If possible, we all want problems and issues solved with simple and neat answers. We also prefer stories with heroes and villains, but what if the story has neither, or the actors are simultaneously heroic and villainous? As medical technology advances, we're seeing ever more complicated plot lines, but often still with tragic outcomes. The recent case of the British infant named Charlie Gard is no exception.
While the case was slow to emerge, at least outside of the Britain, the story of Charlie Gard has now become distressingly familiar. Gard had a seemingly normal birth in August, 2016 in Britain, but within a month developed life threatening brain damage. Doctors concluded that he suffers from a genetic disorder referred to as MDDS. There are only 16 known cases of the disease in the world at this time.
Everyone agrees his story is tragic, made even more so by the pictures of the child on life support, but that is about the only agreement there is. I believe five broad issues have emerged from this case. Unfortunately, none of the issues has the simple, straightforward resolution everyone wants. Let's examine each of them.
Issue #1: Who gets to decide?
A number of months ago the doctors caring for Charlie concluded that they could provide no more care to him, and that additional measures would be futile. His parents, not unexpectedly, disagreed. Under British law, when there is such a disagreement between medical professionals and the parents, the dispute is referred to the legal system. The court hearing the case ruled against Charlie's parents, citing what is referred to as the "Futile Care Doctrine", meaning that it makes no sense to continue care when it has been concluded that additional efforts would be futile. The court decision was not overturned at any of the three possible courts of appeal, the highest being the European Court of Justice.
In the USA, parents have broader rights to decide about the care of their sick children, so there's a good chance the outcome might have been different. Conservative groups are decrying the outcome, viewing the British and European decisions as evidence of encroaching state power on decisions of life and death, which many, maybe most, believe should only be made by the family, not the government.
Should the parents have the ultimate say in what happens to Charlie? Over the past several months, the parents reportedly have been fighting to bring Charlie to the USA for an experimental procedure. Others, including Pope Francis and President Donald Trump, have encouraged the same, but the British and European courts apparently are saying "no". The immediate reaction of many is to grant Charlie's parents the right to make that decision. Thus, many say the parents should at least be able to decide to bring the child home to die.
But what if the parents decide to take up the offer of the Pope, and others, to move Charlie for care in another country? Well, that would up some additional, complicated issues. Let's consider those.
Issue #2: Should care be provided at all costs?
100 years ago, there never would have been a Charlie Gard case. The technology simply didn't exist to keep the child alive, so he would likely have passed away well before this point. Now there is technology to keep a person alive for very long periods of time. This raises the question, should care be provided at all costs? In Charlie's case, there is no known treatment. There is a potential experimental treatment, but it hasn't been tested yet. We'll consider that issue in a moment.
There are countless cases today of patients being kept alive, or given active treatment, in the hopes that they will recover. Much of this care is at tremendous cost.
Commenting on the case for the New York Times, O. Carter Snead, a law professor at the University of Notre Dame and the director of its Center for Ethics and Culture, said, "Pope Francis believes, along with Charlie's parents, that his life — all life — is worth fighting for, regardless of the presence of disability." This suggests that care should be provided at all costs.
The Times, however, went on to provide a contrasting viewpoint. John M. Haas, the president of the National Catholic Bioethics Center in Philadelphia, said the church teaching was clear that it was not morally necessary to provide life-sustaining treatment if there was no hope of improvement. Haas has counseled many Roman Catholic parents with children suffering from incurable diseases or on life support. Haas said,
."The poor child is suffering from an incurable genetic disorder that can't be cured, so there is no question that there is no moral obligation to continue intervention, according to Catholic teaching," At the same time, he also said, "On the other hand, that doesn't mean there is a moral obligation to stop life support."
Do religious leaders have a particular viewpoint about this issue? Robert D. Truog, a pediatric intensive care physician at Boston Children's Hospital and director of the Center for Bioethics at Harvard Medical School, told the Times that in his decades of experience dealing with priests, rabbis, and imams advising families in hospital wards, none of the major religions appeared to support extending life at all costs. The Times said that Truog was troubled by the Vatican's proposal to take Charlie. Truog said, "They could keep the child such as Charlie alive for a period of time, but given that Charlie has an irreversible brain injury, toward what purpose?"
The argument for keeping Charlie alive is the potential to conduct experimental medicine. Which brings us to the third key issue.
Issue #3: Under what conditions should experimental care be provided?
The reason Charlie's case was referred to the courts was because Charlie's parents and doctors disagreed on next steps for treatment. His parents wanted to bring him to the USA for possible experimental treatment. The provision of experimental treatment on very sick patients has become fairly routine. My own family has experience with this. A key problem in Charlie's case, however, is that the proposed treatment is at such an early stage, it hasn't even been tested on lab animals, normally an essential first step.
Experimental medicine is carefully regulated, a fundamental reason being patient safety. As an example, all drugs are first subjected to rigorous testing, not simply to demonstrate efficacy, but also in order to avoid injury or death. If Charlie's parents receive their wish, all of those safety protocols would be thrown out. Is that wise? One might make an argument that if Charlie is truly terminally ill and with no prospect for recovery, then what is there to lose by conducting the tests? Something positive might be learned and, while it might never help Charlie, it might help the next patient with MDDS.
Charlie's case might be classed as a "oh well, might as well do it, we have nothing to lose" one. However, that might well lead us down a slippery slope towards eliminating many types of drug safety testing. Admittedly, there are some who believe much of the work done by the FDA is a waste of time, but likely far more who believe a more conservative approach to safety is best.
A possible outcome is that regulators will create a special category of "oh well, might as well do it, we have nothing to lose" drug testing. If so, patients such as Charlie might begin to receive experimental treatments they might not otherwise receive. Sooner or later, some type of breakthrough might occur for some disease class, in which case most everyone will be glad that an exception was made. Unfortunately, that won't necessarily solve the problem. That's because there will be another Charlie Gard. Maybe not the same disease, but there will be another equally heartbreaking case. The difference is that perhaps the next case won't be quite so hopeless as Charlie's. If so, then the decision about doing experimental treatment will be equally difficult. Which leads us to the fourth issue.
Issue #4: Are there limits to experimental care?
Imagine that Charlie actually has a chance for survival if the experimental therapy works. Should the fact that the experimental therapy hasn't even been tested on lab animals be ignored? Is it worth subjecting Charlie to a whole series of risks related to the therapy because it may work? In that case, we'll be back to the "oh well, might as well, what have we to lose?" scenario. This brings us to the entire question of the proper role of agencies such as the Food and Drug Administration.
The question of experimental care, as well as many other aspects of this case, however, leads us back to a part of the original problem, and a fifth issue.
Issue #5: What is the proper role of government in all of this?
The first issue discussed above concerned who should make the decision about Charlie. Most people likely think that the family should make such decisions. Conservatives, in particular, want that, and want to minimize the role of the government and other third parties. At the end of the day, however, one still needs to figure what the proper role of the government is in all of this. I role of government can't be overlooked, particular with respect to several aspects of this.
The first is experimental medicine. Do we want to give doctors and researchers a "blank check" to do medical research without any controls? There are some who advocate this, but doing that would create other problems. After all, the Food & Drug Administration was created to deal with that very problem.
Second, unfortunately, is the matter of cost. If someone is going to spend their own money to provide care to a family member at any cost, few people would object. After all, it's their money. However, most of the time, the money being spent in providing the care to patients like Charlie is other people's money. Are we prepared to give everyone in this situation a blank check? When we're in the situation of the Gard family, we want everyone else to provide us a blank check, but are we equally prepared to give every other "Gard family" a blank check? The USA spends more than twice as much as any other country on healthcare. Unfortunately, our medical outcomes are mediocre at best, with life expectancy not even as high as Cuba's. It's likely to get even worse. Given that's the case, government needs to play a role in the allocation of healthcare resources.
As I said at the outset, Charlie Gard's story is a terribly sad one. Because medical technology continues to advance, we're going to see more and more such cases. They likely won't involve MDDS, but they'll be equally terrible ones. Our instinctive desire is to look for clear cut and simple answers. We also want to create heroes and villains. Some conservatives are trying to turn Charlie's case into one of villainous bioethics committees, and representatives of government, usurping the rightful power of individuals to make decisions about care. Unfortunately, it just isn't that simple. But, at the same time, the conservatives have a legitimate concern. For each decision rule we create, we raise possible problems for the next, equally sad, case; and for each new technology we develop, we create potential new versions of the Charlie Gard story. I wish it weren't that way, but our desire for simple, neat, clean solutions just isn't realistic.