Sudden unexpected death in epilepsy: patients informed on an 'as needs' basis

Most UK neurologists do not adhere to guidelines that recommend sudden unexplained death in epilepsy (SUDEP) be discussed with all patients, and tend to raise the issue only when there is a perceived need, according to a recent survey. Recently-published National Institute of Clinical Excellence (NICE) guidelines recommend that patients with epilepsy and their families be given information on SUDEP. However, authors of a recent survey say some neurologists argue that a blanket policy of informing all patients about the issue will needlessly cause anxiety, as it's not possible to predict or prevent SUDEP.The authors conducted a survey of current practice among neurologists listed on the Association of British Neurologists database, asking under what circumstances they told patients about SUDEP. A total of 387 of 738 questionnaires were returned; the results showed that around 5% of respondents discussed SUDEP with all patients, 26% with the majority, 61% with a few, and 7.5% with none. Around 47% of respondents believed that knowing about SUDEP would not have any effect on patients' quality of life, and a third of respondents thought that the information would cause anxiety. The majority also thought that informing patients about SUDEP did not improve drug compliance or avoidance of risk factors.Neurologists who had a special interest in epilepsy were more likely to tell patients about SUDEP, and those who discussed SUDEP with all or most of their patients were less likely to report negative reactions from their patients than those who did not. This may reflect the fact that the neurologists who commonly discussed the issue were more at ease doing so, which resulted in a milder patient response, or that negative patient reactions served to inhibit some neurologists from discussing the issue more frequently.Although medical opinion leaders and patient advocate groups maintain that people must be given as much information as possible, the authors say, "This stance denies the patient the right not to know, and undermines the physician's ability to treat patients as individuals." The authors conclude that, although the practice of discussing SUDEP on an as-needs basis may be out of step with current guidelines, it "reflects what every doctor knows: that patients differ vastly in their need for information."Reference...