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, 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)

I consider the current best interests of patients who were once thought to be either completely unaware (to be in PVS) or only minimally aware (MCS), but who, because of advanced fMRI studies, we now suspect have much more “going on” inside their minds, despite no ability to communicate with the world. My goal in this chapter is twofold: (1) to set out and defend a framework that I think should always guide thinking about the best interests of highly cognitively (...) compromised patients, and then (2) to defend a particular conclusion that applies to this specific patient population. The framework requires us to ask two questions: Is the individual suffering? Is the individual gaining any benefit from life? There must be benefit of some sort for life to be worth preserving, and the benefit must outweigh any suffering (if there is suffering present). I then argue it would be best overall to allow these patients to die. Either these patients are not really very aware at all, in which case they are most likely not suffering, but not benefiting from life either, or they are mentally intact enough to make benefit a theoretical possibility, but in fact they are not benefiting because they cannot communicate with anyone. Such patients would most likely suffer. As there is no way currently to address their suffering, we should allow them to die. No matter the truth about their cognitive lives, death would either be a neutral event, or a blessing. (shrink)

One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should intellectual disability (...) be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect. (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. 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 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 continue or withdraw 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)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

Caregivers should usually accede to parents’ requests for life-sustaining treatment. For such decision-making, the best interests standard is too limited. John Arras’s “relational potential standard,” con-joined to a contemporary care ethics framework, provides a better guide.

Clinicians are required to act in the best interest of neonates.However, it is not obvious that entry into a randomised controlled trial (RCT) is in a neonate’s best interest because such trials often involve additional onerous procedures (such as intramuscular injections) in return for which the neonate receives unproven treatment or a placebo.On the other hand, neonatology needs to develop its evidence base, and RCTs are central to this task. The solution posited here is based on two points. First, “best (...) interest” is not equivalent to “the best possible interest” only to “best interest within a certain realm”. The realm of deliberation when asking the title question is the neonate’s health. Deliberating in this realm may involve the exclusion from consideration of some factors that might be thought relevant (such as parental wealth). Furthermore, circumstances may dictate the need to deliberate on other factors that might be thought irrelevant (such as health care resources). Second, deciding on a neonate’s best interest does not involve “putting oneself in its shoes”. Rather, it involves asking in what it has an interest, or stake. These will include some things in which we all, as human beings, have a stake, such as medical progress. Putting these two points together, in the realm of health the answer to whether RCT entry is in a neonate’s best interest is usually very finely balanced. Where this is the case, it is reasonable to invoke a broader notion of best interest and include a broader range of elements in which the neonate has a stake, including medical progress. In this way RCT entry can, usually, be said to be in a neonate’s best interest. (Journal of Medical Ethics 2001;27:110–113) Keywords: Neonates; randomised controlled trials; best interest; ethics. (shrink)

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child’s future life? Third, if the life of (...) a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness. (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)

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)

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)