Good evening.
As a rehabilitation specialist physician, I have 23 years of clinical and research experience with people with spinal cord injury. I follow them from acute care through rehab and transition to the community, and lifelong to manage symptoms, prevent complications and help improve quality of life.
Most people with spinal cord injury live for years—some up to normal life expectancy. My concern with MAID since Bill C-7 is the removal of the criterion that one is expected to die in the foreseeable future. People with a new, severe neurologic disability are now able to ask to end their life after only three months. I hope to convince you that three months is far too short.
I do not believe that people with new severe neurologic disability will have the ability to make an informed choice to choose death until they have had the opportunity to live with their new impairments and disabilities, reintegrate into the community and realize the excellent quality of life that is experienced by most with these disabilities.
Imagine waking up after a severe car accident, for example, and learning you have a spinal cord injury. You can't move your legs and maybe not even your arms. Many of you will think, that you wouldn't want to keep living like that. Yes, that's what many people with new spinal cord injuries think in the early months. Many of the acute care health providers that person meets early on have the same viewpoint. A lot of them have never cared for someone with a significant neurologic disability who is living a full life in the community. Many of the friends and family of that person who visit early on have the preconceived view that their loved one won't have much of a life going forward.
The person with a new spinal cord injury will spend months in hospital and in the first few years will still be adjusting to their new life. In these early months and years, suicidal thoughts and wishes to die are held by many. People can go through some very dark times. However, I can verify from my own research, other research done by colleagues and others, and my clinical experience that most people who have a chronic spinal cord injury—that is, at least a few years—rate their quality of life as very good and equivalent to or better than many people who are able-bodied.
In a research paper that I recently published with colleagues, it was found that most people with chronic spinal cord injury admitted that early after their injury, they had a wish to die. However, all of those people who we interviewed declared they no longer wished to die and would not accept MAID at that point in their life. They felt that being offered MAID too early on was wrong and that people were needing to live the life experience with spinal cord injury before they could make that kind of choice.
Literature supports that it takes years for people with new neurologic disabilities, such as stroke...and people cannot make such a decision and adjust to their new normal for at least two years.
I want to tell you a story that's reflective of many of the scenarios I've witnessed.
I was asked to see a young man in ICU on a ventilator with a high spinal cord injury. I was asked to discuss prognosis. The patient and mom were so relieved when I reported that he had a good chance of getting some significant improvement, based on my exam. The mom came to me crying and reported to me that the ICU doctor was advising them that they should turn off the ventilator—that his life would be terrible and not worth living. Guess what? That young man in ICU walked out of rehab to go home months later.
My point isn't that many of these patients get such excellent recovery, but it is rather to reinforce that we can't let our preconceived notions of what we think life with a disability would be like to cloud our judgment or care decisions, as we have not lived that life.
MAID now being part of care choices early on in the times when the person is really vulnerable, struggling to accept their new disability and before they've had the opportunity to realize what excellent quality of life their future may hold is a grave failure to these patients. It should not be part of a care choice for a long time, even up to years after their injury.