The Effects of Introducing a Harm Threshold for Medical Treatment Decisions for Children in the Courts of England & Wales: An (Inter)National Case Law Analysis.

The case of Charlie Gard sparked an ongoing public and academic debate whether in court decisions about medical treatment for children in England & Wales the best interests test should be replaced by a harm threshold. However, the literature has scantly considered (1) what the impact of such a replacement would be on future litigation and (2) how a harm threshold should be introduced: for triage or as standard for decision-making. This article directly addresses these gaps, by first analysing reported cases in England & Wales about medical treatment in the context of a S31 order, thus using a harm threshold for triage and second comparing court decisions about medical treatment for children in England & Wales based on the best interest test with Dutch and German case law using a harm threshold. The investigation found that whilst no substantial increase of parental discretion can be expected an introduction of a harm threshold for triage would change litigation. In particular, cases in which harm is limited, currently only heard when there are concerns about parental decision-making, may be denied a court hearing as might cases in which the child has lost their capacity to suffer. Applying a harm threshold for triage in decisions about withholding or withdrawing life-sustaining treatment might lead to a continuation of medical treatment that could be considered futile.

Reasons to Amplify the Role of Parental Permission in Pediatric Treatment.

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics (AAP) expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may (1) reveal facts and values relevant to their child's treatment, (2) encourage resistance to suboptimal default practices, (3) improve adherence to treatment, (4) nurture children's autonomy, and (5) promote the interests of other family members.

The harm threshold and Mill's harm principle.

The Harm Threshold (HT) holds that the state may interfere in medical decisions parents make on their children's behalf only when those decisions are likely to cause serious harm to the child. Such a high bar for intervention seems incompatible with both parental obligations and the state's role in protecting children's well-being. In this paper, I assess the theoretical underpinnings for the HT, focusing on John Stuart Mill's Harm Principle as its most plausible conceptual foundation. I offer (i) a novel, text-based argument showing that Mill's Harm Principle does not give justificatory force to the HT; and (ii) a positive account of some considerations which, beyond significant harm, would comprise an intervention principle normatively grounded in Mill's ethical theory. I find that substantive recommendations derived from Mill's socio-political texts are less laissez-faire than they have been interpreted by HT proponents. Justification for state intervention owes not to the severity of a harm, but to whether that harm arises from the failure to satisfy one's duty. Thus, a pediatric intervention principle derived from Mill ought not to be oriented around the degree of harm caused by a parent's healthcare decision, but rather, the kind of harm-specifically, whether the harm arises from violation of parental obligation. These findings challenge the interpretation of Mill adopted by HT proponents, eliminating a critical source of justification for a protected domain of parental liberty and reorienting the debate to focus on parental duties.