Tuesday 19 August 2014

Epistemic Injustice and Illness

In this blog post, Ian James Kidd (University of Durham and University of Leeds) and I, Havi Carel (University of Bristol), talk about our research on epistemic injustice.

Many of us are familiar with stories about doctors who don’t listen, large-scale healthcare systems that are impersonal and bureaucratic, and feelings of helplessness when trying to navigate these systems. In the UK these complaints have informed recent changes to healthcare policy, such as the NHS Patient Charter and the NHS constitution. But despite this greater awareness patients continue to voice concerns, which attest to persistent experiences of being epistemically marginalised or excluded by health professionals. Focusing on the epistemic dimension of these situations, we suggest that patients’ testimonies are often dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming.

We recently published a paper examining this phenomenon, which we call epistemic injustice in illness. In the paper we submit this problem to an epistemic analysis, using Miranda Fricker’s notion of epistemic injustice. In her book Epistemic Injustice Fricker argues that “there is a distinctively epistemic kind of injustice” which is a wrong done to someone in their capacity as knower. She identifies two such wrongs, testimonial injustice and hermeneutical injustice. Testimonial injustice occurs when prejudice causes a hearer to assign a deflated level of credibility to a speaker’s testimony. Hermeneutical injustice occurs when a gap in collective interpretative resources puts a speaker at a disadvantage when trying to make sense of their social experiences.

We suggest that these two kinds of injustice characterise many attitudes ill people encounter when they try to voice their opinions about their care, convey their experiences, or state their priorities and preferences. In particular we suggest that an ill person may be regarded as cognitively unreliable, emotionally compromised, existentially unstable or otherwise epistemically unreliable in a way that renders their testimonies and interpretations suspect simply by virtue of their status as an ill person with little sensitivity to their factual condition and state of mind.

We further argue that health professionals are considered to be epistemically privileged, in both warranted and unwarranted ways, by virtue of their training, expertise and third-person psychology. Moreover, they decide which patient testimonies and interpretations to act upon. We contrast cases in which patients are assigned undeservedly low credibility with cases in which patients’ credibility is undeservedly high. For example, the disorder Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is not recognised by many physicians or considered a psychiatric (not somatic) illness. Patients suffering from ME/CFS may be assigned too little credibility.

Contrast this with Munchausen Syndrome (factitious disease), in which people produce or feign disease (e.g. by taking laxatives or wounding themselves) for complex psychological reasons. In these cases, patients take up clinicians’ time and are given considerable medical attention although the symptoms are feigned or made up. We show that these are two ways in which health professionals’ clinical judgement can be skewed as a result of assigning too little or too much credibility to patients.

Finally, we suggest that the structures of contemporary healthcare practice encourage epistemic injustice because they privilege certain styles of articulating testimonies, certain forms of evidence, and certain ways of presenting and sharing knowledge, e.g. privileging impersonal third-person reports, in ways that structurally disable certain testimonial and hermeneutical activities. To address this problem we propose that phenomenology, and in particular a phenomenological toolkit (see this), may provide a useful hermeneutic context within which patients, as well as health professionals, can reflect on and share their illness experiences.

2 comments:

  1. Hi Havi (and Ian),

    I have a question about your comparison between the patient with Myalgic Encephalomyelitis (ME) and the patient with Munchausen Syndrome (MS) and how they are treated by medical practitioners. I see that in cases of ME patients we have a case where oftentimes patients are assigned too little credibility and so perhaps suffer an epistemic injustice, and I take it we should feel that the medical practitioners in such cases are at fault.

    I think that the case of MS might be importantly different. I agree that the patients in these cases are given too much credibility (insofar as they are not really ill in the way in which they present as being), but I am not persuaded that we should feel that the medical practitioners in these cases are at fault. In the ME case, the medical practitioner bases her judgement on the actual illness the patient presents with (and fails to take the patient seriously on the basis of that). In the MS case, the medical practitioner bases her judgement on the apparent illness the patient presents with (unexplained digestive issues or wounds, for example). We might think then that the medical practitioner in this case is not at fault epistemically when she gives undue credibility to the MS patient, since she has no reason to think that a patient of this sort (one presenting with unexplained digestive issues or wounds) is what we might call epistemically suspicious.

    So though I agree that there is a sense in which the patient with ME is not given enough credibility, and the subject with MS is given too much, I think that there’s an asymmetry in these cases with respect to the medical practitioner’s epistemic liability. So I was wondering whether you agreed with this, or whether you thought that we ought to make the same judgement with respect to the epistemic blameworthiness of the medical practitioners in both of these cases?

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  2. Hi
    I don't understand the distinction between ME and Munchausen's. Surely medics are only too well aware that features of Munchausen's are made up or self inflicted but the onus on providing treatment is no different from a so called real disease is if someone has poisoned themselves then treatment is much the same whether accidental or deliberate. Surely the difficulty with diseases like ME is the difficulty of knowing what to do or how to treat.

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