Should Adult Epilepsy Patients Be Told About Unexpected Death Risks?

Elevated Mortality Rates for Veterans Fires Up Debate

A shocking report on substantially higher mortality rates for veterans with epilepsy, as well as new guidelines from key disease groups, have reignited debate on a difficult issue in treating the neurological disorder: How much should epilepsy patients be told about their risks of sudden unexpected death, especially since—as likely with veterans—some of that risk might be unrelated to the condition?

By Brenda L. Mooney

COLUMBUS, OH—A study indicating that recent U.S. veterans with epilepsy were 2.6 times more likely to die over a four-year period than similar veterans without that diagnosis has added fuel to a long debate among clinicians treating the neurological condition.

The title of a session at the American Academy of Neurology meeting this spring said it all: “To Reveal or Conceal? Adult Patient Perspectives on SUDEP Disclosure.” Ohio State researchers took a close look at how much adult patients really want to know about sudden unexpected death in epilepsy patients (SUDEP).1

“The decision to discuss SUDEP with patients and families has created much debate,” wrote the abstract authors. “Many [healthcare practitioners] are hesitant to discuss SUDEP due to the perception of imposing unnecessary patient related fear, while others argue that informing patients about SUDEP may enhance patient compliance, improve seizure control and aide in saving lives.”

In a session at the same conference, newly-released guidelines co-developed by the American Academy of Neurology (AAN) and the American Epilepsy Society and endorsed by the International Child Neurology Association were very clear on their position: Epilepsy patients, especially those with tonic-clonic seizures—should be told of their risk for SUDUP, especially if the knowledge could help reduce that risk. (See sidebar, pg. xx).2

“The extent to which clinicians inform patients of their risk for SUDEP varies greatly,” Mary Jo Pugh, PhD, RN, lead author of the veterans’ study and associate chief of staff for research, South Texas VA Health Care System in San Antonio, told U.S. Medicine. “There is some controversy in the minds of some about the value of this education. My interviews of clinicians in and outside of VA over the past week suggest that some don’t because there is nothing that can really be done about it. Others have had their opinions changed over the past five years or so. They now include a discussion of SUDEP in the first or second visit in part to encourage medication compliance.”

Interestingly, the research earlier this year in the Morbidity and Mortality Weekly Report on veteran death rates emphasized that the role of SUDEP wasn’t clear in that situation and would require further study.3

“Similar to studies of civilian samples, we found that cancer, stroke and cardiac disease were strong predictors of five-year mortality. But, even after controlling for the impact of these comorbid conditions, we still found a substantial effect for epilepsy,” Pugh noted when that study was published.

She added that, because federal databases at the time the study was conducted did not include causes of death, the report does not speculate on whether mortality was linked to suicidality, car accidents, heart attack, cancer or SUDEP.

Despite that, SUDEP remains a serious concern and the topic of much research and discussion. Another study published this year in the journal Epilepsia noted, “All population-based studies reported an increased risk of premature mortality among people with epilepsy compared to general populations.”4

That Emory University-led study added, “Standard mortality ratios are especially high among people with epilepsy aged <50 years, among those whose epilepsy is categorized as structural/metabolic, those whose seizures do not fully remit under treatment, and those with convulsive seizures. Among deaths directly attributable to epilepsy or seizures, important immediate causes include sudden unexpected death in epilepsy (SUDEP), status epilepticus, unintentional injuries, and suicide.”

In the survey conducted by Ohio State University, meanwhile, all of the respondents said that adult epilepsy patients have the right to know about their higher death risk. For that study, 42 patients with epilepsy (PWE) completed a questionnaire based on an information sheet promoted by the National Epilepsy Foundation of America.

Results indicate that 100% responded that adult PWEs had a right to know about SUDEP and 92% felt that HCPs should be required to inform patients.

Despite concerns that the knowledge would frighten them unnecessarily, respondents said instead that SUDEP awareness motivated them for better medication adherence (81%) and management of their seizure triggers (85%). Fear appeared to be more prevalent in the group with generalized tonic clonic seizures, study authors noted.

Some physicians are more likely than others to inform patients, Pugh said, adding, “My VA colleagues unanimously say that patients should be educated on SUDEP and that they personally do that. The issue is that they are epilepsy specialists. Many veterans with epilepsy do not see epilepsy specialists due to the small number of those specialists in (and outside) the VA.”

1 2

Share Your Thoughts