The death of Alfie Evans, forced off life support by doctors, bioethicists, and judges — strangers — and denied the right to have his care decisions made by his parents, brings health care to a crossroads.
For years we have been told that end-of-life decisions are the most intimate of all, and that as autonomous persons, we — or if incompetent, our families — must be free to decide when to refuse life support, to which I say, amen.
Some, take the meme even farther, insisting that autonomy is so fundamental, patients ought to be able to direct doctors to provide a lethal prescription or jab if they wish termination to avoid suffering caused by illness, disability, or debilitation.
But, now we are told that when life is wanted, when a patient or family wish to fight for every breath, or parents decide to give their children every chance to make it through a terrible health crisis, no matter how unlikely — well, autonomy has its limits, don’t you know. “Best interests,” and all that.
These cases are becoming more brazen. Some call it “futile care,” or “inappropriate care” — based on the utilitarian values of our technocratic “expert” class, which is taking power onto itself to decide when a life is no longer worth living. They can call it “professional standards,” all they want, but people understand what is really going on.
But here’s the thing: If Alfie had been a royal baby — either of the political or celebrity kind — he’d still be on life support if that was what his parents wanted. He would be in a different hospital with new minds and new imaginations searching for causes and treatments. And it rankles.
Our institutions are in a crisis state of distrust. In health care, this is bred and worsened by each case of coercion by the “experts.” I know. People reach out to me. They email or approach after my speeches. In the stories they tell, I sense that sometimes two lives were lost in the event because people’s sense of rage and loss is so raw they simply cannot move on.
Given the millions of times that patients and families decide to stop fighting illness or injury and allow nature to take its course, it is remarkable that bioethicists and health-care policy honchos feel the need to push the relatively few dissenters out of the lifeboat. It isn’t right. It isn’t just. And it isn’t smart.
Ironically, I believe the doctors at the hospital genuinely thought it was in Alfie’s best interests to stop life support. I might believe that the time had come to let him go too.
But so what and who cares? He was not my boy. And he was not theirs. The parents should have been able to make that call, and to move him to another hospital willing to keep trying.
What if they established a technocracy and nobody obeyed? This was about raw power. If Alfie — Charlie Gard before him, and the victims of futile care in this country — had escaped the diktat, there would soon be others demanding their freedom too.
In the end, that is the reason Alfie was denied his right to the last chance his parents fought so bravely and tenaciously to give him. He was denied his right to have the two people who knew him most intimately, loved him most intensely, and who bore him — his parents, not strangers — make these decisions, particularly since the withdrawing life support and refusing transfer were value judgments and not medically required.