Pain

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: 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

Uncertainty: perennial controversies in pain understanding


As I write this post today, yet again there are new theories being proposed for that most common of experiences: pain. Not only theoretical controversies, but even the definition of pain is being debated – is pain an “aversive” experience? An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury. Some researchers have recently “found” a new nociceptive fibre (though they persist in calling it a “pain fibre” – once again perpetuating the idea that pain is one and the same with nociception).

One of the conversations is whether pain is a sensation, or an emotion, or something else. When I went to University and studied psychology, sensation was defined as “information transmitted by sensory receptors” – in other words, activity in the sensory receptors prior to perception is classified as sensation. Emotions are also defined in psychology, and depending on the theory being followed might be defined as “a complex reaction pattern, involving experiential, behavioral, and physiological elements.” Perception involves recognising and interpreting sensory information, and invokes the idea of awareness as an essential feature. (This is a good place to begin searching for definition – click)

The term aversive indicates “a physiological or emotional response indicating dislike for a stimulus. It is usually accompanied by withdrawal from or avoidance of the objectionable stimulus.” So pain, unlike most sensory experiences also contains an intrinsic element of distaste and avoidance – even people who pursue painful rituals like body suspension will acknowledge that the experience of being pierced is not pleasant but do it to achieve something else, often a feeling of achievement, accomplishment, meeting a challenge. Doesn’t sound too different from people who enjoy running a marathon, or lifting heavy weights.

The new proposed definition also includes the phrase “caused by, or resembling that caused by actual or potential tissue damage” – because we learn to associate the experience we call pain (or whatever word we use in our first language) with what happens when we graze our skin, get pricked by a needle, or knock our shin. For potential tissue damage, think of those staring contests we used to do as kids: who will blink first? Or consider how long we can sit before we’ll move to relieve the numbness-then-ouch on our buttocks! I prefer the term “associate” than “caused by” because we don’t always perceive pain at the time of tissue damage (think about the bruises we find in the morning after a sports game – but we don’t recall exactly how we got them).

So, for what it’s worth, pain isn’t simply a sensation (the experience is always aversive, and invokes an emotion alongside the sensory characteristics) and it’s not simply an emotionit’s a perception, an interpretation of sensory input via nociceptors in the context of current goals (and consequently, attentional focus), social meaning and values, and past experiences (both personal and vicarious). These latter aspects are really important because it’s not uncommon to fail to perceive “ouch” during an important sports game when the attention is elsewhere, and some beautiful experiments have shown that our perception of a potentially painful experience is influenced by what we’re told about the stimulus (Arntz & Claassens, 2004).

The controversies over a definition of pain matter because after the original definition of pain was agreed upon, it was finally possible for researchers, clinicians and commentators to distinguish between the experience and its sensory apparatus. This is important because it enables a focus beyond what goes on in the tissues, to the person’s experience. Prior to defining pain in this way, if a person claimed to have pain but there was no nociceptive activity, he or she was considered lying or mentally unwell. Traces of this attitude continue to this day, sadly.

Focusing on the person’s experience has allowed treatment to shift beyond “issues in the tissues” to help the person deal with what has happened. Even in the absence of current tissue damage and pain, people can continue to be fearful of potential tissue damage and potential pain. Should anyone question this, I usually point out the extraordinary lifestyle changes made by people who have had angina. These people may not be currently experiencing any chest pain at all – but yet protect themselves from the potential of chest pain because “it might happen again.”

A shift away from addressing sensory stimuli towards helping a person who is experiencing pain involves moving away from a biological-only model of disease. We usually call this a biomedical model where what goes on in the body is considered separately from the person who is the subject of “disease”. Of course, this is a straw man argument because biomedical models have been extending to include the person for at least 30 years. Most medical practitioners would want to address the “why has this person fallen and fractured their neck of femur” alongside “fixing the neck of femur fracture with a plate and pin.” But, it troubles me greatly when I hear people say “but what about the bio?” when it comes to incorporating a broad, multifactorial understanding of people experiencing pain into pain rehabilitation. A multifactorial model (call it biopsychosocial if you will) has never negated the biological contributing factors – but has instead placed those factors into relative importance with psychological and social contributions. And psychological and social factors seem to have more to contribute to our experience of pain and resultant disability than, in particular, what happens to a tendon or disc.

And this leads me to the perennial problem of what do we do if pain doesn’t settle, despite our best efforts. This problem is a real and ongoing challenge for both the person experiencing pain, and his or her health. I think it’s a question many health professionals shy away from. Are we afraid we’ve let the person down? Let ourselves down? Failed somehow? What is it like for the person with pain – constantly wondering if this next treatment will do the trick? Or the next? Or whether they’ve failed? Or is it something sinister? There’s no doubt that pain is aversive and it can invade so much of life – but if so much of our experience of pain is related to how we interpret it, what if we were able to re-interpret this experience as less sinister, less distressing?

Health professionals are powerful attitude shapers. Could we use this influence to help people be a little less afraid of pain, and maybe a little more confident that although pain is inherently aversive, humans are infinitely creative and resourceful and can make peace with pain’s presence?

“‘Specialized cutaneous Schwann cells initiate pain sensation”. Abdo H, Calvo-Enrique L, Martinez Lopez J, Song J, Zhang MD, Usoskin D, El Manira A, Adameyko I, Hjerling-Leffler J, Ernfors P.
Science. doi:10.1126/science.aax6452

Arntz A, Claassens L. The meaning of pain influences its experienced intensity. Pain. 2004;109: 20–25. pmid:15082122

Informing — and knowing


Learning is perceived as a process of personal and social construction where people are actively involved in making sense of information they interact with, rather than passively receiving it (Kuhthau 2004). This cumulative and developmental process involves the whole person in thinking, acting, reflecting, discovering ideas, making connections, and transforming prior knowledge, skills, attitudes, and values into new knowledge (Dewey 1933).

I’m an educator for much of my time. When I think about it, I’ve been an educator for most of my clinical career – after all, when I helped people learn how to shower and dress again after a stroke, I was teaching. When I help someone work out how to organise their day to optimise energy levels, I’m teaching. And when I interact online in some of the Facebook groups I’m part of, I’m also teaching.

Teaching is the process of attending to people’s needs, experiences and feelings, and intervening so that they learn particular things, and go beyond the given.

http://infed.org/mobi/what-is-teaching/

When I look at what people do for continuing education, and also how we approach helping people with pain to understand something about how their nervous system works, I think we often do a fine job of providing information. “Information is to behaviour change as spaghetti is to a brick”, said Prof Bill Fordyce, father of behavioural approaches to pain management. As clinicians and educators we spend a great deal of time working out “what” people should/need to know. There’s talk of a “curriculum” for people living with pain so the basic concepts are provided. Information is the “what” – those facts, concepts and often context-free bites of data that are gathered together into information through analysing, cross-referencing, selecting, sorting, summarising or otherwise organising them (Stonier, 1997).

Perhaps where we’re less capable is in supporting people in the process of turning information into knowledge. Knowledge is about integrating information into meaning. It’s magic to see someone have that lightbulb moment when suddenly one bit of information connects with something else the person knows and it begins to make sense!

With CPD I wonder how many of us go to a course, then walk away with our heads jam-packed with new information – then when we walk into clinic we get caught up in the everyday of clinical life, and promptly forget how that new information we’ve stored relates to what we do.

I think the same when I listen to patients talk about what they’ve been told, perhaps about pain, or perhaps about ways they might do things – and they talk of these information bites as disconnected from their daily reality.

To me, the process of developing knowledge involves processing information into personal relevance. It means that, as we learn a new piece of information, we sift through what we already know and establish how the new information might be similar to or different from what we already know. We might ponder when, where, and how this new information can apply. We try using the new information to test its utility. We talk about “what does this mean” with other people as we do this.

A community of practice (Wenger) is a “group of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly”. In a community of practice, people who have become expert or more experienced in doing this activity share their expertise and “knacks of knowing” – novices spend time absorbing what the experts say and do, and ultimately learn to become expert themselves. Communities of practice are everywhere and in our internet and social media-based lives, communities of practice exist virtually as well.

Clinicians often turn to online discussions to carry out their process of turning information into knowledge. Through the debates and discussions (yes, and arguments and flame wars) clinicians become familiar with new information and discuss the implications for practice. It’s common to see clinicians use Instagram, Twitter, Facebook, blogging (yes!) as ways to not only produce information but to also make sense of it.

But when I think of comparable and positive opportunities for people living with pain who are also trying to make sense of the many different bites of information they’re provided with, I’m less certain there is a good place to go to be supported in this process. Much of our clinical treatment is carried out individually, one-to-one with patient. Because pain is invisible and so many people are hopeful the experience will be temporary, meeting with and discussing information about pain and ways to live with pain are rare. In fact, there’s plenty of evidence from research showing that people living with pain feel isolated, abandoned and judged (Cagle & Bunting, 2017; Collier, 2018; Wilbers, 2015). Not the best place to be when trying to put pieces of information together.

While as clinicians, we can offer much information – how good are we at helping people connect that information with what that person already knows? How can we – especially if we don’t experience pain? What would we know of the process of going to various therapists, being told many different things, of the highs and lows of benefits and failures?

I run a group programme called Springboard. It’s a six-week programme, one session a week, with home-based “missions” people can do over the week. I’ve always thought the magic happens not when I give out information, but when participants return with their experiences and share what they’ve learned with one another. I don’t the group is simply bridging a feeling of loneliness or stigma, although it certainly seems to do that. I think the magic happens because participants share what this information means to them, when participants help one another connect a new piece of information to what they already know. Because no-one knows better what the meaning of a new understanding is than people living with pain.

So I question us all. Clinicians – do we help people connect with others who are in the same boat to learn from one another? To make sense of what we try to tell them? People living with pain, do you have ways of sifting through new information so you can work out its relevance to you? Can we bring people together – experts in living well with pain and novices learning how this information might apply?

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.

Collier, R. (2018). “Complainers, malingerers and drug-seekers”—the stigma of living with chronic pain. In: Can Med Assoc.

Dewey, J. (1933). How we think. a restatement of the relation of reflective thinking to the educative process (Rev. ed.), Boston, MA: D. C. Heath.

Kuhlthau, C.C. (2004). Seeking meaning: a process approach to library and
information services. (2nd ed.). Westport, CT: Libraries Unlimited.

Stonier, T. (1997). Information and meaning—An evolutionary perspective.
Berlin: Springer.

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.

Clinical reasoning models: what’s wrong with them?


I’ve been interested in clinical reasoning and models used in clinical reasoning for quite some time. Occupational therapy has several models, including the “occupational therapy problem solving process” by Lela Llorens, the Model of Human Occupation by Gary Kielhofner, and the Canadian Model of Occupational Performance by Polatajko, Townsend and Craik in 2007. All of these models were designed to support occupational therapy clinical reasoning processes, and to capture the essence of what occupational therapy is about.

When it comes to pain rehabilitation, I’ve found the occupational therapy models a little lacking in specificity for my clinical reasoning. I’ve also noticed similar problems with proposed clinical reasoning models for physiotherapy when considering pain.

Here’s the thing: if pain involves so many factors (call them biopsychosocial for want of a better all-encompassing term), and we don’t know which factors are relevant for this person at this time, clinical reasoning in pain rehabilitation is complex. Why? Well the problem with pain is that it’s full of ambiguity. Not so much for the person experiencing them, but certainly for the clinician trying to help.

Bear with me a minute. To me, clinical reasoning models help shape the factors we include and those we omit.

In writing that sentence I realise I’m assuming something crucial: that models are designed to help us predict and control what’s going on. Is that the purpose of a model? I quickly did a search and found this definition: “In science, a model is a representation of an idea, an object or even a process or a system that is used to describe and explain phenomena that cannot be experienced directly. Models are central to what scientists do, both in their research as well as when communicating their explanations… Models are a mentally visual way of linking theory with experiment, and they guide research by being simplified representations of an imagined reality that enable predictions to be developed and tested by experiment.” It’s from here.

OK, so in clinical reasoning what utility does a model need? I think a model needs to generate hypotheses that explain the unique presentation of this person, their problems, at this time. A nomothetic representation of what might be going on for this unique person.

Occupational therapists and physiotherapists, and probably psychologists, are all concerned less about impairment (that’s damage or dysfunction at the body structure level) than we are about the impact this has on functional limitations and on participation. This doesn’t mean we’re not interested in impairment, but our focus is much more likely to be on “and what impact does that have on what you need and want to do”. Occupational therapists, in particular, are concerned about “and how does this affect the way you participate in our world”.

But if we look at clinical reasoning models in our various professions I think there are some gaps. I don’t think our models invite us to generate hypotheses because the various clusters of information don’t seem to link together in a terribly coherent way. Yet – with all the information around us, there are some causal (or bidirectional) relationships we can consider.

For example, we know that if someone is very fearful of their pain, they’re likely to describe elevated physiological arousal, and they’re not as inclined to engage in movements they believe will exacerbate their pain.

A line of reasoning goes from Fear -> Physiological arousal and Fear -> Avoidance.

This simple set of hypotheses generates some ideas about what might help. Firstly we’d test the presence of fear – is it just happening in this moment, or is it something that’s been present consistently? Mostly we ask the person, but we could use a questionnaire measure of fear of pain. We could also test for physiological arousal – is this present? How do we know? We could use various biofeedback devices, or we could simply ask (or use a questionnaire). And of course we can test for fear-avoidance as a combined construct via questionnaire and/or behavioural testing.

This set of steps really just determines whether our hypotheses are present, so now we need to generate some treatments. In this case, we also draw on research and think about providing information – this, we hypothesise, should reduce reported fear. So we embark on some explanations about what’s going on – and we should see a reduction of fear on a measure of pain-related fear. But perhaps not on avoidance because we know that behaviour change requires more than simply information. We might also help the person down-regulate their excitable nervous system, reducing that “fear -> arousal” relationship. And finally we might begin doing some exposure work which acts on reducing fear in the presence of doing something scary (movements) and so reduce the relationship between fear -> avoidance.

What the example above shows us is what might happen once we’ve identified some potential phenomena that may be present. What it doesn’t show, and something I struggle to find in many clinical reasoning models, is how clinicians identify those phenomena. Why would someone think to ask about fear of pain? Especially if we believe that our job is to help reduce pain and pain’s the only reason the person isn’t doing things. And even more – if we think our job is to deal with “physical” and fail to recognise the relationship between “physical” and “feelings, beliefs”.

You see, I think broad “groups of factors to consider” belongs in the assessment, but we need something more tangible when formulating an individualised explanation. We need to be generating hypotheses about how these various factors interact and lead to a presentation – and while much of this will be conjecture initially, by generating various hypotheses we can then go on to test them – and ultimately establish the priorities for treatment in collaboration with the person. That’s much easier to do when we’ve fleshed out why the person isn’t able to do what’s important to them, and we’ve synthesised all the known factors in some explanatory model.

Is this complex? Yes – but who said it had to be easy? This is why we do the work we do, because it’s complex and “common sense” doesn’t cut it. And if our various professions really want to adopt a sociopsychobiological framework for pain, maybe our clinical reasoning models need to synthesise all these factors in some coherent way rather than simply plonking the groups of factors down without integrating what’s known about the relationships between variables from different domains.

Wacker, J. G. (1998). A definition of theory: research guidelines for different theory-building research methods in operations management. Journal of Operations Management, 16(4), 361-385.

Yazdani, S., Hosseinzadeh, M., & Hosseini, F. (2017). Models of clinical reasoning with a focus on general practice: A critical review. Journal of advances in medical education & professionalism, 5(4), 177-184.

Clinical reasoning & meaning-making (a long post)


Clinical reasoning is a cornerstone of evidence-based healthcare, in fact some would argue it’s the cornerstone of all healthcare. While there are many different processes, the ultimate purpose of clinical reasoning is to ensure the person seeking help has their needs identified then met, and the clinician has a basis upon which to decide which treatment they should offer.

The approach we use in clinical reasoning, including the information we prioritise and search for, and the way we synthesise the information to make sense of it will depend on the model we have to explain our treatment approach. For example, if we’re occupational therapists, we’re looking for information about the occupations the person wants and needs to do (identifying the person’s needs), and we search for information to help explain how and why this person is unable to manage their occupations at this time. Because occupational therapy is concerned with context – social, interpersonal and environmental, as well as looking at pathophysiological processes, we will also review psychosocial-spiritual factors (beliefs, attitudes, desires, interactions, values, etc) and the physical and social environment/s as part of our clinical reasoning.

Meaning making

But… there’s something missing from this picture of how we go about doing clinical reasoning: the very process of enquiring about “daily doing” (aka occupation) is likely to influence the person seeking help. There is a dynamic process involved in making sense of what’s going on between the clinician and the person. Some would call this “intersubjectivity” (Quintner & Cohen, 2016) meaning “a shared perception of reality between embodied agents… meanings expressed through performance and …perceived by others”, some would call it “embodiment” (Arntzen, 2018) meaning bodily aspects of human subjectivity and referring to my phenomenological body (the way I experience my body), and still others wouldn’t recognise it at all! I like to call it “meaning making” or the way that both parties make sense of what goes on in the “meet the therapist moment” as Benedetti (2011) puts it.

Much of the discussion about clinical reasoning refers to the way clinicians blend implicit/tacit knowledge (knowledge that’s so well-learned that it’s hard to state exactly what it is) with explicit/declarative knowledge (knowledge that we can articulate). Each profession has its own implicit body of knowledge that frames the way they approach the clinical problem. I think patients, or people seeking health care, also have implicit knowledge they bring to the clinical setting.

Some of the knowledge brought in from people seeking treatment is the inner sense that “something is wrong with me”. Without the sense that something is wrong, we don’t seek healthcare, and this can explain why problems like bowel cancer can go unnoticed until the disease is in an advanced state – because symptoms are either very subtle, or not present. With low back pain we know that for most people the sense that “something is wrong” is almost immediate, but may not evolve into treatment-seeking until the problem either doesn’t follow the typical path of recovery, or the pain begins to interfere with what’s important in daily life (Ferreira, Machado, Latimer, Maher, Ferreira, & Smeets, 2010).

We acquire the idea of “something is wrong with me” from personal experience (that queasy feeling just before you get seasick), from others around us (you’re looking really pale today, are you OK?), and from broader society (if your pain persists, see your health professional). But, from some of the qualitative studies I’ve been reading, I think we really start to notice and do something about our “something is wrong with me” intuition once we can’t do things that are important to us and help to define our sense of self (Darlow, Brown, Lennox Thompson, Hudson, Grainger, McKinlay & Abbott, 2018).

It’s clear to me that both the person seeking help and the clinician hold tacit knowledge, and that this knowledge/information is likely to influence clinical reasoning. And some of the implicit knowledge in both clinician and patient changes without either party recognising that’s what has happened.

Back to clinical reasoning and meaning making.

Something I noticed when developing my theory of living well with chronic pain was that many people with ongoing pain learn about the effects on daily doing by themselves (Lennox Thompson, Gage & Kirk, 2019). What I mean by this is they establish what they can and can’t do in mini-experiments (experiences) each day. This experimentation and experience is strongly influenced by the person’s interpretation of what the pain means – and the confidence they have to find ways to cope or deal with pain. Because so much of our knowledge about pain is based on acute pain that generally settles down quickly, it’s unsurprising that some interpretations of persistent pain go awry.

Given the impact of persistent pain is firstly on being able to do what’s important in a person’s life, it makes sense to me that our clinical reasoning should incorporate an understanding of what the person needs and wants to do. It also makes sense to me that we need to understand the person’s current perspective: their beliefs, assumptions and experience of what pain has interfered with. This doesn’t mean that the person’s perspective is 100% accurate with respect to what is going on in their body, because as I pointed out above, many of our beliefs about “what is wrong with me” are based on social constructs. Having said that, it doesn’t mean our clinical interpretation is any more “accurate” – it does, however, mean that until our perspectives align, we’re likely to have trouble developing a shared meaning of the problem. As Arntzen points out “there is a tendency in person-centered occupational therapy practice to consider only the patient-articulated experience and not the multiple layers of embodiment and co-construction of meaning within the therapeutic relationship” (Arntzen, 2018).

One form of clinical assessment, perhaps one that’s under-used, is as Arntzen (2018) describes, the ongoing dialogue between a clinician and the person as the person enacts movements or engages in occupations. This kind of meaning making involves physical and cultural contexts (I may visit a cafe with my client to see how she navigates the tables and people, how she stands and then sits while drinking her coffee, and how she moves from this location to her car); it involves conversations with her about what is going through her mind as she encounters these situations; I may change the location of our next session on the basis of interpreting her performance in this context, adapting my voice, my body language to convey my assessment of this performance.

At the same time, the person I’m working with is also making meaning of how she managed in this situation. From my nonverbal and verbal response to what she does, she may infer that I think she’s doing fine, or that I’m worried about her capabilities. You’ll notice that much of this implicit shared meaning making is not verbal – it’s inference, and may well be inaccurate.

I really like Arntzen’s description of the way clinician and person can work together to develop a shared understanding of “the problems” – I’m quoting it whole:

An embodied intersubjective reasoning can be about questioning how the patient senses their changed body during performance and what it means for his or her ability or obstacles to act, learn, and change. This mode of reasoning can help the occupational therapist problematizing the patients’ performance, capabilities, and possibilities as an interrelated process between action failure, lived habitual practice, and ongoing and shared meaning-making.

Arntzen, 2018

I also love this depiction of therapy: Therapy is a context- specific dialogue between two interpretive, embodied agents, in which the outcomes of their relationship are not given in advance (Arntzen, 2018).

How can all clinicians use this perspective?

While Arntzen is an occupational therapy commentator, and I have framed this post through an occupational therapy lens, I think there is much that other movement and doing-oriented clinicians can draw on. The “ambiguous body” is also core to much of physiotherapy: the person’s experience of being within a body with its attendant limitations, and the body through which goals and aims and life is lived. The ambiguity is particularly relevant in pain where “not being myself” dominates the person’s sense of self – because the experience of pain and movement renders familiar actions as different and needing more attention than usual, or failing where it hadn’t before. Doing is disrupted, and therefore “being” the person I know myself to be is also disrupted. The way the person experiences his body can be influenced by an empathic clinician, to help him recognise changes, or become aware of a return to familiarity.

Arntzen (2018) also refers to tools or the things we use during daily doing – the toothbrush, the car, the clothing we wear, the phone we use that now doubles as computer, camera, aide memoir. Although we can think of these things as “things” have you noticed that you talk about “my phone”, “my car” – and the choice of phone or car situates you in your social environment. If you’ve ever picked up another person’s phone by accident, it just doesn’t feel right even before you recognise that it’s not your own! Occupational therapists incorporate “things” as part of enabling occupation, as do physiotherapists who may incorporate walking aids, temporary splints, or use gym equipment as part of therapy. I think it’s worth considering how the person experiences these things – are they integrated into a sense of self? (think of those tatty neoprene wrist splints worn for months, if not years; and also ponder the gym equipment that still seems alien even after completing a six week rehabilitation programme).

Finally, the crucial element of what we attend to during therapy – and the things we focus on and draw the person to notice – is about our own embodied presence. Arntzen says “Through moment-to-moment interaction, the therapist can have an effect on what becomes foreground and what is background for the patient during the act. The therapist may support or hinder the patient’s habitual practice, or may facilitate or hold back the patient’s own capability to explore new strategies, develop compensatory techniques, and find alternative solutions” (Arntzen, 2008). I’ve often described this process when teaching about eliciting automatic thoughts during movements (eg riding a bike or walking over a slippery floor) – if we attend to “purity of movement” or biomechanics or some externalised idea of how someone ought to do something, we’re likely to elicit more of that and it may be unhelpful. If we collaborate with the person and interconnect we’re just as likely to learn from him as he is from us. I like Schell’s (2014) description of this form of clinical reasoning: ecological professional reasoning.

Concluding

To conclude this lengthy post, I think too often clinicians have viewed their role as dominant, and what they say or ask the person to do as the primary therapeutic agent. I also think there’s a reason someone seeks help from a clinician. Relying only on one form of knowledge without integrating other forms (from the other person, using only language, being primary active agent etc) doesn’t seem to represent what actually goes on in therapy.

Many people with persistent pain learn what they can and can’t do on the basis of experiments that (often, at least in our most disabled people) lead to failure and recognising “I can’t do that any more”. Our approach has been to administer corrective exercises, experiences in moving differently, but we may well have forgotten both the contextual nature of doing and the experiential interpretation made by the embodied person. If we want to help people return to “feeling like themselves” maybe we need attend more carefully to the “what it is like” to experience this new experience, and then support the person to experiment in their own context. I’d call this knowledge translation, or perhaps occupational therapy.

Arntzen, C. (2018). An embodied and intersubjective practice of occupational therapy. OTJR Occupation, Participation and Health, 38(3), 173–180. https://doi.org/10.1177/1539449217727470

Benedetti, F., & Amanzio, M. (2011). The placebo response: How words and rituals change the patient’s brain. Patient Education and Counseling, 84(3), 413-419. doi:http://dx.doi.org/10.1016/j.pec.2011.04.034

Brooks, R., & Parkinson, S. (2018). Occupational formulation: A three-part structure. British Journal of Occupational Therapy, 81(3), 177–179. https://doi.org/10.1177/0308022617745015

Darlow, B., Brown, M., Thompson, B., Hudson, B., Grainger, R., McKinlay, E., & Abbott, J. H. (2018). Living with osteoarthritis is a balancing act: an exploration of patients’ beliefs about knee pain. BMC Rheumatology, 2(1), 15.

Ferreira, M. L., Machado, G., Latimer, J., Maher, C., Ferreira, P. H., & Smeets, R. J. (2010). Factors defining care-seeking in low back pain–A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi:http://dx.doi.org/10.1016/j.ejpain.2009.11.005

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. doi:10.1080/09638288.2018.1517195

McCambridge, J., Witton, J., & Elbourne, D. R. (2014). Systematic review of the Hawthorne effect: new concepts are needed to study research participation effects. Journal of Clinical Epidemiology, 67(3), 267–277. https://doi.org/10.1016/j.jclinepi.2013.08.015

Quintner, J., & Cohen, M. (2016). The challenge of validating the experience of chronic pain: the importance of intersubjectivity and reframing. In Meanings of Pain (pp. 281-293). Springer, Cham.

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.

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

Othering


When we look at someone else, we first start by identifying the differences between that person and ourselves. It’s only later that we spend some time identifying the similarities between ourselves and that “other”.

There’s a problem in pain management today. It’s this: too few of “us” are “them” – by which I mean, there are too few people who identify as living with persistent pain working with people who are seeking help for their pain.

“Why is this a problem?” you ask… Well, it’s because it’s far too easy for “us” healthcare providers to forget that persistent pain affects people just like us. Yes, I know the stats: lots of people with persistent pain are multiply disadvantaged by socio-economic status, gender, ethnicity, age, multiple morbidities. But – and this is important – persistent pain doesn’t discriminate, but disability and distress might.

Othering was first brought to attention by Simone de Bouvier. de Bouvier was interested in the way women’s voices were hidden and often compared with men’s voices. “Why”, said men. “Are women not like us?” The answer was evident: women are not men. And in establishing that women are “other”, or “not men”, those dominant voices were able to not only elevate their own voices to prominence, but also minimise and trivialise the words of women.

There are, according to Lajos Brons, two main forms of “othering” – crude, where the assumed differences are stated; and sophisticated, where the assumed differences are stated – and seem reasonable. Let me give an example. It seems reasonable that people seeking help for their pain are needing something they don’t have. And the people they seek help from (healthcare professionals) have that something. Sensible, yes?

“What’s the problem?” you ask. Well, it’s because alongside noticing the difference between the person seeking help and “us” who might have some answers, we also begin to distance ourselves from “them”. And in doing so, we begin to dehumanise or consider that person to be different and somewhat less than us.

I don’t want to accuse readers of stigmatising people who live with pain, so let’s take a moment to unpack what I’m trying to say.

When we talk about someone who is experiencing pain and having trouble with it, we begin by trying to work out what’s going on. In the very best circumstances, we create a “third space” where we can meet one another on an equal footing – both focusing on “what’s going on here”, and neither one assuming a superior position, because while “we” the healthcare professional, might have lots of knowledge about the various factors that could be contributing to this person’s situation, “we” actually know absolutely nothing of this person’s reality, their experience. Meanwhile, the person seeking our help is the expert on what life is like with their pain, their worries, their strengths, their supports, their vulnerabilities. So we meet in the middle, and collaborate, to try to work out how we can develop something new.

Sadly, that space can be muddied by a whole lot of things. We might bring our assumptions about the “other” – that they’re afraid, they need information, they want whatever solution we provide. The person might bring their fear of being misunderstood, their memories of the last time someone “tried” to help, perhaps their idea of what we want to know. We may end up talking past one another.

Let’s see what we can assume about the person in front of us. We might think they just need to know their pain is “an output of the brain” and that “hurt doesn’t equal harm”. We might spend some time educating that person about neurobiology. We might think they need exercise. They need to lose weight. They need do more mindfulness. They need to go back to work. And so our plans for “them” are set in motion. None of these things are bad or wrong – except when we think of the person needing these things before we’ve taken the time to hear what they really want.

What does the person want? Probably like many people, they’d like someone to listen to their perspective. Then they’d like to have some daily practical problems solved: perhaps knowing that they’re not harming themselves. Then maybe some sleep management. And perhaps some time out from people telling them what to do. And maybe some explanations – but only once we’ve taken the time to listen.

“Othering” is one way health professionals maintain a professional distance. By knowing that “we” already do these things, we can feel good about what we offer “them”. But I’d like to ask: how many of us have daily, weekly, monthly goals? How many of us have set them with the SMART acronym? And how many of us have our days timetabled to make sure we do all the things expected of us? What if we have an off day? Is it OK or do we have to explain ourselves? And how many of us also live with persistent pain? I think more of us live with pain than we’re honest about…

I’ve heard “us” talk about “them” and it’s not pretty. “They” need to be more goal-focused, more persistent, more relaxed, more revved up. “They” are ‘non-copers’ anyway. “They” have always needed help for everyday life. “They” have disorganised, chaotic lives.

I wonder what would happen if “we” spent some time checking in on our assumptions about “them”? Would we find ourselves mirrored in the people we try to help? I think we would – and it might help us to remember that we’re guides, coaches, and cheering squads, but we’re no better, no worse, and just as human as “them”. Oh, and some of “us” might even be one of “them” living with pain every day….

Brons, Lajos. (2015). Othering: An analysis. Transcience, 6(1), p. 69 – 90.

de Beauvoir, S. (1949): Le deuxi`eme sexe, Paris: Gallimard, 1976.

On the problem of coping


Coping. Lots of meanings, lots of negative connotations, used widely by health professionals, rejected by others (why would you need coping skills if you can get rid of your pain?).

I’ll bet one of the problems with coping is that we don’t really know what we’re defining. Is coping the result of dealing with something? Or is it the process of dealing with something? Or is it the range of strategies used when dealing with something? What if, after having dealt with the ‘something’ that shook our world, the world doesn’t go back to the way it was? What if ‘coping’ becomes a way of living?

The reason this topic came up for me is having just written a review for Paincloud on activity patterns (Cane, Nielson & Mazmanian, 2018), I got to thinking about the way we conceptualise ‘problems’ in life.  It’s like we imagine that life is going along its merry way, then all of a sudden and out of the blue – WHAM! An event happens to stop us in our tracks and we have to deal with it.

But let’s step back for a minute: how many of us have a well-ordered, bimbling existence where life is going along without any hiccoughs?!

Back to coping. The concept of coping is defined by Lazarus and Folkman (1980) as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts among them.” It’s identified as a transactional process and one that occurs within a context where the person has both resources and constraints, and a direction in which he or she wants to go.

By contrast, if we look at the research into coping in people with persistent pain, most of the attention is on the “what the person does” and the resources he or she has (see for example Rosenstiel & Keefe, 1983; Jensen, Turner, Romano & Karoly, 1991; Snow-Turkey, Norris & Tan, 1996; and much more recently, measures of coping by Sleijswer-Koehorst, Bijker, Cuijpers, Scholten-Peeters & Coppieters, in press). There are some studies exploring the goals set by the person (Schmitz, Saile & Nilges, 1996), but few studies examine the context in which the person is coping – nor what happens once the coping efforts are successful.

Measuring coping falls into three main buckets: the repertoire (how many strategies do you have?); the variation (which ones do you use and do they match the demands?); and the fitness approach (the choice of strategy depends on the way a person appraises the situation) (Kato, 2012). Out of these three, Kato chose to develop a measure of coping flexibility. Coping flexibility refers to “the ability to discontinue an ineffective coping strategy, and produce and implement an alternative coping strategy”. The Coping Flexibility Scale aims to measure this ability, based on the idea that by appraising the situation, implementing a strategy, then appraising the effectiveness of that strategy and applying a new one, the person is more effective at dealing with the challenge.

One of the most popular measures of coping for pain is the 14-item Coping Strategies Questionnaire (Riddle & Jensen, 2013). It suggests different ways of coping, some of which are seen as helpful, while others are not. Oddly enough, and why I started writing this blog, it doesn’t include the way we go about daily activities – activity patterns. In the study by Cane, Nielson & Maxmanian (2018), two main forms of activity pattern were found: avoidant-pacing, and  overdoing (as measured by the Patterns of Activity Measure – Pain). The avoidant-pacing group used pacing for daily activity management, but did so with the intention of avoiding flare-ups. The overdoing group just did a lot of activity. After treatment, some people moved group – from the two original groups, two more emerged: avoidant-pacing, pacing, mixed and overdoing. The pacing group basically did what everyone says is a great way to manage pain: picking out the right level of activity and sticking with it, using a quote-based approach. The definition used in this study was “… preplanned strategy that involved breaking activities into smaller parts, alternating periods of activity and rest (or an alternate activity), and using predetermined time intervals (or quotas) to establish when to stop an activity. The description of activity pacing provided to patients identified the goal or function of activity pacing as facilitating the completion of activities and ultimately increasing overall activity and functioning.”

As usual there are vulnerabilities in the way this study was conducted, and the main one for me is the follow-up period is non-existent. The reason I worry about this is that in my daily life, as I’m sure happens in many of yours, my pattern of activity varies wildly from week to week. Some weeks, like the weeks just before I headed to Sunderland for Paincloud, and the weeks just after I got back, were incredibly busy. I pushed myself to get things done because there were a heap of deadlines! This week I plan to have some down-time – this afternoon, in fact, because I want to play with some silversmithing.

And it occurred to me that we expect such a lot from the people we work with who live with pain. We ask all sorts of intrusive questions about daily life and we expect people to be able to recall what they did, why they did it, and to make changes and be consistent about these until we’re satisfied they’re “coping”.

But what if coping is actually the way we live our lives? What if coping involves all the myriad self-evaluative activities we all do – like, how hungry, tired, irritable, frustrated, rushed, achey, restless, enthusiastic, apologetic we feel – and endlessly and constantly adjusting the actions and behaviours we do so we can do what, for a moment or two, we think is The Most Important thing for now.

Life is a constant flowing forward. It’s a stream, an avalanche, a train going one way only. We can’t stop the world to get off. And once we’ve “coped” with something, life doesn’t return to “normal” because we’re different. Maybe our priorities change, or our circumstances have, or we have a new insight into what we want, or we work out the goal we had is more important than we thought. What if we are expecting the people who live with pain to do something we’re not even capable of?

I suppose part of my musing is related to mindfulness. Mindfulness involves continually returning to what I want to pay attention to, and doing so without judgement, and also observing without judgement. But it always involves coming back to what I intend to attend to. On and on and on. And the lovely thing about it is that it’s endlessly gentle and forgiving. Let go of the things I forgot to do, or the rushing towards what needs doing. I wonder what would happen if we encouraged people to be mindful for brief moments throughout the day all day long. Would that encourage coping flexibility? Would it encourage using a broader repertoire of ways of dealing with things? Would it help people to be more aware of everyday choosing and prioritising and managing actions to meet what’s valued in life?

To summarise: currently coping is measured using a “catalogue” of actions, often out of the context of daily decision-making and activity management. Activity management can vary from day to day, hour to hour, month to month. Being flexible with how we go about life seems, at least to me, to depend on my being aware of what’s important to me, what my energy is like, and the context in which I life. How well do we measure these constructs in pain management?

Cane, D., Nielson, W. R., & Mazmanian, D. (2018). Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning. Pain, 159(12), 2522-2529.

Folkman, S., & Lazarus, R. S. (1980). An Analysis of Coping in a Middle-Aged Community Sample. Journal of Health and Social Behavior, 21(3), 219-239. doi:10.2307/2136617

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of the literature. Pain, 47(3), 249-283. doi:http://dx.doi.org/10.1016/0304-3959%2891%2990216-K

Kato, T. (2012). Development of the Coping Flexibility Scale: Evidence for the coping flexibility hypothesis. Journal of counseling psychology, 59(2), 262-273.

Riddle, D.L &  Jensen, M.P. (2013). Construct and criterion-based validity of brief pain coping scales in persons with chronic knee osteoarthritis pain. Pain Medicine 14(2):265-275. doi:10.1111/pmc.12007

Rosenstiel, A. K., & Keefe, F. J. (1983). The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain, 17(1), 33-44.

Schmitz, U., Saile, H., & Nilges, P. (1996). Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67(1), 41-51.

Sleijser-Koehorst, M. L. S., Bijker, L., Cuijpers, p., Scholten-Peeters, G. G. M., & Coppieters, M. Preferred self-administered questionnaires to assess fear of movement, coping, self-efficacy and catastrophizing in patients with musculoskeletal pain – A modified Delphi study. Pain. in press

Snow-Turek, A. L., Norris, M. P., & Tan, G. (1996). Active and passive coping strategies in chronic pain patients. Pain, 64(3), 455-462. doi:10.1016/0304-3959(95)00190-5

From the particular to the general – Clinical reasoning in the real world


From the particular to the general –
Clinical reasoning in the real world

I make no secret of my adherence to evidence-based healthcare. I think using research-based treatments, choosing from those known to be effective in a particular group of people in a specific context helps provide better healthcare. But I also recognise problems with this approach: people in clinical practice do not look like the “average” patient. That means using a cookie cutter, or algorithm as a way to reduce uncertainty in practice doesn’t, in my humble opinion, do much for the unique person in front of me.

I’ve been reading Trisha Greenhalgh’s recent paper “Of lamp posts, keys, and fabled drunkards: A perspectival tale of 4 guidelines”, where she describes her experience of receiving treatment based on the original description given for her “fall”. The “fall” was a high-impact cycle accident with subsequent limb fractures, and at age 55 years, she was offered a “falls prevention” treatment because she’d been considered “an older person with a fall”. Great guidelines practice – wrong application!

Greenhalgh goes on to say “we should avoid using evidence-based guidelines in the manner of the fabled drunkard who searched under the lamp post for his keys because that was where the light was – even though he knew he’d lost his key somewhere else”

Greenhalgh (2018), quoting Sir John Grimley Evans

When someone comes to see us in the clinic, our first step is to ask “what can I do for you?” or words to that effect. What we’re looking for is the person’s “presenting symptoms”, with some indication of the problem we’re dealing with. Depending on our clinical model, we may be looking for a diagnostic label “rheumatoid arthritis” or a problem “not sleeping until three hours after I go to bed”.

What we do next is crucial: We begin by asking more questions… but when we do, what questions do we ask?

Do we follow a linear pattern recognition path, where we hypothesise that “rheumatoid arthritis” is the problem and work to confirm our hypothesis?

Our questions might therefore be: “tell me about your hands, where do they hurt?” and we’ll be looking for bilateral swelling and perhaps fatigue and family history and any previous episodes.

Or do we expand the range of questions, and try to understand the path this person took to seek help: How did you decide to come and see me now? Why me? Why now?

Our questions might then be: “what do you think is going on? what’s bothering you so much?”

Different narratives for different purposes

Greenhalgh reminds us of Lonergan (a Canadian philosopher), as described by Engebretsen and colleagues (2015), where clinical enquiry is described 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.

Engebretsen and colleagues emphasise the need to work from information from the individual to general models or diagnoses (I’d call this abductive reasoning), and argue that this process in the clinic should be “reflexive” and “informed by scientific evidence” but warn that scientific evidence can’t be replaced simply by reflexive approaches.

The reason for conceptualising clinical reasoning in this way is that a narrative primarily based on confirming a suspicion will likely reduce the number of options, narrow the range of options considered, and if it’s focused on diagnosis, may well over-ride the person’s main concern. A person may seek help, not because he or she wants a name or even treatment, but because of worries about work, the impact on family, or fears it could be something awful. And without directly addressing those main concerns, all the evidence-based treatments in the world will not help.

Guidelines and algorithms

Guidelines, as many people know, are an amalgamation of RCT’s and usually assembled by an esteemed group of experts in an attempt to reduce unintended consequences of following poorly reasoned treatment. They’re supposed to be used to guide treatment,  supporting clinical reasoning with options that, within a particular population, should optimise outcomes.

Algorithms are also assembled by experts and aim to provide a clinical decision-making process where, by following the decision tree, clinicians end up providing appropriate and effective treatment.

I suppose as a rather idiosyncratic and noncomformist individual, I’ve bitterly complained that algorithms fail to acknowledge the individual; they simplify the clinical reasoning process to the point where the clinician may not have to think critically about why they’re suggesting what they’re suggesting. At the same time I’ve been an advocate of guidelines – can I be this contrary?!

Here’s the thing: if we put guidelines in their rightful place, as a support or guide to help clinicians choose useful treatment options, they’re helpful. They’re not intended to be applied without first carefully assessing the person – listening to their story, following the four-step process of data collection, data interpretation, judging alternatives, and deciding on what to do.

Algorithms are also intended to support clinical decision-making, but not replace it! I think, however, that algorithms are more readily followed… it’s temptingly easy to go “yes” “no” and make a choice by following the algorithm rather than going back to the complex and messy business of obtaining, synthesising, judging and deciding.

Perhaps it’s time to replace the term “subjective” in our assessment process. Subjective has notions of “biased”, “emotional”, “irrational”; while objective implies “impartial”, “neutral”, “dispassionate”, “rational”. Perhaps if we replaced these terms with the more neutral terms “data collection” or “interview and clinical testing” we might treat what the person says as the specific – and only then move to the general to see if the general fits the specific, not the other way around.

 

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.

Greenhalgh, T. (2018). Of lamp posts, keys, and fabled drunkards: A perspectival tale of 4 guidelines. Journal of Evaluation in Clinical Practice, 24(5), 1132-1138. doi:doi:10.1111/jep.12925