Introduction Most people with motor neurone disease (MND) die from respiratory failure and non-invasive ventilation (NIV) can improve survival. The median survival of patients with good bulbar function not treated with NIV was just 11 days in one RCT (1). We wished to establish whether our 3 monthly follow up regime, following NICE guidance (2), ensures all patients are offered NIV or whether many are dying without this treatment opportunity.
Aim Establish what proportion of patients died before NIV was offered while under our follow up.
Method A retrospective analysis of case notes of patients who died during the calendar year 2013. Survival was calculated as days (d) from starting of NIV until death.
Results From our cohort, 24 patients died in 2013 of whom 20 had been offered NIV (17 compliant). Median survival was 390 (IQR 147–798) d. Median survival for NIV compliant patients was 462 (IQR 223–848) d. Median survival was 190 d for the 2 NIV compliant patients with severe bulbar dysfunction and 85 days for 3 patients who were non-compliant with NIV.
Of the 4 patients who died before NIV was offered, 2 had severe bulbar dysfunction and 1 patient was on CPAP for treatment of obstructive sleep apnoea. Pneumonia was reported as the cause of death in 2 of these patients. Details of the mode of dying of the other 2 patients could not be established (certified as MND).
Conclusion Most of the patients dying with MND had been offered NIV, 85% were compliant with treatment and survival was at least as good as published results. 4 died before NIV was offered but in 2, death was precipitant due to pneumonia, not ventilatory failure. As a default, 3 monthly review seems a reasonably safe interval for ventilatory surveillance in people with MND balancing intrusive hospital visits with the risk of missing the opportunity to try NIV at the end of life.
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