Are Julian Savulescu and Peter Singer right when they claim that Pope Francis has “sided” with the parents of Charlie Gard? I do not think so.
Eleven-month old Charlie suffers from a rare form of mitochondrial disease. It affects almost every organ in his body. He cannot move or breathe unaided.
As his condition deteriorated, his doctors came to the view that, as further treatment would be ineffective, they should stop trying to keep him alive and, with palliative care, allow him to die.
His parents said that they “would not fight for the quality of life he has now.”
But, doing what just about any parent would do, they searched online for treatments which, even if they would not cure Charlie, might even slightly improve his condition.
His mother found a treatment (called “nucleoside”) used on patients with a less severe mitochondrial condition. A doctor in the United States, contacted by Charlie's parents, said that hypothetically it could be beneficial, though that was unlikely.
Charlie's own doctors considered providing this treatment themselves. They would have needed the authorization of the hospital's ethics committee because it would have been experimental. Ultimately, they decided against doing so.
Through some kind of misunderstanding, the parents thought that funding was an issue. So, by means of a public campaign, they raised sufficient funds to take Charlie to the United States for treatment. In fact, it seems that if his doctors had recommended it, and the ethics committee had authorized it, the treatment would have been provided in Charlie's own hospital at no cost to his parents.
The doctors subsequently sought a Court's judgment that it would be in Charlie's best interests not to undergo nucleoside treatment and instead to have his ventilation withdrawn and to be provided with palliative care only. The Court found in favour of the doctors' decision.
Charlie's parents appealed the decision in several courts. Their appeals were unsuccessful. They then wished to take Charlie home to die.
How should decisions about life-prolonging treatment be made?
In trying to understand what motivated not only the Pope but also U.S. President Donald Trump to comment on the case, it is helpful to consider two issues: How should decisions be made about life-prolonging treatment? Who should make these decisions?
On the first. Medical treatment ought to be therapeutic – that is, it ought to heal. So the benefit at which it aims might be cure (if that is possible), or stabilization, or pain relief, or care for the dying. The key question is: “Will the hoped-for benefits of a proposed treatment compensate the patient for the burdens it will likely impose?” Indeed, having one's life prolonged by medical treatment in such a state as Charlie's might in itself reasonably be considered a burden of medical treatment. It seems that Charlie's doctors thought that the only genuine benefit they could offer Charlie was care for him as he died.
So Savulescu and Singer are quite wrong to claim that the issue in question is whether Charlie's life is “worth living” or whether “it is in Charlie's best interests to die.”
Charlie's life has the same worth as does anyone else's life – that is what we mean by the equality of all human beings. As I say, the issue is whether the benefits that medical treatment can offer Charlie now, in his circumstances, are enough to compensate him for the burdens the treatment will likely impose on him. Treatments reasonably judged to be overly-burdensome may legitimately be forgone, even in circumstances in which it can be foreseen that the patient will die sooner than otherwise he would have.
What doctors have to evaluate is not Charlie's life, but medical treatments available to him.
Nor is the question whether it is in Charlie's “best interests to die.” The question is what medical treatment is in his best interests. If the burdens of a proposed treatment are likely outweigh the benefits it promises, then it is not in Charlie's best interests to have to undergo the treatment that is maintaining or prolonging his life. We need to be more sensitive to the complexities of human affairs than to think that only outcomes matter.
Who should decide?
On the second. Generally-speaking, parents bear the often-onerous responsibility of making decisions about the welfare of their children and, in particular, of authorizing medical treatment. But if doctors think that parents are making a serious mistake, seeking either over-treatment or under-treatment, then they have a responsibility sensitively to try to convince the parents of that, and, if necessary, to involve a court. That is why the attitude of the original U.S. doctor is shocking. He thought nucleoside treatment extremely unlike to help Charlie, but nonetheless he said he would provide it if the parents so desired and could pay for it!
Are the President and the Pope on the same page? The President tweeted that if the United States could help Charlie, they would be delighted to do so. If that tweet was motivated by a culture of “whatever parents wish for and can pay for, even if it is likely to be ineffective,” then it would be an example of medical consumerism at its worst. But if it was prompted by a sense that the parents were being sidelined by medical technocrats, then he and the Pope were of one mind.
For Pope Francis's hope certainly seemed to me to be that the doctors should not, particularly in the last stage of Charlie's life, neglect the desire of his parents to accompany and care for their own child, themselves, until the very end. His hope was expressed just at the time when the parents said that, if Charlie's life-prolonging treatment was to be withdrawn, then they wanted to take their beloved baby home to die.
The Pope's humane hope is entirely at home with a recognition of the sanctity of human life, according to which, though we should never intentionally bring about death, we are not always obliged to prolong life.
But all that was now a week ago. Now the judge is apparently reconsidering the parents' wish that Charlie undergo further treatment. We shall have to wait and see.
Bernadette Tobin is Director of the Plunkett Centre for Ethics, a joint centre of St. Vincent's Hospital, Sydney, and Australian Catholic University. Republished from ABC Religion and Ethics with permission.