Awareness of impending death for residents of long-term care facilities

Aim. To explore awareness of impending death for very old persons in long-term care facilities. Background. The trajectories of decline that are associated with chronic progressive diseases in advanced old age have few prognostic markers. Consequently, it is difficult to determine when to start palliative or end-of-life care. Design. Mixed methods. Methods. Data were collected in three long-term care facilities in Canada. Statistical data were subjected to basic descriptive analysis. Qualitative data were collected using methods commonly associated with ethnography including interviews, focus groups, observations and artefact review. Constant-comparative analysis of qualitative data occurred as data were collected. Results. A 2-stage layered awareness of impending death was identified: first generalised and then clinical awareness. Generalised awareness was characterised by an understanding of human mortality and an understanding of the person's nearness to the end of an expected lifespan. Care routines and use of resources were not influenced by this early awareness. Clinical awareness of impending death was later acknowledged when health status changes suggested that death was likely within a few hours or days. The care then changed substantially to palliative in nature. Conclusions. Despite an awareness that death occurs naturally at the end of a long life and/or long illness, a serious decline towards death was not noticed or acknowledged until the last few hours or days of life, thus limiting palliative care to late-stage pain and symptom management. Implications for practice. Although this late-stage awareness of impending death is arguably the first necessary step for a change in nursing homes to a palliative-oriented approach to care for people who are nearing death in late life, timely acknowledgement of the potential for death is needed to facilitate improvements in care for residents of long-term facilities.