The epilepsy community is striving to change the public discourse about seizures and draw attention to epilepsy as a health problem that can yield serious and devastating consequences. Two years ago, the Epilepsy Foundation, the American Epilepsy Society (AES), the National Centre of Epilepsy Centres, the Centres for Disease Control and Prevention, and the Chronic Disease Directors sponsored a conference, Living Well with Epilepsy II, to craft a comprehensive public health strategy for epilepsy in the United States. Recommendations highlighted the need for greater research and understanding of epilepsy-related mortality, including sudden unexpected death in epilepsy. In particular, recommendations called for identification of risk factors for mortality using incident cohorts, increasing basic science research to understand the pathophysiology of SUDEP and other causes of death, facilitating research by creating databases of autopsy findings, and encouraging the use of brain bank resources.

Conference participants also recognised the lack of knowledge about SUDEP. This lack of knowledge may stem from, and in turn lead to, a serious lack of communication between patients, families and providers about this problem. The epilepsy and public health communities were challenged to change this, calling for increased educational efforts among all audiences and the development of effective interventions and support systems for families who have lost a loved one with seizures.

The Living Well with Epilepsy II Conference highlighted critical gaps in what is known, what is needed, and what is talked about. Unfortunately, these gaps remain and can be seen in the level of concern and questions raised by patients and families, the limited number of educational materials or programs, and the extent of research in this area. The Epilepsy Foundation website (www.epilepsyfoundation.org) reflects public concerns about epilepsy – a large number of people are talking publicly about SUDEP in online community groups, story boards that honor loved ones who have died from seizures, and in general educational articles. The level of discussion was surprisingly passionate, with people searching for answers from anyone who could help. Consumer website information identifies some risks of seizures, but tools to help patients and families assess their risks are still lacking. These concerns are repeated in many clinical practices across the country as families of people who have died from SUDEP question why they were not forewarned of this risk.

On professional websites, the discussions are much quieter. The American Association of Neuroscience Nurses’ website has limited content addressing epilepsy, and nothing that addresses SUDEP. A review of the professional journal contents over the past three years reveals a similar lack of attention. This lack of information could pertain to the fact that this is not an epilepsy-specific organisation and SUDEP may not be perceived as a critical educational need for their members. It could also mean that nurses are not comfortable discussing this area or do not have the expertise to address it.

To examine this facet further, the website of the American Epilepsy Society was examined. What SUDEP information existed was unfortunately limited and not readily available. For example, archived abstracts for 2000-2003 yielded only 23 addressing SUDEP in some way, yet over 100 on mortality in general. There were no nursing abstracts addressing care or support of patients and families coping with death from epilepsy. Excellent articles exploring the scope and known risk factors of SUDEP were found in the AES journal,Epilepsy Currents, but SUDEP was not included in the educational program for medical residents and nurses. Additionally, SUDEP has not been a topic of a major plenary in recent years. Educational teleconferences offered to AES members and non-members (including nurses, social workers, psychologists, or pharmacologists) have not addressed SUDEP or mortality. These findings were surprising and suggest that we are not educating our colleagues about one of the main concerns for people with epilepsy.

Despite the questions raised by people with epilepsy and their families, some health care professionals question whether they should tell people about SUDEP for fear of worrying them needlessly. Professionals struggle with how to address these safety and mortality risks while balancing concerns of overprotection. Educational efforts also suffer from not knowing what preventive strategies, if any, should be stressed.

This brief perspective on SUDEP focused on the gaps in research, education, and communication. To eliminate these gaps, nurses and other caregivers who are on the ‘front line’ must be given education and resources to address patient and family needs appropriately. Nursing and other behavioral science researchers must also develop research agendas that will examine their role in death and epilepsy, and identify strategies for risk assessment and prevention, health promotion and communication, and coping.

Patricia Osborne Shafer
Epilepsy Nurse Specialist, Beth Israel Deaconess Medical Centre
Boston, Massachusetts

Joan K Austin
Distinguished Professor, Indiana University School of Nursing
Indianapolis, Indiana

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.