Should all patients be told about sudden unexpected death in epilepsy (SUDEP)? Pros and Cons

Despite being a relatively rare event, sudden unexpected death in epilepsy (SUDEP) can tragically cut short a young person's life, particularly if seizures are not well controlled or when concordance with the antiepileptic drug regimen is less than optimal. Both the Scottish Intercollegiate Guidelines Network (SIGN) and the UK National Institute of Clinical Excellence (NICE) recommend universal discussion of SUDEP and support the view of one of the authors (MJB) and that of the Joint Epilepsy Council of UK charities that patients and their families have the right to know about the risks of epilepsy and the reasons for treatment. However, the risk of SUDEP is not uniform across all patient populations. Most people with newly diagnosed epilepsy will stop having seizures, and SUDEP is very rare among them. The highest risk groups are those with a young age of onset, frequent generalized tonic-clonic seizures, and medical intractability. The mechanisms underlying SUDEP are unclear, and there are no effective preventative therapies. It is the contention of the other author (GLH) that it is not necessary, or advisable, to discuss SUDEP with all patients. Rather, he contends that SUDEP should be discussed only with those patients who are at high risk. In particular, patients who have generalized tonic-clonic seizures and who are non-compliant with antiepileptic drugs should be counseled about their risk-taking behavior. Both authors agree that additional studies into the pathophysiology and prevention of SUDEP are urgently needed.