before the nor'wester

“Them” and “us”


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 are formed 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.

Riess, Helen. (2010). Empathy in medicine–a neurobiological perspective. JAMA, 304(14), 1604-1605. doi: dx.doi.org/10.1001/jama.2010.1455

12 comments

  1. Bronnie, thank you for raising this issue. Perhaps it is time to re-name the IASP to IASPP (International Association for the Study of People in Pain). The other issue worth pondering over is how extraordinarily successful we have been in reifying the particular lived experience that we call “pain”. The well-intentioned initiative to categorise chronic (unexplained) pain as a disease-in-and-of-itself exemplifies how some notable people in the world of pain medicine have fallen into this ever so subtle logical trap (Cohen et al. 2013).

    Reference: Cohen ML, Quintner JL, Buchanan DA. Is chronic pain a disease? Pain Med 2013; 14: 1284-1288.

    1. Great idea John. It’s really struck me recently that our national and international organisations for studying our human experience of pain have some gaps in how they’re situated – but as I reflect again, it’s likely a discourse that began in a biomedical context but has yet to move into a social one. I’m about to write a letter to the Editor of NZPS saying pretty much the same thing – where is our “outreach” and inclusion of people living with pain?

  2. Congratulations on yet another well phrased comment regarding the need for more understanding of the patient in pain science. It is, however, not entirely true that patients are not incorporated into the pain science community: The initiative ‘Societal Impact of Pain’ is a good example as well is the patient advocate, Peter Moore (Pain Toolkit) who definitely also has a valid voice.
    The missing link, as far as I can see, is the (lack of) systematic implementation of clinical observations (e.g. the effect of the ‘therapeutic alliance’) in to the study of pain. In a lame attempt to provoke-by-humor I’ve repeatedly suggested that IASP should be renamed ‘IASN’: ‘International Association for the Study of Nociception’ until ‘pain’ can be firmly incorporated into the sciences. The sessions on pain per se is scarce at best at the international conferences. Actually, having attended pain science conferences over the last decade I have never been presented with the opportunity to attend a single session with a scientific approach to the phenomenon ‘pain’ without somehow having to justify a neurophysiological or cognitive theorem for it! Why is it that PAIN in and of itself does not belong in the sciences??? We must start to incorporate new sciences to supplement the existing (and much needed) knowledge of what nociception can teach us about pain. A recent article by Dr. Mick Thacker from King’s College London is a great example of how we can integrate philosophy – and thus a theoretical understanding of consciousness – into pain science.

    Article reference:
    Thacker, MA (2015) Louis Gifford – revolutionary: The Mature Organism Model, an embodied cognitive perspective of pain. In Touch, No 152 (Autumn edition)

    1. Thanks Morten, I agree! The Societal Impact of Pain is one of the very few exceptions to the overall reticence to include people in our understanding of pain. and Pete Moore is awesome! But in the publications and general discourse in scientific journals and conferences it’s incredibly rare to have a person living with pain being featured or even mentioned anywhere. And I think it’s time to stop! Surely now there are enough people who recognise this omission? And I love Mick Thacker’s writing, although I’m not a philosopher (I think I’d need another lifetime to learn philosophy sufficiently well enough to talk knowledgeably about pain). To me it’s the social and personal that seem to be missing from our current examination of pain. I hope to work on this over the rest of my career.

  3. First of all, I completely agree with your perspective, Bronnie.

    The reason why we are beginning to identify this as a problem might be because our medical theories since the Enlightenment have had serious problems (for good reason because of battling against explanations based on superstition, magic, supernatural beings, and divine purpose that have trained us to be highly suspicious of intentional and teleological properties) incorporating the nature of experience/a point-of-view/subjectivity into the causal scientific picture.

    The fact that we have divided the natural sciences from the human sciences and both from the humanities is still a testament to our Cartesian heritage. Faculties at universities (and our hospitals) are often split into “res extensa”-faculties (materialism, natural science, medical science, reductive determinism) and “res cogitans”-faculties (idealism, humanities, phenomenology) with ever growing problems of reconciling between the two. The system thinkers Maturana, Varela, and Gregory Bateson among others began to articulate this problem and tried to reintegrate both the purposiveness of living processes and the experiential component of mental processes back into theory. This seems to still be an ongoing project and the problem of pain highlights this explicitly, I think.

    Thank you for this blogpost.

    1. Thank you so much Adam. It’s an aspect of human experience that merits far more diverse methodologies than a mechanistic one alone. I know there is work being carried out in philosophy, history, the arts – but so much more could help clinicians and people living with pain. I think valuing different approaches to understanding our world will/is coming but does take a long time, and like all renaissances (is that a word?!) is like a revolution that requires so much energy until it builds its own momentum. This does seem to be happening in pockets around manual therapy and physical therapy, and I guess I’m impatient to see it happen more quickly. Oddly enough, occupational therapy theory and practice does integrate a range of methodological and philosophical approaches to understanding our world, but has often been marginalised as irrelevant in a scientific community that values numbers over people. I need to go read Maturana and co to learn the language of the discourse and then to join it!

      1. Bronnie, Adam has highlighted the problem we face – how to transcend the dualistic (body/mind) thinking that pervades our society and, of course, the pain medicine discourse.

        I had long thought about undertaking this daunting project but it was not until I read “The Hidden Connections (2003)” by Fritjof Capra that my journey began in earnest.

        A few of my colleagues joined me in this project and we eventually published our seminal paper in 2008. This led to Milton Cohen and me meeting the wonderful Pamela Lyon and another paper soon emerged.

        Not many have chosen to join this particular discourse and your considered input will be welcomed and valued. As you have correctly observed, occupational therapists are already thinking much along these same lines.

        References:

        Quintner JL, Buchanan D, Cohen ML. Katz J, Williamson O. Pain medicine and its models: helping or hindering? Pain Medicine 2008; 9: 824-834.

        Lyon P, Cohen ML, Quintner JL. An evolutionary stress-response hypothesis for chronic widespread pain (Fibromyalgia Syndrome). Pain Medicine 2011; 12: 1167-1178.

      2. It would be a pleasure to work on this with you. I think the focus on individuals rather than connectedness, on body systems rather than experience and losing our heart (and art) in favour of cold hard facts has got in the way of recognising the messiness of real world life. I know we need the hard sciences, but I think there’s a balance within all of this.

  4. Another wonderful post, Bronnie, one that I hope researchers and clinicians read and take to heart. As a patient I felt like a supplicant for years, that my experience wasn’t all that important in the overall scheme of things and that whatever the doctor told me held all the weight. He was the expert, I was the passive recipient of care.

    There is a drive for interdisciplinary teams in the management of chronic pain, which is great, but too often the ‘team’ never includes the patient. The patient is still the passive recipient of the teams care. I don’t think we can make a significant change for people experiencing pain if they aren’t on the team, if they don’t have a voice, if they’re not at the table of stakeholders making the decisions on how to research, treat, and live with chronic pain.

    I’m still trying to figure out how to have that voice. I’m pretty knowledgeable as a patient on chronic pain, yet I don’t know how best to give patients a say in these areas. Pete has done a great job providing a patient voice, I hope to emulate him and add to the chorus to amplify our message and get it heard by more decision makers in both healthcare and patient advocate groups.

    Thank you again, Bronnine!

    1. Thank you Jo! It’s such a challenge when I know that you know so very much but still don’t feel confident about the best way to help people living with pain help the research and treatment be most relevant to them. I think the more people who decide they CAN live well and that pain doesn’t define them, the more the voice of US will come to the fore. Bring on the painiacs!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s