You say diagnosis, I say medical cover-up

From ‘Jewish plait’ to ‘excited delirium’, a history of fake diagnoses will make you see doctors differently

THE IMAGINARY PATIENT by Jules Montague

320pp, Granta, T £16.99 (0844 871 1514), RRP £18.99, ebook £18.04

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Imagine you are a parent in the 1850s. Your child requires a minor medical procedure. The doctor uses chloroform to prevent suffering, but your child dies before waking from the anaesthetic. In your distress you blame the doctor. But the bewhiskered professional gravely assures you that the death was not his fault.

Your child was suffering from the invisible – but increasingly common – condition of status lymphaticus. He tells you that more than 820 articles have been published on this disease throughout the medical journals of the US and Europe. They say the condition – almost never diagnosed in a living patient – causes sudden death in children and young people. Post mortem, doctors have observed that sufferers all have an enlarged thymus (a lymphatic organ found in the front of the neck). The expert diagnosis means that you accept your child’s death was inevitable. You pay the learned doctor and he welcomes his next patient.

We now know there is no such thing as “status lymphaticus”. The reason that the dead children had an enlarged thymus was because all children have large thymuses compared to adults. In the mid 20th century, scientists established its importance in building a good immune system. But before that discovery, hundreds of children had their thymuses removed under chloroform and a third of those children died. Because it wasn’t the thymus killing those kids; it was the chloroform. The diagnosis of “status lymphaticus” served only to exonerate culpable medics and bolster the medical establishment.

Former consultant neurologist Jules Montague believes this is a story that all doctors should bear in mind when it comes to giving a diagnosis – and all patients when it comes to accepting one. While Montague is clear that, at their best, “diagnostic labels have the capacity to direct us towards cure and consideration”, in The Imaginary Patient she delivers a shocking history of the many ways in which medical diagnoses have “shown themselves to be a form of obfuscation”, which in many cases “legitimised unforgivable treatments”, and been used as weapons of racism, sexism and homophobia.

Montague takes us back to 1554, when women with menstrual disturbances and eating disorders were diagnosed with “chlorosis” (which they were assured could be cured by copulation and pregnancy) and Jews in Poland were blamed for infecting the population with “Juden Zopff ” (Jewish plait), which left sufferers with sore scalps and matted hair. Readers might roll their eyes at the ancient ignorance, but Montague quickly whisks us up to last century and begins to interview survivors of far more recent medical injustices. A gay man tells her about his decades of physical and psychological pain from receiving electric shock treatment after being “diagnosed” with homosexuality in Bradford in the 1970s. He offers a heartbreaking account of how the medics’ diagnostic “bible” was influenced by the Catholic church.

Montague also speaks to the relatives of black men who died while being restrained by police. From them she learns about the diagnosis of “excited delirium” which lawyers have sought to use to exonerate overzealous restraining officers. The condition was first described by a coroner and professor at the University of Miami in the 1980s who believed that cocaine use (in men) and sexual activity (in women) could bring on sudden bursts of superhuman strength followed by sudden death.

By 2003 the Los Angeles Times reported that “excited delirium” was being identified as the cause of most deaths in custody. When a police officer pressed his knee into the neck of George Floyd for at least eight minutes and 15 seconds (I found different times for this online) in 2020, an officer at the scene was heard to say: “I am concerned about excited delirium or whatever.” The American Civil Liberties Union argues, convincingly, that “excited delirium” is simply a “whitewashing” of the use of excessive force. It is the modern version of blaming the thymus and not the chloroform, in order to exonerate the establishment.

Montague also explores the debates about contentious conditions such as chronic fatigue syndrome, oppositional defiant disorder and post traumatic stress disorder. Her writing is woollier when she is theorising than when she is reporting on past events, and I did find myself yearning for crisper opinions, but then again, Montague believes we should all learn to be more open-minded and flexible. Diagnoses are often matters of opinion and should be subject to constant scrutiny and re-evaluation. The criteria of today will have shifted tomorrow. Doctors must remember that their first duty is to do no harm. And when it comes to a diagnosis, we must always ask: whose needs does it serve?