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At ground zero of assisted death

Nino Sekopet, an extraordinary end-of-life counsellor, on the questions he most often faces


 
Nino Sakopet. (Photograph by JC Pinheiro)

Nino Sekopet. (Photograph by JC Pinheiro)

Not long ago, one of Nino Sekopet’s clients told him something he thought he already knew. The man was living with unremitting pain following surgery on a brain tumour, and Sekopet recalls him saying, “You know, Nino, these conversations with you are like my remedy.” Sekopet nodded along. After four years providing information and emotional support to suffering people looking to end their lives, he’d seen what a relief it was when someone just listened instead of recoiling. But the man insisted that Sekopet didn’t understand his true meaning, so he explained: “After a conversation with you, I don’t have pain for a couple of hours.” Sekopet was overcome.

That client lived across the country and they had never met in person; like the vast majority of people Sekopet counsels, he was just a voice on the phone. Sekopet is the personal support program manager with End of Life Planning Canada (ELPC), a new independent charity that grew out of Dying With Dignity Canada. His phone line and email account are where the most profound psychological and philosophical concerns around dying converge with the most difficult pragmatic questions. He gets about 15 new inquiries each week from people who are suffering and want to know how to end their lives. Sekopet shares with his clients information that other people don’t have or won’t discuss, but he thinks of his job as simply sitting with people’s pain and fear, giving them permission to broach a subject still treated as untouchable. Now, with the looming June 6 deadline by which the federal government must enact a new law on assisted death, Sekopet is one of very few people experienced in the sorts of fraught conversations that are about to unfold in family rooms, doctors’ offices and hospices across the country. “I think the system is very unprepared for this tectonic shift,” he says.

Sekopet is 43, with a slight build, intense eyes, and a vaguely catlike quality to his presence—both calming and watchful. When he explains his work, the word he uses most frequently is “holding,” often accompanied by a cupped-hands gesture, as though he’s cradling a newborn. He believes the Canadian health care system is very good at “doing”—adjusting dosages, crafting treatment plans, darting into someone’s room to see to their momentary, concrete needs—but very bad at simply bearing witness to the end of life. “Nobody really recognizes that anybody who is dying is going through trauma,” he says. “Nobody is addressing that, and nobody is holding that with them, nobody is metabolizing that for them. Doctors don’t do that, nurses don’t do that, social workers don’t do it.”

Sekopet and his wife, Sandra, moved to Toronto from Croatia in 2004, and they each work in private psychotherapy practices. In 2012, one of his therapy clients was diagnosed with Parkinson’s disease. A Type-A businessman, the client asked Sekopet to research his options for ending his life rather than ceding that to his disease, and a Google search pointed Sekopet to Dying With Dignity. Their office was down the street from his condo, so he walked in seeking information. Sekopet’s client eventually decided to go to a euthanasia clinic in Switzerland, but before he could arrange it, he died due to heart problems.

Around the same time Sekopet was helping his client grapple with this, he and his wife lost their unborn child, deciding to terminate the pregnancy after doctors diagnosed their baby with severe health problems. The loss was devastating, but they felt so supported by the medical profession and the law that allowed them to choose what to do. “In its tragedy, it was an incredible experience,” Sekopet says quietly. He was struck by the contrast between the support they received because their grieving occurred at the birth end of the spectrum, and the orphaned experience of his client as he contemplated death. Dying With Dignity was looking for a case manager at the time, so Sekopet applied and got the job. (His role is essentially unchanged with ELPC, which was created to take over educational and support activities when Dying With Dignity lost its charitable status following a Canada Revenue Agency review of the political activities of charities.)

The first year Sekopet was in the position, around the time the B.C. Court of Appeal ruled that ALS patient Gloria Taylor should be permitted to seek an assisted death, Dying With Dignity saw a 40 per cent jump in new inquiries. Calls have continued to increase by about 10 per cent a year since, but people’s questions have shifted markedly with the legal landscape.

Before Feb. 6, 2015, when the Supreme Court of Canada struck down the ban on assisted death, most people who called Sekopet were planning to end their lives themselves and needed practical information. People have fine-tuned radars for knowing how deep they can go with a stranger, he notices: they feel him out for a while, until they realize he’s comfortable discussing anything that is legal. What he often hears in the voice of someone asking him how they can die is relief at simply being able to ask. “Nobody will talk about, ‘I want to die, what do I do?’ ” he says. “You are creating a space for the story to land—and it’s not a bad story. There’s no judgment, there is no, ‘We’re gonna pump your spirit up!’ You let them be who they feel they are in that moment.” At the same time, Sekopet carefully screens callers to ensure they are realistic, certain of what they want, free of instability or impulsiveness and able to provide documentation on their medical history.

Sekopet is keenly aware that he cannot say anything that could be construed as assisting in someone’s death (there is a boldface warning alongside his contact information, stating that his organization “does not encourage anyone to end their life, nor do they provide the means to do so”). Without risk, he can freely discuss two methods of inducing death that have been accepted—if obscure—components of the health care system for decades: voluntary stopping of eating and drinking, known as VSED; and terminal or palliative sedation, in which a patient is given powerful medications that relieve pain and will also cause them to die. Both methods result in peaceful but slow death, and each has limitations in terms of who may access them.

There are two other manners of death that exist in a grey zone because they fall outside the bounds of accepted health care practice. Here, Sekopet treads carefully. In consultation with lawyers who sit on the board of Dying With Dignity, the organization settled on a policy by which he will not introduce any new knowledge to people, but simply tell them to do their own research and come to him with questions. With the first method—death by medical drugs a patient procures himself—Sekopet’s focus has been largely warning people away. “There is a huge misconception out there that any cocktail of drugs, if there is enough of it, will end your life,” he says. “It’s really far away from being safe.” The other method, involving inert gas, is unappealing to many people because it is typically administered with a plastic hood over the head. Often, Sekopet’s conversations with his clients involve eliminating, one by one, the options they thought they had.

But since February 2015, inquiries from people looking to take their death into their own hands have nearly stopped. “It felt like the clouds are gone and the hope can finally descend,” Sekopet says of the Supreme Court ruling. Now, he gets just as many calls, but they’re from people who want to know the eligibility for physician-assisted death, what will happen once the new law is in place, who they need to contact and what paperwork they must have in order. He still has no easy answers.

Senior citizen in hospital bed. (Sean Warren/Getty Images)

(Sean Warren/Getty Images)

The top court suspended its ruling for one year, then granted Ottawa a four-month extension to sort out legislation. On April 14, the Liberal government introduced a bill more restrictive than the criteria in either the Supreme Court decision or parliamentary committee recommendations. During this four-month extension period, people may seek assisted death by petitioning a judge for an individual exemption. ELPC, Dying With Dignity and the BC Civil Liberties Association are helping those who cannot wait until June, with Sekopet acting as gatekeeper to screen those who meet the stringent criteria, but it is an expensive and onerous process. “I would not recommend that to my enemy, honestly,” Sekopet says. So far, at least four people outside Quebec—which has its own assisted death law—have obtained an exemption to seek an assisted death.

One of those people is a Calgary woman known as H.S. (her identity is protected by a publication ban). She and her husband, D.L., met while ballroom dancing when they were in their mid-50s; she was the prettiest woman there, so D.L. asked her to dance, and that was it: they fell in love. She was a psychologist with a social circle of white-collar professionals, and he was a plumber. Their 10 years together were the happiest of their lives. Three years ago, H.S. was diagnosed with ALS, and she didn’t want to linger in suffering, so she contacted Sekopet. D.L. promised his wife he would care for her in every way, down to ensuring that she could decide when enough was enough. Sekopet referred them to a Swiss clinic, and when they called, a doctor from Vancouver happened to be visiting the clinic. At the end of February, D.L. and H.S. travelled to Vancouver, and she died as she had chosen. “He wanted to help us get to where we wanted to go,” D.L. says of Sekopet.

Before Sekopet took this job, the two previous people in the position lasted six months and less than a week, respectively. He knows he would burn out quickly without his own therapist to help process everything the job opens up. In order to really connect with the pain of others, Sekopet needs to access his own, but he also needs to hold that in check so he’s not consumed by his own loss when he’s helping others. “Working on my own personal pain helps me a lot to be able to leave the work where the work belongs, and be a father when I’m a father,” he says. That’s where Ingo comes in. Sekopet and his wife have a 2½-year-old son who imparts the sort of all-consuming, in-the-moment joy only a toddler can.

Still, amid all the people he’s spoken with, there are those Sekopet can’t forget. “There are some families who are truly supportive internally, and they touch me deeply because they show me that’s possible,” he says. A Dutch actress with terminal cancer came to see Sekopet, along with her son. She was unflinchingly realistic and decided that in order to avoid lots of “bulls–t,” she wanted to end her life with VSED. Their conversation was almost buoyant with laughter, simply because that’s where that family was. “That’s a very light, almost funny, cheerful death that’s stayed with me,” Sekopet says.

It’s not always like that. He is in the odd position of building intimate relationships with people he will never meet, helping to shepherd virtual strangers through the most profound of life transitions. One client with cancer called him from a hospice before engaging in terminal sedation; the man signed off with, “I guess this is ’bye, Nino.” In a very real sense, there is a loss for Sekopet when a client dies, but in shades bittersweet. “Part of me is glad that he or she got what they were so hoping for, what they were waiting for,” he says. “And a part of me mourns for another life that ended. I think it has to be both, otherwise I’m fake.”

When asked how this job has changed him, Sekopet’s eyes fall into the middle distance. He puffs airs from between his pursed lips and raises his eyebrows; a full 20 seconds goes by. “I think I have the privilege, with the help of these people, to stumble on some really deep wisdom of life. And in day-to-day interactions, I am much slower than I would be otherwise. I’m more in contact with my empathy, and I’m also more in contact with my anger and pain. But I don’t see that as a bad thing,” he says. “I think I am becoming a much better human being than I would without that job.”

He just received a letter from the wife of the client who had told him their conversations alleviated his pain. The man died in a Swiss euthanasia clinic in early April, and his wife sent Sekopet a page from her journal on the day her husband died. Over the last five years, there were times when her husband was in such intense pain that he would look away from her, she wrote, and she would have to convince him that his gaze was welcome and draw him back to her. On the day he was to die, as he lay in his bed, it was her gaze that slid away, and he coaxed her, with a smile, to come back to him. She wanted Sekopet to know how much love was in that moment. “I can’t see that ever leaving me,” Sekopet says. His eyes redden and fill with tears, but his voice holds steady.


 

At ground zero of assisted death

  1. Good article. I hope that we have the option of a peaceful assisted death here- when WE want it- without having to go to Switzerland.
    Soon.

  2. Unfortunately, this proposed new medical-assisted suicide law in Canada does not include the acceptance of an advance directive, prepared when you have ‘just been’ diagnosed with dementia (you are still of a sound mind and well capable of making decisions) or earlier. The various stages of cognitive decline take a similar path (timing varies) for all dementia patients. In the late stage of the disease, the dementia patient will be in a vegetative state for 1-2 years or longer (being spoon fed pureed food, bedridden, and diapers changed by care aides). Usually the patient dies by choking, unable to swallow a food or liquid. You should be able to decide ahead of time when the end-of-life process can be started, such as, at the stage when you are unable to understand and communicate, or at a stage when you are unable to feed oneself, loose total control of your bodily functions and must wear diapers. The end-of-life legislation must include dementia patients. This legislation will not help my father, currently afflicted with Alzheimer’s disease, but could be an option for me and others who may be diagnosed with dementia sometime in the future.

    • I know all that, Michael, which is why I am keeping a close eye on my mental health (I am pretty old). If we cannot have assisted death here by the time I am diagnosed with dementia- I have enough saved to contact Dignatas and go to Switzerland.

      I am going to die with dignity.

  3. It will be a problem faced by 78,000 Canadian cancer victims THIS year.
    Young or old, female or male, rich or poor cancer doesn’t discriminate.
    Of the 20+ provincial and federal politicians and hospital CEO’s I have written to, only 2 have sufficient interest to answer…Bill Morneau & Dr. Philpott.
    Canadians deserve better…$12.9 billion was spent on security….2 Canadians died in 2014.
    Canadians who want their governments to change their priorities, it will only happen when we DEMAND it. Declare ‘a war’ on diseases. Fund cures & human trials to give hope to those suffering. Let those in incredible pain end their suffering.
    It is the right thing to do. DEMAND better from your politicians.

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