THE death of a child must be the hardest of bereavements, going, as it does, against the natural order of things. A howl of despair from the parents is probably the only apt response. Yet it is hard not to feel that the events that have surrounded the final days of Charlie Gard have made his parents’ anguish even worse (News, Leader, 7 July).
The medical disagreements, protracted legal debate, and vehement protests created a focal point for the displaced anger of the child’s tormented parents. But their heartbreak has surely been amplified by the emotional charge of the ethical debate, which has muddled parental rights and medical judgements.
Doctors did not simply disagree; aspersions were cast upon the bona fides of Professor Michio Hirano, the medic from the United States who was offering untested treatment, in which, it turned out, he may have had a financial interest. The parents insisted that medical and legal time-wasting had stolen their child’s life away. Medics said that they had wickedly been given false hope. The outraged reductive responses on social media created a mood in which hospital staff received death threats, and then the parents were hurtfully abused by the doctors’ defenders. Pro-life protesters from the US arrived to stand outside the court and chant emotive slogans.
When doctors insist that treatment is not just futile but probably painful, and yet parents are determined to cling to even the smallest hope, it is inevitable that the courts will have to decide. Complaints, most particularly from the US, that the parents’ rights were being usurped by judges, together with calls for the law to respect the “natural right of parents”, misunderstood that, in the UK, children have rights independent of their parents. Were that not so, Jehovah’s Witnesses would be allowed to deny their offspring life-saving blood transfusions.
So how should judgements be reached here? St John Paul II offers some assistance in his encyclical Evangelium Vitae, which makes the distinction between ordinary and extraordinary means of prolonging life. While robust in its opposition to euthanasia, it also rejects any medical intervention that is “burdensome” or “disproportionate . . . to the prospects for improvement”. Avoiding such treatments, he suggests, simply “expresses acceptance of the human condition in the face of death”.
Close study of that document suggests that some criticism of the doctors and lawyers could validly be made. Behind their euphemisms about allowing Charlie to die “peacefully” and “with dignity”, they repeatedly alluded to the baby’s mental disability and brain damage. That spoke revealingly of our questionable social tendency to diminish those with disabilities — a propensity that Evangelium Vitae condemns as “shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of ‘normality’ and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well”.
Yet, overall, St John Paul’s guidance points towards the same conclusion that Charlie’s parents eventually reluctantly reached: that, when the prospects for improvement had vanished for their tiny baby, they needed “to be able to prepare in a fully conscious way” for their son’s “definitive meeting with God”.
There is anguish enough in that for any parent. How sad that society has conspired to augment their agony in this terrible way.