Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy

• Over half of respondents were unaware that epilepsy could be fatal.
• For many, the epilepsy-related death had not been adequately explained to them.
• Improved education and participation in risk-discussion is required.
• Epilepsy-specific information and bereavement support is needed over time.

PurposeThis study explores the experiences and needs of bereaved family and friends following an epilepsy-related death in Australia.MethodAn online survey was used to collect demographic details of the person with epilepsy, epilepsy status, time since the death, satisfaction with service providers at the time of death, follow-up support, perceptions on how well the death was explained, and gaps in support or services.ResultsThe survey was completed by 101 respondents describing 90 deceased individuals. Mean age at death was 32.1 years, with causes of death including SUDEP, epilepsy, drowning, cardiac arrest, asphyxiation, and motor vehicle accidents. Over half of the respondents indicated that they did not know, prior to the death, people could die of epilepsy. In addition, 38% indicated the death had not been adequately explained to them. Comments revealed services and supports which should be available following a death, and recommendations for existing epilepsy support services which might help to prevent future deaths.ConclusionFindings highlight the need to improve community understanding and support for those affected by epilepsy and to promote informed risk assessment and communication amongst patients, families and health professionals. People bereaved by epilepsy require both immediate and long-term epilepsy-specific information and support from professionals, informal communities and peer supporters.