Iler Campbell’s Pro Bono column for rabble.ca (where this article was first published in three parts) is no stranger to the issue of medical assistance in death (MAID). We have contributed to the discussion a number of times in the last four years.

What is new is that I can now provide a firsthand account of a medically assisted death. At 6 p.m. on Monday, November 19, 2018, surrounded by his closest family, my husband, Jack Sikorski, consented to a medically assisted death. Jack’s cancer had progressed and his quality of life was greatly diminished; he was grateful for the choice to prevent further suffering and die on his own terms, as he had lived. And I am profoundly grateful, too.

How did we get there, legally and personally? Part 1 of this article is a brief history of the legal battle to get MAID legislation in Canada which Jack and I watched from the sidelines as interested observers. Part 2 covers the time the legislation was introduced, which largely coincided with Jack’s initial cancer diagnosis. I also cover the spread of Jack’s cancer in early 2018 when MAID was already available in Canada. In part 3, I describe Jack’s final days and reflect on my experience with MAID.

Part 1: A brief history of the legal battle to get MAID legislation in Canada

The issue of physician-assisted death is one that has simmered in Canada for decades. The outcome of the Sue Rodriguez case in 1993 appeared to cement us as a country that would not allow people the option of a legal death outside the natural order. This despite the fact that people — including doctors — were helping others die on the down‑low for a long time. Exit Interview, a 2018 documentary on the life and death of John Hofsess, helps us understand this underground movement and likens his work to that of Henry Morgentaler in fearlessly furthering a cause about which he felt strongly and around which there were huge medical and moral issues.

Jack and I first discussed the issue on January 26, 2014 (although his children assure me that he’d talked about it his whole life). Our beloved boxer, Kora, had developed what our vet believed to be degenerative myelopathy, a progressive and incurable disease that ultimately leads to complete paralysis. Kora had begun falling over early in January and had awakened on January 26 in a pool of her own urine — this thing was moving fast. She had been a dignified old girl and her disease led to a loss of that. We left the vet after Kora’s euthanization reflecting on how we were able to provide for her the best death we could and how terribly unfair it was that we were unlikely to be able to do that for each other.

We were both physically well at the time.

A year after Kora’s humane and dignified death, together with the rest of the country, we were poised to hear what the Supreme Court of Canada had to say about euthanasia. Canadian Kay Carter, who suffered from a degenerative disease, was denied a physician-assisted death in Canada and ultimately went to Switzerland in 2012 to end her life, as so many others have done. (Writer Lawrence Hill’s moving article about his mother’s Switzerland death is worth a read for those who missed it last June). Carter’s daughter continued the fight to the highest court of the land, in the hope that the Rodriguez decision would be overturned.

In a January 2015 rabble.ca column, “Whose body is this? the right to die with dignity revisited,” lawyer Lauren Blumas wrote about a Winnipeg man who had been charged with criminal negligence causing death for allowing his mother, apparently at her request, to die a slow death rather than seeking medical attention. Lauren made a strong statement in favour of the Supreme Court reaching a “compassionate decision to advance the rights of terminally ill Canadians.”

The court did not disappoint. The February 6, 2015 Carter decision was unanimous: it called criminalization of physician-assisted suicide unconstitutional and said that competent adults with grievous and irremediable medical conditions should have the right to ask a doctor to help them die. The decision gave the federal and provincial governments until February 2016 to develop legislation to provide a framework to allow it. After his October 2015 election, Prime Minister Justin Trudeau mandated the Minister of Justice to make the Carter response a priority. See Safia Lakhani’s rabble.ca column November 2015 for a summary of the work that lay ahead. On March 2, 2016, Safia provided an update on the state of assisted-dying legislation in an article for the Ontario Bar Association. At that time, she noted that governments were still working away to come to a solution that would balance the various competing interests and that they would be unlikely to meet the already extended deadline set by the Court.

Part 2: Diagnosis

In December 2015, my personal world was torn apart when Jack, my partner of only seven years, 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.

Terrible news

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.

Final 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.

Part 3: “I’m ready”

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.

 

Reflections

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.

 

 

Filed in: Civil Rights, Human Rights

Tags: medical assistance in death, Pro Bono column, rabble.ca