Saturday 9 April 2016

Outcomes of Sex Reassignment Surgery

My recent consideration of the book Galileo's Middle Finger and my previous interview with Helen Boyd have prompted me to think again about the science of sex and gender. As I have mentioned many times before, there isn't a lot of hard, reliable science out there.

You might consider that science isn't the best tool with which to view transgenderism. To me, that's a little like saying that counting isn't the best tool with which to view how much money you have.

Opposed: Prof Paul McHugh
Since the study of transgenderism is such a huge field, let's narrow it down to one, relatively well-delineated question: should genetic males be offered sex reassignment surgery? You might already have an answer to this question, one way or the other, but let's look a bit more closely.

Detransitioning is the process whereby someone post sex reassignment surgery, living as the opposite sex, regrets their decision, and returns to their original sex. We know it happens, and that means that sex reassignment surgery isn't for everyone.

Paul McHugh, an eminent psychiatrist, and University Distinguished Professor of Psychiatry at Johns Hopkins in Baltimore, went so far as to discontinue sex reassignment surgery at Johns Hopkins in 1979, after studying the outcomes. He wrote:
McHugh: We saw the results as demonstrating that just as these men enjoyed cross-dressing as women before the operation so they enjoyed cross-living after it. But they were no better in their psychological integration or any easier to live with. With these facts in hand I concluded that Hopkins was fundamentally cooperating with a mental illness. We psychiatrists, I thought, would do better to concentrate on trying to fix their minds and not their genitalia.
You can read his whole 2004 article here. I can see how some of his terminology could be inflammatory, but he comes across as someone who believes what he is doing is right. Before you dismiss him completely, read the whole article. In particular, his review (in the same article) of the previously-misguided surgical treatment of intersex children is very balanced and enlightened, and I find it very difficult to disagree with any of it.

Benefits and harms

Suppose you have heart disease. Your doctor suggests you take aspirin, because there is good evidence that aspirin prevents heart attacks. You take aspirin, confident that you will not have a heart attack, because you are doing the right thing.

But it isn't as simple as that. Not everyone with heart disease will suffer a heart attack, so not everybody needs to take aspirin. And some people who take aspirin will still suffer a heart attack, meaning that aspirin is incompletely successful at preventing heart attacks.

Balanced; benefits and harms
All we can say is that aspirin reduces the risk of heart attack. The actual reduction of risk per person is unexpectedly low. It's only when this small benefit is multiplied by thousands of people across a population that it becomes demonstrable. Multiplied across tens, or hundreds of thousands, aspirin can be shown to prevent hundreds of heart attacks.

But aspirin isn't harmless. As well as its benefits, aspirin causes harms. Again, per individual, these harms are tiny, but multiplied across a population, aspirin can be shown to cause an increased risk of bleeding events. We tend to think of these as risks, but to me (and others) this is an unhelpful word, as it implies that risks are avoidable, where in this case they are not: they are inevitable. It creates the irony that some people will take aspirin and experience only the harms (even though most people expect only the benefits!).

There is therefore a bargain to be struck, between the benefits and the harms of any treatment. In the case of aspirin, we can see that the benefits strongly outweigh the harms, and therefore it makes rational sense to take aspirin. For some treatments, the balance of benefit versus harm is not so clear-cut.

There are also people who are already at risk of having a bleeding event. Those people have a different balance of harm versus benefit. For some of them, it may still make sense to take aspirin; for others, it may make sense not to.

So aspirin is a simple example (there is an excellent discussion of aspirin in this context here on Alvin Lin's blog). This article is about the benefits and harms of sex reassignment surgery.

More complicated than aspirin

Once again, we are faced with a population: people born male who request sex reassignment surgery. It's clear that, if we provide that for all of our population, some will receive benefits, and some will receive harms. Some will receive a mixture of both benefits and harms.

Confusing: statistics
As ethical, and rational people, what we want to do is to maximise the benefits and minimise the harms. Our best efforts may mean that more people have benefit than harm, or more correctly that the total sum of benefit outweighs the total sum of harm. (But it may be hard to judge between a hundred people feeling better, but one person losing their life: which is the greater sum?) If we decide that the balance favours performing the surgery, that's an argument for offering the surgery. If, however, we decide that that the balance favours not performing the surgery, then that's an argument for not performing it.

This is the argument put forward by Paul McHugh, but he is missing one important point: that even if the balance of harm and benefit favours not performing the surgery, this applies to a population, and not individuals, and there may therefore be individuals for whom the benefit is greater. In other words, even if, on the whole, surgery is more harmful than beneficial, there will still be some individuals for whom surgery would be the right thing.

The corollary of all this is that, even if surgery is shown to be more beneficial than harmful, there will still be some people for whom surgery would not be the right thing; in other words, surgery still wouldn't be for everyone!

I'm sorry if I am making your head spin. What's the answer to this conundrum? Science, and plenty of it.

Counting your blessings: estimating benefits and harms

The first question is this: taken as a population seeking sex reassignment surgery, how does the sum of benefit compare to the sum of harm?

You might think that's easy: just find a load of post-op transsexuals and ask them if they are happier since they transitioned. Most of them will say yes. So there's your answer, surely? But a sceptic like me would say: hang on. You might not be counting everyone. Some people might have detransitioned. Some people might have taken their own lives (this number is non-trivial where gender dysphoria is concerned, as this study reminds us). Some people might be so miserable that they declined to answer the survey. This is sampling bias, just one of the many biases potentially associated with research.

I came across this useful paper here at the Bournemouth and Poole Joint Strategic Needs Assessment (JSNA) page. It seems to cover the whole UK, and it has a lot to recommend it: it's short; it contains excellent information including great statistics, and it seems to have a very good idea about the priorities in the care of transgender people. On the other hand, it doesn't say who its authors are; it gives no date, and no sources for its figures. I would really like to know if this is some sort of annual report, and if so, where it comes from.

What it says (in brief) is that sex-reassignment surgery is becoming a lot commoner in the UK, but that trans people face a lot of difficulties in schools, in the workplace, and in their personal and emotional lives. So does sex reassignment surgery result in a greater quality of life?

It's difficult to estimate quality of life. You can't measure it directly; you can only ask people to report it. As a result, it is very prone to error and bias, and people telling the researchers what they think they want to hear, or telling them what they wish were true.

Thankfully for us, Una over at Transas City has done the homework for us, and presents a magnificent, detailed meta-analysis of 34 studies from the literature, together with a very detailed discussion of the strengths and limitations of each study. To save you going through it, the bottom line is this: transsexual treatment (not just surgery) is usually (but not always) associated with a better quality of life afterward, though some problems (such as social integration, difficulties finding employment, and so on) persist. I can't praise Una's article highly enough; she has really put in a lot of hard work to bring this data together.

Meanwhile, Elizabeth Hungerford over at Sex Matters presents four different studies, which suggest increased risk of mortality (including suicide) in transsexuals, increased criminal behaviour, and a disconnect between the subjective reporting of outcomes (most people reported improvement) and the objective reporting of outcomes (a lot of complications were reported). She writes:
Hungerford: As this brief review of long term studies illustrates, positive patient satisfaction should be separated from objectively measurably negative outcomes in order to fully understand the efficacy and “success” of “sex reassignment” procedures. We must be skeptical and refuse to accept emotionally motivated claims of “necessity” that are not supported by long term evidence. We must subject these studies to rigorous, unflinching analysis.
And I really think she has a point. Sometimes, giving people what they want isn't the same as giving them what they need. What should a good doctor, using the principles of medical ethics to guide them, offer the person who asks for sex reassignment treatment?

So where does that leave us?

Cumbersome: scientific research
The ideal scientific study will never happen. In it, a large cohort of gender-dysphoric individuals will present for treatment. They will be subjected to an intense battery of psychological testing, designed to demonstrate every facet of psychological function, and every hint of psychiatric illness. They will then be randomised into at least two arms (preferably three). In one arm, they get full treatment: hormones, surgery, the works. In the second arm, they get the next best treatment: counselling, cognitive-behavioural therapy, maybe antidepressants. In the third arm, they get no treatment at all, but get observed to see what happens if you have no treatment at all. The three groups get followed up for a long period (e.g. a decade) to see what the outcomes are. We decide, based on the result, what the best possible treatment for gender dysphoria is.

The reason this study will never happen falls into several areas. First, to enrol patients in a study, you need to fully inform them of what might happen. Tell someone seeking sex reassignment surgery that they may be randomised to a group which doesn't receive it, and they will instantly withdraw from your study. Second, you need a large cohort of people to get robust results, and it's very difficult and expensive to conduct large studies on large groups of people. Third, the longitudinal followup required means that many researchers cannot devote the time required. A PhD, for example, would normally require all the research to be done in a few years. But unless we wait for a lot longer, we might only observe a "honeymoon period" where everything seems rosy (or potentially the opposite: a period of turmoil and unhappiness while settling into a new life which is ultimately more satisfying). Finally, as described here, nobody really wants to touch this sort of research any more.

One solution: real informed consent

By what means can we identify people, in advance, who will ultimately benefit from sex reassignment surgery? Or who won't? The answer is: we cannot. Nobody can tell the future. Doctors are no more able to tell the future than anyone else. And there are a lot of surgical procedures where the outcome is far from certain in advance. Coronary artery bypass grafting, for example, improves lives for many thousands, but opening someone's chest with a saw and plumbing their major blood vessels into a pump (in order to carry out the surgery) is risky, difficult, and expensive.

Informed: consent
Nonetheless, there is a solution, and it is the same as for any type of surgery. We fully inform the individual of the very best information we have, and let them make the choice. We make the assumption that the adult acting with capacity is the best judge of their own best interests. Note that Paul McHugh has already made up his mind--doctor knows best--and he is happy to make the decision that he knows better than his patients what is best for them. Having decided that transgenderism is a mental illness, he may possibly be more comfortable with the notion that transgender people lack capacity to judge their own best interests. This sort of medical paternalism is (thankfully) well on the wane.

Informed consent for surgery might look something like this:
Sex reassignment surgery is likely to be painful and leave you subject to several complications, including incontinence, scarring, bleeding, infection, wound breakdown, blood clots, and even your own death, though this is very rare. The surgery will be permanent and cannot be reversed. You may not have full sexual function afterward, and you may never be able to experience orgasm. Afterward, you are likely to feel better in yourself, but your risk of suicide will remain high, and you may still experience difficulty integrating into society. If you still want the surgery, sign here.
In my experience, most surgical consent forms tend to stress the negative. They need to be seen to make it clear to the patient that while everyone hopes the surgery will go well, and tries to bring about a great result, that might not actually happen.

But making people clearly aware that surgery might go wrong, and even if it goes right, it won't solve all their problems, is a big step forward from saying "no, you can't have surgery". People should be given this information early and often during the consent process for sex reassignment surgery, so that they can really weigh the decision.

I haven't had sex reassignment surgery, so I don't know what the consent process is like. Those of you who have, please post your experiences and comments below.

Meanwhile, we can only hope that particles of good science continue to be done, and that meta-analysis of those particles can clarify the picture for everyone.