Index

A

ABTC. See American Board for Transplant Certification

Acceptable appeals, for organ donation, 3, 79, 8485

Access.

See also Preferential access to donated organs

to immunosuppressive medications following transplantation, 95

Accreditation, 99

American Board for Transplant Certification, 99

Association of Organ Procurement Organizations, 99

Centers for Medicare & Medicaid Services, 99

Joint Commission on Accreditation of Healthcare Organizations, 99

Organ Procurement and Transplantation Network, 99

ACOT. See Advisory Committee on Transplantation

Actions needed to increase rates of DCDD, 14, 156160, 282

clarification of regulatory and statutory requirements, 158

developing regional infrastructures, 159

ensuring the opportunity for donation, 158

mentoring and evaluation, 158

proposed by the National Conference on Donation after Cardiac Death, 136137

providing excellent emergency and resuscitative care, 157

providing professional education, 157158

providing public education, 157

Actual donors, 25

Ad Council, 188

Adjusted patient survival rate, 59

Advance directives, 23, 115

Advanced cardiac life-support efforts, criteria for termination of, 132

Adverse biopsy results, 47, 50

Adverse selection problem, 256257

Advisory Committee on Transplantation (ACOT), 136, 264, 272

Advocates

for donors, independent, 13, 275, 307

family, 308309

African Americans, 54, 6465, 67, 195196, 198, 301

Agency relationships, 237, 246

AHA. See American Heart Association



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Organ Donation: Opportunities for Action Index A ABTC. See American Board for Transplant Certification Acceptable appeals, for organ donation, 3, 79, 84–85 Access. See also Preferential access to donated organs to immunosuppressive medications following transplantation, 95 Accreditation, 99 American Board for Transplant Certification, 99 Association of Organ Procurement Organizations, 99 Centers for Medicare & Medicaid Services, 99 Joint Commission on Accreditation of Healthcare Organizations, 99 Organ Procurement and Transplantation Network, 99 ACOT. See Advisory Committee on Transplantation Actions needed to increase rates of DCDD, 14, 156–160, 282 clarification of regulatory and statutory requirements, 158 developing regional infrastructures, 159 ensuring the opportunity for donation, 158 mentoring and evaluation, 158 proposed by the National Conference on Donation after Cardiac Death, 136–137 providing excellent emergency and resuscitative care, 157 providing professional education, 157–158 providing public education, 157 Actual donors, 25 Ad Council, 188 Adjusted patient survival rate, 59 Advance directives, 23, 115 Advanced cardiac life-support efforts, criteria for termination of, 132 Adverse biopsy results, 47, 50 Adverse selection problem, 256–257 Advisory Committee on Transplantation (ACOT), 136, 264, 272 Advocates for donors, independent, 13, 275, 307 family, 308–309 African Americans, 54, 64–65, 67, 195–196, 198, 301 Agency relationships, 237, 246 AHA. See American Heart Association

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Organ Donation: Opportunities for Action Allocating and distributing organs, 95 access to immunosuppressive medications following transplantation, 95 equitable access to transplantation, 95 Allosensitization, 59 Altruism, cultural norms and models of willingness to donate, 70–71 AMA. See American Medical Association American Board for Transplant Certification (ABTC), 99 American Heart Association (AHA), 153–154, 156 American Medical Association (AMA), 197, 214, 225, 250, 257 American Nurses Association, 197 American Society of Transplant Physicians (ASTP), 133 American Society of Transplant Surgeons (ASTS), 33, 188, 249, 252 American Society of Transplantation (AST), 33, 188 AOPO. See Association of Organ Procurement Organizations Appeals. See Acceptable appeals Arguments for and against preferred-access approaches, 254–258 the adverse selection problem, 256–257 the information problem, 256 the unfair allocation problem, 257–258 Arizona, 186, 302 Arkansas, 194 Asian Americans, 65, 196 Asian-Pacific Islanders, 195 Assessment of DCDD strategies in the United States, 141–143 DCDD cases reported by OPOs, 143 deceased donors, 142 organs recovered from DCDD donors in the U.S., 143 Assessment of presumed-consent policies, 212–224 autonomy-based arguments, 218–219 chances of a presumed-consent policy being adopted in the U.S., 222–224 cost-effectiveness, 216 effectiveness in increasing the number of transplantable organs, 212–216 individual generosity, societal generosity, and mutual self-interest, 221–222 justice and fairness, 219–221 possible benefits of and barriers to presumed-consent policies, 223 reducing the burden of familial decision making, 216–218 Association of Organ Procurement Organizations (AOPO), 5, 21, 33, 97, 99, 119, 136 AST. See American Society of Transplantation ASTP. See American Society of Transplant Physicians ASTS. See American Society of Transplant Surgeons Austria, 27 Autonomy-based arguments, 218–219 B Barriers, to a futures market, 234–235 Behavioral interventions, 300–301 Belgium, 27, 217 Brain function, controversy over, 146 Breakthrough collaborative model, 103. See also Organ Donation Breakthrough Collaboratives; Organ Transplantation Breakthrough Collaborative; Transplantation breakthrough collaboratives British Medical Association, 222n Buying and selling of organs, 239–242 advantages of the gift model, 240–241 claims of a liberty right to sell organs, 241–242 C California Transplant Donor Network, 109 Candidates on the transplant waiting list, growth in numbers of, 2, 16 Cannulation, 133, 310. Cardiac arrests, 138, 286–287, 308 Cardiac life-support efforts, criteria for termination of advanced, 132 CDC. See Centers for Disease Control and Prevention CDD. See Circulatory determination of death Centers for Disease Control and Prevention (CDC), 8, 198–199

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Organ Donation: Opportunities for Action Centers for Medicare & Medicaid Services (CMS), 32, 97, 99, 101, 119 Christianity, and deceased organ donation, 66, 193 Circulatory determination of death (CDD), 31, 83, 128. See also Donation after circulatory determination of death Clarification of criteria for determination of death, 18–19 of regulatory and statutory requirements, 158 relevant legislation, 19 of terminology, 4 Clinical Interventions grants program, 300–301 CMS. See Centers for Medicare & Medicaid Services Coalition on Donation, 33, 188–189, 193 Cold preservation techniques, 153 Collaborators and consultants. See also Organ Donation Breakthrough Collaboratives at the Washington Hospital Center, 314 Committee’s charge, 77–78 Commodification, 233–234, 248–249, 255 Community coalitions, 8–9, 199–200 Community education, at the Washington Hospital Center, 154, 313–314 Community grassroots efforts, and minority populations, 195–198 Community Oversight Committee, 137, 308 Community recognition, 229, 253 Competence trustworthiness, 111–112 Confidentiality, of donor registrations, 183 Conflicts of interest, 148–149 Confucianism, and deceased organ donation, 67 Consensus Conference on the Asystolic Trauma Donor, 305 Consensus Conference on Trauma Victims and Organ Donation, 308, 314 Consent. See also First-person consent status; Informed consent; Presumed consent; Voluntary consent varieties of, 175, 209–210 at the Washington Hospital Center, 309–310 Controlled DCDD in the U.S., 128 conflicts of interest, 148–149 controversy over brain function, 146 controversy over irreversibility, 145–146 controversy over premortem interventions, 146–147 end-of-life care, 147 family interests and consent, 149–150 myths and misperceptions about, 151 withdrawal of treatment, 147–148 Controlled death, defining, 129–131 Conversion rates, among member hospitals, 105 Cost-effectiveness issues, 35, 90, 165, 216 Council on Ethical and Judicial Affairs, 214–215, 225 CPR (cardiopulmonary resuscitation), 152, 154–156 Cultural issues, 28–29, 71 D DCD. See National Conference on Donation after Cardiac Death DCDD. See Donation after circulatory determination of death Dead bodies, commodification of, 233–234, 248–249 Dead donor rule, 112 Death, defining controlled, 129–131 Deceased organ donation, 22–25 incentives for, 229–262 process of organ donation, 24 religion and, 66–67 Deceased organ donors, 51, 142 eligible, actual, and additional, 25 increase in number of, 105 numbers of, 28 Decedents’ wishes, respect for, 87 “Decision: Donation” packet, 194 Decision making surrogate, 116 training in, 117–119 Decisions to donate. See Facilitation of individual and family decisions to donate Demand side of an organ market, 236–239 Demographics, 62–63 in family decision making, 63 in individual decision making, 62–63 Demonstration projects, 118, 160, 168 Denmark, 27, 29 Departments of motor vehicles, 9, 184, 185

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Organ Donation: Opportunities for Action Determination of death, 128–131 defining controlled and uncontrolled death, 129–131 Maastricht categories, 129 DHHS. See U.S. Department of Health and Human Services Dispositional authority, 211 Distribution of organs. See Allocating and distributing organs Division of Transplantation (DoT), 20, 31–32, 189, 304 DNDD. See Donation after neurologic determination of death Documention of decisions to donate, 183–187 additional opportunities to document donation decisions, 187 donor cards, 184–185 donor registries, 185–187 driver’s license registration, 184 Donate Life Organization, 188–189 Donation after circulatory determination of death (DCDD), 6–7, 31, 100, 127–161, 165–168, 281–282 cases reported by OPOs, 143 Donation after neurologic determination of death (DNDD), 31, 128, 141–142 Donation rates, 27, 100, 249–252. See also Expansion of the population of potential donors comparing, 27 increasing, 288 Donation service areas (DSAs), 97 Donor advocates, independent, 275, 307 Donor cards, 184–185 Donor choice issues, 182–183 communicating decisions to family, 182 confidentiality of donor registrations, 183 honoring donor consent, 182–183 informed choice, 182 Donor hospitals, 6, 168 Donor registries, 185–187 confidentiality of, 183 Donor Sabbath, 187 Donor service areas, 21 Donors. See also Actual donors; Additional donors; Deceased organ donors; Eligible donors; Living donors; Organ donors; Potential donors altruism, cultural norms, and models of willingness to donate, 70–71 demographics, 62–63 ethnicity, 64–65 family discussions regarding organ donation, 68–69 financial costs to, 270 individual and family decisions, 62–71 quality of health care and trust in the healthcare system, 69–70 spirituality, 65–68 Donor’s loss, 232 DoT. See Division of Transplantation Driver’s license registration, 184, 194 DSAs. See Donation service areas Durable powers of attorney, 116 E Economic considerations, 159–160, 286 Economic value of increasing the organ supply, 33–35 Education. See Public education; Training Effectiveness of the healthcare system, 94 in increasing the number of transplantable organs, 212–216 Efficiency, of the healthcare system, 94 Eligible donors, 25 Emergency medical services (EMS), 154–155, 159–160 End-of-life care, 23, 87, 115–117, 147 communication and decision making in, 117–119 End-of-life communication, training in, 117–119 End-stage renal disease (ESRD), 53, 98 End-Stage Renal Disease program, 220n, 246 Equipment. See Facilities and equipment Equitability of access to transplantation, 95 of the healthcare system, 94 ESRD. See End-stage renal disease Ethical considerations, 28–29, 143–154 for expanded-criteria organ donation, 165 Ethical considerations in living donation, 12–13, 263–279 background, 264–268 donations, not sales, 273–274 independent donor advocates, 13, 275, 307 informed consent, 270–272

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Organ Donation: Opportunities for Action living donor follow-up, 276 next steps, 274–276 other ethical considerations, 270–274 recommendation concerning facilitating living donor follow-up, 13, 277 recommendation concerning protecting living donors, 13, 276–277 relationships between living donors and recipients, 265–266 risk-benefit ratios, 268–270 voluntary consent, 272–273 Ethical issues pertinent to controlled DCDD myths and misperceptions about, 151 in the U.S., 145–150 Ethical issues pertinent to uncontrolled DCDD, 150–154 informed consent, 153–154 myths and misperceptions about, 152 resuscitation, 150–153 Ethnicity, 64–65. See also individual racial and ethnic groups donors, transplants, and waiting list by, 50 family decision making, 65 individual decision making, 64–65 Europe, 138–140, 305 European Resuscitation Council, 153 Eurotransplant International Foundation, 27 Evaluation, 158 of HRSA’s extramural research grants, 303–304 of proposed changes, criteria for, 90–91 Evolution of the request process, 106–110 formulation of the request, 107 requesters, 108–110 timing of requests, 107–108 Excellence, in emergency and resuscitative care, 157 Expanded criteria for organ donation, 160–167 ethical considerations for expanded-criteria organ donation, 165 next steps for expanded criteria, 166–167 organ quality, 166 organ screening, 167 targeted research needs, 166–167 UNOS definition of expanded-criteria kidney donors, 162 Expansion of the population of potential donors, 6–7, 39, 127–173 actions needed to increase rates of DCDD, 157–159 assessment of DCDD strategies in the United States, 141–143 background and issues, 128–140 common criteria for termination of advanced cardiac life-support efforts, 132 demonstration projects, 160 determination of death, 128–131 economic considerations, 159–160 encouraging and funding DCDD demonstration projects, 7, 168 expanded criteria for organ donation, 160–167 general considerations, 131–133 general ethical considerations, 143–154 implementing initiatives to increase rates of donation after circulatory determination of death, 6–7, 168 increasing research on organ quality and enhanced organ viability, 7, 168 learning from past experience and international models, 136–140 next steps for DCDD, 156–160 prior reports and recommendations, 133–136 recommendation concerning maintaining opportunities for organ donation, 6–7, 167–168 reexamination of uncontrolled DCDD, 154–156 Expected donations, 107, 111, 216 Explicit consent, 28 Extramural research program, 299–304 clinical interventions, 301 grant summary, 301–303 media-based interventions, 301 overview of HRSA’s extramural research program, 299–303 social and behavioral interventions, 300–301 F Facilitation of individual and family decisions to donate, 7–9, 39, 175–203 additional opportunities to document donation decisions, 187 donor cards, 184–185 donor registries, 9, 185–187, 200 driver’s license registration, 184

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Organ Donation: Opportunities for Action framework for informed choice, 176–177 mandated choice, 177–181 opportunities for people to record their decision to donate, 9, 181–187, 200 public education, 187–199 public understanding of and support for organ donation, 8–9, 199 recommendations, 199–200 voluntary choice, 181–187 Fairness, 3, 79, 89–90, 219–221 Faith-based organizations, 8, 199 False-negative and -positive responses, 218–219 Familial decision making, 63, 65 discussions regarding organ donation, 68–69 family interests and consent, 149–150 reducing the burden of, 216–218 Families, respect for, 88–89 Family advocates, 308–309 Financial costs, to donors, 270 Financial incentives within a donation framework, 149, 247–252 the commodification issue, 248–249 impact on donation rates, 249–252 payments to families for funeral expenses, 249–250 payments to register, 250–251 pilot studies, 251–252 Finland, 27 First-person consent status, and organ donor registry participation, 289–292 First steps, 113–119, 274–276. See also Actions needed to increase rates of DCDD enhancing training in end-of-life communication and decision making, 117–119 for expanded criteria, 166–167 facilitating and documenting decisions to donate, 183–187 integrating organ donation and end-of-life care, 114–117 for public education, 198–199 regarding mandated choice, 180–181 sustaining continuous quality improvement, 113–114 Florida, 206 Florida v. Powell, 206–207 Formulation of requests, 107 Framework for informed choice, 176–177 of trust, 110–113 France, 26 Free market in organs demand side of an organ market, 236–239 problems with, 231–239 supply side of an organ market, 232–236 G Gender disparities, 273 Georgia, 207, 251 Germany, 27, 29 Gift model, 12 advantages of, 240–241 Gift of Life initiatives, 32, 69 Grant summary, 301–303 Grassroots efforts, and minority populations, 195–198 Green screen, 95, 237 Greenwall Foundation, The, 3, 17 Growth in numbers of transplants and in numbers of candidates on the transplant waiting list, 2, 16 of the transplantation field, 20–22 H Haddon matrix, 36 Health Care Financing Administration (HCFA), 101 Health Resources and Services Administration (HRSA), 3–9, 13, 17, 102–103, 120, 141, 176, 189, 198–200, 236, 264, 299–304 evaluating HRSA’s extramural research grants, 303–304 extramural research program, 299–304 Healthcare professionals. See also Professional societies enhancing training for, 6, 120 Heart and heart-lung, 57–59 adjusted patient survival rate, 59 Hemodialysis, 53 Hinduism, and deceased organ donation, 67 Hispanics, 64, 195, 197, 301 History clarifying criteria for determination of death, 18–19

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Organ Donation: Opportunities for Action and context, 230–231 of the current U.S. system, 18, 230, 293 deceased organ donation, 22–25 growth and organization of the transplantation field, 20–22 illicit markets for bodies in, 233 transplant recipients, 25–26 HLA. See Human leukocyte antigen matching Hollywood, Health & Society, 189 Honoring donor consent, 182–183 Hospital Clinico San Carlos (Madrid), 138–140 Hospitals, 104, 109, 160, 198–199, 304. See also Donor hospitals HRSA. See Health Resources and Services Administration Human dignity, respect for, 86 Human leukocyte antigen (HLA) matching, 54–55, 59 Human remains, respect for, 88 I Iceland, 27 ICUs. See Intensive care units IHI. See Institute for Healthcare Improvement Illicit markets for bodies, 233 Immunosuppressive therapies, 51 Improvement aims for the healthcare system, 93–94 effectiveness, 94 efficiency, 94 equitability, 94 patient centeredness, 94 safety, 93 timeliness, 94 Incentives for deceased donation, 10–12, 39, 229–262, 285 financial incentives within a donation framework, 247–252, 286 history and context, 230–231 nonfinancial incentives, 253–258 payments as a token of gratitude, 252–253 preferential access to donated organs, 253–258 recommendation concerning financial incentives, 12, 259 recommendation concerning preferential access, 12, 259 recommendations, 258–259 regulated commerce in organs, 239–247 why a free market in organs is problematic, 231–239 Independent donor advocates, 13, 275, 307 Individual autonomy, 179–180 Individual decision making, 62–65, 286 Individual generosity, 221–222 Information problem, 256 Informed choice, 182 Informed consent, 153–154, 270–272 robust, 271 Innovative system changes, increasing research on, 5, 120 Institute for Healthcare Improvement (IHI), 103 Institute of Medicine (IOM), 3, 17, 93–95, 115, 127, 143, 289 Integrated approaches, 115 Integration of organ donation and end-of-life care, 114–117 emphasis on patient and family relationships, 116–117 use of interdisciplinary healthcare teams, 117 Intensive care units (ICUs), 100 donor protocol (controlled donors) in, 307–308 Interdisciplinary healthcare teams, 112, 117 Interdisciplinary training, 118 Intermountain Donor Services, 69 International models, learning from, 136–140 International perspective, 26–29, 285 comparing rates of organ donation, 27 ethical, social, and cultural issues, 28–29 numbers of deceased donors, 28 Intestine, 61–62 IOM. See Institute of Medicine Iowa, 194 Ireland, 27 Irreversibility, controversy over, 145–146 Islam, and deceased organ donation, 66 J Japan, 29 JCAHO. See Joint Commission on Accreditation of Healthcare Organizations

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Organ Donation: Opportunities for Action Joint Commission on Accreditation of Healthcare Organizations (JCAHO), 5, 33, 97, 99, 119 Judaism, and deceased organ donation, 66–67 Justice, 212, 219–221 K Kentucky, 188 Kidney transplants, 16, 46, 130 Kidneys, 52–55 living kidney donors, 264, 266 obtained as a result of DCDD, 140 L Latinos, 64, 195–196 Learning from other public health efforts, 189–192 correcting myths and misperceptions, 190–191 public health intervention strategies, 192 Learning from past experience and international models, 136–140 Europe, 138–140 kidneys obtained as a result of DCDD, 140 Modified Madrid Criteria, 139 Washington, D.C., 137–138 Legislation on criteria for determination of death, 19 National Organ Transplant Act, 19 Omnibus Budget Reconciliation Act, 19 Organ Donation and Recovery Improvement Act, 19 Uniform Anatomical Gift Act, 19 Uniform Determination of Death Act, 19 Libertarian argument, 241 Liberty right, to sell organs, claims of, 241–242 Life Gift, 109 Life Point, 109 Life-support efforts, 30, 148 criteria for termination of advanced cardiac, 132 LifeNet, 69 LifeSharers program, 253–254 Line placement techniques, 310–311 Linking organ recovery and distribution, 80 Liver, 55–57, 365 Living donations, 287 ethical considerations in, 263–279 Living donors, 51–52, 269 following-up with, 276 Local governments, 9 Louisiana, 194 Lung, 59–60 Luxembourg, 27 M Maastricht categories, 129, 141, 155 Madrid Criteria. See Modified Madrid Criteria Maine, 194 Mandated choice, 177–181 individual autonomy, 179–180 next steps regarding, 180–181 timing and family involvement, 180 Markets. See also Free market in organs; Organ markets for bodies, illicit, 233 Maryland, 184, 187 Massachusetts, 194, 264 Media, 192–193 print, 246 Media-Based Interventions program, 300–301 Medicaid coverage, 97–98 Medicare coverage, 20, 53, 97–98, 158, 220n, 246 Medlantic Healthcare Group, 306 Medlantic Research Institute (MRI), 305, 313–315 MedSTAR, 305–309, 311, 314 MELD. See Model for End-Stage Liver Disease Mental capacity issues, 219 Mentoring, 158 Minnesota, 194 Minority populations, 2 community grassroots efforts and, 195–198 Misperceptions. See Myths and misperceptions Missouri, 186 Mistaken removals and nonremovals, 219 Model for End-Stage Liver Disease (MELD), 57

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Organ Donation: Opportunities for Action Modified Madrid Criteria, 139, 155–156, 167 Mortality confronting one’s own, 189 postoperative, 35 Motor vehicles departments, 9, 184, 185 MOTTEP See National Minority Organ and Tissue Transplant Education Program MRI. See Medlantic Research Institute Multi-organ transplant, 61 Multistakeholder consensus conferences, 145 Mutual self-interest, 221–222 Myths and misperceptions about controlled DCDD, 151 about uncontrolled DCDD, 152 correcting, 189–191 N Nanotechnology, 37 NATCO. See Organization for Transplant Professionals National Association of Hispanic Nurses, 197 National Black Nurses Association, 197 National Bone Marrow Donor Registry, 299 National Center on Minority Health and Health Disparities, 5, 32, 120, 195n, 197 National Committee for Quality Assurance (NCQA), 5, 119 National Conference on Donation after Cardiac Death (DCD), 136, 146, 150 actions proposed by, 136–137 National Consensus Project Steering Committee, 117 National Donor Family Council, 30 National Hispanic Medical Association, 197 National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK), 32, 195n National Institutes of Health (NIH), 5–8, 32, 120, 168, 195, 198–199 National Kidney Foundation (NKF), 33, 245, 250 National Medical Association, 197 National Minority Organ and Tissue Transplant Education Program (MOTTEP), 32, 189, 195–197 National Organ Transplant Act (NOTA), 19–20, 153, 231, 239, 265, 273 National Survey of Organ Donation, 181–182, 215, 224, 244 Native Americans, 195 NCQA. See National Committee for Quality Assurance NDD. See Neurologic determination of death Nebraska Health System, 117 Nephrectomy, 312 Netherlands, The, 154, 194 Neurologic determination of death (NDD), 29, 31, 70–71, 131, 193. See also Donation after neurologic determination of death Neutral-choice policy, 214 New Jersey, 193, 302 New Mexico, 185, 194 Newman v. Sathyavaglswaran, 88 NHBDs. See Non-heart-beating organ donations NIDDK. See National Institute of Diabetes & Digestive & Kidney Diseases NIH. See National Institutes of Health NKF. See National Kidney Foundation Non-heart-beating organ donations (NHBDs), 152, 305, 313 Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement, 133–134 Non-Heart-Beating Organ Transplantation: Practice and Protocols, 134 Nonfinancial incentives, 253–258 arguments against preferential access, 255–258 arguments for preferred-access approaches, 254–255 Nonprofit organizations, 9, 200 Normative trustworthiness, 112–113 North Carolina, 184 Norway, 27 NOTA. See National Organ Transplant Act O ODA. See Office of Decedent Affairs Office of Community Affairs, 306

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Organ Donation: Opportunities for Action Office of Decedent Affairs (ODA), 306–307, 309, 313 Office of Minority Health Research, 195n Ohio, 194 Omnibus Budget Reconciliation Act, 19 Opinions of healthcare professionals, 245 OPOs. See Organ procurement organizations Opportunities for action, 13–14, 281–282 to document donation decisions, 187 to ensure donations, 158 to increase organ donations, 14, 282 Opt-in approach, 154, 214–215, 280 Opt-out approach, 28, 210, 214 OPTN. See Organ Procurement and Transplantation Network OPTN/UNOS policy, 136–137, 161–164 waiting list under, 47 Organ brokers, 238 Organ Donation and Recovery Improvement Act, 19, 270 Organ Donation Breakthrough Collaboratives, 5, 32, 102, 110, 118–119, 158, 181, 199, 236, 243, 258–259, 288, 301–302 Organ donation systems, 26, 93–125 context of the current U.S. organ donation system, 95–101 conversion rates among member hospitals, 105 framework of trust, 110–113 improvement aims for the healthcare system, 93–94 increase in number of deceased organ donors, 105 initiatives in, 4 issues in allocating and distributing organs, 95 next steps, 113–119 ongoing evolution of the request process, 106–110 organ donation and transplantation breakthrough collaboratives, 101–106 quality improvement in health care, 102 recommendations, 119–120 Organ donations acceptable appeals for, 3, 79, 84–85 decision-making policies, 211 process of, 24, 236, 310–313 and quality end-of-life care practices, 6, 120 statistics and trends, 45–62 Organ Donor Leave Act, 270 Organ donors, 1, 46–52 deceased donors, 51 by donor type, 48 by ethnicity, 50 living donors, 51–52 OPTN/UNOS waiting list, 47 transplants, 49–50 waiting list, 49–50 waiting list additions, 48 Organ exchange organizations, 26 Organ markets buying and selling in, 239–242 demand side of, 236–239 problems with a free market in, 231–239 supply side of, 232–236 Organ Procurement and Transplantation Network (OPTN), 1n, 6, 13, 15–16, 20, 31, 46, 53, 57–61, 99, 136, 168, 238, 265–266, 299 Organ procurement organizations (OPOs), 4–9, 20, 69, 93, 96–100, 141, 160, 168, 198–200, 217, 245, 288, 301, 304 donation rates, 100 Organ recovery from DCDD donors in the U.S., 143 at the Washington Hospital Center, 311–313 Organ Transplantation Breakthrough Collaborative, 106 Organization for Transplant Professionals (NATCO), 33, 188, 250 Organization of the transplantation field, 20–22 donor service areas, 21 Organs, 52–62. See also Organ donation systems heart and heart-lung, 57–59 intestine, 61–62 kidneys, 52–55 liver, 55–57 lung, 59–60 pancreas, 60–61 quality of, 166 screening, 167 types of, 52–62 Out-of-pocket costs, 272

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Organ Donation: Opportunities for Action P Pacific Islanders, 195 Palliative care, 114, 120 Pancreas, 60–61 Past experience, learning from, 136–140 Patient and family relationships, emphasis on, 116–117 Patient centeredness, of the healthcare system, 94 Patient survival rate, adjusted, 59 “Paying for Organs,” 249 Payments to families for funeral expenses, 249–250 to register, 250–251 as a token of gratitude, 252–253 Pediatric End-Stage Liver Disease (PELD), 57 PELD. See Pediatric End-Stage Liver Disease Pennsylvania, 249, 303 Perceptions. See Myths and misperceptions Perfusion catheter, line placement by, 310–311 Peritoneal lavage, line placement by, 310 Persons, respect for, 3 Peter Brent Brigham Hospital (Boston), 264 PHASE. See Pre-Hospital Arrest Survival Evaluation data set Physician’s Orders for Life-Sustaining Treatment, 187 Poor people, risk of exploiting, 255 Potential donors, 308 estimation of, 155–156 expanding the population of, 127–173 issues in expanding the population of, 128–140 Powers of attorney, durable, 116 Pre-Hospital Arrest Survival Evaluation (PHASE) data set, 155 Precedent autonomy, 87 Preferential access to donated organs, 229, 253–258 arguments against, 255–258 arguments for, 254–255 Premortem interventions, 144 controversy over, 146–147 Preservation, 308. See also Cold preservation techniques; Kidney preservation Presumed consent, 9–10, 28, 107, 205–228, 303 recommendations concerning, 226–227 routine removal, 206–208 varieties of consent, 209–210 weak and strong, 210–212 Presumed-consent policies assessment of, 212–224 autonomy-based arguments, 218–219 chances of its being adopted in the U.S., 222–224 cost-effectiveness, 216 effectiveness in increasing the number of transplantable organs, 212–216 individual generosity, societal generosity, and mutual self-interest, 221–222 justice and fairness, 219–221 organ donation decision-making, 211 possible benefits of and barriers to, 223 reducing the burden of familial decision making, 216–218 Prevention emphasis on, 36–37 organ transplantation prevention matrix, 37 Primum non nocere (above all do no harm), 12, 263 Principles, 3, 77–92 acceptable appeals for organ donation, 3, 79, 84–85 the committee’s charge, 77–78 common stake in a trustworthy system, 3, 79–84 criteria for evaluating proposed changes, 90–91 fairness, 3, 79, 89–90 respect for persons, 3, 79, 85–89 Print media campaigns, 246 Prior reports and recommendations, 133–136 actions proposed by the National Conference on Donation after Cardiac Death, 136–137 recommendations of Non-Heart-Beating Organ Transplantation, 134–135 Process, of organ donation, 24, 236, 310–313 Professional education, 157–158 Professional societies, 6, 168 Proposed changes, criteria for evaluating, 90–91

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Organ Donation: Opportunities for Action Protocol for the Rapid Organ Recovery Program, 150 Public education, 135, 157, 179, 187–199 Coalition on Donation, 188 community grassroots efforts and minority populations, 195–198 driver’s license registration, 194 learning from other public health efforts, 189–192 media, 192–193 next steps for public education, 198–199 workplace efforts, 193 youth, 194–195 Public health intervention strategies, 192 learning from previous efforts, 189–192 Public opinion, 243–245 Q Quality improvement in health care, 102 sustaining continuous, 5, 113–114, 119 and trust in the healthcare system, 69–70 Quantifying self-interest in organ donation, 293–297 assumptions, 294–296 notation, 294 risk of being placed on a waiting list, 297 Question of whether payments would actually increase the organ supply, 242–245 opinions of healthcare professionals, 245 public opinion, 243–245 religious group opinion, 245 Question of whether payments would be a cost-effective policy, 245–247 R Race. See Ethnicity; individual racial and ethnic groups Rapid Organ Recovery Program, 306, 313 protocol for, 150 Rapid organ recovery program transplantation services consent, 309–310 design and methods for, 306–313 donor criteria, 306–307 fatal trauma victim protocol (uncontrolled donors) in, 308 kidney preservation, 313 line placement technique, 310–311 Rates. See Donation rates; Expansion of the population of potential donors Reciprocity model, 12, 80–81, 254–255, 257 Recommendations, 119–120, 199–200, 226–227, 258–259, 276–277 encouraging and funding DCDD demonstration projects, 7, 168 enhancing donor registries, 9, 200 enhancing training for healthcare professionals, 6, 120 facilitating living donor follow-up, 13, 277 financial incentives, 12, 259 implementing initiatives to increase rates of donation after circulatory determination of death, 6–7, 168 increasing opportunities for people to record their decision to donate, 9, 200 increasing public understanding of and support for organ donation, 8–9, 199 increasing research on innovative system changes, 5, 120 increasing research on organ quality and enhanced organ viability, 7, 168 maintaining opportunities for organ donation, 7, 168 from Non-Heart-Beating Organ Transplantation, 134–135 preferential access, 12, 259 protecting living donors, 13, 277 strengthening and integrating organ donation and quality end-of-life care practices, 6, 120 sustaining continuous quality improvement initiatives, 5, 119 systems approach, 4–6 terms, 4 Referrals, required, 101 Regional infrastructures, 159 Regulated commerce in organs, 99, 239–247 allowing buying and selling of organs, 239–242 American Board for Transplant Certification, 99 Association of Organ Procurement Organizations, 99

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Organ Donation: Opportunities for Action Centers for Medicare & Medicaid Services, 99 Joint Commission on Accreditation of Healthcare Organizations, 99 Organ Procurement and Transplantation Network, 99 question of whether payments would actually increase the organ supply, 242–245 question of whether payments would be a cost-effective policy, 245–247 Relationships between living donors and recipients, 265–266 Religion and deceased organ donation, 66–67, 257 Christianity, 66, 193 Confucianism, 67 group opinion in, 245 Hinduism, 67 Islam, 66 Judaism, 66–67 Taoism, 67 Requests and requesters, 108–110 formulation of, 107 required, 101 Respect for persons, 3, 79, 85–89 for decedents’ wishes, 87 for families, 88–89 for human dignity, 86 for human remains, 88 Resuscitation, 150–153 Risk-benefit ratios, 268–270 Risk of being placed on a waiting list for an organ transplant, by cause of death, 297 Robust informed consent, 271 Routine-removal policies, 205–208 S Safety, of the healthcare system, 93 Scandiatransplant, 27 SCCM. See Society of Critical Care Medicine Scientific Registry of Transplant Recipients (SRTR), 31, 98, 299 “Second Chance” Volunteers, 188 Self-interest, mutual, 221–222 Self-interest in organ donation, quantifying, 293–297 Selling. See Buying and selling of organs Sensitivity analysis, 295–296 Social and Behavioral Interventions grants program, 190–191, 299–301 Social issues, 28–29 Societal generosity, 221–222 Society of Critical Care Medicine (SCCM), 146 Spain, 26–27, 217 Spirituality, 65–68 religion and deceased organ donation, 66–67 SRTR. See Scientific Registry of Transplant Recipients State governments, 9, 84. See also individual states Strong presumed consent, 210–212 organ donation decision-making policies, 211 Supply side of an organ market, 232–236 barriers to a futures market, 234–235 commodification of dead bodies, 233–234 other complexities, 235–236 Surrogate decision making, 116 Survival. See Patient survival rate Sweden, 27 Systems changing, 286 trustworthiness of, 3 Systems approach recommendations, 4–6. See also Organ donation systems enhancing training for healthcare professionals, 6, 120 increasing research on innovative system changes, 5, 120 strengthening and integrating organ donation and quality end-of-life care practices, 6, 120 sustaining continuous quality improvement initiatives, 5, 119 Systems of care, an organizational perspective, 96–101 OPO donation rates, 100 regulation and accreditation, 99 T Taoism, and deceased organ donation, 67 Targeted research needs, 166–167 Task Force on Organ Transplantation, 81, 220

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Organ Donation: Opportunities for Action Tax incentives, 247 Termination of advanced cardiac life-support efforts, criteria for, 132 Terminology, 30–31 recommendations concerning, 4 Timeliness, of the healthcare system, 94 Timing and family involvement, 180 of requests, 107–108 Training in end-of-life communication and decision making, 117–119 for health professionals, 157–158 interdisciplinary, 118 Transparency, 84 Transplant centers, 6, 21, 26, 166, 168, 264–265 Transplant recipients, 25–26 Transplant waiting lists, 1–2, 16, 54 additions, 48 growth in numbers of candidates on, 2, 16 risk of being placed on, by cause of death, 297 Transplantation breakthrough collaboratives, 101–106 conversion rates among member hospitals, 105 increase in number of deceased organ donors, 105 quality improvement in health care, 102 Transplantation services growth and organization of, 20–22 Washington Hospital Center’s rapid organ recovery program, 305–315 Transplants, growth in numbers of, 2, 16 Trends, 45–75 organ donation statistics and trends, 45–62 who donates—individual and family decisions, 62–71 Trustworthiness of a system, 3, 29, 79–84 common stake in, 3 competence, 111–112 link between organ recovery and distribution, 80 normative, 112–113 reciprocity, 80–81 transparency, 84 U UAGA. See Uniform Anatomical Gift Act UDDA. See Uniform Determination of Death Act UK Transplant, 27 Uncontrolled DCDD, 128 estimation of potential donors, 155–156 myths and misperceptions about, 152 reexamination of, 154–156 Uncontrolled death, defining, 129–131 Unfair allocation problem, 257–258 Uniform Anatomical Gift Act (UAGA), 19, 22–23, 84, 138, 175, 177, 209, 230 Uniform Determination of Death Act (UDDA), 18–19, 144–146 United Kingdom, 26–27, 193, 217 United Network for Organ Sharing (UNOS), 8, 20, 53–55, 104, 136, 199, 238, 245, 253, 257–258, 267, 313 definition of expanded-criteria kidney donors, 162 United States (U.S.), 290–292. See also State governments; individual states University of Pennsylvania, 303 University of Wisconsin, 132, 303 UNOS. See United Network for Organ Sharing U.S. Department of Health and Human Services, 7, 20, 100, 133, 136, 168, 264, 272 U.S. efforts to increase organ donation, 31–33 funding the HRSA Division of Transplantation, 32 U.S. organ donation system context of the current, 95–101 required request and required referral, 101 systems of care—an organizational perspective, 96–101 U.S. Renal Data System, 53 U.S. Supreme Court, 148 V Vacco v. Quill, 148 Voluntary choice ensuring, 276–277

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Organ Donation: Opportunities for Action expanding opportunities to document donation decisions, 181–187 facilitating and documenting decisions to donate, 183–187 key issues for donor choice, 182–183 Voluntary consent, 272–273 Voluntary health organizations, 8, 199 W Waiting lists. See Transplant waiting lists Washington Hospital Center (WHC), 137–138 community education, 313–314 protocol for the rapid organ recovery program, 305–315 transplantation services, 305–315 Washington Regional Transplant Consortium (WRTC), 311 Weak presumed consent, 210–212, 217 WHC. See Washington Hospital Center Wisconsin, 194 Withdrawal of treatment, 147–148 Workplace efforts, 193 Workplace Partnership for Life, 193 Workshop meetings, 285–288 WRTC. See Washington Regional Transplant Consortium X Xenotransplantation, 38 Y Youth, 194–195

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