CYIL vol. 13 (2022)

CYIL 13 ȍ2022Ȏ FUTILE MEDICAL CARE: CHILDREN, PARENTS AND COURTS but also as regards the means of striking a balance between the protection of patients’ right to life and the protection of their right to respect for their private life and their personal autonomy (…). However, this margin of appreciation is not unlimited (…) and the Court reserves the power to review whether or not the State has complied with its obligations under Article 2 .” 9 It then came to the conclusion that French law and French courts engaged in Mr. Lambert’s case had complied with these fundamental requirements. 10 1.2.2 Charlie Gard In 2016, Charles (“Charlie”) Gard was born in the United Kingdom with a serious genetic disease (mitochondrial DNA depletion syndrome), due to which he was unable to move, had to be artificially ventilated and fed and was undergoing frequent epileptic seizures. He had to permanently stay in a hospital. The doctors saw no hope of cure and suggested to end the prolongation of his life. His parents, however, disagreed, due to a hope for experimental nucleoside therapy in the United States. 11 The doctors were against it, because in their opinion it would amount to nothing more than continuation of the patient’s suffering. Under English law, courts have so-called inherent jurisdiction to declare whether a particular procedure concerning a child is in the child’s best interest and lawful, and the hospital asked for such ruling. The court of first instance held that while parents had full parental responsibility, the court must consider the issue from the viewpoint of the child and the child’s best interest. 12 The court has to take into account medical and emotional aspects, the patient’s pain and suffering, instinct for survival etc. 13 A strong presumption in favour of prolongation of life exists, but it is not irrefutable. 14 After consideration of all factors the court may hold that further interference with the patient’s integrity by life-sustaining treatment may not be in the best interest of the patient, and consequently may be, in the absence of the patient’s consent, unlawful. 15 Charlie clearly lacked capacity to make his own decisions. The court held that 9 Ibid., paragraphs 147 to 148. 10 “[T]he Court has found both the legislative framework laid down by domestic law, as interpreted by the Conseil d’État, and the decision-making process, which was conducted in meticulous fashion in the present case, to be compatible with the requirements of Article 2. As to the judicial remedies that were available to the applicants, the Court has reached the conclusion that the present case was the subject of an indepth examination in the course of which all points of view could be expressed and all aspects were carefully considered, in the light of both a detailed expert medical report and general observations from the highestranking medical and ethical bodies.” Ibid, paragraph 181. 11 Charlie’s parents accepted that his life was not worth living in the quality it had; it was the hope for experimental cure on which their position was based. Cf. judgment of the High Court of 11 April 2017, Great Ormond Street Hospital v. Constance Yates, Chris Gard and Charles Gard , [2017] EWHC 972 (Fam), paragraph 48. 12 Judgment of the High Court of 11 April 2017, Great Ormond Street Hospital v. Constance Yates, Chris Gard and Charles Gard , [2017] EWHC 972 (Fam). According to paragraph 36 of the decision, “overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests.” 13 Cf. judgment of the High Court of 15 March 2006, An NHS Trust v. MB (A Child represented by CAFCASS as Guardian ad Litem) , [2006] EWHC 507 (Fam). 14 Cf. judgment of the Court of Appeal of 12 October 2005, Wyatt v. Portsmouth NHS Trust , [2005] EWCA Civ 1181, [2006] 1 FLR 554. 15 “[T]he fundamental question is whether it is lawful to give the treatment, not whether it is lawful to withhold it. In Bland, Lord Goff (with whose judgment Lord Keith and Lord Lowry expressly agreed) pointed out that ‘the question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of treatment’ … If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful

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