Today’s post is another one where there’s very little to guide my thinking… Have you ever wondered why we read so much research looking at the characteristics of the people who look for help with their pain – yet not nearly as much about us, the people who do the helping?
There are studies about us – thanks Ben – and others! (Darlow, Dowell, Baxter, Mathieson, Perr & Dean, 2013; Farin, Gramm & Schmidt, 2013; Parsons, Harding, Breen, Foster, Pincus, Vogel & Underwood, 2007). We know some things are helpful for people with pain: things like listening capabilities (Matthias, Bair, Nyland, Huffman, Stubbs, Damush & Kroenke, 2010); empathy (Roche & Harmon, 2017); trustworthiness (Sessa & Meconi, 2015); goal setting (Gardner, Refshague, McAuley, Hubscher, Goodall & Smith, 2018).
We also know that clinicians who are themselves fear-avoidant tend to avoid encouraging people to remain active, tend to recommend more time off work and more analgesia (see Farin, Gramm & Schmidt, 2013; but also Bartys, Frederiksen, Bendix & Burton, 2017). We also know there is very little investigation of our behaviours and attitudes (Henry & Matthias, 2018). It’s not a sexy area of study, sadly.
So, today I want to point out that there are two of us in a clinic room: yes, the person with all their concerns, catastrophising, depression, avoidance and psychological inflexibility, but we are also in the room. Just as we know couples will vary their behaviour in response to words and actions (Ballus-Creus, Rangel, Penarroya, Perez & Leff, 2014; Cano, Miller & Loree, 2009), I’m pretty certain that the same things happen between a clinician and a person with pain.
What if our attitudes towards pain made a difference? (we know it does). What if underneath our talk of helping people with pain lies a shadow-land where actually we are afraid of pain and distress, where we sincerely believe that it’s unethical to allow people to feel pain and distress because it makes us uncomfortable? And if we are uneasy with another’s distress, or if we are uneasy with another’s presumed distress (because we would be distressed in their place), what might this mean for our approach to pain rehabilitation?
We all think we’re being person-centred in our treatment, I’m sure. Yet at the same time, I think there’s a risk of failing to look at our own blind spots. One of these is our motivation to help. Why do we work in this space? Is it out of a hero complex? To be “the one” who can find the cause, fix the problem, reduce the pain and have a happy patient? Is it out of a desire to be loved? Or because it’s an endlessly fascinating area with so much new research and so much complexity?
What if we have to have a hard conversation? What if our conversation confronts OUR belief that pain is bad, that all pain can change if we just try hard enough and avoid “nocebic language”? In the face of seeing people who have done all the therapies, been the model patient, worked really hard to get well but still have intense and intrusive pain, could we be Pollyanna and change the world by suggesting that person do it all again? Or try yet another something?
How we handle this situation is not yet clear. We have so little guidance as to how best to help – in the past (from the 1980’s, 1990’s, 2000’s) the way forward was clear: “Hurt does not equal harm, we will help you do more despite your pain because pain may change but in the meantime life is carrying on and you’re missing out.” Then along came Moseley, Butler and Louw and acolytes telling us that just by explaining neurobiology and doing graded motor imagery or mirror therapy or graded desensitisation, pain could (read = would) change and because neuroplasticity, pain would go! In fact, some in this group have made it clear that a CBT approach to pain, where learning to live alongside pain, learning to accept that perhaps not all pain reduces, is “shortchanging” people with pain. Kind of like giving up.
But here’s the thing for me: what if, in the pursuit of pain reduction, people lose their relationships, their jobs and stop doing leisure things? What if the pain doesn’t change? What if the pain only changes a little? When does a person with pain decide when is enough?
You see, it is not sexy to admit that pain may not change despite our best efforts. Most of our treatments research shows a group of people who get some relief, a smaller group who get a lot of relief, a group who actually get worse, and most who make no change at all. I want to know how clinicians who really, truly believe in a treatment for all pain, and that all pain changes, handle the people who don’t respond? Because even with the very best approaches in all the world, there is nothing that provides a 100% positive response to pain (except death, and we don’t know what that feels like).
While we espouse person-centredness and informed consent, I think the option of learning to live well alongside pain is rarely given air time. What might be happening more commonly is a narrative where, to avoid our own distress and the risk of “nocebo” or giving up, clinicians present an ever-optimistic picture of “life without pain” if the person will only try hard enough. Driven in part by clinician’s shadow-land fear of pain (and assumption that it’s horrible, awful and a fate worse than…), and by the desire to be loved, thought of as heroic, perhaps compassionate – and nice and good person, and maybe even driven by fear of how to handle a disappointed, distressed person who may themselves feel let down because we don’t have easy answers to persistent pain.
We can dress this narrative up in many ways. We can call to neuroplasticity always being a thing (but remember that nerves that wire together, fire together … and remain there for all time, able to reactivate any time the alternate paths aren’t used) (Clem, & Schiller, 2016; Hayes & Hofmann, 2018). And of course, humans have the additional capability of language and the myriad neuronal connections that allow us to relate one word to many different experiences, objects, relationships. We can call it being positive, enhancing the placebo, being encouraging. We can say we’re on the patient’s side, we only want the best. We can say we know they can and will make changes if we’re positive enough, if we’re good at our therapy, if we believe….
But, is it ethical to present only half the picture? To talk about pain reduction as if it’s the only goal worth going for? To not discuss the “what if it doesn’t help?” To keep self-management, and acceptance and adjusting to an altered self concept out of our conversations, so that people living with pain may not ever know that it IS a thing and can be a very good thing? How is that providing informed consent?
In case anyone’s worrying, I’m honest about my stance on pain: it’s not that I don’t care (because I really do), but pain is often not the problem. Instead it’s having a good relationship with a partner, having fulfilling work, being able to relax and be grateful for a beautiful day or a soft dog or a child’s laugh. I encourage people to look not at what they can’t do, but what they can. At what we can make of what we have. At what’s important and how we can do more that’s aligned with our values. And of it being OK to feel sad when we can’t do things, and angry, and withdrawn and frustrated – because all of these emotions, like all our experiences, are part of life. What matters is how we handle these things. I hope we can allow them to be present, then let them fade as they do over time, making room for new and different experiences that will also come, and then go.
Ballus-Creus, Carles, Rangel, M., Penarroya, Alba, Perez, Jordi, & Leff, Julian. (2014). Expressed emotion among relatives of chronic pain patients, the interaction between relatives’ behaviours and patients’ pain experience. International Journal of Social Psychiatry, 60(2), 197-205.
Bartys, Serena, Frederiksen, Pernille, Bendix, Tom, & Burton, Kim. (2017). System influences on work disability due to low back pain: An international evidence synthesis. Health Policy, 121(8), 903-912. doi: https://doi.org/10.1016/j.healthpol.2017.05.011
Cano, Annmarie, Miller, Lisa Renee, & Loree, Amy. (2009). Spouse beliefs about partner chronic pain. The Journal of Pain, 10(5), 486-492. doi: http://dx.doi.org/10.1016/j.jpain.2008.11.005
Clem, Roger L., & Schiller, Daniela. (2016). New Learning and Unlearning: Strangers or Accomplices in Threat Memory Attenuation? Trends in Neurosciences, 39(5), 340-351. doi: https://doi.org/10.1016/j.tins.2016.03.003
Darlow, Ben, Dowell, Anthony, Baxter, G. David, Mathieson, Fiona, Perry, Meredith, & Dean, Sarah. (2013). The Enduring Impact of What Clinicians Say to People With Low Back Pain. Annals of Family Medicine, 11(6), 527-534. doi: 10.1370/afm.1518
Farin, Erik, Gramm, Lukas, & Schmidt, Erika. (2013). The patient-physician relationship in patients with chronic low back pain as a predictor of outcomes after rehabilitation. Journal of Behavioral Medicine, 36(3), 246-258.
Gardner, Tania, Refshauge, Kathryn, McAuley, James, Hübscher, Markus, Goodall, Stephen, & Smith, Lorraine. (2018). Goal setting practice in chronic low back pain. What is current practice and is it affected by beliefs and attitudes? Physiotherapy theory and practice, 1-11.
Hayes, Steven C., & Hofmann, Stefan G. (2018). Survival circuits and therapy: from automaticity to the conscious experience of fear and anxiety. Current Opinion in Behavioral Sciences, 24, 21-25. doi: https://doi.org/10.1016/j.cobeha.2018.02.006
Henry, Stephen G., & Matthias, Marianne S. (2018). Patient-Clinician Communication About Pain: A Conceptual Model and Narrative Review. Pain Medicine, 19(11), 2154-2165. doi: 10.1093/pm/pny003
Matthias, Marianne S., Bair, Matthew J., Nyland, Kathryn A., Huffman, Monica A., Stubbs, Dawana L., Damush, Teresa M., & Kroenke, Kurt. (2010). Self-management support and communication from nurse care managers compared with primary care physicians: A focus group study of patients with chronic musculoskeletal pain. Pain Management Nursing, 11(1), 26-34. doi: http://dx.doi.org/10.1016/j.pmn.2008.12.003
Parsons, Suzanne, Harding, Geoffrey, Breen, Alan, Foster, Nadine, Pincus, Tamar, Vogel, Steve, & Underwood, Martin. (2007). The influence of patients’ and primary care practitioners’ beliefs and expectations about chronic musculoskeletal pain on the process of care: A systematic review of qualitative studies. Clinical Journal of Pain Vol 23(1) Jan 2007, 91-98.
Roche, Jenny, & Harmon, Dominic. (2017). Exploring the facets of empathy and pain in clinical practice: a review. Pain Practice.
Sessa, Paola, & Meconi, Federica. (2015). Perceived trustworthiness shapes neural empathic responses toward others’ pain. Neuropsychologia, 79, 97-105. doi: https://doi.org/10.1016/j.neuropsychologia.2015.10.028