The provision of intensive care enables the lives of neonates, infants and children to be sustained or extended in circumstances previously regarded as impossible. However, as well as benefits, such care may confer burdens that resultingly frame continuation of certain interventions as futile, conferring more harm than or any, benefit. Subsequently, clinicians and families in the paediatric intensive care unit are often faced with decisions to withdraw, withhold or limit intensive care in order to act in the best interests of (...) the child. An integral consideration in respect of these decisions is that futility is a concept that has to be contextualised for all those involved. Recent high-profile legal cases highlight the professional, clinical, legal and social conflicts that can arise when parents and clinicians have different interpretations of futility. In acknowledging the complexity of these conflicts for clinicians, this paper aims to support a better understanding of futility as an integral concept in such difficult and emotive decisions within professional practice. We utilise the concept of futility to frame how these decisions to withdraw or withhold certain invasive life-prolonging interventions are ethically and legally justifiable, even when they disagree or conflict with parental views. To support clinicians in understanding these decisions, we in part use the familiar bioethical framework of Principlism developed by Beauchamp and Childress. We suggest that understanding legal and ethical analysis of futility ultimately will help clinicians in approaching and reflecting on such decision-making. (shrink)

There have been ongoing debates as to how, or even whether, we should clinically classify gender diversity in children through clinical classification manuals. So‐called ‘depathologizing’ is argued as being vital to address the stigma that these children are somehow disordered or sick. Yet one argument in favour of continued clinical classification for transgender and gender non‐conforming children is that it better facilitates access to specialist psychological support. I argue that whilst continued clinical classification offers a seemingly pragmatic solution to ensuring (...) access, it does in fact obscure our understanding of the individual needs of these children. In this paper I address fundamental issues that aim to better our understanding of need and thus why a child may benefit from specialist support. I do so by critiquing a paper I nearly wrote, which argued for the ongoing continued classification of gender incongruence in children. Ultimately, I argue that specialist psychological support and care should be driven by the needs of the individual child, as determined by the child and those involved with their care. By bettering our understanding as to why specialist psychological support may be beneficial for some, we move past the focus of such specialist support being provided because of the child’s gender diversity. Methodologically the paper may be unusual, in comparison to traditional normative counter‐argumentative bioethical position papers, but by presenting an argument for depathologization of gender diversity of children in this way there is also an alternative insight into the methods of bioethics. (shrink)

In the case of controversial interventions there is a need for clinical guidelines to be founded on ‘expert opinion’ and an evidence base, in order to minimise individual clinicians making subjective decisions influenced by bias or cultural norms. This paper considers international clinical guidelines that through recommendation effectively prohibit the provision of genital-alignment surgery for competent adolescents with gender dysphoria. I argue that although the rationale for this particular guideline is based on serious concerns, these need to be better understood (...) to allow reconsideration of this unilateral prohibitive recommendation. I do not propose that genital-alignment surgery should be prima-facia provided for any adolescent with gender dysphoria. Instead I argue that by developing our understanding of the current concerns, we can allow guidelines to incorporate a margin of clinical discretion, to allow clinicians to provide genital-alignment surgery to some adolescents, where clinically appropriate. In facilitating this we can move towards establishing a solid evidence-base. The basis of this position is that clinical guidelines and medical practice should treat these young people with the same standards of evidence-based care as others who have less controversial conditions. Whilst this paper uses English law and UK professional regulation for context, many of the ethical, legal and professional issues highlighted are applicable to other jurisdictions. (shrink)