Tag: pediatric euthanasia

Killing Children in Belgium

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

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.

jim-nelsonJames Lindemann Nelson, PhD, is a Professor of Philosophy in the College of Arts and Letters at Michigan State University.

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Considerations for Minors and Euthanasia Laws

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Hannah Giunta

While euthanasia has been legal in Belgium since 2002, the government recently began considering changes to existing laws that would guarantee a legal right to die for minors as young as 12 (Blake 2012). This policy change has generated a great deal of controversy, particularly in light of several troubling cases that have recently been made public. No matter what their personal beliefs about euthanasia, bioethicists, health care professionals, those involved in public policy, activists, and all citizens with any vested interest need to carefully examine the ethical implications of various policy changes by asking themselves reflective, critical questions. So, in this blog post, I hope to get readers thinking about the issue by posing four such critical questions that I believe we should consider when analyzing the right to euthanasia for minors.

Question 1: Are minors developmentally capable of making decisions about euthanasia?

There is a general consensus that medical decisions should only be made by competent patients who have the ability to understand the implications of their actions. While scientists once believed that the teenage brain was nearly fully developed, recent evidence suggests that the frontal lobes, the areas of the brain responsible for critical thinking and predicting consequences, are still not connected in the adolescent brain (Knox 2010). The fact that teenagers’ brains are not fully developed may make it difficult for them to accurately understand what life with a significant medical condition entails. They may also have difficulty realizing the gravity and finality of choosing to die. Although no one wants to deny a teenager’s lived experience with her disease, it would be just as unfair to ask her to make decisions she cannot reasonably be expected to make. Thus, we need more information about how teenagers actually make these types of decisions when thinking about the ethics of euthanasia in this population.

Question 2: What effect will this have on families?

Though they are preparing for independent life, teenagers are still integral members of the family unit. Any policy that affects one member of the family unit affects the entire unit. Allowing minors to choose euthanasia fundamentally changes the relationship they have with their parents and the relationship parents have with medical providers. If minors can choose to die when confronted with a serious illness, questions arise about what other decisions they should be allowed to make independently, and these questions force everyone to consider what role the family should play in these minors’ lives. Will families be pressured to choose euthanasia if their child requests it in order to avoid a legal battle? Will parents and other family members still have opportunities to say goodbye to their child in meaningful ways? The medical establishment is inordinately powerful, and it is important to consider how shifting end-of-life decision-making away from families will impact their ability to participate in their children’s care.

Question 3: How will the law be implemented?

Belgium’s euthanasia laws are designed with safeguards to insure only patients who are intractably ill can choose death. Patients requesting euthanasia are supposed to be suffering from extreme, incurable pain and make repeated, informed requests to end their lives in writing. Doctors must provide patients with information about their prognosis and any benefits they might derive from alternative treatments, including palliative care. Physicians are required to keep detailed records and report all instances of euthanasia to a national commission that can cooperate with law enforcement if it appears to have been inappropriate (Cohen-Almagor 2009). But, the law’s implementation has allowed physicians to be primarily independent decision-makers about euthanasia without significant regulatory oversight. Some health care providers believe that Belgium’s euthanasia laws are an important way of addressing such a taboo subject. Others report significant abuse of the law. For instance, in approximately 3% of cases, drugs are administered without the patient’s explicit consent. The lack of consensus about how best to implement euthanasia laws contributes to many ethical concerns about the practice. Any moves to expand the law should only be undertaken after a critical examination of how the current system functions.

Question 4: Given increasing concerns about the way initial euthanasia laws have developed over the past 10 years, what additional safeguards will be in place to protect minors?

Belgium’s euthanasia laws were originally designed only for patients with no hope of recovery. However, several more controversial cases have come to light. Deaf twin brothers were euthanized last year after they found out that they were going blind. The brothers had no terminal medical conditions but reported that they could not imagine life without being able to see each other. The brothers had not yet actually lost their vision and made the decision to die pre-emptively (Ortiz 2013). In another case, a young woman fighting an ongoing battle with anorexia nervosa exercised her right to euthanasia because she no longer wanted to live with intense mental suffering. The woman was sexually abused by her psychiatrist; her next psychiatrist, who verified she was competent to choose euthanasia, was a good friend of the initial doctor who perpetrated the abuse (Cook 2013). Other contentious practices have also become commonplace, including organ harvesting after euthanasia and the extension of euthanasia rights to prisoners serving long-term sentences. With all of these questionable practices, there is considerable concern about vulnerable individuals. Current safeguards appear to be few and far between, and minors could be even more vulnerable than mentally distraught adults. If minors are allowed to make such grave decisions for themselves, bioethicists must ensure that additional safeguards beyond the usual regulatory requirements are in place to prevent unscrupulous, coercive practices.

The preceding questions are only four of the ones we should be asking when evaluating euthanasia policies as applied to minors. Please feel free to contribute more to the discussion. I hope that we can have a rich conversation with one another over the next few weeks!

References

hannah-giunta-100Hannah Giunta is a fourth year DO-PhD student pursuing a PhD in Philosophy and Bioethics.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Friday, April 12. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.