When is death a duty? Two days ago, the European Court of Human Rights ruled in favor of doctors over the parents in a battle over a baby with a rare and fatal genetic disease. The ECHR followed rulings from British courts, declaring that doctors in the UK’s National Health Service could stop life support rather than allow the parents to bring Charlie Gard to the US for experimental treatment:
Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. Caused by a genetic mutation, it leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients.
Charlie is on life support and has been in the intensive care unit at the Great Ormond Street Hospital for Children in London since October. His doctors wish to take him off life support, but his parents disagree.
Charlie’s parents, Chris Gard and Connie Yates, wanted the hospital to release Charlie into their custody so they can take him to the United States for an experimental treatment.
“The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit,” a press release from the court announcing the decision said.
The couple had raised nearly £1.4 million for that effort, which would have ended NHS involvement in the case, but the courts decided that they — and not the parents — were in position to decide that death rather than potential treatment was what was best for the child. Now the parents cannot even take the baby home to allow him to die there rather than in hospital, even though they pledged to cover all the costs:
Connie Yates and Chris Gard have been told by Great Ormond Street their son’s life support will be switched off tomorrow but he cannot leave the ward.
The couple’s ‘final wish’ for Charlie has been blocked and his mother Connie said today in a video for MailOnline: ‘We promised our little boy every single day that we would take him home’.
Mr Gard added: ‘We want to give him a bath at home, put him in a cot which he has never slept in but we are now being denied that. We know what day our son is going to die but don’t get a say in how that will happen’.
Note that there was no disagreement between the parents over the course of care they wanted for Charlie. The two of them have lived at the hospital with their baby, and have been equally united in their desire to try anything to save his life. This is not a dispute between relatives over who should have control over care (as was the issue in the Terri Schiavo case) but whether the state or the parents should have the final say. In a single-payer system such as NHS, the courts have clearly ruled that the state has more standing on whether to allow someone to die than the person or his/her nearest relations. And now, the state — through its socialized-medicine providers — refuse to even allow the death to take place under the circumstances desired by the family.
While this case does not directly relate to euthanasia laws, there is nonetheless a cultural and moral link to European embrace of utilitarian policies on life. In this case, neither the patient nor the family wanted an end to a life, but the state ruled that “compassion” demanded the withdrawal of life support even absent the need to conserve resources for care. Critics have long warned that the embrace of euthanasia would eventually transform it from a choice to a duty, and that certainly seems to be what happened in the tragic case of Charlie Gard.
National Review’s Ian Tuttle warns that we’ll see a lot more such cases in the future:
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. …
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?
You’ll see it a lot, and eventually not just in Europe, either. Socialized medicine requires rationing by the state rather than by private-market forces, and that will be true in the US if we continue to go down the single-payer sinkhole.