Dying of amyotrophic lateral sclerosis

Abstract

<h3>Objective</h3> To describe health care service utilization and cost for decedents with and without amyotrophic lateral sclerosis (ALS) in the last year of life. <h3>Methods</h3> Using linked health administrative data, we conducted a retrospective, population-based cohort study of Ontario, Canada, decedents from 2013 to 2015. We examined demographic data, rate of utilization, and cost of health care services in the last year of life. <h3>Results</h3> We identified 283,096 decedents in Ontario, of whom 1,212 (0.42%) had ALS. Decedents with ALS spent 3 times as many days in an intensive care unit (ICU) (mean 6.3 vs 2.1, <i>p</i> &lt; 0.001), and twice as many days using complex continuing care (mean 12.7 vs 6.0, <i>p</i> &lt; 0.001) and home care (mean 99.1 vs 41.3, <i>p</i> &lt; 0.001). A greater percentage of decedents with ALS received palliative home care (44% vs 20%, <i>p</i> &lt; 0.001) and palliative physician home visits (40% vs 18%, <i>p</i> &lt; 0.001) than decedents without ALS. Among decedents with ALS, a palliative physician home visit in the last year of life was associated with reduced adjusted odds of dying in hospital (odds ratio 0.65, 95% confidence interval 0.48–0.89) and fewer days spent in the ICU. Mean cost of care in the last year of life was greater for those with ALS ($68,311.98 vs $55,773.48, <i>p</i> &lt; 0.001). <h3>Conclusions</h3> In this large population-based cohort of decedents, individuals with ALS spent more days in the ICU, received more community-based services, and incurred higher costs of care in the last year of life. A palliative care physician home visit was associated with improved end of life outcomes; however, the majority of patients with ALS did not access such services.