Ending the Life of a Newborn: The Groningen Protocol

Hilde Lindemann; Marian Verkerk

The Hastings Center Report. 2008;38(1):42-51. 

In This Article

How the Protocol Is Misunderstood

While some of the criticisms that have been leveled against the protocol are based on genuine moral disagreements, others seem to rest on misinterpretations, mistranslations, or other misreadings. Criticisms of this kind can be readily deflected.

We begin with the confusion that seems to have arisen over the class of babies to whom the protocol is applicable. In this regard, the criticism that the protocol fails to distinguish with clinical precision between babies whose prognosis of death is certain and those who could continue to live misses its mark.[18] It is precisely those babies who could continue to live but whose lives would be wretched in the extreme who stand in most need of the interventions for which the protocol offers guidance. The whole point of the protocol is to help physicians end the lives of newborns who are so severely afflicted that neither their dying nor their living should be prolonged. That being the case, the pertinent distinction is not between babies who will die and those who could live, but between babies for whom life-ending decisions should be made and those for whom such decisions cannot be morally justified. In bringing within its compass babies who are in no danger of dying—and, indeed, with proper care could live to adulthood—the protocol is even more radical than its critics supposed.

Another misunderstanding regarding the relevant class of babies is that the protocol is aimed at babies with spina bifida. In fact, nowhere in the protocol is spina bifida represented as a condition associated with an utterly unacceptable quality of life.[19] In our view, Verhagen and Sauer are partly responsible for the confusion that has arisen over this point, because by invoking the twenty-two reported cases of physician aid-in-dying used to develop the protocol, all of which involved infants with spina bifida, they unintentionally created the impression that spina bifida per se is paradigmatic of babies for whom end-of-life decisions are made. It isn't. As dissenters quickly pointed out, many people with spina bifida enjoy their lives, and while "the variable spectrum of disabling conditions associated with spina bifida may cause burdens on parents and society at large," society has an obligation to shoulder that burden.[20] We agree, and we have no reason to doubt that the Groningen committee shares our view. To put it as plainly as possible, the protocol is not intended for disabled babies with even modest prospects for lives free of intense suffering. The mere presence of a disability is no more relevant to an end-of-life decision than is a sprained ankle.

We take seriously the social stigma that attaches to people with disability and the disgraceful history of medical mistreatment that is a particularly vicious manifestation of that stigma. As we see it, however, the Groningen Protocol guards against the abuse of people with disabilities because it sets out clear requirements for the condition—dire in the extreme—that a baby must be in before ending its life is permitted.

A further point can be made here. The supposedly morally superior alternative to the actions governed by the protocol, of promoting the detection of spina bifida in utero and aborting affected fetuses,[21] does not strike us as superior at all. Because there is a very broad range in the degree to which spina bifida disables people or requires painful treatment, and because a great many people who have the condition live perfectly satisfactory lives, we join disability activists who condemn the routine recommendation of abortions performed for no other reason than to prevent the birth of an affected baby.

A third criticism rests on a confusion over how the protocol operates. It is not, nor could it be, purely procedural.[22] The protocol is intended to make the decision-making process more transparent, but this does not at all mean that the decisions themselves can be arrived at by ticking off a procedural checklist. Determining whether a baby's suffering is intolerable, whether a diagnosis and prognosis are reliable, whether or to what degree a treatment might be efficacious, whether a mother and father are fully appraised of their baby's condition and what it means—all this requires a sophisticated knowledge of medicine, a good deal of experience, and above all, judgment. While the protocol serves to guide physicians' deliberations on these matters by itemizing what needs to be thought about and what needs to be done, it also performs what is perhaps an even more useful function: it allows doctors to be openly accountable for their decisions to all members of society.

The importance of this accountability cannot be overestimated because unlike malpractice-minded Americans, Dutch people by and large trust their doctors. The Netherlands is not a particularly litigious society, nor are its physicians as troubled by the pressures of big pharma, entrepreneurial conflicts of interest, and inequities in the health care delivery system that have eroded the doctor-patient relationship in the United States. But the trust between the Dutch people and their physicians does not exist merely in the absence of reasons for distrust; it is deliberately cultivated as a socially valuable good. Much about Dutch medical practice—house calls, adequate funding for mental health care, the fact that 30 percent of babies are delivered at home—helps maintain the confidence the Dutch public reposes in its doctors. The transparency of the process of reflection and action required by the Groningen Protocol serves as another mechanism for nurturing and strengthening this trust.

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