Pediatric palliative care: a short live from the Venice Film Festival

Minors in need of pediatric palliative care are 22 million worldwide and 35,000 in Italy, of which 85% are affected by a non-oncological pathology, which can be neuromuscular, metabolic, genetic, respiratory, cardiological or malformative. However, all these pathologies require specific multi-specialist treatments (such as ventilation, tracheostomy, venous nutrition) and frequent hospitalizations.

L’World Health Organization defines pediatric palliative care (CPP) as the active global care of the body, mind and spirit of the child and which includes active support to the family. The CCPs do not intend to prolong or shorten the duration of life, and include perinatal palliative care (aimed at even severely preterm newborns). The objective of pediatric palliative care is to guarantee the quality of life of the sick child and his family, alleviate physical, psychological, emotional and spiritual suffering from diagnosis and throughout the course of the disease, up to the terminal phase of death and mourning. It is therefore not a topic to be tackled lightly, but one which indeed deserves to be known by a wider range of people to raise awareness.

For this the idea of ​​the Onlus The best possible lifefor years also involved in the construction of the new Center for pediatric palliative care in the Veneto region – Hospice in Padua, was the one to choose the cinema, and in particular the days of Venice Film Festivalto shine a light on this issue, which is fundamental for the health of many young people in the Veneto region and beyond.

The short, entitled Direct was filmed as if it were an Instagram live stream from Andrea’s mobile phone (not his real name), a 17-year-old boy suffering from a rare disease: the Ondine Syndrome (CCHS) (also known as congenital central alveolar hypoventilation), a condition due to a severe defect in the central control of breathing and autonomic nervous system dysfunction). Andrea resumes with the mobile phone the situation he finds himself living due to a malfunction of the machine that allows him to breathe at night and to stay alive. The story is based on a real story whose True protagonist, appears at the end.

Director Paul Borracetti, who in addition to having directed the short wrote the screenplay, underlines how «The choice to adopt, in the film, the point of view of a direct social media of the boy ‘protagonist’ of the emergency, was the natural evolution of the story , to make it more personal, intimate and even closer to the life of young patients in a hospice”. The voice that narrates the dramatic event experienced by Andrea in a light-hearted tone is that of Gregory Righetti, while mom is played – extraordinarily truthful and empathetic – by Marina Massironi.

says the Doctor Joseph Zaccaria, President The Best Life Possible Onlus «Although tiring and difficult, the theme of pediatric palliative care has become of crucial importance today: they are 35,000 the boys and girls affected by rare and incurable pathologies in Italy. To date the Pediatric hospices six are active in the country (Padua, Genoa, Turin, Milan, Naples, Potenza – Lauria), another five are in the implementation phase, but entire areas of the country and regions such as Trentino Alto Adige, Friuli Venezia Giulia, Sicily and Sardinia are lacking. In short, there is still a great one gap between the needs of assistance and care that are constantly growing and the places available. In Veneto alone there are at least 900 minors in need of pediatric palliative care, 250 are assisted every day by Pediatric hospice of Paduathe first active in Italy and still at the forefront of care and organization of assistance. The network of pediatric palliative care and the sensitivity towards this difficult problem need to be further strengthened. Because of this The best possible life Onlus launched the project and is actively supporting the creation of a new and larger Center for Pain Therapy and Pediatric Palliative Care in Padua, in order to improve the right of many boys and girls to their best possible life”.