The Groningen Protocol, introduced in the Netherlands in 2005 and accompanied by revised guidelines published in a report commissioned by the Royal Dutch Medical Association in 2014, specifies conditions under which the lives of severely ill newborns may be deliberately ended. Its publication came four years after the Netherlands became the first nation to legalize the voluntary active euthanasia of adults, and the Netherlands remains the only country to offer a pathway to protecting physicians who might engage in deliberately ending (...) the life of a newborn. In this paper, I offer two lines of argument. The first is a positive argument for the Protocol, grounded in the good of the newborn as unanimously determined by those in a position to determine it. The second addresses the widely shared belief that the killing of newborns is morally prohibited, where I offer two arguments—one grounded in the fact that the kinds of cases the Protocol is meant to govern are very rare and highly unusual, and the other focused more broadly on the role of pre-theoretical beliefs in moral reasoning—meant to undermine the strong role that the critic of the Protocol affords this belief. I argue that, given this second line of argument, the beliefs underlying my positive argument for the Protocol are in fact more secure than the widely shared belief underlying the critic’s position. (shrink)

Several criticisms of the Groningen Protocol rest on misunderstandings about how it works or which babies it concerns. Some other objections—about quality‐of‐life judgments and parents' role in making decisions about their children—cannot be easily cleared away, but at least in the context of Dutch culture and medicine, the protocol is acceptable.

American bioethicists lack the theoretical resources to work in cross‐cultural settings. All we have are two approaches to ethics—principles vs. narratives—that are mostly at odds, and neither of which is up to the job. If moral principles are too abstract to be useful, and if stories cannot provide moral authority, then where do we find our moral norms?

In this paper, a personalist ethical perspective on end-of-life care of severely ill newborns is presented by posing two questions. (1) Is it ethically justified to decide not to start or to withdraw life-sustaining treatment in severely ill newborns? (2) Is it ethically justified, in exceptional cases, to actively terminate the life of severely ill newborns? Based on five values—respect for life and for the dignity of the human person, quality of life, respect for the process of dying, relational autonomy, (...) and justice—an ethical assessment is conducted that brings us answers to the two ethical questions. (1) Noninitiation or withdrawal of life-sustaining medical treatment in severely ill newborns is ethically acceptable, and might even be a moral duty, when initiation or continuation of medical treatment can be considered futile or even harmful. (2) However, according to the personalist approach, it is not ethically acceptable to actively terminate the life of a severely ill newborn. (shrink)

I offer a principled objection to arguments in favour of legalizing non-voluntary euthanasia on the basis of the principle of beneficence. The objection is that the status of death as a benefit to people who cannot formulate a desire to die is more problematic than pain management care. I ground this objection on epistemic and political arguments. Namely, I argue that death is relatively more unknowable, and the benefits it confers more subjectively debatable, than pain management. I am not primarily (...) referring to the claim that it is difficult to make comparisons between live and post-mortem states, but rather to the fact that it is epistemically and metaphysically problematic to impute a “life-worse-than-death” or a state of “suffering-calling-for-death” to people who cannot subjectively wish to die, as though this kind of suffering were a medically observable fact rather than a belief- and value-laden notion. On the contrary, people enduring similar causes of pain may have different experiences of suffering and views on how it affects the worthwhileness of their existence or the desirability of death or of continuing their lives. The projection of a “suffering-calling-for-death” onto infants or people with severe intellectual disabilities may not be indefensible, but it is more controversial than judging that pain management will improve their well-being from the perspective of beneficence. My argument also relies on our society’s liberal endeavour to avoid endorsing unverifiable beliefs about life and death or controversial conceptions of the good life. My goal is not to suggest we should not attend the suffering of cognitively disabled people. On the contrary, I only cast doubt on too quick an assumption that ending their lives is the best way of caring for them, when robust palliative treatments are available. Moreover, I express the concern that a lack of attention to distinctions between “pain-calling-for-relief” and “suffering-calling-for-death” may be based on ableist projections and assumptions. I conclude that it is imperative to continue research into the nature of pain and suffering experienced by individuals with mental or cognitive impairments preventing them from expressing autonomous wishes about the kind of treatment that would most benefit them. (shrink)