I’ve been asked about the Serious Illness Conversation Guide. I do comment on such documents with a heavy heart. I have no doubt that they are meant to help, to be useful. And probably they are. Yet, Amicus Plato, and all that.
Having said this (and I do mean it), let me now summarise what I think about the guide: Oh, for pity’s sake, use some verbs! Yes, that’s my half-hearted semi-campaign to get medicine, psychology, occupational therapy and all others to use verbs! Verbs are cool!
Ok, I’m being somewhat cryptic. So, let’s consider what the conversation guide focuses on. It’s
In a nutshell, the serious illness conversation guide focuses on things. And I just cannot understand what is wrong with asking:
How do you understand where you are with your illness?
Or perhaps (this is seriously controversial, I’m sure!)
Where are you with your illness?
I really can’t understand constructing human experience in terms of objects like understanding, goals, fears….I’m probably strange and inadequate, but I actually don’t have those things. This is because I understand or not, I want something (or not!), I am afraid of something. Or not. And I just refuse to espouse those abstract objects in which you want to package my experience as if they were clear and obvious.
So, let me offer a (sweeping) generalisation: medicine is obsessed with nouns. Well, that’s the linguist talking. So, let me rephrase: medicine is obsessed with things. It’s not interested at all with what I think, understand, feel or whatever. This somehow doesn’t pass muster. No, what counts is when you, medics, deal with objects. You somehow can’t deal with people doing things. No, medicine must transform those actions into little things which are ready for your inspection. When you have ‘information’ about my ‘understanding’, you can relax. Because then, at your leisure, obviously, you can examine this understanding of mine, probe it with your diagnostic stick, and then pass judgement as to whether it is appropriate, sufficient, adequate. Somehow when I do things, it’s not as easy. Actions seem more fleeting.
But here starts the problem that really bugs me. I actually do understand that you must see me and my experience in terms of things. After all this is what the International Classification of Diseases tells you. It describes the approved diseases, adding, for good measure, the classification criteria which are represented as things as well. I understand this; that’s just life, tough. What I don’t understand is why you want to impose this worldview on me. You impose the objects medicine keeps inventing on me as if they were the natural way of looking at me. At the same time you seem to forget (I am being kind here) that the ICD has never been meant to be used so literally in the way you talk to me.
And I, if you don’t mind, would prefer to see my world in terms of verbs. Because this is how I talk. So, no, I have never asked anyone (for me it’s neither in English nor in Polish) about their ‘understanding’. If I want to know how a person understands something, I would probably ask: “How do you mean?’ or something of the kind. Because this is how we, real people, talk. No one asks about ‘goals’. We ask about what people want, we ask people about what they can or cannot do.
But here comes the best part. Whenever I say these things to medics, the response is inevitable. Oh no, we don’t mean that we talk like this. This is only for us, an aide-memoire, obviously, we wouldn’t use such expressions literally. And I get this special look of half-disdain, half-pity, how could I possibly think that?
So, just to make it clear, the logic goes like this. You create a guide of how to talk with your patients, but instead of putting instructions of how to actually to talk to them, you put instructions which you don’t really want to be used. This is because you know that doctors are very good at ignoring their own instructions and coming up with their own ways of talking. You just like the challenge and, for example, when you face a person who is seriously ill, a situation which, admittedly, must be stressful, you like nothing more than just start thinking about your own way of talking them. And, given that you ask about understanding, goals and other wonder-objects in my life without the stress, I dread to think what goes on when you are stressed.
So, how about, do humour me, for once coming up with instructions of how to conduct a conversation, a serious conversation, which could (only ‘could’) be directly applied in an interaction with your patient? How about transforming the Serious Illness Conversation Guide into this:
- Where are you with your illness?
- What do you want me to tell you?
- When (or if) you get sicker, what will you focus on?
- What are you afraid of?
- What can you not live without?
- How much will you go through in order to live longer?
- How much does your family know about what you want and what you care about?
Just to make it clear – it took me about 25 seconds to write it (question 3 took about 15 of those). I am not claiming at all that this is the way. No, I’m just suggesting one way in which you could re-write the conversation guide describing reality more in terms what people do or things are. Of course, I could now start explaining why I wrote those questions and not others, but I think I would like them to speak for themselves.
Now, I understand that there is a very significant drawback in using what I wrote. It is considerably less stilted than the guide you have. It is also less scientific and medical, probably giving you fewer ‘results’. But then, what do you expect? I’m just a linguist and I certainly don’t know how to talk to a patient. Sorry, wrong way! I haven’t got this (secret and mysterious) knowledge, skill and competence as to what conducting of a (proper) conversation with a patient should look like. Better, innit?