, 387, 389 468 health literacy and, 156-157 religion and, 147-149, 178-179, 212 heart failure context, 137, 211-212 research needs, 187-189, 432 historical review, 120-124 Respecting Choices initiative, 179-181 homeless or "unbefriended" people, and satisfaction with care, 135-137 146-147 shared decision making, 1, 4, 17, 136, and hospice enrollment, 212 138, 157, 166-172, 173, 174, 182, life cycle model (proposed) , 185-187, 188, 326, 331 189-190 social workers and, 185, 186, 243 literacy level and, 155-157 state policies and, 323
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electronic storage of, 11, 17, 172, 180, and advance care planning, 126, 136 181-185, 331, 448 and cause of death, 31, 34 Five Wishes, 142, 356, 426 and costs of end-of-life care, 494, 495, flexibility in interpreting, 134-135 499 homeless people, 146 demographic trends, 35-38 Honoring Choices, 354, 356, 357, 421 Agency for Healthcare Research and incorporation into medical record, 121, Quality (AHRQ) , 33, 79, 99, 211 180, 181 n.36, 299 n.20, 537, 538 and intensive care, 126, 151, 214, 216 Aging with Dignity and Five Wishes, 352, legislation and legal implications, 354, 356-357, 420 88, 121, 124, 126, 134-135, 366, Aid to Capacity Evaluation, 145 n.22 369-370 Albom, Mitch, 352 living wills, 117, 120, 122, 124, 132, Alliance for Excellence in Hospice and 133, 136 n.13, 147, 175, 181, 184, Palliative Nursing, 243 366 n.14, 369, 385, 387 Alternative Quality Contract (AQC)
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From page 588... ...
, 32-33 American Recovery and Reinvestment Act of 2009, 387 C American Society of Clinical Oncology, 73, California 81 n.14 Advanced Illness Management program, American Society of Health-System 322 Pharmacists, 245-246 cessation-of-treatment conflict, 364 Anderson, Gloria, 152 Health-Care Partners Comprehensive Anxiety, 45, 48, 56, 96, 136, 145 n.21, Care Program, 313 n.28 157-158, 167, 213, 266, 284, 311, HealthCare Foundation, 127, 368 323 home- and community-based care costs, Approaching Death report 300, 569 progress since and remaining gaps, Natural Death Act of 1976, 121 407-422 palliative care education requirements, Asians/Pacific Islanders, 60, 152, 156 230, 232 Assessing Care of Vulnerable Elders pediatric palliative care program, 68, (ACOVE) initiative, 79, 84-85, 410 427, 569 Associated Press-National Opinion Research POLST program, 123, 177 Center, 127 Campaigns, public education and Association of American Medical Colleges, engagement 222-223, 227 audiences, 358-360 Association of Pediatric Hematology and channels, 360-361 Oncology Nurses, 67, 423 evaluation, 361-362 Association of Professional Chaplains, 247, examples on health-related topics, 418 378-383
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From page 589... ...
burdens on, 14, 96, 138, 266, 276, 297, accountable care organization policies, 452-453 317, 318-319, 472 characteristics, 8, 46, 92-93, 94-95 advance care planning policy, 369-370
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From page 590... ...
nursing home residents, 216, 224 advance directives, 134, 141-142, 143, nurturing patients' hope, 162-163 356, 426 palliative care, 64, 288, 290, 431 age at death, 35, 540-542, 543 professional education and training, 225, causes of death, 31, 35, 36, 542, 544, 226, 229, 230, 231, 232 n.11, 233, 546-547 234, 235-237, 241, 250, 251-252, end-of-life trajectories and symptoms, 428, 451 47, 48 prognosis discussions, 92, 160-161, 164 mortality rates, 34, 35, 536-537, 540- 165, 212, 213 542, 551 and quality of care, 79, 190, 283
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From page 591... ...
, 315, 475 hospitals, 68 Community-State Partnerships to Improve pediatric care, 68 End-of-Life Care, 33, 323 primary care and, 49-50, 68 Community-Wide End-of-Life/Palliative public testimony on, 448-451 Care Initiative, 358 racial and ethnic differences, 155-156 Compassionate Friends, 354 n.4 transitions between care settings and, 52 CompassionNet, 68 Conversation Project, 124, 125, 352-353, Complex chronic conditions 354, 356-357, 360, 420 age and, 36 Coordinated-Transitional Care (C-TraC) , children, 34, 546-547, 551-552, 554- 53-54 559, 571 Coordination of care (see also Delivery of contributing factors, 34-35 end-of-life care)
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From page 592... ...
592 INDEX continuity of care and, 50-51 dementias and, 37, 270, 303, 328, 509 and costs of care, 4, 25 510, 517 disease management programs, 54, 186, demographic characteristics, 506-507 212, 304, 305, 306 delivery of care and, 16, 25 by family, 14 distribution and trends, 488-489 importance of, 46, 50, 86 emergency services and, 281-282, 569 incentive policies and, 17, 275-302, epidemiology of chronic conditions and, 329-330 499-501 interdisciplinary team approach, 7, 10, family caregivers and, 301 13, 58, 68, 71-72, 79, 101, 102, 103, fiscal challenges, 267-271 226, 244, 424, 429, 563-564, 571 fragmentation of care and, 4, 25 long-term care, 304-305, 308, 470 geographic variations, 22, 305-307, 458 measurement of, 51 n.2, 81 459, 510-512 medical homes, 51-52, 82, 302, 303, goals of care discussions and, 510 314, 469 health characteristics and, 508-510 Medicare and, 304, 305, 308, 315-316, hospice care, 292-295, 519-522 330 hospitalization, 22, 266, 280-281, 512 multiple chronic conditions and, 50-51 513, 564, 565-567, 568, 569 palliative care and, 63, 68, 71, 84, identifying high-cost patients, 525 322 identifying target population for primary care and, 49-51, 68 cost-saving public testimony on, 448-451 informal care, 37, 38 and quality of care, 31, 76, 81, 82, 265, interventions, 523-525 303-306 life expectancy and, 35-36 and satisfaction with care, 76 long-term care, 273, 274, 296, 300-301, scenario of lack of, 55, 56-57 458, 502 transfer of patient information across magnitude and proportion, 502-503 settings, 10, 17, 50, 103, 181-185, Medicaid, 16, 268, 271, 273, 291, 298, 188, 331 300-301, 302, 303, 312, 459, 495, and transitions between care settings, 497, 498, 499, 502, 522 49-52, 53, 54, 100 Medicare, 139, 268, 276, 279-280, 283 and utilization of acute care services, 9, 284, 451, 504, 519-523 50-51, 86 nursing home population, 37, 272, 273, Costs of end-of-life care (see also 277, 296, 310, 312, 457, 465, 489, Financing and organization of end- 490, 492, 493, 494, 495, 496, 497, of-life care) 498, 499, 501-502, 509, 514, 515, advance care planning and, 12, 18, 139- 517, 522 141, 369, 510 palliative care, 74, 264, 274, 287-292, age and, 494, 495, 499 327, 329, 519 cancer patients, 37, 140-141, 275, 290, patient characteristics associated with, 508, 510, 520 505-513 changes over time, 4, 25, 504 by payor, 498-499 chronic conditions and functional percent of gross domestic product, 15 limitations and, 22-23, 36, 37, 266, 16, 267, 268, 283-284, 308 491-494, 516-517 populations with highest costs, 489-499, clinician-patient communication and, 25, 513 290 preferences of patients and, 2, 15, 21, concurrent care, 567-570 510 coordination across programs and, 4, public attitudes about, 3, 18, 451-452 16, 25 and quality of care, 15, 22, 275-302 data limitations and gaps, 517-518 race/ethnicity and, 494-497
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family caregivers, 92-97, 102 Critical Care End-of-Life Peer Workgroup, hospice care, 46, 48-49, 50, 54, 56, 59, 77, 229, 231-232, 234, 323 60-62, 63, 65, 100, 101 Cruzan, Nancy Beth, 364 hospital environment, 280-282 interdisciplinary team approach, 7, 10, 13, 58, 64, 67, 68, 71-72, 79, 86, 95, D 101, 102, 103, 226, 234, 244, 245, 249, 424, 429, 563-564, 571 Dana-Farber Cancer Institute, 68 managed care environment, 285-287 Data sources and methods, this study multiple chronic conditions and, 50 additional activities, 393-394 in nonhospital settings, 69-70 commissioned papers, 394 palliative care, 7, 51-52, 55, 58-74, 97, committee description, 391-392 103, 287-292 literature review, 392 preferences of family and patients and, public meetings, 392-393, 395-405 55, 56 written public testimony, 443-454 primary care, 49-52, 70 Death and dying prognosis problem, 47, 87-92, 101-102 Last Acts campaign, 33, 353, 361 providers, 48-49 perceptions of, 445-446 public testimony on, 448-451 public venues for discussions of, quality of care, 55-57, 74-87, 275-302 352-355 race/ethnicity and, 49, 60 site of, 33-34, 54, 81, 119, 468 recommendations, 10, 103-104 trajectories and symptoms, 22, 30-31, research needs and funding, 32, 97-100 46-48 strategy for changing, 40 Death Cafe, 352, 354, 420 trajectory and symptom challenges 46Death over Dinner, 352, 354, 420 48, 49 "Death panels" controversy, 12, 120, 132, transitions between care settings, 49-52, 366-370 55, 100 DeathWise, 352, 354, 420 unwanted care, 55-58 Decision making by patients and families Dementias aids, 170-172 advance care planning, 137, 171, biases and heuristics, 167-168 215-216 choice architecture, 168-169, 188 Alzheimer's disease, 36, 37, 38, 61, 165, default choices on advance directives, 215, 295, 311, 444, 456, 509 169-170 challenges in end-of-life care, 49, 96, and patient-centered care, 166-172 266 research needs, 188 chronic illness with, 48 shared, 1, 4, 17, 80, 99, 118, 136, 138, costs of care, 37, 270, 303, 328, 509 166-172, 173, 174, 182, 188, 320 510, 517 n.32, 326, 331, 351 hospice care, 74, 81 stages of change theory and, 188 hospitalizations, 54, 56-57, 298, 324, video materials and, 171-172 328
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(EPEC) Program, 222, 229-230, 251, advance care planning effects, 2, 11, 415, 428 136, 137-139, 367
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, 313 n.28 Financial Alignment Initiative, 315-316 Goodman, Ellen, 124 home- and community-based services, Gundersen Health System, 141 315 hospice and home care, 319 impacts of, 455-456 incentive policies and coordination of H care, 275-302, 329-330 Hammes, Bernard, 181 integrated models, 466-467 Harvard Medical School Program in long-term care, 16, 266, 268, 271, 274, Palliative Care Education and 275, 278, 279, 287, 296-303, 306, Practice, 228 315-316, 320, 327-328, 475, 478- Health and Retirement Study (HRS) , 38, 479, 498, 499 47, 89-90, 91-92, 119, 144 n.20, 270 major programs, 271-275 n.7, 501, 502, 503, 504, 506, 508, palliative care, 33, 59, 61, 68, 98, 287- 509, 513, 514, 519 292, 329 Health care agents, 11, 18, 118, 122, 124, payers, 459-460 126, 129-132, 134, 135, 136, 137 private-sector initiatives, 321-322 139, 142, 145, 147, 150, 157, 158, and quality of care, 467-469 160, 164-166, 167, 173, 174, 175, recommendations, 16-17, 330-331 176, 179, 183, 184, 185, 186, 187, reform impacts, 469-478 189, 211, 212, 215, 216, 349, 385, research needs, 326-328 386, 387, 389 social services integration, 309-314, 329 Health Care Financing Administration, 33 state policy reforms, 322-323 Health Information Technology for transparency and accountability, 324- Economic and Clinical Health 326, 329 (HITECH)
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From page 596... ...
Kaiser Family Foundation, 367 60-62, 63, 65, 100, 101 Hispanics dementia patients, 54, 56, 74, 81 advance care planning, 60, 151, 154, 188 growth of, 8, 20, 60-62, 100, 102-103 costs of care, 497, 506, 507, 569 hospital programs and referrals, 61, direct care workers, 249 63 hospice use, 153, 569 in-home care, 7, 63, 65, 75, 125, 294 insurance payor, 495, 507 interdisciplinary team approach, 101, life expectancy, 34 102, 103 literacy levels, 156 life expectancy and eligibility, 8, 30, mortality data, 536, 537 294, 321, 387, 388, 412, 426 preferences for end-of-life care, 60, 149, and longevity/survival, 30, 62, 73 n.12, 154, 348 74, 101 site of death, 153, 553-554 Medicaid and, 62, 244, 298, 319, treatment differences, 49 426-428, 460, 463, 465, 477-478, utilization of services, 506, 513 569 HIV/AIDS, 61, 62, 97, 142, 143, 356 n.5, Medicare benefit, 30, 59, 62, 83, 88, 96, 444, 476 102, 154, 238, 247, 273, 274, 277, Hollywood Health and Society, 353 285, 292-295, 388, 411, 412, 457, Home (see In-home care) 459, 460, 463-466, 470, 475-476, site of death, 33, 34, 63, 73 477, 478, 480, 522 Home- and community-based services, 94, in nursing homes, 61, 65, 74, 81, 152 298, 299-302, 312-313, 315, 316 153, 278, 295, 298, 462, 465-466, Home health 479 agencies, 49, 50, 61, 70, 71 n.11, 74, open-access, 522-523 98, 246, 249, 306, 422, 424, 432, pediatric services, 61-62, 98 461-462 in prisons, 62
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In-home care (see also Caregivers, family) Hospital Readmissions Reductions Program, communications technology and, 70 53 costs, 37, 38 Hospitals/hospitalization (see also hospice, 7, 63, 65, 75, 125, 294 Emergency department services; Medicare and, 319, 523 Intensive care/critical care)
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From page 598... ...
, 537-538, Intensive care/critical care 539 admissions, 51 Kubler-Ross, Elisabeth, 60 advance directives, 126, 151, 214, 216 appropriateness of care, 130, 280-281, L 288, 557 clinician communication, 138, 165, 230, Last Acts campaign, 33, 353, 361 428 Liaison Committee on Medical Education, deaths, 68, 81, 520, 557 226, 231 dementia patients, 49 Life Cycle Model of Advance Care family conferences, 164, 213, 236 Planning financial issues, 140, 267, 280-281, 288, for children, 187 289, 291, 329-330, 364-365, 458, in final year of expected life, 187 506, 517 at initial diagnosis, 186 futile care, 288, 364 milestone specific, 185 impacts on family, 138 primary care setting, 186 nurses/nursing, 232 situation-specific, 186 palliative/hospice care and, 63, 66, 73, at worsening health, 186-187 74, 77, 187, 279, 289, 291, 329, Life expectancy (see also Prognosis) 457, 463, 473, 519, 520 and assisted suicide, 363 pediatric and neonatal, 68, 89, 230, 428, at birth, 30, 34, 35-36, 308 429, 542, 557 and hospice eligibility, 8, 30, 294, 321, and preferences of patients, 94 387, 388, 412, 426 primary care and, 51 palliative care and, 62, 167, 560 professional education and training, patient preferences for discussing, 232 152 and prognosis/survival status, 89, 90, and pediatric palliative care eligibility, 92, 119, 165, 512 424, 426 quality of care measures, 77, 79 predicting, 89, 91, 160 race/ethnicity and, 49, 151, 506 race/ethnicity and, 34 transitions between services and, 298 LIVESTRONG Foundation, 414 utilization, 33, 214, 267, 279, 329-330, Living Well at the End of Life poll, 347 458, 512, 517, 519, 520, 557 Living wills, 117, 120, 122, 124, 132, 133, Interdisciplinary team approach, 71-72, 136 n.13, 147, 175, 181, 184, 366 101 n.14, 369, 385, 387 International Classification of Diseases Long-term care (see also Nursing home (ICD)
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INDEX 599 and concurrent care, 297 Massachusetts General Hospital, 72 coordination of services, 304-305, 308, MD Anderson Cancer Center 470 Supportive and Palliative Care Service, costs of care, 273, 274, 296, 300-301, 65, 67 458, 502 Texas Community Bus Rounds program, coverage of services, 459-460 383 defined, 387-388 Meals and nutrition services, 287, 309, 310, disability rates and, 37-38 312-313, 330 dual-eligible individuals, 273, 278, 302- Measuring What Matters initiative, 410 303, 457, 462, 522 Medicaid (see also Centers for Medicare & environment, 296-303 Medicaid Services) family needs, 312-313 ACA and, 16, 268, 275, 315, 319, 412, financing, 16, 266, 268, 271, 274, 275, 427, 469, 477-478 278, 279, 287, 296-303, 306, 315- and advance directives and advance care 316, 320, 327-328, 475, 478-479, planning, 121, 323, 464 498, 499 age-related costs, 499 home- and community-based, 94, 298, Cash & Counseling program, 97, 313 299-302, 312-313, 315, 316 and concurrent care, 278, 319, 427, in hospice, 295-296, 462 477-478 institutional, 297-298, 310 costs and expenditures, 16, 268, 271, insurance, 274, 315 273, 291, 298, 300-301, 302, 303, interdisciplinary care teams, 102 312, 459, 495, 497, 498, 499, 502, Medicare and, 275, 287, 297-298, 522 459-460 data for health services research, 525, need for, 37 539 palliative care, 27, 59, 69, 389 demonstration and waiver authority, 308 professional education and training, and direct care workers, 249 229-230, 233, 247 disease management programs, 305-306 quality of care, 247, 278 dual eligibility, 271-272, 273, 278, 286, social services, 329 287, 298, 302-303, 310, 315, 328, spiritual care, 247 386, 462, 474-475, 522 Longevity/survival electronic health record incentives, 184 advance care planning and, 136 enrollees, 271-272, 273, 299, 459 cancer patients, 62, 69, 215 financing, 269, 271, 315-316, 330, 412, concurrent and, 72 463-464, 467, 474, 522 cost of care and, 22 health insurance coverage, 273, 275, hospice care and, 30, 62, 73 n.12, 74, 412, 426-427, 459-460, 477-478 101 Home and Community Based Services palliative care and, 62, 68, 69, 72-73, program, 298, 299-302, 315 98, 101, 215, 322 n.33, 560 home health, 279, 320, 459-460 hospice care, 62, 244, 298, 319, 426 428, 460, 463, 465, 477-478, 569 M impacts of policies, 278-279, 298, 569 long-term-care/nursing home assistance, Managed care 10, 16, 54, 171, 264, 268, 271, 272, and advance care planning, 298 n.18 273, 275, 277, 278-279, 285, 295, for dual-eligible individuals, 286, 412 296, 297-298, 302, 306, 307, 312, Massachusetts 324, 388, 448, 456, 457, 458, 459 hospice care, 74 460, 461, 462-463, 465, 470, 479, Pediatric Palliative Care Network 498, 499, 501, 502, 503, 525 program, 68, 424, 425 managed care, 285-286, 303, 323, 326
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spending, 508-510, 512, 516, 517, Medicare (see also Centers for Medicare & 525 Medicaid Services) home care, 319, 523 ACA-authorized changes, 314, 315-316, hospice benefit, 30, 59, 62, 83, 88, 96, 319, 469, 478 102, 154, 238, 247, 273, 274, 277, accountable care organizations, 317, 285, 292-295, 319, 388, 408, 411, 318-319, 472 412, 457, 459, 460, 462, 463-466, and advance care planning, 121, 124, 470, 475-476, 477, 478, 480, 522 139, 464, 510 and hospitalization, 52-53, 277, 280 ancillary services, 284 281, 512-513, 520 bundled payment model, 314, 316, 327- limitations of payment approaches, 328, 455, 458-459, 469-475, 479 460-466 burden of illness in eligible populations, long-term care, 275, 287, 297-298, 16, 33, 36, 37, 52-53, 139, 265, 503, 459-460 504-505 managed care, 466-457 (see also Care Choices Model, 412, 476 Medicare Advantage)
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, 9, 78, 79, 84, Medicare Advantage, 50-51, 53, 276, 278, 85, 87, 214, 246, 410 285-286, 309, 320, 321, 322, 326, National Council on Aging, 127 327, 388, 459, 466, 502 National Data Set, 430 Medicare-Medicaid Coordination Office, National Family Caregiver Support 272, 315, 412 Program, 97, 310 Medicare Modernization Act of 2003, 388 National Framework and Preferred Practices Medicare Payment Advisory Commission for Palliative and Hospice Care (MedPAC) , 272, 286, 295, 320, 413, Quality, 61, 172-173, 185, 410, 465, 466, 479 425-426 Medicare Prescription Drug Improvement National Healthcare Decisions Day, 124, and Modernization Act of 2003 354, 356-357, 421 (MMA)
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From page 602... ...
, 537-538, 539, 559 palliative care programs, 563-564 New Mexico, 70, 363 transitional care, 52, 53, 54 New York State Nursing Home Compare, 468, 480 Community Conversations on Nursing home residents Compassionate Care, 122, 358 advance care planning and directives, CompassionNet, 68 126, 129, 132, 151, 152, 171, 176, MOLST program, 123, 175, 177, 178, 177, 181, 182, 188, 216, 241, 286, 179, 182, 183, 358 448, 468 PACE program, 177 alternative care for, 299, 301, 302, 303, pediatric palliative care, 68, 427 310, 311, 312, 467, 522 site of death, 553 clinician communication with, 216, 224 utilization and costs, 152-153, 291, 519, concurrent care, 278 553 costs of care, 37, 272, 273, 277, 296, North Carolina, 68, 123, 421, 427 310, 312, 457, 465, 489, 490, 492, North Dakota, 68, 427, 458 493, 494, 495, 496, 497, 498, 499, Northeast Ohio Medical University, 227 501-502, 509, 514, 515, 517, 522 Nurses/nursing decision-making capacity, 119, 137, 189 advance care planning role, 185, 186, dementias/cognitive impairment in, 54, 389, 448 81, 216, 286, 295, 324, 328, 509 case/care managers, 53, 294, 304, 322, hospice care, 61, 65, 74, 81, 152-153, 476 278, 295, 298, 462, 465-466, 479 certifications, 14, 15, 27, 48-49, 59, hospitalizations, 52, 54, 281, 286, 297, 242, 252, 417, 429 298, 307, 324, 462, 470, 501, 502 communication with patients, 129, 162, language barriers, 60 226, 231, 235 long-term care insurance, 274, 498, 499 delivery of care, 42, 50, 53, 70 managed care for dually eligible discharge advocate, 53 individuals, 286, 412 education of patients and caregivers, 53, Medicaid policies and payments, 16, 54, 73 273, 275, 277, 278-279, 285, 312, faculty development, 222, 229-230, 231- 324, 457, 462, 470, 498, 499 232, 415, 416 Medicare policies and payments, 272, home visits, 70, 273, 292, 294, 298 278, 297, 298, 306, 307, 324, 388, n.18, 321, 539, 552, 553, 571 451, 457, 458, 459, 461, 462, 470, intensive care, 232 479, 498, 499, 501, 502 interprofessional collaboration, 226, palliative care, 7, 27, 55, 58, 59-60, 66, 228, 229, 230, 234, 252, 428 69-70, 72, 102, 243, 288, 479 medical orders, 122, 175, 389 preferences for treatment, 16, 176, 177, palliative and hospice care, 8, 10, 14, 216 27, 52, 59, 71, 85, 100, 101, 103, prognosis, 90, 91 222, 223, 226, 231, 232, 237-238, racial, ethnic, and cultural differences, 240-243, 251, 252, 294, 321, 322, 152-153, 496, 497 385, 389, 409, 417, 423 quality of care, 54-55, 74, 81, 247, 277, primary care, 50, 286 278, 286, 324, 326, 468, 480, 526 professional education and development, research needs, 328, 526 13, 14, 15, 221, 222, 223, 225, 226, satisfaction with care, 74, 75 228, 229-230, 231-232, 237-238, shortage of care for, 37, 328 240-243, 251, 415, 416, 423, 428 site of death, 33, 54, 81, 119, 468
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From page 603... ...
, 308 68, 69, 86, 95, 96, 245, 249 financing and policy, 33, 59, 61, 68, 98, 287-292, 329 gaps in knowledge, 8, 570-571 P geriatric care and, 52 Palliative care growth of specialty, 8, 60, 62-65, 100, access to, 4, 10, 50, 64, 86, 102, 103, 102-103, 221, 250 320-321 guidelines, 9, 67, 73, 78, 84, 87 accountable care organizations and, 292, home-based, 70, 72, 73, 74, 290, 294, 472-473, 479 320, 321-322, 328 advance care planning, 60, 66, 137, 143, and hospice, 2, 7, 10, 18, 58, 59, 60-62, 155, 160-161, 169, 172-173, 175, 70 215 n.13 hospital-based, 7, 8, 15, 27, 59, 60, 61, approach and components, 8, 9, 55, 58- 63-64, 65, 66, 68, 69, 71-72, 84, 85, 60, 63, 65-67, 68, 85, 86, 560 98, 100, 290, 291, 292, 562-564 basic, 7 n.2, 14, 20, 27, 52, 59, 70, 221, and intensive care, 63, 66, 73, 74, 77, 224, 225-226, 229, 233, 235, 238, 187, 279, 289, 291, 329, 457, 463, 251, 252, 385, 416 473, 519, 520 biopsychosocial model of care, 62-63 interdisciplinary team approach, 7, 10, cancer patients, 7, 62, 65, 67, 68, 69, 13, 58, 64, 67, 68, 71-72, 79, 86, 95, 70, 72, 73, 77, 171, 215, 228, 290, 101, 102, 103, 226, 234, 244, 245, 294, 414, 423, 519, 546, 560 249, 424, 429, 563-564, 571
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From page 604... ...
, 98-99, 419 252-253 Patient Protection and Affordable Care Act rehabilitation therapists, 14, 247 (ACA) , 25 reimbursement policies, 283, 285, 287- accountable care organizations, 279 292, 294, 301-302, 320, 328 280, 310, 317-319 research needs and funding, 97, 98-99, and advance care planning, 12, 120, 100, 228 132, 366-370 satisfaction with care, 62, 64, 69, 70, bundled payment approaches, 316, 327 75, 290, 322 328, 469-475 screening/assessment, 7-8, 65-68, 71, 77, and concurrent care, 319, 320, 412, 89, 92, 101 427, 475-476, 477 shortage of specialists, 224, 251 cost containment, 264, 265, 314, social services integration, 313-314, 330 315-316
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From page 605... ...
Project, 79, cost drivers, 487, 526 84-85, 410 death and dying, 20, 30-31, 149, 445Pediatric Early Care program, 423 446, 451 Pediatric end-of-life care (see also Children) living wills, 117 advance care planning, 68, 134, 136, politicization of end-of-life care and, 141-144, 146, 173, 184, 187, 188, 367, 446 425-426, 429, 432 and preference for care, 117, 149 assessment scales, 67-68 prognosis, 164-165 clinical data, 538-539 public education and, 371, 451 complex chronic conditions, 34, 546- quality of care, 20, 80, 21-22, 247 547, 551-552, 554-559 quality of life, 146, 147
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From page 606... ...
, 17, 121, 123, 172, delivery of, 49-52, 70 173-179, 180, 182, 183, 184, 187, geriatrics, 10, 50, 52, 227 n.5, 232, 282 188, 189-190, 217-219, 323, 331, and hospital admissions, 51 358, 389, 448 pediatrics, 68 Physicians (see also Clinician-patient providers and roles, 49-50 communication) Professional education and development in quality of end-of-life care, 282-284 end-of-life care treatment preferences of, 23-24 advance care planning, 181, 225, 227, Pioneer accountable care organization 237 program, 317, 318, 468, 471, 472, chaplains, 15, 222, 228, 230, 247-248, 473 252, 418 Practice-based research networks, 99 communication skills, 13-14, 225, 226, Preferences of patients and families 229, 230, 231, 232 n.11, 233, 234, advance care planning and, 11, 12, 13, 235-237, 241, 250, 251-252, 428, 18, 125-127, 144-155, 189, 369, 510 451 cancer and, 55, 132, 133, 140, 165, continuing medical education, 222, 229 171, 214, 215, 510 231, 239, 243, 244, 251, 415, 428 clinician discussion with family and cross-cutting considerations, 233 patients, 11, 13, 20, 350-352 curriculum, 13, 221-222, 223, 226-233, and costs of care, 2, 15, 21, 510 234, 237, 245, 250, 251, 415, 416, delivery of care, 55, 56, 94 417, 428, 429, 451 honoring, 31, 119 domains of clinical competence, 225 nursing home residents, 16, 176, 177, faculty development, 13, 222, 228, 229 216 230, 231-232, 236, 237, 415, 416, palliative care, 77, 169 431 physician preferences compared to, funding/fellowships, 32, 221, 222, 226, 23-24 235, 238, 239, 240, 244, 415, 416, by population, 141-157 417, 428 public education and, 19 hospice care, 13, 14, 48 public perceptions of death and dying impediments to changing culture of care, and, 117, 149 13, 225-237 and quality of care, 2, 16-17, 22, 77, infrastructure, 223, 251 307-314 interprofessional collaboration, 13, 226 quality of life, 11, 24 knowledge base of palliative care, 223 race/ethnicity and, 152-154 licensure and certification, 14, 48, 59 n.6, recommendations, 10, 16-17, 19 84, 100, 221, 228-229, 238-240, 241, site of death, 33-34, 119 242, 243, 247-248, 250-251, 418 supportive care versus acute services, long-term care, 229-230, 233, 247 22
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From page 607... ...
, 32, 221-253 222, 244, 416 pharmacists, 14, 245-246 Public education and engagement (see also physician specialists, 238-240 Campaigns, public education and progress and continuing needs, 221-225, engagement) 250 advance care planning, 18, 19, 20, 32, public health schools, 232-233 121-124, 125, 172-173, 345, 346 public testimony on importance, 451 347, 352-353, 354, 355, 356-357, recommendations, 14-15, 252-253 358, 359, 360, 370, 371, 420, 421 rehabilitation therapists, 14, 248 attitude trends, 347-348 social workers, 14, 243-244 and cancer care, 365 team roles and preparation, 13, 237- choices of care, 348-350 249, 251 climate and venues for discussions of undergraduate and graduate medical death and dying, 352-355 education, 226-229 controversial issues, 362-370 Prognosis knowledge about end-of-life care, APACHE tool, 92 347-352 cancer care and, 30, 88, 89-90, 91, 294, palliative care, 18, 347, 348-349, 351, 466 353, 358, 364, 368 CARING criteria, 89-90, 91 preferences for care, 350-352 Cheng factors, 89-90, 92 public testimony on importance, 451 clinician-patient communication, 92, recommendation, 19-20, 370-371 160-161 social media, 365-366 dementias, 88, 91 terminology and, 348-350 ePrognosis, 92 Health and Retirement Study, 91-92 hospitalization and predicted probability Q of death, 90, 91, 92, 565-567, 568 Quality-adjusted life-year (QALY)
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From page 608... ...
608 INDEX hospice, 7, 77-78, 79, 81, 83-85, 86, long-term care/nursing homes, 54-55, 411 74, 81, 247, 277, 278, 286, 324, intensive care/critical care, 77, 79 326, 468, 480, 526 limitations of current efforts, 76-77, managed care environment, 285-287 80-82 Medicare and, 286-287, 293-294, 307, Measuring What Matters initiative, 324, 326 84-85 palliative care, 7, 8, 72, 74, 76-87, 96 Medicare requirements, 7, 77-78, 79, patient, family, or caregiver education 81, 83-85, 86, 411 and, 76 National Committee for Quality physician services, 282-284 Assurance assessment, 82 preferences of patients and families, 2, National Consensus Project for Quality 16-17, 22, 77, 307-314 Palliative Care Clinical Practice proposed core components, 85-87 Guidelines, 9, 78-79, 84, 85, 87, public perceptions of, 20, 21-22, 80, 247 214, 246, 410 public testimony on, 448-451 National Quality Forum criteria, 77-78 reimbursement policies and, 4, 16, 25, opportunities for enhancing, 82-85 137, 269 n.6, 276, 279-280, 318, PEACE Project, 79, 84-85, 410 451-452, 473, 504-505, 508 research needs, 98 Quality of life satisfaction indicator, 80, 518 advance care planning, 147, 148 site-of-death measure, 81 cancer and, 72, 73, 290 transparency, 28 concurrent care and, 72, 412 Quality of end-of-life care FACT-L scale, 72 ACA and, 264, 265, 314, 327-328, 469 hospice care and, 30, 63, 65 accountable care organizations and, 84, palliative care and, 1-2, 7, 30, 45, 46, 317, 318, 468, 469, 473 58, 59, 62, 65, 69, 72-73, 74, 98, advance care planning and, 135-137, 101, 233, 290 176-178 Quinlan, Karen Ann, 363-364 ambulatory care environment, 282-285 approaches to improving, 76-77 cancer care, 77, 81, 82, 411 R chaplains and chaplaincy services and, Racial, ethnic, and cultural differences (see 247 also specific populations) in clinician-patient communication, 79, advance care planning, 11, 49, 125, 148 190 155, 188 coordination of care and, 31, 76, 81, 82, clinician-patient communication and, 303-306 149-150, 152, 154, 155, 522 costs of care and, 15, 22, 275-302 and continuity of care, 155-156 delivery of care and, 55-57, 74-87, and costs of care, 494-497 275-302 delivery of care, 49, 60 dementias and, 38, 49, 54-55, 56-57, 74, diversity trends in the United States, 38 79, 249, 286, 411, 412 hospice patients, 60, 61-62, 150, 153 emergency departments, 281-282, 453, and intensive care utilization, 49, 151, 506 560 life expectancy, 34 financing and organization of care and, Medicaid enrollees, 495, 497 467-469 nursing home residents, 152-153, 496, hospice, 8, 50, 62, 65, 74, 77 497 hospital environment, 57, 78, 81, 84, palliative care, 60, 240 85, 280-282 pediatric care, 552-554, 555 improvement approaches, 76-77 quality of care, 153 in-home care, 38, 65, 70
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From page 609... ...
, 39 318, 322, 327, 328-329, 386, 388, nursing home care, 328, 526 409, 461, 466, 467, 469, 470, 472, palliative care, 97, 98-99, 100, 228 473, 503, 504-505, 523 pediatric care, 98 financial incentives and fragmentation of practice-based research, 99 services, 17, 275-302, 329-330 quality of research, 99 hospice care, 30, 59, 62, 83, 88, 96, Respecting Choices, 141, 143 n.19, 172 102, 154, 238, 247, 273, 274, 277, 173, 179-181, 212 285, 292-295, 319, 388, 408, 411, Respite care, 97, 243, 274, 292, 302, 309, 412, 457, 459, 460, 462, 463-466, 310, 312-313, 330, 424, 427, 450, 470, 475-476, 477, 478, 480, 522 452, 464, 476, 539, 569 hospital care, 53, 277, 280-281, 319, Rhode Island, nursing home deaths, 33 471 Rivlin, Alice, 265
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From page 610... ...
, 300-301 96, 98, 165, 187, 233, 241, 242, Surveillance, Epidemiology, and End Results 244, 321, 411, 422, 423, 424, 426, (SEER) -Medicare database, 51 428, 430, 431, 432, 453, 535, 552, Survey of Income and Program 564, 571 Participation, 38 education and training of caregivers, 311 Sutter Health Advanced Illness Management essential services, 309-314 program, 140, 322, 408, 412
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From page 611... ...
, 17, 235, 275 Texas, 74, 183, 237, 364, 414 advance care planning model, 146 Community Bus Rounds program, 393 Coordinated-Transitional Care (C-TraC) , Thibault, George, 234 53-54 Toolkit of Instruments to Measure End-of- Faculty Leader Project for Improved Life Care, 410 Care at the End of Life, 60-61, 72, Transitional Care Model, 53 222, 234 n.12, 274, 291, 330 Transitions between care settings National Center for Patient Safety, 81 ACA and, 97 palliative care benefit, 61, 72 and advance care planning Patient Aligned Care Teams, 53 documentation, 134 Program of Comprehensive Assistance to Aetna Transitional Care Model, 53 Family Caregivers, 97 burdensome, 52-55 Utilization of services communication across settings, 53 advance care planning and, 140 and continuity and coordination of care, cancer and, 519 49-52, 53, 54, 100 emergency department services, 17, 52, dementias and, 54, 328 73, 74, 211, 264, 266, 267, 281-282, and hospital readmissions and ER visits, 290, 304, 314, 467, 519, 520 52-53, 54, 57, 100, 298 expenditures, 456-458, 512-513, and intensive care, 298 525-526 Medicare nursing home policy and, 52, family caregivers and, 267, 309 54, 277, 281, 286, 297, 298, 328, 449 fragmentation of care and, 9, 50-51, 86 nurse managers, 52, 53, 54 geographic variations, 305-307, 458-459 and reimbursement policies, 53 hospice, 63 and satisfaction with care, 76 intensive care, 33, 214, 267, 279, 329Transparency and accountability, 10, 16, 330, 458, 512, 517, 519, 520, 557 17, 28, 39-40, 82, 84, 103-104, 146, nursing home residents, 306, 307, 456, 265, 269 n.6, 321, 324-325, 329, 501 330, 365 palliative care and, 69, 73, 74, 281, 290, 329 screening high-cost patients by patterns U of, 525-526 Understanding Treatment Disclosure (UTD)
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From page 612... ...
612 INDEX Whites (non-Hispanic) site of death, 153, 553-554 advance care planning, 125, 128, 152, treatment differences, 49 154-155 utilization of services, 506 costs of care, 495, 496, 497, 506, 507, Withholding/withdrawal of life support, 88 569 n.17, 121, 147, 166, 363-364 health literacy, 157 Writers Project, 353 hospice use, 153 World Health Organization, 58, 67 life expectancy, 34 population distribution, 149 preferences for end-of-life care, 148-149, Y 322, 350 Yale School of Medicine, 237
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