End of life care practice and symptom management outcomes of nursing home residents with dementia: secondary analyses of IQUARE trial.

Purpose: End-of-life care is a central issue in nursing homes. Poor care outcomes have been reported, especially among residents with dementia. Our aim was two-fold: to assess whether the diagnosis of dementia was associated with specific patterns of care and symptom management for residents with dementia during the last 6 months of life, and to compare these patterns of care between residents with dementia who died within 6 months and those who survived longer.

Methods: Secondary prospective analyses of the IQUARE trial (trial registration number NCT01703689). 175 nursing homes in South West France. Residents with and without dementia at baseline (May-June 2011), stratified according to their vital status at 6-month follow-up.

Results: Of 6275 residents enrolled in IQUARE study (including 2688 with dementia), 494 (7.9%) died within 6 months. Compared to residents without dementia (n = 254), those with dementia (n = 240) were less likely to be self-sufficient (OR = 0.08, 95% CI 0.01-0.64). They were more likely to have physical restraints (OR = 1.65, 95% CI 1.08-2.51) and less likely to be prescribed benzodiazepines (OR = 0.58, 95% CI 0.38-0.88). Among residents with dementia, those who died during the first 6 months of follow-up were more likely to be identified with a formal "end-of-life" status (OR = 5.71, 95% CI 3.48-9.37) although such identification remains low with only 15% of them. They were more likely to experience pain (OR = 1.43, 95% CI 1.04-1.97) and to be physically restrained (OR = 1.46, 95% CI 1.08-1.98). However, pain relief and psychological distress management were not improved.

Conclusions: Poor quality indicators such as physical restraints are associated with end-of-life care for residents with dementia. Among symptom management outcomes, pain medication remains low even if pain complaint increased at life end.