Controlling seizures in children approaching death can be difficult, and there is a limited evidence base to guide best practice | BMJ Supportive & Palliative Care
Objectives: 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.
The National Palliative and End of Life Care Partnership which includes Care Quality Commission, Public Health England and the Association for Palliative Medicine has jointly published Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. This guidance details the work that several organisations have agreed to do to improve local services, enabling people who use these services to have fair access to care, and that any care is based on individual needs.
In December 2013 the Scottish Government accepted the recommendation that the Liverpool Care Pathway (LCP) should be phased out in Scotland by December 2014. This statement confirms the current position.
Health and Care providers across Scotland are committed to the provision of consistently high quality end of life care for all that reflects the 4 principles set out in the guidance ‘Caring for people in the last days and hours of life‘ published at the end of 2013:
Principle 1: Informative, timely and sensitive communication is an essential component of each individual person’s care
Principle 2: Significant decisions about a person’s care, including diagnosing dying, are made on the basis of multi-disciplinary discussion
Principle 3: Each individual person’s physical, psychological, social and spiritual needs are recognised and addressed as far as is possible
Principle 4: Consideration is given to the wellbeing of relatives or carers attending the person