A few days ago, Twitter was quite excited by a new study on the language of medical notes. The study, called “Do Words Matter?”, answers in the affirmative. Of course, they do, in fact, the use of ‘stigmatising language’ was associated with negative attitudes of medics reading the notes. As I keep saying that medicine pays too much attention to words, I decided to investigate.
Here is the bottom line. The article is not about language (or words) at all (well, almost at all), it sets up a false dichotomy between stigmatising and neutral language, and if does tell anything about medicine, it’s not what the authors intended to say.
Let me start by quoting the authors’ account of the study vignette:
Stigmatizing language in patient charts was characterized by three linguistic features, as elaborated in prior work: casting doubt on the patient’s pain (e.g. insisting that his pain is “still a 10” vs. “still has 10/10 pain”), portraying the patient negatively (with irrelevant or unnecessary indicators of lower socioeconomic status such as hanging out with friends outside McDonald’s), and implying patient responsibility with references to uncooperativeness (e.g. he refuses his oxygen mask vs. he is not tolerating the oxygen mask). In addition, we included linguistic variations such as using the term “narcotic” in the stigmatizing chart note vs. “opioid” in the neutral note. The neutral chart note was written by the study team to serve as a comparison against the stigmatizing language note, while remaining realistic.
First the easy bits: casting doubt is not a ‘linguistic feature’, it’s only done through the medium of language, if stretched, we can say that this is a narrative or discursive feature, nor is ‘portraying the patient negatively’ – the authors describe inserting additional negative information here, nothing to with language at all. The only actual reference to language is switching between the word ‘narcotic’ and ‘opioid’ – and this is actually the one and only language aspect of the study. As ever, it focuses on words, in fact, as many as 2. Yay!
It is actually quite boring and disappointing to see another medical study which claims to be about language, while in fact it is not. And while I think not many linguists attempt to do RCTs (and for a good reason), it might be a good idea for medics to consult linguists when talking about language. Just an idea.
But for me the most significant in this account is the first, as the authors describe it, linguistic feature. The authors decided that ‘stigmatising language’ consists in rendering the patient as insisting that his pain is a 10, while ‘neutral’ language is a statement from a medic which ascertains that the patient ‘still has pain 10/10’. I find this extraordinary; it is an indictment of medicine which, of its own accord, admits that information that a patient insists stigmatises them! Bloody hell! ‘Neutral’ and ‘non-stigmatising’ language consists in a doctor authorising patients’ experience.
And this is quite ironic, isn’t it? A paper which purports to be helpful, in fact, reinforces the very problems it wants to deal with, except that the authors don’t even realise that it happens. I find constructing doctor’s powerful perspective as neutral objectionable in the extreme! And, please, all of you interested in shared-decision making, patient empowerment and other sugar-coating exercises take note. This is what medicine is ‘really’ like – unreflecting, powerful, and, to be quite honest, obnoxious in not looking in the mirror at itself.
After this, let’s have a closer look at the ‘neutral’ vignette.
Mr. R is a 28-year old man with sickle cell disease and chronic left hip osteomyelitis who comes to the ED with 10/10 pain in his arms and legs. He has about 8–10 pain crises per year, for which he typically requires opioid pain medication in the ED. At home, he takes 100 mg OxyContin BID and oxycodone 5 mg for breakthrough pain. Over the past few days, he has taken 2 tabs every 4–6 hours. About 3 months ago, he moved to a new apartment and now has to wheel himself in a manual wheelchair up 3 blocks from the bus stop.
He spent yesterday afternoon with friends and wheeled himself around more than usual, which caused dehydration due to the heat. He believes that this, along with recent stress, precipitated his current crisis. The pain is aching in quality, severe (10/10), and not alleviated by his home pain medication regimen.
On physical exam, he is in obvious distress. He has no fever and his pulse ox is 96% on RA. The rest of the physical exam is normal other than tenderness to palpation on the left hip.
The ‘neutral language’ is all about blanking the patient’s perspective. The note is written by the omniscient narrator (19th-century novel comes to mind) who doesn’t even need the patient tell them that he had been with his friends. Oh no, the doctor simply knows it as he writes:
He spent yesterday afternoon with friends and wheeled himself….
The medic also knows that the patient moved into a new apartment, that the patient believes something, and the pain is in aching quality. You just look and you know, you don’t really need me to tell you anything, do you? Bloody hell, the writing medic must have super-human qualities. And yet, in real life, most of what’s written must have come from the clinical interview and not from the gift of medical sight. I to started think about the declarations and claims of the so-called patient-centred medicine and stopped. Need I say more?
But this is, do remember, the ‘neutral’ note. And if this is neutral, I really have no appetite for this neutrality. If the default is medicine which speaks with its own language, it really does need to have a hard look at itself. And perhaps it really is time to give up this nonsense of ‘neutral language’. There really isn’t any such thing.
Now, what’s really fascinating about it is that what the authors call stigmatising language to a considerable extent consists in introducing the patient’s perspective.
- At home he reportedly takes 100 mg OxyContin BID and oxycodone 5 mg for breakthrough pain.
- About 3 months ago, patient states that the housing authority moved him to a new neighborhood and he now has to wheel himself in a manual wheelchair up 3 blocks from the bus stop.
- He believes that this, along with some “stressful situations”, has precipitated his current crisis.
- Pain is aching in quality, severe (10/10), and has not been helped by any of the narcotic medications he says he has already taken.
- The rest of the physical exam is normal although he reports tenderness to palpation on the left hip.
It’s unbelievable, isn’t it? The authors propose that phrases such as:
- patient states
- he believes
- he says
- he reports
are stigmatising!! Yes, let’s just savour it, a note in which a doctor inserts the patient’s perspective is considered to be stigmatising! Well, at least by the authors, the reviewers, the editors and, presumably, all those smitten by the study.
The study I am writing about is very important, as I indicated at the outset, not because it discovers something interesting about ‘the language’. No, it’s interesting because it offers insight into what medicine values and what it rejects. And, it seems, it values itself and rejects the patient. Put differently, what the study shows is that medicine wants to listen to itself and is completely uninterested in what the patient says. This is so strong that reporting what the patient actually says stigmatises them.
A comment? I wish I could say – gosh, this is quite a slipup. But I can’t. I actually think the article renders medicine exactly as it is (well, you know what I mean). Full of declarations and full of itself. It’s a case of acute orthopraxy. What you must do, it seems, is to repeat how committed you are to patients, to centeredness, to sharedness, to the narrative and I don’t know what else. And you must re-state this commitment as often as it is practical. What you do, well, that no one cares about. It actually, reminds me of latter years of communism in Poland, when people repeated all the required stuff which had nothing to do with what they did or thought.
It is the declaration which is important. And it is the declarations that we, patients, get. And so, the question that I keep wanting to ask is: What do you believe in, medic?