A story of Joan (link here), an elderly patient, appeared on my increasingly chaotic Twitter timeline. It was applauded by medics. In contrast, I was struck by how little we get to hear from her. And so, in this post I want to ask the question of what Joan actually said.
So, I re-read the story and wanted to find Joan’s voice. As I expected, there was none to be found. Much what Joan said is reported, but there is nothing that actually offers insight into what she had said. The story only tells us how the doctor interpreted her words.
Before I continue, I want to make a reservation. I have absolutely no reason to doubt the genuineness and sincerity of Dr Finnikin’s story. I also have no doubt that its source is concern for the patient and their well-being. So, I want to use the story as an example of how the patient is backgrounded even in the most empathetic and caring narrative.
So, apart from reference to Joan’s contacting the surgery, the first glimpse of what Joan might have said is this:
When I saw her, she was convinced her medication was making her feel unwell. She dreaded taking them; an activity that took most of her day. She wanted to talk about whether she could stop her tablets.
You might wonder why I say that the fragment refers to what the patient said. Well, the doctor cannot possibly have known that the patient was convinced of something unless the patient had told them (they might have done something, like banging her fist on the table, but, realistically, she must have said something). What is fascinating about the fragment is that the patient’s communication is now represented as a mental state. So, instead of:
Joan told me that her medication was making her feel unwell.
Joan was convinced.
And then we have reference to her fear and her wishes.
Why do it then? Why represent Joan’s words by referring to what she was thinking or wanting. Well, such a strategy offers two benefits. First, and probably more important, it offers us only the medic’s perspective. What was said no longer matters, we only get to see the words shaped by the perspective of the other participant. It’s even hard to challenge the accuracy of the report, as the challenge can only be to the medic’s interpretation. Second, it also offers the medic an opportunity to remove any potential hesitation on the part of the patient. In other words, ‘she was convinced’ removes any hesitation on the part of the patient. Was she really convinced? What did she actually say to make the medic think that? Well, such questions will never be answered.
I want to stress again. I am not suggesting at all that Dr Finnikin is not sincere in his account. I am certain he is. He simply speaks like medics do. Medics do interpret and re-interpret what patients say (there is literature on this, including my own research). Doctors’ notes remove what patients say offering only their interpretation of what had been said. Dr Finnikin draws upon a particular set of communicative practices which construct doctors’ interpretations as objective. In a review of my article, the reviewer once wrote that doctors’ notes are an objective account of what the patient said. Needless to say, it’s utter and complete nonsense but the editor accepted it. Yet, as we see such practices in the article, just as Justyna Ziółkowska and I saw them in our research on doctors’ notes in Poland.
If you read the article further, you will see that Joan’s words are consistently re-cast as her mental states. Instead of speaking, Joan knew, understood, lost reason, wanted, was content. All interpretations, all based solely on how the GP interpreted the patient’s words. But there were a couple of moments when this consistency was broken.
We also discussed what was important to Joan. She was clear that a long life was not her priority.
The first sentence frames the other, in other words, it offers a context in which the sentence must be seen. This time, however, instead of referring to a mental state, the author is telling us about the quality of the message – the patient was apparently clear. So, was she not so clear before, if you must stress it now? What made the message particularly clear? Was it that the patient said: “I am/want to be very clear”? Did she repeat her statements to make sure they would be understood? We’ll never know.
Let’s do some conclusions. There are many ways in which to report what someone said. You can do it by simply quoting it verbatim, e.g. “The patient said: my medication is making me feel unwell”. Assuming that the quote is accurate, we do actually learn what the patient said. A reservation here. Justyna Ziółkowska and I studied doctors’ notes referring to interviews they had conducted (we had recordings of those interviews). All the notes we analysed contained misrepresentations of what the patient had said. All of them!!
You can also suggest that how you interpreted the patients words, as in e.g. The patient stated/claimed/decided/….. There is much research on verbs of speaking and interpretations they offer. For example, ‘claim’ tends to suggest that we don’t believe what was said. Still we get to hear what the patient said.
The far end of the spectrum is when the patient’s words are not reported at all. This is what Dr Finnikin wrote: “she was convinced her medication was making her feel unwell”. There is no way of knowing what was said. It may well have been something like:
I hate this medication. I really do.
If so, is it an interpretation too far then? There is no way of knowing.
It is also important to understand that such reports become an institutional truth. Consider that in the study I referred to above, a patient said that they couldn’t sleep after taking a medication. In the notes, the clinician wrote that the patient slept well after taking the medication. It doesn’t take much imagination what would happen if there were a dispute. Who, do you think, would be believed? The notes are the institutional truth about the patient. Remember? They’re apparently objective.
Making sure that we get to hear what the patient said is not only about ‘the patient’s voice shining through’, it is also to do with the very ethical foundation of doing healthcare. So, whenever you report what you patients say, consider how you should do it. Consider also why you do it in the way you do.It’s way more important and complex that you might think.