When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings

Abstract

Background: Little is known about dying peacefully with dementia in long-term care facilities. Dying peacefully may be influenced by characteristics of the palliative care provided and characteristics of the long-term care setting. If so, dying peacefully may serve as a quality indicator for palliative care in dementia. Aim: This study aims to describe whether residents with dementia in Dutch long-term care facilities die peacefully and to assess which characteristics of the resident, the palliative care provided and the facilities are associated with dying peacefully. Design and Setting: We analysed existing data from the Dutch End of Life in Dementia study, collected between January 2007 and July 2010 in 34 long-term care facilities in the Netherlands. We used descriptive statistics and Generalised Estimating Equation models. Results: The sample consisted of 233 residents with dementia. Family members indicated that the resident died peacefully in 56% of cases. This percentage ranged from 17% to 80% across facilities. Residents were more likely to die peacefully if they had an optimistic attitude, if family found that there were enough nurses available and if residents died in facilities with a moderate (versus no) perceived influence of religious affiliation on end-of-life decision-making policies. Conclusions: Only half of the residents with dementia in Dutch long-term care facilities die peacefully, as perceived by relatives. In addition to residents’ optimistic attitude, facility characteristics are associated with dying peacefully, which suggests that ‘the percentage of relatives who indicate that the patient died peacefully’ can function as a quality indicator.