Why does medicine keep getting it wrong? In the case of children with gender-related problems, the Cass Review, published two weeks ago, makes it clear that doctors have been prescribing powerful hormones to these children for years, despite a lack of evidence that this would help them.
“The reality is that we do not have good evidence about the long-term outcomes of interventions to manage gender-related problems,” wrote Dr Hilary Cass, a pediatrician commissioned to assess NHS services by gender.
Dr. Cass described how doctors were strongly influenced by a single Dutch study, which excluded children who dropped out of the study because they developed problems with treatment.
Yet doctors applied the findings to many more children and, as she wrote, “abandoned the normal approach to holistic assessment.” So, for example, children were not assessed the impact of depression.
As a result, young people with gender dysphoria (where they feel that their biological sex does not match their gender), who often suffer greatly, are poorly served by the healthcare system.
High-quality studies of heart rhythm pills prescribed to people who had had a heart attack found they increased the risk of death
I have met many who went to the NHS for help and ended up with surgery and medication, the side effects of which they later deeply regretted.
But unfortunately this is just part of a long-term pattern of healthcare services without evidence of good quality.
The only reason medicine should have any authority is because it is based on science – where assumptions and hypotheses are tested, and questions about harm and unintended consequences are asked. If it’s not based on science, honestly it might as well be homeopathy.
It’s easy to think you’re helping when in reality you’re harming people.
In the 1980s it was recognized that some people who have had a heart attack develop fatal cardiac arrhythmias; these patients often had abnormal heart rates and the logical assumption was that reducing them would reduce mortality rates.
And yes, studies found that taking medications called class Ic antiarrhythmics reduced those abnormal heartbeats.
However, when high-quality studies were eventually conducted, it became clear that they were doing the opposite when it came to saving lives; in fact, the drugs led to an increased risk of death. What seemed ‘logical’ was actively harmful.
And it’s not enough to say you have ‘proof’; it must be of good quality. Take arthritic knees. For decades, surgeons performed “washout” arthroscopy, in which patients make incisions in the joint that are then flushed out with a saline solution — the idea is that fragments of cartilage are cleared out, helping the joint work more efficiently.
Certainly, patients often reported that it made them feel better. But in 2002, a study compared knee arthroscopy to a placebo: Patients underwent either the real surgery or a “placebo” procedure in which they also had small skin incisions and the surgeons “splashed” the saline solution to make it sound as if the real surgery had been performed . happened, but I didn’t actually put the saline into the joint.
For years, pregnant and breastfeeding women with a family history of allergies were told to avoid eating peanuts, in case they increased the risk of allergy in their child. But the number of peanut allergies among the population increased dramatically
Both placebo and real surgery groups improved, with patients describing less pain and better function months later.
Drugs that can’t help you can only harm you – either through side effects or costs to the patient and health care system. That’s why, unless in very specific circumstances, the National Institute for Health and Care Excellence (NICE) now makes it clear that ‘arthroscopic knee irrigation alone should not be used as a treatment for osteoarthritis’.
There are other examples. For years, pregnant and breastfeeding women with a family history of allergies were told to avoid eating peanuts, in case they increased the risk of allergy in their child; parents were also warned against giving peanuts to children under the age of three.
But the number of peanut allergies among the population increased dramatically. The problem was that the studies supporting this avoidance were mainly ‘look back’ studies, relying on people’s memories of what had been eaten.
Then in 2015, a ‘forward-looking’ randomized controlled trial (the gold standard for testing a new approach, where a control group does not receive the intervention) found that babies with severe eczema or egg allergy actually developed fewer allergies to peanuts. when they were introduced as part of their normal transition to a steady diet, compared to children whose parents were told to avoid them (the control group).
In the case of gender dysphoria, what was missing from the study – that one Dutch study – was information about how young people’s feelings would change over time, without hormones or surgery.
In fact, we now have data showing that in most young people, ‘gender dissatisfaction’ – in other words, the feeling of discomfort in the physical body – tends to improve with age, something that should offer great hope in the midst of what could possibly happen. be in great despair.
For decades, surgeons performed “washout” arthroscopy, in which patients make incisions in the joints that are then flushed out with a saline solution. But a 2002 study found that the procedure for knee arthritis wasn’t worth it
The Dutch study also had no control groups, so we could not compare what would have happened without medical intervention.
It is tempting to conclude that any improvements are due to the treatment, when in fact young people could have done just as well – or better – without the treatment.
How do we get around this and ensure we act on real quality evidence?
That’s what NICE was founded for when it was founded in 1999. It was a move away from what was nicknamed “eminence-based medicine”—doing things because esteemed professors said it worked—and toward “evidence-based medicine.”
Dr. Cass makes it clear in her report that the doctors she met had the “best intentions” – and I am sure that is the case.
However, the best intentions don’t work well in medicine unless you also have good quality evidence on your side.
For example, pediatrician and best-selling author Dr. Spock was by all accounts a compassionate, caring man. He recommended putting babies to sleep on their stomachs from 1956 to the late 1970s.
After all, isn’t it clear that vomiting in that position would be less dangerous?
But as we now know, it was wrong; Dr. Spock had based it on theory, not high quality evidence. Researchers later estimated that 50,000 infant deaths in Europe could have been avoided if the high-quality evidence from the 1970s – which suggested it was better to place babies on their backs – had been acted on sooner.
Part of the problem, I think, is the way other doctors’ concerns about treatments have been dealt with – often ending up having to go through whistleblowing procedures and employment tribunals.
That’s what happened to Sonia Appleby, a child protection leader, after she raised her concerns at the gender clinic in Tavistock, the focus of the Cass Review.
We’ve become accustomed to the pharmaceutical industry putting pressure on doctors to prescribe the latest drug even if there are concerns about side effects – and while we’re still not good enough at this, there is at least (usually) some recognition that we should try to resist biased information.
Yet in the case of gender dysphoria in young people, lobby groups seemed to be welcome in the NHS.
Training modules were often sponsored by activist groups – who have every right to express their views, but do not necessarily have expertise in critically assessing evidence. This also meant that the voices of people who had been harmed by medical interventions were not heard enough.
Unfortunately, asking questions was often met with hostility – and worse – than a discussion of the scientific basis.
A recent conference in London to discuss uncertainties about how best to treat children with gender dysphoria was smoke bombed by protesters.
Dr. Cass has made it clear that this should not be an ‘exceptional’ area of practice; I hope that we can now really focus on the young people in need who need help – and that we can do that as best we can, using truly evidence-based, not ideological, care.
Dr. Margaret McCartney is a GP in Glasgow. Her book, The Patient Paradox, is published by Pinter & Martin.