The influence of long-term care culture on awareness of impending death
Despite their proximity to death because of advanced old age and disability necessitating institutionalization, the oldest-old have rarely been the recipients of a comprehensive palliative approach to care or the focus of palliative care research. Failure to adopt a palliative approach to care of the oldest-old, particularly for frail residents of LTC facilities, has been attributed prognostic uncertainty in the context of chronic progressive diseases and poor resident-tostaff ratios. The
... e of LTC facilities has been identified as an important factor for the development of palliative care in LTC facilities. However, research has not been undertaken to examine the influence of beliefs and values about dying and death, or contextual factors on the end-of life care provided there. This research study addresses this gap using a two-stage mixed methods approach carried out in three LTC facilities in Ontario. In the first stage, all LTC residents who died over a 12 month period were described based on a review of decedent records. In the second stage, ethnographic methods were used to uncover cultural influences on the development of an awareness of impending death among participants in three LTC facilities. The chart review revealed that 68.1% of deaths were of the oldest old, and 63.1% were of women. Advance directives had been completed for 97.3% of the 182 decedents. Death occurred in the LTC facility for 90.1% of the 182 decedents. Death was most commonly attributed to dementia and pneumonia, or other progressive, chronic conditions. Impending death was identified and palliative measures begun when it seemed certain that death would occur within a few days or hours. Thematic analysis of the ethnographic data revealed that a generalized awareness of human mortality was maintained until within a few days of death. Clinical awareness of impending death was acknowledged by staff and family members only when significant changes in the dying resident's status necessitated a change in care routines. Four themes related to the influence of LTC culture on awareness of impending death were identified: (a) the belief that LTC facilities are places for living rather than dying, (b) the context of limited resources and high demands for care, (c) the belief that that no one should die alone, and (d) the belief that no one should die in pain. This report concludes with a discussion of the findings of this research study in relation to the existing discourse on LTC facilities as places for living, and the absence of a palliative care discourse that is appropriate in the context of age-related frailty.