Dr. Christine Watt, at Ottawa Hospital Research Institute and Dr. Michael Bonares, at Sunnybrook Health Sciences Centre, awarded $125,000 over two years.
Palliative care is an approach that is aimed at optimizing quality of life for people facing a life-threatening illness such as ALS. One of the main goals of palliative care doctors is to help patients and caregivers with future planning to achieve goal-concordant care, which is care aligned with an individual’s values. Previous research has collected data on where people living with ALS die, but none have compared this to their preferred place of death. There is no information on whether people with ALS are dying where they want to, or the perceptions of caregivers on end-of-life. Dying in a preferred location represents goal-concordant care, and understanding its factors and complexities are critical to delivering high-quality palliative care to people living with ALS and their caregivers.
In this project, Dr. Watt, Dr. Bonares, and collaborators will analyze data from people living with ALS who received palliative care in Toronto or Ottawa, to determine their preferred and actual place of death. Additionally, they aim to determine the sociodemographic and clinical factors 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 caregiver perceptions, supporting the development of caregiver support tools and services. Dr. Watt’s findings could provide critical knowledge necessary to improve both the care that people living with ALS deserve and grief support for bereaved caregivers.
Collaborators: Jocelyn Zwicker, Andrea Parks, Breffni Hannon, & Wenshan Li
OUR CONTINUOUS SUPPORT
The ALS Canada Research Program has always supported grants that help enhance the quality of care for people living with ALS. By providing support to the Canadian ALS Research Network (CALS) and funding initiatives that promote patient care, education, support, and clinical research, we help to ensure that Canadians living with ALS receive compassionate, high-quality care throughout their journey.
Together, we can transform the quality of care of Canadians living with ALS. Donate now to create change across the country.
Donate