Published:June 7, 2022
A B.C. woman is speaking out about her experience accessing “death care” with more ease than health care at a time when federal policymakers are considering further expanding access to medical assistance in dying (MAID).
The chronically ill woman is in her late 30s and lives in the Lower Mainland, but given the sensitivity of the subject matter has asked us to refer to her by the pseudonym of “Kat.” She has applied to Fraser Health and been granted a request for MAID – even though she wants to live.
“I thought, ‘Goodness, I feel like I’m falling through the cracks so if I’m not able to access health care am I then able to access death care?’ And that’s what led me to look into MAID and I applied last year,” Kat said in an exclusive interview with CTV News.
She explained that while she’d hoped to get access to palliative care or other supports in the process, her “suffering was validated to the extent of being approved for MAID, but no additional resource has opened up.”
A decade ago she received a diagnosis of Ehlers-Danlos Syndrome (EDS), a genetic disorder where the body doesn’t produce enough collagen, essentially the glue that holds together connective tissues, skin and our internal organs, sometimes leading to complications and always resulting in significant pain.
As a result, Kat has been on opioids for years and says that’s interfered with finding a replacement for her family doctor, who moved away years ago. She’s been seeing nurse practitioners for several years, as well as a revolving door of rheumatologists, neurologists, psychiatrists and other specialist doctors, none of whom are experts in EDS.
“Our health-care system is set up so it’s really bouncing the patient around treating symptom after symptom and not really addressing the underlying collagen issue,” she said. “From a disability and financial perspective as well, I can’t afford the resources that would help improve my quality of life. Because of being locked in financially as well and geographically, it is far easier to let go than keep fighting.”
Fraser Health’s MAID documentation includes a summary noting that the “patient has an extensive medical chart” and that “there were no other treatment recommendations or interventions that were suitable to the patient’s needs or to her financial constraints.”
A NATIONAL CONVERSATION UNDERWAY
Kat’s disability and poverty are two of the key concerns raised by advocates warning Canada is moving too broadly and too quickly in expanding access to MAID.
Initially, applicants required a terminal illness in addition to suffering physically, but now physical suffering is the only requirement. Legislators are now hearing arguments from various groups about the next phase of the MAID program, which would allow those suffering mentally to apply for medically assisted death.
Two B.C. families have pleaded for more scrutiny of the process and acknowledgement of wrongful deaths to protect those who are most vulnerable.
“It is imperative that these safeguards ensure vulnerable people are provided care as a first option, not death,” said Alicia Duncan, whose mother’s MAID death in Abbotsford is now the subject of a rare police investigation.
STILL HOPEFUL DESPITE APPROVAL
Kat is now experiencing organ failure as a result of EDS complications and weighs just 89 pounds. Her body is shutting down and she acknowledges she is unlikely to have a long life ahead of her, but she is still hopeful: that someone will approve her request for palliative care, that health officials will see how desperate she is for fully-funded counselling supports or access to an EDS expert, even if they’re outside Canada.
“If I could slip into an alternate universe and have early intervention and appropriate treatment, say 10 years ago, I don’t think we would be here talking today,” she said, noting the absence of EDS expertise in B.C.
Fraser Health documents confirm Kat has what she calls an “open invitation” to schedule her death at any time, but she’s focused on enjoying the summer months ahead.
“It’s an interesting juxtaposition of feeling so much more into life as I’m leaning into death and planning for both,” she said, shifting her aching joints on a concrete park bench awash in sunshine and flanked by greenery. “That has created a catalyst for a bucket-list, which I’m slowly leaning to because I want to complete as much as possible while I have the strength and articulation and clarity that I do now.”