The social life of diagnosis

DIAGNOSIS is the foundation of medicine, yet it is my assertion that much of its work is social, not clinical. What does it mean to think about a diagnosis “socially”? A superficial answer would identify the social conditions or setting of the person who receives a diagnosis, but thoughtful consideration of the social nature of diagnosis is much more expansive.

Diagnoses are created, delivered and experienced (by patient and doctor alike) as social phenomena, just as much as disease labels.

This is not going to be a commentary that falls into an argument about nothing being real. Diagnoses are part and parcel of material realities, but also much more; understanding their social content makes them more effective tools for clinical medicine.

In one sense, diagnosis is how medicine gained the station it enjoys today. In the great kerfuffle of the 19th century, with countless kinds of healers, magnetisers, naturopaths and so forth, doctors used diagnosis and its techniques to leapfrog the non-scientifically qualified practitioners they were struggling to silence. So, one of diagnosis’s first social roles — then as today — is to define jurisdictional boundaries. Diagnostic skill is medicine’s point of difference. The skilled diagnostician has a particular status that non-diagnosticians cannot access.

Diagnosis thus became, and remains, linked to social power and prestige. The authority to diagnose adds to the standing of the clinician, and creates a potential point of tension. If diagnosis can, as it does, distinguish the normal from the abnormal, provide access to services and treatments, and explain a particular state of reality, it is a socially enviable skill to exercise. The contest over diagnoses, diagnostic delegations, diagnostic authorisations — and even Dr Google! — are all illustrations of its immense social worth, and why being able to diagnose or be diagnosed is so socially relevant.

How a diagnosis comes to be created is also profoundly social. Conditions don’t come pre-labelled. Influential thinkers unite around disorders to develop diagnostic categories.

Think of Alzheimer disease, for example. Before it was a diagnosis it was a disorder. The problem of cognitive decline was the focus of rival teams of researchers and resulted in a range of explanatory claims and descriptions. On the one hand, there was Fisher who was working on senile “plaques” in Prague while Alzheimer beavered away on neurofibrillary tangles in Munich. It was Alzheimer’s laboratory director (Emile Kraeplin) who named the disease after his junior partner. Later political actions to draw attention to this issue more broadly expanded the previous focus on cognitive decline to create the expansive, and inclusive, diagnostic category of Alzheimer disease for very broad considerations of dementia in the elderly which we use today.

Every diagnosis has its own social life which influences other disorders, and the lives of the patients and clinicians involved in the diagnosis. Take for example, long COVID.

The prevalence of fatigue and the relationship to a previous coronavirus disease 2019 (COVID-19) infection has pushed both clinicians and patients to see long COVID as a distinct entity from other forms of fatigue. To see this type of fatigue as unique to COVID-19 is also to say it is different from medically unexplained syndromes, such as myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia. Are they too the result of a reaction to an undetected viral infection? Should we be lumping these conditions, or splitting them? Should we be seeing them as different or the same? Deciding whether this is a post-viral versus a post-COVID-19 condition has significant consequences for how these other conditions are seen, explained and experienced.

Referring to one condition as COVID-19-induced and another as medically unexplained contributes to what has been referred to as the “prestige” of diseases (here and here). Long COVID becomes somehow more worthy or valorous than say a “banal” chronic fatigue or medically unexplained symptom, historically at the bottom of a hierarchy of diagnoses.

Diagnosis is also hot property because of the social goods it can deliver.

To have a diagnosis is to explain a disorder. In addition to the explanation, the diagnosis also delivers a plan, a therapy and a prognosis. Possibly more importantly, it legitimises a complaint, makes the suffering “real” in the eyes of the clinician and of the entourage. It also gives a fabulous shorthand for telling a story. Rather than saying “I have a problem metabolising protein, which results in build-up of uric acid and sharp painful crystals in my joints,” one can say simply: “I have gout”. Point made.

While the shorthand is effective, the diagnostic stories are often facile. Presumed associations between gout and gluttony, chronic obstructive pulmonary disease and cigarettes, diabetes and sloth get told and retold, clinging to the diagnoses like glue, yet often untrue. These stories reinforce diagnostic hierarchies from which it is hard to escape.

That a diagnosis can be unflattering or even stigmatising underscores just how social a diagnostic category can be. It shapes the diagnostic process. How the patient tells the story of illness, how the diagnostician reads it, will be shaped by beliefs about particular diagnoses and the people who receive them. Whether a rash is eczema or scabies matters socially, and in different ways, well beyond any clinical impact.

Diagnosis is not the whole story.

A study we did on emergency department patients discharged without only a symptom-based diagnosis (ie, “lower back pain”, “abdominal pain”) showed that when they did have an explanation, a plan and a treatment, some of them felt diagnosed, because these were diagnosis’s promise, albeit delivered in its absence. Deliver an explanation, a plan and a treatment and the patient has what they need. This also explains the tension and contest which often arise when a diagnosis is not forthcoming in some of the complex syndromes that medicine can’t explain.

Every time we diagnose someone, we classify them. We clump them together with others — for good reason — but we also obfuscate their differences. This sometimes helps, and other times hinders, their care.

So, I’ll close on a thought experiment. What would the practice of medicine look like without diagnoses? What would be lost? What would be gained? How does the thinking about the social life of diagnosis open the way towards thinking differently about health, illness and disease?

Diagnosis is often indispensable to patient health, but it isn’t always. Thinking more broadly about diagnosis may help us find ways to understand health in potentially surprising ways.

Professor Annemarie Jutel is a critical diagnosis scholar at Te Herenga Waka – Victoria University of Wellington, in Aotearoa, New Zealand.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.