Medical treatment decisions: the best interests of young children
Tafida Raqeeb (by her Litigation Friend XX) v Barts Health NHS Trust and Shalina Begum and Muhhamed Raqeeb as interested parties [03.10.19]
Barts Health NHS Trust v (1) Shalina Begum (2) Muhhamed Raqeeb (3) Tafida Raqeeb (by her Children’s Guardian) (4) XX [03.10.19]
The High Court accepted it was medically futile to continue active medical treatment for Tafida Raqeeb and that it was not in her ‘medical’ best interests to continue life-sustaining treatment. However, determining that the assessment of best interests was not limited to medical considerations, but included taking into account likely beliefs, wishes and feelings, the Court held that it was in Tafida’s overall best interests to continue living on ventilated life support. Kennedys were instructed to act on behalf of Barts Health NHS Trust (the Trust).
On 9 February 2019, when aged four, Tafida tragically suffered a catastrophic rupture of a previously undetected congenital arteriovenous malformation, which caused widespread brain damage, from which there is no recovery. Tafida now receives life sustaining mechanical ventilation and remains in a sub-minimally conscious state.
Tafida’s treating clinicians at the Royal London Hospital considered it in her medical best interests for life sustaining treatment to be withdrawn, as there are no prospects of recovery and no treatment to ameliorate her situation. Tafida’s parents are devout Muslims and did not consent to this proposal. Instead, they requested Tafida be transferred to the Gaslini Hospital in Italy, where clinicians had agreed to undertake a tracheotomy and continue ventilated life-sustaining treatment indefinitely. The Trust declined to agree to the transfer pending the outcome of a best interests decision to be made by a Family Division judge.
Tafida’s parents commenced a Judicial Review Application in the Administrative Court seeking to quash this decision. The Trust made an Application to the Family Court under s.8 of the Children Act 1989 and the inherent jurisdiction of the High Court, seeking a declaration as to what is in her best interests and guidance as to whether it would be lawful to withdraw life sustaining treatment and commence palliative care. Both proceedings were heard sequentially before His Honour Judge Macdonald in the High Court, who gave a combined judgment.
Position of the parties
Tafida’s parents and her Aunt, acting as her litigation friend in the judicial review proceedings, alleged the Trust had erred in reaching a decision to refuse her transfer to Italy. Their position being, that (among other matters), the Trust had failed to consider Tafida’s European Union (EU) right to free movement under Article 21 and to receive services in any EU country under Article 56 of the Treaty for the Functioning of the European Union (TFEU).
The Trust’s position was that this decision was not amenable to judicial review. Further and, in any event, the correct procedure for such a decision to be reached was the Trust’s application for a best interests determination; the ultimate decision as to Tafida’s future lying with the Court, under the protection of the gold standard best interests test, not available in judicial review proceedings.
In respect of the best interests proceedings, Tafida’s parents provided evidence that she has been raised a practicing Muslim and had both a respect for those with disabilities and an understanding of the sanctity of life. As such, their position was that Tafida would have wanted to remain alive.
Tafida was represented by an independent guardian in these proceedings, (through CAFCASS) who conducted an investigation and concluded it was in her best interests for life-sustaining treatment to be withdrawn.
The Trust’s position was that its application was made to enable an objective, independent decision maker to consider Tafida’s immensely difficult situation from her perspective and with all of the relevant information on her wider best interests.
Expert medical opinion obtained on behalf of the parties (including Italian doctors at the Gaslini hospital) was unanimous as to her poor prognosis, with differing views as to the ethical considerations with continuing life-sustaining treatment. All agreed there was no prospect of recovery and that she would be ventilator dependant for the rest of her life (10-20 years). All agreed she would develop severe movement disorder, spasticity, dystonia and severe cognitive impairment. She would develop drug resistant epilepsy, scoliosis, hip dislocation, pneumonia, bone disease, renal stones, pressure sores and hypertension. She was though, as much as could be discerned, pain free and unaware of her situation.
The Judge held that the Trust’s decision to refuse Tafida’s transfer to Italy was amenable to judicial review. Furthermore, he held the decision was unlawful, as the Trust failed to consider Tafida’s directly effective EU rights, including Article 56 of the TFEU, when reaching their decision. However, he declined to grant the relief sought to quash the decision, on the basis he considered, had the Trust adopted the correct approach, they would have arrived at the same point in any event (namely, making an application to court under s.8 of the Children Act 1989 and the inherent jurisdiction of the High Court for a best interest determination).
Furthermore, the Judge held it is in Tafida’s overall best interests to continue life-sustaining treatment, either in the UK or Italy. Whilst acknowledging his limitations in seeking to place himself in the shoes of a five year old, he considered the Court “must do the best it can on the evidence available”. Despite a medical consensus of what can ultimately be achieved, he considered “the benefits of life sustaining treatment may extend beyond the merely medical”.
In doing so, the Judge gave weight to evidence of the following:
• Tafida not being in pain
• the burden of the treatment being low
• the fact there was a fully (privately) funded transfer and care plan in place
• a number of children in similar circumstances within the jurisdiction receiving such treatment
• the treatment proposed being consistent with the religious and cultural tenets by which Tafida has been raised and having regard to the sanctity of her life.
The Judge concluded:
The gold standard against which cases of this nature are measured and determined remains that of the child’s best interests and as the march of medical innovation continues to bring cases of this nature before the Courts, [Judges] will be required to apply this standard to the best of their ability. That is what I have endeavoured to do in this very sad case.
We consider this decision will impact anyone wanting to take a child or incapacitated adult out of the country for medical treatment. Trusts must heed this decision and take care to ensure if such requests are made that patients’ EU rights, in particular those under Articles 21 and 56 of the TFEU, are considered and that such considerations are documented. Where a dispute remains as to a patient’s best interests that has not been resolved through mediation or other means (and where the High Court has the jurisdiction to intervene) an urgent application must be made to resolve that dispute before those EU rights can be affected.
Best interest decisions will still rely on medical evidence, considered in light of the applicable Royal College guidelines. However, this judgment highlights the decision making process is not merely confined to medical matters and the wishes and feelings of the patient. The matters for consideration are far wider and the patient’s family and particularly those with parental responsibility, have a vital role in guiding that evidence.
This case reopened the debate about parental responsibility and the extent to which it should prevail in the context of medical treatment decisions. In care proceedings, the courts will generally only intervene where the child has come to significant harm or where something would pose a serious risk of significant harm being suffered in the future. In medical treatment decision matters though, under the Children Act and inherent jurisdiction, the threshold is lower and focuses on the best interests of the child. As in the cases concerning Charlie Gard and Alfie Evans, the Court has reiterated that best interests remains the appropriate threshold.
Trusts should not shy away from making applications to court, where necessary to protect the best interests of their patients. It is not the responsibility of Trusts to make best interests decisions with regard to the religious beliefs of the patient or their family. The position remains that if a Trust is faced with a medical consensus in favour of the withdrawal of life-sustaining treatment, but those with parental responsibility consider the sanctity of life should prevail despite that, mediation should be explored. Should this not resolve matters, an application to court must be made.