Discussing sudden unexpected death in epilepsy (SUDEP) with patients: practices of health-care providers

Abstract

There is a lack of consensus regarding how health-care providers should address SUDEP with patients. The purpose of this study was to describe various health-care providers' practices regarding discussion of SUDEP with patients. Separate focus groups were conducted with epileptologists, neurologists, and advanced practice nurses. Across all disciplines, reasons for discussing SUDEP included Practical Accountability, Moral Accountability, Proactivity, and Reactivity. For nurses only, an additional reason was Patient Advocacy. In terms of when not to discuss SUDEP, for all disciplines, and especially the physicians, the theme Not at First emerged. Additional themes that emerged for this question included, in the case of neurologists and epileptologists, Moral Accountability and Out of Options. Ways in which SUDEP is discussed included, in all groups, Discussion and Written Materials. In addition, prevalent in all groups was the finding that procedures for discussing SUDEP with patients and families need to be somewhat standardized. Implications for practice are discussed.

Keywords: Epilepsy; Patient education; Qualitative research; SUDEP.