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

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

Working with thoughts: habits take time to change

If only there was a magic wand. I could make millions out of a ‘quick fix’ to changing habits! Unfortunately my magic wand is red and glittery – and plastic. I call it my ‘self management’ wand because it reminds me that self management is no quick fix, and a good deal of the work we need to do is about helping people recognize unhelpful thoughts and behaviors that might work in the short term, but not so in the long term. Changing patterns for sleeping well despite chronic pain is no different – what might have been going on for years isn’t likely to change overnight.

Some of the thoughts that people have when embarking on cognitive behavioral therapy for insomnia can be quite unhelpful. One woman I worked with became despondent and eventually gave up because she got very irritable and felt too exhausted to carry on with sleep restriction, and told me her husband didn’t want her to stay up until she was sleepy as we had planned ‘because he can’t stand me being grumpy all the time’. She’d been having problems with sleep for four years, and we had worked on a sleep program for three weeks.

Today I’d respond a bit differently: when someone says ‘Oh but I just can’t do this’ I’d spend more time exploring how long the sleep problem had been going, and discuss the short term vs long term gains. If the problem with sleep has been going on for a long time, the difficulty from sleep restriction over a fortnight or so in order to improve sleep over the long term might be worth it. It’s worth using something like a decisional balance chart, or ‘pro’s and con’s’ chart that draws up the good and not so good of each habit that influences sleep. Habits like going to bed early after a few nights of poor sleep might help the immediate fatigue – but the probability of waking during the night is increased, which in turn maintains the poor sleep pattern. Forgoing the sleep program because of irritability or fatigue might keep the peace at home in the short term – but maintains the erratic sleep pattern that can interfere with good relationships in the long term.

If someone is raising the concern that they won’t be able to cope with excessive sleepiness during the initial phases of sleep modification, it’s worth considering introducing change over a Friday to Monday – that way the excessive sleepiness is confined to the weekend. In really challenging cases, the person might be able to take a week off work or a holiday, and time the program to commence during this time.

There is good reason not to change the planned program too much because of the person’s fears of being ‘too sleepy’. This is because one aspect of a sleep program is to evaluate the person’s fears that not being able to sleep will lead to ‘catastrophic’ consequences. By not challenging this belief, a tiny bit of doubt can remain in the person’s mind that the program won’t work in the real world – or when the person isn’t seeing the clinician.

Many people start a program but don’t manage to carry it out. This seems especially common with regard to that horrid part of sleep management: getting out of bed in the middle of the night if you’re not asleep. You’ll probably know these thoughts: ‘oh it’s so nice in bed, it’s too hard to get out of bed’; ‘maybe if I stay in bed I’ll just fall asleep, if I get out of bed I’ll just wake up properly and then I’ll never get any sleep’; ‘I’ll wake my partner if I get out of bed so I’ll just lie here and rest’.

Something worth considering is to explain to the person that at night some of the parts of the brain that help to evaluate and judge and monitor impulse control (frontal lobes) are affected both by fatigue – and by circadian rhythms. In other words, it is actually harder to reason logically at night, leading to more difficulty following through with difficult actions. By letting the person know that ‘it’s not your fault, it’s your brain letting you down’, it can help the person understand why it can be more difficult and as a result, help them apply some additional ‘push’ to overcome that tendency.

Working with catastrophic thoughts
One of the maintaining factors in insomnia is worry, or rumination. Now while there are some subtle differences between these, I’m going to treat them as the same for the purposes of this part of my discussion.

It’s common to think that being a ‘worrier’ causes insomnia – and to a certain extent, especially in the initial stages of the problem, that’s true. It’s very common for people with pain to be worried about a lot of things in the early stages of the pain problem, and what better time to think about these things than when in bed? Well, actually it’s not an especially good time, particularly in the middle of the night because it helps to maintain alertness, and more importantly, because of the problems with logical reasoning (see above). What typically happens is that thoughts just run around and around without coming to any resolution.

Once insomnia is established, self-perpetuating thoughts can maintain it. Things like ‘I’ll never get any sleep tonight’, or ‘tomorrow is going to be a write-off’. By working through these thoughts, perhaps using a whiteboard and listing the thoughts and working through to the ‘worst case scenario’ (in other words, following the catastrophic chain of thinking, we can work through to the underlying fears that have real emotional sting. Then we need to do some reality testing. Reality testing in this case involves making some estimates of how likely it is that each of these thoughts will come true. Using a percentage, each thought that has been jotted down is given a rating in terms of how probable it is that the fear will come true.

The next step is to work out how often each of the catastrophes actually DO come true. For example, if the thought is ‘I’ll never get to sleep tonight’ – how often has that actually come true? How often does the person actually get not a single moment of sleep at night? Probably the answer will be near to nil. The next catastrophe can be discussed the same way – how likely is it that tomorrow is a write-off? It helps to define what ‘write-off’ actually looks like: is it falling asleep at work? Is it forgetting to do a specific task? The question to ask is ‘how many times have you slept so badly that you fell asleep at work?’ Again, the answer is probably next to nil, but might be once or twice.

Then it’s important to point out the mismatch between the feared probability and the actual occurrence of the catastrophe.

You can do some maths here if you like: work out the number of nights in a year where the person has had insomnia, multiple this by the probability they give of ‘never sleeping’, and arrive at a number. Then work out the number of days where the person has actually fallen asleep and multiply this by the number of nights of insomnia. This quite clearly points out the disparity between what the person is worrying about – and the likelihood that it actually happens.

It helps at this point to remind the person again that at night, their logical thinking goes awry and so it makes it harder to think clearly, so some helpful phrases could be brought in to counter that fear. Something like ‘I won’t sleep at all tonight’ could be countered with ‘I probably will sleep at least a bit, and even if I do have a bad night’s sleep, it’s not very likely that I’ll fall asleep at work, so I can deal with it just fine.’

By using information from the person, and working through the maths, it helps to reduce the emotional reasoning that can otherwise influence behavior.

Let me know what you think – worth trying this approach for other catastrophic thoughts?

‘its taken over my life’…

Each time I spend listening to someone who is really finding it hard to cope with his or her pain, I hear the unspoken cry that pain has taken over everything. It can be heartbreaking to hear someone talk about their troubled sleep, poor concentration, difficult relationships, losing their job and ending up feeling out of control and at the mercy of the grim slave-driver we call chronic pain. The impact of pain can be all-pervasive, and it can be hard to work out what the key problems are.

To help break the areas down a little, I’ve been quite arbitrary really. I’m going to explore functional limitations in terms of the following:
1. Movement changes such as mobility (walking), manual handling, personal activities of daily living
2. Disability – participation in usual activities and roles such as grocery shopping, household management, parenting, relationships/intimacy/communication
3. Sleep – because it is such a common problem in pain
4. Work disability – mainly because this is such a complex area
5. Quality of life measures

The two following areas are ones I’ll discuss in a day or so – they’re associated with disability because they mediate the pain experience and disability…as I mentioned yesterday, they’re the ‘suffering’ component of the Loeser ‘rings’ model.
6. Affective impact – things like anxiety, fear, mood, anger that are influenced by thoughts and beliefs about pain and directly influence behaviour
7. Beliefs and attitudes– these mediate behaviour often through mood, but can directly influence behaviour also (especially treatment seeking)

There are so many other areas that could be included as well, but these are some that I think are important.
Before I discuss specific instruments, I want to spend yet more time looking at who and how – and the factors that may influence the usefulness of any assessment measure.

Who should assess these areas? Well, it’s not perhaps who ‘should’ but how can these areas be assessed in a clinical setting.

Most clinicians working in pain management (doctors, psychologists, occupational therapists, physiotherapists, nurses, social workers – have I missed anyone?) will want to know about these areas of disability but will interpret findings in slightly different ways, and perhaps assess by focusing on different aspects of these areas.

As I pointed out yesterday, there are many confounding factors when we start to look at pain assessment, and these need to be borne in mind throughout the assessment process.

How can the functional impact of pain be assessed?

• Self report, eg interview, questionnaires – and the limitations of these approaches are reliability, validity threats as well as ‘motivation’ or expectancies
• Observation, either in a ‘natural’ setting such as home or work, or a clinical setting
• Functional testing, again either in a ‘natural’ setting such as home or work, or a clinical setting – and functional testing can include naturalistic procedures such as the AMPS assessment, formal and structured testing such as the 6 minute walk test, the sock test, or even certain functional capacity tests; or it may be clinical testing such as manual muscle testing or range of movement, or even Waddell’s signs

All self report measures, whether they’re verbal questions, interview or pen and paper measures are subject to the problem that they are simply the individual’s own perception of the degree of interference they attribute to pain. The accuracy of this perception can be called into question especially if the person hasn’t carried out a particular activity recently, but in the end, it is the person’s perception of their abilities.

All measures need to be evaluated in terms of their reliability and validity – how much can we depend on this measure to (1) assess current status (2) contribute to a useful diagnosis (or formulation) (3) provide a basis for treatment decisions (4) evaluate or measure function over time (Dworkin & Sherman, 2001).

Reliability refers to how consistently a measure performs over time, person, clinician.

Validity refers to how well a test actually measures what it says its measuring.  The best way to determine validity is if there is a ‘gold standard’ against which the test can be compared – of course in pain and functional performance, this is not easy, because there is no gold standard!  The closest we can come to is a comparison between, for example, a self report in a clinic on a pen and paper test compared with a naturalistic observation in a person’s home or workplace – when they’re not being observed.

Probably one of the best chapters discussing these aspects of pain assessment is Chapter 32, written by Dworkin & Sherman chapter in the 2nd Edition of the Handbook of Pain Assessment 2001 (DC Turk & R Melzack, Eds), The Guilford Press.

Importantly for clinicians working in New Zealand, or outside of North America and the UK, the reference group against which the client’s performance is being compared, needs to be somewhat similar to the population the client comes from.  Unfortunately, there are very few assessment instruments that have normative data derived from a New Zealand or Australasian population – and we simply don’t know whether the people seeking treatment in New Zealand are the same on many dimensions as those in North America.

I’m also interested in how well any instruments, whether pen and paper, observation or performance-based assessment translate into the everyday context of the person.  This is a critical aspect of pain assessment validity that hasn’t really been examined well.  For example, the predictive validity (which is what I’m talking about) of functional capacity tests such as Isernhagen, Blankenship or other systems have never been satisfactorily established, despite the extensive reliance on these tests by insurers.

Observation is almost always included in disability assessment. The main problems with observation are:
– there are relatively few formal observation assessments available for routine clinical use
– they do take time to carry out
– maintaining inter-rater reliability over time can be difficult (while people may initially maintain a high level of integrity with the original assessment process, it’s common to ‘drift’ over time, and ‘recalibration’ is rarely carried out)

While it’s tempting to think that observation, and even functional testing, is more ‘objective’ than self report, it’s also important to consider that these are tests of what a person will do rather than what a person can do (performance rather than capacity). As a result, these tests can’t be considered infallible or completely reliable indicators of actual performance in another setting or over a different time period.

Influences on observation or performance-based assessments include:
– the person’s beliefs about the purpose of the test
– the person’s beliefs about his or her pain (for example, the meaning of it such as hurt = harm, and whether they believe they can cope with fluctuations of intensity)
– the time of day, previous activities
– past experience of the testing process

And of course, all the usual validity and reliability issues.
More on this tomorrow, in the meantime you really can’t go far past the 2nd Edition of the Handbook of Pain Assessment 2001 (DC Turk & R Melzack, Eds), The Guilford Press.

Here’s a review of the book when the 2nd Edition was published. And it’s still relevant.

Making an exception – one way to soften a rule

I’ve mentioned before that one of the main problems with helping people to develop new ways of managing their pain is internal rules – things that we all learned as kids probably! Things like ‘if a job is worth doing, it’s worth doing well’, ‘never leave a job unfinished’..

These are great general rules, but for people who are learning, for example, to work to a quota, or to use activity ‘chunking’, or even to use a relaxation strategy at set times during the day, they can prove to be a cruel rod for their back.

How do you know when someone is applying a rigid rule?

Using the same method as for identifying automatic thoughts, ask the person ‘what when through your mind when you started to take a short break?’

If they respond with something like ‘I just couldn’t’ or ‘It didn’t feel right’, or ‘I could never leave a job undone’ – you have an opportunity to help them soften their rule, or make an exception.

I may ask them why they couldn’t, or why didn’t it feel right – and uncover a rule then. Remember that rules are mainly beliefs that have the word ‘should’, or ‘never’, or ‘always’, or ‘must’ or similar – and there is usually a further thought about what it might be like if that rule is violated, and this is usually an attitude ‘it would be awful’, ‘I would be so ashamed’, ‘it would be horrible’, ‘I wouldn’t cope’.

The simplest way to soften this rule is to ask them to substitute that ‘rule’ word for a more gentle one, one that offers them a choice. This can be something like ‘could’, or ‘might’.

You can also ask the person whether they can make an exception to that rule – and when they might think an exception applies. I may use something like ‘what would you do if you had pneumonia or the flu and were laid up in bed?’. I then might ask them whether there are any other situations they might relax that rule. Some people then say that they know they can relax the rule, but ‘it doesn’t feel right’ – and this provides an opportunity to talk about emotional reasoning.

It’s worth also asking yourself – are there some rules you live by too? For example ‘I must make sure all patients feel good about what I do’, ‘I must never upset a patient’. Be aware that sometimes a crisis or a challenge exposes the contradiction the person faces between applying a rigid rule and still being able to carry out important things in their life. For example: having a wonderfully tidy home which interferes with being able to spend time with the children; being a very hard worker which interferes with being able to live a balanced life that promotes wellbeing.

More tomorrow!

We’re not trained monkeys!

One time I was carrying out some work for a large organisation that wanted to train a lot of people to do some assessment work. It annoyed me for some reason, and I’ve finally hit on the problem (OK, several years too late, but never mind!). The problem was that instead of teaching principles, I was asked to train on process and procedure. Now I don’t know whether this is a ‘me’ thing, or a more general thing, but I find that if someone tells me to do something following a certain structure or format, I NEED to know the underlying framework so it makes sense to me.

What does it give me? It gives me flexibility – and this is why I haven’t yet posted on specific questions to use when learning skills in carrying out cognitive behavioural therapy. Today’s post is an endeavour to look beyond the specific questions to ask and into the underlying direction and rationale for the questions. I think that for occupational therapists, physiotherapists, nurses, social workers – anyone who uses CBT alongside other therapies or activities – it’s necessary to be very flexible, because we can’t rely on the pre-determined structure of a CBT session to ‘programme’ the level we might work at.

For example, I was working with a woman yesterday who was undergoing a trial implantation procedure. She had been through many pain management programmes and seen many different therapists over the 10 or more years she had experienced her neuropathic leg pain. I was talking with her about what would happen when she returned home with her new device implanted, and working to draw up a daily plan of activities. As I started to sketch out the most important activities in her day and put in a rest period, I noticed a change in her affect.

At this point I asked her ‘What was going through your mind just then?’

She replied that she would never have stopped doing her household tasks ‘just to take a break’.

In many cognitive therapy sessions, this would have been the cue to work with her automatic thoughts and help her challenge her underlying rule that ‘you should always finish a job you start’. The typical pattern of enquiry would be to ask what that thought meant about:

• herself as a person
• other people in general
• what it would be like to violate that rule
• what it meant about her pain

In this case, given the timeframe I had and the purpose of the session, I decided to follow a behavioural tack. After confirming that she was ready to try taking short breaks, and reflecting to her that I wondered if she might find it difficult at first to stop in the middle of a task, I started working with her to identify ways she could remind herself to take a break – and reward herself.

Now if we were following a ‘trained monkey’ approach, we may not have siezed this opportunity – we may have either decided it wasn’t an important focus for the session, or tried to work through the questions that are usually used to help someone challenge their thinking.

What am I trying to say here?

• That it’s important to think beyond a formula or recipe

• That attending to the overall purpose of the session is important, but to take opportunities as they arise
• That choosing from a range of options, and being respectful of the individual’s values, can mean the door remains open
• That knowing the underlying principles of cognitive behavioural therapy opens up options that relying on a process can’t offer

What are some of the principles?

1. The basic foundation of CBT involves understanding the cognitive elements as well as the behavioural elements
2. ‘Homework’ is not the only way to assist with behaviour change!
3. Behaviours respond to behavioural reinforcement that includes rewards, recording results, and social modelling – thoughts and beliefs, while important, don’t always have to change first. They may in fact change as a result of discovering that new behaviours are working.
4. Having in mind the formulation (explanatory model) that is being developed and/or confirmed helps guide your interventions.
5. Core beliefs may be the reason someone finds it hard to use a new strategy. Unhelpful core beliefs, especially those that are applied rigidly, may be resistant to change.
6. Past events don’t need to be revisited except insofar as they help you and the person gain insight into their current beliefs and behaviour.

What do I mean by process?

This is what I also call ‘cookie cutter’ therapy. This is therapy that relies on a series of standard sessions and is applied to any and all patients. Or has a standard formula for every session. Or standard home-based activities.

People and therapists are not monkeys. We don’t respond to the same process, format, style or approach. We also don’t work at the same pace. We don’t have the same issues or factors influencing our experiences.

As occupational therapists, physiotherapists, nurses, social workers, speech language therapists and others use CBT within their practice, we can offer distinctive flavours of therapy, and this means our clients/patients have a greater chance of finding something that works for them. What we must guard against is rote learning a series of questions or standard sessions and thinking that this is sufficient.

More on CBT tomorrow – and next week, some worksheets! Don’t forget you can subscribe via RSS feed (click the link at the top of the page), or bookmark this site. You’re always welcome to comment, and I’m happy to be contacted too. Just head to the ‘About’ page.

Checking thoughts during activity

Why would we want to work with thoughts?

It’s not always essential to directly address thoughts but many times thoughts become quite unhelpful and prevent the person from engaging in your therapy. It can prevent them from adopting new skills (eg using pacing or even maintaining activity despite pain), or mean that they ‘resist’ therapy because something you’re asking them to do generates uneasiness.

By listening carefully to the meaning of what the person is saying, it’s possible to increase the level of rapport between you and the client, demonstrate your level of understanding and acceptance of them, and help them directly learn about their beliefs. This can be a powerful way for them to start becoming aware of what might be maintaining disability or avoidance – and helps you help them to consider both the good things about their beliefs, and the not so good things. Then they are able to make informed choices, which is really what we as therapists help people do.

Take a look at my ‘Coping Skills’ section, and click on ‘Checking thoughts during activity’ for a description of ways you might being able to identify and work with thoughts during activity.

Enjoy!

Responding to real but unhelpful beliefs

One of my beefs about cognitive therapy has to be the concept of ‘maladaptive’ or ‘erroneous’ beliefs. For many people experiencing pain, their beliefs are based on experience since developing persistent pain – so we could readily be called out if we suggest that their belief that ‘I always get a flare-up when I lift boxes off the floor’ was erroneous! It actually does happen, they do get pain every time they do this activity.

The problem with this thought is that it may be accurate, but it’s not helpful. And while the statement itself may be accurate, the underlying (and unstated) belief is something like ‘…and I shouldn’t have to experience pain’, or ‘…and I won’t cope with a flare-up’, or ‘…it’ll be horrible/awful/a disaster if I have a flare-up’.

So we’re not going to win if we reality-test the original statement, instead we need to help the person recognise the unstated rules, beliefs or attitudes that are being repeated, and help them work out more helpful ways of supporting action.

Eliciting the underlying statements can be tricky. Many people with pain haven’t actually explored their belief that they ‘shouldn’t’ have ongoing pain – I mean, who wants pain? And all our media and health professionals and medications and everything suggests that having pain is unnecessary and wrong! BUT people do have ongoing pain, not everyone can have their pain reduced, and pain is a fact of life (especially in developing countries).

Sooo, what can someone who isn’t a cognitive therapist say or do to help?

Some ways to elict automatic thoughts first:

What was going through your mind just then?

What do you think was going to happen just now?

What do you guess you were thinking about?

Do you think you could have been thinking about __________ or __________?

Were you imagining something that might happen or remembering something that did?

What did this situation mean to you? Or say about you?

Were you thinking __________? (Therapist provides a thought opposite to the expected response.)

It’s helpful to have a card with some of these prompts written down if you’re not used to asking this type of question…

Once you’ve helped the person access their automatic thoughts (remember they can also be images!), then it’s helpful to probe more to find out what is driving that thought.  Some useful questions are:

• What would it mean if that were true?
• Why does that bother you?
• What does it say about you if that were true?
• What is the effect of thinking like this?

Then it can be helpful to gently challenge these beliefs – like ‘what does ‘not coping’ really mean?’, ‘why do you think you were singled out to have ongoing pain, if no-one is supposed to have it?’

Asking for evidence to support the underlying rules, attitudes and beliefs needs to be done empathically, but consistently.  Some people will find it really hard to identify just what they do mean by their automatic thought, and may need some time to become aware that it’s their evaluation of the experience that is troublesome rather than the experience itself.  And its always up to the person to make a choice about whether they want to reconsider their automatic thoughts or not – it’s just your role to help them identify the consequences of their choices.

If they want to avoid activities because ‘it hurts’ the consequences are known – it will gradually become more difficult to maintain activity, and they will be acting against some of their values.

If they want to continue to believe that they ‘shouldn’t experience pain’ – they may continue seeking treatments, only to find that they’re disappointed again and again, which can be demoralising.

As a therapist, it’s really helpful to check your own automatic thoughts when you start to do this work – perhaps you avoid challenging people because you believe ‘people should be happy after they’ve seen me’, or ‘I shouldn’t upset people’.

Perhaps you are worried that you may harm someone if you ask them to continue with an activity when they’re sore…

Perhaps you think people ‘shouldn’t’ be asked to persist with activities ‘because I wouldn’t want someone doing that to me’.

The effects of our own automatic thoughts and underlying beliefs shouldn’t be ignored, because thoughts are powerful drivers even when they’re not fully expressed!

Remember, in chronic pain, people don’t die of pain – they suffer from fear, demoralisation, lack of hope, feeling out of control and feeling pessimistic for the future.  It’s our job to help them recognise that they can take control, and while pain is unpleasant (and it truly is!), it can be managed and life can be good.

Motivating people to make changes (iii)

The third of a series about using values and empathy to help people make choices

The previous two installments in this series have introduced the concepts of stages of readiness for change, rapport and empathy and appreciating that the people we work with have their own values influencing the choices they make. This paper introduces two strategies that can help people directly influence the focus of therapy while at the same time enabling you as a therapist to signal areas that are important.

From the outset of a clinical encounter, you as the therapist direct the interaction. This means you have the responsibility for ensuring the person you are working with has opportunities for choice. In order for you to find out what is important to the person, you need to ask about how their health situation is affecting them. This sets the agenda for your session.

Agenda are usually set by you – so giving the patient/client the opportunity to set what that is important to them at the outset immediately establishes your credentials as someone who will take them seriously.

We often do things that have unintended consequences in the medium to long term, while satisfying immediate desires. While we don’t always like the unintentional outcomes, it can be very difficult to resist instant gratification! While we satisfy our craving for chocolate, we risk gaining weight. Our taste for chocolate might make us feel better – but our good feelings disappear when we step onto the scales in a fortnight’s time… Similarly, the person who doesn’t want to work to quota because he ‘has to mow the whole lawns – and cut the edges’ may be reducing the immediate distress of letting the family down, but ends up being unable to go to work for a day – letting his employer down.

Part of what we are doing as we establish rapport is becoming aware of what is important (therefore valuable) to the person – and from this we can develop goals with the person that (hopefully) align with their values in the medium and long term.

Read further on this topic in my Coping Skills section.
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Motivating people to make changes (ii)

The second of a series about using values and empathy to help people make choices

The first installment in this series looked at why people might not be doing what we think they ‘should’ and how they might show this. This installment looks at developing rapport and reviews the essential interpersonal skills that are needed.

Rapport – what does it really mean? Is it just making small talk so the person calms down and is ready to listen to what we want to say? Or is it something much deeper?

Superficially, rapport is really about ensuring you and the other person are on the same wavelength. It can be as simple as asking them about the weather, or did they have a good day, or ‘what can I do for you?’ Done glibly it can be shallow and forced – and you know the person will only tell you what they think you want to hear (until they are just walking out the door and say ‘oh by the way…’!)

 

To respect this person’s situation, we need to believe that they have made the best possible choices given the resources they had at that time, and that to them their choices made sense at least once. Something about their choice was important to them at the time. Their choices reflect their values – what is important to them.

 

Although there are specific skills to help develop rapport, the first and most essential element is actually an attitude: ask yourself ‘Do I really respect this person?’ Respect means accepting that although the person is different, and has made choices that are different from yours, you can honour their position and understand that they have done so to make the best possible decision at the time.

Reflective listening is a basic skill taught (usually) early on in health professional training. It’s often assumed by both ourselves and others that we know how to use reflective listening, but sometimes our skills haven’t developed since we first learned them!

For more details – click here to go to this post in my Coping Skills section!