Epileptics May Fear to Confide in Docs

June 11, 2002 -- Would you tell your doctor about a potentially serious medical condition if it meant losing some of your independence?

If you had epilepsy, there's a good chance you would not, a trio of prominent physicians suggests.That's because of laws on the books in six states that require physicians to report epileptic drivers to licensing authorities.

"Patients with driving restrictions often lose their independence, have difficulty maintaining social contacts, and experience reduced self-esteem," contend Drs. Wally Lee and Tim Wolfe of the University of Utah School of Medicine in Salt Lake City and Dr. Scott Shreeve of the University of Arizona School of Medicine in Tucson.

"As a consequence, physician-controlled driving restrictions discourage honest patient-physician communication with regard to seizure activity," they write in this month's Annals of Emergency Medicine.

Only one-quarter of drivers who experienced seizures within the last year reported them to their doctors for fear of being reported, they said. This lack of reporting may be placing people at greater risk for causing accidents. Anywhere from 1.5 percent to 5 percent of the population may have a seizure in their lifetime, while 0.5 percent have a diagnosed seizure disorder.

Better Treatment, Better Drivers

While epileptics have a higher risk of crashing than those without medical conditions, they actually have a lower risk of accidents relative to other medical conditions such as Parkinson's disease or migraine headaches, which are not subject to mandatory reporting.

"One real important factor in determining whether you are going to crash or not is whether you are going to have a seizure," says Dr. Gregory Krauss, assistant professor of neurology at Johns Hopkins Hospital in Baltimore. "That is determined by effective treatment."

In fact, in one study conducted by Krauss that looked at risk of motor vehicle accidents amongst seizure sufferers, half of epileptics who have had a seizure behind the wheel will crash their vehicles. Those who had never crashed were more likely to have had their treatments adjusted to their specific seizure activity by a physician.

"The fear is that if people think they are going to be reported, they won't be honest about whether they are having seizures and so [physicians] won't be able to adjust their medicines properly," explains Krauss. "People are going to tend to work less well with you if they feel they are going to be reported."

‘An Arguable Point’

Experts stress that the issue is not that epileptics should drive without regard to their medical condition, but that laws should be fair and reasonable.

All states have some medical requirement — usually an interval of time spent seizure-free — that must be met before an epileptic is given the green light to drive.

"Frankly, if there were data out there showing lower accident rates in places that do have mandatory reporting, maybe there would be evidence to have a different point of view. But actually the evidence doesn't support that at all," says Alexandra K. Finucane, vice president of legal and government affairs at the Epilepsy Foundation of America in Landover, Md.

But some disagree over what is the best approach to assuring the safety of epileptic drivers behind the wheel, a chief reason why some states still have mandatory reporting laws despite vocal opposition.

"It's an arguable point," says Krauss. "For instance, this year in Maryland there have been six fatalities where patients with epilepsy in three different crashes killed people."

Yet even with more flexible reporting laws, there will still be some individuals who choose to drive against their doctors' advice. That's why many states have laws that allow physicians to report such reckless behavior without immunity.

The hope is that removing the barriers to good patient-physician dialogue will ultimately reduce the number of people driving with potentially deadly but preventable seizures.

"We believe that when laws are fair and individualized, people are much more likely to follow them and to get proper medical care," says Finucane.