Charlie Gard, an infant, is going to die without a treatment that his parents wish to deploy against his mitochondrial DNA depletion syndrome, a treatment that they can afford thanks to the generosity of others. The highest court in Europe has sided with the English hospital’s wishes that Charlie “die with dignity” over his parents’ wish that he be released into their custody to try an experimental treatment in America. Further, it is decided by the principalities and powers that Charlie is going to die in that hospital even though his parents would at least wish for him to come home with them.
Millions of people have been following this unfolding tragedy. And there is quite a lot of sensationalism in the press coverage. But not just in the press coverage. Gard’s parents, knowing that so many are rooting for them and praying for them, have released videos on YouTube, which I can barely bring myself to watch. They have a hostage-situation feel that is Kafkaesque. I’ve got a five-month-old infant lying next to me as I write, and am friends with young fathers of infants. An experience is now common to us all this week. Husbands turn to wives and say, “Have you heard about this case in England?” A reply comes instantly, “I can’t talk about it, it’s too upsetting.”
The millions who have been following this story feel they know how it should be resolved; that Gard’s parents — not the doctors in an English hospital, not the European Court of Human Rights — should have the final say over whether Charlie can be released to his parents’ care and brought to America to receive this treatment. Or if the courts, after consultation with the doctors, insist on restraining them from traveling, that the hospital should honor the parents’ wish, expressed for months, to take him home, give him a bath, and cuddle him in his final hours
These millions of people feel something sudden when the doctors’ decisions and those of the court are dressed, as they are, in the language of euthanasia. And they feel themselves crying out for an authority figure to point out the obvious, to speak with clarity about the duty of the state to get out of the way of parents trying to act in the best interests of their child. They want someone to step in and say that NHS and the British state may have given up on Charlie Gard’s life, but his parents and other doctors are not obliged to do the same if they reasonably believe this other treatment could help.
Here was a moment for the Vatican to stand up and announce what the Catholic faith teaches about human life and our duties to one another, and the God-given authority of parents over their children. And it was a moment in which such a statement would resound with an attentive audience. It was not to come.
In fact, the statement from Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life, patronizes Charlie Gard’s parents even as it distorts their situation and endorses a legal judgment against their wishes that was clothed in the language of euthanasia advocates.
After two paragraphs expressing his admiration for the parents and doctors in this case, Paglia’s statement announces his moral reasoning this way:
The proper question to be raised in this and in any other unfortunately similar case is this: what are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family. Likewise, the wishes of parents must be heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone. If the relationship between doctor and patient (or parents as in Charlie’s case) is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.
Paglia is on solid theoretical ground when he says that there is a judgment to be made, and that it is good to avoid “aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” No one is morally obliged to be kept alive by machines all their life, or continue undergoing radical surgeries or procedures that delay death. No one is obliged to empty their entire fortune and the state isn’t obliged to expend the public treasury on uncertain treatment.
So it may be the case that Charlie Gard’s parents would be adding to the suffering of their son by traveling to America with him while he is mortally ill. It may be the wrong decision, but it should still be their decision. And the nucleoside bypass therapy they want for their son is hardly likely to increase Charlie’s suffering, as it is not an invasive or radical surgery, it is an oral medication.
Other parents whose children suffered from a similar condition and were deemed to have no hope, have seen recovery through this therapy, though the potential administering doctor in America admits that given Gard’s unique strain of mitochondrial DNA depletion, “It is very unlikely that he will improve with that therapy.” Of course, it is impossible to know, since no one in Gard’s condition has been treated in this way.
Besides being patronizing, the Vatican’s statement is a gross distortion of the situation.
But besides being patronizing, the Vatican’s statement is a gross distortion of the situation. It portrays the Gards as acting alongside the doctors, but subject to outside manipulation. The Gards are resisting the doctors. The Gards are not facing “their decisions.” They are facing authorities that have overridden them. The good bishop writes that the Gards “must be heard and respected, but they too must be helped to understand the unique difficulty of their situation.” The people “helping” them to understand are speaking in the euphemisms of “death with dignity.”
I’m not surprised, really. The Vatican has lately found itself assimilating to the bourgeois morality that makes European life spiritually desolate. The Church has trouble denouncing respectable sins and lately finds moral heroism unseemly or suspicious. The Vatican has recently added a pro-choice Anglican to the Pontifical Academy for Life, a move praised by the Pope’s apologists as a welcome sign of loosening up. The Pope now rents out the Sistine Chapel to the likes of Porsche for private fundraising events. The Church has even found a way of blessing people in second marriages they used to call out as public adultery. That the Vatican’s men would serve as apologists for the erosion of parental authority by a state anxious to override the family in its quest to give us “death with dignity” follows from the rest.
If the Church cannot stand for the family against the courts, who will? This is worse than a missed opportunity and puts one in mind of the prophets. “The Lord was as an enemy: he hath swallowed up Israel, he hath swallowed up all her palaces: he hath destroyed his strong holds, and hath increased in the daughter of Judah mourning and lamentation. And he hath violently taken away his tabernacle, as if it were of a garden: he hath destroyed his places of the assembly: the Lord hath caused the solemn feasts and sabbaths to be forgotten in Zion, and hath despised in the indignation of his anger the king and the priest.” Lamentations 2:5–6
— Michael Brendan Dougherty is a senior writer at National Review.