Today I went on a drug-fuelled hiking trip with my twelve year old son. He wasn’t on drugs, of course. I was.

I spent much of my two kids’ childhoods in a haze of pain due to ankylosing spondylitis (AS) and, sometimes, the NSAIDs that are the first-line pharmaceutical treatment for it.

In AS, inflammation erodes the ends of the vertebrae, which, like irritated oysters, then deposit bone in the spaces between them. Sadly, this does not leave the sufferer of advanced disease with pearl for bones, but rather with a bamboo-like rod for a spine. It’s a chronic, degenerative and variable disease. It’s not a disease of modern life (the Egyptian pharaohs Amenhotep II and Ramses II both had it), nor of lifestyle. Still, the cornerstone treatments are lifestyle-based, focusing on the vital role of exercise and lying flat to ensure that if fusion occurs, I end up frozen in a straight rather than a bent-over position.

My memories of the early years of parenthood include desperately looking for somewhere to lie down among the crowds on a trip to the Toronto Islands; pacing in restless circles–exhausted but only constant movement relieving the pain–in the park while the boys played in the dirt; trying and finally giving up on helping my sons learn to ride their bikes because bending over was too painful.

Even now, I almost never sit down in the waiting room where my long-time doctor is part of a busy family practice. Instead, I pace the waiting room, walking in circles and stopping frequently to stretch: hamstring, quads, that intensely tight, ropy sternocleidomastoid.

AS is fundamentally a disease of pain, one that starts during one’s most productive and responsibility-laden years. As with other long-term pain conditions, the experience of pain deeply colours every aspect of the sufferer’s life. It is hard to adequately express just how dramatic this is. Undiminished pain inevitably affects other aspects of mental and physical health that the physician is then called upon to deal with. Inadequately treated pain exacerbates existing poor social determinants of health as well as quickly thrusting the pain patient and their family into poverty and its vicious circle of health effects.

If I want to sit at all in that waiting room, (or if I want to enjoy a cold spring walk in the forest with my son) I now take a low dose of a synthetic opioid first. The drug eases pain so that normal life is in my grasp again. Under its influence, I can carry out the long, monotonous daily regimen of stretching that relieves stiffness and maintains my range of motion. It enables me to sit to write this essay, and to take a car or a plane ride, things previously impossible for me. It allows me to sit through a movie with my boys, the simplest of pleasures. These things were punishingly difficult before opioids. Although I continued to work, the strain made me less and less productive and eventually I worked very little and, as a result, lived well under the poverty line. Worst, the most rewarding years of my kids’ childhoods are tarnished for me by the real agony in which I spent them, and by the effort I expended to avoid contaminating my kids with resulting depression.

Along with other medication to disable my overactive immune system, and hard, daily, time-consuming psychological (mindfulness and acceptance and commitment therapy) and physical (aerobic exercise and stretching) work, opioids now allow me to have something that resembles a normal life despite an unpleasant degenerative disease, to earn a semblance of a living, and to manage parenting.

“A low, effective dose of an opioid is the most sensible, and merciful, option for me, for now.” 

The reason I use an opioid rather than another treatment is that over the course of half a decade, the range of alternative treatments successively ripped a hole in my esophagus (despite taking proton pump inhibitors, which of course come with their own long-term risks), gave me constant and debilitating heartburn, caused excessive weight loss (all naproxen), caused vomiting and further weight loss (meloxicam), made my hair fall out, gave me paradoxical psoriasis, and stopped working (both the biologic adalimumab), and cause dizziness, heartburn and stomach upset (methotrexate), among other adverse effects.

Psychological and behavioural treatments are good things. My sixteen-year yoga practice serves me well now that I have to stretch slowly, painfully, and thoroughly just to get out of bed. I’ve taken the mindfulness-based stress reduction course and it was very helpful through two completely drug-free labours–but is not adequate for hour upon grinding hour of pushing through pain in order to move my stiff joints. I trained to become a peer educator for the Stanford Chronic Disease Self-Management program, but as the only person with ongoing pain in the group and the only one who had trouble either standing or sitting while delivering a workshop, I learned that the existential and functional challenge of long term pain is completely different than that of managing a condition like diabetes or hypertension. I can meditate through pain–but I can’t do it while being quizzed on the relative merits of Black Panther versus Spiderman, or while focusing on the difficult task of holding my head up straight, or while writing a magazine article.

I could avoid opioids by spending my day in an extremely hot bath, but I am just forty years old and a single parent and I unfortunately can’t spend my day in the bathtub.

Every treatment for my condition includes death as a possible side effect and comes with little or no evidence relating to either long term effectiveness or long term harms.

A low, effective dose of an opioid is the most sensible, and merciful, option for me, for now. The order of operations my doctors followed several years ago is precisely the order that best available evidence endorses, which is to not use opioids as first line therapy, and to consider non-pharmacological treatments and non-opioid medications first.

When not being a human guinea pig, I earn my living writing about evidence for both lay audiences and medical professionals. I’ve read and spent a lot of time understanding the various guidelines around opioid prescribing and the evidence they’re based on.

The Opioid Wisely recommendations are generated by eleven different organizations, including both representatives of medical specialties, and pharmacists, occupational therapists, sports medicine practitioners, rehabilitation professionals, and chiropractors. The recommendations are based on an evolving understanding that the role of opioids in pain care (whether acute or chronic) needs to be more cautious.  The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain (or McMaster Pain guideline) is the key document guiding this consensus in Canada. It was explicitly drafted to respond to concerns about the high relative rate of opioid prescribing among Canadians (we’re second to the US in legal opioid use per capita). It doesn’t specify what would be a reasonable rate.

This guideline seeks to minimize the risk and harms and maximize the benefits of any opioid prescribed specifically for chronic pain, while strongly aiming to reduce the total volume of opioid prescribed (recent findings that Ontario has shifted to more but shorter prescriptions can be seen as a positive response in that prescribing is becoming more cautious but still responsive to genuine patient need).

The Canadian pain guideline closely but not completely follows the game-changing 2016 Centers for Disease Control (CDC) guidelines from the US, which have dramatically changed the landscape for opioid prescribing south of the border.

Informed pain patients, looking at the U.S. experience, have reason to be concerned at how an individual physician might choose to apply recommendations.

To date, dozens of suicides after forced or coerced taper have been by and large ignored by restrictive prescribing advocates, although they are increasingly unnerving to other physicians. These suicides can be attributed variously, depending on the details of the case, to a cruel and sudden taper and the shock of patient abandonment or denial of the drug, and in other cases to the loss of function and quality of life a patient may experience months after a responsibly slow and technically “successful” taper, when an adequate alternative does not exist or is not found to deal with the underlying pain condition for which the opioid was prescribed. In this case, the successful taper to a currently acceptable, population-prevalence-of-risk-based morphine milligram equivalent (MME) is a case of “the operation was a success, but the patient died”.

Decreases in morphine equivalents per capita have occurred abruptly and unevenly across the U.S., often without regard for patient safety. Over-zealous and incorrect interpretation of the guidelines by insurers and a range of governance bodies has resulted in legislation of varying maximum morphine equivalents that a patient can be prescribed (including to patients who have done well on such MMEs for years), in prescribers engaging in forced tapers of previously stable patients, in practices becoming “no opioid” clinics, and in testimonials of reduced function and capacity to care for children or parents, to leave the house, or to keep a job. Meanwhile, the rates of use and fatalities from illicit opioids have risen dramatically, which may or may not be linked, but is likely at least partly the result of people with opioid use disorder moving away from prescription opioids towards more accessible, illicit alternatives; it may also reflect pain patients seeking alternative pain relief. CDC authors have, belatedly, begun to acknowledge that substantial numbers of overdoses attributed to painkillers were actually likely caused by illicit fentanyl. And eight other CDC authors have joined a group of 220 healthcare practitioners in signing a passionate letter opposing a plan to severely restrict opioid access to Medicare patients in the name of patient safety.

“I remain concerned about the risk of doctors absorbing a strictly anything-but-opioids message, rather than focusing on the overall well-being of the patient in front of them.”

In fact, the Canadian and CDC guidelines lean on a similar body of evidence, are similarly ultimately based on the consensus of a selection of influential experts rather than being a Cochrane-like meta-review of evidence (although the Canadian guidelines are much better in this respect), and even involve input from some of the same people. However, with the new Opioid Wisely recommendations, Canada continues to chart an independent, cautious but compassionate approach to maximizing pain patient well-being and minimizing harms, focused on the well-being of both individual patients, and avoidant of unintended outcomes such as stoking the extraordinarily dangerous illegal drug market, increasing alcohol/substance use or use disorder or family breakdown, under treatment of pain in children, or instigating patient mental health crises and suicides.

This is reassuring. Opioid Wisely, and Health Quality Ontario’s new quality standards for opioid prescribing, reflect reasonable caution given the mixed quality of available evidence. In general, both sets of recommendations emphasize the importance of not starting with opioids for long term pain, but rather, initiating a trial of a low dose opioid only after maximizing the likely benefits of other treatments and after finding that alternatives are not tolerable to the patient or are inadequate in helping them to cope.

I remain concerned about the risk of doctors absorbing a strictly anything-but-opioids message, rather than focusing on the overall well-being of the patient in front of them.

Here, for example, is a reasonably cautious statement about the risk of self-perpetuating opioid treatment for a pain condition that has actually resolved [emphasis mine]:

“When the drugs are tapered too quickly, withdrawal symptoms ensue, but they resolve with continued treatment. It’s not hard to see how this can sometimes fuel the perception that a drug is effective or even essential even when it’s not really helping” (completely correct, from a November 2017 op-ed by Dr. David Juurlink, head of the Division of Clinical Pharmacology and Toxicology, Department of Medicine, at the University of Toronto)

And here is how a similar idea has been understood by a student doctor [emphasis again mine]:

“[…] it is my belief that most chronic pain patients take opioids to avoid withdrawal symptoms (including acute escalation of pain, prompting them to believe they need the opioids for pain control). Heroin addicts and patients taking chronically prescribed opioids for pain are largely physiologically equivalent-the only difference is the drug dealer”. (forums.studentdoctor.net)

The latter belief is extended from withdrawal symptoms upon attempting a taper to withdrawal symptoms universally guiding perception of benefit during regular use. It doesn’t reflect evidence, but it does reflect the words of a prominent U.S. advocate for restrictive prescribing, who says of opioid painkillers, including low-dose, oral opioids, that “they’re essentially heroin pills” (they’re not, as Paracelsus would tell you. Nor should ADHD medications be described as speed).

When prescribing appropriate and effective medication is considered “giving in” to one’s “drug-seeking” patients, we must then deal with guilt, anxiety, and shame about our use of our palliative (i.e. intended to make life bearable, not to cure a disease) treatment. This is only likely to result in us being reluctant to seek help if we are in the very small minority who develop an opioid use disorder. Unwarranted shame about dependence, an expected and manageable outcome, will also increase resistance to medication assisted treatment for opioid use disorder, and reluctance to take antidepressants even if they are the best option for a given patient.

The Opioid Wisely campaign is, like the CDC guideline process, based on consensus of a selection of experts in different fields. Historically, Choosing Wisely Canada has emphasized conversation and empowering patients to a reasonable extent by encouraging them to be less passive: “ask your doctor if you really need this test, this treatment, this prescription, even this diagnosis”. It is a wonderful approach because in fact we often submit to treatment because we think we need it, and doctors often offer treatment because they think we want it.

Most patients don’t actually like opioids. They’re not a popular drug in that sense. Part of the reason there are so few good long-term studies of opioid treatment for chronic pain is that the drop-out rate due to side effects and patients not liking how the drug makes them feel is consistently high.  Given all this, there’s no reason to suggest them before you’ve thoroughly tried out alternative treatments and coping strategies.

With the opioid I take, tramadol (a drug with its own distinct risk and benefit profile that some patients nevertheless tolerate much better than other opioids), I receive significant relief from pain, with no side effects to date. This periodic relief has allowed me to reclaim a substantial part of the life that ankylosing spondylitis (and then NSAIDs) took from me.

Conversation with my doctor is important for both of us. Over years, my doctor has been able to observe that I use the drug responsibly and at the minimum effective dose—and frequently less, choosing to live with daily pain in order to keep my opioid tolerance low and to know how I am really doing. Because all the treatments that can help my underlying condition have serious side-effects, any time the disease “flares” or worsens, we need to carefully balance the risks of opioids against the risks of treating the disease more aggressively. I haven’t experienced side effects but if I did, we would need to balance the harms caused by these against the benefit offered by the drug.

“A thoughtful approach to opioid use for chronic pain will protect both individual patients’ medical needs and public health.”

I’ve been able to observe that my doctor knows I am a responsible user, that he is aware of all I do to manage my own condition, and that he appreciates my values and goals and my personal tolerance for risk. For example, in order to take on more paid work, or to get on a plane, my doctor and I have agreed that I can typically increase the amount of tramadol I take, still within the limits of the original prescription (the lowest typical starting daily maximum, which I have never exceeded and rarely taken over 6 years). This means the drug is functioning as it should—as a tool to enable a fuller life than I can achieve through any other means.

We do need a plan for if tolerance increases to the point that I need to raise the dose too much. So we discuss this frequently. The available options include rotating to another opioid for a time, trying various other ways to more aggressively control inflammation, and trying a synthetic or natural cannabinoid to provide pain relief while allowing me to reduce my tolerance to the opioid. With my doctor’s help, I also continue to seek ongoing psychological support for dealing with pain.

Although dialogue is a vital part of my treatment now, when I was first prescribed an opioid I was not told what I was taking (I googled and quickly learned that it was an opioid, and about the risks involved). I was not counselled about safe storage (effectively locked cabinet) and disposal (flushing is fine) or about potential side effects. I don’t think that would happen now. In this sense, opioid prescribing practices have advanced over the past few years. At the same time, there is reason to be concerned that the pendulum could swing too far the other way, where patients who do genuinely need opioids for their pain don’t get the help they need.

A thoughtful approach to opioid use for chronic pain will protect both individual patients’ medical needs and public health. This approach needs to include better clinician-patient conversations, which should be informed by science and patient needs, rather than fuelled by fear and the rampant stigma surrounding opioid use, even in those cases where it remains the best treatment for a particular patient who has exhausted the available alternatives.

No patient should be treated as a morphine equivalent, a prevalence statistic, an addiction risk or a lawsuit. A new NEJM commentary proposes that physician emotional well-being, rather than patient well-being, is the prime driver of American doctors refusing to prescribe opioids even where appropriate. I am hopeful that a more evidence-based and compassionate attitude will prevail in Canada. Better and more fulfilling communication with pain patients—who can be the most grateful of patients, not because you write them scripts, but because you are a vital partner in helping them to thoughtfully weigh the multiple factors that make difficult lives more manageable—has the potential to improve physician job satisfaction as well as patient care.

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Carlyn Zwarenstein is the author of Opium Eater: The New Confessions, one of the Globe & Mail’s Best 100 Books of 2016. Carlyn has been a freelance journalist for around two decades and has written about pharmaceutical conflict of interest in medicine, about both equity and evidence in health, and about the mental healthcare system. She is also a plain language writer for social purpose, science, and medical organizations, is working on her second book,and is currently health editor for a major pregnancy and parenting website.