School of Law University of Sheffield, Bartolome House, Winter Street, Sheffield S3 7ND, UK.
Med Law Rev. 2020 May 1;28(2):223-246. doi: 10.1093/medlaw/fwz017.
The Charlie Gard and Alfie Evans cases were high-profile cases involving disagreements between the parents of young infants and medical practitioners, which have given impetus to pre-existing calls for law reform that have been rebranded as 'Charlie's Law' and 'Alfie's Law'. I argue against the proposal to replace the best interest test, which is currently determinative in such contentious cases, with a significant harm test, as it would render UK law divergent from international law. I also employ critical theory to rebut the notion that parents are the best decision makers and refute criticisms of clinicians (who reflexively acknowledged the limits of medicine). I utilise theories of distributive justice to demonstrate that legal reform may exacerbate unfairness, and case law to show that it may be unworkable. Nonetheless, I apply critical and Foucauldian theory to critique the lack of patient and public empowerment within the NHS and I endorse the proposal to ensure that mediation is offered in contentious cases, as this may empower patients and their carers. I also aver that the best interests test should be informed by clearer criteria regarding the allocation of finite resources, which the public should influence via the democratisation of the NHS.
查理·加德（Charlie Gard）和阿尔菲·埃文斯（Alfie Evans）的案例是备受瞩目的案例，涉及到婴儿父母和医疗从业者之间的分歧，这为已经存在的法律改革呼吁提供了动力，这些呼吁被重新贴上了“查理的法律”（Charlie's Law）和“阿尔菲的法律”（Alfie's Law）的标签。我反对用重大伤害测试取代目前在这些有争议案件中起决定性作用的最佳利益测试，因为这将使英国法律与国际法不一致。我还运用批判理论反驳父母是最佳决策者的观点，并驳斥对临床医生（他们本能地承认医学的局限性）的批评。我利用分配正义理论来证明法律改革可能会加剧不公平，并利用判例法来证明它可能不可行。尽管如此，我还是运用批判和福柯理论来批评国民保健制度（NHS）中缺乏患者和公众的赋权，并赞同在有争议的案件中提供调解的提议，因为这可能会增强患者及其照顾者的权能。我还主张，最佳利益测试应该根据更明确的关于有限资源分配的标准进行告知，公众应该通过 NHS 的民主化来影响这些标准。
