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

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.

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.

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.

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).

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.