Demoralisation and testimonial injustice in an acute psychiatric ward

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.

The grave societal stigma that is attached to mental illness exacerbates feelings of isolation and diminishes help-seeking. The promotion of patient empowerment is a key component of recovery, and is increasingly seen as a duty of healthcare providers (Larkin and Hutton 2017). People like Jake desire respect and understanding by healthcare providers, need clear and empathetic communication, and want genuine involvement in decision-making (Stovell et al. 2016). Core themes in inpatient treatment are those of powerlessness, quality of care environment, relationship to staff, psychological and physical impact of involuntary treatment, and coercive practices.

Mood and morale

The experience of psychosis in itself and coercive treatment might constitute a “double hit” for the individual’s sense of self-worth, mood, hope, morale. Enhanced insight into one’s mental health is a desirable condition, but can paradoxically lead to adverse outcomes, a phenomenon often referred to as the “insight paradox” (Lysaker, Roe and Yanos 2007, Belvederi Murri et al. 2016). 

This paradox suggests that insight can also lead to increased distress and depression: patients who gain a clear awareness of their psychosis often experience a profound sense of loss and sadness over their perceived decline in personal and social identity. It is particularly evident among people who hold self-stigmatizing beliefs. 

Demoralization may also manifest in patients with chronic psychotic illnesses, but also affective disorders, as loss of hope after a lifetime of struggling with an illness (Grassi et al. 2020) and may be expressed as reduced quality of life. As patients become more cognizant of how they are perceived and treated by others due to their illness, this can exacerbate feelings of hopelessness and low self-worth. However, the effect is tempered by better relationship with the carers. 

On one hand, insight can empower patients, allowing for better self-management and informed decision-making; on the other, it can heighten awareness of stigma, the possible chronicity of their condition, and the impact on their life goals, thereby contributing to depressive symptoms or even suicide (Berardelli et al. 2021). Addressing the insight paradox in treatment planning requires fostering an environment that promotes insight while simultaneously providing robust emotional support and therapeutic interventions to mitigate the distressing impact of such insights. 

Psychosis and epistemic injustice

The concept of epistemic injustice is particularly relevant both for the consequences of psychosis (as a clinical phenomenon) and for the experience of treatment. Individuals with psychosis often find themselves at the intersection of testimonial and hermeneutic injustices, where their capacity to know and communicate their experiences is unfairly discounted due to the nature of the illness and to the internal or external stigmatization of their condition (Smyth 2021, Kidd, Spencer and Carel 2022).

Testimonial injustice may occur when an individual's account of their experiences is disregarded or deemed unreliable, not because of the content of their testimony but because of prejudicial beliefs about their capacity to know (‘identity-prejudicial’ stereotype). For individuals with psychosis, this form of injustice is all too common, as the hallmark symptoms of their condition—delusions and hallucinations—are often dismissed as mere artefacts of their illness, rather than expressions of lived reality. 

Patients with psychosis are judged not to have capacity and are considered completely unreliable in all aspects of their testimony, not just in regard to the content of a particular delusion or hallucination. But psychosis does not necessarily invade all realms of mental functioning and in many instances, patients may hold reliable accounts of a large proportion of their reality and experience. 

The generic, “by default”, dismissal of the whole testimony of people with psychosis not only silences their voices but also impedes their recovery by fostering feelings of isolation, alienation from the healthcare system and society at large (Lysaker and Lysaker 2010). 

It could be argued that a person experiencing psychosis does also risk to commit testimonial injustice on themselves, by judging the self-experience of the world less reliable than it is, and by developing what is called self- or internalized stigma, which is particularly relevant for subsequent loss of self-esteem (Fernández et al. 2023).

Martino Belvederi Murri is Associate Professor in the Department of Neurosciences and Rehabilitation at the University of Ferrara. Martino is also a partner of project EPIC.

EPIC Seminar Series

The Project EPIC team are pleased to announce our seminar series which takes place on the last Monday of each month at 14:00 (UK time). The talks are streamed online and are open to anybody who would like to engage with the project.

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.

 

Miranda Fricker

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. 

You can watch the recording of Miranda's talk here.

Our April talk was by Professor Lauren Freeman, who spoke to us about microaggressions and epistemic harm in medicine. This talk, which you can watch here, drew on her recently published book which has been co-authored with Heather Stewart. Lauren and Heather recently wrote a project blog for us about the aims of their book which you can read here.

 

Lauren Freeman

In May, we were joined by Dr Maru Mormina. Maru spoke to us about epistemic injustice and epistemic responsibility in evidence-informed policymaking and used expert decision-making through the Covid-19 crisis as a case study to show that scientific expertise was selectively mobilised, leading to systemic ignorance which had significant consequences for the development of policy. 

Watch Maru's talk here. 

Maru Mormina

Our final talk for the semester was given by Dr Naomi Kloosterboer on the topic of how to take people with extreme beliefs seriously. Naomi advocated for a kind of epistemic openness which allows us to acknowledge and confront how our own position distorts our understanding of others in various ways. This epistemic openness, she argued, can be useful when thinking about how clinicians should approach apparent extreme beliefs in mental health service users. 

Watch Naomi's talk here. 

Naomi Kloosterboer

Our seminar series will resume online in September, and the details of all of the upcoming talks will be published on our project website under 'events' > 'seminar series'. We are thrilled to first be welcoming Professor Richard Pettigrew, who is based in Bristol. 

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. 

Alice Moneypenny completed her PhD at Nottingham on safe spaces and epistemic practices, before becoming a Teaching Fellow. Her research focuses on epistemic virtues and vices in a non-ideal world, philosophy of education and epistemic agency. 

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. 

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

Good living with dementia

In recent years, there has been a global effort to reframe the vision of care for dementia from a “giving up” approach where, in the absence of treatment people are invited to “give up work, study, and to go home and live the time left” (Swaffer, 2015), to a more balanced approach where the focus is on good care and on promoting quality of life. To achieve this objective, many researchers focus on interventions aimed at enhancing psychological and social well-being. 

Specifically psycho-social interventions are aimed to support people with dementia to adapt and manage their conditions while preserving a sense of self, identity and social participation. Quinn et al. (2022) report key areas of living well identified by people with dementia: being engaged, having an active lifestyle, preserving positive relationships with others, having a good living situation and environment, having security, getting on with life, being able to get out and about, a positive outlook on life, being able to cope, having independence, and having a purpose in life.

Healthcare and welfare systems need to build skills and approaches which are not only focused on meeting basic needs, but also on promoting a more person-centred approach to meet other individual needs such as inclusion, utility, belonging, participation as well as on preserving dignity.

Rabih Chattat is Professor in the Department of Psychology at the University of Bologna. He works on psychosocial interventions in dementia and the clinical psychology of ageing. 

Rabih is also a partner in project EPIC, investigating the epistemic injustice in people with dementia.