Do doctors have a role to play with regard to SUDEP?
The risk of SUDEP, while relatively small, is nevertheless real. We believe it should be discussed openly by doctors with patients and their families. Frank and reasoned discussion may improve compliance with medication and lifestyle regimens. It may also prevent the family feeling betrayed by the doctor should a sudden death ever occur. “Why weren’t we told?” is a common reaction of family members bereaved by SUDEP. Most victims of sudden death syndrome are found to have sub-therapeutic blood levels of anti-epileptic drugs. It is prudent to try to predict those who might be most susceptible to SUDEP, particularly young people aged 20 to 40 with uncontrolled epilepsy. Occasionally, there are preceding emotionally stressful events. It may be beneficial for these patients to be seen with increased frequency during this period and compliance assessed more frequently. If a SUDEP death should occur, we believe it is important that it be formally identified as SUDEP. In addition to informati
