Lana Lewis and Russell Korus hold a photo of their late mother Annie Korus (Photography by Kevin Van Paassen)
Myths and misconceptions surround medical assistance in dying. This legal, highly regulated and compassionate procedure provides patients who are suffering from a life-limiting illness with a measure of control over how and when they will die.
When Annie Korus died last fall, quietly and painlessly over the course of a few minutes, her son held one of her hands, and her daughter the other. Family members filled the room, including grandchildren and her eldest great-grandchild. There were tears, but no regrets.
“We all had our opportunities to say goodbye, both individually and as a group,” says Annie’s son Russell Korus. In his last private moments, he told his 81-year-old mother how much he loved and respected her, and how he appreciated the lessons she had taught him.
Everyone was as prepared as possible when Annie closed her eyes on the afternoon of September 26, 2019, because it was a death that was requested by Annie and planned. Annie had medical assistance in dying (MAID) performed by a doctor at Sunnybrook, just as she had wanted.
Russell says his initial fears about MAID contrasted with how it brought a small degree of comfort to the family during a very difficult time. He says that for his family, knowing the when, where and how of Annie’s death was a great gift.
“It’s definitely better than getting a phone call in the middle of the night,” he says. As for his mother, Russell feels her death honoured how she lived. “It was merciful, and it was loving and caring.”
On her own terms
Only a few months before her passing, Annie had been living alone in the family’s long-time, two-storey home in Toronto, her husband having passed away a few years before. A former accountant, Annie still did taxes for everyone in the family and hosted weekly family potluck dinners. An opera season ticket holder for 30 years, Annie attended the opera regularly with Russell.
“She was always fiercely independent,” he says.
Last July, Annie was admitted to hospital as a result of medication issues, and subsequently developed an infection. She spent the next few months in and out of hospital and rehabilitation facilities. By September, she was at Sunnybrook with her heart and kidneys failing, unable to move anything but her arms, and in constant pain.
“This was a life she couldn’t abide by,” Russell says. “Can you Google ‘medically assisted suicide’?” she asked her son and her daughter, Lana Lewis.
At first, their mother’s words upset them deeply. They knew nothing about MAID, and the fact that it had been legalized in Canada in 2016 and involved a rigorous assessment process that required patient consent at every turn.
Through a process of discussion and supportive dialogue with doctors and support staff at Sunnybrook, Russell says he and Lana came to accept their mother’s wishes. “I realized it was the loving and caring thing to do,” he says. In the end, Annie’s family was grateful she was able to die on her own terms.
MAID is so new in Canada that most families, like Annie’s, know little about it. They may fear the stigma around the idea of assisted dying or they may worry a loved one will change their mind, but it will be too late.
“People are concerned that marginalized or vulnerable people will fall prey to this legislation,” says Dr. Amy Nolen, a palliative medicine physician at Sunnybrook. “We know that’s not true.” In fact, MAID rules require patients to meet extensive criteria. “Some might argue it’s too restrictive,” she notes.
“There’s no one-size-fits-all reason, though it often comes down to autonomy and independence.”
– Dr. Debbie Selby, palliative care doctor at Sunnybrook, on why patients choose MAID
The doctors at Sunnybrook who administer MAID are committed to meeting their patients’ needs with compassion and care. They’re also collecting evidence for research in order to help shake off the myths around this approach to dying.
“It’s so new,” says Dr. Debbie Selby, a palliative care doctor at Sunnybrook. “That’s why we’re doing the research, both to improve our local process for patients and families, and to learn more about MAID from the perspective of patients, families and health-care providers.”
An increase in requests
Between June 2016 and the end of 2018, 6,749 people received MAID in Canada, accounting for just 1.12 per cent of all deaths. “A very small percentage of people ask for MAID,” says Dr. Selby. Sally Bean, director of ethics and policy at Sunnybrook, notes that requests for the procedure have increased since legalization in Canada came into effect. “It’s about what we’d expect based on other jurisdictions,” she says. For instance, in the Netherlands, where it’s been officially legal since 2002, medical assistance in dying accounts for 3 to 4 per cent of deaths.
Sunnybrook has performed about 150 MAID procedures since legalization. Data collected at Sunnybrook in mid-2019 for a data-focused published study shows that between July 2016 and September 2018, the hospital had 107 requests for MAID, with 97 people found eligible and 80 of those eligible undergoing the process.
General data around MAID indicates the majority of people who request it have cancer, followed by those with neurodegenerative conditions such as amyotrophic lateral sclerosis (ALS). At Sunnybrook, 78 per cent of the patients who requested MAID had cancer.
Dr. Selby was the first to receive a request at Sunnybrook in 2016. Since that time, she has passed on her knowledge to Dr. Nolen, and the two of them are the primary doctors who administer MAID at Sunnybrook. MAID can happen in various units within the hospital, always within a private space.
“We also support our oncology and ALS outpatients who want to have MAID at home,” says Bean, who helps coordinate MAID at Sunnybrook. She liaises with the people who are involved with the patient receiving MAID, providing support and information to Sunnybrook staff and family members. Bean also ensures that care adheres to government rules and the expectations of the Office of the Chief Coroner for Ontario. These deaths do get reviewed thoroughly by the coroner, she says.
The process for MAID is new to many doctors in Canada, and most patients and their families don’t know the steps or what to expect. A 2019 quality assessment study conducted by Dr. Selby and Bean exploring the experiences of caregivers and families with MAID concluded that “families reported that a lack of clarity regarding the MAID process led to unnecessary complexity and anxiety.”
A thorough and rigorous process
MAID begins with a verbal inquiry or request from a patient. Once a patient is informed about MAID, it moves to the formal consent process.
Some doctors have no experience with MAID, or oppose it on conscience-based grounds. Healthcare professionals in Ontario can object to offering MAID, but must refer patients to someone who will provide it. Access to care has been a challenge, but now more professionals, including doctors, nurse practitioners and pharmacists, are gaining experience. “I think it’s getting better,” Dr. Nolen says.
Patients who find a physician to administer MAID must submit a request in writing. In Ontario, that can entail filling out a special form. This form includes a checklist that ensures the patient understands MAID, that they have a “grievous and irremediable condition,” and it must be signed by two witnesses who are independent from the patient (not family or part of their medical care team). The person administering MAID, and whoever is assisting them, also have their own corresponding legal forms.
According to the legislation set out by the Ontario Ministry of Health, a “grievous and irremediable condition” means that a patient has “a serious and incurable illness, disease or disability,” is in an “advanced state of irreversible decline in capabilities,” and has “enduring physical or psychological suffering, caused by the medical condition or the state of decline, that is intolerable to the person.” To receive MAID, a patient’s natural death must be “reasonably foreseeable.” Currently, MAID is not an option for someone who is in chronic pain or discomfort, but not at risk of death.
Prompted by a recent court ruling in Quebec during which the court invalidated the “reasonably foreseeable natural death” criteria, the eligibility requirements are currently under review by the federal government. Canada’s Department of Justice ran a public, online consultation around the eligibility criteria and safeguards for MAID in early 2020.
“It was merciful, and it was loving and caring.”
– Russell Korus says of his mother’s passing
‘Autonomy and independence’
Once a request for MAID has been formally submitted, the medical professional involved speaks to the patient to ensure they’re not being coerced, and that they understand MAID.
The issue of mental capacity is a critical part of the assessment process with MAID, Dr. Selby says. Doctors must determine whether a patient is capable of making their own health-care decisions.
Dr. Selby says she asks questions that include, “Why now?” and “What led you to know you wanted to die?” Patients often talk about losing their independence and not being able to perform basic tasks, such as eating or going to the bathroom without assistance.
There may be an assumption that people seeking MAID are driven to this choice in a desperate attempt to escape great pain, but Dr. Selby notes that pain is very rarely the motivating factor when patients choose MAID. Sunnybrook’s study showed that the majority of people who requested MAID did so over functional decline or the inability to participate in meaningful activities, followed by concerns over a loss of independence or loss of dignity. Physical suffering ranked much lower on the list.
“There’s no one-size-fits-all reason, though it often comes down to autonomy and independence,” she says.
Many patients don’t just ask for MAID, but want it passionately, Dr. Selby adds. They are often independent people who want to have a sense of control over their lives, like Annie Korus.
“Their end of life is not any different than anything else in their life,” Dr. Selby says. “Not only does it feel right, but [also] for some of them, it’s the only conceivable kind of death that makes sense to them. It’s a core part of who they are.”
Not everyone can conduct a verbal conversation. Many patients with ALS, for instance, communicate using technology or facial gestures, so Sunnybrook’s occupational therapists, speech language pathologists and other experts may help facilitate the conversation using assistive technology and speech and language therapy.
A substitute decision-maker, such as a family member with power of attorney, cannot consent on a patient’s behalf, Bean says. Consent on the day of request can only be provided by the patient themselves. And while some patients wish to put MAID in their advanced directive paperwork (also known as a living will), they cannot.
“That’s not currently legally permitted,” says Bean.
Period of reflection
Once the paperwork is done, there is a 10-day “period of reflection,” Dr. Nolen says. She notes that this requirement can present a challenge.
“If you need to have intolerable suffering to qualify, that means you need to live for 10 days with suffering that is intolerable,” she says. One family member reported to Bean and Dr. Selby in their study of families and caregivers that the period of reflection was “the longest two weeks of my life.”
Doctors can waive the 10-day period if someone is at risk of dying or losing their capacity to consent within that 10-day wait period. This happened to Annie: She filled out her paperwork for MAID on a Tuesday, but because she was losing her short-term memory and at imminent risk of losing capacity, the doctors moved up the procedure by one day.
“She was very relieved when she was told on the Thursday that it would be later that day,” recalls Russell.
When the agreed-upon day arrives, patients can delay the procedure, or change their mind entirely.
“The last thing I [am required to] say is, ‘Do you still want to go ahead? Do you understand that you will die today?’” says Dr. Selby. Consent is required so frequently that patients sometimes tire of it, she adds. On their final day, when she walks into the room, some will say to her, “Are you going to ask me again? Just get on with it.”
Perhaps unexpectedly, a difficult scenario can occur when patients become too sleepy or disoriented to consent. It can make the grief more potent for family members.
Dr. Selby recalls a circumstance where a man lost capacity before he could give his final consent to receive MAID while his two sons stood by helplessly.
“It destroyed these two boys to feel they had not honoured his wishes, and [they felt] that it was somehow their fault,” she says.
A unique experience
The standard method of administering MAID in Ontario is to give a patient a specific combination of drugs intravenously, says Dr. Selby, though patients can choose to take them orally. The first drug puts the patient to sleep, then the physician follows up with medications that cause the person to stop breathing and to stop their heart.
Although Dr. Selby tells families repeatedly that this process happens in just five minutes, they’re almost always surprised. “They can’t really conceive of how quick that feels until they’re in the moment,” she says.
People might also be surprised to know that in those rooms where patients take their last breaths, MAID offers something quite unique, Dr. Selby says.
Families and friends often hold parties with laughter and champagne. Favourite music plays.
Before one MAID procedure, one of Dr. Selby’s patients told a joke and then refused to give his pals the punchline. The man’s friends said it was so “him” to pull that kind of prank that they just had to laugh.
“Yes, these deaths are sad, but they are not sad in the way my patients who die regular deaths are,” Dr. Selby says. “[These patients] get to say their goodbyes; they say all those things that we talk about [when we say,] a ‘good death.’”