Seizure management in children requiring palliative care: A review of current practice

Harris, Nicola; Baba, Megumi; Mellor, Charlotte; Rogers, Rebekah; Taylor, Kirsty; Beringer, Antonia; Sharples, Peta

Abstract

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.

Citation

Harris, N., Baba, M., Mellor, C., Rogers, R., Taylor, K., Beringer, A., & Sharples, P. (2020). Seizure management in children requiring palliative care: A review of current practice. BMJ Supportive and Palliative Care, 10(e22), https://doi.org/10.1136/bmjspcare-2017-001366

• Journal Article Type: Article
• Acceptance Date: Jun 7, 2017
• Online Publication Date: Jul 7, 2017
• Publication Date: Aug 19, 2020
• Deposit Date: Jul 17, 2018
• Publicly Available Date: Jul 17, 2018
• Journal: BMJ supportive & palliative care
• Print ISSN: 2045-435X
• Electronic ISSN: 2045-4368
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Volume: 10
• Issue: e22
• DOI: https://doi.org/10.1136/bmjspcare-2017-001366
• Public URL: https://uwe-repository.worktribe.com/output/885223
• Publisher URL: http://dx.doi.org/10.1136/bmjspcare-2017-001366
• Additional Information: Additional Information : This is the author's accepted manuscript. The final published version is available here: http://dx.doi.org/10.1136/bmjspcare-2017-001366.