The other day, I read a very moving account of a patient’s interactions with health professionals after being diagnosed with mesothelioma. The patient was Prof. Kieran Sweeney, a clinician, who later died of the illness. Here are my reflections on what he wrote.Let me declare my hand. I think Prof. Sweeney’s account is great, brilliant. And it is so, because it doesn’t focus on the grand scheme of things. It focuses of small, insignificant things.
So, what does Kieran Sweeney say? Well, he talks about the staff looking downcast and none of them being able to address his anxiety, about a throwaway remark which had a physical effect, about not being told about the diagnosis, ‘crass attempts at humour’, requests to do things ‘for me’ (it’s about the locus of control), the pleasure of deployment of authority.
(I need a digression here. I heard doctors and nurses’ requests to do something ‘for me’ a zillion times. It’s always irritated me, but I’ve never focused on it, never understood it. Sweeney’s account is brilliant – instead of doing things for myself, for my health, I do things for my nurse. It makes no sense, really).
Prof. Sweeney ends:
What I have always feared in illness was anonymity, being packaged, losing control, not being able to say “this is who I am.” In the end, one is left alone, here, in the kingdom of the sick.
For me, this account is about a complete breakdown of communication. In a nutshell: what is said is unneeded, what is needed is unsaid.
Before I go on, I would like to point to one thing. Prof. Sweeney’s account is an account of a patient. But then note his language. This is hardly a patient’s language, is it? Full of medical terminology, full of medical knowledge. But doesn’t he suffer like the rest of us? Where has the ‘patient’s language’ gone?
OK, that’s my rant. The real question, THE question is: How do you overcome it? How do we avoid what Prof. Sweeney identified as the problems. Or, let me put it in a more straightforward way, how do you communicate? Well, the bottom part of the article had this as one of the solutions:
Promoting a sense of shared work through a commitment to regular planned communication
And this is just about the only ‘rule’ which is about communication (yes, I know, there is one about miscommunication). In other words, if you plan your communication, you will be fine. Oh, how easy and simple. Just plan. What exactly you plan, remains somewhat unclear, though.
And here, again (and again again), is the problem. There are no simple all-or-nothing rules which apply to clinical communication (or any other, for that matter). You cannot simply say: ‘If you say this and this, you will be fine and your patient will happy, satisfied and whatever positive else’. It doesn’t work like that and let me summarise the problem again. Patients are different, they experience things (like, you know, their illness) in different ways. To make matters worse, what you say means different things to different people and even to the same people but in different contexts. In other words, you can plan all you want, but if you get a patient like me, an awkward git who is also a professor interested in social sciences of medicine, all your plans can be thrown away. And please, don’t tell me that I am the only patient who is different.
So what’s the solution? To be honest, I don’t really have one. But I can offer a couple of thoughts, which are unlikely to be earth-shattering or offer an easy way out. It’s becuse communicating with a person ‘in pyjamas’ is simply bloody difficult. Because s/he is in pyjamas, ill, suffering and you are not.
It doesn’t hurt you, it hurts me. You don’t worry, I worry. And you will never bridge this gap between us. Between you, doctor, and me. Me, Darek Galasiński (or is it Prof. Galasiński?), with all my idiosyncrasies, assumptions, beliefs, cultural and academic background. Clinical communication is much more difficult and complicated than a rule, two or however many. Clinical communication happens in varied and complex contexts and it is presumptuous to think that you can simply reduce it to a couple of instructions.
So where does it leave you, doctor? Well, there is one other solution, I think. The solution is our relationship. The relationship in which I understand that even if you make a mess of what you say, I still assume and understand that you mean well. You know, everybody makes mistakes (how about acknowledging them, doctor?), you too, but if I know that you make them in good faith, I might actually understand them. Just like I understand when my friends and loved ones make them. We get over them. So, it might in fact all boil down to issued of empathy.
As I write this, I would like to be able to be more positive. I wish, I could simply say – do this and do this and you will be a great communicator. I’m afraid, I don’t think you will. That said, I firmly believe it makes sense to teach communication in clinical settings. Not rules of speaking, but rules of reflecting on speaking.