International variations in application of the best-interest standard across the age spectrum (original) (raw)
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Provider Perspectives Regarding Resuscitation Decisions for Neonates and Other Vulnerable Patients
The Journal of Pediatrics, 2017
Objectives To use structured surveys to assess the perspectives of pediatric residents and neonatal nurses on resuscitation decisions for vulnerable patients, including neonates. Study design Pediatric providers were surveyed using scenarios for 6 critically ill patients of different ages with outcomes explicitly described. Providers were asked (1) whether resuscitation was in each patient's best interest; (2) whether they would accept families' wishes for comfort care (no resuscitation); and (3) to rank patients in order of priority for resuscitation. In a structured interview, each participant explained how they evaluated patient interests and when applicable, why their answers differed for neonates. Interviews were audiotaped; transcripts were analyzed using thematic analysis and mixed methods. Results Eighty pediatric residents and neonatal nurses participated (response rate 74%). When making life and death decisions, participants considered (1) patient characteristics (96%), (2) personal experience/biases (85%), (3) family's wishes and desires (81%), (4) disease characteristics (74%), and (5) societal perspectives (36%). These factors were not in favor of sick neonates: of the participants, 85% reported having negative biases toward neonates and 60% did not read, misinterpreted, and/or distrusted neonatal outcome statistics. Additional factors used to justify comfort care for neonates included limited personhood and lack of relationships/attachment (73%); prioritization of family's best interest, and social acceptability of death (36%). When these preconceptions were discussed, 70% of respondents reported they would change their answers in favor of neonates. Conclusions Resuscitation decisions for neonates are based on many factors, such as considerations of personhood and family's interests (that are not traditional indicators of benefit), which may explain why decision making is different for the neonatal population. (J Pediatr 2017;■■:■■-■■). See editorial, p ••• T he majority of pediatric deaths occur in intensive care units, 1,2 most often after a decision to limit life-support. 3-7 These decisions, made by parents and providers, are among the hardest decisions in pediatrics. Evaluating the interest of children is complex. 8,9 Some authors invoke their best interests, 10 others "good enough" or "not unreasonable" interests, 11 and for others, avoiding harm is the main goal. 12 When an intervention is in the interest of a child and nonintervention places a child at significant harm, the intervention is generally considered as being legally and ethically preferable. Empirical investigations have demonstrated that neonates are treated differently when life and death decisions are made. 13-25 In questionnaire studies, scenarios of critically ill incompetent patients of different ages were presented with outcomes explicitly described. Although many respondents evaluated that resuscitation was in the interest of neonates, a larger proportion estimated that resuscitation was in the interest of older patients with similar or worse outcomes. 14-22 For older patients, a family's request for comfort care was rarely accepted when respondents evaluated resuscitation to be in a patient's interest. On the other hand, comfort care was generally accepted for neonates, despite estimating that resuscitation was in their interest. 14-22 This differential treatment seems to transcend culture and has been demonstrated in 7 culturally different countries, 18 in a large nonmedical population, 14 among pediatricians who do not work in neonatology 16 and among physicians who do not work in pediatrics. 20 In none of these studies were participants asked to explain their answers. The goal of this study was to investigate how providers evaluate the interests of vulnerable patients and why their decision making differs for neonates. Methods A mixed methods sequential explanatory design was used. First, participants answered a questionnaire that has been validated, widely used, and systematically NICU Neonatal intensive care unit
Swiss medical weekly, 2006
How do actual aspects of forgoing life supporting therapy (LST) in newborn infants compare with national ethical directives in a Swiss intensive care unit? A prospective set of data on deaths after forgoing LST over a three year period in a single intensive care unit is analysed in view of the directives issued by the Swiss Academy for Medical Sciences (SAMS). Thirty-four newborn infants died after a decision to forgo LST, 21 after withdrawing and 13 after withholding. The decision making process was confined to the caregivers' team. Parents rarely initiated the discussion but participated in all decisions and were considered as willing in 32% and consenting in 68%. Futility was invoked in 79% of cases and poor developmental outcome in 21%. Respiratory support was forgone in 59%, circulatory support in 6% and both in 35%. The mother assisted the child at the time of death in 91%. At that time, 82% of infants were receiving opiates and 18% benzodiazepines, some in a higher than u...
The Mathematics of Morality for Neonatal Resuscitation
Clinics in Perinatology, 2012
We have discussed in this chapter ethical issues surrounding the resuscitation of infants who are at great risk to die or survive with significant morbidity. We have introduced data regarding three separate aspects of the morality of resuscitation for these infants-money, outcomes, and prediction. We have demonstrated that there are no credible financial arguments against NICU care for infants born at the border of viability-rather, the NICU is a bargain in terms of dollars devoted to infants who will survive to discharge as opposed to die in hospital. Moreover, the NICU is particularly cost-effective when compared with medical interventions in adults. We have noted that of the four possible outcomes after birth (comfort care, death in the NICU, survival with NDI, survival without NDI), gestational age influences some (death in the NICU) much more than others (percentage of survivors with NDI). Consequently, for parents who view 'giving their child a chance' by starting NICU intervention as a worthwhile option, counseling about resuscitation as a function of gestational age appears to have limited support from the data. Finally, we have noted that prediction is possible at four stages of the resuscitation process-before birth (antenatal counseling), in the delivery room, in the NICU while the child remains on the ventilator (when there are ethical alternatives to continued NICU intervention-namely extubation and palliative care), and at the time of discharge. We have presented data suggesting that antenatal and delivery room predictions are inadequately accurate, and prediction at the time of discharge is too late. Rather, we suggest that learning about individual infants from data collected during the trajectory of their own NICU experience (specifically, abnormal head ultrasound and healthcare professional intuitions that the child will 'die before discharge') can offer a positive predictive value of >95% for the combined outcome of death or survival with neuro-developmental impairment. This predictive value is worth talking about.
Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstétrique et gynécologie du Canada : JOGC, 2011
Across Canada, the rate of preterm birth (i.e., at < 37 weeks' gestation) has been steadily increasing. Advances in perinatal medicine and neonatal intensive care have resulted in an increased capacity to intervene at the extremes of prematurity, leading to an increase in the overall survival of infants born at early gestations. There has been little corresponding decrease in long-term complications. As a result, additional stresses are placed on neonatal intensive care units across the country, impacting families, health care professionals, and society as a whole. Moral distress and moral residue are often cited in the neonatal-perinatal literature as stressors experienced by those who participate in the resuscitation decision-making process. They are directly related to the challenge of making a concrete decision about life and death at extremely early gestations in the context of long-term uncertainty. In this review, we performed a systematic search of medical and ethics ...