One of the emerging topics in epilepsy research and care is Sudden Unexpected Death in Epilepsy (SUDEP), defined as the sudden and unexpected death of an otherwise healthy individual with epilepsy. Researchers are just beginning to understand what SUDEP is and how frequently it occurs, but as more research is conducted, more questions are emerging. What causes SUDEP? How do we predict SUDEP? Are there ways to prevent it? Should healthcare providers inform people with epilepsy about SUDEP if we don’t know ways to prevent it?
A recent study by Dr. Rajesh RamachandranNair and colleagues addressed the question of what information should be given to patients and their families about SUDEP. One-on-one telephone interviews were conducted with 27 bereaved relatives who lost a loved one to SUDEP. They all agreed that the benefits of knowing about SUDEP – which may include better epilepsy management and lifestyle changes – outweighed the potential fears and anxiety that may come from knowing about it.
But how can healthcare providers deliver information about SUDEP? In this study, bereaved relatives felt as though the information should be provided at the time of diagnosis or shortly afterwards. The discussion should highlight important facts about SUDEP, such as a general explanation of SUDEP, the risks of SUDEP and how rare it is, how to minimize one’s risk, and where to get additional information and support.
Bereaved relatives also mentioned the importance of having the SUDEP conversation with a neurologist, as he/she is a leading expert in epilepsy care and has a relationship with the patient and their family. It was recommended that social workers and nurses also be on hand for any follow-up questions or support the patient and/or their family may need.
In summary, relatives who had lost a loved one to SUDEP highlighted the importance of discussing SUDEP early, so that patients and families can make informed decisions about care. EpLink plans to work with neurologists and Community Epilepsy Agencies to increase awareness and education about SUDEP and guide healthcare providers on how to discuss this topic with compassion and sensitivity.