Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (2015)

Index

A

AARP, 96, 175, 299, 312

ACA (see Patient Protection and Affordable Care Act)

Accountable care organizations (ACOs)

ACA and, 279-280, 310, 317-319

Advance Payment Model, 317

alternatives to, 320

care management practices, 473

defined, 317

Medicare policies, 317, 318-319, 472

outpatient care, 292

palliative and hospice care, 292, 472-473, 479

patient characteristics, 318

performance measurement benchmark, 317, 472

Pioneer program, 317, 318, 468, 471, 472, 473

population-based payment model, 318

proposed improvements, 318-319

and quality of care, 84, 317, 318, 468, 469, 473

reimbursement and payment approaches, 279-280, 317-318, 468, 471, 472, 479

Shared Savings Program, 315, 317, 318, 468, 472, 473

and social services, 310

Accreditation Council for Graduate Medical Education (ACGME), 14, 252, 417, 429

Activities of daily living (ADLs), assistance with, 9, 86, 144 n.20, 241, 248, 297, 302, 491-492, 501, 508, 509, 513

Acute Physiology and Chronic Health Evaluation (APACHE), 92

Adams, Lisa Bonchek, 365

Administration for Community Living, 279, 301

Administration on Aging, 299, 301, 311

Advance care planning

ACA and, 12, 120, 132, 366-370

age and, 126, 136

autonomy principle and, 124-125, 152, 166, 181

barriers and disincentives, 11, 12, 117, 125, 126-129, 141, 154-155, 213

cancer context, 137, 140-141, 169, 170, 172, 214-215

for children and youth, 68, 134, 136, 141-144, 146, 173, 184, 187, 188, 356, 425-426, 429, 432

choice of health care agent, 129-132, 172

chronic obstructive pulmonary disease context, 137, 212-213

clinician-patient communication, 2, 3, 6, 11-13, 18, 50, 117, 118, 128-129, 142, 146, 149-150, 152, 154, 155, 157-172, 190-191, 212, 213, 237, 345, 448

cognitive impairment/dementia context, 119, 137, 145-146, 215-216

consultations and discussions, 118, 128-129, 143, 155, 185-186, 190, 211-212, 367, 510

Consumer’s Toolkit for Health Care Advance Planning, 123-124

Conversation Project, 124, 125, 352-353, 354, 356-357, 360, 420

and costs of health care, 12, 18, 139-141, 369, 510

current state of, 118, 124-141

“death panels” controversy, 12, 120, 132, 366-370

decision aids, 170-172

decision-making capacity, and methods of patients, 146, 167-172, 189

definitions, 120, 122, 385

demographic characteristics and, 125-127

disability context, 145-147, 178

effects on health care agents and families, 2, 11, 136, 137-139, 367

elderly people, 136, 144-145

electronic health records and, 17, 181-185, 188, 331

family involvement in, 18, 128, 143, 150, 152, 154, 164-166

financial planning considerations, 145, 212

health care agents, 11, 18, 118, 122, 124, 126, 129-132, 134, 135, 136, 137-139, 142, 145, 147, 150, 157, 158, 160, 164-166, 167, 173, 174, 175, 176, 179, 183, 184, 185, 186, 187, 189, 211, 212, 215, 216, 349, 385, 386, 387, 389

health literacy and, 156-157

heart failure context, 137, 211-212

historical review, 120-124

homeless or “unbefriended” people, 146-147

and hospice enrollment, 212

life cycle model (proposed), 185-187, 189-190

literacy level and, 155-157

long-term care, 164, 172, 174, 179, 218

managed care and, 298 n.18

Medicare and, 121, 124, 139, 464, 510

model initiatives, 172-185

National Framework and Preferred Practices for Palliative and Hospice Care Quality, 172-173, 185, 425-426

nurses, 185, 186, 389, 448

nursing home residents, 126, 129, 132, 151, 152, 171, 176, 177, 181, 182, 188, 216, 286, 448, 468

palliative care consultation, 60, 66, 137, 143, 155, 160-161, 169, 172-173, 175, 215 n.13

and patient/caregiver satisfaction with care, 135-137

POLST paradigm, 17, 121, 123, 172, 173-179, 180, 182, 183, 184, 187, 188, 189-190, 217-219, 323, 331, 358, 389, 448

preferences for care, 11, 12, 13, 18, 125-127, 141-157, 189, 369, 510

primary care and, 186

professional education and training, 181, 225, 227, 237

public education and engagement, 18, 19, 20, 32, 121-124, 125, 172-173, 345, 346-347, 352-353, 354, 355, 356-357, 358, 359, 360, 370, 371, 420, 421

public support for, 368, 370

and quality of care, 78 n.13, 80, 135-137, 176-178

quality-of-life considerations, 147, 148

racial, ethnic, and cultural differences, 11, 49, 125, 148-155, 188

recommendations, 12-13, 17, 19, 20, 190-191, 330-331, 370, 371

reimbursement policies and financial incentives, 17, 117, 121, 188-189, 320, 323, 331, 368, 369-370, 464, 468

religion and, 147-149, 178-179, 212

research needs, 187-189, 432

Respecting Choices initiative, 179-181

and satisfaction with care, 135-137

shared decision making, 1, 4, 17, 136, 138, 157, 166-172, 173, 174, 182, 188, 326, 331

social workers and, 185, 186, 243

state policies and, 323

and longevity/survival, 136

system factors in, 11, 154-155

and utilization rates, 140

VA model, 146

Advance directives

adherence to, 11, 55, 56, 88, 132-135, 175, 180, 189-190, 323, 326, 369, 448

barriers to having, 126-127, 147, 155, 157

Caring Conversations^® initiative, 123

for children, 134, 141-142, 143, 356, 426

clinician knowledge and training, 237

correlates of having, 126, 144, 148, 149, 151, 154

and costs of care, 139, 140, 510

default treatments, 169-170

definition of terms, 120, 122-123, 385, 387

do-not-hospitalize orders, 123, 152, 286

do not resuscitate (DNR), 60, 121, 123, 136, 146, 149, 152, 154-155, 174, 176, 184, 448

durable power of attorney for health care, 118 n.1, 122, 124, 130, 145, 366 n.14, 386

effects on family and health care agent, 138

electronic storage of, 11, 17, 172, 180, 181-185, 331, 448

Five Wishes, 142, 356, 426

flexibility in interpreting, 134-135

homeless people, 146

Honoring Choices, 354, 356, 357, 421

incorporation into medical record, 121, 180, 181

and intensive care, 126, 151, 214, 216

legislation and legal implications, 88, 121, 124, 126, 134-135, 366, 369-370

living wills, 117, 120, 122, 124, 132, 133, 136 n.13, 147, 175, 181, 184, 366 n.14, 369, 385, 387

logistical/system challenges, 134, 212, 303, 426

physician concerns with, 133

POLST compared to, 175-176, 178

promotion of, 172-173, 179-181

racial and ethnic differences, 11, 49, 150, 151, 154, 155

Respecting Choices, 141, 143 n.19, 172-173, 179-181, 212

shortcomings in, 11, 119-120

use outside the United States, 124

Advance Payment Model, 317

Advancing Palliative Care Research for Children Facing Life-Limiting Conditions, 431

Aetna, 53, 322, 408, 412, 476, 477

African Americans/Blacks

advance care planning, 129, 149, 151, 152-154

costs of care, 350, 495, 496, 497, 506, 507, 569

direct care workers, 249

hospice use, 152, 153, 154, 322, 569

insurance payor, 495

life expectancy, 34

literacy levels, 156

mortality data, 153

physicians, 240

preferences for end-of-life care, 60, 149, 153-154, 155, 322, 348, 364

site of death, 61-62, 152, 153, 553-554

treatment differences, 49, 153-154

trust issues, 153-154

utilization of services, 49, 506, 513

Age/aging (see also Children; Life expectancy)

and advance care planning, 126, 136

and cause of death, 31, 34

and costs of end-of-life care, 494, 495, 499

demographic trends, 35-38

Agency for Healthcare Research and Quality (AHRQ), 33, 79, 99, 211 n.36, 299 n.20, 537, 538

Aging with Dignity and Five Wishes, 352, 354, 356-357, 420

Aid to Capacity Evaluation, 145 n.22

Albom, Mitch, 352

Alliance for Excellence in Hospice and Palliative Nursing, 243

Alternative Quality Contract (AQC), 468, 473-474

Alzheimer’s disease, 36, 37, 38, 61, 165, 215, 295, 311, 444, 456, 509

Alzheimer’s Disease Supportive Services Program, 279

American Academy of Family Physicians, 51

American Academy of Hospice and Palliative Medicine (AAHPM), 78, 84, 223, 410, 415, 417

American Academy of Pediatrics, 51, 52

American Association of Colleges of Nursing, 231, 232, 415

American Bar Association Commission on Law and Aging, 123, 124

American Board of Family Medicine, 239

American Board of Hospice and Palliative Medicine, 238, 417

American Board of Internal Medicine, 239

American Board of Medical Specialties (ABMS), 238-239, 240, 417, 429

American Cancer Society, 414

American College of Physicians, 51

American Geriatrics Society (AGS), 78 n.13, 362-363

American Hospital Association, 173

American Indians, 152

American Medical Association, 33, 229

Physician Consortium for Performance Improvement, 85

American Osteopathic Association, 51

American Public Health Association (APHA), 32-33

American Recovery and Reinvestment Act of 2009, 387

American Society of Clinical Oncology, 73, 81 n.14

American Society of Health-System Pharmacists, 245-246

Anderson, Gloria, 152

Anxiety, 45, 48, 56, 96, 136, 145 n.21, 157-158, 167, 213, 266, 284, 311, 323

Approaching Death report

progress since and remaining gaps, 407-422

Asians/Pacific Islanders, 60, 152, 156

Assessing Care of Vulnerable Elders (ACOVE) initiative, 79, 84-85, 410

Associated Press-National Opinion Research Center, 127

Association of American Medical Colleges, 222-223, 227

Association of Pediatric Hematology and Oncology Nurses, 67, 423

Association of Professional Chaplains, 247, 418

Autonomy principle, 59, 78 n.13, 83, 124-125, 146, 150, 152, 166, 181, 316, 362, 364-365

B

Bereavement services/support, 28, 58, 68, 69, 72, 78-79, 96, 98, 165, 187, 233, 241, 242, 244, 321, 411, 422, 423, 424, 426, 428, 430, 431, 432, 453, 535, 552, 564, 571

Biopsychosocial model of care, 62-63, 235

Bipartisan Policy Center, 269

Blacks (see African American/Blacks)

Board of Chaplaincy Certification Inc., 247, 418

Board of Oncology Social Work Certification, 244

Board of Pharmacy Specialties (BPS), 246, 418

Budget Neutrality Adjustment Factor, 319 n.30, 413

Bundled Payments for Care Improvement Initiative, 316, 413, 471

C

California

Advanced Illness Management program, 322

cessation-of-treatment conflict, 364

Health-Care Partners Comprehensive Care Program, 313 n.28

HealthCare Foundation, 127, 368

home- and community-based care costs, 300, 569

Natural Death Act of 1976, 121

palliative care education requirements, 230, 232

pediatric palliative care program, 68, 427, 569

POLST program, 123, 177

Campaigns, public education and engagement

audiences, 358-360

channels, 360-361

evaluation, 361-362

examples on health-related topics, 378-383

Last Acts campaign, 33, 353, 361

messages, 360

sponsorship, 355, 358

Cancer care

ACA and, 314 n.29

advance care planning, 137, 140-141, 169, 170, 172, 214-215

advocacy groups, 64

clinician-patient communication, 152, 158, 159, 161, 165, 171-172, 214, 237

coordination of care, 51, 65, 67, 68

costs of care, 37, 140-141, 275, 290, 508, 510, 520

and depression, 65, 67, 290

eligibility for therapies, 65 n.8

hospice care, 30, 61, 62, 65, 295, 393, 465, 476, 520

incidence, 37

information preferences, 159

longevity/survival, 62, 69, 215

mortality data, 31, 34, 35, 36, 214, 456, 546

palliative care, 7, 62, 65, 67, 68, 69, 70, 72, 73, 77, 171, 215, 228, 290, 294, 414, 423, 519, 546, 560

pediatric, 35, 38, 48, 67, 275, 423, 545

preferences for care, 55, 132, 133, 140, 165, 171, 214, 215, 510

prognostication, 30, 88, 89-90, 91, 294, 466

providers of care, 48, 51, 230, 232

public engagement, 365

quality of care, 77, 81, 82, 411

quality of life, 72, 73, 290

research on treatments, 99

spiritual care, 140

trajectories and symptoms, 46, 48, 515, 534, 560

and utilization of services, 519

Cardiopulmonary resuscitation (CPR), 24, 78 n.13, 171, 173, 176, 216, 218, 387, 558-559

Care Choices Model, 412, 476

Caregiver Action Network, 354 n.4

Caregivers, family

bereavement services for, 96, 233, 424

burdens on, 14, 96, 138, 266, 276, 297, 452-453

characteristics, 8, 46, 92-93, 94-95

complicated grief, 138

and costs of care, 301

delivery of care, 92-97, 102

demand and supply, 8, 95, 102

depression and anxiety, 213

education and training, 2, 15, 53, 76, 97, 138, 245, 311, 330

financial toll, 94, 95

hospice eligibility requirements, 294

legislation protecting, 97

meals and nutrition services, 287, 309, 310, 312-313, 330

Medicare benefit structure and, 296-297

and palliative care, 58, 64, 67, 86, 95, 245, 249

prognosis and, 87

research needs, 96, 98

respite care, 97, 98, 243, 274, 292, 302, 309, 310, 312-313, 330, 424, 427, 450, 452, 464, 476, 539, 569

responsibilities, 8, 14, 19, 53, 93

suggestions for improving care, 450-451

support needed for, 4, 9, 10, 15, 73 n.12, 86, 97, 98, 233, 279, 304, 309, 310-311

and utilization of health services, 267, 309

CARING (Cancer, Admissions ≥2, Residence in a nursing home, Intensive care unit admit with multiorgan failure, ≥2 Noncancer hospice Guidelines), 89-90, 91

Caring Conversations^®, 123

Cash & Counseling program, 97, 313

Catholic Health Association, 178-179

Catholic Medical Association, 178

C-Change, 64

Center for Medicare & Medicaid Innovation, 81-82, 314

Center to Advance Palliative Care (CAPC), 66, 78, 100, 223, 224 n.2, 234, 352, 408, 419, 425

Centers for Disease Control and Prevention (CDC), 34, 383, 490-491, 499, 536, 537, 540, 541, 542, 543, 544, 547, 549, 551, 552, 553, 554, 555

Centers for Medicare & Medicaid Services (CMS) (see also Medicaid; Medicare)

accountable care organization policies, 317, 318-319, 472

advance care planning policy, 369-370

Budget Neutrality Adjustment Factor, 319 n.30, 413

Bundled Payments for Care Improvement Initiative, 316, 413, 471

Community-based Care Transitions Program, 53

data collection suggestions for, 525

electronic health records promotion, 184

emergency services policy, 281

Financial Alignment Initiative, 315-316

hospice conditions of participation, 244

Hospital Readmissions Reductions Program, 53

integrating Medicare and Medicaid financing for dual-eligible individuals, 474-475

National Health Expenditure estimates, 488, 489

palliative medicine subspecialty approval, 417

policy advances, 33, 53, 315-316, 319, 326

Quality Improvement Organization Program, 53, 79

quality-of-care measures and reporting requirements, 79, 83-84, 411, 469

Chaplains and chaplaincy services

certification, 14, 247-248, 250, 418

education and training, 15, 222, 228, 230, 247-248, 252, 418

and hospital mortality rates, 247

hospital staffing, 564

and Medicare Hospice Benefit, 247

palliative care specialty, 8, 10, 67, 247-248, 418

and perceptions of quality of care, 247

scope of services, 4, 7 n.2, 8, 10, 27, 49, 59, 67, 71, 101, 103, 221, 233, 237-238, 246-248, 251, 321, 385, 389, 426, 428, 450

Children (see also Pediatric end-of-life care)

advance directives, 134, 141-142, 143, 356, 426

age at death, 35, 540-542, 543

causes of death, 31, 35, 36, 542, 544, 546-547

end-of-life trajectories and symptoms, 47, 48

mortality rates, 34, 35, 536-537, 540-542, 551

pediatric age range defined, 535-536

site of death, 34, 61-62, 68, 547-548, 549, 551, 552-554, 555

Children’s Health Insurance Program, 412, 424, 427, 477-478

Children’s Hospital Boston, 68, 230, 423, 428

Children’s International Project on Palliative/Hospice Services, 429

Children’s Oncology Group, 67, 423

Children’s Program of All-Inclusive Coordinated Care for Children and Their Families, 422

Chronic obstructive pulmonary disease (COPD), 37, 70, 88, 133, 137, 170, 212-213, 476, 500, 508, 509

City of Hope National Medical Center, 232

Clinician-patient communication

in advance care planning, 2, 3, 6, 11-13, 18, 50, 117, 118, 128-129, 142, 146, 149-150, 152, 154, 155, 157-172, 190-191, 212, 213, 237, 345, 448

barriers to, 159-160

cancer care, 152, 158, 159, 161, 165, 171-172, 214, 237

and costs of care, 25, 290

decision aids, 170-172

elements of good communication, 351-352

emotional encounters with patients, 161-162

family and health care agent involvement, 164-166

goals, 158

importance of conversations, 28, 446-447

information preferences, 159

intensive care setting, 138, 165, 230, 428

nurses, 129, 162, 226, 231, 235

nursing home residents, 216, 224

nurturing patients’ hope, 162-163

palliative care, 64, 288, 290, 431

professional education and training, 225, 226, 229, 230, 231, 232 n.11, 233, 234, 235-237, 241, 250, 251-252, 428, 451

prognosis discussions, 92, 160-161, 164-165, 212, 213

and quality of care, 79, 190, 283

racial, ethnic, and cultural considerations, 149-150, 152, 154, 155, 522

recommendations, 12-13, 190-191

reimbursement issues, 452

and satisfaction with care, 158, 164, 167, 290

shared decision making and patient-centered care, 166-172

spirituality and religion, 163

understanding patient decision-making methods, 167-170

Coalition to Transform Advanced Care, 227

Cognitive impairment (see also Dementias)

and advance care planning, 119, 137, 145-146, 215-216

probability, 38

Coleman, Diane, 147

Colorado

Evercare managed care model, 286

pediatric palliative care program, 68, 427

POLST program, 123

transitional care model, 53

Communication (see Clinician-patient communication)

Community-based Care Transitions Program, 53

Community-based services (see Home- and community-based services)

Community Conversations on Compassionate Care, 122, 172-173, 354, 356, 358, 421

Community Living Assistance Services and Supports Act (CLASS), 315, 475

Community-State Partnerships to Improve End-of-Life Care, 33, 323

Community-Wide End-of-Life/Palliative Care Initiative, 358

Compassionate Friends, 354 n.4

CompassionNet, 68

Complex chronic conditions

age and, 36

children, 34, 546-547, 551-552, 554-559, 571

contributing factors, 34-35

coordination of care, 50-51

and costs of care, 36, 266

and delivery of care, 50

hospitalizations, 266, 554, 556

self-management, 156

site of death, 552, 555

VA Home Based Primary Care Program, 72

Concurrent care

ACA and, 319, 320, 412, 427, 475-476, 477

costs implications, 412, 477, 567-570

demonstration projects, 319, 412, 427, 475-476, 477

financing, 278, 297, 319, 427, 475-478

institutional long-term care and, 297

and longevity, 72

Medicare coverage, 154, 319, 412, 427, 475-476, 477

nursing home residents, 278

palliative care and, 7, 58, 73, 277, 287, 293, 295, 297-298, 321, 322

pediatric, 319, 427, 477-478, 533-534, 567, 569-570

private-sector initiatives, 321-322, 476

and quality of life, 72, 412

recommendations of professional societies, 73

satisfaction with, 322

Congestive heart failure, 46, 63, 70, 133, 170, 476, 491, 493, 508, 509, 526

Congressional Budget Office, 284 n.10, 323, 503

Consumer Assessments and Reports of End of Life (CARE) survey, 78, 80

Consumer’s Toolkit for Health Care Advance Planning, 123-124

Continuity of care

coordination of care and, 50-51

hospitals, 68

pediatric care, 68

primary care and, 49-50, 68

public testimony on, 448-451

racial and ethnic differences, 155-156

transitions between care settings and, 52

Conversation Project, 124, 125, 352-353, 354, 356-357, 360, 420

Coordinated-Transitional Care (C-TraC), 53-54

Coordination of care (see also Delivery of end-of-life care)

across programs, 4, 25

advance directive and, 134, 212, 303, 426

cancer care, 51, 65, 67, 68

communication and, 50, 55

continuity of care and, 50-51

and costs of care, 4, 25

disease management programs, 54, 186, 212, 304, 305, 306

by family, 14

importance of, 46, 50, 86

incentive policies and, 17, 275-302, 329-330

interdisciplinary team approach, 7, 10, 13, 58, 68, 71-72, 79, 101, 102, 103, 226, 244, 424, 429, 563-564, 571

long-term care, 304-305, 308, 470

measurement of, 51 n.2, 81

medical homes, 51-52, 82, 302, 303, 314, 469

Medicare and, 304, 305, 308, 315-316, 330

multiple chronic conditions and, 50-51

palliative care and, 63, 68, 71, 84, 322

primary care and, 49-51, 68

public testimony on, 448-451

and quality of care, 31, 76, 81, 82, 265, 303-306

and satisfaction with care, 76

scenario of lack of, 55, 56-57

transfer of patient information across settings, 10, 17, 50, 103, 181-185, 188, 331

and transitions between care settings, 49-52, 53, 54, 100

and utilization of acute care services, 9, 50-51, 86

Costs of end-of-life care (see also Financing and organization of end-of-life care)

advance care planning and, 12, 18, 139-141, 369, 510

age and, 494, 495, 499

cancer patients, 37, 140-141, 275, 290, 508, 510, 520

changes over time, 4, 25, 504

chronic conditions and functional limitations and, 22-23, 36, 37, 266, 491-494, 516-517

clinician-patient communication and, 25, 290

concurrent care, 567-570

coordination across programs and, 4, 16, 25

data limitations and gaps, 517-518

dementias and, 37, 270, 303, 328, 509-510, 517

demographic characteristics, 506-507

delivery of care and, 16, 25

distribution and trends, 488-489

emergency services and, 281-282, 569

epidemiology of chronic conditions and, 499-501

family caregivers and, 301

fiscal challenges, 267-271

fragmentation of care and, 4, 25

geographic variations, 22, 305-307, 458-459, 510-512

goals of care discussions and, 510

health characteristics and, 508-510

hospice care, 292-295, 519-522

hospitalization, 22, 266, 280-281, 512-513, 564, 565-567, 568, 569

identifying high-cost patients, 525

identifying target population for cost-saving

informal care, 37, 38

interventions, 523-525

life expectancy and, 35-36

long-term care, 273, 274, 296, 300-301, 458, 502

magnitude and proportion, 502-503

Medicaid, 16, 268, 271, 273, 291, 298, 300-301, 302, 303, 312, 459, 495, 497, 498, 499, 502, 522

Medicare, 139, 268, 276, 279-280, 283-284, 451, 504, 519-523

nursing home population, 37, 272, 273, 277, 296, 310, 312, 457, 465, 489, 490, 492, 493, 494, 495, 496, 497, 498, 499, 501-502, 509, 514, 515, 517, 522

palliative care, 74, 264, 274, 287-292, 327, 329, 519

patient characteristics associated with, 505-513

by payor, 498-499

percent of gross domestic product, 15-16, 267, 268, 283-284, 308

populations with highest costs, 489-499, 513

preferences of patients and, 2, 15, 21, 510

public attitudes about, 3, 18, 451-452

and quality of care, 15, 22, 275-302

race/ethnicity and, 494-497

reimbursement policies and, 4, 16, 25, 137, 269 n.6, 276, 279-280, 318, 451-452, 473, 504-505, 508

and survival, 22

trajectories of illness and, 22, 513-517

utilization of services and, 456-458, 512-513, 525-526

variation among decedents, 504-505

Critical care (see Intensive care/critical care)

Critical Care End-of-Life Peer Workgroup, 77, 229, 231-232, 234, 323

Cruzan, Nancy Beth, 364

D

Dana-Farber Cancer Institute, 68

Data sources and methods, this study additional activities, 393-394 commissioned papers, 394 committee description, 391-392 literature review, 392 public meetings, 392-393, 395-405 written public testimony, 443-454

Death and dying

Last Acts campaign, 33, 353, 361

perceptions of, 445-446

public venues for discussions of, 352-355

site of, 33-34, 54, 81, 119, 468

trajectories and symptoms, 22, 30-31, 46-48

Death Cafe, 352, 354, 420

Death over Dinner, 352, 354, 420

“Death panels” controversy, 12, 120, 132, 366-370

DeathWise, 352, 354, 420

Decision making by patients and families

aids, 170-172

biases and heuristics, 167-168

choice architecture, 168-169, 188

default choices on advance directives, 169-170

and patient-centered care, 166-172

research needs, 188

shared, 1, 4, 17, 80, 99, 118, 136, 138, 166-172, 173, 174, 182, 188, 320 n.32, 326, 331, 351

stages of change theory and, 188

video materials and, 171-172

Delivery of end-of-life care (see also Continuity of care; Coordination of care; Transitions between care settings; specific services)

ambulatory care environment, 282-285

for children, 67-69

communication and, 55-58

and costs of care, 16, 25

current situation, 46-55

family caregivers, 92-97, 102

hospice care, 46, 48-49, 50, 54, 56, 59, 60-62, 63, 65, 100, 101

hospital environment, 280-282

interdisciplinary team approach, 7, 10, 13, 58, 64, 67, 68, 71-72, 79, 86, 95, 101, 102, 103, 226, 234, 244, 245, 249, 424, 429, 563-564, 571

managed care environment, 285-287

multiple chronic conditions and, 50

in nonhospital settings, 69-70

palliative care, 7, 51-52, 55, 58-74, 97, 103, 287-292

preferences of family and patients and, 55, 56

primary care, 49-52, 70

prognosis problem, 47, 87-92, 101-102

providers, 48-49

public testimony on, 448-451

quality of care, 55-57, 74-87, 275-302

race/ethnicity and, 49, 60

recommendations, 10, 103-104

research needs and funding, 32, 97-100

strategy for changing, 40

trajectory and symptom challenges 46-48, 49

transitions between care settings, 49-52, 55, 100

unwanted care, 55-58

Dementias

advance care planning, 137, 171, 215-216

Alzheimer’s disease, 36, 37, 38, 61, 165, 215, 295, 311, 444, 456, 509

challenges in end-of-life care, 49, 96, 266

chronic illness with, 48

costs of care, 37, 270, 303, 328, 509-510, 517

hospice care, 74, 81

hospitalizations, 54, 56-57, 298, 324, 328

managed care enrollees, 286, 412

nursing home residents, 54-55, 81, 249, 286, 303, 324, 328

palliative care, 54-55, 303

prognosis predictions, 88, 91

quality of care, 38, 49, 54-55, 56-57, 74, 79, 249, 286, 411, 412

racial and ethnic minorities, 49

training of caregivers, 249

trajectories and symptoms, 48

transitions for care, 54, 328

trends, 38, 144, 215

Depression, 35, 37, 45, 48, 54, 63, 65, 67, 71, 72, 73 n.12, 74, 96, 120, 136, 137 n.15, 138, 161, 162, 167, 213, 266, 284, 290, 311, 450, 499, 509

Direct care workers, 14, 248-249

Disease management programs, 54, 186, 212, 304, 305, 306

Do-not-hospitalize orders, 123, 152, 286

Do not resuscitate (DNR), 60, 121, 123, 136, 149, 152, 154-155, 174, 176, 184, 448

Dresser, Rebecca, 150

Dual eligibility, 271-272, 273, 278, 286, 287, 298, 302-303, 310, 315, 328, 386, 474-475, 522

Duchenne’s muscular dystrophy, 147

Durable power of attorney for health care, 118 n.1, 122, 124, 130, 145, 366 n.14, 386

E

Early Periodic Screening, Diagnosis, and Treatment, 477-478

Educate, Nurture, Advise Before Life Ends (ENABLE), 73

Education and training (see Patient, family, or caregiver education; Professional education and development in end-of-life care; Public education and engagement)

direct care workers, 14, 248-249

family caregivers, 2, 15, 53, 76, 97, 138, 245, 311, 330

Education in Palliative and End-of-life Care (EPEC) Program, 222, 229-230, 251, 415, 428

Emergency department services

and advance directives, 134, 179, 212, 426

availability of alternatives, 467, 493, 519, 520, 569

costs/expenditures, 281-282, 569

database, 537-538

deaths, 548, 559-560

end-of-life care challenges, 49, 52, 57, 94

palliative care providers, 243

pediatric care, 98, 282, 304, 432, 559-560, 569, 571

prevention, 309-310, 314, 321-322, 331, 526

quality of care, 281-282, 453, 560

reimbursement policies, 281-282, 296, 467

research needs, 432, 526-527, 571

utilization, 17, 52, 73, 74, 211, 264, 266, 267, 281-282, 290, 304, 314, 467, 519, 520

End-of-Life Nursing Education Consortium (ELNEC), 222, 231-232, 251, 415

Pediatric Palliative Care curriculum, 429

End of Life/Palliative Education Resource Center, 222, 416

End-of-life trajectories and symptoms, 22, 30-31, 46-48

End-stage renal disease (ESRD), 64, 88, 471, 472, 547, 559

Engage with Grace, 352, 354, 420

EpicCare, 184

ePrognosis, 92

Evidence-based care, 1, 4, 6, 12, 19, 22, 28, 31, 64, 77, 84, 98, 190, 305, 310, 316, 362, 370, 410, 419

Excellus BlueCross BlueShield, 68, 127, 175, 320 n.31, 358

Expenditures for care (see Costs of end-of-life care; Financing and organization of end-of-life care; specific payors)

F

FACE Intervention, 143 n.19

Faculty Scholars Program, 222, 416

Family (see also Caregivers, family)

advance care planning effects, 2, 11, 136, 137-139, 367

bereavement services/support, 28, 58, 68, 69, 72, 78-79, 96, 98, 165, 187, 233, 241, 242, 244, 321, 411, 422, 423, 424, 426, 428, 430, 431, 432, 453, 535, 552, 564, 571

clinician communication with, 164-166

defined, 28, 45-46

financial considerations, 145, 212

importance of, 45

participation in advance care planning, 18, 128, 143, 150, 152, 154, 164-166

social and support services, 68

Family and Medical Leave Act of 1993, 97, 452

Federation of State Medical Boards of the United States, Inc., 413

Financing and organization of end-of-life care (see also Accountable care organizations; Costs of end-of-life care; Health insurance coverage, private; Medicaid; Medicare; Reimbursement policies and methods)

ACA reforms, 4, 272, 314-321, 412

concurrent care, 475-478

Financial Alignment Initiative, 315-316

home- and community-based services, 315

hospice and home care, 319

impacts of, 455-456

incentive policies and coordination of care, 275-302, 329-330

integrated models, 466-467

long-term care, 16, 266, 268, 271, 274, 275, 278, 279, 287, 296-303, 306, 315-316, 320, 327-328, 475, 478-479, 498, 499

major programs, 271-275

palliative care, 33, 59, 61, 68, 98, 287-292, 329

payers, 459-460

private-sector initiatives, 321-322

and quality of care, 467-469

recommendations, 16-17, 330-331

reform impacts, 469-478

research needs, 326-328

social services integration, 309-314, 329

state policy reforms, 322-323

transparency and accountability, 324-326, 329

Five Wishes, 142, 356, 426

Florida

hospice care, 74

pediatric palliative care program, 68, 427, 554, 569

utilization and spending, 458, 569

Food and Drug Administration, 70 n.10, 230, 381

Footprints Model, 143 n.19

Foundation for Advanced Education in the Sciences, 232-233

Functional limitations and disabilities aging and, 37

and costs of care, 22-23, 36, 37, 266, 491-494, 516-517

disability rates, 37-38

and end-of-life trajectory, 47

Futile care, 233, 288, 364-365, 359

G

George Washington University, 227

Geriatric care, 10, 50, 52, 227 n.5, 232, 282

Geriatric Resources for Assessment and Care of Elders (GRACE), 313 n.28

Goodman, Ellen, 124

Gundersen Health System, 141

H

Hammes, Bernard, 181

Harvard Medical School Program in Palliative Care Education and Practice, 228

Health and Retirement Study (HRS), 38, 47, 89-90, 91-92, 119, 144 n.20, 270 n.7, 501, 502, 503, 504, 506, 508, 509, 513, 514, 519

Health care agents, 11, 18, 118, 122, 124, 126, 129-132, 134, 135, 136, 137-139, 142, 145, 147, 150, 157, 158, 160, 164-166, 167, 173, 174, 175, 176, 179, 183, 184, 185, 186, 187, 189, 211, 212, 215, 216, 349, 385, 386, 387, 389

Health Care Financing Administration, 33

Health Information Technology for Economic and Clinical Health (HITECH) Act, 184, 387

Health Information Technology Policy Committee, 184-185

Health insurance coverage, private (see also Medicaid; Medicare; Reimbursement policies and methods)

ACA and, 419, 460

concurrent care, 321-322, 476

essential health benefits, 460

programs and expenditures, 274

Health Insurance Portability and Accountability Act (HIPAA), 172, 247

Health literacy, 156-157

Health records

advance directive incorporation, 121, 180, 181

electronic, 17, 181-185, 188, 331

Health Resources and Services Administration (HRSA), 81-82, 408

Healthcare Cost and Utilization Project, 537-538

Healthcare Effectiveness Data and Information Set (HEDIS), 468

Heart Bypass Center Demonstration, 471

Heart disease/failure, 7, 30, 31, 34, 36, 37, 38, 48, 54, 64, 70, 456, 500

Henry J. Kaiser Family Foundation, 367

Hispanics

advance care planning, 60, 151, 154, 188

costs of care, 497, 506, 507, 569

direct care workers, 249

hospice use, 153, 569

insurance payor, 495, 507

life expectancy, 34

literacy levels, 156

mortality data, 536, 537

preferences for end-of-life care, 60, 149, 154, 348

site of death, 153, 553-554

treatment differences, 49

utilization of services, 506, 513

HIV/AIDS, 61, 62, 97, 142, 143, 356 n.5, 444, 476

Hollywood Health and Society, 353

Home (see In-home care)

site of death, 33, 34, 63, 73

Home- and community-based services, 94, 298, 299-302, 312-313, 315, 316

Home health

agencies, 49, 50, 61, 70, 71 n.11, 74, 98, 246, 249, 306, 422, 424, 432, 461-462

aides, 14, 248, 249, 251, 273, 296, 297, 321, 386, 388

hospices, 7, 63, 65, 75, 125, 294

services, 75, 273, 299, 308, 323, 427, 452, 456, 457, 458, 459-460, 461, 462, 523, 525

Homeless people, 146-147, 300

Honoring Choices, 354, 356, 357, 421

Hopkins Competency Assessment Test, 145 n.22

Hospice and Palliative Nurses Association, 78, 84, 223, 242-243

Hospice and Palliative Nurses Foundation, 242-243, 410

Hospice care (see also Palliative care)

access to, 10, 30, 62, 103

accountable care organizations and, 292, 472-473, 479

advance care planning and, 212

cancer patients, 30, 61, 62, 65, 295, 393, 465, 476, 520

certification, 14, 48, 59 n.6, 100

costs, 292-295, 519-522

definitions, 18, 27, 60-61

delivery of, 46, 48-49, 50, 54, 56, 59, 60-62, 63, 65, 100, 101

dementia patients, 54, 56, 74, 81

growth of, 8, 20, 60-62, 100, 102-103

hospital programs and referrals, 61, 63

in-home care, 7, 63, 65, 75, 125, 294

interdisciplinary team approach, 101, 102, 103

life expectancy and eligibility, 8, 30, 294, 321, 387, 388, 412, 426

and longevity/survival, 30, 62, 73 n.12, 74, 101

Medicaid and, 62, 244, 298, 319, 426-428, 460, 463, 465, 477-478, 569

Medicare benefit, 30, 59, 62, 83, 88, 96, 102, 154, 238, 247, 273, 274, 277, 285, 292-295, 388, 411, 412, 457, 459, 460, 463-466, 470, 475-476, 477, 478, 480, 522

in nursing homes, 61, 65, 74, 81, 152-153, 278, 295, 298, 462, 465-466, 479

open-access, 522-523

pediatric services, 61-62, 98

in prisons, 62

professional education and development, 13, 14, 48, 221, 222, 224, 226-229, 232, 233, 237-247, 249-251

professional/provider support for, 32-33

prognosis and, 88, 90, 92, 102

public perceptions of, 50

and quality of care, 8, 50, 62, 65, 74, 77

quality-of-care measures and reporting, 7, 77-78, 79, 81, 83-85, 86, 411

and quality of life, 30, 63, 65

race/ethnicity and, 60, 61-62, 150, 153

recommendations, 10

referrals to, 8, 50, 54, 55, 60, 70, 86

reimbursement policies, 30, 59, 62, 83, 88, 96, 102, 154, 238, 247, 273, 274, 277, 285, 292-295, 319, 388, 408, 411, 412, 457, 459, 460, 462, 463-466, 470, 475-476, 477, 478, 480, 522

research needs, 97

satisfaction with care, 62, 74, 75, 80

and site of death, 33-34

specialty/specialists, 2, 7, 10, 13, 14, 20, 71

staffing, 10, 62

treatment approach, 2, 7, 8, 9, 18, 30, 60-61, 62, 63, 86

utilization of, 63

volunteers, 62

Hospice Experience of Care Survey, 83-84, 411

Hospice Item Set, 83, 411

Hospice Medical Director Certification Board, 240

Hospice Quality Reporting Program, 83, 411

Hospital at Home^® project, 70, 523

Hospital environment (see Emergency department services; Hospitals/hospitalization)

Hospital Readmissions Reductions Program, 53

Hospitals/hospitalization (see also Emergency department services; Intensive care/critical care)

accountability, 84

accreditation, 84

admissions, 17, 33, 74, 90

children’s hospitals, 64, 68, 564-565, 569

complex chronic conditions and, 266, 554, 556

concurrent care, 72

continuity of care, 68

costs of care, 22, 266, 280-281, 512-513, 564, 565-567, 568, 569

deaths/dying in, 33, 69, 78, 81, 94

delivery environment, 280-282

hospice programs and referrals, 61, 63

lengths of stay, 73, 557, 564, 567

Medicare policies and, 52-53, 277, 280-281, 512-513, 520

nursing home residents, 52, 54, 281, 286, 297, 298, 307, 324, 462, 470, 501, 502

palliative care services, 7, 8, 15, 27, 59, 60, 61, 63-64, 65, 66, 68, 69, 71-72, 84, 85, 98, 100, 562-564

patient education interventions, 53, 73

pediatric care, 68, 98, 537-539, 554, 556-559, 562-567, 568, 569

prognosis and predicted probability of death, 90, 91, 92, 565-567, 568

quality of care, 57, 78, 81, 84, 85, 280-281

readmissions, 52, 53-54, 70, 304, 306, 314, 319, 471, 473, 520, 523, 547

reimbursement policies, 53, 277, 280-281, 319, 471

satisfaction with care, 56-57, 73, 74, 75

transitions between care settings, 52-53, 54, 57, 100

unwanted, uncoordinated care, 56-57, 266

Huntington’s disease, 215-216

I

Implantable cardioverter defibrillator (ICD) deactivation, 78, 79, 80

In-home care (see also Caregivers, family)

communications technology and, 70

costs, 37, 38

hospice, 7, 63, 65, 75, 125, 294

Medicare and, 319, 523

nurses, 70, 273, 292, 294, 298 n.18, 321, 539, 552, 553, 571

palliative care, 70, 72, 73, 74, 290, 294, 320, 321-322, 328

preference for, 94

quality, 38, 65, 70

reimbursement policies, 97

satisfaction with, 70

Informed Medical Decisions Foundation, 354 n.4

Initiative for Pediatric Palliative Care, 429

Institute for Healthcare Improvement, 420

Instrumental activities of daily living (IADLs), 93, 248, 491-492

Intensive care/critical care

admissions, 51

advance directives, 126, 151, 214, 216

appropriateness of care, 130, 280-281, 288, 557

clinician communication, 138, 165, 230, 428

deaths, 68, 81, 520, 557

dementia patients, 49

family conferences, 164, 213, 236

financial issues, 140, 267, 280-281, 288, 289, 291, 329-330, 364-365, 458, 506, 517

futile care, 288, 364

impacts on family, 138

nurses/nursing, 232

palliative/hospice care and, 63, 66, 73, 74, 77, 187, 279, 289, 291, 329, 457, 463, 473, 519, 520

pediatric and neonatal, 68, 89, 230, 428, 429, 542, 557

and preferences of patients, 94

primary care and, 51

professional education and training, 232

and prognosis/survival status, 89, 90, 92, 119, 165, 512

quality of care measures, 77, 79

race/ethnicity and, 49, 151, 506

transitions between services and, 298

utilization, 33, 214, 267, 279, 329-330, 458, 512, 517, 519, 520, 557

Interdisciplinary team approach, 71-72, 101

International Classification of Diseases (ICD) codes, 536, 537, 538, 546

Interprofessional collaboration, 226, 228, 229, 230, 234, 252, 428

J

John A. Hartford Foundation, 227 n.5

Johns Hopkins University, 70, 523

Joint Commission, 84, 409

Josiah Macy Jr. Foundation, 234

K

Kids’ Inpatient Dataset (KID), 537-538, 539

Kubler-Ross, Elisabeth, 60

L

Last Acts campaign, 33, 353, 361

Liaison Committee on Medical Education, 226, 231

Life Cycle Model of Advance Care Planning

for children, 187

in final year of expected life, 187

at initial diagnosis, 186

milestone specific, 185

primary care setting, 186

situation-specific, 186

at worsening health, 186-187

Life expectancy (see also Prognosis)

and assisted suicide, 363

at birth, 30, 34, 35-36, 308

and hospice eligibility, 8, 30, 294, 321, 387, 388, 412, 426

palliative care and, 62, 167, 560

patient preferences for discussing, 152

and pediatric palliative care eligibility, 424, 426

predicting, 89, 91, 160

race/ethnicity and, 34

LIVESTRONG Foundation, 414

Living Well at the End of Life poll, 347

Living wills, 117, 120, 122, 124, 132, 133, 136 n.13, 147, 175, 181, 184, 366 n.14, 369, 385, 387

Long-term care (see also Nursing home residents)

acute care, 27, 48, 59-60, 306, 388-389, 458

advance care planning, 164, 172, 174, 179, 218

and concurrent care, 297

coordination of services, 304-305, 308, 470

costs of care, 273, 274, 296, 300-301, 458, 502

coverage of services, 459-460

defined, 387-388

disability rates and, 37-38

dual-eligible individuals, 273, 278, 302-303, 457, 462, 522

environment, 296-303

family needs, 312-313

financing, 16, 266, 268, 271, 274, 275, 278, 279, 287, 296-303, 306, 315-316, 320, 327-328, 475, 478-479, 498, 499

home- and community-based, 94, 298, 299-302, 312-313, 315, 316

in hospice, 295-296, 462

institutional, 297-298, 310

insurance, 274, 315

interdisciplinary care teams, 102

Medicare and, 275, 287, 297-298, 459-460

need for, 37

palliative care, 27, 59, 69, 389

professional education and training, 229-230, 233, 247

quality of care, 247, 278

social services, 329

spiritual care, 247

Longevity/survival

advance care planning and, 136

cancer patients, 62, 69, 215

concurrent and, 72

cost of care and, 22

hospice care and, 30, 62, 73 n.12, 74, 101

palliative care and, 62, 68, 69, 72-73, 98, 101, 215, 322 n.33, 560

M

Managed care

and advance care planning, 298 n.18

for dual-eligible individuals, 286, 412

Massachusetts

hospice care, 74

Pediatric Palliative Care Network program, 68, 424, 425

Massachusetts General Hospital, 72

MD Anderson Cancer Center

Supportive and Palliative Care Service, 65, 67

Texas Community Bus Rounds program, 383

Meals and nutrition services, 287, 309, 310, 312-313, 330

Measuring What Matters initiative, 410

Medicaid (see also Centers for Medicare & Medicaid Services)

ACA and, 16, 268, 275, 315, 319, 412, 427, 469, 477-478

and advance directives and advance care planning, 121, 323, 464

age-related costs, 499

Cash & Counseling program, 97, 313

and concurrent care, 278, 319, 427, 477-478

costs and expenditures, 16, 268, 271, 273, 291, 298, 300-301, 302, 303, 312, 459, 495, 497, 498, 499, 502, 522

data for health services research, 525, 539

demonstration and waiver authority, 308

and direct care workers, 249

disease management programs, 305-306

dual eligibility, 271-272, 273, 278, 286, 287, 298, 302-303, 310, 315, 328, 386, 462, 474-475, 522

electronic health record incentives, 184

enrollees, 271-272, 273, 299, 459

financing, 269, 271, 315-316, 330, 412, 463-464, 467, 474, 522

health insurance coverage, 273, 275, 412, 426-427, 459-460, 477-478

Home and Community Based Services program, 298, 299-302, 315

home health, 279, 320, 459-460

hospice care, 62, 244, 298, 319, 426-428, 460, 463, 465, 477-478, 569

impacts of policies, 278-279, 298, 569

long-term-care/nursing home assistance, 10, 16, 54, 171, 264, 268, 271, 272, 273, 275, 277, 278-279, 285, 295, 296, 297-298, 302, 306, 307, 312, 324, 388, 448, 456, 457, 458, 459-460, 461, 462-463, 465, 470, 479, 498, 499, 501, 502, 503, 525

managed care, 285-286, 303, 323, 326

and mental health services, 284-285

nursing home care, 16, 273, 275, 277, 278-279, 285, 457, 462

PACE program, 287, 302, 522

and palliative care, 68, 291, 295, 301-302, 427-428, 463, 519

racial difference in costs/payments, 495, 497

reforms needed and proposed, 266-267, 270, 320-321, 426-428, 469, 479

reimbursement policies, 263, 264, 278-279, 282, 283, 284-285, 298, 316, 323, 329, 330, 464, 465, 474, 479

social services coverage, 309, 312

spending down for eligibility, 271-272, 296

state policies, 323, 424, 427, 459-460

tax base, 269

transparency and accountability, 17, 324

Medical Expenditure Panel Survey data, 489, 490, 492, 493, 494, 495, 496, 497, 499, 501, 503, 514, 515

Medical homes, 51-52, 82, 302, 303, 314, 469

Medical orders, defined, 122

Medical Orders for Life-Sustaining Treatment (MOLST), 17, 123, 175, 177, 179, 182, 183, 331, 358

Medical records (see Health records)

Medicare (see also Centers for Medicare & Medicaid Services)

ACA-authorized changes, 314, 315-316, 319, 469, 478

accountable care organizations, 317, 318-319, 472

and advance care planning, 121, 124, 139, 464, 510

ancillary services, 284

bundled payment model, 314, 316, 327-328, 455, 458-459, 469-475, 479

burden of illness in eligible populations, 16, 33, 36, 37, 52-53, 139, 265, 503, 504-505

Care Choices Model, 412, 476

community-based services, 318

concurrent care coverage, 154, 319, 412, 427, 475-476, 477

and coordination and continuity of care, 304, 305, 308, 315-316, 330

and costs of care, 139, 268, 276, 279-280, 283-284, 451, 504, 519-523

deaths of covered population, 275

demographic characteristics related to spending, 506-507, 508

demonstration programs, 469-478

dual eligibility, 271-272, 273, 278, 285-286, 287, 298, 302-303, 310, 315, 328, 386, 462, 474-475, 522

economic impacts, 269-270

and electronic health records, 184

enrollment/eligible population, 16, 36, 271, 459-460, 503

expenditures, 16, 23, 36, 37, 139, 264, 267, 268, 270-273, 275, 280-282, 285, 289, 303, 304, 306-307, 457, 458-459, 497, 498, 499, 502-503, 504-512

family caregiver benefits, 296-297

fee-for-service policy, 16, 33, 36, 37, 52-53, 139, 265, 269, 276, 277, 278, 279-280, 282, 283, 285, 316, 317, 318, 322, 327, 328-329, 386, 388, 409, 461, 466, 467, 469, 470, 472, 473, 503, 504-505, 523

financial incentives, 16, 184, 363

funding/tax base, 269, 271

geographic variation in spending, 306-307, 510-512

health characteristics related to spending, 508-510, 512, 516, 517, 525

home care, 319, 523

hospice benefit, 30, 59, 62, 83, 88, 96, 102, 154, 238, 247, 273, 274, 277, 285, 292-295, 319, 388, 408, 411, 412, 457, 459, 460, 462, 463-466, 470, 475-476, 477, 478, 480, 522

and hospitalization, 52-53, 277, 280-281, 512-513, 520

limitations of payment approaches, 460-466

long-term care, 275, 287, 297-298, 459-460

managed care, 466-457 (see also Medicare Advantage)

mental health treatment, 284-285

out-of-pocket expenditures by beneficiaries, 458

PACE integrated model, 287, 467

palliative care financing, 412, 463-464, 476

physician services, 282-284, 464

and quality of care, 286-287, 293-294, 307, 324, 326

quality reporting requirements, 7, 77-78, 79, 81, 83-85, 86, 411

reform contexts, 265, 266-267, 329-330, 469-478

SEER-Medicare database, 51

Shared Savings Program, 315, 317, 318, 468, 472, 473

skilled nursing benefit, 272, 278, 297, 298, 306, 307, 324, 388, 457, 451, 457, 458, 459, 461, 462, 470, 479, 498, 499, 501, 502

sustainable growth rate, 283-284

traditional Medicare, 272-273, 388-389, 459, 461-463

training requirements for direct care workers, 349

transitions among services, 409

transparency and accountability, 17

and utilization of services, 16, 279, 280-281, 306-307, 408, 456-459, 501, 512-513

Medicare Advantage, 50-51, 53, 276, 278, 285-286, 309, 320, 321, 322, 326, 327, 388, 459, 466, 502

Medicare-Medicaid Coordination Office, 272, 315, 412

Medicare Modernization Act of 2003, 388

Medicare Payment Advisory Commission (MedPAC), 272, 286, 295, 320, 413, 465, 466, 479

Medicare Prescription Drug Improvement and Modernization Act of 2003 (MMA), 463-464, 466

Mental health services, 284-285

Methodist Hospital System, Houston, 247

Minnesota

Honoring Choices series, 354, 356-357, 421

hospice services, 74

nursing home deaths, 33

Rural Palliative Care Initiative, 408

Mortality data (see also Death and dying)

age and causes of death, 31, 34

cancer, 31, 34, 35, 36, 214, 456, 546

pediatric, 31, 34, 536-537, 540-542, 551

Murray, Kenneth, 24

N

National Alliance for Caregiving, 96, 354 n.4

National Assessment of Adult Literacy, 155, 156

National Association for the Advancement of Colored People (NAACP), 33

National Association of Social Workers, 78, 243-244, 417

National Board for Certification of Hospice and Palliative Nurses, 241, 417

National Cancer Institute, 67, 158, 232, 423

National Center for Health Services Research (NCHSR), 299

National Center for Health Statistics, 367, 430, 536

National Commission on Fiscal Responsibility and Reform, 267

National Committee for Quality Assurance (NCQA), 82, 84-85

National Comprehensive Cancer Network, 73, 214

National Consensus Project for Quality Palliative Care (NCP), 9, 78, 79, 84, 85, 87, 214, 246, 410

National Council on Aging, 127

National Data Set, 430

National Family Caregiver Support Program, 97, 310

National Framework and Preferred Practices for Palliative and Hospice Care Quality, 61, 172-173, 185, 410, 425-426

National Healthcare Decisions Day, 124, 354, 356-357, 421

National Hospice and Palliative Care Organization, 67, 78, 84-85, 153, 175, 223, 352, 411, 421, 422, 424, 425, 428, 430, 521

National Institute of Nursing Research, 33, 39, 97, 418, 419, 431

National Institutes of Health (NIH), 33, 39, 98, 232-233, 418, 430, 535-536

National Long-Term Care Survey, 37

National Palliative Care Research Center, 78, 100, 419, 431

National Rural Health Association Technical Assistance Project, 408, 421, 425

National Quality Forum (NQF), 61, 77-78, 79, 80, 81, 83, 84-85, 98, 172, 187, 410, 411, 423, 425-426, 468-469

Nationwide Emergency Department Sample (NEDS), 537-538, 539, 559

New Mexico, 70, 363

New York State

Community Conversations on Compassionate Care, 122, 358

CompassionNet, 68

MOLST program, 123, 175, 177, 178, 179, 182, 183, 358

PACE program, 177

pediatric palliative care, 68, 427

site of death, 553

utilization and costs, 152-153, 291, 519, 553

North Carolina, 68, 123, 421, 427

North Dakota, 68, 427, 458

Northeast Ohio Medical University, 227

Nurses/nursing

advance care planning role, 185, 186, 389, 448

case/care managers, 53, 294, 304, 322, 476

certifications, 14, 15, 27, 48-49, 59, 242, 252, 417, 429

communication with patients, 129, 162, 226, 231, 235

delivery of care, 42, 50, 53, 70

discharge advocate, 53

education of patients and caregivers, 53, 73

faculty development, 222, 229-230, 231-232, 415, 416

home visits, 70, 273, 292, 294, 298 n.18, 321, 539, 552, 553, 571

intensive care, 232

interprofessional collaboration, 226, 228, 229, 230, 234, 252, 428

medical orders, 122, 175, 389

palliative and hospice care, 8, 10, 14, 27, 52, 59, 71, 85, 100, 101, 103, 222, 223, 226, 231, 232, 237-238, 240-243, 251, 252, 294, 321, 322, 385, 389, 409, 417, 423

primary care, 50, 286

professional education and development, 13, 14, 15, 221, 222, 223, 225, 226, 228, 229-230, 231-232, 237-238, 240-243, 251, 415, 416, 423, 428

scope-of-practice laws, 323

specialties, 240-243, 251, 389, 417, 429

spiritual care, 246

staffing of hospital-based pediatric palliative care programs, 563-564

transitional care, 52, 53, 54

Nursing Home Compare, 468, 480

Nursing home residents

advance care planning and directives, 126, 129, 132, 151, 152, 171, 176, 177, 181, 182, 188, 216, 241, 286, 448, 468

alternative care for, 299, 301, 302, 303, 310, 311, 312, 467, 522

clinician communication with, 216, 224

concurrent care, 278

costs of care, 37, 272, 273, 277, 296, 310, 312, 457, 465, 489, 490, 492, 493, 494, 495, 496, 497, 498, 499, 501-502, 509, 514, 515, 517, 522

decision-making capacity, 119, 137, 189

dementias/cognitive impairment in, 54, 81, 216, 286, 295, 324, 328, 509

hospice care, 61, 65, 74, 81, 152-153, 278, 295, 298, 462, 465-466, 479

hospitalizations, 52, 54, 281, 286, 297, 298, 307, 324, 462, 470, 501, 502

language barriers, 60

long-term care insurance, 274, 498, 499

managed care for dually eligible individuals, 286, 412

Medicaid policies and payments, 16, 54, 273, 275, 277, 278-279, 285, 312, 324, 457, 462, 470, 498, 499

Medicare policies and payments, 272, 278, 297, 298, 306, 307, 324, 388, 451, 457, 458, 459, 461, 462, 470, 479, 498, 499, 501, 502

palliative care, 7, 27, 55, 58, 59-60, 66, 69-70, 72, 102, 243, 288, 479

preferences for treatment, 16, 176, 177, 216

prognosis, 90, 91

racial, ethnic, and cultural differences, 152-153, 496, 497

quality of care, 54-55, 74, 81, 247, 277, 278, 286, 324, 326, 468, 480, 526

research needs, 328, 526

satisfaction with care, 74, 75

shortage of care for, 37, 328

site of death, 33, 54, 81, 119, 468

skilled nursing facilities, 10, 16, 171, 272, 277, 278, 297-298, 306, 307, 388, 448, 456, 457, 458, 459, 461, 462-463, 465, 479, 501, 502, 503, 525

social services for, 329

spiritual care, 247

standards of care, 54, 409

state regulation and oversight of facilities, 323

training of caregivers, 69-70, 248-249, 311

transitions to and from hospitals, 52, 54, 277, 281, 286, 297, 298, 328, 449

utilization of care, 306, 307, 456, 501

O

Office of the Assistant Secretary for Planning and Evaluation (ASPE), 299

Older Americans Act, 97, 275, 279, 309, 310, 312, 366 n.14

Open Society Institute, 222

Oregon

physician-assisted suicide, 349, 354, 363, 421

POLST program, 121, 123, 178, 217-219

Organisation for Economic Co-operation and Development (OECD), 308

P

Palliative care

access to, 4, 10, 50, 64, 86, 102, 103, 320-321

accountable care organizations and, 292, 472-473, 479

advance care planning, 60, 66, 137, 143, 155, 160-161, 169, 172-173, 175, 215 n.13

approach and components, 8, 9, 55, 58-60, 63, 65-67, 68, 85, 86, 560

basic, 7 n.2, 14, 20, 27, 52, 59, 70, 221, 224, 225-226, 229, 233, 235, 238, 251, 252, 385, 416

biopsychosocial model of care, 62-63

cancer patients, 7, 62, 65, 67, 68, 69, 70, 72, 73, 77, 171, 215, 228, 290, 294, 414, 423, 519, 546, 560

certification, 14, 48, 84, 100, 221, 228-229, 238-240, 241, 242, 243, 247-248, 250-251, 418

chaplains, 8, 10, 67, 247-248, 418

clinical competency domains, 225

communication skills and, 64, 226, 233, 235-237, 288, 290, 431

community-based, 70, 282, 292, 301-302

conceptual models of, 560-561

concurrent care, 7, 58, 73, 277, 287, 293, 295, 297-298, 321, 322

consultation and counseling on, 60, 61, 64, 66, 137, 143, 155, 160-161, 164, 167, 170, 172, 187

continuity of care, 68

coordination across settings, 63, 68, 71, 84, 322

core tasks, 561-562

cost savings and expenditures, 74, 264, 274, 287-292, 327, 329, 519

definitions, 27, 59, 67, 86, 389

delivery of, 7, 51-52, 55, 58-74, 97, 103, 287-292

demand for, 4, 25, 62-65, 70

dual eligibility and, 303

in emergency rooms, 243

evidence for effectiveness, 62, 72-74, 101

family support and role in, 58, 64, 67, 68, 69, 86, 95, 96, 245, 249

financing and policy, 33, 59, 61, 68, 98, 287-292, 329

gaps in knowledge, 8, 570-571

geriatric care and, 52

growth of specialty, 8, 60, 62-65, 100, 102-103, 221, 250

guidelines, 9, 67, 73, 78, 84, 87

home-based, 70, 72, 73, 74, 290, 294, 320, 321-322, 328

and hospice, 2, 7, 10, 18, 58, 59, 60-62, 70

hospital-based, 7, 8, 15, 27, 59, 60, 61, 63-64, 65, 66, 68, 69, 71-72, 84, 85, 98, 100, 290, 291, 292, 562-564

and intensive care, 63, 66, 73, 74, 77, 187, 279, 289, 291, 329, 457, 463, 473, 519, 520

interdisciplinary team approach, 7, 10, 13, 58, 64, 67, 68, 71-72, 79, 86, 95, 101, 102, 103, 226, 234, 244, 245, 249, 424, 429, 563-564, 571

long-term care settings, 27, 59, 69, 389

and longevity/survival, 62, 68, 69, 72-73, 98, 101, 215, 322 n.33, 560

Medicaid and, 68, 291, 295, 301-302, 427-428, 463, 519

medical homes, 51-52

Medicare and, 412, 463-464, 476

in nonhospital settings, 7, 51-52, 59, 60, 69-70, 289-292

nurses/nursing, 8, 10, 14, 27, 52, 59, 71, 85, 100, 101, 103, 222, 223, 226, 231, 232, 237-238, 240-243, 251, 252, 294, 321, 322, 385, 389, 409, 417, 423

in nursing homes, 7, 27, 55, 58, 59-60, 66, 69-70, 72, 102, 243, 288, 479

palliative care, 74, 264, 274, 287-292, 327, 329, 519

pediatric, 67-69, 71 n.11, 98, 223-224, 232, 235-236, 292, 429, 535, 542-543, 545-546, 560-564, 570-571

performance measures, 84

pharmacists, 14, 59, 245-246

physician specialists, 238-240

preferences for, 77, 169

professional education and development, 13, 14, 48, 221, 222, 224, 226-229, 232, 233, 237-247, 249-251

prognosis and, 89-90, 91, 92, 233

public awareness and engagement, 18, 347, 348-349, 351, 353, 358, 364, 368

quality of care, 7, 8, 72, 74, 76-87, 96, 211, 264, 325-326

and quality of life and mood, 1-2, 7, 30, 45, 46, 58, 59, 62, 65, 69, 72-73, 74, 98, 101, 233, 290

race/ethnicity and, 60, 240

recommendations, 10, 14-15, 103, 252-253

rehabilitation therapists, 14, 247

reimbursement policies, 283, 285, 287-292, 294, 301-302, 320, 328

research needs and funding, 97, 98-99, 100, 228

satisfaction with care, 62, 64, 69, 70, 75, 290, 322

screening/assessment, 7-8, 65-68, 71, 77, 89, 92, 101

shortage of specialists, 224, 251

social services integration, 313-314, 330

social workers, 8, 10, 14, 15, 59, 222, 243-244

specialty/specialists, 2, 7, 13, 14, 15, 20, 27, 32-33, 48, 50, 52, 59, 61, 71, 74, 86, 100, 222, 224, 228, 233, 238-240, 241, 242-243, 246, 247-248, 250, 251, 252-253, 289, 389, 415, 417, 418, 429, 533

spiritual care, 67, 163, 246-247

staffing, 59, 563-564

support for, 62-64, 65, 223

timeliness of referral, 7, 80, 81, 101

transparency and accountability, 74, 76, 84

and utilization of hospital/emergency services, 69, 73, 74, 281, 290, 329

VA benefit, 61, 72, 274

Palliative Care Leadership Centers, 234-235

Palliative Care Research Cooperative Group, 100, 419

Palliative Prognostic (PaP) score, 89-90, 91

Parkinson’s disease, 37, 88, 295, 444

Partners Health System, 183

Patient, family, or caregiver education, 53, 73, 76, 184, 185, 305

Patient Aligned Care Team (PACT), 53

Patient-centered, family-oriented care (see also Delivery of end-of-life care)

core values, 69

decision making by patients and families and, 166-172

defined, 28, 31, 45

diversity of population and, 69

high-quality characteristics, 82-83

medical homes, 51-52, 82, 302, 303, 314, 469

primary care and, 68

Patient-Centered Outcomes Research Institute (PCORI), 98-99, 419

Patient Protection and Affordable Care Act (ACA), 25

accountable care organizations, 279-280, 310, 317-319

and advance care planning, 12, 120, 132, 366-370

bundled payment approaches, 316, 327-328, 469-475

and concurrent care, 319, 320, 412, 427, 475-476, 477

cost containment, 264, 265, 314, 315-316

“death panels” controversy, 12, 120, 366-370

and delivery of end-of-life care, 4, 97

and electronic medical records, 184

Financial Alignment Initiative, 315-316

financial and organizational changes under, 4, 272, 314-321, 412

gaps in, 319-321

home- and community-based services, 302-303, 315, 319

hospice care, 83, 295, 319, 320, 411, 412, 413, 469, 478, 480

insurance coverage, 419, 460

long-term care, 315, 320, 475

Medicaid expansion, 16, 268, 275, 315, 319, 412, 427, 469, 477-478

Medicare changes, 314, 315-316, 319, 469, 478

Medicare-Medicaid coordination, 412

palliative care services, 412

Patient-Centered Outcomes Research Institute, 98-99, 419

pay-for-performance, 319

proposed changes, 320-321

quality of care, 264, 265, 314, 327-328, 469

and research funding, 98-99, 419

training requirements for direct care workers, 249

transitions between care settings, 97

and transparency and accountability, 324, 329

Patient Self-Determination Act, 121

Pay-for-performance (P4P), 319, 474, 480

Payment systems (see Health insurance coverage, private; Medicaid; Medicare; Reimbursement policies and methods)

PEACE (Prepare, Embrace, Attend, Communicate, Empower) Project, 79, 84-85, 410

Pediatric Early Care program, 423

Pediatric end-of-life care (see also Children)

advance care planning, 68, 134, 136, 141-144, 146, 173, 184, 187, 188, 425-426, 429, 432

assessment scales, 67-68

clinical data, 538-539

complex chronic conditions, 34, 546-547, 551-552, 554-559

concurrent care, 319, 427, 477-478, 533-534, 567, 569-570

costs of care, 564-570

data sources and needs, 536-539

delivery of care, 67-69

emergency room visits, 98, 282, 304, 432, 559-560, 569, 571

gaps in knowledge, 570-571

geographic variations, 553-554, 555

guidelines, 67

hospice care, 61-62, 98

hospitalization, 68, 98, 537-539, 554, 556-559, 562-567, 568, 569

illness trajectories and clinical experience, 548, 550

intensity and invasiveness, 557-559

intensive care, 68, 89, 230, 428, 429, 542, 557

and longevity/survival, 68

multiple complex chronic conditions, 34, 547

pain and symptoms, 560

palliative care, 67-69, 71 n.11, 98, 429, 535, 542-543, 545-546, 560-564, 570-571

prognosis and predicted probability of death, 565-567, 568

race/ethnicity and, 552-554, 555

research needs, 98

social and support services, 68

terms and concepts, 534-536

When Children Die report recommendations, 422-432

Pediatric Health Information System (PHIS) data, 538, 539, 557, 558, 564, 565, 566, 567, 568, 569

Pediatric Palliative Care Network, 424, 425

Perceptions, public

clinician communication, 447

cost drivers, 487, 526

death and dying, 20, 30-31, 149, 445-446, 451

living wills, 117

politicization of end-of-life care and, 367, 446

and preference for care, 117, 149

prognosis, 164-165

public education and, 371, 451

quality of care, 20, 80, 21-22, 247

quality of life, 146, 147

racial, ethnic, and cultural differences, 149-150

shared decision making, 80

Performance measurement benchmark, 317, 472

Pew Research Center, 347, 352

Religion and Public Life Project, 148-149

Physician-assisted suicide, 362-363

Physician Data Query (PDQ^®), 67, 423

Physician Orders for Life-Sustaining Treatment (POLST) (see also Medical orders, defined), 17, 121, 123, 172, 173-179, 180, 182, 183, 184, 187, 188, 189-190, 217-219, 323, 331, 358, 389, 448

Physicians (see also Clinician-patient communication)

quality of end-of-life care, 282-284

treatment preferences of, 23-24

Pioneer accountable care organization program, 317, 318, 468, 471, 472, 473

Practice-based research networks, 99

Preferences of patients and families

advance care planning and, 11, 12, 13, 18, 125-127, 144-155, 189, 369, 510

cancer and, 55, 132, 133, 140, 165, 171, 214, 215, 510

clinician discussion with family and patients, 11, 13, 20, 350-352

and costs of care, 2, 15, 21, 510

delivery of care, 55, 56, 94

honoring, 31, 119

nursing home residents, 16, 176, 177, 216

palliative care, 77, 169

physician preferences compared to, 23-24

by population, 141-157

public education and, 19

public perceptions of death and dying and, 117, 149

and quality of care, 2, 16-17, 22, 77, 307-314

quality of life, 11, 24

race/ethnicity and, 152-154

recommendations, 10, 16-17, 19

site of death, 33-34, 119

supportive care versus acute services, 22

Premier Perspective Database (PPD) data, 538-539, 565

Presbyterian Healthcare Services, 70

President’s Council on Bioethics, 125, 150

Primary care

advance care planning, 186

basic palliative care, 7 n.2, 14, 20, 27, 52, 59, 70, 221, 224, 225-226, 229, 233, 235, 238, 251, 252, 385, 416

and coordination and continuity of care, 49-51, 68

defined, 49 n.1

delivery of, 49-52, 70

geriatrics, 10, 50, 52, 227 n.5, 232, 282

and hospital admissions, 51

pediatrics, 68

providers and roles, 49-50

Professional education and development in end-of-life care

advance care planning, 181, 225, 227, 237

chaplains, 15, 222, 228, 230, 247-248, 252, 418

communication skills, 13-14, 225, 226, 229, 230, 231, 232 n.11, 233, 234, 235-237, 241, 250, 251-252, 428, 451

continuing medical education, 222, 229-231, 239, 243, 244, 251, 415, 428

cross-cutting considerations, 233

curriculum, 13, 221-222, 223, 226-233, 234, 237, 245, 250, 251, 415, 416, 417, 428, 429, 451

domains of clinical competence, 225

faculty development, 13, 222, 228, 229-230, 231-232, 236, 237, 415, 416, 431

funding/fellowships, 32, 221, 222, 226, 235, 238, 239, 240, 244, 415, 416, 417, 428

hospice care, 13, 14, 48

impediments to changing culture of care, 13, 225-237

infrastructure, 223, 251

interprofessional collaboration, 13, 226

knowledge base of palliative care, 223

licensure and certification, 14, 48, 59 n.6, 84, 100, 221, 228-229, 238-240, 241, 242, 243, 247-248, 250-251, 418

long-term care, 229-230, 233, 247

medical education, 222-223, 226-231, 238-240

nurses, 13, 14, 15, 221, 222, 223, 225, 226, 228, 229-230, 231-232, 237-238, 240-243, 251, 415, 416, 423, 428

palliative care, 13-15, 69-70, 102, 221-253

pharmacists, 14, 245-246

physician specialists, 238-240

progress and continuing needs, 221-225, 250

public health schools, 232-233

public testimony on importance, 451

recommendations, 14-15, 252-253

rehabilitation therapists, 14, 248

social workers, 14, 243-244

team roles and preparation, 13, 237-249, 251

undergraduate and graduate medical education, 226-229

Prognosis

APACHE tool, 92

cancer care and, 30, 88, 89-90, 91, 294, 466

CARING criteria, 89-90, 91

Cheng factors, 89-90, 92

clinician-patient communication, 92, 160-161

dementias, 88, 91

ePrognosis, 92

Health and Retirement Study, 91-92

hospitalization and predicted probability of death, 90, 91, 92, 565-567, 568

implications of, 30, 87-88

intensive care and, 89, 90, 92, 119, 165, 512

and Medicare Hospice Benefit, 88, 90, 92, 102

nursing home residents, 90, 91

and palliative care, 89-90, 91, 92, 233

PaP score, 89-90, 91

pediatric care and, 565-567, 568

predictive models, 89-92

public perceptions of, 164-165

research needs, 98

“surprise” question, 92

uncertainties in, 30, 47, 88-89, 92

Prognosis in Palliative Care Study (PIPS), 90, 91, 99

Program of All-inclusive Care for the Elderly (PACE), 177, 287, 302, 303, 467, 479, 522

Program to Enhance Relational and Communication Skills, 230, 428

Project Compassion, 352, 354, 420

Project on Death in America (PDIA), 32, 222, 244, 416

Public education and engagement (see also Campaigns, public education and engagement)

advance care planning, 18, 19, 20, 32, 121-124, 125, 172-173, 345, 346-347, 352-353, 354, 355, 356-357, 358, 359, 360, 370, 371, 420, 421

attitude trends, 347-348

and cancer care, 365

choices of care, 348-350

climate and venues for discussions of death and dying, 352-355

controversial issues, 362-370

knowledge about end-of-life care, 347-352

palliative care, 18, 347, 348-349, 351, 353, 358, 364, 368

preferences for care, 350-352

public testimony on importance, 451

recommendation, 19-20, 370-371

social media, 365-366

terminology and, 348-350

Q

Quality-adjusted life-year (QALY), 325 n.34

Quality Assessment and Performance Improvement Plan, 83, 411

Quality Improvement Organization Program, 53, 79

Quality Incentive Program, 471

Quality-of-care measurement and reporting

ACOVE initiative, 79, 84-85, 410

Carolinas Center for Medical Excellence, 79

Centers for Medicare & Medicaid Services requirements, 79, 83-84, 411, 469

current efforts, 77-79, 80-82

evidence-based performance measures, 84-85

feeding tubes in dementia patients, 79

hospice, 7, 77-78, 79, 81, 83-85, 86, 411

intensive care/critical care, 77, 79

limitations of current efforts, 76-77, 80-82

Measuring What Matters initiative, 84-85

Medicare requirements, 7, 77-78, 79, 81, 83-85, 86, 411

National Committee for Quality Assurance assessment, 82

National Consensus Project for Quality Palliative Care Clinical Practice Guidelines, 9, 78-79, 84, 85, 87, 214, 246, 410

National Quality Forum criteria, 77-78

opportunities for enhancing, 82-85

PEACE Project, 79, 84-85, 410

research needs, 98

satisfaction indicator, 80, 518

site-of-death measure, 81

transparency, 28

Quality of end-of-life care

ACA and, 264, 265, 314, 327-328, 469

accountable care organizations and, 84, 317, 318, 468, 469, 473

advance care planning and, 135-137, 176-178

ambulatory care environment, 282-285

approaches to improving, 76-77

cancer care, 77, 81, 82, 411

chaplains and chaplaincy services and, 247

in clinician-patient communication, 79, 190

coordination of care and, 31, 76, 81, 82, 303-306

costs of care and, 15, 22, 275-302

delivery of care and, 55-57, 74-87, 275-302

dementias and, 38, 49, 54-55, 56-57, 74, 79, 249, 286, 411, 412

emergency departments, 281-282, 453, 560

financing and organization of care and, 467-469

hospice, 8, 50, 62, 65, 74, 77

hospital environment, 57, 78, 81, 84, 85, 280-282

improvement approaches, 76-77

in-home care, 38, 65, 70

long-term care/nursing homes, 54-55, 74, 81, 247, 277, 278, 286, 324, 326, 468, 480, 526

managed care environment, 285-287

Medicare and, 286-287, 293-294, 307, 324, 326

palliative care, 7, 8, 72, 74, 76-87, 96

patient, family, or caregiver education and, 76

physician services, 282-284

preferences of patients and families, 2, 16-17, 22, 77, 307-314

proposed core components, 85-87

public perceptions of, 20, 21-22, 80, 247

public testimony on, 448-451

reimbursement policies and, 4, 16, 25, 137, 269 n.6, 276, 279-280, 318, 451-452, 473, 504-505, 508

Quality of life

advance care planning, 147, 148

cancer and, 72, 73, 290

concurrent care and, 72, 412

FACT-L scale, 72

hospice care and, 30, 63, 65

palliative care and, 1-2, 7, 30, 45, 46, 58, 59, 62, 65, 69, 72-73, 74, 98, 101, 233, 290

Quinlan, Karen Ann, 363-364

R

Racial, ethnic, and cultural differences (see also specific populations)

advance care planning, 11, 49, 125, 148-155, 188

clinician-patient communication and, 149-150, 152, 154, 155, 522

and continuity of care, 155-156

and costs of care, 494-497

delivery of care, 49, 60

diversity trends in the United States, 38

hospice patients, 60, 61-62, 150, 153

and intensive care utilization, 49, 151, 506

life expectancy, 34

Medicaid enrollees, 495, 497

nursing home residents, 152-153, 496, 497

palliative care, 60, 240

pediatric care, 552-554, 555

quality of care, 153

RAND Corporation,79, 410

Recommendations

advance care planning, 12-13, 17, 19, 20, 32, 190-191, 370, 371

clinician-patient communication, 12-13, 190-191

delivery of care, 10, 103-104

financing care, 16-17, 330-331

hospice and palliative care, 10, 14-15, 103, 252-253

professional education and training, 14-15, 252-253

public education and engagement, 19-20, 370-371

Reimbursement policies and methods

ACA reforms, 280, 315-316, 478

accountable care organizations, 279-280, 317-318, 468, 471, 472, 479

ancillary services, 284-285

advance care planning, 17, 117, 121, 188-189, 320, 323, 331, 368, 369-370, 464, 468

bundled payment model, 314, 316, 327-328, 455, 458-459, 469-475, 479

cancer treatments, 65 n.8

capitation, 278, 279-280, 285-287, 315-316

in clinician-patient communication, 452

and costs of care, 137, 269 n.6, 276, 279-280, 318, 451-452, 473, 504-505, 508

diagnosis-related group methodology, 461

dual eligibility and, 271-272, 273, 278, 286, 287, 298, 302-303, 310, 315, 328, 386, 474-475, 522

emergency services, 281-282, 296, 467

fee-for-service policy, 16, 33, 36, 37, 52-53, 139, 265, 269, 276, 277, 278, 279-280, 282, 283, 285, 316, 317, 318, 322, 327, 328-329, 386, 388, 409, 461, 466, 467, 469, 470, 472, 473, 503, 504-505, 523