Review of the legal obligations of the doctor to discuss Sudden Unexplained Death in Epilepsy (SUDEP)—a cohort controlled comparative cross-matched study in an outpatient epilepsy clinic

Abstract

This population mirrored the literature and confirmed an absence of risk factors amenable to modification. As discussion of SUDEP with males with localisation-related epilepsy on polypharmacy could not alter outcome it is unlikely that failure to disclose could be causal and hence successful in an action for negligence. Conversely, disclosure, in the absence of the patient seeking the information, may causally adversely affect quality of life hence providing successful action in negligence. Duty of care dictates open and frank discussion with those seeking the information. Thus, each case must be managed individually and doctors are advised to document the decision-making process.

Preferences of Patients for Discussing Sudden Unexpected Death in Epilepsy

“…Most of our patients (61.8%) noted that being informed would cause permanent anxiety, thereby negatively affecting the quality of life, which corresponds to the previously discussed doctor opinions on the effects of being informed (Beran et al, 2004;Vegni et al, 2011;Suna et al, 2015). However, we know from prospective studies that such anxiety will not continue in the long term Tonberg et al, 2015;Xu et al, 2015;Ramachandran Nair and Jack, 2016).…”

“…The main reason not to disclose SUDEP is the caregivers' belief that being informed about the syndrome might cause permanent anxiety or might have a negative influence on the quality of life by causing fundamental lifestyle changes in epilepsy patients (Beran et al, 2004;Vegni et al, 2011;Suna et al, 2015). Contrary to expectations of physicians, studies in epilepsy patients indicate initial anxiety after being informed about SUDEP, rather than a long-standing negative impact after disclosure Tonberg et al, 2015;Xu et al, 2015;Ramachandran Nair and Jack, 2016).…”

Sudden Unexpected Death in Epilepsy (SUDEP): an overview

“…[14,19,20,35] Polytherapy may, however, be a marker of severe epilepsy, and the combined analysis of four case-control studies found no increase in risk with polytherapy when adjustments included GTCS. [28] In fact, a meta-analysis of randomized placebo-controlled clinical trials of add-on therapy with AEDs found the SUDEP incidence to be significantly lower among the patients that were randomised to active AED treatment as add-on compared with placebo.…”

Sudden Unexpected Death in Epilepsy: An Overview

“…However, a study conducted in Australia demonstrated that risk factors for SUDEP are not amenable to modification and in this way, discussion of SUDEP with patients could not alter outcome. Authors consider that information of SUDEP may adversely affect patients and families quality of life and suggested that an open and frank discussion of SUDEP risk should be reserved to those patients that seek the information (Beran et al, 2004). The mechanisms underlying SUDEP are unclear, and there are no effective preventative therapies (Brodie & Holmes, 2008).…”