The patient ‘refuses’ to have that infusion you prescribed.
The patient ‘failed’ to contact X-ray for that scan.
The patient ‘won’t let me’ lock their tablets away.
The patient ‘doesn't want’ to see that other specialist.
The patient ‘will not’ be admitted.
The patient ‘is being difficult’ about their tablets.
Most of these sentences are followed by, ‘so what are you going to do?’
I try to resist saying ‘good for them’ but it does sometimes slip out. That language is revealing and carries layers of judgement about who really knows best. I respect the patients who say no, it gives me a glimpse into what is important for them right now. They probably remind me of myself.
I had a patient in the past who would be just way too identifiable to discuss in detail, but I admire their every decision. They do not want any treatment for their condition, they are quite happy to live with the risks. They love discussing blood results in detail, they want to hear descriptions of their blood film so they can monitor progression and make informed decisions. They read all the latest papers and research. They are in no way ‘refusing’ treatment.
If someone wants to be a bit awkward, let them, you don't know what's going on but you might find out.
Another doesn’t want infusions, they hate hospitals, don’t like public transport and would much prefer the second-choice tablet instead. They aren’t ‘non-compliant’.
Another felt patronised that they weren’t able to look after their own tablets when in hospital. They had to be locked away in their bedside locker and only taken when prescribed. These are tablets that they have managed for years with their chronic illness, a disease they know better than any single one of us on the ward. They aren’t ‘being difficult’.
If someone wants to be a bit awkward, let them, you don't know what's going on but you might find out. Make sure they are safe and able to decide, make sure they have all the information they need in a way they can understand. Give them time to consider, give them options, give them good explanations, understanding and then a bit more time after that.
Beware the tendency to infantilise patients. Language is important. The words we use to address patients when they are at their most vulnerable, the way we document their decisions, the way we communicate to colleagues about them all reflect and reveal what we feel. Much has been written about letters with phrases like ‘this charming gentleman’ and you have to think if that is really what you mean and what you are revealing. It reminds me of the letter I happened to glimpse in my own GP records about myself age three presenting with slightly bowed legs − this ‘splendid young chap’. Yes, it works on a three year old (and my legs are fine now by the way).
I can guarantee I will not be ‘compliant’ with everything you ask me to do. I too would kick up a fuss and be difficult if you took control away from me.
So just a warning to anyone looking after me in the future. I can guarantee I will not be ‘compliant’ with everything you ask me to do. I too would kick up a fuss and be difficult if you took control away from me. It would be my own private but very public rebellion. I have experience, I have judgement and I have priorities and they might not match yours. Do not deny me that. I will tell you about some of the things I don’t do, but definitely not all of them or why. I know me better than you do. I will be stubborn, difficult and blunt to get the right things done. I need to make the decisions that are right for me.
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