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Best interests in the absence of suffering

Tafida Raqeeb was a ‘happy, joyful’ five year old when on a February morning in 2019, she complained of a headache. Shortly after, she stopped breathing. Intracranial surgery revealed haemorrhage from a ruptured arteriovenous malformation. Following maintenance on intensive care and treatment of hydrocephalus, Tafida was clinically stable, dependent on artificial ventilation. She had suffered catastrophic damage to her brain. Her parents, Bangladeshi and committed Muslims raising their daughter in the Islamic tradition, wished to take her to the Gaslini Hospital in Italy.

In the absence of the criteria to fulfil a diagnosis of brain stem death, active withdrawal of treatment is not permitted in Italy. The Gaslini doctors had been provided with a full set of clinical notes and imaging, and a neurosurgeon, neurologist and intensivist reviewed her case. A subsequent video conference with the UK hospital that had treated Tafida made it clear that the Gaslini doctors thought it highly unlikely that they could provide any treatment leading to an improvement in her condition.

However, they offered palliative care indefinitely, including a tracheostomy and gastrostomy, although envisaged that Tafida might eventually go home on long term ventilation. The UK hospital made it clear that they did not agree to this transfer, believing it was contrary to Tafida’s best interests. A UK paediatric intensivist instructed on Tafida’s behalf concluded that the detailed transfer plan proposed by the Gaslini clinicians was appropriate and would be ‘...extremely unlikely to have any medical or welfare impact’ on her. On the other hand, a consensus of expert evidence accepted that a long list of serious complications derived from Tafida’s long term care were inevitable.

Neither the expert instructed on Tafida’s behalf, nor the Children’s Guardian appointed to represent her, considered that prolonged sustaining treatment was in her best interests, largely because she could not derive benefit from continued life, although the latter accepted that in such a difficult case the court might reach a different conclusion. 

The court reviewed a fatwa from the Muslim Council of Europe, and written representation from the Bangladeshi High Commissioner. Taking the fatwa (a written decision on a point of Islamic law given by a recognised authority in the field) and the High Commissioner’s representations together, the court noted that any Bangladeshi national who consented to or participated in withdrawal of treatment from Tafida would be guilty of a criminal offence under Bangladesh law, and be liable to prosecution in that jurisdiction.

Having heard evidence from the hospital, Tafida's parents, and Italian doctors, the judge found that Tafida has very severe generalised cerebral dysfunction. There is a consensus of medical opinion that it is not possible to exclude in Tafida some level of conscious awareness. But she shows no facial grimace to deep pain, does not cough or gag during endotracheal tube suction and has no withdrawal or heart rate response to painful stimuli. It is therefore likely that Tafida does not perceive pain.

The court noted an unchallenged report by the expert instructed for Tafida asserting that it was not uncommon for home-ventilated children to be admitted to a tertiary PICU during acute deterioration. And that ‘…in the majority of cases these children will recover to their baseline status and be discharged…without the issue of withdrawal of life-sustaining therapy being addressed.'

As is usual in these cases, the judge employed the ‘welfare checklist’ as an aide memoire to identify relevant factors that needed to be balanced against each other before he could reach a conclusion on where Tafida’s best interests lay. Considering her wishes, feelings, emotional needs, and characteristics relevant to her background that he derived from this enquiry, the religious context of her family life was plain to see. Using this approach, he found himself balancing evidence of Tafida’s formative appreciation that life is precious and a wish to follow her parents’ religious practice against little or no evidence that she would have to endure pain or suffering.

Noting that there was a prospect that Tafida could ultimately be cared for by her family at home in the same manner as other children in a similar position in the UK, the judge concluded that he was ‘…satisfied that if Tafida was asked, she would not reject out of hand a situation in which she continued to live, albeit in a moribund and at best minimally conscious state, without pain and in the loving care of her dedicated family, consistent with her formative appreciation that life is precious, a wish to follow a parent’s religious practice and a non-judgemental attitude to disability.'

It is highly unusual to encounter a patient who is found by a court to be incapable of suffering. This case is an example of when few or no factors elicited by the welfare checklist can be placed in the balance pan as a counterweight to the parents’ wish for their child’s life and faith to continue, however unlikely recovery might be.

 

Robert Wheeler
Department of clinical law, November 2019