• Posted April 29, 2025

Fate Worse Than Death: Many Long-Term Care Residents Lose All Independence, Study Says

A significant number of long-term care patients consider their state a fate worse than death, as they become completely powerless and vulnerable due to their severe disabilities, a new study says.

About 20% of people newly admitted to long-term residential care become permanently unable to make everyday decisions for themselves within five years, researchers reported April 23 in JAMA Network Open.

Their cognitive or physical impairments leave them unable to make even the most mundane decisions, like what to eat or what to wear, researchers said. They’re even unable to communicate with staff or loved ones.

“In interviews, long-term care residents have expressed that loss of independence is more distressing to them than the thought of dying,” lead researcher Dr. Ramtin Hakimjavadi, a resident in internal medicine at the University of Ottawa in Canada, said in a news release.

These folks aren’t receiving the best 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,” Hakimjavadi added.

For the study, researchers analyzed data on more than 120,000 seniors 65 and older admitted to long-term care facilities in Ontario between 2013 and 2018.

Results showed that:

• 20% of residents developed disabilities so severe within five years they lost the ability to make their own everyday decisions.

• 13% became totally dependent for all care including bathing, toileting and eating.

• Residents under 80 and those with dementia were more likely to live longer once they completely lost their independence due to disability.

Among the patients in this study, 65% had a do-not-resuscitate order and 25% had a do-not-hospitalize order. These advanced care directives reduced the time people spent with total disability, researchers found.

Those with do-not-resuscitate and do-not-hospitalize orders did not live as long after losing their independence as those without advanced care directives, results showed.

“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,” said senior researcher Dr. Daniel Kobewka, an investigator at Bruyère Health Research Institute and adjunct scientist at the Institute for Clinical Evaluative Services in Ottawa.

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

More information

AARP has more on long-term care.

SOURCE: Institute for Clinical Evaluative Services, news release, April 23, 2025