You can’t move these days without someone telling you it’s your choice. Your choice of 15 ways to have your coffee, 24 ways to pay for your shopping, 5 ways to book your next dental appointment. On a trip to Arundel Castle at the weekend I was presented with a bewildering choice of 8 different entry prices, which almost resulted in me choosing to spend my money on something less complicated.
Healthcare is no different. Andrew Lansley’s much-repeated dictum ‘no decision about me, without me,’ implies that the onus is now with the patient to make the choice about what treatment is right for him or her. Would Sir like a stent to go with your angioplasty, – or would you prefer to go large with a CABG?
Actually, I’m all in favour. My over-riding experience of healthcare, like most people’s, is that doctors listen for 15 seconds or so, decide what you need, scribble out the prescription and you’re back in the waiting room, wondering how you never got to the bit where you planned to say: ‘But actually I can put up with it, so long as I know it’s not going to develop into something more serious.’
The problem is the mis-match of information. I know whether my knee pain bother me enough to want to take tablets or go to physio. The doctor knows (I hope) what might be causing my symptoms, and which treatments might help. Together, we could reach the best solution for me – which isn’t necessarily the best decision for the last patient the doctor saw with exactly the same symptoms. But too often, the information isn’t shared in a way that allows us both to use it.
So information is key. At the Patient Information Forum‘s annual conference in May (presciently titled Choice: Valueless without Meaningful Information) I spoke about patient decision aids, which my Consumer Health team at BMJ Group is busy working on. Decision aids are tools to help you make decisions. The idea behind patient decision aids is to address the information imbalance between doctors and patients, by giving the individual the information they need to make a good decision.
At the PiF conference, I used the analogy of choosing a meal. You wouldn’t walk into a restaurant and invite the waiter to choose for you – he doesn’t know your taste, he doesn’t know if you’re vegetarian or trying to lose weight, he may not even have your best interests at heart (trying to off-load that last portion of slightly dodgy steak that ought to be thrown away).
We need a menu. Ideally, we need a menu with all the information we require to make the choice – how much it costs, whether it contains meat, how many calories, the ingredients, whether you can have it here and now, how it’s cooked. We’re then in a position to make an informed decision about lunch. So why are we prepared to let the ‘expert’ make all the decisions for us about the much more important question of our medical treatment?
With patient decision aids, we’re trying to prepare a menu of medical treatments for specific situations, with enough information to help you decide which suits you. That includes not just how well it works to treat the illness (using information from clinical trials) but how much time it takes up (weekly physio appointments, daily tablets, six weeks’ off work to recover from the operation?) and how likely it is to go wrong. When the doctor says breezily ‘Oh, side effects are very rare,’ you don’t know that you share his or her attitude to risk. When my father faced a serious heart operation, the junior doctor blithely told him the mortality rate for the operation was about 10%. The youthful doctor might have thought a 1 in 10 chance of not coming round again was a low risk; it didn’t seem that way to my family.
The aim with decision aids is to take that subjectivity out of the equation, so people can make their own mind up about what they find acceptable. (It’s not easy to do, incidentally. One’s own judgement has a way of creeping into the most objective style of writing). We’re also trying to help people understand that their preferences and views have trade-offs, and that you can’t usually have everything. Want a treatment that will completely get rid of your pain, with no side effects and no risk of anything going wrong? Chances are it doesn’t exist. Effective treatments tend to have side effects. Your role is to decide whether you’d prefer to put up with the symptoms being treated or the possible side effects of the treatment.
Does this mean there’s no longer a place for the doctor’s help in making that decision? Absolutely not – however good we make our information, we can’t include everything and you’re likely to want to talk it through with someone who knows both you and your illness. A doctor can tell you about his or her experience of using the treatment. Someone who’s had the illness themselves can tell you what it’s like to be on that treatment (for them – not everyone gets the same side effects). There’s plenty of space for asking other people what they think. But it’s no substitute for finding out about the aspects of treatment that matter to you, and making your choice based on sound information.
In fact, I think decision aids should be more widely developed. I’d quite like a ‘what shall we have for dinner?’ decision aid, perhaps one that automatically knows whether the vegetables in the bottom of the fridge have gone off. A ‘what shall I wear today?’ aid, especially one with access to a precision weather forecast, would be most helpful. And that’s just the small stuff. Moving house? Choosing your A-levels? Planning a family? Getting the facts and thinking through the options in a logical fashion might just be the help we all need.