On Charlie Gard

I do not often use profanity, but some situations call for it. This is fucking wrong:

Chris Gard and Connie Yates lost their final legal bid to take their son to the US for treatment.

Specialists at Great Ormond Street Hospital believe Charlie has no chance of survival.

The court agreed, concluding that further treatment would “continue to cause Charlie significant harm”.

Charlie is thought to be one of 16 children in the world to have mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.

His parents had previously seen a Supreme Court challenge to continue Charlie’s life support fail.

It’s one thing to argue that declining to offer treatments with an extremely low probability of success is permissible. It is another thing entirely to forbid such treatments as a matter of law. Charlie’s parents raised a large sum of money to pay for an experimental treatment for his condition in the U.S., but they have been legally forbidden to seek this treatment. Thus, Charlie will die. Perhaps he would have died anyway. But I guess we’ll never know, now.

Perhaps what is most chilling about Charlie’s situation is the rationale of the Court that effectively sentenced him to death. Justice Francis of the High Court writes, “The duty with which I am now charged is to decide, according to well laid down legal principles, what is in Charlie’s best interests.” According to Francis, it is in Charlie’s interest to die with dignity rather than to pursue a moonshot treatment, one that is unlikely to save his life and likely to cause him some measure of suffering. In itself, this claim, while certainly debatable, is at least reasonable. But this was not just a person arguing about medical ethics. Justice Francis’s opinion had legal force.

It is with the heaviest of hearts but with complete conviction for Charlie’s best
interests that I find that it is in Charlie’s best interests that I accede to these
applications and rule that Great Ormond Street Hospital may lawfully
withdraw all treatment, save for palliative care, to permit Charlie to die with
dignity.

At least Justice Francis is sure of himself.

There are two sides to the horror of the reasoning in the opinion. First, Francis’s opinion implies that a form of utilitarianism is the law of the UK. In Charlie’s case, the likelihood of continued suffering is so high, and the likelihood of recovery so low, that the expected utility of attempting further treatment is less than zero. Ergo, it’s better for Charlie to die. Were Charlie a legally competent adult, Francis could make the exact same argument and it would be equally valid. Would he not then defer to Charlie’s own opinion? Perhaps he would, but the reasoning in this opinion would compel him to overrule Charlie and permit the hospital to withdraw life support whenever it pleases. Is this really what we want?

The second disturbing thing about the opinion is its casual (and unequivocally wrong) assumption that the state is competent to decide objectively what is in a person’s interest. And if this assumption applies in this particular situation, there is no reason it shouldn’t apply in all of them. If the state can decide that it is better for you to die than to live, why shouldn’t it decide everything else for you? After all, most decisions we make are far less weighty than the choice between life and death. The stakes cannot possibly get higher than they were for Charlie and his parents.

The fact that this opinion was ever written is an abomination, made even more abominable by the fact that two appeals have resulted in no changes. Even if you agree with the utilitarian reasoning that Francis employs, you should be horrified by the monstrous power assumed to belong to the state by his opinion, the power to decide for you what is good for you even in matters of life and death. This is totalitarianism, pure and simple.

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