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  • A

  • admission to health care settings: advance care planning upon, 94, 151; criteria for, as resource allocation, 189-90, 194-95; patient notification of institutional policies prior to, 17, 126-27; preventing repeated, as discharge planning consideration, 99; see also discharge planning and transfers
  • adolescents: decision-making and, 14, 50, 67-79, 84, 85-87, 164-65; disclosure of medical information to, 72, 85; emancipated minors, 68, 86-87, 204; mature minors, 68, 86-87, 204; see also assent and capacity, determination of and decision-making and informed consent and surrogate
  • advance care planning: conducting, 35-40; definition of, 36, 203; emergency interventions and, 60-61, 165-67; in nursing homes, 95-96; policy and procedures for, 119-21; models for, 40-41; patients with dementia and, 41; with veterans, 40-41; see also advance directive and goals of care and medical orders and portable medical orders
  • advance directive; definition of, 3-4, 35, 203; review of, by patient, 39; see also advance care planning and portable medical orders and surrogate and treatment directive
  • advanced practice registered nurse (APRN), see nurse practitioner
  • Affordable Care Act (ACA), see Patient Protection and Affordable Care Act (PPACA)
  • age; and aging, 27-28; corresponding to developmental stages, in pediatric decision-making, 68; gestational age, as relevant factor in extreme prematurity, 80-81
  • agent, see durable power of attorney for health care, see also surrogate
  • Allow Natural Death (AND) orders, see DNR orders
  • Alzheimer’s disease, see dementia
  • ambivalence, 148-49
  • antibiotics, 178-80
  • artificial nutrition and hydration (ANH): right to refuse, 172; data on, 172-73; definition of, 171, 203; treatment decisions and, 136-37, 171-74, 184; see also dementia and nursing homes and nutrition and hydration
  • assent, 69, 70, 73, 74, 84-85
  • assessing patient’s ability to understand information, see clinical evaluation, see also capacity and decision-making
  • assisted suicide, see physician assisted suicide (PAS), see also suicide, vs. forgoing treatment
  • autonomy, see self-determination
  • B

  • Baxter v. Montana decision, 6
  • “bedside rationing,” vs. equity, 16
  • “bending the rules,” vs. equity, 192-93
  • beneficence, see well-being
  • benefit(s) of treatment: compared to burden(s), 54; in advanced cancer, 175-77; see also
  • nonbeneficial (futile) treatment
  • bereavement, 76, 80, 116, 153
  • best interests standard: definition of, 52-53, 203; in pediatric care settings, 69-70, 82-83
  • bleeding, treatment for, 181-82
  • blood and blood products: as resource allocation challenge, 16, 181-82, 189; decision-making about, 181-83; see also Jehovah’s Witnesses
  • brain death, see death, determination of
  • brain injuries: anoxic, 158, 159, 160-61; discussing, 157-61; traumatic (TBI), 141, 158, 159, 160-61
  • burden(s) of treatment: compared to benefit(s), 54; in advanced cancer, 175-77; perspective of pediatric patients concerning, 71-72; transfers and, 93-94; see also cost, as treatment-related burden
  • C

  • cancer, see chemotherapy and other cancer treatment
  • capacity: determination of, 46-48; fluctuating, 45, 53; uncertain, 53; see also competence and decision-making and disability
  • cardiac arrest, see resuscitation decisions
  • cardiopulmonary resuscitation (CPR): definition of, 165-66, 203; out-of-hospital outcomes of, 94-95; see also DNR and resuscitation decisions
  • cardiovascular implantable electronic devices (CIEDs): advance care planning and, 167-68; deactivation of, 167-68; types of, 167; see also left ventricular assistance devices (LVADs)
  • care transitions, see discharge planning and hand-offs and nursing homes and portable medical orders and transfers
  • certified nursing assistants, 172, see also paraprofessionals
  • challenges; by patient, to determination of capacity or incapacity, 48, 64; by patient, to
    surrogate’s decision, 64; to surrogate’s decision-making authority, 64
  • chaplains: definition, 198 n14; religious accommodations or objections, 107-08, 150-51; role in decision-making discussions and disagreements, 135-37; support for religious and
    spiritual needs of patients, 148, 149-50; see also health care team and religious accommodations and religious objections and spiritual care
  • charity care, see uncompensated care
  • chart, see documentation and medical orders and medical record
  • chemotherapy and other cancer treatment: establishing goals of treatment for advanced cancer, 176; reviewing goals after treatment fails, 175, 176-78; see also clinical trials and cost, as treatment-related burden and novel therapies and palliative care
  • children, treatment decision-making and, 67-79, 83-85, 136, 164-65, 171, see also assent and best interests standard and parents and pediatric
  • Children’s Health Insurance Program (CHIP), as funder of pediatric hospice care, 30, see also Patient Protection and Affordable Care Act (PPACA)
  • chronic conditions: relationship to end-of-life care, 30; treatment decision-making and, 120-21, 140, 174, 179
  • chronic kidney failure, see dialysis
  • civil partners, advance care planning and, 40, 49
  • clinical ethics: committees, 115; consultation, 114-15; definition, 112-13, 204; education, 19-22, 115-16l; policy and procedures for decision-making and care near the end of life, 116 see also ethics services in health care institutions
  • clinical evaluation: and determination of decision-making capacity, 47-48, 85, 116, 141, 142; of patient’s condition, 44-46
  • clinical trials: in cancer treatment, 175-76; in pediatric settings, 70, 84-85; patients’ requests concerning, 58
  • code status order, see DNR orders and medical orders
  • collaboration: ethics education competencies supporting 20-21; in pediatric decision-making, 70-71, 75-76, 84-85; with patients with disabilities, 139-143
  • coma, 157-59
  • comfort care, for dying patient, 63, 80, 136, 156, 163, 172, 174, 204, see also hospice and
    palliative care
  • comfort feeding, 173, see also hand feeding
  • communication: about brain injuries, 157-61; about values concerning nutrition and hydration, 136-37; during care transitions, 90-92, 94-97, 99-102; during disagreements among loved ones, 135; electronic and telephone, 137-38; in pediatric settings, 72-74; with disabled patients, 139-43; with pediatric patients, 71-72; when a patient’s condition is deteriorating, 132-35; see also conflict resolution and decision-making and family
  • conference
  • compassionate-use application, see novel therapies
  • competence, 46, see also capacity and decision-making
  • concurrent care for children, see pediatric hospice care, delivery and funding of,
  • conflict resolution, 21, 76-77, 125-26, 174
  • conscientious objection: accommodation of, 17; and duty of care, 65-66; compared to moral distress, 152; transfer of patient following, 126-27, 152
  • consent, see informed consent
  • conservator, see guardian, court-appointed
  • consultation: palliative care, 20, 38, 100-02, 117-19;  psychiatric, 142, 149, 174; with medical specialists during decision-making, 133, 158, 174; see also clinical ethics consultation
  • continuity of care: during care transitions, 21, 62,  89-92, 100-02, 122-24; in pediatric settings, 79
  • coping, 146
  • cost, as treatment-related burden, 28-29, 54, 177, 191-92
  • cost of care, as ethical issue for institutions, 187-95, see also undocumented immigrants and uninsured patients and uncompensated care
  • court review, see judicial review
  • Cruzan decision, xiii, 3
  • D

  • “dead donor rule,” see organ donation
  • death, determination of, 31, 105-10
  • decision-making: adolescents and, 85-87; by patients with capacity, 47-48; by patients with fluctuating capacity, 53; by surrogates, 48-53; children and, 67-85; in pediatric settings, 67-79; process for, 44-63; see also capacity and competence and disability and surrogate and time-limited trials
  • demands: for nonbeneficial (futile) treatment, 57-58;  vs. rights, 14
  • dementia: advance care planning and patients with, 41, 53; artificial nutrition and hydration (ANH) and, 92-94, 136, 172-73; treatment for comorbid conditions and, 30, 92-94 see also nursing homes and transfers denial, 148
  • dialysis: advance care planning and, 169-71; care of patient forgoing, 169-71; Medicare and, 195; organ transplantation and, 169; see also undocumented immigrants
  • disability: affecting cognition, 141-42; affecting speech, 140-41; experience of, by patient
    making decisions, 139-40; long-term potential for, as factor in decision-making following
    brain injury, 160-61; long-term potential for, as factor in decision-making for neonates,
    75, 83; treatment decisions and recent-onset, 142-43, 162; use of life-sustaining treatment to accommodate, 139-40; use of mechanical ventilation to accommodate, 164-65
  • disagreement: adolescent decision-making and, 86; among loved ones, 15, 21, 53, 64, 77, 85, 135, 136, 173; between patient or surrogate and health care professional, 15, 21, 82, 83; involving newly-arrived loved one, 135; within health care team, 21, 65, 72, 133, 190; see also conflict resolution and moral distress
  • discharge planning, 18, 20-21, 62, 79, 99-102
  • discussion, institutional, on resource allocation and cost of care, 187-95, seealso communication and decision-making
  • distress, psychological: as factor in surrogate decision-making, 21, 136; of dying person, 21, 145; see also existential suffering and moral distress
  • DNAR (do not attempt resuscitation) orders, see DNR orders
  • DNR (do not resuscitate) orders: definition, 204; policy and procedures for, 166-67; temporary suspension of, 60-61; see also cardiopulmonary resuscitation (CPR) and resuscitation decisions
  • documentation, of treatment decisions, 59-62, 74, see also medical orders and medical record and portable medical orders
  • “doing everything,” vs. informed decision-making, 56
  • double effect, rule of, 5-6, 186, see also pain and symptom relief and palliative sedation
  • durable power of attorney for health care, 3, 35, 48, 204, see also proxy directive and surrogate
  • duty of care, 17, 65, 85, 92, see also conscientious objection
  • dying patient: care during the dying process, 63; in the hospital, 102-03; psychological
    experience of, 145-46; support for loved ones of, 163; see also hospitals, as site of dying
    and nursing homes, as site of dying and withdrawing life-sustaining treatment
  • dyspnea, see pain and symptom relief
  • E

  • electronic communication with patients and surrogates, 137-38, see also telephone
    communication
  • emancipated minors, see adolescents
  • emergency, definition of, 47
  • emergency department (ED), end-of-life care in, 102-03
  • emergency interventions, 39,  47, 60, 97, 122, see also bleeding, treatment for and
  • cardiopulmonary resuscitation (CPR) and portable medical orders
  • end-stage renal disease (ESRD), see dialysis
  • equity: access to health care as, 16, 121, 188; in institutional resource allocation, 16, 29, 190
  • ethical integrity, of health care professionals and paraprofessionals, 17-18
  • ethics: definition of, 2-3, 204; education competencies, 19-22; goals, for health care
    professionals and institutions, 12-18; sources of guidelines on, 2
  • ethics services in health care institutions, 112-16, see also clinical ethics and ethics
  • euthanasia: definition, 6, 204; patients’ requests for, 57, 59; vs. forgoing life-sustaining
    treatment, 6-8; see also palliative sedation, ethical considerations in, and physician-assisted suicide (PAS)
  • existential suffering, clinical responses to, 149, see also palliative sedation
  • experimental treatment, see clinical trials
  • extraordinary care vs. ordinary care, 4
  • extreme prematurity, 67, 76, 79-82, see also marginal viability and neonates
  • F

  • fairness, 2, 16, 24, 58, 188, 195
  • family, definition of, 2, 26, 197n2, see also loved ones and parents and surrogate
  • family-centered care, definition of, 68, see also patient-centered care
  • family conference: in pediatric settings, 72-73; process for, 132-35
  • federal law, end-of-life decision-making and, 3, 31-32, see also state law
  • feeding tube, see artificial nutrition and hydration (ANH)
  • forgoing life-sustaining treatment, see right to refuse and withholding and withdrawing treatment
  • foster care, decision-making for children in, 77-78
  • friend, as surrogate, 26, 49
  • friends, see loved ones
  • futile treatment, see nonbeneficial treatment
  • G

  • “gaming the system,” vs. equity, 16
  • goals of care: establishing, 13, 35-37, 38, 43, 119-21; making decisions with reference to, 54, 73; revisiting, 98; see also advance care planning
  • grief: as factor in surrogate decision-making, 148; experienced by dying person, 145; see also bereavement
  • guardian, court-appointed, 49, 51, 116, 205
  • guidelines: purposes of, in ethics, 2; relationship to law, 2-3
  • H

  • hand feeding, 173, 204
  • “hand-offs,” 90-91, 118, 122-23
  • hastening death, foreseeable risk of, see double effect
  • health care institutions: as site of dying, 29-30; continuity of care among, 92, 99-102, 122-24; ethical responsibilities of, 111-12; organizational systems supporting end-of-life care in, 23-24; policy and procedures supporting decision-making in, 112-27; resource allocation challenges in, 187-95; see also hospitals and nursing homes
  • health care personnel, 204
  • health care professional, 204
  • health care team: cooperation among members of, 21, 90-91, 133; definition of, 204;
    disagreement among members of, 63-64, 65, 77; see also nurse and physician and conscientious objection and responsible health care professional
  • home care, discharge from hospital to, 99, 101-02
  • hope, 37, 146-48
  • hospice: as site of dying, 29-30, 89; discharge from hospital to, 57, 102; eligibility for, 30; in hospitals, 102-03; in nursing homes, 89-90; mission and identity of, 29-30; physician-assisted suicide, institutional policy concerning, 7l pre-referral to, 178; see also
    Medicaid, Hospice Benefit and Medicare, Hospice Benefit and palliative care and
    pediatric hospice care
  • hospital visitation directive, 35
  • hospitalists: as responsible health care professionals, 44; “hand-offs” between, 90-91, 120;
    role in care of Medicare patients, 91, 120; see also physician and responsible health care professional
  • hospitals, as site of dying, 29; financial incentives in and reimbursements to, 29; see also discharge planning and health care institutions and intensive care unit (ICU) and neonatal intensive care unit (NICU) and transfer hydration, see artificial nutrition and hydration (ANH) and nutrition and hydration
  • I

  • implantable cardioverter-defibrillator (ICD), see cardiovascular implantable electronic devices (CIEDs)
  • incapacity, see capacity
  • incompetence, see competence
  • infants, decision-making for, 82-83, see also children and neonates
  • information technology, 24, see also website
  • informed choice, see informed consent
  • informed consent, 47, 74-75, 109, 183, see also decision-making and assent
  • institutions, see health care institutions
  • insurance: patients without, 192-95; pediatric patients and, 30; private, 30; see also Patient Protection and Affordable Care Act (PPACA)
  • intensive care unit (ICU): family conference in, 132; “hand-offs” among staff in, 120; treatment withdrawal in, 155-57, 162-63; see also neonatal intensive care unit (NICU)
  • intravenous feeding, see artificial nutrition and hydration (ANH)
  • invasive procedures, 166, 178-81
  • J

  • Jehovah’s Witnesses, 182-83, see also blood and blood products
  • judicial review: of authority of surrogate, 64; of decision of surrogate, 64; of determination of incapacity, 48, 64
  • justice, see equity and fairness
  • K

  • killing, vs. withholding and withdrawing treatment, 6, 204, see also euthanasia and legal myths
  • L

  • law, role of in ethics, 2-4, 6-7, see also federal law and state law
  • leadership, role of in care of patients near the end of life, 23, 28, 51, 93, 94-96, 114, 115, 116,
  • 187, 194
  • left ventricular assistance devices (LVADs), 168
  • legal counsel, role in supporting ethical practice, 2-3, 124-25
  • legal myths, influence on health care practice, 17-18, 21-22, 124-25
  • liability concerns, influence on health care practice, 2-3, 17, 31, 94, 125
    see also legal counsel and legal myths
  • “life-or-death” decisions, preventing miscommunication about, 56-57, 76
  • life-sustaining treatment(s): definition of, 204; right to refuse, 3-4; specific treatments and technologies, 155-84
  • life-threatening condition(s), definition of, 204
  • living will, 3, 35, see also advance directive and treatment directive
  • locked-in syndrome, 158
  • long-term care facilities, see nursing homes
  • loved ones, definition of, 26, see also family 
  • M

  • marginal benefit(s): of cancer treatments, 175-77; of cardiopulmonary resuscitation (CPR), 95; of costly interventions, 28, 191
  • marginal viability, see threshold of viability
  • mature minors, see adolescents
  • mechanical circulatory support, 168-69, see also left ventricular assistance devices (LVADs)
  • mechanical ventilation: advance care planning for use of in chronic care, 164-65; care of dying patient following withdrawal of, 162-63; invasive, 161-63; noninvasive as alternative to invasive, ethics of, 164; types of, 161; withdrawal of, 155-57, 162-63; see also ventilator
  • mediation, see conflict resolution
  • Medicaid: Hospice Benefit for children, 31, 204; emergency, for uninsured patients, 193; nursing homes and, 29, 31, 93, 204
  • medical, definition of, 205
  • medical conference, see family conference
  • medical ethics, definition of, 205
  • medical orders: implementation and documentation of treatment decisions, 59-61; responsible professional and, 61-62; use of by nurses, 61-62; see also DNR orders and portable
  • medical orders
  • Medical Orders for Life-Sustaining Treatment (MOLST), see Physician Orders for Life-
    Sustaining Treatment (POLST)
  • medical record, as source of documented information on patient preferences, 119, 120
    see also documentation
  • medically supplied nutrition and hydration, see artificial nutrition and hydration (ANH)
  • Medicare: end-stage renal disease (ESRD) and dialysis reimbursement, 195; Hospice Benefit, 30, 31, 89-90, 204; influence on hospital care, 29, 91, 120
  • medication: for comorbid conditions, 179; routine, 178-79; see also antibiotics and pain and symptom relief
  • mental health services: in care of recently disabled patients, 143; in palliative care, 21, 54, 70, 100, 101, 108, 116-17, 146, 150; see also consultation, psychiatric and distress
  • minimally conscious state (MCS), 159-60
  • moral distress, 151-53, see also distress, psychological
  • N

  • nasogastric tube, see artificial nutrition and hydration (ANH)
  • necrotic wounds, 180
  • neonatal intensive care unit (NICU): as site of dying, 67; treatment decision-making in, 79-83
  • neonates: nonviable, 80; threshold of viability, 80-82; see also neonatal intensive care unit
    (NICU)
  • newborns, see infants and neonatal intensive care unit (NICU) and neonates
  • nonbeneficial treatment(s): no ethical obligation to offer, 57-58; patients’ requests for, 57-58
  • nonverbal patients, communication with, see disability, affecting speech and locked-in syndrome
  • nonviable neonates, comfort care for, 80
  • novel therapies, 176
  • nurse: as responsible health care professional, 19, 44, 205; implementation of treatment decisions by, 61-62; see also health care professionals and responsible health care professional
  • nurse practitioner, as responsible health care professional, 61-62, 204, see also health care
    professionals and responsible health care professional and nurse
  • nurses’ aides, see certified nursing assistants and paraprofessionals
  • nursing homes: advance care planning in, 93, 95-96; artificial nutrition and hydration (ANH); decisions in, 93, 136-37, 171-73; as site of dying, 29, 89, 92-93, 96; cardiopulmonary resuscitation (CPR) decisions in, 94-95; care transitions for residents of, 92-96, 122; decision-making in, 94-95; discharge from hospital to, 29, 101; financial and regulatory incentives in, 89-90, 93; hospice care in, 30, 89, 90; mission and identity of, 93; palliative care in, 93-94, 101
  • nutrition and hydration: care of dying patient and, 174; cessation of eating and drinking and, 173-74; discussing values concerning, 136-37; swallowing difficulties and, 172-73; see also artificial nutrition and hydration (ANH) and comfort feeding and dementia and hand feeding
  • O

  • objections, see challenges and religious objections
  • “off-label” drugs, see novel therapies
  • ordinary care, see extraordinary care
  • organ donation: after cardiac (or circulatory) death, 109-10; discussing, 108, 156-57
  • organ transplantation, 168, 169
  • organizational ethics, see ethics services in health care institutions and health care
    institutions and leadership and organizational systems
  • organizational systems, 18, 23-24
  • outpatient care: communication with patients receiving, 137-38; discharge from hospital to, 99-101; palliative care in, 117
  • P

  • pacemaker, see cardiovascular implantable electronic devices (CIEDs)
  • pain and symptom relief: as treatment benefit(s), 54; definition of, 205; obligation to provide, 5, 78; risk of hastening death (double effect) in context of, 5-6, 186; see also double effect, rule of and palliative care and palliative sedation
  • palliative care: definition of, 5, 205; in emergency department (ED), 102-03; in nursing homes, 94; in pediatric care settings, 78; integration into discharge plans, 100-02; integration into treatment plans, 54-55; obligation to provide, 5, 54-55, 78; policy and procedure supporting, 116-19; see also comfort care and hospice care and mental health services and pain and symptom relief  and palliative sedation and social workers and spiritual care
  • palliative sedation: as treatment for refractory and intolerable pain and symptoms, 149, 183; ethical consensus concerning, 183-84; ethical debates concerning, 185-86; informed
    consent for, 183; relationship to withholding and withdrawing life-sustaining treatment,
    184; see also double effect and euthanasia and existential suffering and pain and symptom relief
  • paraprofessionals: as member of health care team, 40, 62, 92, 99, 159; inclusion in ethics
    education, 12, 18, 31, 40, 152, 153, 188; see also health care personnel and health care team
  • parents, collaboration with in pediatric settings, 67, 69-71, 72-79
  • patient “alone,” see surrogate, for adult without decision-making capacity who lacks surrogate
  • patient-centered care, as ethics goal, 2, 12, 93, 114, see also family-centered care
  • Patient Protection and Affordable Care Act (PPACA), 28, 30, 79
  • Patient Self-Determination Act (PSDA), 31, 38
  • pediatric: as setting for treatment decision-making and end-of-life care, 67-87; see also 
    adolescents and children and infants and neonates
  • pediatric hospice care, delivery and funding of, 30, 72, 78-79
  • percutaneous endoscopic gastrostomy (PEG), see artificial nutrition and hydration (ANH)
  • perinatal care, 75, 79-80
  • permanent vegetative state, 158-59, 160
  • persistent vegetative state, 158-59, 160
  • physician, as responsible health care professional, 18, 44, 205, see also health care professionals and responsible health care professional
  • physician aid-in-dying, see physician-assisted suicide (PAS)
  • physician assistant (PA), medical orders and, 61, see also health care professionals and
    responsible health care professional
  • physician-assisted death, see physician-assisted suicide (PAS)
  • physician-assisted suicide (PAS): data on, 7; definition of, 6-7, 205; laws, policies, and
  • procedures concerning, 6-8, 31; patients’ requests for, 59; vs. forgoing life-sustaining
    treatment, 6; vs. palliative sedation, 186; see also conscientious objection and hospice
    care and state law
  • Physician Orders for Life-Sustaining Treatment (POLST): creation and use of, 39, 97-99;
  • definition of, 97, 205; policy supporting use of, 121-22
  • policy: institutional, 111-27, 187-95; state and federal, 3, 6-7, 31-32, 93, 195
  • portable medical orders: creation and use of, 39, 40-41, 95, 96-100; definition of, 96, 205;
  • policy supporting use of, 121-22; use of in discharge and transfer, 123; use of in nursing
    homes, 95; see also Physician Orders for Life-Sustaining Treatment (POLST)
  • pregnancy, 79-80
  • pre-referral, to hospice, 178, see also hospice
  • primary nurse: in care of patient experiencing existential suffering, 149; in pediatric settings, 71, 81; see also health care professional and nurse and responsible health care professional
  • privacy: during family conferences, 73, 133; during palliative care for nonviable neonate, 80; for patient and loved ones, 15, 102, 108, 137, 138; lack of, as source of existential
    suffering, 149
  • prognostic uncertainty, 83, 134, 156, 160-61
  • progressive disease: advance care planning in context of, 36-38, 120-21; relationship to end-of-
  • life care, 30
  • prolonging life: as potential benefit of treatment, 54; discussing patient preferences concerning, 37, 56-57; ethical acceptability of forgoing efforts aimed at, 3-4, 78-79;
    importance of not characterizing as “doing everything,” 56; integration of
  • palliative care with efforts aimed at, 56
  • proxy, see durable power of attorney for health care and surrogate
  • proxy directive: advance directive designating surrogate, 3, 35, 48, 205; as part of documentation transferred during “hand-offs,” 91; see also advance directive and durable power of attorney for health care and surrogate
  • psychiatric consultation: cessation of eating and drinking and, 174; existential suffering and, 149;
  • patients with psychiatric conditions and, 142
  • psychological factors in treatment decision-making, 145-53
  • PVS, see permanent vegetative state and persistent vegetative state
  • Q

  • quality improvement: as organizational system supporting patient care, 24; in advance care planning, 121; in palliative care, 117, 118; in care transitions, 124
  • “quality of life”: care transitions and, 90, 92; discussing in treatment decision-making, 169, 175; perceptions concerning disability and, 133
  • Quinlan decision, 3
  • R

  • religious accommodations, concerning objections to the determination of brain death, 107-08, see also chaplains and Jehovah’s Witnesses and religious commitments
  • religious commitments: concerning artificial nutrition and hydration (ANH), clarifying, 136-37;
  • restrictions on treatment and, 126-27, 136-37; treatment decision-making and, 15, 26,
    149-50; see also chaplains and conflict resolution and Jehovah’s Witnesses and religious objections
  • religious objections: during treatment decision-making, 136-37, 150-51; to the determination of brain death, 107-08; see also chaplains and Jehovah’s Witnesses and religious accommodations
  • resource allocation, as ethical challenge for health care institutions, 187-95
  • respirator, see mechanical ventilation and ventilator
  • responsible health care professional: clarifying identity of, 44; definition of, 19, 205; transfer of
  • responsibility during care transitions, 90-92; see also health care professionals and nurse
    and physician
  • resuscitation decisions: discussion and documentation of, 166; policy and procedures for, 166; suspension or modification of DNR orders, 166-67; see also advance care planning and CPR and DNR and portable medical orders
  • right to privacy, see privacy
  • right to refuse medical treatment: as legal right, 3-4; vs. demand for treatment, 14
  • risk managers, role in supporting ethical practice, 3, 57, 124-25
  • S

  • “safety net” funding, 193
  • same-sex spouses, advance care planning and, 49
  • sedation: and accommodation of invasive mechanical ventilation, 161; as burden, 181; as
    “respite” intervention, 183; during withdrawal of invasive mechanical ventilation, 162
    see also palliative sedation
  • self-determination: as respect for persons, 13-14, 25, 147; not “right to demand” nonbeneficial treatment, 14, 18; see also Patient Self-Determination Act (PSDA)
  • shared decision-making, see collaboration
  • skilled nursing facility (SNF), see nursing homes
  • social workers: in advance care planning, 38; in care of recently disabled patients, 141, 143; in discharge planning, 99; in discussing cost of care, 191-93; in palliative care, 117, 137, 150; in pediatric care, 72, 75; see also health care team
  • speech-language pathologists: in care of patients with disabilities affecting speech, 21, 140; in diagnosis and care of patients with locked-in syndrome, 158
  • spiritual assessment, as tool, 151
  • spiritual care, 149-51, see also chaplains and palliative care
  • spirituality and religion, as factors in treatment decision-making, 149-50, see also chaplains and palliative care
  • State Children’s Health Insurance Program (SCHIP), see Children’s Health Insurance Program (CHIP)
  • state law: brain death statutes, 105; emancipated minor statutes, 87; identification of default
  • surrogate with reference to, 49; knowledge of, as ethics competency, 21-22;
    mature minor statutes,  86; PAS statutes, 6-8; POLST authorization and, 98;
    treatment decision-making and, 3, 31-32; treatment decision-making concerning foster
    children and, 77; see also federal law
  • stopping treatment, see right to refuse and withholding and withdrawing treatment
  • substituted judgment standard, definition of, 52, 205
  • suffering: relief of, as benefit, 54, 69, relief of, as integral to health care, 5, 12-13, 52, 55, 61; see also existential suffering and pain and symptom relief and palliative care and psychological factors
  • suicide, vs. forgoing treatment, 6, see also physician-assisted suicide (PAS)
  • surrogate: advance care planning and designation of, 38-39; authority of, 3-4; court-appointed, 49; decision-making standards, 52-53; default, by statute, 49; definition of, 3, 205; designated by patient, 48-49; for adult who has never had decision-making capacity, 50; for adult without decision-making capacity who lacks surrogate (“unbefriended”), 51;
    identification of, 48, 51; multiple, 49; parents or guardians of child as, 50, 67, 69-71, 72-
    79; uninvolved, 50-51; see also best interests standard and challenges and substituted
    judgment standard and surrogate decision-making committee
  • surrogate decision-making committee, 50, 205
  • symptom relief, see pain and symptom relief and palliative care and palliative sedation
  • T

  • telephone communication with patients and surrogates, 137-38, see also electronic
    communication
  • terminally ill: definition of,  205; hospice eligibility and, 30; right to refuse treatment not
    restricted to, 4
  • termination of life-sustaining treatment, see withholding and withdrawing treatment
  • therapeutic misconception, 58
  • threshold of viability: definition of, 80-81; surrogate decision-making for neonates born at, 8082; see also extreme prematurity and neonatal intensive care unit (NICU) and neonates
  • time-limited trials (of treatment): in decision-making, 43, 55, 62, 155, 161, 164, 165, 169; in pediatric settings, 74, 80, 81, 83, 85, 86; recently-disabled patients and, 143
  • total parenteral nutrition (TPN), see artificial nutrition and hydration (ANH)
  • transfer (of patient): across care settings, 92; conflict resolution concerning, 92; consultation with patient or surrogate as part of,  92, 102; duty of care extending to arrival following, 92; ethics consultation concerning, 92; nursing home residents and consequences of, 93-94; policy and processes supporting, 122-24; see also discharge planning and hand-offs and nursing homes and portable medical orders
  • transfusions, see bleeding, treatment for, see also blood and blood products
  • transplantation, see organ transplantation
  • treatment directive: creation or review of in advance care planning, 36, 39, 119; definition of, 35, 205; use of, in surrogate decision-making, 52; see also advance care planning and advance directive and portable medical orders
  • treatment refusal, see decision-making and right to refuse medical treatment and withholding and withdrawing treatment
  • U

  • “unbefriended” patients, see surrogate, for adult without decision-making capacity who lacks surrogate
  • uncompensated care, 192-95
  • undocumented immigrants, 195
  • Uniform Anatomical Gift Act (UAGA), see death, determination of, see also organ donation
  • Uniform Determination of Death Act (UDDA), see death, determination of
  • uninsured patients, 192-95, see also Patient Protection and Affordable Care Act (PPACA)
  • unreimbursed care, see uncompensated care
  • V

  • Vacco v. Quill decision, 6
  • vegetative state (VS), as diagnosis, 158-60, see also permanent vegetative state and persistent
  • vegetative state
  • ventilator, 161 seealso mechanical ventilation
  • veterans: models for conducting advance care planning with, 40-41; relevance of combat history to care planning for, 40-41
  • Veterans Health Administration (VHA), surrogate decision-making process for unbefriended patients in, 51
  • voluntariness: in physician-assisted suicide (PAS) statutes, 6; vs. undue pressure, in decision-making, 64-65; see also informed consent
  • W

  • Washington v. Glucksberg decision, 6
  • weaning from ventilator, see mechanical ventilation
  • website: use of, in sharing information about institutional limits on treatment options, 126-27; use of, in sharing information about institutional policy and procedures, 24
  • well-being, promotion of, as ethics goal, 13
  • withdrawing life-sustaining treatment: care of dying patient and 155-57; dialysis, 170-71;
    ethical and practical considerations, 155-57; ethical equivalence to withholding, 4;
    invasive mechanical ventilation, 162-63
  • withholding life-sustaining treatment: ethical and practical considerations, 155-57; ethical equivalence to withdrawing, 4; vs. “bedside rationing,” 16
  • withholding and withdrawing life-sustaining treatment: ethical and practical considerations, 155-57; ethical equivalence, 4; legal myths as barrier to ethical practice concerning, 17