Do you trust me?


Trust – something that needs to be earned, or something that is present at first… and then erodes? Or perhaps, it’s a snap judgement we make on the fly – and judge everything else about a person on that basis?

Firstly, why even discuss trustworthiness in pain rehabilitation? Well, the answer is quite clear: I don’t know how many times I’ve been asked if I can tell whether someone is faking their pain. I’ve read numerous articles on functional capacity testing – and its poor predictive validity (or completely absent investigation of such properties). I’ve had case managers tell me they have a method for testing whether someone is faking or malingering… so trustworthiness is something those in the insurance industry seem to want to test. The same kinds of questions are made by employers: how can I tell whether this person is really that bad?

When we don’t believe someone, or we think they’re exaggerating, our level of empathy for that person drops, and our tendency to question their honesty increases (Ashton-James & Nicholas, 2016; Schafer, Prkachin, Kaseweter & Williams, 2016). As a result, people who don’t fit our preconceived ideas of who should or shouldn’t deserve empathy are stigmatised (De Ruddere & Craig, 2016; Stensland & Sanders, 2018). Stigma means people may not receive adequate analegsia (Wilbers, 2015), they may present as stoic and prefer not to reveal how they are feeling (Cagle & Bunting, 2017), and this in turn may lead to further lack of acceptance of that person’s own experience.

So, how is trustworthiness formed? Swenson, Weinstein, Junghaenel and Richeimer (2019) carried out an online study of pain narratives, ie depictions of pain from the perspectives of people seeking treatment. They had 727 participants in this study, 86% (n=626) individuals with chronic pain, and 14% (n=101) having a ‘medical’ background (we don’t know whether medical = health-training). The narratives were based on actual narratives from people living with pain who had responded to the Institute of Medicine (US) call for descriptions related to obtaining care for pain. They identified three narrative characteristics: apparent pain severity, apparent frustration with care, and apparent wish for more or better pain medication. They hypothesised that those describing high levels of pain, frustration with care or a wish for more or better pain medication would be associated with lower ratings of trustworthiness, while people living with pain would give higher ratings of trustworthiness compared with medical professionals.

Participants were asked to rate each vignette on the following characteristics: depressed mood, histrionicity, stoicism, appreciativeness, hostility, and likability. Participants were also asked to assess trustworthiness using the Physician Trust in the Patient Scale (Moskowitz, Thom, Guzman, Penko, Miaskowski & Kushel, 2011).

The results? “Narratives that were rated as depressed, hostile, or histrionic were rated as significantly less trustworthy by study participants (rs=−0.25, −0.44, and−0.43, Ps < .001, respectively). In contrast, pain narratives that were rated as appreciative, stoic, or likable showed a significant and positive relationship with ratings of trustworthiness (rs=0.48, 0.36, and 0.58, Ps < .001, respectively). The observed relationships between personality and psychological characteristics and trustworthiness were similar between patient peers and clinicians.” In other words, the more distressed the narrative the less trustworthy they were rated. So much for compassion for people who are so very often not able to get answers for their pain!

“Pain narratives that expressed a low or moderate level of pain severity received significantly higher trust ratings compared to those narratives that expressed a high pain severity level (t (1,585.15)=9.97, P < .001). Similarly, pain narratives that did not express frustration with pain care received significantly higher trust ratings compared to those narratives that expressed frustration with pain care (t(1,2894.02)=2.59, P=.009).” So, grateful patients are trustworthy, as are people rating their pain as low or moderate. Finally, “when no frustration with pain care was expressed in the narrative, patient peers and clinicians gave similar ratings of trustworthiness, whereas clinicians gave lower trustworthiness ratings than patient peers when frustration with pain care was expressed in the narrative (F(1,2857.31)=7.16, P=.008).” Clinicians clearly think patients should be grateful and satisfied with their care.

Now, I can hear clinicians reading this saying “Oh but not me!” “I would never…” – yet implicit biases exist in healthcare (FitzGerald & Hurst, 2017). Implicit biases are those we have without being aware of them (Holroyd, Scaife & Stafford, 2017). This makes it really difficult to decide whether we ought to take them into account and attempt to correct them, or whether it is just something to put up with. Philosophers Holroyd, Scaife and Stafford tackle this in their paper Responsibility for implicit bias. They break the question of responsibility down to three: Does the attitude reflect badly (or well) on the agent [person], is there a fault (or credit) that can be attributed? Should the agent [person] be regarded as blameworthy for the fault she has or has demonstrated, should she bear some cost or burden (in the form of sanction or blame) for this? And finally, What forward-looking obligations do individuals have for dealing with the fault or problematic behaviour?

Arguments for and against the first question suggest that because the person isn’t aware of their bias, he or she can’t really be held to account for what they do as a result of this. However, once that bias is drawn to the person’s attention, while he or she might still not be able to alter their tendency towards being biased, there is a responsibility to recognise the unfair situation that has arisen, and do something to correct it. Now, Holroyd, Scaife and Stafford’s paper is complex, lengthy and philosophical (tautology perhaps?!), and I’ve cut to the chase – but here’s the thing: we are aware that the way we perceive a person is judged within the first few seconds of meeting them. We’re also aware that we like people who are more like us than different from us. We think people should be grateful for our help, and that they should present as calm and pleasant when they seek it.

YET – many people who live with persistent pain have spent years trying to find appropriate help for their problem. They’re often frustrated, depressed, angry perhaps, and distressed. If we recognise that the people presenting in this way are often stigmatised and judged by others as less trustworthy, I think we ought to (because we know about it) take special steps to counter our tendency to be biased. Some practical things we could do:

  1. Listen for commonalities between the person and ourselves
  2. Recall people who are exceptions – perhaps those who present as distressed and who pull through and develop confidence in their ability to manage
  3. Listen for the unique features of this person’s narrative. Break the stereotype and look for details that make this person special.
  4. Perhaps take the time to ask yourself: what would I be like if I had lived through this person’s life?
  5. Spend some time with people who are experiencing persistent pain. Listen to their stories. Hear their gripes.
  6. Take your time – hurried interactions tend to elicit greater implicit biases.

As we’re emphasising right now in New Zealand, as a result of the terror attack on 15th March 2019, where 50 people died and many were seriously injury, we are one.



Ashton-James, C. E., & Nicholas, M. K. (2016). Appearance of trustworthiness: an implicit source of bias in judgments of patients’ pain. Pain, 157(8), 1583-1585. doi:http://dx.doi.org/10.1097/j.pain.0000000000000595

Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of social work in end-of-life & palliative care, 13(1), 27-43.

De Ruddere, L., & Craig, K. D. (2016). Understanding stigma and chronic pain: a-state-of-the-art review. Pain, 157(8), 1607-1610.

FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: a systematic review. BMC Medical Ethics, 18(1), 19. doi:10.1186/s12910-017-0179-8

Holroyd, J., Scaife, R., & Stafford, T. (2017). Responsibility for implicit bias. Philosophy Compass, 12(3), e12410. doi:10.1111/phc3.12410

Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Relieving Pain in America, A Blueprint for Transforming Prevention, Care, Education, and Research, Washington (DC): National Academies Press (US), 2011.

D. Moskowitz, D.H. Thom, D. Guzman, J. Penko, C. Miaskowski, M. Kushel, Is primary care providers’ trust in socially marginalized patients affected by race, J. Gen. Intern. Med. 26 (8) (2011 Mar 11) 846–851.]

Schafer, G., Prkachin, K. M., Kaseweter, K. A., & Williams, A. C. d. C. (2016). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625.

Stensland, M. L., & Sanders, S. (2018). Not so golden after all: The complexities of chronic low back pain in older adulthood. The Gerontologist, 58(5), 923-931.

Swenson, A. R., Weinstein, F. M., Junghaenel, D. U., & Richeimer, S. H. (2019). Personality and treatment-related correlates of trustworthiness: A web-survey with chronic pain narratives. Journal of Psychosomatic Research, 119, 14-19. doi:https://doi.org/10.1016/j.jpsychores.2019.01.017

Wilbers, L. E. (2015). She has a pain problem, not a pill problem: Chronic pain management, stigma, and the family—An autoethnography. Humanity & Society, 39(1), 86-111.

The next new thing


Each week as I sit to write a blog post, I think about what’s been happening in my world and in the world of pain rehabilitation. It struck me this morning that we’re often a bit like “Ooooh! Shiny!” with new toys and techniques and research to read… yet as so many people point out, the old biopsychosocial (sociopsychobiological) framework doesn’t seem to have seeped down very far, particularly when we look at undergraduate training about pain. It’s like an abstract concept until we meet face-to-face with how poorly our original training sets us up for complexity and messiness.

And clinical work is inherently complex, ambiguous, emergent. We work with incomplete information. We pin our hopes upon asking questions about what we hope the problem is, take histories from people who don’t know what we want to know about, use assessment techniques that are full of measurement error and attempt to derive a pattern amongst the noise so we can give the person a name for what is wrong. And we need this label so we know, the person knows, the funding agency knows – what to do next.

What might our training teach us to do? Under the pressure of cramming an enormous amount of information about normal and abnormal function, our training may teach us to quickly discard uncertainty so we can answer the examiner’s questions promptly. We are possibly led towards a linear, time-constrained interview process where people present as neat problem lists, and where uncomfortable imprecision, particularly with respect to – ewwww! – feelings, thoughts, beliefs, family relationships, mental health, drug and alcohol use, coping strategies – yes all those things inside Pandora’s box – is put aside to focus on the real, physical problem we can do something about.

I think this kind of process sets us up to constantly seek the next new thing. We’d like to know that something will work for people who we know, once we start working in the real world, just don’t conform to our diagnostic boxes. Secretly perhaps we’re hoping there will be some wand or sparkle dust that will turn pumpkins in royal coaches, Cinderella into a beautiful, smart, and endlessly compliant patient who gets better within time frames!

While our training might be, in part, responsible for this tendency to seek simple and shiny and new, perhaps the problem goes deeper than this. Perhaps it’s about who we choose to recruit in training – the straight A students who seem to get along with people reasonably well, and who don’t have “problems”. Perhaps it’s also about our post-graduation training (CPD) opportunities – largely fueled by the need to “show evidence” of ongoing learning – that primarily focus on simple techniques that can be taught in a weekend.

What does working with ambiguity look like? Are there models of treatment in healthcare where being OK with not knowing, perhaps discovering together with the person coming for help, where we can feel safe enough to say “I’m not ready to do anything to you until I’ve got to know you better”, or better still “I’m not ready to work with you until we’ve got to know each other better”.

What would it take to reveal some of yourself in the same way we expect our patients to? And what would that do to our relationship dynamics? And the sense of who has power and who doesn’t? Could we challenge our assumptions about who the expert is?

If we adopted a sociopsychobiological model, we might need to begin by acknowledging the complexity of human relationships. Starting with acknowledging that macro influences on assumptions we take for granted – and recognising the similarities and differences between people. We might prioritise learning about social systems, law, folkways and mores, “in” groups and “out” groups and how they work, and even review our beliefs about socio-economic status and why people might not prioritise their health.

Then we might need to reflect on psychological aspects of ourselves and others. That we have a finite amount of room for processing information so we use heuristics that reduce cognitive demand but also reduce what we pay attention to. That we, too, have emotions and assumptions and beliefs about how good we are as clinicians, and what it’s like for the other person to see us strutting our stuff.

And of course, the biological aspects underpin everything – our skin-covered anti-gravity suits through which we view the world. Still there. Still important, but filtered through the social and psychological.

Would this reduce the temptation to look for the next shiny new thing? I’m not sure – but it might broaden the range of shiny new things we’d look at. Perhaps we might become so fascinated by the sociopsychological that we’d recognise there is far more influence on what people do in these domains than we are currently trained to notice. And maybe we’d be a little less enamoured of the toys so temptingly offered at weekend workshops.

Why focus on pain management (rehabilitation)? Response to comments


My response to comments is that at this time self-efficacy (confidence you can do things despite your pain) is really low. Self-efficacy, like love, isn’t a finite resource though, although the energy required to keep on coping (balancing all the multiple demands that persistent pain has on you) can exceed current capacity. Both self-efficacy and energy are renewable resources and change over time. Love expands as we add to it. Self-efficacy increases as we have more successes. Energy renews as we find ways to fill our buckets up faster than the holes leak it out.

This post was written for health professionals, health professionals who may be inadvertently undermining what little self-efficacy an individual has by promoting a focus on what they do, rather than on what the person is using to deal with their situation. Health professionals who may well be told they must record pain intensity before and after Every. Single. Treatment. Who may not recognise just how much effort it has taken for a person to come in for a session – especially when feeling guilty or ashamed that “homework” hasn’t been achievable.

I think pain heroes do need to be celebrated. All we hear about in the media are people suffering, wanting techno-fixes and ways to get rid of their pain without recognising that for many people pain reduction just is not possible. For those who are able to live well, why not applaud their efforts – I’m not talking about their ability to get rid of their pain, but their ability to remain focused on what gives their life value and meaning – even if that’s a small fraction of what they were able to do prior to developing their pain.

I get that sometimes “pain heroes” who do amazing feats are held up as “normal”, but at the same time that’s not the story played out in most of our general media, I wonder if it’s more like the stories bandied about as examples of the latest new-fangled treatment. I often wonder if there were long-term follow-ups carried out on those folks, would they still be as positive as they were at the time their story was made?

Pain reduction as a goal doesn’t improve confidence to do activities successfully despite pain. Except in as far as a paper cut might not interfere as much with doing life as a migraine. At least some of the confusion arises from misinterpreting the measure: Pain Self Efficacy Questionnaire specifically uses the phrase “despite pain”, but I often hear people describe it as if it was “without pain”. Perhaps there needs to be a different measure “Self Efficacy Questionnaire for Doing Things With Only A Little Pain”, but currently the only measure of pain self efficacy is the one developed by Michael Nicholas.

I think it’s easy to misinterpret research about resilience as if it’s suggesting “thinking yourself out of pain” is the goal. It’s not. And that study in particular doesn’t say that, while neither did mine. In fact, “thinking yourself out of pain” isn’t achievable – good research suggests that attempting to suppress your attention to pain actually rebounds. It’s also not Pollyanna and pretending that pain doesn’t have an impact. What I think it is is a process of coming to grips with the fluctuations we all experience with pain and energy, recognising what we can and can’t do, being unafraid of our pain and knowing that it’s not going to kill us (though we may wish we could die from time to time), and finding small ways to go with our pain rather than fighting against it, wishing it wasn’t present, pretending it doesn’t have an effect when it does, trying to ignore it, or buckling underneath it and losing ourselves.

In the pain management services I’ve worked in, and the approach I take both for myself and with the people I try to work with, using pharmacological, neuromodulatory, surgical and procedural approaches to reduce pain has always been integral to the overall plan. Sadly I have not found anything that provides any pain reduction for me, I have no option but to keep going without anything. If there are things that reduce pain – and the side effects, adverse effects, or interference with the way you want to live your life are acceptable – that’s fantastic! The distinction I made in my post is the focus on pain reduction as the primary outcome. The sense that life cannot go on without pain reduction.  The thing is, life does go on whether we’re part of it, or not (and of course we can choose not to go on, but that’s death, and not an option I’d ever recommend). So, one foot after another, life does go on. I’m arguing for more than a focus on pain reduction. Because that seriously is the only outcome considered by some professionals – and some people with pain. And in pursuing only pain reduction, people lose sight of what already is going on around them. Life goes on hold, and people spend all their energy, time, and focus on how to get rid of pain. That is not living.

Wouldn’t it be great if we had something for those who find their pain overwhelms them. Sadly after working in this field for 30 years I do not think we are any closer to that elusive goal than we were when I began, except perhaps people aren’t going through quite so many useless and invasive surgeries with really nasty side effects as they did in the 1980’s. Do you not think there are so many people already seeking new and innovative treatments? And what would you like to have happen to those who may never see any of those new treatments reach them? It does not have to be an either-or situation.

What I’m finding is there is so much emphasis on pain reduction that few people are willing to provide what is already known to help people’s distress and disability. The unsexy, somewhat boring-but-necessary evils of self-regulation, reframing pain, setting teeny tiny goals, maintaining consistency, activity management, day in and day out exercise programmes, plodding through each small bump along the way. That is the reality for the many, many people who have, like you, not found anything wonderful to whisk the pain away. Demanding better treatments may not bear fruit in your life time. The only new class of analgesics are the triptans for migraine, and they were first discussed in the 1960’s, and only released onto the market in the 1990’s. Do you think there’s something hidden away for only “good” people? Seriously, there is SO much research being undertaken for all manner of wonderful treatments – but I haven’t seen much of this bear fruit in the way that you and all the other people who live with persistent pain would really like. Including me.

So, let me say, in case it wasn’t clear.

I am NOT suggesting there should be no medical interventions for people.

I AM cautious in terms of how successful they are (that’s me, the skeptic, been doing this for long enough to see the trendy things fail in the real world).

I AM suggesting it’s not worth putting life on hold in the hope that there MAY be something “just around the corner” because that’s not the case right now.

I AM arguing that clinicians who focus on pain intensity as the exclusive outcome that matters need to stop and think about what it is that people want to DO with that newfound energy if their pain did suddenly disappear.

Sometimes, in fact often, those things can be done with pain alongside. So it hasn’t happened in many people’s cases – that’s because pretty much nothing DOES work for everyone. But that doesn’t mean we should stop working really hard to continue to help people do what they can do, not letting what they can’t do get in the way of what they can.

And that is what I try to do both personally and professionally, as a person, clinician and educator.

Always look on the bright side of life!


Anyone who is older than, say, 40 years old, should be whistling right now…

For some time now I’ve been interested in how people who cope well with pain go about their daily lives. What makes this group of people different from the ones we more often see? While I know from my own research that there’s a process to get to where living life outweighs putting all the emphasis on finding a cure (note: this doesn’t mean giving up on a cure, it just means it’s a different priority), there is some research showing that how we view a situation (either as a challenge – or not) plays a role in how well we deal with it (Lazarus & Folkman, 1984).

The theory goes something like this: resilience people view pain as a challenge and believe that they have the resources to cope with it, and as a result they experience less disability and distress.

There has been a reasonable interest in resilience in coping with persistent pain since Karoly and Ruehlman (2006) found that a small but reasonable-sized group of people report moderate to severe levels of pain intensity, but don’t report high levels of interference or emotional burden. It’s thought that instead of avoiding movements or activities that are painful, this group of people may feel fear – but go on to “confront” or at least willingly experience pain as part of their recovery. What hasn’t been as well-understood is whether resilience is associated with perceiving pain as a challenge, and therefore people are more likely to do things that may hurt, or whether people believe they can face the demands of experiencing pain (ie they have self efficacy for managing pain) and this is the path by which they get on with life.

This study was carried out in mainland China, and is for this reason alone, is an interesting study (most of our understanding about pain comes from the US, Canada, Australia and the UK). China also faces an enormous burden from people being disabled by chronic pain, so this is a good step forward to understanding what might support living well with pain in this highly populated country.

The study is by Shuanghong Chen and Todd Jackson, and published last year in the journal Rehabilitation Psychology. The authors recruited 307 Chinese adults with chronic back pain (189 women, 118 men), and asked them to complete a batch of questionnaires: Connor-Davidson Resilience Scale (Chinese); Pain Appraisal Inventory (Short-form) Challenge; Pain Self-Efficacy Questionnaire; The catastrophising subscale of the Coping Strategies Questionnaire, the Chronic Pain Grade; The Multidimensional Pain Inventory-Screening (Affective Distress) subscale; and the Center for Epidemiologic Studies Depression Scale. Participants were recruited from large residential settings close to the university and two local hospitals, and participants needed to be at least 18 years old with back pain of at least 3 months duration. All the questionnaires were translated into Mandarin using back-translation. This was a cross-sectional design, so all the measures were taken at one time, and analysis performed across the group. It’s not possible, therefore, to determine causal relations, and all the calculations were carried out using structural equation modeling, therefore correlational relationships only.

What did they find out?

High resilience levels were related to elevations in primary appraisals of pain as a challenge, and in turn, higher resilience and challenge appraisal scores were each related to higher scores on the secondary appraisal measure of pain self-efficacy beliefs. Those with high scores on resilience and pain self-efficacy tended to score lower on the secondary appraisal measure of pain catastrophising. When analysing the path it was found that challenge appraisals didn’t reach significance with catastrophising or pain-related disability (such as scores on Chronic Pain Grade, Affective Distress, or Depression). Higher scores on resilience and pain self-efficacy as well as reductions in pain catastrophising were associated with lower overall dysfunction scores (Chronic Pain Grade, Affective Distress, and Depression).

Interestingly, the authors tested to see whether pain self-efficacy and pain catastrophising had a bidirectional relationship with one another – they found that yes, this did have a good fit with the data but the resilience-catastrophising path was strong than the path in the original model, while the bidirectional self-efficacy-catastrophising path was slightly less strongly associated compare with the other model.

What does all this mean for us?

Well it seems that while we attend to negative features of a person’s presentation, from this study it looks like the relationship between positive aspects (such as not thinking of pain as an incredibly negative thing (catastrophising) and believing that yes I do have resources sufficient to cope with pain) is more predictive of outcomes than simply looking at catastrophising alone. However – pain self-efficacy and pain catastrophising and poorer coping have been found significant, while general resilience (appraising pain itself as a challenge, or not) and appraising pain itself as a challenge is less strongly associated. What this suggests is that increasing a person’s beliefs that they have the capability to cope (ie self-efficacy) despite pain needs to be a priority in pain rehabilitation.

To me this is an important finding. When we as therapists attribute change in function to either less pain, or to our efforts (or the treatments, eg injections, pills, special exercises, super-duper techniques that we use), we fail to foster or support self-efficacy. Self-efficacy is a slippery concept: the measure indicates confidence to engage in activities despite pain. If our treatments focus on reducing pain intensity and don’t support the person being able to do things despite their pain, we’re likely not helping them become more confident, especially in the future.

This doesn’t mean we should tell people to “suck it up, Buttercup”. It does mean we should help people identify the strategies they have (or can develop) to be able to continue with activity in the face of pain fluctuations. Of course this means we need to be comfortable with the idea that it’s OK to do things despite pain! If we still hold a sneaky suspicion that it’s not OK to be sore and do things, we’re likely to inadvertently (or perhaps overtly) encourage people to ease up, back off, or generally stop when they’re sore. Asking people how sore they are at each treatment is likely not to increase confidence that it’s OK to move. Commiserating over how painful it is and how tough it is may be unhelpful!

What can we do instead?

I think we can draw a lot from motivational interviewing. No, not the stages of change, but the part where we acknowledge that despite it being difficult, the person did something that moved them towards a more positive choice. What this might look like is “Hey you had a tough week, but it’s fantastic that you made it here today so we can look at what you carried on with”. It might include “While it’s been a flare-up week for you, you were still aware of your goals and had a go”. Or “Look at how you stayed the course despite the bumps in the road”.

Sticking with the idea that actions, or habits count more than results can be useful, because we’re helping people build long-term lifestyle changes that will sustain them over time. Yes, results are really cool and we want to see them (so don’t stop recording wins!), but at the same time, it’s vital we celebrate the daily choices a person makes to keep going and doing.

I think we can also help build self-efficacy by drawing on pain heroes. People who have maintained a good lifestyle despite their pain. Celebrating those who are grinding through, even though they have tough times. Perhaps other people in the clinic who are also managing pain. From self-efficacy research we know that vicarious learning (watching how others perform in the same situation) is one of the ways we boost our confidence to succeed. Group-work may be a useful approach for encouraging people to know they’re not alone, they can make progress, and that they’re doing OK.

So…. looking on the bright side of life doesn’t mean ignoring challenges, but it does mean viewing them as challenges rather than insurmountable obstacles. Our approach to pain – is it something to get rid of, or is it something to learn from and something we can manage – may give people encouragement to persist, or it may undermine coping. What’s your view?


Chen, S., & Jackson, T. (2018). Pain Beliefs Mediate Relations Between General Resilience and Dysfunction From Chronic Back Pain. Rehabilitation Psychology, 63(4), 604–611.

Karoly, P., & Ruehlman, L. S. (2006). Psychological “resilience” and its correlates in chronic pain: Findings from a national community sample. Pain, 123, 90–97. http://dx.doi.org/10.1016/j.pain.2006.02.014

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.

Knowledge translation: A home for occupational therapy?


Modern occupational therapy is involved with helping people participate in daily life in the real world. Indeed, occupational therapy has always been about “doing” – see here for a brief history of occupational therapy – but it has been difficult, in a strongly reductionist and biomedical context, to articulate the unique and particular contribution occupational therapy makes within healthcare.

In a conversation last week with Dr Mary Butler from Otago Polytechnic, we were discussing our areas of research. I mentioned that knowledge translation, or helping clinicians use research that is often locked up in peer-reviewed journals, is my passion. Something clicked and we both recognised that the process of translating from one “artificial” setting to the real world is where both of us feel completely at home. As our conversation rambled (we know how to talk!), we described the way we go about contributing to research and clinical practice: looking from the evidence-based material or research in daily life, to where this knowledge needs to be applied. Our passion is understanding the where/how/why/what that gets in the way of bringing evidence to the lived experience, whether that be researching how an older person with poor vision might avoid falls (change the lightbulbs for brighter ones – it can help!), or working out a clinical reasoning model to help therapists think broadly about pain and factors influencing disability.

Knowledge translation is an area of research and practice that bridges the gap between journal articles and implementation. It involves identifying needs in the real world (read: practice area), identifying or developing research to solve those problems, making the solutions (research) accessible, then adopting and modifying that information as it’s implemented so that it does what it needs to do.

For occupational therapists, this is work as usual. We work with the person to identify their needs: what does this person want and need to do in daily life? We then scour our knowledge bases, often assessing the person’s capabilities, understanding the context and environment, research the constraints on the person’s participation and establish the obstacles that prevent this person from participating in what they want and need to do. We then tailor the solutions to fit the unique demands of the person, the task (or occupation) and the contexts, and help the person implement the solution so they can participate.

And this is why it’s so difficult to answer that seemingly simple question: What can you offer people? Why should I refer to you? What do you do? Because my answer will almost always be “it depends …!”

Working in pain management as I do, I draw on pain research across basic science, biology, biomechanics, physiology, sociology, anthropology, psychology in many different fields. I also need to know about pharmacology, kinesiology, strength and fitness research, and yes I even have to read about surgery, physiotherapy, nursing, post-operative recovery. Because the people I work with have relationships with others, I need to understand relationship dynamics, employer/employee relations, collegial relations at work, friendships, mateships and both introversion and extraversion. I could go on – but the point is not just how many fields I need to be conversant with, it’s that the way I use this knowledge is unique to occupational therapy. Let me elaborate.

All those fields of knowledge are relevant to my work, but the area that is utterly unique to occupational therapy is understanding the interaction between this person and his/her many different participation contexts. This means that I might be working on graded exposure to the fear of bending forward. A physiotherapist may have been working on this in a gym or fitness context – but this environment is controlled, there is a therapist hovering near, the loads and positions and floor surface and lighting and number of people around and noise level is all controlled and fairly consistent. As an occupational therapist, my job is to help this person generalise the fear reduction experienced in the gym to every day life. That means loading things into the boot of the car, or over the back seat of the car, or the laundry basket, or picking up the clothes off the floordrobe in the teens bedroom, or picking up the dog pooh from the back yard, or bending to weed the garden, or bending to put the shoes and socks on, or clean the bottom of the bath or shower. I have to help the person identify where they need to bend over, and grade the demands to a level that the person can only just manage – so he or she can push towards increasing confidence in any situation.

Translating from one context to another doesn’t always happen by itself. I’m sure there are many times we’ve seen someone walking beautifully, using the painful foot with a completely correct heel-toe pattern in the clinic – then perhaps unexpectedly meeting the person in the shopping mall on a wet day when the floor is slippery only to find he or she is leaning on the shopping trolley, limping and hardly putting any weight on the foot at all.

Knowing about a strategy doesn’t mean it’s used in the real context in which it’s needed. A mindfulness meditation carried out in clinic, where it’s quiet and there are no distractions, and no children saying “what’s for dinner!” and no partner coming home after a busy day wanting to decompress by talking… is a very different experience carried out at home! And this complexity is the practice space for occupational therapists. It looks like “doing meditation” and “oh but we’ve done that in one session” – but it’s a complex balancing of priorities, establishing boundaries, caring sufficiently for oneself over others, being willing to bring the mind back repeatedly as salient thoughts and sounds intrude.

I think that many clinicians assume that what is done in treatment has carryover into daily life. I would argue that this gap between knowing and doing, discussed so much in knowledge translation about research and clinical practice, is precisely what is missing in much of our pain rehabilitation. We may not even recognise that the person hasn’t integrated the skills we’ve been focusing on: why? Because we don’t enter the person’s everyday life.

Some of the things occupational therapists focus on so much include meaning and values, the social context, the physical environment, the cognitive and sensory environment – and at times, we can forget that we draw on foundation science in our treatment approach, so we hand out long-handled reachers for picking the clothes up from the floordrobe, forgetting that it’s possible for people to learn how to bend over without fear… and that’s a conversation for occupational therapists to have. I hope that by starting to recognise our “knowledge translation” space, we might gain more confidence to read research well outside “occupational” areas, and begin to consider how we can apply what other disciplines study to the everyday lives of the people we help.


The “onion ring” model of pain


Clinicians constantly search for a better way to describe the tangled mess that constitutes ways to explore pain. Today I’m hoping to add another way, but hopefully one that might help disentangle certain aspects of pain for ease of learning. And as usual, it’s largely not my own model, but one first developed by Professor John Loeser, eminent neurologist and neurosurgeon and Director of the Multidisciplinary Pain Center from 1982-1997 at the University of Washington.

There are many different versions of the ‘Onion ring’ model – Gordon Waddell, orthopaedic surgeon and contemporary of Loeser also developed one, and more recently we’ve seen a version from Lorimer Moseley and colleagues in NOI publications. I’m going back to Loeser’s one because I think it’s useful – and in the case of conceptual models like this utility is the measure by which we decide to adopt a model or not. You be the judge. This is my public announcement that this is not intended to be a scientific model for generating and testing hypotheses: it’s meant to be an explanatory metaphor, if you like.

OK, so what is this model?

Like any onion, the model has inner to outer layers, but unlike an onion, these layers are permeable, and slightly fuzzy. They interact with one another, and the resultant whole is intended to reflect the experience of pain, along with the aspects that you and I might see – and includes various factors thought to influence the experience. It’s incomplete because much of what is known about pain is incomplete. It can’t explain everything, because no metaphor can – but it does provide some hooks for our minds to grab onto when we’re accessing new information and we want to establish relevance and recognition.

Loeser’s Onion Ring Model (1983)

The purple ring in the centre is all about neurobiology for me. Loeser’s original model labeled this “nociception”, but since 1983 we’ve learned a great deal more about the neurobiology of pain and we know that pain in the absence of nociception is probably a product of something gone awry in the way our nociceptive system is interpreting information. It could be neuropathic pain (where there is an identifiable lesion of the somatosensory system), or it might be nociplastic pain ( “pain that arises from altered nociception despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors or evidence for disease or lesion of the somatosensory system causing the pain.” – click). At this level of the model this is not pain. This inner ring refers only to biological processes prior to conscious awareness.

The next ring (dark blue) refers to the conscious experience we have of pain. This is the part we personally experience – it’s subjective, unpleasant, sensory and emotional, and we learn to associate this experience with potential or actual tissue damage, or we describe it in similar ways. In many respects this is the quale – the quality of what-it-is-like to experience pain – although others would argue it is an aporia (In philosophy, Aporia means literally ‘impasse, difficulty in passage, lack of resources, puzzlement’). However we like to define it, this part of Loeser’s model refers to the experience once our brain/mind has deemed it relevant to our predicament.

But, as the saying goes, wait! There’s more!

Because this dark blue ring is experiential, we can’t share it, or even know about another’s experience unless we do something about it, and before we do something about it, we appraise or judge it. With some provisos (told you this was a metaphor not a testable model!).

Drawing from cognitive models, Loeser then wraps another ring around the experience “pain” – this is what he described as suffering, but I prefer to describe as “judgement” or “appraisal”. Suffering is a judgement that this experience is threatening our essential self, our future (Cassel, 1999). So while there are certain behaviours that occur prior to awareness or judgement (see this) as soon as we are consciously aware of pain we’re judging that experience. And probably, because brains don’t just sit there waiting for information to come towards it, there is a good deal of permeability between the neurobiology ring, the pain-experience ring, and this ring. But for simplicity’s sake, let’s take it that when we experience “ouch” we typically check it out and interpret the meaning of that ouch in context of where we are, what we’re currently doing, who we’re with, and our past experiences. This interpretation or judgement phase can augment the meaning of pain to increase its threat value, or vice versa (OMG that was a snake bite! or Oh that was a bruise I didn’t need).

Wrapping around that “judgement” ring is a further ring – and this is possibly the one we most need to come to grips with. This ring is the behavioural response to our appraised experience. Pain behaviour or what we do when we recognise and judge our experience of pain is complex. It’s complex because all human behaviour is complex. It’s also complicated because we naively judge one another on the basis of what we see – and our own assumptions about what that behaviour might mean.

Behaviours include nocifensive responses, but don’t stop there. As we develop and mature from babyhood to adulthood, we embroider and alter our behavioural response to pain, just as we do with our appraisals. As babies we’re likely to scream our lungs out at the heel prick test at birth. I hope we don’t do that when we get a flu jab (and I truly hope you DO get a flu jab, and if you’re in Christchurch New Zealand that you get a measles immunisation pronto). We learn what to do from watching others (social learning), from others responses to us (operant conditioning), and from events that occur at the same time as our pain occurs (classical conditioning). Social learning is powerful – within different cultural groups, peer groups and family groups, we learn what is normal and OK to do when we’re sore. We also get rewarded (or not) for the way we behave. Little kids get told “stop that crying, it’s nothing” when they stub a toe, or they might get cuddled instead. Footballers get extra time if they roll around on the ground with an injury during a match; rugby players get adulation when they carry on playing despite a rib fracture or two. And for some people, associating a movement with pain can lead to longstanding limitations and avoiding that same movement in case it brings the pain on.

Pain behaviours include language and even that old “pain rating scale”. We use language and nonverbal behaviour to communicate. So when someone says “my pain is 12/10” what they’re really saying is “this is more than I can bear, help me”. We do not have a pure measure of how intense a pain is – and any measure of intensity is likely filtered through a process of judgement “what does this mean for me?” and communication “what will happen if I say X number?” So stop judging someone if they say their pain is 12/10 – it means they’re freaking out, and need comfort.

If you’re smart you’ll notice that I’ve sneakily been discussing the final onion ring, and to be fair, Loeser didn’t include this in his version – it’s one that Waddell, Main, and others have added and I think it’s integral to understanding what’s going on so I’ve added it too. The outer ring refers to the social context because this influences what people do (pain behaviours) as I’ve just outlined. It also includes social factors such as the workplace and compensation, legislation covering what is and isn’t covered in insurance plans, our community attitudes towards people who are experiencing pain, stigma and social isolation and sense of online community and such.

Loeser’s onion ring provides me with some nice ways to separate parts of my understanding of pain so I can explain how and why we need to examine them and influence them separately. Health professionals are always and inevitably influencing the judgement, behaviour, and social aspects of pain. Sometimes we get to influence the neurobiology and through interactions between all these layers, sometimes the experience of pain is reduced. Other times it is not. At the same time, if we can begin to shift the judgements and what we do about pain and yes, the social contexts in which experiencing weird unexplained pain is viewed as a moral failing or attempt to “get secondary gain”, maybe then we can help people live better lives despite their pain.

Cassell, E. J. (1999). Diagnosing Suffering: A Perspective. Annals of Internal Medicine, 131(7), 531-534. doi:10.7326/0003-4819-131-7-199910050-00009

Loeser JD, Ford WE. Chronic Pain. In: Carr JE, Dengerink HA, (eds). Behavioral Science in the Practice of Medicine. New York: Elsevier Biomedical:1983:331-345

Why reducing pain intensity doesn’t always mean a better outcome


There have recently been some studies published on meta-analyses of “pain education”. I’ve made my stance clear on what I think of “pain education” particularly as a stand-alone intervention here and here and why I think we need to look beyond pain intensity reduction as The Outcome of Choice. In this brief post I want to look at some of the variables that influence both pain behaviour and pain intensity.

We all know that pain is subjective: this means it can’t be directly shared with anyone, and no-one is able to determine just how sore any other person is (that includes people who believe they can spot faking or malingering. Stop it! You can’t, not for pain). What this also means, though, is that for us as clinicians to understand what it is like for another person to be experiencing pain, we must infer on the basis of what they do (ie behaviours).

Mostly with adults, we infer the severity of pain on the basis of the dreaded visual analogue scale or the numeric rating scale – “what is your pain on a 0 – 10 scale where 0 = no pain at all and 10 = most extreme pain you can imagine.” In people who either don’t speak our language, or who can’t respond with words, we rely on inferences drawn from their “body language” or nonverbal behaviour.

Many pain behaviours begin as useful evolutionary responses to threat: physiological arousal, reflex withdrawal, verbal groans and gasps. These serve to help us withdraw from the stimulus, help us escape the threat (or freeze or fight it), and signals that we need help (and avoid this threat) because we’re social animals. At the same time, behaviours are subject to behavioural reinforcement as well as cognitive biases, memories and so on. An example: If someone goes to the Emergency Department and reports their pain is 3/10, they’re unlikely to receive heavy-duty analgesia. You can bet that if they attend ED on another occasion, they’ll remember this and report their pain to be a little higher. Now often this isn’t a conscious decision, it’s something we learn over time and throughout our lives, so we may be oblivious to how we alter our verbal and nonverbal behaviour as a response to events in the environment and our own interpretations of what’s going on.

Pain is also rarely a static, consistent experience. Pain typically varies over the course of time. It can be episodic and pulsing and rhythmic, or it may come in waves, it might fluctuate unpredictably: in part this variability is a product of the stimulus, but also physiological processes such as habituation, attentional demands can mean we’re more or less “tuned in” to being aware of pain, and our emotional state is also part of the picture.

Finally (or not, depending on my whim!), our response to pain depends on our interpretation of its meaning and significance. When we’re tired and feeling down, and the pain seems mysterious and very threatening because we have things to do and no-one can tell us what the diagnosis is we’re more likely to increase our awareness and our behaviour associated with that experience. Maybe we’ll report it as 9/10 because it seems to intrude on life, the universe and our very existence as we know it. Maybe we’ll be really afraid and don’t think we can cope with it even though we usually do, so we’ll report it as 12/10. Maybe we’re not experiencing pain right now but we think that if we do something wrong we’ll get the pain back (think of angina here), so we just don’t do things “in case”. And maybe we’ve been told not to do things because it might be harmful, so we don’t do those things, our pain is around its usual level but we feel constrained and report it as 7/10 because we’re fed up with it all.

We know that part of the challenge of pain is that it’s incompletely understood (I use the word “it” as a placeholder for the rather more wordy “our experience of pain”). We do have pretty good means of reducing pain, but the problem is that these leave us incapable of doing very much because the most effective approach is simply to lose consciousness. But life doesn’t permit us to do that for long without adverse consequences! And for many people, even the best analgesia is only likely to reduce pain by about 30%, if at all.

When someone has learned to reinterpret their pain as not terribly threatening, still annoying and frustrating and demoralising, but not indicating that the body/self is about to come to serious harm, it’s possible to look well but feel awful inside. In other words, the pain intensity and quality doesn’t change an awful lot, but because it’s no longer associated with existential threat to self, it’s possible to put on makeup, groom well, interact happily, and look “normal”. How do I know this? Well – that’s what I do every day.

So using pain intensity as a guide to how well a person has recovered or adjusted to their pain is not an especially reliable guide as to how much pain is bothering them. The relationship between pain intensity and what we can and cannot do is uncertain and complex. And behaviour change is not easy. Doing things differently involves a whole cascade of changes that need to be implemented, not the least of which is learning how to regulate physiological arousal, reconceptualising the pain experience as something that can be lived with, redirecting attention towards things that matter to us, developing motor control and strength when this has changed – but possibly the most complex and ignored involves responding to, or altering our response to other people’s behaviours.

This means navigating other’s expectations from us (some people are afraid that when a person begins doing things again they’re going to make their pain worse and fail, others are expecting return to “normal” without factoring in that pain IS a significant challenge to deal with), and their behavioural responses to what we do. Many of the people I work with who live with pain talk about losing friendships, not being able to keep up with others, being misunderstood, being ignored or punished with angry reactions because they’re not the same person they were before their encounter with weird prolonged pain. And these are only the responses at an individual and small group level! What about the perverse disincentives to return to usual activities, like losing compensation prematurely, or having to return to a job that is not the job you left and you feel unprepared for or overskilled and unappreciated? Legislation that is written for “normal” recovery from illness or injury but doesn’t include persistent pain. Processes that mean you have to prove disability repeatedly just to retain access to services or income.

So, even if clinicians find that their treatment reduces pain, it may not lead to the outcomes clinicians want to see: a happy, active and engaged person. Sometimes it can lead to ongoing life restrictions (think angina again). Sometimes it can lead to erratic activity patterns. Sometimes those other factors influence how the person goes about life and not in a good way.

Echoing something written repeatedly over the decades in pain research literature, I want to quote from Ballantyne and Sullivan (2015). This article challenges clinicians to rethink pain reduction as the primary outcome measure for persistent pain in the face of increasing opioid use (now reducing but often without subtlety or support) because of the very issues I’ve outlined above. They state the following:

Suffering may be related as much to the meaning of pain as to its intensity. Persistent helplessness and hopelessness may be the root causes of suffering for patients with chronic pain yet be reflected in a report of high pain intensity.

And conclude their article with this:

When pain is chronic, its intensity isn’t a simple measure of something that can be easily fixed. Multiple measures of the complex causes and consequences of pain are needed to elucidate a person’s pain and inform multimodal treatment. But no quantitative summary of these measures will adequately capture the burden or the meaning of chronic pain for a particular patient. For this purpose, nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient’s experiences and offer empathy, encouragement, mentorship, and hope.

Emphasis is entirely mine. And heartfelt.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of chronic pain—the wrong metric? New England Journal of Medicine, 373(22), 2098-2099.

San Diego Pain Summit – only a few days to go, but you’re not too late!


Live Stream package details: Watch the conference on Feb. 23-24 in real time. Note that the conference occurs in Pacific Standard Time. Participate in Q&A and prize drawings.

Package includes 1 year membership to Pain Summit Online, beg. March 1, 2019. Membership includes access to all presentations from 2015 to present. The 2019 presentations will be uploaded sometime in the first few weeks of March.

Live Stream video contains a lag, so you can rewind hours later to watch something you missed.

Approved by the California Physical Therapy Association for 1.15 CEUs or 11.5 hours.

Link to register: https://sandiegopainscience.com/registration-2019/live-stream

Registration closes at 11pm PST on Feb. 22

Discount code for 25% off at checkout: T9SQZGM

Reconciling uncertainty and the drive to diagnose


Recently it was suggested to me that even though I’m an occupational therapist, I might “diagnose”. Not so much diagnose disease, but “determine if a patient is depressed, anxious, catastrophising, fear avoidant etc?” The author goes on to say “isn’t that diagnosis too?” The comment was made in the context of a lengthy Twitter discussion about so-called “non-specific” low back pain. Over the course of I think about five weeks now, a large number of highly educated, erudite and passionate clinicians have argued the toss about whether it’s possible to identify the “cause” of nonspecific low back pain. On the odd occasion I’ve put my oar in to mention psychosocial aspects and that people seek help for many reasons, one of which may be pain intensity, but mostly people ask for help because either the pain is interfering with being able to do things, or because the person interprets their pain as an indication, perhaps, of something nasty.

I mention this context, because over the many tweets, I was struck by the degree of certainty demanded by various commentators on both sides of the discussion. “Where’s the gold standard?”; “What’s the evidence”; “Yes”; “No” – and in many respects, diagnosis is a practice based on degrees of certainty. You either have a disease – or you don’t. You have the signs and symptoms – or you don’t. Unless, of course, it’s the creeping edge of “pre-diagnosis” like my “pre-diabetes”.

In October I wrote about clinical enquiry, which is described by Engebretsen and colleagues (2015) as a complicated process (sure is!) of 4 overlapping, intertwined phases: (a) data collection – of self reported sensations, observations, otherwise known as “something is wrong and needs explaining”; (b) data interpreting “what might this mean?” by synthesising the data and working to recognise possible answers, or understanding; (c) weighing up alternative interpretations by judging; and (d) deciding what to do next, “what is the right thing to do”, or deliberation.

For, irrespective of our certainty about the precision of any particular test or ultimately a diagnosis, all of our work involves two people who must collaborate to follow the process outlined by Engebretsen and colleagues. That is, the person seeking help notices “something is wrong and needs explaining”, he or she communicates selected information to a knowledgeable person (a clinician) and that clinician will typically seek more information, and assemble this in some way (synthesise). In my case I like to do this assemblage in collaboration with the person so we can weigh up or judge various interpretations of that data. I bring some knowledge from my training and ongoing learning, while the person brings his or her intimate knowledge of what it is like to be experiencing that “something is wrong.” There are times when we are both in the dark and we need to collect some more information: for while the person knows what it is like to be in this predicament, there are likely factors not yet incorporated (or noticed) into the picture. For example, guided discovery or Socratic questioning usually involves exploring something the person is aware of but hadn’t considered relevant, or hadn’t joined the dots. I don’t think it takes rocket science to see just how messy and complex this communication and information synthesising process can be – it only takes a person to fail to provide a piece of information (because they don’t think it’s relevant) for the analysis to go awry.

I like the depiction of the diagnostic process described in Britannica.com because throughout the process, the diagnosis is held lightly. It’s provisional. The process of diagnosing is seen as a series of hypotheses that are tested as the treatment progresses. In other words, despite beginning treatment, clinicians are constantly testing the adequacy and accuracy of their clinical reasoning, being ready to change tack should the outcome not quite stack up.

As a clinician and commentator who focuses on the relationship between people with pain and the clinicians they see, it strikes me yet again that the process of diagnosis is often one of relative uncertainty. While it’s pretty easy to determine that a bone is fractured, when pain is the presenting problem and because imaging cannot show pain (and when there are few other clear-cut signs), the clinical reasoning process is far more uncertain.

As I would expect, I’m not the first person to ponder the certainty and uncertainty dilemma in diagnosis. Some of my favourite authors, Kersti Malterud and colleagues (and especially Anne-Marie Jutel!) wrote an editorial for the British Journal of General Practice in which they argue that uncertainty, far from being “the new Achilles heel of general practice (Jones, 2016), instead is absolutely typical of the complexity involved in general practice diagnostic work. They go on to say “The nature of clinical knowledge rests on interpretation and judgment of bits and pieces of information which will always be partial and situated. In this commentary, we argue that the quality of diagnosis in general practice is compromised by believing that uncertainty can, and should, be eliminated.” (p. 244).

In their editorial, Malterud and colleagues point out that the person’s story is essential for diagnosis – and that people have all sorts of reasons for not disclosing everything a clinician might want to know. One of those reasons may well be the clinician’s capability for demonstrating willingness to listen. They also argue that models of disease are social and therefore dynamic (ie what we consider to be disease shifts – pre-diabetes is a good example). People who don’t fit the received model of “what a symptom should be” may not be heard (think of women with heart disease may not present in the same way as men), while those with “medically unexplained” problems just do not fit a disease model.

They make the point that clinicians need to recognise that clinical testing “does not eliminate uncertainty, rather the opposite as it introduces false positive and negative results.” For my money, diagnostic testing should only be used if, as a result of that diagnosis, clinical management will change – and just to add another dollop of my opinion, I’d rather avoid testing if not only does clinical management not change, but outcomes are no different!

I think the call for certainty emerges from what Malterud and co describe as “The rationalist tradition” which “seeks to provide a world of apparent security where certainty is readily achievable.” The problems of both low back pain and many types of mental illness demonstrate very clearly that knowledge allowing us to be certain only covers a tiny amount of the territory of ill health. There is more unknown and uncertain than certain.

I’ll end with this quote from Malterud and co’s paper “Clinical practice must therefore develop and rely on epistemological rules beyond prediction and accuracy, acknowledging uncertainty as an important feature of knowledge and decision making. Nowotny (2016) suggests the notion ‘cunning of uncertainty’ as a strategy where we get to know uncertainty and acquire the skills to live with it.” In occupational therapy practice, uncertainty is always present in our problem-solving process – and consequently I don’t “diagnose”. I never know the effect of a tendency to “think the worst” or “worry” or “avoid because I’m scared” – the constructs it was suggested that I “diagnose”. Firstly because while I might recognise a pattern or tendency – I don’t know when, where, how or why the person may do that thing. And context, purpose, motivation and response all matter when it comes to people and what they do. And secondly, diagnosing suggests that we have a clear and specific approach to treat – and in most of my clinical work, certainty around outcome is definitely not a thing. We never really know if our suggestions are “right” because most of the impact of what we suggest is on the person within his or her own life. In my practice the outcomes ultimately determine how well I’ve worked with someone. Perhaps NSLBP is another of these human predicaments where being certain is less advantageous than embracing uncertainty and an unfolding narrative in someone’s life.



Engebretsen, E., Vøllestad, N. K., Wahl, A. K., Robinson, H. S., & Heggen, K. (2015). Unpacking the process of interpretation in evidence‐based decision making. Journal of Evaluation in Clinical Practice, 21(3), 529-531.

Malterud, K., Guassora, A. D., Reventlow, S., & Jutel, A. (2017). Embracing uncertainty to advance diagnosis in general practice. British Journal of General Practice, 67(659), 244-245. doi:10.3399/bjgp17X690941

Nowotny H. The cunning of uncertainty. Cambridge: Polity Press, 2016

Why do clinicians fear telling people their pain may persist?


There is a big void in our understanding of interactions between clinicians and people who live with persistent pain, and that vacuum is about how people learn that their pain is not going anywhere soon. Recently I searched for qualitative research examining the conversations between clinicians and patients at the moment of diagnosis: that moment when a clinician says “I’m sorry, but you’ve tried all there is to try, and it looks like your pain might not respond”. Or it might be “We’ve found out what your problem is, but we know that right now, there aren’t any very effective treatments”.

Oddly enough – or perhaps not – this is incredibly difficult to find. I wasn’t able to locate any specific studies (though if someone else has found some I’d be very happy to get a list!). The closest I found was a synthesis of qualitative studies by Toye, Seers and Barker (2017) looking at the experiences of healthcare professionals while treating people with persistent pain. In it, the authors identify six themes that seemed apparent after synthesising the included studies:

  • Skepticism in medicine where a person is ill – but diagnosis is difficult. The authors point to the strong culture within medicine in which subjectivity is valued less (they say “shunned”) than objectivity. But of course, pain is always subjective.
  • Clinicians have to “do the work” of reconciling the person they see in front of them and the absence of objective clinical findings – this is difficult when a biomedical model is preferred over a biopsychosocial model. (I could add here that unless that biopsychosocial model is truly integrated as a whole, it could turn into a dichotomous not “bio” then “psychosocial” but that’s another discussion)…
  • Clinicians also have to work in a space where either their clinical knowledge is not relevant, or it’s actively unhelpful, meanwhile trying to help a person who wants and needs certainty and support.
  • Clinicians also have a dual duty: responding to the person who is distressed while also remaining aware that some of what the person wants may not be helpful or good – with some of the concerns being also about the healthcare system, and using investigations that are unnecessary and wasteful.
  • As a result of these multiple demands on clinical balance, clinicians may bear a personal cost in terms of emotional energy, empathy and perhaps as a result find it difficult to want to engage with people for whom they feel the “work” will be hard and unrewarding.
  • Ultimately, clinicians working in this field develop a “craft of pain management” which they believe defies algorithms and categorisations, and instead is an ongoing interplay of call and response.

I can completely understand these challenges. If clinicians “measures of success” are resolution or a problem, or at least effective management of a problem, the difficulty in most instances of persistent neuropathic or nociplastic pain is the limited number of medications, and their relatively poor effectiveness. And other approaches (exercise, coping strategies etc) are equally limited. So – we might need to establish a different measure of success, and that’s hard.

In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people with persistent pain on a social media group to give me their account of how they were given the news about persistent pain. The themes that emerged were:

  • No-one told me my pain would persist.
  • Despite surrounding myself with a broad multidisciplinary team, no-one broached the subject.
  • Pointing to the presence of supposed pathology – “you’ll need surgery”
  • “what we’re doing isn’t helping” – despite best efforts.
  • Being put into a category of people who can’t be helped.
  • No-one showed me how to live with this pain
  • Being told casually as if it were no big deal – this shouldn’t have a big impact on you.
  • I was told there’s no cure, no effective treatment and the idea is to make life tolerable but I will probably never be pain free.
  • The diagnosis of a disease was given – but I wasn’t told it was the reason I hurt.
  • You have chronic pain and there’s not likely to be a cure in your lifetime.

In my interactions with people online, both people with pain and those hoping to treat, I’ve heard a number of opinions: we should never “give up” on pain reduction; we don’t want to “kill hope”; there’s always something we can do …

Here are a few questions:

  • When do we admit we don’t have a 100% success rate for treating persistent pain?
  • Given that people with pain often put their lives on hold until there is a diagnosis and treatment plan (usually aimed at pain reduction and/or cure) – how long does someone need to put their life on hold until we acknowledge that the cost of waiting outweighs the uncertain benefits of pain reduction?
  • Is this a decision we as clinicians should make? If it’s a collaborative decision, do we provide people living with pain an unbiased and neutral view of their options?
  • Fundamentally, do we fear living with pain ourselves, and does this in part fuel our desire to keep treating?
  • What do you think it’s like for a person living with pain to never be told that this is reality? Because people will blame themselves (for not trying hard enough), blame their health professionals (for not looking hard enough), blame the system (for not funding enough) – when actually there is no secret stash of treatments for people who are “good enough” to get them.
  • If someone is told “chances are high this won’t resolve quickly, if at all” does this mean nothing will ever change? Or simply that we’re giving permission to ourselves and the person to find ways to have a meaningful life with pain? What if we conveyed the reality that currently there may not be a way to reduce pain, but this doesn’t mean it will be forever – and in the meantime we can work together to create a life that is fulfilling?

I guess the sad thing for me is that even though we’ve had persistent pain management programmes available in various forms since the 1970’s, with the flush particularly evident in the 1990’s and waning ever since, people are still not given the opportunity to have good support while learning how to live well with pain.

Because until we have at least a 90% success rate with our treatments for persistent pain, I think we need to be humble and admit these approaches are still needed.

Toye, F., Seers, K., & Barker, K. L. (2017). Meta-ethnography to understand healthcare professionals’ experience of treating adults with chronic non-malignant pain. BMJ Open, 7(12), e018411. doi:10.1136/bmjopen-2017-018411