I recently posted about a patient who wished to exist outside the system set up at my workplace.
I finished with a question – should we value individual choice above and beyond the systematic delivery of safe care? Well, I suppose I have come to a form of answer.
I still firmly believe that for patients in general to receive high quality healthcare, which is therefore clinically effective, personal, safe (and fair – this bit was dropped from later definitions) it should ideally be delivered in a systematic way which seeks to reduce unwarranted variation, and inherently follows the best evidence where it is available.
However, care should be personal – each patient we meet is unique and therefore we must consider each time how the evidence fits this particular situation, and, in discussion with the patient, establish a management plan which is acceptable to both parties.
So what can we do when this ideal of personalised care seems to be completely at odds with the system in which we work?
Quill (Annals Internal Medicine 1983 98:228-234 – subscription only I’m afraid) looked at doctor patient relationships as a form of contract. Usually the contracts entered into by patients and doctors are explicit, and built on trust – with an exchange of information for a return of advice / remedy / referral / guidance etc. Occasionally it is sensible to define more exactly what is available in the contract being agreed on by each party.
In the case of my patient who would not engage in the system – that is fine – it is their choice. However, it would be wrong – and potentially detrimental to other patients to expend excessive amounts of time pandering to every demand that they might make.
It is surely the doctors role in such a situation to ensure that the patient is making a truly informed choice – ensuring that adequate information is available about what treatments are possible, what services can be provided, but also what consequences there might be if a patient wishes to operate outside the normal bounds of what a service can offer. (please note the choice involved here – I don’t think those that are forced to exist outside the system fall into a similar category)
This is a fine line to tread, but it is important to be aware that one strong patient who defines the terms of their engagement with a service ought not deprive others of that service owing to the efforts made to accomodate the first.
Indeed, we need to start being more honest with patients about the limitations as well as the benefits of what we can offer. I hope that the recent surge in shared decision making will lead to a more open discourse with patients, and this can include logistical factors, as well as medical ones…