This is emphatically not an argument for parents to impose quacks on seriously ill children. But the NHS has an institutional antipathy to experimental forms of cancer treatment, even in cases where it knows its own methods hold no prospect of a lasting cure. I can’t help thinking a system in which patients and their parents are not themselves paying (except compulsorily as taxpayers) encourages the attitude that they should keep quiet and be grateful for what they get.
Still, the vituperation directed at the staff of Alder Hey is unconscionable. They looked after Alfie to the very best of their ability, and must also have felt distress as his condition — the result of an inexplicable degenerative disorder that attacked the brain of an apparently healthy newborn — worsened. But for him to have ended up as, in effect, a prisoner until death of the state that had earlier removed his ventilation against his parents’ wishes is no advertisement for the English medico-legal system. It’s one thing to give up the medical fight for the child’s life; quite another to say to the parents, “But, all the same, you can’t take him away from us, either back home to die or to a foreign hospital prepared to treat him at its own expense.”
Even if such treatments are pointless — our courts had decided there was no further point in the existence of Alfie Evans — it offends against our entire idea of family to treat the feelings and wishes of loving parents as irrelevant. This love is not just the indispensable basis of a good society. Maternal love is the most powerful force in the known universe. It demands more respect than this.
That truth is about to be put before the courts in another case, in which my wife is involved. With two other mothers whose adult children, like our younger daughter, have what nowadays is called “learning difficulties”, she is bringing a test case before the Court of Protection. As the law stands, the parents of such adults, whether in residential care or not, have no right to a decisive role in how their children are treated. The carers would be obliged to give the parents such a right if the mother or father were appointed by the courts to be their adult child’s welfare deputy. But the current code stipulates that this can be agreed by courts only “in the most difficult cases”.
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