To describe and compare ALS patients who died of MAiD and compare them with patients who died directly of ALS in terms of sociodemographic data, of disease presentation and evolution, and of time between diagnosis and death.

Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease with no curative treatment. In Canada, since 2016, patients who meet specific criteria can request Medical Assistance in Dying (MAiD). However, we know very little concerning patients requesting MAiD. Questions remain whether patients with a certain disease presentation and evolution are more likely to request MAiD, whether MAiD is more prevalent in patients with a certain socioeconomic status, and whether other characteristics may have an impact on patients’ choice to request MAiD.

A retrospective study of 206 ALS patients’ electronic medical records was performed. Patients selected had follow-up at the Enfant-Jesus Hospital in Quebec City between January 2014 and April 2023. Sociodemographic and disease presentation/evolution data was collected. Fisher’s exact and Chi-square tests were used for nonparametric data. Mann-Whitney tests were used to analyze parametric data.

The analysis included 174 patients and no MAiD patients were excluded. ALS MAiD patients (N=66) had an initial median ALSFRS-R score of 42, and most patients  had a spinal onset (52.8%). Regarding sociodemographic data, most ALS MAiD patients were male (54.55%), in a relationship (67.7%), had adult children (73.4%), and had university level education (55.8%). No significant difference was observed with patients who died of ALS complications (N=108). On average, ALS MAiD patients lived 1.91±0.27 years after diagnosis, while ALS patients lived 2.44±0.33 years.

Our study suggests that the main medical and socioeconomic characteristics of ALS MAiD patients do not significantly differ with those of patients who die directly of ALS complications. Further investigation is underway to include evolution of ALSFRS-R scores.