Prof Sallie Baxendale
Consultant Clinical Neuropsychologist
Professor of Clinical Neuropsychology
University College London
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. The sorry narrative puts well-intentioned doctors on the wrong side of history again and again. As a cautionary tale of what happens when we lose sight of ‘primum non nocere’ (first do no harm) as our guiding principle in medicine, the story of epilepsy surgery is exemplary.
Trepanning and limb amputation
Trepanning (drilling a hole in someone’s skull) has been conducted for millennia, with evidence of the oldest procedure dating back seven 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 underwent further surgeries. Opening the doors 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 aimed at the head, and 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 the longer the sole target of the surgeon’s scalpel. The surgeons had branched out to recommend limb amputations. 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 or castration, both attempts to curb the immoral sexual appetites that were ‘well known’ to cause epilepsy at the time. For those who wished to retain their sexual organs, advice included admonitions to avoid coffee, chocolate and amorous love songs. Late Victorian treatments for epilepsy were nothing if not eclectic.
Experimenting on the brain
Fast forward to the mid twentieth century and people with epilepsy were once again the unwitting participants in a dark era of medical experimentation. In an imaginative leap, the radical surgical techniques developed in the 1940’s 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 H.M. In October 1953, Mr Molaison underwent surgical excision of the right and left temporal lobes of his brain. In a short paper delivered 6 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’ to the extent that the patient was unable to remember where his room was in the hospital or how to find the toilet.
H.M’s profoundly disabling amnesia and inability to lay new down new memories 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. It is perhaps less well known that he was not the first person to undergo this procedure and suffer this devastating outcome. Scores of people had previously been rendered amnesic before anyone thought to check whether their surgery had had an impact on anything other than their seizures or psychiatric symptoms. They were discovered in a retrospective review, triggered by Mr Molaison’s case. One of the most important lessons to be learned from the hundreds of papers that have been written about this case is that Mr Molaison’s memory loss could have been anticipated and prevented if the outcome of this procedure had been fully evaluated in his predecessors. What is less easy to explain is why 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.
Lessons of History
The lessons from this sobering history are clear:- When doctors:-
1, Fundamentally misunderstand the aetiology of a condition, and/or
2, Treat the symptom rather than the cause, and/or
3, Fail to properly monitor outcomes, and/or
4, Fail to rapidly modify practice in response to known adverse outcomes
our patients suffer, often greatly and often for the rest of their lives, if indeed they survive. These fundamental errors underpin the scandals that pepper the history of medicine. The stakes are particularly high if surgery is involved. It is naïve to think that all of these scandals are in the past. Our descendants will look back at some aspects of our current practice and will wonder at how we could have been so stupid and 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 gender-affirming medicine may well be that scandal. Many detransitioners are young women who underwent treatment for psychological distress which has left them with lifelong, irreversible changes to their bodies: a deep voice, a beard and compromised sexual function. Some have had their breasts surgically removed and may be infertile. Others are young men who have been castrated and have had their penis removed. This is not an argument about the pros and cons of these medical or surgical treatments for trans-identified young people, that is a different debate and one covered elsewhere on this site. Nor is it an argument about the percentage of people who may ‘regret’ undergoing these procedures. The existence of just one detransitioner suggests that this person was offered the incorrect treatment for their condition by the doctors charged with their care. It a clear case where the medical profession caused harm. We are ethically bound to learn and widely disseminate the lessons from these cases. These are fundamental components of the Hippocratic oath.
For many detransitioners, the aetiology 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 creation of a surgical facsimile of the ‘correct’ body. Regardless of whether this formulation of the problem is valid for some, this assumption was incorrect in the case of many detransitioners who clearly articulate as much. (The voice of Richie Hernon is very powerful in this respect.)
Treating symptoms rather than the cause
Once these fundamental errors of misattribution had been made by the treating clinicians, the team embarked on a surgical approach akin to that of the Victorian 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. As for monitoring outcomes, 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 (1). In the case of many detransitioners, their treating medical team have failed their patient at every stage. They have fundamentally misunderstood the aetiology of the condition the patient has presented with and have treated the symptom rather than the cause. Because they have failed to properly monitor outcomes there is no opportunity to modify practice in response. It is unsurprising that the results have been catastrophic.
Blaming the patient
However, in the case of detransitioners, there is an additional, darker layer to this cascade of medical error and harm. The patients themselves are being held responsible for the errors, 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 post treatment 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. 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 misdiagnosis.
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.’ (2) This is an astonishing position to take. Surely what matters ethically is that the medical profession offer appropriate, evidence-based treatment to patients who will benefit from them. Others argue that argue that young trans people have ‘the right to be wrong’ (3) They do indeed, but 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 it does occur and are duty bound to find out as much as we can about these outcomes in order to predict and prevent them happening again. In what other branch of medicine would these outcomes be met with such indifference?
Meticulous assessment is good medicine
There has been a phenomenal increase in young women referred to specialist services for gender dysphoria since 2014 (4). This means that there is a greater number of people who are at potential risk of receiving inappropriate, iatrogenic treatments. To respond to this remarkable growth with a ‘fast track’ (5) to medical transition is to ignore everything history has to teach us. Meticulous assessment is not transphobic and does not invalidate anyone’s identity. It is good medicine and ensures that the right treatment is given to the right patient. We cannot have any branch of medicine that is exempt from the rigours of this fundamental approach. That way catastrophe lies and as ever, it will be our patients who suffer. This is not hypothetical.
Hubris and ideology have no place in medicine
The 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, 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. Hubris and ideology have no place in medicine. The history of surgery has that much to teach us. It is our responsibility to take note.
3. Pang KC, Giordano S, Sood N, Skinner SR. Regret, informed decision making, and respect for autonomy of trans young people. Lancet Child Adolesc Heal. 2021 Sep 1;5(9):e34–5. https://pubmed.ncbi.nlm.nih.gov/34418373/
An edited version of this article was published by Unherd on 7th July 2023 https://unherd.com/2023/07/doctors-have-failed-detransitioners/