Dementia Patients Likely to Receive Intense Treatment at End-of-Life

Nursing home residents with advanced dementia often receive burdensome interventions at the end-of-life rather than palliative care or hospice care, particularly among male patients, new research has found.

Researchers examined the medical records of more than 27,200 nursing home residents in the late stages of dementia who died between June 1, 2010 and March 31, 2015. The patients had a median age of 88-years-old.

Despite that population’s limited life expectancies, they often receive aggressive treatments in their final days that do not promote comfort and could be distressing to individuals with dementia. Some of these include antibiotics, physical restraint, hospitalization, emergency department visits, invasive procedures and mechanical ventilation. Among these patients, 13.6% passed away in an acute care facility. 

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Male patients were significantly more likely than female patients to experience these burdensome interventions, the study found.

“This suggests that these nursing home residents with advanced dementia are not necessarily perceived as having a terminal condition in the same way a cancer patient might be, and because of that they are not receiving optimal palliative care,” said Nathan Stall, M.D., a physician researcher at ICES in Toronto and lead author of the study. “When you ask physicians or family caregivers for people who have advanced dementia, more than 90% of them will strongly favor palliatieve care as the direction that care should take. There is clearly a huge opportunity here to try and avoid these burden some interventions and to be able to authorize palliative care for these individuals towards the end of life.”

Among the study participants, only slightly more than 12% saw a palliative care physician in the year before death, but those who did were 50% less likely to experience a transition to another care setting and were 25% percent less likely to receive antibiotics, the study found.

Nursing home residents are at high-risk of being colonized with microorganisms, including drug-resistant strains, Stall told Hospice News. The indiscriminate use of antibiotics, often when the patient does not have a bacterial infection, places them at higher risk of contracting drug-resistant illness as well as subjecting them to the drugs’ side effects. Clinicians often administer antibiotics intravenously for these patients, which can cause them distress.

Patients suffering from advanced dementia experience profound memory impairment, are often unable to recognize family and have a limited ability to communicate. They sometimes cannot walk and require assistance with nearly every aspect of daily living. They may not understand what is happening to them when they are moved to a new location, such as a hospital, and subjected to intensive interventions.

Though this research focused on nursing home patients, advanced dementia patients in other settings may have a similar experience.
“We were looking specifically at the nursing home setting, but I think some of our findings clearly have implications beyond that, maybe for patients being cared for in their homes as well. This is an issue that has wide importance,” said Paula Rochon, M.D., physician at the Women’s College Research Institute, Women’s College Hospital, Toronto, and co-author of the study. “It’s important to get people to think earlier on about what their wishes are in terms of the way they want to be treated and cared for. When you are approaching the end of life, perhaps you would want to switch your focus more towards quality of life and comfort.”