79 Mechanical ventilation withdrawal in motor neurone disease: an updated evaluation of practice

Introduction The decision to withdraw mechanical ventilatory support at the request of a patient with motor neurone disease (MND) is complex and unique. The Association for Palliative Medicine of Great Britain and Ireland (APM) produced Guidance for Professionals which includes an audit of process and outcomes. Analysis of this data was published in 2020 (Faull and Wenzel, 2020). Objectives To provide an updated evaluation of datasets provided by clinicians following withdrawal of mechanical ventilation. Methods Excel dataset analysis and thematic analysis of free-text responses by clinicians. Results 83 responses were received from a range of healthcare professionals. Most cases were out of hospital in either a hospice (n=38), care home (n=3) or person's own home (n=39). Most patients were on non-invasive ventilation (NIV) (n=76) with three patients on tracheostomy ventilation (TV). 55 (66%) patients lived for less than one hour after ventilation was withdrawn. Ten (12%) patients lived for more than six hours, with five (6%) living more than 24 hours following withdrawal. 38 (46%) patients were receiving a continuous subcutaneous infusion (CSCI) of an opioid or benzodiazepine or both prior to removal of ventilation. 77 (93%) patients received medication to manage symptoms prior to mask removal, with 47 (57%) patients receiving medication following the withdrawal of ventilatory support. The median total subcutaneous dose administered (immediately before and after ventilation withdrawn) of Midazolam was 10–20 mg and of opioid (Morphine equivalent) 10–15 mg. Conclusion This updated evaluation supports the findings of Faull and Wenzel (2020) that the guidance of an individualised, titrated, proportionate approach to symptom management is effective. Although significant variability exists in time from withdrawal of ventilatory support to death, most patients lived for less than one hour. The median doses and choice of medications are moderate and widely available. These findings have important implications for service provision and offers reassurance to patients, their relatives, and clinicians.