This article is a must-read for anyone suffering from chronic pain. My chronic pain began after I drank Radio Active Iodine, which I now know to be a poison, to supposedly treat my Graves disease. Last Friday I finally received a diagnosis and I was ecstatic. Sounds weird I know but to finally have a specialist give you a reason for the horrendous, debilitating pain is an enormous relief. However, I know all too well how scary it is to be told that you will no longer receive medication to help with pain relief. I, a 70-year-old woman who has not abused drugs in any way am painted with the same brush as someone who is addicted to and purchases street drugs without a valid prescription.
Inside Canada’s ‘other opioid epidemic’ — patients cut off from medical painkillers
Special to National Post
By Dawn Rae Downton
Illustrations by Mike Faille
My Year on Death Row:
It started in my feet, which ached constantly whether I wore flats, heels, trainers, or went barefoot. Physiotherapy and orthotics? Useless. Soon the ache climbed my legs, wrecking my knees and seizing up my hips, then my lower back. Eventually, I was diagnosed with sacroiliitis, an uncommon inflammatory arthritis that can follow trauma or infection, or, rarely, childbirth. Mine, cause unknown, made one orthopedist say my spine in an x-ray looked like a 90-year-old’s. I was 39.
Over the next few years, I made at least quarterly visits to a Halifax pain clinic. I tried acupuncture, meditation, mindfulness, massage, and yoga. I tried physical, occupational and cognitive behaviour therapy. I tried injections to block nerves and trigger points, IV lidocaine infusions, anti-inflammatories, anticonvulsants and antidepressants with names straight out of Tolkien — Elavil, Aventyl. I tried cannabis and even (God help me) group therapy.
My pain screamed back. I couldn’t sit, lie down, stand or walk.
“One must have a mind of winter,” said Wallace Stevens, as if he’d gone through this, and so I did. I was hopeless, bleak — until, with opiates the very last resort under pain management protocol, I was trialed on transdermal fentanyl. It worked almost overnight. I was back!
And then, 12 years later, just like that, I wasn’t.
January 23, 2017. 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.
“This is politics,” I say, snatching up my parka to leave.
“Only half politics,” she replies.
She dangles two Rxs in front of me to get me through the next couple of months — then says she’ll only give me the second one when I return to hear her out on the perils of opiates. I will have to sit through the sermon at the soup kitchen if I want my dinner. I don’t go.
About one million Canadians have by now had similar shocks. We’ve heard all we want to about the downsides of opioids, whatever they are. Unlike millions of other adults and children with chronic pain in this country (as many as 29 percents of us), we suffer so miserably and relentlessly that we rely on these drugs — oxycodone, hydromorphone, medical fentanyl — to lead remotely stable, productive lives.
At least we did until a new pain prescribing guideline came out last year. Developed by a team at McMaster University who pitched it to Health Canada, the avowed goal was to contain the opioid crisis — two decades of egregious over-prescribing that has turned patients into addicts and diverted deadly doses of narcotics to the street. Or so the story goes.
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.
We have a tragic drug crisis. But medical analgesics are not what’s driving the addict overdoses and deaths that sparked Ottawa’s no-narcotics policy. And that policy has created a second crisis: “a climate of fear around opioid prescribing,” as three doctors put it in a letter to the Canadian Medical Association Journal, that has scapegoated many patients and left them with untreated pain.
For you, too, catastrophe is just a car crash away. I know a woman whose life changed when she slipped on an ice cube and split her pelvis. It could have been any of us. You’d be nuts to toss an old opiate fill, maybe that one you didn’t finish after dental surgery. It’s not like you’re going to get more if you need it.
Perhaps it’s easier to crack down on doctors than it is to intercept illegal opiates, like the tiny but potent shipments of powdered fentanyl mailed in from China. Except now both addicts and patients have dealers on speed-dial, and stories proliferate of patients who’ve died trying to replace their medications on the street.
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.
Addiction researchers would say I’m depressed, or have a “substance use disorder.”
Pain is my disorder. Sacroiliitis is progressive. My back has had years to get worse.
February 20, 2017. It’s freezing. A wind tunnel grips the hospital; a gust of ice on the harbour knocks me off my feet. But I’m lucky, or so I think. When my GP cuts me off, I have my pain clinic to fall back on. My doctor, a longtime anesthetist, has always seen me quarterly. Today, he takes over my prescribing directly.
Still, it feels fraught. I hear about many GPs and pain specialists retiring early, quietly bailing in the adversarial atmosphere, while younger doctors are taught that medical opiates are useless poison. In the past four years, for want of practitioners, a dozen pain clinics in Nova Scotia have dwindled to four.
Those who do remain are being investigated if they write “too many” opioid prescriptions, or doses above recommended guidelines. As the pain specialist Mary Lynch describes the process in the Canadian Journal of Pain, doctors targeted for “educational” reviews are made to substantiate their patients’ treatment plans for months on end. Some doctors have lost their licenses, others their prescribing privileges. The rest, she writes, are duly intimidated.
An Ontario pain patient tells me his GP came back from “re-education utterly transformed into an anti-opioid zealot” who’d no longer prescribe for him — “not anything.”
I ask my doctor if he’s being investigated.
There’s his smile. All’s fine, he says.
But he’s no longer allowed to treat me unless I sign Canada’s new quid pro quo “pain contract,” known euphemistically as a treatment agreement.” I must not sell or share my prescriptions, fill prescriptions at different pharmacies, and ask for an early refill for any reason. I even have to agree to be drug-tested (despite the Supreme Court’s ban on the practice). No signature, no narcotics. Even then, many patients find themselves forcibly “tapered” or “discontinued” from longtime treatments.
Experts point out that these “agreements” destroy doctor-patient relationships built on years of trust.
I note that I’m signing under duress.
April 19, 2017. 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.
I poke around the garden, cutting daffodils for the clinic.
Seeing my doctor’s face again, I’m elated. There’s my health record on the monitor, the ultrasound he uses for procedures, the gurney and its crisp white sheet on which we’ve sat together so often, laughing. He has an open, guileless face. He hates the tight spot we’re in.
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.)
Even with fentanyl, I’m at best a five on the so-called numeric rating scale — where zero is no pain and ten is all pain. Without fentanyl at all, my pain is off the charts, a 15. Imagine your hand pressed onto a red-hot burner. Imagine you can’t lift it off.
I’m like my friend Mike from London, Ont., who tells me, “I will not survive the loss of these medications.” Mike has cervical dystonia, a horrific and rare condition, but even Ontario’s Exceptional Access Program won’t allow him the pain relief he needs, and representatives of the College of Physicians and Surgeons of Ontario attend his medical appointments without introducing themselves or asking his permission.
I tell my doctor about Mike. He writes my refill. He’s unusually quiet, but that’s OK: On death row, no news is always good news.
July 13, 2017. Or is it? Fear gnaws at me. Are you retiring? I ask my doctor repeatedly, trying to pin him down. He has three or four years in him yet, he says — as he always does. But he’s taken on many abandoned patients; his patient load has set off alarms on the province’s prescription database and he’s buried in paperwork. Today he seems withdrawn. He peers at the refill he writes, adding a squiggle to the progress note on the desk. I’m good at reading handwriting upside down, but not his.
I’m not an addict, but I’m beginning to act like one: single-minded, furtive, chock full of rescue fantasies and trapped in the hellish headspace the threat of pain creates.
I try to make him laugh. I published an op-ed about using fentanyl without being a junkie, I tell him, and I’m hearing from my past. 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.”
READ MORE: Eels, opioids and very painful skull incisions: A brief history of pain treatment
READ MORE: Why pain — and pain treatment — is still a grey area of medicine The Canadian Civil Liberties Association doesn’t answer my emails. The Ontario and Nova Scotia Human Rights Commissions inform callers they “don’t get involved in health.” My provincial Ombudsman responds to my complaint. But after asking me to produce an expert witness — a pain specialist who’s had to restart the prescriptions of many abandoned patients — they toss her testimony and retreat from an investigation.
Calgary’s Justice Centre for Constitutional Freedoms, meanwhile, spends months telling me they might help, then decides they don’t have the resources for a Charter challenge. (This is the same group who represented Lorne Grabher, the Nova Scotian denied a vanity license plate lest his last name offend anyone.)
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.”
October 3, 2017. I’m over-corrected.
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….”
There’s a roar in my ears. I sobbed for ten minutes. Between us, we can think of no one he can refer me to who won’t “discontinue” me.
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.
I email my American network, for me this time. A friend in Houston who lost six inches of the spine when she was mistaken for someone else in surgery has finally found a young Vietnamese pain doc who’ll treat me, too. She’ll pick me up at the airport; she’ll put me up. But carrying opiates, or even scripts for them, across the U.S. border? Yikes.
And then, out of the blue, an offer from a kind pain specialist in Alberta for quarterly visits, or at least the first, after which teleconferencing might do. It will buy me at least a year, until he retires. A year to find another year, and so on.
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. An hour later, someone’s thundering down my door so hard the cats’ geyser up from the sofa and vanish: New York police have told Halifax police that I’m “insane,” a jumper. Eventually, they leave, satisfied that I’m staying alive for the moment (and agreeing I’m entirely sane to want to withdraw from a life no longer worth living). They’re so friendly I almost ask them where I can find dealers in Halifax.
November 30, 2017. One month left until the clinic closes and I’m out of pain relief. And then an anonymous voicemail summons me there. I arrive with my husband in the falling dark. Snow is coming down, the first of the year. It’s cold and late. Inside, most of the lights are off. Except for cleaners, we’re alone with my doctor. Media discovered in mid-November that the clinic was closing, throwing hundreds of patients out of care. Several broadcasters interviewed me — and here’s the surprise result. I’m to be saved, perhaps to be kept quiet. Arrangements have been made. I agree to keep them confidential. I can’t disclose them even now. They’ll be temporary. But it’s better than flying to Alberta. It’s the best I can get, and it’s something.
Still, it takes me days to realize I’ve had good news. Then I suffer survivors’ guilt. On my birthday, I hear from a woman in California who’s seen my op-ed and tracked me down.
I don’t know whether you’ve ever been asked this, she emails. I am housebound. I had a serious suicide attempt three months ago solely due to the intractable pain. Can you share your euthanasia plan? I have great trouble figuring out a plan.
I stare at her note. Is it legal to assist a cross-border suicide? Is it a trap? Am I seeing threats that don’t exist because of all that do?
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. I blow out the candles on my cake. I make a wish for mercy for the California woman, whatever mercy means anymore in these cold, dark days; whatever it means for my own body of pain and my mind of winter.