e-1888 (Sudden unexpected death in epilepsy)

Petition to the Minister of Health

• Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely, and no cause of death is found;
• SUDEP is a serious concern to our approximately 300,000 (or 1 in 100) Canadians living with epilepsy;
• Studies estimate a loss of 1 in 1000 people with epilepsy per year, with the rate approaching 1 in 100 per year in people with frequent seizures that are poorly controlled with medications;
• Main barriers to collating accurate statistics for Canada include a lack of awareness about SUDEP and variances in the investigation and recording of SUDEP deaths across the different provinces;
• SUDEPs most often occur during sleep and are unwitnessed, so researchers rely heavily on death certificate content (for case identification) and depth of autopsy/medical notes (for case investigation);
• With no consistent reporting requirement across Canada, or national SUDEP database, the completeness of the data is uncertain; and
• Diagnosis of ‘definite SUDEP’ requires the exclusion of other causes of death by autopsy, yet neither conducting an autopsy nor enquiring about possible epilepsy history (even in the absence of seizure evidence) is a mandatory requirement in epilepsy-related sudden death investigations across all provinces.