The Limits of "Epistemic Injustice" in the Clinic

Sick people often report frustration about their encounters with doctors: they report not being listened to, not being taken seriously, not being able to successfully communicate their issues, not getting answers to their questions, and more. In 2014, Havi Carel and Ian James Kidd published a paper where they analysed this phenomenon in terms of epistemic injustice. This paper has been enormously influential, to the point where it has become the main lens through which patient frustrations with their doctors is analysed today. In this blog post, I want to highlight some of the limits of this approach.

The notion was introduced by Miranda Fricker in her 2007 book Epistemic Injustice. She defines epistemic injustice as a form of injustice that affects the subject “specifically in their capacity as a knower”. This is somewhat obscure, but the two subtypes of epistemic injustice that she defines help shed some light on the phenomenon she's trying to elucidate. Firstly, she discusses testimonial injustice, which she explains occurs when one's testimony is discounted on account of one's membership of an oppressed group. The idea is that, because of negative stereotypes associated with one's social group, one is believed less than one otherwise would be. For instance, because of stereotypes that paint women as unreliable, irrational, emotional, etc, a woman might be given less credibility when reporting a set of facts than she would have had she been a man. Secondly, Fricker discusses hermeneutic injustice, which occurs when the set of concepts that a given society has unfairly prevents a group of people from making sense of their experiences. She illustrates this phenomenon by pointing to the fact of sexual harassment before groups of feminists coined the term. The idea is that women were subjected to a form of harm that could not be articulated using the socially available concepts. 

Carel and Kidd argue that these notions can help us make sense of the frustration that many people feel in their encounters with doctors. They explain that sick people are viewed through a prejudicial lens as “cognitively unreliable, emotionally compromised, or existentially unstable”. As a result of this prejudice, doctors often fail to ascribe the right amount of credibility to sick people's reports, and their testimony is often “dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming”. In this way, sick people are subjected to a testimonial injustice: they are afforded less credibility than they should be because of negative stereotypes about them as a group. Moreover, the dominant concepts used in the clinic are, according to Carel and Kidd, not particularly well-suited to making sense of illness. They privilege 'objective' measures of health and disease that are of course important, but cannot capture the lived reality of illness. In this way, the set of concepts available in the clinic do not allow patients to make sense of their experiences, and they are subjected to a hermeneutic injustice. 

In some illnesses, the frustrations of sick people are particularly pronounced. This is the case especially with what I called "controversialised" diseases in a previous blog post, such as myalgic encephalomyelitis (ME). In a 2017 paper, Charlotte Blease, Havi Carel, and Keith Geraghty attempt to make sense of this intense frustration by appealing to the epistemic injustice framework. They begin with the observation that many people with ME report “feeling dissatisfied, disbelieved, and distressed” in their encounters with doctors. They present ME as a “contested” disease, one over whose aetiology “controversy exists”. They suggest that the disagreement between the biomedical and psychosomatic schools of thought on the disease is of a purely scientific, apolitical nature: the problem, according to them, is that “medical science has yet to explain” its aetiology and pathophysiology. As such, they refuse to take a stance on this dispute, and despite acknowledging the existence of a strained disagreement between doctors and their patients about the validity of the psychosomatic approach to ME, they locate the epistemic injustice that patients face elsewhere. 

They argue in the first instance that patients suffer from testimonial injustice, not in the domain of medical knowledge, but in the domain of phenomenological knowledge: the distinctively first-personal knowledge that patients have about their lived experience of illness. They argue that this knowledge is unfairly discounted by doctors who hold prejudicial beliefs about people with ME. But this restriction to the phenomenological aspects of illness is unstable. Doctors usually concede that the patient has first-personal authority over their own experience: they are careful nowadays not to contradict pure experiential reports (“I believe that you feel that way”). But the experiential reports that doctors do accept are so thinned out that they become entirely subjective. The patient who is viewed through a psychosomatic lens cannot be seen as reliable when they assert that their functional limitations have gotten worse; they can only be seen as reliable in their assertion that they have the impression that it has. The scope of their domain of expertise is shrunk to such an extent that any attempt to assert an objective fact about their disease, such as, for instance, that it has worsened, makes medical presuppositions—here, the presupposition that the patient does have a well-defined disease, which can get worse. In other words, experiential claims are either so thinned out as to not be testimony in any robust sense, or they are thick enough to count as testimony, but they become indissociable from medical claims.

Thus, the contention between doctors and patients cannot be restricted to the experiential domain: it necessarily overspills into the medical domain. But Blease et al, we have seen, refuse to take a stance about which theoretical approach to ME is the right one. As such, they cannot assert that people with ME are subjected to a form of epistemic injustice when their testimony about the physical basis of ME is discounted, whether this is first-personal reports that e.g. their own disease has progressed with exertion, or the presentation of scientific evidence on the pathophysiology of PEM. Instead, they must restrict themselves to the much weaker claim that the problem, in the medical domain, is that patients cannot “voice a different viewpoint” without “feel[ing] belittled or even minimised”. They describe this as an epistemic injustice, but it is unclear how it can be one: the problem they identify is not that doctors fail to ascribe due credibility to their patients’ testimony, but that they do not treat their patients with enough respect when they profess to holding different opinions. To solve this problem, doctors do not need to start believing their patients, they simply need to stop being rude. The harm to which they subject their patient is a failure of politeness, perhaps even respect, but it's not an epistemic injustice. 

Without an independent assessment of the reliability of patients’ and doctors’ knowledge on the medical aspects of ME, it is simply impossible to determine whether the dispute between patients and doctors is an epistemic injustice. This is vividly illustrated by Eleanor Byrne’s response to Blease et al. Byrne presents claims made by doctors to the effect that an ME diagnosis is a “self-fulfilling prophecy”, that it “prevents [patients] from engaging fully with the existential conditions of their lives which is what they can’t cope with”, and that it “set[s] them off on a track which will get them nowhere”, because they’re “just looking for a label”. She explains that these claims need not be seen as indicative of epistemic injustice, for they “demonstrate sensitivity to legitimate and potentially fruitful paths of inquiry”. In other words, doubting and undermining patients’ claims about the pathophysiology of their disease is not an injustice against patients, but simply good science. Byrne goes as far as to argue that to “negatively stereotyp[e]” doctors as prejudiced against their patients is to commit an epistemic injustice against them. 

Whether the clinical encounter involves testimonial injustice therefore depends on substantive views about the plausibility of the two approaches to the aetiology of ME. This is not surprising, since testimonial injustice, by definition, is the ascription of a lower degree of credibility to an agent than the one they ought to be ascribed. The degree of credibility an agent ought to be ascribed therefore needs to be fixed before an assessment can be made whether a particular ascription of credibility constitutes or not an epistemic injustice. To determine whether people with ME suffer a testimonial injustice when their testimony about the objective aspects of their illness is discounted, we therefore need to evaluate the reliability of this testimony. If one believes that people with ME are not reliable when it comes to the objective aspects of their disease, one should conclude, as Byrne appears to, that testimonial injustice does not occur. If on the other hand, one believes, perhaps on the basis of considerations I outlined in a previous blog post, that people with ME are reliable when it comes to the objective aspects of their illness, one can conclude, as I do, that testimonial injustice does occur: people with ME are judged less reliable than they in fact are, by virtue of widely held prejudices against patient competence in general, and against the rationality and integrity of people with ME more specifically. 

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Once the reliability of people with ME and the corresponding unreliability of their doctors is accepted, the epistemic injustice framework can be used to accurately describe several aspects of the clinical encounter. As we have just seen, it can yield the verdict that doctors who, as a result of their conception of patients as incompetent, unreliable, and untrustworthy, fail to recognise their testimonial authority, thereby commit a testimonial injustice. Are patients also subjected to a hermeneutic injustice, where they are unfairly deprived of the concepts needed to make sense of their experience? I explained in a previous blog post that, while ME was originally understood as characterised by temporary or permanent progression with exertion, that is, by post-exertional malaise (PEM), it was redefined by controversialisers as consisting primarily of feelings of fatigue. This eclipsing of PEM allowed a turn away from biomedical investigation into its pathophysiology, and towards psychologising theories of subjective fatigue states. These theories made their way to practising clinicians, and now constitute the framework through which almost all of them apprehend people with ME. This framework not only leads doctors to form harmful interpretations of their patients as fakers and malingerers, but it also actively hinders the sense-producing activities of people with ME: most saliently, it prevents them from being able to communicate to their doctors that their reason for restricting their activity levels is not that they feel too fatigued, but rather that they are seeking to avoid PEM.

One might be tempted to theorise this in the terms of hermeneutic injustice. Fricker originally defined hermeneutic injustice as a generalised conceptual impoverishment, that is unfairly produced, and that results in the unintelligibly of the experiences of the dominated, to both the dominant and the dominated. This definition does not apply to our case: while the epistemic resources of physicians do prevent them from accurately cognising the phenomenon at hand, this problem is not shared by communities of sick people, for as we have seen, these communities have developed a sophisticated conceptual apparatus with which to make sense of their disease, and much of their advocacy consists in attempting to increase the uptake of this apparatus among those tasked with researching and treating their disease. Thus, we are not dealing with a case of hermeneutic injustice as Fricker originally defined it. However, Fricker’s work has been developed in generative ways by other scholars. For instance, Rebecca Mason, drawing on the work of Charles Mills has proposed widening the notion to include situations in which dominated groups do have adequate conceptual resources, but these are not recognised or respected by dominant groups, such that theirs is a state of “wilfully sustained ignorance”. In such situations, the dominant actively ignore or dismiss the hermeneutic resources produced by the dominated, and continue to use (Kristie Dotson) or even produce new (Han Edgoose) conceptual resources that stabilise and worsen the harm they incur. This illuminatingly describes the hermeneutic aspects of the epistemic injustice which people with ME incur in the clinic. 

The epistemic injustice framework, once supplemented with an evaluation of knowledge claims, can therefore be usefully applied to the case of ME. It can afford us, as Blease et al had contended, an understanding of what goes wrong in the clinic both testimonially and hermeneutically: people with ME are wrongfully disbelieved, and are incapacitated in their attempts to communicate their experience of illness. But Blease et al’s hope that an examination of epistemic injustice in the clinical encounter can exhaustively explain the discontent of people with ME and their conflicts with their doctors risks eliding some of the non-epistemic and arguably more serious harms that doctors inflict on people with ME. For it is one thing not to be believed, not to be understood; and it is quite another to be kept sick, to be made sicker, and to be killed. A narrow focus on epistemic injustice risks emphasising the harms that patients incur as knowers at the expense of the harm they incur as patients. 

I explained in a previous blog post that psychologising theories serve as reasons for denying care: if a particular symptom is the result of anxiety rather than that of a pathological physiological process, pharmacological intervention besides anxiolytic medication is not warranted. I also explained that they serve as reasons to coerce patients into harmful treatment: if the symptoms are the result of reduced activity, incitation into increased activity presents itself as a salient therapeutic option. These twin forms of neglect and harm can cause disease progression, such that incalculably many people have become unable to work, housebound, or bedbound as a result. They can also cause death: people with very severe forms of ME can become unable to ingest sufficient nutrition, usually because they are too weak to chew, swallow, and digest food. They almost always struggle to receive nutritional support from doctors who refuse to acknowledge that they cannot sustain themselves nutritionally, and in some cases, they starve to death as a result. In light of this, I contend that what primarily explains the feelings of dissatisfaction on the part of people with ME is not, as Blease et al suggest, that they are disbelieved and unheard, but that they are actively neglected and harmed. 

An excessively narrow focus on epistemic injustice can obscure this. For instance, in their study of epistemic injustice among people with ME, Joanne Hunt et al interview a woman called Elizabeth, who says of doctors: “they are just trying to kill you off ”. Hunt et al propose the following interpretation of this comment: “Elizabeth appears to experience epistemic injustice as existential erasure”. This remark appears amidst a discussion of what Hunt et al call the “existential harms” that people with ME incur: Igor, one of their interviewees, explains that as a result of his illness not being taken seriously, “[he] just felt like [he] wasn’t treated like a human being”. But later in the paper, Hunt et al cite Elizabeth again as explaining having been coerced into a graded exercise regimen which worsened her illness to the point that she was having seizures. In light of this, I think that we should interpret Elizabeth’s assertion, not figuratively as an expression of existential erasure in reaction to an epistemic injustice, but literally, as an expression of terror at the fact that people who have life-or-death power over her are physically harming her in unbearable and possibly limitless ways. 

It is true that, should doctors cease to treat their patients in epistemically unjust ways, much of this harm would be mitigated. Doctors who believe their patients about the existence and harm of PEM do not only make them feel heard and perhaps even understood, but they are also much less likely to suggest or impose graded exercise problems that cause disease progression. But a horizon where doctors listen to their patients adequately falls significantly short of what sick people need. For they need not only to be heard, but also for their doctors to be actively competent in the management of their disease. This requires much more than an end to epistemic injustice in the clinic: it requires a radical overhaul to the knowledge production and dissemination mechanisms that underlie ME healthcare, so as to ensure that doctors' beliefs about ME are responsive to scientific evidence, as well as, possibly, structural changes in the provision of healthcare more generally. The epistemic injustice that sick people do incur in the clinic is not the main form of harm they incur, and it is not what needs addressing if people with ME are to be treated well, not only in their capacities as knowers, but also in their capacities as patients.