Severe, lasting impairment that some consider ‘worse than death’ affects many residents after long-term care admission

Many residents admitted to long-term care homes become severely disabled within five years, and live in states where they are unable to make everyday decisions for themselves.

According to new research from Bruyère Health Research Institute and ICES, 20% of residents newly admitted to long-term care became permanently unable to make everyday decisions for themselves within five years. A significant number of long-term care (LTC) residents experience states of severe cognitive and physical impairment, leaving them unable to make personal decisions—like what to eat or what to wear—and unable to communicate with staff or loved ones.

“Our study set out to trace the experiences of residents newly admitted to long-term care, and those who lived a year or more in a state of severe disability,” says lead author Ramtin Hakimjavadi, Internal Medicine Resident at the University of Ottawa. “We should be talking more about what a meaningful, high-quality end of life looks like, given most older adults at this stage prioritize quality of life.”

Published in JAMA Network Open, the study included 120,238 adults 65 and older who were newly admitted to LTC facilities in Ontario, Canada, between 2013 and 2018. Participants were followed until death, discharge from LTC, or April 1, 2023.

Key findings

• 20% of residents admitted to LTC became permanently unable to make everyday decisions for themselves over the following five years, and half lived for more than 262 days with this level of disability.

• 13% of residents admitted to LTC became totally dependent for all care, including bathing, toileting, and eating over the study period. Half of these people lived for more than 45 days with this level of disability.

• Residents under 80 years old and those who had dementia were more likely to live longer once they reached total care dependence and were unable to make any decisions for themselves.

• Residents with do-not-resuscitate or do-not-hospitalize orders did not live as long after developing impairment or severe disabilities compared to residents without advance care directives.

“In interviews, long-term care residents have expressed that loss of independence is more distressing to them than the thought of dying. We are not offering resident-centered or evidence-based care if we don’t talk about the possibility of severe disability and ask about the circumstances when life-prolonging treatments would not be acceptable,” says Hakimjavadi.

In this population of LTC residents, 65% had a do-not-resuscitate (DNR) order and 25% had do-not-hospitalize orders. These advance care directives reduced time spent living with severe disability, likely because the residents’ preferences were discussed, and care partners or providers knew how to support their end-of-life decisions.

“Residents, their family members, and care teams should have open discussions about what quality of life means to the resident, considering the possibility of prolonged disability,” says senior author Dr. Daniel Kobewka, an investigator at Bruyère Health Research Institute and adjunct scientist at ICES.

“Planning ahead can help ensure that future care aligns with personal values, including the choice to prioritize comfort and dignity over life-prolonging interventions,” adds Kobewka.