Ending the Life of a Newborn: The Groningen Protocol
Lindemann, Hilde, Verkerk, Marian, The Hastings Center Report
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.
Since its publication in 2005, (1) the Groningen Protocol has been under fire both in the Netherlands and outside it. The purpose of the protocol is to set a standard of practice for doctors to responsibly end the lives of severely impaired newborns, but it also lays out procedures for reporting doctors' decisions to authorities. Doctors who end the life of a baby must report the death to the local medical examiner, who in turn reports it to both the district attorney and to a recently created review committee. (The procedure differs in this respect from the black-letter law governing voluntary euthanasia. There, the medical examiner sends the report only to the regional review committee, which alerts the district attorney only if it judges that the physician acted improperly.) The protocol was created by a committee of physicians and others at the University Medical Center Groningen in consultation with the Groningen district attorney and has been ratified by the National Association of Pediatricians, but it does not give physicians unassailable legal protection. Case law has so far protected physicians from prosecution as long as they act in accordance with the protocol, but no black-letter law exists in this area.
The protocol stands accused of various crimes: (1) it is aimed primarily at babies with spina bifida, many of whom could lead satisfactory lives; (2) (2) it fails to distinguish with clinical precision between babies whose prognosis of death is certain and those who could continue to live; (3) (3) it allows parents to commit infanticide as a means of escaping an unwanted burden of care; (4) (4) it lets doctors decide what is an acceptable quality of life; (5) (5) it lets doctors determine the morality of their own actions; (6) (6) it provides a purely procedural response to the problem of measuring subjective suffering; (7) (7) it condones infanticide rather than preventing spina bifida or promoting its early detection via fetal ultrasound, followed by abortion; (8) and (8) it offers an incoherent criterion for deciding whether to end an infant's life--it requires that the infant experience "hopeless and unbearable suffering," but neonates cannot suffer because they lack the ability to realize intentions, desires, and hopes for the future. (9)
Many of these claims rest on a serious misunderstanding and, together, they give a highly distorted picture of the protocol. In this paper we attempt to clear up these misunderstandings by several acts of translation: we render into English the Dutch words in which the protocol was written, but at the same time we try to convey to an English-speaking readership the relevant aspects of the Dutch cultural and social background that make those words intelligible. And then, because we want to make ethically intelligible the practice that the protocol is intended to guide, we engage in a further act of translation--first we explain the shared moral understandings that form the context in which Dutch physicians sometimes end the lives of severely impaired newborns, and then we identify the issues for which understandings have not, or have not yet, become shared. Through these translations we argue for the moral permissibility, in the Dutch context, of physician intervention to bring about the death of babies who fall within the category the protocol is meant to address.
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 …
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Publication information: Article title: Ending the Life of a Newborn: The Groningen Protocol. Contributors: Lindemann, Hilde - Author, Verkerk, Marian - Author. Journal title: The Hastings Center Report. Volume: 38. Issue: 1 Publication date: January-February 2008. Page number: 42+. © 1999 Hastings Center. COPYRIGHT 2008 Gale Group.
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