Patients still fighting to die
Edmonton’s Patricia Craig endured an 18-month battle before her wish for a medically assisted death was granted.
Some people must fight incredibly hard to live. Patricia Craig ’s biggest fight was to die. Incapacitated from five chronic diseases and confined to bed, her only access to the world was a single gnarled finger with which she managed to operate an iPad. The former health administrator had no interest in living out her remaining time in a nursing home, dependent on others for feeding, help with bathroom needs and everything else. She felt there was only one choice left: to ask for medical assistance to end her life. That request was finally carried out Jan. 5 in her Jasper Avenue condo, but only after an 18-month battle that included three rejections and seven separate assessments by six doctors in two provinces. In an interview prior to her death, Craig spoke to Postmedia about the frustration she felt, and her desire to see the case serve as a lesson for Alberta to make its assessment system kinder for patients with complex diagnoses. “I can’t help them with their health, but if I can help just one person and make the process easier for them, then it’s worth it,” the 58-year-old said. “Because you have to have an iron will to go through this. And I honestly don’t think that should be necessary.” Close to 300 Albertans have been provided medical aid in dying since June 2016, when federal Bill C-14 granted access to incurably sick Canadians whose death was “reasonably foreseeable.” Alberta’s approach, centred around a Medical Aid In Dying (MAID) navigation team that guides patients and clinicians through the process, has been lauded around the country and even earned its architect Dr. Jim Silvius of Alberta Health Services (AHS) an award. By most accounts, the system has worked smoothly for the majority of applicants, particularly those with clear-cut diagnoses of fatal diseases such as cancer, advanced amyotrophic lateral sclerosis and multiple sclerosis. But for Craig, who had none of those illnesses, her case indicates the system is still a work in progress when it comes to those with complex or unusual conditions. AHS declined to comment on Craig’s case, citing patient privacy. Statistics show, though, that for every Albertan who has been approved for the service, one more has been denied for being unable to meet eligibility criteria. Many of those cases involved patients deemed to have failed the “reasonably foreseeable” test.
STRUGGLES START TO MOUNT
Craig lived a lifetime with health challenges. Her initial diagnosis was at age three when doctors found a neuromuscular disorder called Charcot Marie Tooth disease. The illness caused weakness in her extremities, and made it difficult throughout her life to perform certain physical tasks. Still, she managed to get by with a little help here and there, and maintained a challenging position with Alberta Health Services (AHS). That is, until about five years ago, when her health really started to deteriorate. First was a finding of chronic inflammatory demyelinating polyneuropathy, another neurological disorder that added to her motor impairment. ThencameconfirmationofType1 diabetes, which had been misdiagnosed for years. Osteoarthritis in her knees was the next diagnosis, followed by severe chronic depression. Five diseases, none imminently fatal on its own, but undeniably debilitating as a group. Not long after her 53rd birthday, Craig was using a walker full time. Eight months after that, she needed a wheelchair any time she left the condo. The struggle to get through the day soon became so great that the career-driven administrator was forced to take more than a year off work.
By late 2015, her whole world was a cramped bedroom high above Jasper Avenue, with just enough space for a bed, a few cabinets and a TV in the corner. Her 94-yearold mother provided all of her care, preparing her meals, helping her to eat, and changing her bedpans. Craig ’s body was failing, but her mind remained sharp; she started reading about the Supreme Court decision that called on Parliament to develop legislation to enable physician-assisted death. She began to contemplate the possibility of needing the service herself, and took comfort in the belief she would at least have the option available once Bill C-14 passed. “Then I found out to my horror that this ‘reasonably foreseeable’ clause had been inserted,” Craig said. “I was so angry. I stopped taking my insulin. I told everyone who would listen to me that if my death isn’t reasonably foreseeable now, I would make it reasonably foreseeable.” Yet refusing insulin didn’t have the desired effect. While it kept her in a constant state of high blood sugar, doctors determined it wasn’t enough to kill her. Though pessimistic about her chances, Craig nonetheless contacted AHS and applied for medical aid in dying. Two doctors were sent separately to assess her eligibility, and as expected, both immediately rejected her on the reasonably foreseeable test. (Under the federal law, two assessors must agree the patient is eligible). The result was devastating and left her feeling as though Alberta’s approach was focused more on the process than the patient, Craig said. Months went by as she considered her limited options, when a contact put her in touch with the B.C. Civil Liberties Association and its lawyer Jay Aubrey. British Columbia’s system differs from Alberta in that there is no central MAID navigation team. Instead, willing assessors make themselves known, and patients go to them individually. After hearing Craig ’s story, the civil liberties association decided to help her find out if she was eligible in B.C. This time, both assessors who reviewed her case approved her for a medically assisted death, and Craig started making plans to get to Vancouver in January to have the procedure.
TWO PROVINCES, TWO DIFFERENT SYSTEMS, TWO ENTIRELY DIFFERENT RESULTS
Getting from Edmonton to Vancouver, however, was not easy for Craig in her condition. The logistics became increasingly stressful and onerous. Completely incapable of leaving bed, travelling to Vancouver would have required special airline accommodations, transport vans, lifts and stretchers in both provinces. Craig said she would have done it if she had no other choice, but her family doctor encouraged her to reapply in Alberta to see if the obstacles could be avoided. Much to Craig’s surprise, the first assessor assigned by AHS agreed that her deteriorated condition made her eligible for MAID. But the second assessor disagreed. That meant Craig’s fate came down to the views of a third assessor, who would break the tie. When he arrived in late December, Craig recognized him as one of the doctors who rejected her during her first application in 2016. “He was different this time. He seemed more self confident,” she said. “I told him to remember the status quo wasn’t an option, that within months I would have to go to nursing home and I’d be separated from my mom. “That triggered something. You could almost see the light go on.” The next day, Craig got the call. The third assessor had approved her, and she would receive a medically assisted death at home after one last Christmas season with her mother. To advocates calling for reforms to Ottawa’s medically assisted death law, Craig ’s case is an example of how the “reasonably foreseeable” clause has become more of a harmful barrier than a useful safeguard. The legislation’s language is so excessively vague and confusing that it has led to widely varying practices from jurisdictions to jurisdiction and clinician to clinician, said Shanaaz Gokool, CEO of Dying with Dignity Canada. “When you have eligibility criteria that is so deliberately opaque … it’s created inconsistent, uneven and unjust access, so that depending on where you are in the country, you will get a different interpretation,” she said. Aubrey, the B.C. Civil Liberties Association lawyer who helped Craig with her application in that province, agreed that the reasonably foreseeable clause should go. She said Alberta’s approach to the legislation has led to a cautious and conservative system that may also be overly controlling or scripted. Patients such as Craig with complex conditions are likely better served by B.C.’s decentralized process that seems to give clinicians wider discretion, Aubrey said.
CAN REGIONAL DIFFERENCES EVER BE ERASED?
Silvius, AHS’s medical director for seniors’ health, offered a different take. While it’s a nice idea to think that every province might develop a similar approach, societal differences from coast to coast will likely always lead to some variations in how medical aid in dying is applied, he said. “If you look at the difference between B.C. and Alberta, I think you would recognize Alberta is very much more of a small-c conservative province,” Silvius said. “So I don’t see it as a system issue. At the end of the day, I think what we are seeing is more conservatism, perhaps, on the part of the assessors in this province.” As such, the only way to get everyone on the same page would be for Ottawa to redraft the law to be extremely explicit in its criteria, and all but remove the judgment of clinicians, he said. Silvius noted the assisted death legislation is still less than 20 months old, but even within that time Alberta has refined its approach. He said a court decision published last June in Ontario — involving a woman known only as AB — has changed the landscape. The judge in that case ruled that a “reasonably foreseeable” death doesn’t mean an applicant must be dying within a specific time frame from a specific lethal condition. Rather, the totality of their circumstances must be considered. That ruling has made a difference for clinicians in Alberta, many of whom previously based their assessments on whether a patient had a single fatal diagnosis, Silvius said. This may explain why Craig ’s last assessor reached a different conclusion than he did the first time he evaluated her case. “I think it’s fair to say (assisted death) has been greeted fairly cautiously by the medical community,” Silvius said. “But as it evolves — and it will evolve — we will see comfort develop with it that isn’t there at this stage.” For Craig, many of her final thoughts centred on hopes that her case could lead to change and spare others the same frustration. But if such change is slow or fails to materialize, patients need to know to keep fighting, she said. “I knew my way around the medical system and I am not scared by these people, but what about the folks who are intimidated by the white coat?” she said. “My advice is to align yourself with as much support as you can get. Ask questions and don’t accept the first ‘no’ you get.”