Any day now, they’ll kill Charlie Gard.
Charlie Gard, born last August, suffers from an inherited disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, generally referred to as “MDDS.” The disease is extraordinarily rare: At present, there are only 16 known cases worldwide. Most patients who suffer from it die in early infancy. Charlie is unable to breathe unaided, suffers from seizures, and has severe brain damage.
According to the Honourable Mr. Justice Nicholas Francis of the High Court’s Family Division, who authored the decision subsequently upheld by the higher courts, death is “in Charlie’s best interests.” There was no “scientific basis” for believing that Charlie would respond positively to the experimental American treatment; meanwhile, there is “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.” “If,” wrote Justice Francis, “Charlie’s damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now?” It was “with a heavy heart,” the judge said, that he sided with the doctors. Charlie should be permitted “to die with dignity.” In conclusion, Justice Francis praised the parents he had just overruled: “Most importantly of all, I want to thank Charlie’s parents for their brave and dignified campaign on his behalf, but more than anything to pay tribute to their absolute dedication to their wonderful boy, from the day that he was born.”
So it was that successive courts in the United Kingdom and in Europe simultaneously found that Connie Yates and Chris Gard had devoted themselves unhesitatingly to their son’s welfare for ten months, and also that Yates and Gard could not be trusted to act in their son’s best interests.
Under what circumstances should the tightest bonds of affection — those between parent and child — be subordinated to the judgment of the state?
These decisions, too, were probably products of “compassion.” But the state does not suffer with the sick. Justice Francis did not “look at the question from the assumed point of view of the child,” as the law naïvely demands; Justice Francis looked at the question from Justice Francis’s point of view.
The question, then, is not what would Charlie Gard want — a question no one can answer. The question is what do we owe to people such as Charlie, who cannot speak for themselves? What duty of care do we owe them simply on account of their being human beings, who are by nature possessed of an inalienable dignity? What obligations do we have to those who suffer, and how should we understand their suffering? And, pertinent to this case, under what circumstances should the tightest bonds of affection — those between parent and child — be subordinated to the judgment of the state?
The precedent established by Charlie Gard’s case will metastasize, as similar decisions have. It will be made to apply to children with more-familiar illnesses and better prognoses; it will be used to dismiss the input of parents whose values and priorities when it comes to medical care and end-of-life issues do not align with those of the state; it may be used simply to clear beds for “worthier” patients in a health-care system with very limited resources. This, presumably, will be “compassionate,” too.
Any day now, they’ll kill Charlie Gard. But it’s in his own best interest. Don’t you see?
— Ian Tuttle is the Thomas L. Rhodes Fellow at the National Review Institute.