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Researchers suggest delay in telling epilepsy patients about sudden death risks

11 May 2006

Researchers have
suggested that doctors should discuss the risk of SUDEP (Sudden
Unexpected Death in Epilepsy) with people with the condition when
treatment fails or is refused, and not tell them when newly-diagnosed.

In the new study, published in the journal The Lancet Neurology, researchers from the Western Infirmary in Glasgow reviewed the case of people with epilepsy who had died from SUDEP.

researchers explained that substantial debate surrounds the issue of
whether and when to discuss the increased risk of premature death in
people with epilepsy. While it is accepted that doctors have a
responsibility to fully discuss any risks associated with a condition
and its treatment, some have argued that the patient has a right not to
know. Most people with epilepsy can become seizure-free with the right
treatment and, therefore, would not be at increased risk of premature
death from their epilepsy. The researchers added that giving
information about risk to life from seizures has the potential to cause
harm, for example through unnecessary anxiety.

Researcher Rajiv Mohanraj said:

study assessed mortality in patients with newly diagnosed and chronic
epilepsy from the same population source and attending the same
clinical service for up to 20 years, making these data especially
useful to clinicians who wish to broach this issue with their patients."

with newly diagnosed epilepsy who did not respond to treatment had
increased mortality compared with the general population, but there was
no rise in mortality rates in those who became seizure-free at

The researchers added:

light of our results, routine discussion of mortality at the time of
diagnosis might not be necessary, especially if this does not affect
the management of the disorder. However, mortality risks should be
discussed with all patients diagnosed with epilepsy who choose not to
take anti-epileptic drugs'.