Dr. Saba says he sees a grievous danger already arising as maids services becomes not merely acceptable, but also a solution for resource-strapped health care systems. He attends meetings, he says, where “cold management” of patient cases is discussed between doctors, nurses and hospital administrators. What’s meant is rationalizing the public health care dollars spent on patient care.
“It’s used all the time. They say, ‘We only have so much money, we have to set a limit, enough is enough, we don’t do the investigation to find the treatment necessary for the patient.’ That’s already there. I’ve been in a meeting where that’s been brought up in a very strong way. Physicians who have crossed the line that benefitted the patient but used too many resources have been told their privileges will be withdrawn.”
Saba’s concerns are hardly his alone. In late May, Quebec’s Collège des Médicins, which worked supportively with the provincial health ministry to adopt the province’s own assisted dying legislation ahead of the new federal law, sounded a startling warning note.
In a published letter to Health Minister Gaétan Barrette, Collège President Dr. Charles Bernard expressed serious concern that patients are “choosing” medical assistance in dying purely because their preference for palliative care isn’t available.
“End-of-life care cannot be limited simply to medical aid in dying,” Dr. Bernard wrote in French that was diplomatic-bureaucratic but left no doubt about his urgency. “That option makes no sense, from a medical point of view, unless it is part of a robust and complete system of palliative care in Quebec.”
Provincial foot-dragging on plans to expand palliative care services substantially is actually denying patients the very choice that was promised in the shift to maids services and making it increasingly problematic to discern which patients truly wanted to have a doctor deliberately end their life, Dr. Bernard warned.
“In certain identified cases, patients, for the lack of (palliative) care, might have had no choice but to ask for medical aid in dying to end their days ‘in dignity,’ which deeply concerns us,” the Collège president told the minister.
Worse, he added, the Collège has been hearing increasing concerns from its member doctors about re-direction of already scarce resources from palliative care to Medical Aid in Dying, which risks a violation of both the letter and the spirit of Quebec’s law governing end of life care.
For Dr. Paul Saba, those words are vindication for the argument he and many of his medical colleagues began making long before the federal or Quebec laws were on the books. Indeed, Saba says, the fears being expressed by the Collège were predicted by opponents of maids services that once allowed, it would change the very nature of medicine in Canada and Quebec.
“The whole health paradigm has been turned upside down,” Dr. Saba says. “We’ve turned medicine upside down. We’re no longer looking at treating, alleviating symptoms, at curing. We’re looking at ending people’s lives.”
Even as committed and vocal a proponent of maids services as Nova Scotia law Professor Jocelyn Downie recently acknowledged that Bill C-14 has “led to confusion” and been a source of “alarm” because of its unclear language.
A column Downie wrote jointly with University of Ottawa law Professor Jennifer Chandler, and which was published as an op-ed in the April 24 Halifax Chronicle Herald, said the Liberal government was warned before the legislation was passed that the term “reasonably foreseeable” death is medically meaningless.
The law professors note that Monica Branigan, chair of the Canadian Society of Palliative Care Physicians, told the House of Commons Standing Committee on Justice and Human Rights that: “‘Reasonably foreseeable’ does not have a medical meaning because it is reasonably foreseeable that we will all die.”
Last February, the “perplexing” and “unfamiliar” language in C-14 forced Nova Scotia’s College of Physicians to amend its own professional standard regarding medical assistance in dying to try to clarify what the federal law requires. The College adopted the finding of the Ontario Superior Court’s AB decision in declaring that “natural death need not be imminent, and what is reasonably foreseeable is a person-specific medical question…the physician need not opine about the specific length of time the person requesting medical assistance in dying has remaining in his or her lifetime.”
Downie and Chandler urge the provincial and territorial regulatory bodies for health care providers to follow Nova Scotia’s lead and adopt similar language which, they argue, will both clarify the federal law and extend it to cover circumstances where there’s significant doubt about MAiD’s legality.
“For example, when a paraplegic patient decides to refuse the skin care and changing of positions required to prevent bedsores and then antibiotics to treat the infections that will inevitably result…or when a patient with multiple sclerosis refuses food and liquids,” they write.
They also note that someone diagnosed with Huntington’s Disease could decide 20 years ahead that the prognosis for death makes it reasonably foreseeable.
“Obviously, they will not meet all the eligibility criteria for maids services on the day of diagnosis. For example, their decline in capability will not yet be advanced and their suffering not yet enduring and intolerable. But they will have an incurable condition and their natural death will have become reasonably foreseeable.”
For Alex Schadenberg, executive director of the Ontario-based Euthanasia Prevention Coalition, such clarifications are simply a way of saying in different words what Bill C-14 was intended to do all along. Schadenberg, who has been waging the fight against legalized medical death for almost 20 years, says the legislation’s confusions, ambiguities and uncertainties are features, not bugs.
“The law is designed to expand over time,” Schadenberg says. “I don’t like to say that because I wish it wasn’t true. But it’s exactly what’s happening. It uses language you can’t define, and that was intentional.”
As an example, Schadenberg points to an early version of the bill, which required a 15-day waiting period between a request for MAiD and its administration. Later, the waiting period was cut to 10 days.
“But then it says a doctor can waive the 10-day waiting period. So, in fact, there’s no waiting period. It says there must be physical or psychological suffering, but that’s limited to your death being reasonably foreseeable, right? That means you can’t have it for psychological suffering alone. Or does it mean that? Who knows?”
He points out that the Netherlands pushed the expansion of euthanasia to include psychiatric conditions, including the desire for suicide. If someone was deemed suicidal, they qualified for euthanasia because they were going to die anyway.
“That’s how it’s going to end up here because the law is designed to have no limits. It’s just a matter of time.”
Schadenberg is sharply critical of the media for failing to scrutinize the medically assisted dying narrative more stringently. He blames that failure, as much as the Harper government’s foot dragging or the Supreme Court’s deadline, for the panicked push to get C-14 through Parliament. He notes that in 2010, half of Canadians polled voiced concern that euthanasia would be abused.
Five years later, the Supreme Court ruled it had to be allowed. Eighteen months after that, in 2016, it was made the law of the land. Polls showed that by then a strong majority of Canadians welcomed it with few reservations. MAiD for children, for example, is off the table at least for now. The speed of change was no accident, Schadenberg says.
“‘Reasonably foreseeable’ does not have a medical meaning because it is reasonably foreseeable that we will all die.” – Monica Branigan
“There was all these stories of people who were suffering, and they were the reason we needed to get on with this euthanasia bill quickly. We were inundated, and you get to a tipping point where it just seems unreasonable to remain opposed. We were conditioned by group think to accept the concept of euthanasia. When (the Liberals) took action to legalize it, and then produced a bill with language like (C-14), why would there be any question of resistance?”
Though he continues to work for euthanasia prevention, and has begun developing his own documentaries to bypass the media and get the message out, Schadenberg struggles with pessimism about turning back the assisted dying tide. He thinks social pushback is possible yet sees ground being lost in an obvious source of resistance such as palliative care.
“The battle over palliative care is a serious battle because the other side has infiltrated it and there’s pressure being put on (palliative care) physicians to refer (patients for MAiD). If a palliative doctor says ‘I’m not participating in any way, shape or form, but they’re forced to refer, then palliative care is not a safe place either.”
In Langley, B.C., businessperson Tamara Jansen abruptly found herself in the fight of her life earlier this year precisely over keeping palliative care safe and MAiD free. Jansen’s family arranged last Christmas to work with a local hospice on a successful fund-raising event but were shocked to learn after the holidays that it would be providing medically assisted dying to patients. A phone call to let the hospice know future fundraising ventures wouldn’t be possible for a facility offering MAiD was met with a plea for help to stop it, she says.
“The lady I spoke with said, ‘You need to start calling the newspapers. You need to let people know we’re doing this because of a directive. It’s going to cost us donors. It’s going to cost us volunteers. Help us.’ I had assumed they were all for, but it was decided for them with absolutely no consultation. The directive was just sent out and bam, everybody was supposed to do it,” Jansen says.
The order in question came from the Fraser Health Authority following the provincial NDP government’s edict that any hospice receiving 50 per cent or more public funding had to allow MAiD. Within hours, Jansen had swung into political action. She met with neighbors and members of her church that night. She helped to organize a town hall meeting that attracted a standing room only crowd in a local school gym, and an equally successful one a few weeks later further up the Fraser Valley in Chilliwack. The growing opposition brought its strength in numbers to an information session organized by the health authority.
“They did it on a Friday at about 10 o’clock in the morning expecting about 10 people would show up. We just started letting everyone know: “Guys, come to this meeting. We need you.”
The result was another standing room only crowd: “They had to open the doors to a second room so they could fit more people in because otherwise everybody would have been standing in the hallway.”
But despite a heart-wrenching appeal from a woman with a terminal brain tumor who begged to be able to go to a MAiD-free hospice, Jansen left the meeting with the taste of political ashes in her mouth.
“When we walked out, I was upset. The (health authority) board listened very politely, and said, ‘Yes, we know this is a very complicated issue.’ We’d been played.”
It did not, however, stop Jansen from fighting. She began a letter writing campaign. Ultimately, she wound up with her picture on the front pages of newspapers as she stood outside the B.C. legislature in Victoria rallying participants in the March For Life to try to stop what she saw as an assault on palliative care. The intention was to make as much noise as possible to alert people to what was happening with palliative care, and why it was so wrong.
To begin with, she says, many medical staff working in hospices have no training in administering MAiD. Forcing them to provide medically assisted dying is “a botched euthanasia” waiting to happen, she says.
“You wouldn’t dare go for a facelift to someone who has no training as a plastic surgeon. You wouldn’t go to a dentist who knows nothing about dentistry. But you’re going to make people who have not been trained in killing to now suddenly kill someone? It truly is the Wild, Wild West.”
Even more compelling, Jansen says, is the need for Canadians to understand exactly what palliative care is so they can grasp why MAiD is so out of place in a hospice environment.
“When most people think about hospice palliative care, they think ‘oh, you go there to die.’ A lot of people were afraid, even before euthanasia to go to hospice because they didn’t want to die there. In actual fact, hospice care, when it’s well done, helps you to spend the last moments as lucid and as pain-free, with your family, with your loved ones, as best you possibly can. The point of palliative care is really to give you the best moments you can have at the end of your life.”
Jansen firmly believes that’s worth making community political noise over. But she’s also wary of an eerie silence that’s now coming from the Fraser Health Authority over the status of the MAiD directive.
“They’re basically keeping it on the down low as much as possible. I think they want people to start assuming it’s happening anyway, and just accept it. If the hospices think everybody is doing it, then they might feel they have no choice except to do it too. That’s why we have to keep making noise.”
For Sarnia-Lambton MP Marilyn Gladu, even a simple reassuring signal on palliative care from the Liberal government would be welcome. Gladu herself earned national applause last winter by getting an opposition private member’s bill through both the House of Commons and the Senate with unanimous approval. It was a rare feat, and seemed to bode well for the Liberal government’s acceptance of a commitment in the bill to produce a national Framework on Palliative Care by December of this year.
Since then, Gladu says, it has been crickets. A promised “national consultation” turned up as a call for submissions on a Health Canada website two days after Gladu asked a question in the House as to its whereabouts with the six-month deadline for undertaking it looming. An obligation under the legislation for the federal health minister to meet with her provincial counterparts to discuss the palliative care framework has yet to be met as far as Gladu knows.
“They might have met, and I might have missed it, but I’ve been paying close attention,” the southwestern Ontario Conservative MP says. “There hasn’t been anything made public as far as I’m aware.”
Even more disconcerting, she adds, was the lack of attention specifically to palliative care in the last federal budget. Health Canada points out that the Liberals promised $6 billion over 10 years for home care and palliative care in the 2017 budget, as well as an additional $184 million targeted to Indigenous home and palliative care. Well and good, Gladu says, but where’s the emphasis on palliative care by itself required by her Bill C-277?
“On a whim, they can come up with $4.5 billion to buy a 65-year-old pipeline so it’s obviously not a money shortage. It does give me pause that they’re not clear on how much they’ll spend on palliative care.”
Health Canada insists work is proceeding on schedule to develop the palliative care framework called for in Bill C-277. Gladu says she’ll continue pressing forward to make sure that happens, but meanwhile is deeply concerned by what she sees as missed opportunities to develop new approaches to palliative care.
For example, she says, Nova Scotia ran a successful pilot project to train paramedics to administer pain control medication during non-emergency hours. A request of $55 million was made to expand the training. Ottawa anted up $6 million.
Beyond the apparent lack of funding, which is how politicians signal what they consider significant, Gladu shares the deep concern of Tamara Jansen and others about B.C. mandating MAiD in palliative care. Additionally, she says, there’s the “trampling of conscience rights” in Ontario where doctors opposed to MAiD are now legally bound to refer patients to colleagues who will administer it. And then there are the cases such as Dr. Ellen Wiebe’s where it appears, to some at least, that the spirit if not the letter of Bill C-14 was broken but nothing was done.
“I think we’re at the point of normalizing illegal behavior because there’s no enforcement,” Gladu says. “I’m concerned because I’m seeing more and more of these examples. The system that’s been put in place must be respected. The rules have to be enforced.”
But what happens when the rules themselves are drafted with such “purposeful flexibility” that no one knows what they mean, and physicians like Dr. Wiebe realize they’re essentially on their own, with little help from the law, in deciding what it means to go too far?
B.C. MP Mark Warawa says if that’s a conundrum on the second anniversary of Bill C-14, it has the potential to create legislative paralysis when the legislation comes up for a mandatory review in three years.
“The law needs to be amended to provide greater clarity but what we have already are proper protocols, proper enforcement, being ignored. How do you amend and clarify what’s being ignored anyway? When the safeguards aren’t respected, and the enforcement doesn’t happen, when you can’t control what you already have, what can you do? As a legislator, I have no answer to that.”
What remains, perhaps, is the ancient reminder that speed kills, and the novel realization that MAiD kills absolutely.
We hope you have enjoyed this piece. We look forward to enlarging the conversation on important public issues with a long form series entitled Convivium Explorations throughout 2018.