When parents’ voice is supreme
Logic, common sense and the law are all united against the parents of Alfie Evans. The British boy is terminally ill. His brain is disintegrating to the point where almost nothing but reflexes remain. Very little is understood about the extremely rare mitochondrial disease that has destroyed his brain tissue, but it is irreversible. There can be no recovery, no new life, no magic cure.
Alder Hey hospital, in Liverpool, which has cared for Alfie with immense dedication for the last 16 months of his 23 months on Earth, has come to the proper decision that his condition has so deteriorated that it is no longer in his best interests to continue with intrusive and ultimately pointless care.
They want his parents to accept that the priority now is that Alfie should be allowed a peaceful, natural death. The Evanses instead are fighting to take Alfie to a hospital abroad. Every court to which the parents have appealed, from the High Court to the European Court of Human Rights, has backed the British doctors’ judgments.
I am instinctively with the hospital on this and against the hopeless, painful prolongation of life, and the allocation of stretched health resources beyond the point where they help the patient. But this is not my baby, or yours. Where I break with the hospital and the courts is over the right of Alfie’s parents to take their child elsewhere for private care if that is what their ferocious love and protectiveness drives them to do.
I didn’t take this view when the Alfie case first crossed my consciousness. I was repulsed by the ugly, raucous demonstrations of ‘‘Alfie’s Army’’ outside Alder Hey, and the gleeful mob mentality which reasoned that abusing dedicated hospital staff, scaring the parents of other desperately ill child patients, beeping car horns, attacking the entrance and shouting ‘‘burn it down’’ outside its windows were legitimate ways to express concern. That’s not empathy; that’s aggression hunting for an excuse for a fight.
It is also horribly apparent that a society which can be so voluble in the cause of a disabled baby – 380,000 people have signed up to the Alfie’s Army Facebook page – is pretty indifferent to the frustrating reality of living as a disabled child or adult. Britain’s National Children’s Bureau estimates that the number of disabled children rose by almost 50 per cent between 2004 and 2014, as more survived cerebral palsy, cystic fibrosis and premature birth. Yet they have found it increasingly hard to get the physical, psychological and educational support they need, as local government budgets have been cut and the thresholds for assistance raised.
Disabled adults have much worse outcomes than able-bodied ones. Only half are in work compared to 80 per cent of their peers. A third say they have been treated with hostility because of their disability. The government’s own strategy for disability says disabled people are twice as likely to leave work and three times as likely to struggle to get it.
Yet beyond the hypocrisy and the disgraceful campaigning, there are agonised parents who want their son to have every chance at life. The courts’ decisions have all been about the best interests of the child, which is the basis of law in these matters. That is a proper starting point. It prevents dangerous or deluded parents from wilfully harming their children, perhaps by refusing them critical medical care, as Jehovah’s Witnesses sometimes do, or by pursuing pointless and damaging treatment in the cause of false hope.
It seems to me that in the endless grey area which is life-threatening or terminal illness there ought sometimes to be room for the parents’ interests too. Not when they are wilfully careless, but when judgments are finely balanced and nobody can be absolutely certain what the consequences of further intervention would be. In Alfie’s case it is not a question of life versus death – death is inevitable – but about what degree of pain and interference is worthwhile.
These parents, after all, are the people who will live with the agonising aftermath of their son’s death for the rest of their lives. The depth of their feeling for him, their urge to nurture him, their sense of agency and pride will be forever influenced by whether they are allowed a decisive voice now.
Doctors are not omniscient in their assessments of difficult cases. Sometimes parents are right to rebel. Let’s remember, for instance, the case of Ashya King, the five-year-old whose parents removed him from Southampton Hospital when doctors insisted that innovative cancer treatment abroad would be a cruel waste of time. Three years later he is flourishing. Alfie cannot flourish but perhaps doctors are wrong to declare that the time for intervention is over. In Germany, for instance, it is normal for parents to be given every assistance to nurse their dying children at home until they alone decide that the time has come to stop.
Alfie’s parents are not asking the National Health Service to do or spend more. They just want permission to take their son abroad. Since December, when Alder Hey first decided to end Alfie’s ventilator support, they have been fighting legal battles to transfer him to an Italian hospital which is prepared to keep him alive a little longer. The treatment on offer there could be more intrusive still: a tracheotomy – a hole cut in his windpipe – to help him breathe.
But if Alfie is scarcely capable of consciousness and if it would give his parents the reassurance of having done everything they could, it seems to me wrong to deny them that fierce and elemental need to fight for the child they brought into the world. – The Times
It is also horribly apparent that a society which can be so voluble in the cause of a disabled baby is pretty indifferent to the frustrating reality of living as a disabled child or adult.