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From page 671... ... 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, 183184, 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) Read the entire page →
From page 672... ... 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, 370373 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. Read the entire page →
From page 673... ... . envy vement In treatment decisionmaking, 10-11, 79-81, 123, 130, 133-134, 138-139, 155, 190191, 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, 386390 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. Read the entire page →
From page 674... ... , 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 Read the entire page →
From page 675... ... program, 193-195, 354, 377 recommendations, 9-10, 231-232 and satisfaction with care, 189 sourcebook on model programs, 183184 Critical incident stress management, 369370 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 ages 1 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. Read the entire page →
From page 676... ... 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, 344347, 383 on quality assessment and improvement, 340 recommendations, 15-16, 233, 348-349 research directions for, 348-349, 382385 INDEX 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, 334335 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. Read the entire page →
From page 677... ... See also Chaplains/pastoral counselors; Spiritual care Families bereavement support groups, 109, 167, 173, 176 burdens on, 6, 22-23, 72, 82-84, 139140, 143, 187-188, 211, 247, 262263, 268-269, 279, 288, 306 defined, 33 emotional care for, 107-108, 136-137, 139-140, 154, 158-162, 172, 369370 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) Read the entire page →
From page 678... ... 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, 246247, 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, 247248, 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, 255256, 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, 1213, 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, 379382 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, 261262, 286, 287 Florida, 227, 257, 259 Food and Drug Administration (FDA) , 246 n.7, 351-352, 389-390 INDEX 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) Read the entire page →
From page 679... ... , 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, 215 679 financing of, 214, 241-244, 255-256, 266, 290, 381 frequency, duration, and type of services, 214 hospice services, 69, 97-98, 132, 197198, 204, 210, 211, 214-220, 240241, 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, 289290 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, 197198, 204, 210, 211, 214-220, 240241, 248, 254-255, 281, 335 inpatient programs, 98, 207-210 . Read the entire page →
From page 680... ... . Insurance coverage, private; Medicaid/Medicare coverage; Payment/reimbursement for health care Intentional injuries. Read the entire page →
From page 681... ... 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 Read the entire page →
From page 682... ... , 251 -252 telemedicine services, 226 Medical examiner, 167 <> 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 INDEX 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 cI7ildI7ood 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) Read the entire page →
From page 683... ... 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, 361362, 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. Read the entire page →
From page 684... ... 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, 114120, 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. Read the entire page →
From page 685... ... 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) , 165 685 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, 276281 Pediatric intensive care units (PICUs) Read the entire page →
From page 686... ... 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) Read the entire page →
From page 687... ... INDEX 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, 910, 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, 370373, 382 687 center- and network-focused strategy, 17, 356-357 challenges of, 358-359, 361, 385-386 communications, 229-230, 376-377 by comprehensive cancer centers, 355356 data collection, 17, 355, 360-361, 374 demonstration projects, 25, 183, 215, 252-253, 259, 291, 354 educating health professionals, 26, 348349, 382-385 emergency medical services, 352, 353354, 368-370 ethical and legal issues in, 295 nil, 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, 360361, 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, 377378 perinatal death, 366-368 prescription drugs, 26, 352-353, 389390 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 Read the entire page →
From page 688... ... , 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 Read the entire page →
From page 689... ... , 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. Read the entire page →
From page 690... ... 690 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 Well, Kelly, 155, 223 INDEX 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, 386-38 Wyoming, 62, 251 z 7 Zink the Zebra program, 155, 156, 223 Read the entire page →

From page 671...

... 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, 183184, 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)

Index Pages 671-690

Index
Pages 671-690