This is the third part of a three-part series on medically assisted death in Canada, chronicling legal columnist Celia Chandler's personal experience with assisted dying, in the wake of her partner's diagnosis of a terminal illness.
On January 29, rabble.ca published my summary of the status of medically assisted death in Canada from 1993 to the end of 2015, the time of my late husband Jack's cancer diagnosis. In the second instalment on January 30, I discussed how the end of Jack's initial treatment coincided with the introduction of medical assistance in death (MAID) legislation in Canada. I then picked up the story again in 2018 when Jack's cancer advanced to his brain and then, in September 2018, to his spinal fluid.
On November 15, 2018, Jack awoke and said to me, "I'm ready." I knew what he meant. Then he asked me if I'd be OK and I said, "of course." Death was inevitable anyway, and ending the suffering was clearly the best option for him and for me. I went into planning mode with two niggling fears: would he pass the capacity test? How would his kids feel about this? We gathered his two Canadian children that night and despite his best efforts, he couldn't really express his intention. I took over: they were shaken but ultimately fine. They had seen him lots in the last few weeks and knew that it would be the best outcome. His daughter Alexa contacted her half‑brothers in Europe and they too were very open. One commented, "it's like science fiction," and Alexa likened it to a C‑Section when you set a date for a birth. Both European sons said they wanted to be present so we scheduled MAID for November 19, allowing them a day or two to travel. Jack also wanted his sister (in Toronto) and his uncle (in Barrie) to attend. I had to tell them both and invite them to the event.
Needless to say, November 19 was a weird day. I asked everyone to give us the morning alone -- no personal support workers, no kids, no one. Jack slept on and off all morning in his "man cave" basement complete with smoking room, beer tap, 52-inch flat screen, toilet, and more recently, hospital bed, while I sat in the chair beside him watching Netflix. This was a pretty standard morning. From time to time, I'd crawl into bed with him and we'd have a few words together about how lucky we'd been to find one another. He drank a smoothie and ate a little Jell-O -- just a standard day.
Around noon, people started to gather. By 5 p.m. there were nine of us plus Jack and our two dogs in the basement. My own gang were gathered next door to support me after he was dead.
Funny thing about knowing death is happening -- I had called the funeral home that morning to give them a heads up that there would likely be a body later; as Jack's power of attorney I ran to the bank to deposit cheques into his business account because I knew I technically should not have access to the account after he died; and at 5 p.m. Jack got really alert and started to say things that I'd hoped he could say but wasn't sure he'd have the ability. He had a conversation with each of his people -- not long but just enough to say what he needed to. We had many toasts (Jack, double G&T; the rest of us, Prosecco). Jack and I sat holding hands with the dogs between us on the bed. It was the most intense time I've ever experienced.
At 5:45, with the doctor scheduled to arrive at 6 p.m., Jack went back to sleep. His son and I had seen him hallucinating a little earlier. I was panicked -- had the gin compromised his capacity too far? Would he pass the test? Was this all for naught?
Dr. Ed Weiss arrived a little past 6 p.m. He greeted Jack warmly and respectfully. He introduced himself to everyone else. He was invisible in the room in many ways, yet clearly the one with a lead role in this drama. He politely asked us all to leave the basement so that he could have a quiet moment with Jack, who'd awakened, thankfully. We all nervously went upstairs to the kitchen but were called back very shortly thereafter. All systems were "go," said Ed.
We gathered around Jack. I was sitting on the end of the bed with his legs across mine. Everyone else was around, although frankly for me, the room contained just Jack, Ed and me. Ed explained very clearly the three meds that he'd administer into the IV: one to sedate, one to slow everything down, and one to kill. It would take 10 minutes, he said. Were we ready? Yes.
As the first med was going in, Jack pulled me close. I was lying with my right ear over his heart with his arm around my back. All I could see was Jack's other arm with the IV line and Ed flushing the line and changing the meds. Never once did that arm flinch. Whatever ambivalence was there previously, there was clear resolve now.
I heard Jack's breathing stop, and then his heart.
A moment or two passed, and Ed pronounced him dead. I think it was about 6:45 p.m. I lay there a bit longer -- Jack's arm was still warm on my back. I don't know whether people were talking. I doubt it.
I got up slowly and looked at Jack's body. He was no longer suffering.
MAID is still new in Canada and relatively few people have had direct experience. Let me make a few observations from my own experience.
1. Following Jack's death, Ed contacted the Coroner's office by phone and during the course of that call I had to speak too to confirm that all had gone according to plan -- this before the body could be released. Although the process is legal, there is clearly still some reluctance to accept it completely. Or perhaps this is an important safeguard? It's unclear to me.
2. The funeral home had not dealt with MAID before -- by calling in advance to give them notice of an impending death, I threw their internal systems into a tailspin. I was later told this resulted in a brief time the next day when they weren't sure whether they had or didn't have Jack's body. I know that sharing the full MAID story with them in the week that followed helped them understand the process and will help them establish a procedure for future MAID deaths.
3. A very few people in Jack's life were not happy with his decision and I had to take the heat for it. I anticipated this and indeed was expecting many more people to pass judgment. The vast majority of people I've spoken with have commended his decision as brave. My 91-year-old mother has proudly told everyone in her retirement home and cuts to the chase -- she calls it euthanasia. Good on her.
4. I am entitled to a small death benefit through my group insurance. The form to apply for the benefit does not include an option for MAID. I ticked "natural" under "cause of death" and in the interests of full disclosure wrote "MAID" beside it; that led to an investigation and a delay in them advancing funds. On the one hand, I'm pleased to be able to help educate them so that future beneficiaries do not encounter this. On the other hand, I'm annoyed to be a guinea pig given that the legislation is now 18 months old.
5. At the celebration of Jack's life, where both Jack's daughter, Alexa, and I spoke about MAID, many in the room were surprised to learn that it is an option. I have vowed to help educate people -- there is no need for needless suffering -- and help people understand why the current legislation is too restrictive.
In December 2016, the federal government asked the Council of Canadian Academics (CCA) to undertake reviews of three topics related to MAID: requests by mature minors; requests where mental health issues are the underlying medical condition; and -- of particular interest to me -- advance requests. The CCA released their reports in December of 2018. The working group reviewed experiences of other jurisdictions and identified possible safeguards that could work to ensure that people do not end up receiving MAID against their wishes -- the primary challenge of allowing advance requests. I hope that these reports bring this issue to the fore again. I urge the Trudeau government to make it a priority to expand the right in a way that is sensitive to the concerns about administering MAID against patients' wishes.
I am very grateful to Jack for being clear with me that I could be public about the manner of his death. People need to understand what the current option is and its significant limitation regarding capacity. Jack very nearly lost his right to a humane death with failing capacity.
It's a needless and inhumane stress on patients and their families.
If you'd like to read more about Jack's remarkable life and death, please see his obituary.
Celia Chandler joined Iler Campbell LLP, a law firm specializing in co-op, non-profit, and charitable law, in 2005, and was called to the bar in 2006. Iler Campbell LLP is a law firm serving co-ops, not-for-profits, charities and socially-minded small business and individuals in Ontario.
Pro Bono provides legal information designed to educate and entertain readers. But legal information is not the same as legal advice -- the application of law to an individual's specific circumstances. While efforts are made to ensure the legal information provided through these columns is useful, we strongly recommend you consult a lawyer for assistance with your particular situation to obtain accurate advice.
Photo: Kate O'Connor/Sweetheart Empire
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