Seizure Management In End Of Life Care For Children

Seizure Management In End Of Life Care For Children

Harris N; Baba M; Beringer A; Mellor C; Rogers R; Taylor K; Sharples P

10.1111/dmcn.13347

Developmental Medicine And Child Neurology

2017

Hospice Care; Midazolam; Paediatric; Seizures; Terminal Care

Objective: Controlling seizures in children approaching death is often challenging. The evidence base to guide best practice is limited. We aimed to compare our current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine, and the Children's BNF, seeking to improve symptom control in this situation. Methods: Retrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a ten year period (2006-2015) in the southwest region of England. Results: We reviewed 18 cases where seizure management in EOL care was difficult. 6 (33%) had a malignancy, 8 (44%) had a progressive neurodegenerative condition, and 4 (22%) had a static neurological condition with associated epilepsy. 13 (72%) died in their local hospice, 4 (22%) at home, 1 (6%) in hospital. 17 (94%) 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. 6 (33%) received subcutaneous phenobarbital infusions, with 4/6 (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. In 17 (94%) cases seizures were controlled before the child died, but often this took hours or days. Fear of apnoea or over-sedation was the biggest barrier to prompt symptom control. Staff found the experience of managing seizures at end-of-life challenging and stressful. Conclusions: Seizure management in end-of-life care is inconsistent. Despite limited evidence, best-practice management guidance should be developed to support improvements in this area of symptom control.

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May 2017 List