Between ethics and care. The end-of-life in Paediatric Intensive Care Units “open” to the families

Abstract

This articles explores some important issues related to the theme of the end-of-life in Paediatric Intensive Care Units which are “open” to family members of the hospitalized child. As the World Health Organization has highlighted in the document Integrating palliative care and symptom relief into paediatrics, there is a greater emotional burden for family members as well as for clinicians in the case of a severe and life threatening illness affecting a child. The presence of family members in PICUs can sometimes be perceived as an obstacle by medical staff, but experience – in the PICU of the paediatric hospital of Ancona “G. Salesi”, especially considered in this article, as well as in other hospitals, as can be read in the existing literature – has shown that it is a positive practice, a good practice, even essential for the child in the last few days or hours of his/her life, and also for the parents who are able to assist the child, and to see that everything humanly possible has been done for their loved one by medical staff – this is crucial in order to avoid future guilt. Open PICUs should be considered and designed not only as places where children are provided with the highest level of medical care, but also as “ethical places”, where a well-trained staff displays virtuous attitudes and behaviours, doing everything humanly possible to provide relief from the symptoms and alleviate the suffering and pain, using the tools of narrative medicine and comfort care in the perspective of an ethics of compassion.