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

INTRODUCTION Acknowledging informed consent and warning of material risk, the present study examined the current debate regarding early discussion of Sudden Unexplained Death in Epilepsy (SUDEP). It sought to confirm the profile of those prone to SUDEP and to determine the basis for disclosure to patients. METHODS Patients with SUDEP attending an Australian outpatient epilepsy clinic between 1985 and 2000 were compared to an age, gender and epilepsy type cross-matched control group to ascertain risk factors for SUDEP and similarities to published parameters. These were evaluated as the basis for actions in negligence for either disclosure or failure to disclose. RESULTS Twenty-one SUDEP patients were identified: aged 18-70 years; the majority had localisation-related epilepsy (13:8, 62%); male to female ratio was 3:1; and 15/21 used polypharmacy, compared with 8/21 controls (P = 0.02951). Handedness, alcohol use or deterioration of epilepsy were unrelated. DISCUSSION 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.