Existential challenges and coping in palliative cancer care : Experiences of patients and family members

Sammanfattning: The overall aim of this thesis was to gain knowledge about the existential crisis in patients and family members caused by an incurable cancer and how the crisis is managed. Two methodological approaches were used. Semi-structured tape-recorded interviews (20 patients enrolled in palliative care and 20 family members) were analysed using hermeneutics. A postal questionnaire with open-ended questions was distributed and the responses (103 patients enrolled in palliative care) were analysed with qualitative content analysis. In Study I patients and family members experiences of existential loneliness were investigated. The disease had brought changes to their day-to-day life and to the patients bodies which had made them vulnerable and exposed as they were reminded of their mortality. It was the patient s impending demise that was the primary source for experiences of existential loneliness in both the patients and family members. Patients experiences of helplessness and powerlessness were investigated in Study II. Challenges caused by symptoms, loss of control and autonomy, of feeling ignored, lonely and uncertain constituted the basis for the experiences for helplessness and powerlessness. Those feelings were reinforced by the aspects of suddenness, high intensity and lengthiness which undermined the patients coping skills. In Study III family members outlined responsibility as a demanding task but also as a coping strategy. They had increasingly become aware that the disease was affecting their whole family. In the first place their responsibility had been to see to the patient s best. But their undertakings also included their own and other family members wellbeing as well. By holding on to structures that supported life and meaning they mitigated the impact of harmful reminders of death and prevented meaninglessness from spreading. The patients shaping of useful coping strategies to restrain death (Study IV) could be symbolised as a cognitive and emotional pendulum, swinging between the extremes of life and death. They strived to find factors that could help them to keep death at a discreet distance and preserve their links to life. These links were togetherness, involvement, hope and continuation and they served as a shield against hurtful feelings connected to their impending death. The impact of the physical body was evident in all four studies. Despite the fact that the body is usually not regarded as being an existential aspect, the results stress that human existence is ultimately based in the body. Both patients and family members had experienced that the patient s body had became a detector of life and death. The results of this thesis illuminate the profound and inevitable impact of death-threat in a palliative context. Primarily it exerts influence on the patient but it affects family members as well.