A BC woman talks about her experience accessing “death care” more easily than health care at a time when federal policymakers are considering further expanding access to health care. medical assistance for dying (MAID).
The woman with chronic illness is about 30 years old and lives in Lower Mainland, but given the sensitivity of the subject she has asked us to refer to her by the pseudonym “Kat”. He has applied to Fraser Health and has been granted a MID application, even though he wants to live.
“I thought,‘ My God, I feel like I’m falling into the cracks, so if I can’t access health care, will I be able to access death care? And that’s what led me to look for MAID and I showed up last year, ”Kat said in an exclusive interview with CTV News.
He explained that while he hoped to have access to palliative care or other supports in the process, his “suffering was validated to the point of being approved for MAID, but no additional recourse has been opened.”
A decade ago, he was diagnosed with Ehlers-Danlos Syndrome (SED), a genetic disorder in which the body does not produce enough collagen, essentially the glue that binds connective tissues, skin, and our internal organs. sometimes causing complications and always causing significant pain.
As a result, Kat has been taking opioids for years and says this has interfered with finding a replacement for her family doctor, who moved years ago. A few years ago she saw professional nurses as well as a revolving door of rheumatologists, neurologists, psychiatrists and other specialist doctors, none of whom are experts in EDS.
“Our healthcare system is set up in a way that really bounces the patient to treat symptom after symptom and doesn’t really treat the underlying collagen problem,” he said. “Also from a disability and economic perspective, I can’t afford the resources that will help improve my quality of life. Because it’s financially and geographically closed, it’s much easier to let go than to keep fighting. “
Fraser Health’s MAID documentation includes a summary stating that “the patient has an extensive medical history” and that “there were no other treatment recommendations or interventions that were appropriate to the patient’s needs or financial constraints.”
A NATIONAL CONVERSATION IN PROGRESS
Kat’s disability and poverty are two of the key concerns raised by advocates who warn that Canada is moving too broadly and too quickly to expand access to MAID.
Initially, applicants required a terminal illness in addition to suffering physically, but now physical suffering is the only requirement. Lawmakers are hearing arguments from various groups about the next phase of the MAID program, which would allow those with mental illness to apply for medically assisted death.
Two BC families have called for more scrutiny of the process and recognition of unjust deaths to protect the most vulnerable.
“It is imperative that these safeguards ensure that vulnerable people receive care as a first choice, not as a death,” said Alicia Duncan, whose mother’s MAID death in Abbotsford is now the subject of an infrequent police investigation.
STILL HOPE MALTA APPROVAL
Kat now suffers from organ failure as a result of EDS complications and weighs only £ 89. Her body is closing and she admits that she is unlikely to have a long life ahead of her, but she still has hope: that someone will approve her request for palliative care, which health officials will see as desperate. is for fully funded advice. support or access to an EDS expert, even if they are outside of Canada.
“If I could fall into an alternative universe and have early intervention and proper treatment, for example 10 years ago, I don’t think we would be here talking today,” he said, noting the lack of EDS expertise in BC.
Fraser Health documents confirm that Kat has what she calls an “open invitation” to schedule her death at any time, but is focused on enjoying the coming summer months.
“It’s an interesting juxtaposition to feel so much more in life, as I’m leaning to the death and planning both things,” he said, moving his sore joints on a sunny concrete bench flanked by vegetation. “This has created a catalyst for a wish list, which I’m slowly leaning towards because I want to complete as much as possible while I have the strength, articulation and clarity I do now.”