Dossier: Neonatal Euthanasia

by Fides Dossier


This dossier on the many aspects of neonatal euthanasia, concludes with an interview with Professor Carlo Valerio Bellieni, head of the Neonatal Intensive Care Unit, Le Scotte University Policlinic, Sienna, and a member of the Pontifical Academy for Life.

Larger Work

Fides Dossier

Publisher & Date

Agenzia Fides, February 9, 2008



The child: "desired" and "undesired"

Prenatal diagnosis

Definition of neonatal euthanasia

The Groningen Protocol

Spina bifida

What happens in Belgium, Switzerland, France, United Kingdom, Italy.

"Quality of life"

What is at stake

Interview with Professor Carlo Valerio Bellieni, head of the Neonatal Intensive Care Unit, Le Scotte University Policlinic, Sienna, and a member of the Pontifical Academy for Life.

The child: "desired" or "undesired"

Vatican City (Agenzia Fides) — They call it modernity. One of its effects appears to touch the very understanding of the human being. The birth of a child appears in our advanced society to have lost its function of guaranteeing continuity of humankind in the temporal dimension. It would seem to correspond to a private event, the fulfilment of a desire.

As the French philosopher Marcel Gauchet explains so well in "L'enfant du désir," "Le Débat", 2004, since there exists "the desired child", its opposite, "the rejected child" must also exist.

Lucetta Scaraffia, Associate Professor of Contemporary History at La Sapienza University in Rome, Vice President of the Scienza & Vita Association, a member of the Italian Committee for Bio-ethics, writes in the introduction to an issue of the Scienza e Vita pamphlet, "Venire al mondo" (Coming into the world): "Abortion, even more than contraception, guarantees that only desired children are born at the desired time, and prenatal diagnosis serves also to eliminate children who are ill, imperfect, not as desired".

Prenatal diagnosis

"Prenatal diagnosis, which presents no moral objections if carried out in order to identify medical treatment which may be needed by the child in the womb, all too often becomes an opportunity for proposing and procuring an abortion. This is eugenic abortion, justified in public opinion on the basis of a mentality — mistakenly held to be consistent with the demands of "therapeutic interventions" — which accepts life only under certain conditions and rejects it when it is affected by any limitation, handicap or illness. Following this same logic, the point has been reached where the most basic care, even nourishment, is denied to babies born with serious handicaps or illnesses. The contemporary scene, moreover, is becoming even more alarming by reason of the proposals, advanced here and there, to justify even infanticide, following the same arguments used to justify the right to abortion. In this way, we revert to a state of barbarism which one hoped had been left behind forever".

This is paragraph 14 of John Paul II's encyclical Evangelium Vitae, dated 25 March 1995, which at paragraph 63, adds on the same issue: "(…) Special attention must be given to evaluating the morality of prenatal diagnostic techniques which enable the early detection of possible anomalies in the unborn child. In view of the complexity of these techniques, an accurate and systematic moral judgement is necessary. When they do not involve disproportionate risks for the child and the mother, and are meant to make possible early therapy or even to favour a serene and informed acceptance of the child not yet born, these techniques are morally licit. But since the possibilities of prenatal therapy are today still limited, it not infrequently happens that these techniques are used with a eugenic intention which accepts selective abortion in order to prevent the birth of children affected by various types of anomalies. Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of "normality" and physical well-being, thus opening the way to legitimising infanticide and euthanasia as well. And yet the courage and the serenity with which so many of our brothers and sisters suffering from serious disabilities lead their lives when they are shown acceptance and love bears eloquent witness to what gives authentic value to life, and makes it, even in difficult conditions, something precious for them and for others. The Church is close to those married couples who, with great anguish and suffering, willingly accept gravely handicapped children. She is also grateful to all those families which, through adoption, welcome children abandoned by their parents because of disabilities or illnesses".

The issue of prenatal diagnosis was addressed by Professor Carlo Valerio Bellieni, head of the Neonatal Intensive Care Unit, Le Scotte University Policlinic, Sienna, and a member of the Pontifical Academy for Life, in an article published by Zenit News Agency on Sunday 20 January 2008. "Prenatal diagnosis " includes tests for possible fetal diseases not due to genetic abnormalities (non genetic prenatal diagnosis), or due to genetic diseases (genetic prenatal diagnosis). The latter (one example is to check for conditions of down syndrome) is done directly (counting chromosomes on fetal cells — amniocentesis and chorionic villus sampling) indirectly (checking for factors indicating genetic disease risk — ultrasonography or testing the mother's blood).

Professor Bellieni, wondering what the correct attitude to prenatal genetic checking should be when expecting a child, affirms that four points should be taken into consideration. First of all its generalisation (in 2007 the president of the French Committee for Bio-Ethics, Didier Sicard, wrote: "The case of trisomy 18 and 21 (Down) (…) happened as if science had ceded to society the right to establish that the birth of certain children had become undesirable. And parents who desire the birth of these children are exposed not only to the pain of the handicap, but also to social cruelty due to the fact that they refused to accept the proposal made by science and sanctioned by law. In France generalisation of screening is certainly based on a proposal, but in practice it has become almost compulsory". Secondly, its limits: The Institute of Human Genetics, Saarland University, Homburg/Saar, Germany speaks, in this regard, of prenatal diagnosis consumerism. In 1989 the World Health Organisation (WHO) issued guidelines to safeguard prenatal privacy and suggested limiting parents' possibility to obtain excessive information with regard to the child: "Prenatal diagnosis is carried out only to provide parents and doctors with information on the health of the foetus. The use of prenatal diagnosis for paternity tests, except in the case of rape or incest, or for sex selection, except in the case of sex-related diseases, is unacceptable". "Today", says Bellieni, "there is prenatal checking for strabismus, or breast cancer (in adulthood); it is possible to check for, and to interrupt a pregnancy for Marfan syndrome (interrompere la gravidanza per la sindrome Marfan), not to mention abortion of unborn baby girls". The third point, is utility: prenatal genetic diagnosis is used for two reasons: for "peace of heart" (hoping there are no abnormalities and that the pregnancy will continue to go well); or in order to have an abortion if the Karyotype should prove to be undesirable. At the moment treatment before birth does not exist and knowing beforehand about a possible fetal disease does not mean it will be better treated than if it were known only at birth. Point four, the risk of losing the child following the procedure.

Having made these premises, Bellieni suggests, after weighing all the possible risks, "prenatal diagnosis", in view of treatment for the foetus or the mother. With regard to "genetic prenatal diagnosis", Bellieni affirms: "if it would improve treatment in the future for the child or the mother, it would be good and advisable, obviously assessing the dangers involved. Even in this case it would be necessary to make certain it is being used for treatment, since although the "indirect" method does not endanger the life of the child, there remains the problem of interfering in genetic privacy, there remains the problem, as the French Bio-Ethics Committee stated, of the necessity of some form of protection". Whereas "direct genetic prenatal diagnosis" must be weighed with the risk of losing the child. Mere curiosity cannot be a sufficient reason and even anxiety must be of such a nature as to justify the intervention. Bellieni underlines, lastly, that genetic diagnosis is not ethically neutral: "like all human actions it is a decision and decisions implicate a responsibility, all the more, decisions concerning life. This does not mean that it is wrong, but it should not become a form of child selection, or routine, habit or screening". Today this sort of testing is ever more frequent and in some countries a prevailing number of pregnant women undergo indirect genetic prenatal diagnosis. If we know that human life begins at the moment of conception and that a disabled person is a citizen like all the others, it is unacceptable to carry out genetic prenatal diagnosis in view of killing a foetus should it have characteristics which we refuse to accept; and it is just as ethically questionable to make genetic prenatal diagnosis a routine, in which all personal decision is excluded.

Recently, the President of the Pontifical Academy for Life, Archbishop Elio Sgreccia, told the Italian daily Il Foglio: "It is the duty of diagnosis to be truthful and not to produce fakes. Prenatal diagnosis can be ambiguous according to the intention of the families or clinicians who request and practice it. If the purpose is to reassure the mother, or provide a better welcome for the child to be born, such diagnosis is justifiable. But if its intent is to probe for abnormalities and eliminate the child, it becomes an unlawful selective act. The doctor is cooperating with evil. Today some think ideologically that this second hypothesis is compulsory, a necessary social fact. (…) In pre-implantation diagnosis its technical use is connected with eugenic selection. In my hometown I live near a couple with a lovely, intelligent child affected with spina bifida. Medicine should correct defects, not eliminate the unborn child. Then why not defective persons already born? A phenomenon even pre-Nazi, dating to pagan times and the Rupe Tarpea" (a hill in Rome from which traitors were hurled to their death).

Definition of neonatal euthanasia

Neonatal Euthanasia is any action or omission which aims to end the life of newborns on the basis of a very poor prognosis for life; a request for euthanasia can concern newborns suffering from specific pathologies (e.g. chromosomal abnormality) of which the prognosis, therefore, is not a consequence of treatment given. Laura Guerrini, Neonatologist at Pisa University says: "euthanasia can consist in both the withdrawal of ordinary treatment and the giving drugs, since it is our aim which gives the real significance to our action and if both these procedures aim to prevent the survival of the newborn, either of them is always an act of euthanasia". Quite another thing is to avoid or withdraw "futile therapy" "disproportionate, lacking any credible therapeutic prospect": avoiding such therapy "should always be considered not only lawful but indeed ethically right", while ensuring that "withdrawal of futile therapy is never an occasion or a pretext to stop all therapy."

The Groningen Protocol

In our Fides Dossier "the 5th Commandment: thou shall not kill — Euthanasia" dated 10 November 2007 [ ] (to which this Dossier refers), we mentioned the Groningen Protocol: ('Euthanasia in severely ill newborns', published in New England Medical Journal, 10 March 2005). In Holland in the 1980s guidelines, drafted by the Court of Rotterdam and checked by the Royal Dutch Medical Association, made a distinction between "death" as the cessation of physical life, and "the end" of worthy living condition. In 1986 the Hague Court of Appeal added to the guidelines, as reasons for "ending life", both psychological suffering and potential personality dysfunction. In 1993 Holland de-penalised euthanasia and in 2002 with the 'Euthanasia, the Termination of Life on Request and Assisted Suicide' (Review Procedures) Act, the Dutch parliament established that from the age of twelve a child may request euthanasia: patients between twelve and fifteen need the consent of parents or guardian. Sixteen and seventeen-year-olds have the right to decide for themselves, but the parents must be consulted. In 1992, the Royal Dutch Medical Association presented "Draft Norms for Infantile Euthanasia". In 1994 a Report on Euthanasia, said that only 3 of the 15 cases of paediatric euthanasia practised every year were registered. Leading Dutch paediatrician Zier Versluys, said in 1992 "euthanasia is now part of good medical practice in neonatology". In 1993 Liesbeth Rensman, Ministry of Justice spokesperson said "the government proposes to extend active medical intervention to end short lives without explicit consent". Dr Molenar, head of Sophia Paediatric Hospital's Neonatology Department, revealed that 24 of 500 more defective newborns had been either killed or left to die by the doctors: "The Dutch Paediatric Society adopts the practice of euthanasia on defective infants". A 1996 survey, published by the New England Journal of Medicine said 64 per cent of Dutch psychiatrists agreed with active euthanasia for patients with a mental illness.

About 31 per cent of Dutch paediatricians is said to have practised euthanasia at least once and in one fifth of the cases, even without parental consent. Moreover 60 per cent of the doctors said they were "proud" to be able "to end the life of a suffering child". In 2001, Dr Verhangen, after inviting the Magistrate to visit a Neonatal Intensive Care Unit, started collaboration which led to the formulation of the Groningen Protocol (2004). The question from which the Protocol would appear to originate was if it is right "to keep alive children with illnesses associated with acute persistent, suffering when the latter cannot be alleviated", on the grounds that a life of suffering which cannot be alleviated, can be considered one of the extreme conditions when, according to Dutch law, killing someone is no longer considered murder.

Infants and newborns for whom such end-of-life decisions could be made can be divided into three categories:

  1. infants with no chance of survival with severe underlying disease, (such as lung and kidney hypoplasia);
  2. infants who can survive beyond the period of intensive care, but with an extremely poor prognosis and a poor quality of life. (e.g . severe brain abnormalities or extensive organ damage caused by extreme hypoxemia
  3. infants with hopeless prognosis who experience what parents and medical experts deem to be unbearable suffering. Not dependent on intensive medical treatment, but for whom a very poor quality of life, associated with sustained suffering is predicted" (e.g. Spina bifida).

Suggested action varies according to the category. For category 1) "not to initiate or to withdraw life-prolonging treatment in newborns with no chance of survival"; category 2) "the aim of Intensive Care Treatment is not only survival of the infant, but also an acceptable quality of life" so "Forgoing or not initiating life-sustaining treatment in children in the second group is acceptable to these neonatologists if both the medical team and the parents are convinced that treatment is not in the best interest of the child because the outlook is extremely poor"; category 3) "All possible measures must be taken to alleviate severe pain and discomfort . . . When both the parents and the physicians are convinced that there is an extremely poor prognosis, they may concur that death would be more humane than continued life".

The Protocol devotes considerable space to the 'Procedure' to be followed, listing first of all "Requirements that must be fulfilled: diagnosis and prognosis must be certain. Hopelessness and unbearable suffering must be present. The diagnosis, prognosis, and unbearable suffering must be confirmed by at least one independent doctor. Both parents must give informed consent. The procedure must be performed in accordance with the accepted medical standard." Then the Protocol lists the "Considerations" which should prompt the decision (extremely poor quality of life in terms of functional disability, pain, discomfort, poor prognosis and hopelessness; predicted lack of self-sufficiency; predicted inability to communicate; expected hospital dependence; expected long life), underlining that "the burden of the other considerations is greater when the life expectancy is long in a patient who is suffering": this means that the possibility of a long life increases the probability of a decision for euthanasia. It then lists "Information" to be supplied to "support and explain the decision" the information includes diagnosis and prognosis, how the decision for euthanasia was reached, details of Consultation, the actual euthanasia procedure and lastly steps taken after death and how parents are supported and counselled. On coming to the end of the Protocol, one realises that its true purpose is to "Prevent police questioning": it states "After the decision has been made and the child has died, an outside legal body should determine whether the decision was justified and all necessary procedures have been followed."

Spina bifida

Several times, among the illnesses to which it calls attention, the Groningen Procol mentions spina bifida. This condition is part of a group of malformations constituted by incomplete closure of the neural tube (source: Ministero della Salute Italia). Spina bifida malformations fall into three categories: spina bifida occulta, spina bifida cystica (myelomeningocele), and meningocele. The most common location of the malformations is the lumbar and sacral areas of the spinal cord. Myelomeningocele is the most significant form and is that which leads to disability in most affected individuals. The terms spina bifida and myelomeningocele are usually used interchangeably. Spina bifida is one of the most common birth defects, with an average worldwide incidence of 0.6-2.5 cases per 1000 births, but certain populations have a significantly greater risk.

The clinical picture is marked by paraplegia and deformity of the lower limbs, various abnormalities of the spinal column, functional deficit of the muscles of the pelvic floor, the bladder and rectum with consequent faecal and urinary retention or incontinence. Many individuals with spina bifida will have an associated abnormality of the cerebellum, called the Arnold Chiari II malformation. In affected individuals the back portion of the brain is displaced from the back of the skull down into the upper neck. In approximately 90 percent of the people with myelomeningocele, hydrocephalus will also occur because the displaced cerebellum interferes with the normal flow of cerebrospinal fluid.

In recent years improved surgical methods, early diagnosis during pregnancy, improved neonatal assistance, reduced the mortality risk from 70% in the 1950s to 5% today. Myelomeningocele is still one of the most complex congenital malformations and therefore demands a multidisciplinary approach, involving various specialists, working closely together. It is important to underline that this team work has led to a marked reduction of mortality, preservation of brain functions in more than 80% of the children and satisfactory deambulation in 85% of the cases.

On 12 January 2008 the Italian daily Il Foglio, published in interview by Giulio Meotti with Belgian psychologist Pierre Mertens, president of the International Federation for Spina Bifida and Hydrocephalus, which aims to diffuse information and improve the quality of life of people with Spina Bifida and Hydrocephalus. Mertens' commitment originates from personal experience: "She will never live. It would be best to think about having another baby". This was the death sentence announced by doctors to Pierre and Mol Mertens when their first baby girl was born. Liesje came into the world with her spine "open", in medical jargon, spina bifida. Liesje lived eleven years. In Belgium 95 per cent of children with spina bifida are aborted, in Britain the figure is 98 per cent, in Holland the illness is a criteria for infantile euthanasia. "What they term 'quality of life' of the unborn child with a disability — Mertens told the Foglio — is the first abortionist argument. In recent decades great progress has been made in treatment of spina bifida: patients study, work, have children, grow old". In 2000 Mertens formed a group of persons with spina bifida. "Among those 270 — Mertens said — there were scientists and a former member of parliament, but there were also serious cases. The group formulated a resolution affirming that the disability with which they had lived for fifty years or more, was not a valid reason for abortion. For me, to end a life is a symptom of a world which thinks it can control everything, including birth and death". There are many in the world who "think they can control everything. Like the Australian born bio-ethicist of Princeton, Peter Singer, who says haemophiliac, Down or spina bifida infants should be left to die: "When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, — Singer writes — the total amount of happiness will be greater if the disabled infant is killed"; like Bob Edwards, "scientific father" of the first test tube baby (Louise Brown), who said "it will soon be an offence for parents to have a child with such a heavy burden of genetic disease"; like one famous Italian clinician, who wrote recently that medicine has the right to select unborn children with a malformation, "who will never survive".

What happens in Belgium, Switzerland, France, Great Britain, Italy

In Belgium, where assisted suicide is allowed, according to information issued in 2007, the deaths of newborns and children in the first year of life are preceded by an "end of life decision": this includes both giving lethal drugs (in 17 of the cases studied) and withdrawal of all treatment (86 cases), withdrawal motivated by 50% of the doctors with a precise intention to anticipate the death of the child. Moreover 79% of the doctors interviewed considered it a 'professional duty' to anticipate death in order to avoid useless suffering, 58% was in favour of legislation on euthanasia, the majority were in favour of giving lethal drugs in cases of predicted lack of life expectancy or predicted scarce 'quality of life' in future.

A revision of decisions made in an Intensive Care Unit in Switzerland (here too assisted suicide is allowed) showed that in the department, death was preceded by a "structured and documented medical decision" (wording similar to the Dutch protocol) reached with the involvement of the parents.

In Great Britain, the Sunday Times on 5 November 2006, said that the Royal College of Obstetricians and Gynaecologists had asked the Nuffield Council for guidelines whether to permit the euthanasia of the sickest babies. A few days later the Nuffield Council of Bioethics issued a report in which it advised doctors not to reanimate newborns born before 22 weeks of gestation, not to give intensive care to those born between 22 and 23 weeks of gestation (unless the parents request it and the doctors agree), to give intensive care to newborns of 24 and 25 weeks of gestation unless the parents and doctors agree there is no hope for survival, whereas it declared compulsory intensive care for children born after 25 weeks of gestation. In another article published in 2006 the same Institute said that decisions with regard to intensive care should be taken with transparency and it called for the diffusion of guidelines. For its part, the Church of England affirmed last year: there are 'strong proportionate reasons' for 'overriding the presupposition that life should be maintained'. 'There may be occasions where, for a Christian, compassion will override the "rule" that life should inevitably be preserved' said the Rt Rev Tom Butler, Bishop of Southwark. The letter published by The Observer continued "'it may in some circumstances be right to choose to withhold or withdraw treatment, knowing it will possibly, probably, or even certainly result in death' . . . 'Disproportionate treatment for the sake of prolonging life is an example of this,' wrote Bishop Butler who also gave economic reasons: "'The principle of justice inevitably means that the potential cost of treatment itself, the longer term costs of healthcare and education and opportunity cost in terms of saving other lives have to be considered.'"

In France, a recent survey revealed that, rather than guidelines or legal norms, French neonatologists think it more opportune for a decision to be made for each individual case, convinced that end of life decisions are part of the doctor's "professional responsibilities" which he must fulfil free of the pressure which could come from rigid norms. Some neonatologists (for example E. Gisquet, Agir en situation de choix incertain; les décisions d'arrêt de vie en réanimation néonatale. Acting in the face of uncertainty: the decision to stop life support in the case of neo-natal resuscitation. Santé publique 2005, volume 17, n°1: 25-34), think their role is to be "tutors" of society: and that their task is to "assess and decide which children it is right to restored" to it and to start the procedures which enable them to fulfil this "responsibility". They say "it is much more hazardous for a family to live with a seriously disabled child than . . . ". These clinicians would appear to prefer death to a grave disability.

In Italy, the Comitato Nazionale per la Bioetica (CNB) in a motion voted during a plenary session on 28 January 2005 on assistance to newborns and infants suffering from serious pathologies and disabilities and paediatric euthanasia, said this: ". . . The CNB is of the opinion that, except in cases of withdrawal of heroic treatment, any deliberate intervention to perform euthanasia on minors is bioethically and juridically unlawful. To be strongly condemned, euthanasia of newborns with a disability, even if the conditions are most serious, since the fact that the disability would undermine the child's 'quality of life', in no way ethically or juridically justifies the child's elimination . . . The CNB, after referring to its own documents, conclusions and arguments condemning the practice of euthanasia, underlines that in the case of paediatric euthanasia, it is obvious that newborns and infants cannot give any valid consent: they must therefore be guaranteed special and rigid protection; as vulnerable persons, they must be defended from all forms of undue and violent prevarication towards them which violate their right to life and health, even when, in the dramatic context of the pathology, the latter are hardly perceptible . . ."

"Quality of life"

Dr Laura Guerrini is of the opinion that it is fundamental to clarify the meaning of the term "quality of life", found in many statements on the issue. "All of us hope for a life of quality — says Dr Guerrini — and so as neonatologists we work with all our humanity and professional expertise to help our newborns to live 'well'. The trouble starts when attempts are made to 'measure' this quality, proposing even mathematical formulas, which have as prevailing emerging elements, assessment of costs and recovery of productive capacity; in a way this insinuates the idea that a person is valued not for self, but according to the 'calculations' made by others with regard to the person, calculations which reduce man to a social function denying him his dignity as a person. This clearly opens the way for all kinds of interpretations ranging from the most science fiction (once, but today much more real) presented by Philip Dick in his short story 'The pre-persons', in which personal dignity belongs to those children whose parents have paid a 'Desirability Card' (which can be revoked at any time), without which all are destined to the 'Abortion Clinic' to be 'put to sleep,' to the present day interpretation of P. Singer, who says that self-consciousness and desire are fundamental elements for saying that an individual is also a 'person' and it follows, as Singer adds that 'foetuses, the disabled, newborns, old people, who have no real consciousness are not persons. Some beings belonging to different species from ours are persons, certain humans are not. So it is worse to kill a chimpanzee than a gravely disabled human being" 19. It is no accident that the author has asked for "a period of twenty eight days after birth before an infant can be accepted with the same rights as the others".

What qualifies a person to assess another person's quality of life? Perhaps the fact that he or she is a doctor and as such, an expert? Is it possible to pass judgement on a person's quality of life on the basis of diagnosis alone? Who can decide? Dr Guerrini replies: "certainly we must retain our objective to help our patients live in the best possible way not forgetting that this presupposes existence in life to be achieved by means of proportionate and appropriate care and in the conviction that this is a right for every person, without discrimination or abandonment. What is more the newborns must be inserted into the family context to which they belong and we must ensure that our task does not end with Intensive Care, but is able to continue through a local network after the infants have been discharged. I believe it is an integral part of the quality of life of our newborns for us to make sure the families do not feel they are left alone, abandoned to their destiny, but instead receive 'social solidarity' able to remove some of the clouds from that 'when we are gone' time, which causes them so much anxiety".

The role of parents in Neonatal Intensive Care is of fundamental importance. When a diagnosis is announced to them "For the parents this is a sudden, painful reawakening from of dream — says Dr Guerrini — The baby they 'dreamed of' is no longer: instead there is a real child with its problems. The parents have to relinquish their dream and face up to reality; they have to fall in love with a child who, with his disability, appears to have shattered their plans and dreams. Once the initial dismay is over, all the parents want is to be parents, to be with their child, to caress it, speak to it, and if possible care for it to the best of their ability". Of equal importance is palliative care, which helps in dramatic situations. It is fundamental to rediscover the purpose of medicine, which is not to decide which lives are worth living. "The doctor — Dr Guerrini says — offers himself to the patient in a frame of mind which obliges him to give the unfortunate patient whom he is unable to cure, a maximum possibility of life, in other words, to continue to honour the human person in the patient. However this is only possible if we are able to see our patients from an integral point of view which respects all the human dimensions (physical, psychic, spiritual) since this is only way to move the barrycentre from appearing to being and to acknowledge the immeasurable value of the human person as such, regardless of the functions is he or she able to exercise".

What is at stake

In December 2006, the Archbishop of Bologna, Cardinal Carlo Caffarra, speaking at a Conference promoted by the Department for Mother, Child and Adolescent Health of the Bologna University Hospital, said among other things: "Justification of neonatal euthanasia and/or selective intensive care is the prediction of serious biologically defective human life and therefore a life of profound suffering. Since obviously the human persons concerned are totally unable to elaborate any concept of good life, on the basis of which to deduce a judgement of sense/senselessness of one's life, another person elaborates this judgement on the basis of the hypothesis that — were he or she able to think — the newborn would agree. A decision is made to end the life of another person presuming that the person would in future share the same understanding of a good life as the person who ends the life of another". In the Cardinal's opinion, to legitimate this justification and therefore legitimate selective intensive care, would infer a grave vulnus on the concepts of autonomy and equality. "Autonomy means that each person has the right to live according to his or her own understanding of a good life. The sense/senselessness of the life of any single person cannot be decided by another according to the latter's own standards of happiness/unhappiness. Autonomy means first of all indisposition of [the life] any person for another person, and therefore impossibility to impose one's own judgement — according to criteria sense/senselessness — on another with regard to how he or she should life".

Considering what is a stake from another point of view, the Archbishop of Bologna reflected, on the same occasion, on the fact that — as H. Arendt affirms — "the birth of a child represents not simply another story of life, but rather a new story of life. For this to happen the person must be protected in his or her natural beginning from any intervention to predetermine how his or her story shall continue. A non-available natural destiny which precedes, so to say, our biographical past would appear to be an essential element of consciousness of our freedom (J. Habermas, Il futuro della natura umana. I rischi di una genetica naturale, Biblioteca Einaudi, Turin 2002, pag. 61). The justification of neonatal euthanasia aims to confer on some un jus necis et vitae over others on the basis of their own moral judgement with regard to the natural destiny of a birth". The wound to equality, in Cardinal Caffarra's opinion, needs no demonstration since "some people have the right to pass a death sentence on the basis of their own understanding of the sense or senselessness of a life. A person is considered worth keeping alive or not worth keeping alive on the basis of criteria established by others, on which he or she has no say".

In his closing considerations the Archbishop of Bologna dwelt on what was written in 2002 by Michael Gross, concerning a general consensus to neonatal homicide according to the opinion of the parent in the interests of the newborn broadly defined to consider the physical damage as well as social, psychological and financial damage to others [cit. da Zenit News Agenzia. Il mondo visto da Roma;; published: 2006-11-10]. The right to live therefore must be balanced with the interests of a third party and there is a possibility that the balance may fall in favour of the third party. "This position — said Cardinal Caffarra — is an unequivocal sign of the tyranny of utilitarianism in the doctrine and in the regulation of associated life. According to this vision the common good, that is the good of associated life, should be seen as the summation of the good of individuals. I can annul an addend and not change the result, as long as this proportionally increases the others. Out of metaphor: the interests of one person can be diminished or annulled as long as the interest of a greater number of persons remains or increases. What is the innate error in this vision? It reduces man to a social function; it denies his character and dignity as a person. I will explain with another arithmetic metaphor. In multiplication if I annul a factor the result is zero even if I increase the other factors endlessly. A person, every person is unique, non replaceable, non interchangeable. To refuse a person, even one person, is to inflict serious damage on the common good of the human community as such. Each of us is the guardian of the personal dignity of every other person, contrary to the opinion of Cain. Unless the moral and legal profile of associated life is rooted in an ontology of the person which reason can discover, the scale of values we claim to establish will always be changed by those in power: a value placed high up will be lowered and vice versa. This was the lesson of Socrates in the platonic Gorgias. The counter evidence is that at the bottom of the scale there are always the rights of the most vulnerable. They condemn to death a newborn child".

Interview with Prof. Carlo Valerio Bellieni

Professor Carlo Valerio Bellieni is head of the Neonatal Intensive Care Unit at Le Scotte University Policlinic in Sienna and a member of the Pontifical Academy for Life.

A new DNA, and so a new life is formed when there is an encounter between a spermatozoon and an egg cell. Some are of the opinion that man can do as he pleases with this 'clot of cells', this 'product of conception'. Even the choice of words treats the unborn child, the newborn and then the infant as an 'object' rather than a person?

I am convinced that we should ban the use of the word foetus from our everyday language. Because it is only since the 20th century that this word has been used to describe the unborn child. The ancient Romans used the word "foetus" for fruits, for progeny, not for the unborn child which was simply termed "puer". Furthermore, foetus is a deliberately neutral word, with no masculine or feminine: that is without the sexual character which is the fundamental trait of our organism; why? Could it be to connote the foetus as something different from us. And then its assonance with ill-chosen words such as "defect" or "fetor" gives the word a resonance of squalor; neither does it help to understand that inside the uterus there is a who child sucks its thumb, feels pain, remembers. How much every woman would benefit by knowing this humanity, both for the progress scientific to which it gives rise, and for the capacity of company she would draw from a prenatal encounter with this new member of the family.

Would it be right to say that prenatal diagnosis is becoming an eugenic practice, a means of eliminating children who are ill or imperfect? Are you aware of information at the European or world level which would support this statement?

This defiant match is the work of the ultra secular president of the Consultative Committee of Bioethics of the French Republic. It is necessary to distinguish between non genetic and genetic prenatal diagnosis: the first usually aims to identify fetal illnesses which can be treated; an example of the second is testing for chromosomal abnormalities such as the down syndrome, and others for which there is no prenatal treatment. Prenatal genetic diagnosis is performed either with direct means (amniocentesis or chorionic villus sampling) or indirect means (measuring the fetal nape or sampling the mother's blood). In France and in Italy we see a continual increase in amniocentesis examinations: in France there is concern because 15% of pregnant mothers have recourse to this examination. In some regions of Italy the percentage is higher. A recent survey among lay bio-ethicists in Britain showed that the majority declared generalised prenatal screening for the down syndrome non ethical, but indirect prenatal genetic diagnosis is being extended to the majority of the population. The concern is not eugenics, but rather the worrying use of prenatal genetic diagnosis screening, as if every child about to be born needs a conformity "sticker".

Active and passive neonatal euthanasia. Life 'worth living', or 'not worth living'. 'Quality of life.' Pain, suffering. From the medical scientific point of view, how should these issues be tackled?

Euthanasia is only the tip of the iceberg, but the trouble is that people are becoming more and more accustomed to the idea that life must have a certain quality to be worth living. This stems from a narrow vision of one's own life, due, I believe, to personal solitude. And at the root of the request to introduce euthanasia into legislation there is nothing romantic ("sweet death" . . .), instead there is the terrifying fear of being rejected, being left alone . . . and, in view of the abandonment which awaits us when we are no longer self-sufficient, to prepare for self and for others the only solution we are able to conceive, unless we have hope founded on persons, experiences, and the certainty of a God who loves us even when we are no longer valid, or productive. Science should not support these shortcuts, which on top of everything thwart research…its task is to defeat depression in the clinical field and solitude in the social field.

What is the correct definition of neonatal euthanasia?

An act which, in the frequent absence of certainties, presumes that death is better than a life of disability. I say "presumes", because various studies show that the level of satisfaction for life does not vary for example in children with spina bifida or those born extremely prematurely, compared with the general population. Care must be taken not to focus all our attention on active euthanasia, since for passive euthanasia (withdrawal of treatment not because of predicted death but because of predicted disability) the moral judgement is identical.

Some say that one of the effects of 'modernity' appears to touch man's very understanding of the human being. The birth of a child would appear to have lost, in advanced societies, its function as a guarantee of the continuity, in the temporal dimension, of humankind. Do you agree?

In the hearts of mothers awareness of this function is intact. But there is a growing social imposition that a child should be experienced as "right", as a "product". And those women who in their hearts long not just for one but for many pregnancies, and early in life, and to delight in the child's presence even before it is born, to love it even if it is ill, are forced by social pressure to have one child only, late in life, and to accept it only if it is 'perfect'. The challenge is to make space for these hearts stifled by the media and social convention.

© FIDES Service

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