Shared decisions? No, thank you.

Some time ago a tweet appeared in my timeline in which its author asks a little notice on doctor’s door “Your health, our concern, your responsibility.”  

When I saw the notice, I thought that the responses would be rather negative. Indeed, the doctors expressing their opinions about the notice stressed that responsibility should be shared. Isn’t it heart-warming?  But before we all melt away in the sugar of such declarations, let me consider the ‘shared responsibility’ from my point of view. It’s the point of view of, shall I say, a thinking patient. Once again, this is my own subjective take on things – I don’t wish to claim that what I describe is common.

1. First of all, how does ‘shared responsibility’ square with the statement I hear from doctors

So the evidence is…

Surely, if responsibility is shared, doctors should take my ‘narrative evidence’ much more seriously than simply letting me speak for 7 minutes only to ignore it completely after I’m done. If the responsibility for my health is shared, then we must also share the responsibility for the evidence we use. Unfortunately, from where I stand, it doesn’t look that doctors are particularly keen on that. The evidence is firmly in the grasp of the doctors.

2. The second point is related – I am yet to start thinking that doctors are actually interested in the stories I want to tell them. They prefer to focus on the ‘bloods’ and ignore whatever I say around how I feel. The sharing has a precondition, it seems. It only concerns those things that they decided were important. And let’s face it, this whole social and psychological context doctors are so keen to talk about, never features in the ‘important conversations’. The important conversations are those when the doctor tells me what the world is really like. And I just listen in awe (nodding as appropriate).

3. And then it’s  real fun. The moment when the doctor really asks me to share responsibility. Indeed, I was once asked by a doctor which medication I would like to go on.

We were soooo sharing responsibility, I was right in the centre of the decision process. And I was as smitten by the clumsy attempt, as I was baffled by it. So, I looked at him in bewilderment and said: “How on earth should I know? What exactly am I to base my decision on? I know no research, no evidence base, the only thing I can go on is your 10-second description of the meds.” And even if we assume that he was actually familiar with the current research (which I doubt very much), a 10-20-second explanation hardly does it justice, does it? No, there was no decision aid.  And while they can be problematic, at least I would have some sort of semblance of objectivity which is outside the current consultation context.

But the most bewildering thing was the surprise on the doctor’s face. Apparently, he thought he was being totally helpful and empowering and, silly and ungrateful me, I was laughing at it. We never spoke of ‘sharing responsibility’ again.

4. The sharing ends when you blame me for example for putting on weight, as I recently have because I can’t run. As I think I am ill, you insist that I am completely healthy and I am, in fact, looking for an illness, as you once told me. Of course, then it turned out I was ill, because another doctor said so, then another piled on. Then you decided I was ill, but it had nothing to do with sharing responsibility.

I am not entirely certain, but I think there is a paradox here. I am invited to share responsibility for things I have no idea about, but there is no sharing when it comes to what I perceive as you failing me. Also, you can stop the sharing at your convenience. We don’t share that responsibility, either.

 

So, above is my response to the declarations of sharing responsibility. From my point of view, they are designed mostly to make you feel better. For me they are only irritating. Yet another way of paying lip service to slogans of empowering me and disempowering you. Kumbaya.

But there is one more aspect in all this. As you discursively hold hands with me and we sing a song about sharing responsibility, I would actually prefer, if you told me:

Yes, it is your responsibility.

Because the bottom line is that it is my problem, if I lose weight. Let’s not beat around the bush, regardless of whether I am ill or not, I need to do it. Not you. Blaming me doesn’t exactly help, but it doesn’t change the facts. It also hurts me, it’s me who feels unwell, who is worried, who is scared, who feels helpless. So please, don’t share responsibility with me. Leave me with mine and take yours. For when I hear another of a zillion declarations that we’re in it together, I start feeling like a child who just doesn’t understand and needs to be led by hand by papa-doctor. To be completely honest, more and more I think that the current progressive medical rhetoric infantilises me and I hate it. But this is for another blog.

The notice on the door at least makes one thing straight – I must do my bit. I must finish the course of antibiotics, I must not lie to you, I must take care of myself. You will never relieve me of these duties towards myself. And the fact that you make it clear, does not mean that you cannot be empathic, nice, friendly and genuinely care about me (as a doctor). I would really prefer this alongside your openness in thinking, rather than your assurances about sharing responsibility.

 

I dedicate this post to Rosamund Snow. We were planning to write it together. Rosamund suggested it and I was honoured to accept her invitation to write together. I am so very sad that we didn’t. This post would have been much deeper and sophisticated, if we had. Rest in peace, Rosamund. You are missed.

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