ABSTRACT

In many domains there are tensions between the rights and interests of children, parents and the state. In medical law this has come under scrutiny in England and Wales when considering how parental choice can be accommodated in best interests decision-making in relation to the care of critically ill children. This follows a series of high-profile court cases and, in February 2020, the second reading of the Access to Palliative Care and Treatment of Children Bill in the House of Lords. Through a novel synthesis of source material I examine two key proposals in this Bill in relation to the treatment of children with a life-limiting illness: (i) that courts should assume that any medical treatment proposed by those with parental responsibility is in the child’s best interests unless it poses a disproportionate risk of significant harm; and (ii) that mediation between parents and health service providers should be mandatory. This analysis elucidates how the Bill, as currently drafted, would modify the ordinary best interests approach in relation to children with life-limiting illnesses both substantively and procedurally. Further, by widening the lens – from the Bill’s text to its context – I illustrate challenges inherent in translating the law into meaningful action on the ground, thus shifting the focus from (legal) text to the broader context.

摘要

在许多领域，儿童，父母和国家的权利之间存在紧张关系。在医疗法中，英格兰和威尔士在考虑如何将父母的选择权纳入与危重儿童的照料有关的最大利益决策时，已经进行了仔细审查。在此之前，一系列引人注目的法院案件以及2020年2月上议院对《获得姑息治疗和儿童待遇法案》的二读。通过新颖的原始资料综合，我研究了本条例草案中有关治疗患有生命有限疾病的儿童的两个关键建议：（i）法院应假定负有父母责任的人所提议的任何治疗均应在儿童的身体中进行。最大利益，除非构成重大损害的风险不成比例；（ii）父母与医疗服务提供者之间的调解应是强制性的。这项分析阐明了目前起草的该法案将如何实质性地和程序性地修改关于生命有限疾病儿童的普通最大利益方法。此外，通过扩大范围（从条例草案的案文到案文的上下文），我说明了将法律转化为实地有意义的行动，从而将重点从（法律）案文转移到更广泛的案文所固有的挑战。