Research journals are full of really interesting studies, but some of the studies I’ve been reading lately seem to lack something. While they’re interesting, they don’t seem to approach some of the gritty questions clinicians need answers to. There are enormous gaps in our understanding of processes of healthcare delivery.
I like to get practical when I want to ponder things. I’ll weed the garden, prune the roses, take some photographs, and recently I’ve even taken to getting out in the garage to carve and sand wood, rip pallets apart – and while I do, I let my mind wander over things that puzzle me. I don’t have answers.
So where has my mind been wandering recently?
One question I have is why there is so little information on the long-term relationship between primary care clinicians and people with chronic pain.
There’s a little on how people get the label/diagnosis of chronic pain, like this paper from Allegretti, Borkan, Reis & Griffiths (2010), where interviews between patients and their doctors were analysed, finding that many times doctors and patients talk past one another, and that doctors may hold a more biopsychosocial model than their patients. Another paper (Dow, Roche & Ziebland, 2012) points out the frustration that patients with chronic pain often express, and their keen desire to have their pain acknowledged, recognised and validated. There’s even a paper exploring patient’s experiences when attending a pain management specialist service (Harding, Parsons, Rahman & Underwood, 2005), but the real passionate cry was for those wanting medical practitioners to give a consistent message that also validated their experience. But these studies look only at short-term relationships, rather than what it’s like to have a long-term relationship with a provider.
There’s also information available on how doctors break bad news to their patients – diagnoses like cancer, or other life-limiting illness. But as Karen Schaepe (2011) says, mostly these diagnostic discussions are presented as a single event where the person is “given the bad news” – but for most people, getting to a definitive diagnosis is a process involving investigations, telling and re-telling the story, experiencing all the things that make up our health service delivery before “that day” when they finally hear about what is going on. And these prior experiences are embedded in the way the diagnosis is made and then experienced.
So I’m interested in how medical practitioners, particularly those working in primary care, respond to the ongoing needs of those with chronic pain.
I’m also curious about how medical practitioners tell people that they have chronic pain, or a chronic health condition that is painful.
This area is relatively unexplored. It seems particularly important given recent recommendations for diagnosing fibromyalgia. Rather than intensive investigations, the 2012 Canadian Guidelines for Diagnosing and Managing Fibromyalgia (here), recommends primary care clinicians make the diagnosis after firstly excluding the nasties, then a clinical evaluation which includes a history of current complaints, attention to past health status and a physical examination, without any confirmatory diagnostic test. The Fibromyalgia Impact Questionnaire is suggested as a useful tool in this endeavour.
But, as people with fibromyalgia know, it often takes a long time before this happens. Why? Because fibromyalgia, like many other chronic pain problems, can present insidiously, symptoms may differ depending on the individual, people can be passed from specialist to specialist, all looking at their own special body system while failing to appreciate the whole presentation.
Doctors do what doctors are used to doing, much like every health professional there is! Typically, a GP with limited time within a consultation, is processing all the various presenting features while simultaneously sifting through the possible diagnoses – and tending towards a conservative mindset, probably because of medico-legal concerns, look for ways to refer the person on for investigations or management from someone who can give a definitive answer.
While GP’s are there to work with the whole person-in-context, and they do (usually) see a person over years, they depend many times on other people to come up with a diagnosis and management plan. Then they will support that plan’s implementation – but perhaps only if it fits within a biomedical model. It’s rather more difficult for a GP to spend the time needed to understand how a person lives their life and could make changes.
So, when a person with chronic pain presents with a flare-up, which is common and part of having chronic pain, and if the GP hasn’t connected the dots and realised that this pain exacerbation is not a new problem, the person can be referred yet again to another specialist for another opinion and another management plan.
I’m curious as to why medical practitioners struggle to tell people that their pain is likely to remain, and that a pharmaceutical or procedural or even surgical option is not available. I can recognise that perhaps it’s because their model of pain is not well-developed. That it could be a way to manage a waiting room full to bursting with coughs and strains and osteoarthritic knees. I wonder if it’s a way to manage their own empathic response to another human in distress – by referring on, rather than giving the bad news and coming alongside the person to support finding management options. While there are many people who argue that it’s a calculated way to keep patients dependent on returning for treatment, I’m not so sure this happens as often as the cynics might think. I wonder if it’s another of those cognitive biases we all have – the tendency to look for confirmatory data rather than looking for information that disconfirms our suspicions.
For all the progress made in reconceptualising pain as a biopsychosocial emergent experience, I think helping medical practitioners shift from a “fix it” model to an interactive one, one where it’s OK to come alongside and sit with a person without wanting to DO something to take it all away, has a long way to go. Maybe it’s a woman thing – I often don’t want someone to fix it, to give me a solution, but I want someone to say “That’s really hard, that’s such a lot to deal with, no wonder you’re feeling overwhelmed”. I’m just not sure how we work our way towards this, particularly in light of a comment from a doctor saying “there’s too much attention paid to pain, I want to study medicine”.
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
Dow, Clare M, Roche, Patricia A, & Ziebland, Sue. (2012). Talk of frustration in the narratives of people with chronic pain. Chronic Illness, 8(3), 176-191. doi: 10.1177/1742395312443692
Harding, G., Parsons, S., Rahman, A., & Underwood, M. (2005). “It struck me that they didn’t understand pain”: the specialist pain clinic experience of patients with chronic musculoskeletal pain. Arthritis & Rheumatism: Arthritis Care & Research, 53(5), 691-696.
Schaepe, Karen Sue. (2011). Bad news and first impressions: Patient and family caregiver accounts of learning the cancer diagnosis. Social Science & Medicine, 73(6), 912-921. doi: http://dx.doi.org/10.1016/j.socscimed.2011.06.038