How sick and disabled, how far into advanced dementia, how close to death do elderly nursing home patients have to be before their physicians stop prescribing drugs that can cause uncomfortable side effects but show scant evidence of helping them?
Let me quickly acknowledge that this was my own reaction to a study published on Monday in JAMA Internal Medicine, part of its weekly “Less Is More” series. Researchers use far more measured terms; sometimes the things they report make you wonder how they manage that.
Consider this nationwide sample of 5,406 people with a diagnosis of advanced dementia who spent at least 90 days in a nursing home between 2009 and 2010. Most were over age 85 and had other diseases as well. The great majority, almost 70 percent, had a do-not-resuscitate order.
It’s always a heartbreaking situation. Dementia is a terminal disease, although family members don’t always recognize that and health care professionals don’t always explain it. By definition, these patients can no longer recognize family members; most are bedridden, with a vocabulary that has shrunk to five words or fewer.
“They can’t walk or feed themselves or communicate meaningfully,” said Dr. Jennifer Tjia, a geriatrician and palliative care specialist at the University of Massachusetts Medical School and the study’s lead author. “A lot also have severe swallowing difficulties.”
Moreover, Dr. Tjia added: “These folks have a very high mortality rate. Many die within six months.” A number of previous studies have shown that health care proxies, who make medical decisions for such patients, overwhelmingly say that their primary goal is comfort.
Yet pharmacy records revealed that most of these patients, almost 54 percent, received at least one of what the researchers delicately called “medications of questionable benefit.” More than a third were given a cholinesterase inhibitor (Aricept is the best known) and a quarter received memantine (Namenda), both commonly prescribed for dementia. More than 20 percent were on statins to lower cholesterol, and 7 percent were on blood thinners.
All these drugs were deemed “never appropriate” for palliative care patients with advanced dementia, in a list developed by a panel of geriatricians and published in the Journal of the American Geriatrics Society. And the United States Preventive Services Task Force recently concluded that in some patients with mild to moderate (not advanced) dementia, drug therapies brought “small improvements” in cognitive measures, but “the clinical significance of these improvements is uncertain.”
(Then why, I asked Dr. Tjia, describe them as of “questionable benefit?” Why not call them “medications of zero benefit”? She said that the drugs had their proponents and that discontinuing them remained controversial in some quarters, despite little evidence of effectiveness.)
If the only problem with such medications was uselessness (and cost, which averaged $816 per quarter), perhaps we would shrug. But as with any medical treatment, they can also do harm.
“I was a nursing home doc for years,” Dr. Tjia told me. “There’s an unappreciated personal cost to these patients in continuing these medications.”
Aricept and Namenda, for instance, can induce nausea and fainting and uncomfortable urinary retention. They can also cause heart arrhythmia, which in turn can lead to implanting a pacemaker. “A classic prescribing cascade,” Dr. Tjia said. “We’re treating the side effect of a drug with more drugs or, in this case, devices.”
People with severe dementia, one recent study found, are more likely than seniors with normal cognition to receive pacemakers. Statins have a documented risk of muscle pain, along with elevated blood glucose.
People who have lost the ability to speak can’t tell their doctors that they ache or constantly feel like vomiting. But the agitation or lashing out sometimes seen in patients with dementia — possibly triggering another round of drugs — sometimes reflects their physical discomfort. Discontinuing drugs sometimes helps them to remain alert and relaxed, although, again, there’s no strong published evidence either way.
Why are so many people in this unhappy situation, being given questionable drugs when even swallowing pills can be difficult?
As with many treatments, geography is destiny. In the Census Bureau’s Middle Atlantic Region — New York, New Jersey, Pennsylvania — about 45 percent of patients got at least one of these drugs. In the West South Central Region (Texas, Arkansas, Oklahoma, Louisiana), 65 percent did. Moreover, they were more frequently prescribed in nursing homes with higher use of feeding tubes.
“That indicates that there’s a level of discretion in what’s happening,” Dr. Tjia said. “It’s not just clinical need driving this.”
Nursing homes, hospitals, even cities and regions have their own cultures and practice patterns, and professionals often tend to follow their peers.
But emotions play a part as well, Dr. Tjia said. And who could disagree? The idea that a family is “doing everything” for a failing loved one, or a doctor for his or her patient, remains potent despite many warnings that not every drug or procedure is benign, despite full-fledged campaigns to persuade people to weigh the pluses and minuses.
“The idea that there could be benefits to stopping medication is still a pretty radical issue for most people,” Dr. Tjia said — and she meant both professionals and families. “For some folks, it’s a marker that the end is near, and that’s hard.”
In an editorial accompanying the study, Dr. Greg A. Sachs, an Indiana University geriatrician, said the findings “should cause all clinicians to reconsider their prescribing practices and other decision-making for a broad population of patients late in life.”
That would be nice. But meanwhile, family members can question the purpose and value of drugs their loved ones continue to receive as they decline. Especially when they’ve lost the ability to speak for themselves.