In a case reminiscent of those of Charlie Gard and Alfie Evans, the family of a gravely ill five-year-old child has been given permission to take her out of the country for treatment.
In February, Tafida Raqeeb had a blood vessel rupture in her brain, and has been in a coma since. Doctors at the Royal London Hospital had claimed further treatment is futile and want to remove the child from life support.
Her parents - Shelina Begum and Mohammed Raqeeb - want to take her to Italy for further treatment and petitioned the High Court to allow their daughter to travel abroad.
The Gaslini Children’s Hospital in Genoa has offered to take Tafida as a patient and said she wouldn’t be in danger of having her life support removed.
The High Court judge on Thursday agreed, saying there was nothing to stop her being transferred to Italy for further treatment.
Bishop John Sherrington, the lead bishop for life issues for the Catholic Bishops’ Conference of England and Wales, said he welcomed the ruling.
“The heart-breaking illness of Tafida Raqeeb and the distress which the illness of a child causes parents touches the hearts of many people,” the bishop said.
“I trust that all the medical professionals will cooperate to continue to give her the best possible care and appropriate treatment. Such international cooperation is essential good practice in the care of tragically difficult lives. I will keep these professionals in my prayers,” Sherrington continued.
The court’s decision is in stark contrast to what was decided in the case of Gard in 2017 and Evans in 2018: In both cases, the British courts ruled against parents trying to take their child abroad for further treatment against the judgement of hospital staff. Both children died without receiving the treatment requested by their families.
“The parents of Tafida Raqeeb succeeded where those of Charlie Gard and Alfie Evans did not because the judge was satisfied that transporting her would not present any harm, and because there is precedent within England for other children in a similar situation to be kept alive on long-term ventilation,” said Michael Wee, the Education and Research Officer at the Anscombe Bioethics Centre.
“The judge thought it was unlikely that she currently feels pain, and was aware that the natural history and prognosis of children with disorders of consciousness is less well-defined than in adults, placing some weight on the possibility that she might eventually be weaned off ventilation, as suggested by Italian doctors,” he explained to Crux.
The Oxford-based Anscombe Bioethics Centre is the leading Catholic institution studying medical ethical issues.
“Despite the severity of Tafida’s condition, the judge in this case has displayed an admirable sensitivity to the different kinds of benefit still available to Tafida in the case of continued life - that such a continuation would be consistent with the religious and cultural tenets by which she was raised, that she still has a minimal level of awareness and would therefore stand to gain from being cared for at home, which remains a possibility,” Wee said.
However, he said the case shouldn’t be seen as a turning point in jurisprudence when parents and doctors clash over a child’s treatment of severe conditions, saying Catholics should be “cautious about celebrating this judgement.”
“The fundamental legal principles by which the Gard and Evans cases were decided have not really changed. The law still makes such decisions on the basis of a supposedly objective ‘best interests’ test, and does not give sufficient weight to parental authority,” Wee said.
“Medical guidance from the Royal College of Paediatrics and Child Health, which says that life-sustaining treatment may be withdrawn when a child cannot ‘enjoy the benefits that continued life brings’ and thereby invites a judgement on the worthwhileness of life with disability, is still given weight. It is just that in this particular case, there was sufficient evidence to suggest that there was indeed continued benefit to be enjoyed by the child.”
The clash between medical professionals’ determination “best interests” and the wishes of the family made the news earlier this year, when doctors tried to force a mentally disabled Catholic woman to have an abortion against her and her family’s will - the court in that case also sided with the family.
However, there could be a change on the horizon: New legislation, known as Charlie’s Law, will soon be debated in the UK Parliament.
The proposal would offer mediation between medical staff and families to resolve disputes early in a child’s treatment, offer access to clinical ethics committees throughout specialist hospitals, and give parents access to medical information upon request so they can quickly seek a second medical opinion.
Most importantly, it would change the legal principal in resolving disputes between doctors and parents from “best interest” - which tends to tip the scales in the favor of the medical establishment - to a “significant harm” test.
This means if another reputable doctor or hospital is willing to provide treatment which would not cause significant harm to the child, the parents should not be prevented from pursing this option.
If the law is passed, the fate of the next Charlie Gard, Alfie Evans, or Tafida Raqeeb won’t ever have to be put before a court in the first place.