Goal-Concordant Care in People With Amyotrophic Lateral Sclerosis Receiving Palliative Care.

Context: Although it is known where people with amyotrophic lateral sclerosis (ALS) are dying, less is known about whether they are dying where they want to.

Objectives: To determine the rate of dying in a preferred place and factors associated with doing so in people with ALS receiving clinic-based specialist palliative care.

Methods: Retrospective cohort study of people with ALS receiving clinic-based specialist palliative care in Toronto, Canada between July 2022 and February 2024. Association between preferred and actual place of death was determined using a χ² test. Factors associated with dying in a preferred place were determined using a multivariable binary logistic regression analysis.

Results: In 367 individuals, at time of consultation, median age was 67 years; 60.8% had a Palliative Performance Scale score between 50% and 60%, and 43.3% had noninvasive ventilation. Mortality rate up to February 2024 was 41.7%. About 85.4% stated a preference to die at home, 8.7% in hospital, and 5.9% in a hospice facility, whereas 54.9% died at home, 34% in hospital, and 11.1% in a hospice facility. Of those with known preferred and actual place of death, 70.1% died in a preferred place (χ² = 36.2; P < 0.001). Dying in a preferred place was associated with increasing age (odds ratio [OR] = 1.1; 95% confidence interval [CI] = 1.0-1.1) and having noninvasive ventilation (OR = 2.5; 95% CI = 1.0-6.2).

Conclusion: Younger age and not having noninvasive ventilation at the time of consultation may suggest a higher risk of goal-discordant end-of-life care and the need to engage in early future planning when these factors are identified.