(Photo by Valerie WINCKLER/Gamma-Rapho via Getty Images)
Before assisted suicide was legal in Canada, there was a secret society devoted to helping Canadians end their lives on their own terms. As Nicholas Hune-Brown reports at Toronto Life, even though medically assisted death has been legal in Canada for a year, it remains controversial. Although some palliative care doctors — who believe in providing physical and psychological comforts to patients, but not in hastening death — are vehemently opposed to what they view as an immoral act, other doctors are slowly coming to terms with the patient’s new right to die in cases where death is “reasonably foreseeable.”
In April 2016, four months after his diagnosis, Jack went to the hospital with pneumonia. When he got out two weeks later, he needed a feeding tube and a suction machine for his saliva. He could no longer look after himself, so he moved in with April, her partner, Robert, and their two-year-old daughter, in Smiths Falls, Ontario. The man who had always been a blur of activity suddenly needed his daughter to help him out of bed. The professional smooth talker had trouble speaking, a single sentence sometimes stretching out over excruciating minutes as he struggled for breath. On more than one night, he’d begin to choke, and April would have to call an ambulance to help clear the mucus building up in his throat, watching helplessly as a look of utter horror spread across her father’s face. When she took him to the bathroom each morning, he would say the same thing: “I want to die.”
Since Jack Poelstra, Gerald Ashe has overseen nine more deaths. He’s been there as Canadian families have invented new rituals for a new way of dying—reading poetry and listening to favourite pieces of music, watching as family members have taken turns giving their final hugs and kisses. When I asked Ashe if he was ever upset by the process, if it ever felt like a burden, he thought for a moment. “You know, I think I’m a pretty sensitive guy,” he began. “But I don’t feel upset about it.” The patients had been so sure, so appreciative. The families were so relieved. To Ashe, it was clear that it was something that needed to be done, and he was glad that he was able to do it with care and empathy.
On an adjustable bed in a room towards the front of the house is Tony Huelsmann, a retired dancer, choreographer and dance instructor whose skills were once in high demand at schools throughout Melbourne and Brisbane. Sandra was one of his dance students. He was 30 when they met, seven years older than her, and it was love at first sight.
Born in Germany, Tony has spent much of his life in Australia. Now 80, he is dying from complications associated with several internal and external cancers, including a rash of angry red squamous cell carcinomas that have colonised the skin of his swollen upper thighs. These painful sores require daily dressings, performed by a personal care worker, while Karuna’s rotating roster of nurses help with symptom management, bed-baths, toileting and bedding changes, as well as emotional support for both husband and wife.
Since May, Tony’s world-spanning life has been confined more or less to these four walls while Sandra cares for his every need. At night, she snatches sleep where possible. It is their wish for Tony to die at home and they are both determined to see this wish fulfilled.
“A good palliative care nurse should be invisible,” she says, while navigating her hatchback between house visits. “You’re there to help them negotiate the process with friends and loved ones. The Dalai Lama says compassion should be selfless: it’s not about you, it’s about them. You’re a springboard. But it’s a real dance: you’re not a robot, and you go in with your whole self and heart open. We’re all emotionally involved, and the moment you’re not – when it becomes mechanical – I think you should quit.”
By midday Friday, Tony has lost more strength and lucidity. Swollen from the waist down, he has little control of his body. Today, for the first time, he is unable to use scissors to cut the tape that his wife uses to dress his sores. When Karuna nurse Kate Hooper visits his bedside, Tony clocks her prominent baby bump. A man near death meets a woman weeks away from giving birth. Pointing a shaky finger, he smiles and rasps to her, “How long to go?”
In The New York Times Magazine, Jon Mooallem has a moving profile of doctor B.J. Miller, a triple amputee since an accident in his sophomore year of college, who’s now developing something he’s calling The Center for Dying and Living. Layered into the piece is a secondary profile of Randy Sloan, the late 27-year-old motorcycle builder who became a patient of Miller’s three years after he tricked out a bike for the doctor’s special needs. The former executive director of The Guest House, a Zen hospice center in San Francisco, Miller’s approach to palliative care is informed by his own near-death experience, and finding his way back to living.
It wasn’t that Miller was suddenly enlightened; internally, he was in turmoil. But in retrospect, he credits himself with doing one thing right: He saw a good way to look at his situation and committed to faking that perspective, hoping that his genuine self might eventually catch up. Miller refused, for example, to let himself believe that his life was extra difficult now, only uniquely difficult, as all lives are. He resolved to think of his suffering as simply a “variation on a theme we all deal with — to be human is really hard,” he says. His life had never felt easy, even as a privileged, able-bodied suburban boy with two adoring parents, but he never felt entitled to any angst; he saw unhappiness as an illegitimate intrusion into the carefree reality he was supposed to inhabit. And don’t we all do that, he realized. Don’t we all treat suffering as a disruption to existence, instead of an inevitable part of it? He wondered what would happen if you could “reincorporate your version of reality, of normalcy, to accommodate suffering.” As a disabled person, he was getting all kinds of signals that he was different and separated from everyone else. But he worked hard to see himself as merely sitting somewhere on a continuum between the man on his deathbed and the woman who misplaced her car keys, to let his accident heighten his connectedness to others, instead of isolating him. This was the only way, he thought, to keep from hating his injuries and, by extension, himself.