Academic journal article The Hastings Center Report

"Are Their Babies Different from Ours?" Dutch Culture and the Groningen Protocol

Academic journal article The Hastings Center Report

"Are Their Babies Different from Ours?" Dutch Culture and the Groningen Protocol

Article excerpt

To the Editor: We were very pleased at how well Hilde Lindemann and Marian Verkerk addressed the misunderstandings that have distorted perceptions of the Groningen Protocol ("Ending the Life of a Newborn: The Groningen Protocol," January-February 2008). The Groningen Protocol for newborn euthanasia was developed in 2001 in the Netherlands after fifteen years of open discussion among the medical profession and the public, and with the guidance of legal precedents.

We personally experienced the limitations of the prior regulations when we treated a newborn whose parents asked for euthanasia to relieve her suffering. In this case, which was described in detail in the New York Times (Gregory Crouch, "A Crusade Born of a Suffering Infant's Cry," March 19, 2005), the newborn suffered from a lethal disease that caused her skin to come off whenever it was touched, leaving extremely painful scar tissue. Pain medication seemed to provide no relief, but the parents' request was denied and the child was sent home. This case prompted us to find a way to improve the regulatory mechanism controlling pediatric end-of-life care.

The Groningen Protocol was developed to allow doctors who practice euthanasia to be accountable to all members of society for their end-of-life decisions. We felt that transparency in the end-of-life decision-making process regarding newborns would help to maintain the Dutch people's confidence in physicians, as Lindemann and Verkerk correctly note.

The publication of the protocol in 2005 has sparked a discussion in the Netherlands about the meaning of "unbearable suffering" in newborns and about the perceived thin line between palliative care with life-shortening effects and active euthanasia. The ongoing process of openly discussing and refining the protocol's criteria--which shows remarkable parallels with developments regarding euthanasia in competent patients--can be considered a hallmark of Dutch society and an important guard against abuse.

Recently, the multidisciplinary review committee for newborn euthanasia, installed in March 2007, announced that no euthanasia cases were reported in the Netherlands in the past year. This could mean that there were cases that were not reported, but it could also mean that there had been no cases at all. There are clear indications suggesting the latter. Cases reported before 2007 concerned severe congenital malformations--mainly extraordinary types of spina bifida and genetic diseases. Recent data from regional registries indicate that the number of babies born with spina bifida has dropped considerably, resulting in a similar decrease of extraordinary cases. This decrease may have been the result of increased use of folic acid by pregnant women. It may also be related to the improved technical possibilities for prenatal detection of severe and untreatable conditions. In the Netherlands, ultrasound screening for structural fetal anomalies in early pregnancy was previously unavailable to most pregnant women. New regulation providing access to early screening for all pregnant women became effective in January 2007. As a result, more women decide to have an abortion when severe congenital anomalies are found, and fewer babies are born with these anomalies.

Not all severe diseases can be detected by prenatal screening, and not all women will decide to abort if severe anomalies are found. It may, therefore, be reasonable to assume that a small number of children with severe cases will be born each year--nobody knows how many, but certainly less than the ten to fifteen cases per year previously estimated.

Prior to the Groningen Protocol, pediatricians in the Netherlands for many years requested a newborn euthanasia reporting procedure with a multidisciplinary review committee. We are confident that the establishment of this committee will encourage them to report their cases. But we also agree with Lindemann and Verkerk that the development of the protocol to a large extent reflects characteristics of Dutch society and may therefore not be easily transferable to other countries. …

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