On epistemic injustice, clinical documentation and why nobody hears you when you’re mad.
By Hattie Porter
Sometimes, I think I could shout at the top of my lungs and I still wouldn’t be heard. Sometimes, I think I must speak at the same decibel as silence. So often my words are not listened to – if my voice is even heard in the first place. Over time, the experience of being silenced, disbelieved and unheard erodes a person’s confidence in their own knowledge and the importance of their voice. Worn down from the frustration of trying to be heard, often it is preferable to remain silent.
With a particular focus on clinical documentation, this essay will consider my personal experiences of not being heard as a mad person, employing philosophical concepts to further understand the complex interactions between power, identity and voice.
Epistemology is the branch of philosophy concerned with how knowledge is created and shared. Knowledge shapes our understanding of the world and how we communicate our experiences within it. We each possess knowledge of our individual narrative which we share with those around us through telling our stories. Yet we have all had experiences where, despite knowing the truth of our words, we were not believed.
Epistemic injustice is a unique form of injustice where the subject’s own knowledge is denied, dismissed or unheard (Fricker, 2007). Due to prejudiced assumptions and unconscious bias, the speaker’s word is viewed as being unreliable and is given a deflated level of credibility: their story is not believed. Key examples of this would be the victim of abuse whose accounts are disbelieved when reported; the transgender person who comes out to their family to be met with remarks that “it’s just a phase”; the patient with chronic pain, fighting for doctors to take them seriously.
This injustice is systemic and underpins the oppression of marginalised groups, tracking them through all aspects of life. Through the epistemic means of silencing individuals based on a marginalised identity, these groups remain stigmatised and stripped of power. Not only does this prevent us from sharing our own testimonies but prevents the formulation of our collective stories and shared understanding of our experiences as a community. If we cannot tell our story, we also cannot hear the stories of other members of the marginalised communities we belong to. This historical exclusion and barriers to establishing collective narratives and resources is called hermeneutical injustice.
These experiences are further compounded by the intersection of identities and interactions within the wider climate of societal injustices.
As psychiatric patients, we are so often disbelieved or not listened to in the first place. Our accounts of poor treatment and trauma are dismissed as an overreaction; we reach out for help only to be deemed attention seeking; even our interpretation of the world is pathologised and declared as symptomatic of our madness.
Carel and Kidd (2014) identified that within healthcare settings, ill people are at great risk of epistemic injustice due to the perceived impact illness has on functioning as well as the power dynamics within a patient-clinician interaction. It may be viewed that the illness itself prevents the patient from giving reliable information due its impact on cognitive, emotional and existential functioning. While a patient who is in distress, for example during a mental health crisis, may be viewed as too hysterical to provide clear information. Additionally other parts of the patient’s identity including race, gender, sexuality and social class may further influence a clinician’s judgement of the person due to further unconscious bias, discrimination and the intersection of inequalities.
Furthermore, healthcare professionals are viewed as having epistemic superiority – believing their medical training and qualifications equip them with knowledge far beyond the patient’s understanding. Subsequently, the judgement of the clinician is given greater weight than the patient’s testimony. This is symptomatic of a healthcare system which is underpinned by a biomedical model of physical illness and mental distress rather than the existential experiences of the patient. By considering objective symptoms as more relevant than lived experiences, the patient’s knowledge and voice is drowned out. Patients are the objects of healthcare, rather than participants in it – even in the services which purport to be patient centred.
Within healthcare interactions power is heavily imbalanced placing the ill person in a vulnerable position. Patients are dependent on the clinician for any potentially lifesaving treatments; referrals to secondary care services; or letters to enable access to benefits. Indeed, the doctor may have powers to impose treatments against the patient’s will. In order to access the treatment needed, the patient needs to be heard and believed by the doctor; it means nothing to know what you need for yourself. As such, decisions are not made on the word of the patient, but on the clinician’s assessment. Sometimes these will be in alignment, in supportive encounters where decisions are collaborative. But ultimately it is the clinician’s word that will be documented in medical records following the encounter. The doctor will write the patient’s story.
Therefore, two stories are created of a healthcare interaction: the experience of the patient and the events as recorded by the clinician. Sometimes these testimonies are aligned, but other times may be entirely discordant. These clinical documents follow a patient around, remaining stored for years after their death. As a healthcare professional I understand the importance of good record keeping, for ensuring patient safety and quality of care. As the adage goes “if it is not documented, it didn’t happen”. Yet it is easy for note entries to be misunderstood, lost in translation as information is passed between clinicians, read and repeated slightly differently each time. Entries written in haste may not read as intended and unconscious biases taint the picture created. This diminishes the reliability of these documents, yet so often the credibility of notes is not questioned.
Some years ago, during a mental health act assessment, a psychiatrist questioned me on the details of an overdose I had taken a few days prior. She asked me how many tablets I had taken and frowned at my response. She corrected me, stating matter-of-factly that it had been an entirely different figure.
I felt an overwhelming sense of embarrassment and self-doubt. Despite being the only person present during this event and therefore the only person who could possess the knowledge of what happened, my testimony was discounted. Yet a different number was gathered and recorded in my notes. Where there was a discrepancy between the knowledge I provided and the version of events presented in documentation, it was immediately assumed that my word was unreliable. In a situation where power was so heavily weight against me, my lack of power was presumed to precipitate a lack of knowledge, while my distress and vulnerability rendered my memory as unreliable. Perhaps the nature of my madness lead to the assumption that I may deliberately provide an incorrect account to manipulate the situation. But it didn’t matter what I said, afterall in this encounter I was not the one holding the keys.
More recently, following a period of time off work, I had a telephone assessment with occupational health. I began to share my story but the doctor was disinterested. Cutting me off mid-way through, he explained he wanted to write to my GP to request a medical report. Having never met either of these doctors in person, I was terrified of the idea of a document produced by a stranger detailing intimate details of my life. All the GP would know about me and about my health would be the information detailed in my clinical records. Despite being able and willing to provide this testimony – to know which parts of my medical history remain relevant – my words were considered inferior to clinical notes.
These occurrences are not particularly dramatic, and while upsetting, didn’t cause great harm. But they are not isolated events. They are replicated again and again and echo through each encounter I’ve had. They are emblematic of the deeply-rooted epistemic injustice experienced by mad people, and the entrenchment of the stigma and prejudice we experience in our treatment – often so quiet and ingrained neither patient nor clinician is aware. They represent the underlying assumption that as mad people, we are untrustworthy storytellers and therefore not worth listening to.
As psychiatric patients our clinical records can feel like a weapon. Our stories are rewritten and medicalised, encoded in a language we don’t understand; shared between strangers but hidden from us. Whether it’s diagnostic labels which are incongruent with our knowledge and understanding of our experiences, or events inaccurately portrayed because nobody listened to us long enough to know what really happened. It feels powerless to not have control of your own narrative.
We want to be heard. We want to be listened to. We want to be believed. Patients can be “poor historians”, but clinicians can be poor authors and there is always more than one side to a story.
We want to write our own stories.
This essay was written by Hattie Porter.
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