Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by Eleanor Alexandra Byrne in Medicine, Health Care and Philosophy March 13, 2020
Miranda Fricker’s influential concept of epistemic injustice (Oxford University Press, Oxford, 2007) has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups.
Testimonial injustice is unfairness related to trusting someone’s word. An injustice of this kind occurs when someone is ignored or not believed because they are a woman, because they are black, or broadly, because of their identity. Wikipedia
This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one’s predicament and treat it accordingly. Work on epistemic injustice is therefore at risk of obfuscating legitimate and potentially fruitful inquiry.
Hermeneutical injustice happens when someone’s experiences are not well understood — by themselves or by others — because these experiences do not fit any concepts known to them (or known to others), due to the historic exclusion of some groups of people from activities, such as scholarship and journalism, that shape which concepts become well known. Wikipedia
This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders.
Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice.
Kidd and Carel argue that ill persons are especially vulnerable to testimonial injustice because there is often a presumptive attribution of certain characteristics to ill persons that negatively affects the perceived credibility of their testimony, such as cognitive unreliability and emotional instability. Accordingly, patient testimonies are often dismissed as irrelevant, confused, too emotional or time-consuming (pp. 529–30).
Where there is testimonial justice in healthcare, so they argue, patient testimonies would be recognised, actively sought out, and judged to be, at least in certain respects, epistemically authoritative (p. 532). The authors state that medical professionals have epistemic authority over some matters, but that the same applies to patients, yet the various structures of medical institutions are such that the epistemic authority of the patients is often not accommodated. Kidd and Carel acknowledge occasions whereby the medical professional would be right to exercise epistemic authority, but maintain that in such cases, the clinician can often be overly dismissive (p. 531).
They also argue that ill persons are especially vulnerable to hermeneutic injustice because experiences of illness are often difficult to understand and communicate due to inadequately developed or respected hermeneutic resources (p. 529). Where there is testimonial justice, the clinician will recognise that their failing to make sense of the patient’s experience is not due to any fault of the patient. An appropriately ‘just’ clinician, they suggest, might say ‘the fact that I don’t understand you isn’t your fault but mine … I am untrained in the kind of articulacy you are using, and this hermeneutical context does not provide me with those resources’ (p. 532).
Where there is hermeneutic injustice, then, testimony is not dismissed or disbelieved outright, but there exists a conceptual impoverishment. In which case, there is a lack of epistemic resources belonging to a particular institution, or a lack of epistemic resources being appropriately employed, which prevents the patient’s articulation of their illness-experience from being acknowledged and/or shaping clinical practice. Consequently, patient’s attempts to articulate their experience are often not adequately recognised by medical professionals. In this respect, the two injustices are closely linked and work to sustain one another.
I have highlighted two problems with how the concept of testimonial injustice might be applied to healthcare, using the example of CFS/ME. Although a useful concept which has already aptly shown how CFS/ME patients are vulnerable to suffering from epistemic harm, I have resisted claims that identify testimonial injustices where the epistemic problem can be just as plausibly explained by the medical professional exercising appropriate medical sensitivity within the context of a vast conceptual impoverishment. I have also argued that there is a problem with the idea of the CFS/ME patient as epistemically authoritative over their first-person lived experience, since their status as ‘knower’, of even their first-person lived experience, is highly complex.
I finished by suggesting that the process of gaining epistemic insight into CFS/ME ought to be deeply collaborative. Some researchers have suggested that, in psychiatry and medicine more broadly, there ought to be more collaboration between all ‘stakeholder groups’ (Fulford et al. 2014, p. 113). There are certainly promising avenues for further careful research into what the epistemic contributions of patients can reveal about CFS/ME. In the absence of a biomedical breakthrough, collaboration between patients, researchers, clinicians and medical professionals may prove to be the most effective way to enrichen the conceptual understanding of CFS/ME, empowering both patients and medical professionals.