Death in epilepsy: is it preventable?

The risk of premature death is higher in people with epilepsy, but many other factors have a potentially bigger role than epilepsy and its treatment. Most people with epilepsy will not die as a direct result of their epilepsy, but as a result of the underlying disorder causing epilepsy and of comorbidity, both somatic and psychiatric. Death in epilepsy is preventable. All patients require accurate diagnosis and optimal seizure control, treatment of the underlying cause when possible, minimising treatment side effects and maximising compliance. Comorbidities need to be recognised and treated. For optimal outcomes, we need to listen to our patients, and to all people we care for. Neurology Asia 2013; 18 (Supplement 1) : 15 – 17 Address correspondence to: Dr John Dunne, Department of Neurology, Royal Perth Hospital, Perth, Western Australia. INTRODUCTION The risk of premature death is higher in people with epilepsy. The standardised mortality ratio (SMR), the ratio of observed number of deaths in a condition and the expected number of deaths in the general population, is 2-3 for epilepsy. Many other medical conditions have similar increases in SMR, for example asthma and ischaemic heart disease. Morbidity and mortality in epilepsy may be due to the underlying cause/process, epileptic seizures themselves, comorbidities and external infl uences, including treatment. Most people with epilepsy will not die as a direct result of their epilepsy, but as a result of the underlying disorder causing epilepsy and of comorbidity, both somatic and psychiatric.1-3 Somatic comorbidities include pneumonia, cerebrovascular disease, malignancy and heart disease. DIRECT EPILEPSY-RELATED DEATHS Direct epilepsy-related deaths are infrequent, and are more likely with remote symptomatic epilepsy, increasing frequency and severity of seizures, and with poor antiepileptic drug (AED) compliance. Status epilepticus occurs in 5% of adults and more children with epilepsy, and has a 5-20% mortality, mainly determined by the underlying cause and age. Fatal accidents and drowning may be caused by seizures, with 6% of deaths in epilepsy due to accidents. Seizures may also cause fatal aspiration pneumonia (SMR 6.6). SUDDEN UNEXPECTED DEATH IN EPILEPSY (SUDEP) SUDEP has received increasing attention in recent years. SUDEP may be defi ned as sudden, unexpected death in a person with epilepsy that is not due to any known causes, but for which there is often evidence of an associated seizure. Rather than a cause of death, SUDEP is a description of a clinical scenario with several possible mechanisms, including seizure-related fatal cardiac or respiratory dysfunction. SUDEP accounts for about 4% deaths in patients with epilepsy, higher in refractory epilepsy. Whilst is the most important direct epilepsy-related cause of death in middle age, it remains very uncommon, with a mean annual incidence of 3-4/1000 patients/year. The possibility of SUDEP does not alter the goals of epilepsy management: to optimise seizure control and maximise AED tolerability and compliance. No data indicate that any other clinical strategy will prevent SUDEP. A single case-control study from UK suggested that ongoing nightly supervision might be protective for people with severe epilepsy living in the residential care facilities. This suggestion, if verifi ed, is not relevant or possible for most people with epilepsy, given the importance of independent living and the penalties of intrusive monitoring and living in fear.