New research from the Bruyère Research Institute and ICES reveals that a significant number of individuals admitted to long-term care (LTC) facilities in Ontario experience severe and lasting cognitive and physical decline. Among the 120,238 adults aged 65 and older who entered LTC between 2013 and 2018, 20% became permanently unable to make everyday decisions for themselves within five years. These individuals lost the ability to choose what to eat or wear, and could no longer communicate with staff or loved ones. For half of this group, this state of profound impairment lasted more than 262 days, representing a lengthy and distressing period of life with severely diminished autonomy.
The study, which followed participants until death, discharge from LTC, or April 2023, aimed to document the trajectory of residents’ experiences in the years following admission. Lead author Ramtin Hakimjavadi, an Internal Medicine Resident at the University of Ottawa, noted that the research sought to highlight the realities faced by those who live for extended periods in states of extreme disability. He emphasised the importance of rethinking end-of-life care, stating, “We should be talking more about what a meaningful, high-quality end of life looks like, given most older adults at this stage prioritise quality of life.”
Beyond the 20% who lost decision-making capacity, the study also found that 13% of residents became entirely dependent for all aspects of care, requiring help with bathing, toileting, feeding, and other fundamental tasks. Half of these individuals lived more than 45 days in this state of complete dependence. Interestingly, the data showed that residents under 80 and those with dementia tended to live longer after reaching such levels of impairment. This suggests that specific populations may endure prolonged periods in these severely disabled conditions, raising further questions about the goals and limits of life-prolonging care.
Advance care directives emerged as a key factor influencing outcomes. Residents who had Do-Not-Resuscitate (DNR) or Do-Not-Hospitalise (DNH) orders generally lived shorter periods following the onset of severe impairment, compared to those without such instructions. This finding may reflect the role of advance directives in guiding care that aligns more closely with residents’ values and wishes, potentially avoiding invasive interventions that might extend life but not improve its quality. In this cohort, 65% of residents had DNR orders, and 25% had DNH orders, suggesting that such planning is familiar but still not universal.
The emotional and psychological toll of these conditions cannot be overlooked. According to Hakimjavadi, residents have expressed that losing independence can be more distressing than the prospect of death itself. When conversations about future disability and care preferences are absent, families and providers may default to continuing all available treatments, even when they may no longer offer comfort or dignity. Without proactive discussions, the healthcare system risks delivering care that is neither evidence-based nor centred on the person’s values.
Dr Daniel Kobewka, senior author and investigator at Bruyère, concluded that early and open conversations between residents, families, and care teams are essential. “Planning ahead can help ensure that future care aligns with personal values, including the choice to prioritise comfort and dignity over life-prolonging interventions,” he said. The study serves as a compelling call to action: that care in long-term facilities must extend beyond physical survival and embrace a deeper understanding of what it means to live well, even in the final chapters of life.
More information: Ramtin Hakimjavadi et al, Cognitive and Functional Decline Among Long-Term Care Residents, JAMA Network Open. DOI: 10.1001/jamanetworkopen.2025.5635
Journal information: JAMA Network Open Provided by Institute for Clinical Evaluative Sciences
