This article originally appeared in Issue 3 (November 2019).
In a tragic case concerning five year-old Tafida Raqeeb, MacDonald J considered whether withdrawal of life sustaining treatment was in her best interests. He ultimately concluded that treatment should not be withdrawn.
The case raised two interesting issues: First, the relationship between the right to freedom of movement (Art 56 TFEU) and best interest determinations in circumstances where medical services are offered in an EU Member State. Second, how a disabled child’s best interests should be determined where they retain a minimal level of awareness, feeling no pain but equally experiencing very little, if anything, of a positive nature.
Tafida Raqeeb (‘TR’) was born on 10 June 2014. On 9 February 2019, aged 4, she collapsed after complaining of a headache. Examination revealed a large blood clot on TR’s brain, caused by a ruptured arteriovenous malformation. She had suffered extensive and irreversible brain damage. Her condition was stabilised, however she was dependent on artificial ventilation to remain alive. If ventilation continued, she could survive for 10 to 20 years. There was a possibility she might eventually be cared for at home. There was no chance of any significant improvement in her mental functioning. If TR was aware at all, she was minimally so. It was likely she did not feel pain.
It was the view of the medical team treating TR that it was not in her best interests to continue life sustaining treatment. Her parents disagreed, stating that withdrawal of treatment was against their Muslim beliefs. Doctors at Gaslini Hospital in Italy agreed to receive TR for ongoing care. TR could be transferred to Italy without risk and the proposed treatment in Italy was not experimental, but a continuation of what she was receiving in England. The material difference in opinion between the English and Italian doctors was simply whether sustaining TR’s life was in her best interests.
Barts NHS Foundation Trust (‘the Trust’) would not agree to transfer TR to Gaslini Hospital. They applied to the High Court for a declaration that it was in TR’s best interests for life-sustaining treatment to be withdrawn. Judicial review proceedings were brought by TR, challenging the Trust’s decision to refuse her transfer to Italy.
Freedom of movement and best interests
The decision to refuse to transfer TR to Italy was challenged on a number of grounds. The most significant concerned TR’s right to freedom of movement under Art 56. It was submitted that “where a child has a right under Art 56 to receive healthcare services in another Member State as a function of her EU rights, public authorities in this jurisdiction may not restrict the right to receive such services unless there [is] an imperative public policy reason for the purposes of Art 52”. The Trust admitted that it had not considered TR’s freedom of movement rights at all in reaching their decision. Accordingly, it was submitted, that decision was unlawful.
It was further submitted that the interference with TR’s right to freedom of movement could not be justified in accordance with EU law. That is, the Trust could not lawfully block TR’s transfer to Italy. The clever legal twist in this argument came at its end: if the court accepted these submissions, “the court would be functus as to Tafida’s wider best interests”. That is, her best interests would then be a matter for the Italian doctors alongside her
MacDonald J agreed that the Trust should have considered whether their decision interfered with TR’s EU rights under Art 56 and, if it did so interfere, whether that was justified on grounds of public policy. The Trust’s failure to do so rendered the decision unlawful. Further, the Trust’s decision to refuse transfer was a plain interference with TR’s Art 56 rights. Nevertheless, MacDonald J held at  that had the Trust considered TR’s rights, it would have reached the same decision, because the interference with her rights could be justified.
Justice MacDonald noted that Art 8 of Council Regulation (EC) 2201/2003 confers jurisdiction for the use of national procedures to resolve a dispute as to a child’s best interests. He went on to confirm at - that having recourse to the national procedure for determining a child’s best interests and refusing transfer of that child pending a determination of those proceedings would be a justifiable derogation of the child’s right to freedom of movement.
The important corollary of this conclusion was that the best interest determination in the High Court would take precedence over any claim to freedom of movement. As MacDonald J held at : “Where receipt of treatment is held to be in the child’s best interest then the relevant EU right is implemented. Where it is not held to be in the child’s best interest, then EU law would not require… the implementation of an EU right in a manner that is antithetic to the child’s best interests”. Accordingly, the clever legal submission that the High Court was ousted from considering TR’s best interests did not succeed.
In the circumstances, MacDonald J refused to grant any judicial review remedy at all, despite finding the Trust’s decision to refuse transfer of TR to be unlawful.
A practical point for NHS Trusts
Accordingly, where NHS Trusts are faced with a request by parents of an EU citizen child to transfer that child for medical treatment in another Member State, in deciding whether or not to agree to that transfer the Trust will need to consider the EU rights of the child, including freedom of movement. However, where an NHS Trust, having properly considered the child’s EU rights, decides that a transfer would not be in the best interests of the child and that an application to the High Court is required to determine the resulting dispute, it is highly likely that that decision will constitute a justified derogation from the EU rights engaged.
Best interests and minimal awareness
In determining TR’s best interests, MacDonald J faced a circumstance where, in a purely medical sense, there was no benefit to TR in continuing to maintain her life. Nor, however, was there any burden, as TR was unlikely to experience pain or suffering. In his own words at , cases of this sort “place the objective best interests test under some stress. Absent the fact of pain or the awareness of suffering, the answer… must be looked for in subjective or highly value laden ethical moral or religious factors extrinsic to the child…” While every case will turn heavily on its facts, there are a few points of interest in how MacDonald J approached the matter.
MacDonald J at  set out a concept of benefit that went beyond mere medical benefit. Drawing on the judgment of Lord Hoffman in Airedale NHS Trust v Bland  ACR 789, he argued that it was wrong to conclude “we have no interests except in those things of which we have conscious experience”. Such an approach “does not accord with many people’s intuitive feelings about their lives, and particularly those people who have a strong religious faith.”
As to the dignity of sustaining TR’s life, the Trust submitted that, even if TR felt no pain, further invasive treatment over an extensive period would impose an unacceptable burden on her human dignity. In response, MacDonald J held at : “The term ‘human dignity’ does not lend itself to precise definition and there is no universal agreement as to its meaning. The concept of human dignity must, accordingly, contain a significant element of subjectivity and thus be influenced by, for example, the religious or cultural context in which the question is being considered.”
MacDonald J ultimately concluded there was a benefit and an innate dignity in TR being cared for by a loving and dedicated family at home in a manner consistent with the religious code and community values within which she had been raised. Accordingly, MacDonald J dismissed the application for a declaration that withdrawal of life-sustaining treatment was in TR’s best interests.