This weekend I was incredibly fortunate to speak at Le Pub Scientifique (the next one is the super intelligent Tasha Stanton!) about one part of our pain conversation that’s absent: how do we have a conversation about when pain persists and doesn’t respond to any treatments?
I still don’t have any research to show how we might broach this topic in a way that respects the person with pain, acknowledges just how poorly our treatments do, and provides a framework for us to collaborate. It’s like this big bogey sitting in our clinics that we pretend isn’t there.
Why do we need to have this conversation?
Well, one reason is that our treatments are pretty poor and by ignoring this reality we’re sitting there with our hands over our ears going “lalalalala” as if by NOT talking about it, it doesn’t happen.
Another is that people living with pain are put through the most awful process of being offered something (hope!), waiting to get that something (waiting, waiting, waiting…life on hold…), getting it (ooh! exciting!), waiting for it to work (waiting, waiting, waiting…life on hold…), then finding it doesn’t help (despair!). Rinse and repeat. The time spent waiting alone is such an incredible waste.
As a result of us not being brave enough to talk about it, people with pain are often thought of as The Problem. They get blamed for not responding. Blamed by family, friends, other health professionals and funding agencies, insurers and case managers, and worst of all: their own minds.
In 2007 I hit my head and sustained a concussion. For 18 months I wasn’t working full time because I’d need to come home and sleep for at least an hour. Even though I knew that my symptoms were real, and that it can take time to recover from concussion, I spent hours worrying that I was “exaggerating”, “taking things too hard”, “not working hard enough”, “not motivated enough.” Believe me, these thoughts do not help anyone, and they delayed my recovery by pushing me towards a depressive episode.
Imagine if you’re a person with pain that doesn’t respond and instead of being given consistent messages about it as I was with my concussion, you’re being told “Treatment X might be a good option”, or “Have you tried Y?” or “Maybe another investigation might help us sort it out?”
How might that erode your sense of self, your confidence in your own experience?
Now I’m not suggesting we say to people “Guess what, your pain is going to go on forever” – that would be horrible, uncaring and unfeeling.
This isn’t the same as pretending that pain isn’t there, gritting teeth and “just getting on with it”. This isn’t about being resigned to a life of suffering.
What I am suggesting is that we help people to become less afraid of their pain, and to begin to start adding life into their life. That by taking pain into account we can begin to build patterns of activity that move us towards what we value – and I doubt that many of us value waiting for the next healthcare appointment. It also doesn’t mean that people can’t at the same time seek pain reduction approaches – I’ve certainly tried a bunch over the years, sadly none of them have changed my pain one iota.
When a person seeks help for their pain, underlying that request is typically something much more pragmatic. It’s about how much pain is interfering with important things the person wants to be able to do. It’s also about what the pain might signify – is it cancer? does it mean I need to change my job? does it mean I’m succumbing to old age or the legacy of being reckless as a young person? Clinicians often forget to ask “if pain was less of a problem for you, what would you be doing?” Clinicians also forget to ask what the person’s main concern is about their pain.
Addressing these concerns will, I think, help us move the conversation away from which set of exercises is better, which gadget might be new and groovy, which dominant voice should be listened to, and whether someone is “right” or “wrong” about an approach to helping people.
So perhaps, as we begin to recognise that our treatments are not very effective (despite the occasional win! Just like the gambler’s occasional win), we can work towards helping people with pain move towards what matters in their lives – with pain as a companion in the back seat, rather than taking over the steering wheel. And perhaps, somewhere along the way, there will be a place to stop to offload this passenger, but knowing that we’ll always carry the memories and thoughts of having had it as part of our lives. Pain has taught me so much! I am stronger than I think, I am good at finding wiggle room, and I am more compassionate towards others who are newer to the journey.
Trust – something that needs to be earned, or something that is present at first… and then erodes? Or perhaps, it’s a snap judgement we make on the fly – and judge everything else about a person on that basis?
Firstly, why even discuss trustworthiness in pain rehabilitation? Well, the answer is quite clear: I don’t know how many times I’ve been asked if I can tell whether someone is faking their pain. I’ve read numerous articles on functional capacity testing – and its poor predictive validity (or completely absent investigation of such properties). I’ve had case managers tell me they have a method for testing whether someone is faking or malingering… so trustworthiness is something those in the insurance industry seem to want to test. The same kinds of questions are made by employers: how can I tell whether this person is really that bad?
When we don’t believe someone, or we think they’re exaggerating, our level of empathy for that person drops, and our tendency to question their honesty increases (Ashton-James & Nicholas, 2016; Schafer, Prkachin, Kaseweter & Williams, 2016). As a result, people who don’t fit our preconceived ideas of who should or shouldn’t deserve empathy are stigmatised (De Ruddere & Craig, 2016; Stensland & Sanders, 2018). Stigma means people may not receive adequate analegsia (Wilbers, 2015), they may present as stoic and prefer not to reveal how they are feeling (Cagle & Bunting, 2017), and this in turn may lead to further lack of acceptance of that person’s own experience.
So, how is trustworthiness formed? Swenson, Weinstein, Junghaenel and Richeimer (2019) carried out an online study of pain narratives, ie depictions of pain from the perspectives of people seeking treatment. They had 727 participants in this study, 86% (n=626) individuals with chronic pain, and 14% (n=101) having a ‘medical’ background (we don’t know whether medical = health-training). The narratives were based on actual narratives from people living with pain who had responded to the Institute of Medicine (US) call for descriptions related to obtaining care for pain. They identified three narrative characteristics: apparent pain severity, apparent frustration with care, and apparent wish for more or better pain medication. They hypothesised that those describing high levels of pain, frustration with care or a wish for more or better pain medication would be associated with lower ratings of trustworthiness, while people living with pain would give higher ratings of trustworthiness compared with medical professionals.
Participants were asked to rate each vignette on the following characteristics: depressed mood, histrionicity, stoicism, appreciativeness, hostility, and likability. Participants were also asked to assess trustworthiness using the Physician Trust in the Patient Scale (Moskowitz, Thom, Guzman, Penko, Miaskowski & Kushel, 2011).
The results? “Narratives that were rated as depressed, hostile, or histrionic were rated as significantly less trustworthy by study participants (rs=−0.25, −0.44, and−0.43, Ps < .001, respectively). In contrast, pain narratives that were rated as appreciative, stoic, or likable showed a significant and positive relationship with ratings of trustworthiness (rs=0.48, 0.36, and 0.58, Ps < .001, respectively). The observed relationships between personality and psychological characteristics and trustworthiness were similar between patient peers and clinicians.” In other words, the more distressed the narrative the less trustworthy they were rated. So much for compassion for people who are so very often not able to get answers for their pain!
“Pain narratives that expressed a low or moderate level of pain severity received significantly higher trust ratings compared to those narratives that expressed a high pain severity level (t (1,585.15)=9.97, P < .001). Similarly, pain narratives that did not express frustration with pain care received significantly higher trust ratings compared to those narratives that expressed frustration with pain care (t(1,2894.02)=2.59, P=.009).” So, grateful patients are trustworthy, as are people rating their pain as low or moderate. Finally, “when no frustration with pain care was expressed in the narrative, patient peers and clinicians gave similar ratings of trustworthiness, whereas clinicians gave lower trustworthiness ratings than patient peers when frustration with pain care was expressed in the narrative (F(1,2857.31)=7.16, P=.008).” Clinicians clearly think patients should be grateful and satisfied with their care.
Now, I can hear clinicians reading this saying “Oh but not me!” “I would never…” – yet implicit biases exist in healthcare (FitzGerald & Hurst, 2017). Implicit biases are those we have without being aware of them (Holroyd, Scaife & Stafford, 2017). This makes it really difficult to decide whether we ought to take them into account and attempt to correct them, or whether it is just something to put up with. Philosophers Holroyd, Scaife and Stafford tackle this in their paper Responsibility for implicit bias. They break the question of responsibility down to three: Does the attitude reflect badly (or well) on the agent [person], is there a fault (or credit) that can be attributed? Should the agent [person] be regarded as blameworthy for the fault she has or has demonstrated, should she bear some cost or burden (in the form of sanction or blame) for this? And finally, What forward-looking obligations do individuals have for dealing with the fault or problematic behaviour?
Arguments for and against the first question suggest that because the person isn’t aware of their bias, he or she can’t really be held to account for what they do as a result of this. However, once that bias is drawn to the person’s attention, while he or she might still not be able to alter their tendency towards being biased, there is a responsibility to recognise the unfair situation that has arisen, and do something to correct it. Now, Holroyd, Scaife and Stafford’s paper is complex, lengthy and philosophical (tautology perhaps?!), and I’ve cut to the chase – but here’s the thing: we are aware that the way we perceive a person is judged within the first few seconds of meeting them. We’re also aware that we like people who are more like us than different from us. We think people should be grateful for our help, and that they should present as calm and pleasant when they seek it.
YET – many people who live with persistent pain have spent years trying to find appropriate help for their problem. They’re often frustrated, depressed, angry perhaps, and distressed. If we recognise that the people presenting in this way are often stigmatised and judged by others as less trustworthy, I think we ought to (because we know about it) take special steps to counter our tendency to be biased. Some practical things we could do:
Listen for commonalities between the person and ourselves
Recall people who are exceptions – perhaps those who present as distressed and who pull through and develop confidence in their ability to manage
Listen for the unique features of this person’s narrative. Break the stereotype and look for details that make this person special.
Perhaps take the time to ask yourself: what would I be like if I had lived through this person’s life?
Spend some time with people who are experiencing persistent pain. Listen to their stories. Hear their gripes.
Take your time – hurried interactions tend to elicit greater implicit biases.
As we’re emphasising right now in New Zealand, as a result of the terror attack on 15th March 2019, where 50 people died and many were seriously injury, we are one.
Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of social work in end-of-life & palliative care, 13(1), 27-43.
De Ruddere, L., & Craig, K. D. (2016). Understanding stigma and chronic pain: a-state-of-the-art review. Pain, 157(8), 1607-1610.
FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: a systematic review. BMC Medical Ethics, 18(1), 19. doi:10.1186/s12910-017-0179-8
Holroyd, J., Scaife, R., & Stafford, T. (2017). Responsibility for implicit bias. Philosophy Compass, 12(3), e12410. doi:10.1111/phc3.12410
Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Relieving Pain in America, A Blueprint for Transforming Prevention, Care, Education, and Research, Washington (DC): National Academies Press (US), 2011.
D. Moskowitz, D.H. Thom, D. Guzman, J. Penko, C. Miaskowski, M. Kushel, Is primary care providers’ trust in socially marginalized patients affected by race, J. Gen. Intern. Med. 26 (8) (2011 Mar 11) 846–851.]
Schafer, G., Prkachin, K. M., Kaseweter, K. A., & Williams, A. C. d. C. (2016). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625.
Stensland, M. L., & Sanders, S. (2018). Not so golden after all: The complexities of chronic low back pain in older adulthood. The Gerontologist, 58(5), 923-931.
Swenson, A. R., Weinstein, F. M., Junghaenel, D. U., & Richeimer, S. H. (2019). Personality and treatment-related correlates of trustworthiness: A web-survey with chronic pain narratives. Journal of Psychosomatic Research, 119, 14-19. doi:https://doi.org/10.1016/j.jpsychores.2019.01.017
Wilbers, L. E. (2015). She has a pain problem, not a pill problem: Chronic pain management, stigma, and the family—An autoethnography. Humanity & Society, 39(1), 86-111.
I wrote the following response to a discussion held recently on a Facebook group Exploring Pain Science – about the term “catastrophising”. It’s a term that elicits great anger and frustration from people living with persistent pain, and I see the term used poorly by clinicians as a judgement about another’s experience. There’s certainly plenty of research showing relationships between high levels of “thinking the worst” about pain, and poorer outcomes – but HOW we as clinicians respond to someone in distress may be more of a problem than the act of a person describing their fears and worries about the future. This is what I wrote:
I’ve been pondering – I think I see people as doing the absolute best they can to make the best decisions they can based on what they know at the time. And “knowing” means all the messy uncertainty, lack of logic, emotion and coercion from others! So whatever a person is doing to manage is the best they can do. All I can do is offer some options that I’ve seen other people use, maybe provide some more information, maybe even more accurate information, support people to be guided by what they see as important (usually values), and be there for them as they make their own minds up about what to do next. I’m a cheerleader, encyclopaedia, visualiser (lay out the options in a way that makes sense), perhaps a guide but only in so far as helping people notice things they hadn’t before.
To me, if someone is thinking the worst, it could be that they don’t have all the information about their resilience that they need, it might be misinformation about what’s happening in their body, it could be conclusions that over-estimate the threat and under-estimate resilience. It might also be difficulty pulling the mind away from sticky thoughts that stop clear thinking, or as one researcher called it “misdirected problem solving” – a way for the mind to remind the person that there’s an unresolved situation. It might also be feelings of helplessness, feeling like there is no point in trying anything new because nothing works anyway, a sense of not having enough energy to keep trying…
Those aren’t necessarily inaccurate thoughts, but they’re certainly not helpful thoughts, especially at 3.00am! So temporarily at least it seems helpful to bear witness to that person’s distress, to make room to be present, not to judge or dismiss but to allow those worst fears to be recognised. Sometimes bringing the worst fears out into the light shows that they can be managed better than expected, sometimes they fade into nothing, and sometimes they allow someone else to be there and support when the person’s run out of puff.
While I can understand how the language of uninvolved clinicians hurts because so often they fail to acknowledge the real distress of the person, I can still recognise that many of the contents of thoughts and beliefs won’t happen, – those scenarios are there wanting recognition, but they may not happen. If they do there will be things to do then – but mostly, when I catastrophise, I use it as energy to recognise how lacking I feel. And that’s not a nice place to be, but it’s simultaneously true (I lack) and untrue (others have what I need).
There’s a process I use for myself called creative catastrophising. I write down my worst fears, get them out on paper, make them visible. Sometimes that’s all I need to do. Other times I begin planning “what if X disaster happened, what would I do” – and when I’m in the right frame of mind, I can figure out a way to get by. I can’t tell anyone else to do that – but it’s a strategy that’s stood me in good stead as I’ve gone through the ups and downs of my life. It’s one way I cope.
Clinicians, if you can bear witness to another’s distress, without wanting to change, fix, judge or DO anything apart from being fully present, you’ll be doing the very best thing you can. The time for doing something “to help” is just around the corner – whatever you do, do NOT tell the person “you’re catastrophising” because this immediately means you’ve moved from being with to judging.
When I went to occupational therapy school I was introduced to nociception and the biological underpinnings of pain. I wasn’t, at that time, taught anything about the brain, attention, emotions or any social responses to pain behaviour. Like most health professionals educated in the early 1980’s, pain was a biological and physical phenomenon. I suppose that’s why it can be so hard for some of my colleagues to unlearn the things they learned way back then, and begin to integrate what we know about psychological and social aspects of our pain experience. Because pain is a truly biopsychosocial experience. Those pesky psychosocial factors aren’t just present in people who have difficulty recovering from pain, they’re actually integral to the entire experience.
Anyway, ’nuff said.
Today I stumbled across a cool study exploring two of the psychosocial phenomena that we’ve learned are involved in pain. The first is catastrophising. And if you haven’t got your head around catastrophising it’s probably time to do so. It’s one of the strongest predictors of disability (Edwards, Dworkin, Sullivan, Turk & Wasan, 2016). Catastrophising is the tendency to “think the worst” and consists of ruminating (brooding on), magnifying (over-estimating the negative impact) and helplessness (feeling as if there’s nothing you can do). The second is empathy, or the ability to sense other people’s emotions, coupled with the ability to imagine what someone else might be thinking or feeling. Empathy is not the same as sympathy which seems to be about the emotions a person experiences while observing another’s emotional state. In fact, separate parts of the brain are involved in the two experiences (Cuff, Brown, Taylor & Howat, 2014).
Back to the study. This study examined conditioned pain modulation in partners observing their partner undergoing a painful experience. It was carried out by Gougeon, Gaumond, Goffaux, Potvin and Marchand (2016) in an attempt to understand what happens to the pain experience of people watching their loved ones in pain. The experimental protocol was (1) baseline; (2) assessing pain VAS 50; (3) pre-CPT heat pain testing (thermode preimmersion at a fixed temperature); (4) CPT (either at 201Cor71C); and (5) post-CPT heat testing (thermode postimmersion at the same fixed temperature). What they did was ask the participants to submerge their right hand in a freezing cold waterbath while video recording them. They then asked their partners to place their right hand in lukewarm water while watching the video recording. Participants were asked to rate their pain intensity.
What they found was the higher the catastrophizing score was, stronger was their descending pain inhibition when they were watching either themselves or their spouse in pain. In women, the more empathic the women were, the better was their descending pain inhibition when they observed their spouse in pain.
This is extraordinary. Firstly, the finding that there was a correlation between catastrophising score and descending inhibition contradicts other research studies – Gougeon, Gaumond, Goffaux, Potvin and Marchand suggest that although cognitive and emotional processes underlying catastrophising increase pain perception and decrease inhibition, their experimental design may have increased pain perception during the conditioned stimulus which may have triggered more conditioned pain modulation. They also suggest that the catastrophising level of participants increases their perceived pain, explaining why it correlates with conditioned pain modulation efficiency.
Secondly, women were more distraught than men by observing pain in others. Adopting the perspective of a loved-one elicited stronger activation in regions involved in the “pain” matrix than adopting the stranger’s perspective (Cheng et al), and the authors suggest that empathy is a powerful factor involved in pain modulation while observing someone in pain. This shows that descending inhibition is influenced by physical stimulus characteristics (such as intensity or location), as well as personal cognitive dimensions. A far cry from the notion that psychosocial factors play little part in modulating our pain experience.
What does this actually mean for us?
Well, to me it suggests that we need to be aware of our own empathic response to observing someone else who is experiencing pain. Let’s put it this way: if I’m an especially empathic person (and especially if I tend to catastrophise) and I see people who are experiencing pain in my clinical practice, my own emotional and cognitive response to seeing people may influence my behaviour and practice. For example, I might be less willing to tell people that I don’t have a way to reduce their pain. I might pursue more “heroic” healthcare – send people off for more treatments, try for longer with unsuccessful treatments “just in case”, I might even send people away from my care because I find it hard to tolerate being around someone who “doesn’t respond”.
You see, being empathic and catastrophising tends to elevate feelings of distress in the presence of pain. If we don’t have effective ways to manage our own distress when we are in the presence of someone who is indicating they’re sore, we’re at greater risk of developing burnout and of feeling frustrated (Gleichgerrcht & Decety, 2014).
For this reason I’m a fan of using mindfulness because it does help people to step back from the emotional judgements of experience, and in particular the negative impact such judgements have on both interactions and emotions (Dobkin, Bernardi & Bagnis, 2016).
Cheng Y, Chen C, Lin CP, et al. Love hurts: an fMRI study. Neuroimage. 2010;51:923–929.
Cuff, B. M. P., Brown, S. J., Taylor, L., & Howat, D. J. (2014). Empathy: A review of the concept. Emotion Review, 8(2), 144-153. doi:10.1177/1754073914558466
Decety, J., Yang, C.-Y., & Cheng, Y. (2010). Physicians down-regulate their pain empathy response: An event-related brain potential study. Neuroimage, 50(4), 1676-1682.
Dobkin, P. L., Bernardi, N. F., & Bagnis, C. I. (2016). Enhancing clinicians’ well-being and patient-centered care through mindfulness. Journal of Continuing Education in the Health Professions, 36(1), 11-16.
Edwards, R. R., Dworkin, R. H., Sullivan, M. D., Turk, D. C., & Wasan, A. D. (2016). The role of psychosocial processes in the development and maintenance of chronic pain. The Journal of Pain, 17(9, Suppl), T70-T92.
Gleichgerrcht, E., & Decety, J. (2014). The relationship between different facets of empathy, pain perception and compassion fatigue among physicians. Frontiers in behavioral neuroscience, 8, 243.
Gougeon, V. M., Gaumond, I. P., Goffaux, P. P., Potvin, S. P., & Marchand, S. P. (2016). Triggering descending pain inhibition by observing ourselves or a loved-one in pain. Clinical Journal of Pain, 32(3), 238-245.
The governing principles and purposes of International Association for the Study of Pain (and thus NZ Pain Society) are clear that “IASP brings together scientists, clinicians, health-care providers, and policymakers to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.”
There is no mention in this purpose of the people who experience pain. I think this is an omission.
Pain is a subjective experience. This means we can only be informed about pain when people communicate about it. So many aspects of pain have not been explored in a great deal of detail: things like gender, the lived experience of “good” outcomes vs “bad” outcomes, the use of labels like “failed back syndrome”, the “what it is like to be” a person receiving types of treatments, even determining whether a treatment is acceptable in the context of the real world – or not.
If we want to reduce the burden of pain within our population, shouldn’t we be incorporating the views of people living with pain? so the aims and priorities of those living with pain are included, increasing public awareness of pain and what it means to counter the prevailing attitudes towards people living with pain?
There is, however, a divide between “us” and “them”. “Us” being privileged to know about pain, to develop research agendas, to study pain and translate into improved pain relief, while “them” are passive recipients of such efforts. This doesn’t fit with my views of the reducing gap between treatment provider and recipient, or of the relationship of collaboration that must exist between a person wanting help and those giving it. And it doesn’t afford a strong voice to people living with pain who have as valid a view as those who do not live with pain.
Is there room for a person-focused approach in pain research? And can people living with pain have a voice?
I’ve been reading some of the very old medical journals, ones like the New England Journal of Medicine from 1812. In this article, J. G. Coffin expounds on the use of cold bathing saying “For several years past from May to November, I have been in the habit of walking or riding on horseback freely til 12 or 1 o’clock of the day, hastening to the water’s edge, and plunging in with the least possible delay; and in no instance have I regretted the habit, but on the contrary have found it alike grateful and invigorating.” Now I’m not about to suggest we all begin cold bathing, but what I want to point out is the very personal nature of this account.
Compare this with an excerpt from Martel, Finan, Dolman, Subramanian et al (2015) discussing self-reports of medication side effects and pain-related activity interference: “Despite the potential benefits of each of these medications for the management of patients with pain, it is well known that the combination of a wide range of medications may lead to a number of adverse side effects, including nausea, dizziness, headaches, constipation, and weakness. These medication side effects are frequently observed in clinical settings and represent a complex pain management issue.” (p. 1092).
Patients, not people, are discussed in the latter paper, even though the subject of this study is the experience of people taking medication for their pain. Numbers of side effects. Self-reports of pain intensity, reduced to a 0 – 10 scale. “Negative affect” reduced to numbers. Interference in three areas of activity rated using the same scale.
While I applaud the need to measure variables of importance, I find it interesting that articles about subjective experiences of people feature far less prominently in our esteemed journals of pain research than those presenting a one-step-removed depersonalised view of what is a human experience.
In recent months I have been reading about the space that occurs between a clinician and patient. Benedetti’s writings on The Patient’s Brain (which, incidentally, also and equally discusses the clinician’s brain) help unpack that special place in which ritualised relationships including power and plea are played out every day. What I draw from Benedetti’s book is that while people seeking treatment appear the supplicants, in fact it is they who determine (to a great degree) whether a treatment will be helpful or not. The meanings ascribed to the interaction areformed by the person seeking help. Clinicians play out a role according to the “rules” of this interaction.
In a treatment setting we are but two humans meeting in a shared space. The quality of that interaction, and indeed the benefit experienced by the recipient of treatment, is strongly influenced not only by that person’s expectations, but also by the degree of empathy expressed by the treatment provider. As Garden (2008) states “The biomedical approach to medicine all too often overrides concern about patients’ psychological and social experiences of illness” (Garden, 2008, p. 122). She points out some of the factors that lead to difficulty with empathy in clinical encounters are often about social and cultural issues – too little time, sleep deprivation, a clinical culture that neglects clinician’s personal identity and physical experience (p. 122).
We should also know that downregulating empathy for people in clinical encounters can be a self-care strategy, as Reiss indicates in a brief paper in 2010 (Reiss, 2010). Downregulating the “pain empathy” response involves inhibiting neural circuits such as the somatosensory cortex, insula, anterior cingulate cortex, and periaqueductal gray. Downregulating these areas also “dampen[s] negative arousal in response to the pain of others”. She goes on to say “without emotion regulation skills, constant exposure to others’ pain and distress may be associated with personal distress and burnout” (p. 1605). However, the harm caused by dehumanising, and unempathic healthcare results in focusing on organs and tests and poorer outcomes, as well as greater burnout, increased substance abuse and more patient complaints (p. 1605).
Cohen, Quintner, Buchanan, Nielson & Guy (2011) writing movingly of the potential role health professionals have in stigmatising those experiencing chronic pain. I wonder if the very way we investigate pain, the scientific model so often used to examine aspects of pain and pain management that works by compartmentalising people into “them” (usually people with pain) and “us” (usually researchers and clinicians) also leads to a sense that “we” are different somehow from people who experience pain. And hence from there to organisations established to study the pain of “them” without actually including “them”.
I wonder how many people working in the field of pain and pain management experience pain. Hopefully ALL of them sorry, US. And that means we need to begin thinking about how easily any one of us could become a person living with pain, and perhaps begin considering how we could work together to shift the societal belief that there is a “them” and “us.
Cohen, Milton, Quintner, John, Buchanan, David, Nielsen, Mandy, & Guy, Lynette. (2011). Stigmatization of patients with chronic pain: The extinction of empathy. Pain Medicine, 12(11), 1637-1643.
Garden, Rebecca. (2009). Expanding clinical empathy: an activist perspective. Journal of General Internal Medicine, 24(1), 122-125.
Martel, Marc O. , Finan, Patrick H. , Dolman, Andrew J. , Subramanian, Subu , Edwards, Robert R. , Wasan, Ajay D. , & Jamison, Robert N. . (2015). Self-reports of medication side effects and pain-related activity interference in patients with chronic pain: a longitudinal cohort study. Pain, 156(6), 1092-1100.
While we might laugh about the so-called typical ‘I will fix it’ response of some men when their partners talk about problems (when what the woman really wants is a hug), it seems that much of our research into pain behaviour, particularly verbal expressions of pain, has missed something. I’m not a major reader of relationship literature, but I do read a lot about pain behaviour, and something I’ve noticed is the almost exclusive orientation toward the operant conditioning model when it comes to expressing pain in a social setting.
In operant model of pain behaviour, these behaviours are enacted to communicate to others. Responses to those behaviours may reinforce or punish those behaviours – and there is a good deal of evidence to support this model. It seems to be supported by evolutionary theory in that pain behaviours elicit resources from others, and serve to obtain help. One focus of therapy traditionally is to reduce the number of pain behaviours, in order to reduce the identification of the individual with helplessness or the sick role.
Cano and Williams, in this paper, suggest an alternative view of particularly verbal utterances about pain in relationships – they suggest considering an interpersonal process model of intimacy.
In this model, the things we say that disclose emotional content serve to foster and strengthen intimacy if they are met with empathy and validation. Cano and Williams state: ‘verbal communications about one’s thoughts and feelings about pain, may entail attempts to disclose emotion, recruit emotional support, and build intimacy.’
They go on to say ‘An empathic and concerned response from the partner may also contribute to intimacy. Emotional validation, including empathic responses, enhances the emotion regulation process for both partners because such responses allow each person to process stressful or aversive stimuli.’
In other words, if the partner doesn’t respond empathically, this is usually interpreted to mean rejection and disregard for the partner and usually negatively affects emotion regulation, but when the partner does respond with empathy, the relationship is stronger and more intimate.
What might this mean in therapy?
Well, up until now, operant theory has supported the idea of reducing or minimising pain behaviour, including talking about pain or eliciting emotional or practical support from a partner. This process model suggests that some types of communication may serve to improve the relationship. Validation of emotional content by the partner has in one study correlated negatively with punishing spouse responses, while invalidation correlated positively with punishing spouse responses – and the emotional content (rather than the words) made the major difference between the two types of response (Cano, Barterian & Heller, 2008).
This suggests that a simple ‘let’s eliminate the negative’ may not benefit the relationship. Strong relationships enhance coping, and relationships are strengthened when what one spouse is seeking is matched by the other spouse.
Empathy, caring, concern, and closeness may be desired when a person with pain discloses emotion, not ‘‘expertise” or problem-solving, which could signal invalidation of emotion.
This may mean clinicians helping partners (and families) learn to communicate more effectively – and something that has become very apparent to me is how poorly we as humans can communicate about pain, especially when it comes to setting boundaries, asking for help, or seeking emotional support. It takes a good deal of skill to express what it is that we really want, and to clarify or restate what we want if initially we fail to get it.
Assertiveness has a bad rap very often – it can mean all sorts of strident and aggressive ways to ‘get the point across’, when in fact it is simply about being respectful of each other and oneself. A good number of factors can get in the way of effective communication such as long-standing scripts ‘I should be able to cope alone’, ‘I must not disagree’, ‘I don’t have the right to ask’, as well as limited skills in regulating emotions when the message isn’t received in the way it was hoped.
At the very least, something we can do as clinicians is listen to the people we are working with, and while we don’t want to reinforce helplessness (which, by the way, we will do if we offer ‘solutions’ rather than simply acknowledging the situation), we can help people feel more comfortable with difficult emotions if we ourselves can be mindful and allow ourselves to ‘sit with’ those very emotions. By modelling effective communication ourselves, we can help validate and strengthen our relationship with the person, while not necessarily attempting to ‘fix’ or ‘reduce’ the distress. Then we can turn the conversation to things that are good, achieved and helping the person move on.
Some brief pointers as to how:
ask about what the person has been up to rather than how their pain is
if they say they’ve had a hard time, acknowledge this ‘It’s been a real challenge to get here’. Then pause – and add ‘it’s really great to see you here, how did you manage it’ as a way to move on towards positive coping
when they foresee snags or problems, acknowledge that it’s not easy to do what we’re asking. Then ask what they think is the ‘next best step’ towards doing what you’re currently working on.
respond to the emotional content by empathic reflection, rather than getting caught up in how to solve the practical problem – that’s probably not what the person is asking for, and even if it is, empathy can go a long way towards helping the person accept that you are there for them rather than to ‘fix’ them
The paper by Cano and Williams goes on to discuss appropriate research strategies that might help us understand more about interactions in couples. It’s difficult for me to read this without adding ‘if you can get the couple to come in!’ because so often people seem to think that they ‘should’ cope with ongoing pain alone. It would be great to see far more emphasis on people and their relationships and social context in the next ‘new wave’ of chronic pain management.
Cano, A., & Williams, A. (2010). Social interaction in pain: Reinforcing pain behaviors or building intimacy? Pain, 149 (1), 9-11 DOI: 10.1016/j.pain.2009.10.010
Cano A, Barterian JA, Heller JB. Empathic and nonempathic interaction in
chronic pain couples. Clin J Pain 2008:678–84
I have a bit of a theme happening – health care interactions. I think it’s because this week I’ve been talking about this with patients, and it seems to be something that either raises the hackles or fills them with gratitude! Anyway, I was glad to find this paper the other day on ‘perceived quality of doctor–patient interaction in rehabilitation’. This is slightly different from the usual focus, which is often on interactions in primary care.
It’s an interesting paper written by a group of researchers in Germany. They describe the use of a newly-developed rating instrument, the ‘P.A.Int-Questionnaire’, which stands for (in German) ‘Patient-Arzt-Interaktion’. I’m guessing that’s German for ‘patient-doctor interaction’ (correct me if I’m wrong!). By using this, they aimed to examine the relationship between perceived quality of interaction and long-term treatment outcomes.
The quality of interactions between patients and clinicians were rated on three dimensions – affective behaviour (ie warmth, empathy, ‘coherence’); instrumental behaviour (ie information exchange, structuring and reinforcement); and participation and involvement of patients.
I’ll just briefly describe the methodology, before cutting to the findings and then going onto how this might influence practice in chronic pain management.
Two different questionnaires were developed – tapping into the same domains, but one for patients and one for clinicians.
Seven rehabilitation clinics were involved in the study, with 61 doctors and their 470 patients reviewing their interactions with each other on admission, discharge and ward round. Patients also rated their health status on admission, discharge and six months later.
The key study questions were
whether there were similarities between the patient rating of the experience, as compared with the clinicians rating;
what the relationship was between the perceived quality of the interactions and long-term patient outcomes;
whether there were any differences between those perceiving good interactions and those who perceived interactions as poor; and
whether depression, anxiety or pain intensity influenced those ratings or outcomes.
Patients and clinicians both rated affective behaviour in interactions in a similar way, and quite positively. So people were happy with the warmth demonstrated in the consultations.
Instrumental behaviour (information and structuring) wasn’t viewed as positively by patients as it was by clinicians – it seems that clinicians believe they are better at information exchange and guiding an interaction than what the patients experience is.
Patients who were happy with the interactions they had on admission were more likely to respond well to treatment in terms of pain reduction, as well as to anxiety when they were discharged – and this was maintained even to six months after discharge.
The final conclusions from the authors of this study relate to both the questionnaire itself and the findings about quality of interactions and treatment outcomes.
Firstly they indicate that the questionnaire has adequate internal consistency and is sensitive to different situations and subjects (with recognition that the instrument needs further work in terms of factor structure and validity/reliability).
Secondly, they identify that improvements with respect to pain intensity and pain frequency at discharge and six months after discharge were stronger and more sustainable in the patient group reporting high quality of interaction with their clinician. Again, the authors point out thatthat there are some limitations with respect to interpreting these findings:
Patients rating their interactions as high quality also reported higher pain intensity at admission. This could mean their pain scores ‘regressed to the mean’ (ie, reduced from an artificially high level to a more ‘usual’ level simply as a measurement artifact), or that these patients obtained better interactions from clinicians because they had higher pain intensity. Another drawback to the study is the 40% of patients who were unavailable for the 6 month followup measure.
A further point the authors make is that although pain, anxiety and mood improved, functional measures did not change (good point!). I note also that information about demographics and type of patient (chronicity of problem, previous health status and so on) wasn’t available, so we can’t determine whether there were differences between clinics.
What can we make of these findings?
It seems that these clinicians were really nice people – they conveyed warmth and empathy, and their patients liked this. They didn’t, however, do so well in terms of information exchange, guiding the discussion, or ‘making it work’ (actions). This might mean that although these clinicians were nice people they maybe hadn’t developed the specific skills involved in structuring a patient interaction.
While the clinicians involved in this study were physicians, I wonder whether occupational therapists, physiotherapists, nurses or even social workers could also be relatively under-skilled in the specifics of instrumental behaviour. I’m hoping that psychologists have some skill in this area – but I’m not entirely sure.
What was interesting for several reasons was the specific finding that people who rated the interactions very positively experienced better outcomes even in the long-term. Now I don’t want to over-interpret this finding, but it does make me wonder whether this study is tapping into one aspect of the so-called placebo effect, or ‘meaning response’. After all, one of the main differences between ‘alternative’ health care providers and those of us working in, for example, a public health system, is the time available for a consultation. At the very least, the longer time available means more opportunity to demonstrate caring and empathy, and for information exchange.
At the same time, ‘alternative’ therapists positively engage with their patients to involve them in their (sometimes) complex treatment regimes (ever tried homeopathic treatments? you often have to stop using peppermint toothpaste, eating peppermints, stop drinking tea, coffee, chocolate…and I don’t even WANT to think about colonic treatments!). Of course, we’re not given the number of patients who drop out from ‘alternative’ treatments either, so I guess I’m not comparing apples with apples here!
I think I’ll go about reviewing my interactions in terms of these three dimensions for a while – and then see what I need to learn to improve my communication with patients.
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Susanne Dibbelt,, Monika Schaidhammer, Christian Fleischer, Bernhard Greitemann (2009). Patient–doctor interaction in rehabilitation: The relationship between perceived interaction quality and long-term treatment results Patient Education and Counseling : 10.1016/j.pec.2009.07.031
Explaining to someone that seeing a psychologist about chronic pain might be helpful can be a bit like this:
Yup, brick wall – hard object!
I can see it from the person’s point of view – it’s taken a long time (usually) for medical and other people to recognise that this pain isn’t simply going away, and isn’t about the person being ‘pathetic-why-don’t-you-just-pull-yourself-together’, so when someone suggests that psychology might be helpful it’s like saying ‘You’re nuts, you’re just losing it’ – or worse, ‘you’re a hypochondriac’.
I thought it might be helpful to review some ways to introduce the idea of seeing a psychologist (or other allied health person), or using a CBT perspective in pain management. (more…)
I was taking a quick wander through some of the headlines on my MedWorm feed this morning, when I stumbled on a headline saying ‘It just hurts’. I had to click on it and here is what I read:
Me: “Hello, so you’re having some chest pain?”
Patient: “It just hurts.”
Me: “When did it start?”
Patient: “It just hurts.”
Me: “Where on your chest?”
Patient: “It just hurts.”
Me: “Anything make it worse?”
Patient: “It just hurts.”
Me: “Ever had this before?”
Patient: “It just hurts.”
Me: “Fine, enough, I’ll just order a bunch of tests.”
Now I know this is in an emergency department setting, so things are a bit different from my chronic pain setting, but my immediate thought was that this patient was so scared he couldn’t find words to say what was happening to him – but all I read in this exchange was a doctor trying to diagnose.
It could be a life and death situation – ‘heart attack’ or something – but at the same time, I wonder what would have happened if someone had spent a moment or two reflecting to the patient that he sounded scared, that all kinds of feelings can take over when you have a pain, and that it can be hard to think straight at those sort of times. Some reassurance that things are under control now and he’s in a safe place.
I also wonder whether explaining why the doctor was asking the questions, and some of the train of thought of the doctor might have helped. And finally, I do wonder if the patient had been told to breathe out slowly, and take some time to relax his body whether the patient might have been more ready to describe what was going on.
Sometimes in our rush to diagnose and fix, or work on ‘problems’ we can forget that developing rapport by listening and showing that we understand the emotions that happen when people experience pain is possibly the best medicine we can give.
One way to reduce resistance is simply to repeat or rephrase what the client has said. This communicates that you have heard the person, and that it is not your intention to get into an argument with the person.
Client: But I can’t quit drinking. I mean, all of my friends drink! Counselor: Quitting drinking seems nearly impossible because you spend so much time with others who drink. Client: Right, although maybe I should. Amplified Reflection
This is similar to a simple reflection, only the counselor amplifies or exaggerates the point to the point where the client may disavow or disagree with it. It is important that the counselor not overdo it, because if the client feels mocked or patronized, he or she is likely to respond with anger.
Client: But I can’t quit using. I mean, all of my friends use! Counselor: Oh, I see. So you really couldn’t quit using because then you’d be too different to fit in with your friends. Client: Well, that would make me different from them, although they might not really care as long as I didn’t try to get them to quit. Double-sided Reflection
With a double-sided reflection, the counselor reflects both the current, resistant statement, and a previous, contradictory statement that the client has made.
Client: But I can’t quit drinking. I mean, all of my friends drink! Counselor: You can’t imagine how you could not drink with your friends, and at the same time you’re worried about how it’s affecting you. Client: Yes. I guess I have mixed feelings. Shifting Focus
Another way to reduce resistance is simply to shift topics. It is often not motivational to address resistant or counter-motivational statements, and counseling goals are better achieved by simply not responding to the resistant statement.
Client: But I can’t quit drinking. I mean, all of my friends drink! Counselor: You’re getting way ahead of things here. I’m not talking about your quitting drinking here, and I don’t think you should get stuck on that concern right now. Let’s just stay with what we’re doing here – talking through the issues – and later on we can worry about what, if anything, you want to do about it. Client: Well I just wanted you to know.
This example is from problem drinking, but it applies to many situations – such as when people are trying to explain why they can’t use a pain management strategy!
James T Hardee writes about Empathy in healthcare – ‘Unfortunately, many physicians were trained in the world of “Find it and Fix it” medicine, a world where empathetic communication was only an afterthought–if this behavior was considered at all. Empathy was known as “bedside manner,” a quality considered innate and impossible to acquire–either you were born with it or you weren’t. More recently, greater emphasis has been placed on empathy as a communication tool of substantial importance in the medical interview, and many experts now agree that empathy and empathetic communication are teachable, learnable skills’.
I think we could add in a number of other health care professionals who may have been taught listening skills early in training, but in the busy-ness of clinical life, might forget the basic skills.
Remember the reasons you decided to start working in healthcare? And the reasons you stay? There are other less demanding ways to earn a living – but we all chose healthcare. This article from Positive Psychology Daily discusses meaningful work. Perhaps one way of reminding ourselves to be empathic, compassionate and human is to remember the meaning in our work.
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Just for something a little different today: I nipped on over to YouTube and searched for ‘pain’ – what did I come across? Well, apart from h e a p s of really stupid ‘Jackass’ type of home video inflicting pain on each other and laughing maniacally… there were a couple of really interesting psychology clips that caught my eye.
This one made me think, particularly after considering the difficulty some therapists have in ‘pushing’ patients to do activities despite pain…(see my post from a couple of days ago ).
Jean Decety, Professor, Psychology and Psychiatry, explains his research into pain responses and how physicians learn to turn off the part of the brain that activates feelings of empathy. Decety co-authored “Expertise Modulates the Perception of Pain in Others,” published in October 2007, which discusses the necessary ability of a doctor to regulate pain perception in order to better treat patients.