How do our older adults die? The perception of family members about suffering in the last year of life

Objectives: To characterize the signs and symptoms of suffering, the circumstances of death, and health service use in the 12 months prior to death in a cohort of community-dwelling older adults according to relatives’ perception, as well as to verify the relationships between baseline frailty and signs/symptoms of suffering in the last year of life. Methods: This retrospective cohort study used data from the Frailty in Older Brazilians (FIBRA) Study. Home interviews were carried out with the relatives of deceased older adults. Descriptive statistical analyses were performed, including adjusted prevalence ratios through Poisson regression. Results: A total of 192 family members participated (64.58% women). The mean age of the deceased was 80.59 years (59.90% women; 27.08% with no formal education). In the year before death, 51.34% had fatigue, 43.68% had pain, 42.63% had anorexia, 41.27% had dyspnea, and 41.21% suffered a fall. Most died either at home (52.10%) or in the hospital (41.66%). The most frequent causes of death were circulatory and respiratory system diseases and neoplasms; 29.63% died suddenly, 51.05% were admitted to an intensive care unit, 52.60% were hospitalized, 58.76% used pain medication, and 27.13% received home care. Relative to non-frailty, baseline frailty was associated with dependence (prevalence ratio = 2.52) and pain medication use (prevalence ratio = 1.52) in the last year of life. Conclusions: Signs and symptoms of suffering in the last year of life were high among community-dwelling older adults, highlighting the need to support them and their families through provide palliative care.