Epilepsy killed Christopher Donalty, and as sure as his mother Jeanne Donalty is that the 21-year-old student athlete from Utica, N.Y., died too young, she is even more certain that the failure of his physicians to be frank with the family about the potential risk—albeit rare—of fatality linked to the disease contributed to his death.
“Patients need to know that they can die from epilepsy,” Mrs. Donalty stressed in a press conference about Sudden Unexplained Death in Epilepsy (SUDEP) at the annual meeting of the American Epilepsy Society held this week in San Antonio. “If we had known, if Chris had known, he might be alive today to tell his own story.” Instead, his mother travels the country on behalf of Citizens United for Research in Epilepsy (CURE) delivering the message that her son cannot.
Christopher died in his bed, surrounded by his textbooks, in 2002, just months before he was set to graduate with honors from Florida’s Stetson University. Diagnosed with epilepsy before his senior year in high school – eight years after suffering his first seizure of unknown etiology in fourth grade and four years after a similar second seizure in eighth grade – Christopher was able to manage his seizures successfully with phenytoin (Dilantin) until his sophomore year in college. A breakthrough seizure early in his sophomore year led to the short-lived addition of valproic acid (Depakote) to his therapy regimen, which was discontinued after a few months because of intolerable side effects.
Even without the Depakote, Christopher was seizure free—or so his family and physician believed—until his death. In fact, Christopher had experienced seizures during that period, “but he didn’t tell us about them and he didn’t tell his doctor,” Mrs. Donalty explained. She hypothesized that her son’s desire to live a “normal” life not defined by epilepsy and its restrictions led to his silence. “We will never know for sure why Chris didn’t tell us about the seizures, but I do know for sure that he loved life, and if he knew that uncontrolled seizures could kill him, he would have made different choices,” she said. “The possibility of death was never once mentioned to us after his diagnosis or in the years of treatment [that followed.] We believed epilepsy was a benign, manageable disease.”
In the years since her son’s death, Mrs. Donalty has learned that many physicians never tell their patients about the possibility of SUDEP, despite the fact that it is estimated to account for 8%-17% of deaths in people with the disorder and occurs at a rate of approximately 1 in 1,000 person-years, when combining all epilepsy types and severities, and increases to 1 in 150 person-years for those with refractory epilepsy (Lancet Neurol. 2008 :1021–1031; Epilepsia 2009 :917–922). “I don’t know why this is. Maybe it’s because there is no cure, or because it’s a difficult conversation,” Mrs. Donalty said. The failure to communicate the risk, however, is “unethical,” she stressed. “Doctors have no right to deny patients and their families the full story. There’s nothing worse than losing a child. But I think it’s particularly cruel when you don’t have the information that you should have had to make informed decisions.”
Neurologists Dr. Dag Aurlien of Stavanger University Hospital, Stavanger, Norway, who reported a study at the meeting about the incidence of SUDEP associated with lamotrigine therapy, and Dr. Jakob Christensen of Aarhus University Hospital in Aarhus, Denmark, who presented new data on mortality in epilepsy agreed with Mrs. Donalty’s position. “It might not be a discussion to have at the time of the initial diagnosis, but it is a discussion that has to happen,” Dr. Aurlien said in an interview. The fear of overdramatizing the risk may be behind physicians’ hesitancy to bring it up, he hypothesized.
Dr. Christensen agreed that no information, including the possibility of death, should be withheld from patients and their families. “In our [clinic] it is part of the checklist of information that should be communicated,” he said in an interview, noting that patients’ individual situations and risk factors should help guide when and how the information is offered. —Diana Mahoney