Information Note on the Court’s case-law 208

June 2017

Gard and Others v. the United Kingdom (dec.) - 39793/17

Decision 27.6.2017 [Section I]

Article 2

Positive obligations

Article 2-1

Life

Decision to withdraw life-sustaining treatment for infant child suffering from fatal genetic disease: inadmissible

Article 8

Article 8-1

Respect for family life

Decision to withdraw life-sustaining treatment for infant child a gainst parents’ wishes: inadmissible

Facts – The case concerned an infant (Charles Gard) suffering from a rare and fatal genetic disease. In February 2017 the treating hospital sought a declaration from the domestic courts as to whether it would be lawful to withdraw artificial ventilation and pro vide him with palliative care. His parents also asked the courts to consider whether it would be in the best interests of their son to undergo experimental treatment in the United States. The domestic courts concluded that it would be lawful for the hospit al to withdraw life-sustaining treatment because it was likely that the child would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit.

In the Convention proceedings, the applicants complained, inter alia , that the hospital had blocked access to potentially life-sustaining treatment in the United States, in breach of Article 2 of the Convention, and that the domestic court decisions amoun ted to an unfair and disproportionate interference in their parental rights (Article 8).

Law

Article 2: As to the applicants’ complaint that the hospital had, through the domestic legal proceedings, blocked access to life-sustaining treatment for the child , the Court recalled that in Hristozov and Others* it had found no violation of Article 2 because the respondent State in that case had put in place a regulatory framework governing access to experimental medication. Such a framework was in place in the Un ited Kingdom and was derived from the relevant European Directives.** Article 2 of the Convention could not be interpreted as requiring access to unauthorised medicinal products for the terminally ill to be regulated in any particular way.

The Court went o n to consider whether there had been a violation of Article 2 on account of the withdrawal of life-sustaining treatment. Of relevance here were (i) the existence in domestic law and practice of a regulatory framework; (ii) the wishes of the patient and tho se close to him and the opinions of other medical personnel; and (iii) the possibility to refer to the courts doubts regarding the best decision in the patient’s interests.***

All three elements were satisfied in the present case:

(i) Regulatory framework – The Court had already found in a previous case ( Glass**** ) that an appropriate regulatory framework, consistent with the standards laid down in the Council of Europe’s Convention on Human Rights and Biomedicine in the area of consent, existed in the United Kingdom and saw no reason to change that conclusion.

(ii) Views of patient, family and medical experts – Although the child could not express his own wishes, the domestic courts had ensured that his wishes were expressed though his guardian, an independent professional appointed expressly by the domestic courts for that purpose. The parents had been fully involved and represented through all the decisions made and significant weight was given to their views. They had also been able to instruct their own medical expert and the domestic courts had engaged in detail with the views of that expert. The opinions of all the medical personnel involved were examined in deta il and opinions were also sought from a specialised overseas team. The Court of Appeal had also heard from the doctor in the United States who was willing to treat the child and who had also been invited to discuss his professional views with the child’s d octors in the United Kingdom.

(iii) Referral to courts – It was evident from the domestic proceedings that there was not only the possibility to approach the courts in the event of doubt but in fact, a duty to do so. The hospital had quite properly applie d to the High Court under the relevant statute and the inherent jurisdiction of that court to obtain a legal decision as to the appropriate way forward.

***

Accordingly, and in view of the margin of appreciation left to the authorities, the complaint under Article 2 was manifestly ill-founded.

Conclusion : inadmissible (manifestly ill-founded).

Article 8: There had been interference with the parents’ rights relating to their family ties with their son. That interference had been in accordance with the law an d pursued the legitimate aims of protecting the “health or morals” and the “rights and freedoms” of a minor.

In examining whether the interference had been necessary in a democratic society, the Court rejected two arguments that had been raised by the pare nts who had argued that (i) it was not appropriate for the question of their son’s treatment to be taken by the courts and (ii) the appropriate test for determining whether the interference with their parental rights was necessary was not whether it was in the child’s “best interests”, but whether there was a risk of “significant harm” to the child. As to the first argument, the Court stated that in the light of its case-law in Glass and Lambert and Others , it was clearly appropriate for the treating hospit al to turn to the courts in the event of conflict. As to the second argument, there was a broad consensus – including in international law – in support of the idea that in all decisions concerning children, their best interests must be paramount. The quest ion was not, however, decisive in the instant case as the domestic courts had in any event concluded on the basis of extensive expert evidence that there was a risk of “significant harm” to the child, who was likely being exposed to continued pain, sufferi ng and distress and would not benefit from the experimental treatment.

The domestic courts had been meticulous and thorough, ensured that all concerned were represented throughout, heard extensive and high-quality expert evidence and accorded weight to all the arguments raised. The domestic decisions were reviewed at three levels of jurisdiction with clear and extensive reasoning giving relevant and sufficient support for the courts’ conclusions at all three levels.

There was accordingly nothing to suggest that the domestic courts’ decisions could amount to an arbitrary or disproportionate interference.

Conclusion : inadmissible (manifestly ill-founded).

The Court also declared inadmissible, as manifestly ill-founded, the applicants’ complaint under Article 5 of the Convention.

* Hristozov and Others v. Bulgaria , 47039/11 and 358/12, 13 November 2012, Information Note 157 .

** Notably the European Clinical Trials Directive ( EC/2001/20 ).

*** Lambert and Others v. France [GC], 46043/14, 5 June 2015, Information Note 186 .

**** Glass v. the United Kingdom , 61827/00 , 9 March 2004, Information Note 62 ; and Glass v. the United Kingdom (dec.), 61827/00, 18 March 2003, Information Note 51 .

© Council of Europ e/European Court of Human Rights This summary by the Registry does not bind the Court.

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