Assisted Dying

Still sensitive—but now legal

By Christina Frangou

It was the summer of 2015, and Hanne Schafer—a 65-year-old Calgarian psychologist who loved opera and camping and her husband of nine years—decided it was time.

Over the previous two years, amyotrophic lateral sclerosis (ALS) progressively hijacked bits of her life: She stopped driving when her hands grew weak, quit ballroom dancing as her legs began to fail. The disease robbed her—a woman known for her strong viewpoints—of the ability to speak. She travelled in a wheelchair pushed by her husband, Daniel Laurin, and could communicate only by typing with some of the fingers of her left hand.

“She asked me, ‘Can you help me?’” recalls her friend, Mary Valentich, a professor emerita of social work at the University of Calgary, “And I said, ‘Of course I can help you. I’ll do everything I can.’”

They began a search for a physician in Canada who would help Schafer die.

Six months before, in February 2015, the Supreme Court of Canada had overturned a legal ban on physician-assisted death, ruling the law must be amended so doctors could help people with irremediable medical conditions to die. Federal and provincial governments were given one year to draft new legislation.

Valentich contacted professional medical organizations and patient advocacy groups across the country, even her provincial minister of health, but she couldn’t find a physician in Canada who would perform a procedure that was not yet legal. Valentich, Schafer and Laurin discussed travelling to Switzerland but feared Schafer would suffer on the trip. At several public meetings in Calgary on the upcoming changes to the law, Valentich stood up and asked if anyone in the province could help. With no new law yet in place, the answer was always no, not yet.

Then, in January, a hematologist in the Netherlands gave them the name of Vancouver physician Dr. Ellen Wiebe. Weeks later the ban was lifted, but with no provincial law in place, a court order was still needed. The trio spent $13,000 to take Schafer’s case to court—a significant sum of money to exercise a right the Supreme Court had already ruled valid, Valentich says.

On February 25, 2016, a judge in Calgary confirmed Schafer met the criteria to qualify for an assisted death. Four days later, Schafer, her husband and Valentich flew to Vancouver. In an ironic twist, Schafer choked badly while waiting at the airport; a stranger who knew how to use a suction device stepped in to help, perhaps keeping Schafer alive a few more hours. At 7 p.m. that evening, the trio arrived at the doctor’s clinic in the Fairview neighbourhood near the general hospital, knocking on the locked door after all other patients had left. Schafer lay in a bed in a 10th floor room as Dr. Wiebe administered a series of injections outlined by physicians in Oregon. Valentich and Laurin held Schafer’s hands.

I said, “Of course I can help you. I’ll do everything I can.” We began a search for a physician who would help my friend die.

“We told her, as you just keep telling people, that we loved her. What else can you say under those circumstances?” Valentich says. It took 40 minutes for Schafer’s heart rate to slow to a stop—a process longer than expected, says Valentich, because a pharmacist, on the advice of lawyers, did not provide the exact medications requested. Then Schafer “quietly fell asleep. It was incredibly peaceful.”

Over the next months, as Valentich grieved the woman who used to call her a sister, she asked the court to lift the publication ban on Schafer’s name, imposed during the application. Valentich promised her friend she would keep fighting so that other Albertans who wanted assistance to die would be able to do so more easily.

“It’s a promise I want to keep as long as I can because she wanted us to do this,” says Valentich.

Hugh Wallace was the first person to undergo a medically assisted death in Alberta. A Calgary-based engineer who’d run his business from a house he designed himself, he’d been diagnosed with multiple sclerosis in his mid-50s. That was the beginning of a series of losses over the next 20 years, says his wife, Evie. He lost his ability to walk (though he still managed a dog-sledding trip to the Arctic) and to go to the bathroom unaided. Eventually his eyesight faded. In 2015 he was diagnosed with small-cell lung cancer too aggressive to justify chemotherapy, with its toxic side effects. Within months, his tumour pressed on his laryngeal nerve and his voice disappeared too.

“That’s what made his decision,” says Evie Wallace. The Wallaces spent $15,000 in legal fees getting a court order.

“Going to court was very cold, very clinical, very law. There was no one to say ‘I’m sorry you’ve got this. This must have been a hard decision,’” says Evie. “It was a pretty crazy time. When I look at where Alberta has come in a year, I’m very proud of this province and what AHS has done.”

Hugh Wallace died at home on April 19, 2016, with his family, two physicians and a nurse.

In the first three and a half months after Schafer’s death, when Canadians still needed a court order to die with medical help, six people in Alberta underwent an assisted death. Requests picked up when the federal law came into effect on June 17, 2016, eliminating the need for a court order. Now, there are sometimes two or more requests a week.

In the 20 months since Schafer’s death, a number of physicians and non-physicians in Alberta have emerged who are willing to facilitate a medically assisted death. So have many patients who seek it. “Far more people came forward than we ever imagined,” says Dr. James Silvius, the lead for medical assistance in dying preparedness for Alberta Health Services.

In total, 197 Albertans (and more than 1,300 Canadians) have undergone a medically assisted death since the ban was lifted in February 2016. In nearby Oregon, which has a population similar in size to Alberta’s but has allowed physician-aided dying since November 1997, 1,124 patients died by self-administered lethal medication in the 19 years it’s been permitted. In the first year there were 16 deaths; in 2015, 132.

In Alberta, people who sought assisted deaths came from all regions of the province; 139 died in a hospital or hospice, another 58 in private homes. Most often they suffered from cancer, multiple sclerosis or ALS. Their average ages vary from region to region. Although the overall numbers are too small to discern trends, average ages range from 67 in the north zone, to 75 in the central area, and 72 and 65 in Calgary and Edmonton, respectively.

When a person in Alberta considers an assisted death, they can ask any healthcare provider or contact the provincial Medical Assistance in Dying Care Coordination Service by calling Health Link (811) or emailing the MAID team. They then undergo independent assessments by two physicians and/or nurse practitioners, arranged by one of the five “navigators” who are responsible for managing the healthcare team that works with each assisted dying case.

When someone makes a formal request for an assisted death, it must be attested to by two independent witnesses who know the individual personally. They cannot know or believe they are a beneficiary of the patient and cannot be directly involved in providing healthcare services to the patient.

The assessors must confirm the person seeking medical assistance—and by law, they must be at least 18—meets the following criteria: They are capable of making decisions with respect to their health; they are not being pressured into the request; and they give informed consent after being advised of everything that may be available to relieve their suffering. A person must have a grievous and irremediable medical condition, serious and incurable; they must be in an advanced state of irreversible decline; and their suffering must be intolerable to them and without relief. Their death must be “reasonably foreseeable”—though what that means is not precisely defined.

The person making the request and their family are interviewed separately to alleviate any concerns about possible coercion. Then there is a 10-day period of reflection between the signing of the request form and the provision of assisted dying. Immediately before being provided medical assistance in dying, the patient must be given the opportunity to withdraw the request. Although a detailed review is carried out at the end of each case to reflect on how to improve the process, Dr. Silvius says it’s too early to see consistent learnings.

Many Albertans have sought medical assistance in dying—“far more came forward than we ever imagined,” says Dr. Silvius.

At least 76 Albertans have been turned down for assistance in dying because physicians decided they did not meet the criteria set out in the law. Some of the more common reasons for ineligibility include a mental health diagnosis, loss of competency to give informed consent or lack of evidence that death is “reasonably foreseeable.” Under AHS policy, someone deemed ineligible can seek a second opinion and request reassessment “at any time.”

Medical assistance in dying is often known as MAID, though the term is contentious. Some, like AHS’s Dr. Silvius, feel the acronym is too glib for an act fraught with emotion and complexity. Even now, MAID is a sensitive and controversial idea, delicate and difficult. Physicians who have performed MAID and family members who have witnessed it say it is an experience requiring compassion and an intense personal connection between provider and recipient. One physician recounted a story from a colleague: While giving the fatal drugs to a patient for a first time, the doctor got blood on her hands. After the procedure she sat in her car, looked at her hands and sobbed.

At the same time, this is a process coldly constrained by federal legislation. Healthcare workers are required to make decisions about a person’s eligi-bility based on black-and-white criteria where conditions are often grey. The procedure involves administering a series of medications that many physicians have little familiarity with and that are most often injected intravenously. (No one in Alberta has, to date, chosen the other option: ingesting pills. This technique carries a risk of choking and still requires a doctor to be there.) It is a patient’s legal right to request and receive assistance in dying if they meet the criteria; equally, it is the right of a healthcare provider not to participate in a medically assisted death if they are uncomfortable with it. Many are.

Dr. Eric Wasylenko, a palliative care physician and clinical ethicist in Calgary, helped formulate AHS’s assisted dying program although he himself is unwilling to help a patient die. “It is against my moral commitments to patients and myself and my profession,” he says, “but I will not abandon my patients and I will not judge them about their own choices.” He talks with patients about assisted dying, tries to understand their values and beliefs, and provides any information that can help a person figure out how to proceed, without, he says, trying to convince them of his point of view.

Healthcare providers volunteer to be part of the province’s MAID teams and are compensated on an hourly basis (with the maximum number of hours capped). Although compensation varies widely by case and by province, one estimate put a typical Alberta rate for the procedure at $621.60.

Dr. Silvius accepted the role as the lead for the province’s MAID program not because he believes in it—he claims to have no opinion—but because he considers himself an advocate for individual rights. “It struck me that if people were coming forward asking for this, providers were going to be put in sometimes uncomfortable situations and we had to figure out a way to support the needs and also the rights of both individuals asking and providers who may choose not to participate…. We took that approach right off the bat.”

One physician, who asked that her name not be published, has helped two patients to die. This physician—I’ll call her Dr. Sarah Martin—has also been involved in three cases where a person backed out or failed to meet the criteria.

In the days leading up to the first case, Dr. Martin couldn’t sleep and started grinding her teeth. A nurse had told the patient he would go to hell for ending his own life, and she worried colleagues and patients might say the same to her. “You don’t want to feel like people are thinking you’re a bad person, that what you’re doing is something sinful and evil,” she says. “There are definitely people who feel that way, but I’ve come to a place now where I know in my heart that it’s not.” Instead, she says, MAID alleviates a person’s intractable suffering. “Initially, you keep thinking to yourself, first do no harm, first do no harm. Having done it twice now, you come away feeling like you did the right thing. You did no harm.”

A nurse who has participated in medically assisted dying and who also requested anonymity argued that keeping someone alive when they are suffering is a form of harm. “There’s a fine line we all tread between doing no harm and forcing on someone an existence that no one would ever want themselves. That in itself, I believe, is one of the worst types of harm we can do… It’s our responsibility to help people not only to live when they want to but also to help them die with dignity and autonomy when we can.”

Dr. Martin says no two people make this choice for the same reasons. It’s the job of healthcare providers to explore who the patient is and the context of their request. “Make sure they’re not vulnerable,” she says. “Make sure they’re making this decision for the right reasons… The more you do, the more challenging it will get, because you might think you know that person’s story but you never know that story.”

Doctor Nadeem Bhanji, a psychiatrist and a clinical associate professor at the Uni-versity of Calgary, has been involved in assessments of two patients who applied for MAID. One ailing woman had survived much longer than expected. Because Dr. Bhanji found her confused, he felt she was ineligible and declined the request. “It’s a very tough decision… If you over-call, you could take somebody’s life unnecessarily. If you under-call, meaning that you deny somebody the right when they have repeatedly wanted it, that certainly hurts as well.”

In Canada, people with mental illness only qualify for an assisted death if they also have a physical condition that meets the criteria. Mental illness alone is not enough. Patients with conditions such as dementia are ineligible because their capacity to make decisions is questionable. A person with mild dementia, however, can still make important decisions, says Dr. Bhanji. “Refusing MAID for those individuals because they have a condition of dementia or depression is in other ways also harmful because we’re saying you have a mental condition and therefore you cannot exercise your rights the way other Canadians do. In a way, isn’t that discrimination?”

The patient’s death must be “reasonably foreseeable”—though what that means is not precisely defined.

Valentich, as well as the advocacy group Dying with Dignity, argues people should be able to request an assisted death ahead of time through an advanced directive. That way, if a person becomes incapable of giving their informed consent because of dementia or another illness, they could still die in a manner of their choosing. But the proposal is controversial. The Provincial–Territorial Expert Advisory Group, which helped advise the various governments on legislation, was split over the issue of advanced care directives. The group did, however, recommend that substitute decision-makers should not be given legal authority to consent to an assisted death on behalf an incompetent patient.

Another doctor who asked me not to use her real name (to protect her patients’ identity), whom I’ll call Dr. Alison Counter, practises in Calgary, where she primarily looks after patients with addictions and mental health issues. Many of her patients are poor, some homeless. In the last year, she assessed three who requested an assisted death and watched as one died. She’s impressed with the program—it’s sensitive to proponents and opponents of MAID alike; the healthcare providers who work with the service are well supported, as are the patients and their families.

Yet vulnerable populations concern Dr. Counter. “I worry that people who live in shelters or on the street who don’t get access to appropriate care early on could choose (an assisted death) because that’s what’s covered,” she says. “I haven’t come across it myself but it’s something that’s deep in the back of my mind.”

Counter, Valentich and other advocates for MAID are also uncomfortable with the number of publicly funded institutions in Alberta that do not provide assisted death. Faith-based hospitals and hospices do not offer assisted dying, saying it runs counter to their religious beliefs. Rural health centres, meanwhile, often have no provider in the community willing to perform the procedure.

A patient can make a request for an assisted death to a healthcare provider in any hospital or hospice, says Dr. Silvius. The request goes to a navigator who finds physicians to do the assessments and provide the service. A patient at a non-participating site who asks about MAID or sends a message online will be connected with a navigator. If the person is deemed eligible, they’re then transferred to a participating facility or the patient’s home.

The numbers suggest people in areas with a higher number of faith-based facilities have no more difficulty accessing help in dying than elsewhere. In Edmonton, where 90 per cent of palliative and hospice beds are run by Catholic-based Covenant Health, 72 people have had an assisted death—all carried out in the non-faith-based facilities, suggesting that patients are transferred when necessary. Calgary, with far fewer faith-based facilities, has had 70 assisted deaths. By late summer 2017, 22 patients across Alberta had been transferred from faith-based facilities and four from non-faith-based ones to a participating provider or their own home to receive medical assistance in dying.

Gordon Self, the vice-president of mission, ethics and spirituality at Covenant Health, says staff are, by policy, not to try to influence a patient who requests information about an assisted death. “We ensure that we respect that choice, not stand in their way, ensure that they have timely access to the care coordination system.”

Still, many advocates feel patients should not have to be transferred from a publicly funded institution to undergo a medical procedure that is their right. “The idea of having to be transferred to a hospital bed or something to have this happen is unnecessarily potentially distressing, let alone if there are pain issues with being moved,” says Dr. Counter. “I know of situations where people have had to be moved and that was a stressor on them.”

In her Calgary home, Valentich keeps stacks of photos and newspaper clippings of stories about assisted death. She monitors the news closely and runs workshops on assisted dying. When the Alberta College of Social Workers sent a message to their members that they were not to raise the issue with clients, Valentich led a successful charge to have the policy changed. She hopes to see other professions follow suit, especially more lawyers willing to represent clients who are denied assistance in dying. She attends public meetings—at times, just to get the ear of someone who can effect change.

Alberta, she says, has experienced a revo-lution on the issue of assisted dying but there is room to grow. To her it is a question of social justice.

“Those who are denied—I think that’s the group we have to pay attention to. Why are they denied and how are they living?”

She’ll keep asking questions until she’s satisfied. That is, she says, her promise to a friend.

Christina Frangou is a Calgary-based journalist who specializes in medicine, fitness and health.

 

 

 

 

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