Epileptologists infrequently discuss the risk of intubation with patients with epilepsy in the United States

The aim of this study was to assess how frequently epileptologists discuss advance directives regarding intubation and mechanical ventilation with patients with epilepsy. A secondary aim was to understand the attitudes of neurologists toward discussion and implementation of such advance directives in epilepsy care. An online study survey was developed and distributed by email invitation to 210 neurologists at academic epilepsy and neurophysiology programs in the United States in December 2018. Seventy-seven neurologists, 95% with a clinical practice focus of epilepsy in adults, participated in the study (37% response rate). Three percent reported discussion of risk of intubation with "every" or a "majority" of patients newly diagnosed with epilepsy. Seventy-seven percent indicated a neurologist was the "most appropriate provider to have discussions concerning mechanical ventilation with patients with epilepsy." Twenty-five percent "strongly agreed" that "every patient with epilepsy should have an advance directive specifying their preferences concerning mechanical ventilation in the setting of treatment for seizures." A majority favored overriding a hypothetical patient's advance directive specifying no intubation in the context of airway compromise as a consequence of status epilepticus and its treatment. Epileptologists infrequently discuss the risk of intubation and mechanical ventilation with patients with epilepsy. Many felt that such discussions are unnecessary with most patients, but also best led by a neurologist. Neurologists with expertise in epilepsy may favor overriding advance directives in the setting of status epilepticus. Further data is needed surrounding discussion and implementation of advance care planning in patients with epilepsy.