During her 100 years on Earth, Barb Quinn’s mother, Eva, reliably enjoyed two things: dry humour and dry sherry. A British war bride who converted to Catholicism to marry Quinn’s father, Eva was stoic, forthright and non-religious. And when she decided in 2017 that she was done living, she asked Quinn, the middle of three children and the only one nearby, to help make it happen.
Quinn empathized with her mother, who feared both a rapid and slow decline. Eva was living in a care home in Victoria when she requested medical assistance in dying (MAID). At 100, she could see the writing on the wall, and she didn’t want to be bedridden. Quinn says that she had a very close and “very adult” relationship with her mother; she visited her five days a week. “I told her I would look into it.”
But when Quinn informed her older and younger siblings of their mother’s decision, she was met with a wall of opposition. Unlike Quinn and her mother, both siblings are devout Christians who questioned the logistics and the religious propriety of the procedure. “My brother thought he was going to be consulted,” says Quinn. “He was absolutely agog that this was something she could do individually.” Quinn kept telling her siblings, “This is not your decision; this is Mom’s decision… and she’s still of sound mind to make it.”
Quinn’s brother and sister ultimately agreed to travel from Ontario to be present for the death, arriving to stay in Quinn’s small apartment, which was suddenly consumed by tension. Quinn’s brother attended only after receiving his priest’s permission; Quinn’s sister spent the day trying to convince their mother to change her mind. “It was kind of pathetic,” says Quinn. “My sister’s very emotional, and she was just holding on to my mother’s leg while the rest of us were sitting around the bed.”
Their mother was unmoved. She received everyone’s expressions of love, leaned into the mild chaos and then turned to the doctor and said, “I think I’m ready to go.”
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Even after her mother’s death, Quinn says her relationships with her siblings remained strained: “I didn’t speak to my sister for a year.” Quinn ultimately paid for an online counsellor to bring the two of them together long-distance and forge a truce, though the topic of their mother’s death is still largely verboten. “We don’t talk about my mother very much because it just opens that can,” she says. “I have a positive relationship with my sister now, but it’s not the same and it will never be.”
Various polls indicate that Canadians generally view MAID favourably as a compassionate response to chronic, severe end-of-life pain, but the procedure can take on a very different meaning when it hits close to home. Little attention has been paid to the experiences of family and caregivers in the context of MAID — and how they might feel about a loved one’s choice to end his or her life.
In recent research conducted by the University of Toronto and the Princess Margaret Cancer Centre, a complex portrait emerges. Family members typically support the idea of MAID in the abstract but can struggle to integrate it into their individual realities. There are emotional challenges, including the excruciating toll of placing an end date on the life of a loved one. In a similar study published in Canadian Family Physician in 2018, a study respondent said, “The hardest thing for me was to see [her] so happy that she could choose to die, while for me it would be so sad to lose her.”
The details of who should access MAID, and how, are very much still being hammered out in the public and policy spheres. End-of-life stories, while always relevant, have taken on renewed urgency during the prolonged pandemic. The conditions created by COVID-19, including profound stressors on the health-care system, have slowed the ability to access MAID services. The pandemic has also created a more proximate sense of mortality, forcing some Canadians to consider not just how they want to live but also what they want the end to look like.
“I think that COVID has made a big difference in terms of opening up the discussion about death because so many people have become ill and are dying, and that fear of becoming ill and dying is more front and centre,” says Dr. Chantal Perrot, a MAID provider and the chair of the board for MAiDHouse, a Toronto non-profit that provides a home-like setting for MAID procedures.
Perrot also hopes to see a greater cultural acceptance of death, inspired in part by ongoing discussions about MAID. “There are more death doulas out there and people actually having death ceremonies,” she says. “The more it’s talked about, the more dying gets reintegrated into daily life.”
Yet we still struggle to talk details when it comes to the end of life — and how those details might plunge otherwise loving and supportive families into chaos. In 2020, a story in Nova Scotia shoved these issues into the spotlight.
Jack and Katherine Sorenson, of the small south-shore community of Bridgewater, had been married for almost 48 years, running two restaurants in nearby Mahone Bay before their retirement. (Jack was also a music teacher and CBC producer.) They were known for their kind and caring natures. But when Jack petitioned for and won the right to die with medical assistance, Katherine took him to court to try to stop him.
At 83, Jack was struggling with advanced chronic obstructive pulmonary disease and had only 49 percent lung capacity. He was approved for MAID, but Katherine, a Christian who opposed the procedure on personal religious grounds, asserted to the court that Jack should be disqualified from MAID because his problems were largely psychological rather than physical. Katherine’s bid was overruled by the Nova Scotia Court of Appeal.
While few cases are as dramatic as a legal battle between octogenarian spouses, Signy Novak is familiar with the confusion and hurt feelings surrounding a loved one’s choice to access MAID. When her father was critically ill with cancer and looking to end his life, Novak says her family had difficult questions about both the process and emotional ramifications — but they weren’t sure where to look for answers. This inspired her to start a peer-based not-for-profit, Bridge 4 You, that encourages conversations between MAID candidates, family members, friends and caregivers.
Novak, who is based in Burnaby, B.C., has a roster of 30 volunteers across Canada — all of whom have personal experience with MAID. They have also partnered with Bridge C-14, an Ontario group with a similar mandate. “We might get a question through the website like, ‘I’ve decided to do MAID, but I don’t know how to explain this to my kids so that they’ll understand,’” says Novak. “And then I pair them with someone who’s been in a similar situation. We’re not looking to solve their problem; we just want them to have someone to support them.”
Novak’s own father, a doctor who worked with palliative-care patients, knew exactly what he wanted at the end. “If his pain became too much and his cancer had spread too far, he did not want us looking after him,” she says. “He wanted to go while he was still fairly independent and while he could still get to the bathroom on his own and…still be clear in his head.”
Novak describes herself as “very lucky,” saying that the entire family was supportive of her father’s decision. But that doesn’t mean there was complete consensus. They struggled when it came down to details. Conflict erupted on the last day of her father’s life, a couple of hours before his scheduled death. One family member decided she didn’t want her kids to be present, which set off a debate over what was appropriate during those final moments. “It completely threw a wrench in things,” says Novak.
Even in the best of circumstances, with a supportive family, the details of MAID can be complicated. Objections can stem from any number of directions, including religious beliefs, unprocessed grief and generalized discomfort with death. Some family members can’t wrap their heads around someone they love choosing to leave rather than wringing every last moment out of life. Others might feel terror at the prospect of being left behind, of a new identity as an adult orphan or childless parent. Novak believes many of these complications arise from our stubborn refusal to drag the topic out of the shadows. “In western culture, we don’t talk about death freely,” she says.
Walking alongside a loved one who has chosen to end their life can be an extremely fragile time. “You’re not only having to think about losing your significant other or your parent or whoever, but you’re also grappling with your own beliefs around your own mortality,” says Novak. “You’re suddenly having to get your head around so many different concepts that you maybe haven’t even thought about.”
Added to these thoughts and emotions are the demands of the logistics: Are we planning a small wedding but for a death? We permit final wishes from the dying, but what are the living allowed to negotiate?
Popular media perpetuates a certain image of someone’s final moments: a figure in bed at home or in the hospital, blanket pulled up to her or his armpits, serenely fading as gathered family quietly weep and express their gratitude for a lifetime of love. But, as Jana Buhlmann of New Westminster, B.C., discovered when her partner was dying, neither people nor relationships grow less complicated simply because death is around the corner.
When Buhlmann’s then-boyfriend, Chris Walters, was diagnosed with stage-four colon cancer at the age of 40, he gave her the option to leave. “We’d only been dating a year and a half,” she says. “He said, ‘You know, you don’t have to stick around.’” But Buhlmann loved the larger-than-life banjo player. “I was in it for the long run, no matter what,” she says. They got married not long after his diagnosis.
Over time, as his illness and unhappiness intensified, she developed a sense of purpose in helping Walters advocate to end his life in a way he actively chose. But nothing about the situation was easy. Some members of his ex-wife’s family opposed his decision to access assisted dying and made a concerted effort to talk him out of it.
The criticism chipped away at Walters, and in his final hours he oscillated between complete resolve and crippling doubts. He wanted confirmation that he was making the right choice, but Buhlmann simply reminded him of his options. “Do you think I should do this?” he asked her. “Do you think I’m making a mistake?”
“His son’s phone was buzzing within the last 15 minutes before his procedure, [as] his ex-sister-in-law was trying to stop him,” says Buhlmann. “It completely distracted from things.”
Other family members had regrets that surfaced later. Buhlmann says she became close to Walters’s mother while he was sick, but after his death her mother-in-law sent an email implying that Buhlmann had rushed him to his death. Buhlmann just let it go.
Harder to navigate, she says, was the deterioration of her own relationship with Walters toward the end. Buhlmann says that he became angry, embittered and petulant. “A support group member said to me, ‘Would you let him treat you like that if he wasn’t sick?’…And that’s a complex thing that a lot of people experience. Do I let my loved one become abusive and unkind, and do I take that for months on end? What about me? All the lines blur.” The morning of Walters’s medically assisted death, Buhlmann kissed him and told him that she loved him. He didn’t respond.
Buhlmann was comfortable offering unconditional support, but some family members are unwilling or unable to do so, and that can create enormous pressure on the individual hoping to access care.
“One of the things that we, as assessors and providers, have to check for very carefully is whether someone is being coerced or pressured into receiving MAID,” says Toronto assisted dying practitioner Perrot. “And in my five and a half years of doing this work, I have had to deny eligibility to one person because they were being pressured to receive MAID, but [there] were quite a number of people pressured to not receive it.”
In the case of Nova Scotia’s Jack and Katherine Sorenson, the court ultimately rejected her attempts to derail his plan. The appeals court reaffirmed Jack’s eligibility for MAID, noting that “an individual’s response to a grievous and irremediable medical condition is a matter critical to their dignity and autonomy.”
In October 2020, Jack died with medical assistance at the Fishermen’s Memorial Hospital in Lunenburg, N.S. Katherine wasn’t present, and the couple no longer shared a home (though both continued to wear their rings after Jack moved out). Until their disagreement spiralled into the courts, Katherine said in a CBC interview that the two had often fallen asleep holding hands. Following Jack’s death, unwilling to let the argument rest, Katherine composed an obituary for a funeral home website and asked for donations to be made to the Euthanasia Prevention Coalition in lieu of flowers. She died in May 2021.
“You’re not only having to think about losing your significant other or your parent or whoever, but you’re also grappling with your own beliefs around your own mortality.”
Signy Novak
Perrot believes that practitioners can play a role in resolving these conflicts by helping those involved sort through their complicated feelings surrounding the process. “The practitioner can listen, express understanding and empathy, and, depending on their comfort and skill levels, help someone start to work through their issues,” she says.
She suggests doctors share their experience of other families who have gone through the MAID process, including the sometimes contradictory mix of ambivalence, fear, relief and joy, so that family members feel less alone. Perrot adds that practitioners can also explain what it means to support a loved one’s decision, and even guide them through how to say goodbye. In her experience, some of the most strident opposition boils down to one thing: You can’t leave me.
While Perrot has seen a range of collisions and confusion surrounding a loved one’s decision to choose MAID, she has also seen some beautiful transformations in these familial relationships. “They were able to set aside their own personal values and choices in order to support their loved ones,” she says.
Kathy Kortes-Miller also saw this in her research. She is a professor of social work at Lakehead University and specializes in palliative care. Through interviews conducted across Ontario, she found that caregivers, friends and family often came around and were able to offer their support to a loved one hoping to access MAID. “It generally aligned with thinking that this was a chance for people to have autonomy, to have a chance to die in the way that they wanted to,” she says. “And they wanted to respect that.”
Barb Quinn felt that way. She says that her mother’s decision to end her life was a final act of independence for someone who had been gradually losing control for years. Quinn watched as her mother expressed sadness and an increasing weariness with going through the motions. She saw many caregivers simply pat her mom’s hand and cluck their tongues. When her mother spoke with a MAID practitioner, she told Quinn that she felt like it was the first time someone had really listened to her in years.
The idea that Quinn could help her mother fulfil her final wishes meant that when her mom was granted access to MAID, it felt celebratory. Quinn wanted to do something special — one last indulgence for the mother she loved so much. “My mother was a war bride,” says Quinn. “She ate the crusts of bread and never took a taxi if she could take a bus.” Shortly before the MAID decision arrived, Quinn went out and bought her mother $250 shoes.
“I was telling her [that] it’s looking hopeful for the medically assisted dying,” says Quinn, “and she looked at me and said, ‘Geez, [you] shouldn’t have bought the shoes.’ And we [started] cracking up in the hallway of the nursing home; it was so true to form for my mother. It was the first laugh we had had in so long. And to find joy for both of us in each other, in that moment, you know, that’s what I remember.”
***
Sarah Treleaven is a podcaster and writer in Nova Scotia.
This story first appeared in Broadview’s June 2022 issue with the title “Difficult goodbyes.”
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Comments
Valerie Atkinson says:
Very well written and presented from both views! Thinking as a 72 year old with cancer history the info is helpful in future concerns. 🤔 🙂
Maria says:
It's kind of silly that pro-suicide advocates think that folks that are against the "procedure" can't accept the inevitability of death. I, for one, was very accepting of the concept, until I realized that ability to accept put me in the cross-hairs of others to use that acceptance as a way to coerce the public into believing that I should be murdered! No, I don't fear death per se, what I really fear is being sent off before my proper God-given time! By starvation and/or someone's misguided sense of. "mercy". By a doctor, no less!
Maria says:
How especially sad that someone felt he had to leave this would because he "didn't want people looking after him"! What a missed opportunity to learn the true meaning of family and community. Though at least we can be grateful that something so awful as euthenasia les even one person to raise funds for prevention so that others can learn that there is indeed reason to hope, even in the midst of pain and suffering, life doesn't lose its dignity and value. I'll pay for a world were life is valued and euthenasia itself is put to death. Where our focus can be on lessening the pain, not eliminating the person.