The view of the clinician and the scientist on the family experience of sudden epilepsy deaths

Abstract

A sudden epilepsy-associated death is a tragedy for the bereaved, a failure for the clinician and a challenge for a research scientist. Sudden death in epilepsy cannot be truly anticipated or prepared for by the bereaved, or the clinical team. Communications and provision of pastoral care following sudden unexpected death in epilepsy (SUDEP) is an important part of an epilepsy service where interaction with the family and specialist services for the bereaved can be rewarding. Sudden death and SUDEP are valid targets for research attention, but families may be less aware of opportunities to assist in life science research or conversely feel coerced at a vulnerable time. We have a responsibility to ensure that the SUDEP risk is minimized and that we maximize the learning potential from each death. Out of such tragedies some good must come, but this will take combined efforts from doctors, families, and the voluntary sector acting in league with scientific and academic funders. In this review, we set out to consider the dual viewpoints of the clinician and the scientist and how they consider the family experience of sudden deaths to provide advice for all parties. "This paper is for the Special Issue: Prevent 21: SUDEP Summit - Time to Listen".

Keywords: Communication; Epilepsy death; Family; SUDEP; Scientist.