NB: The following rant does not reflect the opinions of my employers, colleagues, family or pets! It is MY opinion!
I feel rather weary today, having come to a realisation that although pain management as a field of work has become much more recognised, there are some serious differences of opinion around approach and priorities between various members of the health care team. I could list my current gripes and take up more than one screen on this blog, but I’ll try and confine myself to whining about just one: the lack of recognition of ‘real world’ functional outcomes.
What I mean is this – we can have the widest range of self report questionnaires covering all the variables in the world from pain intensity, pain quality, pain location to self efficacy, depression, distress, thoughts and beliefs – but if we don’t see some sort of change in what a person does from day to day, then what is the point of our treatment?
I readily recognise how hard it is to measure real world functional change. It’s much easier to use a questionnaire to tap into a single variable like ‘how much pain do you feel?’ I also know that there are many reasons why someone might say they feel ‘better’ but make no changes in what they do – after all, multiple intervening variables influence even a simple thing like whether someone is sleeping better let alone whether someone needs less home help – but at the same time I can’t help thinking that a change of a couple of points on a self-report measure of kinesiophobia actually makes a lot of difference to a person’s life in the greater scheme of things.
Why is it important? Well, in the move to demedicalise much of pain management (although some of us would debate whether this has, in fact, occurred!), psychology has moved into ascension. I love psychologists, know quite a few very well, and I even have a degree in psychology – but at the same time, psychological factors are only part of a person’s presentation when they’re having trouble with their pain. Psychologists have contributed much to our understanding of pain and pain management – notably in the measurement of factors that are important in the experience of pain, and in expanding our understanding of psychosocial factors.
You may run the word ‘psychosocial’ together, as I am known to do, but the model we use for much of pain management is a cognitive behavioural approach, not cognitive behavioural therapy. And a cognitive behavioural approach refers to several assumptions about how people go about making changes in the face of adversity, and definitely includes behaviour. In my dictionary, behaviour is all about what people actually do…or in other words, their function. Measuring ‘real world’ behaviour has lagged somewhat behind the ever-expanding range of pen-and-paper assessments. Maybe this is something occupational and physiotherapists could attend to as a matter of urgency.
Medical people are great too – they help determine any diagnosis (when there is one), they make sure anything ‘fixable’ is ‘fixed’, and often given that ‘white coat’ air of respectability to admonitions from other more lowly beings who say ‘it’s OK to move, you won’t harm yourself’. At the same time, medical people can be amongst The Worst in a chronic pain management team at prolonging the use of pain reduction approaches (even to the point of quite invasive procedures such as injections and high-tech gadgets – spinal cord stimulator anyone?).
Medical people can be really unhelpful when they see someone who is experiencing a flare-up of pain and immediately start down the track of increasing medication, or reviewing medication or doing another investigation or suggesting another procedure. I wonder sometimes if medical people are scared of allowing anyone to experience pain, as if people will perish if they have exacerbations of their pain .
The thing is, it’s not the pain intensity itself that is the problem. Study after study shows that disability and interference from pain doesn’t vary systematically with pain intensity, what does have a great influence on function – is beliefs and attitudes toward having pain. What our focus needs to be is on reducing distress about having pain – and then on doing important functional activities.
While psychologists and some medical people are pretty good at helping people develop greater tolerance to having pain – the people in the health care team who know the most about doing activity or being occupied are occupational therapists and physiotherapists.
If a person can tolerate their pain (by being less distressed about it) what is the point if they then can’t or don’t do more? At the very least they can do less of the not so good stuff like visiting doctors and using prn medications and being a patient!
I see there are some problems in the management of chronic pain at least in New Zealand.
- Firstly there continue to be medical practitioners who can’t resist ‘trying something more’ to reduce pain. And at the same time don’t measure whether pain reduction has changed anything except the frequency (or maybe volume) of complaints from the patient. I think some medical practitioners are training patients to be afraid of having fluctuations in pain, and instead foster ongoing dependence, treatment seeking and not just polypharmacology, but also invasive ‘high-tech’ procedures. Some doctors don’t accept that pain may not have a ’cause’ that can be ‘treated’ so the pain can be ‘abolished’. Maybe some of these doctors haven’t accepted that the brain and central nervous system are always involved in the perception and maintenance of pain and disability.
- Secondly I think there are a lot of psychologists who like to do cognitive therapy, really enjoy talking with people, love helping people ‘understand’ themselves – but don’t really like challenging (or encouraging) people to do things differently. Maybe some of these clinical psychologists have not had any undergraduate (or even postgraduate) exposure to pain management, thinking that simply transferring their knowledge about CBT from mental health to chronic pain is enough (well it is enough to get a contract to provide pain management through ACC). Some psychologists see the problem of function as ‘not my problem’, some see it as ‘far too complex’, and some may not even think about it at all. After all, the questionnaires show that the person has made improvements, so they must be ‘better’.
- Thirdly, the focus on outcomes just is not there within our funding agencies or health care management, not even ACC or Ministry of Health – or, dare I say, DHB. (These TLA’s are real, not made up!) Not only this, but information infrastructure doesn’t allow us to describe patterns of referral, outcomes (real world or otherwise!), and what gets measured gets done, but the quality of what gets done is somewhat mysterious. There is a mismatch between what gets paid for, and what might matter in terms of outcomes for patients/clients.
Now don’t EVEN get me started on the strange and unusual mix of skills that occupational therapists, physiotherapists (and other health people I haven’t yet griped about) bring to the mix… Suffice to say, I can and will point the finger at my own profession, my own practice and way of working!
In the end, while we can recognise the shortcomings of things like FCE, indeed ANY functional assessment, and we know that activity regulation (aka ‘pacing’) is not yet an evidence-based approach for pain management, what occupational therapists and physiotherapists really care about is function. It’s also what our professions know more about than any other profession – that blend of knowledge about biophysical, psychological and social that makes up the internationally recognised model of chronic pain. We need the other professions (if they’d only do what WORKS!), but they NEED us too.
Whew! got that off my chest. But wait: there will be more. Looking forward to seeing the comments flying in!