In his home in Lumby, British Columbia, Gary Hertgers keeps a framed photo from 2000 of his twin sisters, Wilma and Jenn Hertgers. Wilma had a medically assisted death this past January; Jen died of cancer in 2008. Aaron Hemens/The Globe and Mail
Gary Hertgers learns that his sister Wilma has had an assisted death when her apartment manager calls to say that her body has been taken to the street.
“You mean my sister is dead?” he asked.
“I thought you knew,” said the manager. “She told me the family knew.”
But none of her immediate family actually knew that Ms. Hertgers had been approved for medical assistance in dying, let alone set a date. Not her 88-year-old mother, whom she called twice a day. Not her older brother, who lived a town over. And not Mr. Hertgers, 61, who just this Friday, after the four-hour drive to Chilliwack, BC, shared a cup of tea at Wilma’s kitchen table.
They chatted as usual, mostly about Mrs. Hertger’s health; at 63, she is in chronic pain and struggles with depression. She told him the location of her will. But she had done this before, so the clue didn’t register. They parted with a hug. See you soon, he said.
Two days later, in the same apartment, someone reads a prayer next to her as she dies. At least that’s what Mr. Hertgers was later told by the doctor who administered the fatal drug. The identity of this man is still a mystery, like many of the details of his sister’s death.
When Canadians receive MAID, families and caregivers are often with them, providing comfort along the way. But the situation becomes much more tense, ethically and emotionally, when patients do not want relatives and friends to be involved.
Under the law, an individual’s right to privacy limits the medical information that can be shared with a third party. Even primary caregivers can be left out of MAID evaluations and only find out towards the end that a loved one has even applied. When they start looking for closure after the fact—to make sure no mistake happens, to know their loved one died peacefully—the system can reject them. This is devastating for families, creating aftershocks of complicated grief, as Mr. Hertgers can attest.
It’s also a problem for a system that promises to be rigorous and transparent. How can doctors and nurse practitioners make fully informed decisions in complex cases without gathering information from the people who know the patient as a person?
If death is truly a last resort after all options have been explored, experts say, then exclusion from the patient’s social circle should be the exception.
“You feel like you’ve been taken for granted, like the relationship you’ve built all these years has been replaced by someone who’s known her for a few months, that your care has been for nothing,” Mr. Hertgers says. “At the end of the day, did all that time and effort mean anything?”
Wilma Hertgers died without her brother knowing that she had decided to get MAID. Aaron Hemens/The Globe and Mail
Some experts say the role of families needs to be clarified before MAID can cover patients with mental illness. In December, in response to concerns raised by doctors and health organisations, the federal government announced it would ask Parliament to delay the extension of MAID to allow more time to establish clear safeguards. The Toronto Center for Addiction and Mental Health, the country’s largest psychiatric hospital, suggested this should include more counseling with patients and their families.
Current law allows competent adults to receive assisted death if they have an irremediable physical condition causing intolerable suffering that cannot be alleviated by care acceptable to the patient. Their deaths need not be “reasonably foreseeable.” They may have a history of mental illness, but only qualify for their physical condition.
Cases that do not involve terminal illness are already more controversial than those in which the patient faces imminent or foreseeable death. But expanding eligibility for MAID, international research suggests, will result in younger patients potentially eligible for assisted dying. Doctors may also disagree about their chances of recovery, especially in cases of mental illness. The maid’s decisions are now emotionally complex. But it’s one thing to hold the hand of an elderly parent with terminal cancer who wants a better death. And quite another to say goodbye to a thirty-year-old daughter with depression who may have decades left to live.
In Ontario, for example, a father learned this fall that his adult daughter was being evaluated for MFA when she forwarded an email from a doctor in British Columbia who suggested she travel west to complete the process. By then, a plane ticket was already booked for November. Her parents, who had cared for her since she was diagnosed with schizophrenia as a young woman, were distraught.
The father, whom The Globe and Mail is not identifying to protect his daughter’s privacy and his relationship with her, says he watched for many months as MADE consumed his daughter’s day; she delved into online how-to information.
His daughter’s life is not easy, he admitted in an interview. Her mental illness causes terrifying fits of rage, she spends most of her time alone and is plagued by delusions that she is rotting from the inside with a deadly physical illness.
But he certainly didn’t think she would qualify for assisted dying. Although she had some physical health issues, he couldn’t imagine they were serious enough to qualify for MAID. He has also seen longer periods of stability now that his daughter is closely monitored by a clinical team in the community. Although he is not privy to the details of her care, beyond what she willingly shares, there is no indication that her doctors have deemed the treatment futile.
So it was unattainable, he says, for a doctor to advise his daughter, who suffers from psychosis, to travel halfway across the country alone. Or that two MAYD assessors might approve her without insisting on input from her treating psychiatrist or family doctor. Still, the email suggested an expeditious result: If she could get to British Columbia — where an apparent physical ailment might make her eligible — she could qualify within weeks.
The father did not know what illness his daughter was dealing with and was not privy to any discussions with the MAID clinician. But in the end, the parents managed to convince their daughter to cancel the plane ticket. A reprieve, the father says – for now. Their daughter insists she will be approved at some point. Her father fears that one day they will find an empty room and a goodbye note and only learn that she had an assisted death when they have to bury her.
In the final decision, Canada’s MAID Act leans heavily toward patient autonomy. What counts as intolerable suffering is a subjective condition that is truly only understood by the sufferer – and even critics of the proposed extension say that treatment is a patient’s choice. But people are not just individuals; exist in relationships with others. These human connections are clearly a factor in MAID decisions: according to Health Canada, 35 percent of Canadians who received MAID in 2021 said they felt like a burden to family, friends and caregivers, among reasons, and 17 percent cited loneliness and isolation.
“It’s a meager view of autonomy,” said Christopher Lyon, who was given two days’ notice that his father was to receive an assisted death in July 2021. “It takes us out of context.”
Before his father died, Dr. Lyon, an environmental social scientist, says his family tried to share what he believed to be important context for MAID providers and evaluators. When his father was first evaluated for MAID, the family wrote a detailed history of his physical ailments and mental health issues, alcohol use, and personality quirks—and sent it to the MAID coordinator’s office. Dr. Lyon knew that his father experienced bouts of depression, especially around negative events. Hospitalized after a fall, he now faces a move to an assisted living apartment. He had been openly talking about suicide for months. However, the family expressed the view that with time, social support and mental health care, their father would improve.
Even today, Dr. Lyon is not sure who read it. He does not know the content of his father’s assessments, nor what information was collected. He says health authorities have refused to release the full records, believing it is not in the “best interests of the patient”. A late-stage psychiatrist’s report he has seen contains so many errors and omissions that he worries what else has been overlooked.
When the MAID provider called to give him 48 hours notice, it was the first time they had spoken. Until then, Dr. Lyon and his family have been trying for weeks to find a solution to save his 77-year-old father’s life. They thought they had time; his chronic health conditions had qualified him for MAID as a non-terminal patient, which required a 90-day waiting period, with a month to go. But his father stopped eating a few days after he moved, reluctantly, to the new apartment. He was admitted to hospital after another fall and fast tracked to receive an assisted death.
Dr. Lyon rushed to Victoria from Montreal, and on a sunny afternoon he gathered at his father’s hospital bed with his two siblings and mother. I remember the MAID provider was running late. “We were just watching the clock tick until someone came along and killed him, which is, you know, an excruciating, excruciating thing to experience.” Arriving, Dr. Lyon recalled, she said, “I heard there was a birthday someone’, as if joining a party; by a terrible accident the procedure…
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