An Individual Choice

Categories: Advocacy, Living with Dementia|By |Published On: |

Calgarian Duncan McLean, who was living with dementia, made the decision to access medical assistance in dying earlier this year. Here, he shares what choosing to die on his terms meant to him

McLean with his wife, Genevieve. Photos courtesy McLean family.

McLean with his wife, Genevieve. Photos courtesy McLean family.

In November 2019, Duncan McLean began his journey towards accessing Medical Assistance in Dying (MAID). 

In 2017, at 55 years old, McLean was diagnosed with early onset Alzheimer’s disease. He left his successful career in IT equipment sales and marketing and, in hopes of helping both himself and others living with dementia, took part in clinical trials and advocated for dementia care through fundraisers and other initiatives. 

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Following the difficult news that a promising drug trial he was participating in had been cancelled due to insufficient effective evidence, McLean weighed his options and began looking into MAID. Since 2016, eligible Canadians have been able to access MAID through the passing of federal legislation Bill C-14. The word “eligible,” however, has been contentious, particularly within the dementia community, as imminent death as well as mental competence and the ability to make decisions immediately before the procedure remain a requirement. Advance requests are not available under current legislation, rendering most people living with dementia ineligible as they often lose their decision-making capacity long before they reach the required end-of-life status.

While McLean noted that he still felt healthy in many ways, he knew he wasn’t going to get better. He made the decision to pursue his right to die, and proceeding months were spent carrying out the necessary safeguard steps, including speaking with independent physicians to confirm eligibility. Once it was determined he was eligible, McLean scheduled the procedure, an administration of drugs, for mid-July 2020.

Two weeks before his death, McLean spoke with Dementia Connections about why he decided to exercise his right to medical assisted dying, and what the choice meant to him.

“I did notice that after the trial, things were starting to get a little bit harder than they were before, and then [started] realizing that there wasn’t really much anyone could do for me. I guess from my perspective, I didn’t want to end up going into a care home. If someone wants to do that, it’s their choice — I just would never want to do that. So that was my next play — what do I do? That’s when I started looking into this MAID thing.

“I had to go through quite a few people to get to where I wanted to be, and I felt like I actually was able to explain to them why I was doing this. And I sort of like the way MAID did it, because they actually did challenge me, which I think they should. But I got through that test.

“I had to go through a couple of doctors and a psychiatrist, and I had to walk them through what my life was like and what I wanted to do. And fortunately, they agreed. That was a big moment for me, because I didn’t want to have any hassles from other people. So that made me a bit happier, if you can call that happy.

“I’m not going to get better. That was the key for me — I knew that I wasn’t going to get better. And I also obviously wanted my family to continue their lives, because living with this is not good for anybody. Certainly, not for me, but also not for the other people in my family, who are sad, no question about it, but it’s time for them to move on, too. I probably could go on for a bit longer, but from my perspective, I’m not really interested in doing that.

“I believe in this. I think this is the right thing to do for the right person — I would not say, ‘You should do that.’ I would never tell anybody that. It’s a personal thing. I thought this through based on everything I tried. I really would have liked to overcome dementia, but there was nothing there, and there was no future for me. So that’s when I decided I’m going to deal with how I’m going to die. And fortunately, I think, I was allowed to do that. 

“This is my journey. I don’t want to be viewed as the guy that’s doing something crazy, which I’m not. Or pushing other people to go ‘Oh, I should do that.’ Keep on making your own decisions — that’s all I can say to that.”

“No one pushed me. It’s an individual decision, and individuals will make their own decisions. And that’s the way it should be.” [ ]

Duncan McLean passed away July 14, 2020 with family at his side.