The “Disease” Concept
When humans address their own being ill or that of others in an effort to understand or influence it, their attitude to being ill changes. In addition to initially passively allowing the peril of being ill happen to them, an active, investigating attitude emerges as an attempt to regain control of the situation. In so doing the need arises for a language, a framework of concepts, and a conceptualization. The concept which epitomizes access to reflection and scientific thought about being ill is “disease.” Thus the ill person is transformed from somebody who has a defect to somebody who has gained an attribute, namely, the disease. The concept of illness initially derived its significance in particular from the fact that all sorts of signs of illness could be registered and related to each other using this concept. In the large realm of being ill it became possible to isolate diseases which apparently differed from each other. Historically the description and discovery of different diseases preceded the formation of a comprehensive scientific concept of disease. The realization that there were different diseases led to the distinction of increasingly more of them.
Disease is a concept. This implies that disease is not the same as an observed phenomenon of illness or clinical symptom. The concept of disease is an abstraction of that which is reported and observed. An attempt is made to discover structure, relationships, and patterns in the facts. This has the benefit that the same pattern can be found in other ill people, giving rise to the insight that they are suffering from the same disease, or perhaps a disease that resembles it but is also different in some way. The disease concept allows the phenomena to be arranged in a pattern or at least allows such a pattern to be found, and in addition allows important and unimportant factors to be separated.
The disease concept also implies, as was elaborated on regarding being ill, that there is a process. Illness originates quickly, slowly, or creepingly. It progresses in a certain way towards a final phase which may be full recovery, a new equilibrium due to permanent impairment, or death. By conceptualizing these complex events the possibility is created to study them. This is done from three angles: a. investigation of the image and progress of the disease; b. asking what causes the disease, where does it come from, and of what significance it is; c. determining whether or not the process can be influenced. So the disease concept provides a thought model, the disease model, that makes the formerly vague and ominous events of being ill available for investigation and attempts at influencing it.
Thus, the disease concept encompasses a theory about being ill. It is not only a description of what is happening, but also a perspective and interpretation, and therefore an explanation of the phenomena, imparting significance to them. This theory can differ rather much in degree of abstraction and complexity in respect of different illnesses. The more insight is gained into the relationship between etiologic and pathogenic factors on the one hand, and form of occurrence, prognosis, final phase, and measure of possible intervention through treatment on the other, the more the complexity of a particular disease concept increases. If, on the contrary, only a symptom or syndrome of a disease is known, the degree of abstraction is relatively minor. The degree of abstraction of the disease concept itself is larger than the degree of abstraction of different illnesses as a concept. The relationship between the disease concept in general and the different individual illnesses can be considered a meta-relationship.
One result is that certain diseases seem to be not much more than observed phenomena whereas others represent a highly complex concept. Particularly regarding those illnesses that can be relatively simply conceptualized there is a tendency to reify the disease concept.
If illness is a theory about being ill, was this theory shaped in different ways, and are there different disease concepts? This question can be answered affirmatively. For instance, since the competing medical schools of Cos en Cnidus in the fourth century before Christ there are two different disease concepts which, with their variations, continue turning up throughout the history of medicine to this day.
The Cnidus disease concept consists of the idea that illnesses can be viewed as separate entities. The illness-entity is an independent entity that is so-to-speak planted into people. The phenomena and progress are entirely dependent on the nature of this “implanted parasite.” The disease leads a more or less independent existence in people’s lives and possesses them. In this sense, disease is comparable to a demon that landed in the person. This concept of illness, which is called the ontological or empirical disease concept, is used when speaking of the “classic image” of a certain disease or of “pathognomonic phenomena” as phenomena that render assurance about the existence of a certain illness.
This disease concept in its pure form has been abandoned, among other reasons, because the idea that there are specific explanations for all forms of illness appeared untenable. However, if science is considered not only a matter of object and method of research, but also the way the obtained knowledge is arranged, then it can be said that the typical patterns of phenomena and events of disease form the bases of arranging them in medical textbooks and manuals. Not the ill people but the illness forms the point of departure in the assumption that disease can be isolated from its “host.”
Contrarily, the Cos disease concept considers illness as an aberration from that which is normal. Health is viewed as a harmonious equilibrium and disease as a disturbance thereof. In 1847 Virchow formulated it this way: “…dasz Krankheiten nichts für sich Bestehendes, in sich Abgeschlossenes, keine autonomischen Organismen, keine in den Körper eingedrungene Wesen, noch auf ihm wurzelnde Parasiten sind, sondern dasz sie nur den Ablauf der Lebenserscheinungen unter veränderten Bedingungen darstellen…” […diseases are not isolated phenomena, not autonomic organisms, not beings that have penetrated into the body, nor are they invading parasites, but they are a certain way in which living beings react to changed circumstances..…]
Gradually this model, later called the physiological disease concept, was expanded. Cohen puts it this way: “a. Disease indicates deviations from the normal – these are its symptoms and signs; b. symptoms and signs are commonly found to recur in constant patterns; these are “syndromes” or ‘symptom-complexes’; c. these syndromes always indicate one or more of three aspects of disease, 1. its site 2. associated function disturbances 3. causative factors in terms of (1) morbid anatomy, physiology and psychology (2) ætiology”. He adds, “It is this concept which should dominate our teaching and our approach to medicine.”
The existence of different concepts of disease illustrates that illness is not a fact or empirical factor but an interpretation of facts and factors. So the question whether illness exists is also not a question about empirical factors but about the reality value and/or validity of a concept. This is particularly important because a frequently used concept easily turns into a thing or fact. Reification of the concept of disease has not a few consequences. I will return to this later, among other places, in 2.4.
Every conceptualization influences the way in which the related phenomena are viewed. The question is, does the disease concept also influence the way an illness and being ill is viewed by those who maintain the particular concept? An answer can be found by comparing the description of being ill in 2.1 and Cohen’s description – a description which is generally accepted nowadays.
In 2.1 being ill was among other ways described as undesirable and ominous; healthy as desirable and good. The concepts disease and health clearly constitute a value judgment that cannot be found in Cohen’s description. Transcultural differences illustrate that this value judgment is instrumental in interpreting certain phenomena as abnormal or ill. King mentions the example of women in the higher classes in China whose feet were tied in such a way as to cause pain, dysfunction, and malformation. Yet they were not considered to be suffering from a disease. Likewise in China of yore adiposity was a symbol of affluence while in today’s western culture we consider it an illness. All sorts of examples could be added such as cosmetic interventions that we would consider disfiguring, female genital alterations that are considered essential in certain African tribes, and more. When somewhere else, or in former times, a phenomenon which we would consider a disease is considered desirable, then there or at that time it is/was not considered a disease. No doubt the converse is true of us to people from other cultures. For King this is a reason to include value judgments prevalent in a particular culture in his description of illness in addition to criteria as pain, dysfunction, and abnormality.
A second noteworthy difference is that subjective indisposition, for which the word suffering was used, does not occur in Cohen’s description. Thus to the afflicted person the most important criterion of illness is lacking from his definition of disease.
These two differences indicate that there has been a shift in attention among those who concern themselves with disease from the subjective experience of illness to discernible clinical symptoms and pathological manifestations. Advances in scientific research and rational thought diverted attention from the irrational and emotional aspect of being ill. Medicine as an applied science and form of assistance can only exist in the context of the positive value that man ascribes to health and the negative value of being ill.
Due to the absence of this element of value and subjective suffering in the description of disease, that with which the physician concerns himself, namely disease, loses its connection with the patient’s experience when he is ill. Therefore a shadow is cast on the ethical foundation of medical treatment. A certain estrangement has come into the relationship. The physician takes it for granted that someone who has a disease wishes to rid himself of it at whatever cost. By that I mean that the value judgment “illness is bad” is turned into a law: “Illness must be eradicated wherever it is found.”
Physicians often cannot imagine that someone may differ on that and allow their patients little opportunity for their own thoughts and decisions. Many physicians cannot imagine that a patient might wish to refuse a certain treatment or operation and therefore they forget to ask. The result may be misunderstanding, dissatisfaction, and suffering. When reading Der Zauberberg by Thomas Mann one will be impressed by the ease with which physicians in the first years of the twentieth century accepted that their patients made different decisions than those recommended by their doctors, and how self-evident it was in those days that people must determine their own destiny. This realization seems largely lost today.
There are other conceptualizations of disease in addition to the above. Some conform more readily to the “ill” concept as described in 2.1 than to the biomedical concept of illness.
There is, for instance, the holistic disease concept with its variations, in which man is viewed as more than the sum total of his parts. The entire person in his entire environment should be investigated. Man should not be reduced to bodily, mental, or social factors without taking into account the significance of these factors for the totality.
Related to this is the ecological concept of illness,which views life as based on maintenance of a dynamic equilibrium with the environment at all sorts of levels, which can be particularly significant for prevention.
A relatively recent, and I believe promising, development in the conceptualization of disease is arising from general system theory. It was elaborated upon in the United States by Engel and Lipowski among others, and in the Netherlands discussed regarding psychiatry by Lit, Milders, and Van Tilburg. According to Neill this theory was already anticipated by Adolf Meyer’s psychobiology in the first half of the twentieth century . Scheflen applies its principles to schizophrenia.
Although a thorough discussion of these concepts is beyond the scope of this book, I would like to briefly expand on this last concept, which is called the biopsychosocial disease concept, because I wish to use it shortly.
In General Systems Theory (GST), “system” is a core concept. When a system is defined as an organized collection of interrelated components that form a totality, then systems can be found everywhere in nature among inanimate as well as among living things. These systems appear to be arranged hierarchically, that is to say, that each system in turn consists of smaller systems, and constitutes a part of more encompassing systems. One of the most important properties of all these systems is their isomorphism. All these systems have a number of structural properties in common. An example of such in life is the openness of the system. That is the property of interaction between the system and the environment. Also, open systems are self-maintaining, which means a dynamic equilibrium with the surroundings (“steady state”). In addition to this “adaptive stability” there is an “adaptive self-organization,” which is the capacity to adapt to changes in the environment by changing the own structure or function. This can be described as well as: the capacity to accumulate information, organization, and complexity.
When it is assumed that an individual person is such a system then it can be posited that this system is composed of several decreasingly complex subsystems, for example: organ systems > organs > cells. However, man also constitutes part of higher, more complex systems, such as the family, a profession, and society. Reality can be viewed in its entirety as one huge system. Each system is more than the sum total of its compositional parts.
Due to isomorphism systems differ from each other only in the complexity of their organization, which creates the possibility of relating findings at a certain level with findings at other levels.
In the framework of GST, illness can now be described as a shortcoming in one or more of an individual’s system properties. This shortcoming can be described at different levels. Scheflen describes schizophrenia at eight different levels. As to man the biological, including the physicochemical, the psychical, and the social levels are most relevant in respect of illness, we speak of the biopsychosocial concept of illness. This biopsychosocial disease concept is clearly related to holism.
The biopsychosocial disease concept and its systematic arrangement, its isomorphism, and its possibilities for systematic description of the complex events of being ill at different levels, may be the most promising disease concept at this time. Therefore below I will compare it to the biomedical disease concept that Szasz uses as a basis for his theory.
By now it is clear that if the term “ill” is described as in 2.1, the biomedical disease concept cannot be applied to it without great effort. Of the three described phenomena, only bodily abnormality can by accommodated by this concept of illness. Suffering and dysfunction do not fit in.
The materialistic, biomedical concept of illness actually recognizes only one element in the network of relationships that is meant by the word illness, namely physical aberration. One could even go as far as to posit that the biomedical disease concept cannot literally be a concept of illness because in it the conceptualization as it is formed by the word illness is short-circuited. It is limited to the notion that bodily aberrations exist which have causes and can be treated. That would mean not only that mental illness does not exist, but also that illness on the whole does not exist, or in any case has become superfluous as a concept. To me it seems more correct to speak of a disease concept characterized by its strong reduction with heavy emphasis on things and facts.
The biomedical disease concept fails to include the significance of what ill people themselves and those around them experience. However, we can use the biopsychosocial disease concept without any problem as it is a comprehensive concept. It accommodates humans as experiential and behavioral beings at the center of their social network and as co-carriers of their culture, as well as biological organisms and physicochemical “machines.” In other words, the biopsychosocial disease concept can be meaningful to professionals as well as to “lay” people.
Table of Contents