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

Patterns of pain after total knee joint replacement

My orthopaedic colleagues are concerned about how they choose patients who will benefit from surgery, rather than ending up with poor outcomes. It’s interesting to know that knee replacement surgery is revised mostly because of pain rather than infection, dislocation or other surgical problems. Naturally, my colleagues would like to find an easy way to pick who is going to develop chronic post-surgical pain because it would avoid a lot of bother and repeated surgeries.

Pagé, Katz, and colleagues (2015) conducted this study which was nested within a study looking at postoperative gabapentin as a way to reduce the risk of postsurgical pain. People were studied for up to 12 months, which is a good length of time for outcome studies.  They then performed a complex statistical analysis called Growth Mixture Modeling, which is “a longitudinal analysis methodology in which a latent membership to discrete trajectories is estimated” (p. 462), which uses data drawn from baseline and each data point thereafter to generate groupings of individuals based on patterns identified in the data. I’m not sufficiently comfortable with my ability to describe the statistics so I’ll refer you to the article itself, but suffice to say, the researchers were able to identify four groups, and range of movement at the knee joint between the groups was no different – so it’s not the surgery that makes the difference, but “something else”.

They found four groups: (1) People with high baseline pain, but which decreased quickly after surgery, then decreased again at 12 months after surgery. This is the kind of outcome orthopaedic surgeons and patients want to see!

(2) People with low baseline pain that continued to reduce over time. Again, a group the orthopods like.

(3) People with high baseline pain but gradually reducing over time, higher immediately post-surgery than groups (1) or (2), but generally a good outcome for everyone involved. Possibly a group that needs a bit more TLC immediately after surgery than groups (1) and (2).

(4) People with moderate levels of pain before surgery and also after, but the pain not changing much even 12 months later. Not the kind of outcome that surgeons, or people having surgery want!

What factors were associated with this not-so-good outcome?

The first thing to note is that there was no difference in terms of age or gender – and this is unusual because often it is women and older women at that who have more difficulty recovering from knee replacement surgery.  People in group (4) were slower to move in presurgical functional tests, had greater anxiety (as measured on the Hospital Anxiety and Depression Scale), and had higher scores on the Pain Disability Index.

The authors consider that patients in group (4) had similar levels of acute postoperative pain to the other groups, but didn’t report any change in their score from before surgery to the first two measurement points at 4 days and 6 weeks postop. In fact, this group of people had the same level of pain intensity or thereabouts for the next 12 months. They suggest that treatments for this group of people should be given at this 4 days to six weeks stage to try to minimise their transfer from acute postop pain to chronic postsurgical pain, and they suggest these should target “prehabilitation” and “total-body physical conditioning”.

I have some questions that still remain unanswered:

• Why did this group of people have the same level of pain intensity as the other groups, but lower functional abilities before surgery?
• Could general anxiety as measured by the HADS and either health anxiety or catastrophising be associated (probably yes)?
• If a person is generally anxious, does this mean he or she is more likely to be cautious while mobilising? is this group of people at greater risk of falling/doing less/participating less in rehabilitation postop (probably yes)?
• Why did the study authors not include pain catastrophising as a measure? Would they have changed their recommendations for prehabilitation if they’d included it as a predictor?

It’s that last question that I’m interested in – pain catastrophising is associated with poorer outcomes in many different domains including orthopaedic trauma , orthopaedic surgery (Edwards, Haythornthwaite, Smith, Klick & Katz, 2009; Forsythe, Dunbar, Hennigar, Sullivan & Gross, 2008 Homes, Williamson, Hogg, Arnold & O’Donnell, 2013 Witvrouw, Pattyn, Almqvist, Crombez, Accoe et al 2009); and pain coping (Keefe, Shelby, Somers, 2010; Campbell & Edwards, 2009.

Treating people who have high levels of pain catastrophising isn’t easy but there are a number of options that might be useful. Amongst these are pain neurobiology “education” (Therapeutic Neuroscience Education or TNE) (Louw, Diener, Butler & Puentedura, 2013), mindfulness as a strategy for dealing with anxiety and pain , graded exposure to movement using a phobia paradigm rather than a graded activity one (ie addressing the thinking rather than simply physical fitness), providing people with enhanced postop recovery pathways using a combined psychological and physical rehabilitation approach.

My concern is that by ignoring the information we have about catastrophising, and focusing instead on the reduced function alone without considering why this group are less confident and move with more difficulty, one of the relevant issues won’t be addressed. While it’s easier to just use physiotherapy and exercise to mitigate disability, it doesn’t address the underlying anxiety or catastrophising that influences the amount of attention paid to pain, the meaning pain holds for people who catastrophise, and it doesn’t teach skills to deal effectively with the anxiety or catastrophising. Unless the physiotherapists carrying out exercise programmes are well-versed in psychological approaches to reduce catastrophising, I fear this recommendation may not be as helpful as it could.

 

Brander VA, Stulberg SD, Adams AD, Harden RN, Bruehl S, Stanos SP, Houle T. (2003) Predicting total knee replacement pain: a prospective, observational study. Clinical Orthopedic and Related Research, 416:27–36.

Campbell, C. M., & Edwards, R. R. (2009). Mind-body interactions in pain: the neurophysiology of anxious and catastrophic pain-related thoughts. Translational Research: The Journal Of Laboratory and Clinical Medicine, 153(3), 97-101.

Edwards, R. R., Haythornthwaite, J. A., Smith, M. T., Klick, B., & Katz, J. N. (2009). Catastrophizing and depressive symptoms as prospective predictors of outcomes following total knee replacement. Pain Research & Management, 14(4), 307-311.

Forsythe, M. E., Dunbar, M. J., Hennigar, A. W., Sullivan, M. J., & Gross, M. (2008). Prospective relation between catastrophizing and residual pain following knee arthroplasty: two-year follow-up. Pain Research & Management, 13(4), 335-341.

Holmes, Alex, Williamson, Owen, Hogg, Malcolm, Arnold, Carolyn, & O’Donnell, Meagan L. (2013). Determinants of Chronic Pain 3 Years after Moderate or Serious Injury. Pain Medicine, 14(3), 336-344. doi: 10.1111/pme.12034

Keefe, Francis J., Shelby, Rebecca A., & Somers, Tamara J. (2010). Catastrophizing and pain coping: Moving forward. Pain, 149(2), 165-166. doi: http://dx.doi.org/10.1016/j.pain.2010.02.030

Louw, Adriaan, Diener, Ina, Butler, David S, & Puentedura, Emilio J. (2013). Preoperative education addressing postoperative pain in total joint arthroplasty: Review of content and educational delivery methods. Physiotherapy theory and practice, 29(3), 175-194.

Pagé, M., Katz, J., Romero Escobar, E., Lutzky-Cohen, N., Curtis, K., Fuss, S., & Clarke, H. (2015). Distinguishing problematic from nonproblematic postsurgical pain PAIN, 156 (3), 460-468 DOI: 10.1097/01.j.pain.0000460327.10515.2d

Witvrouw, E., Pattyn, E., Almqvist, K. F., Crombez, G., Accoe, C., Cambier, D., . . . Witvrouw, Erik. (2009). Catastrophic thinking about pain as a predictor of length of hospital stay after total knee arthroplasty: a prospective study. Knee Surgery, Sports Traumatology, Arthroscopy, 17(10), 1189-1194. doi: dx.doi.org/10.1007/s00167-009-0817-x

Who are you? The effect of pain on self

My client, let’s call him Al, is a plumber. Or was a plumber. He sees himself as a hard-working, reliable guy who takes pride in doing a job once, doing it well, and not stopping until the job is finished. He’s worked for most of his adult life in his own plumbing business, something he’s very proud of. He’s supported his partner while she’s been at home caring for their two now adolescent boys. In his spare time he goes fishing, loves the outdoors and likes to wander the hills whenever he can.

Al isn’t very happy. He’s been told that his back pain, which he’s had for six months now, is not likely to go away. He’s been having treatments from physiotherapy, had a return to work programme developed by an occupational therapist, tried medications and injections but nothing has taken his pain away. He’s slowly stopped seeing his mates, isn’t sleeping well, hasn’t been out fishing in months, and he’s even had trouble keeping from shouting at his boys.

Al doesn’t sound all that different from many of the men I’ve seen in pain management. Some people call him “unmotivated” because he’s stopped thinking about goals for the future, and does his exercises in a half-hearted sort of way. He doesn’t always attend his appointments. It’s hard to know whether he’s actually doing his home exercise programme. A far cry from the “hard-working, reliable” man who runs his own business.

What’s going on? We could say he’s depressed, and maybe he is. But more importantly, why is he depressed? He doesn’t describe his pain as anything more than a 5/10 where 10 is the most extreme pain he can imagine. He’s still getting an income from his worker’s compensation, he’s still in a loving relationship and in their own home. But he’s not a happy man.

We’ve all met an Al, I’m sure. Superficially he looks fine, but a throwaway comment nails it: “I’m just not myself any more, I want things to be normal”.

Self-concept

All of us have an idea of who we are. A self-concept is a set of representations about who we are, what we do, how we do it, and why we do it. We all have several self-concepts – the “actual” self, the “ideal” self (who we would like to be), the “ought” self (the person others think we should be), the “feared” self (the person we really don’t want to be) and so on (Higgins, 1999; Markus & Nurius, 1986). Our sense of self is based on a collection of memories, a pattern of behaviours that we’ve developed and continue to develop as we aim to be the person we want to be.  Our sense of self guides our choices and the way we do things.

What happens when we can’t do things the way we think we “should”, or the way our sense of self would guide us to? Let’s think about this for a minute.

Al is used to getting up early in the morning, usually about 6.00, so he can get out to the site he’s working on that day and begin work by about 7.30. He prides himself on being at work, ready to go, before his apprentice gets there. He’s always organised, got his gear ready and in the truck with a cup of tea all sorted so he can plan his day.

Since he developed his back pain, Al’s had trouble getting out of bed before 8.00. He’s always tired. He’s not sleeping. He’s the last one in the house to get up, and he can’t even get to the work site until 9.00 because his body is sore and he can’t seem to wake up. He’s getting picked up by his apprentice who keeps giving him grief over not having his gear ready in time. He’s not the man he used to be, in fact, he’s become the man he swore he’d never be, a compensation bludger. He doesn’t like who he’s become. He feels lazy and useless.

Achieving self-coherence by re-occupying self

One of the neglected aspects of pain management is how to help someone deal with the changes to his or her sense of self. Life becomes chaotic when assumptions we make about the world no longer apply. The main concern of someone who is learning to deal with chronic pain is how to make life and self make sense again, to regain some coherence.  When they successfully solve this problem, it’s like all the various aspects of “self” have been reassembled. This is usually a new “self”, one that incorporates pain and the things that need to be done to accommodate pain while still expressing important aspects of “who” he or she is.

The process of learning to live comfortably with a new self is, I believe, a process of re-occupying self. Making a new self that feels recognisably “me”, doing the things that make “me” feel like myself, including some of “my” usual standards and attitudes and interests.

Yet what do we so often do when we doing pain management? We tell people like Al to “relax” and “pace” (Al learned as a child that you don’t stop until the job is done). We tell him he needs to move in certain ways (as a plumber? under buildings, in roof cavities, hauling gear out of the truck, carrying it over building sites). We suggest he needs to not do some things (work for the whole day without a break), but ask him to do other things (carry out a set of exercises three times a day). We say he needs to be back at work, but he doesn’t feel he’s pulling his weight.

What can we do?

I think we need to take some time to understand Al and what’s important to him. Not just the occupations (activities) but also the way he does them, and why he does them. How do they contribute to his sense of self? And then we need to work with him to give himself “permission” to do things differently – for a while. It’s like putting on a temporary “self”, a “rehabilitation” self. We can revisit this “rehabilitation” self as time goes on, and help him identify important values and occupations so he can begin to feel more like himself. Perhaps help him develop a new self that lets go of the old “normal” but includes some of the most important values expressed differently. I call this flexibly persisting – as Antony Robbins says, “staying committed to your decisions, but staying flexible in your approach”.

BTW – if you’d like to help me share this concept, you can! The idea of re-occupying self emerged from my PhD studies, and I want to present this at the Pain Science in Motion Colloquium in Brussels at the end of March. If you’d like to help me raise the airfare to get there (and back!), go to Give a Little and my page “Live well with pain”. Every little bit counts! I’ve had some wonderful people help me get almost half the money I need – will you help me get the rest? Thank you!!

 

Beekman, Claire E., Axtell, Lois, Noland, Kathy S., & West, Jaime Y. (1985). Self-concept: An outcome of a program for spinal pain. Pain, 22(1), 59-66. doi: http://dx.doi.org/10.1016/0304-3959%2885%2990148-4

Charmaz, K. (2002). The self as habit: The reconstruction of self in chronic illness. Occupational Therapy Journal of Research, 22(Suppl1), 31S-41S. doi: dx.doi.org/10.1177/15394492020220S105

Hellstrom, Christina. (2001). Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain. Psychology & Health, 16(1), 111-124. doi: http://dx.doi.org/10.1080/08870440108405493

Higgins, E. Tory. (1999). Self-discrepency: A theory relating self and affect The self in social psychology (pp. 150-181). New York, NY: Psychology Press; US.

Markus, Hazel, & Nurius, Paula. (1986). Possible Selves. American Psychologist, 41(9), 954-969. doi: dx.doi.org/10.1037//0003-066X.41.9.954

Will you help me get to Brussels?

One of the most important aspects of research is getting the information out where it can be used. One of the ways to do this is by attending conferences – and the one I’m hoping to go to is in Brussels, Belgium, and is specially set up for new PhD researchers interested in pain research. It’s designed to give plenty of opportunity for researchers to meet other researchers, get to ask and answer questions, and learn ways of making a real impact on people’s lives.
There’s only one problem, and that is, as ever, money.
Frankly, I need some help to raise funds to pay for the flights to and from New Zealand and Brussels.
I’ve set up a “Give a little” page where, if you think I’m doing the right thing in pain research, you can donate.
This is the link to Live Well with Pain

It’s a site set up so people can ask for help and others can help. I like it. There are heaps of pages and causes and reasons people need money.

My reasons are simple. I’ve been working part-time for the last couple of years while I’ve been completing my PhD. I didn’t have a scholarship because I’ve always worked, and I love my teaching job (I work at the University of Otago, Christchurch, teaching postgraduate pain papers)

I haven’t been eligible for funding to travel to the Pain in Motion Colloquium from my University because, now that I’ve completed my PhD, I’m not able to access funding available for postgraduate students.

I’m looking for $4000 to pay for airfares and accommodation in Brussels. The conference is at the end of March, and I need to buy tickets by the end of February.

I think I’ve found out some interesting things as a result of my PhD. I’ve listened to people living with pain tell their stories of success. I think health professionals can learn from this research, and I really want to be able to share my findings, and learn from some of the best researchers in the world. I’ve been committed to blogging about research because I think findings need to get out from behind journal covers and into the world of practitioners.

I promise to keep telling you about research findings, and to keep you updated on pain research – and I’d be really grateful if you’d consider giving even just a little.

 

How to spend money you don’t need to

I’m a shopper. I love to shop with a pocket full of money and buy lovely new things! I don’t even need to spend the money – just knowing I have it there to spend is enough to send me into raptures. Now one thing I have never heard in healthcare is that there’s plenty of money. Not once. I can’t recall a time when I’ve heard “Oh let’s just go and spend”. Instead I hear a lot about “Lean thinking”, and “efficiencies”, and “cost saving” – and “No, we can’t do that because it needs an up-front investment and the payback won’t be for years”.

What if I could show where there are hundreds of thousands of dollars going to waste that are also contributing to poor health outcomes and increased risk of complication?

Well, as it happens, I have just such a case. It’s when a person goes to the Emergency Department during a bout of back pain.

A group of researchers (Schlemmer, Mitchiner, Brown & Wasilevich, in press) examined the records of people attending ED for low back pain over the course of one year, from 2011 – 2012. They looked at the indications for receiving imaging for the preceding 12 months. Over 14,838 events were recorded – and of this group, 51% had no indications for imaging. This group attended ED less often, had fewer hospital stays, had lower rates of healthcare visits and had fewer appointments with specialists. BUT among this group 30% had imaging, 26% had advanced imaging (eg CT or MRI).

Overall, nearly 30% of people presenting to ED with low back pain are likely to have an Xray, and 10% will go on to have advanced imaging.

What this means is that there are a group of people who really don’t need to have imaging, according to our best evidence, but end up having it. We know that most people with back pain are not going to benefit from having X-ray, CT or MRI because these images either don’t show anything useful (no image shows pain) or show something irrelevant that might look interesting but is actually unrelated to back pain. We know this, and there have been numerous treatment guidelines and algorithms and education indicating not to give imaging for low back pain without neurological changes.

Yet this paper shows very clearly that this practice is still going on.

The authors point out why changing practice is important: unnecessary imaging increases exposure to radiation, increases the risk of getting surgery (that’s not likely to change the low back pain outcome), and costs a lot – in this case, the authors suggest $600,000 could be saved in the two years in which this study was conducted. That’s a lot of money – it might even pay for a clinician or two!

I’m interested in why this happens.

ED is a busy place. It’s set up for people to be seen urgently, where the focus is on saving lives, where every minute counts. It’s not the place for people with chronic problems, complex problems (particularly complex psychosocial problems), and it’s not the place for taking time to consider the long term implications of any action. People working in ED care enormously about their work, know they’re making a difference – but find it very difficult to deal with the complex chronic health problems of those with chronic pain. Particularly those with chronic pain and associated mental health problems.

It’s not the place to see people with chronic pain. And yet, within the top 100 “frequent attenders” to ED, most will have a mental health problem, and most will have chronic pain.

To me this suggests there are a lot of people in the community who have unmanaged chronic pain. Or poorly managed chronic pain.

It’s not that people shouldn’t get treatment – but it’s the “better, sooner, more convenient” and the “right person, right treatment, right time” that needs to be addressed.

Let’s say we employed four specialist clinicians to work in ED to help people with chronic pain. Four clinicians at roughly $80,000.  That’s $320,000.

If every person with chronic pain flare-up was seen by a clinician, connected with appropriate chronic pain services, and a management plan developed to help that person stay at home instead of venturing into ED, I volunteer that there’d be a saving. Not only a financial saving, but an emotional one – and not just for the person attending ED! But for the staff working there, the ambulance staff assisting, the family members of the person, and his or her primary care team.

Why doesn’t this happen? Well I think it’s mainly because chronic pain isn’t often given as a primary diagnosis, and certainly isn’t recorded on ED admission forms. That makes it invisible. The costs of admissions for chronic pain are therefore hidden. Chronic pain doesn’t get much airtime, and it’s not sexy. Making a change to how ED manages people with chronic pain requires an upfront investment – and every other area in health is crying out for money, usually much more loudly than chronic pain! And there’s the issue of relative power – a medical solution to chronic pain doesn’t exist, it’s mainly managed by allied health. We’re not a vocal group, we have limited political clout, and we’re poorly represented within healthcare management.  Chronic pain management also requires a team, and a team working in a way that is quite different from most teams because it’s interdisciplinary rather than multidisciplinary. Chronic pain management takes time. Results/outcomes are quite small.

But when we’re being exhorted to save money in health, I can’t see why changing practice around unnecessary imaging can’t be an effective first step.

http://www.choosingwisely.org/doctor-patient-lists/imaging-tests-for-lower-back-pain/

Schlemmer, E., Mitchiner, J., Brown, M., & Wasilevich, E. (2014). Imaging during low back pain ED visits: a claims-based descriptive analysis The American Journal of Emergency Medicine DOI: 10.1016/j.ajem.2014.12.060

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.

Being: or doing?

I’ve posted a couple of times on goal-setting here and here and here.

You might get the message that I spend my time bimbling along without focusing on anything in particular. That’s just so not true! I definitely have things I want to achieve – and I achieve them (mostly – I never did learn German except to decipher my Burda pattern instructions!). It’s just that I think health professionals can use goals to clobber people with, and I don’t think that helps anyone, least of all the person in the middle.

Here are some more good reasons not to focus on goals:

1. Goals can make all our efforts focused on the goal, and when the goal’s complete the actions stop. Goals can make daily actions things we do as a means to an end rather than something we do because we think they have value. Goals can make those actions temporary, a chore.
2. Goals are external outcomes we want to achieve. That means achieving them is often out of our control. If I want to get a new job there are things I can do but in the end an employer must want to hire me. There’s nothing I can do to get a particular job if the employer just doesn’t want to employ me.
3. When a goal takes a long time to reach, we can lose interest and give up. Then all that work is lost.

So, if I don’t just bimble along, randomly doing whatever takes my fancy, and I don’t set goals, what do I do?

I read a fabulous post by Nadira Jamal, The Belly Dance Geek

In it she’s looking at building a daily dance practice. Dancers need to practice, but many amateur dancers do a boom and bust approach to dance practice. “There’s a performance coming up – must practice! must practice!” Then once that performance is over, dance practice stops. Only to begin again once there’s another performance! No wonder some of us never get beyond struggling with hip drops. Nadira’s reasoning is that when we focus on “achieving the goal”, practice is a means to an end, not a means in itself.  Now the reason I want to dance is that it’s part of who I am, an expression of myself. So, you might wonder, why on earth don’t I practice as often as I can?  Well, it seems too hard to fit it in, I get bored, there are other people around, it’s too hot, it’s too cold, I’m still in my pj’s, I’ve had my shower already and don’t want to get all sticky…

People we work with have similarly good reasons for not doing those exercises we’ve recommended.

Instead, Nadira recommends using themes in dance practice. Picking some areas of dance to work on and working on them – selecting from a theme gives more variety for practice, they become a focus but not a prescription, and we choose them. A theme might be arms – and thinking of all the different ways I could improve my arms in dance. Pick a couple of activities, use these as a “menu”, then when you begin to practice, choose the one or ones that appeal that day.

Translating this into pain management, a theme might be “ways to down-regulate my sensitive nervous system”. The are a heap of ways to do this: mindfulness, yoga, walking in the garden, reading a good book, stretching, self-hypnosis. What a range of things I can choose from each day! I can write them all down, then depending on how I’m feeling that day I can choose the one that suits me the most.

I think it’s good to begin the day by reviewing my diary – and that when I plan my actions. I’ve decided, after listening to Nadira, to practice every morning. It’s easy because I just have to get out of bed five minutes earlier than normal. And yes, I’m only doing 5 minutes at the moment. For those who don’t know, I am NOT a morning person. And 5 minutes means I KNOW I can do it, even when I’m feeling sluggish. And it’s tied to getting up – usually I read, so I just finish reading 5 minutes early. I know the things that are likely to derail me from doing the practice, so I have my music ready, stay in my pj’s to do it (a vision that is not a sight for sore eyes), and go straight to the shower after. I’ve chosen themes for practice, and I focus on those.

With a client, I might look at “exercise” and consider all the activities that could be included in “exercise”. Not just the gym, but also gardening, vacuum-cleaning, dancing, walking along the beach, taking Sheba-the-wonderdog for a walk, throwing a stick for her. So flexible I can pick something to do each day.

The key, I think, is looking at why we think someone “should” do whatever it is we want them to do. Why should someone do exercises? Is it to be able to do something else? Yes? Then choose a number of activities that will contribute to doing that thing. Let the person decide exactly what to do each day.

Here’s an example: if we want someone to get fitter because this will help them return to work, list all the ways we (and the person) can think to get a bit of exercise into their day.

1. Park the car a bit further away from home today, and walk to the park.
2. Use the stairs instead of the lift.
3. Take a bike ride around the blog.
4. Take the dog for a walk.
5. Walk along the beach with your partner.
6. Build 5 minute exercise “snacks” throughout the day (I use Pomodoro technique to do this)

While these aren’t earth-shattering in intensity, for someone who is just not that into exercising, this might be a good beginning. And it allows for variety, builds on existing habits (daisy-chaining) Beginning where we are, allowing for variety and interest, and focusing on actions rather than goals gives us pleasure in the doing.

If we can’t say why we think they need to, for example, increase single leg standing balance, then seriously folks, why are we getting them to do it? If we don’t know why someone should sweat it out on a bike at a gym, then why do we think it’s a good thing? Is a spin class just for the thrill of the spin? If so, does the person enjoy it? Yes? Then fine, go for it. No? If it’s to be fit enough for something else – what other ways could that person “get fit enough”?

There is always more than one way to skin a cat, as they say. Don’t get trapped into getting your patients hooked into doing The One Exercise just because you think it’s a good thing. I’m pretty confident that this is the best way to lose people. Let’s instead focus on being, and the doing will happen in a myriad different ways.

One gap to fill in pain management

There have been some great gains in pain neuroscience over the past few years – we know more about mirror neurones, cortical smudging, “placebo” and how cognitive behavioural therapy changes the brain. It’s sexy. There are also some rather unsexy areas of pain management, and one of these is about how people learn about their chronic pain.

It takes most people several years to get a definitive diagnosis for even well-known inflammatory problems like ankylosing spondylitis (Salvadorini, Bandinelli, Delle Sedie, Riente et al, 2012) – nine years is a long time to have mysterious pain that no-one seems to have a handle on. We also know that people with pain want some very specific things from their consultations: a definite diagnosis, acknowledgment of pain, acknowledgement of expert knowledge from the person with pain, to be seen as an individual rather than a diagnosis (Haugli, Strand & Finset, 2004).

My research looked at the ways to cope used by people who live well despite their pain. The first part of living well involves making sense of what is going on.

When a person first experiences pain, mostly it’s thought of as a typical acute pain problem. When the pain doesn’t settle down, or if it feels different from other experiences of pain, people will begin searching for information. Eventually, and this can take a long time (years), there’s a match between “what I feel”, “what I’ve learned” and “a label”. The label represents a lot to people living with pain. It means validation (I’m not going crazy, I’m not imagining it, I’m not being weak), it means the problem is understandable, and it means someone knows what is going on.

At the same time as getting external validation for the problem, people are trying to work out what their pain does on a day-to-day basis. Where do I hurt? What does it feel like? What’s normal? Over the past few years as apps for our devices have been developed, these are useful tools people can use to track their pain from day-to-day.  I’ve seen incredibly detailed diaries where people have written down their pain intensity, and what they’ve done for months and months in an attempt to get symptom understanding.

And then there’s the need to predict the effect of chronic pain on what needs to be done in life. And this is a gap I think we need to fill.

When people are busy learning about their pain, and at least until they have diagnostic clarity, life seems to get put on hold. It’s a recognised feature of this phase of having pain, life can become “a viscous long-lasting now”, with temporal disorganisation (Hellstrom & Carlsson, 1996; Hellstrom, 2001).  In other words, people’s sense of the future and moving towards this gets disorganised because the world that used to be predictable has become chaotic.  They’ve lost the ability to dream about what might be there for the future, because now dominates everything.

This occurs because humans make plans based on a sense of self, of who we are, what we do, our contributions and roles. When chronic pain is present, people’s sense of self (the collection of knowledge about what-it-feels-like-to-be-me) is disturbed because all the everyday things they need to do are more difficult. Pain intrudes.

I’ve looked for any systematic tools to give people so they can learn how to predict the effect of their pain on daily activities (occupations, to use the language of occupational science and occupational therapy).  I haven’t found anything yet.

The whole idea that someone might want to, or need to, develop this kind of “somatic awareness” is counterintuitive. I mean, most programmes ask people to complete questionnaires that are used by clinicians to identify their problems and what therapy should target. Much of therapy is intended to extend what people can do, to help them go beyond their existing beliefs and limitations. We do this by engaging people in physical activities such as a circuit gym or a set of exercises that gradually gets increased over time.

BUT How does knowledge drawn from a set of exercises, or a circuit gym, transfer to the daily life patterns of a 34 year old builder? Or a 28 year old bank clerk? Or a teacher? Or a retired merchant navalman?

“Somatic awareness” as a clinical need in people with chronic pain is not a new idea. Strong and Large (1995), and Large and Strong (1997) identified that people who were not seeking treatment for their low back pain used “somatic awareness” to titrate their activity levels, and this formed a large part of their coping approach. Crowe, Whitehead, Gagan, Baxter, Pankhurst and Valledor (2010) also found that people “listen to their body” so they can adjust what they expect from themselves. Fisher, Emerson, Firpo, Ptak, Wonn and Bartolacci (2007) identified that by understanding the variability of pain, people could modify their occupational engagement, as did Persson, Andersson & Eklund (2011).   There are many more.

I think an obstacle to developing this aspect of self-management might be our fear that by asking people to notice what is going on in their bodies, we are reinforcing “pain behaviour”. I’m not sure that this is in fact what happens, but it’s an area for future research. The behavioural paradigm still has a strong influence on how we think about attention and pain. And we’ve all probably seen those people who fixate on pain fluctuations to the point of obsession, and usually because they’re keen to do whatever it takes to reduce the pain.

Somatic awareness, making sense, symptom understanding and occupational existing are tools used by people who are naive to pain management. Maybe in our efforts to help those who have a great deal of trouble with their pain, we’ve forgotten to build on the strengths used by those who cope well.

 

Allegretti, Andrew, Borkan, Jeffrey, Reis, Shmuel, & Griffiths, Frances. (2010). Paired interviews of shared experiences around chronic low back pain: Classic mismatch between patients and their doctors. Family Practice, 27(6), 676-683. doi: http://dx.doi.org/10.1093/fampra/cmq063

Crowe, M., Whitehead, L., Gagan, M. J., Baxter, G. D., Pankhurst, A., & Valledor, V. (2010). Listening to the body and talking to myself – the impact of chronic lower back pain: a qualitative study. International Journal of Nursing Studies, 47(5), 586-592. doi: 10.1016/j.ijnurstu.2009.09.012

Fisher, G. S., Emerson, L., Firpo, C., Ptak, J., Wonn, J., & Bartolacci, G. (2007). Chronic pain and occupation: an exploration of the lived experience. American Journal of Occupational Therapy, 61(3), 290-302.

Haugli, Liv, Strand, Elin, & Finset, Arnstein. (2004). How do patients with rheumatic disease experience their relationship with their doctors? A qualitative study of experiences of stress and support in the doctor-patient relationship. Patient Education and Counseling, 52(2), 169-174. doi: http://dx.doi.org/10.1016/S0738-3991%2803%2900023-5

Hellstrom, Christina. (2001). Affecting the future: Chronic pain and perceived agency in a clinical setting. Time & Society, 10(1), 77-92. doi: http://dx.doi.org/10.1177/0961463X01010001005

Hellstrom, Christina, & Carlsson, Sven G. (1996). The long-lasting now: Disorganization in subjective time in long-standing pain. Scandinavian Journal of Psychology, 37(4), 416-423. doi: 10.1111/j.1467-9450.1996.tb00673.x

Large, Robert, & Strong, Jenny. (1997). The personal constructs of coping with chronic low back pain: is coping a necessary evil? Pain, 73(2), 245-252. doi: http://dx.doi.org/10.1016/S0304-3959(97)00100-0

Persson, Dennis, Andersson, Ingemar, & Eklund, Mona. (2011). Defying aches and revaluating daily doing: occupational perspectives on adjusting to chronic pain. Scandinavian Journal of Occupational Therapy, 18(3), 188-197. doi: http://dx.doi.org/10.3109/11038128.2010.509810

Salvadorini, G., Bandinelli, F., Delle Sedie, A., Riente, L., Candelieri, A., Generini, S., . . . Matucci-Cerinic, M. (2012). Ankylosing spondylitis: how diagnostic and therapeutic delay have changed over the last six decades. Clinical & Experimental Rheumatology, 30(4), 561-565.

Strong, J., & Large, R. (1995). Coping with Chronic Low Back Pain: An Idiographic Exploration Through Focus Groups. The International Journal of Psychiatry in Medicine, 25(4), 371-387. doi: 10.2190/H4P9-U5NB-2KJU-4TBN

Goals? I loathe them: What to do instead

I dislike that acronym “SMART” goals. I can never decide whether it’s meant to mean “Specific, measurable, achievable, realistic and time-bound” or “specific, manageable, active, realistic and timed” And if it’s either of those, what’s the difference between achievable and realistic? Or is it meant to be “relevant”?

In previous posts I’ve established good reasons to have a focus for therapy. Unless the focus is something valued by the client, it’s either unlikely to get done or it’s not their goal and they’re going along with it to keep you happy. Goals, targets or focus are useful, and the logic goes that unless you have them you won’t know where you’re going or when you’ve got there.

I’m not going to argue against the idea of having a focus to therapy. I just think there are risks in having goals, like some sort of checklist that says “If you achieve this, you’re all good”.

Seriously, that doesn’t work in real life. That’s the same kind of logic that says “if I just buy enough things I’ll be happy”, “if I just earn a bit more I’ll be happy”. While there’s a bottom line below which it’s hard to think beyond survival, above that line, having stuff, and even doing things as an end in themselves doesn’t fulfill for long.

What gives forward momentum, enrichment, fulfillment and can’t be ticked off like some shopping list is recognising that life is actually a whole series of actions and events that, when we think back on them, make up a good life. The richer events and experiences and actions feel good and fulfilling. The empty routine and humdrum things feel deadly dull and empty.

When I think about the purpose of therapy my focus is helping people to live the kind of life they value, doing the things they believe are important. Given I don’t want to be a long-term feature in a client’s life (for all I love them, I’d rather they were doing it themselves), my focus is on helping them work out what makes a rich, fulfilled life they can look back on and feel satisfied. My job is to help them develop skills and strategies to carry out the actions needed to live a life aligned with what they value.

Let me unpack this a little.

Many people I see place value on being a good parent, a loving partner, a reliable employee. When I see them, their pain has interfered with doing the things they believe demonstrate “being a good parent” or “being reliable”. Pain has moved in to their lives, and come and sat on their laps right in front of their face so that all they can see is pain.  If I ask someone in this state to “set goals” they laugh, rather sarcastically sometimes, and say they don’t have goals, they can’t think of anything and what’s the point anyway. Perhaps not in those words, but the meaning is clear.

Instead, I ask them “what would you be doing if your pain was less of a problem for you?” Sometimes I’ll even hand over a plastic fairy wand I have, and suggest they dream a little. It’s then that the passion takes over – they’ll say “I’d be out working, having fun with my friends, caring for my family” – and the list goes on! If I stopped there, though, I’d be holding a tantalising dream just out of reach, which is cruel, so I don’t. Instead I ask why these things are important.

That’s how I find out that “family is everything”, “I just love creating”, “I need my friends”.

Then I switch tack for a moment and ask them “How well is what you’re doing to deal with your pain right now working to help you be the kind of person for whom family is everything? How well is what you’re doing with you pain helping you create?”

The reason for this tactic is to help generate what Acceptance and Commitment therapists (ACT) call “creative hopelessness“. Because motivation to change comes from inside – that it’s important enough, and the person is confident that change can happen.

I then suggest two things: 

1. Is keeping pain happy more important than family ?(and yes, I know I’m personalising and objectifying pain here, and yes it’s an experience not a thing, but it works OK!)
2. What would happen if you made a little room for pain to be there while you’re doing things that contribute to you being the kind of parent you want to be?

What I mean by this last statement is that pain can interfere with doing that things that help you feel you’re being a good parent. And that can lead to either completely abandoning those activities, or doing them while clutching resentfully to “the pain that interferes”. What if you attended to the value or importance of being the kind of person who is a good parent instead of focusing on the irritation, frustration and anger of having to bring pain along for the ride?

• For many people, the things they believe contribute to “being a good parent” far exceed what they can currently achieve. So they give up and get demoralised. They both have their pain AND they don’t manage the very things they most value.

Now it’s here that I could begin to “set goals” and suggest we work towards them using all the traditional elements of goal setting. And that probably has excellent value. But here’s the catch: often we hold very strong internal rules about how these things should be done so that unless we can do them exactly the way we think they should be done, we’re not satisfied. And for many people this fails to recognise that as time goes on, life too goes on, and we change the way we do things to accommodate new habits or capabilities. So I try to begin a process of developing flexibility – and using the values a person identifies as a compass rather than a checklist.

What would happen if we thought a little about the range of things people might do to convey “being a good parent”? Maybe it would mean going to the children’s sports games and being a spectator. Maybe it would mean making lunches, helping to do homework. Maybe it would include listening while a kid tells you about his or her day. Many of these things can be done with pain present. Many might require altering how they’re done to accommodate having pain present but provided that they express the underlying value of being a good parent, can be fulfilling.

What’s important is less about the what a person does, and a whole lot more about why and how they do it.  When “being a good parent” becomes the direction we live (because we can never tick the box that says “being a good parent” is complete), then we focus on why and how we do it. Attention goes away from “but pain stops me”, and towards discovering all the ways “being a good parent” can be lived.

Often it’s through doing this that people seek new coping strategies so they can extend what they do. People may “set goals” or future actions they want to take but instead of feeling frustrated and dissatisfied, they begin to to take actions that bring them closer and closer to living the life they want to live. And that, my friends, is what I think “goal setting” is about.

This festive season is a good time to consider what’s important in your life. What actions are you taking to live a value-filled life?

Stepping out of the glue: How to generate goals

Chronic pain has been called one of the “most powerful and insidious disruptors” of routine, habit and wellbeing (Karoly, Okun, Enders & Tennen, 2014).  When a person experiences pain, a whole range of mechanisms come into play and work together to use thinking and processing space, and especially those areas we use when we’re developing and achieving goals.  When people are first trying to make sense of their situation, they can find it hard to think about future goals and plans, and instead focus on trying to solve the problem of pain – many people call this time like being in limbo (McGowan, Luker, Creed & Chew-Graham, 2007).

It’s not surprising, then, that when clinicians begin to work with someone who has had pain for a very long time, it can be very difficult for them to think of a “goal”. After all, not everyone sets goals anyway (I heard somewhere that it’s about 3% of people – but I can’t find the research to support it). But in pain management, funders often ask clinicians to work with the client to “set goals” for therapy from the first day as a way to ensure a client-centred programme, increase motivation, and monitor outcomes. This can be a problem in a couple of ways: first of all, if the person doesn’t have goals because they’ve been in “limbo land” for a long time, and feel pretty demoralised or their goal relates to “getting rid of the pain”; secondly, if the person has vague ideas that are difficult to set into the typical “SMART” formula (incidentally, I really don’t like that acronym!); thirdly, if the person doesn’t have strong ideas about what they want from therapy, the clinician can set the goals for them, and perhaps not those the client is really all that interested in; and finally, it’s hard to set goals without having spent some time listening to and collaborating with the client.

Pain can be experienced as a major obstacle to motivation for setting goals. Negative mood associated with pain can reduce motivation to think ahead, to dream. Morning pain in particular can make it more difficult to want to do things, unless those activities are important, there are relatively structured ways to pursue them, and they don’t need much planning.  This can influence whether a person gets out of bed to go to work, or the gym, or take the kids to school. In a daily diary study, Karoly, Okun, Mooris, Enders and Tennen (2014) found that people with relatively high overall pain over a two-week period, but not necessarily just in the morning, and who have chosen to stay working, often also carry out their “lifestyle” goals in the afternoon. They suggest this could be because goals that are further out in time, and the positive feelings associated with achieving work goals keep them motivated. But they also found that even then, on the days people had more than their usual pain in the morning, they were less inclined to do as much.

The implication of this finding by Karoly and colleagues is that people who experience a “high pain” morning might need some reminders of the pleasure they get when they achieve goals – perhaps to pay attending to people and places that support their goal achievement. Helping people develop goal planning skills might also be useful – do the thinking when you’re feeling a bit more positive and can see beyond “now”, then when pain is higher, the cognitive demanding work is already done and the reminders help to generate positive emotions to encourage doing them.

OK, so we know some ways of helping people keep motivated, but what do we do to help people set them in the first place?

People are motivated by both push and pull factors. We want to move towards things we experience as good, and away from things we don’t enjoy. When pain is present, not only does it become hard to think straight, it doesn’t feel like it will ever change. So we need to help people dream a little. One way I do this is ask “What would you be doing if pain wasn’t such a problem for you?” Note that I’m not saying pain isn’t there – but that it’s less of a problem. Sometimes I’ll use a plastic magic wand and hand it to the person, asking them to dream a little. Other times I’ll add in “What gives you joy and pleasure? What makes you lose your sense of time and place? What gives you a sense of satisfaction when it’s done?”

These questions begin to identify activities in which a person might experience “flow” – Mihaly Czikszentmihalyi.

Another way is to ask the person what they need to, or want to do, perhaps using the occupational therapy broad groups of “productivity/work”, “leisure/fun”, and “self care” as prompts.

I’ve also found that by asking “what’s important in your life” can be a good way to generate personal goals. Importance indicates that the person places value on it. Values are important and lasting beliefs or ideals shared by people about what is good or bad and desirable or undesirable. Values underpin ACT (Acceptance and Commitment Therapy), because instead of setting goals, which can be achieved, values are like a compass – things we do (actions) allow us to move closer towards important values, and we never completely achieve them. They’re directional and aspirational, and allow us to do difficult things that have short-term negative consequences, just so we can move towards a better long-term consequence (van Huet, Innes & Stancliffe, 2013).

How can you use this in therapy?

Well, if a person really values family, and being a good Dad, anything that Dad does to enable him to be a better Dad will be motivational. So you can ask “What could you do today that would take you one step closer to being a great Dad?” And use whatever that might be as the foundation for a goal. Then you can go on and use all the other great goal-setting strategies like specific, measurable, achievable, relevant, and so on.

This doesn’t mean that doing that thing will be easy – far from it! But it will make achieving it more relevant, powerful and motivating. Working with the challenges is why you are a therapist.

 

Karoly, Paul, Okun, Morris A., Enders, Craig, & Tennen, Howard. (2014). Effects of Pain Intensity on Goal Schemas and Goal Pursuit: A Daily Diary Study. Health Psychology, 33(9), 968-976.

McGowan, Linda, Luker, Karen, Creed, Francis, & Chew-Graham, Carolyn A. (2007). ‘How do you explain a pain that can’t be seen?': The narratives of women with chronic pelvic pain and their disengagement with the diagnostic cycle. British Journal of Health Psychology, 12(2), 261-274.

van Huet, Helen, Innes, Ev, & Stancliffe, Roger. (2013). Occupational therapists perspectives of factors influencing chronic pain management. Australian Occupational Therapy Journal, 60(1), 56-65.