When assisted dying means you have to go before you’re ready

0
429

Grappling with Alzheimers, Leila Bell decided to end her life. She used her final days to call on Canada to change its rules

Leila Bell, an 85-year-old great grandmother in Vancouver, decided the circumstances of her death warranted one last act of advocacy.

She told a handful of close friends, her psychologist and her doctor about her plan. Her long-time confidante Sarah Townsend made the arrangements.

On 22 August 2019, six days before the day Bell was scheduled to die, a freelance photojournalist and an interviewer met Bell at Townsend’s home. Bell sat in an armchair in the living room, wearing scarlet lipstick and freshly styled hair for the camera, and, looking straight ahead, described her plight.

She wanted to live longer, she could live longer, but she had to die now. Otherwise, she risked losing her chance to die with dignity. In order to meet the Canadian regulations for medical assistance in dying, known as Maid, Bell had to die before she became any sicker.

This, she believed, was wrong, as she explained on camera. “This is my last activist …” she said into the camera and paused, searching for the perfect word. She smiled when it came to her. “… Offering.”

Bell had been diagnosed with early-stage Alzheimer’s disease 16 months earlier. She had watched her mother die from the same disease decades before. Near the end, her mother couldn’t recognize a table, chairs or her own daughter, Bell recalled. During those visits, Bell told herself that she did not want her family and friends to endure the stress of caring for her if she ever developed Alzheimer’s.

“I remember how awful it was to see the deterioration of this woman who lost everything, every part of her ultimately except her shell,” she said.

Bell first noticed something amiss when she was 82 years old. She’d lose her line of thought while reading, “and reading was one of my, since childhood, my favourite things to do”, she said. She was taking university courses in writing and philosophy at the time, and dropped them because she couldn’t concentrate.

She saw a doctor who gave her the diagnosis: Alzheimer’s disease, early stage.

Bell, who lived alone, saw herself changing in the months after her diagnosis. She got physically lost going shopping and mentally lost during conversations. She grew frustrated when she could not find the perfect word or figure out her way through a problem.

Leila
Leila Bell. Photograph: Avril Orloff

Solving problems was her job: she’d been a lifelong activist who had advocated for breaking down barriers to women in the workplace since the 1970s. “I never marched or burned my bra,” she said, but “my concern about the status of women in society was a very key one. I tried everything I could to have an impact on that.” She marched in gay pride parades long before most politicians dared to, dyeing her hair purple in support of the LGBTQ+ community.

A single mother of three, Bell put herself through university at night while working full-time. She went to become a high-ranking civil servant, overseeing more than 700 employees in the province’s health commission. After retiring, she was wooed back to work for a year, a job she did partly pro bono, to help a not-for-profit organization that supports women and at-risk pregnant teens.

Other people might be more easygoing about fumbling for the right word but Bell was not, she said. She was becoming uncharacteristically emotional and found herself weeping in public. “This is thwarting me … one loss piles on top of another loss, and until it gets to the point where, being a human being of my nature and type, there’s scarcely anything left in it,” she said. “I don’t know how best to explain that.”

She recognized that her disease was worsening and, in May 2019, she made the choice to apply for an assisted death before she lost her independence.

The problem, as she saw it, is that Canada’s Maid law currently only covers people who have the capacity to give informed consent on the day of their death, so a person with advanced Alzheimer’s is unlikely to qualify. What’s more, it is impossible with a disease like Alzheimer’s to predict when a person will lose their capacity to consent. The rate of change can be unpredictable – often, an event like a fall or an infection can suddenly speed up decline.

“Perhaps if I had another illness, I might know [when] I was going to die. So I might be told by a doctor, you have another two months, three months, six months. I can’t be told that,” Bell said.

She weighed the decision privately before she set a date. She feared making the wrong choice – of waiting too long and missing out on the chance to have medical help in dying, or dying too early and missing out on time with those she loved, including her grandchildren and great-granddaughter.

In the video, Bell is razor-sharp, logical and unemotional. She speaks in sentences of complex structure – contrary to the commonly held stereotype of a person with Alzheimer’s. When she laughs, she throws her head back with delight. But for most of the two hours, she delivers her message with sobriety, arguing that the more than 500,000 Canadians with Alzheimer’s and other dementias should be able to make advanced requests for medical assistance in dying.

“If I had been able to do an advanced request, I would not have had to decide to make that decision to die now,” said Bell. “I have been forced to decide now because I fear that at some future time, I will not be able to request it due to the compromise in my brain being much more severe.”

You can hear her explain how sure she was:

In 2016, the Canadian government passed a law allowing medical assistance in dying.Nurse practitioners or physicians can assess a person’s eligibility for Maid and carry out the procedure, and it is covered by the country’s publicly funded health system.

But there are restrictions. To be eligible, a person must meet certain criteria: they must be candidates for health services funded by a government within Canada; they must be at least 18 years old and capable of making decisions about their health. They must have a “grievous and irremediable medical condition”. The request must be voluntary, and the person requesting it must be informed of all the means available to relieve their suffering, including palliative care.

And, finally, they must give informed consent at least twice: first, on the day they are assessed for eligibility and again, after a minimum 10-day waiting period, on the day they receive Maid. To give informed consent, a person must have “capacity” – a medical concept demonstrated by skills involving memory, judgment and decision-making.

Many supporters of Maid in Canada feel the law is too restrictive. They want to see an end to the requirement for informed consent on the day of death. They want the law changed so a person could make an advanced request for Maid – a modification called Audrey’s Amendment, named for Audrey Parker, a Halifax woman who opted to die earlier than she planned because she worried her cognition was beginning to falter, as a result of her incurable cancer.

“In cases like Leila’s and Audrey’s, and a number of other cases across the country that we know about, people are fearful that they will lose capacity and therefore they get medical assistance in dying early,” said Jim Cowan, a retired Canadian senator and board member for Dying With Dignity Canada.

Leila
Leila Bell at home, before she chose Maid, giving her last interview. Photograph: Sad Hill media /Jennifer Van Evra

Since Canada’s Maid law came into effect in June 2016, more than 13,000 Canadians have chosen to die peacefully with the help of a physician or nurse practitioner. It is unknown how many more people were assessed and approved but lost capacity before the procedure was performed, said Cowan. “They continue to suffer intolerably, which is bizarre.”

Last month, the Trudeau government introduced a bill to make amendments to the legislation, following a public consultation in which more than 300,000 Canadians participated. If passed, the bill would allow advanced waivers for people who are nearing the end of their lives – meaning, under certain conditions, they would not need to give final and informed consent for an assisted death on the day they died. This would achieve Audrey Parker’s dream.

But the amendments would not achieve Bell’s wishes. She hoped that people with dementias would be able to write advanced directives setting out the conditions that would trigger their medically assisted death.

Bell wanted to wait until she met the criteria for mid-stage Alzheimer’s.

“Leila wanted to be able to set out a condition in advance, not a date,” said Townsend.

A parliamentary review of Maid is scheduled to begin by June and will consider further amendments to assisted dying in Canada, including eligibility for people with conditions like dementias that could affect their decision-making capacity at some point in the future.

Dr Jennifer Gibson, director of the University of Toronto Joint Centre for Bioethics, called for more discussion about advanced requests in the context of dementia, but she was happy with the direction Canada was moving.

“We’re going to need the runway of some time to think about … how we might be responsive to the interests of persons with dementia who want, like the rest of us without dementia, to be the author of the ends of their own lives,” she said.

Informed consent can be difficult for someone struggling with a terminal illness. Cancers tend to follow a general trajectory – the body declines but the mind remains sharp until closer to the end. A person with cancer is an alert witness to their changing body, able to track their own degeneration and make informed decisions about their medical care until closer to the end.

Their capacity can deteriorate, and quickly. A combination of disease and medication can wreak havoc with their thought patterns. This is not uncommon in the advanced stages of cancer: patients become drowsy and confused. They forget where they are and what is happening. Even if they have already been approved for Maid, they may be unable to engage with a physician on the day of their planned death to affirm, with certainty, that they understand the stakes, to say this is how and when they choose to end their life.

It is different for a person with any type of dementia, including Alzheimer’s. Someone with Alzheimer’s loses their cognitive function progressively, often over years. Their ability to give informed consent can disappear long before their body nears its natural death.

It’s that long period of uncertainty, of living without capacity, that Leila Bell feared.

Leila
Leila Bell at a climate march in 2015. Photograph: Leila Bell at a climate march in 2015.

For 40 years, Bell supported the right to die with dignity. She longed for assisted dying in Canada before it was legal, as she watched some of the people closest to her die. In 1991, her second husband, Clare, to whom she’d been married for nearly 20 years, died from complications following a heart attack. Leila fell into deep depression and moved in with her best friend, who later died from diabetes. In 2002, Bell’s 49-year-old daughter, Anne, developed an unusual gastrointestinal condition and died, after being cared for by her mother.

“I always felt people should have the choice of an assisted death,” Bell said. “We have our own lives to live and we have a right to live those lives in the way we want to as long as we’re not hurting anybody else.”

When it was time, Bell sought out Dr Ellen Wiebe, a well-known supporter and practitioner of Maid in Vancouver. Wiebe was the first physician in Canada to perform Maid outside of Quebec. After several appointments, Wiebe told Bell that she was eligible for an assisted death but she’d have to die earlier than she would naturally. Wiebe could see Bell’s capacity deteriorating. “She was at risk within a relatively short time of losing capacity,” said Wiebe.

Bell chose a date in late August. She wanted to squeeze in as much time with her family as she could before she died. In June, she flew her two grandchildren to Vancouver. She sat them down and handed them a letter she’d written, explaining her diagnosis and her decision. She wrote that she did not want them to remember her like she remembered her mother in the last stages of Alzheimer’s. They pushed back; they said they didn’t see any change in her. They held her letter up as an example of her high level of functioning.

Her granddaughter Erin Spence, who has one daughter and is now pregnant with a second child, told her grandmother that she wanted her children to know their great grandmother. She and her brother were not opposed to assisted dying but they could not wrap their minds around the immediacy of her decision.

“We just felt like, ‘Why do you do have this now?’” said Spence. “I didn’t notice any difference in her, to be perfectly honest. I really didn’t.”

But eventually, Spence and her brother “understood that she had no other choice”.

Bell explains how those conversations were difficult for both parties:

Bell said she never wavered after her decision, but came up with the idea of recording a video to lobby for change. She paid for the recording of the video and bequeathed it to Dying With Dignity Canada via Townsend.

“Leila was extraordinary: independent, stubborn, persistent, an activist,” said Townsend. “But a good death should be available to each ordinary one of us. One shouldn’t have to be extraordinary or lucky to have a good death.”

Bell organized a party with her friends four days before she died and a quiet family dinner the night before. She died on 28 August 2019, surrounded by her daughter and her daughter’s partner, Townsend and her partner, and her grandchildren and their spouses.

Before she died, Bell thanked everyone in the room for surrounding her with love, “like a warm blanket”.

Then, she smiled and winked, and died a few minutes later.

Read more: www.theguardian.com

LEAVE A REPLY

Please enter your comment!
Please enter your name here