persistent pain

Uncertainty: perennial controversies in pain understanding


As I write this post today, yet again there are new theories being proposed for that most common of experiences: pain. Not only theoretical controversies, but even the definition of pain is being debated – is pain an “aversive” experience? An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury. Some researchers have recently “found” a new nociceptive fibre (though they persist in calling it a “pain fibre” – once again perpetuating the idea that pain is one and the same with nociception).

One of the conversations is whether pain is a sensation, or an emotion, or something else. When I went to University and studied psychology, sensation was defined as “information transmitted by sensory receptors” – in other words, activity in the sensory receptors prior to perception is classified as sensation. Emotions are also defined in psychology, and depending on the theory being followed might be defined as “a complex reaction pattern, involving experiential, behavioral, and physiological elements.” Perception involves recognising and interpreting sensory information, and invokes the idea of awareness as an essential feature. (This is a good place to begin searching for definition – click)

The term aversive indicates “a physiological or emotional response indicating dislike for a stimulus. It is usually accompanied by withdrawal from or avoidance of the objectionable stimulus.” So pain, unlike most sensory experiences also contains an intrinsic element of distaste and avoidance – even people who pursue painful rituals like body suspension will acknowledge that the experience of being pierced is not pleasant but do it to achieve something else, often a feeling of achievement, accomplishment, meeting a challenge. Doesn’t sound too different from people who enjoy running a marathon, or lifting heavy weights.

The new proposed definition also includes the phrase “caused by, or resembling that caused by actual or potential tissue damage” – because we learn to associate the experience we call pain (or whatever word we use in our first language) with what happens when we graze our skin, get pricked by a needle, or knock our shin. For potential tissue damage, think of those staring contests we used to do as kids: who will blink first? Or consider how long we can sit before we’ll move to relieve the numbness-then-ouch on our buttocks! I prefer the term “associate” than “caused by” because we don’t always perceive pain at the time of tissue damage (think about the bruises we find in the morning after a sports game – but we don’t recall exactly how we got them).

So, for what it’s worth, pain isn’t simply a sensation (the experience is always aversive, and invokes an emotion alongside the sensory characteristics) and it’s not simply an emotionit’s a perception, an interpretation of sensory input via nociceptors in the context of current goals (and consequently, attentional focus), social meaning and values, and past experiences (both personal and vicarious). These latter aspects are really important because it’s not uncommon to fail to perceive “ouch” during an important sports game when the attention is elsewhere, and some beautiful experiments have shown that our perception of a potentially painful experience is influenced by what we’re told about the stimulus (Arntz & Claassens, 2004).

The controversies over a definition of pain matter because after the original definition of pain was agreed upon, it was finally possible for researchers, clinicians and commentators to distinguish between the experience and its sensory apparatus. This is important because it enables a focus beyond what goes on in the tissues, to the person’s experience. Prior to defining pain in this way, if a person claimed to have pain but there was no nociceptive activity, he or she was considered lying or mentally unwell. Traces of this attitude continue to this day, sadly.

Focusing on the person’s experience has allowed treatment to shift beyond “issues in the tissues” to help the person deal with what has happened. Even in the absence of current tissue damage and pain, people can continue to be fearful of potential tissue damage and potential pain. Should anyone question this, I usually point out the extraordinary lifestyle changes made by people who have had angina. These people may not be currently experiencing any chest pain at all – but yet protect themselves from the potential of chest pain because “it might happen again.”

A shift away from addressing sensory stimuli towards helping a person who is experiencing pain involves moving away from a biological-only model of disease. We usually call this a biomedical model where what goes on in the body is considered separately from the person who is the subject of “disease”. Of course, this is a straw man argument because biomedical models have been extending to include the person for at least 30 years. Most medical practitioners would want to address the “why has this person fallen and fractured their neck of femur” alongside “fixing the neck of femur fracture with a plate and pin.” But, it troubles me greatly when I hear people say “but what about the bio?” when it comes to incorporating a broad, multifactorial understanding of people experiencing pain into pain rehabilitation. A multifactorial model (call it biopsychosocial if you will) has never negated the biological contributing factors – but has instead placed those factors into relative importance with psychological and social contributions. And psychological and social factors seem to have more to contribute to our experience of pain and resultant disability than, in particular, what happens to a tendon or disc.

And this leads me to the perennial problem of what do we do if pain doesn’t settle, despite our best efforts. This problem is a real and ongoing challenge for both the person experiencing pain, and his or her health. I think it’s a question many health professionals shy away from. Are we afraid we’ve let the person down? Let ourselves down? Failed somehow? What is it like for the person with pain – constantly wondering if this next treatment will do the trick? Or the next? Or whether they’ve failed? Or is it something sinister? There’s no doubt that pain is aversive and it can invade so much of life – but if so much of our experience of pain is related to how we interpret it, what if we were able to re-interpret this experience as less sinister, less distressing?

Health professionals are powerful attitude shapers. Could we use this influence to help people be a little less afraid of pain, and maybe a little more confident that although pain is inherently aversive, humans are infinitely creative and resourceful and can make peace with pain’s presence?

“‘Specialized cutaneous Schwann cells initiate pain sensation”. Abdo H, Calvo-Enrique L, Martinez Lopez J, Song J, Zhang MD, Usoskin D, El Manira A, Adameyko I, Hjerling-Leffler J, Ernfors P.
Science. doi:10.1126/science.aax6452

Arntz A, Claassens L. The meaning of pain influences its experienced intensity. Pain. 2004;109: 20–25. pmid:15082122

Cannabis and cannabinoids for persistent pain?


Over the last 12 months New Zealanders have entered into the debate about cannabis and cannabinoids for medical use. In the coming year we’ll hear even more about cannabis as we consider legalising cannabis for recreational use. There is so much rhetoric around the issue, and so much misinformation I thought it high time (see what I did there?!) to write about where I see the research is at for cannabis and cannabinoids for persistent pain.

For the purposes of this blog, I’m going to use the following definitions: Cannabis = the plant; cannabis-based medication = registered extracts (either synthetic or from the plant) in standardised quantities with quality assurance; cannabinoids = substances found in cannabis that may or may not be synthesised into cannabis-based medication.

I’m going to divide this post into two: one part is about cannabis and cannabis-based medication for persistent pain; and the other is about cannabis for recreational purposes.

Recreational use

Cannabis is really popular in New Zealand. Growing up in Gisborne, one of the prime growing regions because of its long, warm summers, cannabis was common. I’ll put my hand on my heart and say I didn’t try it because I was a bit of a nerd and didn’t even try alcohol until I’d left home at 17!

Ministry of Health estimates that eleven percent of adults aged 15 years and over reported using cannabis in the last 12 months (defined here as cannabis users). Cannabis was used by 15% of men and 8.0% of women. Māori adults and adults living in the most deprived areas were more likely to report using cannabis in the last 12 months. Thirty-four percent of cannabis users reported using cannabis at least weekly in the last 12 months. Male cannabis users were more likely to report using cannabis at least weekly in the last 12 months. The NZ Drug Foundation reports that ” In the 2015/16 year, 80% of the adult population reported drinking alcohol once or more – 31% reported drinking at least twice a week.”

The harms from cannabis are real: for vulnerable people, particularly teens with developing brains, the foetus, and those with other mental health problems are more likely to experience adverse effects including psychosis. This risk increases with the greater THC content. The mix of cannabis plus alcohol is nasty… But I’m more concerned about the harms from prohibition.

Prohibition for alcohol didn’t work. Illicit stills, home brewing, fruit-based alcohol concoctions were all readily available during the prohibition era in New Zealand (see this about Hokonui Moonshine). Why would we think prohibition would be effective for cannabis? In fact, the harms from prohibition are this: limited calm and reasoned discussion about adverse effects of cannabis; disproportionate targeting of Maori for possessing cannabis; the use is underground so there is no quality control of the product; gangs use their control of cannabis to threaten purchasers; the real health and addiction problems of cannabis can’t be addressed because it’s illegal while the funding used by police and the justice system could be redirected towards helping the vulnerable. And there are undoubtedly other harms as well.

For my money, I’m quite comfortable with legalising and then controlling the quality of cannabis for sale in New Zealand. With good safeguards around the age required for purchase and redeploying the money currently spent policing and imprisoning people for cannabis crimes to health services, I think we’d do ourselves a great favour. Not quite so happy about commercialising the product because with competition there’s always an increase in efforts to sell more, but with good controls I think it will be far better than our current situation.

Now. Onto cannabis for pain, and cannabis-based medications for persistent pain.

“Pain-related use”

I’ve been reading a LOT of research exploring cannabis and cannabinoids for persistent pain. To limit the extent just a little, I’ve looked only at cannabis and cannabis-based medications for neuropathic pain. This is for a couple of reasons: cancer pain is different from non-cancer pain, and there are often different considerations for cancer pain. Most of the animal research (rats, mice) uses a neuropathic pain model. Neuropathic pain is one of the more difficult persistent pain problems to treat pharmacologically. There’s more, and better quality, research into cannabis, cannabis-based medications and cannabinoids in neuropathic pain than any other pain mechanism. BUT it’s important NOT to extrapolate from findings in rats and mice, and for neuropathic pain, to all forms of pain in humans. That being said, here’s where things are at.

In neuropathic pain, cannabis-based medications are either a combination of THC + CBD or they’re straight THC. CBD has not been studied on its own for pain. This is important because, according to a study I’ve just been involved in, and from listening to people about their experiences of using cannabis for pain, most people think a CBD-based or CBD-heavy drug is “good for pain”. Recently I reviewed a study of cannabis for fibromyalgia (here) where it was only the plant with THC or THC + CBD that gave people pain reduction. There is some thought that CBD augments the effects of THC, but only in certain proportions – there’s a reasonably small window in which THC + CBD is helpful in pain.

The controlled studies, using reasonable methods (and believe me, there are a LOT of studies using poor methods, and even poorer reporting) show that THC or THC + CBD are the only combinations to provide pain reduction.

The question we should be asking (and always ask before adopting a new treatment) is whether this is more effective than what else is on offer, and whether the adverse effects are fewer.

At this stage I have to say the evidence is pretty skinny. Lots of studies, yes, but not well-conducted or reported, and the change in pain intensity is small. So small that the change in pain scores was a reduction of 4mm on a 1 – 100mm visual analogue scale. And the number needed to treat for one person (to achieve a 30% reduction in pain) were 27 (38.5% response to treatment, 33% response to placebo) (Campbell, Stockings & Nielsen, 2019).

Now this finding conflicts with the many people who report using cannabis (not cannabis-based medications). Again, drawing from the study I have been involved in, many of the participants indicated that they found cannabis helpful – although a good proportion also identified that cannabis didn’t actually take the pain away. And this is interesting. Why is it that people say they use cannabis for pain (and pain is the most common reason given for using “medicinal” cannabis in the US (Kosiba, Maisto & Ditre, 2019)?

Drawing from both the study I’ve been involved, and some hunches, here’s what I think might be happening (more research required):

  • Cannabis promotes a sense of euphoria. Now that doesn’t mean feeling super-high, but it does mean feeling better than before you had it. And if you’re experiencing pain that doesn’t go away, feeling good is such a contrast to what you’re feeling most of the time, I wonder if this explains some of the effect. Particularly as it’s the THC or THC + CBD combo that seems to have greatest effect in research.
  • Cannabis often promotes better sleep, and this is one consistent report from the study I’ve been involved in. Disturbed sleep is, as we know, associated with greater pain the following day, and most people with persistent pain report rotten sleep (Simpson, Scott-Sutherland, Gautam, Sethna & Haack, 2018). Maybe one effect of cannabis use is to help people sleep better – but what are the effects of cannabis on sleep architecture in the long run?
  • Using cannabis involves a ritual. A ritual either of baking, or of preparing to smoke weed. Rituals invoke a meaning response (Blease, Annoni & Hutchinson, 2018; Lindenfors, 2019). They prepare us for what is to follow. In time, we anticipate what happens next. In the case of cannabis, inhaled cannabis takes effect within seconds of inhaling, so it becomes a very potent learned expectation. In baked goods, the effect is far slower – but there’s little doubt that inhaling the scent of freshly baked goodies elicits all sorts of yummy expectations, whether the product is cannabis-laced or not! The meaning response (“placebo effect”) is an incredibly powerful product of our own nervous system – and I have no problems attributing at least part of the reported analgesic effect of cannabis to the meaning and expectations people hold towards its use. Add to the expectation some pharmacological feel-good substances, and it’s potent!
  • Cannabis can be used prn whenever the person feels the need. While some people limit their use of cannabis to an evening toke, from our study some people indicated they used cannabis repeatedly through the day and evening. Because it’s not possible to kill yourself with a dose of cannabis, and because the euphoric effects quickly drop (if they’ve even been a significant part of the experience) cannabis use can be a pick-me-up any time. There are good, and not so good effects from this: prn medication use isn’t thought to be helpful because it can promote increased use over time. That doesn’t appear to be the case for cannabis. Again, prn use of any medication is thought to perhaps address distress rather than pain intensity, so it may mean people are less inclined to use active coping than reach for cannabis. I don’t know, because the research hasn’t been carried out. What does seem clear is that because of its rapid onset and relatively mild side effects as compared with opioids or the usual drugs for neuropathic pain, people are more positive about using cannabis as needed rather than these alternative drugs.
  • Cannabis has fewer strongly sedating effects than many other medications for neuropathic pain. By this I do not mean it has no sedating effects (see above!). But participants in the study I’ve been involved in said they could function, they could participate in things that mattered to them while using cannabis, whereas with opioids or other drugs for neuropathic pain, they couldn’t because they felt groggy, spaced out, or just couldn’t think. I think this is really interesting. Maybe it’s worth being able to think straight is more important to our participants than having better pain reduction. The sedating effects of cannabis effects seem to wear off more quickly, particularly for people who use it a lot.
  • Cannabis can reduce anxiety – but so also can it increase anxiety. People living with persistent pain, particularly weird neuropathic pain, live with the uncertainty of when it will flare up, when the “electric shocks” will start up again, wondering if it will settle down or hang around. This doesn’t engender a state of calm! Some forms of cannabis can reduce anxiety (particularly CBD-heavy forms), but THC-high (see what I did again!!) increase anxiety. It’s a mixed bag especially given that establishing the precise chemical consistency of plant material is pretty difficult – particularly by growers in the illegal market of NZ.

Summary – and a bit of science

Writing this blog I’m sure will bring out a heap of pro-cannabis people who will argue that I’m ignoring the “strong evidence” for cannabis for pain relief. Before anyone does – believe me, I’ve read a heap of papers, and to be perfectly honest, I’m alarmed at the state of the research. Not only are many studies failing to identify the pain mechanisms addressed (neuropathic pain is the most commonly studied, but it’s also common to find studies with mixed cohorts); studies are often short – for a chronic, ongoing problem like persistent pain, we need to have studies carried out over 12 months or more, 8 weeks or less is completely insufficient; the outcome measures used are primarily pain intensity using a unidimensional index like a numeric rating scale – come on guys, pain is NOT a unidimensional problem, and surely we’ve learned from opioid trials that pain intensity isn’t the best outcome measure for a long-term problem? What about participation in life? What about disability reduction? What about sleep? What about reduced use of healthcare? Many of the studies are in rats and mice and last time I checked, I’m not a rat or a mouse, and my physiology is a little different; the analysis of studies is often awful with no mention of dropout rates, no responder analysis, no description of adverse effects and tiny, tiny sample sizes. Worse, the small sample sizes exclude people with comorbid problems like depression, anxiety, insomnia, drug and alcohol use (and yet these are characteristics of many people seeking help for persistent pain). Additionally, most studies don’t indicate whether the people taking part in the study are naive to cannabis – people who use cannabis regularly are less likely to be bothered by adverse effects, so studies aren’t describing what may happen in people who are new to the effects of cannabis.

I could go on, but I think there are enough questions about the state of the research into cannabis for pain for us to be pretty cautious about asking medical practitioners (who may not have the time I’ve dedicated to reading the research) to sign their name to a prescription for a cannabis-based treatment, or cannabis itself. Doctors should think carefully before prescribing because, in health, we expect that medical practitioners know what substance they’re prescribing, the effects of that substance, what it should be used for, what harms might come from it, what interactions it might have with other medications, and that the product available has consistent quality-assured content.

As for understanding why people continue to use cannabis for pain – I’m keen to study this in more detail. Why is there such a disparity between what research shows and what people tell us? What might explain this? I’m absolutely not doubting the experience of people who say that cannabis helps – I’m just curious about how this is coming about, because it doesn’t look like it’s purely from the pharmacological effects of the plant.

References

Blease, C., Annoni, M., & Hutchinson, P. (2018). Editors’ Introduction to Special Section on Meaning Response and the Placebo Effect. Perspectives in biology and medicine, 61(3), 349-352.

Campbell, G, Stockings, E, Nielsen, S. (2019). Understanding the evidence for medical cannabis and cannabis-based medicines for the treatment of chronic non-cancer pain. European Archives of Psychiatry and Clinical Neuroscience, 269. pp 135 – 144. https://doi.org/10.1007/s00406-018-0960-9

Kosiba, J, Maisto, S, Ditre, J. (2019). Patient-reported use of medical cannabis for pain, anxiety, and depression symptoms: Systematic review and meta-analysis. Social Science & Medicine, 233, pp 181-192. https://doi.org.10.1016/j.socscimed.2019.06.005

Lindenfors, P. (2019). Divine Placebo: Health and the Evolution of Religion. Human Ecology, 47(2), 157-163.

Simpson, N. S., Scott-Sutherland, J., Gautam, S., Sethna, N., & Haack, M. (2018). Chronic exposure to insufficient sleep alters processes of pain habituation and sensitization. Pain, 159(1), 33-40.

Self-management: What do we think about it?


Self-management is all about the person living with their chronic health problem, learning how to maximise their wellbeing and limit the impact of their health problem on their life. The words might be well-known – but how self-management is best carried out, by whom, and when is a vexed question.

I stumbled upon a study carried out by Van Wely, Boiten, Verhoef, Eijckelhof, Van Hooft, Van Staa et al (2019) where, using Q-methodology (more about this shortly), they examined the beliefs about self-management of a group of Dutch physiotherapists.

First of all, why is this something to blog about on a blog about pain? My basic reason is that the only time we as health professionals can directly influence what a person does is when they’re in front of us. That might be about 30 – 60 minutes, maybe once a week if we’re lucky. The rest of the time that person is on their own. How closely the person follows what we’ve discussed in clinic depends on a whole bunch of factors, some of which are values (how important is health compared with everything else in that person’s life?), readiness to take action (maybe just thinking about it hasn’t yet moved to planning or doing), support or not from others, how well we’ve explained things (how many of us learned about teaching as part of our training?), confidence (are they worried they’re doing it wrong?) and so on. We’re a little inclined to believe that because we value health over other parts of life, so too does the person. And we’re familiar with what to do – but what we ask people to do can be very foreign and unfamiliar.

Living with persistent pain is a 24/7 7 days a week job. It doesn’t go on holiday, doesn’t switch off because you’re tired, doesn’t shuffle into the background because you have other things to do. I’ve referred to it as the ongoing burden of micro-decisions made every single moment of the day.

This means that knowing what helps, and what doesn’t, being able to decide what to prioritise in this moment on this day in this place, being able to communicate plans and negotiate with others, being “selfish” enough to prioritise what helps with wellbeing over what might feel important in the moment but drains.

So, turning to the study by Van Wely and colleagues, what did they find out?

Q-methodology is an approach to help establish correlations between participants’ beliefs and values by ranking a series of statements, and gradually reducing the list to one by forcing decisions about which statements to omit. Often there is an interview accompanying a Q-methodology sort, and in this case it was used to help participants explain their choices. 37 statements about self-management were sorted by participants into (1) agree (2) disagree or (3) neutral. The “agree” statements were then rank ordered starting from the right “strongly agree”, then moving to the left “strongly disagree” and finally, the neutral statements were sorted. For more information on q-methodology, this site is gold!

Statistical analysis was carried out using a by-person centroid factor analysis with varimax rotation. This process was used to identify the number of data-driven factors, factors representing people who sort the statements in a similar way to one another (ie they share similar beliefs). The qualitative material was then coded to identify topics related to self-management support, and clustered into themes which the authors then labelled.

39 physiotherapists were involved in this study, approximately 50% women, aged between 22 – 64 with an average age of 41 years. Most participants held a Bachelor degree, and the majority worked either in priamry care or nursing home settings.

Results – and what do they mean?

Three dimensions explained how the therapists ranked the statements – the physio’s role perception, the physio’s drive, and collaboration with the patient. The authors therefore coded the four perspectives (from the factor analysis) as (1) externally driven educator (2) internally driven educator (3) client centred coach and (4) client initiated coach.

(1) Externally driven educators thought self-management “ought” to be done to cut down health-care costs, or to reduce the need for clinical input. They thought of themselves as motivators and experts, and didn’t allow much autonomy for the person. Adhering to what is “prescribed” was important – while life goals were considered important, these physio’s thought treatment goals were more important.

(2) Internally driven educators thought self-management is best encouraged by identifying intrinsic motivation in the person, and support self-management by education within consultations. Unlike externally driven educators, they weren’t as motivated by healthcare system issues, and thought that self-management should be supported as an integral part of every session. These participants recognised the person’s autonomy and own expertise to find solutions, and also identified the need for them to obtain additional training to be able to provide support in this way.

(3) Client-centred coaches were influenced by their own internal drive for self-management support and focused on the person’s freedom to choose. Goals of reducing professional care and cost weren’t considered part of the equation, and they aimed to collaborate in a partnership with the people they were seeing. They believed in shared-goal setting, and thought they should be available when needed, but encouraged people to find solutions for their own problems. They particularly thought that healthcare reorganisation was needed to support this approach to healthcare.

(4) Client-initiated coaches also had an internal drive to support self-management but believed the person should ‘take the initiative’ to ask for help, and essentially passed the responsibility for maintaining self-management over to the person, rather than integrating either the environment or physiotherapy input. This group of participants thought distance technology would be useful to support people at a distance.

Overall, the physios in this study thought self-management was not a new concept, nor as something that was difficult or time-consuming. They recognised that self-management promotes the person’s freedom to choose – and that treatment should address the person’s needs so they could self-manage.

The authors were pleased that participants in this study thought of self-management as “business as usual”.

I thought it was interesting that the “educator” perspective was a strong theme. This tends to elevate the clinician above the person seeking help – although these participants did aim for shared decision-making mainly via providing education. I also thought it interesting that factors such as the need for healthcare reform and financial impact of self-management (to reduce cost) were important and I wonder what this study would look like in New Zealand where private practice physiotherapy, dependent as it is on (usually) ACC funding, might be less inclined to support an autonomous self-managing patient.

I think self-management is something all people with persistent pain engage in, whether it’s supported by clinicians or not. We don’t spend all our time “in therapy” which means the rest of our time is all about those decisions. Supporting people to be able to make thoughtful choices about what and how and when to do things that help promote well-being is, I think, something health professionals must do as equal partners. And I think it needs to be made explicit and part of every consultation. That means learning how to work alongside people, listen carefully to their priorities and values, help them develop skills to problem solve and find their own solutions – but most importantly, to have the confidence that people living with pain can make choices themselves.

Van Wely, L., Boiten, J. C., Verhoef, J., Eijckelhof, B. H. W., Van Hooft, S. M., Van Staa, A., & Roelofs, P. D. D. M. (2019). Perspectives of Dutch Physiotherapists on Self-Management Support: A Q-Methodology Study. Physiotherapy Theory and Practice, 35(4), 318-326. doi:10.1080/09593985.2018.1443182

Clinical reasoning & meaning-making (a long post)


Clinical reasoning is a cornerstone of evidence-based healthcare, in fact some would argue it’s the cornerstone of all healthcare. While there are many different processes, the ultimate purpose of clinical reasoning is to ensure the person seeking help has their needs identified then met, and the clinician has a basis upon which to decide which treatment they should offer.

The approach we use in clinical reasoning, including the information we prioritise and search for, and the way we synthesise the information to make sense of it will depend on the model we have to explain our treatment approach. For example, if we’re occupational therapists, we’re looking for information about the occupations the person wants and needs to do (identifying the person’s needs), and we search for information to help explain how and why this person is unable to manage their occupations at this time. Because occupational therapy is concerned with context – social, interpersonal and environmental, as well as looking at pathophysiological processes, we will also review psychosocial-spiritual factors (beliefs, attitudes, desires, interactions, values, etc) and the physical and social environment/s as part of our clinical reasoning.

Meaning making

But… there’s something missing from this picture of how we go about doing clinical reasoning: the very process of enquiring about “daily doing” (aka occupation) is likely to influence the person seeking help. There is a dynamic process involved in making sense of what’s going on between the clinician and the person. Some would call this “intersubjectivity” (Quintner & Cohen, 2016) meaning “a shared perception of reality between embodied agents… meanings expressed through performance and …perceived by others”, some would call it “embodiment” (Arntzen, 2018) meaning bodily aspects of human subjectivity and referring to my phenomenological body (the way I experience my body), and still others wouldn’t recognise it at all! I like to call it “meaning making” or the way that both parties make sense of what goes on in the “meet the therapist moment” as Benedetti (2011) puts it.

Much of the discussion about clinical reasoning refers to the way clinicians blend implicit/tacit knowledge (knowledge that’s so well-learned that it’s hard to state exactly what it is) with explicit/declarative knowledge (knowledge that we can articulate). Each profession has its own implicit body of knowledge that frames the way they approach the clinical problem. I think patients, or people seeking health care, also have implicit knowledge they bring to the clinical setting.

Some of the knowledge brought in from people seeking treatment is the inner sense that “something is wrong with me”. Without the sense that something is wrong, we don’t seek healthcare, and this can explain why problems like bowel cancer can go unnoticed until the disease is in an advanced state – because symptoms are either very subtle, or not present. With low back pain we know that for most people the sense that “something is wrong” is almost immediate, but may not evolve into treatment-seeking until the problem either doesn’t follow the typical path of recovery, or the pain begins to interfere with what’s important in daily life (Ferreira, Machado, Latimer, Maher, Ferreira, & Smeets, 2010).

We acquire the idea of “something is wrong with me” from personal experience (that queasy feeling just before you get seasick), from others around us (you’re looking really pale today, are you OK?), and from broader society (if your pain persists, see your health professional). But, from some of the qualitative studies I’ve been reading, I think we really start to notice and do something about our “something is wrong with me” intuition once we can’t do things that are important to us and help to define our sense of self (Darlow, Brown, Lennox Thompson, Hudson, Grainger, McKinlay & Abbott, 2018).

It’s clear to me that both the person seeking help and the clinician hold tacit knowledge, and that this knowledge/information is likely to influence clinical reasoning. And some of the implicit knowledge in both clinician and patient changes without either party recognising that’s what has happened.

Back to clinical reasoning and meaning making.

Something I noticed when developing my theory of living well with chronic pain was that many people with ongoing pain learn about the effects on daily doing by themselves (Lennox Thompson, Gage & Kirk, 2019). What I mean by this is they establish what they can and can’t do in mini-experiments (experiences) each day. This experimentation and experience is strongly influenced by the person’s interpretation of what the pain means – and the confidence they have to find ways to cope or deal with pain. Because so much of our knowledge about pain is based on acute pain that generally settles down quickly, it’s unsurprising that some interpretations of persistent pain go awry.

Given the impact of persistent pain is firstly on being able to do what’s important in a person’s life, it makes sense to me that our clinical reasoning should incorporate an understanding of what the person needs and wants to do. It also makes sense to me that we need to understand the person’s current perspective: their beliefs, assumptions and experience of what pain has interfered with. This doesn’t mean that the person’s perspective is 100% accurate with respect to what is going on in their body, because as I pointed out above, many of our beliefs about “what is wrong with me” are based on social constructs. Having said that, it doesn’t mean our clinical interpretation is any more “accurate” – it does, however, mean that until our perspectives align, we’re likely to have trouble developing a shared meaning of the problem. As Arntzen points out “there is a tendency in person-centered occupational therapy practice to consider only the patient-articulated experience and not the multiple layers of embodiment and co-construction of meaning within the therapeutic relationship” (Arntzen, 2018).

One form of clinical assessment, perhaps one that’s under-used, is as Arntzen (2018) describes, the ongoing dialogue between a clinician and the person as the person enacts movements or engages in occupations. This kind of meaning making involves physical and cultural contexts (I may visit a cafe with my client to see how she navigates the tables and people, how she stands and then sits while drinking her coffee, and how she moves from this location to her car); it involves conversations with her about what is going through her mind as she encounters these situations; I may change the location of our next session on the basis of interpreting her performance in this context, adapting my voice, my body language to convey my assessment of this performance.

At the same time, the person I’m working with is also making meaning of how she managed in this situation. From my nonverbal and verbal response to what she does, she may infer that I think she’s doing fine, or that I’m worried about her capabilities. You’ll notice that much of this implicit shared meaning making is not verbal – it’s inference, and may well be inaccurate.

I really like Arntzen’s description of the way clinician and person can work together to develop a shared understanding of “the problems” – I’m quoting it whole:

An embodied intersubjective reasoning can be about questioning how the patient senses their changed body during performance and what it means for his or her ability or obstacles to act, learn, and change. This mode of reasoning can help the occupational therapist problematizing the patients’ performance, capabilities, and possibilities as an interrelated process between action failure, lived habitual practice, and ongoing and shared meaning-making.

Arntzen, 2018

I also love this depiction of therapy: Therapy is a context- specific dialogue between two interpretive, embodied agents, in which the outcomes of their relationship are not given in advance (Arntzen, 2018).

How can all clinicians use this perspective?

While Arntzen is an occupational therapy commentator, and I have framed this post through an occupational therapy lens, I think there is much that other movement and doing-oriented clinicians can draw on. The “ambiguous body” is also core to much of physiotherapy: the person’s experience of being within a body with its attendant limitations, and the body through which goals and aims and life is lived. The ambiguity is particularly relevant in pain where “not being myself” dominates the person’s sense of self – because the experience of pain and movement renders familiar actions as different and needing more attention than usual, or failing where it hadn’t before. Doing is disrupted, and therefore “being” the person I know myself to be is also disrupted. The way the person experiences his body can be influenced by an empathic clinician, to help him recognise changes, or become aware of a return to familiarity.

Arntzen (2018) also refers to tools or the things we use during daily doing – the toothbrush, the car, the clothing we wear, the phone we use that now doubles as computer, camera, aide memoir. Although we can think of these things as “things” have you noticed that you talk about “my phone”, “my car” – and the choice of phone or car situates you in your social environment. If you’ve ever picked up another person’s phone by accident, it just doesn’t feel right even before you recognise that it’s not your own! Occupational therapists incorporate “things” as part of enabling occupation, as do physiotherapists who may incorporate walking aids, temporary splints, or use gym equipment as part of therapy. I think it’s worth considering how the person experiences these things – are they integrated into a sense of self? (think of those tatty neoprene wrist splints worn for months, if not years; and also ponder the gym equipment that still seems alien even after completing a six week rehabilitation programme).

Finally, the crucial element of what we attend to during therapy – and the things we focus on and draw the person to notice – is about our own embodied presence. Arntzen says “Through moment-to-moment interaction, the therapist can have an effect on what becomes foreground and what is background for the patient during the act. The therapist may support or hinder the patient’s habitual practice, or may facilitate or hold back the patient’s own capability to explore new strategies, develop compensatory techniques, and find alternative solutions” (Arntzen, 2008). I’ve often described this process when teaching about eliciting automatic thoughts during movements (eg riding a bike or walking over a slippery floor) – if we attend to “purity of movement” or biomechanics or some externalised idea of how someone ought to do something, we’re likely to elicit more of that and it may be unhelpful. If we collaborate with the person and interconnect we’re just as likely to learn from him as he is from us. I like Schell’s (2014) description of this form of clinical reasoning: ecological professional reasoning.

Concluding

To conclude this lengthy post, I think too often clinicians have viewed their role as dominant, and what they say or ask the person to do as the primary therapeutic agent. I also think there’s a reason someone seeks help from a clinician. Relying only on one form of knowledge without integrating other forms (from the other person, using only language, being primary active agent etc) doesn’t seem to represent what actually goes on in therapy.

Many people with persistent pain learn what they can and can’t do on the basis of experiments that (often, at least in our most disabled people) lead to failure and recognising “I can’t do that any more”. Our approach has been to administer corrective exercises, experiences in moving differently, but we may well have forgotten both the contextual nature of doing and the experiential interpretation made by the embodied person. If we want to help people return to “feeling like themselves” maybe we need attend more carefully to the “what it is like” to experience this new experience, and then support the person to experiment in their own context. I’d call this knowledge translation, or perhaps occupational therapy.

Arntzen, C. (2018). An embodied and intersubjective practice of occupational therapy. OTJR Occupation, Participation and Health, 38(3), 173–180. https://doi.org/10.1177/1539449217727470

Benedetti, F., & Amanzio, M. (2011). The placebo response: How words and rituals change the patient’s brain. Patient Education and Counseling, 84(3), 413-419. doi:http://dx.doi.org/10.1016/j.pec.2011.04.034

Brooks, R., & Parkinson, S. (2018). Occupational formulation: A three-part structure. British Journal of Occupational Therapy, 81(3), 177–179. https://doi.org/10.1177/0308022617745015

Darlow, B., Brown, M., Thompson, B., Hudson, B., Grainger, R., McKinlay, E., & Abbott, J. H. (2018). Living with osteoarthritis is a balancing act: an exploration of patients’ beliefs about knee pain. BMC Rheumatology, 2(1), 15.

Ferreira, M. L., Machado, G., Latimer, J., Maher, C., Ferreira, P. H., & Smeets, R. 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

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. doi:10.1080/09638288.2018.1517195

McCambridge, J., Witton, J., & Elbourne, D. R. (2014). Systematic review of the Hawthorne effect: new concepts are needed to study research participation effects. Journal of Clinical Epidemiology, 67(3), 267–277. https://doi.org/10.1016/j.jclinepi.2013.08.015

Quintner, J., & Cohen, M. (2016). The challenge of validating the experience of chronic pain: the importance of intersubjectivity and reframing. In Meanings of Pain (pp. 281-293). Springer, Cham.

Pacing, pacing, pacing…


If there’s one pain management and rehabilitation strategy that keeps me awake at night, it’s pacing. Living with persistent pain, I loathe the idea of pacing because I know everyone “booms and busts” from time to time, and few people like the idea of planning every single aspect of every single day as they come to grips with modifying their daily routines. BUT it’s one of the most popular strategies in textbooks, self-help books, and in treatment so there must be something in it, right?

Vexed definitions

One of the problems with the whole pacing concept is defining what we mean by it. I like Nicole Andrew’s approach: Nicole acknowledges that defining pacing is difficult, so when she talks about her research into pacing, she’s clear about the definition she’s using in that piece of work.

Various definitions abound. As a broad concept, pacing refers to organising daily activities in such a way that a specific end is achieved. The difficulty arises when we begin to determine the end goal of pacing (pain reduction? maintaining consistent activity levels? completing important tasks? avoiding a flare-up? reducing the relationship between pain fluctuations and activity? increasing overall activity levels over time?) and the means used to achieve these ends (time as a guide? activity intensity as a guide? importance and values as a guide? “spoons” of energy as a guide?). You can see how complex this concept is…

Nielson, Jensen, Karsdorp & Vlaeyen (2013) discussed this and identified two treatment goals (they weren’t considering the spontaneous use of pacing, nor the use of pacing outside a treatment context). “Whereas the operant approach seeks to improve function (decrease disability), the energy conservation approach is designed to reduce symptoms (pain, fatigue).”

Fordyce developed the operant conditioning approach, viewing pain behaviours as reinforced by other people – or by avoiding negative consequences such as a pain flare-up. His approach involved establishing a quota – a certain number, or a certain time in which people maintain activity irrespective of pain flucuations. In a clinical setting, this is the approach I mainly use, though there is an art to setting the “minimum” a person does (setting a baseline) and to nudging the activity levels up.

Sternbach, another influential pain management person from around the late 1970’s, followed a similar approach – but instead of simply establishing a baseline, he advised people to anticipate the point at which they would increase their pain and to stop the activity just before then. This is also a popular approach in pain management rehabilitation today – but has the unfortunate effect of reinforcing a pain avoidance (and pain contingent) approach, if not done very carefully.

Occupational therapists have frequently advocated the “5 p’s”. Pacing, positioning, posture, persistence and problem-solving. This approach was based on energy conservation, and while I can’t find the original papers from which this approach was developed, it was introduced to me as part of rheumatology practice, and in conditions where fatigue is a problem such as multiple sclerosis. I can see it being used today as part of the popular “spoons” meme where people are thought to have a fixed number of “spoons” of energy, and need to allocate their energy accordingly. My main criticism of this approach is that it doesn’t allow for people to increase their capabilities over time, either through “training” effects, or habituation.

Now, how about some evidence for any of these approaches?

Well therein lies a problem – there is very little research to support activity pacing despite its popularity. This is why I was so interested when I spotted a pilot study published in Journal of Pain, testing the energy conservation approach to activity managing (aka pacing) against an operant conditioning approach in a group of people with fibromyalgia. This group of people provides us with a useful population to test both approaches because fatigue is thought to be a prominent feature of fibromyalgia, and energy conservation has some degree of face validity for managing fatigue.

The design of the study involved four groups, two immediately treated using either an operant conditioning variant of pacing, or the energy conservation variant, and two groups with delayed treatments, again with the two versions (these groups acted as the control groups for this study). 178 participants were involved, with confirmed diagnoses of fibromyalgia given by occupational therapists using the American College of Rheumatology’s 2010 FMS diagnostic criteria. If the occupational therapist had doubts about the individual’s diagnosis, or the person wasn’t able to provide formal documentation confirming the diagnosis, the study rheumatologist assessed the potential participant for inclusion. This is an important procedure in studies of people living with fibromyalgia, given there is no definitive diagnostic test such as a blood test or imaging result.

The two treatment approaches were documented in treatment manuals to establish consistency, and it’s interesting to note that the approaches were applied across all activities in a day rather than just exercise, as often happens. For full descriptions of each of the ten treatment sessions, the article should be referred to, and the treatment manuals are available at http://research.melanieracine.com/activity management

Cutting to the chase, what did they find?

Well… to quote the authors “Inconsistent with the study’s primary hypothesis, neither treatment was effective in reducing average pain or usual fatigue symptoms. However, analyses of secondary outcome measures suggest the possibility that OL-based activity pacing treatments might be more effective than EC-based treatments in improving patient function.”

I didn’t expect pain reduction, or fatigue to be altered by an activity management approach: the relationship between movement and pain is highly variable, and there are many times we’ll be happy doing something and not experience pain simply because it’s something we enjoy. At the same time, I did hope to see a difference between the two approaches in terms of overall “doing” (function). My expectation was that pain may actually increase as people begin doing more, or alternatively, that people will feel more confident that they can achieve what’s important to them in a day, and that pain intensity becomes less of a guiding factor. The authors provide some explanations: perhaps the study numbers were too low to detect a difference (ie the study was under-powered); and perhaps a brief intervention isn’t intensive enough to help change over so many different aspects of a person’s life. Or perhaps, I want to add, neither approach is terribly great and while they both have intuitive appeal, persistent pain is too complex for any single activity management approach to make much of a difference. Maybe it’s something that needs other strategies to be incorporated such as exercise, mindfulness, medications, and even scheduling pleasant events.

So where does this leave us?

I guess for me, I like to think of activity pacing as one of many different tools in my toolbox. I bring it out when I’m attempting to increase my overall activity level – such as my walking programme, where I’m slowly but gradually increasing my capabilities without giving myself a whole two weeks of DOMs! I otherwise use a more flexible activity management approach: if something is important to me, and I think I can deal with the flare-up, I’ll do it. If it’s not as important to me, or I don’t think I can deal with the flare-up, I’ll probably modify my approach. Pacing, or activity management is only one tool…

Andrews, N. E., Strong, J., & Meredith, P. J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Nielson, W. R., Jensen, M. P., Karsdorp, P. A., & Vlaeyen, J. W. S. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

Racine, M., Jensen, M. P., Harth, M., Morley-Forster, P., & Nielson, W. R. (2019). Operant Learning Versus Energy Conservation Activity Pacing Treatments in a Sample of Patients With Fibromyalgia Syndrome: A Pilot Randomized Controlled Trial. Journal of Pain, 20(4), 420–439. https://doi.org/10.1016/j.jpain.2018.09.013

Why reducing pain intensity doesn’t always mean a better outcome


There have recently been some studies published on meta-analyses of “pain education”. I’ve made my stance clear on what I think of “pain education” particularly as a stand-alone intervention here and here and why I think we need to look beyond pain intensity reduction as The Outcome of Choice. In this brief post I want to look at some of the variables that influence both pain behaviour and pain intensity.

We all know that pain is subjective: this means it can’t be directly shared with anyone, and no-one is able to determine just how sore any other person is (that includes people who believe they can spot faking or malingering. Stop it! You can’t, not for pain). What this also means, though, is that for us as clinicians to understand what it is like for another person to be experiencing pain, we must infer on the basis of what they do (ie behaviours).

Mostly with adults, we infer the severity of pain on the basis of the dreaded visual analogue scale or the numeric rating scale – “what is your pain on a 0 – 10 scale where 0 = no pain at all and 10 = most extreme pain you can imagine.” In people who either don’t speak our language, or who can’t respond with words, we rely on inferences drawn from their “body language” or nonverbal behaviour.

Many pain behaviours begin as useful evolutionary responses to threat: physiological arousal, reflex withdrawal, verbal groans and gasps. These serve to help us withdraw from the stimulus, help us escape the threat (or freeze or fight it), and signals that we need help (and avoid this threat) because we’re social animals. At the same time, behaviours are subject to behavioural reinforcement as well as cognitive biases, memories and so on. An example: If someone goes to the Emergency Department and reports their pain is 3/10, they’re unlikely to receive heavy-duty analgesia. You can bet that if they attend ED on another occasion, they’ll remember this and report their pain to be a little higher. Now often this isn’t a conscious decision, it’s something we learn over time and throughout our lives, so we may be oblivious to how we alter our verbal and nonverbal behaviour as a response to events in the environment and our own interpretations of what’s going on.

Pain is also rarely a static, consistent experience. Pain typically varies over the course of time. It can be episodic and pulsing and rhythmic, or it may come in waves, it might fluctuate unpredictably: in part this variability is a product of the stimulus, but also physiological processes such as habituation, attentional demands can mean we’re more or less “tuned in” to being aware of pain, and our emotional state is also part of the picture.

Finally (or not, depending on my whim!), our response to pain depends on our interpretation of its meaning and significance. When we’re tired and feeling down, and the pain seems mysterious and very threatening because we have things to do and no-one can tell us what the diagnosis is we’re more likely to increase our awareness and our behaviour associated with that experience. Maybe we’ll report it as 9/10 because it seems to intrude on life, the universe and our very existence as we know it. Maybe we’ll be really afraid and don’t think we can cope with it even though we usually do, so we’ll report it as 12/10. Maybe we’re not experiencing pain right now but we think that if we do something wrong we’ll get the pain back (think of angina here), so we just don’t do things “in case”. And maybe we’ve been told not to do things because it might be harmful, so we don’t do those things, our pain is around its usual level but we feel constrained and report it as 7/10 because we’re fed up with it all.

We know that part of the challenge of pain is that it’s incompletely understood (I use the word “it” as a placeholder for the rather more wordy “our experience of pain”). We do have pretty good means of reducing pain, but the problem is that these leave us incapable of doing very much because the most effective approach is simply to lose consciousness. But life doesn’t permit us to do that for long without adverse consequences! And for many people, even the best analgesia is only likely to reduce pain by about 30%, if at all.

When someone has learned to reinterpret their pain as not terribly threatening, still annoying and frustrating and demoralising, but not indicating that the body/self is about to come to serious harm, it’s possible to look well but feel awful inside. In other words, the pain intensity and quality doesn’t change an awful lot, but because it’s no longer associated with existential threat to self, it’s possible to put on makeup, groom well, interact happily, and look “normal”. How do I know this? Well – that’s what I do every day.

So using pain intensity as a guide to how well a person has recovered or adjusted to their pain is not an especially reliable guide as to how much pain is bothering them. The relationship between pain intensity and what we can and cannot do is uncertain and complex. And behaviour change is not easy. Doing things differently involves a whole cascade of changes that need to be implemented, not the least of which is learning how to regulate physiological arousal, reconceptualising the pain experience as something that can be lived with, redirecting attention towards things that matter to us, developing motor control and strength when this has changed – but possibly the most complex and ignored involves responding to, or altering our response to other people’s behaviours.

This means navigating other’s expectations from us (some people are afraid that when a person begins doing things again they’re going to make their pain worse and fail, others are expecting return to “normal” without factoring in that pain IS a significant challenge to deal with), and their behavioural responses to what we do. Many of the people I work with who live with pain talk about losing friendships, not being able to keep up with others, being misunderstood, being ignored or punished with angry reactions because they’re not the same person they were before their encounter with weird prolonged pain. And these are only the responses at an individual and small group level! What about the perverse disincentives to return to usual activities, like losing compensation prematurely, or having to return to a job that is not the job you left and you feel unprepared for or overskilled and unappreciated? Legislation that is written for “normal” recovery from illness or injury but doesn’t include persistent pain. Processes that mean you have to prove disability repeatedly just to retain access to services or income.

So, even if clinicians find that their treatment reduces pain, it may not lead to the outcomes clinicians want to see: a happy, active and engaged person. Sometimes it can lead to ongoing life restrictions (think angina again). Sometimes it can lead to erratic activity patterns. Sometimes those other factors influence how the person goes about life and not in a good way.

Echoing something written repeatedly over the decades in pain research literature, I want to quote from Ballantyne and Sullivan (2015). This article challenges clinicians to rethink pain reduction as the primary outcome measure for persistent pain in the face of increasing opioid use (now reducing but often without subtlety or support) because of the very issues I’ve outlined above. They state the following:

Suffering may be related as much to the meaning of pain as to its intensity. Persistent helplessness and hopelessness may be the root causes of suffering for patients with chronic pain yet be reflected in a report of high pain intensity.

And conclude their article with this:

When pain is chronic, its intensity isn’t a simple measure of something that can be easily fixed. Multiple measures of the complex causes and consequences of pain are needed to elucidate a person’s pain and inform multimodal treatment. But no quantitative summary of these measures will adequately capture the burden or the meaning of chronic pain for a particular patient. For this purpose, nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient’s experiences and offer empathy, encouragement, mentorship, and hope.

Emphasis is entirely mine. And heartfelt.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of chronic pain—the wrong metric? New England Journal of Medicine, 373(22), 2098-2099.

Why do clinicians fear telling people their pain may persist?


There is a big void in our understanding of interactions between clinicians and people who live with persistent pain, and that vacuum is about how people learn that their pain is not going anywhere soon. Recently I searched for qualitative research examining the conversations between clinicians and patients at the moment of diagnosis: that moment when a clinician says “I’m sorry, but you’ve tried all there is to try, and it looks like your pain might not respond”. Or it might be “We’ve found out what your problem is, but we know that right now, there aren’t any very effective treatments”.

Oddly enough – or perhaps not – this is incredibly difficult to find. I wasn’t able to locate any specific studies (though if someone else has found some I’d be very happy to get a list!). The closest I found was a synthesis of qualitative studies by Toye, Seers and Barker (2017) looking at the experiences of healthcare professionals while treating people with persistent pain. In it, the authors identify six themes that seemed apparent after synthesising the included studies:

  • Skepticism in medicine where a person is ill – but diagnosis is difficult. The authors point to the strong culture within medicine in which subjectivity is valued less (they say “shunned”) than objectivity. But of course, pain is always subjective.
  • Clinicians have to “do the work” of reconciling the person they see in front of them and the absence of objective clinical findings – this is difficult when a biomedical model is preferred over a biopsychosocial model. (I could add here that unless that biopsychosocial model is truly integrated as a whole, it could turn into a dichotomous not “bio” then “psychosocial” but that’s another discussion)…
  • Clinicians also have to work in a space where either their clinical knowledge is not relevant, or it’s actively unhelpful, meanwhile trying to help a person who wants and needs certainty and support.
  • Clinicians also have a dual duty: responding to the person who is distressed while also remaining aware that some of what the person wants may not be helpful or good – with some of the concerns being also about the healthcare system, and using investigations that are unnecessary and wasteful.
  • As a result of these multiple demands on clinical balance, clinicians may bear a personal cost in terms of emotional energy, empathy and perhaps as a result find it difficult to want to engage with people for whom they feel the “work” will be hard and unrewarding.
  • Ultimately, clinicians working in this field develop a “craft of pain management” which they believe defies algorithms and categorisations, and instead is an ongoing interplay of call and response.

I can completely understand these challenges. If clinicians “measures of success” are resolution or a problem, or at least effective management of a problem, the difficulty in most instances of persistent neuropathic or nociplastic pain is the limited number of medications, and their relatively poor effectiveness. And other approaches (exercise, coping strategies etc) are equally limited. So – we might need to establish a different measure of success, and that’s hard.

In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people with persistent pain on a social media group to give me their account of how they were given the news about persistent pain. The themes that emerged were:

  • No-one told me my pain would persist.
  • Despite surrounding myself with a broad multidisciplinary team, no-one broached the subject.
  • Pointing to the presence of supposed pathology – “you’ll need surgery”
  • “what we’re doing isn’t helping” – despite best efforts.
  • Being put into a category of people who can’t be helped.
  • No-one showed me how to live with this pain
  • Being told casually as if it were no big deal – this shouldn’t have a big impact on you.
  • I was told there’s no cure, no effective treatment and the idea is to make life tolerable but I will probably never be pain free.
  • The diagnosis of a disease was given – but I wasn’t told it was the reason I hurt.
  • You have chronic pain and there’s not likely to be a cure in your lifetime.

In my interactions with people online, both people with pain and those hoping to treat, I’ve heard a number of opinions: we should never “give up” on pain reduction; we don’t want to “kill hope”; there’s always something we can do …

Here are a few questions:

  • When do we admit we don’t have a 100% success rate for treating persistent pain?
  • Given that people with pain often put their lives on hold until there is a diagnosis and treatment plan (usually aimed at pain reduction and/or cure) – how long does someone need to put their life on hold until we acknowledge that the cost of waiting outweighs the uncertain benefits of pain reduction?
  • Is this a decision we as clinicians should make? If it’s a collaborative decision, do we provide people living with pain an unbiased and neutral view of their options?
  • Fundamentally, do we fear living with pain ourselves, and does this in part fuel our desire to keep treating?
  • What do you think it’s like for a person living with pain to never be told that this is reality? Because people will blame themselves (for not trying hard enough), blame their health professionals (for not looking hard enough), blame the system (for not funding enough) – when actually there is no secret stash of treatments for people who are “good enough” to get them.
  • If someone is told “chances are high this won’t resolve quickly, if at all” does this mean nothing will ever change? Or simply that we’re giving permission to ourselves and the person to find ways to have a meaningful life with pain? What if we conveyed the reality that currently there may not be a way to reduce pain, but this doesn’t mean it will be forever – and in the meantime we can work together to create a life that is fulfilling?

I guess the sad thing for me is that even though we’ve had persistent pain management programmes available in various forms since the 1970’s, with the flush particularly evident in the 1990’s and waning ever since, people are still not given the opportunity to have good support while learning how to live well with pain.

Because until we have at least a 90% success rate with our treatments for persistent pain, I think we need to be humble and admit these approaches are still needed.

Toye, F., Seers, K., & Barker, K. L. (2017). Meta-ethnography to understand healthcare professionals’ experience of treating adults with chronic non-malignant pain. BMJ Open, 7(12), e018411. doi:10.1136/bmjopen-2017-018411

Ways to avoid “othering”


After my last post on “othering” I thought I should write something about what we know reduces the distancing that othering produces. To refresh your memory, othering is what happens when we identify positive characteristics about ourselves and simultaneously identify the absence of these positives in another person. Othering is a common part of any interaction but it seems to become less helpful as views become more polarised.

Lehti, Fjellman-Wiklund, Stalnacke and colleagues (2016) describe “walking down ‘Via Dolorosa'” as the “way of pain and suffering… from primary healthcare to [a] specialty rehabilitation clinic.” This depiction also captured the way gender and sociocultural context influenced that journey: chronic pain is a ‘low status’ illness (especially compared with high status diseases like cancer, heart disease, orthopaedic problems), while those patients with higher education and similarities to treating clinicians were viewed as “easier to interact with”. This study provides an insight into the norms expected as part of “being a proper patient – ready for change”.

Norms are a part of culture, assumptions about what “is done” in a particular context. Just as health professionals learn to “be professionals”, people seeking help for their health are also expected to behave in certain ways. Othering is, as I’ve indicated above, a normal or common part of interactions – some authors suggest we need an “other” in order to for our self to “know itself and define its boundaries” (Krumer-Nevo, 2012). At the same time, once the “other” is identified in less positive terms than “self”, it’s far easier to distance oneself from the other person.

One step towards reducing the distancing between “us” as health professionals and “them” seeking help is to create moments of “belongingness”. What this means is using overt means to help people feel welcome. In New Zealand, this may mean ensuring signs are written in both Maori and English. For people with pain, it may mean explicitly indicating to people with pain that it’s OK to stand up and move around during an initial assessment.

Another way is to raise the idea of the person living with pain as an expert. “Expert?” I hear you say…Yes, expert in “what it is like to be this person living with this pain in this context”. For us to demonstrate our understanding that the person living with pain is the expert on his or her experience, we need to provide safe and welcoming opportunities for the person to tell us what it is like. Narrative medicine, if you like.

Tonini and Chesi (2018) used Charon and Remen’s definition of narrative medicine “a way of dealing with the disease through narration, aimed at understanding the complexity of the patient that will no longer be seen as a set of objective data but as a unique individual with needs” in a study of the stories given by people living with migraine. The stories were of people with a chaotic narrative where migraine was a mystery, full of disorientation and few solutions, moving through to restitution where knowledge and efffective treatment allowed the person to progress. Other narratives were “stable” leading to improvement in understanding and management, and regression, where people gave up and remained disoriented.

How might this help us reduce our sense of “othering”? In one way, learning to hear what people have to say should be fairly simple for health professionals. We’re trained to listen carefully. But what we’re often focusing on is some sort of diagnosis: “what is going on here, what’s going wrong, what’s the pathology?” Hearing another’s narrative is a different process: this involves empathising with, understanding the journey from feeling unwell to seeking help, beginning to acknowledge the similarities between this person and ourselves. How might we respond to illness if we were faced with the same circumstances? the same prior history? the same choices?

Lajos Brons, philosopher (Brons, 2015), argues that charity, or the “reasonableness argument” could help us to deal with othering. Reasonableness is an assumption that the other person has rational, coherent, and true reasons for doing and saying what they do – even if, at first, we may not discern the underlying reasons. By invoking a charitable interpretation on another’s actions, we are in turn asked to question our own preconceptions, our assumptions about the reasons the person did what they did.

Imagine that kind of humanity being brought into our judgements of people who are apparently “lacking motivation”, or “seeking secondary gain”, or “noncompliant”?



Brons, Lajos. (2015). Othering: An analysis. Transcience, 6(1), p. 69 – 90

Krumer-Nevo, M. (2012). Researching against othering. Qualitative inquiry and the politics of advocacy, 7.

Lehti, A., Fjellman-Wiklund, A., Stalnacke, B.-M., Hammarstrom, A., & Wiklund, M. (2017). Walking down ‘Via Dolorosa’ from primary health care to the specialty pain clinic-Patient and professional perceptions of inequity in rehabilitation of chronic pain. Scandinavian Journal of Caring Sciences, 31(1), 45-53.

Tonini, M. C., & Chesi, P. (2018). Narrative medicine, an innovative approach to migraine management. Neurological Sciences, 39(Suppl 1), S137-S138.

Othering


When we look at someone else, we first start by identifying the differences between that person and ourselves. It’s only later that we spend some time identifying the similarities between ourselves and that “other”.

There’s a problem in pain management today. It’s this: too few of “us” are “them” – by which I mean, there are too few people who identify as living with persistent pain working with people who are seeking help for their pain.

“Why is this a problem?” you ask… Well, it’s because it’s far too easy for “us” healthcare providers to forget that persistent pain affects people just like us. Yes, I know the stats: lots of people with persistent pain are multiply disadvantaged by socio-economic status, gender, ethnicity, age, multiple morbidities. But – and this is important – persistent pain doesn’t discriminate, but disability and distress might.

Othering was first brought to attention by Simone de Bouvier. de Bouvier was interested in the way women’s voices were hidden and often compared with men’s voices. “Why”, said men. “Are women not like us?” The answer was evident: women are not men. And in establishing that women are “other”, or “not men”, those dominant voices were able to not only elevate their own voices to prominence, but also minimise and trivialise the words of women.

There are, according to Lajos Brons, two main forms of “othering” – crude, where the assumed differences are stated; and sophisticated, where the assumed differences are stated – and seem reasonable. Let me give an example. It seems reasonable that people seeking help for their pain are needing something they don’t have. And the people they seek help from (healthcare professionals) have that something. Sensible, yes?

“What’s the problem?” you ask. Well, it’s because alongside noticing the difference between the person seeking help and “us” who might have some answers, we also begin to distance ourselves from “them”. And in doing so, we begin to dehumanise or consider that person to be different and somewhat less than us.

I don’t want to accuse readers of stigmatising people who live with pain, so let’s take a moment to unpack what I’m trying to say.

When we talk about someone who is experiencing pain and having trouble with it, we begin by trying to work out what’s going on. In the very best circumstances, we create a “third space” where we can meet one another on an equal footing – both focusing on “what’s going on here”, and neither one assuming a superior position, because while “we” the healthcare professional, might have lots of knowledge about the various factors that could be contributing to this person’s situation, “we” actually know absolutely nothing of this person’s reality, their experience. Meanwhile, the person seeking our help is the expert on what life is like with their pain, their worries, their strengths, their supports, their vulnerabilities. So we meet in the middle, and collaborate, to try to work out how we can develop something new.

Sadly, that space can be muddied by a whole lot of things. We might bring our assumptions about the “other” – that they’re afraid, they need information, they want whatever solution we provide. The person might bring their fear of being misunderstood, their memories of the last time someone “tried” to help, perhaps their idea of what we want to know. We may end up talking past one another.

Let’s see what we can assume about the person in front of us. We might think they just need to know their pain is “an output of the brain” and that “hurt doesn’t equal harm”. We might spend some time educating that person about neurobiology. We might think they need exercise. They need to lose weight. They need do more mindfulness. They need to go back to work. And so our plans for “them” are set in motion. None of these things are bad or wrong – except when we think of the person needing these things before we’ve taken the time to hear what they really want.

What does the person want? Probably like many people, they’d like someone to listen to their perspective. Then they’d like to have some daily practical problems solved: perhaps knowing that they’re not harming themselves. Then maybe some sleep management. And perhaps some time out from people telling them what to do. And maybe some explanations – but only once we’ve taken the time to listen.

“Othering” is one way health professionals maintain a professional distance. By knowing that “we” already do these things, we can feel good about what we offer “them”. But I’d like to ask: how many of us have daily, weekly, monthly goals? How many of us have set them with the SMART acronym? And how many of us have our days timetabled to make sure we do all the things expected of us? What if we have an off day? Is it OK or do we have to explain ourselves? And how many of us also live with persistent pain? I think more of us live with pain than we’re honest about…

I’ve heard “us” talk about “them” and it’s not pretty. “They” need to be more goal-focused, more persistent, more relaxed, more revved up. “They” are ‘non-copers’ anyway. “They” have always needed help for everyday life. “They” have disorganised, chaotic lives.

I wonder what would happen if “we” spent some time checking in on our assumptions about “them”? Would we find ourselves mirrored in the people we try to help? I think we would – and it might help us to remember that we’re guides, coaches, and cheering squads, but we’re no better, no worse, and just as human as “them”. Oh, and some of “us” might even be one of “them” living with pain every day….

Brons, Lajos. (2015). Othering: An analysis. Transcience, 6(1), p. 69 – 90.

de Beauvoir, S. (1949): Le deuxi`eme sexe, Paris: Gallimard, 1976.

Being mindful about mindfulness


I’m generally a supporter of mindfulness practice. It’s been a great discipline for me as I deal with everyday life and everything. I don’t admit to being incredibly disciplined about “making time for meditation” every day – that is, I don’t sit down and do the whole thing at a set time each day – but I do dip in and out of mindfulness throughout my day. While I’m brushing my teeth, slurping on a coffee, driving, sitting in the sun, looking at the leaves on the trees, cuddling my Sheba-dog I’ll bring myself to the present moment and take a couple of minutes to be fully present. Oddly enough I don’t do this nearly as often when I’m cold (like this morning when it’s about 8 degrees in my office!), or when I’m eating parsnip (ewwwww!), or waiting to see a dentist. Or perhaps that’s not odd at all, because I wonder if we have a skewed view on mindfulness and what it’s about.

My reason for writing this post comes from reading Anhever, Haller, Barth, Lauche, Dobos & Cramer (2017) recent review of mindfulness-based stress reduction for treating low back pain. In it, they found “MBSR was associated with short-term improvements in pain intensity (4 RCTs; mean difference [MD], −0.96 point on a numerical rating scale [95% CI, −1.64 to −0.34 point]; standardized mean difference [SMD], −0.48 point [CI, −0.82 to −0.14 point]) and physical functioning (2 RCTs; MD, 2.50 [CI, 0.90 to 4.10 point]; SMD, 0.25 [CI, 0.09 to 0.41 point]) that were not sustained in the long term.” There were only seven RCTs included in the study, with a total of only 864 participants, and many of the studies had no active control groups, so my interpretation is that there are flaws in many of the studies examining MBSR, and that it’s difficult to draw any conclusions, let alone strong conclusions.

Where do we go wrong with mindfulness? The first point about the studies included in Anhever and colleagues paper is that there is a difference between mindfulness in general and mindfulness based stress reduction – and although the difference may be minimal, it’s nevertheless worth understanding. MBSR is a full programme that includes mindfulness as one element (Kabat-Zinn, 1982). Mindfulness is a key component, yes, but the programmes include other elements.  The second point is that perhaps we’re assuming mindfulness to be something that it isn’t –  I suspect, from reading numerous articles in both the popular media and research papers, that mindfulness is being applied as another form of relaxation.

Relaxation training was introduced as part of a behavioural approach to managing stress. In pain management it’s been part of programmes since the 1970’s, particularly using forms of progressive muscle relaxation (See Dawn & Seers, 1998). The intention is to provide an experience that is incompatible with tension, and to develop the capability to down-regulate the body and mind to mitigate the stress response that is so often part of persistent pain.

Relaxation training can take many forms, and breath control is a common component. I use it often for myself, and when working with clients – I’m aiming to show people that although they may not be able to control heart rate or blood pressure, they can control breath and muscle tension. It’s useful especially as part of sleep management.

The thing with relaxation training is it’s entire purpose is to help downregulate an upregulated nervous system. Mindfulness, on the other hand, is not.

What is mindfulness about if it’s not about relaxation? Well, mindfulness has been defined in many different ways, but the one I especially like is by Kabat-Zinn (1990) “a process of bringing a certain quality of attention to moment-by-moment experience”.  This definition can be further unpacked by examining its components: “Mindfulness begins by bringing awareness to current experience—observing and attending to the changing field of thoughts, feelings, and sensations from moment to moment—by regulating the focus of attention.” (italics are mine) –  this quote is from Bishop, Lau, Shapiro and colleagues (2004) and is from a paper looking at defining mindfulness in an operational way (so we can be aware of what it means in practice, or as we teach others). These authors go on to say that this process leads to a feeling of being very alert to what is occurring in the here and now. I like to remind people that it’s about being here rather than remembering or anticipating what might.

So at least one part of mindfulness is learning how to attend to what YOU want to attend to, rather than being dragged back to memories, or forward to predictions, or to experiences or moments that you don’t want to notice at that moment.  The definition also points to noticing and experiencing what is happening, rather than thoughts or ruminations about what you’re experiencing. For people living with persistent pain, I think this is an invaluable tool for dealing with the interruptive effects of pain on attention.

A second aspect of mindfulness is an attitude – one of curiosity. When being mindful, you’re not trying to produce any particular state, instead you’re being curious about what you are experiencing, whether it’s something you’d ordinarily want to experience – or not. This approach to experience is really similar to what we’re aiming for in persistent pain management – acknowledging and being willing to experience what is, rather than attempting to avoid that experience, or quickly change it to something more palatable.

Now this aspect of mindfulness is often brought to bear on new and pleasant experiences – sometimes people are asked to mindfully eat a raisin, or mindfully examine a ballpoint pen (one of my favourites). But it’s also just as valid to bring this attitude to bear on less than pleasant experiences like my cold fingers and legs (it’s cold in my office this morning). Or to pain and where it is – and where it isn’t.

So I wonder if part of our approach to using mindfulness in pain management is incorrect. If we’re intending people to come away from mindfulness feeling relaxed and calm, perhaps we’re doing it wrong. If we think people should feel better after mindfulness, again, perhaps we’re doing it wrong. Sometimes, yes, these are the effects we’ll have. Other times, not so much. What we will always develop, over time, however, is better ability to focus attention where we want it to go, and more openness to being present to what is rather than struggling against it. And I think those are incredibly valuable tools in life, not just persistent pain management. And perhaps, just perhaps, if we began viewing our use of mindfulness in these ways, the outcomes from RCTs of mindfulness might show more of what it can do.

 

Anheyer, D., Haller, H., Barth, J., Lauche, R., Dobos, G., & Cramer, H. (2017). Mindfulness-based stress reduction for treating low back pain: A systematic review and meta-analysis. Annals of Internal Medicine, 1-9. doi:10.7326/M16-1997

Dawn, Carroll, and Kate Seers. “Relaxation for the relief of chronic pain: a systematic review.” Journal of advanced nursing 27.3 (1998): 476-487.

Kabat-Zinn, J. (1990). Full catastrophe living: Using the wisdom of your mind to face stress, pain and illness. New York:Dell.

Kabat-Zinn, J. (1982). An outpatient program in behavioral medicine for chronic pain patients based on the practice of mindfulness meditation: Theoretical considerations and preliminary results. General hospital psychiatry, 4(1), 33-47. doi:http://dx.doi.org/10.1016/0163-8343(82)90026-3