Leaves a Mark reports that Dutch doctors are deciding whether and when to kill infants born with certain conditions. For the sake of clarity, I’ll blockquote from the NYT article Mark cites:

The Groningen Protocol, as the hospital’s guidelines have come to be known, would create a legal framework for permitting doctors to actively end the life of newborns deemed to be in similar pain from incurable disease or extreme deformities.

The guideline says euthanasia is acceptable when the child’s medical team and independent doctors agree the pain cannot be eased and there is no prospect for improvement, and when parents think it’s best.

Examples include extremely premature births, where children suffer brain damage from bleeding and convulsions; and diseases where a child could only survive on life support for the rest of its life, such as severe cases of spina bifida and epidermosis bullosa, a rare blistering illness.

While working with ethicists these past four years I have been keen to avoid issues of medical ethics, especially end-of-life issues—I simply don’t know enough about it. But I’m going to risk danger today and venture a few thoughts.

If you want to view positions on pediatric euthanasia as falling along a continnum, there would seem to be two positions at either exteme: the Vatican positions and the Peter Singer position.

In a caricature, the Vatican position says that human life is inviolable: you cannot take life because that is god’s job. Here, the infant born without a brain would need to be kept alive on life support as long as possible.

The Peter Singer position (again, in a caricature) says that it is perfectly acceptable to euthanize infants up until the age of two, because until that point they are not, developmentally speaking, fully human yet. So it would be perfectly acceptable here to euthanize an infant with spinal bifida regardless of its long-term chances for viability. It would be no different than euthanizing a dog.

Both of these positions seem fundamentally flawed. As CP helpfully pushed me to say in comment to an earlier post, different forms and stages of life deserve different forms and stages of respect. It seems to me that, unless you are the Pope, this is not a slippery slope. The tricky question here is what specifically constitutes “the form and stage of life” when it comes to human life. In other words, what range of variations are properly considered part of the category human being?

Asking this question at all may seem to some to be arrogant, and indeed it often has been. But it doesn’t have to be. At base, asking this question can demonstrate a responsible awareness of—and grappling with—the fact of being human.

The medical model of disability is arrogant and harmful. But that does not mean we need to accept a relativistic interpretation of the cultural model of disability. It’s okay to draw a line and say x condition is so severe that its sufferers are not meaninfully human. An infant born without a brain seems such a case. Spinal bifida or cerebral palsy—conditions which friends of mine have—do not seem such cases, any more than short-sightedness or homosexuality.

On the other hand, I’ve observed that hesitance to euthanize sometimes really comes from a desperate desire to avoid coming to terms with human finitude, particularly the human finitude of a loved one. It seems unacceptable to me to keep, say, that infant born without a brain alive on life support simply because its parents refuse to reconcile themselves to what fate has brought them. It seems that, after an appropriate grieving period, the parents become sentimental parasites of their child.

I’m not going to come to any resolution about this, so I’ll try to wrangle this final thought into something resembling a conclusion. It has always been the case that “we” have decided what range of variation fits within the category human being, and “we” have often (usually?) been entirely too narrow and self-serving about how we have gone about that. (Married white propertied males, anyone?) But there is no god to tell us how we should define that as an alternative. And certainly no abstract ideal, not one we can use beyond “thought exercises” and certainly none that we should grow sentimentally attached to. This makes our task no easier, but it is our task nonetheless.