In England, an infant named Charlie Gard, who was born with encephalomyopathic mitochondrial DNA depletion syndrome, was at the center of a controversy. His parents wanted to bring him to the United States for an experimental treatment that they hoped might help him, but his doctors wanted to remove his life support and give him what they called a dignified death. In the United States, the parents would have prevailed in such a controversy unless they were deemed unfit. But in the United Kingdom, a lawyer is appointed for the baby and can argue for what he or she believes is in the child’s best interests. In this column, I want to take up the question of how, starting from first principles, we could best handle a controversy like the one over Charlie Gard’s care, given that his parents wishes conflicted with those of the doctors at the hospital. At this time, however, note that Charlie’s parents have given up their fight to have their son treated in the United States and, in a press conference, said that they were ready to let their son go and be with the angels. He has since passed away. Despite this sad ending, the controversy that preceded it remains relevant to our thinking about how to handle disputes between parents and others about what is best for their children.
Charlie Gard’s Legal Journey
When the controversy began, Charlie was in the terminal stages of a very rare genetic condition that is typically fatal in infancy or early childhood and for which there is no cure. His doctors applied for permission to turn off Charlie’s ventilator. His parents disagreed with the doctors’ assessment of what should happen to Charlie and raised enough money to be able to take him to the U.S. for treatment.
In the legal battle, first the High Court ruled that the ventilator should be turned off, because it would be cruel to further extend Charlie’s life. Despite Charlie’s parents’ pleas, the Court of Appeal judges upheld the High Court’s ruling. The Supreme Court then agreed to hear the case and ruled, like the lower courts, that the life support must be switched off. The European Court of Human Rights later declined to intervene on the parents’ behalf and lifted its own interim order that required the continuation of life support. The case returned to the High Court when the child’s parents asked for permission to take their son to the U.S. for a “miracle” treatment. But the parents have since then changed their mind about that and agreed that their son should be taken off life support.
A new conflict arose, however, when the boy’s parents indicated a desire to take their son home for his final days. The hospital fought this plan in court, arguing that the child’s medical needs could not be met at home. Once before the court, the parents said that instead of taking him home, they would seek to move him to a hospice. The judge at the high court gave the parties a deadline for making arrangements for the child and ruled that if the deadline passed without the parties arranging something, the boy would be transferred to a hospice and his life support discontinued shortly after the transfer. He was since then taken to a hospice and has passed away.
Starting From First Principles
Looking at Charlie’s journey from an American perspective, I cannot help but find it jarring that his doctors were in any position to dictate (or to argue for the authority to dictate) Charlie’s course of treatment. I would be inclined to view Charlie as the patient and his parents as the people who were best able to represent his interests and act on the basis of their love for him and their desire to give him what he needs. Absent evidence that they were not looking out for his best interests, I would think that the best course would be to defer to their wishes regarding how and whether Charlie should be receiving treatment.
If we start from first principles, we might articulate the rule this way: a baby’s parents are well situated to make medical decisions for the baby, because they presumptively have his best interests as their guide. We might want to scrutinize the parents’ motives on occasion, when the stakes are very high, such as when there is a choice to be made between taking the child off life support and providing him with a highly experimental treatment. If we want to examine whether the parents are truly acting in their child’s best interests, the question should not be “Is it in his best interests to have the treatment?” The question, instead, should be “Are the parents motivated, in their decision (regardless of what the decision is), by a desire to further their child’s best interests?” If the answer to this question is yes, then we ought to defer to the decision that the parents make. (This assumes, of course, that the substantive decision falls within the realm of arguably reasonable options; if they wanted to throw their child out a window or cut him up, they would deserve no deference).
To give an analogy from a less fraught arena of parental decision-making, parents routinely decide whether to give their children a Benadryl before a night-time airline flight. If we were to ask whether it is in the child’s best interests to take the Benadryl, we might well conclude that it is not. But we do not interfere with the parents’ choice—and we do not engage in an inquiry about each decision the parents make on the child’s behalf—because we trust the parents to do their best to meet their child’s needs and to make choices that are best for him or her.
Imagine, however, that we decided that the choice about the Benadryl is worthy of extra scrutiny. In that case, we would, on my approach, ask whether the parents are motivated by doing what is in the best interests of their child when they give him the Benadryl. If the answer is yes (because, for example, they believe he will feel more comfortable and able to sleep during the flight, when he would otherwise be anxious and agitated), then we defer to the parents on their decision. On the other hand, if we conclude that the parents are giving their child Benadryl so that he will fall asleep and won’t annoy them by talking and otherwise engaging with them during the flight, then even if they generally look out for his best interests, it would appear that they are not doing so in this case, and we might then want to take the decision away from them. What we would not do in this hypothetical scenario is ask in the first instance whether in our view, Benadryl is in fact in the child’s best interests: our inquiry into the parents’ decision-making is, in other words, a process inquiry, not a substantive one.
Coming back to Charlie Gard, the decision whether to take the child off life support was obviously an extremely important, high stakes matter. It therefore may have made sense to inquire closely whether the parents—in reaching their decision to try to get the child treatment—were acting in their son’s best interests. As in the Benadryl hypothetical case, our question would not have been the bottom line inquiry about what course of action was, in our view, best for Charlie. The question would have been a more deferential one: were the parents motivated (not just in general but in this particular decision-making juncture) by their desire to pursue their child’s best interests?
We might have concluded that Charlie’s parents were not properly motivated if they were simply committed to life at any cost. Then we might have determined that rather than trying to do what is best for their child, they were simply imposing their religious or ideological agenda on their son. By the same token, if they wanted to take him off life support and we concluded that they were motivated by their own physical or emotional fatigue, then we might also see fit to take the decision out of their hands, because in this case too, they would not have been driven in their decision-making by a wish to pursue their child’s best interests.
The process of reviewing the parents’ motives to determine whether they were acting in their child’s best interests would necessarily be controversial. Ruling out religious motivations, for example, requires a value judgment about the competing claims of religion and the child’s wellbeing. A religious individual might say that it is in the child’s best interests to have his parents looking out for his spiritual wellbeing by bringing religious rules to bear on their decision. It is a secular value that says that if religion is driving the decision to keep the child on life support, then the parents are not pursuing the child’s best interests. Similarly, in the case of the Benadryl, a view of parental authority that is more robust than mine might hold that keeping the child quiet so the parents can relax is in the child’s best interests as a member of a family in which parental status is firmly in place. Viewing the child’s interests as separate from the parents’ requires a value judgment about the relative status of parents and children, a judgment necessary to the conclusion that pursuing parental relaxation by drugging the child does not come from a “best interests of the child” motivation.
In short, I would reject the United Kingdom approach, which apparently allows doctors to argue against parents on the bottom line question of what is in a child’s best interests. I would, first, defer to parental decisions about their child’s health care, on the assumption that parents generally look out for their children’s best interests and do so more reliably and effectively than either doctors or courts can do. Because the case involves a life-or-death choice, however, I might be prepared to scrutinize the motives of the parents to make sure that in this case, they are being driven in their decision by the desire to do what is best for their child. If they are so motivated, then that would be the end of my inquiry, and the parents would be allowed to do what they want to do for their child. Only if the scrutiny revealed that the parents were in this decision motivated by something other than their child’s best interests would I take the choice away from them and have a court consider the pros and cons and come up with an answer to the question of what would best serve the child’s interests.
Another Striking Difference Between the United Kingdom and the United States
Apart from exposing the willingness of courts in the U.K. to intervene in the choices of parents about their children and make independent decisions about children’s best interests, the Charlie Gard case tells us something else about the U.K. and perhaps about Europe as well (in light of the ECHR ruling). If parents in the United States wanted to treat their child’s illness, and the alternative was taking the child off life support, it is hard to imagine a judge interfering with the parents’ decision, in part because we have a “life is sacred” ethic in this country that seems religious in origin and that would lead most courts to conclude that of course the parents are doing what is best for their child by not ending his life. But that assumption ought to be subject to scrutiny.
If a child like Charlie Gard is slowly dying and is perhaps suffering, and if the proposed treatment is extremely unlikely to have any positive effect on him, then it is to the credit of the U.K. that its courts are willing to entertain the possibility that death is in the child’s best interests. Hence my conclusion about the U.K. is that it ought to give greater weight to parental rights vis-à-vis their children but that it may have something to teach the U.S. about accepting the reality that death may sometimes be the best option, as painful and heartbreaking as that is, for fulfilling the best interests of a child.