The Silent Issue: Epilepsy as a Cause of Death

It's not a topic people like to think about. But epilepsy can be a fatal disorder.

Posted: January 1, 2002

It doesn't happen often. It's hard to know the risk. It's not a subject people want to dwell on.

But the fact is, epilepsy is sometimes a fatal disorder. People may die as a result of accidents due to seizures, during a prolonged seizure, by their own hands, and - perhaps most shocking of all - suddenly and unexpectedly and for no apparent reason.

The extent of the risk, and how individuals and families should be made aware of it, were discussed at length during a crowded session entitled The Silent Issue, Epilepsy as a Cause of Death, part of a recent Epilepsy Foundation conference.

"It took me to the sixth year in my practice, where I have lost four patients to SUDEP [Sudden Unexplained Death in Epilepsy]," said Sandra Clements, R.N., M.N., "to realize the importance of working very, very, hard to make certain that I convey to patients that epilepsy does maim and kill.

'Little Deaths'

"I call the traumas associated with seizures little deaths," Clements said. "And, those are the lacerations, contusions, skull fractures, broken bones, burns - it is not a pretty sight. I think patients experience loss every time that happens.

"It's sort of new to them all over again when they have those kinds of injuries. So whatever we can do to make a difference in those areas, we need to do."

Given the risk of accidental injury or death, the best thing that health care professionals can do for patients, Clements said, is to offer as many options as possible to try to control seizures.

"Our goal for you is for you to be seizure free," she continued. "That means zero. Nada. None. Zip. No seizures."

"We know that between 40 to 50 percent of deaths of people who have epilepsy are related to epilepsy. We know that children, for instance, who have epilepsy, have four times greater risks for drowning accidents," said Braxton Wannamaker, M.D. "Thirty percent of people who drive cars and have epilepsy report that they have had seizures while driving. And 50 percent or more of those who drive, have at some time had an accident related to seizures.

"There's something worse than death," Wannamaker said. "It's the fear of death. And if we don't understand what we're talking about, understand that may be something that we have to deal with, we'll never really figure it out and we'll go on where we are now."

Death from Accidents

Death due to accidents, he said, also occurs. A doctor can predict, to some degree, who might have an accident by looking at the type of seizures (most of these are during generalized tonic clonic seizures) and the severity of seizures. But it must be remembered, people can also have complex partial seizures and injure themselves in a number of different ways.

Some patients are at greater risk for SUDEP than others.

"We assume these people may have had a seizure," he said, "but the coroner and the pathologist are not always able to tell us."

What can be done to reduce the risk of accidental death and injury linked to epilepsy?

Using Common Sense

"Basically, you reduce the risk by using common sense," Wannamaker said. "Ask yourself, 'What would happen if I'm doing this and I had a seizure?'"

Wannamaker said he thinks physicians need to be geared up to look at their patients and try to modify their drug regimens so if they have adverse events, which can be precipitants of accidents, physicians can deal with them.

"We must look at the individual patient, how often they're having seizures, what type of seizures, in terms of what we're going to advise them to do or not to do," he continued. "Perhaps we can avoid some of the injuries of patients with epilepsy."

If you look at all the deaths of people with epilepsy, you find that about 42 percent have died because of the epilepsy, he said.

Accidents accounted for about 8 percent of deaths and suicide accounted for about 7 percent of the deaths for people with epilepsy. That's about five times the national rate for suicide among the population that does not have epilepsy. Unexplained deaths in epilepsy average between 7 and 17 percent.

Features of SUDEP

The features of SUDEP include no apparent cause; a 15- to 44-year-old age group at risk; a long history of epilepsy with generalized tonic clonic seizures. People who have died this way are frequently found dead in bed. Most are found lying on their stomach, often with sub-therapeutic drug levels.

Sometimes depression and the problems associated with epilepsy lead to a higher than average rate of suicide.

"One of the things I've learned from working in the suicide prevention field for years, is that the group of persons with epilepsy is at a higher risk of suicide than the general public," said Doreen Schultz, a suicide prevention counselor.

Schultz summarized some of the issues that people face and that may add to their depression.

Secondary Losses

"There are a lot of what we like to call secondary losses over the life span of someone who has epilepsy," she said. "Acknowledging those losses is an important part to being able to help people cope with them.

"People with epilepsy may experience many losses over the course of their lifetime," Schultz continued. "And, some of these losses may include not being able to drive.

"I was thinking about how I get around on a daily basis. How I go see my friends. How I go out to dinner. How I go to work. How I get home," she said. "If I wasn't able to do that as easily as I am, how would that affect me?"

Another loss, she said, that some people with epilepsy face, is the anticipation that seizures will limit daily activities. Often, the very anticipation of having a seizure in public may limit what a person does.

Rejection by others and the stigma of the condition are other losses that happen to some people with epilepsy.

When a family has lost a loved one to sudden and unexpected death, Schultz said, there are overwhelming feelings of shock, anger, and disbelief.

Need To Explore Why

"There's also a need to explore the why," she said. "Why did this happen? I've talked to families who have gone above and beyond what most people would have done if their loved one were admitted to a hospital. They want to talk to everyone who had seen the individual. They want to see all of the records. There is this need to explore why this happened.

"When we don't know why, that makes it even more difficult," Schultz continued. "What we see are families trying so hard to put together the pieces of the puzzle. To find out what happened in those last moments."

There are also feelings of guilt and of missed opportunities among the remaining family members when someone dies suddenly and unexpectedly, Schultz said.

Professionals meeting with family members of a person who died suddenly should always respond honestly to questions asked by the family, Schultz said.

"People can handle what they know. What they can't handle is what they don't know."

Schultz emphasized that she encourages families who have lost a loved one to epilepsy, to suicide, or to seizure-related accidents to seek support - whether it be with a therapist or a support group, peers or family members - wherever they feel the most comfortable.

Talking about what has happened, she said, is the first step to healing.