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Illustration by Mary Kirkpatrick
A year has now passed since my spouse of more than 40 years died. Time has dulled the pain and sorrow but the heartbreak remains. Every day I still grieve, but I find comfort knowing his fully informed decision to access medical assistance in dying (MAID) was guided by values and beliefs concerning the quality of end of life. It was an incredibly peaceful end to a beautiful life.
Sadly, in the modern world the concept of death seems to be viewed as a bad thing. Our pursuit of youth and longevity has permeated our society almost to the point of obsession. If we were to embrace death as part of the cycle of life, we could instead better create a legacy of the person by keeping their memory and spirit as part of us. The resulting grief and heartbreak from a death is part of the cycle and this, in my opinion, keeps the person’s memory and spirit alive.
The never-ending debate regarding MAID somehow seems to be based on the assumption that it is fundamentally wrong. People will use various arguments to support this. I think we need to recognize that part of the issue is based on our refusal to accept death.
None of the arguments against or for MAID are completely incorrect but I believe the real issue is about personal choice. It’s not for everyone, nor was it ever intended to be, just as deciding to get married or live common law, to have a child or an abortion, to have chemo or not, and so on, are personal choices. There is no right or wrong answer.
Part of the debate on MAID is the perceived idea that someone who is “disabled” (physically or mentally) can’t make an informed decision and therefore shouldn’t be allowed this choice. It’s often assumed that if a “disabled” person chooses MAID it was not borne of self-agency but rather of family and society wanting to get rid of them as a burden.
My spouse suffered from multiple sclerosis and was therefore deemed “disabled.” Over the 44 years he lived with the disease, it slowly affected not only his mobility but also the proper functioning of organs, among other issues. In the early stages, we had caregivers provided by the government. However, as we needed more help, the system could not provide it, so it fell on me to be his sole caregiver. While this was no simple task and could be mentally and physically demanding, I would not have changed it for a moment. It was rewarding and created an even more special bond between us.
When my husband reached complete physical impairment and the start of mental decline, common with people with advanced MS, it was a “line in the sand,” so to speak. Plus, it was becoming overwhelming for me as his only caregiver. We had to act while he could still independently make a decision.
My roles as a spouse and caregiver was to be supportive of whatever he decided and to ensure it was carried out. We did not debate the choices as it was not up to me to influence his decision. I listened. We sought information from our trusted family doctor, who provided insights into the options available and the processes involved. We listened and weighed everything but the only thing that mattered was that my spouse no longer enjoyed life. The drive to keep fighting for another day was simply gone. The sparkle of life in his eyes had dimmed.
The process of accessing MAID was positive. It was judgment free and it provided the opportunity to reflect on the decision through the questions we were asked. At any point his decision to proceed could be changed, right up to the absolute end. I am incredibly grateful to our family doctor and the doctors and nurse practitioner who assisted with MAID for their incredible compassion and support through the process.
We were advised by our family doctor to inform family and friends so that my husband’s death wouldn’t be a complete shock. Our first reaction to this directive was “really?” and then “this isn’t going to be easy.” While initially it was a conversation stopper, we found that regardless of a person’s personal views of MAID, everyone was incredibly supportive of my spouse’s decision as they knew it was a reflection of his values and beliefs.
Some people say that the number of deaths from MAID is simply too high and society seems to have too easily accepted MAID. I would suggest that the numbers are a reflection of the fully informed autonomous decisions people have made.
Anyone who has held the hand and softly spoken to someone as they passed away knows it is truly special. Yes, it’s heartbreaking but it’s incredibly peaceful. Yes, the process of grief is difficult, but it doesn’t have to be viewed entirely as a bad thing. It is part of the life cycle.
So, would I make the decision to access MAID? I can’t answer that. I believe in it and definitely want to be able to have the choice. Would I be strong enough to make that choice? Until the time comes, I have no idea. In my spouse’s case, he had incredible fortitude and conviction it was the right decision.
No matter what, death will happen, and if we can improve end-of-life quality, then I say we should have the option to do what we believe in. This past year has been a journey to build a new life and I know my spouse’s spirit is along for the ride.
Carl McMurray lives in Toronto.