The New Neo

Like Charlie Gard before him, British toddler Alfie Evan’s situation highlights not just questions of medical ethics, but the power of the state over the individual.

I wrote about Charlie here. Alfie Evans’ situation differs in some details, but it’s essentially similar.

It used to be that the state would intervene when parents (or other private citizens) wanted to treat their children (or other relatives) in ways that didn’t measure up to a standard of care. For example, there were people whose religion forbade blood transfusions, and sometimes the will of the parents about that was overridden in order to save a child’s life. But the emphasis was nearly always on the state’s interest in treating and saving rather than letting die.

This time (and in the case of Charlie Gard) the state is intervening to stop parents from treating, or from preserving a life the state has decided contains too much suffering, although there’s no indication that Alfie Evans is especially conscious of much of anything.

One would say the case is about money in a country in which the state is in charge of health care, except that here there are other resources that have been offered to the parents. Italy has offered to take him, the Pope has lent support, and yet the parents have been forbidden by the British court to leave the country.

This is a reminder that the liberty tradition across the pond is not as strong as it is here. And yet what happens “over there” often wends its way over here, and there have been hints of that in cases such as that of Jahi McMath. As I wrote here:

A better analogy to the Charlie Gard case [and that of Evans] is that of Jahi McMath, involving a minor child and a dispute between Jahi’s family and her hospital and doctors over the definition of brain death and when life support should end. However, the McMath case was settled by an agreement between the child’s family and the hospital in which the family was allowed to take her from the hospital and continue life support.

If the Charlie Gard case had occurred in the US, however, the legal emphasis differs. In the UK, disputes between parents and doctors are brought to court under an objective best interests of the child standard. But in the United States, in similar cases the best interests “tend to be resolved in favor of parental rights,” according to Dr. John D. Lantos, director of Bioethics Center at Children’s Mercy Kansas City. And, when courts do overrule parents’ wishes in the US, they usually do so to order care over parental objections rather than the opposite.

The different legal standard in the UK was further described by Claire Fenton-Glynn, legal scholar at the University of Cambridge:

“English law”¦does not see parents as having the ”˜right’ to make decisions on behalf of their children. The concept is called parental responsibility: That is, the parent has a responsibility to make decisions, to look after the child,” she said. “Parenthood doesn’t give them rights; parenthood gives them responsibilities.”

And lawyer and ethicist Seema Shah describes the differences between American and British law this way:

Legally, though, US courts are following the same best-interest standard as the UK, but the way it works here, at least in practice, is that “courts are deferring to parents,” Shah said.

By the way, Jahi is still alive (although in a profoundly nonresponsive state) and in a lawsuit filed by her parents there are ongoing battles about whether she is brain dead or not. These cases are not only heartbreakingly sad but they tap into areas of medicine that are unsettled, such as the definition of brain death, as well as philosophical and religious questions about the meaning of life and suffering.

Those questions have no universally agreed-on answers, and I’m not offering any. I see these cases as dealing more with the question of how much the state can intervene to curtail the liberty of parents—not the liberty to cause the death of their child, but the liberty to try to sustain the life of their child. It seems unconscionable to me that they are not allowed to leave the country and avail themselves of whatever hope is left.

At the moment, Alfie is breathing on his own (with some oxygen support, perhaps intermittent?) and the legal battles continue. For example:

In Wednesday’s appeal hearing, Alfie’s legal team argued that the hospital’s original end-of-life plan was based on suppositions that the toddler needed oxygen to survive, Kiska said. The fact that Alfie lived on even without ventilation support was a material change in circumstance and served as grounds for renewing the matter.
It is in Alfie’s best interest to travel to Italy, where doctors are ready to care for him, the legal team argued in court…

Professor Dominic Wilkinson, a consultant neonatologist at the John Radcliffe Hospital and director of Medical Ethics at the Oxford Uehiro Centre for Practical Ethics at the University of Oxford, said, “In Alfie’s case, none of the foreign experts have offered any new treatment or any new outlook for Alfie. The Italian specialists have apparently indicated that they believe that his care should be palliative.”…

Sometimes, the sad fact is that parents do not know what is best for their child,” Wilkinson said. “They are led by their grief and their sadness, their understandable desire to hold on to their child, to request treatment that will not and cannot help.”

I would add that Sometimes, the sad fact is that doctors do not know what is best for anyone. They are led by their hubris and their power, and their understandable desire to hold on to that power, to deny treatment that may not help although they have no way to absolutely know whether it will or won’t.

Remember that in this case no one is asking the British doctors to treat the child against their own medical judgment, and no one is asking the country to pay for the medical treatment of the child. Italy has volunteered to take on the burden. This is what makes the case so frightening—the courts are reaching into matters they have no business controlling. But it is the general nature of institutions to try to increase their power, is it not?

[NOTE: In connection with this, I suggest you take a look at my series of posts on ethicist Peter Singer. Very chilling.]