While we still can: The case for advance directives

A proposed law on assisted death will not allow patients to choose death while they remain able. Should it?

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Shannon Proudfoot. (Photograph by Natalie Castellino)

Kristine Johnston and her husband Jimmie Johnston are photographed at their home in Orillia, Ontario on May 24, 2016. (Photograph by Jennifer Roberts)
Kristine Johnston and her husband Jimmie Johnston are photographed at their home in Orillia, Ontario on May 24, 2016. (Photograph by Jennifer Roberts)

For years, one of Kristine Johnston’s favourite things in the world was listening to her husband, Jimmie, on the phone with his clients. Jimmie sold John Deere construction equipment, and whenever the phone rang, Kristine would delight in overhearing her husband—known far and wide as “John Deere Jimmie”—banter with customers. “I loved listening to his end of the conversation. Because he was so funny,” Kristine says, swooning. “Hilarious.” Asked if he was aware she was listening to his stand-up all those years, Jimmie gasps, “No!” like he’s mortally offended, though he plainly loves it.

Jimmie and Kristine are both 69 years old. They live in a cozy house on a sprawling rural lot outside Orillia, Ont., where the local wildlife provide evening entertainment while they sip red wine on their back deck or in the swing under the towering red maple out front. In conversation, the two of them are like ballroom dancers—always in sync, winding in and around each other, but never treading on each other’s toes. If Jimmie gets tripped up by something, he’ll say, “Kristine, darling?” with cheerful chivalry and gesture like he’s presenting her onstage, to draw her into the conversation.

Five years ago, Jimmie was diagnosed with Alzheimer’s disease. But, as he will tell you, with deliberately hammy melodrama, “There’s no anguish in this house. It’s not allowed.” One of his favourite expressions is, “Just press on,” and that’s exactly what they’re doing. This reads less like teeth gritted through tough times than it is simply an extension of the way they naturally function. In their family, that clear-eyed approach to life has always applied to death, too: they don’t want it to happen tomorrow, of course, but Jimmie and Kristine don’t fear mortality the way a lot of people do. After witnessing good deaths in their own family, they believe it can be a beautiful thing, a doorway that opens from a place of suffering or exhaustion to another of warmth and peace.

As Canada’s assisted-death law started to take shape, Jimmie and Kristine fully expected that it would include a mechanism by which Jimmie could set out his wishes while he was competent, to be acted on later when his disease progressed. Instead, when the legislation was tabled in mid-April, there was no provision for advance directives. “I couldn’t believe they had excluded that,” says Kristine. “Now is the time to be able to have the opportunity to make the choice, because you know what you don’t want to do, what you don’t want to have happen.”

But even while Canada is sorting out the exact shape of its legislation—which would restrict assisted death to competent adults whose death is “reasonably foreseeable”—there is another jurisdiction that provides a telling case study in the profound difficulties around dementia. The Netherlands has lengthy experience with assisted death, and it is one of very few jurisdictions that permit advance directives so that people may request assisted death on behalf of their future self. But in practice, acting on these is nearly unheard of. Most Dutch citizens are not even aware of that fraught reality. And it suggests that even if the Johnstons and other advocates prevail and the Canadian government does include such a provision in its law, there may never really be an option for Jimmie and other people like him.

Jimmie is a born salesman: charming and gregarious, he knew the company inventory so well, he once competed on a game show filmed at John Deere headquarters in Moline, Ill. Kristine ran their house in Orillia, and she and their three kids—Karen, Tim and Mara, all now in their forties—learned to just go ahead and eat dinner at 6:30 each night, because they never knew when Jimmie would be home from the road. “You could make it roll,” he says. “And in my mind, you always had to do that with a smile.” He was 35 years in the job when he decided to retire in 2006; computers and smartphones were replacing the phone calls Kristine used to love overhearing, and that just wasn’t for him. After retiring, he started his own company, buying and selling used equipment. Kristine managed all the computer files, and for five years, they did well running the business from home together.

Marlene Cuthbert of Mississauga was at the Toronto rally and voiced her opinion. About 80 supporters of Dying With Dignity showed up outside of the 361 University Ave courthouse as a show of support for doctor assisted deaths - with nine other rallies across the country - coinciding with the hearing at the Supreme Court hearing on the Carter case. Wednesday October 15, 2014. (Jack Boland/Toronto Sun/Postmedia)
Marlene Cuthbert of Mississauga at a Toronto rally on October 15, 2014. (Jack Boland/Toronto Sun/Postmedia)

At one point, Jimmie commented to Kristine that he didn’t feel as sharp as he used to. Still, from the time she began to notice him asking where the keys were, even though they were in the same cupboard they had always been, it took her a year to convince him to see the doctor. “As soon as he came home and said, ‘The doctor said I have mild Alzheimer’s,’ it just totally flicked the switch in my head and my heart,” she says. “It made things easier, actually, because I knew why.” That night was one of the very few times Kristine has cried about it.

A month after the diagnosis, on a visit to Tim and his family in Alberta, Jimmie told his son while they were on one of their usual father-son drives in the countryside. But each time he had a chance to tell his daughters—both live in Orillia—he couldn’t bring himself do it. He didn’t want to ruin Christmas or Mother’s Day, or burden them when they were dealing with something in their own families. Karen and Mara had noticed something was amiss, and finally, more than a year after he was diagnosed, Kristine told Jimmie she wasn’t going to duck their questions anymore. “Probably it was because I wanted that to be pushed back as far as it could and as long as it could,” he says. “You’re just giving yourself more time.”

Later, while Jimmie was away on a fishing trip, Kristine sent an email to their extended family and friends, some of whom had been asking questions, too. “So, whenever you may meet up with Jimmie or talk to him on the phone (don’t be shy to call), remember that he’s ‘still Jimmie,’ with his awesome sense of humour and his very opinionated views on life and the world,” Kristine wrote. When he came home, she read the email to him and told him she had to tell everyone. “Yeah, I know,” he said. They both had a little cry about it.

Related: Jo Aubin has Alzheimer’s. He’s 38.

The hardest thing, though, was when the doctor said it was time to turn in his driver’s licence. Jimmie was furious; for almost a week, he didn’t mention it to Kristine, but he was quiet and preoccupied. “He was a salesman on the road. He spent his whole life behind the wheel,” Kristine says. “That was just absolutely monstrous.” That was another rare day when Kristine cried.

Alzheimer’s hasn’t changed Jimmie and Kristine’s relationship—there are maybe a few extra “darlings” sprinkled around, but otherwise they’re the same best friends they’ve been for 50 years, discussing everything over morning coffee or evening wine.

One of the things they talked about, long before Jimmie was diagnosed with Alzheimer’s, was death. It’s always been an uncommonly comfortable subject for them. “We’ve always had a very easy outlook on death—looking forward to the experience, not necessarily wanting it to be today or tomorrow,” Kristine says. “Some people are just scared to death of death. We’re not.” And they’ve had experience with good deaths.

Her parents both had cancer and died without drawn-out suffering. Jimmie’s mother was 96 and spry to the end when she died in 2006, but she was simply tired and lonely with most of her friends and family gone; hers was the happiest funeral either of them have ever been to. “Death is, we think, sometimes a wonderful thing,” Kristine says. Jimmie’s sister, Lorah, was diagnosed with Alzheimer’s in 2009, and as she declined, she would often point skyward and say, “I just want to go home.” She experienced a rapid physical decline and died still knowing her family—something Jimmie and Kristine see as an enormous mercy.

Jimmie’s desire to avoid a drawn-out decline has never changed. “As things progress, as we’ve talked about, if you can’t know me or our kids or your good friends, if you don’t have control over your bodily functions, if you can’t even feed yourself, if you can’t speak, do you want to be lying there doing nothing, not knowing anything?” Kristine asks him gently. “Oh. Of course not, Kristine,” Jimmie says softly, puzzled by the obviousness of this. “He himself has said, ‘I’ll find a way. I’ll find a way when the time comes,’ ” she says. But all Kristine can think about is the book Still Alice, in which the formidable protagonist tries unsuccessfully to leave herself a trail of clues to enable her own suicide as her Alzheimer’s progresses. “Alice thought she was going to find a way, too,” Kristine says.

Advance directives were recommended by both the provincial-territorial expert advisory group and a joint House-Senate committee that examined assisted dying in Canada. Sen. Kelvin Ogilvie, co-chair of the joint committee, anticipated the government would introduce a “minimalist” bill to meet the narrowest possible interpretation of the Supreme Court decision—but he believes they “failed in that miserably.” There was “a clear collective decision” on the committee that advance directives were important, Ogilvie says. Some of the most compelling testimony came from family members or caregivers of people with advanced dementia. “We have to comprehend that it is not our feelings that we’re dealing with—it is the feeling of that dynamic individual, who knew they were likely to get to that state, and indicated that is a state of existence they do not want to endure,” he says. Still, Ogilvie says the Senate can only push back for so long in the face of resistance from the House, because he believes the bill needs to be passed before the summer recess.

Among those who presented at the committee was Mimi Lowi-Young, CEO of the Alzheimer Society of Canada. While her group “acknowledges the necessity” of an assisted-death law in Canada, they oppose advance directives, she said. “For those who care for them, it is difficult or impossible to know what the person with dementia comes to value over time, especially if those values are at odds with previously expressed desires,” she told the committee.

Related: At the ground zero of assisted death

Jocelyn Downie, a law professor who teaches health care ethics at Dalhousie University, says that lawmakers venture into the new and freighted territory of assisted death with tentative steps, which explains why so few jurisdictions allow advance directives (the Netherlands does, and Belgium and Luxembourg do only when a patient is irreversibly unconscious). She calls it “unconscionable” for the Canadian government to draft a narrow law that will push patients and their families to fight piecemeal for broader access through court challenges.

In the Netherlands, a 2002 law requires physicians providing euthanasia and assisted death to follow “due care criteria” and report deaths to a regional review committee (in Dutch, the acronym for these is RTEs). The law allows an advance directive created by a competent patient to replace an oral request once their disease progresses. There were 5,516 cases of euthanasia and assisted death in the Netherlands last year, and that number has been on a steady, gradual climb (it was 3,695 in 2011). The number of people with dementia seeking assisted death is tiny, but increasing as well: there were 109 in 2015, compared to 49 in 2011. RTEs do not collect data on how many deaths occur based on an advance directive, but a representative of the oversight body said the vast majority of patients with dementia were those in the early stages who were competent to consent, and there have been only “a few” cases of euthanasia in people with advanced dementia.

The extreme rarity of this reflects a profound disconnect between what the law permits, what citizens want and believe is available and what doctors are actually prepared to do. A study published last year in the Journal of Medical Ethics found that while 85 per cent of Dutch physicians could “conceive of” providing euthanasia or assisted suicide to a patient with cancer, just 40 per cent could see themselves doing so for a competent person with early-stage dementia. A smaller proportion still—29 per cent—could conceive of helping a patient with advanced dementia but no other serious illness to die if they had an advance directive.

Eva Bolt, a physician-researcher at VU University Medical Center in Amsterdam and lead author on the paper, says advance directives are the most well-known aspect of assisted death among the general public. Dutch society highly values autonomy, and she says people widely believe suffering should be relieved no matter what; so if palliative care cannot help, people believe they should have the right to choose death. But that view simply doesn’t square with the professional and moral dilemmas of a doctor faced with an advance directive from a patient whose severe dementia would make it impossible, for example, for the doctor to explain they were starting an IV filled with drugs that would end the patient’s life. “The euthanasia law is about giving physicians the opportunity to help those patients they feel comfortable with helping. And if they don’t feel comfortable, they don’t have to,” Bolt explained via email. “The Dutch public does not always understand this. Many have the misconception that they have written down their euthanasia wish in case of severe dementia, so things are settled.”

A 2011 study found just five of 434 Dutch elderly care physicians reported performing euthanasia on a person with dementia and an advance directive—but all of those people were still competent to consent, rendering the advance request moot. Thirty-five per cent of doctors in the study reported having treated a patient with an advance directive for euthanasia that they had not adhered to.

Rob Jonquiere is the Amsterdam-based executive director of the World Federation of Right to Die Societies, and a retired physician. Before he turned to teaching in the mid-1980s, he helped two of his terminally ill patients die, in the days when that was a legal grey area in the Netherlands. “I actually wanted at the moment of the injection to look the patient in the eye and say, ‘Is this what you really want?’ ” he says. Dementia presents a brutal Catch-22. “I sometimes say the doctor is prepared to do it at the moment when the patient is not yet ready,” Jonquiere says. “And once the patient says, ‘This is for me too much,’ the doctor says, ‘You’re past the point where I am prepared to do it.’ ”

He describes his country’s grappling with assisted death in stages of societal maturity: now that it’s been normalized for those with terminal physical illnesses, the Netherlands has the capacity to discuss more complicated cases, such as dementia or psychiatric conditions. His advice to Canadian colleagues contemplating the provision of assisted death to their patients mirrors that: helping someone to end their life is a heavy burden, so he recommends doctors begin with the most obvious cases of suffering. “I always refrain from using the term ‘killing.’ You terminate life—and actually, more than that, you terminate the suffering,” Jonquiere says. “Get used to that idea, because it is counter-human a little bit. It never will be a routine action.”

Related: Assisted death becomes the new pro-choice debate

Even if a provision for advance directives were to be added to the Canadian law, the Johnstons know it may be too late to benefit Jimmie directly, but they’d like to see the option available for others. The decency of this is so obvious to them, they seem baffled by the need for any further justification. “Because it’s right,” Kristine says. “Because it should be there. It’s right.”

In the meantime, there is grass to mow, a garden to tend and wildlife to watch. Jimmie has always been a fastidious journal keeper, and each year when he starts a new one, Kristine creates a custom cover. He likes something to grab his attention and get the day started off right, so Kristine always selects a few upbeat quotes she likes, and Jimmie picks his favourite. The 2016 edition is entitled: “A great deal of what we see depends upon what we are looking for.” When he was working, Jimmie used to fill his daytimers with notes on customer appointments and serial numbers. Now, he keeps a running census of the squirrels, birds and bats that populate their big backyard.

In the absence of being able to control things the way Jimmie would have liked, one day soon they will need to apply to get him on the nursing-home waiting list. But as Kristine is quick to remind him, that’s for a few years down the road, not anytime soon. Right now, it’s the perfect season for sitting together on the swing in the evening, drinking wine and watching the world go by.