Deliberate termination of life of newborns with spina bifida

Abstract

I have been following the discussion on euthanasia in The Netherlands for some time and particularly so the last years when Verhagen et al. have published some articles about euthanasia on infants (http://www.europeanhospital.com, volume 14, issue 1/05) [1–3]. These articles on the ‘Groningen Protocol’ give rise to much concern because it appears that all the euthanized children had just a single birth defect: spina bifida complicated with hydrocephalus. Having read the text of the invited article of de Jong, I would like to contribute and highlight some general principles about this kind of decision-making and also clarify profound misunderstandings about what it means to live a life with spina bifida. It seems that about once in a few decades someone publishes a set of criteria that identify infants with congenital malformations that are better off dead. It is “in their best interest” that their lives are ended. Obviously, the infant has no say in this decision. In the Groningen protocol, the infant receives a lethal injection to end life. While this may seem more humane than Lorber’s protocol about selection for nontreatment and consequently sedating and starving the infant too death, the result is the same. Unfortunately, the design and execution is carried out by a physician. There are many problems with this protocol beyond violating the rights of an individual. This issue of “quality of life” is an important one. When this phrase appears in any decision process, especially if it involves limiting the rights of another, one should pause. Like Verhagen et al., Mr. Lorber devised a set of criteria that would predict the “quality of life” of infants born with spina bifida. Several studies clearly showed these criteria to be invalid. The only thing they predicted was who was going to starve to death. Unfortunately, many infants died before most centers rejected these criteria. For 35 years I have practiced pediatric neurosurgery at Children’s Memorial in Chicago, a large urban hospital. I have participated in the care of almost 500 infants born with spina bifida. At the present time, we are following-up 1,500 children and young adults with spina bifida. This experience has taught me that any attempt to predict the outcome for an individual infant is not only unwise but also often wrong. I have also learned that we professionals, especially physicians, are often poor judges of what represents a life of “quality”. We are part of the upper economic strata of society and live lives of intellect and comfort. What we perceive as poor quality may be very acceptable to others. Commonly, those promoting these protocols are obstetricians, intensive care doctors, or others with little knowledge of what life is like for individuals with spina bifida as adults [4]. Today, nearly 90% will survive into adulthood, most will graduate high school and many will attend college. Between 70% and 75% are likely to live independently. The remaining 25% to 30% will require some assistance but will live with dignity. Over the years, I have been asked to assist families that are faced with making a difficult decision about the initial treatment of their newborn with spina bifida. Often, the parents have already spoken with a physician less involved and less experienced in the care for babies and adults with spina bifida and often have been presented a too grim Childs Nerv Syst (2008) 24:33–34 DOI 10.1007/s00381-007-0490-7