Explanations for functional somatic symptoms across European treatment settings: A mixed methods study 2023 Saunders, Burton et al

Highlights

• We describe 5 main explanatory models for functional somatic symptoms.
• Models are used flexibly by healthcare professionals to explain a range of symptoms.
• They are used widely in patient education in treatment setting across in Europe.
• The approaches described can engage patients in Bio-Psycho-Social treatments.
• Together they form the foundations for a curriculum of medical explanation.

Abstract

Objective
Engaging patients in treatment for functional somatic symptoms (FSS) relies on a shared understanding of the mechanisms underlying the complaints. Despite this, little is known about the explanatory models used in daily clinical practice. We aim to examine the approaches healthcare professionals use to explain FSS across European healthcare settings.

Methods
This is an exploratory mixed methods study, combining sequential qualitative and quantitative analyses. 3 types of data were collected: a survey of Health-Care Professionals (HCPs) with special interest in FSS from 16 European countries (n = 186), Patient Education Material collected systematically from survey respondents (n = 72) and semi-structured Interviews with HCPs (n = 14). Survey results are summarized descriptively. Qualitative data was thematically coded following template analysis methods. Findings were integrated through mixed-methods triangulation.

Results
Five main explanatory models for FSS that are used across treatment settings and diagnostic constructs were represented in the data. The ‘Multisystem Stress’ Approach explains FSS through physiological stress responses within a bio-psycho-social paradigm. ‘Sensitized Alarm’ and ‘Malfunctioning software’ are both approaches derived from the neurosciences. Explanations related to ‘Embodied Experience’ are often used within integrated psychosomatic therapies. In the person-centred ‘Symptoms’ approach, HCPs aim for co-constructed, individualized explanations. These approaches, which rely on different models of mind-body-environment are complementary and are used flexibly by skilled HCPs.

Conclusion
Taken together the explanatory models described might form the basis of a curriculum of medical explanation with the potential to equip clinicians to form more collaborative relationships with patients across healthcare.

Open access, https://www.sciencedirect.com/science/article/pii/S0022399923000107

 

[Note: PEM here refers to "Patient Education Material"]

3.2. Terminology

The most common terms used in patient education by survey respondents were Functional (71% of respondents), followed by specific syndrome names (Fibromyalgia 68%, Irritable Bowel Syndrome 64%, Chronic Fatigue Syndrome 56%). Terms that implied a particular aetiology such as Dissociative (38%), Stress Related (48%), Somatoform Disorder (19%) and Myalgic Encephalitis (19%) were used less frequently. 41% of HCPs spoke with patients about Persistent Physical Symptoms. 24% used ‘Medically Unexplained Symptoms (MUS)’ or local equivalents such as ‘Somatisch Onvoldoende verklaarde Lichamelijke Klachten’ (SOLK). Some terms had localized acceptability: ‘Psychosomatic’ was used widely in countries where there is a tradition of psychosomatic medicine (e.g. Germany and Latvia) but was uncommon outside of these areas. ‘Bodily Distress’ was regularly used in Denmark but infrequently elsewhere. The most common terms used in the PEM resources were ‘Functional’, ‘Chronic’ (e.g. chronic pain) or the name of a specific syndrome. Fewer PEM referred to MUS/SOLK or used the term ‘Persistent Physical Symptoms’. Psychiatric diagnostic terms are not commonly used, and this was corroborated across data types. Overall, 19% of survey respondents reported using either ‘Somatoform disorder’ or ‘Somatic Symptom Disorder’ in patient education and a further 30% in communication with other professionals. Only 1 PEM mentioned either of these terms. Interviewees confirmed that they did not find these terms helpful in patient education but reserve them for administrative purposes, usually when a referral to psychological therapy is indicated.

The HCPs interviewed all conceptualized the variously termed conditions asked about in the survey as closely related.

“I understand it as the same kind of problem, and I work with them as the same problem.”

Physiotherapist, France
“These chronic conditions are part of same family; we use the same approach.”

Family Doctor, Spain
“I might say ‘you have a lot of functional somatic syndromes, that's really hard for you. We know that these share some similarities, they go along with each other often’….”

Psychologist, Sweden


Many HCPs interviewed stated they tend to use their patient's preferred term, as long as this was not felt to hinder therapeutic potential by implying either non-recoverability or an unrealistic single factor cure. Despite feeling personally comfortable working with a heterogeneity in terminology, it was recognized that multiple terms are confusing and prevent patients feeling reassured and confident in their diagnosis. Variable terminology also affects access to social support and helpful information online.

“I like to ask (patients) ‘What would you tell your family or your boss if they ask you what is your problem?’. And they are very, very uncomfortable with that. They say ‘I don't know, I wouldn't know.’ And that makes the social acceptability very hard.”

Physiotherapist, France

 

Those are stories, narratives. Parables are not explanations, they're just stories, in this case fables. People expect real answers in healthcare, making up narratives never amounts to an explanation, and clearly the target of the explanation is not the patient, the stories are for the professionals. This is literally the old pre-science model. The Humors were also just stories. Everything before scientific medicine was made up of stories, aside from a bit of crude anatomy. And none of it was valid, the only parts of medicine that work are based on science, it's the only method that works.

They know it's just stories. When they say "flexibly", they really mean willy-nilly. The problem is that medicine is OK with making up BS narratives, they see nothing wrong with it, when the entire credibility of medicine is that it is scientific. It's BS in plain sight.

 

This basically says that we discovered that there are five popular ways to bullshit to patients. We recommend teaching these to the students.

I would like to know how someone like Chris Burton, capable of writing this sort of pernicious nonsense, was considered suitable for the NICE committee.

There was a time when I used a lot of benefit of the doubt arguments about people involve in BPS. But over time the appalling quality of the work speaks for itself.

 

An uncomfortable read but it does have the benefit of neatly summarising "what is out there" for the unsuspecting patient.

 

So the skilled medical practitioner should tell the patient whatever unevidenced nonsense they deem best suited to keeping their patient placated, and here are five potentially contradictory random explanations for you to pick from to misinform your patient.

Presumably then the purpose of explaining to the patient the nature of their condition is not to help them understand their condition and manage it more effectively, but rather to stop them asking any further questions. And presumably it is by extension open for the practitioner to invent any other theoretical model they think might be better suited to their patient’s world view, including karma from past lives, demonic possession or electromagnetic radiation.

 

It's no wonder medicine is not making progress with poorly understood illnesses. It is too busy making up BS to mislead patients to hide the fact that the illness is poorly understood. If there was a collective act of admitting this uncomfortable truth, effort would then go into actually solving the problem.

 

Medicine as marketing (of drugs & snake oil) isn't new but I hadn't fully appreciated the extent of medicine as the marketing of models. Multi-level marketing at that. Market the model to doctors so doctors can market it to patients (who, in some cases, market it to further patients). Additional layers may be involved, e.g. market the model to politicians who then market it to health service commissioning agencies who then market it to doctors...

And all they're selling here is 5 ways to avoid admitting (to self & patients) that you don't know.

 

What I find so astounding about this article is that, rather than the authors genuinely if mistakenly believing in a single theoretical approach, they can be so cynically open about their gaslighting of their patients. To make it so clear that their practice is not based of their having been seduced by a specific narrative, but rather their role is to seduce their patients into accepting any narrative that seems to work in placating them.

Presumably this is also seen in the use of the term ‘functional’ that can be formulated also to trick some patients that their underlying biomedical condition is being taken seriously at the same time as the physician holds totally contradictory beliefs about it being psychogenic.

The presenting symptoms here are not something to be understood and managed appropriately rather the patient is an object to be manipulated into quiescence.

 

I honestly can't understand how any aspect of treating patients in this manner can be considered as being remotely ethical.

 

I would be curious to know whether the CFS services in the UK resemble these models? What is exactly happening? Also curious to know what happens in other countries.

 

Further to my point, I note that a certain Professor Edwards in expert testimony to NICE, said:

Not telling patients that these explanations for their illness (eg, "physiological stress responses", ‘Sensitized Alarm’, ‘Malfunctioning software’‘) are highly speculative would seem then to be unethical to me.

If any more doctors tell me that my illness is "all in your head" or caused by "anxiety", "past life trauma" or "deconditioning" etc, I have decided that I will report them to medical authorities on the basis that there's no proof to back these claims and that not informing me of this is unethical.

 

Collaborative!…no, this is a form of coercion using outdated psychoanalytical and psychosomatic theories, BPS and pseudoscience. It removes people’s ability to have informed consent on so many levels. Highly unethical. Driven by health economics, culture and politics.

 

Right. The kind of collaborative relationship where the patient must accept and commit (aka ACT), must subscribe to their views of psychosomatic belief and must engage in active educative therapies to truly "believe".

 

I have actually read the following* in a clinical letter. This was the terminal statement after zero improvement, despite confirming patient adherence to all advice and management strategies previously given under the FND framework.

This has become cult-like pseudoscience. (It may also be regarded as a little ironic that with Edinburgh as an academic centre of FND, here we are with a no true Scotsman fallacy.)

*I have significantly reformatted this to make it unrecognisable, but I am confident you would agree this is perfectly equivalent to the original.

 

The ‘no true Scotsman’ fallacy:

 

Yes, to me it is like conversion therapy. And I have a reasonable knowledge of ACT for mental health disorders (not the ones mentioned in this document).

It will be interesting to see how the Embodied theory from Europe plays out in NZ, we have no ME/CFS clinics just a hodge-podge of gullible GP’s, strong psychosomatic stalwarts in some NZ universities, Australasian Psychiatry not calling any of this BPS stuff out publicly…..There is a bigger freight train of BS coming our way and there is plenty here now…