Do children have the right to die?

International attention turned to Belgium when its parliament voted on Feb. 13 to allow terminally ill children of any age to legally request euthanasia. Widely described as extending the right to die to children, the decision raises a cluster of moral and practical questions.

Let us begin with an obvious one: Do any of us have a right to die? Not really. At best, it might be argued that a general principle of respect for autonomy grounds a moral right to die on our own terms in accordance with our own values. No perfectly general right to die is recognized in the law of any nation. However, the right to die on one’s own terms is given minimal legal expression in the right to refuse treatment and maximal legal expression in the right to euthanasia or to physician-assisted suicide.

Most states in the U.S. lie at the minimal end of this spectrum. Oregon, Washington and Vermont affirmatively recognize physician-assisted suicide, whereby a doctor supplies the means with which a patient can terminate his or her life. And court rulings in Montana and New Mexico protect doctors who assist their terminally ill patients to die. But no U.S. state allows euthanasia. Belgium, on the other hand, lies at the maximal end. It allows “the intentional termination of a patient’s life by a physician at the patient’s request.” And if Belgium’s King Philippe signs the new law, the patient need not be an adult. A terminally ill child of any age may make a legal request for euthanasia. In either case — child or adult — no physician is legally obligated to participate.

Do children have autonomy to the degree required to attribute to them a right to die on their own terms? In other words, are they able — cognitively and emotionally — to make an informed and voluntary decision to be killed?

Critics of the Belgian law say no. Even the Netherlands, which also allows adult euthanasia for the terminally ill, denies that children younger than 12 have the relevant capacities. But what, precisely, is the relationship between chronological age and autonomy?

At no stage of one’s life is autonomy an all-or-nothing matter. For one thing, it depends on cognitive and emotional development. And while such capacities are assumed to operate at their peak in midlife, even adult autonomy can wax and wane. Hence it is quite arbitrary, from a moral point of view, to stipulate any age — 12, 18 or 21 — as marking the onset of full autonomy.

We are talking about a decision to be killed. With stakes this high, it is reasonable to insist that patients be competent to make important decisions. Several legal rights are indexed to chronological age for this reason. In the U.S. the minimum age for sexual consent is 16 to 18, depending on the state; to vote and to consume alcohol, it is 18 and 21, respectively. There is room for argument about these age limits, of course. But legally enforced age limits on some activities are plausibly motivated by the assumption that minors lack a full understanding of the nature of those activities and their consequences. Similarly, critics of the Belgian law argue that children do not understand what they are asking for in requesting euthanasia — namely, death — and that older children who do understand death may not be able to choose it, authentically, for themselves.

Research done by pediatric oncologists, nurses and palliative care specialists undermines this complaint. One model of what it takes to understand death — in particular, that death is irreversible, represents the end of all functions, cannot be caused by bad thoughts and comes to every living thing — suggests a series of diagnostic questions that can be used to assess the extent to which a child has a conception of death. If a child asks “How long do you stay dead?,” “Do dead people get sad?,” “Do I have to die?” or “Do people die because they are bad?,” parents and medical professionals can conclude that the child lacks a true conception of death. 

More tellingly, perhaps, research (PDF) also shows that gravely ill children who have lived for years with serious illness, who have undergone painful and invasive procedures and who have spent lots of time in hospitals with other such children have a pretty good understanding of their mortality and of what they want regarding further treatment. At the very least, then, we ought to recognize that terminally ill children might meaningfully refuse treatment that would only prolong their pain and suffering.

But this does not alleviate all the critics’ concerns.

Children are almost constitutively vulnerable. They are used to obeying and to deferring to others more powerful than they are. Hence we might reasonably fear that children, even those — maybe especially those — who understand death, will opt to refuse treatment or request euthanasia in order to be a good little boy or girl. Precisely the same objection is leveled at suggestions to legalize euthanasia for adults in Britain and the U.S. Critics contend that terminally ill individuals are at times unable to properly acknowledge and give weight to what is in their best interests.

With respect to adults, this contention — enshrined in law — amounts to a morally unpalatable paternalism. But paternalism seems perfectly acceptable with respect to children. Children ask for all manner of things. Sometimes we accede to their demands, and in other cases we do not, typically with an eye to protecting their best interests. But what we do not do is ignore them. Categorically denying suffering, terminally ill children the right to request euthanasia amounts to silencing their perspective on what is perhaps the most important dimension of their existence. Indeed, the very fact that we are talking about the profound choice between life and death — and not something trivial, like eating vegetables — makes it all the more important that children’s voices be heard.

Here it is important to note the conditions under which euthanasia of a child may proceed, according to the Belgian law. The child must be terminally ill, be conscious and understand the meaning of death, make multiple requests to die and be in great pain and distress that no available treatment can alleviate. In addition, the child’s request must be approved by his or her parents and by members of the medical team, including independent psychologists attesting to the child’s competence to make the request. No child will be forced merely to acquiesce to an adult’s request that he or she die.

Practically, these safeguards still leave room for difficulties. For example, only one parent might support a terminally ill child’s request for euthanasia. Or more wrenching, consider a case in which parents support their child’s desire for death but the child has been sedated into unconsciousness for some reason. Should they bring their child out of sedation in order to say goodbye? Awful as these questions are, they do not arise uniquely with respect to the Belgian law. All manner of end-of-life decisions, being made all over the world and involving both adults and children, can implicate them.

While, as noted, some states in the U.S. have moved toward permitting physician-assisted suicide, public opinion about that practice remains sharply divided. There is some evidence, however, that Americans could support legalizing euthanasia, depending on how the debate is framed. Since cancer is the third leading cause of death for children 5 to 14, if and when Americans begin a substantive public dialogue about legalizing euthanasia, we will not be able to avoid speaking of these children.

At the bedside of a terminally ill child who is in constant pain and whose suffering cannot be alleviated, it would be an enormous comfort to be able to reach for a clear rule about what to do. But as most practicing physicians and nurses will tell you, such clear rules are simply not available, and no two cases are alike. This does not show that morality fails us as we face the end of our own lives or the lives of those we love. But it does highlight the fact that moral rules will never be enough by themselves to guide us through the agonizing situations many of us will confront. Everyone involved in the care of the dying needs to exercise wisdom. And when the dying patient is a child, parents and medical personnel alike must distinguish their plight from the plight of the dying child and listen with love and compassion to that child.