DISRUPTING NARRATIVES OF LOSS: REFLECTIONS ON END-OF-LIFE CARE FOR PEOPLE WITH ADVANCED DEMENTIA
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.012 | 0.025 |
| Meta-epidemiology (narrow) | 0.002 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.020 | 0.024 |
| Scholarly communication | 0.009 | 0.010 |
| Open science | 0.003 | 0.015 |
| Research integrity | 0.004 | 0.008 |
| Insufficient payload (model declined to judge) | 0.002 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".