Imagine the following scenario: You are a new parent and your baby — less than a year old — begins exhibiting worrisome symptoms, including cognitive delays and eventually seizures. You take him to the hospital for evaluation, and a series of tests proves inconclusive. Your baby continues to decline to the point that he requires life-sustaining measures, including artificially assisted food, fluids, and ventilation.
Eventually, the doctors tell you that your child is suffering from an unknown neurodegenerative disorder and they cannot do anything for him. He will be permanently disabled. Moreover, he will be forever dependent on life-sustaining measures, unable even to breathe for himself.
The doctors tell you that his brain is so compromised that he likely cannot see, hear, or communicate. He is probably unaware of his surroundings. They describe him as being in a “semivegetative” state. But while, ultimately, his brain degeneration will take his life, he is not dead.
You love your baby and detect a personal presence in spite of his grave disabilities. So you decide to take him from this hospital to seek alternative treatments, or failing that, just to continue to care for the child he is now, for as long as he is with you. But you are told that you may not take custody of your sick child. By operation of law, it is the state, not you, that determines his best interests and what treatment he is owed. And its conclusion (announced in a judicial proceeding) is that, because your child’s disability will render his life so poor and bereft of meaningful benefits, it is in his best interests to die.
Accordingly, the state orders that his life-sustaining measures be withdrawn for the very purpose of ending his life. Your desperate objections are rebuffed as merely the product of irrational emotion. Police are deployed, protests ensue, and the hospital staff switches off his ventilator.
Is this some fictional, dystopian, totalitarian nightmare? Sadly and shamefully, no. It is the reality of the modern-day United Kingdom — a nightmare from which the parents of toddler Alfie Evans cannot awaken.
Little Alfie Evans has recently passed away, but the struggle over his treatment provoked a worldwide conflict over parental rights, how to care properly for the seriously disabled, and the appropriate role of the state in such intimate and vexed matters. What it revealed is that the law of the UK is in desperate need of revision to make room for the profoundly disabled and their loved ones who wish to care for them, despite the judgment of others that such lives of radical dependence and frailty are not worth living.
Alfie was suffering from an apparent neurodegenerative disorder that physicians have thus far been unable to diagnose, associated with severe epilepsy and resulting in devastating cognitive impairment. They were convinced that he would never recover higher cognitive functioning nor be restored from his state of profound dependency and reliance upon life-sustaining measures. However, according to the UK High Court’s published opinion, there was no evidence that he was suffering or in pain. And even though it seemed likely that his condition would eventually take his life, the court noted that the “medical consensus” was that “the high quality intensive care that Alfie is receiving at Alder Hey could ‘sustain him for a long time.'”
The heart of the problem is that, according to the UK courts’ interpretation of the Children Act of 1989, a life of permanent disability and dependency, whether long or short, is not worth living. The UK High Court “root(ed)” its opinion in the ethical guidance of the Royal College of Paediatrics and Child Health, which asserts that “it is no longer in the child’s best interests to continue (living)” in those cases “where the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life.” Because of his disability, Alfie’s very life was deemed no longer beneficial to him. And therefore it was declared illegal to keep him alive.
This decision reflects a profound, indeed lethal intolerance of dependence and disability. But it is even worse than that. Just as in the Charlie Gard case, the courts here effectively terminated the rights of Alfie’s parents, forbidding them to seek transfer to other facilities that wished to care for Alfie. Both Pope Francis and the Italian government pled for Alfie’s life, going as far as to make him an honorary Italian citizen and offering air transport to a pediatric hospital in Rome. But the UK government refused.
What began with a hospital’s deadly policy against a child with apparently permanent disabilities ended with a shocking totalitarian intervention by the state, annihilating his parents’ rights in order to ensure Alfie’s demise.
Contrary to the predictions of some of the medical experts on whom the court relied, Alfie continued to breathe and fight for his life in the absence of artificial ventilation for more than four days until he passed away.
In the wake of this most recent tragic case, let us hope that the UK government changes its laws to give parents the freedom to care for their disabled children and, most importantly, turns away from a perfectionist conception of “best interests” so hostile to imperfection, disability, and dependence that it mandates the death of those who are not suffering nor imminently dying simply because their lives have been judged by able-bodied strangers to be no longer worth living.
O. Carter Snead is a fellow of the Ethics and Public Policy Center and a professor of law, director of the Center for Ethics and Culture, and a concurrent professor of political science at the University of Notre Dame. The views expressed here are solely his.