To describe Amyotrophic Lateral Sclerosis (ALS) patients who requested physician-assisted death (PAD) 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.

ALS is a neurodegenerative disease with no curative treatment. In Canada, since 2016, patients at the end-stage of the disease have the option of requesting PAD. However, little is known concerning these patients. Questions remain whether PAD is more prevalent in patients with lower socioeconomic status, whether patients with depressive symptoms are more likely to request PAD, and whether disease presentation and evolution differ with patients dying directly of ALS.

A retrospective study of 62 ALS patients’ electronic medical records was conducted. Patients selected died at the CHU de Québec in Quebec City between January 2014 and April 2022. Sociodemographic and disease presentation/evolution data was collected. Independent T-tests were used to analyze parametric data, and Chi-square tests were used for nonparametric data.

A total of 45 patients were included in the analysis. No PAD patients were excluded. Concerning sociodemographic data, most PAD patients (N=17) identified as female (52.9%), were married (58.8%), had adult children (81.3%), and had a high school diploma or higher (83.4%). Most PAD patients had spinal onset of the disease (52.8%), and 11.8% of patients had a history or symptoms of depression. There was no significant difference with patients who died of ALS (N=28). In average, PAD patients lived 1.56±0.28 years after diagnosis. Patients who died of ALS were similar (1.62±0.28 years).

Our study suggests that socioeconomic status, prevalence of depression/depressive symptoms, and disease presentation/evolution do not differ between PAD patients and patients who die directly of ALS. Further investigation is underway to include patients dying outside of the hospital setting to confirm these results.