Parents of a sick child who is unable to recover “have the right to choose. It cannot be a law that imposes on them, for substantially economic reasons, that their child can no longer live “. Mariella said this. Enoc, president of the Bambino Gesù pediatric hospitalspeaking at the conference “The child with incurable disease. Bioethical reflections and palliative care” organized in Rome by the Accademia Nazionale dei Lincei and referring to the case of Alfie Evans, the 23-month-old English child suffering from an incurable neurodegenerative disease whose 28 April 2018 the respirator was ‘unplugged’ with the consent of the authorities but against the wishes of the parents.
“When I went to London for the Alfie case – said the president of the Child Jesus -, I heard the screams of the parents as the child was unplugged from the respirators. Inside me those screams remained. Parents have the right to choose for their children. . Without therapeutic persistence, because in these cases parents must be accompanied towards the most humane choice, but parents have the right to choose “.
For Mariella Enoc the issue of pediatric palliative care is “a priority” because “even when the disease is no longer curable, the person is certainly curable”. Taking care of the person, clarified the president of the Child Jesus, “does not mean accompanying death but creating a path that takes care of the child in all his needs and at the same time cares for his family. Brothers and sisters must also be taken into great consideration. , because they often suffer serious consequences “.
“I also hope – Enoc said in conclusion – that these children can then return home for a certain period of time, but it will depend on what we can really do with territorial medicine”. For Enoc “all this can trigger a virtuous process not only from a human point of view, but also from a scientific and medical point of view”.
“In Italy about 30 thousand children and young people affected by an incurable disease. These young patients have pathologies in which premature death is inevitable, but often it is not foreseeable when it will happen. They need palliative care” but “to date a share no higher than the 15% of eligible children have access to these treatments “. To turn the spotlight on this denied right was theNational Academy of the Lincei, during the conference. “Even children with incurable diseases have the right to be treated in the best possible way, just as their families must be supported in this difficult moment of their existence”, underlined Roberto Antonelli, president of the Accademia Nazionale dei Lincei, opening the meeting. “This conference – added Antonelli – represents a moment of study but also, and perhaps above all, an appeal to all political decision-makers to obtain improved care for the many children and their families”. Pediatric palliative care, explained Mario De Curtis, president of the Sip Bioethics Committee, “must be distinguished from those aimed at the adult patient precisely because of the different biological, psycho-relational, clinical, social, ethical and spiritual characteristics of the pediatric patient. “. The conference was an opportunity to remember that “although Law 38/2010 provided for the construction of at least one hospice for each region, so far only 8 have been built and 6 are in the process of being implemented. In all, 13 regions have so far activated the palliative care network provided for by the legislation “.
To guarantee pediatric palliative care “we need training”. However “we must not only think about the path of the doctor, but also that of numerous other professional figures who must necessarily assist the doctor in assisting the complexity of the child in need of palliative care and his family”. Annamaria said it Staiano, president of the Italian Society of Pediatrics (Sip), speaking at the conference “The child with incurable disease. Bioethical reflections and palliative care” organized in Rome by the National Academy of the Lincei in collaboration with the Sip. Staiano has launched “an appeal to politics and institutions to do more, in the interest not only of children and families but of the whole community. Because knowing that these children and their families are more serene is a goal that we must aim to reach everyone “. The president of the SIP then highlighted how some important steps have been taken in the field of palliative care, but how these have mainly concerned adults. “At the national level, palliative interventions aimed at minors are limited to isolated experiences”. According to Staiano “the fundamental principle of fairness obliges us to undertake every possible action to reproduce the positive path taken for adults and the elderly also for minors”.