Assisted ventilation withdrawal in motor neuron disease: updated results.

Abstract

Introduction: Patients with ventilator-dependent motor neuron disease (MND) may request withdrawal of their assisted ventilation. Facilitating this process as a healthcare professional (HCP) can be emotionally and practically challenging. The Association for Palliative Medicine (APM) issued guidance to support HCPs and invited anonymised accounts of the withdrawal process to provide an update on the guidance.

Methods: HCPs submitted anonymised accounts via email. Quantitative data was analysed descriptively in Excel. Free-text comments were analysed thematically using an inductive, iterative approach.

Results: 68 HCPs submitted 95 accounts of ventilation withdrawal between 2015 and 2024. Most patients received medications pre-withdrawal (94%), primarily a combination of an opioid and midazolam, mostly subcutaneously. Younger patients tended to need higher doses to achieve adequate symptom management prior to withdrawal. Practices of weaning the ventilator varied significantly between respondents. The median time to death following withdrawal of ventilation was 30 min, with three-quarters of patients dying within 2 hours.

Conclusion: This is the largest data set to date regarding the withdrawal of assisted ventilation in MND. This updated analysis reaffirms that a personalised, titrated approach remains appropriate and effective. The revised APM Guidance 2025 incorporates new sections on recommendations for managing the ventilator.