The perspective of the nursing staff on terminal sedation in paediatric onco-haematology: a phenomenologic-hermeneutic study.

OBJECTIVE: the study was designed in order to explore the subjective perspective on end-of-life practices in 3 different groups of paediatric onco-haematologic nurses. METHODS: In 2004-5 each member of the nursing staff on the paediatric Onco-Haematology Ward of the University of Padua (Italy), the Oncology Ward and Home Assistance Module of the Giannetta Gaslini Hospital, Genoa (Italy) was interviewed using a semi-structured questionnaire with open questions on end-of-life procedures. The results were given back 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 his death is imminent. The nurses from Genoa declared that the procedure was adopted mainly for three motives: 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 between child, parents and nurse, and because of being able to take shared decisions after in-depth discussion. SIGNIFICANCE OF THE RESEARCH: results enlighten the critical role of the nursing staff with respect to this procedure, given the involvement with the families and their ability to read out the child’s demands and intimate expectations.