Sorry to layer disillusionment onto despair for those of us worrying about Trump’s election. This Guardian piece caught my eye a couple of weeks ago for its account of the Choosing Wisely campaign from the Academy of Medical Sciences – speaking for 22 specialist colleges – which identifies 40 clinical tests and interventions that have little or no benefit. For the Guardian author – Fay Schopen – this was all rather depressing. ‘The world is somehow a less joyful, more utilitarian place when you know that tap water is just as effective at cleaning cuts and grazes as sterile saline’.
But do we really have to be cast down by acknowledgements of the limits of medicine? Don’t we already know that treatments don’t always work? From the flu jab that was the wrong strain for the year, to the grommets that fall out, to the cancer treatment that doesn’t prevent untimely death, we are brought up against the borders of medical knowledge all the time. I’ve been talking to colleagues working on asthma in Brighton this month and their research suggests that the steroids prescribed routinely to patients are not only ineffective but may even worsen symptoms in some. The limits of medicine are experienced quite commonly. We need doctors as well as patients to acknowledge this, and find ways to have conversations about the times they don’t have much to offer. The Choosing Wisely campaign does not seem the best way to achieve either.
Firstly, the campaign is shaped by professional societies who offer only a limited set of tests and treatments that they say are ‘unnecessary’ and should be avoided. For professionals visiting the website there is a page offering a handful of citations to evidence each retreat. For patients there is just a bland statement of fact, with just sometimes an acknowledgement that patient preferences may point to different courses of action. These may reflect cultures in the different specialties. For example compare:
You should only be considered for medication to treat high blood pressure, to prevent heart disease and stroke, if you have other risk factors and blood pressure readings consistently above 140-159/90-99.
Back pain is common and effects most people at some point in their lives. If you have back pain and there are no other concerning features (such as compression of the nerve roots) you are unlikely to need investigations such as X-rays.
There is no one way to come to terms with a life-threatening illness. Decisions about your care must always suit your own personal beliefs and circumstances. Terminal cancer will often involve difficult decisions about your quality of life versus longevity. The decision as to what treatment is best for you will always be yours, and it is important that you discuss it fully with your loved ones, doctors and specialist nurses.
More generally, there is an underlying assumption that ‘knowledge’ is owned by the professional, and that it is this knowledge that shapes the final decision on treatment. To me, the first sentence of this quote pulls against the second.
A doctor can only know which course of action is right for you after a discussion about your experiences of your illness; your social circumstances; your support needs; your preferences and attitudes to risk and what being well means to you. This is what healthcare professionals refer to as ‘shared decision making’ which is also summed up by the phrase “no decision about me, without me.”
Secondly then, for all the talk of shared decision making the campaign therefore misses the opportunity to involve patients in acknowledging cases where the profession cannot ‘know’ the right course of action, because of real uncertainty about the meaning or effects of tests and treatments. The simple instructions of many of the recommendations leave little space for doubt. While, on the website quite firm knowledge is claimed even about issues that might best be understood by patients as well as clinical ones.
If you are having a surgical procedure, day surgery should be considered as the default option and is suitable in many cases (except complex procedures). Day surgery allows for a quicker recovery with less disruption to you and your home life and also cuts the risk of hospital acquired infections
Scientific uncertainty is barely acknowledged in the recommendations. Initiatives like plain language summaries of trials, systematic reviews and NICE guidelines seem more likely to offer ways to talk about the many occasions where doctors don’t have evidence to decide about tests or treatments, or can’t know what will work for the individual.
As so often, with this campaign patients are being asked to take on new responsibilities – to ask themselves ‘do I really need this test, treatment or procedure’ – but professional authority is scarcely ceded. Instead we seem to be asked to share the work of reforming medicine and saving money. The US campaign – which began in 2012 – is explicitly interested in avoiding ‘waste’ and encouraging professionals to take responsibility for sharing out finite resources. But while there the patient may be wondering if tests or treatments are allowing hospitals to inflate bills for insurers, in the UK we are surely more likely to wonder if we are still getting access to the right treatment quickly enough.
Finally, by focussing on places where the evidence is relatively clear, the campaign also fails to challenge doctors to imagine the possible harms of medical intervention. In this it seems less interesting than the growing interest in ‘overdiagnosis’ as a focus of professional self-critique and reform. The term ‘overdiagnosis’ points to the problems the central cognitive work of medicine. By contrast ‘Choosing Wisely’ embodies the contemporary preoccupation with choice, but uses more neutral language than ‘diagnosis’ (e.g. ‘tests’, ‘investigations’ and ‘treatments’). We can also compare the visual language of the two campaigns. The picture used on the front cover of a BMJ special issue on overdiagnosis shows a patient many times larger than the numerous health professionals clustered around in an image reminiscent of Gulliver pinned down by the curious Lilliputians. Clinicians are a race apart, but also ‘cut down to size’. Choosing Wisely uses an image showing clinical staff taller, younger and more mobile than a patient pinned into a wheelchair by a doctor who looks to me like a wonderful illustration of the concept of ‘mansplaining’.
Compared with activities currently pursued by the Cochrane Collaboration, NICE and patient organisations, Choosing Wisely seems a missed opportunity to ask doctors to reflect more deeply on the limits to their knowledge, to engage patients in conversations about uncertainty, and to check their privilege. The campaign may trigger a moment of disenchantment for some, like a loss of faith in Father Christmas, but I suspect few are really surprised medicine cannot always deliver. The campaign fails in that it does not acknowledge this or seek to use it, but talks to patients like naive children. In my recent experience, the truth about Father Christmas doesn’t usually come because an adult breaks the news, but out of a sustained campaign by kids observing, debating and even experimenting. Choosing Wisely fails to connect with patient curiosity – about the limits of medicine, the meaning of risk and the reasons for suffering, including back pain that seemingly can’t be cured.