Factor #7: Lack of medical epistemic humility (and lack of reflexivity)
Epistemic humility is a form of epistemic justice that encourages an individual to be epistemically humble, that is, to recognise the limitations of their knowledge. In medicine (and more broadly in science) this involves acknowledging that knowledge is socially situated and provisional, that complete objectivity is not possible, and that clinical decisions usually involve a degree of uncertainty. Such humility is particularly important when working with patients with medically unexplained symptoms (MUS) or illnesses which are difficult to medically manage.
This does not mean relinquishing claim to medical expertise earned through many years of training; however, it does involve recognising that there are limits to that expertise and that patients can often help to fill the knowledge gap.
Medical epistemic humility may be fostered by reflexivity, the ability of an individual or system to think critically about itself. In healthcare, this would involve practitioners being able to reflect on the limitations of their models (see previous blogs factor 1 – factor 5) and the potential consequences this has for certain patient groups. It would also encourage practitioners to reflect upon personal prejudice.
Neither reflexivity nor epistemic humility attract a huge amount of emphasis during medical training; at least, not beyond ‘self-reflective’ activities which tend to be individualistic in nature and not infrequently tokenistic. Although medical paternalism is allegedly a thing of the past, there is still plenty of hubris to be found in theory and practice around medically unexplained and difficult to manage illnesses.
One of the clearest examples of lack of medical epistemic humility can be found in the way medically unexplained symptoms are defined in research literature and practice. MUS are not infrequently described as symptoms ‘in the absence of physical pathology’. More recently there has been a move amongst biopsychosocial proponents to advocate the term ‘illness without disease’, whereby illness is defined as the (psychologically perpetuated) subjective experience of symptoms whilst disease is understood as objective pathology. How do we know there is an absence of physical pathology in so-called MUS? The short answer is that we don’t.
We don’t know because there are still many things beyond the reach of science and technology and it may simply be that the pathology exists but is not detectable or understood. In other words, absence of evidence does not equate to evidence of absence. We also don’t know because some patients with medically unexplained symptoms (I suspect particularly patients with multiple marginalised identities) are refused any kind of investigation, even when these are clinically indicated. In a previous blog in this series I noted that people with lower socioeconomic status, people from racial and ethnic minority backgrounds and women are more readily psychologised and dismissed in healthcare. In my experience, this dismissal extends to refusal to investigate symptoms.
Yet, this belief that no pathology exists in MUS is often taken as an irrefutable truth, and is a strong theme throughout biopsychosocial literature. I often wonder how many medically unexplained symptoms would actually transpire to be medically explained if patients were investigated appropriately and if healthcare professionals were adequately trained in biomedical understanding (as opposed to biopsychosocial understanding) of certain illnesses.
Another important reason for the medical profession and health services to develop reflexivity and epistemic humility is that, as mentioned above, knowledge is socially situated. This essentially means that knowledge is a product of the sociocultural, political and historical context in which it is embedded. Science and medicine reflect the assumptions and ‘values’ of their principal producers, who have historically been embedded in a white, male, middle-class, cisgender, straight and able-bodied habitus. This means that healthcare has unconsciously adopted these assumptions too. Becoming aware of such assumptions and how they foster structural discrimination and barriers towards minority and marginalised groups is crucial if the NHS is to ensure that it’s ethos of ‘every patient counts’ really translates into reality.
It may be that Long Covid will force healthcare into becoming more self-reflective and epistemically humble; there are already signs that the medical profession is realising how little it knows about post-infectious disability. The tragic irony is that, if greater emphasis had been placed on reflexivity and epistemic humility in previous decades, the medical profession and NHS more broadly would have been better equipped to care for Long Covid patients. Decades of incalculable suffering of people with post-infectious illnesses such as ME/CFS and chronic Lyme would also have been prevented.
One final reason for adopting a reflexive stance in science and healthcare is that researchers and clinicians are motivated by many factors and in some cases (I’d like to think a minority of cases) their conscious or unconscious motivations are not necessarily in the best interests of the patients they purport to serve. Financial and political motivations sometimes take precedence over patients, as we will see in the next and final blogpost to this series.