Pediatric end-of-life decisions when abuse is suspected
Female; Humans; infant; United States; Terminal Care; Parental Consent; referral and consultation; Medical Futility; Withholding Treatment; Life Support Care; Emergency Medical Services; Brain Injuries; Child Abuse; Skull Fractures
Arias JJ; Weise KL
The Virtual Mentor: Vm
2012
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Journal Article
<a href="http://doi.org/10.1001/virtualmentor.2012.14.10.ecas3-1210" target="_blank" rel="noreferrer">10.1001/virtualmentor.2012.14.10.ecas3-1210</a>
End-of-life care in a pediatric intensive care unit: The impact of the development of a palliative care unit
palliative care; pediatric intensive care unit; hospital mortality; withholding treatment; withdrawal
Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit. Method(s): A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records. Result(s): One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn. Conclusion(s): The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care. Copyright © 2020 The Author(s).
Bobillo-Perez S; Segura S; Girona-Alarcon M; Felipe A; Balaguer M; Hernandez-Platero L; Sole-Ribalta A; Guitart C; Jordan I; Cambra F J
BMC Palliative Care
2020
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<a href="http://doi.org/10.1186/s12904-020-00575-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00575-4</a>
Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing
decision making; life sustaining treatment; parent; adult; advisory committee; child; conference paper; female; follow up; grief; human; Infant Newborn; Information Dissemination; newborn; refusal to participate; retrospective study; terminal care; Withholding Treatment
Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are limited to imposing a duty to provide information to doctors. Decisions are taken at the end of a collegial meeting (CM) intended to better inform the child's referring physician (RP) who is in charge of the final decision following the French law. The aim of this study was to describe the support provided to bereaved families after they had been invited to attend a CM concerning their child, if they so wished. Additional aims were to determine the differences resulting from their acceptance or their refusal to participate as regards their perception of their child's history and as regards their grieving process. Material and method: We conducted a retrospective study of all CMs held between November 2016 and May 2021, drawing a distinction between proposals made or not made to parents and their decision to accept or refuse. Results: In total, 49 CMs concerning 46 children were held during the study period. The proposal was not made to the parents in three cases; the parents chose to be present in 28 cases. The psychological follow-up (15/28 parents attending, 10/16 parents absent) illustrated that their presence enabled them to reflect on their child's death after having listened to and understood the reasons why it happened. They did not dispute the team's approach or decisions taken. Conclusion: It is possible to include parents in CMs if they so wish. It would appear more beneficial than merely providing them with the information required. Studies must be carried out to ensure potential long-term benefit.
Boize P; Garner Y; Neaud E; Borrhomee S
Archives de Pediatrie
2024
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<a href="http://doi.org/10.1016/j.arcped.2023.10.004" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.10.004</a>
Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?
Child; Humans; retrospective studies; Intensive Care Units; Terminal Care; Medical Futility; Withholding Treatment; Professional-Family Relations; Culture; Conflict (Psychology); Religion and Psychology; Pediatric
Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a 'miracle' would happen.
2013-09
Brierley J; Linthicum J; Petros A
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100104" target="_blank" rel="noreferrer">10.1136/medethics-2011-100104</a>
Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.
Child; Female; Hospitalization; Humans; infant; Male; Palliative Care; Terminal Care; Terminally Ill; Withholding Treatment; Hospital Mortality; Length of Stay; Longitudinal Studies; Academic Medical Centers; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; retrospective studies; Hospitalized; Pain/diagnosis/drug therapy
OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team. DESIGN: Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children's Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life. RESULTS: Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented. CONCLUSIONS: The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.
2004
Carter BS; Howenstein M; Gilmer MJ; et al
Pediatrics
2004
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Journal Article
<a href="http://doi.org/10.1542/peds.2003-0654-f" target="_blank" rel="noreferrer">10.1542/peds.2003-0654-f</a>
Physicians' attitudes in relation to end-of-life decisions in Neonatal Intensive Care Units: a national multicenter survey
End-of-life care; Attitude; Neonates; Withdrawing treatment; Neonatal Intensive Care Units; Withholding treatment
BACKGROUND: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians' profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data. METHODS: A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians' attitude and views ranging from value of life to quality of life approach (scale 1-5). RESULTS: Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians' educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p < 0.001) were factors that affected the attitude score. CONCLUSIONS: Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.
Chatziioannidis I; Iliodromiti Z; Boutsikou T; Pouliakis A; Giougi E; Sokou R; Vidalis T; Xanthos T; Marina C; Iacovidou N
BMC Medical Ethics
2020
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<a href="http://doi.org/10.1186/s12910-020-00555-6" target="_blank" rel="noreferrer noopener">10.1186/s12910-020-00555-6</a>
Withdrawing artificial feeding from children with brain damage
Child; Humans; Withholding Treatment; Treatment Refusal; Euthanasia; Enteral Nutrition; Ethics; Medical; Preschool; Death and Euthanasia; Brain Diseases; Brain Damage; Chronic; Passive; Persistent Vegetative State
1995
Cranford R
Bmj (clinical Research Ed.)
1995
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Journal Article
<a href="http://doi.org/10.1136/bmj.311.7003.464" target="_blank" rel="noreferrer">10.1136/bmj.311.7003.464</a>
[French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions]
Child; Humans; Intensive Care Units; Palliative Care; patient care team; Terminal Care; Attitude of Health Personnel; Withholding Treatment; Resuscitation Orders; Double Effect Principle; Suicide; Patient Rights; Pediatric; Health Surveys; France; Assisted; Health Care; Quality Assurance
INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. MATERIALS AND METHODS: A multicenter survey in 24 French PICUs during the fourth trimester 2010. RESULTS: One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. CONCLUSION: This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period.
2014-01
de Saint Blanquat L; Cremer R; Elie C; Lesage F; Dupic L; Hubert P; pour le Groupe francophone de réanimation et urgences pédiatriques (GFRUP)
Archives De Pediatrie
2014
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Journal Article
<a href="http://doi.org/10.1016/j.arcped.2013.10.018" target="_blank" rel="noreferrer">10.1016/j.arcped.2013.10.018</a>
Talking with parents about end-of-life decisions for their children
adolescent; Child; Female; Humans; infant; Male; Intensive Care Units; Palliative Care; Advance Directives; decision making; Pediatrics; Withholding Treatment; Prospective Studies; Professional-Family Relations; Communication; Life Support Care; Netherlands; Qualitative Research; Pediatric; adolescent; Preschool; decision making; infant; Newborn; DNAR; Professional-Family Relations; Pediatrics; Advance Directives; Communication
BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer.
2015-02
de Vos MA; Bos AP; Plötz FB; van Heerde M; de Graaff Bert M; Tates K; Truog RD; Willems DL
Pediatrics
2015
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Journal Article
<a href="http://doi.org/10.1542/peds.2014-1903" target="_blank" rel="noreferrer">10.1542/peds.2014-1903</a>
Review of ethics in paediatric anaesthesia: intensive care issues
Child; Humans; Intensive Care Units; Withholding Treatment; Ethics; Third-Party Consent; Clinical; ICU Decision Making; Anesthesiology/legislation & jurisprudence; Brain Death/diagnosis; Pediatric/legislation & jurisprudence; Tissue Donors/legislation & jurisprudence
This is the third of a series of three articles examining the recent changes in the law in relation to ethics and the practice of paediatric anaesthesia. The review covers, in a practical question and answer format, the topics of consent, research, intensive care issues and organ donation in children.
2001
Edgar J; Morton NS; Pace NA
Paediatric Anaesthesia
2001
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Journal Article
<a href="http://doi.org/10.1046/j.1460-9592.2001.00701.x" target="_blank" rel="noreferrer">10.1046/j.1460-9592.2001.00701.x</a>
Care for dying patients.
Humans; Palliative Care; Advance Directives; Physician-Patient Relations; Family; Euthanasia; Communication; Physicians; decision making; advance care planning; DNAR; Withholding Treatment; Terminal Care; Passive
1997
Emanuel EJ
Lancet
1997
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Journal Article
<a href="http://doi.org/10.1016/s0140-6736(05)62952-2" target="_blank" rel="noreferrer">10.1016/s0140-6736(05)62952-2</a>
Pediatric palliative care and pediatric medical ethics: opportunities and challenges
adolescent; Child; Humans; infant; Pediatrics; Withholding Treatment; Communication; Resuscitation Orders; Ethics; Medical; Palliative Care; 20th Century; History
The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.
2014-02
Feudtner C; Nathanson PG
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2013-3608B" target="_blank" rel="noreferrer">10.1542/peds.2013-3608B</a>
Ethical issues in the pediatric intensive care unit
Child; Humans; United States; Parental Consent; Pediatrics; Withholding Treatment; Social Values; Intensive Care; Minors; Tissue and Organ Procurement; Ethics; Uncertainty; Medical; adolescent; Preschool; Professional Patient Relationship; infant; ICU Decision Making; Critical Illness/psychology; Judicial Role; Value of Life
Advanced technology and better scientific understanding of mechanisms of disease now permit intensive care personnel to extend life beyond what some patients and families consider reasonable, leading, in part, to the "patients' rights" movement and the articulation of legal and moral guidelines for foregoing life support. In the case of pediatrics, commentaries on a few of the topics that have arisen most frequently or have provided the greatest challenge in the authors' experience are provided.
1994
Frader JE; Thompson A
Pediatric Clinics Of North America
1994
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Journal Article
<a href="http://doi.org/10.1016/s0031-3955(16)38879-4" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)38879-4</a>
Circumstances surrounding end of life in a pediatric intensive care unit
Child; Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Withholding Treatment; Attitude to Death; Resuscitation Orders; Ontario; Analgesia; Treatment Failure; Pediatric; adolescent; Preschool; patient care team; decision making; infant; Newborn; ICU Decision Making; cause of death; Parents/psychology; Physicians/psychology; Terminal Care/psychology
OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting. METHODS: We conducted a prospective, descriptive study based on a survey with the intensivist after every consecutive death during an 8-month period in a single multidisciplinary pediatric intensive care unit. Summary statistics are presented as percentage, mean +/- standard deviation, or median and range; data are compared using the Mantel-Haenszel test and shown as survival curves. RESULTS: Of the 99 observed deaths, 27 involved failed cardiopulmonary resuscitation; of the remaining 72, 39 followed withdrawal/limitation (W/LT) of LST, 20 were do not resuscitate (DNR), and 13 were brain deaths (BDs). Families initiated discussions about forgoing LST in 24% (17 of 72) of cases. Consensus between caregivers and staff about forgoing LST as the best approach was reached after the first meeting with 51% (35 of 68) of families; 46% (31 of 68) required >or=2 meetings (4 not reported). In the DNR group, the median time to death after consensus was 24 hours and for W/LT was 3 hours. LST was later withdrawn in 11 of 20 DNR cases. The family was present in 76% (45 of 59) of cases when LST was forgone. The dying patient was held by the family in 78% (35 of 45) of these occasions. CONCLUSIONS: More than 1 formal meeting was required to reach consensus with families about forgoing LST in almost half of the patients. Families often held their child at the time of death. The majority of children died quickly after the end-of-life decision was made.
2003
Garros D; Rosychuk RJ; Cox PN
Pediatrics
2003
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Journal Article
<a href="http://doi.org/10.1542/peds.112.5.e371" target="_blank" rel="noreferrer">10.1542/peds.112.5.e371</a>
Rethinking the role of tube feeding in patients with advanced dementia
Humans; United States; Medical Futility; Withholding Treatment; Euthanasia; Religion and Medicine; Risk Assessment; Medical; Mental Health Therapies; Professional Patient Relationship; Death and Euthanasia; decision making; Pneumonia; Psychological; Stress; Legislation; Passive; Empirical Research; Alzheimer Disease/therapy; Aspiration/prevention & control; Dementia/therapy; Enteral Nutrition/adverse effects/standards; 'Physical'; Restraint
2000
Gillick MR
The New England Journal Of Medicine
2000
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Journal Article
<a href="http://doi.org/10.1056/nejm200001203420312" target="_blank" rel="noreferrer">10.1056/nejm200001203420312</a>
Simple changes can improve conduct of end-of-life care in the intensive care unit.
Female; Humans; Male; Attitude of Health Personnel; Aged; Middle Aged; Resuscitation Orders; Intervention Studies; Patient Admission; Pastoral Care; retrospective studies; cause of death; DNAR; cardiopulmonary resuscitation; Intensive Care Units; Life Support Care; Palliative Care; Withholding Treatment; Analgesics/tu [Therapeutic Use]; Diazepam/tu [Therapeutic Use]; DNAR Outcomes; Hypnotics and Sedatives/tu [Therapeutic Use]; Nurses/px [Psychology]; Physicians/px [Psychology]
PURPOSE: To describe changes to the conduct of withdrawal of life support (WOLS) in two teaching hospital tertiary care medical surgical intensive care units (ICUs) in a single centre over two distinct time periods., METHODS: We used a retrospective chart review with a before and after comparison. We assessed aspects of end-of-life care for ICU patients dying after a WOLS before and after we introduced instruments to clarify do not resuscitate (DNR) orders and to standardize the WOLS process, sought family input into the conduct of end-of-life care, and modified physicians' orders regarding use of analgesia and sedation., RESULTS: One hundred thirty-eight patients died following life support withdrawal in the ICUs between July 1996 and June 1997 (PRE) and 168 patients died after a WOLS between May 1998 and April 1999 (POST). Time from ICU admission to WOLS (mean +/- SD) was shorter in the POST period (191 +/- 260 hr PRE vs 135 +/- 205 hr POST, P = 0.05). Fewer patients in the POST group received cardiopulmonary resuscitation in the 12-hr interval prior to death (PRE = 7; POST = 0: P < 0.05). Fewer comfort medications were used (PRE: 1.7 +/- 1.0 vs POST: 1.4 +/- 1.0; P < 0.05). Median cumulative dose of diazepam (PRE: 20.0 vs POST: 10.0 mg; P < 0.05) decreased. Documented involvement of physicians in WOLS discussions was unchanged but increased for pastoral care (PRE: 10/138 vs POST: 120/168 cases; P < 0.05). The majority of nurses (80%) felt that the DNR and WOLS checklists led to improved process around WOLS., CONCLUSION: Simple changes to the process of WOLS can improve conduct of end-of-life care in the ICU.
2004
Hall RI; Rocker GM; Murray D
Canadian Journal Of Anaesthesia
2004
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Journal Article
<a href="http://doi.org/10.1007/bf03018408" target="_blank" rel="noreferrer">10.1007/bf03018408</a>
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
Variables influencing end-of-life care in children and adolescents with cancer
Child; Female; Humans; Male; Adult; Withholding Treatment; Resuscitation Orders; adolescent; Preschool; Empirical Approach; Death and Euthanasia; decision making; infant; cause of death; Neoplasms/complications/therapy; location of death; hospice care; home care services; Terminal Care/trends
BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for demographics, diagnosis, location of death, withdrawal of life support, use of "do not resuscitate" (DNR) orders, and the length of time that those orders were in effect. RESULTS: Ninety-five patients were evaluated. Fifty-nine died of progressive disease and 36 deaths were therapy-related. Sixty-four percent of disease-related deaths occurred at home with support from home care or hospice. Only 10% of all patients died while receiving maximal aggressive support in the intensive care unit. Age, diagnosis (solid tumor vs. leukemia), cause of death, length of last hospital admission, and the duration of DNR orders had a significant correlation with the place of death and referral to and use of hospice. Thirty-five percent of all patients had hospice support. CONCLUSIONS: Most children who die of cancer die because of progressive disease at home with hospice support. Do not resuscitate orders were written for most patients who died. End-of-life decisions are influenced by patient diagnosis, cause of death, and age.
Klopfenstein KJ; Hutchison C; Clark C; Young D; Ruymann FB
Journal Of Pediatric Hematology/oncology
2001
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Journal Article
<a href="http://doi.org/10.1097/00043426-200111000-00004" target="_blank" rel="noreferrer">10.1097/00043426-200111000-00004</a>
Alterations in end-of-life support in the pediatric intensive care unit.
Child; Humans; Advance Directives; Withholding Treatment; Life Support Care; Resuscitation Orders; Brain Death; Pediatric; DNAR; Intensive Care Units; Terminal Care
OBJECTIVE: Our purpose was to examine alterations in end-of-life support in a multiinstitutional sample of PICUs., METHODS: This was a retrospective, descriptive study. Variables collected included end-of-life support category, race, length of stay, operative status, reason for admission, and Pediatric Index of Mortality 2 score, as well as the number of ICU beds and the presence of trainees., RESULTS: There were 1745 deaths at 35 institutions between January 1, 2004, and September 30, 2005. Of those, 1263 had complete data and were analyzed. The end-of-life support category distribution was as follows: brain death, 296 (23%); do not resuscitate, 205 (16%); limitation of support, 36 (3%); withdrawal of support, 579 (46%); no limitation, 124 (10%); no advance directives, 23 (2%). For further analyses, end-of-life support categories were grouped as limitation (ie, do not resuscitate, limitation of support, or withdrawal of support) versus no limitation (ie, no limitation or no advance directive). Brain death was not included in further analyses. The majority of deaths were in the limitation group (n=820 [85%]), and 12 (40%) of 30 institutions had 100% of deaths in this group. There were significant differences between institutions (P<.001). Decisions for limitation were seen less frequently in the black race (112 [76%] of 147 deaths; P=.037) and in institutions with no trainees (56 [69%] of 81 deaths; P<.001)., CONCLUSIONS: Decisions to limit support are common. Black race and an absence of trainees are associated with decreased frequency of limitation decisions.
2010
Lee KJ; Tieves K; Scanlon MC
Pediatrics
2010
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Journal Article
<a href="http://doi.org/10.1542/peds.2010-0420" target="_blank" rel="noreferrer">10.1542/peds.2010-0420</a>
Termination of nutrition and hydration in a child with vegetative state
Female; Humans; Parents; Withholding Treatment; Euthanasia; Dissent and Disputes; Group Processes; Enteral Nutrition; Death and Euthanasia; decision making; infant; Brain Diseases; Child Abuse Amendments 1984; Clinical; Coma/etiology/therapy; Connecticut; Ethics Committees; Federal Government; Government Agencies; Government Regulation; Hartford Hospital (CT); Passive/legislation & jurisprudence; Right to Die/legislation & jurisprudence; Status Epilepticus/complications
A child in a vegetative state may present difficult decisions for physicians and families regarding the course of treatment. We report a case of a child who entered a prolonged vegetative state following status epilepticus. The child's parents requested termination of artificial means of nutrition and hydration. That request culminated in a complex legal intervention by multiple state agencies and attracted local media attention. This article presents the details of the case and discusses the medical and legal complexities encountered. The diagnosis and prognosis of the persistent vegetative state in children have recently been defined. Decision making in these circumstances should be based on adequate, careful clinical evaluation of the medical facts. Hospital ethics committees can provide an independent forum in which the diverse viewpoints in a case may be examined. Decision making should optimally be accomplished between families and caretakers.
1994
Leicher CR; DiMario FJ
Archives Of Pediatrics & Adolescent Medicine
1994
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Journal Article
<a href="http://doi.org/10.1001/archpedi.1994.02170010089021" target="_blank" rel="noreferrer">10.1001/archpedi.1994.02170010089021</a>
Limitations and withdrawals of medical intervention in pediatric critical care
Child; Female; Humans; Male; Survival Rate; United States; Intensive Care Units; Withholding Treatment; Hospital Mortality; Resuscitation Orders; Patient Selection; Analysis of Variance; Outcome and Process Assessment (Health Care); Preschool; Empirical Approach; Death and Euthanasia; infant; ICU Decision Making; Intervention; Interventions; Life Support Care/utilization; Pediatric/standards/statistics & numerical data
OBJECTIVE--To investigate the use and implementation in pediatric intensive care units (PICUs) of three levels of restriction of medical intervention: do not resuscitate (DNR), additional limitations of medical interventions beyond DNR, and withdrawal of care. DESIGN--Consecutive patients admitted between December 1989 and January 1992. SETTING--A total of 16 PICUs randomly selected to represent variability in size, teaching status, and presence or absence of a pediatric intensivist and unit coordination. MAIN OUTCOME MEASURES--Profiles of children undergoing restrictions of medical interventions including the influence of chronic disease, the justifications for restrictions, and description of implementation practices. PATIENTS--All pediatric admissions undergoing restrictions (n = 119) drawn from 5415 consecutive PICU admissions. RESULTS--A total of 94 (79%) of the restriction patients died during the PICU course, representing 38% of all deaths. A total of 73 restrictions (61%) resulted from acute disease, most involving the central nervous system or respiratory system. Restrictions were evenly divided between DNR (39%), additional limitations of medical intervention beyond DNR (27%), and withdrawals of medical intervention (34%). Survival decreased with increasing levels of restriction from 35% of DNR patients to 9% of patients with additional limitations and 2% of withdrawal patients. Imminent death was cited as the justification for restrictions in 70% of cases, no relational potential was cited in 22%, and excessive burden was cited in 8%. CONCLUSIONS--Restrictions of medical intervention were used in all PICUs surveyed. Although severe chronic disease was common among restriction patients, acute disease was the predominant event precipitating placement of restrictions. Imminent death, not quality of life or excessive burden, was the most common justification.
1994
Levetown M; Pollack MM; Cuerdon TT; Ruttimann UE; Glover JJ
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.272.16.1271" target="_blank" rel="noreferrer">10.1001/jama.272.16.1271</a>
Moral equivalence theory in neonatology
Humans; Decision Making; Infant, Newborn; Withholding Treatment; Morals; Neonatology
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rationale behind ET, and provide an analysis of how ET relates to literature that describes neonatal mode of death and healthcare professional and parent attitudes towards end-of-life care. While ET may serve as an ethical tool to optimize resource allocation in theory, its clinical utility is limited given the complexity of end-of-life care decisions.
Lin M; Vitcov GG; Cummings CL
Seminars in Perinatology
2022
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<a href="http://doi.org/10.1016/j.semperi.2021.151525" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151525</a>
Must patients always be given food and water?
Humans; United States; Withholding Treatment; Social Values; Euthanasia; Risk Assessment; Moral Obligations; Ethics; Parenteral Nutrition; Medical; Death and Euthanasia; Analytical Approach; RDF Project; Passive; Life Support Care/legislation & jurisprudence; Malpractice/legislation & jurisprudence; Philosophical Approach
KIE: The widespread consensus that withholding certain life-sustaining treatments, especially those entailing substantial suffering, is sometimes in a patient's best interest conflicts with our basic instincts when the treatments are food and water. Lynn and Childress examine the medical aspects of various nutritional options and the moral obligations pertinent to decision making. They conclude that, in certain limited cases, malnutrition and dehydration need not be corrected and that nutrition and hydration are not distinguishable morally from other life-sustaining treatments that may on occasion be withheld or withdrawn.
1983
Lynn J; Childress JF
The Hastings Center Report
1983
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Journal Article
<a href="http://doi.org/10.2307/3560572" target="_blank" rel="noreferrer">10.2307/3560572</a>
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
Humans; Infant, Newborn; Infant; Decision Making; Terminal Care; Withholding Treatment; Medical Futility; Bioethics; Terminal Care; Death; Resuscitation
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.
Mariani G; Arimany M
Archivos Argentinos de Pediatria
2023
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<a href="http://doi.org/10.5546/aap.2022-02872.eng" target="_blank" rel="noreferrer noopener">10.5546/aap.2022-02872.eng</a>
Comfort care for terminally ill patients. The appropriate use of nutrition and hydration
Female; Humans; Male; Withholding Treatment; Prospective Studies; Aged; Middle Aged; New York; Risk Assessment; Fluid Therapy; Parenteral Nutrition; quality of life; 80 and over; Empirical Approach; Death and Euthanasia; Hunger; Nursing Homes/standards; Nutrition; NY); Palliative Care/psychology; Psychological; St. John's Home (Rochester; Stress; Terminal Care/methods/psychology/standards; Thirst; Xerostomia/therapy
OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation. DESIGN--Prospective evaluation of consecutively admitted terminally ill patients treated in a comfort care unit. SETTING--Ten-bed comfort care unit in a 471-bed long-term care facility. PARTICIPANTS--Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit. MAIN OUTCOME MEASURES--Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients. RESULTS--Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially. Similarly, 20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness. In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips. Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients. CONCLUSIONS--In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.
1994
McCann RM; Hall WJ; Groth-Juncker A
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.1994.03520160047041" target="_blank" rel="noreferrer">10.1001/jama.1994.03520160047041</a>
Parental perspectives on end-of-life care in the pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Terminal Care; Adult; Withholding Treatment; Prognosis; Questionnaires; Boston; Pain; Quality of Health Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Parents/psychology
OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.
2002
Meyer EC; Burns JP; Griffith JL; Truog RD
Critical Care Medicine
2002
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Journal Article
<a href="http://doi.org/10.1097/00003246-200201000-00032" target="_blank" rel="noreferrer">10.1097/00003246-200201000-00032</a>
Withholding nutrition from seriously ill newborn infants: a parent's perspective
Humans; infant; Male; Adult; Parents; Withholding Treatment; Euthanasia; Age Factors; Patient Selection; Morals; Enteral Nutrition; Death and Euthanasia; Newborn; Euthanasia; Brain Diseases; Diseases; Jurisprudence; Passive
1988
Miraie ED
The Journal Of Pediatrics
1988
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Journal Article
<a href="http://doi.org/10.1016/s0022-3476(88)80262-2" target="_blank" rel="noreferrer">10.1016/s0022-3476(88)80262-2</a>
Medical ethics in pediatric critical care
Child; Humans; United States; Terminal Care; decision making; Parental Consent; Personal Autonomy; Pediatrics; Withholding Treatment; Professional-Family Relations; Dissent and Disputes; Truth Disclosure; Critical Care; Tissue and Organ Procurement; Ethics; Medical; Patient Rights; Clinical; Ethics Committees; Resource Allocation
Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital ethics committees, and national guidelines, such as publications from the American Academy of Pediatrics, American Medical Association, or Society of Critical Care Medicine, are an essential part of the toolkit of any intensivist. Open discussion with colleagues and within the multidisciplinary team can also ensure that when difficult situations arise, they are addressed in a proactive, evidence-based, and collegial manner.
2013-04
Orioles A; Morrison WE
Critical Care Clinics
2013
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Journal Article
<a href="http://doi.org/10.1016/j.ccc.2012.12.002" target="_blank" rel="noreferrer">10.1016/j.ccc.2012.12.002</a>
Terminal dehydration, a compassionate treatment
Female; Male; Palliative Care; Adult; Aged; Fluid Therapy; Enteral Nutrition; Parenteral Nutrition; 80 and over; Psychological; Human; Case Report; Withholding Treatment; Terminal Care/standards; Risk Assessment; Stress
1992
Printz LA
Archives Of Internal Medicine
1992
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Journal Article
Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants
Critical Illness/th [Therapy]; Decision Making; Parents/px [Psychology]; Terminal Care; Belgium; gestational age; Humans; infant; Infant Newborn; Life Support Care/px [Psychology]; Medical Futility/px [Psychology]; Physician-Patient Relations; retrospective studies; Surveys and Questionnaires; Terminal Care/px [Psychology]; Withholding Treatment
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
Provoost V; Cools F; Deconinck P; Ramet J; Deschepper R; Bilsen J; Mortier F; Vandenplas Y; Deliens L
European Journal Of Pediatrics
2006
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<a href="http://doi.org/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-006-0190-4</a>
Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean
Clinical Decision-Making/ethics; patient advocacy; patient transfer/ethics; withholding treatment
Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million (~$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States. Copyright © 2020 by the American Academy of Pediatrics
Ross LF
Pediatrics
2020
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<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-0818L</a>
An Objective Approach to Decisions to Withdraw or Withhold Life-sustaining Medical Treatment
Australia; best interests; child; Child; Decision Making; England; futility; Humans; life-sustaining treatment; New Zealand; parens patriae; Preschool; Wales; withdrawing treatment; withholding treatment; Withholding Treatment
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of cases have considered whether treatment is objectively in the child's best interests. This article seeks to identify whether there are factors identified and weighed in a consistent manner across cases. Thirty cases involving decisions about the provision of life-sustaining medical treatment to children three years old or younger were identified. Judges regularly refer to the need to weigh benefits and burdens and these factors were identified and assigned scores. Eight key factors were identified, and a scoring range was assigned to each. The factors focus on the condition and position of the child and the burdens of invasive medical treatment. The review demonstrates there are factors consistently identified and despite criticisms of the indeterminacy of the best interests test, there may be a broadly consistent approach to decision-making. Cognitive capacity and unavoidably imminent death appear to be the two most influential factors in determining whether life-sustaining treatment should be provided.
Savulescu J; Cameron J
Journal of Law and Medicine
2019
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Effects of offering advance directives on medical treatments and costs
Humans; Personal Autonomy; Withholding Treatment; Prospective Studies; California; Hospitals; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; DNAR Outcomes; Resource Allocation; Health Care and Public Health; Veterans; University; Advance Directives/ec [Economics]; Advance Directives/psychology; California Durable Power of Attorney for Health Care; Control Groups; Cost Control/methods; Life Support Care/utilization; Life Support Care/economics; Patient Satisfaction/statistics & numerical data; Risk Assessment
Objective: To examine the effects of advance directives on medical treatments and on patient satisfaction and well-being and to determine whether the enhancement of patient autonomy through advance directives provides a more ethically feasible approach to cost control than does the imposition of limits through rationing.; Design: Randomized, controlled trial.; Setting: University and Veterans Affairs medical center.; Patients: Two hundred and four patients with life-threatening illnesses, 100 of whom died after enrollment in the study.; Intervention: Patients randomly assigned to the experimental group were offered the California Durable Power of Attorney (a typical proxy-instruction directive), and patients assigned to the control group were not offered the advance directive. Hospital admissions were monitored to assure that a summary of the document was present in the active medical record at each hospitalization.; Measurements: Cognitive function, patient satisfaction, psychological well-being, health locus of control, sense of coherence, health-related quality of life, receipt of medical treatments, and medical treatment charges.; Results: No significant differences were found between advance-directive and control groups regarding psychosocial variables, health outcome variables, and medical treatments or charges. Patients offered an advance directive had an average hospital stay of 40.8 days (95% CI, 32.2 to 49.4 days), compared with an average of 33.1 days (95% CI, 26.0 to 40.2 days) for controls. Patients offered an advance directive were charged an average of $19,502 (95% CI, $13,030 to $25,974) for medical treatments in the last month of life compared with $19,700 (95% CI, $13,704 to $25,696) for controls.; Conclusions: Despite claims that public demand for longer life accounts for rising medical costs, most surveys suggest that patients are calling for less, not more, of the expensive, high-technology treatment often used in terminal phases of illness. Executing the California Durable Power of Attorney for Health Care and having a summary copy placed in the patient's medical record had no significant positive or negative effect on a patient's well-being, health status, medical treatments, or medical treatment charges.;
1992-10
Schneiderman LJ; Kronick R; Kaplan RM; Anderson JP; Langer RD
Annals Of Internal Medicine
1992
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Journal Article
End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.
Child; Humans; United States; Palliative Care; Advance Directives; Adult; Canada; Deep Sedation; Withholding Treatment; Aged; Euthanasia; Europe; Suicide; decision making; Active; DNAR; Assisted/lj [Legislation & Jurisprudence]; Terminal Care; Voluntary; Bioethical Issues; Public Opinion
This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document.Copyright © 2011 Blackwell Publishing Ltd.
Schuklenk U; van Delden JJM; Downie Jocelyn; McLean SAM; Upshur R; Weinstock D
Bioethics
2011
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Journal Article
<a href="http://doi.org/10.1111/j.1467-8519.2011.01939.x" target="_blank" rel="noreferrer">10.1111/j.1467-8519.2011.01939.x</a>
Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics
Attitude to Death; Argentina; Child; Cross-Sectional Studies; decision-making; ethics; Health Care Surveys; Humans; legislation and jurisprudence; Life Support Care/ legislation & jurisprudence; Pediatric intensive care unit; Pediatrics/ legislation & jurisprudence; Withholding Treatment; Withholding Treatment/ legislation & jurisprudence
INTRODUCTION: The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support techniques that would only extend an irreversible process and result in physical and psychological damage and harm their dignity. On the other side, withholding or withdrawing life support without an adequate reflection and diagnostic-therapeutic effort which may lead to the death of a potentially recoverable child. In addition, making decisions in this context implies facing barriers that hinder the possibility of pursuing the patient's best interest. Among such barriers, the fear of litigation plays a major role. To what extent is this fear justified? OBJECTIVE: To explore the opinions of the members of the National Judiciary regarding the approach to withholding or withdrawing of life support from a legal stance. POPULATION AND METHODS: Professionals working in the criminal, civil and forensic medicine settings. Semistructured survey on three hypothetical case histories that implied making a decision to withhold or withdraw life support. RESULTS: One hundred and eighty-five surveys were distributed; 68 (36.76%) were partially completed and 51 (30.3%), in full. Twenty-eight (55%) survey respondents did not criminalize any of the three cases presented. Thirteen (25%) respondents considered that the decisions made in the three cases constituted a crime; 6 (12%), only in one case; and 4 (8%), in two out of the three. Crimes described by survey respondents included intentional homicide, wrongful death, and failure to render assistance. CONCLUSIONS: Forty-five percent of survey respondents considered that decisions made involved some form of crime.
2016-08
Selandari JO; Ciruzzi MS; Roitman AJ; Ledesma F; Menendez C; Garcia HO
Archivos Argentinos De Pediatria
2016
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<a href="http://doi.org/10.5546/aap.2016.298" target="_blank" rel="noreferrer">10.5546/aap.2016.298</a>
What influences parents' decisions to limit or withdraw life support?
Child; Female; Humans; Male; Adult; Withholding Treatment; Emotions; Prospective Studies; Middle Aged; Attitude to Death; Pilot Projects; Life Change Events; adolescent; Preschool; decision making; infant; ICU Decision Making; Parents/psychology; Life Support Care/psychology
OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the use of closed-ended questionnaires. We prospectively identified and described parents' self-reported influences on decisions to forgo life support from their children. Deeper understanding of parents' views will allow physicians to focus end-of-life discussions on factors important to parents and help resolve conflicts. DESIGN: Prospective, qualitative pilot study. SETTING: Pediatric intensive care unit of a university-affiliated children's hospital. PARTICIPANTS: A total of 14 parents of ten children whose pediatric intensive care unit physician had made a recommendation to limit or withdraw life support. INTERVENTIONS:: In-depth, semistructured interviews were conducted with parents during their decision-making process. MEASUREMENTS AND MAIN RESULTS: Factors influencing the parents in this study in their decision to forgo life support included their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care. Parents in this study expressed the desire to do what is best for their child but struggled with feelings of selfishness, guilt, and the need to avoid agony and sorrow. Physician recommendations, review of options, and joint formulation of a plan helped parents gain a sense of control over their situation. Parents of eight children agreed to forgo life support and parents of two did not. CONCLUSIONS: Prospective interviews with open-ended questions identified factors influencing parents' decision making not previously described in the critical care literature such as parents' past experiences with end-of-life decisions and their anticipated emotional adjustments and future resources. Inclusion of these factors into discussions is important to parents and may facilitate decisions regarding the limitation or withdrawal of life support.
2005
Sharman M; Meert KL; Sarnaik AP
Pediatric Critical Care Medicine
2005
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000170616.28175.d9" target="_blank" rel="noreferrer">10.1097/01.pcc.0000170616.28175.d9</a>
New and lingering controversies in pediatric end-of-life care
Child; Humans; Analgesics; Data Collection; Attitude of Health Personnel; Medical Futility; Medical Staff; Withholding Treatment; Life Support Care; Medical; Practice Guidelines; ICU Decision Making; Pain/drug therapy; Opioid/therapeutic use; Specialties; Terminal Care/psychology; Nurses/psychology; Hospital/psychology
OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study's objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. METHODS: Three children's hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. RESULTS: A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, "At times, I have acted against my conscience in providing treatment to children in my care." For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, approximately 20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, "Sometimes I feel we are saving children who should not be saved," as agreed with the statement, "Sometimes I feel we give up on children too soon." However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, "Sometimes I feel the treatments I offer children are overly burdensome." Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92-98%, depending on specialty) and nurses (range: 83-85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. CONCLUSIONS: There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians' regard for the dead-donor rule.
2005
Solomon MZ; Sellers DE; Heller KS; Dokken DL; Levetown M; Rushton C; Truog RD; Fleischman AR
Pediatrics
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2004-0905" target="_blank" rel="noreferrer">10.1542/peds.2004-0905</a>
Life-Sustaining Treatment Status at the Time of Death in a Japanese Pediatric Intensive Care Unit
decision making;Intensive Care Units;Life Support Care;Terminal Care sn [Statistics & Numerical Data];Adolescent;Artificial;Brain Death di [Diagnosis];Child;Female;Humans;Length of Stay;Life Support Care;Male;Pediatric sn [Statistics & Numerical Data];Preschool;Respiration;Resuscitation Orders;Retrospective Studies;Terminal Care px [Psychology];Time Factors;Withholding Treatment
BACKGROUND: Substantial variability exists among countries regarding the modes of death in pediatric intensive care units (PICUs). However, there is limited information on end-of-life care in Japanese PICUs. Thus, this study aimed to elucidate the characteristics of end-of-life care practice for children in a Japanese PICU. METHODS: We examined life-sustaining treatment (LST) status at the time of death based on medical chart reviews from 2010 to 2014. All deaths were classified into 3 groups: limitation of LST (limitation group, death after withholding or withdrawal of LST or a do not attempt resuscitation order), no limitation of LST (no-limitation group, death following failed resuscitation attempts), or brain death (brain death group). RESULTS: Of the 62 patients who died, 44 (71%) had limitation of LST, 18 (29%) had no limitation of LST, and none had brain death. In the limitation group, the length of PICU stay was longer than that in the no-limitation group (13.5 vs 2.5 days; P = .01). The median time to death after the decision to limit LST was 2 days (interquartile range: 1-5.5 days), and 94% of the patients were on mechanical ventilation at the time of death in the limitation group. CONCLUSIONS: Although limiting LST was a common practice in end-of-life care in a Japanese PICU, a severe limitation of LST such as withdrawal from the ventilator was hardly practiced, and a considerable LST was still provided at the time of death.
Suzuki F;Takeuchi M;Tachibana K;Isaka K;Inata Y;Kinouchi K
American Journal of Hospice & Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909117743474" target="_blank" rel="noreferrer noopener">10.1177/1049909117743474</a>
Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.
Female; Humans; Male; Family; Withholding Treatment; Aged; Middle Aged; Interdisciplinary Communication; Severity of Illness Index; patient care team; decision making; retrospective studies; advance care planning; DNAR; quality of life; DNAR Outcomes; referral and consultation; Advance Directives; Palliative Care/mt [Methods]; Heart Failure/th [Therapy]; Heart-Assist Devices; Left/th [Therapy]; Right/th [Therapy]; Ventricular Dysfunction
OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS: We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010., RESULTS: Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists., CONCLUSION: Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate.
Swetz K M; Freeman MR; AbouEzzeddine OF; Carter Kari A; Boilson BA; Ottenberg AL; Park Soon J; Mueller PS
Mayo Clinic Proceedings
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.4065/mcp.2010.0747" target="_blank" rel="noreferrer">10.4065/mcp.2010.0747</a>
Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family
Humans; Consensus; Withholding Treatment; Communication; Life Support Care; Physician's Role; Nurse's Role; Professional-Patient Relations; Disclosure; Empirical Approach; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Interviews; decision making; Family/psychology; Practice Guidelines
BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision making about withdrawing life-sustaining treatments, we investigated which physician and nurse behaviors families find supportive and which behaviors increase the family's burden. METHODS: We conducted intensive 1- to 2-hour-long individual interviews using a semistructured interview protocol with 32 family members of patients without advance directives whose deaths followed a stay in the intensive care unit and withdrawal of treatment. We analyzed more than 700 pages of verbatim interview data using content analysis techniques and achieved more than 90% interrater agreement on data codes. RESULTS: Themes emerged as families identified selected physician and nursing behaviors as helpful: encouraging advanced planning, timely communication, clarification of families' roles, facilitating family consensus, and accommodating family's grief. Behaviors that made families feel excluded or increased their burden included postponing discussions about treatment withdrawal, delaying withdrawal once scheduled, placing the full burden of decision making on one person, withdrawing from the family, and defining death as a failure. CONCLUSIONS: Study findings provide an increased understanding of the unmet needs of families and serve to guide physicians and nurses in reducing actions that increase families' burdens as they participate in treatment withdrawal decisions.
1995
Tilden VP; Tolle SW; Garland MJ; Nelson CA
Archives Of Internal Medicine
1995
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/archinte.1995.00430060097012" target="_blank" rel="noreferrer">10.1001/archinte.1995.00430060097012</a>