Children without hope, with no possibility of future are often intubated, subjected to painful and useless treatments, which will not lead to salvation but to multiply the days of suffering. Children undergoing therapeutic fury “just to comply with the parents’ requests”, desperate at the idea of losing their child, unable to accept such an unthinkable, unnatural hypothesis, or because doctors fear to find themselves one day accused by relatives, suspected of not having done everything possible to save that baby.
In defense of the youngest, who have no words to decide or say their suffering, the National Bioethics Committee intervenes with a newly approved opinion. Complex pages that speak of the pain of children with no future, of desperate parents, of doctors engaged in the fight against evil. Difficult balances and sought to find an alliance, an agreement, mutual help in the interest of children, of those who cannot choose or defend themselves from pain or fury decided by adults for love or fear.
An important opinion because talking about the end of life of infants or children divides public opinion, as seen in recent months on the case of Charlie Gard, the English child affected by a rare genetic disease and artificially kept alive from birth. You hate Alfie Evans, a 23-month-old boy being treated in Liverpool for a very serious brain disease whose parents had opposed the detachment of the machines, authorized by the judges, asking uselessly to transfer him to the Bambin Gesù in Rome.
“Against young children with limited life expectancies,” fury “and” ineffective and disproportionate clinical pathways “, such as to cause” further suffering and a precarious and painful prolongation of life without further benefits, must be avoided “, writes Professor Lorenzo d’Avack, president of the National Bioethics Committee (Cnb) in the opinion just approved after long hearings of specialists, pediatricians, neonatologists who told, witnessed their experience in the ward, in the intensive care units.
The text of the opinion
Thus “as regards young children, it must be recognized that clinical practice is often practiced because almost instinctively, even at the request of parents, we are led to do everything possible to preserve their life, without considering the negative effects that this may have on the existence of the child in terms of results and further suffering. Other times, however, clinical persecution is practiced in a conscious way, as a defense against possible accusations of omission of rescue or active interruption of care or treatment. So these clinical practices are mainly provided not to ensure the patient’s health and good, but as a form of protection and guarantee of their medico-legal responsibilities related to the activity performed “, writes the Committee.
Given the situation, the Committee recommends that “the best interest of the child is the inspiring criterion in the situation and must be defined starting from the clinical condition, together with the consideration of pain and suffering and respect for his dignity, excluding any assessment in terms of economic costs. Doctors must not enter into ineffective and disproportionate clinical pathways only to comply with parental requests and / or to respond to defensive medicine criteria “.
He then asked to establish the clinical ethics committees in pediatric hospitals with a consultative and training role through a national law, so as to facilitate the evaluation of the complexity of these decisions and seek a mediation of emerging disputes between doctors and parents who could seek a second medical opinion. These ethics committees must be interdisciplinary, composed of pediatricians, specialists from the medical fields under analysis, nurses, and non-health figures such as bioethicists and biojurists.
In extreme cases, the Committee asks to provide for the use of judges if the disagreement between doctors and family members is irremediable, but also asks to create a nucleus of professionals capable of supporting parents on an emotional and practical level (social workers, psychologists, experts in bioethics, family associations, voluntary associations) and accompany them in the difficult path, given by the child’s disease conditions
Always thinking about the good of the little ones, the Cnb asks to guarantee pallliative, hospital and home care, in a homogeneous way throughout the country, “on this we are still very lacking, in many regions they are not there despite the law of 2010 and is a very good law “underlines Professor D’Avack.
The recommendations of the Committee thus ask to strengthen research on pain and suffering in children, and to prevent the child, even more so with a poor short-term prognosis, from being considered a mere object of experimentation and research by doctors. “Too strong the risk in the face of desperate cases turn to anyone, to sorcerers even if they have a grain of hope that science denies”, always remembering that in any case, “the prohibition of unreasonable obstinacy of the treatments” must not be translated ” in the abandonment of the child “who instead has the right to” homogeneous palliative care on the territory “.
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