The parents of Charlie Gard will stand by as the medical system removes life support from their child and watch him die. That may have been their ultimate fate, but that will be done today because the hospital and the State said so.
Charlie has an extremely rare disease, encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). A highly experimental, but thus far successful, treatment is available in the US. Keep in mind, only a handful of people currently have this disease in the world; 18 have responded to the treatment, according to news reports. None of the children treated thus far have had conditions as advanced as Charlie’s. Overall, we know almost nothing about treating this disease.
The parents have used crowdsourcing to fund travel to the US in order to try the experimental treatment. The hospital refused to let the child be treated, so the parents turned to the courts. Several British courts and finally, on June 27, the European Court of Human Rights, denied the parents the right to care for their child. The hospital won’t even let the parents take Charlie home to die. Life support is to be removed today.
The Catholic Bishops’ Conference of England and Wales, and then Archbishop Vicenzo Paglia, head of the Pontifical Academy for Life, supported the State over the family in deciding what is extraordinary care, all couched in the language of euthanasia.
This is the Aleteia article posted yesterday by John Burger:
The article quotes John Brehany, spokesperson for the National Catholic Bioethics Center, who recalls a 2007 case out of Texas where the child had “no hope of recovery” and that care would cause “pain and suffering indefinitely.” That’s an interesting little story, but I fail to see what it has to do with this case. I have seen no reports of Charlie “disproportionately” suffering, to use the Church’s own language. The parents had one chance left, albeit slim, and they wanted to take it at their own expense. That falls short of “treating those overmastered by their disease,” as Brehany says.
Of all the cases, he talks of one in Texas, which has an immoral “futility” law that allows a medical panel to stop treatment against a patient’s expressed will to continue care because the panel doesn’t think the patient has enough “quality of life.” That leads to Belgium, where it has long been the practice, and is now legal, for obstetricians to euthanize infants without the parents’ permission if they feel the child does not have an adequate quality of life.
We know very little about treating this disease, much less about how Charlie will respond to this experimental treatment. In other words, we have no real “science” on the subject. But we see the thinking: “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?” This is not about the dignity of Charlie’s human life, it is about what the judge and the doctors think about his quality of life . Charlie’s life is of no less value than any other because his disease has damaged his brain. We can likely predict the treatment will have no effect on his brain, but what effect will it have on his life?
So what of Archbishop Paglia’s statement, in lock-step with the Catholic Bishops’ Conference of England and Wales? He quotes narrowly a statement taken out of context about disproportionate measures. The understanding of the Catholic Church, and once upon a time the medical community, of which I am a part, was that it was the patient’s decision as to what is disproportionate. In bioethics, that is called autonomy. Is Paglia along with the bishops of England and Wales suggesting otherwise? If so, they are paving the road to euthanasia.
A hundred years ago, the Catholic Church was a constant and vocal opponent of eugenics; today we see bishops that are lukewarm and timid observers of the far more lethal euthanasia.