Pain rehab’s patient-blaming problem

Is a story about being “abused” at a chronic pain clinic believable? Yes — all too easily believed, unfortunately.

The Mayo Clinic’s Pain Rehabilitation Center (PRC) program is a well-known, decades-old interdisciplinary pain rehab program that officially aims to help people “cope” with their serious chronic pain, to function and live better in spite of it, primarily with cognitive behavioural therapy (CBT), acceptance and commitment therapy (ACT), and physical therapy (largely for fitness).

In practice, their methods may sometimes reach past that defensible “live better” goal to the much more dubious premise that pain is actually driven by poor coping, and therefore can be cured by getting people to think and act differently — in other words, treating patients like pain is a psychosomatic problem, caused or perpetuated by their hang-ups and “attitude” about their pain. Consider this review by a young participant, Reddit user WhickenBicken, who characterized his or her experience at the PRC as “abuse”:

I went to the Mayo Clinic PRC program for teens around 4 months ago. It was the worst medical trauma that I’ve ever experienced. First off, the program is $50,000. Way over priced for the abuse that I, and the other teens experienced. It’s a three week program where you attend lectures and physical therapy. When I was looking into going there, I was told “we’ve had teens who arrive in wheelchairs, and walk out on their own.” That sounds pretty impressive.

Fifty grand? Even fifty bucks would be too much to pay for “abuse.” (The $50,000 figure is roughly corroborated by other PRC patients on Mayo’s own forums, who report out-of-pocket costs in that range, but those with insurance paid far less.) It’s a troubling story no matter the price. If true, it was textbook gaslighting:

I was told to stop asking questions, or leave. Now, what kind of questions got me kicked out? Probably something horribly disrespectful right? Nope. There is a term they use called “pain behaviors” which they vaguely described as unhelpful behaviors that one does because of their chronic symptoms. Seems pretty straight forward. And it was until they said that if we are caught doing a pain behavior, our parents are supposed to give us a consequence.

I cannot know if this characterization of the PRC is fair. It might be a gross distortion; WhickenBicken may not be a reliable source, and the Mayo Clinic might well have a reasonable explanation, and there are positive reviews out there too. That said, accounts are mixed even on Mayo’s own patient forums, and the program’s approach has attracted criticism: Dr. Chris Centeno argues that it ignores the mechanical and chemical complexity of pain and reduces everything to a nerve-sensitization story. Centeno runs a competing regenerative medicine practice, so weigh that accordingly, but the critique is recognizable — I have made that very point myself. From his blog post, “Chronic Pain Programs Rise from the Ashes: This Was Silly in the ’90s and It’s Still Silly Today”:

These pricey three-week outpatient affairs touted that all these patients needed was to learn physical and mental coping skills and they would be fine. The problem was that the basic thesis of the program — that patients were in pain simply because they believed themselves to be and learned bad habits because of those beliefs — was not in keeping with the science on pain as it evolved.

Stories about this kind of care aren’t implausible or even unfamiliar in the field of chronic pain management. Both patients and professionals have many reasons to suspect the power of the mind over pain — reasons I have documented extensively. Fierce debates about this are common. The goals of biopsychosocial care are laudable in theory but often missed in practice, and what we see instead is a simplistic, obnoxious overemphasis on the importance of “psychosocial factors.”

Believing that pain is actually caused by social and psychological forces is the beginning of a slippery slope to making patients at least partially responsible for it, and it’s all too easy to actually blaming people for their pain if they don’t get with the program — figuratively or literally (in WhickenBicken’s experience). This works exactly like the more familiar problem of “toxic positivity” (and indeed it is just another form of it): you can’t credit people with the power to make things better with a good attitude without also implying that a bad attitude caused their problems in the first place.

Whether this bad review of the Mayo Clinic’s PRC is fair or not, it resonates with much that I do know to be true, and what most chronic pain patients have seen all too much of: the mind gets the blame. (Sorry, not the mind per se, but nerves that are sensitized by anxiety, fear, and pessimism. There, now it’s a “neurological” story rather than psychological!)