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Many Ontario nursing home residents with advanced dementia, especially men, are subject to treatments and procedures that potentially add to their distress and discomfort during their final days of life, researchers have found.

In a study, published in JAMA Network Open on Friday, researchers found nursing home residents with advanced dementia often experience “burdensome interventions,” which include invasive procedures, physical restraints, transitions of care to unfamiliar and stressful settings, such as hospital emergency departments, and antibiotics in the last 30 days of life.

“These are interventions … that are often avoidable, may not improve comfort and they may be distressing to nursing home residents and their families,” said lead author Nathan Stall, a geriatrician and research fellow at the Women’s College Research Institute in Toronto.

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Among all nursing home residents in Ontario who died between June 2010 and March 2015 at the age of 66 or older, one in five were hospitalized, one in 10 visited a hospital emergency department and one in seven died in an acute care facility at the very end of life. Nearly 10 per cent received life-threatening critical care, 29 per cent were physically restrained and more than one-third received an antibiotic, the study found. Some of these burdensome interventions, including hospitalizations, emergency department visits, and antibiotics, were particularly common among male residents.

Individuals are considered to have advanced dementia if they have profound memory impairment and minimal verbal communication, and are unable to walk or have great difficulty doing so. They are also unable to perform most, if not all, basic activities of daily living, such as feeding themselves, bathing and getting dressed.

The findings of the study underscore the need for health-care practitioners, individuals with dementia and their family members to have conversations early on after diagnosis to plan and make sure those with dementia receive the care they want as their condition progresses, the researchers said. They added the study suggests health-care practitioners and family members often do not view advanced dementia as a terminal condition, even though it should be considered as such.

“Because of that, many people with advanced dementia do not receive optimal palliative care,” said co-author Paula Rochon, a geriatrician and vice-president of research at Women’s College Hospital.

Moreover, the sex-specific differences they found point to biases in care. Previous research has shown men tend to receive more invasive treatments and procedures than women, which may be advantageous for men when they are younger, Dr. Stall said. But, he said, he and his team showed this bias persists even at the end of life.

The researchers examined data held at ICES (formerly known as the Institute for Clinical Evaluative Sciences) for 27,243 nursing home residents with advanced dementia, 71 per cent of whom were women.

Nearly 29 per cent of male residents were hospitalized in the last 30 days of life, compared with 19 per cent of women. Close to 11 per cent of men visited emergency departments, compared with 8 per cent of women. And 41 per cent of men were given antibiotics, compared with 34 per cent of women.

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Thirty per cent of men and 28 per cent of women were physically restrained.

Thomas Hadjistavropoulos, a professor of psychology and research chair in aging and health at the University of Regina, who was not involved in the study, said most public nursing home facilities in Canada have no-restraint policies, and physically restraining residents has been falling out of favour.

Dr. Hadjistavropoulos said residents with advanced dementia can become agitated and aggressive due to untreated pain or pain that is not adequately recognized. Rather than physically restrain them, “it might be easier to actually assess the pain, properly treat it, and those behaviours would [decrease],” he said.

When it comes to decisions about invasive procedures, facilities usually turn to a relative or legal guardian, Dr. Hadjistavropoulos said. In Canada, he said, most residents do not have a legal guardian, so the decision-making goes to the next of kin, typically a spouse or adult child. In most cases, he said, he believes the next of kin tries to do what is best for the resident, and follows the advice of medical professionals.

Dr. Stall said previous research has shown that when family members are educated about the terminal prognosis and clinical course of advanced dementia, the individual with dementia is much less likely to receive aggressive care at the end of life.

He also said his team’s findings suggest there is an opportunity to improve palliative care, especially in nursing home settings. Only one in eight residents saw a palliative care doctor in the last year of life. But those who did were 50 per cent less likely to be hospitalized and visit an emergency department, and 25 per cent less likely to receive antibiotics.

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Furthermore, he said, nursing homes could use more resources. When staff members are overwhelmed and have too many residents under their care, they may transfer residents to a hospital setting, even if they know such a move is against their wishes.

“They can’t provide the care and attention [residents] need to die in setting they’ve chosen to die,” Dr. Stall said. “That’s a real problem and something that I think findings like this could help motivate change.”

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