Sunday, 15 May 2011

Patient autonomy, and the 'wrong' decision.

The concept of capacity is easy to understand but often difficult to put into practice. Judging whether someone has the ability to make a decision for themselves can be tricky, and watching how different people go about it says a lot about their views on the role of the doctor and the importance of patient autonomy.

In assessing someone’s capacity to make a decision, all you have to convince yourself of is that they understand the information that is relevant, and that they are able to retain this information for long enough in order to make an informed decision based. That seems simple enough, but in practice, this straightforward assessment is easily obscured by other factors.

In particular, it can be difficult to support someone who has made what we think is a dangerous or foolish decision, even though they may have clearly demonstrated the capacity to make this decision. It is not for us to judge the wisdom of someone else’s personal choice. Also, capacity has to be assessed on decision by decision basis. I often hear sweeping statements that patients do not have capacity. Full stop. Blanket statement. In much the same way as we assume a suspect is innocent until proven guilty, we must assume that someone is able to make a decision, until we assessed their capacity for the specific decision at hand, and having taken all necessary steps to help them make the decision for themselves. This can be time consuming, and it is often tempting to take short cuts, but I was reminded of the importance of doing it properly when dealing with one particular patient recently.

The gentleman in question was an articulate, intelligent man of 70, who had suffered a significant illness, resulting in a sudden and severe reduction in his physical function. We had great hopes for improvement, and were looking forward to supporting him through his rehabilitation in hospital.

One afternoon, however, he told me that he had arranged for his wife to come to the hospital that afternoon with a couple of heavies, and take him home. He had made his choice, and he was happy with that. I pointed out the impact this might have on his physical recovery, and how he did not yet have any of the equipment he needed at home, and the hazards that this might subject him to. He retained this information, he weighed it, and then he politely declined our help, preferring instead to take his chances at home.

It’s hard not to make a judgement about a patient when they make a decision that completely ignores your recommendations. Foolish? Yes. Wrong? No. Dented professional pride? Definitely. But, it’s not about me is it?

When I asked him what his reasons were, he told me that he did not believe in empiricism, or a rational actor paradigm. In fact there is no such thing as an objective reality. So when I told him that we would be able to help him recover on our rehabilitation ward, his world view told him that he would be able to undergo the same kind of recovery at home, using his strength of will and imagination.

He made me question whether, in a medical world that invokes evidence base, empiricism and objectivity, are we honest enough to admit that many of the decisions we make are not actually as objective as we claim them to be?

A chap called Jack Dowe has made exactly this argument, pointing out that when we make a clinical decision, our failure to wholly separate ‘deciding’ from ‘doing’ means that we only ever take the evidence into account. His proposal for a formal process of modelling and structuring decisions (called Decision Analysis Based Medical Decision Making) is cumbersome and clunky, and clearly has never been anywhere near the hustle and bustle of a busy on-call shift, but it raises an important point for all of us: whenever we make a decision, there is something of ourselves in that decision. The evidence we cite rarely covers all the particular aspects of the individual patient we are treating, and inevitably, there is a certain amount of judgement involved. And where there is ‘judgement’ there is always the risk of bias and prejudice.

There’s a passage in Gormenghast, where a group of dusty professors in Titus Groan’s school sign up to an existentialist way of thinking very reminiscent of my patient’s, based on the premise that human experience is what the mind allows it to be; love, pain, fear and so on are all subjective phenomena, and they only occur when the individual wills them to. However, when the ringleader of this group of teachers dies, one of them admits that when he burnt his arm, it actually hurt like hell, although he didn’t admit it at the time. One by one, the rest of them admit that this belief system they were bullied into following by their late colleague is actually bunkum.

But as doctors, our role is to treat patients in a manner that fits with their way of doing things. This might feel like it is hard to do when we find ourselves supporting decisions that we do not agree with, and while my patient  represents a fairly extreme example, he was a useful reminder that sometimes doctors hide behind a facade of empiricism that fails adequately to acknowledge the degree of uncertainty involved in medical decision making. Remembering this can be a useful tonic for medical arrogance, and the importance of respecting patients’ wishes.  

1 comment:

  1. We're taught that under the current law, people do have the right to make stupid decisions. I like to keep that in mind.

    An excellent blog post. Thank you.