Individuals experiencing acute psychosis in inpatient psychiatric settings face unique challenges. Consider the case of Jake, a student who is struggling between familial conflicts and economic difficulties, as well as choices related to his life career. Auditory hallucinations may take the form of “voices” that comment on his everyday actions, and may lead Jake to think that people spy on him with malevolent intent. These symptoms can lead to angst and withdrawal from social activities, possibly culminating into severe anxiety and agitation.
Wednesday 31 July 2024
Demoralisation and testimonial injustice in an acute psychiatric ward
Wednesday 24 July 2024
EPIC Seminar Series
Our first talk back in March was by Professor Miranda Fricker, whose 2007 book Epistemic Injustice: Ethics and the Power of Knowing catalysed the field we now know as Epistemic Injustice.
Fricker spoke to us about epistemic injustice through the lens of the memoir of mental ill-health written by the British actor David Harewood, Maybe I Don’t Belong Here: A Memoir of Race, Identity, Breakdown and Recovery (2021). His personal story explores how experiences of racism, growing up in Britain in the seventies and as a young man in the eighties, sowed the seeds of personal fracture and psychological disconnect that later expressed themselves in psychosis.
Fricker argued that many psychiatrists and therapists see their own work as including the amelioration of precisely these forms of epistemic injustice: aiming to create a therapeutic relationship in which credibility is not withheld, and shared intelligibility of experience is cultivated, with the result that the service-user may come to express themselves without needing to truncate or restyle what they want to say.
Lauren Freeman |
Wednesday 17 July 2024
When patients hold back: Tactical choices and epistemic agency
Relationships between healthcare professionals and patients often involve an imbalance of power. Medical professionals are very often the gatekeepers of diagnosis, treatments and other support services. Patients on the other hand, typically lack the institutional markers of authority that come with medical qualifications and position. We’ve seen how epistemic injustices can occur in these settings as a result of the biases and prejudices of medical professionals who fail to appropriately recognise the reliability of their patients as sources of information or structural defects of healthcare systems.
I’m interested in exploring the ways in which patients might respond. How do those seeking diagnosis or treatment navigate tricky relationships with medical professionals? What epistemic strategies do patients develop? What forms can epistemic resistance take? One approach that is taken by some patients is a tactical one – being careful about what information they share and how they share it. U.S. based researcher Ann Neville-Jan describes her own relationships with doctors and other medical professionals in her long and often demoralising search for an explanation for her chronic pain and effective pain relief.
Like many who experience chronic pain, Neville-Jan found herself fighting against the view that her pain was ‘just in her head’ – a perspective not uncommon amongst healthcare professionals who view patients with chronic pain as being unreliable in their understanding of the extent and cause of their own pain. As a researcher herself, Neville-Jan was able to play an active role in investigating her condition, leading to a breakthrough: she came across reports of the effectiveness of the use of the drug Paxil for pain relief. The treatment was effective and also provided an insight into the cause of her pain: a ‘hardwiring’ of pain signals in the brain, similar to phantom limb pain.
Whilst she was successful in finding effective pain relief, Neville-Jan still had to navigate encounters with healthcare professionals. Given the prevailing “just in your head” attitude, Neville-Jan reasoned that if she shared the information regarding her treatment, healthcare professionals would be likely to appeal to psychosomatic interpretations that better fits their narrative, especially because Paxil could also be used to treat depression. The information that her pain does have a physical cause and is effectively manageable with Paxil may be deemed implausible or even unintelligible to some healthcare professionals. So as a result, she chose to limit what she tells them, holding back the information which she thinks they will be less open to.
This is an example of a practice which feminist philosopher Kristie Dotson calls ‘testimonial smothering’ in which a speaker ‘truncates’ their testimony – withholds certain information, avoids presenting it in a particular way, or doesn’t share it at all – because they believe that their audience will not find it plausible or intelligible. This practice is often the result of bad experiences: attempts to share information where audiences were found to be incredulous or tended to misinterpret or resist the information being shared. Of course, the practice carries with it numerous negative consequences. It restricts what the speaker is able to share and means that they are unable to challenge the misconceptions of their audience. In Neville-Jan’s case it had specific drawbacks – she had important information regarding the cause and treatment of her pain which can help those involved in her care. She had done a significant amount of research and had knowledge about her condition which she was unable to share. In some sense, this limited her agency. Despite all her work in researching treatments, she was not able to fully engage in discussions about her health.
The problem is that holding back on sharing this information can be a sensible tactical choice for someone in Neville-Jan’s position. By presenting only what is viewed as plausible and intelligible, they ensure that they remain seen as a reliable and intelligible source of information in the eyes of medical professionals.
What does this kind of tactical choice tell us about what it means to have agency in the generation of knowledge? Neville-Jan can be seen as being coerced into holding back information because of the power that healthcare professionals have over her access to treatment. But the intentional negotiation of these relationships through her careful choice of words, suggests a resistant form of agency. She is neither a powerless victim of silencing nor wholly free, but she finds a way of having some control over her situation despite the difficult relationships she must navigate with healthcare professionals. She ‘bargains’ with an unjust system by sacrificing one good (being able to share all information about her treatment) for another (being seen as a reliable source of information). Even though it involves testimonial smothering, a practice of silencing, this is an expression of a resistant form of epistemic agency.
Wednesday 10 July 2024
EPIC Women in Philosophy Workshop
At Birmingham, we are lucky to receive funds from the school for Women in Philosophy events, workshops, meetings and other activities. Last Thursday, we held a workshop for Early Career Women in Philosophy who work on epistemic injustice.
We were kicked off by Sally Latham who defended the value of non-narrativity about one's illness experiences. Sally argued that people who do not, or cannot, narrate their illness experiences in a particular way are vulnerable to a variety of epistemic injustices.
We then heard from Eleanor Byrne who spoke about the relationship between epistemic injustices and affective injustices. She discussed the complex intentional structure of our affective lives to shed light on the variety of ways that we can give or deny "uptake" to people's emotions, moods and feelings.
After lunch, Ellie Palafox-Harris then told us about hypervigilance and the psychiatrist. She presented on the absence of trust in patients in psychiatric encounters, and argued that psychiatrists exhibit epistemic hypervigilance which she takes to be persistent unwarranted distrust.
Kathleen Murphy-Hollies then dissolved the so-called trade-off in our interpersonal interactions with others between the desire to receive accurate information and the desire to be kind. Kathleen argued that the way our description of our experience is received by others shapes that very experience, and that we need to feel that others see us as having agency in order for us to have that agency.
Jodie Russell then warned us that pluralism about models is not sufficient to bring about a more feminist psychiatry. In the spirit of Sara Ahmed's Queer Phenomenology, Jodie argued that science should also be 'queered', seeking a more radical 'table-flipping' approach to a plurality of perspectives and epistemic practices in science.
Alice Moneypenny, whose blog will feature next week, spoke to us about testimonial smothering that patients with conditions like chronic pain can be victim to. She argued that being able to navigate and resist being dismissed through tactical adjustment of one's tesitmony illustrates a special form of agency in patients.
Last but certainly not least, Francesca Bellazzi motivated how we make sense of the so-called human right to science. She argued that truth-seeking is related to epistemic justice, and that active engagement with science allows people to resist a variety of epistemic injustices.
Wednesday 3 July 2024
Good Living: the case of dementia
Dementia is an umbrella term used to indicate a variety of conditions characterised by neuronal damage. The most prevalent type of dementia is Alzheimer's disease which accounts for around 62% of all types of dementia followed by vascular dementia, frontotemporal dementia, and Lewy body dementia as the most frequent. Dementia is characterised by a progressive decline in several domains of cognitive abilities such as executive functions, learning and memory, language, perceptual and motor functions, complex attention and social cognition (DSM-5). The duration is up to 12-15 years.
Cognitive decline has an impact on the person’s capacity to retain information and also to recall memories, communicate and understand others and the world around them, and to perform daily activities. The person becomes more and more dependent in managing daily life, thus relying on others to perform simple activities in the advanced stages of dementia. So-called “psychological and behavioural symptoms” such as delusions, hallucinations, anxiety, depression, and agitation represent a challenge for carers, impact the quality of life of people with dementia and their caregivers and constitute the major cause of institutionalisation.
Stigma in dementia
Several needs of people with dementia are unmet. Not only practical needs but also emotional and relational needs. Kitwood (1997) and Sabat and Lee (2011) were among the first researchers who focus on the notions of personhood and selfhood in the context of dementia.
Kitwood addressed the issue of malignant social psychology to describe how people with dementia are approached and treated by others. In his book, he used several terms to describe the approach of carers such as infantilization, intimidation, labelling by the name of the disease, invalidation, banishment, ignoring, mockery, and withholding.
The impact of stigma toward dementia can be considered at different levels: individual and societal, at the level of the family and at the level of healthcare and welfare, in research and policies. At an individual level, stigma can lead to feelings of shame, low self-esteem, a sense of uselessness, withdrawal from social interaction, social isolation, depression and anxiety. People with dementia, challenged by the consequences of cognitive decline, experience several limitations which impact their emotional balance.
At the healthcare and welfare level, the stigmatisation of people with dementia can be observed at different steps across the care pathway. Since these aspects are related to the context, the multifaceted impact will be discussed in detail:
- Diagnosis disclosure - Even if it is a right for people to receive information about their health condition and it is their own decision to share their health information with others, in the case of dementia this right is not fully respected.
- Advance care planning - Professional carers avoid talking about the prognosis of the disease and professionals' prejudice about the capacity of people with dementia to understand and discuss care options makes planning difficult.
- Shared decision making - Lack of involvement of people with dementia in decisions is due to the attitude of others, especially the failure to recognise the person's ability to communicate or express preferences and wishes.
- Behavioral and Psychological Symptoms of Dementia - Perceptions and thoughts (delusions, hallucinations and misperception), mood (anxiety, depression, apathy and emotional lability), behaviour (agitation, wandering, verbal and non-verbal behaviour which can be aggressive or not), sleep and eating changes are considered meaningless symptoms that are challenging and require controlling or restraining the person with dementia. However, they are also an expression of unmet needs, distress, and absence of engagement.
Older people socialising and being active |