For some time now, I’ve been struck by the ease in which medical diagnosis is rendered in terms language. Doctors seem not to do much more but offer labels. As a linguist, I suppose to I should be happy with this informal Medical Society for Appreciation of Language. Alas, I am not. I think the labelling medic should take a step or two back.
Before I start, I want to stress that I realise that this post touches on issues which are way more complex than I can render in a blogpost. The post offers only a few suggestions for consideration.
I’ve wanted to write this post for some time, forever putting it off. I was spurred into action, however, by a recent article on the BMJ blogs. The author talks about diagnosis mostly in terms of offering a label. Indeed, the little lead at the top of his blog suggests that diagnosis is a label and giving a diagnosis is merely about labelling someone in a particular way.
Obviously, I am not a doctor and I pick a fight with a professor of healthcare improvement with some trepidation, but I somehow don’t think that my recent diagnosis of myocardial infarction can be successfully reduced to a label. If anything, my diagnosis is a series of stories, both institutional, social and private and reducing the consultant Paul to giving me a label is nonsense. Incidentally, I recommend a presentation by Annemarie Jutel who, I’m delighted to say, conceives of diagnosis in narrative terms.
Moreover, when I was receiving my diagnosis, a number of things happened. I was told what had happened to me, I was told what the likely consequences were, I could ask a number of questions, and none, interestingly, was about the label. In other words, I did not ask a question like: is the use of ‘myocardial infarction’ appropriate here. This is because I could not care less about this. I wanted to know whether what is medically referred to as myocardial infarction had actually happened.
And no, there is no universe in which a question “Did I really have a heart attack?” can be rendered in terms of metalinguistic (i.e. language talking about language) use of language. My questions were as much referring to reality as they could be!! And yes, this is so, even though in my case reality was someone foggy and the answers were somewhat cagey. But – again – we were not discussing labels!! We were discussing reality, whatever it might have been.
Just like when you buy a car, you don’t really ponder the depths of linguistic labelling and do not wonder how ‘carry’ the car is, and whether the car should be called the car etc. Let’s please get a bit real here and understand that we buy a piece of machinery. Just as I was discussing my heart muscle with consultant Paul.
Now, the branch of medicine where talking about labels really angers me most is transplantology. And so, I would like to bring from oblivion a post about a congress of transplantology I wrote quite some time ago. At one of the plenary sessions, I listened to (and participated in) a discussion about paying people to donate their organs. Except our Western sensitivities are stretched too much when we talk about paying a living person a fee (an honorarium?) for their organs, so part of the discussion was an attempt to hide it. No money would change hands, we could just pay for the donor’s children’s school, or housing, or medical insurance. But that still didn’t feel exactly right, so one of the most vocal proponents of, shall I say, ‘paying which is not paying’, started saying that it is all about ‘helping the poor people’. And at some point, he actually challenged the conference with the question “Who is against helping the poor people?”. I laughed.
But, I would like to suggest, no matter how many labels we use, how many ways we turn it around linguistically, the kidney sitting in me at the moment, is still a bloody kidney. And if you remove a cornea from this poor person whom we so want to help, they will go blind! No, not ‘otherwise sighted’, they will simply go blind. And no amount of labelling will change that.
Now, as ever, things are complicated. And here we come to a slightly more complex issue of labelling in psychiatry. When you read a recent article on borderline personality disorder, you realise that in psychiatry, the diagnosis is actually also talked about in terms of the label. People don’t really like having a personality disorder. There are two issues which I would like to raise.
First, let’s imagine that today the WHO changes, to use the example from the text, the label ‘BPD’ and calls it something else. Let’s say, for the sake of argument, it will call it ‘behavioural pattern A’. What exactly would change? Would any psychiatrist behave differently? Would the NHS change anything? Would there be different recommendations? I actually think that nothing would change. Like nothing. In fact, I think that behavioural pattern A would at first be identified as former BPD, and in time it would become as stigmatising as BPD was (as history of psychiatry teaches us).
Having said this, however, I understand very well why a person would not want to have a diagnosis of a personality disorder. I wouldn’t either. For me it is like being ill with yourself, the name of the illness suggests that the person and its very essence, so to say, is the source of their illness. And for this reason, I think that changing the diagnostic label makes perfect sense. The implications (ideology, as we discourse analysts would say – here is an earlier post on why ideology matters) of the label are problematic, nasty, if you like, they make people unhappy. And for these reasons, I am convinced, it’s perfectly sensible to change the label.
I doubt very much, however, that labels such as ‘jaundice’, ‘myocardial infarction’, or ‘meningitis’ would need to be changed on that basis. And I am yet to see any campaign for stopping making people ‘infarcted’.
Now, let’s have a look at the end of the article in question. Prof. Marshall writes:
the human person should no longer be treated as an ever expanding market place of diseases, benefiting professional and commercial interests while bringing great harm to those unnecessarily diagnosed.
I must admit that I have breathed a sigh of relief. Thank goodness, he went back to talking about diseases and their proliferation and stopped talking about diagnostic labels. Medicine still is interested in disease/illness, not only in words.
Before I finish I would like to say a few words about a recent Twitter discussion about patients who ‘frequently attend’ medical facilities. The discussion was fruitful, many people, including senior doctors, offered examples, sometimes quoting the ‘people first’ principles of speaking. Lovely. But in my view the whole discussion took them away from what seems to me like a considerably more important discussion. Why is there a problem in the first place? What service do those ‘frequent fliers’ get? How do you focus on their needs? Unfortunately, no one cared – everybody was interested in coming up with yet more helpful a label. And I genuinely believe the discussants did want to be helpful. And I keep asking – do you really think that those people will have a better experience seeking help when we change the label? I don’t.
And so, the point I am making, again, is for medicine to go back to medicine and stop being infatuated by language. Yes, language matters (and I want to stress it, as I was once told I am the only linguist who can be heard saying that language doesn’t matter), but it matters in mysterious ways. Moreover, not everything that involves language can be reduced to a linguistic problem. Indeed, things medical are complex enough without the constant worry about language. And my myocardial infarction will remain it, regardless of what you call it. So, stop worrying about language, focus on how to keep me alive. For, sure as hell, using different words will not.