Uncertainty and the inconvenient facts of diagnosis, 2021, Jutel

[Andy]

Highlights
• Diagnosis is medicine’s classification tool; it is fundamental in determining treatment and prognosis, in allocating resources, and in legitimising illness.

• Some clinical cases are medically unexplained, and present a problematic situation for a medicine which defines itself by its diagnostic paradigm.

• The contemporary practice of referring to the undiagnosable condition as “diagnostic uncertainty” is a form of epistemic defence.

• Positioning the problem as one of individual cognition rather than with the diagnostic system itself protects the system.

• By shedding light on how groups deal with the failure of their systems and the limitation of their knowledge, we learn more about their paradigms, practices and politics.

Abstract
One common contemporary usage of the term “diagnostic uncertainty” is to refer to cases for which a diagnosis is not, or cannot, be applied to the presenting case. This is a paradoxical usage, as the absence of diagnosis is often as close to a certainty as can be a human judgement. What makes this sociologically interesting is that it represents an “epistemic defence,” or a means of accounting for a failure of medicine’s explanatory system. This system is based on diagnosis, or the classification of individual complaints into recognizable diagnostic categories. Diagnosis is pivotal to medicine’s epistemic setting, for it purports to explain illness via diagnosis, and yet is not always able to do so. This essay reviews this paradoxical use, and juxtaposes it to historical explanations for non-diagnosable illnesses. It demonstrates how representing non-diagnosis as uncertainty protects the epistemic setting by positioning the failure to locate a diagnosis in the individual, rather than in the medical paradigm.

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S0160932721000193

 

[alktipping]

no need for a lengthy paper it is simply doctors covering their backsides for legal and career reasons .

 

[Jonathan Edwards]

This system is based on diagnosis, or the classification of individual complaints into recognizable diagnostic categories. Diagnosis is pivotal to medicine’s epistemic setting, for it purports to explain illness via diagnosis, and yet is not always able to do so.

Only if you are unable, like the author here, to acknowledge that there is uncertainty everywhere and diagnosis is merely a placeholder for understanding what is wrong and what it may bring in the future.

 

[Invisible Woman]

One of the problems with diagnosis is the way the wider world views ill health and disability.

I remember when I was first ill there was an awful lot of BPS guff around about diagnoses validating patients and making them feel better about themselves, despite my discovery that I was the only one who wasn't fussed what it was called. Of course, I didn't understand the politics at the time.

THe Benefits Agency, when they finally permitted me to apply, wanted to know the diagnosis. My employer and their OT wanted to know the diagnosis.

Despite the DWP later developing ESA and claiming it's all about how your illness affects you & not the diagnosis, they've still discounted claimants evidence on the basis that ME doesn't affect people "that way".

Or tribunals have denied payouts to claimants in the basis they haven't undergone GET & CBT as they are treatments for ME, regardless that the claimant has told them they experience PEM.

Even when it's not a two edged sword, somehow we always seem to feel the sharp side (no pun intended).

 

[Arnie Pye]

One thing I have always found astonishing is the inability of most GPs and doctors to accept that they can be wrong. They mostly appear to believe that their diagnostic abilities are perfect.

I've actually had apologies from doctors for mistakes - once in my early teens (my GP actually visited me in hospital! It still amazes me even now so many decades later) and a second time in my mid 30s. The problems I had that prompted the later apology were directly related to the problem I had in my early teens being misdiagnosed for so long.

When I bought my medical records about 6 or 7 years ago I discovered that their apologies were meaningless because the way my conditions were recorded seemed to be intended to mislead and obfuscate rather than inform doctors who might read the records in future.