Volunteer witnesses for assisted dying describe their little-known but essential role
Without the signatures of two independent witnesses, medical assistance in dying (MAID) cannot proceed
They have been called "stranger witnesses."
It's a fitting reference to volunteer independent witnesses for Medical Assistance in Dying: a modest and quiet army of volunteers, largely invisible.
They fan out across the country many times a day to hospitals, and hospices, nursing homes, and private living rooms, tasked with the responsibility of witnessing a legal document for a stranger in need.
Behind the title, they are a group of some 300 individuals, of all ages and backgrounds, united in a common cause: the belief that each of us has the right to determine when we are ready to die.
When Bill C-14, the Medical Assistance in Dying (MAID) law, was passed in Canada in 2016, it came with a series of safeguards. Among the list of legal requirements, the individual applying for MAID would be required to make a written request, and sign and date it in the presence of two independent witnesses, who must also sign and date the request.
There were strict definitions of who could act as a witness: individuals not involved in the applicant's care, who do not stand to benefit, financially or in any other way, from the person's death. This stipulation precluded many family members, as well as health-care professionals and caregivers connected to the patient.
Those restrictions would be loosened under Bill C-7, which passed its third reading in the House of Commons Thursday. The bill needs to be approved by the Senate before getting Royal Ascent. If passed, the revised law for MAID would allow paid professional, personal or health-care workers to witness, and reduce the number of required independent witnesses from two to one.
But when the original law passed in 2016 the witness requirement, intended as a protective measure, became yet another obstacle to assisted death. Many applicants struggled to find two such individuals. Some, ageing and isolated, had no one to turn to.
Dying With Dignity Canada (DWDC) stepped in to fill the void.
Dr. Ellen Wiebe is on the DWDC Clinicians Advisory Committee. The Vancouver-based physician is among Canada's pioneering MAID providers. She was the first to respond to the urgent calls for help, along with colleagues and a then-small community of MAID activists.
What began in British Columbia soon spread to other provinces across the country — and a volunteer witnessing program was born.
In Toronto, Franca Miraglia signed on. The retired communications professional was inspired, as so many are, by the story of a close relative.
"My cousin had ALS and he suffered for a number of years," Miraglia said. Because of the stigma, he kept his MAID request a tightly-guarded secret. "I thought that if I could play a small role in making it more acceptable as an option, that I wanted to make sure I did that."
I thought that if I could play a small role in making it more acceptable as an option, that I wanted to make sure I did that.- Franca Miraglia
Miraglia now witnesses weekly. Once she receives her assignment, she's given only a first name and an address.
She begins the witnessing with the easiest question on the form. She asks the person — often well into their 80s and 90s — to confirm that they are at least 18 years of age.
"That changes the dynamic in the room. So they see that we're not out to give them a test that they might fail. But we're all in this together," she said.
Together, but apart
Witnesses perform a legal function: they are only required to attest to the applicant's identity, watch them sign and date the MAID form, sign and date it themselves, and then leave. They play no role in the actual MAID procedure.
They also never know if the applicant goes through with MAID. That information is not shared.
Without the two witness signatures, however, an assisted death cannot proceed.
"Our curiosity has no place in this process," says Miraglia. "Our job is to get the legal requirement done ... to make it as smooth as possible and to not be intrusive."
56-year-old witness, Glen MacDonald, underscores the fine balance that witnesses navigate when they step into this role. In this very intimate setting, witnesses are expected to maintain a professional distance — not to advise, not to answer questions, and not to pry.
"It's just a question of staying focused on what you're trying to do and being helpful to the person, and not allowing yourself to get too emotionally invested," he said.
MacDonald's first witnessing was his most difficult. By the time he and his fellow witness arrived on the scene, the applicant's condition had already deteriorated.
The patient was lying in bed and in obvious pain, unable to communicate. The few words, spoken in a whisper, were slurred and incomprehensible. MacDonald wasn't sure the patient understood anything he or the other witness said.
They went back the following day, hoping the applicant would be more lucid, but they had to give up. "As witnesses, we couldn't do this. We just couldn't proceed in good conscience."
Such stories, however, are the rare exception. Most witnessings are straightforward and brief, lasting little more than 15 minutes.
Since that first time nearly three years ago, MacDonald has gone on to witness more than 200 times.
I feel compelled to do it, and if I were suffering, I hope that someone would step up to the plate and act as a witness to my request.- Glen MacDonald
"Why do I keep doing it? … Because I see it as a gift," he said. "I feel compelled to do it, and if I were suffering, I hope that someone would step up to the plate and act as a witness to my request."
In this small and growing society of volunteer witnesses and applicants awaiting MAID, gratitude is deep and plenty.
"I'm always so overwhelmed by how much every single patient stops and expresses so purely and clearly their gratitude," says Miraglia. "This is probably one of the last connections they're making with a stranger ... We're probably the last new person that they're going to be introduced to.
"And that desire to still make a connection with us, even for that very short period that we're in their space, is something that is very profound."
Witnessing moves online
Last March, under the weight of COVID-19, many hospitals and care facilities briefly pressed pause on all MAID procedures. By late April, Dying With Dignity Canada shifted most of their witnessing program to a virtual model.
Many volunteers say they prefer the intimacy of the face-to-face encounter. Some bemoan the challenges of a screen. Others, like Ellen Agger, believe online witnessing is a good option.
"We're not there to have a cup of tea. We're there to help give people the choice by fulfilling this legal requirement," said Agger, former co-chair of the Victoria chapter of Dying with Dignity Canada and one of the very first independent witnesses in B.C.
She said virtual witnessings simplify the process and remove some of the barriers and pressures that come with having strangers enter a person's home. "We can still be respectful and kind through a screen, as we get the task done," she said.
Which raises the question: should independent witnesses be required at all? Miraglia says no.
"The idea that you are sick and in a great deal of pain and then you have to find two independent people to witness to your ability to give consent, seems like a huge unnecessary hurdle," she said.
"And so it's a little strange because I'm actually volunteering to do something that in the broader scheme of things, I actually disagree with."
If Bill C-7 is passed, it will go some way towards achieving what Miraglia is hoping for, by reducing the number of witnesses required from two to one.
More importantly, the law will also loosen the criteria of who is eligible for an assisted death.
The deadline to pass the bill is Friday, Dec. 18.
About the producer
Alisa Siegel is a CBC Radio documentary maker. She has produced stories on subjects as varied as the underground railroad for refugees in Fort Erie, daring women artists in 1920s Montreal, the return of the trumpeter swan, Canadian nurses in World War I, and violence in elementary school classrooms. She lives in Toronto with her family.
This documentary was edited by Alison Cook.