One cannot imagine a more wrenching moral dilemma than the case of little Charlie Gard. He is a beautiful 11-month-old boy with an incurable genetic disease. It depletes his cells’ energy-producing structures (the mitochondria), thereby progressively ravaging his organs. He cannot hear, he cannot see, he can barely open his eyes. He cannot swallow, he cannot move, he cannot breathe on his own. He suffers from severe epilepsy, and his brain is seriously damaged. Doctors aren’t even sure whether he can feel pain.
For months he’s been at the Great Ormond Street Hospital in London. His doctors have recommended removing him from life support.
His parents are deeply opposed. They have repeatedly petitioned the courts to allow them to take Charlie for experimental treatment in the United States.
The courts have denied the parents’ petition. They concluded that the proposed treatment has no chance of saving the child and would do nothing but inflict upon him further suffering. They did, however, allow the American specialist to come to London to examine Charlie. He is giving his findings to the court. A final ruling is expected July 25.
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The Telegraph of London reports that Charlie’s doctors remain unconvinced by the American researcher. Indeed, the weight of the evidence appears to support the doctors and the courts. Charlie’s genetic variant is different and far more devastating than the ones in which nucleoside bypass therapy has shown some improvement. There aren’t even animal models for treating Charlie’s condition. It’s extremely unlikely that treatment can even reach Charlie’s brain cells, let alone reverse the existing damage.
What to do? There is only one real question. What’s best for Charlie? But because he can’t speak for himself, we resort to a second question: Who is to speak for him?
The most heartrending situation occurs when these two questions yield opposing answers. Charlie’s is such a case.
Let me explain.
In my view, two truths must guide any decision: (1) The parents must be sovereign, but (2) the parents are sometimes wrong.
I believe that in this case the parents are wrong, and the doctors and judges are right. Charlie’s suffering is literally unimaginable, and we are simply prolonging it. This is a life of no light, no sound, no motion, only moments of physical suffering (seizures? intubation?) to punctuate the darkness. His doctors understandably believe that allowing a natural death is the most merciful thing they can do for Charlie.
As for miracle cures, I share the court’s skepticism. They always arise in such cases, and invariably prove to be cruel deceptions.
And yet. Despite all these considerations, I would nevertheless let the parents take their boy where they wish.
The sovereignty of loved ones must be the overriding principle that guides all such decisions. We have no other way. The irreducible truth is that these conundrums have no definitive answer. We thus necessarily fall back on family, or to put it more sentimentally, on love.
What is best for the child? The best guide is a loving parent. A parent’s motive is the most pure.
This rule is not invariable, of course. Which is why the state seizes control when parents are demonstrably injurious, even if unintentionally so, as in the case of those who, for some religious imperative, would deny their child treatment for a curable disease.
But there’s a reason why, despite these exceptions, all societies grant parents sovereignty over their children until they reach maturity. Parents are simply more likely than anyone else to act in the best interest of the child.
Not always, of course. Loved ones don’t always act for the purest of motives. Heirs, for example, may not the best guide as to when to pull the plug on an elderly relative with a modest fortune.
But then again, states can have ulterior motives, too. In countries where taxpayers bear the burden of expensive treatments, the state has an inherent incentive (of which Britain’s National Health Service has produced notorious cases) to deny treatment for reasons of economy rather than mercy.
Nonetheless, as a general rule, we trust in the impartiality of the courts – and the loving imperative of the parent.
And if they clash? What then? If it were me, I would detach the tubes and cradle the child until death. But it’s not me. It’s not the NHS. And it’s not the European Court of Human Rights.
It’s a father and a mother and their desperate love for a child. They must prevail. Let them go.
The Washington Post