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  • DISRUPTING NARRATIVES OF LO...
    Puurveen, G.

    Innovation in aging, 07/2017, Volume: 1, Issue: suppl_1
    Journal Article

    Current discourse in research that examines end-of-life (EOL) care for people with advanced dementia is predominated by biomedicine that constructs a storyline of an experience dominated by the decline of the body. However, the focus on the dying body obscures the social, emotional, and spiritual elements of the dying experience. If we accept that the EOL is more than an experience of a deteriorating body, then research must take a holistic perspective and offer a counter narrative that attends to the depth of human experience. This paper presents findings from ethnographic case study research exploring how care staff and family understood the needs and experiences of women with advanced dementia nearing the EOL. In-depth interviews with 23 care staff (nursing, management and allied health) and 2 family members, over 600 hours of participant observation, and 30 hours of video observation were conducted in one nursing home. Informed by a dialogical perspective, thematic and narrative analyses revealed that while family and staff’s reflections were undergirded by a storyline of deterioration, their narratives were dominated by an ethical obligation towards the residents that went beyond fulfilling instrumental tasks and caring for the dying body. Rather, analysis showed that (1) encountering and acknowledging the residents’ personhood, (2) nurturing relationship, (3) negotiating contextual factors, and (4) acting out of love and compassion were central to provide responsive person-centred EOL care. Findings suggest that staff and family have a nuanced understanding of EOL care, which has important implications for practice and education of care providers.