Case series demonstrates improved symptom management in paediatric palliative care with a weight-based loading dose of phenobarbital, indicating a need for better guidelines.
Background: There is a lack of evidence to guide the administration of phenobarbital for managing refractory symptoms in paediatric palliative care patients at home during the terminal phase. Case presentation: Three terminal home-based paediatric cases with refractory symptoms that caused significant distress to both the child and family during the final days of life. All three cases had several changes in medications before receiving phenobarbital. Case management: The first case had a loading dose of phenobarbital based on an adult guideline; the second case commenced a continuous phenobarbital infusion without a loading dose of phenobarbital; and the final case had a weight-based loading dose. Case outcome: In the absence of paediatric clinical guidelines for the use of phenobarbital in refractory symptom management, a weight-based loading dose of phenobarbital before commencing a continuous infusion provided enhanced symptom management when compared with a loading dose using adult guidance or the absence of one. Conclusion: Further research is needed on the administration of a loading dose of phenobarbital for managing terminal refractory symptoms in the paediatric palliative care population during the terminal phase. This will help to establish evidence-based guidelines for paediatric palliative sedation, ensuring appropriate relief of refractory symptoms for a peaceful death at home.
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Kelly et al. (2025) studied this question.
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