At the meeting in UCBM, moderated by the Rector Calabrò, Melazzini, Tambone, Binetti and Gigli took part
23 May 2018 - It was a very special 'lesson' that took place this morning, in the Aula Magna of theUniversità Campus Bio-Medico di Roma: at the centre, in fact, the experience and the legacy of doubts and reflections that two children have delivered to world public opinion. Alfie Evans and Charlie Gard, their lives, their illnesses and the controversial outcome they encountered: these were the starting points for reflecting together with some experts on the limits – if any – to the 'right to life' of a minor affected by an incurable pathologystarting from a point of view “eminently secular”, as specified by the Rector of the University, Raffaele Calabrò.
"Why don't we try to break down that barrier and cultural concept of using the term 'incurable' as a synonym for 'incurable' - underlines Mario Melazzini, Director General of the Italian Medicines Agency (AIFA) – which determines a different 'gaze' with respect to the sick person and his life path”. Melazzini, who experiences ALS firsthand, referred in his speech to "all those people who witness daily life with the disease". “I am thinking – reflects the director of AIFA – of children suffering from pathologies similar to those of little Alfie, without specific therapies”. Stories linked by "a special 'fil rouge': hope", specifies Melazzini. Who adds: "We must work concretely on the recognition of the dignity of the existence of every human being who must be the starting point and reference of a society that defends the value of equality and is committed to ensuring that illness and disability are not or become criteria of social discrimination and marginalization”.
A task that in the case of doctors, according to the AIFA DG, goes beyond "the elimination of biological damage", for which "the independence and autonomy of the doctor, who is a citizen at the service of other citizens, should guarantee that the requests for care and the choices of patients' values are accepted. It cannot and must not be a question of costs and the bankruptcy choices of the English healthcare system are proof of this. Life is a matter of looks and hope: what you think is not possible today, who knows tomorrow…”.
Beside him, a little less than a month after the death of little Alfie, she also reconsidered the painful story Vittoradolfo Tambone, Professor of Bioethics at theUniversità Campus Bio-Medico di Roma: "The lesson of Alfie and Charlie - explains Tambone - is important for us from at least three points of view: firstly, it is necessary that doctors are increasingly able to establish a real relationship of cooperation with families without reaching what is, for one reason or another, a failure of the therapeutic alliance; moreover, the cases of Alfie and Charlie seem to fulfill Michel De Foucault's prophecy when he envisaged the advent of a state power with the right of life and death over the citizen: this seems to me to suggest that Bioethics is ever more important for building a Biopolitics respectful of human life; finally, it is difficult from a scientific point of view to accept the statements of the English judge regarding 'the best interest' of Alfie and Charlie because giving death cannot be considered a scientific act, given that we have no available evidence regarding the effects of the act itself : such a decision is rooted in an act of faith, 'after death the child will be better or worse' and therefore it is an option foreign to medical science”.
The Senator Paola Binetti, Full Professor of History of Medicine at UCBM, to open his speech: “Primam non nocere, deinde benefacere” said Binetti, specifying that “this is the ancient bioethical principle that should be re-proposed in the delicate events concerning defenseless children and their families”. According to the parliamentarian "on the one hand, there is a need to distinguish between therapeutic obstinacy and therapeutic abandonment in order to evaluate the effective correctness of the decisions taken by doctors with the approval of the judges, even if it is never legitimate to proceed with a massive suspension treatments, including life-saving ones, which at least for palliative purposes should always be maintained. On the other hand, there is the need to rethink the role of parents in taking charge of their children: their responsibility and their right to take the decisions that concern them when they are minors”. With explicit reference to the Alfie case, Binetti highlights how "continuing breathing, nutrition and hydration would not have caused any damage to the child, even taking into account that it was not easy to imagine how much good they would have actually done him".
Gian Luigi Gigli, Professor of Neurology at the University of Udine and parliamentarian, in his speech outlined the boundaries of Alfie's pathology, asking himself: “Could he be considered terminally ill? We are venturing into terrain that is unfortunately no longer so clear. For us, the terminally ill was the one who was dying ad horas, in days or if you prefer a few weeks. But the borders are expanding, fraying, to the point that some scientific societies in the anesthesiology field are proposing to extend the border of 'terminality' to two years. But if we wanted to extend the concept in this way, then each of us is terminally ill”.
Therefore, Gigli pointed out that "a judgment operation has been carried out on the quality of life, a rampant problem: this case, like that of Charlie Gard and the sensational cases of Eluana Englaro in Italy or Terry Schiavo in the USA have leapt to public attention because there was a conflict. But there are thousands of others in which, for example in the neonatology field, treatment could be renounced in the name of the patient's 'best interest'. We could ask ourselves: is there a better interest than living? If there is, who decides? Are there limits to parental authority? What has been consolidating in recent times is the fact that such limits do not exist only if the parents' decision is to let them die".
Gigli's last question, in reference to the Evans and Gard cases, was: "Could something similar happen in Italy?". The parliamentarian cited article 3 paragraph 5 of the law on informed consent and the DAT: "In the absence of treatment provisions or in the event that the legal representative refuses treatment to the patient and the doctor instead deems it appropriate and necessary, the decision is left to the judge. But if parents and doctors see it in the same way, treatment could already be suspended today, without any civil or criminal liability of the doctor". And he concludes by commenting on article 2, paragraph 2, of the law on the 'end of life': "In cases with an unfortunate short-term prognosis - and here we do not know how far these boundaries extend - the doctor must refrain from any unreasonable obstinacy in administering of the cures. Treatments, not just therapies. It would be the reversal of the Englaro affair: we are heading towards a tunnel in which self-determination is valid only if the choice is for death and not for life. If this type of culture passes, in Italy we will find ourselves with a condition of omissive euthanasia which risks, in the light of British experiences, also becoming voluntary euthanasia by omission".
To moderate the meeting the Rector of the University, Raffaele Calabrò: “We decided to organize this seminar on the cases of Alfie Evans and Charlie Gard to explore, with the contribution of international experts, the various ethical, juridical, medical, social and deontological aspects that the story arouses. Our goal, in fact, is to train students who, in addition to technical skills, also know how to develop that dimension of humanity and conscience that the medical and healthcare profession requires in order to always be close to the patient in every moment and situation".
