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By James Lindemann Nelson, PhD
Marie and Paul are both in the late stages of a terminal illness. Both know that they’ve only a short time to live and, despite good palliative care, both find waiting for their deaths to be unbearably awful. Their caregivers are having a very tough time controlling their pain and aren’t at all confident that they’ll be able to do much better. Marie and Paul are as clear about the irrevocable character of death as anyone can be; they’re each equally clear that they want to die as soon as possible.
Paul and Marie live in a country where euthanasia is legal and carefully monitored. Their requests have been vetted by an interdisciplinary team of professionals who certify their competence in general and their grasp of their own situations in particular. Should they be killed?
This is tough question. There are many thoughtful people of good will who think that, legal or not, it is always seriously wrong to take human life, or innocent human life, or who aren’t convinced that there are no realistic options that will relieve suffering without killing. Others think that, while in principle it might not be immoral to satisfy some requests for euthanasia, no general policy can reliably sort out the justifiable cases, or that there could be no policy whose bad consequences wouldn’t outweigh any good they might do.
Yet there are many equally thoughtful and well disposed people who think that, in carefully identified circumstances—for example, circumstances like those in which Marie and Paul find themselves—euthanasia is a morally acceptable option. If you’re inclined to share this view, consider this: Marie just passed her 18th birthday; Paul is six months shy of his. Does that difference mean that, while killing Marie is allowable, killing Paul is wrong?
In Belgium, they tend to think not. Euthanasia has been legal there since 2002, but only available to people eighteen year of age or older. In March of this year, King Philippe signed into law a measure passed by parliament removing the age limit; euthanasia is now available to terminally ill patients who are undergoing unbearable and unrelievable suffering without an age limit. Those younger than eighteen have to request euthanasia explicitly and voluntarily, have the concurrence of both parents (or of their guardians), and be free of intellectual impairment or of mental illness. Further, a multidisciplinary panel must determine that the child requesting euthanasia has the kind of discernment necessary to understand what they are requesting.
Now, if the thoughtful critics are right, and euthanasia is as such immoral, or as such impossible or highly unlikely to turn into a legitimate medical procedure without doing more harm than good, than this legislation is ill considered. Yet if euthanasia’s thoughtful champions are right—if, say, the standing Belgian law were defensible—what then? Has an irrationally arbitrary barrier been eliminated, as the story of Paul and Marie is supposed to suggest? Or have the gates been open to killing terminally ill children, highly vulnerable to manipulation, who may be more of a burden to their caregivers than to themselves?
In a new article in JAMA, “Pediatric Euthanasia in Belgium: Disturbing Developments,” Arthur Siegal, Arthur Caplan, and MSU alumnus Dominic Sisti argue that limiting euthanasia to adults is not arbitrary. They don’t rely on speculation that other people would pressure terminally ill kids into requesting euthanasia. Rather, assuming (for sake of argument) that killing patients is a defensible response to the triggering conditions specified in Belgian law, they claim that a necessary condition for euthanasia’s justification—unbearable, unrelievable suffering—is one to which children are not vulnerable. They write:
What the law does not consider, however, is that adults choose euthanasia for reasons that go beyond pain. For adults, the decision to end their life can be based upon the fear of a loss of control, not wanting to burden others, or the desire not to spend their final days of life fully sedated. These desires might be supported by the experience they have had witnessing a loved one express a loss of dignity or because they understand what terminal sedation is and wish to refuse it. Children, however, lack the intellectual capacity to develop a sophisticated preference against palliative interventions of last resort. Instead, in the case of the new Belgian law, children seem to be asked to choose between unbearable suffering on the one hand and death on the other. (JAMA. Published online April 17, 2014. doi:10.1001/jama.2014.4257)
This seems open to an immediate rejoinder: even if children are not susceptible to the affront to dignity that some last resort palliative interventions might be thought to present, even if they don’t (or oughtn’t to?) worry about burdening others, and even if they don’t experience loss of control as humiliation, they can still suffer intense pain. The rebuttal seems equally immediate: there is no need for those kids to suffer agonizing pain, and no need to kill them to avoid it. If all other palliative resources fail, there is always terminal sedation as a possibility. While some adults might have well-considered reasons to reject that option, no child could.
The problem here is that “child” covers a lot of territory. The image that really powers the Siegal-Sisti-Caplan argument is the specter of giving lethal injections to 10 year olds. It isn’t clear that their argument is at all compelling in a case like Paul’s. Is it really out of the question that a 17 year old might have a sense of his own dignity, a mature interest in maintaining some measure of control over what befalls him, or a loving concern for the sufferings of his family, such that euthanasia would seem preferable to terminal sedation? If so, then we need to worry about cases like Marie’s as well; there is nothing magic about a few months. If not, perhaps the lesson of Siegal, Sisti, and Caplan’s paper is the need for the Belgians to be sure that their “discernment” criterion is alert to whether minors who request euthanasia can suffer in ways that opiates can’t extinguish.
There are, of course, rather deep complications remaining. The JAMA authors hold that, for children anyway, aggressive palliative care—even care that risks hastening death—is morally preferable to interventions whose use must involve an intention to kill. They call for more education and clinical guidance, and there’s reason to think it’s needed, even when aggressive palliation is available. According to a recent article on the use of terminal sedation in pediatric populations in Flanders, Belgium, by Pousset and colleagues, nearly a quarter of the physicians involved reported that they had intended to secure the child’s death via terminal sedation, which ought to be worrisome for those like Siegal, Sisti, and Caplan, who place great moral weight on the notion of intent. Of more general concern might be the following findings: very few of the children Pousset et al. studied had requested terminal sedation, and in over twenty percent of cases, there was no parental consent. (J Pain Symptom Manage. 2011 Feb;41(2):449-55. doi: 10.1016/j.jpainsymman.2010.04.025. Epub 2010 Dec 10.)
One place, then, that the “Disturbing Developments” article might take us is into the arcana of action theory and the lore of double effect to explore further whether the notion of intention can do the work that Siegal, Sisti, and Caplan ask it to do. (For those so inclined, a place to start might be the entry, “Doctrine of Double Effect” in the Stanford Encyclopedia of Philosophy.)
My own inclination at this point in the discussion is to look harder at the idea of arbitrariness. If euthanasia has a legitimate place in end-of-life care, the new Belgian law invites reflection on how serious a matter is it to deny that option it to those who might want to choose it. No one is confused about the arbitrariness of age limits in general terms: there will always be some people younger that the stipulated limit who could out-perform some of those older—who could, for example, vote more wisely or drive more safely. Still, as a matter of social policy, we are willing to withhold franchise from those bright, well-informed, and politically passionate 17 year olds who could vote much more thoughtfully that many 18 year olds (or 60 year olds, for that matter); we’re quite willing to force mature and highly coordinated 14 year olds who could drive competently to wait, rather than set up less crude ways of detecting readiness. Yet if this is an injustice to the young people involved, it seems a small one; almost before they know it, they will cross the age line. At least for many gravely ill children, the same remedy is, most sadly, not to hand.
References:
Gerlin A. Child Euthanasia Law in Belgium First to End Age Limits. Bloomberg. Mar 26, 2014. Retrieved from: http://www.bloomberg.com/news/2014-03-26/child-euthanasia-law-in-belgium-first-to-end-age-limits.html
Pousset G, Bilsen J, Cohen J, Mortier F, Deliens L. Continuous deep sedation at the end of life of children in Flanders, Belgium. J Pain Symptom Manage. Feb 2011;41(2):449-455. doi: 10.1016/j.jpainsymman.2010.04.025. Epub 2010 Dec 10.
Siegel MA, Sisti DA, Caplan AL. Pediatric Euthanasia in Belgium: Disturbing Developments. JAMA. 2014;():. doi:10.1001/jama.2014.4257. Epub Apr 17, 2014.
James Lindemann Nelson, PhD, is a Professor of Philosophy in the College of Arts and Letters at Michigan State University.
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MSU Bioethics 
Professor Nelson’s thoughtful response to our essay raises a host of important considerations.
His primary concern turns on a question of arbitrariness about age, competence and consent. We indicate that requests for euthanasia from adults seem more legitimate than requests from children or adolescents. He disagrees.
While it is true that there are certainly cases of competency in which children, adolescents or even toddlers are more advanced than many older adults (say in the use of an iPad!), such capacities are outside the scope of our argument. We have in mind a kind of wisdom and self-reflectiveness that only comes with age and experience. Is it true that some adults lack such wisdom? Yes. But, it is much more likely that many teens and nearly all younger children are ill equipped to make decisions of such gravity.
Professor Nelson’s critique itself relies on a particular kind of arbitrary judgment. In contrast to age-arbitrariness, we are forced to wonder about all the different kinds of conditions that might ‘qualify’ a teen for euthanasia. Based on his example, this list would seem highly arbitrary. If we are reading his reply correctly, Professor Nelson seems to be saying that clinical conditions of merit should be left up to the teen and parents. This clinical arbitrariness seems to cover a lot of territory— probably a lot more than the definition of ‘child’— and ultimately ignores society’s interest in the life and health of minors in favor of subjective definitions about what counts as ‘unbearable’.
His argument seems also to compel us to reexamine the legitimacy of whether mental disorders should really be disqualifying regarding euthanasia. If unbearable suffering is ethically salient, why should it matter if a teen is suffering the pain of metastatic cancer or serious treatment-resistant depression?
Professor Nelson also suggests we are invoking the Doctrine of Double Effect when arguing the ethical permissibility of terminal sedation over pediatric active euthanasia. He rightly points out that many physicians in Belgium have administered terminal sedation with the intention to shorten life. If terminal sedation carried the same inevitable risk of an immediate death as is true for active euthanasia by injection of high-dose potassium chloride, intention of the administering physician would be highly relevant to ethical practice under the Doctrine of Double Effect. On the contrary, terminal sedation generally does not directly cause death, particularly if artificial nutrition and hydration are maintained.
Finally, we should also clarify that we are not saying children are not vulnerable to unbearable, unremitting suffering. Sadly they are. What we are saying is that there are remedies that are clinically appropriate and ethically safer than euthanasia.
-Dominic Sisti, Andrew Siegel, Arthur Caplan
Thank you for this provocative article. I think you left a few areas unexplored, especially if the young adult has not received full disclosure about their treatment plan during the course of their illness. Have they always consented to the treatments they have endured? Adults (health care professionals and parents/guardians) have to reflect on their own personal and faith perspectives. How much of the treatment is due to adults not being willing to “let go.” As a Christian pastor and health care chaplain, I often wondered how much of the baptismal covenant do we believe… in life and death we belong to God? Kids are fearful of disappointing their parents and doctors because they do not want to risk emotional abandonment if they say they do not want anymore treatments. Why don’t we offer hospice care to more children? That is the most compassionate kind of care-giving when many treatment options are no longer available.
Also, look at recent research done that dispels the myth that children are incapable of making life and death decisions (D.H. Granello, 2010 on Suicide). Fortunately suicide is rare in early childhood (5-9 year olds). But Raimbault, Normand and Mishara have found that almost all children have a mature concept of death by the age of 10. It is the adults often who have to accept and overcome their judgments about people making informed decisions. A less sensational title would be more helpful and give the topic more justice.
What a slippery slope we trod when physicians are legally allowed, even encouraged, to end a life not worth living. Once we physicians are licensed to kill, we will have lost the implicit covenant with our patients that directs us to protect life and do whatever is in our power to heal the sick, otherwise known as the Hippocratic oath. Reliving suffering is a large part of our mission as practitioners, and we should vigorously strive to accomplish that without killing the patient. Loving and caring for our patients compels us work diligently to alleviate depression, isolation, and loss of self worth. I remain adamantly opposed to PAS.
Messrs. Seigal, Sisti, and Caplan’s reply to my discussion of their JAMA essay is welcome, both for the opportunity to state my views with greater precision, as well as for added light it sheds on their position. My remarks aren’t a defense of euthanasia for any age group. They are focused on what I took to be the claim of the JAMA authors that Belgium’s extension of their permissive euthanasia policy to children was illegitimate because children, unlike adults, are not vulnerable to unbearable suffering that results from aggressive palliation, and that any unbearable suffering that they may suffer from terminal illness can be relieved otherwise than by euthanasia. This claim is implausible if “adult” is understood to include everyone over eighteen, and “child” everyone under eighteen; its translation into policy could not help but be arbitrary. Hence the invitation at the end of my piece to think about the moral significance of arbitrary denials of access to euthanasia, and here I renew that invitation to my colleagues.
I appreciate in particular Jana’s citations of literature concerning the point at which children tend to have developed a “mature concept of death.” In context of the present discussion, it would be interesting to investigate what is required for a person to have developed a defensible aversion to terminal sedation, and at what age the capacities are likely to be in place. The JAMA authors seem to suggest now that “a kind of wisdom and self-reflectiveness” seem required. That suggestion, of course, needs development and defense, but it’s a start. One possible consequence of removing age limits from euthanasia laws and replacing them with operationalized criteria for wisdom and self-reflection is a constriction, rather than expansion, of the class of people who are appropriate candidates for euthanasia
Dr. Wittingden’s concerns are worthy of the most careful consideration. I wonder whether he might think that the experience over the past several years in The Netherlands, and now more broadly in the Benelux countries, could be relevant to his worries about the loss of the “implied covenant” of which he writes. Have physicians and the publics they serve forged a new covenant in Holland? If so, is it problematic in any way that they’ve done so?
Professor Nelson,
Certainly we all agree that unbearable suffering is evil and demands empathy and vigorous treatment. If individuals are free to demand euthanasia from their physicians, an exercise of autonomy, is death truly beneficial to them? Only a divine power can truly determine that. The experience in the Netherlands is a demonstration of the slippery slope as many patients are involuntarily killed by health care providers who have decided that their lives are not worth living, PAS is fraught with the potential for such abuse.
I do not know if a new covenant between physicians and the public has been developed in the Netherlands. I do know that I would be afraid to be seriously ill if a citizen there.