La famille face à la maladie en phase terminale. Ethnographie dans une maison de soins palliatifs au Piémont (Italie)

• Main Author: Alessandro Gusman
• Format: Article
• Language: fra
• Published: Association Anthropologie Médicale Appliquée au Développement et à la Santé 2016-04-01
• Series: Anthropologie & Santé
• Subjects: palliative care; familial relations; caregiving; end of life decisions; Italy
• Online Access: http://journals.openedition.org/anthropologiesante/2019

The main definitions of palliative care include a reference to the family of the sick person as part of the unit of care. However, family members also often have a care-giving role for the dying person. Finding a balance between these two different roles is often a difficult task. Based on ethnographic research in a hospice in Turin (Italy), this article focuses on family tensions that eventually occur with the decisions concerning end of life, on the contrasts between the will of the patient and the ability/possibility of the family to take care of him, on the ethical dilemmas and on the drama of the “mutual pretense awareness” that often emerges in these situations. The above issues are explored with a particular attention to the Italian context, where the majority of the patients who arrive at the hospice are not aware (or not fully aware) of their diagnosis, nor of their prognosis.