CYIL vol. 13 (2022)

TOMÁŠ HOLČAPEK CYIL 13 ȍ2022Ȏ it was in his best interest to terminate the artificial ventilation and provide him with only palliative care. The judgment was upheld on appeal 16 , permission for further appeal was refused. The parents filed an application to the European Court of Human Rights, based on an asserted breach of Articles 2, 5, 6 and 8 of the European Convention on Human Rights. Their application was held manifestly ill-founded and as a result inadmissible. 17 According to the court, Article 2 of the Convention does not require specific regulation of access to experimental therapy. For the ending of treatment, it is necessary that proper legal rules exist, that the patient’s wishes, those of his or her family and medical professionals’ opinions are taken into account and that there is a possibility to have doubts about the best interest of the patient resolved judicially. 18 The court acknowledged that the best interests of the child were of paramount concern 19 , but at the same time, the member states were afforded a margin of appreciation to establish proper balance between the protection of the patient’s various rights 20 . While withdrawal of life sustaining treatment may interfere with rights under Article 8 of the Convention, it may be held legitimate if it is in accordance with national law, pursues a legitimate aim (such as prevention of unnecessary suffering) and is necessary in a democratic society. 21 1.2.3 Alfie Evans A similar case to that of Charlie Gard arose with regard to Alfie Evans. He was born in 2016 as well and suffered from an untreatable and progressive neurodegenerative condition. Due to the illness, he had to be artificially ventilated and had spasms. Health professionals wanted to discontinue the ventilation support; Alfie’s parents sought to have him transferred to a hospital in Rome, not for any particular curative treatment but rather to just keep him alive. Like in Charlie Gard’s case, the hospital applied for a judicial decision to have the withdrawal of ventilation approved. The court of first instance granted the desired relief. 22 On appeal, the parents argued that instead of the best interests test, a different legal standard should have been applied – that of whether there is significant harm to the child when proceeding according to the parents’ wishes. 23 But this argument did not convince the appellate court and the parents’ appeal to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it.” Judgment of the Supreme Court of 30 October 2013, Aintree University Hospitals NHS Foundation Trust v. James , [2013] UKSC 67, paragraphs 20 to 22. 16 Judgment of the Court of Appeal of 23 May 2017, Constance Yates and Chris Gard v. Great Ormond Street Hospital and Charles Gard , [2017] EWCA Civ 410. 17 Decision of the European Court of Human Rights of 27 June 2017, Gard and Others v. the United Kingdom , app. no. 39793/17.

18 Thus following the reasoning in Lambert v. France ; see above. 19 Gard and Others v. the United Kingdom, paragraph 118. 20 Ibid., paragraph 84. 21 Ibid., paragraphs 110-124.

22 Judgment of the High Court of 20 February 2018, Alder Hey Children’s NHS Foundation Trust v. Mr. Thomas Evans, Ms. Kate James, Alfie Evans (A Child by his Guardian CAFCASS Legal) , [2018] EWHC 308 (Fam), [2018] 2 FLR 1223. 23 For a more detailed discussion in the English legal context cf. GOOLD, I., HERRING, J., AUCKLAND, C. et al. Parental Rights, Best Interests and Significant Harms. Medical Decision-Making on Behalf of Children Post Great

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