SUDEP revisited – A decade on: Have circumstances changed?

• Doctors are unlikely to be found negligent for not discussing SUDEP with a patient.
• Doctors are encouraged to discuss SUDEP when they feel it is necessary.
• Doctors are encouraged to discuss SUDEP with patients who ask about it.

PurposeA paper, published a decade ago, endorsed doctors’ right to avoid discussing Sudden Unexpected Death in Epilepsy (SUDEP). It did not negate discussion, advocating same where appropriate. This paper investigates the current situation to identify any changes.MethodsThe tort of negligence includes a duty to discuss “material risks” and adhere to accepted practice. Within the last decade, “material risks” for SUDEP have not altered significantly and international practice discusses SUDEP with those patients who seek advice or in whom such discussion is designed to improve patient compliance.ResultsDoctors are unlikely to be found negligent for not discussing SUDEP, acknowledging a push encouraging same, despite it being contrary to routine practice in the US, Italy, UK and elsewhere. Doctors should continue to practice the “art of medicine”, discuss SUDEP when warranted and with patients seeking such advice. They must warn about risks, such as bathing alone, avoiding accident and injuries and possibly SUDEP in non-compliant patients and also consider the impact of such discussion. With no ‘material’ changes in the last decade, doctors must recognise when to discuss SUDEP, with which patients and in what context, accepting it may have a negative psychosocial impact on family dynamics unless discussed in a culturally competent fashion, to avoid causing additional stress for families where accepting the diagnosis of epilepsy may already prove difficult.ConclusionHaving formed a therapeutic relationship with the patient, discussion of SUDEP should be considered within that context, acknowledging the “art of medicine” and the implications of such discussion, similar to the situation a decade ago.