67 Withdrawing assisted ventilation at the request of a patient with MND: Updated results of evaluation of care

<h3>Background</h3> Patients with motor neurone disease (MND) who are dependent on assisted ventilation may request that their ventilation is stopped if the benefits no longer outweigh the burdens. Many healthcare professionals (HCPs) find this emotionally and practically challenging. In 2015, the APM published guidance to support HCPs involved in the withdrawal process, including a proforma for HCPs to submit anonymised accounts of their experiences in order to evaluate the guidance. The authors present the results from the last nine years of data collection. <h3>Methods</h3> HCPs submitted anonymised proformas via email including patient demographics, temporal characteristics of care, medication used, management of the ventilator, and their reflections on the experience. Analysis of the data included descriptive analysis of the numerical data, and thematic analysis of the free text comments. <h3>Results</h3> 95 responses were received from 68 HCPs from November 2015 to October 2024. The majority of patients used non-invasive ventilation (94%) and were dependent on ventilation for &gt;22 hours per day (92%). Around half of the respondents chose to wean the ventilation settings, however approaches to this varied significantly. The subcutaneous route was common; however, the intravenous route was preferred by some for more precise and rapid titration. Younger patients (&lt;50 years) needed higher doses of medication to achieve adequate symptom control prior to removal of ventilation. Themes developed from the free-text comments included the practicalities of withdrawal planning, the value of team debriefs, and the rewarding yet emotional challenges of the withdrawal process. 95% of respondents reported no overtly challenging symptoms and 88% viewed families’ experiences as positive. <h3>Discussion</h3> The results support the APM guidance, demonstrating that a proportionate, titrated, and individualised approach is effective for managing ventilator withdrawal for patients with MND. The findings have contributed to an evidence-based update of the guidance, to be released in early 2025.