There are two of us in this…

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:

Cano, Annmarie, Miller, Lisa Renee, & Loree, Amy. (2009). Spouse beliefs about partner chronic pain. The Journal of Pain, 10(5), 486-492. doi:

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:

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:

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:

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:

Self-care or medical care for low back pain: what patients want
For a while I’ve been asking what constitutes ‘self management’ for chronic pain. On the one hand there are a group of people who firmly believe that regular medical treatment (including injections every three months or so) is a perfectly legitimate way to maintain a normal life. On the other hand there are people who equally firmly believe that self management means as little contact with a health care provider as possible, and certainly no hands-on or injection therapy.

This study is an old one, dating from 1999, but there’s no reason to believe the findings differ too much from what we’d find today. It was conducted by Saunders, VonKorff, Pruitt and Moore, based mainly in Seattle, and looks at the extent to which specific patient attitudes and beliefs about medical care and self-care for back pain predict future healthcare use.

The study design involved a five year follow-up of patients who had attended Group Health Cooperative of Puget Sound.  All patients were primary care patients, so unlike many studies, these people were not necessarily seen in a tertiary hospital setting.

There were three groups of patients: the first group of around 1200 were recruited in 1989 and 1990, and were adult primary care patients with back pain, interviewed by telephone up to 5 years after recruitment.  In 1994 and 1995, over 1000 patients were enrolled in a long-term study in which participants at one month after an initial consultation for low back pain were given questionnaires that included self-care vs. medical care orientation questions – these were recruited from a Pain Register.  The final group were recruited from a large study of people invited to participate in a four-session psychoeducational programme for low back pain.  A small number of participants were studied (120).

The 5-year follow-up and Pain Register Baseline samples
allowed the evaluation of 11 questions to assess self-care vs.
medical care orientation and their ability to predict back
pain-related healthcare use. The Randomized Trial sample
allowed the examination of the impact of a back pain selfmanagement
intervention on attitudes and beliefs shown to
predict future healthcare use.

Three main measures were used in the study – a specially designed questionnaire of attitudes and beliefs toward self-care and medical input (this questionnaire is published in the article – useful future reference!); pain intensity and interference was also measured using VAS and categorical ratings; and healthcare use data was obtained from the healthcare services healthcare visit and pharmacy databases.

Descriptive statistics were calculated and differences
between groups were examined using chi-square tests. Internal
consistency reliability was estimated using Cronbach’s
a-coefficient and factor analysis was conducted using a
varimax rotation requesting a 2-, 3-, and 4-factor solution.
Multiple regression analysis was used to test potential
differences between group means, while controlling for
pain intensity and pain interference.

Cutting to the results I was interested in (you can read the descriptive statistics and details in the article itself), what predicted higher health care use?

– higher back pain intensity scores

– Agreement with the item, `pain requires ongoing attention from a physician’ consistently predicted `higher’ utilizer
status and higher back pain visit rates

– Belief in the ability to care for back pain on one’s own predicted lower likelihood of frequent back pain visits in both samples

Agreement with the statement that `prescription pain relievers are necessary to control pain when it is really bad,’ and disagreement with the statement, `rarely go to a physician for back pain because they can’t do much for the problem,‘ also predicted higher use of back pain visits in both samples

The authors state: It is worth noting that items involving the concept of physicians `curing’ back pain or finding the `cause’ of back pain did not predict future healthcare utilization.

The use of opioid medications was specifically studied (I’m noticing an increase in the number of people referred for back pain to the PMC taking opioids)

Patients in both samples who agreed with the statement `prescription pain medications are necessary when pain is really bad’ had roughly three times the rate of opioid prescriptions than did patients who disagreed with the statement. Similar results were observed for the item `I avoid prescription medications even when the pain is severe.’

Agreement with the statement, `pain requires ongoing attention from a physician’ was also a strong predictor of
use of opioid medications. Similarly, agreement with the statement `you feel able to care for your back problem on
your own’
was negatively associated with mean number of opioid prescriptions filled in both samples.

Very similar findings were obtained for the use of hypnotic drugs for sleep.

The effect of the four-session self management programme found that at 3 month follow-up, patients who were assigned to the self-care groups were significantly more likely than those randomly assigned to usual care to agree with the statement `things done on my own are more helpful than medical treatments’ (60.2 vs. 46.7%, P , 0:05). At 6 month follow-up, intervention patients were significantly more likely than usual care patients to agree that they felt able to care for pain on their own (69 vs. 51 %, P , 0:01).

The psychoeducational intervention appeared to have no effect on the two medication-specific items.

What can we conclude from this?

It seems clear that pain intensity alone does not predice use of health care – in fact, it’s much more about the attitudes and beliefs that individuals have toward their back pain, and the value they place on medication and medical care that influence health care seeking.

Interestingly, it’s not apparent from this study, that people who sought medical care were looking for either a cure or a cause – they simply wanted less pain and thought that medication was more effective than their own efforts.  What’s scary is that opioids are not often the best medication for low back pain, especially in relatively young people.

What’s even more scary is this finding: While our results indicate that multiple physician visits for back pain are atypical (Pain Register Baseline patients had an average of 1.9 back pain visits over a 2-year period), 10% of this patient sample had five or more physician visits for back pain over this same interval. And, patients with more visits expressed attitudes less favorable toward self-care for back pain management.

There are several limitations to this study – the data used for health care use was drawn from automated records and didn’t include work accident events, the population included are generally well-educated, and the study looked only at patient attitudes and didn’t include health care provider attitudes – several recent studies suggest that provider attitudes are just as likely to influence patient behaviour as patient’s attitudes.

Food for thought however.  It would be interesting to see whether these same questions used in general practice, primary physiotherapy practice, or even as part of ACC here in New Zealand, could improve our management of the people we see returning for yet more medical input.

Why worry about it?  Cost alone: but more importantly, there doesn’t seem to be much evidence that using opioids improves function, and the ‘innoculation’ effect against self management seen here in people seeking more medical input suggests that self management may be difficult to initiate in this group, yet this is the approach given to people only after they’ve failed to respond to medical care.  Hmmm, maybe we have the mix back to front?

Saunders KW, Von Korff M, Pruitt SD, & Moore JE (1999). Prediction of physician visits and prescription medicine use for back pain. Pain, 83 (2), 369-77 PMID: 10534610