Is 'best interests' the right standard in cases like that of Charlie Gard?

Savulescu and colleagues have provided interesting insights into how the UK public view the 'best interests' of children like Charlie Gard. But is best interests the right standard for evaluating these types of cases? In the USA, both clinical decisions and legal judgments tend to follow the 'harm principle', which holds that parental choices for their children should prevail unless their decisions subject the child to avoidable harm. The case of Charlie Gard, and others like it, show how the USA and the UK have strikingly different approaches for making decisions about the treatment of severely disabled children.

Clinic, courtroom or (specialist) committee: in the best interests of the critically Ill child?

Law's processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts' decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts' apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services - and into generalist ethics support services - in order to gauge whether this is indeed a promising development.

Premortem interventions in dying children to optimise organ donation: an ethical analysis.

A range of interventions in dying patients can improve both the possibility of successful organ donation and the likely long-term success of transplantation. The ethical and legal issues surrounding such interventions, which most frequently occur in the context of donation after circulatory determination of death, are complex, controversial and many remain unresolved. This is true with adults, but even more so with children, where the issue of organ donation and premortem interventions to facilitate it, are highly sensitive. Essentially, such interventions are being undertaken in dying children who cannot medically benefit from them, though arguments have been advanced that becoming a donor might be in a child's extended best interest. However, certain interventions carry a potential risk, although small, of direct harm and of course overall objections to child donation after circulatory determination of death per se are still expressed in the literature. But, unlike the case in critically ill adults, those giving permission for such interventions are normally able to fully participate in decision-making, and indeed to consent, to both donation and premortem interventions. We review the issue of the use of premortem interventions in dying children to facilitate organ donation, including decision-making and ethical justification. Individual interventions are then considered, including an ethical analyse of their use. Finally, we recommend an approach using a combination of welfare checklist strategy, coupled with the establishment of an agreed zone of parental discretion about individual interventions which might be used in dying children to increase the possibility of successful organ donation.

Parents who wish no further treatment for their child.

BACKGROUND: In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. OBJECTIVE: To discuss who can best protect a child's interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. METHODS: We describe the case of a 3-year-old boy with acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. CONCLUSIONS: Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team.

The acceptability among young Hindus and Muslims of actively ending the lives of newborns with genetic defects.

AIM: To explore the views in non-Western cultures about ending the lives of damaged newborns. METHOD: 254 university students from India and 150 from Kuwait rated the acceptability of ending the lives of newborns with genetic defects in 54 vignettes consisting of all combinations of four factors: gestational age (term or 7 months); severity of genetic defect (trisomy 21 alone, trisomy 21 with serious morphological abnormalities or trisomy 13 with impending death); the parents' attitude about prolonging care (unknown, in favour or opposed); and the procedure used (withholding treatment, withdrawing it or injecting a lethal substance). RESULTS: Four clusters were identified by cluster analysis and subjected to analysis of variance. Cluster I, labelled 'Never Acceptable', included 4% of the Indians and 59% of the Kuwaitis. Cluster II, 'No Firm Opinion', had little variation in rating from one scenario to the next; it included 38% of the Indians and 18% of the Kuwaitis. In Cluster III, 'Parents' Attitude+Severity+Procedure', all three factors affected the ratings; it was composed of 18% of the Indians and 16% of the Kuwaitis. Cluster IV was called 'Severity+Parents' Attitude' because these had the strongest impact; it was composed of 40% of the Indians and 7% of the Kuwaitis. CONCLUSIONS: In accordance with the teachings of Islam versus Hinduism, Kuwaiti students were more likely to oppose ending a newborn's life under all conditions, Indian students more likely to favour it and to judge its acceptability in light of the different circumstances.

Yes, the baby should live: a pro-choice response to Giubilini and Minerva.

In their paper 'After-birth abortion: why should the baby live?' Alberto Giubilini and Francesca Minerva argue that because there are no significant differences between a fetus and a neonate, in that neither possess sufficiently robust mental traits to qualify as persons, a neonate may be justifiably killed for any reason that also justifies abortion. To further emphasise their view that a newly born infant is more on a par with a fetus rather than a more developed baby, Giubilini and Minerva elect to call this 'after-birth abortion' rather than infanticide. In this paper, I argue that their thesis is incorrect, and that the moral permissibility of abortion does not entail the moral permissibility of 'after-birth' abortion.

The fragility of freedom of speech.

Freedom of speech is a fundamental liberty that imposes a stringent duty of tolerance. Tolerance is limited by direct incitements to violence. False notions and bad laws on speech have obscured our view of this freedom. Hence, perhaps, the self-righteous intolerance, incitements and threats in response to Giubilini and Minerva. Those who disagree have the right to argue back but their attempts to shut us up are morally wrong.