DEATH ON THEIR TERMS
It’s been a year since the federal government legalized medically assisted dying. Keith Gerein reports on how this monumental shift has been far less fraught in Alberta than some feared.
EDMONTON Martine Partridge chose to die on a Sunday.
The date had a certain symmetry, she felt, since she had been born on a Sunday nearly 40 years earlier.
Symmetry was meaningful to Partridge, who loved literature and poetry, classical music and yoga.
There was no such beauty or balance in cancer.
The disease had instead wrought its own capricious timetable, irrevocably depriving Partridge of her most basic pleasures.
The enjoyment of food. Walking her little dog Henry. Hugging loved ones without medical devices getting in the way.
Partridge was determined the disease would not take the one last freedom she possessed.
The ability to choose the manner of her final moments of life.
“Accessing medical assistance in death grants me this desire, this mercy. It allows me to pass over on my terms,” she wrote in a letter to family and friends, excerpts of which were shared at her memorial service.
“Disease is so damn unpredictable and as things progress, I am at least empowered by the notion that I get to say when and how my last breath will be taken.”
When the 39-year-old’s wishes were carried out on May 21, she was believed to have been the youngest Albertan to take advantage of federal legislation permitting health professionals to assist a patient’s death.
Partridge’s story is distinctive in that respect, but her choice is not.
As of June 4, nearly a year after the controversial federal Bill C-14 came into effect, a total of 150 Albertans have received medical assistance to end their lives.
That number — combined with relatively few complaints about the way the service has been delivered — has surprised observers who wondered how the province might respond to such a monumental shift in society’s conception of medicine.
Even Dr. Jim Silvius, the physician who led the development of Alberta’s strategy for medical aid in dying, has been astonished at how smoothly the change has been accepted.
“I had expected there to be a lot more acrimony at the beginning, to be honest,” said Silvius, Alberta Health Services’ medical director for seniors health.
“I’m pleased with Albertans’ responses to this. They certainly have their opinions but they seem to have taken it in stride.”
Silvius and other experts had expected Bill C-14 to trigger an initial surge of pent-up demand for the service that would eventually taper off.
In fact, the opposite has occurred. Requests in Alberta were relatively slow to begin and it wasn’t until the fall that demand started growing.
An average of four procedures are now being performed each week in the province, a rate that has held steady for several months.
“Having this (subject) out in the open means people are starting to think about it more and having some of those conversations that are healthy for people to have,” Silvius said.
“I think that’s why we are seeing the numbers persist.”
More than 70 per cent of the procedures have taken place in a health facility, another surprise to experts who expected more people would choose to die at home.
Silvius believes one of the best decisions AHS made early on was to set up a co-ordination service.
The initiative is centred on a team of four nurses, known as “navigators,” who handle requests for medical aid in dying, and guide patients through the process.
Referrals can be made by health workers or by patients themselves through email or the HealthLink phone service.
The navigators also help medical professionals unsure of how to proceed. This can include finding additional doctors willing to assess patient’s eligibility for medical aid in dying, and locating pharmacists who will supply the necessary drugs.
Physicians have handled the vast majority of the 150 procedures completed so far, though nurse practitioners have also been involved in some cases, Silvius said.
Alberta’s approach — particularly the co-ordination service model — has been considered enough of a success that other jurisdictions have started to copy it, while Silvius was recently feted with a Ca- nadian Medical Association award in medical ethics.
Still, despite the recognition, medical aid in dying remains contentious in the province on a number of fronts.
Some physicians expressed worry that a request from one of their patients will leave them in an impossible situation, caught between their own beliefs and professional duties. While the profession doesn’t force a physician to perform medical aid in dying, the requirement to pass on a patient’s request to AHS — and even continuing to care for that patient in the meantime — constitutes a form of complicity, they say.
Silvius acknowledged the health authority initially had some difficulties finding physicians willing to participate, but said the situation has since improved.
Surveys of doctors conducted earlier this year suggested a number of family physicians were willing to at least assist their own patients, but hadn’t stepped forward because they were unsure how to proceed.
“What we are starting to see is there has been some penetration into primary care,” Silvius said.
“It’s becoming something that some physicians are starting to think about within their own practices, and that’s a good thing because who knows the patient best but their own physician?”
Among the most outspoken critics of medical aid in dying has been Alberta’s Catholic bishops, including Archbishop of Edmonton Richard Smith.
In a letter to Postmedia, Smith said the anniversary of Bill C-14 provides an opportunity to “look critically at the fallout” on patients, health workers and society.
As an example, he said further investigation is needed to determine if a lack of access to palliative care and mental-health treatment might be influencing patients to seek a “hastened death.”
The stance of Catholic leaders has had a direct impact on the Alberta health system, since eight hospitals, several continuing-care centres and a large chunk of the province’s palliative care beds are operated by the Catholic-based health agency Covenant Health.
Covenant prohibits medical aid in dying in all of its facilities, requiring patients to be transferred elsewhere when the time comes. Over the past year, 20 such patients have been transferred out of faith-based facilities in Alberta, including those operated by Covenant.
The Catholic health agency issued a written statement defending its approach as a respectful balance between the wishes of patients and providers. The agency said that while most of its patients opt for palliative and hospice care, anyone asking for a medically assisted death is treated with compassion.
“We have not abandoned a person making a request nor the conscience rights of providers and institution alike. The Alberta model shows that balanced, reasonable solutions are always possible,” said the statement from Covenant vicepresidents Dr. Owen Heisler and Gordon Self.
Martine Partridge, in fact, spent her final days in a Covenant palliative-care unit before being transferred home to receive an assisted death.
The stance of Covenant and other faith-based agencies to refuse the service — and the government’s refusal to force the issue — remains a sore point for certain advocacy groups like Dying with Dignity Canada.
Such groups are also pushing for C-14 to be expanded to accommodate other types of patients who are currently excluded, such as mature minors.
In fact, AHS has formed three panels of clinicians to discuss if and how access should be increased in the future.
The research is essentially mirroring work already underway at the federal level, but Silvius said AHS wanted to make its own preparations in part because a court challenge or amendments to federal legislation could suddenly change the landscape.
Besides the issue of mature minors, the panels are focused on two other groups of patients: those with non-fatal physical and mental illnesses that are nonetheless debilitating, and people who have received a diagnosis of a neurodegenerative disease such as Alzheimer’s disease.
Some patients in that group want the ability to sign an “advance directive” that would allow them to receive an assisted death after the disease progresses to the point where they are no longer capable of giving consent.
In part, the panels are looking at models used in other parts of the world, such as a process in the Netherlands to accommodate people with dementia. The groups are due to deliver their findings in September, Silvius said.
To date, 66 Albertans have been refused a medically assisted death because they did not meet one or more criteria under the federal law.
On that last Sunday morning of her life, the Partridge was taken from her palliative-care bed to her apartment. A doctor from the Cross Cancer Institute arrived with a nurse, and the final drugs were added to her IV.
Within minutes, in front of a sunny view of Edmonton’s river valley, surrounded by her husband and parents, Partridge drifted into unconsciousness and died.
“People say I’m brave; I don’t see this choice as brave. I see this choice as honouring what is true and right in my core,” she wrote in her letter.
“My passing will be peaceful and humane. I couldn’t ask for more as I head up around the bend.”