Birth asphyxia is the most common single cause of death in term newborn infants. The majority of deaths in developed countries follow decisions to withdraw intensive care. Recent technological advances, particularly the use of magnetic resonance imaging (MRI) of the brain, may affect the process of prognostication and decision-making. There is little existing evidence about how prognosis is determined in newborn infants and how this relates to treatment withdrawal decisions.An exploratory qualitative study was performed using in-depth semi-structured interviews with a (...) sample of ten neonatologists from tertiary intensive care units in the UK. Participants were purposively selected to ensure a range of experience and type of unit. They were asked about the process of prognostication for infants with birth asphyxia and decisions about treatment withdrawal. Interviews were transcribed and thematically analysed.MRI played a significant role in decision-making about life-sustaining treatment for a number of clinicians. Clinicians did not identify particular ethical concerns related to MRI, though wider discussion revealed issues relating to uncertainty around predictions, the timing of prognostication and decision-making, and difficulty in predicting quality of life. (shrink)

BackgroundAs the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enrol their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research, which allows them to articulate their views in their own words.DiscussionParents want to do their best for their children, and socially and legally their role is to care for (...) and protect them yet the complexities of the medical and research context can challenge their fulfilment of this role. Parents are simultaneously responsible for their child and cherish this role yet they are dependent on others when their child becomes sick. They are keen to exercise responsibility for deciding to enter a child in a trial yet can be fearful of making the 'wrong' decision. They make judgements about the threat of the child's condition as well as the risks of the trial yet their interpretations often differ from those of medical and research experts. Individual parents will experience these and other complexities to a greater or lesser degree depending on their personal experiences and values, the medical situation of their child and the nature of the trial. Interactions at the time of trial recruitment offer scope for negotiating these complexities if practitioners have the flexibility to tailor discussions to the needs and situation of individual parents. In this way, parents may be helped to retain a sense that they have acted as good parents to their child whatever decision they make.SummaryDiscussing randomised controlled trials and gaining and providing informed consent is challenging. The unique position of parents in giving proxy consent for their child adds to this challenge. Recognition of the complexities parents face in making decisions about trials suggests lines for future research on the conduct of trials, and ultimately, may help improve the experience of trial recruitment for all parties. (shrink)

Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should parents decide whether (...) to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child. (shrink)

Background: Lay persons’ judgements of the acceptability of the not uncommon practice of ending the life of a damaged neonate have not been studied. Methods: A convenience sample of 1635 lay people in France rated how acceptable it would be for a physician to end a neonate’s life—by withholding care, withdrawing care, or active euthanasia—in 54 scenarios in which the neonate was diagnosed either with perinatal asphyxia or a genetic abnormality. The scenarios were all combinations of four factors: three levels (...) of maturity or immaturity, three levels of severity of the health problem, three levels of parents’ preference concerning prolonging care and two levels of decision-making (with or without consulting the other caregivers). Analyses: Analyses of variance of the participants’ responses were performed to determine the importance of each factor; the interactions among factors, with methods of ending life and with other patient characteristics; and the differences between asphyxia and genetic abnormality. A cluster analysis was performed to look for groups with different patterns of responses. Results: Lay people assigned most importance to the parents’ request and to the severity of the problem. Except for a small group (12%) always opposed to ending life, they used a simple additive-type rule in integrating the information. Implications: Most of this sample of French lay people are not categorically for or against ending the life of a damaged neonate, but judge its degree of acceptability by adding up those factors that seem most salient to them. (shrink)

As a field, ethics is driven by the desire to help guide human life and human activities. Yet, what are the standards or guideposts indicating that a given policy or practice change actually contributes meaningfully to such desires and aspirations? In other words, how do we know if we have achieved meaningful ethical outcomes and enactment processes? Unfortunately, there are many examples of ethically oriented actions that were well intentioned but carried out in a way that undermined some of the (...) values they intended on promoting or led to unexpected undesirable outcomes. In this paper, building on an account of ethics as a pragmatist pursuit of deliberative wisdom, I identify and discuss four procedural guideposts which can help evaluate if a process of inquiry is an ethical one oriented toward human flourishing. First, situational awareness and continuity designates the need to keep in sight the nature of the situation at stake to ensure that the enactment process does not derail from a cardinal human flourishing orientation. Second, a meaningful ethical enactment should distribute opportunities for participation such that it is not only one’s autonomy (e.g., the ethicist) that is developed and exercised but that positive relationships are also fostered through the growth of others. Third, enactments must strive for more than simple avoidance of encroachment of wrongs but aim for the promotion of praiseworthy practices that pursue what is envisioned as being the better and most compelling vision. Fourth, an ethics process should be conducive of personal growth and mutual learning. (shrink)