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While its aetiology is not fully understood, open discussions about SUDEP risk—and implementing strategies to reduce it—can help save lives, says Professor Ingrid Scheffer AO, paediatric and adult epilepsy neurologist based at the Austin Hospital and Chair of Paediatric Neurology at the University of Melbourne.
“Often people say you can’t die from epilepsy, but sadly you can,” Professor Scheffer says. “And that mortality risk is present for people with both severe and mild epilepsy.”
The most common cause of premature mortality in people with epilepsy is SUDEP—when a person dies suddenly and no other reason (such as trauma or drowning) can be identified.
“And this is usually where someone goes to bed at night and they’re found the next morning having passed away. And we presume they’ve had a seizure, but usually one doesn’t know.”
Experts do not yet fully understand why it happens, but evidence suggests cardiac arrhythmias and abnormal respiratory function play a role.
SUDEP is thought to affect approximately one in 1,000 people with epilepsy, with 170 Australians losing their lives to it each year.
“It’s really everyone’s worst nightmare, the thought that they’ll lose their loved one. So we’re trying to find strategies to mitigate that risk,” Professor Scheffer says.
All people with epilepsy have a lifelong risk of SUDEP, but young adults (particularly males) with frequent tonic-clonic seizures are most at risk, Professor Scheffer says.
This may be related to medication non-adherence, which peaks in this age group, she says.
Other risk factors include:
Children with developmental and epileptic encephalopathies are also at heightened risk, she says.
“These children with the most severe epilepsies usually have many seizures a week, even sometimes many a day, and some even many an hour. So you can see why they would be at higher risk.”
Talking about SUDEP can be difficult, but people need to know it could happen, Professor Scheffer stresses.
“I find some families are aware there’s a risk, but sometimes they have no awareness of this risk at all. So it’s really important that clinicians routinely discuss the risk of SUDEP with all individuals with epilepsy.”
Understanding the risk can help reduce shock and guilt should it occur, she says.
“I remember a 21-month-old little girl who was admitted here with me at the Austin in Melbourne. We had her in for a week to characterise her seizures and her epilepsy. And then about six months later, she had SUDEP. And her parents said they were so relieved I’d spoken to them about it because they knew it was a possibility, even though they never wanted it to happen, of course.”
These conversations need to be handled with care, she adds.
“Obviously this can’t be a rushed discussion. You need to have time and sensitivity. Understandably, families will often cry when you discuss SUDEP, and you have to be aware that this is extremely distressing to discuss.”
“It’s worth maybe starting with, have you been worried that they’re at risk of dying from their epilepsy? What I usually say is many people tell them that you can’t die from epilepsy, but actually you can. We know it has a very low but definite increased risk and can occur in several different ways. The most frequent one is sudden unexpected death in epilepsy, or SUDEP, where the patient, be they a child or adult, is found to have passed away in the morning.”
To help guide these conversations, Epilepsy Action has SUDEP and seizure safety checklists for healthcare professionals. Originally developed in the United Kingdom, these have been tailored to the Australian context by a team of experts, including Professor Scheffer.
Nurses on the National Epilepsy Line (1300 37 45 37) can go through the checklist with patients, saving GP time, she adds.
Better seizure control reduces the risk of SUDEP, so medication adherence is critical—and can be particularly challenging in adolescents and young adults, Professor Scheffer says.
“One of the problems for adolescents and young adults is that they want to ‘be normal’ and not have epilepsy, so they may stop taking their medication. And that’s a really big issue.”
To promote adherence, Professor Scheffer recommends using a dosette box.
The young person can fill it with their antiseizure medicine pills for the week, and the family can agree upon ground rules for when parental intervention, such as reminding the young person, is acceptable.
For example, “say they leave the house at quarter to eight in the morning, the parent can’t nag the adolescent till 7.30. And that means the adolescent has control. If they take their drug on time, then they miss out on the nagging parent. And that actually helps the adolescent to take responsibility.”
“And the parent can then look at the dosette and check that the adolescent has taken it. And that puts the parent’s anxiety to bed.”
While parents can think it’s ‘hip’ to hand over responsibility for medications to younger children, this is best left until their brains are developed enough—usually from about the age of 15, depending on the maturity of the adolescent, Professor Scheffer says.
Ongoing surveillance is also key to good seizure control, Professor Scheffer stresses.
“You can’t just rest back on your laurels and say, oh, a few seizures are okay, because they’re not. And one has to be very careful to ask the right questions – not just, oh, you’re seizure free, because they may be having little jerks or more subtle seizures that no one has recognised.”
Every patient with epilepsy should be under the care of a neurologist, Professor Scheffer says, emphasising that epilepsy management is very complex.
“I see my fully controlled adults at least every two years to ensure things are stable. And they look to that appointment as a means of asking whatever they’re worried about, unless they need to contact me more urgently which of course they do. The other thing is we have new drugs all the time becoming available, so what they were on 20 years ago we may be able to improve on now if seizures are ongoing.”
What should you do if a neurologist discharges your patient?
Professor Scheffer suggests you could say, “I’d like to make sure they stay under your care. Could they come back in two years?”
Adults with epilepsy who sleep with a partner have a lower risk of SUDEP, Professor Scheffer says.
“And I don’t think we know why that is the case. But it’s certainly an interesting and consistent observation.”
Cameras are increasingly used to monitor children with epilepsy and alert parents to seizures, although it is not yet known whether this prevents any deaths.
Helpful resources
Epilepsy Action Australia has SUDEP resources for patients and healthcare professionals.
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