Abstract
IMPORTANCE: Care decisions for long-term care (LTC) residents should be frailty-informed to maximize well-being and avoid burdensome treatments that do not align with patient wishes. OBJECTIVE: To investigate the incidence and time spent living with severe impairment among LTC residents to help inform person-centered decision-making. DESIGN, SETTING, AND PARTICIPANTS: This retrospective cohort study was conducted among a population-based cohort of incident admissions to LTC facilities between April 1, 2013, and March 31, 2018, determined using administrative health data in Ontario, Canada. Ontario residents aged 65 years or older who were admitted to LTC were included. Participants were followed up until death, discharge, or April 1, 2023. Data analysis was completed from October 17, 2023, to March 31, 2024. MAIN OUTCOMES AND MEASURES: Outcomes were states of impairment that care partners identified as meaningful and some considered worse than death. The incidence of total care dependence, inability to make any decisions, inability to communicate, and incontinence of stool or urine was described. Survival after becoming impaired, characteristics of residents when they became impaired, and characteristics of those who survived for more than 1 year with each impairment were described. Residents at risk of a specific impairment (at-risk residents) were those who did not already have the impairment at admission. RESULTS: A total of 120 238 residents admitted to LTC (mean [SD] age, 84.3 [7.7] years; 77 868 female [64.8%]) were included. By the end of follow-up, 22 018 of 109 830 at-risk residents (20.0%) had become permanently unable to make decisions, 9138 of 118 132 at-risk residents (7.7%) had become permanently unable to communicate, 15 711 of 116 848 at-risk residents (13.4%) had developed total care dependence, and 30 449 of 92 974 at-risk residents (32.8%) had developed incontinence of stool or urine. Median (IQR) survival time was shortest for residents who entered a state of total care dependence (45 [5-310] days) and longest for those with newly developed incontinence of stool or urine (356 [79-1031] days). Younger residents (eg, median [IQR] survival after developing total care dependence, 133 (17-735) days for ages <80 years vs 30 (4-217) days for ages ≥80 years) and those with dementia at admission (eg, median [IQR] survival after developing the inability to make decisions, 318 [40-1020] days with dementia vs 74 [4-474] days without dementia) had longer median survival after entering a state of severe impairment. CONCLUSIONS AND RELEVANCE: In this study, severe permanent impairment in function and cognition were common and often present near the end of life for LTC residents, but a minority of residents lived in these states for years. These results suggest that building shared understanding and open communication about the natural course of frailty trajectories for LTC residents may support resident-centered medical decision-making.