Existential loneliness in a palliative home care setting

Background: The diagnosis of an incurable disease implies an existential crisis. This study focused on the emotions, perceptions, and experiences of existential isolation in palliative patients with cancer and their families. Materials and methods: A total of 40 respondents (20 patients and 20 family members) were interviewed in depth. All were Swedes who defined themselves as nonreligious. The patients were enrolled in an advanced hospital-based home care team. The interviews were taped, transcribed, and analyzed with a qualitative, hermeneutic method. Results: The data revealed experiences of existential loneliness with the impending death as a primary source. Experiences of being alone in "a world of one's own" were common. The changes in everyday life and the increasingly restricted social interaction because of the illness meant that the patient partly lost the protection against isolation that the spirit of community normally provides. Other situations that had a triggered the existential isolation were, for example, when a patient in need of support was left alone, when he or she was treated disrespectfully or in a way that made him or her feel invisible, or when people avoided contact because of uneasiness or fear. Changes in one's own body and mood gave rise to feelings of loneliness and unfamiliarity toward oneself. When a staff member touched the patient's body in a nonempathic way, this could induce feelings of being treated like an animal.