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Card. Sgreccia: The 10 Critical Points on the affair of little Charlie Gard

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In these dramatic hours, we are witnessing, sore and powerless, the latest developments and the fatal outlines of the affair of little Charlie Gard, the 10-month-old English baby boy affected by mitochondrial encephalomyopathy. On the base of distinct judicial decrees issued by three different English Courts, and ultimately by the European Court of Human Rights, Charlie should be accompanied to death by means of detachment from the machine which ensures his mechanical ventilation, and the simultaneous interruption of the artificial nutrition and htdration, not before getting a state of deep sedation.

In the different degrees of judgment, the British Courts have reaffirmed that the process of general decay of Charlie's clinical condition and, with it, the progressive and unstoppable deterioration of the function of organs presiding vital functions, first of all the respiratory ones, induce to believe that any decision regarding further actions aimed to prolong such living conditions would be to judge unlawful, since not taken in the best interest of the baby, but rather fated to increase,in time and intensity, pain and suffering of the same. What's most surprising is that the very idea of ​​submitting Charlie to an experimental protocol of nucleoside therapies that is being developed in the United States, an idea repeatedly proposed by the parents, has been considered inadmissible, better yet "futile" by physicians consultants summoned by the judges. And this in the face of the need, considered impelling, of giving an immediate and definitive execution to the unanimous devices of the sentences pronounced so far.

It seems that everything has competed in the last six months to create a sort of "tanatological obstinacy" against little Charlie, a sort of competition between judges and doctors to ensure the quickest possible solution to his case, by silencing any parent's burst of hope, as well as any glimmer of light on the possibility of success of a therapy that, although experienced only on mice and for a strain of diseases different from the one suffered by the English infant, according to the same Professor responsible for experimentation ongoing in the US, questioned ad hoc by Charlie's parents, could, at least theoretically, bring benefits to his general health conditions. It is true that, after the authorization for the experimentation of Charlie's therapy was requested in last January, the epileptic encephalopathy of which he suffers had determined, through repeated crisis, further and serious brain damage; however, what we want to discuss here is rather, and always, the ability to decide when and how to put an end to the life of an helpless human being. To this end, it seems appropriate to consider some critical points that emerge from the overall consideration of this affair, which is paradigmatic in many aspects.

1. Unhealable doesn't coincide with untreatable: a person suffering from an illness considered, at the present state of medicine, unhealable, is paradoxically the subject that more than any other has the right to seek and obtain care, constant attention and dedication: this is a cornerstone of the Ethics of care, which has as main recipients those who lay in a state of greater vulnerability, minority and weakness. And Charles represents paradigmically the example of who has the right to be assisted at every stage of his illness, because of the state of necessity, linked to age and illness, in that he's living. The "human" face of medicine manifests itself in the clinical practice of "taking care of" the life of the suffering and sick person.

2. The right to be continuously subjected, better said subject to, care and attentions by family members and others, resides in the dignity of which a human person, even if infant, sick and suffering, never ceases to be a holder. It is the substantial being of man, and his powers, that found this dignity, and not just their actual and fortuitous actualizations. This is what is meant by "purely ontological dignity of the person", astatus which leaves completely aside the ability to actively utilize the faculties that are exquisitely proper to a rational being: it is sufficient that they substist as feasible potentials of the same rational being.

3. The artificial nutrition and hydration by nose-gastric tube, under no circumstances can be regarded as a therapy. It is not a therapy on the grounds of the artificiality of the medium used to administer it, since neither is considered a therapy to give milk to the baby by means of a baby's bottle. It is not a therapy on the grounds of the processes by which these foods are produced, since milk powder is not considered a therapy, for example, althought its production is likewise affected by a long and fully mechanized industrial process. It is not a therapy on the grounds that the parenteral sac is prescribed by a medical specialist, since the same purchase of artificial milk is subordinated to a pediatric medical prescription. Water and food do not become medical aid for the mere fact that they are being administered artificially. Therefore, interrupting them is not the same of suspending a therapy, but is simply starving and letting die of thirst anyone who simply can not feed themself.

4. The key idea behind the informed consent has to do with the principle that the patient is never an anonymous individual to whom certain technical knowledge is applied, but a conscious and responsible subject who has to be summoned to share decisions in order to improve his/her own health, and possibly achieving a goal of healing and care. This implies the necessity of being involved in the decision-making processes that concern him, in a dialogic relationship aimed to avoid the condition of passively undergoing decisions and choices of others. The story of little Charlie, shows on the contrary how a dynamic of substantial disagreement between the medical team's decisions and the will of its parents has been emerged, as emblematically shows the last ban imposed on them, namely the possibility to bring home their son, in order to see him die in his house.

5. The prohibition to subject Charlie to experimental treatment, in any case, can not be justified by appealing to the state of suffering that he is currently experiencing. It is quite possible that experimental therapy would not produce the expected medical results, but it is equally true that Charlie's sufferings demand an integral and systematic palliative approach that could hypothetically accompany the experimentation itself. The preclusion to such therapies was motivated both in the name of the prognostic uselessness of the same - aspect whose alea falls within the parameters of uncertainty that are absolutely and ordinarily proper to any experimental therapy - and with the need to spare him those sufferings that prolonging life in such a condition could have generated: so the remote perspective of leaving Charlie in life, or even prolonging his life by experimental therapy, has been deemed - a priori - as an impracticable perspective, in the name of the need to avoid further suffering, and this not by means of proper palliative solution, but by the induced death.

6. The child's best interest principle, that international Charters put at the center of the mechanisms for protecting children, and that the British Courts themselves have taken as key justification of their decisions, hardly implicates or legitimates any form of passive euthanasia such as the one which has been decided to practice on little Charlie. We believe that his best interest is to ensure a life as worthy as possible, by means of an appropriate analgesic strategy that will keep the pain under control, if the path to access the experimental protocol already in progress in the USA was to consider actually infeasible. Which is exactly what Charlie's parents have been asking till now.

7. The European Court of Human Rights has incredibly skated over the aspects pertaining to content listed so far, and seems to have gone beyond, assuming a merely proceduralistic posture in the name of the principle of the appreciation margin. If on the one hand, in its judgment of 28 June, has remarked that the decisions of the British National Courts did not integrate in any way an infringement of Articles 2, 6 and 8 of the European Convention on Human Rights, therefore confirming the formal correctness of their work, on the other hand, has believed not to enter into the matter of the suspension of artificial nutrition and hydration and respiration, in the name of that sovereign autonomy of the Member States which would authorize them to regulate at their pleasure the ethically more complicated themes, as is the case of the feasibility of passive euthanasia on a newborn. And this in spite of the combined provisions of Articles 2 and 8 of the Convention clearly state the prohibition of deliberately depriving any  person of the fundamental good of life.

8. Anybody can see how, behind any aspect of this affair, although never mentioned, is hidden an idea of ​​efficiency in the management of health resources that induces to dispose of them in a way that can not but create a sly culture of waste. In a society that sees a growing phenomenon of medicalisation of diseases, along with an ever-increasing number of elderly people with the onset of degenerative diseases that they carry with them, and with the increasingly scarce resources allocated to the health system by national governments, tends to impose itself a business culture that makes efficiency at all costs its primary, vital, almost exclusive goal, thus enriching the number of those who, marginalized by reason of their life expectancy, are identified as waste to be eliminated, if possible.

9. More disturbing is the thoughtlessness with which is affirmed the paradigm of the life quality, or that cultural model that is inclined to ratify the non-dignity of some human existences, fully identifying and confusing them with the pathology they are carrying, or with the sufferings that accompany it. Never a sick person can be reduced to his illness, since every human being does not cease, for a single instant and in spite of his condition of illness and/or suffering, to be an incommensurable universe of meaning that deserves at every moment the attention of those who want unconditionally his/her good, and do not resign themselves to consider his/her existence as a B-class one for the only fact of being in need and suffering. An existence to which you would make a favor by deleting it definitively. And this is all the more true in the case of those who can not (longer) express who they are and what they feel, as for little Charlie.

10. In the transparency of schizophrenic attitudes implicated by these new cultural paradigms, one can grasp the ambivalence of those who, in claiming the total and indiscriminate freedom of access to euthanasia, based on the exclusive dominance of individual autonomy, denies at the same time that decision-making autonomy in other cases, such as the one under consideration, where it is believed that only doctors have title to decide, without involving any of the parents. The ambivalence of those who believe right that the doctors are in the condition of still giving a little time to their parents to allow them to work away the separation from their son, allowing them to stay in his company, and don't think instead to the needs of surrogate mothers, who are deprived of their children, shortly after birth, to support the desires of their "belly locators". The ambivalence of those who believe to protect the dignity of a subject's life, denying him the very life, which is the principal foundation not only of man's dignity, but of any other recognition that could be done in his favor. The ambivalence of those who fight for the judicial, institutional, and international defense of the rights of the weak, within the framework of democratic regimes, and at the same time accepts to see legalized or legitimate euthanasia, practiced even on the smallest, weakest and neediest.

+ Elio Sgreccia