Mom had choice, Dad did not: Why we need legal advance requests for MAID
Personal Stories | January 5, 2024 | Selena McLachlan
At 71, my mom, Suzie – a vibrant and active woman who loved to dance and sing – was diagnosed with a devastating disease that would slowly take control over her body and mind. Her prognosis was five to seven years – before succumbing to the disease – but worse would be the unknown around her quality of life. She made her wishes known, “When I can no longer eat, sing, dance and hug, I don’t want to live.” And while she lived the first few years in a state of decline, she was still able to find the simple joys in life.
In the third year, things took a turn for the worse. My mom then spent the next three years bound to a wheelchair, completely dependent on full care, unable to talk and could no longer eat solid food. My mom was completely aware of her incapacitated state, which in some way made things even worse. Unable to speak, she started making gestures with her one functioning hand – a slicing motion to her neck, while pointing to the sky. We asked her what that meant. Unable to speak, my mom was able to communicate through a text-to-talk app. She said she didn’t want to live like this anymore and asked me to remind her how much longer she would have to endure the cards she was dealt. I told her the doctor said she could live another year or so. Her reply was, “Oh good.” But when I told her there were no guarantees of a timely passing, she got very upset at the prospect of having to go on like this much longer. I asked if she’d heard of medical assistance in dying (MAID). She hadn’t. I explained that there may be an option for her to end the suffering and “go to sleep” on her own terms, in her own bed, surrounded by her family. She emphatically replied “yes” and so the process with her doctor began.
My mom could barely contain her enthusiasm. After she was approved for MAID, she picked the day, asked to have her hair done and wore her favourite outfit. When we entered the room, she was like a schoolgirl, giddy with excitement, waiting for “her day.” We shared some stories; my mom played her favourite song and some videos of her and my dad dancing. Then she was ready. With a big smile on her face, with her family by her side, my mom – a mere fraction of her former self – found peace and was finally able to take some control back over her life. It was beautiful, empowering and peaceful. Little Suzie – as many liked to call her – returned to her former self, dancing, singing and smiling from above.
But my story doesn’t end there. My father, already diagnosed with Lewy Body dementia said, “What about me, can I decide to have MAID when I no longer have any quality of life?” Sadly, the answer was not as straightforward. As it stands today, people like my father – faced with a devastating, untreatable disease that almost certainly leads to cognitive decline – would be faced with a very complicated process in order to ensure the ability to give final consent before a MAID provision. And because advance requests for MAID are currently not legal, he could not put in writing when he would like to receive MAID after losing capacity. Living with this news, on top of losing his life partner of 65 years, was devastating.
My dad died a few weeks ago – exactly a year after my mom passed – succumbing to a brain bleed which resulted from a bad fall brought on by the Lewy Bodies. Unfortunately for my dad he didn’t die right away, but instead had to endure the pain, suffering and anxiety of having sustained multiple fractures including one in the neck. Before the fall, he still had quality of life. Had advance requests for MAID been an option, he would have liked to have had one in place, but it appeared his only option would have been to elect MAID “now,” while he still had some quality, which of course is not what he wanted, nor what most people would choose.
Having watched the way my mom took control over her life and left this world peacefully on her own terms left me feeling like my dad was robbed of that same choice. I’ve shared my story with many people, and while a few may not choose MAID for themselves, they all support one’s choice to do so. Knowing that I may carry the same genes as my father, I am doing everything I can to support Dying With Dignity Canada’s fight to make advance requests for MAID legal.
Send a letter to your Member of Parliament and the Ministers of Health and Justice in support of advance requests for MAID using the tool on our website.