The Resourceful Patient

1.4 The decline in sapiential authority

Sapiential authority is that which derives from knowledge. As the knowledge base of medicine grew, so too did the authority of doctors. However, although the knowledge base continues to grow dramatically, the sapiential authority of doctors is declining.

1.4.1 Patients are now willing to question doctors

Consumerism is a major trend in all developed countries, and as a result consumers, including patients, are less willing to accept the authority of clinicians.

The term 'consumerism' has now fallen somewhat into disrepute, being regarded as synonymous with conspicuous consumption and the excessive use of the world's resources, and there are Web sites devoted to 'anti-consumerism'. The effects of consumerism, however, are widespread, powerful and, in the main, beneficial.

Thus, although some patients were always more intelligent and better educated than some clinicians, it is only recently that patients have found the confidence to challenge clinicians. Furthermore, patients, or at least their representatives, are now being given tools to question intelligently the propositions and assertions of clinicians, thus increasing their sapiential authority. One of the most important tools that they have been given is the skill of critical appraisal.

The Critical Appraisal Skills Programme (CASP) in the Institute of Health Sciences in Oxford has been designed to give patients and the public both the skills to appraise an article and, even more important, the confidence to ask a clinician in a non-threatening way the simple question: 'How good is the evidence?'

In the CASP Programme, participants are taught how to identify the type of research method that is most appropriate to answer a particular question, and then to appraise articles describing research done using that method to assess the quality of research and therefore the strength of evidence.

As one Board member of a Health Authority said:

'I was really excited when I came to join the Health Authority but as soon as they discovered that I was in property, they put me in charge of the Property Committee and I did the same thing for the Health Authority as I did in my day job. The CASP Programme is wonderful - it has given me the skills and confidence to ask clinicians some simple basic questions; this is what I joined the Health Authority to do.'

1.4.2 The World Wide Web gives consumers new powers

Patients now have easy access to high quality knowledge.

The sapiential authority of the clinician could be maintained as long as patients were excluded from medical libraries, as was generally the case except in very enlightened settings such as the National Library of Medicine in Washington.

The volume of medical knowledge available to doctors is growing at an exponential rate. One estimate made by Prof. David Sackett when Director of the Centre for Evidence-Based Medicine at the University of Oxford, was that, to stay up to date, a general physician would need to read 19 papers every day. It is therefore plainly impossible for any clinician, except the super-specialist, to know everything there is to know, and keep up to date. However, a patient with only a single health problem can keep up to date. For rare diseases the patient may know more than the clinician - except, of course, the clinician in highly specialised centres which patients attend from time to time.

Many patients are better educated than clinicians, and even though the doctor may have better esoteric knowledge at the start of a patient's journeys, the patient can soon overtake the clinician. Stephen Jay Gould, the famous palaeontologist and baseball fan, gives a dramatic description of his acquisition of knowledge, with heartening results.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: 'What is the best technical literature about mesothelioma?' She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo Sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realised with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only 8 months after discovery. I sat stunned for about 15 minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness…

The problem may be briefly stated: what does 'median mortality of 8 months' signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as 'I will probably be dead in 8 months' - the very conclusion that must be avoided, both because this formulation is false and because attitude matters so much.'

Stephen Jay Gould, 'The median isn't the message' in Adam's Navel

Gould was not trained as a physician but medical knowledge is relatively easy to understand compared, for example, to Arabic and Astrophysics, and an intelligent patient focusing on one disease, can soon become familiar with its concepts, terminology and evidence.

Some clinicians recognise this and argue that, if they want, patients should be given all the knowledge that is available. Anthony Horan, writing in the July 2000 Newsletter of the American Urological Association, suggests that urologists

'... tell our patients with incidentally discovered, asymptomatic, low and middle grade prostate and kidney cancers that they have a 50-year-old cancer that, if it kills them, will kill them in about 17 years. If it can metastasize, it has already had 35 years to do it. This changes completely the sense of hurry that pervades cancer counselling. The media speak of cancer as though it were a grenade that quickly gets to a certain size and then explodes. Under the age of tumors proposal, there is time for fourth and fifth opinions.

'We should also inform them of our estimate, based on published doubling times and mean time to death figures, of the time to cancer caused death. We should inform them of their life expectancies as determined by actuaries. Patients and urologists can elect a management strategy based on harmony among the age of the tumor, the predicted mean time to death and the actuarial life expectancy.'

Some patients are already experts; with the correct approach many more could develop expertise, since much of the science of medicine is easily understandable.

1.4.3 Doctors are now willing to say 'I don't know'

What are clinicians to do, faced with patients who come in with a stack of print-out from the World Wide Web, sometimes called 'Le maladie du grand print-out' - a 21st century version of the patronising 20th century term, 'Le maladie du petit papier', used to describe patients who presented with some questions written on a bit of paper? The only course for the clinician to follow, bearing in mind the motto of the Chindits that the boldest measures are the safest, is, instead of pretending to know or be up to date, simply to say the three most important words for clinicians in the knowledge era - 'I don't know'.

Surprisingly, although clinicians may find them difficult to say, many patients find them relatively easy to accept, understand and appreciate, and paradoxically it may be that the best way for the clinician to maintain sapiential authority is to disclaim it, providing of course they have the skills to act as a knowledge manager during the consultation.

1.4.4 There is now better knowledge about the frailties of doctors

Patients have not only had better access to knowledge about disease, they also have better knowledge about doctors, and their professed role as honest, disinterested purveyors of scientific information for patients is no longer trusted. With this type of knowledge, public respect for the morality of medicine has been undermined.