By Carlo V. Bellieni
In an era awash with concern for civil guarantees, is it possible that science and medicine actually erode human rights? Difficult to believe, but that is exactly what is happening. And we refer not only to the devaluing of the life of a fetus, but to the systematic erosion of rights for those already born. It is sufficient to read the scientific literature to see how the rights of babies to medical care have been willingly reduced compared to those which adults enjoy.
A series of studies by Canadian Annie Javier demonstrate how given an equal prognosis, the percentage of doctors ready to provide life-saving treatment for a sick newborn is greatly inferior to those who would re-animate an adult with a similar prognosis. A study published in the Journal of the American Medical Association in 2000 shows that many European and American doctors, when called upon to re-animate a baby, take into consideration the burden that the child could become for the parents. Michael Gross concluded another study of four Western countries saying that, “there exists a general endorsement of neonaticide subject to a parent’s assessment of the newborn’s interest broadly defined to consider physical harm” as well as harm to third parties. (Bioethics, 2002)
As if this were not enough, in the latest issue of Pediatrics, it was explained that doctors in Canada and the United States take into account the age of the mother or the type of family at the moment of re-animating a newborn, giving preference to those conceived in vitro or those who have a mother who is a lawyer. The gravity of the situation is also demonstrated by the latest issue of the American Journal of Bioethics in which Dominic Wilkinson, a neonatologist and philosopher, explains that, “in some circumstances it is justifiable for parents and doctors to decide to allow a baby to die even if his life would deserve to be lived.”
Wilkinson’s assumption is that today, the decision to re-animate a newborn is made by weighing his future well-being with the burden that an eventual disability would cause him; and if the scale leans toward the latter, treatment is interrupted since the life in this case, “does not deserve to be lived.” It is a tragic and mercantile vision of life itself which assumes a value that can be considered unacceptable. Wilkinson goes on to explain that even if the scale leans moderately towards his future well-being—that is, even if “the life deserves to be lived,”—the parent or doctor can choose to suspend medical care.
This is a real and true erosion of rights: not negligence, but a real and scientific selection of subjects to whom rights are taken away in favor of others, so much so that Annie Javier entitled two of her studies: “The best-interest standard of the patient is not applied to newborns” (Pediatrics, 2004) and “Are newborns different from other patients?” (Theoretical Medicine and Bioethics, 2007).This tendency is not limited to newborns: in 1996, a major world study on dwarfism, in Archives de Pediatrie published a terrible article (“J’accuse! Does dwarfism still have a right to citizenship?") which speaks about the discrimination that is experienced by those of short stature. And what can we say when we read that people with a mental disability or with a severe physical handicap lose their right to be called, “persons”?
The article cited in the Journal of the American Medical Association demonstrates that a high percentage of doctors think that in cases of disability (physical or mental) death is preferable to life. It is no surprise, then, that in some countries in the case of the illness of senile dementia and patients who are unable to feed themselves, care is reduced (Annals of Internal Medicine, August 2002) or hydration is withheld and that people with mental disabilities have become “invisible” for the health care system. (Lancet, 2008)
But in the case of newborns, leaving the last word to the parents—who are often overcome with anxiety and certainly not in possession of scientific know-how—and tying re-animation to future disability, gives the idea of an extension of the abortion law after birth, with the difference that in the case of newborns, death is not directly provoked but medical care is simply suspended, with the same result. At a time in which lip-service is paid to the rights of infants but in reality is ready to archive those rights when this infancy doesn’t correspond to an ideal model or expectations.
In many countries, and significantly in those with a higher standard of living, protocol exists to not re-animate babies born with a possibility of survival—in some cases decidedly high—(Pediatrics, January 2006) for the residual possibility of death or of having a handicap. The acceptance of these protocols by medical operators is astounding: perhaps out of a misguided sense of solidarity with the parents, or due to an aversion, which borders on eugenics, towards disabilities. Nor are there indications that in countries where such protocols are in place hospitals dissociate themselves or medical staff object. It is seriously worrying that selective re-animation has come to be considered normal routine in clinical practice. In short, a banal custom.
Carlo V. Bellieni is an Italian neonatologist and a bioethicist. He serves as secretary of the Bioethics Committee of the Italian Pediatrics Society, and is a member of the Pontifical Academy for Life. He is also a member of the Ethical Board of the Siena University Hospital, where he works in the neonatal intensive therapy unit. Bellieni is the author of many clinical research papers in international scientific journals, including studies on electromagnetic emission from neonatal incubators and on pain in children, and has written several books in Italian, Spanish, French, and English on neonatal pain and bioethics. He is an editor of Osservatore Romano, the Vatican official newspaper.
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