Handling Incognizance, a challenge for the health system

Pierre-Marie Gagey

     Even if our health system is not perfect, it administers medical knowledge in a globally satisfying way. But present knowledge is nothing in view of what we still have to learn. The health system tries to integrate that very ignorance in its perspectives, yet experience teaches us that it handles Non Knowledge in a way that is reduced to the categories it knows. But how else could it do?

Handling Knowledge

     We have long known that knowledge cannot be efficient unless it is organized. And today, numerous doctors can be proud to participate to a fluid medical care line that values their specialisation. The trauma surgeon, for instance, is glad to see the wounded arrive on his operating table in the best possible conditions after they have been collected, medically transported and reanimated by others than the surgeon, and the line will continue after him until re-education is over - not forgetting the financial reimbursement of all this machinery, which highly conributes to its success. That image is a simple scheme of the multiple levels of organisation that govern nowadays the handling of medical knowledge for the patients' benefit. But that knowledge is far from being complete.

The ignorance of doctors

     Doctors do not like to talk about their ignorance! And they certainly have good reasons to keep silent. Such a subject would not increase the patients' necessary confidence. However, we must reckon that we do ignore a lot, in spite of all we know, in spite of the remarkable lessons of our Masters, in spite of their considerable works that led us where we are now.

     Such a confession would be of no interest - everyone can say he is ignorant - if it did not lead us to think on Non Knowledge : that is to say, not to think on Nothing, which never came up with anything, but to look into the relations of the doctor and the health system with Non Knowledge.

     The doctor is confronted to his ignorance whenever the patient is resisting the power of his knowledge. And the confrontation to Non-Knowledge is very uneasy. The doctor reacts to his anxiety according to his means, but he first has to exorcize it, either by minimizing the facts ("That's nothing" - who never heard a doctor utter those words ?) or by rejecting the patient. As soon as I started studying medicine I was shocked by the despising manner with which such verdicts as "he is a functional" were sometimes pronounced. The turn of phrase could seem enigmatic, yet the tone was not and it clearly indicated such an anger, at having been discovered ignorant, that it could only be apeased by a breaking off of all relations.

     However, the anxiety of facing Non-Knowledge does not, luckily, exclusively provoke such strong reactions. When the taught landmarks disappear, when the road is no longer mapped out, when we do not know what to do and where to go anymore, then the mind gets anxious, indeed, yet it starts searching. Blessed be ignorance... nothing is more dangerous for the mind than knowledge - being a possession, it can annihilate all quest, and smother the mind. On the contrary, Non Knowledge opens up a space for the life of the mind, a space marked out by the limits of the knowledge our Masters transmitted us, a place to blossom into research.

The dialectics of research

     At the beginning of any research there is an act of faith. And all the researchers of the international scientific community proclaim that fundamental faith as soon as they start working because they would not search if they did not believe that the world is permeable to intelligence. Because of that faith, they become fascinated by the wide areas of incognizance where they are certain there is something to understand, to discover, something that we could call the Logic of the world.

     Yet, the history of sciences teaches us that such Logic is not our logic. When confronted to the real we keep having to shape our way of thinking, to transform it so that, in constant progress, it tries to get closer to the real Logic. It is the interactive game of the world and of intelligence. My observation of the world is sharpened by the world itself so that I can observe further. The faith in the intelligibillity of the world eventually shapes our intelligence.

     These dialectics of research are capital for our subject. They help understand all the flexibility, all the docility, demanded to the human mind. It has to change, to cast its skin, its shell. In order to evolve it has to abandon many preconceived ideas, and even categories that used to structure its thought.

The relation of the health system to Non-Knowledge

     Yet no human institution has the flexibility that the human mind shows. Ideas and categories are embodied in social structures with all the weight of financial and political constraints. Money and power do not change hands easily. And our health system does not escape them. It has its institutionalized categories.

     In order to classify the patients, anatomy came up with unquestionable labels such as "heart", "lungs", "liver", etc., which led to structural hierarchies such as cardiology, pneumology, hepatology, etc.. More generally, illnesses are classified in what we call "nosological categories", the list of which, according to certain figures of authority, would be definitively closed. Such classification helps categorizing the problems and grappling, in each discipline, with what we know we do not know. That is how the health system handles Non-Knowledge. And how else could we do ? Can we blame the administrators for not being magicians who would guess what nobody knows yet and who would organize beforehand a space for the unknown ? The health system can only handle the research that falls into its categories.

The history of posturology

     Yet when research does not follow beaten tracks, it encounters a wide administrative vacuum which nobody administers - the only statutory texts it will meet keep being questioned. This is the story, for instance, of posturology. It deserves to be told, because it is quite exemplary and hardly believable...

     It took a very long time to researchers to answer the question so beautifully expressed by Charles Bell in 1837 : "How does a man maintain a standing or bending posture against the wind that blows on him? He obviously has a sense through which he knows his body's bending and he has the ability to readjust it and to rectify any deviation from the vertical. What sense is that?"

     A hundred and sixty years later we do know. We do not know everything, of course. Yet we know enough to understand why some patients - the so-called "functionals" - have difficulties in standing up, and we even manage to relieve some of them thanks to our knowledge.

     But many changes of problematics occured during that history! In Charles Bell's time the "senses" were fashionable. So the XIXth century researchers started looking for a postural sense : "What sense is that?". Now, in their confrontation to reality, they found out that several senses were implied in the control of posture : the eye, the inner ear, the muscular sense of the paravertebral muscles and of the ocular motor muscles... which confused everyone. No synthesis of all those discoveries was made at anytime, and the reason is simple : the imagined logic was not the real logic of postural control, and in order to understand it a new way of thinking was needed.

     During about fifty years, the new concept that would allow to think postural control was waited for - fifty years during which only one sense was priviledged, that of the inner ear : the vestibule. When at last the notions of controled systems and of cybernetics appeared, everything seemed to become clear : postural control is a control that integrates data from very numerous sensors in order to correct any corporal deviation from the vertical.

     Everything was limpid... except the disorders of the postural system. They did not fit into the recognized schemes because they did not correspond to any lesion, at least to any lesion proportional to the observed troubles. So really, what kind of abstract chimeras did we want to look after, if they did not rest on anything solid or visible ? The medical logic demands that at the basis of all complaint there is a cause, and a cause that can be displayed - a germ, a virus, a toxin, etc., or at least anatomical, real, visible damages. Yet in the case of disorders of the postural control there are none of these. Just a puzzling interrogation that questions the common logic, because the real facts are there indeed. There are crowds of patients who have problems in standing up, either because they stagger, or because they suffer in that position, yet we do not know more than the fact that their postural system behaves abnormally. But what is the cause ?

     The answer came from the mathematicians. They showed the strange behaviour of normal looking functions, like the logistic function - if a simple epsilon is modified in the parameters of the equation, its solutions, either linear or sinusoidal, become chaotic. An epsilon, a simple nothing, is enough to change dramatically the behaviour of the system. We were far from imagining such eccentricities in mathematical equations. It is strange yet this is the way it is.

     The meteorologists have understood, well before doctors, that those theories of chaos account for the phenomena they observe - "A butterfly flaps its wings in Brazil and a tornado sets off in Texas" says Lorenz. Yet today doctors know that those theories also apply to the postural system - it has been proved that this system behaves like a non-linear dynamic system.The disorders of the postural system are not caused by a lesion, but by the logical structure of this metastable system that a mere nothing can turn into a chaotic behaviour. A dead leave falls on the surface of the stream and the stationary pattern of the waves is profoundly and durably transformed. In order to understand postural disorders, it simply takes to change our logic, to adapt oneself to the logic of reality.

     A hundred and fifty years after Charles Bell's question, the scientific corpus of posturology is therefore constituted, dense, structured, documented with thousands of works realized in many different countries : Holland, France, Japan, Germany, England, Italy, Portugal, Belgium, Canada, unfortunately scarcely in the USA! Knowledge is there... but it is kept outside our health system because it has developed outside the categories of that system. Doctors are trained to take care of disorders of the eyes, the ears, the rachis, etc., but nobody is supposed to take care of the disorders of man standing up. Worse than that, nobody is in charge of solving that problem. In 1997, a hundred and sixty years after the beginnings of posturological research, postural patients are still excluded from the health system.

The outcast of the health system

     That expression, the outcast of the health system, could appear as a mere formula, a literary effect, if we did not take time to speak about them, at least of some of them. I met some when, as an occupational doctor, I visited the building sites of the Paris area. They were deeply hurt by the injustice of their situation.

     It was always the same story : an accident during which a violent shock on the head had caused a loss of consciousness, a stay at the hospital where they had quickly awaken, one or two weeks of convalescence - to make it short, what doctors call a minor closed (the skull not being fractured) cranial trauma.

     Their true problems began when they got back to work, because that kind of trauma leaves after-effects that are specially awkward in their profession: sensations of vertigo. During the medical visit of their returning to work, they naturally evoked them with their occupational doctor - the consequence was direct and inescapable : no occupational doctor would ever registrate any worker showing balance disorders as fit for working high above the level of the ground.

     But what is to be done with a bricklayer who could only work on the ground ? The firm keeps him, yet with a loss of salary corresponding to the loss of services - but isn't it quite normal, considering that all is organized so by the health system, which provides indemnities for the injured, while the firm pays contributions to the industrial accidents fund ?

     Unfortunately, such sensations of vertigo are symptomatic of a postural disorder, that is to say of a disorder unknown to the health system, which does not induce visible lesions and does not modify the known examinations... How could the social security doctor in charge of defining those patients' indemnities take into account the sensations of vertigo, that do not correspond to anything in the system ? A 2% rate is granted, a little bit like a pretium doloris, whereas the loss of salary is often much more important : some pay slips that I saw showed a 30% reduction.

     How, in those conditions, could the workers not feel that they are misunderstood by doctors, and victims of an injustice ? So some of them become vindictive : they demand experts'reports and other experts'reports, they accumulate certificates of all kinds, they keep fighting back, and so much so that they would nearly induce medical experts to think that cranial patients are rebels. It would be quite wrong, as most of the cranial patients we have seen were resigned and silent as to their exclusion from the health system.

     A survey led by Doctor Amphoux and about fourty occupational doctors on a sample of 10,000 subjects among the 300,000 building workers of the Paris area, showed that 4% of them had suffered from such after-effects of a cranial trauma. At that time, we could therefore estimate that the number of outcast of the health system, for that only disorder and among that only population, was superior to 10,000. It is not a small problem, but how can we solve it ?

What is to be done ?

     Even if the final solution is administrative, we cannot ask the administration to take the initiative, or we would be asking it to unduly take position on the truth of the matter. No human administration can take the right to decide what is true and what is not. In medicine like anywhere else the truth criterium is not authority but the gradual change of obviousness throughout self-consciousness. That principle has not escaped the medical association, which has written in its code the following democratic assertion : "Every doctor takes part in the assessment of professional practices".

     But that recognition of truth throughout self-consciousness is not immediate. Before a truth can be recognized, it first has to be known... The role of the media in handling the recognition of truth is capital. We can regret, on that matter, the unquestionable timidity of journalists - they obviously do not like to speak of new medical subjects. As far as their career is concerned they certainly are right. However their silence does not help the debate to open. Yet we are all concerned by health problems, and there is no reason why the discussion should remain limited to a small group. Specialisations are numerous indeed, even among doctors, yet the lack of specialisation does not prevent from understanding the question and echoing it in order to broaden the debate. How could our fellow citizens not be shocked to learn that hundreds of thousands among them run the risk of keeping excluded from the health system because of administrative slowness ?

     Because slowness is the problem. The principle of major logic wonderfully glide way above our heads, it does not give any precise end to the gradual change of obviousness. We are the only judges. And we all remember recent resorts to the court in order to decide between different estimations of the maturity of the gradual change of obviousness. In the case of posturology, the disorders fortunately do not lead to death. We have no reason to resort to the judges... but why not to collective consciousness, since the health system is radically unable to take up the challenge of a complete handling of Non-Knowledge ?