“Listen to me, listen to me well”. Listen to the child with a disease that cannot be cured, listen to the families living with this immense pain, listen to the specialists who have learned to manage the last years, or months of life, of the little patients. Listening (“Listen, really listen”) is the leitmotif of the “5th International Maruzza Congress on Pediatric Palliative Care”, an international event organized by the Maruzza Lefebvre D’Ovidio Onlus Foundation, which has been involved in the field of pain therapy and pediatric palliative care for minors. The appointment, postponed for two years due to the pandemic, brings together socio-health professionals from all over the world who care for children with incurable diseases of high and medium care complexity: over 20 million infants, children and adolescents in the world, while in Italy the incidence of the number of children eligible for pediatric palliative care is 35 – 54 minors per 100,000 inhabitants.
“We have chosen this theme because for a long time these children have remained unheard”, comments Franca Benini, Chair of the Congress and Head of the Veneto Regional Center for Pediatric Pain Therapy and Palliative Care, Hospital – University of Padua. The pediatric world has made great progress in therapies, in management, in survival, but it is undeniable that a part of small and very small patients continue to live in incurability. And we have always talked very little about them. As if – continues Benini – we were afraid to face this problem. And instead we must listen honestly, bearing in mind the reality of life, to find solutions ”.
At the Congress, in Rome from 25 to 29 May, socio-health professionals from all over the world will alternate. An opportunity to disseminate innovative approaches and expose cutting-edge technologies, present new international standards of care and propose specific ones for humanitarian crises. What, the latter, very current. “Imagining that a home-ventilated baby, a dying baby, also has to face a humanitarian crisis such as a global pandemic or war was an unacceptable thought for us. Instead, we found ourselves facing new dramatic situations. Here we will try to learn from those who have greater management skills ”, continues Benini.
Also because the first sick children have already arrived from Ukraine. Children who generally depend on machines to breathe, to eat or to monitor vital parameters, and therefore must be housed in Italian palliative care centers. Benini continues: “In addition to the disease, these children must also bear the weight of the situation that forced them to leave home, to change settings, habits, life. This amplifies the level of suffering. Usually they are alone or with their mothers – the fathers are not there, they have remained in Ukraine – and this prevents us from recreating the normality which is the ultimate goal of palliative care ”. For this reason, during the Congress, links with Ukraine are planned to provide clinical, methodological and concrete help to families who must also manage this problem.
The pandemic has also taken a toll on children with incurable diseases. Many support activities – think for example of physiotherapy, which puts the healthcare professional in contact with a patient at risk – have been suspended. “Physiotherapy is not only a clinical practice, but also a moment in which the patient can leave the house. He marks the days ”, remembers the expert. The school, the place where children meet with their peers, was also affected. If it is closed, the main contact of their social life is interrupted. Hospices, generally places with flexible hours, where grandparents or friends come to visit, where everyone eats together, continued to function even during the Covid emergency, but with different, more rigid rules: an important part of the activities that contribute the quality of life of the young patients was interrupted.
The international comparison, however, also serves to remind us how far Italy is ahead in this sector. “Italy has crossed the line: we have an excellent law (38 of 2010, which establishes the right of citizens to receive palliative care and pain therapy), we have answers to all the critical issues in this sector, both organizational than formative. Unfortunately – explains Benini – they are patchy answers. Some regions, such as Veneto, have done very well, others have done little “. In Italy, of the 35,000 minors diagnosed with incurable, only 5% enjoy the right that the law recognizes them to receive palliative care.
A profound gap can therefore be created between the law and its application. The same that is found when it comes to giving support to families. “When a family carries the burden of an incurable disease, it migrates, it goes to look elsewhere for a miraculous solution. But we all know that these are diseases without solution ”, underlines the expert. Thus families are uprooted from their context in search of a therapy that unfortunately does not exist. We must work, concludes Benini, so that these families live with their child, with their history, in the place where they are best: at their home. In some areas of Italy there is an important health and social support network, in others not at all. A heterogeneity and inequality in pediatric palliative care that must be addressed.