[Exploring life-experience of the staff and volunteers assisting pediatric patients in end-of-life situations] [Article in Italian] • I vissuti dello staff e dei volontari che assistono pazienti pediatrici terminali

Abstract

The development of guidelines for palliative care in the paediatric settings is judged to be still incomplete and characterized by many controversial issues; in order to explore the life-experience of individual health care professionals, we proposed a semi-structured questionnaire with open questions on end-of-life procedures to the staff members of the Paediatric Onco-hematology Ward of the University of Padua, of the Oncology Ward and in the Home Assistance Module of the Giannetta Gaslini Hospital, Genoa, both in Italy. This paper will focus on the responses provided to the third question: “In your opinion, can inducing the suspension of the state of consciousness be counted among end-of-life procedures? If so, how and when?”. Staff members were found to face challenging interactions at at least three levels: within the professional team, with respect to the parents and with respect to the adolescent patients. Among the most complex issues raised by the participants we found the moral distress sometimes experienced by nurses with respect to the decisions assumed by doctors, as stated by a nurse: “Everything is subjective in those 24 hours (…) and you are to do or not do certain things and it makes you feel distressed”. Second, it emerged that the relationship with the parents becomes very challenging when the two are not in agreement: “The father wants to give the morphine, but the mother secretly closes the drip”. Finally, the relationship of trust with the adolescent patients is under threat when they ‘want to know’ while parents seem to be unable to tolerate this degree of painful but essential self-consciousness in their ‘child’: “He locked me in the room and asked, ‘Am I dying?’, and I wanted to die at that point…”. Our study shows that health care professionals require not just guidelines but a tailor-made training and support which integrate much deeply the therapeutic as well as the moral and philosophical approaches to the issues raised by palliative care in paediatric settings. Articoli Selezionati del Congresso “Medicina Narrativa e Comunicazione nella Pratica Clinica” · Cagliari · 14 Aprile 2014 Guest Editors: Massimiliano Zonza, Vassilios Fanos, Gian Paolo Donzelli

Keywords

• terminal sedation
• pediatric palliative care
• staff
• phenomenologic-hermeneutic approach
• anatomical-clinical method
• pediatric psycho-onchology