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

What the Protocol Says

Eduard Verhagen and Pieter Sauer, the two pediatricians at the University Medical Center Groningen most intimately involved in developing and publicizing the protocol, have identified three categories of newborns for whom doctors must make end-of-life decisions.

Group 1 consists of newborns with no chance of survival. Typically, they have a fatal disease such as severe lung or kidney hypoplasia, and they are put on life support immediately after birth while their physicians determine the extent of the damage. While "in some cases they can be kept alive for a short period of time, . . . when the futility of the treatment is apparent, the ventilatory support is removed so that the child can die in the arms of the mother or father."[10] The decision to withhold or withdraw treatment in this group is, as Verhagen and Sauer correctly note, acceptable for physicians in Europe as well as in the United States. Indeed, once it is clear that the newborn has no chance for survival, to continue or even to start treatment would be medically irresponsible.

However, if the baby does not die immediately after life support is removed, the doctors could face a severe moral conflict. On the one hand, they are morally and legally bound to relieve suffering; on the other, they are bound to preserve and protect the infant's life. In the United States, doctors in the throes of this dilemma may not intervene to hasten the baby's death. In the Netherlands, however, the deliberate ending of a life is countenanced as morally and legally justified. Because infants belonging to group 1 cannot live very long no matter what treatment they receive, the decision about terminating their lives is only a decision about the time of dying, not about whether it is better for them to die. No quality-of-life judgments are involved.

Group 2 consists of infants who "may survive after a period of intensive treatment, but expectations regarding their future condition are very grim."[11] They include infants with severe brain abnormalities or extensive organ damage caused by lack of oxygen. The dilemma here is whether these infants are so badly off that they should be allowed to die. In the Netherlands and in most parts of Europe, doctors agree that not only survival but also the quality of the life is important in deciding whether to withhold or withdraw treatment. In the United Kingdom, the Nuffield Council on Bioethics recently wrote, "It would not be in the baby's best interests to insist on the imposition or continuance of treatment to prolong the life of the baby when doing so imposes an intolerable burden on him or her."[12] In the United States, too, there is a consensus regarding the permissibility of withholding or withdrawing life support for babies in this category.

In the Netherlands, however, if neither withholding nor withdrawing intensive treatment will result in a speedy death, the unbearable suffering of the infant is seen as a compelling reason for the doctor to end its life directly. In the United States this would count as an appalling breach of medical ethics, as it also would in the United Kingdom: the Nuffield Council makes very clear that "the active ending of neonatal life even when that life is 'intolerable' is rejected."[13] But in the Netherlands, the termination of these infants' lives has not caused much controversy. The decision for deliberately ending the life of a group 2 baby involves not only a question of when death should take place, as is the case for babies in group 1, but also a value judgment about the infant's quality of life: the baby is judged to be better off dead than forced to endure the only kind of life it can ever have.

While the termination of life for group 2 babies would cause an uproar in the United States, from the Dutch point of view the controversial group is group 3. This group comprises babies with an extremely poor prognosis "who do not depend on technology for physiologic stability and whose suffering is severe, sustained, and cannot be alleviated."[14] These are infants who are not and have not been dependent on intensive medical treatment and who, with proper care, can in some cases survive many years, even into adulthood. They have serious conditions that cannot be treated but cause terrible suffering, such as epidermolysis bullosa, which in severe cases produces large, painful, fluid-filled blisters and continual scarring that fuses the fingers and toes and leads to feeding and swallowing difficulties. Other severe conditions include progressive paralysis, complete lifelong dependency, and permanent inability to communicate in any way.

The Groningen Protocol is applicable to all three groups, but because there is a consensus in the Netherlands regarding the moral permissibility of ending the lives of babies in groups 1 and 2, critics have particularly attacked the protocol's application to babies in group 3. The protocol consists of two sections—one setting out the conditions necessary for euthanasia to be performed, and the other detailing the kinds of records that should be kept "to clarify the decision and facilitate assessment."[15] We translate it in its entirety (see sidebar).

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