Previous Projects

ALS progresses quickly and results in the loss of voluntary muscle control. Health care providers, including doctors and nurses, need to communicate with ALS patients and their families in a caring way because of the devastating and terminal nature of the disease. Communications need to adapt to different stages of the disease and levels of disability experienced by patients.

Communications cover diagnosis, treatment and care options and end-of-life decisions. These communications, however, occur against a backdrop of health information from other sources, such as newspapers, television and the internet. Patients and their families commonly seek medical and treatment information from such sources, but the information may be misleading. For example, information on experimental treatments, such as stem cell therapies, can encourage visits to stem cell clinics in countries with low regulatory standards. In contrast to such messages of hope for a treatment, ALS patients have received much media coverage in their legal battles to allow medical aid in dying. These legal battles ultimately led, on June 17, 2016, to the Medical Aid in Dying Act, which allows Canadians meeting certain conditions to seek medical assistance in ending their lives. The provinces and medical associations have responded with frameworks to provide medical aid in dying.

We think that the current public debate over medical aid in dying does not properly capture the range of relevant patient perspectives. It ignores clinical evidence on end-of-life care options for patients. Our research will place the perspectives, needs, and values of patients and family members at its centre to understand how to improve clinical communications about ALS. We will analyze media content on ALS, interview patients and family members, and health care providers about how to communicate in a way that meets the needs of all involved.