A woman from BC speaks of her experience of accessing “death care” with greater ease than health care at a time when federal policymakers are considering expanding access to medical assistance at the end of the day (MAID).
The chronically ill woman is in her late thirties and lives on the Lower Mainland, but given the sensitivity of the subject, she has asked us to refer to her under the pseudonym ‘Kat’. She applied to Fraser Health and received a request for MAID – even though she wants to live.
“I thought, ‘Gosh, I feel like I’m falling through the cracks, so if I don’t have access to health care, will I have access to death care?’ And that’s what led me to investigate MAID and I signed up last year,” Kat said in an exclusive interview with CTV News.
She explained that while she hoped to access palliative care or other support in the process, her “suffering was validated to the extent that she was approved for MAID, but no additional resource has been released.”
Ten years ago, she was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic condition in which the body doesn’t make enough collagen, essentially the glue that holds connective tissue, skin, and our internal organs together, sometimes leading to complications and always causing problems. significant pain.
As a result, Kat has been taking opioids for years and says it has made it difficult to find a replacement for her GP, who moved years ago. She has been seeing nurse practitioners for several years, as well as a revolving door of rheumatologists, neurologists, psychiatrists, and other specialist physicians, none of whom are experts in EDS.
“Our health care system is set up in such a way that it really overwhelms the patient to treat symptom after symptom and not really address the underlying collagen problem,” she said. “Even from a disability and financial point of view, I cannot afford the resources that would help improve my quality of life. Because we are also stuck financially and geographically, it is much easier to let go than to keep fighting.”
Fraser Health’s MAID documentation includes a summary noting that the “patient has a comprehensive medical map” and that “there were no other treatment recommendations or interventions appropriate for the patient’s needs or her financial limitations.”
A NATIONAL CONVERSATION GETTING STARTED
Kat’s disability and poverty are two of the top concerns raised by lawyers warning that Canada is going too broad and too fast in expanding access to MAID.
Initially, applicants required a terminal illness in addition to physical suffering, but now physical suffering is the only requirement. Lawmakers are now hearing arguments from various groups about the next phase of the MAID program, which would allow mentally afflicted people to request medically assisted death.
Two families in BC have argued for greater process control and recognition of wrongful deaths to protect the most vulnerable.
“It is imperative that these safeguards ensure that vulnerable people receive care as a first option, not death,” said Alicia Duncan, whose mother’s MEID death in Abbotsford is now the subject of a rare police investigation.
STILL HOPEFUL DESPITE APPROVAL
Kat is now experiencing organ failure due to EDS complications and weighs just 89 pounds. Her body is shut down and she acknowledges she probably won’t have long life ahead of her, but she’s still hopeful: that someone will approve her request for palliative care, that health officials will see how desperate she is for fully funded counseling support or access to an EDS expert, even if located outside of Canada.
“If I could slip into an alternate universe and get early intervention and appropriate treatment, say 10 years ago, I don’t think we’d be talking here today,” she said, pointing to the absence of EDS expertise in BC
Fraser Health documents confirm that Kat has what she calls an “open invitation” to plan her death anytime, but she’s focused on enjoying the coming summer months.
“It’s an interesting combination of feeling so much more in life while leaning toward death and planning for both,” she said, shifting her aching joints on a concrete park bench full of sunshine and flanked by greenery. “That has created a catalyst for a bucket list, which I am slowly leaning towards as I want to complete as much as possible while having the power, articulation and clarity I have now.”