On the value of doing, being and becoming

An old occupational therapy tagline was “doing, being, becoming”. The meaning of this phrase is intended to point to the tight relationship between what we do, who we are, and how we develop and grow. As I read blogs discussing an increased emphasis on “real world” outcomes there is something missing from the narratives: that intangible quality that marks the difference between colouring in – and painting. Or filling in a form – and writing a poem. Going from room to room – and dancing. Something about expressing who we are and what we value.

Values are things we hold dear. They are principles, or “desired qualities of behaviour”, life directions (not destinations).

The things we do (our actions) are inevitably infused with our values because how we do things (sloppily, carefully, neatly, with gay abandon, enthusiastically) is an expression of what we think is important. To give you an example, I occasionally vacuum my house. Sometimes I’ll do it really thoroughly – because I love seeing a sparkling house. Sometimes I’ll do it with a flick and a promise – because it’s a beautiful day and I want to get out of the house. In both instances I’ve expressed something about what is important to me – I do enjoy seeing my home looking tidy and organised. I don’t have to have reasons for liking my home this way, I just do. When I do a quick flick through my home it’s not because I’m lazy or I don’t care, it’s because I value getting out of the house more than I value having a tidy and organised home on that day.

Values don’t have to be explained. We don’t have to have reasons for holding them. They’re something we choose to place as important.

Why be concerned about values? Well, they underpin our choices. They provide motivation towards some activities, and away from others.

There is a lot of emphasis at the moment on people with osteoarthritis “getting fit” and “doing exercise”. The current approach in New Zealand is to provide community-based programmes to people who have just been declined joint replacement surgery (because we can’t offer surgery to everyone who wants it). Uptake hasn’t been enormous, and to be honest I’m not surprised. People who haven’t been exercisers are not very likely to begin an exercise programme that is undoubtedly going to increase their pain in the short-term (because, duh, movement hurts!) even if the programme offers hope of improved pain and function in the future. Putting this into a “values” and “motivation” perspective, people usually value comfort over discomfort. They value short-term outcomes over long. If they’ve never exercised much, it’s clear that exercise isn’t something they value. To help them engage in an exercise programme, we need to work hard to identify values they hold dear so they’ll look to those to over-ride the value of comfort over discomfort.

An alternative might be to think of different ways of expressing values that will concurrently meet the goal of increased exercise. For example, I don’t enjoy exercise per se. In fact I’ve boasted that my body is an exercise-free zone! To tell the truth, that’s not exactly the case. I just don’t do “exercises”. Instead I dance. I get out of my chair for five minutes every 20 minutes and go do something involving my whole body. I garden. I play with the dog. I go out in the kayak. I walk miles when I’m fishing.

Some people would argue that “there’s no evidence base for this” – but I think we’ve forgotten that exercises are simply a planned and repetitive form of moving our bodies because we don’t do that nearly as much in modern times as we used to even in the early 1900’s, let alone in stone-age times. I don’t think hunter-gatherers “do exercises” except as training for something like war or hunting (to increase skill).

Living life with chronic pain must become a lifestyle. And it needs to be a lifestyle that has some life to it – not an endless series of “things we must do for health”, unless “health” is a particular value. If life is just about “things we do for health” doesn’t that constantly remind people of what they don’t have? That they’re not healthy? Making them patients instead of people? For most people, to be healthy is a means to an end: they want to connect with family, express who they are, contribute to their society, love and be loved. If the person in front of us isn’t into exercise, it’s OUR job to work out what they value and connect what we think is important to what they think is important, or we will simply fail.

Some simple steps to identify values – try these out in the clinic!

1. When a person attends your clinic, they’re expressing a value, that they care about something. Asking the person “what do you hope from coming to see me” is a pretty common opening line. Try extending this by, after they’ve answered, asking “why is that important to you?” or “what would it mean you could do” or “how would that make a difference to you?”
2. If a person says they don’t like something, try suggesting to them that they value the exact opposite. eg if they’ve said they really don’t like running, ask them why: “it’s boring” might be the answer. This answer suggests they like variety and excitement in their exercise routine. Then you can ask them what activities they see as exciting – maybe instead of running, they’d enjoy virtual boxing (bring out the Oculus Prime!), or a scavenger hunt, or geocaching.
3. Use the 1 – 10 “readiness ruler” technique from Motivational Interviewing. Ask the person to draw a line and put 1 at one end, and 10 at the other. 1 = not at all important and 10 = incredibly important. Then ask them to put a cross on the line to indicate the importance they place on doing exercise/healthy living/pain management (whatever you’re asking them to do). Then (and this is important!) ask them why they put that mark so high. This is important – even if that mark is down on 2!! Ask them why they put it there and not lower. This will help elicit important values that you can then use to connect what you want them to do with what they value.
   

An allied health response to primary care for musculoskeletal aches and pains

For as long as I can remember, the joke about doctors saying “take two paracetamol and ring me in the morning” has been a pretty accurate reflection of reality – but no more perhaps?

A large review and meta-analysis of randomised placebo controlled trials of paracetamol in back pain and osteoarthritis has found that although paracetamol can provide a limited reduction in pain in osteoarthritis but not at a clinically important level, there is an elevated risk (four times) of having abnormal results on liver function tests (Machado, Maher, Ferreira, Pinheiro, Lin et al, 2015). The meaning of this elevated risk on liver function isn’t clear, but what is clear is the very minimal effect of what has been used as a mainstay drug for two of the most common complaints in the world.

Oh what are we to do? Because if the findings about paracetamol are stunning, add to it the clear evidence of harms associated with nonsteroidal anti-inflammatories, and we have a situation where the two most common front-line treatments for musculoskeletal pain are being strongly questioned. What’s a busy GP meant to do?

As a community, I think health professionals working with people who have musculoskeletal pain need to begin a concerted campaign to show the value of nonpharmacological approaches to managing life with aches and pains. We already have this beginning with some of the physiotherapy social media campaigns – see a physio first! But I think we could add “See your allied health team first”.

What would it mean to see an allied health professional first? And what would allied health professionals need to do to make this a valid option?

I think allied health professionals would need to make some changes to how we assess people presenting with pain – I wouldn’t want to ban the biomechanical, but here’s a question: how well do physiotherapists consider the psychosocial in their history taking? Luckily I don’t need to have the answer because Rob Oostendorp, Hans Elvers and colleagues have done the work for me.  In this study, therapists were observed conducting their first assessment with a new patient experiencing chronic neck or back pain. Their interviews were reviewed against the SCEBS (Somatic, Psychological (Cognition, Emotion and Behaviour) and Social dimensions of chronic pain), and given scores for how well the interviews explored these domains. Perhaps unsurprisingly, history taking for the Somatic dimension (how sore, where are you sore, what triggers etc) was excellent, with 98% including this area. BUT, and you’d expect this perhaps, Cognition was 43%, Behaviour was 38%, Emotion was 28%, and Social was 18%. What this means is that despite the clinicians themselves considering their coverage for all but the social domain as being “adequate”, in reality the only aspect that these clinicians covered well was the most basic area – “what does it feel like?”.

Challenging indeed.

Now, what would happen if we then examined what these clinicians do with that information? Because if we’re not so wonderful at collecting useful information across domains, my bet is that we’re even worse at combining this information to make sense of it – in other words, developing useful formulations.

Unfortunately I don’t have any information on how we as allied health clinicians use the information we collect, but if my experience as an educator and the very limited number of papers discussing formulations is anything to go by, I don’t think we’re doing too well. I suspect we tend to collect information then blithely continue doing what we’ve always done in terms of treatments. And I’m sorry I don’t have the evidence to support my hunch – would someone take this on for a project, please?

I think allied health professionals also need to make some changes to how we present what we do to the general public. While most people in the general public know that physiotherapists help people move, osteopaths are gentle and work with their hands, chiropractic looks after backs and necks – I’m not so sure anyone really knows what occupational therapists might offer, and I’m certain there would be some angst if psychologists were recommended as front line clinicians for musculoskeletal problems!

You see, while we’ve been concerned about a biomedical dominance in musculoskeletal pain, we haven’t been as good at helping the general public recognise that aches and pains are fairly common and often not a sign of pathology. We’ve been pretty poor at showing the value of relaxation, mindfulness and down-regulation as useful ways to deal with pain. We haven’t addressed the need to engage in occupations and activities that are fulfilling and enjoyable and enriching. In fact, I venture to say that we have almost wholly bought into the biomedical model when it comes to how to conceptualise musculoskeletal aches and pains. We are as guilty as anyone for considering an ache or pain as a sign that the person needs to be “fixed” or “mended” or “aligned” or “stabilised”.

I think a more radical approach, and one that allied health professionals can really endorse because there is evidence for it, is that living well involves being fully human beings. That means allowing ourselves to engage in what we love to do, to not only be active but also to relax, to be exuberant and to be peaceful. To think of our lives as a whole, rather than an isolated ouchy hip or knee or neck. And to look to our whole lifestyle as key to living well rather than “treating” the bit that happens to be bothering us right now.

Imagine that – an allied health workforce that puts out the message that life and wellbeing are the products of balancing all the wonderful facets of being human.

 

 

Machado, G.C., Maher, C.G., Ferreira, P.H., Pinheiro, M.B., Lin, C.-W.C., Day, R.O., . . . Ferreira, M.L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: Systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Oostendorp, Elvers, Mikolajewska, Laekeman, van Trijffel, Samwel, Duquet (2015). Manual physical therapists’ use of biopsychosocial history taking in the management of patients with back or neck pain in clinical practice. The Scientific World Journal, 2015, art. 170463, doi: http://dx.doi.org/10.1155/2015/170463

On pain…and suffering

Two words that often go together: Pain, Suffering.  Pain we can define according to the IASP definition –

An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage (Read the note below as well).

Suffering? What is that?

My favourite definition comes from Eric Cassell (Emeritus Professor at Cornell University). He makes the point that bodies don’t suffer, only people do, saying that “in all the situations in which suffering comes about the meaning of the occurrence to the person and the person’s perception of the future are crucial” (Cassell, 2011). The point he makes is that while bodies may have nociception, and neuroendocrine responses to emotional stimuli, bodies do not have a sense of the future, and bodies don’t know meanings, only people do.  Illness doesn’t come from disease, it comes from a process that “unfolds over time” as the sickness and how it is lived show the individual character of the person who has them.

So, then, what is suffering? It is the response to a threat to self-integrity.  This means the way we suffer is always personal to what matters most to us.

Cassell’s paper outlines why some of our healthcare efforts result in more suffering than less. He argues that health professionals want to alleviate suffering, but need some sort of measurement tool to detail whether their efforts have met with success. But being better, or worse, is “ultimately defined by the patients themselves”, and when sickness is defined, it should reflect what it means to be well in the patient’s terms (Cassell, 2011, p. 12).

Now here’s where it gets interesting. Because health professionals make assumptions about what it is that is causing the suffering in their patients. And in many cases, the assumption in pain management is that it’s the pain that is causing the suffering. If that were the case, people with low levels of pain wouldn’t seek help, and people with extreme pain would be seeking treatment. Is that the case? Well, not exactly, actually. People seek treatment because their pain is beginning to interfere with what they want to do (Ferriera, Machado, Latimer, Maher, Ferriera & Smeets, 2010). It’s the meaning of the pain that drives people to look for help. So, we have people with arm pain they’ve had for months, but they seek treatment only when there is a change at work because now they can’t keep up.  People with low back pain who only look for help because it’s winter now and they can’t stand on the rugby field to watch their son playing.

The problem with assuming that having pain is equal to suffering is that there is an expectation that treating the pain intensity will automatically alleviate the suffering.

Let’s think about that for a moment: Jonathan has just had his first episode of angina. He came into hospital for it to be checked out, and has been given a clean bill of health but given tablets to take if the pain returns. He’s advised “this is a bit of a warning”, and told to go on his way but perhaps lose a little weight and do some more exercise. Jonathan hears “next time you have this it could be the Big One”, and because his pain occurs when he’s doing exercise, he doesn’t exercise very often. He takes his angina pills as soon as he begins to feel a little tightness in his chest. And he seems to be having this quite often, especially when he starts thinking about how he nearly had a heart attack. He has no pain – but he is suffering.

Or another example: Frances has had a series of blocks to locate the source of her pain in her lower back. They’ve found it, but the results of the radiofrequency neurotomy are not as good as the blocks were. She has a lot less pain, but she’s afraid that if she moves too much, she might do more damage to her back and this will bring her pain on, so she’s playing it safe and hasn’t returned to her netball. She misses the social atmosphere of netball and, to be honest, she’s feeling down in the dumps, and because she’s not exercising she’s gaining weight. She’s suffering although her pain has been reduced.

I’ll conclude with these thoughts from Cassell (2011). I think this paragraph is profound –

A human being in all its facets interacts simultaneously outwardly into the world and with others, as well as inwardly in emotions, thoughts, and the body, and these are generally consistent and harmoniously accordant. By contrast, suffering variously destroys the coherence, cohesiveness, and consistency of the whole. The person’s experience of this is of no longer being in accord and “whole,” but rather of “being in pieces,” of not being able to “hold themselves together.” It is in this sense that suffering threatens or destroys the integrity or intactness of the person.

He points out that some practitioners think almost two kinds of knowledge exist: medical science about the body and disease, and knowledge of the person. And that these only join together at the bedside.  He says “The problem is not two kinds of knowledge in medicine, the problem is that the goals of practice are almost universally divided – treat the disease and care of the patient focusing on the personal asepcts of the illness – as though these were two separate elements to be brought together. That is not correct. There is only one goal: the well-being of the whole person who is the patient.”

And this is The Most Important Thing Ever:

The key to relief of suffering is a focus on function. What do patients have when they have a sense of well-being? They believe they can accomplish their purposes and goals. Put another way, they can do the things they need and want to do to live their lives the way they want to (Cassell, 2011, p. 16).

Note: The inability to communicate verbally does not negate the possibility that an individual is experiencing pain and is in need of appropriate pain-relieving treatment. Pain is always subjective. Each individual learns the application of the word through experiences related to injury in early life. Biologists recognize that those stimuli which cause pain are liable to damage tissue. Accordingly, pain is that experience we associate with actual or potential tissue damage. It is unquestionably a sensation in a part or parts of the body, but it is also always unpleasant and therefore also an emotional experience. Experiences which resemble pain but are not unpleasant, e.g., pricking, should not be called pain. Unpleasant abnormal experiences (dysesthesias) may also be pain but are not necessarily so because, subjectively, they may not have the usual sensory qualities of pain. Many people report pain in the absence of tissue damage or any likely pathophysiological cause; usually this happens for psychological reasons. There is usually no way to distinguish their experience from that due to tissue damage if we take the subjective report. If they regard their experience as pain, and if they report it in the same ways as pain caused by tissue damage, it should be accepted as pain. This definition avoids tying pain to the stimulus. Activity induced in the nociceptor and nociceptive pathways by a noxious stimulus is not pain, which is always a psychological state, even though we may well appreciate that pain most often has a proximate physical cause. [italics my own]

Cassell, Eric J. (2011). Suffering, whole person care, and the goals of medicine. In T. A. E. Hutchinson (Ed.), Whole person care: A new paradigm for the 21st century (pp. 9-22). New York, NY: Springer. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=psyc7&AN=2011-24010-002. doi: 10.1007/978-1-4419-9440-0

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

What’s in a name? Why getting a diagnosis of chronic pain is important

Sticks and stones my break my bones, but words will never harm me – yeah right! Words have power when we’re looking for treatment, or we’re giving treatments for pain. I’ve written about the staying power of language used to describe back pain here.

But let’s look at a more distinct problem: diagnoses.

Diagnoses are, in the words of Annemarie Jutel, “the classification tools of medicine…” Sociologically, they segment and order bodily states, indicating what is and isn’t normal. “A diagnosis is integral to medicine because it organises illness, identifies treatment options, predicts outcomes and provides an explanatory framework (Jutel, 2009). ”

Diagnoses also give people permission to be ill. Being diagnosed replaces mystery with — well, something else depending on the label.

Getting a diagnosis indicating that chronic pain was not likely to be alleviated was a striking finding from my PhD research, and supported by numerous qualitative studies. What I found, and others too, was that once a person had been told that their pain wasn’t likely to go, that the disease was chronic and couldn’t be cured, it wasn’t long before people began to think about life with pain rather than searching for a cure.

It’s interesting that although I could find a lot of research looking at how doctors let people know they have cancer, or a life-limiting illness, I couldn’t find anything to show how doctors give someone the news that they have chronic pain. Anecdotally I have heard that doctors don’t like to tell people their pain is likely to be there “forever”, but I couldn’t find anything in the journals to explain what it was like to be the doctor in this situation. And yet it must happen – or does it?

Doctors use diagnoses to predict, to organise, to tell them what to do next. Chronic pain, because of its complex and disputed nature (is it illness? is it disease? is it physical? is it mental?) is one of those labels that violates these principles. A diagnosis of chronic pain, in many cases, means the doctor has no more treatment ideas, or at least, a very limited repertoire.

Let’s look at this from the point of view of the person living with chronic pain. For probably four or five years this person will have been looking for answers. Initially he or she will have been given some sort of diagnosis “low back sprain” or “whiplash”. This may have been extended and refined to become “z-joint dysfunction” or “disc bulge”. Maybe this will have been added to with names like “trigger points” or “myofascial pain”. Even “anterior pelvic tilt” or “muscle imbalance”. Perhaps “kinesiophobic”. Findings on imaging will have been negligible – or pointed to with a flourish: “There! There is your problem”.

With each label, a new set of predictions is made. “If you do X exercises, it will come right”. “Here, let me do Y procedure and you take this medication, and you’ll be fine”.

And each time, the person hasn’t responded. The feelings of hope go up with a new diagnosis, then plunge to the depths as the new treatment doesn’t work.

At the back of the person’s mind is the suspicion that this pain isn’t really going to go away. But it’s not until someone “official” makes a diagnosis, confirming the prognosis, that her or she can put away the ideal of “going back to normal” and begin to figure out how to be a person-in-pain rather than a person waiting for a cure. Because until someone official sanctions this suspicion, there still is this sneaking hope that maybe, just maybe, a cure for this pain will be found, if only they get the right diagnosis.

What makes it so hard for doctors to give this diagnosis?

I haven’t identified anything definitive, so this is speculation, but here goes.

Chronic pain is a disputed disorder. It lives between physical disease and mental illness. Often no physical cause can be found, and because of the legacy of Descartes, an assumption is made that therefore it must be “mental” or at the very least “biopsychosocial”. But not biopsychosocial in the way that I understand it, more of “psychosocial-because-I-can’t-find-the-real-problem”.

I also think doctors (and other health professionals) have a hard time admitting they can’t fix something. It’s difficult to say “here’s the boundary of medical science”. This is why so many people spend their lives looking for cures for cancer, spinal cord injury, rheumatoid arthritis, multiple sclerosis etc.

I think it’s emotionally demanding work. To tell someone “you have this chronic pain, you’ll need to learn to live with it” can provoke anger, grief, despair, distress. That’s not easy – especially if you’re a doctor who is a little fearful that he or she might have missed something. “What if there really is something treatable?”

It’s also an invitation to a long-term healthcare relationship. People with chronic pain don’t go away, they’re not palliative care. To some GP’s, people with chronic pain are SO difficult to deal with. They turn up at all hours, they’re distressed, they’re depressed, they’re needy, nothing works. Not the kind of patient a GP really wants to deal with.

Finally, I think it’s very difficult to be a GP who sees people with chronic pain because, seriously, what can you do for them? There are very few places for people with chronic pain to be referred. Few treatments. Nothing is very effective.

It’s like opening Pandora’s box. Once a diagnosis of chronic pain is made, this person will need to take time to look at their life and make changes. That’s terribly challenging work. Not really what a GP’s practice is for. Making life changes is personal, individual, takes time and people often fail and need to repeat the process. This is the nature of chronic disease management – it’s not about medication, it’s about examining and exploring what will help this person feel well.

And what did my research show? That those practitioners who did the “little things” like personalising an exercise plan, like agreeing to stick with the person as he or she finds ways around or with the problem, who phoned or sent a text to see how the person was getting on – these made all the difference.

So, one more piece of the puzzle of helping people live well despite their pain is letting them know they have chronic pain, that it won’t go away completely, and conveying your belief that they have the resources to live well and you’ll be there beside them. If that’s not all about a therapeutic relationship, then I don’t know what is.

 

Engel, George L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129-136. doi: http://dx.doi.org/10.1126/science.847460

Jutel, Annemarie. (2009). Sociology of diagnosis: a preliminary review. Sociology of Health & Illness, 31(2), 278-299.

Routines, habits, boredom & variety: Life skills for living with chronic pain?

I’ve just had a wonderful week on holiday. I escaped the internet, social media, telephones, power, flushing toilets, running water… and it was awesome! There’s something good about taking a break from my usual world to do things completely differently. Now that I’m back I’m reflecting on routines and habits, and how they form an important part of my life.

Routines are sets of behaviours (occupations if you know occupational science) that regularly occur in a certain sequence. Habits are behaviours or occupations we do without needing to directly think about them – maybe because we’ve done them so often they’ve become semi-automatic. Both routines and habits are useful because they reduce the demand on our attention and therefore draw less on our cognitive resources.

This can be a good thing – who would want to have to think about every single thing we have to do to get up and off to work each day?

One of the things people working in chronic pain management often discuss with those they see is how to manage activity levels so that important things can get done without leaving the person feeling exhausted, flaring up their pain, or omitting to do things they value. Activity pacing is one of the main strategies discussed, and although the evidence base for this strategy is skinny, it’s a very common approach. BUT, and it’s a big BUT, it requires people to plan and organise both what they want to do, and how and when they do them.

Many people would think this is pretty self-explanatory. Who doesn’t sort out a To Do list and prioritise what needs doing in a day or week?

Ermmm – actually, there are plenty of people who don’t do this regularly. That’s why one of the most common tools in business is time management! Remember the Day Runner Diary? The Four Quadrants (Steven Covey) Approach? The ABC of prioritising? All tools used to organise what does and doesn’t need to be done.

While these tools are readily used in business, it’s rather less often that we think about helping people organise their lives outside of the workplace. I guess this is because most of us think this just happens naturally – intuitively, if you will. Intuition, though, can be defined as “over-learned habits” that we have learned so well we’ve forgotten we ever needed to learn them in the beginning.

The field of habits and routines is part of self-regulation. Self-regulation includes these components, but also incorporates the ways we raise our energy, calm ourselves down, maintain time awareness, set our sleep/wake cycle, and manage emotions.  Self-regulation theory has been proposed as a model for helping people with some forms of chronic pain cope more effectively with their pain and fatigue (Sauer, Burris,  & Carlson, 2010). There’s some neurobiological evidence to show that some forms of chronic pain, notably fibromyalgia, have greater connectivity and baseline activity between regions of the brain involved in self-regulation including the really important parts involved in executive functioning. This means things like switching attention from one thing to another, or responding to threat appropriately (then settling down afterwards) are more difficult.

And some people are born with, or perhaps develop, less effective self-regulatory neural processes – these are perhaps the people who seem to forget deadlines, arrive late, don’t take medications at the right time, perhaps don’t have regular meals, maybe run out of ingredients (or clean clothes!), and generally find it more difficult to get their life together.

Self-regulation treatments are often concerned with ways to down-regulate breathing, heart rate, and to manage attention. Habits and routines, on the other hand, are larger chunks of behaviour that might not be addressed. Maybe this is why some people forget to do their CBT thought records and don’t do the exercises they’re meant to do. As clinicians, we can think these “forgettories” are a sign of noncompliance, lack of motivation, or not really understanding the importance of the things we ask them to do. I suggest that maybe, for some people, it’s more about failing to have some of the foundational skills needed to get organised into a routine so that there’s enough brain space for people to add new tasks into their day.

What to do about this?

I think we can draw from three main sources of literature here. The first is self-regulation theory where people like Nes, Roach, & Segerstrom (2009), Sauer, Burris & Carlson (2010) are looking at some really useful models. By helping people develop mindfulness, relaxation skills, and awareness of internal physiological states, greater ability to self-regulate is developed. But this only addresses the internal states – what about the bigger chunks?

The next source of literature is probably that from mTBI, or post-concussion rehabilitation. One of the features of post-concussion syndrome is difficulty switching attention, becoming fatigued, recognising when and how to stop or slow down. There are plenty of fun games (yes, even Lumosity!) that can be used to help people develop greater cognitive flexibility, memory, and to improve concentration, attention and so on.

But this still doesn’t address the bigger chunks of activity we need to do. So here’s where I think occupational science and occupational therapy might be really useful: all the tools of time management, cognitive props like using a cellphone alarm to remind you to take medications, daily planners, post-it notes, identifying values and using these to prioritise tasks, having a diary, writing lists – all of these can help, provided they’re tailored to the individual’s needs and lifestyle.

So, before you think that habits and routine are boring, and that planning removes variety – or that the person you’re working with who just doesn’t do those exercises is really Just. Not. That. Motivated. Maybe it’s to do with not being all that great at habits and routines or self-regulation, and maybe you can help them get better at these foundation skills.

 

Clark, F. (2000). The concepts of habit and routine: a preliminary theoretical synthesis. Occupational Therapy Journal of Research, 20(Sup 1), 123S-137S.

Nes, Lise Solberg, Roach, Abbey R., & Segerstrom, Suzanne C. (2009). Executive functions, self-regulation, and chronic pain: A review. Annals of Behavioral Medicine, 37(2), 173-183. doi: http://dx.doi.org/10.1007/s12160-009-9096-5

Sauer, Shannon E., Burris, Jessica L., & Carlson, Charles R. (2010). New directions in the management of chronic pain: Self-regulation theory as a model for integrative clinical psychology practice. Clinical Psychology Review, 30(6), 805-814. doi: http://dx.doi.org/10.1016/j.cpr.2010.06.008

Whiteford, G. (2007). Artistry of the everyday: connection, continuity and the context. Journal of Occupational Science, 14(2), 77-81.

Wiese, Dunn W. (2000). Habit: What’s the brain got to do with it? Occupational Therapy Journal of Research, 20(Sup 1), 6S-20S.

Living well with persistent pain – a problem solving model

Regions of the cerebral cortex associated with pain. (Photo credit: Wikipedia)

Chronic pain is abnormal. Living well with chronic pain seems a myth, a bit of an impossibility. After all, chronic pain starts with the kind of pain that most people would expect to go away – acute pain.  Acute pain is normal and most of us will experience some painful episode today.  Acute pain goes away – either by itself, or because we’ve done something to remove the stimulus that triggered the cascade of neurological events that eventually reached the brain that produced the experience of pain.

Because chronic pain begins just like any other pain, and because acute pain generates our attention and stimulates some sort of problem solving process so we can take appropriate action, it makes sense that we apply the same problem solving strategy to the problem of chronic pain.  Eccleston and Crombez (2007) proposed that one of the ways we can view the distress, loss of function and reduced quality of life is through a model of “misdirected” problem solving.

Problem solving is often discussed as if the problem exists outside of a context. “Here’s the problem, go solve it” fails to establish the frame of reference – why is it a problem? who has the problem? what contributed to the problem? what resources are available to fix the problem?

One of the major contributions of psychology in the field of pain, particularly a cognitive behavioural model, is helping people view their problem differently. If a situation is viewed differently, the “problem” may go away, or at least be seen as manageable.

BUT, in the case of pain, mostly people start by thinking that pain is something to be cured or fixed, the pain should go away, and life should return to normal.  In the case of chronic pain, when the pain persists, the same problem solving strategies that work so well for acute pain begin to get in the way of living. Life becomes a merry-go-round of searching for relief (maybe an explanation, diagnosis, medication, surgery, new treatment), hope being raised, then very often being dashed because nothing has changed.

Eccleston and Crombez describe this cycle in terms of the function of worry.  “Where such problem solving leads to success, pain and worry abate. However, when the problem solving attempts fail to find a solution, worry is fueled. A ‘perseverance loop’ is established in which the failure of a solution to the problem of pain amplifies worry. In this loop increased worry functions to strengthen motivation to persevere in solving the problem. Problem formulation becomes narrowed and inflexible, whilst greater effort is employed repeating the same solutions. If on repeated attempts a solution is achieved, again pain and worry will stop. “

Over the past 20 years or so, cognitive behavioural approaches for helping people cope with their ongoing pain have focused on reducing distress and disability by helping people reframe the problem of persistent pain as something that can be managed.  This takes the focus off trying to remove the pain, and broadens problem solving so that people begin to look at what else can help them live well.

My research is examining how people who do live well with their pain manage to do so.  While the people I’m talking with don’t say no to new treatments, they don’t seem invested in it so that their whole lives are focused on solving the problem of pain.  Instead, they seem to view pain as “just another thing” that they deal with while they get on with the real business of living life. Some have found that having chronic pain has enthused them with a new direction in life. Others have a focus on family, or community, or work.

The context of chronic pain matters.  It’s the way that the problem of chronic pain is framed that situates and generates the range of problem solving options that are considered.  If we ask a person “what’s important in your life”, and see if they’re willing to make room for having pain present while they engage in occupations or activities that allow them to live their values, we offer people a chance to live well with their persistent pain.

Eccleston, C., & Crombez, G. (2007). Worry and chronic pain: A misdirected problem solving model PAIN, 132 (3), 233-236 DOI: 10.1016/j.pain.2007.09.014

Eccleston, C (2011). A normal psychology of chronic pain The Psychologist, 24 (6), 422-425

Related articles

• Gene discovery may soothe chronic pain (futurity.org)
• Race and Socioeconomic Background Influences Chronic Pain, Says Study (onehealthyblog.wordpress.com)

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Empathy, distress and mindfulness

One of the main thrusts of the paper by Hadjistavropoulos, Craig, Duck, Cano, Goubert, Jackson, et al., is that pain communication can serve several functions – it can be an action where a message is sent or received; it can be an interaction where the message is sent, received and interpreted; or it can be a transaction where the messages are exchanged but something other than the messages exchanged actually occurs such as a verbal exchange that results in a contractual agreement.

Communication as action can be something like when a person groans, rates their pain as “really bad”, or goes to a clinic.  Communication as interaction can be when a person is able to communicate their distress to their partner so the partner can understand how the person is feeling.  And when that person sees a doctor, tells him or her about the pain and the doctor makes a diagnosis and then starts treatment, communication as transaction has occurred.

It’s the communication as interaction that I want to talk about today, and particularly in the case of someone in distress – because that interaction can move from simply an interaction to a transaction depending on how the communication is interpreted.  Let me explain.

A person I’ve been seeing (and don’t forget, details are modified to protect confidentiality) has low back pain.  She has completed her pain management programme but every now and then makes contact.  Yesterday I had a message given to me by our receptionist saying that Andrea had phoned, sounded really upset and could I call back as soon as possible.  This is communication as transaction – the receptionist had made a commitment to do something.

Anyway, I phoned Andrea and she did sound incredibly distressed.  Her voice wobbled and I could hear her breathing in short gasps.

“I’ve hurt my back again”, she said. “I can’t move my neck, my shoulder, and I can’t lie down, I don’t know what to do!  My doctor wants to send me to hospital. I’ve taken all the meds I’m allowed to, and they’re not working. I haven’t slept. What do I do?”

Well, to me she sounded pretty unhappy! My interpretation of her tone of voice, the panting and gasping I could hear and the words she used was that she was scared, she was struggling to maintain control, and she wanted rescuing.  This is communication as interaction.

I had a choice. I could tell her what to do. Take control of the situation and “do something” just as her doctor had.  But what would my doing so communicate to her?  Where was my belief that she had skills, she knew what to do?  And, more importantly, was this what she really wanted from our interaction?

Another option was to try to soothe her, talk her through her distress and ease her fears, to settle her down. What would my doing this communicate to her? Would it teach her that she had every right to feel upset and out of control, to fear this flare-up of pain, to avoid experiencing it?  And would I be doing this out of my concern for her, or to reduce my own distress at the rawness of her emotions?

I learned, way back in my early training, that empathy can be defined as “being able to walk an another person’s moccasins”.  Apparently this was a Native American saying to show that to really know where someone is coming from means to feel the blisters their shoes make on your feet.  Being empathic is an important part of clinical work.  But there are drawbacks – standing with another’s emotions can expose your own vulnerability, and it involves effort. It can be fatiguing.

For many clinicians, I think it’s difficult to allow someone else to feel their own feelings without wanting to “take the pain away”.  I wonder whether this is (a) what the person wants, someone to “fix the problem” and (b) teaching the person that these emotions are bad, wrong or to be feared.  And I wonder whether this response says more about the clinician’s own ability to be present with distress.

Mindfulness is about “making room for” the wide range of human emotion, in a nonjudgemental way.  Mindfulness acknowledges the presence of sadness, fear, anger, joy, desire, and allows it to pass.

My choice with Andrea was to ask her if she was prepared to sit with her feelings with me. I asked her to just breathe, to feel the flow of air in and out of her body, to feel the contact of her body on the chair, the sensation of warmth where her fingers lay on her leg, the rise and fall of her emotions as we made room for them to be present.

I asked her to be present with her pain too, to feel the sensations and to allow them to be experienced as they are instead of what she feared they represented. Because it wasn’t the actual sensations that Andrea was worried about – it was her fears that the pain wouldn’t ever go away, that she’d never be able to sleep properly again, that they’d escalate, that the pain would spread, that all the things she’d learned wouldn’t work, and she was remembering how she’d felt right back before we’d started to work on her pain management.

And together we made it through and Andrea said, with some surprise, that she felt the pain but it wasn’t bothering her as much.

Hadjistavropoulos, T., Craig, K., Duck, S., Cano, A., Goubert, L., Jackson, P., Mogil, J., Rainville, P., Sullivan, M., de C. Williams, A., Vervoort, T., & Fitzgerald, T. (2011). A biopsychosocial formulation of pain communication. Psychological Bulletin DOI: 10.1037/a0023876

A brief review of cognitive behavioural approaches for pain management

Cognitive behavioural approaches for pain management are not exactly the same as cognitive behavioural therapy for mental health problems.  While there are some underlying concepts that are the same, cognitive behavioural approaches for pain management include a wider range of strategies, and are far less readily defined than the very structured approach used in mental health.  In fact it has only been in the last few years that research into the process of change in pain management have been conducted.

What defines a cognitive behavioural approach?

• The assumption that people can learn to accept their chronic pain
• That people can broaden their self-concept beyond being “a patient” into being “a person with pain”
• That people can learn or re-explore skills to deal more effectively with their pain (Morley, Biggs & Shapiro)
• Managing or living well despite pain
• Pain behaviour that limits living well becomes the target
• CBT provides the skills to (ultimately) change behaviour
• Provided by any/all members of the interdisciplinary team (common treatment model)

What are the goals of this approach? (NB in no particular order!)

• To reduce pain intensity
• Increase functional activity, including work
• Reduce/rationalise use of health care
• Reduce distress
• Improve quality of life

One of the main aims of this approach is to ultimately help the person with pain become his or her own therapist – to effectively self manage pain.

How do we do this?

The exact combination of strategies and approaches that “do the trick” in this kind of approach is not yet known.  It could even be that the specific techniques that people learn may not, in themselves, be all that important.  Maybe it’s the emphasis throughout treatment that there is hope for a life even if pain is present that helps patients become people again.  Research simply doesn’t tell us this yet.

Certainly, in the years that I’ve been working in pain management, the core elements have changed little, with perhaps, the addition of graded exposure and the mirrorbox and laterality work for certain problems.

How do we begin with this approach?

• Assessing what the person with pain considers to be the main problem (the problem/s that pain “causes”, rather than pain alone)
• Asking why he or she is looking for help right now (what were the triggers? It could be the person, or someone else who has initiated the treatment-seeking)
• Identifying the changes he or she wants to see (how will the person know treatment has been successful?)
• Listing the behavioural difficulties the person is currently having

Some of the ways I do this are to ask the person “what would you be doing now if pain was less of a problem?”

There’s a reason I use that phrase “less of a problem”, because I pretty much don’t refer to pain intensity again.  Pain is likely to be present and to fluctuate throughout treatment and afterwards.  I want to model that it’s the fear of pain, rather than the pain itself that is most disabling.  Even when pain is intense, it’s more helpful to relax and go “with” the pain than be fearful and tense the body to resist it.

A first step is often to introduce a model of pain and how it affects the individual.  This is a personalised model of pain, individualised for this person – but based on what we currently know about pain from research.  Various explanations can be used, but I draw from what the person tells me about their experience of pain to generate their specific model.

Most times, it seems to help people to discuss a current neurobiological model of pain – and this is often where “Explain Pain” or similar descriptions can be really helpful.  Taken at a pace that people can manage, and using their own examples, helps people to quickly grasp information that many medical students only begin to learn in 3rd and 4th year of study.

How does this step help?

Cognitive behavioural theory suggests that people appraise or judge situations very quickly, on the basis of past learning, current arousal state, and future predictions.  Automatic thoughts then generate an emotional response.  This emotional response influences behaviour.  The relationships between these four factors can be bidirectional.

By giving people a more accurate and more realistic view of their pain – as something that can be understood (at least in part), and managed, and isn’t signalling harm – people can be far less distressed by it.  You can think of how your knowledge that a flu jab is a helpful way to prevent getting the flu and how this helps you cope with the sting of the needle, and compare it with how you would interpret and respond to being stuck with a dirty needle wielded by a hoodlum in a dark alley! The thoughts and beliefs we hold about sensations influence emotions and behaviour.

Eliciting an individual’s automatic thoughts about pain, and helping them recognise that the way they view their pain may be accurate-but-unhelpful, is one part of the cognitive behavioural approach to pain management that all members of the team need to reinforce.

The remainder of a cognitive behavioural approach to managing pain is focused on helping people engage with activities they value, and doing so in a way that (1) is manageable for now and (2) recognises the sensitive nervous system can be stirred up quickly by things other than physical activity.  Skills are developed to set goals, manage gradual increases, problem solve ways around obstacles, manage arousal levels, and work with thoughts and beliefs that become stirred up by doing things differently.

What about people who are really, really fearful of moving and avoid things? Take a look at that reference below – it’s a review of the approaches that have been used for people in this situation.  More on it very soon…

Bailey, K. M., Carleton, R., Vlaeyen, J. W., & Asmundson, G. J. (2010). Treatments addressing pain-related fear and anxiety in patients with chronic musculoskeletal pain: A preliminary review. Cognitive Behaviour Therapy, 39 (1) DOI: 10.1080/16506070902980711

Opportunity for a conversation

I had a wonderful discussion with another occupational therapist about the profession’s response to the earthquake.  “How”, she asked, “Can occupational therapists from the other end of the country help those in Christchurch?”

To further this discussion, I’ve added a new page to my blog for people to contribute their thoughts about how occupational therapists can aid in the recovery process for people in Christchurch.

Feel free to contribute, comment, say your piece – and even if you’re not an occupational therapist, but you have some thoughts about how occupational therapy as a profession might be able to help, please add your comments too.

Go here for the page…