The decline in my physical ability when I became sick just over four years ago was rapid, brutal and, unfortunately, largely irreversible. Within a few months I went from having health and independence to being unable to walk up and down the stairs in my own home without assistance.
I'm living with adhesive arachnoiditis and axial spondyloarthritis—both autoimmune-triggered inflammatory spine diseases—as well as numerous related conditions, all of which cause many neurological symptoms, the loudest of which is intractable pain. My immune system is suppressed, leaving me at a higher risk for adverse outcomes if I get sick. The medications I take to try to manage my autoimmunity cause side effects that often rival the conditions they are supposed to treat. I am currently on 18 different medications.
I requested MAID for the first time in June 2019, but was denied because I didn't have a reasonably foreseeable natural death. I requested MAID for the second time in April 2022, and was approved. I remain approved for MAID and I choose to keep that approval for when I make the very difficult decision to use it.
I have a life-limiting chronic illness that causes pain severe enough that it can make me wish for death, but I wasn't given the mercy of a terminal diagnosis to go with it. Over the last four years I have tried everything there is available to help manage my pain and other symptoms. I have had 41 invasive and painful spine procedures, such as steroid injections, nerve route blocks and epidurals. I've had spine surgery three times, radio frequency ablations, acupuncture, physiotherapy and prolotherapy, and I've completed the entire program at the chronic pain clinic.
At the end of February 2022, I had a spinal cord stimulator implanted in the hopes that it would help reduce the pain enough to make my life livable. It helps, but not as much as we had hoped. I remained active in my health and health care even as I was going through the MAID process. MAID is my last resort.
After I requested MAID for the second time, it took the MAID care coordination service five weeks to find two MAID assessors willing to assess a complex case like mine, in which death was not reasonably foreseeable. If I had needed a third assessment, there would have been no third assessor in Alberta to assess me at the time. Legal and accessible are not the same thing.
The assessments that I underwent as part of the MAID process were extremely thorough, and my MAID-providing physician and I maintain an open line of communication. As an assessor, he looked at my entire life, not only at the health care records. The biggest safeguard there for people with disabilities is the assessors—high-quality assessors.
Of note is that I was diagnosed with bipolar I disorder 15 years ago, when I was 29 years old. It has been well controlled for years, but as a precaution, the first time I went through the MAID process I had a thorough psychological evaluation to determine my capacity to consent and to make sure that bipolar disorder was not a factor in my request for MAID.
The second time I went through the MAID process, another psychological assessment wasn't required, although if it had been, my second assessor happened to be a psychiatrist in her day job, so that would have simplified things for me.
For eight months last year my family and I filmed a documentary with Citytv, chronicling my journey with MAID. In the documentary I shared my struggles with the actual MAID process itself, as well as sharing a portion of the emotional impact that MAID has had, not only on me but on my family as well. It has forever changed us all.
In January 2021 I requested palliative care before requesting MAID for the second time. That request was denied because I did not have a terminal diagnosis. After being approved for MAID I requested palliative care again and was again denied. On that day in June 2022, I was clearly told by Alberta Health Services that palliative care is not available to anyone without a terminal diagnosis.
I don't know if having access to palliative care would have made much of a difference to my physical suffering or not, but I believe my quality of life is just as important as that of someone who receives a terminal diagnosis, and I would have welcomed any support.
My family and I hired a death doula, which for us turned out to be a very negative experience. I believe the idea behind a death doula is a good one, and I hope that the right people continue that work.
The pain management palliative care referred to by Alberta Health Services in its MAID policies and FAQs, which were published after the legislation changed in March 2021, doesn't seem to exist. Moving forward, there needs to be clearly defined, actually accessible palliative care provided to every patient who has been approved for MAID, regardless of their diagnosis.
I hope my lived experience can help shine a light on areas of the MAID process that may need improvement and also on the areas that don't. I thank you for taking the time to listen. I welcome any questions.