Epistemic injustice in healthcare: An overview
"[...] I believe that there are areas where injustice is normal, and that the only way to reveal what is involved in epistemic justice (indeed, even to see that there is such a thing as epistemic justice) is by looking at the negative space that is epistemic injustice"
Miranda Fricker (2007). ‘Epistemic Injustice: Power and the ethics of knowing’
The concept of epistemic injustice is something I have been interested in for a few years now. On first chancing upon literature on the subject, it was something of a lightbulb moment for me. Years – decades in fact – of vaguely discerned disempowerment and discrimination suddenly made sense. Epistemic injustice is, in my humble opinion, an excellent foundational framework for marginalised patient and social groups to make sense of their experiences of gaslighting and epistemic oppression. Often, just making sense of something can bring a degree of relief. This, particularly when not being able to make sense of something, or not being able to communicate it to others in a way that they might receive it, is a contributing factor in disempowerment, discrimination and associated harms.
Given that epistemic injustice is a concept that may well pop up in some of my other blogposts, this post provides an overview of the framework, as per the seminal work of philosopher Professor Miranda Fricker.
Epistemic injustice encapsulates the wrong done to an individual or group in their capacity as a ‘knower’ and, according to Fricker’s framework, can be further categorised as testimonial and hermeneutical injustice. Testimonial injustice occurs when an individual’s knowledge and experience is discredited on grounds of negative stereotyping, a process typically predicated upon what Fricker calls ‘negative identity prejudice’ (typically stemming from negatively stereotyped minority group membership).
Whilst testimonial injustice might be argued to operate on an individual (interpersonal) level, hermeneutical injustice can be conceptualised as a structural phenomenon, occurring when socially dominant hermeneutical (explanatory) frameworks fail to capture the knowledge and experiences of a minority group. Applying this to a healthcare scenario, testimonial injustice is at play when, for example, a medical doctor dismisses a patient’s testimony because they are a woman, or a Black person or person of colour, or because they have a stigmatised diagnosis such as ME/CFS - or a combination of these in intersection with other identities that sit unfavourably within the collective social imagination.
Hermeneutical injustice is at play when, for example, a medical doctor (and oftentimes also the patient) cannot make sense of a patient’s narrative because of a ‘conceptual impoverishment’ permeating that narrative. In a ‘medically unexplained symptoms’ (MUS) scenario for example, this might include lack of space afforded to MUS in medical school curricula (beyond understanding it as a psychosocial phenomenon), associated lack of fit with the biomedical model (e.g. no objective markers, difficult to quantify) and short consultation slots that do not accommodate complex illness experiences. Such conceptual impoverishment can then intersect with explanatory gaps within mainstream discourse bound up with gender, race, ethnicity, class, sexuality and so on. This means that epistemic injustice (specifically, hermeneutical injustice) can arise without the conscious or unconscious negative stereotyping of patients by medical doctors. That is to say, epistemic injustice according to Fricker is not always intentional, and is not always agential (enacted by individuals). That said, Fricker’s work has been critiqued by some theorists who have suggested that this stance on epistemic injustice may serve to downplay individual responsibility (i.e. letting certain actors ‘off the hook’) not least because structures and collectives are composed of, and created by, individuals.
There are many insightful papers on epistemic injustice in healthcare: seminal papers looking more broadly at epistemic injustice against ill persons (see here and here); papers focusing on ME/CFS (see here); papers on chronic pain (see here). Although it has been argued that all patients are susceptible to epistemic injustice, patients whose health conditions do not fit dominant hermeneutical frameworks (here, the biomedical model) are surely more susceptible. This can certainly be observed in the way people with ME/CFS have historically been treated by the medical profession, and in the current biopsychosocial backlash against patients following the NICE draft of ME/CFS diagnosis and management. Of course, epistemic injustice might also be used to understand the current predicament of patients with Long Covid and it will likely not be long until published papers appear on this topic.
Epistemic injustice draws from a space at the intersection of epistemology and ethics; additionally, power – namely social power and identity power – features as a strong component in Fricker’s framework. Social power is described by Fricker as “a practically socially situated capacity to control others’ actions” and can be enacted actively or passively by individuals or can operate as a structural phenomenon. Identity power is understood as a form of social power that derives from shared understandings of social identity. In healthcare, medical doctors enjoy considerable social and identity power relative to patients, owing to their training, qualifications, assumed epistemic authority and (frequently but to differing degrees) intersected social advantage. Patients are typically at a large disadvantage epistemically, and often socially, within healthcare encounters, due to negative stereotyping around illness and disability (intersected with other social stereotyping), compacted by structural features within healthcare as previously discussed.
Essentially, for all the talk of patient-centred care and shared decision-making, doctors get the final word in patient care – yet it should be noted that this may be bound by structural factors outside of doctors’ control or even awareness. That said, dominant hermeneutical frameworks (shared meaning-making, mainstream discourse) are both constructed by and reflect the ‘knowledge’ of groups with social power. An example of this is the profoundly ableist biopsychosocial model of disability and chronic illness that has been constructed and reinforced by abled clinicians in collaboration with abled and ableist government officials and health insurance magnates. From this perspective, doctors are far better placed than patients to be able to challenge certain structural factors in healthcare.
In other words, medical doctors and others engaged in research and practice within medicine have some degree of choice as to whether to passively accept features of healthcare (hermeneutic resources) that marginalise certain patient groups, or whether to persistently challenge them. Doctors also have a choice whether to honour patient testimony or not and, at least theoretically speaking, should be able to monitor the biases they bring to healthcare encounters with marginalised patients. Historically, little has been done to support marginalised patient groups; however, now doctors are at risk of being marginalised (to some extent), things are starting to change.
Social power in a pandemic
The prevalence of Long Covid (sheer numbers affected) has meant that many people of considerable social power (notably, medical doctors and academics in health sciences) are now also patients. However, these patients still retain a social and identity power advantage over non-medically or scientifically trained patients, particularly where the latter are multiply marginalised. In reality, of course, it’s not quite so simple, and some doctors have shared their experiences of having the power dynamic turned against them in interactions with consulting doctors in such a way that suggests a considerable loss of social power. (I would be interested to know how many of these doctors hold certain marginalised identities that might render them susceptible to this). That said, it would be very difficult to argue convincingly that doctors with Long Covid have been relegated to non-medic patient status in terms of overall social power.
We might expect that the presence of considerable numbers of medical doctors, scientists and other agents with (relative) social power who have Long Covid would bolster the collective testimonial credibility of Long Covid patients, countering testimonial injustice within this patient group. Given that agents with social power are better placed to influence collective social hermeneutic resources (meaning-making frameworks such as healthcare models, policy and medical discourse), we might also expect a patient group with a significant number of doctors to be better able to generate new hermeneutic resources within healthcare that will accommodate Long Covid. In fact, there have been some promising indications that such shifts are occurring. However, equally if not more socially powerful agents are pushing back to maintain control of the status quo and attempting to extend their ideological (biopsychosocial) reach to encompass Long Covid in a form of epistemic land grab. An epistemic game of thrones has been triggered by a global pandemic.