This is the second 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.
In December 2015, my personal world was torn apart when my partner, Jack, was diagnosed with small-cell lung cancer. With the disease already in his lymph nodes, I knew that Jack's prognosis was not good. He received excellent and immediate treatment at Toronto's Princess Margaret Cancer Centre (PMCC). With chemo and radiation through the first half of 2016, Jack's cancer was arrested. We didn't dwell on the legislative changes in June 2016 that allowed for a medically assisted death, but we were both quietly following the developments with interest and were pleased that at least some Canadians were to have a choice to end life early in the right circumstances.
On June 17, 2016, Bill C‑14 passed, amending the Criminal Code to set conditions for patients to be eligible for a medically assisted death, and to establish safeguards against abuse.
Jack and I resumed normal life in late 2016, including a celebration with friends and family of our May 2016 elopement. We were cautiously optimistic about his health. Indeed, through 2017 Jack's health was fairly decent. Despite this, I attended a daylong seminar on medical assistance in death (MAID) in November 2017. Jack was unable to shake the heavy cigarette habit that undoubtedly caused the cancer in the first place. I wasn't fooling myself: I knew that Jack's health was not likely to hold. After that seminar, I summarized my learnings in a LinkedIn article. And of course, I shared it all with Jack, who continued to feel lucky that the law had changed, just in case.
By February of 2018, Jack's health was obviously failing and in April they discovered the cause -- the lung cancer had metastasized to the brain. More radiation shrunk "the bastard" (Jack's name for that tumour) but his symptoms worsened through the summer. The biggest impacts were on his voice -- he loved to talk -- and on his swallowing -- he loved to eat and drink. He spoke in a whisper and choked alarmingly at least once every meal.
On September 14, 2018, we got the devastating news that cancer was in his spinal fluid and that he had eight to 16 weeks to live. By then, we had been connected to the palliative unit at PMCC for some months and each time we spoke with them of death, Jack would ask them to predict what his death would look like. He didn't fear death but he dreaded choking to death. No one could assure him that wasn't the likely outcome. I was petrified, too, despite knowing that the ever‑analytical Jack was managing the swallowing mechanism very carefully (he was his speech pathologist's star pupil) and that I had, in theory anyway, been taught how to do the Heimlich manoeuvre. I felt so helpless, though, in the face of the real likelihood of a fatal choke.
Because of his compromised voice, Jack was not able to document the feelings he had then. Had he, I know he would have echoed the words of well‑known Toronto doctor, Donald Low. In 2013, before the laws changed, in an impassioned plea for more options for dignified death, Dr. Low recorded his thoughts days before he died naturally. I remember watching the video at the time but it is so much more powerful for me now. Low said: "I wish [the people who oppose medically assisted death] could live in my body for 24 hours and I think they would change that opinion." He went on to say:
"I'm not afraid of dying. I could make that decision tomorrow. I just don't want it to be a long protracted out process where I am unable to carry out my normal bodily functions and talk with my family and enjoy the last few days of my life."
On October 13, 2018, we celebrated the wedding of Jack's daughter. Accelerated due to Jack's health, it was a lovely affair with the reception at our house. Jack's eldest two sons and his sister flew in from Europe. It was a celebration of Alexa and Dennis' marriage but also of Jack's life and he threw all his energy into it.
Setting the wheels in motion
We had discussed a medically assisted death many times but three days after the wedding, it was clear his health was on a downward slope. I asked Jack if he'd like me to set the MAID wheels in motion for him so that he had the option available if he wanted it. We'd been following the story of Audrey Parker, the 57-year-old woman from Nova Scotia who chose to end her life earlier than she'd wished because of her fear that she'd lose capacity to consent to dying at the time of death.
The current legislative option is not without its flaws and some might say this is the biggest one of all. It is not enough that you consent in advance -- you must also personally consent at the time of the injection. You cannot assign that right to a substitute decision-maker. Parker told the CBC: "I think once I've signed the papers and have agreed, it should stand. But I still have to worry that if I lose my marbles, that they won't do it. And then I'm going to die poorly."
Parker's concern was the one that Jack and I had too. His capacity had begun to slip a little; he'd even had the occasional hallucination.
On October 16, 2018, at Jack's request, I contacted the Ontario Ministry of Health number to inquire about MAID. Within a few hours, I heard back from Dr. Ed Weiss, a family physician in Toronto's West End who also provides MAID deaths. Ed came on the evening of October 18 to assess Jack for MAID and deemed him eligible. That same night we called on two neighbours to witness Jack signing the MAID application, beginning the 10-day cooling period required by the legislation. Two witnesses who do not serve to benefit are required for every MAID form. On October 19, we had a hospital bed delivered and at the same time met with the funeral home at our house to put the final touches on the plans for a celebration of Jack's life. Heavy, heavy, heavy days...
Jack remained conflicted, though. On the one hand, he was signing a MAID application and on the other, not ruling out more tests and indeed, the possibility of more treatment for symptoms. This conflict in his "goals of care" reflects how very profound this decision is. This was all new language to me, but I gather palliative caregivers use the expression "goals of care" to help patients and their families sort out whether the patient is going to focus on the most comfortable way to spend their remaining time versus continuing to push for further diagnostics and treatment. Even someone like Jack who'd apparently talked his whole adult life about euthanasia wasn't fully resolved -- at least not then.
On October 24, 2018, one more doctor, Dr. Sun, came to the house and provided the second assessment required under the legislation, agreeing with Dr. Weiss that Jack was a candidate for MAID -- he had intolerable suffering, a grievous and irremediable condition with death reasonably foreseeable. And most importantly, the mental capacity to make the decision.
On October 30, 2018, Jack passed the 10-day cooling period. The process of weighing quality of life against decline of capacity was on. As the capacity worsened, I was deathly afraid for Jack that the window of opportunity would close. Every few days I would ask him if he was ready and he always shook his head, "no, not yet." From time to time he would be confused and say that I could make the decision for him when it was time. More evidence of capacity slippage, since he knew the rules as well as I did when in his right mind.
Throughout this time, I was carrying this secret. Although always forthcoming with Jack's kids about all other aspects of his health, I wasn't sure how they would feel about this one. They are, nominally anyway, a Polish Roman Catholic family. MAID still carries a stigma and I felt that outside my circle of assorted atheists and progressives, I was on shaky ground talking about his plans. I didn't want to have to defend an intensely personal decision, especially if it wasn't actually going to happen. I also felt that the message to his family should come from Jack directly. As his condition worsened, so did his ability to string together coherent sentences.
I continued providing exhausting and stressful at-home care to Jack, a fiercely independent man who didn't want to admit he needed care. I was weighing "will he/won't he" have a MAID death, and finally concluded that it was unlikely. His capacity continued to diminish and he seemed ambivalent. I started to investigate hospice care for someone who was very clear about wanting to stay at home -- it felt terrible but I knew that I was no longer providing the safest space for him and I had the support of his kids to move him if necessary. The hospices I went to, however, did not allow for MAID and so that too seemed a sign that it wasn't going to happen for Jack. Getting onto a hospice waiting list was a bonus since it triggered greatly increased personal support worker care -- 56 hours a week, up from the paltry seven that was provided before the decision to go on the waitlist. Suddenly I was given a chance to get sleep through the nights to allow me to provide better care during the day.
At the same time, Jack recognized that further testing and/or treatment was futile and the toll it took on him (and me) to get to the hospital for either was enormous. With his decision to stop having more CT scans and MRIs came increased clarity on Jack's "goals of care" -- it seemed that he was gearing up mentally to die. MAID was one option -- a natural death from cancer the other.
In the final instalment of this series, I give my very personal account from the moment he said "I'm ready" to the moment he died, along with my reflections on the process, the end and how MAID might be improved.
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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