Physical and Psychological Distress Are Related to Dying Peacefully in Residents With Dementia in Long-Term Care Facilities

Abstract

Context: Although dying peacefully is considered an important outcome of high-quality palliative care, large-scale quantitative research on dying peacefully and the factors associated with a peaceful death is lacking.

Objectives: To gain insight into how many residents with dementia in long-term care facilities die peacefully, according to their relatives, and whether that assessment is correlated with observed physical and psychological distress.

Methods: This was a retrospective cross-sectional study of deceased nursing home residents in a representative sample of long-term care facilities in Flanders, Belgium (2010). Structured post-mortem questionnaires were completed by relatives of the resident, who were asked to what extent they agreed that the resident "appeared to be at peace" during the dying process. Spearman correlation coefficients gave the correlations between physical and psychological distress (as measured using the Symptom Management at the End of Life with Dementia and Comfort Assessment in Dying at the End of Life with Dementia scales) and dying peacefully (as measured using the Quality of Dying in Long Term Care instrument).

Results: The sample comprised 92 relatives of deceased residents with dementia. In 54% of cases, relatives indicated that the resident died peacefully. Weak-to-moderate correlations (0.2-0.57) were found between dying peacefully and physical distress in the last week of life. Regarding psychological distress, weak-to-moderate correlations were found for both the last week (0.33-0.44) and last month of life (0.28-0.47).

Conclusion: Only half of the residents with dementia died peacefully as perceived by their relatives. Relatives' assessment of whether death was peaceful is related to both physical and psychological distress. Further qualitative research is recommended to gain more in-depth insights into the aspects on which relatives base their judgment of dying peacefully.

Keywords: Peaceful death; dementia; long-term care facilities; nursing homes; palliative care; quality indicators; spirituality.