Over last week I met a lot people interested in shared decision making. The discussions I had at Dartmouth College and at the Johns Hopkins University offered me a much more nuanced understating of SDM. Still, my scepticism remains.
It all happened at Zack Berger’s Johns Hopkins ethics class part of which I took. In the discussion with the students, one of them gave the following example. She proposed a scenario in which she has terminal cancer and doctors gave her 3 months to live. But with aggressive treatment it can be extended to half a year, but there are consequences for her quality of life. She says, however, that her brother is getting married in 4 months’ she would like to attend the wedding. It’s important to her. In such a way she has a clear (social) preference for the treatment and she can discuss it with her doctor and take a desirable course of action. I thought the example was very good, but I didn’t think this in terms of shared decision making. In fact, I think SDM is a secondary issue.
For me the scenario the student described is that of communicative rights and in particular the right to open the channel of communication. In other words, it is the issue of being able to talk about what you want and being listened to by your clinician. Let me explore that some more.
If we think that the idea of medical interview is one in which I, the patient, can offer the doctor my story, a narrative of my experience, then we construct medical consultation in which I have a right to speak in a manner that suits me. Of course, that doesn’t mean that our communicative rights the same. The doctor will always be able to ask me questions that I will not be able to ask her/him. Still, it is, I think, fairly accepted (be it in declarations) that medical interviews should not be question-answer sessions, but, rather an opportunity for me to tell my story. That has consequences and the most important one is that such understanding of medical interview assumes my right to speak freely.
But there is another right which is at stake in the scenario proposed by the student. It is the right to open the communication channel. In other words, as a patient, I would like to be able to initiate communication, moreover, I want to be able to start topics! You might think that this is something obvious and natural, yet, I don’t think it is at all. The ability to give up the sole control over whether and how we communicate is far from easy. And judging by patients’ testimonies, appeals for more active listening or advice to patients to insist on their ability to ask questions.
And here we have the basics of SDM – the right to free and unfettered story. But it’s not enough. As I often grab the right to speak and speak freely, I am met by an addressee who says something like:
So, the evidence is….
as they turn away to the computer screen which will provide them with the ‘real evidence’. So, the basics of shared decision making is not only my right to speak, that right must also be acknowledged and espoused by the person I sit in front of. In other words, if after what I say, the doctor looks to the computer for ‘real evidence’, there is no point in my wasting my breath, is there?
And here we have the key to shared decision making. It consists in open communication in which both the doctor and the patient have equal rights to communicate, rights which are acknowledged and lived. No more is needed, I think.
But then there is another question. Why recast SDM as an exercise in communication? Well, it’s because when you look at data in which shared decision making is practiced, what’s actually needed in those exchanges is precisely what I would call ‘equal rights to communicate’. Doctors struggle to give their patients the space in which to speak. And it’s not particularly surprising, I think.
You might think, however, that it’s only medics who are not very nice and they don’t perform very well. Well, not really. Because in order for them to engage in SDM, I, the patient, must also play my part. I must ask the question, I must say my bit. And recasting SDM as a communicative exercise allows us to see this problem more clearly.
There is a reservation to be made here, though. I do want to make it clear that I have no wish to blame the patient and make them responsible for not speaking up. In fact, I think, the patient’s unwillingness to engage in talking is perfectly understandable. Who wants to talk if you’re ignored? Who wants to be told that what you say is eminently ignorable because of the doctor’s computer screen.
To be honest, this is something which is probably the most difficult bit in what I’m suggesting here. I think that getting your patients to understand that they can simply tell you things and you will listen to them is almost a Sisyphean task. But it’s a task which tends to be ignored. As medicine focuses on how doctors communicate, it tends to ignore that it has to communicate to someone. And so many of us are sick and tired (here is a link to a post on why I don’t want to see a doctor).
And so, I’m arguing that SDM is a communication matter and should be seen as such. But there is a problem. Medicine is not very good in engaging with communication and it hasn’t got the tools to do it. And it’s a problem there is probably no easy solution for, apart from suggesting that we should create a new subdiscipline – medical linguistics, or if you care about such things, linguistic medicine. Probably because I’m a linguist, I tend not to care about labels so much. And I also do understand that medicine has done much excellent research into shared decision making.
Still, I want to point to another advantage of understanding shared decision making in terms of the communication process. First, it brings us closer to understanding that clinical communication is not only about content, but also about the form. And it’s not enough to understand that you must ask a question, it is also important to understand that questions have linguistic form that projects an answer. It’s something that is surprisingly difficult to sell to medics.
Second, I think understanding that the basis of SDM is about the communication channel offers understanding that there isn’t and cannot be shared decision making fit for all people in all contexts. This is because you communicate differently with different people.
And in the process we come to a point which is so obvious I dread making it. The moment you realise that SDM is about communication and access to its channel, you begin to understand clinical communication better. And then the (communicative) sky is the limit….