Undermining versus Accepting Young People's Experiences

Laura was brought to the emergency department (ED) by ambulance after a pharmaceutical overdose. Earlier in the assessment, she said she visited her General Practitioner earlier in the day seeking mental health support but she didn't feel she got the support she needed. She reported that she later took a pharmaceutical overdose because she felt very suicidal. The practitioner Laura talks to in the ED  recharacterizes Laura’s experience of suicidal ideation as brief and her act as impulsive. 

What happens in such cases?

In a new open access paper (Bergen et al. 2023), a team of academics and young people with lived experience of mental health services analyse conversations in clinical encounters and observe that people's description of their own experiences is often challenged. These episodes where the practitioner either implies that the patient's report is implausible or undermines it with alleged counter-evidence can be understood within the framework of epistemic injustice. The authors write:

"From a philosophical perspective, applying the concept of epistemic injustice to the clinical encounter enables us to conceptualize the attitude of an epistemically privileged party not as a lack of respect or a failure of empathy (which would not be specific enough) but as an act of injustice toward the party who is epistemically subordinate. The injustice amounts to assigning reduced credibility to a patient’s reports, effectively preventing the perspective of the patient from contributing to shared knowledge and decision making. As epistemic injustice concerns knowledge first and foremost, this does not simply tell us that dismissing a person’s perspective due to prejudice is morally objectionable. Rather, it is problematic from an epistemic point of view because the opportunity to gather knowledge that would benefit both parties and society at large is missed."

 

Clara Bergen

In this table from the paper, we can see that several studies have already gathered evidence of this practice of implying implausibility or undermining the patient's report of their experiences, and that the practice can take several forms:

In the case I started with, one of the five cases examined in the paper, young person Laura's reported intention to kill herself is challenged on numerous occasions, via different strategies: 

1. asking questions that anticipate a compromising response ("And I hear you called the ambulance straight away?"); 
2. asking questions that imply implausibility or inconsistency ("So when you called 111 what did you expect them to do?"); 
3. juxtaposing contrasting information ("You called them so that they could get you help"); 
4. implying information that provides evidence of an alternative characterisation ("So would you say that you took the tablets at the spur of the moment?").

As a result of the encounter, the practitioner concludes that Laura took the tables impulsively and suggests that, if Laura feels suicidal again, she should get support from people she knows or call the Samaritans. The involvement of the rapid response team is deemed unnecessary, and Laura is not referred to mental health services.

Rose McCabe

Future research should explore to what extent recharacterization could be minimized through further communication training or unconscious bias training, and to what extent a long-term solution may lie in increasing accessibility of mental health services for people who self-harm and experience suicidal ideation.

Dan Degerman joins EPIC

Excellent news for project EPIC! Dan Degerman, currently a Leverhulme Early Career Fellow, will join EPIC as a Senior Research Fellow based in the Philosophy Department at the University of Bristol. We asked Dan a few questions about current interests and future plans.

Dan Degerman

Hi Dan! What are your main research interests?

Hello! I am interested in issues at the intersection of mental health, emotions, and politics. 

For example, my first monograph, Political Agency and the Medicalisation of Negative Emotions, examined how the growing tendency to talk and think about emotions like anger and fear in terms of mental health problems affects our ability to act politically. It did so through a series of case studies of political movements and events – ranging from the Brexit referendum to the psychiatric service user/survivor movement – in which people’s capacity to participate in public life was called into question.

Since completing the book, I have been focusing on experiences of powerlessness among individuals with mental illness, particularly in terms of how symptoms, diagnoses, and stigma may lead such individuals to speak or be silent. These are, of course, issues that are closely related to epistemic injustice in healthcare as well as my case study on the EPIC project.

Why do you think it is important to study epistemic injustice in healthcare?

Being ill tends to increase our dependence on others, not only family members and healthcare practitioners, but also on, for example, friends, colleagues, and teachers. Over a remarkably short and fruitful period, scholars working on epistemic injustice in healthcare have provided rich insights into how people with ill health can be silenced in the relationships that arise and change through illness. This work has been and continues to be vital to empowering patients and improving healthcare.

However, a worry I have with the growing scholarship on epistemic injustice, in general, is that silence tends to feature in it only as a socially imposed harm and, accordingly, something that should be broken. Such a narrow understanding of silence overlooks the range of meanings and functions of silence for people with ill health, some of which may be restorative or empowering. And, by acting on it carelessly, we risk compounding the epistemic and other harms that such people face.

To realise the practical potential of epistemic injustice as a concept for patients and healthcare practitioners and to ameliorate the harms that this concept highlights, we need a better understanding of silence in ill health and its relationship to epistemic injustice. This is what I will aim to provide in my case study by examining how people with bipolar disorder – who may have a unique and conflicted relationship to silence and speech – experience and use silence in their lives.

What are you working on right now?

I’m working on a series of papers that will inform the conceptual framework of my case study. The first sets out an epistemic case for recognising a substantive political right to silence.

American crime shows might mislead us into thinking that this right is already legally protected. The phrase ‘You have the right to remain silent’ is probably among the most famous in the English language. In the UK – where what we do not say can be used against us in court – we do not have that right. However, even if we did, a right to remain silent in criminal contexts is too circumscribed to provide the protection that we need for our silence in a democracy.

A political right to silence must be able to protect our ability to be silent across various contexts because there are often good epistemic reasons for us not to speak. For example, we might feel pressured to lie if we speak, or we might know that what we say will be misunderstood or misused by others. In such circumstances, silence might be the best option. But, in a society like ours where silence is frequently denigrated, it may seem an untenable one.

I think this right could have important implications for people with ill health, who can, for example, be subject to pressure to disclose their illness at their place of work or education.

I’m looking forward to developing this and other ideas over the next few years in the context of the EPIC project.