'This Is Destroying My Life. Please, Do Something'

Elizabeth Matlack knew something was wrong as soon as she sat down with her pain doctor two years ago. He usually smiled and asked her how she was doing. That day, he looked like he was about to tell her a loved one had died.

The 38-year-old visual artist, who lives in a small Southern Ontario town, got a sinking feeling in her stomach as her doctor hesitantly explained that he was under investigation by the College of Physicians and Surgeons of Ontario (CPSO) due to his opioid-prescribing practices. He said her file had raised red flags with the medical inspector, who claimed he was potentially putting her and the community at risk by prescribing her so many painkillers. He had to cut back her medication—today.

Matlack didn’t understand how her oxycodone and morphine could hurt anyone else. But drug diversion—when legal pharmaceuticals are moved to the illegal market—is one of many contributors to the unrelenting opioid overdose crisis in Canada, which claimed 12 lives a day in 2018 and has been blamed for stalling life expectancy. Selling or sharing her medication had never crossed Matlack’s mind. Not only is it illegal, she also takes every pill to keep her pain in check.

With the death toll from the opioid crisis climbing, and doctors bearing the brunt of the blame for doling out too many meds, new prescribing guidelines for chronic non-cancer pain were released in the U.S. in 2016 and in Canada the following year. The Canadian guideline encourages restricting the daily dose of opioids for patients starting treatment to less than 90 morphine milligram equivalents (MME), down from 200 in the 2010 guideline, and taper those already on higher doses. Medical regulators eagerly endorsed the guideline and started cracking down on physicians.

As a result, chronic pain patients are having their opioid prescriptions clawed back, often without being offered affordable, accessible and effective alternatives. With 19 percent of Canadians living with chronic pain, hundreds of thousands are potentially collateral damage in the response. And because women are more likely than men to experience chronic pain and be prescribed opioids, they are at a particularly high risk of being affected.

“The inability to deal with high-dose opioid patients is Canada’s hidden crisis,” says Hance Clarke, an anesthesiologist and director of pain services at Toronto General Hospital. “Reducing prescriptions at all costs and causing physicians to fear losing their licences without creating services to help patients isn’t going to end well, and it isn’t going to end anytime soon.”

Desperate for relief

Matlack was born with chronic pain. She cried a lot as a baby, but the cause of her distress wasn’t discovered until she was old enough to tell people that it hurt to sit down. At age three, a tumour the size of a grapefruit was discovered on her spine; her tailbone was removed and she had chemotherapy and radiation. The radiation destroyed all the fat cells in its path, causing her to have a cavity where most people have buttocks. It still hurt to sit down—imagine putting your elbow on a hard surface and resting all of your weight on it—and her childhood was riddled with pain. It wasn’t until her teens that she found some relief in medical cannabis. Reconstructive surgeries in her mid-20s to give her the appearance of a bum and alleviate some of her pain failed on both fronts and left her in a constant state of sciatica.

After the unsuccessful surgeries, Matlack languished on a waiting list to see a pain specialist for two and a half years. When she got in, the doctor (a different one than she has now) had her try aquafit, chiropractic treatment and anticonvulsant medications before prescribing opioids. “When I started opioids, my life changed completely,” she says. Matlack was able to help her husband with his construction business, go for walks and swims, create art, and take care of her rescue cats and dog. “My pain was finally being managed. I was living my best life and then they just slammed the brakes on me.”

For five years, she’d been stable on a dose that was more than seven times the new ceiling. When her doctor discussed starting her taper by reducing her medication by roughly a third, Matlack tried to negotiate and fight back tears—eventually losing at both. Her doctor was sympathetic but said he couldn’t compromise; his medical licence was at stake. “It was painful for her and it was painful for me to do this to her,” says the doctor, who agreed to confirm the details of Matlack’s story on the condition of anonymity. “This was being forced on both of us.”

The withdrawal kicked in almost immediately: For about a month, Matlack had intense headaches, cold sweats and mood swings, all of her muscles ached and she was utterly exhausted. Many days, she didn’t even get out of bed. The pain now radiates across her back, stabs through her hips and shoots down her right leg and back up on a never-ending loop. She hasn’t done any art shows since her opioids were cut back, and she’s bailed on plans so many times her friends stopped inviting her out.

“I’m in severe pain every day,” she says. “It’s just unbearable. I can’t sleep. I can’t concentrate on anything. I literally cannot function. It’s completely debilitating. I’ve strongly considered suicide many, many times. Just being alive hurts.”

Matlack is not alone. An Angus Reid survey released last July of more than 3,000 Canadians found that 37 percent of those living with severe pain have experienced difficulties accessing prescription pain drugs. Another survey, conducted in 2018 by researchers at the University of Montreal, found that about a quarter of chronic pain patients using opioids in British Columbia were asked by their doctors to stop taking their medication in the past year.

When chronic pain patients lose access to opioids, the effects can be devastating, says Maria Hudspith, executive director of Pain BC. Many people become debilitated and can’t work, take care of their families or do the things they enjoy. Some, so desperate for relief, turn to the illicit market. The University of Montreal survey found that 25 percent of British Columbians who stopped taking opioids in the past year disagreed with the decision and 15 percent obtained the drugs from friends, family members or dealers, making them vulnerable to overdose. Others take their own lives. People with chronic pain are twice as likely to die by suicide, and risk factors include depression, difficulty sleeping and increased episodes of pain—all of which intensifies when pain is undertreated.

“There has been a very rapid pendulum swing in the way that physicians and medical regulators think about prescribing opioids,” Hudspith says. “We’ve seen many people aggressively weaned off opioids, sometimes without their consent and with very dire consequences. We’ve seen a knee-jerk reaction and a simplistic response to a complex problem.”

The rise and fall of opioids

Pain is the most common reason people go to the doctor. Whenever possible, doctors treat the underlying issue, but when pain persists longer than three months, it becomes a chronic condition unto itself that rarely has a cure. Getting help isn’t easy. Chronic pain is a stigmatized and invalidated condition, and women are less likely than men to be believed by health practitioners. It’s also a complex condition, and a person’s mental health, coping skills, social supports and expectations all play a role in how they experience it. “Pain is not simply a sensation,” says Tania Di Renna, medical director of the Toronto Academic Pain Medicine Institute. “When I have abdominal pain, I think I’m going to die because my mom died of ovarian cancer. There’s a lot of emotion in pain.”

For decades, medical consensus has held that the optimal way to manage chronic pain is with a combination of psychological, physiological and pharmacological treatments, known as the three Ps. In the 1950s, multidisciplinary chronic pain clinics started opening, bringing together teams of health care providers to administer the three Ps in one place. But due to their limited number, location in big cities and long waiting lists, they’ve never been accessible to the majority of Canadians.

Opioids never used to be prescribed for chronic non-cancer pain out of concerns they were too addictive. That thinking shifted in the 1990s, when pain specialists and patient groups started advocating for better relief. OxyContin (long-acting oxycodone) arrived on the scene and was aggressively marketed by Purdue Pharma, which downplayed the drug’s potential for addiction and said there was no limit on how much a patient could be prescribed.

Many physicians believed Purdue and started liberally prescribing painkillers. Soon, Canada became the second biggest consumer of opioids in the world, after the United States. A lot of those pills ended up on the illicit market, and some people with prescriptions developed substance use disorder.

However, according to a 2016 review article in the New England Journal of Medicine, fewer than eight percent of chronic pain patients who take opioids become addicted to the drugs. “This is a mental health and addiction issue. Opioids just became easily accessible and the drug of choice,” Clarke says. “Most people do not become addicted to their opioids. However, there is a subset of patients who have mental health and substance use disorder issues, and these are the individuals we must keep a close eye on.”

As more opioids were dispensed, more people died of overdoses. Between 1991 and 2007, the number of prescriptions written for oxycodone in Ontario skyrocketed by 850 percent, and opioid-related deaths doubled between 1991 and 2004. In response, provinces started withdrawing their funding of OxyContin in 2012, but illicit fentanyl-like substances—drugs that are 100 times stronger than morphine—hit the street, filling the gap with a more dangerous substance and causing the death rate to spike. In the first nine months of 2018, fentanyl was implicated in 73 percent of opioid deaths.

While prescription opioids were an early driver of the crisis, illegal fentanyl flowing from China has taken over—but medical regulators still wanted to curb prescriptions. “When the opioid crisis broke, there was a huge outcry,” says Steve Bodley, past president of the College of Physicians and Surgeons of Ontario (CPSO) and an anesthesiologist with a pain management practice. “Given the climate, the College really felt it had to respond.” In November 2016, the CPSO announced it was investigating 84 physicians for their opioid prescribing, including Matlack’s doctor. Fifty-seven doctors who are still practising faced different degrees of action (including losing their opioid-prescribing privileges or having their practices monitored), four stopped practising and one lost his licence.

Norm Buckley, director of the Michael G. DeGroote National Pain Centre at McMaster University—the organization that released the Canadian guideline—says some nuances got lost in translation. “We have had issues with the way people interpret the guideline and the way they apply it,” he says, pointing out that it says tapering may significantly increase pain and decrease functioning and may need to be paused or abandoned. “The response from many physicians has been, ‘I don’t want the College to even know I exist, so I just won’t prescribe opioids.’ ”

The CPSO says this wasn’t the intent. “We’ve spent a lot of time and energy making it clear to physicians that we are not expecting them to taper their patients and we do not support having patients arbitrarily taken off their opioids,” says Bodley. “You can stray outside of the guidelines as much as you want as long as you provide good clinical rationale for doing so.”

But that’s not the message Matlack’s doctor got. Over six months, he continued to wean Matlack while his practice was under supervision. At one appointment, Matlack told him she had called the CPSO to complain about the forced tapering and they told her prescribing was at his discretion. Frustrated, he showed her the medical inspector’s report on his practice with a shocking recommendation next to her assigned number: “This patient should have been immediately cut off opioids with the second seriously adulterated UDT.”

UDT stands for urinary drug test, which Matlack has to take at every appointment. False positives are common and samples showing non-prescribed drugs are sent for lab testing to verify the results. Matlack is adamant she has never taken any drugs other than what’s prescribed to her, and her doctor doesn’t recall any positive confirmations from the lab. (The inspector also raised concerns with the doctor’s recordkeeping.) Even if she had taken other drugs on occasion, cutting her off her pain medication wouldn’t be warranted, Matlack’s doctor says. “Without knowing Elizabeth, without ever seeing her, [the] just made this conclusion,” he says, “which was kind of scary.”

Shae Greenfield, senior communications advisor with the CPSO, says the inspector’s assessment is advice, not a directive, and the College would never instruct a doctor to cut a patient off opioids. Matlack can file a complaint against her doctor about the forced tapering, Greenfield says, adding that similar cases have been investigated. Matlack says her concerns are with the College, not her doctor, and that she wrote the regulatory body an email following two calls and hasn’t received a response.

To rule out substance use disorder, Matlack’s doctor sent her to an addictions specialist, who said she’s experiencing pseudoaddiction, a condition that resembles addiction but is caused by undertreated pain. At the end of the taper, she was getting about a quarter of her original dose—which is twice as much as the recommended maximum but not nearly enough to manage her pain. “At every appointment, I beg,” Matlack says. “‘This is destroying my life. I can’t do this anymore. Please, do something.’”

But he can’t. “I like you,” her doctor told her. “But I like my licence, too.”

Left in the lurch

The outcome of the crackdown on prescribing physicians was predictable, Clarke says. While the quantity of opioids dispensed in Canada went down by 10 percent between 2016 and 2017, opioid-related deaths increased by 36 percent.

“Our death toll is only going to get worse as we have hundreds of thousands of high-dose opioid patients out there and we’re abandoning them,” Clarke says. “That’s a population that’s in extreme jeopardy.”

When patients lose their doctors or are cut off their medication, it’s virtually impossible for them to find new doctors to prescribe them opioids due to the climate of fear, says Barry Ulmer, executive director of the Chronic Pain Association of Canada. “Patients are just being dumped and have nowhere to go,” he says, adding that an Edmonton doctor was recently forced to close his pain clinic, leaving more than 900 patients in the lurch.

The guideline says other drugs and non-pharmacological treatments should be optimized before opioids, but patients may have already tried other medications without success or be unable to access or afford physical and psychological therapies. There are just over 100 multidisciplinary chronic pain clinics across Canada, but none on Prince Edward Island or in the territories, and the median wait time is six months. Cobbling together your own three Ps is prohibitively expensive for most Canadians: Just one physiotherapy session, for instance, can cost upward of $190.

For some people, opioids are an essential part of their pain management regimen. A study of chronic pain patients in Quebec published in 2018 found that one in five experience a meaningful reduction in pain with long-term opioid therapy. “Opioids are not some miracle medication, but it’s really important to realize there are patients who do benefit,” says Manon Choinière, one of the authors of the Quebec study.

However, there is widespread acceptance in the clinical community that doctors prescribed too many painkillers for too long and the guideline offers an appropriate path forward. “At one point, we were too liberal,” says Choinière. “Now we have to be more conservative, but, at the same time, provide adequate treatment. There needs to be a return of the pendulum.”

Finding the right balance

While patients who rely on opioids wait to see where the pendulum will settle, the landscape of chronic pain care is changing. In April 2019, the federal government announced the creation of the Canadian Pain Task Force, which will address the barriers that chronic pain patients face in getting care. Its first report, which came out in July, found that health care professionals lack the knowledge and skills to treat pain, specialized pain services are largely inaccessible, and anxiety and fear around opioids have led to unmanaged pain.

“We need to balance the concerns about the harms of opioids with an equal or greater concern for managing the suffering of Canadians who live with pain,” says Hudspith, who is co-chair of the task force. “Well-intentioned public policy has harmed significant numbers of patients and we need to correct that.” The reality is starting to sink in. In a statement to Chatelaine, CPSO registrar and CEO Nancy Whitmore and past president Bodley acknowledged the impact of the investigations and said the College is in the process of updating its opioid strategy.

“In the past, the College recognized the need to help address the emerging crisis and to ensure appropriate prescribing by physicians,” they write. “We acknowledge in retrospect that the steps we took to address opiate prescribing concerns had unintended consequences that were not fully realized or appreciated.”

Meanwhile, some barriers are starting to be addressed. In 2014, Clarke established the Transitional Pain Service (TPS) at Toronto General Hospital to provide multidisciplinary care before and after surgery. A 2018 study found the program helped nearly half of new opioid users and a quarter of experienced opioid users wean off the drugs within six months. The model has been replicated at a few other hospitals with more coming on board.

Kristen Steele credits the TPS with helping reduce her severe back pain and dependence on opioids. The 53-year-old first hurt her back in her 20s—herniating a disc when she was working as a cook—and sustained several other back injuries throughout her career in the physically demanding hospitality industry. For about two decades, she took codeine, which allowed her to work but clouded her thinking and made her tired. As her two daughters got older, they started to notice, and Steele felt guilty she couldn’t always be fully present with them. It was an unrelated diagnosis of breast cancer at the age of 48 that changed the way she manages her pain.

After Steele had a bilateral mastectomy, her surgical sites became infected and she had to undergo several surgeries to clean the wounds. Once she maxed out on opioids to manage the post-surgical pain, the team at the TPS helped her wean off them over the course of several months and access holistic care. She saw a psychologist, psychiatrist and physiotherapist, and participated in group yoga, tai chi and mindfulness meditation. She was also put on a new pharmacological plan that includes cannabis and a small dose of morphine that she only takes when needed.

“Everything they offered helped lessen my pain and helped me cope,” Steele says. “It’s not just about opioids. Acupuncture, mindfulness and just going for a nice walk are really important, too.”

In terms of pharmacological alternatives, cannabis is garnering a lot of interest. Some studies have found the drug may reduce pain while others have found no benefit. The Angus Reid poll revealed nearly three-quarters of people with chronic pain who used cannabis found it to be effective, the highest number of any physical or pharmacological treatment. But experts agree more research is needed. “Currently, it’s being suggested that cannabis can lead to world peace, cure cancer, as well as conquer chronic pain. That may be an overreach,” Buckley says. “Cannabis may be useful, but it’s still early days. It’s a mistake to assume it will fix all our problems—that’s how we got into the problem with opioids.”

In the research community, the race is on to create a new opioid that delivers pain relief without the euphoria (which leads to addiction) and the respiratory depression (which leads to death). A 2018 study found a new compound, AT-121, can do just that—in rhesus monkeys. Determining if the drug is safe and effective for humans will take many years. And the difference in how men and women respond to pain medications is now being examined. Until recently, virtually all studies were done on male animal models, so this work could lead to better pain treatment for women.

In the meantime, many patients are hoping to get their opioids—and their lives—back. In June, Matlack finally got in to see a doctor at a multidisciplinary chronic pain clinic, nearly two years after her doctor referred her for a second opinion. The new doctor agreed her pain wasn’t being properly managed and tested her for sleep apnea and bowel dysfunction, which are associated with opioid use, to see if bumping her dose back up would be safe. He also referred her to an occupational therapist and a pain management class. When Matlack saw her regular doctor a month later, he gave her the good news: He could start slowly increasing her dose. It was a bittersweet moment.

“It’s a start and it gives me hope for the future, but it’s no guarantee. I’m far away from getting my life back completely,” she says. “Eliminating your own pain should be a basic human right. Nobody should be able to take that away from you.”

COPING MECHANISMS

Research shows that active self-management programs can help reduce pain. Programs help people understand how chronic pain works, learn coping strategies and relaxation techniques, develop pain management plans and connect with other chronic pain patients. Both the Toronto Academic Pain Medicine Institute and Pain BC have programs that can be accessed online.

RISK ASSESSMENT

Like all drugs, opioids have risks, which tend to increase with dose and duration. Some people develop tolerance and need ever-increasing doses to achieve the same reduction in pain. Opioids can even make some people more sensitive to pain as their bodies try to counteract the effect of the drugs, a phenomenon called opioid-induced hyperalgesia. One of the most serious side effects of opioids is slow and ineffective breathing, which occurs during overdose and can lead to death. The drugs are also associated with sleep apnea, constipation, osteoporosis, low libido and fatigue. Research shows, however, that chronic pain patients are more willing than others to accept the risks because the impact of pain on their lives is so great.

A PAINFUL DISCOVERY

There is still a lot we don’t know about how the body perceives pain. This summer, scientists at the Karolinska Institute in Sweden discovered a new pain organ in the skin. They plan to look into the role it might play in chronic pain disorders.

CRISIS MANAGEMENT

Across North America, governments have launched thousands of court cases against pharmaceutical companies as a way to recoup the health care costs associated with opioid addiction. In 2018, British Columbia’s attorney general filed a proposed class-action lawsuit against dozens of companies, alleging they falsely marketed opioids as a less addictive pain medication. This fall, Alberta announced it will sign on to the class action suit; Ontario, New Brunswick, and Newfoundland and Labrador plan to join as well. Plus, U.S. drug giants were in talks in October to settle the more than 2,000 lawsuits against them over their role in the opioid epidemic. It’s estimated these large pharmaceutical companies could pay up to US$50 billion.