SUDEP: The Need for Global Conversation

Epilepsy-related deaths have been portrayed throughout history as the sad and perhaps inevitable outcome of a devastating medical condition. However, since the late 20th century, as medical care has improved, epilepsy has been increasingly perceived as a manageable and almost benign diagnosis. Risk of epilepsy-related deaths has taken a lower profile. When deaths occur in this framework, they are rarely expected, and the deaths create enormous distress for those who are bereaved. Families are left not only with grief, but also regret for their lack of awareness that epilepsy can be life threatening.

In the 1990s, several United Kingdom families publicly expressed their shock at discovering there was no medical explanation for many epilepsy deaths. In such cases, the term "sudden unexpected death in epilepsy" (SUDEP) was applied. Forensic evidence did not support the assumption that asphyxiation during a seizure was a common cause for unexpected deaths, and research into this tragic phenomenon was virtually non-existent. A public debate began with speculation regarding: possible scientific explanations, the number of people affected, and the risk factors involved. There was concern as to how these issues should be presented to people with epilepsy. Against this background, resources were needed to inform bereaved families, people with epilepsy and health professionals about SUDEP. In 2005, Denise Chapman and I, with the support of colleagues and SUDEP Action, published SUDEP: A Global Conversation. The book included research, medical, political and personal opinions about SUDEP. The book was a gesture of hope, intended to promote constructive global discussion in a comprehensive and inclusive sense. Medical and social scientists, epidemiologists, bereaved families, health professionals, and policy makers all hold pieces to the SUDEP puzzle. Their participation is vital.

The total number of people struck by SUDEP has only been estimated. Differing international approaches to the recognition and certification of deaths hamper precise determination of the incidence of SUDEP. The general scientific opinion is that the incidence of SUDEP is currently still underestimated. The international epilepsy community must collaborate to interrogate existing data and establish accurate public messages about SUDEP. The objective of this effort should be to inform and raise awareness, and not to generate anxiety about SUDEP. SUDEP strikes mostly young people, and the number of years of life lost is great. Therefore, the total number of deaths should not be solely relied upon to characterise the burden of SUDEP.

When SUDEP emerged as a public issue, it revealed many gaps in medical knowledge about the condition. However, this lack of scientific evidence created an unusual vacuum, a space which encouraged diverse voices to speak, stimulating the growth of new initiatives and collaborations. The struggle for solutions has evolved to include not only medical scientific research, but also the scrutiny of epilepsy care. Are there cultural or national differences that engender better or worse outcomes for patients? In the absence of a known cause for SUDEP, when those with frequent seizures carry a higher risk of death, the identification and international application of best practice to prevent seizures is imperative.

The book Sudden Unexpected Death in Epilepsy: Continuing the Global Conversation (2011) celebrates progress in the fight against epilepsy-related deaths. SUDEP has been a catalyst for action not only to reduce death but also to improve epilepsy services and patient participation. It has helped to bring epilepsy out of the shadows. However, too much remains unknown, and many continue to die of SUDEP. These deaths compel us forward with haste, purpose and commitment in the campaign against SUDEP.

Suggested Reading

"Sudden Unexpected Death in Epilepsy: Continuing the global conversation," edited by Chapman D, Panelli R, Hanna J and Jeffs T (2011, Epilepsy Australia Ltd, Epilepsy Bereaved and SUDEP Aware) http://www.sudepglobalconversation.com/

"The National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy: Death in the shadows" by Hanna N J, Black M, Sander JWS, Smithson WH, Appleton R, Brown S, and Fish DR (2002, The Stationary Office) http://www.archive2.official-documents.co.uk/document/reps/nscaerd/nscaerd.pdf