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abruptly, at a routine appointment, my gp of 25 years announces she’ll no longer prescribe me fentanyl. yes, she’d done it for more than a decade on the advice of my pain specialists. but now it’s me or the college of physicians and surgeons nova scotia, which licenses her and has called out “ weak ” doctors for “over-prescribing” narcotics.
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but many large-sample studies (including a 2016 review of 39,140 ontarians) show that less than one half of one percent of medical users become addicted. opiate prescriptions also fell 32 percent between 2009 and 2015, even as “opioid-related harms” keep climbing. read the fine print on the latest national statistics — 4,000 “apparent opioid-related deaths” in 2017 alone — and you’ll find that the great majority involve other substances , illicit drugs like heroin and street fentanyl.
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people in intractable pain, who report worse quality of life than patients with other chronic conditions, also carry double the average suicide risk. they trade suicide plans in pain clinic waiting rooms. i have one, and i’ll use it if i have to.
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between appointments comes “an awful leisure,” as emily dickinson called what we go through after a loss. my husband, whose first language is not communication, looks paler and grimmer every day. he doesn’t say much to me, but in an interview about how the new guideline is affecting us he says he feels “helpless … like we’re living on death row.” listening to him, i’m breathless: i’ve been counting on him to save me.
with our doctors abandoning us, each new prescription feels like a reprieve. the keynote at the last meeting of canada’s pain specialists was the american anesthetist jane ballantyne , who recommends that, instead of drugs, even patients with severe pain should use “coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.” what can that mean? how do you reduce “suffering” without reducing “pain intensity”? (and why honour a figure known to patients as “no pain jane”? the conference organizers didn’t answer my requests for comment.)
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i feel your pain , one old boyfriend writes to me. (he really does say that.) another, as kind as i remember him all these years later, is horrified. he says what everyone says when i tell them what’s happening: it’s unimaginable. he also asks how he can help. he knows lawyers.
but for months i’ve canvassed scores of lawyers for one who’ll challenge the guideline and provincial medical colleges for malpractice and human rights infringement. the guideline contradicts health canada approvals for opiates for moderate to severe pain and violates our human rights protections under sections seven, eight, and 12 of the charter. it also runs counter to the 1961 single convention on narcotic drugs signed by the un and who and a resolution from the world medical association that “governments must ensure the adequate availability of controlled medicines, including opioids, for the relief of pain and suffering.”
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why am i fighting this fight in the first place? treatment guidelines are developed by specialists who manage the conditions involved. so why wasn’t a single pain specialist allowed to vote on a guideline that now threatens me? and why have our medical colleges mandated so-called “recommendations” that cause so much pain? even the guideline’s chief editor has called the awful fallout an “ over-correction .”
i’m hardly in the door before my doctor sits me down. the clinic will close at year-end. the college demanded he complete countless dawn -to-midnight chart reviews that have exhausted him into retiring. by now he’s looking down, his face grey. “we won’t let you go without a…” he says. “we won’t….”
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the very day i lose him, a young american friend with ehlers-danlos — a connective tissue disorder that can dislocate joints and break bones — loses his doctor, too. at 20, he’s planning suicide. i track down help for him in kansas before i email every pain doctor and patient advocate i know in canada, for me. only “sorrys” come back, the very first from a pain specialist, a friend, i counted on.
i also get pained replies from friends who thought they knew the doctors in their lives: but everyone has changed . we’ve stepped into a parallel universe, a wintry galaxy whose suns have set.
while we work out details, i read a scientific american story on the misinformation around overdose deaths. i email the author, a psychology professor at columbia university, to thank him, briefly mentioning my situation, including my own suicide plan.
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i don’t know whether you’ve ever been asked this , she emails.
my heart goes out to you , i write. i stare some more, then tell her what she wants to know. i go downstairs, wondering how i made it to this birthday and whether it will be my last, since my life now depends — as it really always did — on another doctor and a prescription pad. i can’t know now that the coming months will be quiet and calm for me compared to this one .