The four thoughtful commentaries on our feature article draw out interesting empirical and normative questions. The aim of our study was to examine the views of a sample of the general public about a set of cases of disputed treatment for severely impaired infants.1 We compared those views with legal determinations that treatment was or was not in the infants’ best interests, and with some published ethical frameworks for decisions. We deliberately did not draw explicit ethical conclusions from our survey (...) findings, both because of the acknowledged limitations of survey methodology, and because survey conclusions cannot, in themselves, yield answers about what the right threshold should be for providing or withholding treatment.2 In this brief response, we are going to address head-on the important ethical question raised within our survey – when life is worth living for an infant. We follow-up on the suggestion of two commentators that the presence or absence of “relational potential” might be ethically important to report in studies of the outcome of severely impaired infants,3 and to whether parental requests for treatment should be supported.4 The notion of “relational potential” was introduced by John Arras in a 1984 commentary.5 Arras was responding to the Baby Doe Regulations and a …. (shrink)

Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child’s best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician’s primary ethical duty to the paediatric patient. This approach does (...) not consider a clinician’s potential duty to the patient’s family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions. (shrink)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continueorwithdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (shrink)

Suffering is a ubiquitous yet elusive concept in health care. In a field devoted to the pursuit of objective data, suffering is a phenomenon with deep ties to subjective experience, moral values, and cultural norms. Suffering’s tie to subjective experience makes it challenging to discern and respond to the suffering of others. In particular, the question of whether a child with profound neurocognitive disabilities can suffer has generated a robust discourse, rooted in philosophical conceptualizations of personhood as well as the (...) academic and experiential expertise of practiced health-care professionals. The issue remains unresolved because it is difficult, perhaps impossible, to ever truly know an infant’s lived experience. But what if this is not the best question? What if instead of asking “can this infant suffer?” the discourse is broadened to ask “is there suffering here?” This latter question demands attention to patients’ subjective experiences of suffering, but also to the web of relationships that envelop them. Without losing sight of the importance of patients’ experiences, consideration of their relationships may elucidate the presence of suffering when the patients themselves are unable to provide the same clarity. In this essay, care ethics frames an examination of how suffering manifests in the loving and caring relationships that surround an infant with profound neurocognitive disabilities, changing those relationships and affecting the individuals within them. Exploring suffering through these relationships may offer clarity on the presence and content of suffering for infants with profound cognitive disabilities, in turn offering moral guidance for responding to suffering and supporting flourishing in this context. (shrink)

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public (...) policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity. The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high (as is the case for questions about withdrawing life-sustaining therapy from infants over parental objections), use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority. Even if the sampled population were more …. (shrink)

In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a “good death” for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, between accounts of a good death that minimally and maximally promote the dying child’s interests. I propose a narrowed account of the dying child’s interests, because they differ from the interests of non-dying children. Importantly, this account illustrates how disagreements at the (...) end of a child’s life are sometimes the result of a shift from a future to a present-oriented understanding of the child’s interests on the part of some stakeholders but not others, and sometimes the result of a values-based disagreement about how different interests should be weighted. This brings into sharper focus the questions of for whom, and in what way, a child’s death might be considered good. (shrink)

In “The Relational Potential Standard,” in this issue of the Hastings Center Report, Aaron Wightman and colleagues propose “relational potential” as an addition to existing standards that are employed in making difficult decisions regarding life‐sustaining treatment for children with profound cognitive disabilities. They offer compelling explanations for why the expanded standard is important and why an approach grounded in an ethics of care is both necessary and justified. In what follows, I would like to explore asymmetries that emerge from their (...) account: between clinician and parent and between child and parent. “Asymmetry” is a term invoked in the context of disability, often as a marker of something undesirable, abnormal, pathological. Yet asymmetry may also be generative and worthy of attention, and in some cases, something to be embraced. My aim here is to argue that an important dimension of humility in the face of disability lies in recognizing these asymmetrical relationships and responding to them with care. (shrink)

BackgroundMedia have increasingly reported on the difficulties associated with end-of-life decision-making in patients with Disorders of Consciousness (DOC), contextualizing such dilemma in detailed accounts of the patient’s life. Two of the first stories debated in the scientific community were those related to the cases of two women, one American, the other Italian, who captured attention of millions of people in the first years of this third millennium.MethodsMuch has been written about the challenges of surrogate decision-making for patients in DOC, but (...) less has been written comparing these challenges across legal systems and cultures. In our paper, we propose a systematic analysis of the final legal documents written by the American and Italian Courts in relation to the two cases, developing our discussion around three areas: the level of certainty/reliability of diagnosis and prognosis, the reconstruction of self-expression, time of illness and time of care. They are examples of the typical issues discussed by legal authors and allow us to understand the link and the difference between the legal and ethical perspectives.ResultsThe legal approach to the two cases has some common elements: the need to be certain about the diagnosis and prognosis and the fact that the clinical criteria are necessary in determining the most appropriate treatments, although these criteria are not sufficient unless they are supplemented by the patient’s will. The issue of relations takes on importance both from a legal and an ethical point of view, but from two different perspectives. While ethics safeguards relationships by guaranteeing their differences and makes them reconcilable, law safeguards relationships by guaranteeing the cold forms of respect, equality, impartiality, symmetry, reciprocity, and irreversibility. In this perspective, the link between the time of care and the decision of the family members assumes importance.ConclusionsThe most interesting point that emerges from our analysis is the issue of relationships and how they affect decisions, both from a legal and ethical point of view. For this reason, during the patients’ hospitalization, it is necessary to identify ways in which they might give their opinion about the moral issues underlying their choices. (shrink)

In an article in this issue of the Hastings Center Report, Aaron Wightman and his coauthors attempt to address health care providers’ moral distress about acceding to parents’ requests to provide life‐sustaining medical treatment to children who have profound cognitive disabilities. They propose combining John Arras's relational potential standard and care ethics, and they argue that the capacity for caring relationships can provide an independent moral justification for honoring such requests. This combination is, however, unstable. Wightman et al.'s language of (...) potential and capacity opens the possibility of substantial misinterpretation. They rely on epistemological and prognostic uncertainty to argue that reciprocity and participation may be present in the parent‐child relationship even when the child's engagement cannot be observed. The terminology suggests that these are characteristics that can be gained or lost rather than characteristics of being born within certain social practices. In contrast, Eva Feder Kittay illuminates family membership as an important social relation. Her articulation of the independent moral value of parenting stands on its own without being conjoined to Arras's position. (shrink)

Alongside clinical practice, medical schools now confront mounting reasons to examine nontraditional approaches to ethics. Increasing awareness of systems of oppression and their effects on the experiences of trainees, patients, professionals, and generally on medical care, is pushing medical curriculum into an unfamiliar territory. While there is room throughout medical school to take up these concerns, ethics curricula are well-positioned to explore new pedagogical approaches. Feminist ethics has long addressed systems of oppression and broader structures of power. Some of its (...) established concepts can offer distinct value as medical climates change and adapt in response to increased awareness of the experiences of marginalized individuals and populations. In this essay, we offer a set of concepts from feminist ethics that have a fundamental role to play in medical school curriculum: relationality, relational autonomy, and epistemic justice. Though these concepts are not exhaustive, they can be taught in tandem with the concepts that have historically grounded ethics education in medical school, such as autonomy and beneficence. Ultimately, we contend that these concepts hold particular value in ethics curriculum insofar as they diversify mainstream ethical approaches, directly address the pervasiveness of systems of oppression in medicine, and recognize the voices and concerns that may be marginalized in standard approaches. (shrink)