Decision-making in paediatric palliative sedation: A vignette survey across five European countries

This study explores how physicians approach the initiation and management of paediatric palliative sedation therapy (PST) in two end-of-life scenarios. It aims to inform future practice, particularly given the current absence of comprehensive international and national guidelines in most countries. A quantitative dual-vignette study was conducted across five European countries, using an oncological and metabolic end-of-life scenario. The questionnaire examined participant characteristics, decisions and procedures related to initiating paediatric PST, consultation with parents and healthcare providers, and clinical responses following sedation initiation. Overall, 55.6% of respondents indicated they would initiate sedation in vignettes intentionally envisioned as candidates for palliative sedation. Morphine (66.0%) and midazolam (55.2%) were the most commonly selected drugs for initiating paediatric PST. Approximately one-third (31.2%) would start or continue intravenous fluids, while a majority would discontinue non-comfort medications (84.8%), monitoring (56.8%) and nutrition (56.0%). In the metabolic vignette, significant cross-country differences were observed in decisions regarding fluids, feeding and medication use (p < 0.05). Most respondents would involve parents in decision-making (83.2%) and would discuss the case in a multidisciplinary meeting (76.0%). Across clinical scenarios, physicians would adjust medication primarily in response to the child's assessed level of distress, escalating therapeutic measures as symptom severity increased.

Substantial variability exists in physicians' approaches to paediatric PST across clinical scenarios and countries. These findings demonstrate that, while certain clinical principles such as first-line medications are commonly upheld, considerable heterogeneity in practice of paediatric PST remains, underscoring the need for paediatric-specific guidance and training to ensure consistent and evidence-based decisions.

• PST aims to relieve intolerable, refractory end-of-life symptoms, and is used in 7-12% of paediatric deaths. • Opioids and benzodiazepines are most commonly used. However, limited paediatric guidelines and infrequent use of PST, results in considerable variability in medication choices, team involvement and overall practice.

• This first international vignette study on paediatric PST shows major variation across countries and clinical scenarios, in medication adjustments, monitoring and artificial hydration. • The Netherlands, the only participating country with national guidelines, showed near-unanimity in responses, suggesting a potential role for national guidelines in promoting consistency in clinical practice?