Parents v. Hospital: the Charlie Gard story

Every once in a while, what begins as a heartbreaking human interest story takes on a life of its own and forces the public to pay attention. Sometimes that story, in addition to arousing intense feelings in its readers and listeners, actually has something to teach us about the world we live in and the institutions that we have created in an effort to make that world a little less random.

The story of Charlie Gard — an eleven month old British boy dying of a rare genetic disease — is such a story. By now we know the basics. The doctors in the British hospital in which he is being treated say they can do no more for him, and they have gone to court for permission to turn off the respirator that is enabling him to breathe.

Charlie’s parents, however, are not yet willing to let him go. Although there are no guarantees, there is an experimental treatment, available at one hospital in the United States, that might help him. That American hospital is prepared to admit him for that treatment, without charge if necessary, or to work with a British hospital in managing the treatment if transporting him is deemed too risky. His parents have raised more than 1 million pounds to pay for his transfer and treatment. Both President Donald Trump and Pope Francis have expressed support for Charlie’s parents and have offered to help if needed. A petition signed by more than three hundred fifty thousand Britons has supported the parents.

It seems to me that this is where the story should end as a legal or political matter. The only remaining question should be the medical one: will the treatment work, and if so how well? In this situation, you have two loving responsible parents who both agree that they want to do everything in their power to enable their son to live. You have a reputable hospital that offers an experimental treatment that the parents both want to try. You have a sufficient sum of money raised privately to enable the transfer to take place without any further burden on the British taxpayer. What more is there to talk about?

In Britain, apparently, quite a bit. The hospital went to court to get permission to take Charlie off the respirator that is enabling him to breathe. The court granted that permission, finding that continuing his treatment would not be in Charlie’s best interests. Britain’s Supreme Court affirmed, finding that it was bound by the trial court’s best interests finding. The European Court of Human Rights has refused to intervene.

The story was even raised during Prime Minister’s questions in the House of Commons. Prime Minister Theresa May expressed sympathy with the parents, but seemed more concerned about the hospital’s reputation. She did express confidence that the hospital would be prepared to reconsider if it received new information; it’s not clear whether she has any standing to interfere..

In the latest development, however, the hospital (which pursuant to the courts’ orders is permitted but not required to disconnect Charlie’s respirator) appears to have taken the Prime Minister’s hint and has announced that it is reconsidering its stance, supposedly based on new medical evidence. Would it be cynical of me to wonder whether concern about bad PR might have been a significant factor in the hospital’s changed stance?

Without the public outcry, Charlie’s parents would have had no chance of prevailing. There is a downside, however, to Charlie’s sudden high profile. Some of the support he and his family have received has come from those with decidedly mixed motives. Some people may be less sympathetic to Charlie and his parents based on who some of his supporters are. President Trump’s involvement, in particular, may scare away some potential support.

It is a coincidence — but an ironic one — that Charlie’s situation has come to public attention just as the US is engaged in an intense debate about health care. President Trump has no hesitation in supporting legislation that would deprive millions of needed medical care, yet he is giving a higher priority to one desperately ill child than to the far larger number of children who will suffer because of inadequate medical care but whose plights will not make international headlines. President Trump’s itchy Twitter finger seems to taint whatever it touches, but our feelings of sympathy and support for Charlie’s parents should not be affected. We need to remember that some things are true even if Trump believes them, and some things are wrong even if he complains about them.

Because of the coincidence of timing, the case has revived the scare mongering talk of “death panels,” and rationed care as well as the legitimate concern about crossing the line separating the right to die from the duty to die. It’s important to recognize what Charlie Gard’s story is not about. It’s not about the right of a consenting adult to refuse treatment. It’s not one of those heartrending situations in which family members disagree about when to cease further medical intervention. It’s not even about whether health insurance, public or private, should cover treatments that are unproven or are deemed experimental. And it’s emphatically not about the merits or deficiencies of Obamacare, or any other system to which the pejorative label “socialized medicine” can (plausibly or implausibly) be attached.

Please don’t misunderstand me. Any health care system in which the expenses of care are being borne by someone other than the patient will sooner or later have to confront the problem of limits. How long should a patient be sustained by artificial means when hope of recovery is gone? How far should we go in seeking unproven therapies when medical science has nothing to offer? When and for how long do we continue treating a patient aggressively when his or her own body seem to be signaling that it’s had enough?

These questions are serious ones, and they deserve more thoughtful consideration than the hyper-partisan Obamacare debate has thus far allowed. Many on the right seem to assume that limits on care become relevant only when government gets involved, but I must concede that I find the logic of that position hard to follow. Health Insurance companies have surely demonstrated over the years that they are perfectly capable of denying treatments unreasonably without any help from the government. I must admit that if my fate or that of those I care about were to be decided by a bureaucrat, I would prefer a government bureaucrat to an insurance company bureaucrat. He may be unsympathetic, but at least he doesn’t have a built-in institutional bias favoring a denial of coverage.

In any event, the Charlie Gard story is emphatically not about money, since the parents have raised enough money to cover the expenses of the treatment they seek. Indeed, while the British are justifiably proud of their National Health Service, they recognize its limits, and it is not unusual for those who can afford it to “go private” for specific medical procedures. The issue in this case is simply whether parents — at least when both are in agreement — can be trusted to make medical decisions for their young children or whether they should be forced to defer to the “superior wisdom” of doctors and courts as to what is in their child’s best interests. The paternalistic assumption that parents cannot be trusted to make medical decisions for their children undermines the centrality of the family in Western civilization. What I find most disturbing is that this paternalistic assumption is apparently so ingrained in the European mindset that it doesn’t seem to have occurred to anyone to question it.

As I write these words, the end of the Charlie Gard story is not yet known. We don’t know whether the obstacles to the experimental treatment that his parents want for him will be removed. We can’t tell whether the hospital will soften its position or the courts, which have agreed to reconsider the matter, will change their rulings. Most of all, we have no way to know whether the treatment, if he is able to receive it, will lead to an improvement in his condition.

All that must be left to the future. But whatever the outcome, Charlie and his parents have already accomplished something of note. They have demonstrated that there are still people, in Britain and elsewhere, who instinctively reject the paternalistic view that favors bureaucracy over family. That paternalism that has apparently infected the legal systems of the West, but it can be resisted. Charlie’s parents have demonstrated that. The rest is up to us.