It is interesting to contrast the sort of passive euthanasia of infants that is deemed acceptable in our sanctity-of-life culture with the active form that has been advocated in the Netherlands. The Groningen protocol is concerned with . . . unbearable and unrelievable suffering. Consider the case of Sanne, a Dutch baby girl who was born with a severe form of Hallopeau-Siemens syndrome, a rare skin disease. As reported earlier this year by Gregory Crouch in the Times, the baby Sanne's ''skin would literally come off if anyone touched her, leaving painful scar tissue in its place.'' With this condition, she was expected to live at most nine or 10 years before dying of skin cancer. Her parents asked that an end be put to her ordeal, but hospital officials, fearing criminal prosecution, refused. After six months of agony, Sanne finally died of pneumonia.
In a case like Sanne's, a new moral duty would seem to be germane: the duty to prevent suffering, especially futile suffering. That is what the Groningen protocol seeks to recognize. If the newborn's prognosis is hopeless and the pain both severe and unrelievable, it observes, the parents and physicians ''may concur that death would be more humane than continued life.'' The protocol aims to safeguard against ''unjustified'' euthanasia by offering a checklist of requirements, including informed consent of both parents, certain diagnosis, confirmation by at least one independent doctor and so on.
The debate over infant euthanasia is usually framed as a collision between two values: sanctity of life and quality of life. Judgments about the latter, of course, are notoriously subjective and can lead you down a slippery slope. But shifting the emphasis to suffering changes the terms of the debate. To keep alive an infant whose short life expectancy will be dominated by pain—pain that it can neither bear nor comprehend—is, it might be argued, to do that infant a continuous injury.
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