INDEX*

A

Abortion, induced, 49, 81, 294, 367

Abortion, spontaneous, 49

A-byss’, 164-165

Access to and availability of palliative care

geographic barriers, 23, 139, 202

home health care, 215

hospice care, 133, 204, 207-210, 215, 254-255

inpatient care, 204, 207-210, 271-273

payment systems and, 5-6, 12, 23, 235, 238, 253, 260, 265, 291

racial and ethnic disparities, 7, 23, 64

socioeconomic differences in, 6, 168, 170

Accidents. See Unintentional injuries

Accountability, 181-187, 231

Accreditation, licensure, and professional standards, 16, 163, 186, 200, 307, 312, 338, 339-340, 345, 349, 364

Adolescents

cancer, 44-45, 60, 61, 72, 79-81

communication of bad news to, 120 n.1

death rates and numbers, 59, 60, 63-64, 66

defined, 32

emancipated minors, 323, 325

leading causes of death, 43, 44-45, 60, 61, 63-64, 66

psychological and emotional care, 64, 139, 153-154, 157-158

school reentry, 79-80

sexual issues, 158

treatment decisionmaking, 79-81, 139, 157, 295, 296, 318, 323-325

Adults compared to children

cardiopulmonary resuscitation, 316-317

decisionmaking, 130, 134, 139, 295, 296

hospice care, 216

legal status, 10-11, 130, 134, 139, 190, 216, 323-325

mortality rates by cause of death, 43-47, 58

palliative care, 3, 4-7, 21, 35, 331

Advance care planning, 6, 87, 129-133, 248, 310

Advance directives, 6, 22, 130, 140, 183-184, 185 n.2, 307, 317

Advanced Illness Coordinated Care model, 248

Agency for Healthcare Research and Quality (AHRQ), 265 n.24

Aid to Families with Dependent Children (AFDC), 249

Alabama, 62

Alaska, 237, 251, 277

American Academy of Hospice and Palliative Medicine, 25, 329

*  

Index does not include Appendices.



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INDEX* A Abortion, induced, 49, 81, 294, 367 Abortion, spontaneous, 49 A-byss’, 164-165 Access to and availability of palliative care geographic barriers, 23, 139, 202 home health care, 215 hospice care, 133, 204, 207-210, 215, 254-255 inpatient care, 204, 207-210, 271-273 payment systems and, 5-6, 12, 23, 235, 238, 253, 260, 265, 291 racial and ethnic disparities, 7, 23, 64 socioeconomic differences in, 6, 168, 170 Accidents. See Unintentional injuries Accountability, 181-187, 231 Accreditation, licensure, and professional standards, 16, 163, 186, 200, 307, 312, 338, 339-340, 345, 349, 364 Adolescents cancer, 44-45, 60, 61, 72, 79-81 communication of bad news to, 120 n.1 death rates and numbers, 59, 60, 63-64, 66 defined, 32 emancipated minors, 323, 325 leading causes of death, 43, 44-45, 60, 61, 63-64, 66 psychological and emotional care, 64, 139, 153-154, 157-158 school reentry, 79-80 sexual issues, 158 treatment decisionmaking, 79-81, 139, 157, 295, 296, 318, 323-325 Adults compared to children cardiopulmonary resuscitation, 316-317 decisionmaking, 130, 134, 139, 295, 296 hospice care, 216 legal status, 10-11, 130, 134, 139, 190, 216, 323-325 mortality rates by cause of death, 43-47, 58 palliative care, 3, 4-7, 21, 35, 331 Advance care planning, 6, 87, 129-133, 248, 310 Advance directives, 6, 22, 130, 140, 183-184, 185 n.2, 307, 317 Advanced Illness Coordinated Care model, 248 Agency for Healthcare Research and Quality (AHRQ), 265 n.24 Aid to Families with Dependent Children (AFDC), 249 Alabama, 62 Alaska, 237, 251, 277 American Academy of Hospice and Palliative Medicine, 25, 329 *   Index does not include Appendices.

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American Academy of Pediatrics (AAP), 8, 25, 90, 124, 134, 192, 193, 197, 199, 206, 207, 208, 214, 274, 275, 276, 278, 296 n.2, 299, 300, 313, 323 n.15, 326, 362, 387 American Association for Collegiate Nursing, 337 American Association of Colleges of Nursing, 347 American Association of Critical Care Nurses (AACCN), 198 American Association of Retired People, 263 American Board of Internal Medicine (ABIM), 335 American Board of Pediatrics (ABP), 196 n.5 American College of Physicians-American Society for Internal Medicine (ACP-ASIM), 310 American Medical Association (AMA), 195, 278, 280 n.36, 306 n.14, 336, 347 American Psychological Association (APA), 258, 337 American Society of Clinical Oncology (ASCO), 186-187 Anencephaly, 54, 81-82, 110, 294, 305, 316, 322 Aney, Christine, 180 Anorexia-cachexia syndrome, 146-147 Antibiotics, 39 Appropriate care, 75, 90-91, 307, 326-327. See also Quality of care Arizona, 237, 277 Art and music therapy, 122, 128, 135, 155-156, 164-165, 246 Assisted suicide/euthanasia, 149, 294, 301 Asthma, 48 Atelectasis, 44 Autism, 48 Autopsies and investigations, 55-56, 77, 124, 131, 152, 153, 167, 178, 278 Avila, Rosario, 21 Avila, Salvador, 1, 197 B BadgerCare program, 260 Balanced Budget Act of 1997, 251, 266, 268 Benign neoplasms, 44. See also Cancer Bereavement. See also Grief; Mourning defined, 35 protective factors, 373 Bereavement care for clinical caregivers, 226 education and training in, 337 in emergency departments, 5, 124, 174 insurance coverage, 13, 14, 241, 242, 246-247, 258 interventions, 175-179 National Association of Social Workers (NASW) guidelines, 124, 174 palliative care integrated with, 13, 210, 225, 226, 290-291 pathways of dying and, 154, 171-175 by pediatric care team, 5, 178-179, 230 perinatal death and, 366-368 providers, 200 recommendations, 11, 230-231, 291 research directions, 176, 366-368, 370-373 siblings, 177-178 support groups, 109, 167, 173, 176 working principles, 7 Best Pharmaceuticals for Children Act, 352 Beth-Israel Deaconess Hospital, 227 Birth asphyxia, 50 Birth defects. See Congenital anomalies and disorders Blue Cross Blue Shield, 241, 242, 248, 265, 354 Bone and joint tumors, 61, 79-81 Borchart, Pam, 113 Boston Children’s Hospital, 68, 225, 354 Bowel problems, 146 Brain and central nervous system cancers, 58, 61 Brain death, 36-37, 74, 294, 305 n.12, 321, 369 Bula, Kathleen and James, 104 Bureau of Labor Statistics, 241, 242, 244 Burn injuries, deaths from, 57 C California, 286, 340 Camps, 135, 156, 223-224, 335 Canada, end-of-life care in, 69, 70, 207 Canadian Pediatric Society, 207

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Cancer adolescents’ deaths from, 44-45, 60, 61, 72, 79-81 adult deaths compared, 58 children’s deaths from, 5, 44, 46, 48, 56, 57-58 financing of care, 261 life-sustaining treatment decisions, 96, 296 models for care, 86 optimistic assessments, 101 pain and symptom management, 90, 91, 92, 94, 97, 144, 145, 185-187, 208 pediatric care centers, 206, 355-356 prognostic assessment, 112, 121 relapsed, 112, 113, 126, 130, 296 site of children’s deaths from, 68 trajectory of dying, 79-81 treatment options and goal setting, 96, 125 Cardiopulmonary resuscitation, 38-39 Care teams. See Interdisciplinary care teams; Multidisciplinary care teams; Pediatric care teams Caricel (Hospice of Northern Virginia), 132 n.4 Case management programs, 188, 193, 224, 240, 247-248, 251 n.13, 260, 287 Center for Advanced Illness Coordinated Care, 354-355 Center to Advance Palliative Care, 89 n.2, 272 n.30 Center to Improve Care of the Dying, 183 Centers for Disease Control and Prevention, 265 n.24 Centers for Medicare and Medicaid Services, 13, 14, 25, 215, 265 n.24, 268, 291, 354 Cerebral palsy, 47 Chaplains/pastoral counselors, 162-166, 167, 174, 200, 246, 275, 314, 337, 338 Charitable Leadership Foundation, 354 Child Abuse Amendments of 1984, 326 Child- and family-centered care, 8-11, 190-193, 228 Childhood. See also Death in childhood periods of, 32 Child-life specialists, 199-200, 246, 275, 338 Children. See also Adolescents; Infants; Siblings abuse and neglect, 55-56, 59, 174, 319, 326 brain death criteria, 36-37, 74, 294, 305 n.12, 321 communication with, 92, 114, 120-123, 133, 138-139, 143-144, 155-156, 166, 178, 194, 199 death rates and numbers, 3-4, 41, 42, 49, 56 defined, 32 diagnosis of fatal and life-threatening conditions, 110-111 emotional and psychological care, 75, 92, 94, 102, 135, 136, 153, 154-158, 224 end-of-life discussions with, 92, 121-122, 138-139, 176-177 functional status assessment, 137 involvement in treatment decisionmaking, 10-11, 79-81, 123, 130, 133-134, 138-139, 155, 190-191, 294, 296, 376-377 leading causes of death, 5, 43, 44, 57-59 normal response to illness, 154 orphans and wards of the state, 69, 326, 387, 389 as research participants, 134, 351, 386-390 seat belts and safety seats, 57 with special health care needs, 47-49, 82-84, 221, 261 spiritual care for, 136, 164-166 training and education in self-care, 214 U.S. population, 41 Children’s Bridges, 132 n.4 Children’s Health Act, 351, 389 Children’s Hospice International, 25, 215 Children’s Hospital and Health Center of San Diego, 354 Children’s Hospital and Regional Medical Center of Seattle, 247-248, 271, 354 Children’s Hospital at The Cleveland Clinic, 193 Children’s Hospital of Philadelphia, 354 Children’s Hospital Wisconsin, 193 Children’s International Project on Palliative/Hospice Service, 215, 329 Children’s Mercy Hospital, Kansas City, 354

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Children’s Oncology Group (COG), 26, 197, 356-357, 381 Choking and suffocation, 57 Christus Santa Rosa, 210 Chronic lower respiratory diseases, 44-45 City of Hope National Medical Center, 347 Classification of congenital and chronic health conditions, 271 Clinical trials, 264-265 College of Emergency Medicine, 124 Colorado, 62, 259, 286 Comfort care, 34-35, 185 n.2, 221-222, 318 Communication with adolescents, 120 n.1 of bad news, 99-103, 113-125, 199, 345, 384 with children, 92, 114, 120-123, 133, 138-139, 143-144, 155-156, 166, 178, 194, 199 and conflict resolution, 184, 310, 314-315 of diagnosis, 4-5, 75, 105, 108-110, 118 in emergency situations, 100, 113-114, 123-124, 199 ethnocultural considerations in, 121 example, 118-119 follow-up, 117, 123-124 of hope, 121, 159 importance for planning care, 8, 105-106 link between parents and care team, 199 measurement of skills in, 101 obstacles to, 116-117 organ donation requests, 101, 125, 167 with parents, 2, 10, 114-120, 123-125, 150, 159-160, 384 preparation for, 116 principles, 115-117 problems, 85, 90, 99-102 of prognosis, 4-5, 75, 110-113, 118 recommendations, 138-139 research directions, 229-230, 376-377 with siblings, 178 of sudden death without forewarning, 123-125 and symptom management, 143-144, 150 training of health professionals, 100, 101, 194, 328, 332-333, 334, 340, 342, 345 Community and regional systems of care delivery, 224-227, 232-233, 378-379 financing, 260, 261 objectives, 224-226 research directions on, 378-379 telemedicine, 10, 110, 214, 226-227, 233, 244, 256 Compassionate Friends, 176 CompassionNet, 248 Complementary medicine, 365-366 Complex chronic conditions, 52, 68, 69, 71, 96-97, 112, 193 Congenital anomalies and disorders Baby K, 305, 316, 322 causes and types of, 53, 54 deaths from, 5, 43, 44-45, 46, 50, 52-55, 56, 57, 60, 74, 75, 81-82, 87 definitions, 52-53 detection, 53 heart disease, 32 n.1, 44, 46, 54, 69-70 and life-sustaining interventions, 99, 301, 305-306 prognosis, 110 site of death, 69-70 treatment options and goal setting, 125 Conlon, Rose, 158, 180 Connecticut, 254, 277 Consultative services with hospices, 10, 95, 132-133, 214, 217, 220, 232, 243-244 inpatient, 10, 226, 232 insurance coverage, 226, 243-244, 278, 280, 281, 290, 311 for palliative care, 10, 95, 102, 129, 209, 210, 232, 248, 290, 354 physician-parent, 309-310, 311 recommendations, 232 research initiatives on, 354 Continuous Quality Improvement (CQI), 182-183, 375 n.5 Coordination and continuity of care. See also Delivery of care; Quality of care advanced illness care, 193-195 challenges, 2, 3, 5, 78-79, 187-190 child- and family-centered care, 8-11, 190-193, 228 community and regional systems of care and, 224-225 definitions, 189 financing of care and, 12, 23, 168, 188, 239, 241-242, 247-248, 261, 266, 284-286, 287

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geographic barriers, 193 hospice care and, 190 hospital role, 225-226 integrational structures or processes, 185, 188 measure of, 184 «medical home» concept, 9, 189, 192-193, 224 Pediatric Advanced Illness Care Coordination (PAICC) program, 193-195, 354, 377 recommendations, 9-10, 231-232 and satisfaction with care, 189 sourcebook on model programs, 183-184 Critical incident stress management, 369-370 Cultural considerations, 11, 23, 40, 77-78, 121, 127, 132, 133-134, 138, 295, 296, 302, 340 Custodial care, 279 Cystic fibrosis, 32 n.1, 38, 69, 97-98, 223, 224 D Dana-Farber Cancer Center, 68, 225, 354 Death in childhood. See also Mortality rates; Pathways of dying adolescents, 59-61 adult patterns contrasted, 43-47, 58 ages1 to 4 and 5 to 9, 42, 56-59 cultural perceptions of, 40 from curable, but life-threatening condition, 73, 74, 75, 78-79 declaration of, 36-37, 74, 369 extended illness preceding, 72, 171-173 good vs. bad, 40, 84-85, 95, 132 infant, fetal, and perinatal, 49-56 investigations and autopsies, 55-56, 77, 124, 152, 153, 167, 178, 278 leading causes of, 4-5, 38, 43, 44-47, 49-56, 57-59, 60-61, 74, 75, 78, 81-82, 87 percentage of U.S. population, 41 practical dimensions of care after, 125, 168 preparing for, 72, 173 progressive condition with intermittent crises, 74, 75, 82-84, 87-88, 112 public health advances and, 41-49 reporting to medical examiner, 131 risk factors for, 63-66, 67 site of, 66, 68-70, 80-81, 130-131, 151, 203-204, 224 sudden and unexpected, 1, 42, 72, 74, 77-78, 123-125, 152, 154, 172, 173-175, 368-370 Decisions about care. See also Ethical considerations; Parent-clinician conflict resolution; Treatment decisionmaking and goal setting ethical and legal criteria in, 300-302 Decisions Near the End of Life program, 347 Delaware, 286 Delivery of care. See also Coordination and continuity of care; Quality of care community and regional systems, 224-227, 232-233, 378-379 focus and adequacy of, 88-102 organizations and settings, 203-224 outcome and performance measures, 376 professionals, 195-203 recommendations, 229-232, 373-379 Department of Defense (DoD), 265, n.24 270 Department of Health and Human Services (HHS), 47, 326, 389 Department of Veterans Affairs (VA), 265 n.24, 346 Diagnosis of life-threatening and fatal conditions aspects in children, 106-107 communication of, 4-5, 75, 105, 108-110, 118 information resources for families, 105, 108-110 prenatal, 25, 107, 172, 173, 217, 366-368 of rare conditions, 22, 108 support for children and families while waiting for, 107-108 uncertainty in, 108 Discharge planning procedures, 188, 224 Disease management programs, 188, 193 Disease-modifying interventions, limiting, 96-99 District of Columbia, 62 Do-not-resuscitate (DNR) orders, 92, 96, 130-131, 207, 210, 221, 294, 296, 299-300, 312, 322, 325, 326, 336, 346

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Dokken, Deborah, 19, 293, 344 Down syndrome, 37, 54, 133, 316, 326 Drowning, 57, 70 Drugs. See Prescription drugs Duchenne muscular dystrophy, 54 Dying. See also Death in childhood; Pathways of dying defined, 36 Dysphagia, 147 Dyspnea and cough, 144, 147 E Edmarc, 215, 220 Education Development Center of Boston, 24, 354 Education of health care professionals accreditation, licensure, and professional standards and, 16, 338, 339-340, 345, 349 basic elements, 328, 330-333 in communication and interpersonal skills, 100, 101, 194, 328, 332-333, 334, 340, 342, 345, 384 continuing medical education, 25, 333, 334, 347 on cultural dimensions of care, 340 current status, 85, 334-339 on ethical and professional principles, 307-308, 312, 314, 315-316, 333, 336, 341, 346, 347 faculty development, 346-347 graduate medical school, 330, 336, 340 hospice and inpatient palliative care experiences, 216, 328-329, 333, 334, 335, 337, 345-346 improvement initiatives, 339-347 integration and illustration, 341 mentors and role models, 344, 346 nursing, social work, and others, 198, 329, 336-338, 346, 347 organizational knowledge and skills, 231, 333 patients and families as teachers, 344-347, 383 on quality assessment and improvement, 340 recommendations, 15-16, 233, 348-349 research directions for, 348-349, 382-385 residency programs, 2, 16, 199, 336, 339, 340, 342-343, 344, 346, 349 scientific and clinical knowledge and skills, 231, 332, 341, 384-385 simulated or standardized patients or parents, 345, 383 teamwork preparation, 203, 340, 342, 384 techniques and tools, 342-344 textbooks and educational materials, 25, 198, 329, 337, 338-339, 341, 347, 369-370 undergraduate medical school, 330, 334-335 Education of Physicians on End-of-Life Care (EPEC) Project, 347 Edward’s syndrome, 54 Emancipated or mature minors, 323, 325 Emergency departments, services, and personnel. See also Neonatal intensive care units; Pediatric intensive care units bereavement care by, 5, 124, 174 child deaths in, 68, 69, 70, 207 communication of bad news, 100, 113-114, 124, 199, 345 and DNR orders, 207, 296, 299 education requirements, 343 psychological support for, 370 research directions, 351, 353-354, 368-370 triage protocols, 304-305 Emergency Treatment and Active Labor Act, 305, 322 Emotional and psychological care of adolescents, 64, 139, 153-154, 157-158 for children who are ill, 75, 92, 94, 102, 107-108, 135, 136, 153, 154-158, 224 dimensions, 153-154 for families, 107-108, 136-137, 139-140, 154, 158-162, 172, 369-370 for hospice workers, 216, 333 pain and symptom management, 94, 145, 199 for parents, 88, 154, 159-160, 258, 363 psychotherapy, 155-156 school attendance, 156 for siblings, 64, 161-162, 199, 258, 363 writing therapy, 155-156, 164-165, 377 Employee assistance programs, 170

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Employee Retirement Income Security Act of 1974, 240 End of life defined, 36 discussions with children, 92, 121-122, 138-139, 176-177 End-of-life care. See also Hospice care for children; Palliative care for children child patient’s involvement in decisions about, 138-139 decisionmaking about, 126, 129-131, 138-139 defined, 2, 34 delivery of, 88 managed care and, 283-286 pain and symptom management, 148-149, 301 physician involvement in, 95, 101-102 quality improvement projects, 183-184 sedation controversy, 149, 301 working principles, 7 End-of-Life Nursing Education Consortium, 347 End-stage renal disease, 223, 266 n.25, 269 England, hospice care for children, 69, 92, 220, 264 Enteritis with diarrhea, 43 Essential Care (Center for Hospice and Palliative Care, Buffalo), 132 n.4 Ethical considerations abusive parents and other caretakers, 59, 174, 294, 321 adolescent decisionmaking, 318, 323, 325 Baby K case, 305, 316, 322 clinicians’ core obligations, 303-304 at collective level, 304-307 double-effect decisionmaking, 301, 341 education in, 307-308, 312, 314, 315-316, 333, 336, 341, 346, 347 «futile» treatment, 305-306, 315 at individual level, 302-304 in practice, 307-308 in rationing of care, 302, 304-305, 318, 341 in research involving children, 134, 351, 386-390 screening for conditions with no effective treatment, 302 sedation controversy, 149, 301 in spiritual matters, 165-166 Ethics committees, 293, 309, 312-314, 322 Ethnocultural differences. See also Cultural considerations in access to health care, 7, 23, 64 and communication of bad news, 121 conflicts or misunderstandings, 127, 132 education of health professionals on, 340 in mortality rates, 64-66, 67 in perceptions of death, 40 special problems of immigrants, 23, 77-78 in treatment decisionmaking, 127, 132, 133-134, 138, 296, 302 Excellus, 248 F Faith communities, support from, 171, 264. See also Chaplains/pastoral counselors; Spiritual careFamilies bereavement support groups, 109, 167, 173, 176 burdens on, 6, 22-23, 72, 82-84, 139-140, 143, 187-188, 211, 247, 262-263, 268-269, 279, 288, 306 defined, 33 emotional care for, 107-108, 136-137, 139-140, 154, 158-162, 172, 369-370 navigation of health care system, 108 physical care for, 142 presence during resuscitation, 151 respite care for, 154, 156, 170, 171, 220-221, 241, 247, 258, 263, 272 spiritual care for, 136-137, 166-167, 173 support network, 75, 139-140, 158-159, 162 as teachers, 344-347 training of caregivers, 188, 191, 214, 263, 269, 279 Family practitioners, 195-196, 340 Family Voices, 192 Fatal medical condition, 37 Fatigue, 91, 93, 147 Federal Tax Equity and Fiscal Responsibility Act of 1982, 252 n.14 Federation of State Medical Boards (FSMB), 345

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Feeding tubes, 222. See also Hydration and nutrition, artificial Fetuses, 36 n.3, 49, 50, 51, 54, 65 Feudtner, Chris, 133 Financing of care. See also Health insurance coverage, private; Medicaid/Medicare coverage; Payment/reimbursement for health care access issues, 5-6, 235, 238, 253 bereavement services, 13, 241, 242, 246-247, 258 clinical trials, 264-265 community and regional systems, 260, 261 consultative services, 226, 290, 311 and coordination and continuity of care, 12, 168, 188, 239, 241-242, 247-248, 261, 266, 284-286, 287 coverage variability, 11-12, 238-239 and decisions about care, 295, 301-302, 382 family out-of-pocket payments and caregiving, 262-263 home health care, 214, 241-244, 255-256, 266, 290, 381 hospice care, 12-13, 34, 48, 112-113, 132-133, 170, 210, 217, 218-219, 220, 240-241, 242, 254-255, 260, 263-264, 272, 280, 281, 282-283, 284, 289-290, 381 negative aspects of current systems, 12-13, 235, 288-292 philanthropy and volunteer funding and services, 220, 264, 273 positive aspects of current systems, 287 recommendations, 12-13, 289-291 research directions, 26, 291-292, 379-382 respite care, 220-221 safety net providers, 12, 77-78, 206, 238, 263-264, 267, 268 sources of payment, 236-238 State Children’s Health Insurance Program, 236, 238, 260, 275, 278 telemedicine applications, 226 Title V Maternal and Child Health Block Grants, 168, 236, 256, 261-262, 286, 287 Florida, 227, 257, 259 Food and Drug Administration (FDA), 246 n.7, 351-352, 389-390 Food and Drug Administration Modernization Act of 1997, 351 Foundation for the National Institutes of Health, 353 G Gender differences, in cause of death, 59, 63-64 Gene therapy, 38 General Accounting Office (GAO), 277, 353 Genetic counseling, 107 Geographic differences in access to care, 139, 202 in coordination and continuity of care, 193 in health insurance coverage, 236-237, 238 mortality rates by cause of death, 62-63 George Marks Children’s House, 220 George Washington University, 345 Georgia, 256 Germ cell cancers, 61 Goals and options for treatment. See Treatment decisionmaking and goal setting Goldman, Ann, 97, 132 n.4 Grief. See also Bereavement care; Mourning anticipatory, 35, 159, 172-173 care, 171-175 complicated, 35, 175, 372 defined, 35 in health professionals, 35-36 pathways of, 72 preparing for death, 173 sudden and unexpected death and, 64, 173-175 Guidelines. See Practice guidelines and protocols Gunshot injuries and deaths, 59, 61, 66 H Hackensack University Medical Center, 193 Harvard University Medical School, 315, 344, 346 Hawaii, 62-63, 237 Health Care Financing Administration (HCFA), 251, 265 n.24, 268, 271 n.28, 272, 286

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Health care professionals. See also Education of health care professionals; Pediatric care teams; specific types of providers competencies, 331-333, 341 diagnostic and therapeutic personnel, 200 emotional and psychological support for, 226, 332-333 family support by, 369-370 mix of providers, 195 pediatric subspecialties in, 196-197 Health care safety net, 263-264 Health insurance coverage, private. See also Financing of care; Payment/reimbursement for health care bereavement services, 13, 14, 241, 242, 246-247 for children, 236-238 flexible spending accounts, 240 geographic differences in, 236-237, 238 home health care, 241-244 hospice care, 2, 34, 132-133, 240-241, 242-243 innovations in, 247-248 inpatient hospital care, 244 palliative care, 2, 5-6 for practical dimensions of care, 167-168, 170 prescription drugs (outpatient), 244-246 psychosocial, respite, and other services, 200, 246-247 rates, 236, 239-240 reimbursement methods, 268 respite care, 241, 247, 263 traditional focus, 234 Health insuring organizations, 251 n.13 Health maintenance organizations (HMOs), 168, 241, 245, 251 n.13, 276, 284 Heart disease, 5, 32 n.1, 44, 46, 54, 56, 60, 69-70 Heartsongs, 155 Helen House, 69, 92, 220 Heyl-Martineau, Tina, 72, 129, 328 HIV/AIDS, 45, 66, 69, 120 n.1, 158, 160, 223, 224, 351 Home, as site of death, 68-69, 71, 80-81, 130-131, 151-152 Home health care AAP guidelines, 214 access to, 215 financing of, 214, 241-244, 255-256, 266, 290, 381 frequency, duration, and type of services, 214 hospice services, 69, 97-98, 132, 197-198, 204, 210, 211, 214-220, 240-241, 248, 254-255, 281, 335 information resources, 110 nurses, 197-198, 211 pain and symptom management at, 149, 211, 214 physician services, 279 providers and caseloads, 211, 214 questions about, 217, 218-219 Homicides adolescent deaths, 60, 61, 63-64, 66 children’s deaths, 56, 57, 59 communication about, 125 failure to provide medical care as, 320 mortality rates, 5, 44-45, 46 psychological impacts of, 64, 174 racial differences, 65 regional differences in rates, 62-63 Hope, communication of, 121, 159 Hope Hospice, 227 Hospice care for children adult care compared, 216 availability and quality of, 133, 204, 207-210, 215, 217, 254-255 barriers to use, 12, 217, 268-269, 289-290 categories of, 282 consultation services, 10, 95, 132-133, 214, 217, 220, 232, 243-244 and continuity of care, 190 defined, 34-35 demonstration projects, 259 education and training programs, 333, 334, 335, 337, 345-346 elements and focus, 215-220 emotional care for workers, 216, 333 financing of, 12-13, 34, 48, 112-113, 132-133, 170, 210, 217, 218-219, 220, 240-241, 242, 254-255, 260, 263-264, 272, 280, 281, 282-283, 284, 289-291, 381 first program, 215 home care services, 69, 97-98, 132, 197-198, 204, 210, 211, 214-220, 240-241, 248, 254-255, 281, 335 inpatient programs, 98, 207-210

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licensure restrictions, 307 Medicaid/Medicare eligibility, 2, 34, 48, 112-113, 131, 210, 211, 219-220, 254-255, 289 perinatal, 25, 107, 152, 172 physician services, 279 potential beneficiaries of, 48 for practical dimensions of care, 170 questions about, 217, 218-219 recommendations, 12-13, 290-291 research directions, 290, 381 residential services, 69, 170, 220-221 spiritual care, 163, 200 telemedicine applications, 227 volunteer activities, 335 Hospice of the Florida Suncoast, 220 Hospitals. See also Inpatient care accreditation standards, 163 chaplains, 162, 163 compassionate nondischarge policies, 272 coordination role, 225-226 grief support for families, 11, 173, 230-231 lengths of stay, 69-70, 268-269 payment/reimbursement methods, 267-273 as site of death, 66, 68, 69 visiting policies, 207, 314 Hostetler-Lelaulu, Susan, 145 Hydration and nutrition, artificial, 39, 143, 298, 299 Hynan, Michael, 126 I Idaho, 277 Illinois, 62 Infants. See also Prematurity/low birth weight death rates and numbers, 3, 42, 43, 44, 49, 51, 62, 63, 65 defined, 32 leading causes of death, 43, 44, 49-56 pain management issues, 90, 94-95, 207, 331 rare, fatal disorders, 22, 70-71 risk factors for, 65 stillborn, 152, 176 symptom measurement in, 363 terminology related to, 50 Infections, infant deaths from, 49, 55 Influenza. See Pneumonia and influenza Information resources for families, 10, 105, 108-110, 133, 140, 231-232, 233 Informed consent documents, 119 Initiative for Pediatric Palliative Care, 24-25, 347 Injuries. See also Intentional injuries; Unintentional injuries and emergency medical services, 70 mortality rates from, 5 risk factors for mortality from, 66, 67, 71 site of, 69 Innovation in End-of-Life Care, 184 Inpatient care. See also Hospitals; Neonatal intensive care units; Pediatric intensive care units availability and quality of pediatric palliative care, 204-210 children’s hospitals and related institutions, 24, 69, 85, 205-207, 225-226, 268, 269-271 consultative services, 10, 226, 232 financing of, 244, 256, 271-273 follow-up or crisis care, 204 general hospitals, 204-205 palliative care and hospice programs, 85, 207-210, 212-213, 271-273 questions about, 212-213 Institute for Ethics, 347 Institute for Healthcare Improvement, 183 Insurance. See Financing of care; Health insurance coverage, private; Medicaid/Medicare coverage; Payment/reimbursement for health care Intentional injuries. See also Homicides; Suicides adolescents’ deaths from, 61 children’s deaths from, 43, 46, 59 Interdisciplinary care teams, 201, 377-378. See also Pediatric care teams International Classification of Diseases, 271 Internet-based support and information, 10, 109, 140, 152, 176, 184, 227, 341, 370-371 Intrauterine hypoxia, 49-50 Intraventricular hemorrhage, 55 Iowa, 270

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J Johns Hopkins Children’s Center, 354 Joint Commission on the Accreditation of Healthcare Organizations (JCAHO), 186, 312 K Kansas, 227 Kentucky, 259 Kittiko, Winona, 24, 211, 234 L Last Acts, 89 n.2, 228 Learning disorders, 48 Leukemia, 54, 58, 61, 94, 110, 130, 133, 324 Legal issues. See also Ethical considerations; Treatment decisionmaking and goal setting and cultural sensitivity, 295 emancipated or mature minors, 323, 325 newborns with severe handicap or extreme prematurity, 326-327 parent-child conflicts, 323-325 parent-clinician conflicts, 295-296, 318-322 parent-parent conflicts, 325 in site of death, 130-131, 151-152 wards of the state, 326 Life expectancy at birth, 42 Life Institute, 248 Life-limiting conditions, 37 n.4 Life support. See also Life-sustaining treatment defined, 38-39 ethical context for, 298, 299, 300, 305, 307 management of, 96-99, 149-151 withdrawal of, 98, 149-151, 294, 322, 369 Life-sustaining treatment appropriateness of, 75-76 clinicians’ attitudes about, 99, 297-298, 307-308 decisions about, 130-131, 295, 298-300, 309, 315 defined, 38-49 limiting, 96-99, 102, 130-131, 135 Life-threatening conditions, 37, 146-147 Litigation conflicts about care and, 317-318 insistence on treatment, 321-322 refusal of treatment, 319-321 Living will, 325 Loder, Patricia, 123, 173 Low birth weight. See Prematurity/low birth weight Lucile Packard Children’s Hospital, 344, 354 M Madigan Army Medical Center, 25 Maine, 62 Make-a-Wish Foundation, 154, 264 Managed care commercial organizations, 251 and end-of-life care, 283-286 home hospice care coverage, 241 implications of cost control techniques, 283-285, 287 Medicaid options, 193, 251, 257, 258, 269, 285-286, 287 payment/reimbursement methods, 267, 274-275 and physician providers of pediatric care, 196, 202 and practical dimensions of care, 168 prescription drug coverage, 257 provider networks, 284-285, 288 shifting financial risk, 267, 285 types of providers, 251 n.13 utilization review, 257, 283-284 Marital stress and divorce, 160 Maryland, 62, 236-237, 270, 277, 286 Massachusetts, 238, 277-278 Maternal and Child Health Bureau, 47, 124, 174, 192, 236, 261 Meals on Wheels, 171 Mechanical ventilation, 38-39, 93, 97, 150, 297, 298, 299, 300, 321, 326, 363 Medicaid/Medicare coverage and access problems, 253, 254-255, 277-278 bereavement services, 258 children enrolled in, 237, 238, 262 claims administration, 279-281 for clinical trials, 265

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of consultations and team conferences, 243-244, 278, 280 Current Beneficiary Survey, 235 n.1 early periodic screening, detection, and treatment (EPSDT) services, 250-251, 252-253, 254, 255-256, 258, 280-281, 289, 379 End-Stage Renal Disease program, 266 n.25, 269 freedom-of-choice waivers, 251 home health care, 255-256, 381 hospice benefit, 2, 12, 34, 48, 112-113, 131, 163, 200, 211, 219-220, 234, 240, 254-255, 282-283, 289-290 innovations in, 252-253, 259 inpatient hospital care, 256 and managed care plans, 193, 251, 257, 258, 269, 285-286, 287 «medically needy» option, 249, 258 mental health services, 257-258 physician acceptance of patients, 253, 277-278 of practical dimensions of care, 168 prescription drugs (outpatient), 256-258 prospective payment system, 266-268, 381 reimbursement issues, 253, 266-268, 271, 275, 276, 277, 279-280, 282-283, 289-90 respite care, 258 scope of, 226, 234, 236, 248-253 Section 1915(c) waivers (Katie Beckett programs), 251-252 telemedicine services, 226 Medical examiner, 167 «Medical home» concept, 9, 189, 192-193, 224 Medical information systems, 188 Medical power-of-attorney documents, 130, 325 Meier, Diane, 273 Memorials, 224 Mental Health Parity Act of 1996, 247 Mental health services for child or adolescent, 153-154 conflict resolution about treatment decisions, 309-310 education and training, 329, 337 financing of, 246-247, 257-258, 275, 281 providers for palliative care, 199-200 psychosocial assessment of child and family, 136-137 Mental retardation and developmental disabilities, 48, 82-84, 221, 257-258, 316 Michigan, 227, 257, 270, 286 Michigan State University, 227 Minnesota, 237 Mississippi, 62 Missouri, 277 Montana, 248 Mortality rates. See also individual stages of childhood by age and leading cause, 3-5, 43-47, 48, 52, 59, 60, 62-64, 66, 67 data sets, 62 n.6 ethnocultural differences, 64-66, 67 gender differences, 63-64 regional disparities in, 62-63 socioeconomic differences, 64-66, 71 Mothers in Sympathy and Support (MISS), 176 Motor-vehicle-related accidents alcohol use and, 61, 62 fatalities, 57, 60-61, 62, 63, 66 risk factors for, 61, 62, 63, 66 Mourning, 35, 160 Mouth problems, 147 Mt. Sinai School of Medicine, 89 n.2, 272 n.30, 273 Multidisciplinary care teams, 201. See also Pediatric care teams Muscular dystrophy, 69, 75, 87-88, 118-119, 134-135, 155, 298 Music therapy, 128, 156, 246 N Nathan Cummings Foundation, 24, 354 National Association of Children’s Hospitals and Related Institutions (NACHRI), 199, 205, 208, 270, 271 National Association of Social Workers (NASW), 124, 174 National Board of Medical Examiners, 340, 345 National Cancer Institute (NCI), 26, 57-58, 112, 355-356, 357, 389 National Center for Complementary and Alternative Medicine (NCCAM), 365 n.3 National Center for Health Statistics, 17, 355

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National Council of Hospice and Palliative Professionals, 337 National Hospice and Palliative Care Organization (NHPCO), 25, 166, 215, 329, 337 National Institute of Child Health and Development (NICHD), 353, 357 National Institute of Nursing Research (NINR), 26, 378 National Institute of Mental Health, 353 National Institutes of Health (NIH), 17, 265 n.24, 351-352, 353, 355, 356 National Pediatric Trauma Registry, 69 Nausea and vomiting, 146 Nebraska, 254 Necrotizing enterocolitis, 55 Neonatal intensive care units (NICUs), 71, 94, 99, 113, 206, 207, 208, 209-210, 217 Neonatal Research Network, 357 Neonates defined, 32 diagnosis-related groups (DRGs), 270 drug studies, 353 pain management in, 362 resuscitation, 277 site of death, 68-69 Neoplasms. See Cancer Neurodegenerative disorders, 38, 69, 92, 98-99, 125, 144-145, 261, 287, 298 Newborn sepsis, 44, 55 New Hampshire, 254 New Jersey, 277 New York, 259 Non-Hodgkin’s lymphoma, 61 North Carolina, 256, 270 Northwestern Memorial Hospital, 219 n.10 Nurse practitioners, 196, 275, 279, 281 Nurses, 113, 135, 159, 197-198, 202, 209, 211, 216, 224, 258, 273, 297, 329, 338, 346, 347 Nursing homes, 68, 266 O Office of Pediatric Therapeutics, 353 Office of Personnel Management, 241 Oklahoma, 254, 277-278 Omnibus Budget Reconciliation Act of 1990, 254 Oncology wards, as site of death, 68 On-Lok Senior Health Services, 25, 183 Open Society Institute, 24, 26, 89 n.2, 228, 354 Oregon, 185, 307, 318 Organ donation, 37, 101, 125, 167, 345, 369 Organ and bone marrow transplants, 38, 69-70, 96, 112, 130 P Pain. See also Symptoms and symptom management assessment and management, 5, 22, 26, 102, 114, 143, 144-145, 148-149, 185-186, 199, 208, 226, 289, 331, 335, 361-362, 364 cancer, 90, 91, 92, 94, 97, 144, 145, 185-187, 208 dimensions of, 146, 154-155 drug interventions, 142, 245 n.6 home care, 88 n.1 neurodegenerative disorders, 92 parental assessment of, 93-94 perception in infants and children, 90, 94-95, 207, 331, 362 practice guidelines and protocols, 9, 145, 185-186, 226, 228, 229-230 psychological interventions, 94, 145, 199, 365-366 recommendations, 9, 229-230, 331, 361-362, 364, 365-366 research strategy, 18, 26, 331, 361-362, 364, 365-366 strategy of pain control advocates, 228 treatment- and procedure-related, 8, 94, 144, 295, 363 World Health Organization (WHO) guidelines, 90, 94 Palliative Care Assessment Tool, 340 Palliative care for children. See also Emotional and psychological care; Financing of care; Physical care; Recommendations; Symptoms and symptom management access to, 5-6, 7, 12, 64, 133, 139, 168, 170, 202, 204, 207-210, 215, 238, 260, 291 accountability and quality, 181-187 adequacy of, 21-24, 88-102 adult care compared, 3, 4-7, 21, 35

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barriers to considering, 85, 102-103, 131-133, 139 bereavement care integrated with, 13, 210, 225, 226, 290-292 clinical trials, 197, 222 consultative services, 10, 95, 102, 129, 209, 210, 232, 248, 290 defined, 2, 33-34 demonstration projects, 25, 183, 215, 252-253, 259, 291, 354 education in, 216, 328-329, 333, 334, 335, 337, 345-346 elements and essential characteristics of, 8, 20, 70-71, 75, 89, 105, 141, 209-210, 293, 331 goal setting at diagnosis, 3, 75, 127-129 information resources, 89 in home, 211, 214-215 inpatient, 207-210, 212-213, 271-273 integration with life-prolonging and curative care, 2, 3, 13, 33, 37, 73, 85-88, 127-129, 127-129, 134-138, 142, 290-291 managed care and, 283-285 payment for, 2, 271-273, 281-282, 283-285, 291 by physicians, 95, 195-197, 281-282 planning, 134-140 potential beneficiaries of, 48 practice guidelines and protocols, 8-9, 10, 71, 75, 184-187, 229-230 quality improvement projects, 183-184 for rare, fatal disorders, 6, 22, 70-71, 82-84 recommendations, 103, 291-292 working principles, 7, 28-31 Paralyzing agents, extubation and, 150, n.1 298 Parental notification laws, 324 Parent–clinician conflict resolution. See also Communication; Legal issues consensus building techniques, 309, 310, 312 counseling and consultation, 15, 309-310 due process approach, 313 ethics committees and, 126-127, 293, 312-314 individual-level strategies, 14-15, 308, 309-311 involvement of new parties, 309 knowledge base for decisionmaking and, 312, 314, 316-317 litigation and legislation, 294, 311, 314, 317-318 organization- or system-level strategies, 14-15, 308, 312-318 practice guidelines and protocols and, 15, 184, 309, 314-315 Parents. See also Families absorption of information, 114, 119, 126, 377 abusive, 59, 174, 294, 321 authority to make treatment decisions, 10, 130, 134, 190, 216, 295, 296, 325 clinicians obligations to, 304 communication with, 2, 10, 15, 114-120, 123-125, 150, 159-160 conflicts with children over care, 79-81, 323-325 emotional and psychological care for, 88, 154, 159-160, 258 as experts on child’s comfort, 93-94, 145, 148, 159-160 insistence on treatment for a child, 98, 321-322 mourning differences, 160 refusal of treatment for a child, 295, 319-321 as teachers, 345, 383 Pateau syndrome, 54 Patent ductus arteriosis, 54 Pathways of care, 85-88 Pathways of dying and bereavement care, 154, 171-175 defined, 38 dimensions of care, 88-102 good vs. bad care, 40, 84-85, 95, 132 illustrative stories, 76-85 trajectories, 72, 73-76 Payment/reimbursement for health care services. See also Financing of care; Health insurance coverage; Managed care and access to care, 260, 265-267, 268 capitation, withholds, and bonuses, 267, 274-275, 285, 289 claims administration, 12, 279-281, 285, 292 Common Procedural Coding System (HCPCS), 278 n.35

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cost-based, 267 Current Procedural Terminology (CPT) codes, 277, 278-279 diagnosis-related groups, 14, 266, 267, 268, 269-271, 272, 292, 380-381 fee-for-service basis, 275 global (bundled), 274 for home care, 281, 381 for hospice care, 12-13, 272, 281, 282-283, 289-290 hospitals, 267-273, 288, 292 levels of, 12, 276-278, 279, 280-281, 282, 285, 288 managed care plans, 193, 283-286 outlier mechanism, 13, 268 n.26, 289 for palliative and end-of-life care, 281-282 pediatricians, 276-281 physicians and other professionals, 13, 193, 273-282, 288, 290, 292 procedure codes and coverage policies, 274, 276, 278-279, 280, 291-292, 380-381 prospective payment system, 266-267, 381 and quality of care, 193, 266-267, 269 recommendations, 13-14, 291-292 research directions, 380-381 resource-based relative value scale (RBRVS), 14, 274, 276, 380-381 for respite care, 272 Pediatric Advanced Illness Care Coordination (PAICC) program, 193-195, 354, 377 Pediatric care teams bereavement care by, 5, 178-179, 230 communication skills, 100, 110, 115 education in teamwork, 203, 340, 342 effectiveness, 203 ethical care by, 304 family conferences, 309, 311 goals, 201 hospice relationship with, 217 interdisciplinary, 377-378 research directions, 202-203, 377-378 responsibilities of members of, 135-138 spiritual support from, 163 support of family, 75, 139-140 types and composition, 201-203, 209 Pediatric Chaplains Network (PCN), 165 Pediatricians attitudes toward pediatric death and dying, 100 communicating bad news, 100, 101 education in end-of-life issues, 330-331, 342-343 life-support decisions, 98, 298 n.6 as palliative care providers, 90, 195-196 payment/reimbursement problems, 276-281 Pediatric intensive care units (PICUs) communication with parents and children, 101, 159-160 hospice relationship with, 217 life-sustaining treatment decisions, 97 pain management in, 92-93, 208 as site of death, 68, 69, 70, 71, 206 Pennsylvania, 277 Perinatal period deaths in, 44-45 research directions, 366-368 Persistent vegetative state, 321-322 Personal care services, 255, 261 Pharmicists, 337 Philanthropy, 264 Physical care after death, 151-153 dimensions, 142-143 of family caregivers, 143 imminence of death and, 148-151 life support technologies, 149-151 parents’ role in comfort management, 145, 148 symptom management, 143-145, 148-149 Physician Orders for Life-Sustaining Treatment (POLST), 185 Physicians. See also Pediatricians acceptance of poor prognosis, 101-102, 115, 129 attitudes about life-sustaining interventions, 99, 297-298, 307-308 bereavement support from, 178-179 communicating bad news, 99-103, 105, 113-125 end-of-life care by, 95, 101-102 Medicaid patients, 253, 277-278, 288 palliative care by, 95, 195-197, 281-282, 290 payment/reimbursement methods, 13, 253, 273-275, 288, 290

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pediatric subspecialists, 196-197, 340, 343 responsibilities of, 135-138 Placenta, cord, and membranes, deaths related to complications of, 5, 49, 44, 46 Pneumonia and influenza, 43, 44-45, 50, 55 Posttraumatic stress disorder, 174-175, 176, 363, 372-373 Practical dimensions of care after death, 125, 168 employee assistance programs, 170 examples, 169 friends and faith communities as providers, 170, 171 health insurance coverage, 167-168, 170 hospice services, 170 personal care services, 255 prognosis and, 111 respite care, 154, 156, 170, 171 school arrangements, 170 socioeconomic status and, 168, 170 Practice guidelines and protocols, 8-9, 10, 15, 71, 75, 90, 94, 124, 145, 174, 184-187, 214, 226, 228, 229-230, 309, 314-315 Preferred provider organizations, 245 Pregnancy, complications of, 5, 44, 46 Prematurity/low birth weight, 37, 38, 42, 43, 44, 46, 50, 52 causes of death, 55 and congenital anomalies, 54 ethnocultural differences, 65, 71 mortality rates, 5, 55, 65 and pain management, 94-95, 207 telemedicine applications for, 227 trajectory of dying, 75 treatment decisions in extreme cases, 75, 326-327 Premera Blue Cross, 247-248 Prepaid health plans, 251 n.13 Prescription drugs closed formulary, 257 coverage and financing of, 244-246, 256-257, 265 investigational, 265 metabolism of, 245 n.6 monitoring safety and quality of care, 257 orphan drugs, 353 pharmacy benefit managers, 245 symptom and pain management with, 142, 186, 364 testing in children, 22, 26, 351-352, 389-390 therapeutic substitution policies, 245-246 Primary care case management providers, 251 n.13 Prognosis communication of, 4-5, 75, 110-113, 118 importance of information on, 110-111 parent vs. physician understanding of, 101-102, 111 reevaluation of, 110 statistical models, 113 uncertainty in, 111-113 Program of All-Inclusive Care for the Elderly (PACE), 25, 183 Programs for All-Inclusive Care for Children and Their Families, 25, 259 Project on Death in America, 89 n.2, 228. See also Open Society Institute Protocols and standards, 8-9, 184-187, 200, 226, 228, 229-230. See also Practice guidelines and protocols Psychotherapy. See Emotional and psychological care; Mental health services Q Quality of care defined, 182 directions for professionals and institutions, 8-11, 227-233 general concepts, 181-183 improvement strategies, 24-26, 182-184, 228, 375 n.5, 378 n.6 measuring and monitoring, 182, 267, 269, 287 outcome measures, 182, 194 payment reimbursement methods and, 193, 266-267, 286 plan-do-study (or check)-act cycle, 182-183 practice guidelines and protocols, 8-9, 184-187, 229-230 Quality of dying defined, 39 measuring, 39

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Quality of life, 38 and decisions about care, 72, 144, 295, 300-301, 316 defined, 39 of family members, 360 in long-term residential care facilities, 221-222 measuring, 39, 359-360, 376 and pain management, 91-92 research directions, 359-361 R Rachischisis, 54 Rae, Susan, 161, 177 Rare conditions diagnosis, 22, 108 in infants, 70-71 palliative care for, 6, 22, 70-71, 82-84 prognostic uncertainty, 112 treatment options and goal setting, 127 Recommendations bereavement care, 11, 230-231, 291 communication skills, 138-139 coordination and continuity of care, 9-10, 231-232 delivery of care, 229-232, 373-379 education of health professionals, 15-16, 233, 348-349 hospice benefits, 289-290 financing of palliative and bereavement care, 12-13, 290-291 payment-related classification schemes, 13-14, 291-292 practice guidelines and administrative protocols, 8-9, 229-230 regional support for small communities, 232-233 Regence Blue Shield, 247-248 Regional differences in homicides, 62-63 in mortality rates, 62-63 in site of death, 68 Religious conviction and insistence on treatment, 322 and refusal of treatment, 319-320, 324 Research in pediatric care agenda, 17-18, 357-358 bereavement care, 176, 366-368, 370-373, 382 center- and network-focused strategy, 17, 356-357 challenges of, 358-359, 361, 385-386 communications, 229-230, 376-377 by comprehensive cancer centers, 355-356 data collection, 17, 355, 360-361, 374 demonstration projects, 25, 183, 215, 252-253, 259, 291, 354 educating health professionals, 26, 348-349, 382-385 emergency medical services, 352, 353-354, 368-370 ethical and legal issues in, 295 n.1, 351, 386-390 federally funded, 352-354, 379, 387-389 financing palliative and end-of-life care, 26, 291-292, 379-382 initiatives to encourage, 351-355 institutional review boards (IRBs), 387, 388, 389, 390 methodological issues, 358-359, 360-361, 385 models of care delivery, 373-379 pain management, 18, 361-362, 364, 365-366 palliative and end-of-life care, 183, 215, 252-253, 259, 291, 350, 353-355, 356-357, 385-386 payment and coding systems, 380-381 on pediatric care teams, 202-203, 377-378 perinatal death, 366-368 prescription drugs, 26, 352-353, 389-390 privately funded, 26, 354-355, 389-390 quality of life for children and families, 359-361 recommended directions in, 355-385 resuscitation termination, 368-370 sudden and unexpected death, 368-370, 372-373 symptom assessment and management, 361-366 Residential care hospice services, 170, 220-221 long-term care facilities, 221-222 Resource and logistic review and evaluation, 137 Respiratory distress syndrome, 5, 44, 46, 52, 55

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Respite care, 154, 156, 170, 171, 220-221, 241, 247, 258, 263, 272 Resuscitation, 75-76, 100, 124, 130, 135, 151, 296, 298, 299, 300, 305, 316-317, 322, 334, 368-369 Rheingold, Susan, 141 Rhode Island, 62, 277 Robert Wood Johnson Foundation, 26, 89 n.2, 228, 247, 272 n.30, 340, 354 Ronald McDonald Houses, 171 Rousar-Thompson, Peg, 175 S Safety net providers, 12, 77-78, 206, 238, 263-264, 267, 268 San Diego Hospice, 220 Sarcomas, 61, 79-81 Schools and schooling bereavement support, 177-178, 223 and DNR orders, 294, 299-300 emotional and psychological considerations, 156 hospital teachers, 200 medical services in, 198, 222-223 practical assistance for families, 170, 198 preparation of classmates, 155, 156, 222-223 reentry considerations for adolescents, 79-80 siblings and, 177-178, 223 special education services, 170 n.4 Sedation controversy, 149, 301, 364 Seizures and convulsions, 144-145, 146 Septicemia, 44-45 Siblings bereavement care, 177-178 burdens on, 72, 85, 223 camps for, 223 communication with, 178 emotional and psychological care for, 64, 161-162, 199, 258 Sickle cell anemia, 48 Skin problems, 147 Smith, Thomas J., 234 Social Security Act Title XIX, 249 Title XXI, 260 Social Security Administration, 262 Social workers, 108, 113, 124, 199, 238, 246, 258, 273, 275, 315, 337, 338, 344. See also Supportive care Society for Bioethics Consultation (SBC), 314 Society for Health and Human Values (SHHV), 314 Socioeconomic differences in access to care, 6, 168, 170 and information resources, 110 in mortality rates, 64-66, 71 Soros, 354. See also Open Society Institute South Carolina, 62, 256 South Dakota, 254 Spina bifida, 54 Spinal muscular atrophy, 69 Spiritual care «anointing of the sick,»162, 166 assessment of needs, 167 for children, 136, 164-166 dimensions, 162-167 education in, 337, 338, 346 ethical considerations, 165-166 for families, 136-137, 166-167, 173 «life review,»166 standards for, 186, 200 SSM Cardinal Glennon Children’s Hospital, 354 Standardized patients or parents, 345, 383 Stanford University Medical Center, 346, 354 Starlight Children’s Foundation, 154 State Children’s Health Insurance Program (SCHIP), 236, 238, 260, 275, 278 Stepanek, Matthew, 155, 164-165 Stillbirth, 50, 51 Sudden infant death syndrome (SIDS), 4, 5, 43, 44, 46, 50, 52, 55-56, 68, 71, 72, 173-174, 317, 385 Suicides, 44-45, 46, 59, 60, 61, 63, 66 Supplemental Security Income (SSI), 262, 286 Supportive care common goals and examples, 125, 128 from faith communities, 170, 171 families’ support networks, 75, 139-140, 158-159, 162 from health care professionals, 34-35, 96 n.1, 102 in schools, 222-223 in support groups, 167, 173, 223

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Symptoms and symptom management. See also Pain assessment, 5, 93, 135, 136, 148-149, 363 barriers to, 256-257 communications and, 143-144, 150 complementary medicine, 365-366 emotional, 91-92, 363 impact of control, 365 insurance coverage, 243-244 life support technologies and, 149-151, 363 management, 5, 98, 102, 135, 142, 186-187, 214, 364 measurement, 363 physical, 144-145, 146-147 prevalence and intensity in children and families, 363 psychological, 363, 364 reevaluation when death is imminent, 148-149 research directions, 361-366, 384-385 treatment- and procedure-related, 145 T Tay-Sachs disease, 54, 299 Telemedicine, 10, 110, 214, 226-227, 233, 244, 256, 379 Texas, 237 Title V Maternal and Child Health Block Grants, 168, 236, 256, 261-262, 286, 287 Toddler, defined, 32 Total Quality Management (TQM), 182 Training of family caregivers, 143 Transfer and follow-up procedures, 188 Treatment decisionmaking and goal setting. See also Parent–clinician conflict resolution acute vs. chronic conditions, 96-97 adolescents, 79-81, 139, 157, 295, 296, 318, 323-325 advance care planning, 6, 87, 127, 129-133 Baby Doe regulations and, 99, 316, 326-327 child patient’s involvement in, 10-11, 79-81, 123, 130, 133-134, 138-139, 155, 157, 190-191, 294, 296, 318, 323-324, 376-377 considerations in establishing goals, 3, 125-127, 136 cultural and religious sensitivity, 127, 132, 133-134, 138, 296, 302 curative treatments, 300 at diagnosis time, 127-129 about end-of-life care, 126, 129-131, 138-139 experimental treatment, 134, 296 financial considerations, 295, 301-302, 382 implementing plans, 139 insistence on treatment, 305-306, 316, 321-322 integrating palliative care, 3, 85-88, 127-129 knowledge base for, 316-317 legal considerations, 99, 130-131, 134, 319-322 life-sustaining treatment, 96-98, 127, 150-151, 298-300, 303 in long-term residential care facilities, 221 protocols for, 8-9, 185-186, 314-315 quality-of-life considerations, 72, 144, 295, 300-301, 316 recommendations, 10-11, 138-139 reevaluation of goals, 8, 86-87, 101-102, 129, 137, 148-149 refusal of treatment, 316, 319-321, 324-325 resource considerations, 98-99, 301-302, 305, 306, 311, 315 supporting the family, 139-140 withdrawal of treatment, 93, 131, 296-297, 326-327 Trisomy, 54 Tuberculosis, 43 U Unintentional injuries adolescents’ deaths from, 44-45, 60-61 children’s deaths from, 43, 44, 46, 56, 57, 78-79 infants’ deaths from, 49, 50, 52 United Way, 264 University of California, San Francisco Children’s Hospital, 354 University of Kansas, 227

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University of Texas Health Sciences Center, 193 Medical Branch at Galveston, 210 University of Washington, 248 Utah, 62-63, 259 V Vanderbilt Children’s Hospital, 354 Vermont, 237 Virginia, 259 Volunteer funding and services, 264 Von Gunten, Charles, 219 n.10 W Washington, 68, 205, 237, 247-248 Weil, Kelly, 155, 223 West Virginia, 237, 325 Williamson-Noble, Esmeralda, 72, 123 Wisconsin, 260 Wish granting programs, 154 Wooten, Becky, 88, 204, 211 Wordsworth, William, 41 World Health Organization, 33 n.2, 90, 228 World Medical Association, 386-387 Wyoming, 62, 251 Z Zink the Zebra program, 155, 156, 223