• Nevena Markovic, Marcus Povitz, Joanne Smith, David Leasa, Christen Shoesmith, and Teneille E Gofton.
• 1Department of Clinical Neurological Sciences,Western University,London,Ontario,Canada.
• Can J Neurol Sci. 2018 Jul 1; 45 (4): 445-450.

BackgroundNon-invasive ventilation (NIV) improves quality of life and survival in patients with amyotrophic lateral sclerosis (ALS) and respiratory symptoms. Little is known about the patterns of NIV use over time and the impact of NIV on end-of-life decision-making in ALS.ObjectiveThis study assessed the pattern of NIV use over the course of the disease and the timing of end-of-life discussions in people living with ALS.MethodA retrospective single-center cohort study was performed at London Health Sciences Centre. Daily NIV duration of use was evaluated at 3-month intervals. The timing of diagnosis, NIV initiation, discussions relating to do-not-attempt-resuscitation (DNAR) and death were examined.ResultsIn total, 48 patients were included in the analysis. Duration of NIV use increased over time, and tolerance to NIV was observed to be better than expected in patients with bulbar-onset ALS. There was a high degree of variability in the timing of end-of-life discussions in patients with ALS (356±451 days from diagnosis). In this cohort, there was a strong association between the timing of discussions regarding code status and establishment of a DNAR order (r2=0.93).ConclusionThis retrospective cohort study suggests that the use of NIV in ALS increases over time and that there remains a great deal of variability in the timing of end-of-life discussions in people living with ALS. Future prospective studies exploring the use NIV over the disease trajectory and how NIV affects end-of-life decision-making in people with ALS are needed.

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