CW: Suicide. Terminal Illness.
I recently read This Is Assisted Dying: A Doctor’s Story of Empowering Patients at the End of Life, by Stephanie Green, MD. Dr. Green was among the first physicians in Canada to provide Medical Assistance in Dying (MAID), and her book on her experiences is excellent. The compassion she shows as she tells the stories of patients she’s helped to die on their own terms – with the usual caveat of changed names for privacy’s sake – is extraordinary, as are the details she generously shares about her own life. I highly recommend it for everybody, but especially for those who are uncomfortable with the subject of assisted death.
Personally, I’ve been a supporter of MAID since I first heard of Sue Rodriguez, a Canadian woman with ALS who challenged the laws against assisted suicide back in the 1990s. I was barely out of my teens, and as I listened to her speak, I was suddenly confronted with my own mortality in a big way.
In the 30 years since, as my own inevitable demise has crept closer, my support for MAID has only grown stronger. But that’s not just because of my own desire to look out for myself. No, much like Dr. Green, I have stories to tell.
(Note: Any vagueness is deliberate, out of respect for my surviving family.)
When he was in his late 50s, my father was diagnosed with a very rare, terminal illness. It’s so rare that, even though the specialist he was sent to was considered the most qualified doctor in the city to care for him, said specialist had never actually had a patient with this disease before. It was a horrifying illness, one that I wouldn’t wish on my worst enemy. (Which, in reality, is what my father was.) At the time of his diagnosis, he was given two years to live, but survived for eight, in constant agony.
While my father and I were no contact by this time, I was well aware of his suffering. Excruciating pain, hospitilisations, medication side effects, and a slow but steady physical deterioration – it all took its toll, and not just on him. I saw the hell it put my family through, watching him decline while trying to support him as best they could. Even at a remove, it put me through hell, too, as the only way I could ‘help’ was to stay out of it.
It was honestly a relief when he died.
It was also the first time in my life that I respected my father. Because his end wasn’t the one the doctors predicted. At the time, they were estimating he would only last for months – three? six? I don’t remember, exactly – but he’d had enough, so he gave a big ol’ middle finger to that, and took his own life.
This was more than a decade before MAID became legal in Canada, and one of his main concerns was that none of my family be implicated in his choice, lest they face legal trouble after the fact. So even though some members of my family knew his plan, they pretended they didn’t. And my father, whose chosen method required a physical set up, pushed his barely functioning body to get things ready on his own.
To this day, it infuriates me, what he had to do to die on his own terms – and that he had to do it alone.
My mother’s story was very different. The illness that took her is common. (It’s one of the top killers in Canada.) Like my father’s was, it’s incurable, but it causes more mental degeneration than physical. After her diagnosis, she lived in terror of the time she would no longer recognize her children. Again, I was at a remove, as I had long since moved to another province. The rest of my family were not so spared as she declined. But still, I remember trying to comfort her over the phone while she cried.
One of the things she cried about was that MAID was not yet available in Canada. By this time, debate on the subject was heated throughout the country. If it was available, she told me, she would choose it, but she wouldn’t do as my father had done and take matters into her own hands. I respected her decision as much as I respected his.
MAID became legal in Canada about a year before my mother died. It was too late for her. By that time, her mental capacities had deteriorated so much that she couldn’t provide consent. And so she lived out her life in the way she’d feared the most, and her death … was neither peaceful nor pleasant.
And here I thought I was furious at my father’s death.
Anger is a great motivator. So is fear. And I made use of them both.
In reality, things had improved a lot since my father’s death, in that MAID had been legalized. But the legislation was flawed: it didn’t allow for advance requests. So even had MAID become legal before my mother’s mental capacity had deteriorated too far, she likely still wouldn’t have qualified in time for it from a physical perspective, and no advance requests would have meant there was nothing she could do about it.
And that is what scares me the most when it comes to my own end-of-life planning. My health is such that I’m a likely candidate to have a stroke. I hope that, if that happens, I’m dead before I hit the ground, but I’m fucking terrified that I’ll survive and be debilitated to an unacceptable degree, but unable to consent to MAID. Or I’ll be in a car accident, or have a heart attack, or simply grow old, or one of a million other possibilities, and end up stuck in a life I don’t want to live – if it could even be called living. I wouldn’t call what my parents went through towards the end ‘living,’ and I know neither of them did, either.
So when the legislation that would ultimately lead to MAID being legalized was under debate, I did what I could to make my voice heard, especially in regards to advance requests. I wrote my member of parliament (who only responded to me two months later, after the bill had passed). I wrote every single senator (only seven of whom ever replied). I signed every petition I could get my hands on. I donated to Dying With Dignity Canada (and still do whenever I can).
In her book, Dr. Green addresses advance consent, and the reasons why it’s a tricky subject, especially for a physician trying to determine whether or not a patient actually qualifies for the procedure. And I get it. I really do.
But I’m also not a physician, and I’m impatient, and more than a little hard headed. So I’ll keep using my words, and my signature, and my dollars in the ways I can to help ensure the questions regarding advance consent get answered, and the law gets amended.
Hopefully in the near future, instead of a distant one.