Cave Emma, Nottingham Emma
School of Law, Durham University, Durham, UK.
Law Department, The University of Winchester, Winchester, UK.
Med Law Rev. 2018 Aug 1;26(3):500-513. doi: 10.1093/medlaw/fwx060.
When baby Charlie Gard was diagnosed with a rare mitochondrial disease, his parents located a Professor of Neurology in the USA willing to provide nucleoside therapy which offered a theoretical chance of improvement and successfully raised £1.3 million through crowd funding. The decision that unproven therapy was contrary to Charlie Gard's best interests and that life-sustaining treatment should be withdrawn was devastating for his parents and difficult for their supporters to comprehend. The decision was upheld at three levels of appeal and Charlie died in July 2017 aged 11 months. This commentary provides a critical analysis of the legal principles surrounding unproven treatment and application of the best interests test in the different contexts of hospital and court. It draws attention to conflicting guidance and explores differences in approach in relation to unproven treatment for adults lacking capacity and children.
当小查理·加德被诊断出患有一种罕见的线粒体疾病时，他的父母找到了美国一位神经学教授，该教授愿意提供核苷疗法，这提供了理论上的改善机会，并且他们通过众筹成功筹集了130万英镑。未经证实的疗法不符合查理·加德的最大利益且应停止维持生命治疗的决定，对他的父母来说是毁灭性的，对其支持者而言也难以理解。该决定在三级上诉中均得到维持，查理于2017年7月去世，年仅11个月。本评论对围绕未经证实的治疗的法律原则以及在医院和法庭不同背景下最佳利益测试的应用进行了批判性分析。它提请注意相互冲突的指导意见，并探讨了针对无行为能力的成年人和儿童的未经证实治疗在处理方式上的差异。
