Thank you for inviting me as a guest speaker.
When I started my project five years ago as a resident doctor in training, I didn’t envision how pertinent it would become to the present MAID discussion. I was inspired by a friend I met in medical school who had a spinal cord injury. When I asked him about his life, he invited me to go out in a wheelchair with him in Vancouver. It was eye-opening to experience this and talk to him, and I realized we aren’t really taught the real patient perspective in medical training.
This further inspired me to individually interview 23 people from different walks of life who had had a spinal cord injury.
I discovered that most of the people I interviewed told me no one had ever really asked them in this amount of detail the dramatic changes they underwent psychologically, and the focus was usually on physical changes. Most of the participants said there was a disconnection from acute care medical staff in hospitals in understanding what they were going through. If someone related with them, it was usually a peer mentor, meaning someone who has had a spinal cord injury.
In my project, what is important to realize is that the majority of people who have had a spinal cord injury considered ending their lives once they knew they were paralyzed. However, what is interesting is that every single one of my participants said in that early time frame they actually would not have been able to make an informed decision to die, even though many wanted to die. They realized they couldn’t experience the context of their life without rehabilitation, integrating into the community, and having the opportunity to reframe their views. For example, one of my participants who said what helped him is a peer mentor who normalized his experiences. The peer mentor said to him “don’t worry about the suicidal thoughts, we all had them, they will go away, just keep pushing.” That gave him a mark post to aim towards, he went through rehab and many years later describes a good quality of life with not intention to die now.
Overall, My participants emphasized the importance of autonomy to decide what happens to their bodies, including when and how they may die, but that they need people who understand their adjustment and condition to counsel them properly. Through my research and clinical experiences, I also know how important it is to support patients with rehabilitation access, encouragement, and societal adaptations to enable non-typical able bodied individuals to thrive and have a strong place in our society.
Thank you for giving me the opportunity to highlight my research, and what I consider the lived perspective to be the expert perspective that I hope will be highlighted in Bill C-7. This means access to rehabilitation, community supports, and patient-relative counsel to make any informed decisions on MAID.
Dr. Tchajkova is a physician in Physical Medicine and Rehabilitation. After 15 years of university education in Canada, she is enjoying a busy practice in Kamloops, British Columbia. Her practice includes a range of patients with impairments ranging from stroke, brain injury, nerve injury, to spinal cord injuries. Five years ago she started a robust research project in Winnipeg interviewing 23 individuals who have had a spinal cord injury and asking them about their lived experiences with suicidal thoughts, suicidal intention, and rehabilitation.