Nursing Home Residents With Advanced Dementia Often Overtreated at End of Life

By Marilynn Larkin

August 21, 2019

NEW YORK (Reuters Health) - Nursing home residents with advanced dementia, especially men, receive "burdensome interventions" and antibiotics in their final days, a population-based study in Canada reveals.

"Nursing homes become a common site of care for people living with advanced dementia who have a median survival of 1.3 years," Drs. Nathan Stall and Paula Rochon of Women's College Hospital in Toronto, told Reuters Health in a joint email. "In the advanced stages of the disease, the focus of care should generally be on maximizing quality of life."

Instead, their JAMA Network Open report, online August 16, documents a wide range of "burdensome interventions" such as transitions of care, invasive procedures, and physical restraints.

These interventions, they said, "are often avoidable, may not improve comfort, and are frequently distressing to residents and their families."

"We found that in the last 30 days of life, nearly one in 10 nursing home residents visited an emergency department, more than one in five were hospitalized, and one in seven died in an acute care setting," they said.

"In addition," they noted, "almost one in 10 residents received life-threatening critical care; more than one in four were physically restrained; and more than one in three received antibiotics."

"We also found that compared with women, men had much higher rates of burdensome interventions and antibiotic therapy and were significantly more likely to die in an acute care facility," they said.

The team analyzed data from more than 27,000 nursing home residents with advanced dementia (70.1% women) who died between 2010 and 2015 at a median age of 88.

Specifically, they found that in the last 30 days of life, 21.8% of residents were hospitalized (18.9% women vs. 28.9% men); 8.9% had an emergency department visit (8.2% women vs. 10.8% men); and 13.6% died in an acute care facility (11.8% women vs. 18.1% men).

With regard to invasive procedures, 9.8% received life-threatening critical care (8.6% women vs.12.7% men), and 0.8% received mechanical ventilation (0.6% women vs. 1.2% men).

Among the 36.1% of residents who had a Resident Assessment Instrument Minimum Data Set, version 2.0, completed in the last 30 days of life, 28.9% were physically restrained (28.3% women vs. 30.4% men). In addition, 36.2% of all residents received an antibiotic (34.1% women vs. 41.4% men).

Further analyses revealed that men were more likely than women to have a transition of care (adjusted odds ratio, 1.41) and receive antibiotics (aOR, 1.33).

As Drs. Stall and Rouchon noted, only 12.1% of patients saw a palliative care physician (12.3% women vs.11.8% men), but for those who did, the odds of an end-of-life transition of care were more than 50% lower (aOR, 0.48) and the odds of receiving antibiotics were more than 25% lower (aOR, 0.74).

"Having a palliative care assessment decreased the use of burdensome interventions at the very end of life," Drs. Stall and Rouchon affirmed. "Previous research also highlights that when nursing home residents have family members who understand the terminal prognosis and clinical course of advanced dementia, they are less likely to receive aggressive care at the end of life."

Dr. Jennifer Carnahan, a Regenstrief Institute research scientist and Indiana University assistant professor of medicine, commented by email, "The take-home message is that goals of care discussions should happen early for all patients."

"Large studies like this are often unable to acquire the granular data that would better explain how this is playing out for individual patients," she told Reuters Health. "For example, there is little information on how or even whether goals of care were addressed for the patients in the study and who was making the medical decisions for these patients."

"This is important," noted Dr. Carnahan, who was not involved in the study, "because having goals of care discussions with patients and their caregivers can lead to less hospital admissions and to care that is concordant with the patients' and caregivers' wishes."

"Without well established goals of care, families and friends who serve as surrogate decision makers often find themselves in charge of making decisions that they may not choose for themselves, such as aggressive care, but feel morally obligated to choose for their loved one with dementia," she said. "Interestingly, women also make up the majority of caregivers, who often make these decisions for more aggressive care."

"This demonstrates an interesting example of how preferential treatment based on sex may actually backfire," she added. "We typically think of men as benefiting from sexism, possibly by receiving more aggressive care. In the group from this study, aggressive treatment is generally not recommended because of limited life expectancy and the toll that this type of care can have on people with advanced dementia."


JAMA Netw Open 2019.