EPSO Conference 24 September 2020 - PowerPoint Presentation

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EPSO Conference24 September 2020Professor Havi Carel (with Ian Kidd)University of Bristolhavi.carel@bristol.ac.uk

‘It’s hard to think without your pants on’: patients as knowers

‘No one took the pain seriously’‘I had acute epigastric pain going through to the back during the night but got no relief. It was implied that it was anxiety, and diazepam was prescribed with no effect. It seemed to me that in view of the massive and rapid changes in my body, a physical cause was quite likely. I felt the interest in me had waned and there was less understanding. No one took the pain seriously.’

‘I feel like I’m howling at the moon’‘I feel like I’m howling at the moon no matter how coherent, how rational, how considered my arguments and my explanations for events are, that assumed level of incompetence undermines it because you’re given sub status.’

‘Getting shouted out, getting called a retard, getting called a bastard by staff here. And nothing’s ever done about it. Management just says “oh away you go, you know, you’re imagining things.” But we’re not stupid. We may have mental health problems but we’re definitely not stupid’.

‘It’s very difficult to think without your pants on’“I don't mention problems because though they are real for me, they're minor in the grand scheme of things.”“I had an abnormal cervical smear, so was sent to the large city teaching hospital for a

coloscopy. I changed into the usual ties up the back gown, with the usual vital ties missing, and then went through for the examination. Lots of big sighs from the consultant with his head between my legs. Then off he goes, leaving the room. I'm told to follow. So I arrive, naked under a gown which doesn't do up, slightly damp between the legs and a bit stressed as I have to sit down and I'm worried about leaving a wet patch. He goes on to tell me I need an operation. I hear

blahblahbla

as I'm perching and panicky... And it's very difficult to think without your pants on. I said nothing.”

Epistemic complaints in healthcareTwo broad types:Patient complaintsPhysician complaints

Two features:

Complicate and compromise epistemic relationships

Systematic and entrenched features of healthcare

Aim and claimsAim: provide an epistemological analysis of these complaints using Fricker’s concept of epistemic injustice.Our claims:

These epistemic complaints reflect one or more types of epistemic injustice.

These epistemic injustices arise from negative stereotypes of ill persons and/or structural features of contemporary healthcare practice.

This analysis points to several ameliorative strategies.

Epistemically-toned harmsDisadvantages that occur due to interference with capacities needed to pursue epistemic interests in the context of illnessInjustices intersect with other axes of oppressionThey have cumulative negative effects:Impact on clinical care

Impact on patients’ healthImpact on patients’ social confidence and lived experience

TI occurs when negative stereotypes introduce prejudices which cause a credibility deficit, undermining the testifier.Incidental or systematic‘Tracker prejudices’

The focus of the harm:Loss of testimonial authority

Loss of intellectual confidence

Testimonial injustice

Ill persons and testimonial injusticeThree ways that ill persons can suffer TI:

Derogation: via negative identity-prejudicial stereotype.

Domination

: of ill person by their illness (actual/presumed).

Downgrading

of testimonies that would ordinarily indicate testimonial reliability.

Testimonial injustice: an example‘…you need to imagine what it was like to become so accustomed to the screams of patients that they seemed perfectly natural and normal; so accustomed to them that you could read with interest about nitrous oxide, could go to a fairground and try it out, and never imagine that it might have practical applications’ (David Wootton,

Bad Medicine, 22-3)

Testimonial injustice: an example‘In the 1940s some doctors fell under the misapprehension that curare was a general anaesthetic and they administered it as such for major surgery. The patients were, of course, quiet under the knife … but when the effects of the curare wore off, complained bitterly of having been completely conscious and in excruciating pain.

The doctors did not believe them. (The fact that most of the patients were infants and small children may explain this credibility gap). Eventually a doctor bravely committed to an elaborate test under curare and his detailed confirmation of his subjects’ reports was believed by his colleagues

’ (Daniel Dennett,

Brainstorms

, 209).

Testimonial justiceA testimonially just person is:

Alert to the possibility, or fact, of their vulnerability to EI

Active in scrutinising the credibility judgments they make, and open to calls from others to do so

Active in recognising, soliciting, and including prejudicially downgraded testimonies

Hermeneutical injusticeHI occurs when a gap in collective interpretative resources puts some person or group at a disadvantage when attempting to understand certain of their social experiences leading to hermeneutical marginalisation and social subordination.

Features:

Structural, not agential

Global cognitive disablement, but with differential impact

Two ways that gaps ariseStrategies of silencing:Strategies of exclusion (physical, social, epistemic)

Strategies of expression

Consequences:

Global lack of hermeneutical resources

Marginalisation of non-dominant resources by a dominant group or authority

At no point during her stay in the hospital did any doctor speak to Victoria in a formal attempt to find out what had happened to her, either with or without the assistance of an interpreter.

Ill persons and hermeneutical InjusticeIll persons typically suffer the subordination of non-dominant hermeneutical resources via strategies of exclusion and

expression.

A double injury:

inarticulacy

and

ineffability

.

A self-fulfilling prophecy: the experience of hermeneutic frustration leads to one’s fulfilling the features of the negative stereotype.

Hermeneutical justiceA hermeneutically just person is alert to the possibility, or fact, of…

gaps in hermeneutical resources

their differential impact upon different groups

the possibility of their own hermeneutic advantage

their employment of strategies of exclusion and of expression

group-specific hermeneutical difficulties

…and adjusts their hermeneutical conduct accordingly.

Silencing the sick?Some contemporary healthcare practices and policies encourage epistemic injustice because they privilege certain styles of articulating testimonies, certain forms of evidence, and certain ways of presenting and sharing knowledge.

Such practices and policies tend, in practice, to structurally disable certain testimonial and hermeneutical activities, and to undermine deeper reflection on the norms and presuppositions that shape the epistemic practices and structures of modern healthcare.

We need to pay close attention to the theoretical framework (biomedical, naturalistic) from which practices and policies arise. The naturalistic concept of disease is problematic.

Ameliorative strategies

Applied epistemologyStereotypes of the sick

Phenomenology

Medical humanities

Healthcare reform

Identify aspects of illness occluded or excluded by naturalistic conception

Demonstrate the epistemic and practical significance of those aspects e.g. for clinical care or reflective coping

Identify effective practices for the restoration of the occluded aspects; use conceptual tools (like EI and

phen

toolkit)

Thank you!

Healthcare practice, epistemic injustice, and naturalism, in Harms and Wrongs in Epistemic Practice, RIP Supplements 84 (Cambridge University Press), 211-233, 2018

Epistemic Injustice and Illness (with I. J. Kidd)

Journal of Applied Philosophy

3 (2): 172–190, 2016

Seen but not heard: children and epistemic injustice,

The Lancet

384(9950

): 1256-1257, 2014