Health Literacy for Medical Doctors

Long time readers may remember my friends Bert and Madge, a retired couple. Bert unfortunately has progressive dementia, and has had a stroke. He cannot dress or bathe himself, is incontinent of urine and feces, and has other difficulties with activities of daily living. He also has a fairly profound aphasia, in other words he has great difficulty finding words and formulating what he wishes to say.

A few weeks ago, Madge just could not take care of him any longer, and placed him in an assisted living facility. It's not a nursing home -- it provides only custodial care. In order for him to stay there, he must be able to walk and cooperate with his caregivers. At first, he adjusted well to the change and seemed quite happy. But then, just a few days after he moved in, he suddenly became unable to stand or walk, started drooling, and otherwise had severely impaired motor control. Madge and the facility staff were both afraid that he'd had another stroke, and would have to be moved to a nursing home.

But then Madge looked at his medication list and saw that he'd been prescribed Risperdal (risperidone), an anti-psychotic medication. He is definitely not psychotic! She also remembered that when he had been hospitalized a few months back, the hospitalist had given him Haldol, a similar drug, and that a friend of hers who happened to know about these things told her not to permit anyone to prescribe antipsychotics for him in the future.

So Madge took Bert to the doctor and asked him to look up the side effects of risperidone. Most doctors would probably get offended at that point and tell her where to put her side effects, but this doctor did it. Uh oh!. "Risperdal may impair judgment, thinking, or motor skills." Also, "The most common side effects include anxiety, uncontrolled movements, constipation, nausea, upset stomach, runny nose, rash, vision changes, saliva increase, abdominal pain, inability to control urination, weight gain." And there's one more thing:

FDA Alert [4/11/2005]: Increased Mortality in Patients with Dementia-Related Psychosis

FDA has determined that patients with dementia-related psychosis treated with atypical (second generation) antipsychotic medications are at an increased risk of death compared to placebo. Based on currently available data, FDA has requested that the package insert for Risperdal be revised to include a black box warning describing this risk and noting that this drug is not approved for this indication.

Don't you think it would be a good idea for doctors to look up the side effects and the indications before they prescribe the fucking drug, not afterwards? And why did he prescribe this "medication" in the first place? Bert often has what might be called delusions. For example, he often believes that the assisted living facility is a ship -- perhaps he's back reliving his days as a naval officer. So what? Who cares? Let him believe that. And that belief is not due to psychosis, and there is no reason to believe that an antipsychotic medication will suddenly make him believe that he's on dry land.

In fact, these medications were never approved for use in dementia, but they have been widely prescribed to demented people. The reason is that drug companies managed to convince doctors that it was a good idea. How many people who are in nursing homes, immobile, incontinent, uncommunicative, are that way because of the drugs the doctors have pumped into them? A lot. Here's something I wrote a few years back:

With the increasing availability of pharmacological agents for the treatment of more and more conditions, elders, who experience high rates of morbidity, have experienced marked increases in drug prescribing and exposure to pharmaceuticals.

There are many reasons why prescribing to elders is problematic. Elders have higher rates of adverse side effects from some drugs. Furthermore, since elders often experience multiple illnesses or symptoms, they are likely to have many prescriptions. In U.S. nursing homes, residents are prescribed an average of about 7 or 8 different medications. Studies have found that elders in general use an average of 2 to 6 prescription medications, and from 1 to 3.4 non-prescription medications. This situation presumably creates a high risk of adverse drug reactions and interactions.

This is bad. It must stop.

The good news? Two days after stopping the drug, Bert was walking just fine, alert, communicative (to the extent he was able) and in excellent spirits. He still thought he was on a ship. And maybe he is on a kind of voyage.