Deliberate termination of life of newborns with spina bifida

Abstract

The decision to make medical treatment on newborns with severe pathologies represents one of the most controversial aspects of the current neonatal and pediatric medical practice because, in spite of medical progress in this field, it is not possible to gain always a complete recovery of these little patients. In this context, physicians as well as parents are worried about a possible prolongation of suffering without a real perspective of benefits. The de Jong article gives us another occasion to make a critical evaluation of the Dutch practice to deliberately terminate life of newborns with spina bifida according to the so-called Groningen Protocol, adopted by the Dutch Association of Paediatrics in 2005. The use of selection criteria to decide treatments, along with the Groningen Protocol, was anticipated in the 1970s by the so-called “Lorber selection criteria”, based on the concept of foreseen quality of life. However, the nature of such criteria is essentially psycho-social, and therefore they are not “sensu stricto” proper medical criteria. Moreover, the use of such criteria brought warring “errors” of evaluation as shown, for example, by the ethical debate in the USA on the Baby Jane Doe case, followed to the prospect physicians made about the future life of handicapped children. The interesting historical overview about the treatments of newborns with spina bifida presented by de Jong suggests to us that, although the selection criteria have been introduced since the 1970s, it is only recently that in Netherlands those criteria have been put into practice for an active termination of newborns with severe pathologies. Should we consider the novel decision to terminate life of these infants a medical “progress”, a human “advancement” in medicine? Should we consider such decision a medical progress instead of an active and devote caring of these patients? The Groningen Protocol states that the decision to terminate life of these fragile patients would be more “human” than letting them live. In our view, an effective medical human progress includes a sympathetic attitude towards the most fragile and needy, and it demands to take care of them, not to make an easier termination of life. In this case, the founding value of the medical act would be overwhelmed and, according to de Jong, a fundamental requirement for a civil sharing would be lost. The author underlines that the choice operated within the Groningen Protocol is in contrast with the recognition of the dignity inherent to humans and with the promise of a more incisive protection of the fundamental human rights that rise from that dignity. Such commitment belongs much more to the physician who makes a public promise that he will place the interests of his patients above his own interests [1]. Groningen Protocol is just one of the examples that show how in medical practice new ways of discrimination are gaining place. The progressive shift from the choice of not to treat to the decision of a deliberate termination of life of newborns with spina bifida, together with the arguments held to this aim, evidently shows how the problematical aspect cannot be sought in the “adequacy” (efficacy, burdensome) of the measures needed to preserve life, but it consists of the “adequacy” (utility, burdensome) of the life of the patient in terms of present and future quality of life. In other words, the question seems to be the existence of life in itself, but how is it possible to consider life as a problem which needs to be terminated? It is evident that the base of such perspective is a distortion of the concept of human dignity, together with an outrage to the essence of the medical profession. Childs Nerv Syst (2008) 24:37–38 DOI 10.1007/s00381-007-0482-7