Background Withdrawing mechanical ventilation at the request of a patient with motor neurone disease is complex and challenging. In 2015, the Association for Palliative Medicine (APM) published widely endorsed guidance for healthcare professionals (Faull. Withdrawal of assisted ventilation at the request of a patient with motor neurone disease. APM). We will discuss the updated results of an anonymised data set provided by professionals who have utilised the guidance across the United Kingdom.

Methods Excel analysis of a core data set, defined in the APM guidance, and thematic analysis of free-text comments, submitted by UK-based healthcare professionals soon after withdrawal of mechanical ventilation in any care setting, including inpatient hospice and at home. This is an updated analysis following previously published work (Faull, Wenzel. BMJ Support Palliat Care. 2022; 12(e6):e752-e758).

Results Eighty-one data sets were submitted by fifty-eight professionals from across the UK. Frequency and dosage of opioid and sedative medication required pre- and post-withdrawal of the mechanical ventilation was similar to that shown in previous analysis. Ten patients lived for longer than eight hours following withdrawal of mechanical ventilation. These patients were of varying ages and had varying dependency on mechanical ventilation prior to withdrawal. All ten patients were using non-invasive ventilation as opposed to tracheal ventilation.

Discussion The updated results of this evaluation of practice provide new information on patients who have a prolonged time to death following withdrawal of mechanical ventilation in motor neurone disease. We will discuss the reported experiences of healthcare professionals, as well as the experiences of family members and the implications for service delivery particularly when there is a longer time to death following withdrawal.