Physician distress when treatments fail. Survey on physician distress when treating persons with drug-resistant epilepsy and knowledge of neuropalliative care

[Display omitted] •An anonymous online survey asked about physician distress due to treatment failures in epilepsy.•Physician distress was common among responders when epilepsy treatments (esp. surgery) failed.•Less than half (43%) of responders reported confidence in their knowledge about NPC.•The likelihood of referring PWDRE to NPC after treatment failure was low among responders.•Future studies should determine if knowledge of and access to NPC can alleviate physician distress. Drug-resistant epilepsy can be difficult to cure and may pose emotional challenges for epilepsy providers. Neuropalliative care (NPC) can augment quality of life (QOL) in persons with neurological diseases and may add meaningful elements to the treatment repertoire of epilepsy specialists even if seizures continue. However, NPC has not been widely implemented in epilepsy. Our study aimed to determine whether physicians of persons with drug-resistant epilepsy (PWDRE) experience distress when faced with treatment failure (Engel class ≥ 2), either failure of medications-only (PWDREmo) or of both medications and surgery (procedures with curative intent (PWDREms)). Furthermore, we evaluated physician knowledge about and referrals to NPC following treatment failures to help improve patient QOL despite ongoing seizures. An anonymous online survey was distributed to US epilepsy physicians through the American Epilepsy Society website and personal email to assess levels of distress experienced when caring for PWDREmo and PWDREms (7-point Likert scale [“1” = “no distress”, “7” = “most distress ever felt”]), and knowledge and use of NPC. Eighty-two physicians completed the survey. Most experienced distress when epilepsy treatments failed: 59% felt moderate distress (≥4) with PWDREmo (median “4”, mean 3.74, range 1–7), 90% suffered moderate to severe distress (5, 5.17, 1–7) with PWDREms. Distress over PWDREms was significantly greater than distress over PWDREmo (p