The need for a standardized conceptual term to describe invalidation of patient symptoms, 2021, Bontempo

I can't access the full text but 6 of the references are to chronic fatigue syndrome papers.

https://journals.sagepub.com/doi/abs/10.1177/13591053211024718

The need for a standardized conceptual term to describe invalidation of patient symptoms

Allyson C Bontempo
First Published June 11, 2021 Review Article
https://doi.org/10.1177/13591053211024718


Article first published online: June 11, 2021

Allyson C
Rutgers University, New Brunswick, NJ, USA

Corresponding Author:

Allyson C Bontempo, Department of Communication, Rutgers University, 4 Huntington Street, New Brunswick, NJ 08901, USA. Email: allyson.bontempo@rutgers.edu

Abstract

In this paper, I comment on a growing literature documenting that many patients perceive their symptoms have been dismissed, ignored, not taken seriously, not believed, etc. (i.e. invalidated) by healthcare providers.

I provide a narrative review of research reporting on this patient-provider phenomenon, invalidation of patient symptoms, in various illness contexts in order to highlight the variability concerning how scholars have been referring to the seemingly same phenomenon.

Next, I discuss the challenges this variability poses for scholarship, including how it precludes the ability to build on our understanding of how it contributes to the patient experience and related health outcomes.

I conclude with recommendations for future research.

Keywords
diagnosis, patient-provider communication, patients, phenomenology, symptoms

 

It's definitely gaslighting. Context and intent don't change what gaslighting is and this is gaslighting in its purest form. Also unprofessional, but 100% gaslighting. It's not perception either, this sets the tone of discussion, it's a basic fact that this is a common thing.

I don't think medicine would ever accept a term that does not whitewash and remove all blame from themselves, so only an informal term can survive in common use. Gaslighting has been in common use for decades, it is well-understood by patients everywhere. And it's accurate, which is nice.

Any other term would be once again medicine by physicians for physicians, which is the cause and reason for all this gaslighting: patients being irrelevant in the entire process, only disease and doctors.

So sadly this is not an exercise that can succeed, there is a strong visceral reaction to any blame assigned to any medical professional, it's rejected on principle, even if the most tame, bland, undescriptive term came to be accepted by medicine, it wouldn't be used by patients to describe it, because it would be an invalid description of what's happening.

In a sense, any other term than gaslighting would just be more gaslighting. The problem is medical culture and the power imbalance that made a few bad apples define the whole bunch, it has to be fixed, it apparently can't from within, and the overwhelming belief that only physicians should ever speak about medical matters just overrules everything anyway, takes the stakeholders out entirely.

It's worth discussing and should be, but it won't lead anywhere as long as medicine is stuck in its paternalistic totalitarian setting, bit like discussing the best voting process while trying to fight an imperial aristocracy that wants nothing with democracy, those in power want nothing to do with this and those without power have no power to change this wretched imbalance.

 

I wondered whether this was the best term, but I'm not sure. Partly because it may not translate culturally and linguistically, and partly because the original meaning was specifically about manipulating someone psychologically into believing that they're insane.

In the case of people with illnesses like ME, the abuser refuses to believe that they're suffering from anything other than a psychological condition – and records this officially, to disbar them from any further investigation, treatment, and financial and social support. Also, the power imbalance is arguably much worse when the abuse is perpetrated by numerous facets of the state, rather than the criminal actions of an individual (from which the state might be entirely willing to rescue the victim).

 

Would it be better to use a phrase that is neutral about the perpetrator’s intent. ‘Gaslighting’ implies the perpetrator is both aware of what they are doing and are intentionally doing it to undermine the ‘victim’?

No doubt in some situations there is both a level of awareness and malicious intent, but in the context of daily medical interactions, some will be knowingly denying the patient experience because they genuinely believe the patient is mistaken and that to deny or disregard the Self-reported symptoms is to act in the patients’ best interests, and others are not even aware that they are denying the patients position either because of literally laziness, just not bothering to listen, or because of intellectual laziness seeing only what they expect to see.

A phrase like ‘denial of the patient experience’, which could be then further qualified as ‘deliberate denial of the patient experience’ versus ‘failure to understand the patient experience’, might in practice be as accurate but avoid prejudging the perpetrator’s intention or motivation.

[sorry cross posted with @Kitty above]

 

This piece seems to me totally unhelpful. @Peter Trewhitt makes some important points but I think the situation is more complex still. I may post more later today.

But essentially this is like a professor of ignoramology saying that meteorologists have too many words for bad weather and that we need one standard word- maybe UGH! What use is that to science?

 

Somewhat relevant here, and Geraghty et al on epistemic injustice is always a "joy" to read.

https://research-information.bris.ac.uk/ws/portalfiles/portal/92570644/CFS_JME_FINAL_Oct_2016.pdf

 

Well, I'm not sure but how about "invalidation of patient symptoms"?

 

As others have said I use gaslighting on the forum -because that's what it is. Usually we are referring to those who really do know better.

When in direct contact with medical professionals then I tend to be more neutral in my language (when my brain is with it enough for me to choose my language).

When it comes to ME I think the majority of doctors genuinely have no clue. They are a small cog in a large machine. They rely on the advice & training their given from system approved sources - so it's relatively easy to colour their opinions. When they refer on, they rely on the next stage of the system to do it's job and don't necessarily see or understand the gaping gaps between the specialities.

Again as others have said a lot comes down to intention. Accusing someone who has the patient's best interest at heart and who has listened to advice from trusted sources within the system of gaslighting can be very counterproductive and simply entrench their views. Using neutral language that is less likely to be seen as a personal criticism, or even attack, is likely to be better received and open their minds to the flaws in the system.

 

I thought this was an interesting observation:

https://en.wikipedia.org/wiki/Epistemic_injustice

It appears that we're still in the process of finding words to describe the "invalidation of patient symptoms" because for a long time this phenomenon had no broader recognition in society. The people who experienced this were probably blamed for it.

We also don't have a good understanding of the phenomenon of "invalidation of patient symptoms".

I think it's more accurate to say it's an invalidation of the patient's capacity for understanding their own illness and interpreting their symptoms.

 

I'd be tempted to drop 'patient' from 'invalidation of patient symptoms' and say simply 'invalidation of symptoms' or, more colloquially, 'failure to take symptoms into account'. Surely 'patient' should be taken as read, as the patient must be the key source of information on symptoms.

 

What's being invalidated is usually not whether the patient is having symptoms, but whether these symptoms are normal or not, and whether they are bad or negligible, and whether they are due to an illness or (somehow, magically) the product of a psychological problem or the patient (very hysterically) confusing ordinary symptoms arising from things like unaccustomed exercise with the symptoms of an illness.

 

What is being invalidated is also the idea that a seemingly healthy person suddenly cannot recover from a usually trivial infection, and that there might be reasons other than physical for them to not recovered as described in the books. Bonus points if you are middle-aged and a woman.

 

A number of ideas race at me, none of which is likely good enough to capture the essence:

Dereliction of humanity
Patient betrayal
Failure to think outside the box
Failure to empathize
Berlin Wall Syndrome, i.e., willingness to shoot innocents to help superiors or State
Douchebaggery
Invalidation of patient symptoms
Medieval assessment capabilities
Shitty at medicine
Meanspirited laziness
Low acumen reservoir
Gaslighting

For me, gaslighting works, but I have a weakness for douchebaggery.

ETA: On a more serious note, and since our symptoms are not just dismissed, but often used against us, symptom impressment

 

I tried to make out what this is really about and am still not very sure. The author is a psychology graduate doing a PhD. The emphasis is on respecting the patient's experience. That may sound fair enough but I would not be surprised if like the Bristol crowd the interest in the patient's narrative of experience is really about legitimising the practice of then interpreting it in terms of childhood trauma or other emotional stuff.

As I have said before, my impression is that when 'academics' talk of 'lived experience' or validating experience they are usually wanting to justify drawing conclusions about what the experience is due to while pretending just to be doing a 'narrative' account. Ignoring people's symptoms on the basis of thinking that they are psychosomatic is a real problem but I suspect that is the business this lady is into.

She seems yo be worried that people who have not had much education cannot describe their symptoms. But if being educated means using words like hermeneutical maybe they are better off!

 

What do you call it when you have a medical condition which has been definitively diagnosed, it has been mentioned in clear terms in a letter from a surgeon, and then, a few years later, when the patient mentions it to a doctor who was uninvolved in the diagnosis that doctor just rolls their eyes at the patient and completely disbelieves them?

The reason for this apparent dismissal is that the condition which has been definitively diagnosed and described has not been included in a summary of the patient's GP records. And this hasn't happened just once, it has happened several times.

This dismissal and lack of recording of the truth also ends up delaying the diagnosis and treatment of another serious condition.

 

The author has suffered medical disbelief herself, hence her interest.

 

It is quite telling that words can be considered biased when using them to explain the stigma, the neglect, the discrimination, and even the abuse of poorly understood, poorly researched diseases and their sufferers.

The discomfort of the medical system when using these words is clear. However ‘stigma’ is acceptable for HIV, poverty and mental illness. Not so much for ME.

With patients being more outspoken, with access to the internet and even in research, it becomes obvious that there is a profound discomfort from the health care professionals and health care systems to hear the truth from patients, using these sharp words. i only wish the very same professionals could simply sit down and listen to the stories instead of pretending it’s not there.