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