Linguistics of evidence-based medicine

Over the last weeks I have heard the word ‘evidence’ in clinical contexts more often than I care to remember. I hated it every time, every time I felt it was meant to thwart whatever I said. And so it’s time for a linguist’s take on evidence-based medicine.Let me make one thing clear, though. I really don’t know much about EBM and what I do know comes from a few texts and the knowledge I now possess equips me for not much more than a dinner conversation on EBM. Still, I actually think I have something (maybe even useful) to say.

So, each time I heard the word ‘evidence’ in a clinical context was when the doctor (here, in England) was summing up my visit and said something like:

So, the evidence is that….

And he or she would continue with a brief summary which for the most part was his/her take on the blood test results. To be completely honest, every time I heard it, I wanted to say a sentence with three words, the first started with ‘f’ and ends with ‘k’ and has another two letter in-between, and the other two words are ‘your evidence’.  And then scream: “I don’t care, I fell very unwell.”  And this blog, really, is about why I would want to say it.

Well, the situation in the doctor’s surgery is something like that. I sit down, I am invited to tell the doctor what the problems is, I start talking that I have felt very unwell, that life is not worth living like this. Then (sometimes) I get the ICE questions and then the doctor says:

So, the evidence is….

and I start despairing. Because ‘the evidence’ never (like never ever) refers to what I said. The evidence always consists of the ‘objective evidence’, that is to say the bloods and what the doctor saw in my throat. The mention of evidence marks the moment when my whole narrative, which, to be honest, I am sick and tired of repeating, disappears. Somehow, how I feel is never part of ‘the evidence’ and I might as well have said nothing.

And here we come to what I think is a linguistic problem (whether it’s more important than the medical one might be a matter of perspective). First, it’s about the process of communication. What happens in the doctor’s surgery, has nothing to do with communication. In fact, we only pretend. The doctor asks me to talk because s/he already knows that I should be able to voice my concerns. But after I’m done, my story is cancelled. It’s like s/he never heard me, it becomes irrelevant in the face of the almighty, objective, powerful ‘evidence’. Yes, it’s another version of what I call ‘institutional muting’.

But what gets me going really is how it is done, the actual clause:

So, the evidence is…

Let’s take it apart, then. First, consider the ‘so’. It’s a conjunction. This suggests that it has some link to what has been said before. Yes, it opens a new sentence, but the new sentence is part of a larger ‘story’, larger language unit. In such a way the doctor suggests that his evidence is in one way or another linked to what has been said before. Nice trick, you could say, because it’s not. As I said, what has been said before, well, what has been said before by me, does not find its way into the ‘evidence’.

But now comes the real treat. The declarative clause in 3rd person, no qualifications, the clause simply describes reality in a neutral and objective way. The doctor does not suggest that the ‘the evidence’ is part of his opinion. It’s not about what he thinks. No, the sentence suggests that what he talks about is the case.

Moreover, starting with ‘the evidence’ places it as the theme/topic of the sentence and therefore suggests we (the doctor and I) know what s/he talks about, it is already part of the ‘given’, he only clarifies what the ‘evidence’ is (here is a brief introduction to the information structure of clauses/sentences). There is no question, it seems, what might be the evidence, after all that it is evidence, to repeat, is positioned syntactically as a given. He offers a summary.

And, to be honest, this is what irritates me. I understand completely that medicine does not and cannot rely only on my story. I understand that the doctor has his/hers. But what irritates me is constructing it as the objective truth. No, the evidence is not….What is the case is in fact that you decide to focus on certain things and ignore some others. There is nothing objective about it, it is your judgement. And it might be a/the right judgement, but do not pretend it is more than that.

I’m afraid this is not the end, though. Such constructions undermine the trust between us. Because I start wondering whether you actually do understand that you are not talking about some objective truth, or whether you think I am stupid enough not to be able to understand an explanation of your judgement. As we pretend to communicate, we just waste energy dancing around what’s at stake – how I feel and what we can do about it. Moreover, this dancing for me means also that our relationship is unravelling, together with trust and respect.

But I want to finish with a digression. A few days ago I wrote about “the patients’ language”. I argued that there is no such thing. And this post should also be read as reinforcement of this message. Perhaps for some people a sentence about ‘the evidence’ works and reassures them. Unfortunately, it doesn’t work for me. I see the sleight of hand in it, the insincerity or thoughtlessness (take your pick). I need a different ‘language’. I need an accounting of my story and or yours, otherwise it makes no sense and there is no communication between us. This is because I am not ‘a patient’, the half-witted prototype in your head. No, I am me, and, perhaps surprisingly, I actually understand quite a lot.


1 Comment
  1. I find this so interesting because the evidence (as far as I can tell not being in oncology myself) for the efficacy of chemotherapy is not very good. The oncologist’s position is (as far as I can tell) at best taken from a shaky evidence base. From the little I do know, it seems chemo doesn’t work for most people (I won’t give a stat, being a patient not a Dr, but it is surprisingly highly ineffectual from what I can extract). Not only that but they don’t know why it works for those it does or why it doesn’t for those it doesn’t. A friend said she knew lots of people chemo had worked for, but the chances are, they would have been ok anyway. Nobody would use a mental health treatment with the rate of success of chemo. Turn down the ‘opportunity’ though, and people get very worried, they start talking about patients denying life saving treatment.

    My treatment plan is based on stats that are surprisingly old, they are survival stats based on outcomes, but could be as old as 10 years. And then about those people who die, most of them die of secondary cancer (breast cancer that has travelled to elsewhere in the body). This is fatal but we don’t know what those stats are because they’re not recorded as far as I can tell. Cause of death is recorded, but if you die say of heart failure or pneumonia that is what is recorded as far as I can tell. So the survival stats start to look really quite pants at best, very skewed at worst. I need to write to Radio 4’s More or Less!

    The other interesting thing for me was that nobody wanted to talk about chemo in my first appointment, but I knew from the point of diagnosis that I didn’t want it. I was told I was racing ahead to talk about it because we didn’t know what my treatment options were. From that appointment on though, chemo was a fait accompli. It was mentioned as if we’d never had the conversation about racing ahead, that we’d had an entirely different dialogue. In the racing ahead appointment, my question was “how does my voice get heard?”. I did actually ask that directly. I wanted to know how my voice got taken into the multidisciplinary meeting where they discuss treatment options. The answer wasn’t given but it was that my voice won’t be heard.

    Why does this matter? Because I never wanted chemo and the side effects are awful (for me) but I was frightened into it.

    Apart from being frightened, which is fairly normal when you have cancer, my rationale was that chemo was my best hope against secondary cancer but nobody wanted to discuss that. Maybe I was racing ahead again but there is what I consider to be quite a high risk and for various reasons I am at high risk. The nurse (yep them again) even tried to dispute my stat of a 3rd of people with breast cancer getting secondary cancer, it isn’t a 3rd exactly because 30% isn’t a third, but given not all the stats are recorded I feel like I am being conservative. That dialogue turned into what constitutes a third (33.333% recurring) so who exactly is avoiding the frightening conversation there?

    I didn’t turn it down, but I wouldn’t do it again. The evidence is that the evidence isn’t good enough and it was used to silence me.

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