By now almost everyone has heard of the the Charlie Gard case. The issue at its core is much simpler than any of the accounts that I have read of the plight of this child and his family. Medically the case is straightforward. The child suffers from a rare metabolic defect that has destroyed all higher brain function. He cannot see, hear, breathe, swallow, etc. He appears irreversibly insensate. It seems as certain as one can be that no medical aid can restore him to any semblance of autonomous function. But the heart of this case is not medical; it is an issue of basic freedom.
There has never been a case like this one. The parents of the child want to take him to the United States at no cost to the British taxpayer for an experimental treatment. The hospital caring for the child, Great Ormond Street Hospital, has gone to court to prevent the child from being transferred. They have thus far prevailed. The arguments that the hospital has employed are so twisted and self contradictory that some really high priced lawyers must have been involved.
The hospital argues that Charlie is so badly brain damaged that his disorder is beyond any hope of recovery or medical benefit. They list all the things he can’t do; a list that includes just about anything, including feeling pain. Then they argue that if he were transported to the US and treated there that somehow this insensate child would suffer. And the court, in what can only be termed a state of advanced judicial confusion, concurs and forbids the parents from seeking help elsewhere ordering that he be allowed to die by having life support withdrawn. Both the Pope and the US President, the oddest of couples, agree that this is a horrible infringement on the rights of the parents to determine what is best for their son.
I wrote above, that there is no similar case to this one. The press, which doesn’t seem to understand what’s at stake here, has brought up at least two examples they think is similar to this case. The first is the Terri Schiavo case. But the care of Ms Schiavo involved a dispute among family members as to what was the best way to care for her. There is no family dispute here.
The second is the Texas law which allows life support to be withdrawn from a hopeless case even when the family objects. But that law lets the patient to be sent to another hospital, if that hospital agrees to accept him. There is at least one other hospital willing to accept young Gard, but the doctors “caring” for the child and the British legal system wish to forbid his transfer. What possible reason could there be to prevent a parental couple from getting whatever medical care they could for their child at no expense to the government? Whether said treatment is useless or not is irrelevant. This shameful denial of parental rights deserves scorn beyond words.
It is tempting to place the blame for this scandal at the feet of single payer government run medicine. I’m not sure that doing so would be accurate. What may be the root of this disgraceful episode is that the Brits, Canadians, and all the rest of the so called liberal democracies are not as free as the US. I cannot see such a scenario playing out in the US. Perhaps all the obloquy heaped on the Great Ormond Street Hospital and the British legal system will cause them to relent from an ethically untenable position. A general rule is that parental rights can only be abridged when failure to do so would harm a child.