Epistemic Injustice and Illness

IAN JAMES KIDD & HAVI CAREL

ABSTRACT This article analyses the phenomenon of epistemic injustice within contemporary healthcare. We begin by detailing the persistent complaints patients make about their testimo- nial frustration and hermeneutical marginalization, and the negative impact this has on their care. We offer an epistemic analysis of this problem using Miranda Fricker’s account of epis- temic injustice. We detail two types of epistemic injustice, testimonial and hermeneutical, and identify the negative stereotypes and structural features of modern healthcare practices that generate them. We claim that these stereotypes and structural features render ill persons espe- cially vulnerable to these two types of epistemic injustice. We end by proposing five avenues for further work on epistemic injustice in healthcare.

Without the narrative acts of telling and being heard, the patient cannot con- vey to anyone else – or to self – what he or she is going through. More radi- cally and perhaps equally true, without these narrative acts, the patient cannot himself or herself grasp what the events of illness mean.1

1. Introduction

A study published in 1984 found that the average amount of time between a patient beginning to speak and the doctor’s first interruption was eighteen seconds. Of sev- enty-four office visits recorded, only in seventeen (23%) was the patient allowed to complete his or her opening statement of concerns. The authors concluded that this premature interruption of patients resulted in a loss of relevant information.2 We sug- gest that this finding is characteristic of a certain epistemic stance that tacitly incorpo- rates presumptions about the capacities of patients to provide relevant information in healthcare contexts, and which is both epistemically unjustified and epistemically unjust.

We thus propose, in this article, to examine epistemic injustice within healthcare in the developed world. We focus on this type of healthcare in order to avoid making generalisations about other types of healthcare and in order to describe the problem in its simpler form. We note, however, that the issue described here may be prevalent elsewhere and intersect with additional problems existing in other healthcare systems.

Two broad forms of epistemic complaints reliably arise within contemporary health- care practice. The first are what one might call patient complaints, those made by ill persons and especially by those with prolonged and involved experience of modern healthcare, such as the chronically ill. These typically take the form of reports that

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Journal of Applied Philosophy, Vol. 34, No. 2, February 2017 doi: 10.1111/japp.12172

healthcare professionals do not listen to their concerns, or that their reportage about their medical condition is ignored or marginalized, or that they encounter substantive difficulties in their efforts to make themselves understood to the persons charged with their diagnosis and treatment.

The second are physician complaints, understood broadly as those offered by health- care professionals. They often complain that patients provide medically irrelevant information, make odd statements and superfluous remarks about their condition, or otherwise fail to contribute epistemically to the collection of medical data. Taken together, a difficult epistemic situation emerges in which neither group can engage in effective testimonial and hermeneutical relations with the other.

Two features of these epistemic complaints are worth noting. The first is that they tend to have the consequence of complicating – and, in certain cases, compromising – the epistemic relationship between ill persons and the healthcare professionals charged with their care. Such breakdowns in relationship have a range of practical conse- quences, including the unwillingness or inability of ill persons to give complete or accurate reports of their symptoms and adherence to treatment, which in turn can cre- ate a need for additional tests or further referral. The practical consequences of such behaviours can include the jeopardising of the ill person’s treatment and significant costs for the healthcare system when important information is overlooked. Moreover such breakdowns in the epistemic relationship can result in ill persons having negative subjective experiences of healthcare, such that they might come to associate hospitals not only with sickness and suffering, but also with confusion and isolation.

The second feature of these epistemic complaints is that they are systematic and longstanding features of healthcare systems, rather than isolated or incidental cases of communicative failure in otherwise epistemically harmonious systems. An abundant body of empirical evidence indicates that the epistemic complaints described are not anomalous but rather indicators of serious and persistent problems that arguably arise from contingent structural features of contemporary healthcare practice, but which could be addressed through systematic reform. In the late 1960s and early 1970s, pae- diatrician Barbara M. Korsch published an influential series of papers identifying ‘gaps in doctor-patient communication’. Based on interviews with patients, she identified the causes of these ‘gaps’ being the ‘coldness’ associated with impersonal diagnostic procedures, doctors’ perceived indifference to or ignorance of the concerns of their patients, and a disorientating use of medical jargon.3

Korsch’s work was followed by further studies of the personal and social experiences of ill persons, by authors such as Arthur Kleinman and S. Kay Toombs, and has also inspired recent work in phenomenological pathography.4 Such concerns have also directly informed subsequent legislative changes to healthcare policy, such as the NHS Patient Charter and the NHS constitution in the UK.5 But despite this greater aware- ness, patients continue to voice epistemic concerns, most obviously through the vast body of pathographic literature – including online patient fora, blogs, and narratives – which consistently attest to persistent experiences of feeling ignored, marginalized, or epistemically excluded by health professionals.6 The UK Patients’ Association, for instance, lists complaints about communication between patients and health profes- sionals as a frequent complaint received by the association.7 Although much of this lit- erature focuses upon the emotional distress that such negative experiences generate,

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we think that they are grounded in an epistemic dimension that has not, until now, been fully identified.

Contemporary commentators have connected these epistemic complaints with their fears about a wider ‘crisis’ in modern medicine and to related calls for a ‘humanistic turn’ in medical care.8 Often the crisis and the calls for reform play upon and invoke distinctively epistemological concerns about the capacity of physicians to initiate and sustain rich testimonial and hermeneutical relationships with patients. Indeed, many medical policymakers have begun to issue calls for a restructuring of medical training and practice whose explicit aim is to ameliorate the communicative problems that arise between patients and physicians.9

In 2012, Darrell G. Kirch, the president of the Association of American Medical Colleges, announced an ambitious reform of the Medical Career Aptitude Tests (MCAT). From 2015, American medical students are required to study ethics, philos- ophy, and cultural studies so that they can cultivate and refine their capacities to understand and engage with the concerns and experiences of their patients. As Kirch writes, ‘being a good physician is about more than scientific knowledge’, for it involves ‘understanding people’, thereby requiring that doctors have ‘communication skills, and an ability to interact with people with empathy [and] integrity’ – a clear testimony to the need to respond to the epistemic complaints noted above.10 It is therefore clear that the two sets of epistemic problems we identified reflect systematic features of modern healthcare that are of significant concern to patients, practitioners, and policy- makers.

Other recent developments in attitudes to healthcare, mainly in the United States and United Kingdom, such as the growth of ‘narrative medicine’, are also inter- pretable as responses to those epistemic problems; however, typically the epistemologi- cal issues that generate the problems are neither recognised nor addressed. An example is the increasing emphasis placed upon ‘communication skills’ that doctors ought to exercise, which tend to focus on superficial modifications of physical beha- viour – such as adopting an open posture and making eye contact. Such measures arguably fail to identify and challenge the deeper epistemic inequalities that charac- terise the relationship between patients and physicians. The use of reductive and sim- plistic questionnaires to glean information about ‘patient satisfaction’ is another such example, in which opinions are sought, but only in a confined and predefined form that is sensitive only to measurable and schematised variables of patient experience.

Although such skills, initiatives, and policies should be welcomed as efforts to repair the epistemic relationship between patients and physicians, they tend to rely upon highly contestable epistemological presuppositions. For instance, they tend to neglect the fact that those relationships are usually characterised by epistemic inequality and asymmetric power relations in a way that upsets comfortable hopes about the efficacy of superficial behavioural changes by physicians. Being physically or mentally unwell, dependent on others for pain relief, bedbound, or incontinent – all of these place the patient in a position of vulnerability and dependence which erodes their social and epistemic confidence and capacities.11 We claim that concerns about patient-physician relationship, the efficacy of medical care, and public trust in medicine can be usefully reframed in terms of fundamental epistemological problems. If so, one should expect epistemology to play an essential role in the diagnosis and treatment of these problems.

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The aim of this article is therefore to provide an epistemological analysis of these problems using Miranda Fricker’s notion of ‘epistemic injustice’.12 We make two claims, the first being that chronically ill persons are especially vulnerable to epistemic injustice, owing to prevalent negative stereotypes of illness and certain structural fea- tures of contemporary healthcare practice.

The second claim is that the concept of epistemic injustice can therefore help to explain, at least to some degree, patients’ complaints about their healthcare experi- ences. Since ill persons already encounter a range of difficulties, offering new explana- tory and ameliorative resources is an essential task, and one to which applied epistemology can contribute.

In addition, there are particular constraints that restrict patients’ ability to describe their illness experience, and hence to provide their own account of the clinical encounter. These will be discussed below as a form of hermeneutical injustice, and we have also discussed them elsewhere.13 Although this is not the focus of this article, we note that the two phenomena – epistemic injustice and communicative constraints – intersect in significant ways in the case of illness.

Before beginning the analysis two caveats are needed. First, our claim is not that ill persons are always epistemically reliable, for that is clearly not the case. Certain cases of illness – such as certain brain injuries, dementia, and psychosis – result in severe cognitive impairment that will necessarily erode a person’s epistemic reliability. Our claim is that judgments about the epistemic credibility of ill persons are too often prej- udicial and generated and sustained by negative stereotypes and structural features of healthcare practice. Many patients will not be as well placed as their doctors to under- stand certain aspects of their illness and treatment, but this neither requires nor justi- fies the further attribution to those patients of inferior epistemic status tout court.

Second, our focus in this article will primarily be on the chronically ill, and so our references to ‘the ill’ should be understood as referring to the fairly stable social group of persons with chronic somatic illnesses and their associated stigma. Our aim here is to secure the claim that this specific sub-group of ill persons can and does suffer epis- temic injustice. We leave questions about specific and complex cases – for example, about how our analysis might apply to mental illness, patients who are children, and acute illness – for further work.14

2. Epistemic Injustice, Prejudice and Stereotypes

The concept of ‘epistemic injustice’ was introduced by Miranda Fricker to refer to forms of injustice that are ‘a wrong done to someone specifically in their capacity as a knower’.15 Since the social and epistemic practices of giving information to others and interpreting our experiences is integral to our rationality, identity, agency and dignity, it is evident that injustice which harms our testimonial and hermeneutical capacities will be a source of deep harm. In her book, Fricker focuses on epistemic injustices that arise from cases of racial and sexual stereotyping and prejudice, such as cases where a speaker’s testimony is accorded a lower degree of credibility owing to their being black or a woman, than they would if hearing the testimonies of a white male. Fricker goes on to claim that the damage resulting from epistemic injustice impacts upon a person’s life as a whole, and so ramifies with more familiar forms of social injustice. If so,

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epistemic injustice is integrally related to social injustice.16 We suggest that there are distinctive features of the social group of ill persons that render them vulnerable to similar forms of negative prejudices and stereotypes, such that Fricker’s account of epistemic injustice can also be applied to them.

There are several varieties of epistemic injustice, but for reasons of space and focus, our analysis focuses on the two identified by Fricker, namely testimonial injustice and hermeneutical injustice, which arise in the context of our testimonial and hermeneutical practices. We also discuss two specific forms of testimonial injustice, which Christo- pher Hookway dubs participatory prejudice and informational prejudice, each of which involve a person or group facing obstacles to their participation in collective epistemic activities.17 The relationship of these two prejudices to testimonial injustice is a matter of debate among virtue epistemologists, with Fricker herself arguing that testimonial injustice is ‘the most basic’ form of epistemic injustice, of which the two prejudices identified as Hookway are specifications.18 We agree, so the article starts with testimo- nial injustice, moves onto the two prejudices, before turning to hermeneutical injus- tice. In each case, we ask whether ill persons are especially vulnerable to that type of injustice, and if so, identify the stereotypes, structures, and practices that generate and sustain it.

Illness often leads to incapacitation, anxiety, and insecurity; these can either be met with empathy and compassion, or may trigger negative stereotyping. Instead of making an empirically and reflectively robust judgment on a case-by-case basis of the epis- temic credibility of an ill person, health professionals (and others) may tacitly fall back upon such uncritically (and often unconsciously) adopted stereotypes, many of which incorporate negative epistemic prejudices.

Fricker emphasises that such stereotypes and prejudices typically operate ‘without any focused awareness’ and are ‘(typically) culpably resistant to the evidence’, and thus irrational.19 Many prevailing stereotypes of ill persons tend to connote incapacita- tion, disability, diminished agency, social vulnerability, psychological fragility, and bodily failure, among others.20 These stereotypes often portray illness in terms of moral or conative failure or social defect that may ‘contaminate its surroundings’21

and range from moralistic forms through to the ‘punitive and sentimental’ types described by Susan Sontag.22 A broad theme of these stereotypes is, as Arthur Frank remarks, that ‘the power of stigma has fed on seeing the body’s condition as an expression of morality’,23 such that the fact of illness is a mark of moral, social, and epistemic failure.

The structures of healthcare institutions are underpinned by biomedical approaches that focus upon the biological rather than existential aspects of illness, and therefore lower the level of attention paid to the subjective experience of being ill. Healthcare provision is based upon principles of efficiency (and in some cases financial profit) and designed to suit the needs of health specialists rather than patients. In addition, time pressure, short consultations, and use of standardised protocols that leave little room for personal needs and values, are also core features of modern healthcare systems.

Finally, work is task-based rather than patient-focused, thereby closing down oppor- tunities for establishing sustained contact between a particular health professional and an individual patient, and for the rich forms of communicative relationship that might facilitate the recognition and cultivation of patients’ ability to contribute to the

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epistemic aspects of their care. As we argue below, all of these can contribute in a myriad of ways to the gradual erosion of the epistemic confidence and capacities of the ill person.

3. Testimonial Injustice

Testimonial injustice occurs when prejudice causes a hearer to give a deflated level of credibility to the speakers’ word.24 Specifically, a negative stereotype introduces preju- dices that cause a credibility deficit with the consequence that a person’s capacity to act as a testifier – a reliable giver of information – is impaired, or in severe cases com- pletely destroyed. Fricker emphasises that stereotypes and prejudices are neutral, partly because they can be benign and sometimes advantageous, and partly because they serve an essential pragmatic cognitive and social role. The concern about testimonial injustice arises when a person or group are subjected to a ‘negative identity-prejudicial stereotype’ which involves a disparaging association between a social group and one or more attributes, and is closely connected to ethically objectionable investment such as disdain for the relevant social group.25

A typical case of testimonial injustice could involve negative stereotypes of a particu- lar race or gender as suffering inferior cognitive capacity and a presumed predilection for deception, such that their epistemic credibility is automatically downgraded. Such injustices can be incidental, if the stereotype is weak or the prejudices susceptible to challenge, or they can be systematic, especially if, as in the case of racism and sexism, the stereotypes and prejudices are deeply entrenched in the social world. In the latter case, the social group may suffer a ‘tracker prejudice’, as the prejudices imposed by the negative stereotype tracks them through different domains of the social world.26

A person or social group suffers from testimonial injustice when a negative identity- prejudicial stereotype lowers their credibility in one of two ways. The first is that the person or group suffers a loss of testimonial authority owing to a credibility deficit, especially in relation to other socially and epistemically dominant groups who might enjoy a corresponding credibility excess. The second is that the person or group will gradually lose their epistemic confidence as they endure the constant erosion of their credibility, which may, with time and repetition, crush their confidence in their epis- temic capacities. A person or group suffering from such a situation will not expect what they say to be heard, and in time might not speak at all, as the constant assault upon their testimonial practices gradually undermines their epistemic and social confidence.27

The question is whether ill persons are especially vulnerable to testimonial injustice as Fricker describes it; our answer is that they are. For ill persons are often subjected to one or more of a range of negative stereotypes, which, though diverse, often include attributions which tend to undermine their epistemic competence and capacities. These include the stereotypical description of ill persons as cognitively impaired or emotionally compromised, owing either to their somatic condition or their psychologi- cal reactions to it (mutatis mutandis for psychiatric illness); or as existentially unstable, gripped by anxieties about mortality and morbidity such that they ‘cannot think straight’; or that they will be psychologically dominated by their illness in a way that

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warps their capacity to accurately describe and report their experiences (e.g. ‘the moa- ner’ or ‘the drama queen’ stereotype).

Such negative stereotypes will therefore tend to prejudicially deprive ill persons of the prerequisites of reliable epistemic conduct, such as cognitive capacity and psycho- logical stability, and also attribute to them characteristics – like intensified emotionality – that are usually (and contentiously) supposed to be opposed to rationality and relia- bility.28 The consequence of this negative stereotyping is that patients’ testimonies are unjustly accorded lower degrees of epistemic credibility than they otherwise would. A further consequence is that the testimonies that would ordinarily indicate testimonial reliability are interpreted as irregular or atypical – that one ‘got them on a good day’, say – thereby further skewing the evaluative engagement of those ill persons.

Consider the following account:

I had an abnormal cervical smear, so was sent to the large city teaching hospi- tal for a coloscopy. I changed into the usual ties-up-the-back gown, with the usual vital ties missing, and then went through for the examination. It’s a bit uncomfy but I was ok. Lots of big sighs from the consultant with his head between my legs. Then off he goes, leaving the room. I’m told to follow. So I arrive, naked under a gown which doesn’t do up, slightly damp between the legs and a bit stressed as I have to sit down and I’m worried about leaving a wet patch. He goes on to tell me I need an operation. I hear blah-blah-blah as I’m perching and panicky. And it’s very difficult to think without your pants on. I said nothing.29

More generally one can identify features of contemporary healthcare practice that can encourage and entrench the testimonial injustice that ill persons experience. Working under constant time pressure, routinisation of tasks, and shift work all undermine opportunities to listen at length to what patients say and to create a relationship with them. Excessive formality of medical discourse, even when conversing with patients, and emphasis on professionalization hamper human interaction and may limit ways of listening. Indeed, the deleterious implications of these features have been recognised and discussed in literature on the design and reform of healthcare services, evident for instance in the great emphasis now placed on the solicitation and inclusion of ‘patient perspectives’.30

Yet both formal surveys and anecdotal evidence suggests that patient complaints persist and levels of dissatisfaction remain considerable.31 A constant feature of those complaints is the failure of health professionals to evince desired testimonial sensibili- ties, and their consequently being perceived by patients as cold, impersonal, or dismis- sive. Ill persons are therefore demonstrably vulnerable to testimonial injustice because entrenched features of the social and medical world incorporate a variety of negative stereotypes of ill persons that sustain prejudices that impose credibility deficits.

If ill persons are vulnerable to testimonial injustice, as we argue, there is still the question of the nature of the primary epistemic harm they suffer. Fricker characterises that harm in terms of objectification, but more recently Gaile Pohlhaus has suggested that it is more fully understood in terms of truncated subjectivity.32 Pohlhaus argued that the ‘primary harm of testimonial injustice’ should be defined as ‘being relegated to the role of epistemic other, being treated as though the range of one’s subject capacities is merely derivative of another’s’. More fully,

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. . .unlike a