The last time Ray Chwartkowski saw his sister, Cheryl Lowen, was two days before she died in December, 2019.
On that day, he was shocked to learn that her death was scheduled, as she had been approved for medical assistance in dying, often referred to as MAID.
“She never had a diagnosis for any terminal illness,” he said. “I consider her death a total tragedy.”
Chwartkowski, a digital content creator who lives in Vancouver, hasn’t seen Lowen’s official MAID application or assessment paperwork, but he believes his sister should not have been eligible for medical assistance to end her life.
He said Lowen, who was 50 when she died, had a difficult childhood and struggled with physical and mental health problems throughout her life. In mid-2019, she was diagnosed with median arcuate ligament syndrome, a chronic illness that causes severe abdominal pain.
Chwartkowski said he has compassion for her pain but is certain she didn’t meet MAID’s criteria of a reasonably foreseeable death. He also questions her ability to make a well-informed decision after receiving the difficult diagnosis.
“From what I understood, she was refusing to eat, she was refusing immediate medical attention,” said Chwartkowski, adding that she also refused surgery to treat her condition.
Chwartkowski believes his sister, confronted with a chronic medical condition after a life filled with difficulty and mental health struggles, simply gave up hope.
“It’s like she just had so much heartache,” he said. “It just doesn’t make sense. She had so much going for her.”
Chwartkowski said, to his knowledge, Lowen applied for MAID twice and was denied the first time.
Bill C7 would change MAID eligibility
The federal government is expected to make a decision by Dec. 18 on Bill C7, legislation that would change MAID’s eligibility criteria.
MAID has been legal in Canada since 2016. To be eligible, a person must have a serious illness or disability, must be in an irreversible, advanced state of decline and at a point where a natural death is foreseeable. But Health Canada’s MAID webpage also explains a terminal or fatal condition isn’t necessary to be eligible, and treatment options can be deemed unacceptable by the person experiencing suffering.
In September 2019, a Quebec court ruling found MAID’s foreseeable death criteria unconstitutional. The foreseeable death requirement was successfully challenged in Quebec Superior Court by Jean Truchon and Nicole Gladu, who had debilitating but non-terminal conditions.
Truchon, 51, told the court he experienced intense psychological suffering as his severe pain and complete paralysis, brought on by spastic cerebral palsy and several spinal cord conditions, meant he could no longer lead an independent, fulfilling life.
”I am aware that going before my parents do is not the best way, because it defies logic, but I can’t take it anymore … my family and my friends know this and they respect my decision, even if they do not accept losing me,” said Truchon.
Justice Christine Baudouin’s judgment states that expert testimony and data from Canada and other countries demonstrated MAID is a “strict and rigorous process,” and there is no indication of heightened risk to vulnerable people when end of life is not a criteria.
Baudouin ruled the reasonably foreseeable natural death requirement was “disproportionate” and infringed on Truchon and Gladu’s rights.
“The applicants have always fully lived their lives with a physical disability. What they are truly seeking is for the law to recognize equally the suffering, dignity, and ultimately, the autonomy of people like themselves who have grievous and irremediable conditions … regardless of whether or not death is imminent,” her judgment states.
Truchon ended his life through MAID in April.
In light of the Truchon ruling, the Canadian government began a review in January and collected 300,000 questionnaire responses from the Canadian public about MAID.
Bill C7, which removes the “foreseeable death” requirement, was proposed on Feb. 24. For people without a foreseeable death, the bill adds several conditions to the application process: It extends the 10-day reflection period to 90 days and requires the applicant be made aware of, and seriously consider, their treatment options. Applicants must also be offered consultations with experts who could provide treatment services and one of the two medical experts signing off on the application must have expertise in the applicant’s illness or disability.
If approved, Bill C7 would also explicitly exclude eligibility for people whose sole underlying condition is mental illness. That’s because the government believes that if the foreseeable death requirement is removed without adding conditions, it may be easier for those with a mental illness alone to receive MAID.
According to Health Canada’s first annual report on medical assistance in dying, 1,201 people in B.C. received medical assistance in dying in 2019: 64 per cent were cancer patients; 36 per cent were people with neurological, cardiovascular or respiratory conditions; and nearly 14 per cent of the total were also categorized as “other” — covering a range of conditions, including frailty — because health practitioners can list several underlying conditions in their report.
A brother left with questions
Gary Nichols has been advocating specific safeguards for people with mental illness, like his late brother, Alan Nichols, who ended his life with MAID in July 2019 at the age of 62.
Gary said Alan was a healthy child and an excellent hockey goalie until he was diagnosed with a brain tumour at the age of 12. After two brain surgeries, he suffered from hearing loss, loss of co-ordination, and the occasional seizure. He also suffered from severe depression, said Gary.
“After a while, he really started to withdraw from people. He’d go through cycles, wanting to die. But then, he would change his mind, find something good.”
Gary moved to Edmonton in 2011, where he works as an accountant, while Alan remained in their hometown of Chilliwack.
In 2019, when Alan was admitted to a Chilliwack hospital and his family was notified that he was scheduled to die by MAID, Gary said he was appalled. He received the news four days before his brother’s death.
He believes Alan should not have been approved under current legislation.
“He didn’t have a terminal illness, his natural death was not foreseen,” Gary said.
To apply for MAID, a person must make a written request and the application must be signed and dated by two independent witnesses. The applicant must then undergo medical assessments by two physicians or nurse practitioners to determine if they meet all MAID criteria, including the capacity to make a competent decision. Then there is a 10-day reflection period. At any point in the process, the applicant can change their mind.
Due to confidentiality laws, Gary Nichols has not seen Alan’s MAID paperwork or received answers from the Chilliwack hospital about why his application was approved.
Gary believes Alan’s family and his support system of neighbours should have been consulted before medical practitioners decided to approve him for MAID.
“Of course, we would have tried to stop it because we know that probably in a week or two he’s going to change his mind,” Gary said. “Overall, they don’t know how to handle mental illness. It’s quite obvious. There’s such a high percentage of suicide with mental illness.”
MAID and mental illness
When MAID legislation was passed in 2016, the federal government asked the Council of Canadian Academies to create expert panels to study the most ethically complex issues in the new law.
One panel discussed MAID for people whose only diagnosis was a mental disorder. According to the Council report, released in 2018, experts could not agree on some fundamental issues, such as reasonable foreseeability of death in a person with a mental illness. Some panel members felt it was incompatible to have the health-care system working to prevent suicide while also providing MAID to applicants with mental illness. There was also debate over whether suicide would increase among the mentally ill if MAID were not an option or whether suicide prevention strategies would be affected.
Sally Thorne, a registered nurse and professor at UBC’s School of Nursing, said MAID for those suffering from mental illness is controversial.
“In the despair of a depression, many people would be suicidal and yet with treatments they could be beyond that,” Thorne said. “Yet there are many people who would argue, having seen that situation, that withholding medical systems and dying is simply forcing those individuals to suicide. And, frankly, suicide is not a clean and neat option.”
Jessica Magonet, a staff lawyer for the B.C. Civil Liberties Association, said the organization believes MAID should be available to individuals whose sole condition is mental illness.
To exclude those who are mentally ill “could raise some pretty serious Charter concerns,” said Magonet. “People suffering from mental illness should not be excluded from MAID based on the type of condition they have … mental illness can cause real serious suffering.”
“That said, you have to have capacity to consent in order to qualify for MAID. So, if your mental illness is interfering with your capacity to consent, under no circumstances should MAID be administered to you. That’s why a doctor needs to be satisfied that you can make a lucid cogent decision about this.”
Support people with disabilities
As head of the Canadian Association of Community Living, Krista Carr promotes the rights of Canadians with physical and intellectual disabilities.
Carr said she receives calls from Canadians with physical and mental disabilities who say health providers have suggested MAID is now available to them.
Carr said advocates for MAID stress the importance of personal autonomy and the right to choose. However, people living in poverty and social isolation, and those without access to treatment, sometimes feel they don’t have a real choice, she said.
“They can’t get assistance in living, but they can get quick assistance in dying,” Carr said.
Health Canada’s 2019 MAID report states that of the 2,203 MAID recipients in Canada that year who required disability support — including rehabilitation services, income supplements, and assistive technologies or equipment — four per cent did not receive it. The report does not say whether that four per cent of people would have opted not to proceed with MAID if they had received disability support.
Natasha Fernandes, a psychiatry resident at the University of Toronto and a member of the board of directors for Canadian Physicians for Life, said she sees patients face long waiting times and experience difficulty getting treatment that might alleviate suffering.
She gives the recent example of an elderly patient who suffered a serious fall injury, had a history of depression, and “made an offhand remark about wanting euthanasia,” which prompted a consultation with a MAID team.
“It’s so unfortunate that this lady can so quickly access ways to end her life. However, if she were to ask for help, the wait time is just ridiculous, like six to 12 months to see a psychiatrist as an outpatient. The wait time to go to rehab is at least a month,” Fernandes said.
“Things come together so quickly when people want to end their life, and when they want help to survive, and to live a beautiful life, we kind of drag our feet.”
Open, robust conversation critical
Dr. Jonathan Reggler, a physician and board member for Dying with Dignity Canada, said he believes Bill C7 will result in better care for those who choose not to die.
Reggler, who is based in Courtenay, said people who come to him for information on MAID or for assessment also learn about care options available to them.
“Currently there is the requirement that there be a reasonably foreseeable natural death, so patients usually are quite close to death. But, nonetheless, what they are seeking is information very often.
“My happiest results of an assessment are when a patient comes to me believing that they wish to have a medically assisted death, they learn about all the options, and they choose something else,” he said.
He said patients should be helped to understand alternatives to MAID “every step of the way.”
He prefers assessments where family members are present because they provide a “clear view of the life that the patient has.”
“I spend more time on a MAID assessment than I spend on anything else I do in my work. They are very drawn out. And the reason for that is, what I do, ending a life, is enormous,” he said.
Reggler said he supports removing the foreseeable death requirement because, despite best efforts, the medical profession can’t relieve intolerable suffering for every patient.
Ultimately, Ray Chwartkowski and Gary Nichols want to see more support for people whose death is not foreseeable and for those who struggle with their mental health.
Chwartkowski believes Canadians “would be much further ahead” if the government invested in free counselling services or better medical care rather than expanding medical assistance in dying. He does not support removing foreseeable death as a requirement.
Nichols said the bill doesn’t go far enough to lay out safeguards.
Patricia Rodney, a registered nurse and associate professor for UBC’s school of nursing, has focused her research on end-of-life decision making and morality in health care.
Rodney said a “healthy, open and robust” conversation surrounding end-of-life care is very important.
“I certainly respect autonomy around this, but I do worry that it’s not really an autonomous choice if people haven’t got good options,” she said.
“We really need to ensure that we’ve got a robust health-care delivery system where people have options so that this doesn’t become a default.”
— With files by Lina Chung
Kristen Holliday is among the 2020 recipients of the Langara College Read-Mercer Journalism Fellowship. This feature was produced through the fellowship.
By the numbers
5,631: Assisted deaths (Canada) in 2019
7,336: Written requests for MAID (Canada) in 2019
1,280: Assisted deaths (B.C.) in 2019
1,603: Written requests for MAID (B.C.) in 2019
Source: First annual report on medical assistance in dying