What Is the End of Life Period? Trajectories and Characterization Based on Primary Caregiver Reports

Background: As the population lives longer, end of life (EOL) is emerging as a distinct life phase, about which there is still limited understanding. Characterizing this important period is vital for clarifying issues regarding trajectory and decline at EOL and for health service planning on an institutional, communal, and societal level. In this article, we aim to characterize the EOL period, examining the duration and number of EOL stages, as well as functional, attitudinal, and emotional trajectories. Methods: In this cross-sectional study, 70 primary caregivers of deceased persons were interviewed. Standardized rates of functional, attitudinal, and emotional change across the EOL period were calculated. Frequencies were compared using the McNemar statistical test. Results: EOL period was found to have a median length of 3.25 years, and an average of approximately three progressive stages. The duration of EOL stages tended to decrease as death approached. Unexpected events (eg new medical diagnosis/accident) served as the precipitating event for the EOL period for approximately half of the deceased persons, and changes in existing conditions (eg health status/cognitive state) were also reported to precipitate EOL for a similar proportion. Reports of functionality across stages found the steepest decline in the "physical" domain and the most moderate decline in the "social" domain. With each stage, positive indicators, such as "will to live," showed a progressive decline, whereas negative indicators, including "suffering" and "dependence level," progressively increased. Conclusions: Results help characterize EOL trajectories and should inform care planning and decision making at various levels. In addition, they suggest a methodology for better understanding EOL.