RESUMO
OBJECTIVE: The study was designed to explore the subjective perspective on end-of-life practices in three different groups of pediatric onco-hematologic nurses. METHOD: In 2004-2005 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 was interviewed using a semistructured questionnaire with open questions on end-of-life procedures. The results were returned to the interviewees through group meetings. Here, we examine replies given regarding terminal sedation. RESULTS: With regard to the nurses from Padua, common features came together in a consolidated practice. The amount of suffering and physical pain was considered an element in determining the use of sedation: "when there is atrocious suffering." Another aspect was "painful awareness," the difficulty in being able to bear the fact that the child is aware that death is imminent. The nurses from Genoa stated that the procedure was adopted mainly for three reasons: to sedate the pain, to calm the hunger for air, and to control the anguish caused by the realization that death was imminent or unavoidable. It was noted that the nursing staff of the Home Assistance Unit, Genoa found themselves in a privileged position regarding this procedure both because of the strong relationship established among child, parents, and nurse, and because of being able to take shared decisions after in-depth discussion. SIGNIFICANCE OF RESULTS: The results enlighten the critical role of the nursing staff with respect to this procedure, given the involvement with the families and their ability to understand the child's demands and intimate expectations.
