A new definition of pain is out for comment from the International Association for the Study of Pain, an influential global alliance of researchers.
When I heard about it, my hair stood on end. Some people think a new definition could lead to new therapies. But as a 23-year veteran of serious pain from a progressive disorder, I dread losing the old therapy: opioids.
Prescription opioids have lost favor since the national opioid crisis, when a growing number of people fell victim to an increasingly unrelated supply of these drugs. Prescribed drugs, illicit drugs — the distinction between the two, and their respective contributions to overdoses, hasn’t been widely grasped. And so there’s much ado about opioid replacements such as ineffective drugs, “mindfulness,” chiropractic, cognitive behavior therapy, “coping and acceptance,” acupuncture, virtual reality, and more. The problem is that none of these has been proven or even properly tested. New drugs likely to work on severe pain aren’t anywhere near the pipeline. And most of us already know what we’d pick for a broken bone or a kidney stone.
As someone who lives with a lot of pain, I care deeply about pain treatment. In the last two years, I’ve lost care twice, without warning, because of the thoughtless, often self-interested policy that’s fueling the fad to get everyone off pills. My longtime primary care doctor in Halifax, Nova Scotia, threatened by her regulator, suddenly stopped prescribing opioids. Next, the Nova Scotia Health Authority abruptly closed my pain specialist’s practice.
As a writer, I care as deeply about words. Here’s the old definition of pain that the International Association for the Study of Pain (IASP) laid out in 1994: An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.
It ain’t broke. Why fix it?
Here’s the proposed new definition: An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury.
Look what the cat dragged in. Something only resembling damage might cause pain. Despite disclaimers in the notes attached to the new definition, here’s the slippery slope: Pain might result from a verifiable injury, or it might not. It might be an illusion, an inconvenient mental trick. If it’s all in your head, pain obviously won’t need a Percocet.
And there’s more — or in this case, less. Treatment, which was declared a must in the notes accompanying the old definition, goes unmentioned in the notes accompanying the new one.
The IASP is accepting comments on the new definition until midnight on Sept. 11.
One thing I notice about the opioid crisis is this: the more talk, the less pain care. Will a new definition help, or will it harm?
How did we get here? The IASP always seemed to be a good guy in the conversation about pain relief — by whatever methods it takes. Since 2010, the organization has been associated with what was long considered one of the world’s best pain clinics, at McGill University in Montréal. The clinic’s former director is past president of IASP. He’s written thoughtfully about untreated pain, even mourning Spain’s Philip II, a 16th-century Catholic who died in needless agony from cancer while refusing all help but God’s.
Back in 2010, IASP issued its “Declaration of Montréal,” after the city in which it was crafted during the group’s 13th world congress. It’s strong stuff. “Recognizing,” it says, “the intrinsic dignity of all persons and that withholding of pain treatment is profoundly wrong, leading to unnecessary suffering which is harmful; we declare that the following human rights must be recognized throughout the world:
- The right of all people to have access to pain management without discrimination
- The right of people in pain to acknowledgment of their pain and to be informed about how it can be assessed and managed
- The right of all people with pain to have access to appropriate assessment and treatment of the pain by adequately trained health care professionals.”
Who could argue with that?
Almost everyone, it turns out: governments, prescribers, insurers, news media, the public. It’s wonderful that professionals who really know pain once declared these rights for people like me — for all of us, actually, since at some point we’ll all have pain. But who’s listening now? The deprescribing whirlwind has battered many like me beyond repair. However carefully chosen the words of the declaration, they’re not binding in the least.
Dr. Yoram Shir, the current director of the McGill clinic, has said that pain patients on opioids “hate” the drugs. Prescription pills feed overdoses. Doctors should be dissuaded from prescribing them and patients from taking them.
IASP has changed, too, and some of the changes unnerve me. For instance, Christine Chambers, a psychologist, is championing a new IASP initiative called the North American Pain School. Health Canada ponied up $1.6 million for her work to “bridge the gap between current treatments and evidence-based solutions.” At the annual conference of Canada’s pain specialists last year, Chambers brought in her colleague Dr. Jane Ballantyne, the enduring president of the opioid-averse lobbying group Physicians for Responsible Opioid Prescribing, as the conference keynote speaker — and then declined to comment to the media on her choice.
PROP’s executive director, Dr. Andrew Kolodny, has called medical opioids “heroin pills.” Ballantyne famously recommends “coping and acceptance” over drugs for intractable pain, and has been a paid consultant to states suing drug manufacturers, whom they blame for overdoses.
Ballantyne also helped craft IASP’s 2018 Position Statement on Opioids. It advises caution “when prescribing opioids for chronic pain, focusing instead on strategies that integrate behavioral and physical treatments,” because, we’re told, opioids are good only for acute pain, cancer pain, and end-of-life care. When used “indiscriminately” (meaning for chronic pain, according to the statement), we’re also told that the use of opioids has led to “high rates of prescription opioid abuse, unacceptable death rates, and enormous societal burdens.”
Recent research, and much of IASP’s own work, says otherwise. Take, for example, the largest study to date, of 2.2 million North Carolinians, which pegs the risk of dying due to medical use of opioids at just 0.022%.
What, exactly, is pain? It’s not something I need spelled out. But as the IASP rejiggered its answer to that question, did these colleagues weigh in? Another PROP director, Dr. Mark Sullivan, sits on the definition task force, where opinion lists the ship by favoring “nonnarcotic methods” and “risk containment for opioid misuse, abuse and addiction associated with medical prescribing.”
The IASP and its task force comprise many points of view. But even if the rewrite were less trendy, I’d question the need for it.
In our new no-opioids culture, pronouncements like the IASP’s lead to more resources going to “innovations” and “emerging research” that disparage and displace proven therapies, leaving nothing for people living with pain.
What matters is what’s done, not what’s said. George Orwell wasn’t the first to observe that what’s said can be designed to obscure what’s done. Funding attaches to words. Will more parsing mean more mindfulness and acupuncture for victims of head-on car crashes? And more advantage for opioid detractors, whose opinions spell opportunity in the form of research grants, publishing records, jobs, media prominence, speaking engagements, paid testimony and other consulting for law firms, as well as promoting alternative analgesics and addiction drugs for pharmaceutical companies?
Let’s look at who is behind new declarations and definitions, and who isn’t — understanding the players helps us understand the argument. Let’s watch the data, not the news, and check facts and sources. The IASP’s rewrite is on the way to kicking medical opioids to the curb. Maybe we will do that someday, and maybe that will be fine.
But until then, I’ll stick with opioids … if I can.
Dawn Rae Downton writes on health policy from Halifax, Nova Scotia.