People with advanced dementia spend their last days suffering the same pain, complications, and poor prognosis as people with other terminal conditions, according to a new study that urges better care focused on providing comfort at the end of their lives.
Dr. Susan Mitchell of Hebrew SeniorLife Institute for Aging Research and Harvard Medical School led a study of 323 patients with end-stage dementia at 22 nursing homes near Boston. Writing in this week's New England Journal of Medicine, they report that the life expectancy for advanced dementia patients was close to what late-stage cancer or congestive heart failure patients might anticipate. Like dying cancer patients, the dementia patients also experienced infections, fever, and eating problems.
"Dementia is a terminal illness," Mitchell said in an interview. "When families understand this is the end stage, most of them will want comfort care as the goal."
When the study began, the dementia patients had profound cognitive deficits. They couldn't recognize family members, they spoke fewer than six words, they were incontinent, and they couldn't get out of bed.
Over 18 months, a little more than half of them died, a death rate similar to metastatic breast cancer. In addition to frequent infections and trouble eating, one in three had shortness of breath and one in four was in pain.
In the last 90 days of their lives, four out of 10 went through "burdensome interventions," which the researchers defined as hospitalizations or tube feedings with questionable benefit. But whether a patient was brought to a hospital or fed through a tube depended on how much their family members understood about their condition, including the likelihood of pneumonia, fever, and eating problems.
About a quarter of family members who said they thought their loved one was likely to die within six months and understood the common complications allowed such an intervention. But about three-quarters of family members who said they did not understand the prognosis or the complications opted for that kind of intervention.
In an editorial also appearing in the New England Journal, Dr. Greg Sachs of the Indiana University School of Medicine said hospice and palliative care are not used often enough for dementia patients.
"Clinicians, patients' families, and nursing home staff need to recognize and treat advanced dementia as a terminal illness requiring palliative care," he writes. "Patients with advanced dementia do not need to have another serious illness to qualify for hospice care."
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