Why do clinicians fear telling people their pain may persist?


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

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

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

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

In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people in the Exploring Pain: Research and Meaning Facebook group to give me their account of how they were given the news about persistent pain. The themes that emerged were:

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

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

Here are a few questions:

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

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

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

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

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Tough topics to talk about


I was involved in a Facebook discussion about intimacy and sexuality and pain, and I was struck at how tough people find it to raise this kind of topic with a new person seeking help. So… I thought I’d do a series of very brief, very introductory talks on ways I’ve used to broach tough topics.

Before I begin, though, I’d like to frame my discussion by sharing my “therapy viewpoint” or the values I try to integrate in my work.

  1. People are people, so it’s OK to be a person too. What I mean by this is that therapists can sometimes feel they have to be “perfect” and know everything and say the right thing and never fumble around for words… And as therapists we can, as I’ve written recently, “other” the people we’re trying to work with. Othering is where we identify the other person we’re communicating with on the basis of their differences from us – and may inadvertently elevate the characteristics we have – while using those other characteristics to define the other person in terms of what they’re not. When I think about being a person, I mean that while I’ve learned a lot, listened a lot to stories, had my own experiences and keep learning – in the end I can’t elevate myself in my clinical interactions. I’m not the expert in this person’s life – they are – and they have had a lifetime of being them and arriving at decisions that make sense at the time, although like me they may not be aware of unintended consequences of those decisions. So, we’re equals, but with particular roles in our interactions.
  2. People usually have a few clues about what to do – but they’re ambivalent about doing them. This means that my job is to help them identify what they already know, ask to offer new ideas, and then guide them to make their own mind up about what to do next (ie, resolve their ambivalence). Sometimes I do know some things from my experience and learning and perhaps the other person hasn’t yet come across those ideas – but I need to respect their readiness to look at those options. We know that ideas a person has thought of for themselves seem to stick more than those “implanted” ones, AND the process of discovering options is a skill that will enhance self efficacy and be a lifelong skill, so the process of discovery may be more useful than any particular “answer”.
  3. Deeply personal material is rarely discussed voluntarily – people need to feel safe, not judged, and valued as people before they’re willing to share. At the same time, if we never ask about some topics, they’ll never be talked about – so as the “controller” of a clinical discussion we need to be willing to ask the tough, sensitive questions. I suspect our careful avoidance of tough topics arises from our own worries: will we get it right? will they be OK about us asking? will we know what to do if they answer? how will we deal with the emotions? is this going to take too much time out of my session? Like any clinical skill, it’s our responsibility to learn to develop self regulation so we can deal with awkward topics. Self regulation is in part about managing our personal emotional and cognitive responses to situations. Just like we had to get over ourselves when we learned examination techniques (remember your first anatomy labs?), we need to get over ourselves when we enquire about tough topics.
  4. People generally don’t make dumb decisions, they making the best decisions they can given the information at hand. Judging someone critically for having got where they have with health, pain, exercise, daily life, mood, drugs, whatever – reflects our values and our beliefs and priorities. Who says we wouldn’t make those same decisions if we’d lived the lives of the people we’re seeking? In my book, judging someone for making a different decision from me when I’m seeing them clinically suggests taking some time out and examining motives for doing this work. Nobody gets up in the morning and says “I’ll just go out and get fat today.” What happens are a series of small decisions that seem fine at the time, being either unaware of the consequences, or valuing something else. We all do this, so stop the judging!
  5. Most people with persistent pain don’t get heard. Oh they tell their story a lot – often the abbreviated one that cuts to the chase about the events leading to persistent pain and thereafter. What doesn’t get heard is what it feels like, the deepest fears, the endless questioning “am I really that bad? am I just using this to get out of doing things?” all that self-doubt, exacerbated by insensitive statements from people around them, particularly clinicians. Giving people time to talk about their main concerns, to validate that it’s OK to feel this way, that it’s common and unpleasant and real, gives people an opportunity to trust. How we let someone know we’ve heard them lies in our response to what they say: reflecting your understanding of their story, pausing to allow the person time to think and express themselves, and summarising the key points to check out that we’ve heard them accurately, these are skills we can develop.

I’m sure I have other values woven into my practice, but these are my key ones. Being real, nonjudgemental, respecting the person’s own capabilities, giving people time and bearing witness to their story, and getting good at sitting with my own discomfort – not the usual kind of skills you learn in undergrad training!

So over the next few weeks I’ll post some brief videos of some of the ways I approach tough topics.

BTW if you’re in Melbourne (or nearby) this is the course I’m running with the amazing Alison Sim – all about communication!

Seminar – “Better Communication For Better Outcomes”
Date: Sunday, 17 March 2019 from 09:00-17:00
Featuring: Bronnie Lennox Thompson and Alison Sim
On Behalf of: Beyond Mechanical Pain

“Spend a day exploring the value of communication in a clinical setting and how we can implement better ways of communicating with your clients:

◾ Motivational Interviewing 
◾ Cognitive behavioral therapy 
◾ Acceptance and Commitment Therapy (ACT) 
◾ How we define “success” in the clinic 
◾ Functional outcome measure to assess our client’s progress 
◾ Workshop style activities to practice implementing some different communication approaches “

FB Event: https://www.facebook.com/events/242714736618057/

Booking Page: 
https://www.trybooking.com/book/event…

Cost:
Students – $165
Other Practitioners – $330


Ways to avoid “othering”


After my last post on “othering” I thought I should write something about what we know reduces the distancing that othering produces. To refresh your memory, othering is what happens when we identify positive characteristics about ourselves and simultaneously identify the absence of these positives in another person. Othering is a common part of any interaction but it seems to become less helpful as views become more polarised.

Lehti, Fjellman-Wiklund, Stalnacke and colleagues (2016) describe “walking down ‘Via Dolorosa'” as the “way of pain and suffering… from primary healthcare to [a] specialty rehabilitation clinic.” This depiction also captured the way gender and sociocultural context influenced that journey: chronic pain is a ‘low status’ illness (especially compared with high status diseases like cancer, heart disease, orthopaedic problems), while those patients with higher education and similarities to treating clinicians were viewed as “easier to interact with”. This study provides an insight into the norms expected as part of “being a proper patient – ready for change”.

Norms are a part of culture, assumptions about what “is done” in a particular context. Just as health professionals learn to “be professionals”, people seeking help for their health are also expected to behave in certain ways. Othering is, as I’ve indicated above, a normal or common part of interactions – some authors suggest we need an “other” in order to for our self to “know itself and define its boundaries” (Krumer-Nevo, 2012). At the same time, once the “other” is identified in less positive terms than “self”, it’s far easier to distance oneself from the other person.

One step towards reducing the distancing between “us” as health professionals and “them” seeking help is to create moments of “belongingness”. What this means is using overt means to help people feel welcome. In New Zealand, this may mean ensuring signs are written in both Maori and English. For people with pain, it may mean explicitly indicating to people with pain that it’s OK to stand up and move around during an initial assessment.

Another way is to raise the idea of the person living with pain as an expert. “Expert?” I hear you say…Yes, expert in “what it is like to be this person living with this pain in this context”. For us to demonstrate our understanding that the person living with pain is the expert on his or her experience, we need to provide safe and welcoming opportunities for the person to tell us what it is like. Narrative medicine, if you like.

Tonini and Chesi (2018) used Charon and Remen’s definition of narrative medicine “a way of dealing with the disease through narration, aimed at understanding the complexity of the patient that will no longer be seen as a set of objective data but as a unique individual with needs” in a study of the stories given by people living with migraine. The stories were of people with a chaotic narrative where migraine was a mystery, full of disorientation and few solutions, moving through to restitution where knowledge and efffective treatment allowed the person to progress. Other narratives were “stable” leading to improvement in understanding and management, and regression, where people gave up and remained disoriented.

How might this help us reduce our sense of “othering”? In one way, learning to hear what people have to say should be fairly simple for health professionals. We’re trained to listen carefully. But what we’re often focusing on is some sort of diagnosis: “what is going on here, what’s going wrong, what’s the pathology?” Hearing another’s narrative is a different process: this involves empathising with, understanding the journey from feeling unwell to seeking help, beginning to acknowledge the similarities between this person and ourselves. How might we respond to illness if we were faced with the same circumstances? the same prior history? the same choices?

Lajos Brons, philosopher (Brons, 2015), argues that charity, or the “reasonableness argument” could help us to deal with othering. Reasonableness is an assumption that the other person has rational, coherent, and true reasons for doing and saying what they do – even if, at first, we may not discern the underlying reasons. By invoking a charitable interpretation on another’s actions, we are in turn asked to question our own preconceptions, our assumptions about the reasons the person did what they did.

Imagine that kind of humanity being brought into our judgements of people who are apparently “lacking motivation”, or “seeking secondary gain”, or “noncompliant”?



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

Krumer-Nevo, M. (2012). Researching against othering. Qualitative inquiry and the politics of advocacy, 7.

Lehti, A., Fjellman-Wiklund, A., Stalnacke, B.-M., Hammarstrom, A., & Wiklund, M. (2017). Walking down ‘Via Dolorosa’ from primary health care to the specialty pain clinic-Patient and professional perceptions of inequity in rehabilitation of chronic pain. Scandinavian Journal of Caring Sciences, 31(1), 45-53.

Tonini, M. C., & Chesi, P. (2018). Narrative medicine, an innovative approach to migraine management. Neurological Sciences, 39(Suppl 1), S137-S138.

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.

How are you going with your resolutions?


It’s seven days into the new year, and if you’ve made New Year’s resolutions I’d like to bet that it’s around now that your resolve is starting to fade… Don’t worry, I’m not going to nag! I am going to point out just how difficult it is to stick with a resolution, goal, action, new habit – whatever you call it.

And take a moment, if you’re a health professional. Just stop for a moment and think about the resolution, goal, action, new habit you’ve just set with your last patient. What are the chances that person will stick with that goal for the week?

Add in the complexities of, perhaps, competing goals or actions set by other clinicians seeing that person concurrently. The thought records, or mindfulness practice, or the planning and prioritising and pacing. Add in the usual daily life activities that need doing: the washing, cooking, shopping for groceries, paying the bills, filling the car with gas, spending time with family (not just any old time, but quality time). And work. And remembering to take medications (even the ones that make you feel drowsy or nauseous).

And not sleeping, finding it hard to rest because pain gets in the way.

And guilt perhaps because why is this person not getting better?

Is it any wonder that the people we try to help seem “unmotivated”? Or that they appear not to be “adherent”?

I keep coming back to something that bothers me about our attitudes towards the people we try to help. There continues to be a sense of “them” and “us”, with “us” being all that is good, proper and right, and “them” being, because we’re humans who like dichotomies, the opposite. After all “they” are seeking help from “us” which automatically puts “us” in the authoritative position.

Now before I get harangued by people saying “oh but not me”, I wonder what it would be like to record yourself in conversation with your colleagues. You know the time at your breaks where you meet around the water cooler or the coffee pot, and you do a mutual moan about work. Check in with your discussion: how do you refer to the struggles of the people you see? Is there a chance, even inadvertently, to use a “should” or “must” word or two? Do you ever think not just about the things you do with the person you’re working with, but the things other clinicians are also doing?

Enough finger pointing. What can we do to (a) shift our own attitudes and (b) help the people we see stick to the things we hope will help them?

Attitude shifts

It’s a tough one. Shifting an attitude is difficult, in part because we don’t recognise we hold attitudes because they seem “normal” or commonplace – and the more ingrained or deep-seated they are, the more difficult it is for us to see them. Attitudes are complex – possibly partly based on memory and partly generated in the moment-in-time (Albarracin & Shavitt, 2018). They also change with difficulty – being in contact with “others”, for example, has been shown to influence attitudes positively, while even imagining positive contact showed about 14% of participants were more likely to explicitly state positive attitudes (Miles & Crisp, 2014). Overall, changes in attitudes based on an intervention or a message seems to have a small effect (d = 0.22) – but these seem to be quite durable changes.

But something affect our attitudes: if we argue for our beliefs, we’re likely to become more stuck in our original beliefs, we add new information to our explanations but don’t readily throw out old information. To shift attitudes, new information needs to provide a “causal alternative” to explain our mental models.

OK, so changing our own attitudes is tough but we can counter the stickiness of our attitudes by considering a few things:

  • Values – linking specific actions to important values helps us to shift our attitudes. For example, we could begin to value why we started to work in health: was it job security? desire to help people? because people are constantly changing and different and it’s an exciting intellectual challenge? Whatever the value, we can begin altering the way we act towards the people we see to embrace the similarities between “them” and “us.
  • Goals – we all vary in the level of general action we’re in. We range from being focused and both moving and thinking quickly to being completely inactive (such as when we’re asleep and not dreaming). Research has shown that if we want people to consider a new attitude, we need to frame this in the context of “being active” (Albarracin & Handley, 2011). Perhaps we need to think of the active part we play in pain rehabilitation – and consider the effects of our attitudes accordingly.
  • Language – metaphors are persuasive, and seem to affect the way our attitudes are formed as well as what we do about them. Metaphors provide a way for us to become more psychologically distant from a concept, or more aware of complex psychological constructs. We can use metaphors when we think about how we want to work with people: are we ‘advisors’ or ‘coaches’ or ‘instructors’? Do we work collaboratively – or do we expect obedience? Do we have a partnership, or do we “direct” treatment?

Helping people stick with actions/goals/new habits

There have been mountains of research papers on behaviour change within a rehabilitation context. We’ve all been drilled on the idea of SMART goals (whatever the SMART acronym is meant to stand for!). We are exhorted to “set goals” from the first visit, and in some situations (New Zealand’s ACC rehabilitation process for example) obligates us to “set goals” which then provide a marker for whether treatment has been successful or not. Problem is, as Gardner, Refshauge, McAuley, Hubsher, Goodall & Smith (2018) found, we tend to set goals that we want, in collaboration with the people we’re working with, yes, but not necessarily the goals the person wants. In fact, their study showed that the treatment orientation of the clinician (all physiotherapists in this instance) predicted the degree of involvement from the person, with those therapists holding a stronger biomedical model being less likely to incorporate the person’s own goals.

Now here I’m going to put some of my clinical experience to work rather than focusing on research, though I hope that what I’m suggesting ties into researched ideas! Locke and Latham (1990) are the godfathers of formal goal setting theory, albeit mainly in an organisational development context, however they have provided much of the information we use when working with the people seeking our help. If you’re looking for more information on goal setting, you should probably begin with their material.

What to try:

  • Begin with the end in mind. What does the person want to be able to do? Be wary of goals incorporating things no-one can completely control, such as “be able to win a race” – because someone else, on that day, may be faster that this person. Similarly, I’m wary of goals that talk about “pain-free” or “without flare-up” because we’re not always going to achieve this. Don’t forget to ask the person about what they want!! They probably don’t care too much about a 5 degree improvement in knee flexion – what they want to be able to do is go up and down stairs.
  • Check out importance and particularly confidence when it comes to goals. A goal that’s unimportant will likely fall out of someone’s brain because it doesn’t matter. A goal that’s too challenging will equally be avoided (often not on purpose but because we don’t really like thinking about things we fear we’ll fail at). If the goal isn’t important – tap into values and why it might matter to the person. Change the goal if the person can’t come up with a compelling (ie emotionally resonant) reason to do it. Build confidence by scaffolding support around the person – how can you make it so that the person feels they can be successful? Begin with their ideas first so you build on their sense of self-efficacy.
  • Generate actions to do rather than goals to achieve. Actions are done or not done. Dichomotous. Goals may or may not be achieved depending on a whole bunch of factors. Make the things the person needs to do simple and yes/no.
  • Reminders or cues help. It’s easy to forget to do your pelvic floor exercises after birth, right? But a whole lot easier to remember when they’re tied into every time you use the toilet! Tie the action to an existing habit like when you’re waiting for the jug to boil, you can do your mindfulness. When you’re cleaning your teeth is a good time to do some squats (try it!). Use a cellphone appointment reminder. Record when the action is done. Set a specific time of day – ahead of time.
  • Tracking actions helps keep on track. Graphs are great! Seeing your progress is reinforcing. But make this process easy – can it be done on the phone? Can it be recorded in a simple notebook? Check up on progress often. Problem solve when things don’t go the way you hope.
  • Problem solve the factors that might interfere with doing the action ahead of time. This might mean posing scenario’s – what would happen if the weather was bad? What would you do if you had visitors? What might get in the way of doing this? What could you say to the person who says “Oh come on, you can leave it for today?”
  • Have days off. Absolute goals that are very specific and must happen every single day are likely to fail, and then we fall into the “what the hell” effect – oh I didn’t do X, so what the hell I might as well not do anything. I recommend for daily actions, that we have two days a week where they don’t need to happen. You might want to plan for five walking sessions, and do them all in the first five days – and then have two days off for good behaviour, or even decide you’re on a roll, and do two extra days. Whatever, the person wins because they’ve achieved the original action.

There is no doubt that changing habits is tough. It’s even tougher when there are a lot of changes to implement. And even tougher still when the therapist sits in judgement of the person who is trying to juggle everything while not being at full capacity. I wonder if we as therapists could begin to view our work with people as a truly collaborative affair, where we recognise the incredible challenges the people we see are dealing with. Maybe our New Year’s Resolution could be “how to be a better therapist”.

Albarracın D, Handley IM. (2011). The time for doing is not the time for change: effects of general action and inaction goals on attitude retrieval and attitude change. Journal of Personality and Social Psychology. 100(6):983–98

Albarracin, D., & Shavitt, S. (2018). Attitudes and Attitude Change. Annual Review of Psychology, 69(1), 299-327. doi:10.1146/annurev-psych-122216-011911

Gardner, T., Refshauge, K., McAuley, J., Hübscher, M., Goodall, S., & Smith, L. (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.

Locke, E. A., & Latham, G. P. (1990). A theory of goal setting & task performance: Prentice-Hall, Inc.

Miles E, Crisp RJ. (2014). A meta-analytic test of the imagined contact hypothesis. Group Process. Intergroup Relations. 17(1):3–26


Five things I learned about pain this year


  1. Our definitions of pain matter more to researchers and people who like to philosophise about pain than to people experiencing pain. At the same time, definitions do matter because when the IASP definition of pain was first established, the distinction between the neurobiological underpinnings of pain – and the experience – was clear. And this matters because neurobiology is only part of the picture. (Chekka & Benzon, 2018; Cohen, Quintner & van Rysewyk, 2018; Reuter, Sienhold & Sytsma, 2018; Tesarz & Eich, 2017; Williams & Craig, 2016)
  2. The idea of “tribes” in pain and pain management is a misinterpretation of our need to work together as clinicians because pain is complex. The old argument that we’ve omitted “the bio” because we use a biopsychosocial framework for understanding pain is, frankly, ignorant. It’s also destructive because we need one another when we try to help people who are seeking our help. And even if someone has a straightforward sprain, fracture, or whatever – that sprain is happening to a living, breathing, thinking, emoting, motivated person. If we are to break down the silo thinking in pain management, we also need to learn how to work together within an interprofessional team. This means learning to speak a common language. This also means including the person with the pain as part of the team. To think that we can ignore the person and focus only on “the tissues” means we also must agree that our contribution as health professionals could be replaced by an algorithm (Gordon, Watt-Watson & Hogans, 2018; Lötsch & Ultsch, 2018; Shluzas & Pickham, 2018 .
  3. The gap between what is investigated in research institutions and both the concerns of clinicians and patients, and implementing research findings is enormous. Accusing researchers of ‘living in ivory towers’ fails to recognise that most of our active pain researchers in rehabilitation still continue in clinical practice. The gap seems to be between funding agencies (valuing high tech, high impact research) and the concerns of clinicians (often about high value, low tech, and low cost research). There are very active discussions about “how do I use this study” on social media across the board – Twitter, Facebook, LinkedIn, blogging – and these represent possibly the most important vehicles for clinicians, policy-developers, researchers and people living with pain to break down silo thinking and begin to address the factors that contribute to the knowledge translation gap. Many discussions on Exploring Pain: Research and Meaning (Facebook group) end with acknowledgement that funding systems simply do not support collaborative evidence based teamwork (Arumugam, MacDermid, Walton & Grewal, 2018; Bérubé, Poitras, Bastien, Laliberté, Lacharité & Gross, 2018; Chen, Tsoy, Upadhye & Chan, 2018; Romney, Salbach, Parrott & Deutsch, 2018; Tougas, Chambers, Corkum, Robillard, Gruzd, Howard,… & Hundert et al., 2018).
  4. The social part of pain is receiving increased research and clinical attention – and it’s a messy area of study. Social isn’t well-defined – it can mean social psychology, sociology, culture, health systems, media, feminism, political science, legislation – anything where people interact. Social psychology studies investigate things like trustworthiness, gender effects in interactions, stigma (Naushad, Dunn, Muñoz & Leykin, 2018; Sherman, Walker, Saunders, Shortreed, Parchman, Hansen, … & Von Korff, 2018; Wesolowicz, Clark, Boissoneault & Robinson, 2018), while sociology examines diagnoses and power relationships in healthcare – things like being “too young” for a diagnosis of arthritis (Kirkpatrick, Locock, Farre, Ryan, Salisbury & McDonagh, 2018) or validating the pain of menstruation (Wright, 2018) or a diagnosis of fibromyalgia (Mengshoel, Sim, Ahlsen & Madden, 2018). It seems no accident that many of the pain problems needing “validation” occur more often in women, and fail to have “objective” signs. But social means more than labeling and interacting, it’s also about community values and ideas – and how pain is portrayed by people experiencing pain, and in the media (Kugelmann, Watson & Frisby, 2018). The way WE talk about pain, and how we talk about people living with pain. How people living with pain are portrayed and how they portray themselves (ourselves). I suspect the social aspects of our experience with pain are amongst the most complex and most potent in determining suffering (loss of sense of “who am I?”) and disability (“what can I still do?”).
  5. Finally, I am encouraged by the wealth of information being shared freely, discussed passionately, and applied in many different forms around the world. I am proud to have been associated with many different groups as we – you, me, people living with pain, us – keep this topic alive and up-front. While I am no great productive scholar, I publish few peer-reviewed articles, and in the eyes of University hierarchy I am insignificant, I believe the conversations had on social media and into the real world have an impact on how we work in the clinic. If we can achieve the things we talk about, even if we achieve only a fraction of those things, we will have helped more people than we can ever imagine. I feel so privileged to have got to know some of the greatest “lived experience” advocates for greater ‘patient’ involvement in our conversations about pain. Isn’t it time we remembered the old adage “nothing about us without us”? Social media allows us to break the code of silence – and the distinction between “us” and “them” in the world of pain. After all, many of “us” are also living well with persistent pain.


Arumugam, V., MacDermid, J. C., Walton, D., & Grewal, R. (2018). Attitudes, knowledge and behaviors related to evidence-based practice in health professionals involved in pain management. International journal of evidence-based healthcare, 16(2), 107-118.

Bérubé, M. È., Poitras, S., Bastien, M., Laliberté, L. A., Lacharité, A., & Gross, D. P. (2018). Strategies to translate knowledge related to common musculoskeletal conditions into physiotherapy practice: a systematic review. Physiotherapy, 104(1), 1-8.

Chen, E., Tsoy, D., Upadhye, S., & Chan, T. M. (2018). The Acute Care of Chronic Pain Study: Perceptions of Acute Care Providers on Chronic Pain, a Social Media-based Investigation. Cureus, 10(3).

Chekka, K., & Benzon, H. T. (2018). Taxonomy: definition of pain terms and chronic pain syndromes. In Essentials of Pain Medicine (Fourth Edition) (pp. 21-24).

Cohen, M., Quintner, J., & van Rysewyk, S. (2018). Reconsidering the International Association for the Study of Pain definition of pain. Pain reports, 3(2).

Gordon, D. B., Watt-Watson, J., & Hogans, B. B. (2018). Interprofessional pain education—with, from, and about competent, collaborative practice teams to transform pain care. Pain Reports, 3(3).

Kirkpatrick, S., Locock, L., Farre, A., Ryan, S., Salisbury, H., & McDonagh, J. E. (2018). Untimely illness: When diagnosis does not match age‐related expectations. Health Expectations.

Kugelmann, R., Watson, K., Frisby, G (2018). Social representations of chronic pain in newspapers, online media, and film. Pain, in press.

Lötsch, J., & Ultsch, A. (2018). Machine learning in pain research. Pain, 159(4), 623.

Mengshoel, A. M., Sim, J., Ahlsen, B., & Madden, S. (2018). Diagnostic experience of patients with fibromyalgia–A meta-ethnography. Chronic illness, 14(3), 194-211.

Naushad, N., Dunn, L. B., Muñoz, R. F., & Leykin, Y. (2018). Depression increases subjective stigma of chronic pain. Journal of affective disorders, 229, 456-462.

Reuter, K., Sienhold, M., & Sytsma, J. (2018). Putting pain in its proper place. Analysis.

Romney, W., Salbach, N., Parrott, J. S., & Deutsch, J. E. (2018). A knowledge translation intervention designed using audit and feedback and the Theoretical Domains Framework for physical therapists working in inpatient rehabilitation: A case report. Physiotherapy theory and practice, 1-17.

Sherman, K. J., Walker, R. L., Saunders, K., Shortreed, S. M., Parchman, M., Hansen, R. N., … & Von Korff, M. (2018). Doctor-patient trust among chronic pain patients on chronic opioid therapy after opioid risk reduction initiatives: A Survey. The Journal of the American Board of Family Medicine, 31(4), 578-587.

Shluzas, L. A., & Pickham, D. (2018). Human Technology Teamwork: Enhancing the Communication of Pain Between Patients and Providers. In Design Thinking Research (pp. 313-325). Springer, Cham.

Tesarz, J., & Eich, W. (2017). A conceptual framework for “updating the definition of pain”. Pain, 158(6), 1177-1178.

Tougas, M. E., Chambers, C. T., Corkum, P., Robillard, J. M., Gruzd, A., Howard, V., … & Hundert, A. S. (2018). Social Media Content About Children’s Pain and Sleep: Content and Network Analysis. JMIR Pediatrics and Parenting, 1(2), e11193.

Wesolowicz, D. M., Clark, J. F., Boissoneault, J., & Robinson, M. E. (2018). The roles of gender and profession on gender role expectations of pain in health care professionals. Journal of Pain Research, 11, 1121.

Williams, A. C. D. C., & Craig, K. D. (2016). Updating the definition of pain. Pain, 157(11), 2420-2423.

Wright, K. O. (2018). “You have Endometriosis”: Making Menstruation-Related Pain Legitimate in a Biomedical World. Health communication, 1-4.

Mind your language!


“Words are pale shadows of forgotten names. As names have power, words have power. Words can light fires in the minds of men. Words can wring tears from the hardest hearts.”
― Patrick Rothfuss, The Name of the Wind

So much has been written about language, and I am not a linguist. I am, however, often accused of being pedantic because I like to use words with precision.

In the world of pain rehabilitation/management/treatment/care (see what I did there?!) certain words seem to spark a huge debate. Words like “pain”, “nociception”, “suffering”, “harm”, “avoidance”, “catastrophising” all get a regular hammering in online discussions. Less frequently, words like “guru”, “expert”, “master”, “authority”, “sage” reach the discussion boards and in the same way as “pain”, elicit an almost visceral response.

Before I begin commenting in earnest, I want to preface this piece by making it absolutely clear that I am not commenting on any particular person, organisation, group, business, or endeavour. Please read the whole piece thoroughly before commenting!

I’m not an expert, authority, sage, master or guru. I have years of experience and lots of learning, I’ve studied a lot, I’ve worked with lots of people living with pain, and I’ve worked across a wide range of settings – but they’re all in NZ. I work in an academic institution. I teach postgraduate pain and pain management from a certain perspective. I encourage my students and readers of this blog, as I do all the people I’ve tried to help, to always, always read and be critical of what I say.

I don’t know whether it’s part of growing up in the 1970’s, or it’s the religious upbringing I had, or whether it’s a New Zealand characteristic, but self promotion and the idea that I’m “more important” or more authoritative than anyone else is anathema to me. It’s probably why I give information away, and why I’m not a business owner.  Whatever the case I really dislike the idea of guruism. As a concept. As it is applied to healthcare.

When I think of the word guru, I think of someone who believes he or she knows more than normal people, someone who wants (or has) followers (disciples). It smacks of a lack of acknowledging that the more we know the more questions we have and the less we feel we actually know. The word puts the person on a pedestal.

Some people have been my gurus. People I’ve admired, wanted to emulate, who have influenced the way I think about things. I’ve put those people in a position of influence over me. I need to remind myself to be critical, to think independently, to hold different opinions if I’ve thought about the things they say. That’s not easy to do – highly charismatic people are great at influencing me, and in a field of practice where there is great uncertainty, it’s tempting to grasp what looks like an appealing concept and run with it. At this point I’m reminded of the quote: “For every problem there is an answer that is clear, simple, and wrong” (HL Mencken).

What strikes me is that guru is a term derived from Hindi (Sanskrit, actually) and according to Wikipedia and a few other etymology references, was a term accorded to “one who dispels the darkness and takes towards light, traditionally a reverential figure to the student, with the guru serving as a “counselor, who helps mold values, shares experiential knowledge as much as literal knowledge, an exemplar in life, an inspirational source and who helps in the spiritual evolution of a student.” (Thanks Wikipedia) Wikipedia goes on to say “the term is sometimes used in a derogatory way to refer to individuals who have allegedly exploited their followers’ naiveté.”

I see a couple of risks associated with identifying or being identified as a guru. The first is that we believe it ourselves. That we have the knowledge to “dispel the darkness”, and the right to “mould values… an exemplar, an inspirational source”. This can tempt us to be less aware of our own biases, to accept them or make exceptions for them. It can encourage us to think our view is “right”, to stop constantly asking ourselves those difficult questions.

The second is that our followers may do the same. Follow what we say without thinking independently. To read what we write without reading others. To forget to cross-check our work. Add to this the reality that most people who are adopted as gurus have years of experience and knowledge that underpins their superficially-simple (or should that be deceptively simple?) and readily digested approach. This experience and knowledge often can’t be replicated, or isn’t even explicit to adherents – so rather than a multi-layered and complex emergence of understanding, followers may simply pick and choose sound-bites, and apply them liberally and without the nuances the originator brought to the concept. Tell me you haven’t see this in pain rehabilitation over the years! And then, of course, comes the fighty talk and internet wars and tribalism we’ve seen so often.

The third problem or risk is that the people we try to help, those with pain, can be vulnerable to the hype. They too can believe that they “should” respond to the simple message, and if their own experience doesn’t accord with the “wisdom” of the guru, they can begin to blame themselves – and at times, be blamed by adherents.

There are undoubtedly other risks, but these are my key concerns about anyone being viewed as an expert or guru.

Every word begins with a few meanings within a certain context. Then the words grow a life of their own. Words are sociocultural – they have power despite “sticks and stones will break my bones but words with never harm me”. Words continue to acquire meaning and subtle use-changes over time. People in different parts of the world, of different backgrounds, at different ages and in different settings will use words quite differently. For me, guru is a word I really dislike, but for others it’s a legitimate term to describe themselves and their word. The thing is, whether we like it or not, the word has both good and not-so-good associations for people. And both matter. Guru might speak of “aha! here’s someone who can help”, or “a group I feel comfortable with – my tribe”, or “expert with lots of knowledge”. But it might also just as equally speak of hype, inflated ego, a need to be worshiped and collect adherents, blind allegiance.

Along with thinking hard about how I want to represent myself while writing this blog, I’ve also been pondering a list of various ways to describe pain and the neurobiological and experiential apparatus underpinning the experience.

Defining pain is incredibly difficult – while we’ve all experienced pain, we’ve never been able to share the “what it is like” to experience pain. Our personal experience of pain is within contexts we’re familiar with – for many people it really is a short-term experience, a warning of potential damage or threat to bodily integrity (and social, too), a symptom of “something else” that must be attended to, and something that will be resolved once that “something” is fixed. For others it is a stigmatising experience.

For some it’s an experience used to represent going through an ordeal and coming out the other side having learned something. For still others it’s a deeply scarring, personally disruptive experience that isolates and depresses and angers. For some it’s a mystery to be solved. For others it’s a neutral, uncomfortable yes but not distressing experience because it’s familiar and no longer understood to be representing anything much.

Most of these contextual experiences reflect appraisals of the ineffable experience, rather than distinguishing this experience from other experiences such as joy, hunger, fatigue. And I think it’s useful to remember the purpose of a definition – in the case of IASP pain definition, it has allowed researchers, clinicians, and people living with pain to acknowledge that nociception (and associated processes that contribute to our experience of pain) is not the same as pain. And that behaviours we do when we experience pain are also not pain. And that how we view or appraise our experience influences both the experience itself, and our response to it. And FWIW I use the term “it” as a placeholder for “the experience we know as pain”. 

Given that words are fluid, why on earth am I trying to argue the toss about how I view words like “guru” and “pain”? Because in this context, where people are talking with one another, clarity of meaning aids us to understand the concept we’re discussing. And because this is a particular context. And this is my opportunity to express my opinion. Readers will undoubtedly interpret what I’ve written in their own way. What I would ask is that people don’t interpret this post as having intentions I don’t have. After all, as the author, I’m probably the only person who can determine my intentions for what I write.


Expectations – and communicating


There are times when I look at the research on persistent pain and treatment, and I begin to wonder why I’m still so positive about this field! After all, it seems that although a biopsychosocial or multidimensional framework for pain has been around since the 1970’s, I’m still encountering reasonably recently-graduated clinicians who sincerely believe that whatever treatment they’ve learned is the Bee’s Knees, and Will Truly Fix All Pain. And people who firmly believe that All Pain Is X. Or Y. Or Z. And surely we should do what they say (pay the fee, get the certificate, perhaps even levels 3, 4 and 5!) and the people we see will get completely cured.

Maybe I’m just being a Grinch because it’s coming into Christmas.

Perhaps, too, we’ve all forgotten that treatments for persistent pain don’t happen in a vacuum. The people we work with have first had to recognise that their problem is something they think should be treated. Then they’ve chosen to see someone – and maybe chosen to see us, or been referred to us by someone else. These two steps in treatment response alone make an incredible difference to outcomes.

Imagine if I’m someone who thinks my lumbago is normal, something everyone gets, and don’t see it as something unusual. I might choose not to seek treatment until I’m about to embark on a long trip. I choose to see an osteopath because I think they’re more gentle than a physio (who will only give me exercises), or a chiropractor (who will hurt me!), and I don’t like needles so I avoid acupuncture. I don’t think my problem is serious enough to go see a medical practitioner and besides I think my GP will just send me to the physio.

Now imagine instead that I’m a young woman who loves to dance. I’ve had little niggles in my back before, but last night I got on the dance floor and partied like it’s 1999 (oh, that’s right, we’ve been there, done that!). Anyway I partied the night away until I slipped on some beer on the floor, landed on my butt and now my back is really bothering me. I head to my GP feeling pretty hung over and like I cannot walk because my back is SO sore.

Two reasonably common stories.

Now let’s take a look at a study looking at expectations from people seeking help for chronic pain (persistent pain). Wiering, de Boer, Krol , Wieberneit-Tolman and Delnoij (2018) examined the results of data collected from people with persistent pain. Over 2000 people took part in this study, mainly between the ages of 55 – 64. Most were women, most had been living with pain for a long time (on average 14.9 years). Most (50.7%) obtained treatment intended to reduce or stabilise (27%) their pain, and for many people the pain did stabilise (26%), or reduced to a degree (29.4% + 34% to a lesser degree). BUT, and here’s the thing: 41.8% expected a better result, while 33.3% got a better result than they thought they would.


The killer point is that although nearly 70% of people achieved or did better than they expected, and nearly 40% of patients didn’t expect very much, 30% of people were unsatisfied.

Curiously, there was little relationship between how the clinician communicated and the accuracy of the person’s expectations. It didn’t matter whether the clinicians used shared decision-making, patients felt their outcomes should be better than they were.

BUT importantly, attentive listening, having time available for the person, whether the patient trusted the clinician, and whether the patient thought the clinician had done all he or she could were important predictors of satisfaction.

What points do the authors make about communication and expectations? Well, one is that although communication is important only certain aspects of communication really rated with patients: clinicians thought “instrumental” communication was important. This is things like seeking information, asking questions of the person, asking for consent. Instead what actually helped was “affective” communication: responding to the person’s emotional subtext. Things like taking time to listen, building trust, giving people the idea that the clinician is doing all that he or she can.


There’s a caveat though, and I’ll quote directly “Low scores on the important communication aspects were related to expectations that were too high, while high scores were related to too low expectations. Apparently the perfect level of communication is somewhere in the middle. The relationship between low patient expectations and good affective communication may be a sign that it worries patients if health care providers show too much empathy and therefore come across as concerned.” (p. 6)

What can we do with this information? Well I think we can begin by recognising that helping people establish what’s important to them – what is the outcome they most value – is something often not tabled by us. We think we’re communicating clearly, but maybe not. We should also personalise treatments – help people realise that we’re not just delivering some sort of template or algorithm, but that we’re concerned about their unique needs, wants and lifestyles. We should also be warned that people seeking help from us have very high hopes that we’ll be able to achieve a lot. And of course, if we read the research, we should recognise that in general we don’t have a great track record in persistent pain. Let’s not over-promise!

I think using personalised outcome measures like the Patient Specific Functional Scale or the Canadian Occupational Performance Measure, or Goal Attainment Scaling could help us be more focused on what people want from their treatment. While pain reduction is the ideal – it’s not the only outcome! What point is there to have no pain if you’re still afraid to do things you want to do?

Wiering, B., de Boer, D., Krol, M., Wieberneit-Tolman, H., & Delnoij, D. (2018). Entertaining accurate treatment expectations while suffering from chronic pain: an exploration of treatment expectations and the relationship with patient- provider communication. BMC Health Serv Res, 18(1), 706. doi:10.1186/s12913-018-3497-8