Every medical student should acquaint themselves with the discomfiting history of epilepsy surgery. Regardless of their eventual speciality, they will become better clinicians for it. As a cautionary tale of what happens when we lose sight of primum non nocere as our guiding principle in medicine, the sorry narrative is exemplary, putting well-intentioned doctors on the wrong side of history again and again.
Trepanning (drilling a hole in someone’s skull) has been conducted for millennia, with evidence of the oldest procedure dating back several thousand years. Archaeological finds of skulls with multiple holes in various states of repair indicate that at least some of our ancestors survived these treatments and came back for more. Opening a space to let the demons out of someone’s head makes sense, if you believe the pesky things have taken up residence and are running amok inside. At least this treatment was in the right anatomical ballpark, according to our current understanding of epilepsy as a neurological condition. Less than 130 years ago, surgery for epilepsy had “advanced” (or regressed) to the extent that the head was no longer the sole target of the surgeon’s scalpel.
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They had branched out to recommend limb amputation. The rationale was straightforward: if someone’s arm keeps shaking, what more effective cure than to cut it off? Other surgical approaches to epilepsy in the 1890s included clitoridectomy and castration — both attempts to curb the immoral sexual appetites that were “well known” to cause epilepsy at the time. For the squeamish patients who wished to retain their sexual organs, alternative treatments included admonitions to avoid coffee, chocolate and amorous love songs. Late Victorian treatments for epilepsy were nothing if not eclectic.
Into the mid-20th century, people with epilepsy were once again the unwitting participants in a dark era of medical experimentation. In an enterprising spin-off, the radical surgical techniques developed in the Forties’ psychosurgery movement were trialled as treatments for epilepsy. All undergraduate psychology students (and fans of the film Memento) will be aware of Henry Molaison, better known by his initials. In October 1953, Mr Molaison underwent surgical excision of the right and left temporal lobes of his brain. In a short paper delivered six weeks after the surgery, his surgeon reported that the operation had resulted in no real changes, “with the exception of a very grave recent memory loss”; H.M. was unable to remember where his room was in the hospital, or how to find the toilet.
H.M.’s profoundly disabling amnesia persisted for the next 55 years, until his death in 2008. He became the most famous neuropsychological case study in the history of the profession. But he was not the first person to undergo this procedure and suffer this devastating outcome. Scores of others were discovered in a retrospective review, triggered by Mr Molaison’s case. His memory loss could have been anticipated and prevented if the outcome of this procedure had been fully evaluated in his predecessors. More shocking still is that a similar fate was allowed to befall a number of other patients after his amnesia was discovered. Ignorance is one thing, inertia something entirely different.
The lessons from this sobering history are clear. When doctors fundamentally misunderstand the cause of a condition and treat the symptoms instead, and fail to properly monitor outcomes, and modify their practice in response to known adverse outcomes, our patients suffer — often greatly and for the rest of their lives — if indeed they survive. These fundamental errors underpin the depressingly regular scandals that punctuate the history of medicine. (The stakes are particularly high if surgery is involved.)
It is naïve to think that all these scandals are in the past. Our descendants will look back at some aspects of our current medical practice and wonder that we could have been so stupid. They will shudder at how barbaric and crude some of our current treatments are. So where might the next medical scandal be brewing?
The increasing visibility of detransitioners suggests it may lie in wait in gender-affirming medicine. Many detransitioners are young women who underwent treatment for psychological distress that has left them with irreversible, life-long changes to their bodies: a deep voice, a beard, and compromised sexual function. Some have had their breasts surgically removed; some may be infertile. Others are young men who have been castrated.
This is not an argument about the pros and cons of these treatments for trans-identified young people. Nor is it an argument about the percentage of people who may “regret” undergoing these procedures. The existence of just one detransitioner suggests that an individual was not offered the correct treatment for their condition by the doctors charged with their care. It is a clear case where the medical profession caused harm. We are ethically bound to learn, and widely disseminate, the lessons from these cases.
For many detransitioners, the cause of their distress as a teenager was misattributed by their clinicians to the notion that they had been born in the wrong body, and that they would be helped by the surgical creation of the “correct” body. Regardless of the validity of this treatment for some — on which I make no comment — this assumption was incorrect in the case of many detransitioners. Once these fundamental errors of misattribution had been made by the treating clinicians (who in the case of GIDS were primarily psychologists, and not medically qualified), surgeons and endocrinologists embarked on a procedure akin to that of limb amputation for epileptic seizures. The detransitioners’ discomfort with their body was a symptom of psychological distress, not a cause, but their medical team prescribed treatments with an irreversible impact and surgically removed healthy tissue in an effort to cure their symptoms.
In most other fields of surgery, this would be classified as a “never event”, and an exhaustive investigation would be launched. But in the case of many detransitioners, their treating medical team has failed their patient at every stage. They have fundamentally misunderstood the nature of the condition the patient has presented with and have treated the symptom rather than the cause. The astonishing failure of the Tavistock & Portman NHS trust to monitor even primary outcomes were laid bare in the original trial of Bell vs Tavistock, with further shocking details subsequently presented in Hannah Barnes forensic account of the collapse of the service. This failure means there is no opportunity to modify practice in response. It is unsurprising that the results have been catastrophic for some.
However, in the case of detransitioners, there is an additional, darker layer to this cascade of medical errors. The patients themselves are being held responsible, by the very doctors who made them. The term “post-treatment regret” appears to abrogate any responsibility on behalf of the treating clinicians for these outcomes. Some argue that there is some degree of regret associated with every medical procedure. However, there is a fundamental difference between patients who are unhappy with the outcome of elective treatments recommended for their condition, and those who have been misdiagnosed, and have had healthy tissue surgically removed as a result. Many detransitioners were given the wrong treatment for their condition. These people are not experiencing post-treatment regret, they are responding appropriately to the consequences of a grave medical failure.
Advocates of gender-affirming care argue that “no one can know whether post-treatment regret will occur; therefore what matters ethically is whether an individual has a good enough reason for wanting treatment”. This is a remarkable position to take. Surely what matters ethically is that the medical profession offers appropriate, evidence-based treatment to patients who will benefit from them. Others argue that young trans people have “the right to be wrong”. They do indeed; doctors, less so, particularly when they are wielding a scalpel. Just as trans youth deserve access to the very best in evidence-based medicine, so doctors have a fundamental duty not to offer harmful treatments to young people who will not benefit from them. It is not good enough to shrug and say, “no one knows whether this will occur”. We know that poor outcomes do occur, and are duty-bound to find out as much as we can about these in order to predict and prevent them.
Since 2014, there has been a phenomenal increase in young women referred to specialist services for gender dysphoria. There is, therefore, a greater number of people who are at potential risk of receiving inappropriate treatments. To respond by creating a “fast-track” to medical transition is to ignore everything history has to teach us. Meticulous assessment of a young person’s symptoms is not transphobic, nor does it invalidate anyone’s identity. It is good medicine, and ensures that the right treatment is given to the right patient.
No branch of medicine can be exempt from rigour. Exceptionalism lies at the heart of many medical scandals. That way catastrophe lies and, as ever, it will be our patients who suffer. This is not hypothetical: detransitioners stand before us as living, breathing examples of people who have been harmed. To change nothing as the result of their experience — or, even worse, to make changes that mean similar errors could potentially harm even more people — is immoral. Upholding scientific principles is the least we can do to protect our current patients and honour the thousands who have been failed by the medical profession in the past. The history of surgery can teach us that much. It is our responsibility to take note.