What a patient wants

This post, as often happens, starts with a sentence, two, actually. As ever, I want to look at them closely and see what they mean. And then I want to ask the question of rational decisions.

The two sentences come from a recent piece by Margaret McCartney:

It’s only right that patients should know all details they’d like to know and that they have full access to their notes. People should be able to choose between the rational offers their professionals make.

As I was reading the article I almost missed it. I agree with the rhetoric. It ‘empowers’ me, it constructs me as a rational decision maker. What else could I, a mere patient, want? But a few moments later I went back to it, re-read it and thought: Really? I mean, really?! And so, this post is another one in which a linguist meddles in matters medical.

To a considerable extent this sentence sets up a situation as with asking the question “What matters to you?”, a question which, if taken seriously, is simply unrealistic. And, I think, so is Dr McCartney’s sentence. If I should know all the details, I’d like to know, for example, the latest international research/evidence base on the risk and outcomes of the procedure in the particular population (e.g. with a number of comorbidities).

As you might imagine, I could come up with a number of other questions. More importantly, however, I doubt very much that as a patient I will be provided with the information I seek, especially as regards the latest research. Will you go and get it for me? You see, if I have a right to get all the information my heart desires, yes, you should. Will you? And what if I ask you about what you don’t know about the procedure? How about your personal views? They are important in the context, aren’t they? And in fact, when I see the fights around statins, the insight into whether you take them might actually be the most useful!

Alas, I suspect what will happen is that either I’ll be told that I’m being unreasonable or, less likely, a physician will give me a “the way I understand it” spiel. Yaaay!

But let’s assume, however, let’s assume for one second that I can be provided with the information about the latest research on the procedure. What will I do with it? I am a fairly well-educated person and I am very confident I will not be able to do a quick meta-analysis of the results in my head. Better still, what about patients who find it difficult to understand what percentage means? In other words, what about patients who actually don’t know what kind of questions they could ask?

To be honest, I am really irritated by information flaunted in front of my face while I actually have no idea what to do with it! Medical knowledge is complex enough for doctors to barely (hardly?) understand it, so the notion that I, as a patient, will simply assess the evidence and make a ‘rational decision’ just doesn’t compute for me. And, again, I am a fairly educated person, reading some medical stuff (not certain whether I understand it, though).

Incidentally, I really would like an article, a series of articles, or a conference where doctors could actually openly discuss what they don’t understand. How refreshingly cool would that be?!

But problems with the two sentences don’t end here. Dr McCartney suggests that I, as a patient, should have “have full access to my notes”.  And I would like to ask the question: Why on earth would I want that? To have a heart attack?! Clinical notes are a very sad and often distressing reading. Always written at full certainty, never offering the patient’s perspective as an equal one, they are only irritating. Offering me to read them is like offering to look at ice cream without the opportunity to eat it.

Let me put it like that: if you negotiate the contents of your notes with me, I don’t need to read them, because I know what’s in them, if you don’t negotiate, I don’t want to read them because it is likely to be unpleasant reading. And as you ponder this, let me add that in a study of psychiatric notes Justyna Ziolkowska and I have not found a single entry which didn’t contain some misrepresentation of what the patient said. To some (and sometimes considerable) extent, what we were reading was pure fiction! And you want to give me access to that? Thanks, but no, thanks.

Except that this is only part of the problem. Are your notes written in a language your patients will understand? Do you, doctors, actually reflect on it? Do you write your notes so that they will be understood by your patients? Not only patients like yourselves, educated, with some access to medicalese, but also those uneducated. If not, why give them access? To show them they don’t understand the intellectual wonders of your writing? Again, thanks, but no, thanks.

But then comes the best. The second of the sentences brought me to my knees. All these considerations, all this information, all these rational decisions I am supposed to take boil down to….what you, my doctor, offer me. It turns out that I don’t make decisions about what’s best for me, about what I think I want, I make decisions about

the rational offers their professionals make.

And when you stop to think about it, I could have saved you the time to read the above. After all, the real and important decision is yours. I only get to choose what you offer. So, please, don’t waste my time, hey?

Language matters. If you believe my Twitter feed, it matters more than anything else. So, here you have a linguist’s take on two sentences. The two sentences which offer an insight into the contrast between their rhetoric and reality which they construct when you unpick them a bit. And I haven’t even started thinking about reality-reality, you know, about what actually goes on between a real doctor and a real patient.

But this post is not one of disappointment. I actually do appreciate Dr McCartney’s sentiments, they come from the ‘right place’, so to say. The problem is that I would prefer a much more realistic account of the relationship between me and the doctor. A relationship which doesn’t only hold my hand till we’re all mushy. I’d prefer a relationship that understands what you, my doctor, can realistically expect of me and what I can realistically expect of you. You know, like adults do. Only in such a way will we get the rhetoric much closer to ‘reality’, whatever that reality might be.

And perhaps a good way to start would be to begin thinking what reality we – you and me – want. Because I feel that you might still benefit from me actually telling you a thing or two about what I want. And what I want is waaaaay more complex and contextual than saying that ‘patients want information’. You might be surprised to learn that more often than I would expect, I actually don’t and I would prefer if you simply got on with your job and stopped asking questions I have no answers to.


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