The discomfort of patient power

Medical authorities will have to learn to live with “irrational” decisions by the public

Patients will often chose to ignore their doctors' advice and do something that their doctors regard as odd, even crazy. The BMJ described the case of a young man who lost blood after a road crash, declined a blood transfusion, and died in front of disbelieving and disturbed doctors. He was a Jehovah's Witness, and nobody disputed his right to do as he did.1 This is the reality of patient autonomy and power. But does it extend beyond individuals? Does patient power mean that large groups of patients should have the right to behave in a way that “the authorities” think misguided? We see more and more examples where groups of patients chose to ignore the advice of authorities, and it seems likely that this will happen increasingly.

The most prominent example in Britain at the moment concerns MMR (measles, mumps, and rubella) vaccine.2 The authorities, including the BMJ,3 are unanimous in seeing it as a highly effective vaccine with minor side effects. Following a report in the Lancet,4 the public and the media have, however, become increasingly worried that the vaccine may cause bowel disease and autism. Increasing doubts about the vaccine seem to stem from conflicting scientific evidence over possible side effects, longstanding anxieties over vaccination, declining folk memory of the potential horrors of the infections being prevented, distrust of the authorities (fuelled by the government's mishandling of bovine spongiform encephalopathy), and a media campaign motivated partly by a correct instinct to side with the governed rather than the government and partly by newspapers who seize any opportunity to oppose the Labour party. The result is a fall in the number of children being vaccinated and more outbreaks of measles.

The government has responded by gathering together ever larger groups of authorities to back its line that the vaccine is safe and that it would be folly to offer parents the choice of having their children vaccinated separately against each disease.2 The authorities' case is strong and supported by the BMJ. But would any doctor respond to the doubts of an individual patient by assembling authorities to tell the patient of the foolishness of his or her thinking? Perhaps initially, although any doctor should recognise that excessive reassurance may be counterproductive.5 The doctor would eventually do what the patient chose. Should the government do the same for the population and offer a choice that it thinks misguided?

The government's own rhetoric on patient partnership suggests that it should.6 Patients come first and are free to make silly choices. The government should also recognise, as the Royal Society has concluded, that when it comes to assessing risk experts are no better than the population at large.7 This is mainly because assessing risk is not simply a matter of statistics: it also involves factoring in the “horror” of the risk. A very low or perhaps highly uncertain risk of a dreadful outcome may feel to the public like a high risk—and who is to say that it isn't? It may even be—as the proponents of “lay epidemiology” argue 8 9 —that the public is good at combining confused and conflicting information to reach a conclusion.

The first argument against the government giving way is the scientific case that more choice is likely to lead to lower levels of protection and more infections. Another argument is that giving way to the few may cause harm to the many. The result of one set of parents deciding not to get their children vaccinated may be that somebody else's child suffers brain damage from measles. The doctors who watched the young Jehovah's Witness die went along with undoubted harm to the man's young children, but the scale is quite different with public health problems.

MMR vaccine is not the only example of authorities and the public taking different views. A dispassionate examination of the evidence suggests that routine screening for prostate cancer with prostate specific antigen may cause more harm than good.10 But—particularly in the United States—those who argue that case may find themselves howled down and abused.11 Many men, particularly those who have had prostate cancer, resent greatly any attempt to restrict the availability of the test. Arguments over the effectiveness of mammography are more complicated because there are experts and patients on both sides.12 Although the big money is on one side, a united patient view might eventually prevail. Views of patients are certainly beginning to prevail with chronic fatigue syndrome. England's chief medical officer took the bold step of setting up a working party on the condition that included every shade of opinion.13 One result was that half the members resigned before the working party reported but another was that the patient view, based on what experts see as anecdote, was given the same credibility as the evidence based view. 14 15

This is the way that the world is going. It's called postmodernism. There is no “truth” defined by experts. Rather there are many opinions based on very different views and theories of the world. Doctors, governments, and even the BMJ might hanker after a world where their view is dominant. But that world is disappearing fast.