Belfast Telegraph

Alban Maginness: Why tragic tot Alfie Evans was a victim of a society which is riven by moral doublethink

Parliament should legislate to put parental wishes at the heart of the legal decision-making process, says Alban Maginness

We live in a world of double standards. Last week the courts ruled that an extremely ill young toddler called Alfie Evans was prohibited from flying from England to Italy for treatment, despite his distressed parents wanting him to go there.

Meanwhile, hundreds of British people are legally permitted every year to fly to Switzerland to end their lives in the Dignitas clinic, for what is called "assisted dying". Where, one may ask, is the consistency in all of this? What value do we place on protecting human life in our supposedly sophisticated society?

We witnessed in sadness the pitiful plight of the 23-month-old child Alfie in his struggle for survival. At the heart of all this was a tug-of-war between his parents, Tom Evans and Kate James, and the famous Alder Hey hospital, where the child was being treated for a very rare undiagnosed degenerative neurological condition. In essence, his father and mother wished the child to go home and into their care, so that they could transport him to Italy, where he could receive treatment at the Bambino Gesu hospital in Rome.

The Alder Hey hospital objected to this course of action on medical grounds and the highest courts in the land ruled against Tom and his partner Kate.

Even Pope Francis was involved, publicly expressing his concern for the seriously ill child and requesting that an Italian military air ambulance be available to transport the child to Rome, if the court granted permission.

The Italian government granted little Alfie citizenship, in the hope that he would be given immediate transfer to Italy.

None of this was to happen, as the Appeal Court agreed that Alfie 's ventilator should be switched off and a court order was made legally preventing the child travelling abroad. Surprisingly, after the ventilator was turned off the child was able to breathe on his own. But two days afterwards, the toddler died. It was a sad end to a tragic struggle between two ordinary parents and the might of the judiciary and the state.

Arising out of this particularly upsetting case is the way in which the courts determine these difficult issues. Under current law, the court regards the welfare of the child to be paramount, and that is the standard which the court attempted to apply in this case.

But viewing the case from the outside, ordinary members of the public might be forgiven for feeling that the wishes of the parents were largely disregarded. There did not appear to be sufficient consideration of the parents' right to make decisions for their own flesh and blood.

The impression is that the parents' wishes were marginalised. It would seem in the Evans case, as some months ago in the similar case of Charlie Gard, that the courts defer almost entirely to the opinion of the doctors.

Yet, all that Alfie's parents wanted was modest enough, when you consider it. They wanted (not unreasonably), that this very ill child be transferred from the English hospital to an equally eminent hospital in Rome for treatment. That hospital was fully prepared to receive the child, in order not to cure him, but to identify his undetermined condition and provide continuing palliative care. Was this too much for his parents to ask for? What the Alder Hey hospital said was that he could not be cured and that his death should be allowed to happen without further extraordinary medical measures being used to prolong his life.

There have been some unfortunate and extreme responses to this stance by Alder Hey, with some people describing the hospital as committing euthanasia, or even murder. This is despicable nonsense, which should never have been aired.

The medical staff have also been subject to unfair and vile threats, and staff members rightly felt intimidated. So much so, that the police had to safeguard the hospital building and its entrances.

All this must be rightly condemned, but there are still issues that the hospital must consider and answer in order to give the public a reassurance that they do not prefer to end life in such circumstances, but rather wish to carry on pursuing every reasonable avenue that can protect the life of such a severely ill child.

But there are real questions for the courts as well to answer. The central question for the judiciary is what is the correct balance that they need to exercise in coming to their decisions?

Do the judiciary give enough consideration to the crucial views of the parents in arriving at their decision?

Should Parliament now urgently review this and, if necessary, change the law, to put parental wishes at the heart of the legal decision-making process?

These cases are rare, but given the significant advances in medicine, it is likely that they will become more common in the near future.

Time is therefore of the essence.

Belfast Telegraph

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