A hierarchy of personal agency for people with life-limiting illness

Campbell, Ann and Carrick, Lorna and Elliott, Robert (2013) A hierarchy of personal agency for people with life-limiting illness. American Journal of Hospice and Palliative Medicine. pp. 2-9. ISSN 1049-9091

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      Abstract

      The purpose of the study was to discover how individuals diagnosed with a life-limiting illness experienced themselves as agents, even in the face of death. In this qualitative, multiple case study design four female outpatient hospice patients with terminal illnesses received humanistic counselling to explore their experiences of themselves and their illness. A graded set of 8 levels of personal agency emerged from analyses of the texts of their sessions, ranging from a passive, objectified Non-agentic mode to an active, autonomous Fully Agentic mode, with multiple subcategories representing further gradations within levels. Our results are consistent with guidelines for supportive and palliative care with advanced cancer, which specify that dying patients’ needs be assessed and that they be involved in decisions about their care.