Amyotrophic lateral sclerosis (ALS) is a terminal disease of nerves and muscles. From the time of symptom onset, people with ALS live about 3-5 years. Death results in significant grief in their caregivers. Previous research has shown where people with ALS are dying, but none have shown where they want to die, whether they are dying where they want to, or the perceptions of informal caregivers about the end of life. Dying in a preferred location represents goal-concordant care, which is care that is aligned with an individual’s values. One of the main goals of palliative care doctors is to help patients and caregivers with future planning in order to achieve goal-concordant care. An understanding of goal-concordant care, factors associated with goal-concordant care, and of caregivers’ experiences of the end of life and grief is critical to delivering high-quality palliative care to individuals with ALS and their caregivers. Therefore, we seek to describe people with ALS who received palliative care in clinics in Toronto or Ottawa, Ontario between July 2022 and December 2024; to determine where they are dying, where they want to die, and whether they are dying where they want to; to determine the factors that are associated with dying in a preferred place; to understand caregivers’ perceptions of the end-of-life care received and to explore its association with grief. This research could identify factors that increase or decrease the chance of dying in a preferred place, and increase our understanding of perceptions of caregivers about the association between dying in a preferred location and grief, which could result in the development of caregiver support tools and services. That is, this study will provide critical knowledge necessary to improve both the care that individuals with ALS receive and grief support for bereaved caregivers.
