It can take years for someone to be referred to a pain management service. In fact, in a study of patients accepted into the three week pain management programme at Burwood Pain Management Centre, the average duration of pain was 4 years, give or take some months. No wonder then, that when people in a study by Allcock, Elkan and Williams (2007) were asked what they felt when they were referred to pain management, they said things like “…they’ve given up on us. Because anything that would have been cured, spinally or orthopaedically, has gone by the wayside.”
What’s so important about expectations before treatment? Well, expectations make an enormous difference to how satisfied people are with treatment, and the outcomes they achieve (Main, Foster & Buchbinder, 2010); Myers, Phillips, Davis, Cherkin, et al., 2007). Mismatches between what the person being referred expects, and what the clinician can (or wants to) provide needs to be carefully managed so as not to end in a frustrated consultation, or a patient who feels unheard, misunderstood or fobbed off.
Last week, a person who had just finished our three week pain management programme said that even though we had been really clear that the programme wouldn’t change his pain, secretly he and the other participants had hoped that ‘this might be the one that would take the pain away.’ This isn’t an uncommon thing for us to hear. In fact, although we haven’t studied it, I’d hazard a guess that for much of the first week of the programme, participants are struggling with the idea that we’re probably not going to fix their pain – and worse, their pain might actually become more intense as we help them start doing things again.
What might make this a process that moves along, hopefully, to some resolution or acceptance, is that we’re working with the participants in a group setting, with an interdisciplinary team approach, and consistently for three weeks. They’re hearing the same message, and they’re hearing it from many different people, and it’s for long enough that they can move through some of those phases of ‘readiness to change’ of Prochaska and DiClemente’s.
What else do people expect when they’re referred for pain management?
Allcock, Elkan and Williams (2007) point out that most people in their study expected the pain management centre to be based on a medical model of pain. They concluded that “what [patients] have learned to expect from professionals treating them prior to being referred has not prepared them for the approach to care of staff at specialist pain clinics.” That’s probably pretty accurate. And that belief is probably mirrored by their referrers!
This study also found that many people didn’t feel they had been heard, or taken seriously prior to being referred. Participants in their study “needed to feel legitimated in the sick role, and part of the reason for wanting to know the cause of the pain was a desire to seek legitimacy in the eyes of others.” They made an interesting observation in that participants ranked the statement “I would like to have a better understanding of my pain” fifth on the list of 10 statements, and in the focus group discussion, identified having a diagnostic label as something different from having a better understanding. Allcock, Elkan and Williams suggest that “It was not so much personal understanding of their pain that they needed to legitimise it, as a diagnostic label.”
I found it interesting that, both in this study, and in a review I’ve made of the goals identified by people before they attend their first assessment, doing things again is important – provided that the pain is reduced or removed. There is an expectation that life may only be lived well without having pain. I don’t think this belief is limited to the people being referred to our service – in fact, I’d go so far as to say that it’s a belief that many treatment providers also hold: that returning to the things we love to do can only be done while pain free. This attitude may well drive much of the somewhat futile search for the treatment that will abolish pain.
The problem is that for so many of the people I see, removing or reducing pain intensity is quite limited. Medications not only have unpleasant side effects, they’re also not terribly effective. Even with medications on board, many people find they continue to experience quite an unpleasant level of pain. This is in part because pain intensity is something we can’t directly measure. The level of pain intensity has to be measured through what the person says – and this is a pain behavior. Any report of pain intensity is also filtered through what the person believes is occurring, the meaning of the pain to them and the person’s coping resources.
If pain can’t be removed, am I suggesting that people stoically “soldier on”? Well, not quite. Soldiering on suggests gritting the teeth and pushing through the pain until the job is done. I guess I’m advocating a more flexible approach – recalibrating, perhaps, some of the expectations about what must be done (note the word ‘must’ – changing it to ‘could’ might help); choosing when and how to carry out important activities; maintaining a balance in daily living; having moments of daily pleasure (or taking pleasure in moments every day!); establishing challenges that keep body and mind engaged; taking time to be close to, and trust another person (at least one!).
These are the things that make life worth living.
How do we handle the mismatch between what a person (and the person who referred them) expects from coming to a pain management centre, and what pain management can achieve?
While that’s a topic for another whole post, I think we can start with taking the time to do some of the things that people do expect: listen to their concerns, and I mean really listen. We can take them seriously. We can let them know that their pain is, itself, a disorder – not an indication of something else that needs to be, or can be, fixed. To let people know that chronic pain, in many cases, is a nervous system disorder provides them with a name for what’s wrong, enables them to realize that it’s not their ‘lack of coping’ or a personal weakness, and may allow them to start to accept that it’s not necessary to look for ‘the cause’.
Then maybe we can allow people the time to work through what this means to them – just as we would do if we were telling someone they had another long-term disorder (like diabetes). Being there to listen is maybe the first and most important treatment we can give.
Then we need to instill hope – not that the pain will go, but that the problems it causes can be mitigated, and that it’s possible to live well despite having chronic pain. Of course, first that means that we as treatment providers can believe that it’s possible to live well – and that is the topic of another post!
Allcock N, Elkan R, & Williams J (2007). Patients referred to a pain management clinic: beliefs, expectations and priorities. Journal of advanced nursing, 60 (3), 248-56 PMID: 17908123
Main, C., Foster, N., & Buchbinder, R. (2010). How important are back pain beliefs and expectations for satisfactory recovery from back pain? Best Practice & Research Clinical Rheumatology, 24 (2), 205-217 DOI: 10.1016/j.berh.2009.12.012
Myers, S., Phillips, R., Davis, R., Cherkin, D., Legedza, A., Kaptchuk, T., Hrbek, A., Buring, J., Post, D., Connelly, M., & Eisenberg, D. (2007). Patient Expectations as Predictors of Outcome In Patients with Acute Low Back Pain Journal of General Internal Medicine, 23 (2), 148-153 DOI: 10.1007/s11606-007-0460-5