Pain

Secondary gain: really?


One of my most popular posts ever is one I wrote many years ago on malingering. Secondary gain, like malingering or symptom magnification is one of those terms used by people who don’t live with persistent pain, and commonly used when a person with pain doesn’t seem to be progressing “as expected”. The term is an old one, originating in the psychoanalytic literature, brought into compensation and insurance environments but never really examined (Fishbain, Rosomoff, Cutler & Rosomoff, 1995) until well after it had become a popular label.

Freud first identified the potential for gains from being unwell – primary gains referred to the direct gains obtained from developing a psychiatric illness in the face of unresolved psychic conflict while secondary gains were considered to be “an interpersonal or social advantage attained by the patient as a consequence of his/her illness”.

The sick role, or illness behaviour, is a sociological phenomenon (Bradby, 2009). As a society we permit people who are unwell to take time off responsibilities of paid employment, caring for others, socialising and doing the everyday life activities that people do. We also, in some cases, pay people to stay away from work, both to undertake recovery and to protect others from the illness in the form of sick leave entitlements and compensation. To ensure “fairness” or a sort of moral agreement between the ill person and society, humans have used healers, shaman or religious authorities to ensure the person has an authentic problem: ie, that they are morally fit to receive our help.

To most of us, particularly people in Australia and New Zealand, UK, Canada with largely socialised healthcare systems, the idea of sharing the burden of ill health through socially sanctioned support seems natural. We allow people a period of time to get well and then, when recovered, the person can return to normal activities. If the person sustains some nasty event, like spinal cord injury or brain injury, leaving him or her with ongoing ill health, we support ongoing payments (some more than others, depending on the funding bucket used). It’s easy to justify this when the person’s problems are visible – but for people with less visible, or truly invisible disabilities, our moral compass starts going awry.

For example, we have Mobility Parking: but woe betide the person with an invisible disability such as irritable bowel disorder, or panic disorder, using the park even when displaying the appropriate sticker! Tut! tut! tut! It is even more difficult with an invisible problem such as persistent pain, and even more so when the person’s problem hangs around. Secondary gain is the word whispered in the wind as people judge whether this person really has a problem – or is it “secondary gain”?

Let’s unpack the notion of secondary gain. From a behavioural perspective, behaviour is repeated if (1) something introduced afterwards increases the likelihood of the behaviour being repeated, eg a tearful child is cuddled after tripping, meaning the next time the child trips, he will look for someone to cuddle him; (2) something unpleasant is removed as a result of the initial behaviour, eg the pain of a grazed knee reduces with some topical analgesia. In these situations, the child is not usually aware that the contingency offered changes what they do – they just do what makes sense.

It’s when we start looking at people who don’t fit the typical response curve after an injury, that commentators begin flinging the term “secondary gain” around as if the person deliberately chooses to remain ill. Of course, insurers who fund compensation received by the person have a vested interest in reducing their payments and, given persistent pain can’t be objectively measured either directly or indirectly (Tuck, Johnson & Bean, 2019), will question the motives of a person who doesn’t recover. And therein lies our problem.

In our societies, medical practitioners are pseudo priests in many ways. The word of a doctor holds a great deal of weight: medical certificates, death certificates, oh and judgements about diagnosis and recovery. When it comes to insurers, the opinion of a doctor is used to verify that a person really has the problem they say they have, and can then continue receiving payment. The problem with pain is, yet again, having no direct objective measure of pain. The doctor is assumed to have special powers to detect whether a person really has pain – and yet there is considerable evidence that many medical practitioners have very little training in pain and even less in persistent pain in their training (Shipton, Bate, Garrick, Steketee, Shipton & Visser, 2018).

How is the term “secondary gain” experienced by the person living with persistent pain? Lang, Igler, Defenderfer, Uihlein, Brimeye & Davies (2018) undertook an intriguing study of how the various ways pain in adolescents can be “dismissed” by clinicians. They report that 40% of adolescents indicate their pain was dismissed by others, with almost 30% of those individuals stating this was done by a physician (p. 664). It’s probably not surprising that this kind of dismissal happens more often to female adolescents! Their study established that no, the sense of being dismissed wasn’t an indication of adolescents being “too sensitive”, but rather, that being dismissed by either misbelief (you don’t really have this pain); minimising (you have pain but it’s not as bad as you think it is); secondary gain (you’re using this as a way to avoid something like school); and psychogenic (it’s your emotional state that’s the real problem and cause) – are all likely to lead adolescents to look for another opinion, and to feel stigmatised.

So – is secondary gain a real thing? I like to look at it through a different lens. Taking the moral judgement tone out of the equation (that belief that only people who truly ‘deserve’ help should get it), I like to look at the problem of delayed recovery through a lens of problem solving.

Yes, there can be some gains from being unwell – who doesn’t like a bit of fussing or to be excused from doing something you don’t enjoy. The question is whether these gains come at the expense of other things – and there’s pretty compelling evidence that the losses outweigh any possible gains (Worzer, Kishino & Gatchel, 2009). At the same time, telling someone “you’re just doing this because you don’t want to get better” or words to that effect is not likely to help them have any desire to change what they’re doing – it seems to shift the person towards resisting any change in how they’re coping. It’s counter-productive.

Let’s look at a few losses:

  • employment (and people DO value working for reasons other than money! – think self concept, identity, social interaction, daily routine…)
  • relationship loss (partners, family roles, friendships – some of the most profound stories I hear come from men saying they no longer have mates they spend time with)
  • emotional impact (depression, anxiety, anger, demoralisation, shame, guilt)
  • financial loss (with loss of employment and increased healthcare costs) (Worzer, Kishino & Gatchel, 2009)

What traps someone into these losses? What might maintain someone’s helplessness and demoralisation? Pain, of course, but so too does shame; stigma from time away from work (employers want to know if you have a “bad back” – then run a mile); lack of confidence about capabilities (am I reliable? can I be counted on?); disability (there are some things I cannot do); limited communication (how do I ask for help?) and a myriad of other things. For the avoidance of doubt, people do not magically “get better” once they obtain their insurance payout (Fishbain, Rosomoff, Goldberg, Cutler, Abdel-Moty, Khalil, et al, 1993).

What can we do?

  1. First do no harm, that means avoiding moral judgements about motives for ongoing disability. It doesn’t help and does harm.
  2. Second, begin working on the actual problems the person is experiencing – things like building consistency in activity levels; improving communication skills; increasing confidence.
  3. Third, start addressing the social stigma associated with persistent pain. This means taking a long, hard look at ourselves as clinicians, and at our workplaces and social scenes, and insurers or funders.

Why do we run from the conversation that yes, pain does persist for a good number of people? Why don’t we acknowledge that even the best treatment in the world may not reduce pain – and that this is not the person’s fault for not trying?

This doesn’t mean researchers and clinicians should stop searching for pain reduction approaches – it does mean giving those who are not helped the chance to view living well with pain as a viable option.

Bradby, H. (2009). Defining health, defining disease. In Medical sociology: An introduction (pp. 51-64). London: SAGE Publications Ltd doi: 10.4135/9781446211724.n4

Fishbain, D. A., Rosomoff, H. L., Cutler, R. B., & Rosomoff, R. S. (1995). Secondary gain concept: a review of the scientific evidence. The Clinical journal of pain.

Fishbain, D. A., Rosomoff, H. L., Goldberg, M., Cutler, R., Abdel-
Moty, E., Khalil, T. M., et al. (1993). The prediction of return to
the workplace after multidisciplinary pain center treatment.
Clinical Journal of Pain, 9, 3–15.

Shipton, Elspeth E, Bate, Frank, Garrick, Raymond, Steketee, Carole, Shipton, Edward A, & Visser, Eric J. (2018). Systematic review of pain medicine content, teaching, and assessment in medical school curricula internationally. Pain and therapy, 1-23.

Tuck, Natalie L., Johnson, Malcolm H., & Bean, Debbie J. (2019). You’d Better Believe It: The Conceptual and Practical Challenges of Assessing Malingering in Patients With Chronic Pain. Journal of Pain, 20(2), 133-145. doi: http://dx.doi.org/10.1016/j.jpain.2018.07.002

Worzer, W. E., Kishino, N. D., & Gatchel, R. J. (2009). Primary, secondary, and tertiary losses in chronic pain patients. Psychological Injury and Law, 2(3-4), 215-224.

Coronavirus (COVID19), catastrophising – and caution


I don’t often leap aboard a popular topic and blog about it, but I’m making an exception right now because, although COVID19 is new – catastrophising is not.

There are a number of people who really do not like the term “catastrophising”. There are comments that this is a pejorative term, used to deny the validity of a person’s experience. That it means the person is exaggerating or being melodramatic or in some way not believable.

But as I read the many, many headlines about COVID19, including the international toilet paper frenzy, reading about Vitamin C or “anti-inflammatory foods” to combat it, I even saw a serious post about using hands-on therapy to “shift the toxins”…. And I wonder whether we can take a good hard look at ourselves and our response to this virus.

Firstly, getting accurate information about COVID19 has been difficult. There are some authoritative sources “out there” but they’re not necessarily the most sexy sites to visit. Not many memes coming out of our Ministry of Health in New Zealand! Much of the information we read on a daily basis is in the general news media, giving a “personal story” slant on “what COVID19 means”. Some really good information coming from our politicians in NZ – but also some scaremongering from the political opposition.

Does this sound familiar? Where does the good, accurate and evidence-based information about persistent pain come from? And in the absence of readily accessible and “memeific” information, where do people go to learn about pain?

Secondly, it’s not the virus itself that’s causing the majority of trouble for people – except for the small percentage for whom the virus is deadly, mainly because of comorbidity, and health vulnerability. People who are older, already have immune compromise, and who are not able to access good healthcare are most at risk. The rest of us are experiencing the fallout of containment measures, economic insecurity, and lack of toilet paper. Sorry, couldn’t resist that last one. Seriously, most of us are being affected by the cancellation of meetings, by the need to self-isolate, by travel restrictions, by people having less money to spend because suddenly their jobs are less secure – watching my savings melt day by day…

Sounds quite similar to the experiences of people with persistent pain: often it’s not the pain itself that’s so awful, but the effects of losing contact with people you love, of having to take medications to reduce pain that leave you feeling dreadful, of not being able to play sports or do work – the loss of income security, access to healthcare, connection with people who matter. These are amongst the most debilitating aspects of living with persistent pain, let along the pain…

If you’ve found it hard to think of anything else but COVID19. If you’ve had trouble taking your mind off how you’re going to get by if patients can’t come to see you because they’re worried about giving you COVID19, or of catching it from you – that’s rumination, or brooding on it.

If you’ve caught yourself heading to the supermarket to get some extra pantry staples “just in case”. If you’ve found yourself checking in to see what your local health authorities are recommending. If you’ve been wondering if you should shut your business down for a while – and then been wondering what you’re going to do for a income if you do that. If you’ve looked up your bank balance and wondered what you’re going to do if your kids are off school for the next month, while you’re meant to be at work and there’s no-one to look after them…. you’re magnifying, or estimating that the demands of this situation might well exceed your current resources to deal with it.

If it all feels a bit overwhelming and you’re not really sure what to do next. If you’re feeling pretty stuck and getting a bit panicky. If this feels just way too much to handle – that’s hopelessness, or feeling really overloaded.

And each of these three clusters of cognitions, emotions and behaviours are part of the catastrophising construct.

Do they feel normal to you? Do you think you’re exaggerating? Do you think your reaction is over the top? No? Well you’d be (generally) quite right (except maybe the toilet paper hoarding… that’s just weird). Thinking the worst is normal in the face of uncertainty. Some commentators and researchers believe it’s one way we learn to convey our need for social support (Bailey, McWilliams & Dick, 2012; Lackner & Gurtman, 2004; Thorn, Keefe & Anderson, 2004).

At the same time, I want to take a pragmatic and contextual look at catastrophising.

From a pragmatic perspective, right now it’s completely appropriate to be a bit discombobulated by COVID19. And many of us have a lot of things to consider over the next few days/weeks as the situation changes on a daily and even hourly basis. The things we’re doing right now to plan for the worst are largely useful. That’s the point of being able to catastrophise – in the right context, in a rapidly evolving health and economic crisis, being able to consider the various futures and put plans in place to deal with them is probably a good thing. That’s the action part of the catastrophising construct.

The difficulty NOT checking your news media feed, and feeling a bit overwhelmed by it all seems to be a fairly reasonable response to an unreasonable situation. Logic, right?

So, from a pragmatic perspective right now, in the face of uncertainty, most of us are doing exactly what has got humans out of trouble many times in our history.

Now, what if we shift the context to 24 months in the future. COVID19 has now been largely contained, a vaccine is available, the virus hasn’t evolved, and while the economy is slowed, it is gradually picking up. What if, at that time, we have a friend who is still nervously scanning the headlines for the latest information on the virus? What if that friend is still stockpiling pasta and toilet paper and hand cleanser? What if that friend is still feeling like there’s not much they can do except hunker down and hide?

Now, my guess is that many of us would think this is being a bit extreme. Maybe even a bit OTT. Especially given that there’s likely to have been a LOT of media coverage of the COVID19 vaccine, and most economic activity will be returning. We might begin suggesting (gently) to the person doing the stockpiling that maybe it’s not necessary to keep on doing so. We’d think it’s a good idea to give them the new information about COVID19. We’d probably suggest that although they’re freaking out, maybe it’s time to reconsider the threat.

Context matters – catastrophising can be useful right now. In 24 months: not so much. New information will likely help us take a more realistic look at what’s going on with COVID19. It’s not that individual people won’t be personally affected if they get sick, but probably the crisis that’s happening right now will be over.

What about the validity of the person’s emotional response to their feared situation? Would we be dismissive? I hope not – because anyone who is still freaking out about COVID19 in 24 months time is still in distress! But we might be more willing to share the good news about recovery with them, so they don’t continue feeling overwhelmed and distressed. We’d not be likely to let them carry on thinking the worst, and we certainly wouldn’t be telling them their response is perfectly valid and appropriate for the threat.

What of the person experiencing pain and thinking the worst, feeling pretty awful and hopeless? Would we support them to stay in that highly distressed state? Would we say “there, there, you’re really feeling bad, aren’t you, here’s a tissue” – and walk away? Would we hesitate to suggest that perhaps they’re magnifying the problem and that they might have some other options?
Think about it. Catastrophising is a well-validated and studied construct. Hundreds of studies have shown that catastrophising is associated with poorer outcomes in so many situations – childbirth, knee replacements, hip replacements, multi-trauma orthopaedics, discomfort during internal atrial cardioversion, length of hospital stay after knee replacement, use of medications – on and on and on.

Catastrophising gets a bad rap. And woe betide anyone who TELLS someone “you’re catastrophising” because you seriously deserve a slap. Sheesh! But take a moment to consider the adverse impact on the person of thinking the worst… sleepless nights, endlessly checking their body, feeling overwhelmed and overloaded, having trouble thinking of anything else, perhaps anxious and depressed… this is not a recipe for recovery.

Call it what you will – over-estimating the threat of something, and under-estimating your resources can act as a galvaniser for preparation and action in the short term and in the context of uncertainty. When there are ways to move forward, and the threat is maybe not so great as you thought, and maybe you can do something to help yourself – then it’s probably time for us to show strong compassion. That’s compassion that cares enough to have difficult conversations, that helps another person consider their response in light of new information, and is willing to be there to help the person re-evaluate their next best steps.

Keep safe. Keep your social distance. Wash your hands. Don’t go out if you’re sick. Be sensible with the toilet paper.

Bailey, S. J., McWilliams, L. A., & Dick, B. D. (2012). Expanding the social communication model of pain: are adult attachment characteristics associated with observers’ pain-related evaluations? Rehabil Psychol, 57(1), 27-34. doi: 10.1037/a0026237

Lackner, Jeffrey M., & Gurtman, Michael B. (2004). Pain catastrophizing and interpersonal problems: a circumplex analysis of the communal coping model. Pain, 110(3), 597-604. doi: 10.1016/j.pain.2004.04.011

Thorn, Beverly E., Keefe, Francis J., & Anderson, Timothy. (2004). The communal coping model and interpersonal context: Problems or process? Pain, 110(3), 505-507.

Cannabis questions… so many questions!


Recently I wrote a summary of my readings around cannabis for pain. It’s a hot topic in New Zealand because we’re holding a referendum on cannabis law reform next year, and as expected, all the lobby groups are out in force! My interest is sparked because so many of the people I work with as patients also use cannabis – and the evidence from RCTs is pretty poor. And YET as a recent study colleagues and I carried out with people who have spinal cord injury and neuropathic pain, cannabis is something that holds appeal, and interestingly, seems to provide some useful effects.

The study we conducted (see it here: https://rdcu.be/bTuup) was a qualitative investigation of people with spinal cord injury who used and found cannabis helpful.

We found that people mainly trialled “conventional” pain relief such as gabapentin, pregabalin, nortriptyline, amitriptyline, and a range of opioids before they started testing cannabis and derivatives. The side effects and poor effect on pain of these pharmaceuticals have been well-documented so I wasn’t at all surprised to hear our participants describe feeling “foggy”, “unable to think”, and limited effect on their pain. This is common because neuropathic pain is such an extraordinary problem – there’s no single mechanism involved, there’s a cascade of effects, many of them in the brain and that means drugs effective on on those mechanisms are also likely to have side effects on cognitive alertness.

Our participants (and remember that cannabis is currently illegal in New Zealand but widely available in the hidden green market) researched their options carefully. They tried various forms of cannabis, often erroneously believing that CBD-heavy forms are (a) easy to identify from phenotype and (b) have an effect on pain. This isn’t the case – it’s the THC-CBD combination that appears to have greatest effect, with the THC being the heavy lifter when it comes to pain reduction.

Not only did our participants try a range of cannabis plants, they also tried various ways to use the product. Vaping, smoking, oil capsules, canna-chocolate, canna-cookies, chopped up in a salad, rubbed on in an ointment – virtually every route possible!

Importantly, every one of our participants denied wanting to feel stoned or high. In fact, they said that was the opposite of their intention – after all, if they wanted altered consciousness they all had access to prescribed medications that could do the trick! No, our participants wanted to do what we all want: take part in their own lives on their own terms. They wanted to participate in family life, do the shopping, play with their kids, just to function.

So, did it work? Well here’s where things get analytically tricky. Yes, almost all participants said cannabis acted quickly, alleviated their pain and gave them good sleep. BUT they also said their pain was altered, changed – they could more easily distance themselves from their pain. So was reduced pain intensity the critical effect, or was it more about feeling differently towards the pain? One participant described being able to “get in the zone” to meditate more easily. And from my perspective, being able to sleep better may itself provide important benefits on pain reduction (Kukushin & Poluektov, 2019).

So my question is whether pain intensity is the right metric in studies examining cannabis for pain relief? RCTs show very small effect sizes of cannabis/THC+CBD on pain intensity, and the research quality is pretty dismal (Campbell, Stockings & Neilsen, 2019).

If cannabis doesn’t reduce pain terribly much, then why are people so passionate about having it as an option? And why do they say it helps? This, my friends, is the real question I think we need to be answering.

Our study showed that participants reported doing more. And isn’t the reason for prescribing analgesia precisely so that people have less pain – and can do more? Our study also hinted at something else important: people using cannabis chose when, where and how they used this drug. To me this is something rarely discussed in pharmaceutical research. CHOICE allows people to make their own decisions. Making a decision for oneself is an important concept in New Zealand – autonomy, self efficacy, self determination. For people from whom so many freedoms have been lost (independent mobility, self cares, cooking, financial independence) being able to choose how to use a drug that alters pain even just a little is an important point.

When digging more deeply into the experiences our participants had when taking cannabis, I was struck by some intriguing points. Most acknowledged that while pain changed, it didn’t disappear. The effect was rapid when the product was vaped, or smoked. Dose didn’t escalate. There was a ritual aspect to using it – the same routine every day. There weren’t high expectations that it would help initially, but they grew quickly once participants tried it. All of which leads me to wonder at the influence of the meaning response (especially when people favoured what they thought were CBD varieties, when CBD isn’t as effective on pain as it is on anxiety).

Some additional points: many of our participants had to navigate a green, underground market. One with which they were unfamiliar and often uncomfortable with. Supply was erratic and fraught with concern about things like traveling with cannabis and cannabinoid products, the fear of discovery, the need to encounter people who are working on the wrong side of the NZ law. Supplies may, or may not, be pure or contain what the consumer wants. Many of our participants had never tried cannabis before their spinal cord injury. Information, accurate information, especially from health professionals, was scarce – and yet many medical practitioners were giving at least tacit approval (in an information vacuum). Our participants said they didn’t rely on what they were told by health professionals: they’d rather believe the grower, the naturopath, their friends, the internet.

All of these things should give health professionals, and law-makers, some food for thought. An underground market means no regulation. No regulation means cannabis is off topic for health educators. Absence of quality information means risks as well as benefits are unavailable. Lack of trust emerges when those who are usually respected for their opinions cannot, or will not, provide clear direction. And our medical practitioners may have trained in the days when popular belief was that cannabis is a ‘gateway’ drug to harder, more dangerous ones. At the very least, the attitudes towards people who use cannabis recreationally has infused our society such that to call someone a “stoner” is equivalent to calling them a “loser”.

For what it’s worth, I do not currently support medical prescribing of cannabis the plant. I think doctors need to know the effects, side effects, interactions, indication, doses, and contraindications of a drug before they put their signature on the line. After all, their responsibility is “first do no harm”. Yes I know cannabis is thought to be a safe drug – but there are adverse effects, the active components do interact with other drugs, and when it’s unknown how much to take, or the best route for administration, then I think it’s unfair to place that burden on a medical practitioner. Does this mean I think cannabis should remain illegal? Not at all! The current legal situation is absolutely doing harm. Regulation, information and maybe allowing people to make their own informed decisions about cannabis might be a better option. After all, alcohol is an analgesic – but we don’t march down to our doctors asking for a prescription for gin and tonic, now do we? We don’t need to because alcohol with all its harms is legal.

Where do we go from here? I think there’s merit in at least two questions being explored. (1) What is the effect of cannabis on pain – not on intensity, but on the experience of pain? Does cannabis help people achieve a meditation state? Does cannabis help via reduced anxiety? Does cannabis help via improved sleep? and (2) How does cannabis use influence participation? Is it through being able to choose when, where, and how cannabis is used? Is it indirectly through reduced anxiety?

And of course, if much of the effect is via a meaning response, what does this tell us about how we can harness our own endogenous opioid and cannabinoid systems? Can we do it without needing to use agents like cannabis?

Campbell, G., Stockings, E., & Nielsen, S. (2019). Understanding the evidence for medical cannabis and cannabis-based medicines for the treatment of chronic non-cancer pain. European archives of psychiatry and clinical neuroscience, 269(1), 135-144.

Kukushkin, M. L., & Poluektov, M. G. (2019). Current Views on Chronic Pain and Its Relationship to the State of Sleep. Neuroscience and Behavioral Physiology, 49(1), 13-19. doi: 10.1007/s11055-018-0684-3

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