For many years, Lynn Hill suffered with excruciating pain in her mouth but didn’t know the source. Anything could trigger it: noise, wind, sunlight, cold air, talking, eating — even laughing. She had tooth extractions and root canals and underwent gum surgery. Nothing brought relief.
She changed dentists and, in 2001, was sent to Sunnybrook Health Sciences Centre, in Toronto. There, she was finally diagnosed with trigeminal neuralgia, a chronic-pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. For those living with it, even mild stimulation, such as that caused by brushing your teeth or applying makeup, can cause severe pain.
In October of that year, she underwent a procedure called radiofrequency lesioning, which was supposed to relieve her pain. Instead, it caused a rare complication called anesthesia dolarosa, which made her intermittent pain constant.
“I had the best life before all of this. I was married for 30 years. We rode horses and went camping. I had a lot of friends, and I had my two kids,” says Hill, who, after the procedure, had to quit her job at an addiction-treatment centre. “I went from that to basically living like a shut-in. The pain keeps me up at night, and all my friends have disappeared. I can’t go out and do anything.”
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Hill’s husband left her in 2009. “I basically couldn’t get out of bed,” she says. “He put up with a lot. But he was looking at his wife, who used to be fun and was pretty much not there. He got pretty depressed.” Hill, who was on long-term disability, lost her house. Now 66, she lives in Keswick with her daughter, son-in-law, and 11-year-old granddaughter.
Hill “tried everything out there” to suppress the pain: she visited several clinics, took up meditation, and underwent acupuncture. She was eventually prescribed gabapentin, an anti-seizure medication, and the opioid hydromorphone, which helped. She still couldn’t work, but she was able to cook, see her horses, and spend time with family and friends.
But, in 2017, Canadian physicians adopted a new set of opioid-prescribing guidelines, developed by an international team of clinicians, researchers, and patients and funded by Health Canada and the Canadian Institutes of Health Research, for chronic non-cancer pain.
Opioids are powerful drugs usually prescribed to treat severe pain. If they are abused, they can create feelings of intense pleasure or euphoria. They can also lead to fatal overdose. Public Health Ontario reports that 983 people died in Ontario from opioid overdoses in the first half of 2019. In 2018, 1,474 Ontarians died from opioid-related causes.
The guideline was meant to respond to concerns that Canadians were, per capita, the second-largest consumers of opioids in the world, while opioid-related hospital visits and deaths were rapidly increasing. It recommended restricting the daily dose of opioids for patients starting treatment to fewer than 90 morphine milligram equivalents, down from 200, and tapering those already on higher doses down to the lowest effective dose or discontinuing entirely.
Hill’s doctor dropped her hydromorphone dosage from 96 milligrams to 80 and then to 64 about six months later. In 2019, it was lowered to 48. “I don’t do much now,” she says. “I watch movies on TV. I pick my granddaughter up from the school bus. I take my dog out for a walk. I really have to plan when I take my pain medication each day, as talking or going out causes my pain to increase.”
Her deep ear pain “never leaves,” she says, adding, “My eye feels as if tiny needles are poking it. Brushing my teeth or having a shower hurts. Sinus pain, tooth, gum, and throat pain are constant. This has brought on depression and a sense of hopelessness.”
Barry Ulmer, executive director of the Chronic Pain Association of Canada, says that physicians were pressured by provincial regulatory colleges to follow the recommendations. In 2016, the College of Physicians and Surgeons of Ontario investigated 85 physicians for opioid prescribing. One physician resigned his licence; another was suspended for three years. “So doctors started tapering,” says Ulmer. “If you threaten a doctor with losing their licence, they are forced to taper. In the meantime, who is suffering?”
“When OxyContin was introduced in 1996, it was aggressively marketed,” says Roman Jovey, a physician specializing in pain management and addiction and the medical director of CPM Centres for Pain Management, which operates nine clinics across the province. “The pharmaceutical companies wear some of the responsibility, but not all. Doctors and patients were so desperate for relief. It seemed like a good idea, and a lot of doctors prescribed it.” Between 1991 and 2007, the number of prescriptions written for oxycodone in Ontario increased by 850 per cent.
But some research suggests that the risk of addiction is lower than many assume. A Canadian Family Physician study found that roughly 3 per cent of chronic-pain patients who are prescribed opioids will become addicted. Patients with no history of substance abuse become addicted less than 1 per cent of the time.
Jovey says that most problems arise when a relative or friend of a patient takes the drugs, or when drugs are obtained on the street, where fentanyl is often added. This extremely potent drug dramatically increases the risk of overdose and can cause death even in trace amounts.
But, Jovey says, perhaps the biggest problem in Canadian opioid prescribing is education. Family doctors prescribe the majority of opioids, but they receive little training in pain management — despite the fact that 20 per cent of Canadians are believed to suffer from chronic pain.
“A number of physicians totally misinterpreted the 2017 guidelines. They assumed everyone, no matter where they started, should be on 90 milligrams or less,” says Jovey. “Physicians were scared. They said if you will not reduce, you can leave my practice. Patients have been abandoned in severe pain. There were some people on unnecessarily high doses and, after being tapered, they are doing just fine. But that should be done in consultation with the patient.”
In a November 2019 Chronic Pain Association of Canada report, though, 47 per cent of respondents said they had been forced to reduce their pain medication against their will. In one-third of cases, physicians refused to prescribe any opioids or terminated the patient relationship. Nearly 40 per cent of pain patients had considered suicide, and 5 per cent had made an attempt.
The CPSO acknowledged in an email to TVO.org that the steps it had taken to address opioid prescribing had had unintended consequences: “In fact, we found that the majority of physicians were practising appropriately and that high-dose opioid prescribing has a place in the care of some select patients.”
After a review launched in November 2017, the CPSO council approved an updated policy that, instead of requiring physicians to follow the guidelines, indicates that they should be aware of relevant guidelines and apply them as appropriate. Physicians can use their own discretion when considering each patient.
It also emphasizes the importance of collaboration between physicians and patients and sets out steps that must be taken when setting treatment goals and considering the tapering or discontinuing of a prescription.
“This is a good first step. But they have developed such a culture around this and have moved so many doctors away from prescribing opioids,” says Ulmer. “The culture is so deep and ingrained, it will take a long time to get past it.”
In fact, Hill says that, even after the CPSO announced its new strategy, her physician decreased her medication again, this time to 40 milligrams. “Before the forced tapering, I felt that my physician cared about me and how I was managing with my pain. Now, I feel fear and shame when I visit her office — fear that, with every appointment, my medication will be decreased and that my daily routine will shrink even more. The shame comes from my increasing failure to live with the pain and that I have been forced to live with my daughter and her family for the past 10 years.”
Jovey says that opioids remain crucial, as no chronic-pain treatment has proven effective in the long-term. “We have a toolbox. We have to pull out a tool and see if it works. Opioids shouldn’t be the first thing you pull out. They should be the last — but it depends on the patient and the condition,” he says, adding that education on chronic-pain management should be mandatory for health-care providers.
Health Canada and each provincial regulatory college need to come together to rescind the 2017 guidelines, Ulmer says, and each provincial legislature “must pass legislation to protect those in pain from being denied medicine and protect doctors from unjust persecution when they practice actual patient centred care.”
A spokesperson for Health Canada told TVO.org via email that “the administration and delivery of health care services are the responsibility of each province or territory and the provincial medical regulatory authorities are solely responsible for regulating medical practice within their own respective jurisdictions” and stated that “Health Canada firmly believes that the medical needs of patients, including which prescription medications they should be taking, are best determined through shared decision-making between the patient and their health provider. The (2017) guideline emphasizes the importance of clinical judgement, shared decision-making between the health care professional and the patient, and gradual opioid dose reduction only when patients consent.”
They also cited the Canadian Pain Task Force, which was established in March 2019, noting that “we know from the Canadian Pain Task Force’s first report that some people living with pain are currently unable to access care, including opioid medications when needed, to manage their pain” and saying that “the Government of Canada is working with stakeholders, including the Canadian Pain Task Force, to promote evidence-based and patient-centred opioid prescribing and de-prescribing based on the unique needs of each patient.” The task force collected feedback from stakeholders, including Canadians with chronic pain, and is expected to share the results of the consultation this fall.
“My GP has not given me any solutions,” Hill says. “She doesn't even ask me how I am coping. She can barely look me in the eye. Even though I understand that her hands are tied, this does not make my pain any less. Chronic-pain patients did not do anything wrong, yet we are being punished.”