Objectives Controlling seizures in children approaching death can be difficult, and there is a limited evidence base to guide best practice. We compared current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM).

Methods Retrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a 10-year period (2006–2015) in the south-west region of England.

Results We reviewed 19 admissions, in 18 individuals. Six (33%) had a malignancy, nine (50%) had a progressive neurodegenerative condition and three (17%) had a static neurological condition with associated epilepsy. Thirteen (72%) died in their local hospice, four (22%) at home, and one (6%) in hospital. Seventeen of 19 episodes involved the use of subcutaneous or intravenous midazolam infusion, for a mean of 11 days (range 3–27). There was a wide range of starting doses of midazolam, and 9/17 (53%) received final doses in excess of current dose recommendations. Six individuals received subcutaneous phenobarbital infusions, with four of these (67%) receiving final doses in excess of current dose recommendations. Plans for adjustments of infusion rates, maximal doses or alternative approaches should treatment fail were inconsistent or absent. In 16/18 (88%) cases seizures were successfully controlled prior to the day of the child’s death. Staff found the experience of managing seizures at end of life challenging and stressful.

Conclusions Pharmacological approaches to seizure management in end-of-life care are variable, often exceeding APPM dose recommendations. Despite this, safe and effective seizure control was possible in all settings.