Avoiding parental distress when discussing about SUDEP: the Albanian experience

Pediatric SUDEP (Sudden Unexpected Death in Epilepsy) is an uncommon event, but its unpredictability has rendered the issue very important to be addressed, under all points of view: medical, moral and legal one. The death of a child has been always considered a dramatic event for the Albanian families, and when it overcomes unexpectedly the emotional reactions might even be more exaggerated.

Debates about truth-telling on the prognosis, or even on the probability of a sudden death related to the main diagnosis (epilepsy) are old and controversial. Risk factors for SUDEP have been formulated and strategies to confront them have been put in place; however medical (pharmacological) compliance seems by large the most important protective factor.

To our opinion, disclosing the risk of a sudden death to the family on a child suffering from epilepsy is a necessary act; timing and ways of disclosure are details that need to be refined case-by-case, in a situation where a general consensus or guidelines are lacking. A step-by-step approach and a gradual informing are helpful and psychologically acceptable from the parents or other relatives.