The abbreviated life of Lane Mandlis

It was the opening faceoff of the third period. Referee Lane Mandlis, who wore “skates like you wear shoes, six days a week” couldn’t drop the puck straight. Suddenly, he collapsed onto the ice. MRI imaging showed a single, ominous brainstem lesion which swallowed up his strength in a relentless march of paralysis that soon stuck him in a wheelchair. By 2019, seven years after the fall, he was bedbound. Forced to abandon his legal career, he struggled to survive on his $805 monthly CPP disability cheque as his wife, Moyra — herself disabled with psoriatic arthritis — racked up credit card debt to pay their bills. Isolated and wracked by constant pain, he couldn’t look out his window, which faced west and made the already warm room unbearably hot. “I didn’t even get to see the birds, or any people,” he said. The Christmas of 2020 would be his last. He would receive medical assistance in dying (MAID) by July, 2021—just in time to avoid the $500 annual co-payment to Alberta Aids to Daily Living. Read: Canada delays expanding medical assistance in dying to include mental illness, but it’s still a policy built on quicksand Three years after Parliament’s Bill C-14 legalized MAID for the terminally ill in 2016, Quebec’s Superior Court ruled the “reasonably foreseeable natural death” clause unconstitutional. Months after the court decision, federal statistics were released, indicating that 22,000 Canadians died by euthanasia—a contentious term—since C-14 was enacted. A signiﬁcant chunk—43.6%—of this population required disability support. Disability activists like Gabrielle Peters, a self-described (on her website) “disabled and poor woman,” pleaded with senators to scrap the bill, warning that it would fast-track them away from needed care towards state-sanctioned deaths. “[The bill] will result in preventable deaths of disabled people…I know they already happen because I was almost one of them,” Peters wrote. Instead of appealing Quebec’s ruling to a higher court, Ottawa introduced new legislation, Bill C-7, which allows death for those who aren’t dying. Read: What physician witnesses had to say at the special joint committee examining MAiD Ottawa enacted C-7 last March. A sunset clause allows the mentally ill to qualify by 2023. Legislators are mulling expansion to children. In the space of seven years, we’ve gone from repugnance at the idea of doctors ever killing their patients to loosening MAID criteria. Dr. Heidi Janz, a University of Alberta health ethicist, says that none of this is accidental. She says society devalues “human lives that are anything but self-sufﬁcient… the problem with this rhetoric is it makes it sound progressive, all about rights.” She calls this “systemic ableism.” I spoke to Mandlis via Zoom last April. He hadn’t left his room in two years. His rare condition — progressive solitary sclerosis of the brainstem — provoked spasms so violent they broke his jaw. He couldn’t even reach down to pet his rescue dog Charlie. From the $24.41 multiplied by 21.5 hours Alberta Health gave him daily, he paid the wages and CPP of private home-care workers — who, during the pandemic, often didn’t show up — to reposition him and change his colostomy. Luckily, he still had Moyra, who, he said, “doesn’t have to stay.” His wife-turned-caretaker, who spent her inheritance keeping him alive, devoted over a decade alongside Sophie, her daughter, to his care. Although his family brought him joy, he said they were often a reminder of how hard he’d made their lives. He requested MAID because his condition “makes life hell for all of us.” When I catch up with Moyra Lang, Lane has been gone four months. From her new place, down the street from their shared former home, she can see the North Saskatchewan River. Silver hair pulled into a bun, sporting a nose ring, she’s by turns furious and contemplative. She’s got a lot to be angry about. She laughs, memories coming fast and quick of the “germophobe” who stuck to his own cutlery and refused to swallow pills that bounced off his spoon onto the pristine T-shirt he changed twice daily. “Lane was brilliant. His mind was his greatest asset,” she recalls. A former electrician and ship’s ofﬁcer, Mandlis earned his doctorate in Sociology in 2011 before switching faculties at the University of Alberta to graduate with honours from law school. But his declining health prevented him from completing his articles, depriving society of an incisive legal mind. Moyra painted his walls the Benjamin Moore shade “Louisiana Hot Sauce,” to honour the vegetarian foodie who loved cooking for his family until he couldn’t. That’s when Sophie took over, dishing up favourites like spinach soup. Moyra recalls the past year’s intimacy when together they would read The Pagan Book of Living and Dying and make prayer beads to help ease Lane’s mind about his approaching journey. During his ﬁnal three years, she stayed up all night. Her never-ending battle for supports for a husband who kept getting weaker overwhelmed her. She developed post-traumatic stress disorder. “I felt totally consumed by the situation.” She couldn’t leave. “I loved Lane. Without me and Sophie, he would have died.” On Premier Jason Kenney: “I fucking hate the guy. He’s made severe cuts every year to the healthcare system. We had to ﬁght for every penny.” Having to evoke pity from bureaucrats was dehumanizing: “They’re all able-bodied people on these committees… it just fucked me up.” Her $100,000 debt has gone to a collection agency. She’s too tired to care. And she ﬁgures C-7 is “a form of new-genics. We don’t look real cute with our walkers. Society doesn’t want us… They’re not going to ﬁx the broken system—they’re just going to add another layer so people will choose death.” Lane, she says, “felt like a burden—physically, emotionally and ﬁnancially. That’s hard to live with.” Moyra supports his decision to die, and says he was not mad at MAID, but adds that “the suggestion that he had agency to choose this—it’s like an A or B choice. A is continuing to live in a situation that was unlivable. B is MAID.” Neither she nor Lane could imagine option C—a life with a future, mostly free of poverty and pain. Now 26, Sophie first met Lane at age seven. They visited the Muttart Conservatory for a ﬁrst family outing. She grew up quickly, helping Moyra by shopping and running errands. After Lane lost strength in his arms, it was “full on feeding him, lifting his cup for him to drink.” Moyra tried to avoid having Sophie change his catheter, but “if there was no staff and my mother was exhausted, I couldn’t just leave him there.” She sometimes felt resentful, frustrated that no one in her family could ever get a break. Sophie says she is a “big supporter of MAID,” and doesn’t believe Lane was pressured into death. Lane’s neurologist, Dr. Penny Smyth, ﬁrst met him as an athlete who practically lived at the hockey rink. She tried a drug called rituximab, which ultimately failed to help him. He told her in January 2021 that his life was “unbearable.” Smyth’s been a MAID assessor for some patients, but refuses to become a provider. She struggles to explain why. “I still have that part of myself that couldn’t actively do something that would stop them from living.” She’s spent her professional life ﬁghting to help her patients achieve the best quality of life possible. That’s what drives her as a neurologist. The Parliamentary Budget Ofﬁce projected $86.9 million of healthcare savings in 2021 alone by offering MAID as an option for Canadians instead of medical treatment. Smyth says “that’s not where I want to be with my patients,” but refutes the activist notion that utilitarianism is driving society’s expanding uptake of MAID from the terminally ill to the disabled. Janz is the health ethicist at the University of Alberta, and primary caregiver for her 97-year-old father. Her wheelchair hasn’t impeded her advocacy, either. She says (with the help of her assistant, Tyler) that human beings are interdependent “whether we like it or not,” but the legislation is moving society in a direction which views the lives of the disabled as inherently inferior. She’s adamant that the term MAID is misleading. “This is euthanasia. People get angry because it’s calling it what it is.” Next, she says the agency to choose MAID is a fallacy couched in noble-sounding concepts like dignity. “There can be no free choice to die for those with disabilities as long as there aren’t legal free choices in where, how, and with whom we live.” Janz says that Bill C-7 is “eugenics all over again,” that the Nazis ﬁrst sterilized the mentally and physically defective before deciding to euthanize them because they were “useless eaters.” Citing past atrocities, including Alberta’s forced sterilization history, infuriates her detractors. She chuckles; she’d love to discuss her litany of death threats, but it would take too long. She says that disability activists were “basically patted on the head” after their parliamentary testimony. Dying with Dignity Canada lobbied for the bill. She says most DWDC members are “able-bodied white people who are frankly terriﬁed of having to live like me one day.” Justin Marshall, press secretary to the provincial Minister of Community and Social Services Jason Luan, sent this statement: “Alberta’s AISH (Assured Income for the Severely Handicapped) budget is more than $1.3 billion.” But, because Moyra inherited a mortgaged condominium, Lane could not qualify for the full AISH maximum beneﬁt of $1,685 per month. Moyra recalls that hot, sticky July day, two weeks before his 53rd birthday. The house was full of friends singing. An indigenous elder led a pipe ceremony. Lane told her that he felt loved. “It was the ﬁrst time he’d had that amount of control over something in years. It was actually beautiful.” Before his lethal injection, he smiled, promising her, “I’ll see you again.” She’s grateful he was cushioned by love before going the way he wished to, on July 2, at 5:22 p.m. MST. She and Sophie stayed beside him until the funeral home attendants took his body away. Dr. Ferrukh Faruqui is a family physician in Ottawa. This article, a gold winner at the Alberta Magazine Awards, appeared in the April 2022 issue of Edify.

The abbreviated life of Lane Mandlis

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