I vissuti dello staff e dei volontari che assistono pazienti pediatrici terminali: aspetti etici, diamoci e metodologici.

Terminal sedation is among the clinical practices in palliative care of children dying from cancer. Despite a vast effort in the scientific community, the development of guidelines for children and their adaptation to the specific condition of adolescent patients, is still judged to be incomplete and characterized by many unresolved issues. Terminal sedation is considered by the staff among the most distressing procedures due to the very high level of emotional involvement and due to the complexity of the moral implications that are raised. In order to explore this complexity we designed a phenomenologic-hermeneutic study in which each member of the nursing staff of the Pediatric Onco-Hematology Ward of the University of Padua, Italy, and the Oncology Ward and Home Assistance Module of the Giannetta Gaslini Hospital, Genoa, Italy provided answers to a semistructured questionnaire with open questions on end-of-life procedures. Here we contrast the point of view of the various staff member in order to enlighten the principal ethical and emotional nodes that are entailed by the procedure. Among the most complex issues we found to be the level of discretionality in medical decision making, which faces the other staff members with doubts and moral dilemmas, the situations in which the parents do not share a common view on the procedure and the deep conflict that is raised when adolescent patients ‘want to know’ while parents seems to be unable to tolerate this degree of painful but essential self-consciousness in their ‘child’.