On June 17, 2016, medical assistance in dying (MAID) became a legal option in Canada for the first time. This milestone was realized more than 20 years after Sue Rodrigues, a B.C. woman living with ALS, challenged Canada’s Criminal Code prohibition on assisted suicide under the Canadian Charter of Rights and Freedoms.
Since that time, individuals and organizations such as Dying with Dignity Canada have carried the banner, supporting the right of the incurably ill to receive medical assistance that hastens death.
The criteria by which MAID can legally be carried out, though, is highly regulated. The option is only available to mentally competent adult Canadians who make the choice from an unpressured state.
In order to qualify, they must suffer from a grievous and irremediable medical condition which causes them unbearable physical or mental suffering that cannot be relieved under terms they deem acceptable.
Currently, under Canadian law, mental illness does not qualify as a reason for MAID.
Strict safeguards have been put in place for those seeking MAID. First, the applicant must have two independent medical assessments proving their eligibility. At that point, they can submit a written request for MAID that must be signed by an independent witness.
Once approved, the applicant is welcome to withdraw their request at any time. They will need to indicate final consent immediately prior to undergoing the treatment.
Under Canadian law, MAID can be administered by a physician or nurse practitioner orally or with an injection. Alternatively, the patient can self-administer if a prescription is granted.
Without question, the legalization of MAID has been and continues to be a deeply sensitive and controversial topic.
In this article, The Citizen does not seek to investigate the ethical arguments for or against MAID. The goal is to share the stories of those who have in some way been touched by MAID, or those who at some stage in their own lives wish to have such options available to them.
MAID as an Advance Medical Directive
Since MAID received royal assent in 2016, one major amendment to the criteria has taken place. Originally, to be eligible for MAID, one had to be assured by a medical professional that they were facing a reasonably foreseeable death.
As of 2021, the condition no longer needs to be fatal or terminal. Still, there are some who believe this legislation needs further amendment in order to set the stage for true autonomy in a person’s right to die with dignity.
Debbie Colley of Niverville is hopeful that, in the coming years, MAID can become an option on a person’s healthcare directive.
Based on Manitoba law, every adult has the right to accept or refuse medical treatment at any time. By completing a form called a healthcare directive, a person’s wishes about treatments and interventions can be expressed should they be unable to communicate it for themselves.
The healthcare directive also allows for a proxy to be named. This is a person who has the power to make medical decisions on another’s behalf.
At 73, Colley is already facing certain health challenges that make her future feel worrisome. She lived an incredibly active life, participating in every sport possible, and now doctors tell her this might be the very reason things are breaking down.
A few years back, Colley underwent hip surgery. Since that time, she’s suffered chronic lower back pain. Neurologists tell her there’s nerve damage in her lower spine requiring a fusion surgery. Unfortunately, she’s on a wait list queue that never seems to come around to her turn.
“Here I am, years later, still waiting on surgery,” Colley says. “Because they didn’t deal with this problem in the beginning, it’s getting worse and worse. These doctors are waiting until the ambulance brings me in as opposed to fixing the problem before that. And if they can do that, I should have a choice too.”
The choice Colley refers to is the choice to apply for MAID long before her mental faculties give way or depression sets in.
The longer her physical condition goes unaddressed, the more her symptoms spread. She now experiences shooting pain in her upper back and shoulders. Migraines have also become common.
“And this is the other thing,” Colley says. “When you’re dealing with chronic pain and the inability to function, it impacts your mental health.”
Colley is all too familiar with the harsh realities of aging. She was there for both her mother and father as they progressed through the physical and mental challenges of getting old.
She saw, all too often, seniors living in personal care homes whose greatest wish was to die, yet their only option was to wait for their bodies to finally give out.
“Hundreds of years ago, if something happened to you and it wasn’t easily fixable, you died naturally,” Colley says. “And now we keep people alive indefinitely, but they’re not [necessarily] functioning better and they’re not happy.”
For more than 30 years, Colley worked as a psychiatric nurse. She recalls a patient who was once delivered to the psych ward at the hospital in which Colley worked. This older man had been panelled for the personal care home.
He ended up in the psych ward because he’d decided to quit eating. He was done with life and couldn’t bear the future he faced.
Colley and her colleagues were to try and convince him to eat. It was hard, Colley says, knowing that he was exercising the only means he had to expedite his own death, however harsh.
Another advantage to legalizing the MAID option on one’s healthcare directive, Colley says, is that people could direct their wishes to die in advance of developing Alzheimer’s or other forms of dementia.
No Hope for a Happy Life
Another Niverville resident feels confident that MAID is an option she’d like to exercise when her circumstances become too unbearable. Because of the stigma still surrounding this medical intervention, she’s asked for anonymity. We’ll refer to her as Sherry.
At just 42 years of age, Sherry has already spent most of her life dealing with the consequences of type 1 diabetes. However, she’s since been diagnosed with a rarer version, called brittle diabetes.
It’s gotten so bad that Sherry had to quit her job as a paralegal two years ago. She stays at home now, dealing with daily symptoms of shaking and weakness that make it difficult to stand or walk.
She also has gastroparesis, a condition of the stomach that causes nausea and vomiting all day long. More recently, she’s gained a new irreversible medical problem: a chiari malformation, where part of the brain extends into the spinal canal, causing headaches and balance issues.
“I’ve lost any desire to want to deal with this anymore,” Sherry says.
Occasionally, her symptoms get so bad that she must be hospitalized. The last time she went in, her situation was so dire that she had a seizure and fell into a coma.
Sherry has vivid memories from her comatose experience. It was the first time in years, she says, that she felt such peace and comfort. It’s the kind of sensation that she’s sure comes from a near-death experience. And she’s no longer afraid of dying.
Ironically, Sherry worked in estate planning during her career as a paralegal and she was also commissioned to proofread the legislation on MAID when it came into Canadian law.
In February of this year, Sherry decided to start the process of MAID for herself. She’s not ready yet, she says, but she wants all the red tape out of the way by the time she is.
When and if she decides to follow through, she looks forward to having a few close family members and friends at her side to share in the experience.
A Parent Who Chose MAID
Paul, a resident of New Bothwell, also agreed to share his experiences on the condition of anonymity. This March stands as the four-year anniversary of his dad’s passing by MAID.
For Paul, MAID was the right choice for his father, who had been diagnosed with a malignant brain tumour nine months earlier.
“The funny thing with Dad is that he knew he would choose MAID under certain conditions before he was ever diagnosed,” Paul says. “He never wanted to be a burden. He took care of others, not the other way around.”
Paul’s family knew that respecting their dad’s end-of-life wishes was to respect him. There were other areas, too, where his dad was specific about how he’d like to be memorialized when it was all over.
“I think it’s really important that people’s wishes, especially in terms of their quality of life, are honored,” Paul says. “It matters. That’s somebody’s legacy. It’s how you remember them.”
Many years prior, Paul’s grandfather experienced the ravages of cancer to his own body, so Paul’s not surprised that his father chose MAID. Paul’s mother supported him from the beginning.
His dad was very clear about how he wanted things to go.
“We talked well beforehand and he essentially said, ‘When I’m no longer myself, if I behave in ways that are not me, if I don’t know who you are, I want it to be over,’” Paul says.
Nine months later, Paul’s mom knew that the time had come. Even so, Paul’s dad was able to indicate his support of that decision with a clear thumb’s up. The whole family was either in the room or nearby when Paul’s dad said his final goodbye.
What impacted Paul was the professionalism and compassion demonstrated by the medical personnel towards their father.
“I’ve seen other people go slowly and it’s not [good],” says Paul. “I know now that I would make very similar choices to my dad’s.”
Paul, too, hopes that MAID will someday be an option on an advance healthcare directive.
“You could set it up in advance. That way, nobody feels like they have to make those difficult decisions for you,” Paul says. “And the family isn’t torn apart [over] what your decisions would have been.”
Neeltje de Jong’s story isn’t far from Paul’s. Her mother was diagnosed with a rare cancer called cholangiocarcinoma and passed away just weeks before this writing.
Upon her diagnosis, de Jong’s mother began to research her MAID options. But by the time she was ready to set the ball into motion, mental confusion was setting in and doctors were no longer willing to assume she was of sound enough mind to make the decision.
“So the lesson here is to apply for it even if you’re not sure you will go ahead with it,” de Jong says. “It would’ve been nice for my mother if she could’ve had it lined up for when she wanted it.”
De Jong’s mother was only 69 at the time of her passing. Because her heart and lungs were still strong, de Jong says that her body fought harder than usual in the final days and it was difficult to watch.
“We knew it wasn’t how she would have wanted to go, over three days like that,” de Jong says.
Caregiver in the MAID System
Julie served as a caregiver in a professional capacity to an adult dealing with severe physical disabilities. Due to these disabilities, Julie’s client needed round-the-clock assistance with the most basic needs.
“While hospitalized, they sought information about MAID as part of considering their options and own mortality,” Julie says. “I had the rare opportunity to witness that initial conversation, which was conducted with great care and compassion. The team provided detailed information without any pressure or discussion of end-of-life planning in that first meeting.”
Later, Julie says there were instances when her client went through bouts of deep anger or distress. During these times, they would occasionally make impulsive demands for MAID.
“Each time, those requests were declined, reinforcing that the process is not influenced by temporary emotions or external pressures,” says Julie. “Even in cases where a person requires extensive care beyond what the healthcare system can fully support, MAID did not allow for the services to be used reactively. I was relieved to see that there are safeguards in place that prioritize patient autonomy while ensuring decisions are made thoughtfully and without coercion.”
