- Email: [email protected]
Health promotion and clinical dialogue
ELSEVIER
Patient Educationand Counseling25 (1995)247-256
Health promotion and clinical dialogue Olle W. Hellstrijm Department
of Health and Society, Lintiping
University,
Linkijping,
Sweden
Received30 November1994;accepted2 April 1995
Abstract Clinical medicine would gain from a discussion of the significance of health promotion. Some central concepts are discussed: the diagnostic process; disease prevention vs. health promotion; the practical importance of the understanding of the difference between the 2 concepts health and absence-of-disease. The concept of health catches the intra-personal level, the undisrupted self, whereas absence of disease concerns the proper functioning of the organism, the human biology. By means of comparing 2 diagnoses, multiple sclerosis (MS) and fibromyagia syndrome (FS), it is argued that there are diagnoses of at least 2 distinct kinds. The diagnosis of MS is similar to a scientific discovery, whereas the diagnosis of FS is constructed more like criminal law. Consequently, diagnosis-based disease prevention and health promotion have to comply with a wide range of reality. Finally, clinical dialogue is pointed out as a method that successfullycombines diagnostic, preventive and promotive efforts, as well as clinical care and cure. &~wo~G!s: Diagnostic process; Fibromyalgia syndrome; Clinical dialoguel; Clinical health promotion; Disease prevention; Patient education
1. Introduction It is the task of medicine to support sick people, to alleviate, cure and comfort, and to acquire an understanding of different illnesses and diseases, so that they can be better controlled and at best prevented. People’s risk of being afflicted with disease can be reduced through their learning to avoid situations that cause disease. Health education has to do with teaching people successful health behaviour, whereas patient education refers to the health personnel’s education of those who have reached the status of patients. Then
one of the goals of practical medicine is to contribute to the reduction of the effects of the patients’ diseases and make it easier for the patients to regain their health. The main purpose of this paper is to shed light on issues and useful literature relevant to health promotion by means of health education and patient education. Another purpose is to convey thoughts nourished for 2 decades, refined through reading and reflecting, hoping to be thereby confirmed as someone whose struggle is not meaningless. Why should family doctors spend their time
0738-3991/95/$09.50 Q 1995ElsevierScienceIreland Ltd. All rights reserved. SSDZ 0738-3991(95)00802-7
248
0. W Helistriim /Patient Educ. Couns. 25 (1995) 247-256
trying to promote health? Are there some implicit reasons for the enterprise of health promotion other than the ones that are usually thought to lie behind doctors’ involvement? Can e.g. fibromyalgia syndrome (FS), multiple sclerosis (MS), lung cancer and myocardial infarction be prevented? Are doctors sometimes involved in disease prevention although claiming that they take part in health promotion? The essay lays stress on the concepts of health and disease, different kinds of health problems, how and when these can be subjected to health promotion. Two relatively unusual concepts within medicine are focused upon: (a) health as an undisrupted self-world relationship and (b) clinical dialogue, as the enterprise of choice when it comes to health promotion as a naturally integrated part of encounters with patients. 2. Health, heal, wholly relationship
undisrupted
self-world
There are good reasons for maintaining a clear distinction between the concepts of health and absence-of-disease. The common implicit view of health as in ‘health care’ is that the main duties of the health staff are to keep people’s illnesses and diseases away, as well as to handle disabilities and impairment of their patients. Therefore, health policy-makers and people in general are prone to hold that health promotion, too, exclusively deals with the prevention of illnesses and diseases within a population. Many authors have devoted time and thought to defining the concept of health. Among them, some [l-8] in opposition to e.g. Boorse [9], share the idea that the concept of health should not rely on the concept of disease. Following Toombs [lo], complete health can be seen as an undi.+ rupted self-world relationship, an explicitly holistic [l] view of health - the individual builds his own exclusive and subjective world-picture. To assist a person to re-establish his health is first of all to listen carefully, to hear and to be there. None but he himself can reconstruct his wholeness, his undisrupted self. The most self-evident wholeness is that which exists between a mother and her new-born child - paradise on earth. In the ideal
case, the infant being suckled is in total contact with his whole world, enjoying a deliriously pleasurable and unconscious experience of wholeness. To leave this is a part of human growth. Total health in the original sense of completely undisrupted wholeness is never attained again. Being in paradise (in the sense of an undisrupted wholeness) is incompatible with cognitive awareness of where and how one is, and indeed of the fact that one is. (Adam and Eve were the first ones to experience that). Regaining health is a matter of an individual’s own personal will, his capacity and his living conditions as he - and only he - sees them [7]. If, on the other hand, he has got a disease, if his body is out of order, it may often be cured through the intervention of someone with adequate medical knowledge. When it comes to health promotion, doctors can carefully facilitate the individual’s own effort to re-establish a new balance between himself and his experienced world. Health education is not without controversy. Can or should one teach anyone a healthier way of living if he or she has not asked for health information? Let us imagine a person suffering from a disease that compromises his daily life, e.g. diabetes. According to Toombs [lo] the patient tends to gradually adapt to his new situation through not recognizing his dysfunctioning body. If he does, he is at the same time threatened by a picture that tells him about the bodily and other consequences of the disease. To live in an undisrupted relationship to the world is to be unaware of one’s body. When the body works as expected, you never think of it as something apart from yourself. That is at the core of the concept of undisruptedness. The person who is constantly reminded of his disease by ambitious health workers may thus risk feeling worse than the person who is left alone with his disease-conditioned adaptedness. Toombs [lo] touches on this issue indirectly in her book. There is a conflict involved in being educated within a scientific discipline and then using the acquired knowledge in relation to human beings. But the conflict is resolvable. Doctors can reconsider and change their basic instrumental attitude to patients. If not, how could they expect the
0.W. Hellstriim /Patient Educ. Cows. 25 (1995) 247-256
patient to be able to change his own subjective picture of himself and of the world? To put it very simply indeed, the doctor can on the one hand choose to regard the patient as an object upon which to exercise his knowledge, seeing the patient’s body as exposed to external forces some of which tend to give rise to bodily injury, or the doctor can on the other hand choose to regard the patient as a subject, as a person with the ability to see the world in a personally unique, subjective way. In the former case, it is the doctor’s role to identify the forces to which the patient is exposed, to diagnose their effects on the individual level and then to do what he can to mitigate these effects, whilst in the latter case the doctor chooses to encounter the patient in clinical dialogue, striving to adopt such a stance as will make it possible for the patient to rediscover himself without the aid of his individually devised disease-language. In most encounters the doctor should be prepared to adopt (and have the requisite knowledge for adopting) both these attitudes. But when is it appropriate to lay the emphasis on one or the other of the 2 attitudes? And when is it appropriate to channel resources into clinical health promotion in the form of disease prevention, health education or patient education? 3. Two radically different kinds of health problems
Consider the 2 disease conditions MS and FS. Although the aetiology of MS is quite unclear, there is a global agreement among practitioners and researchers that the observable MS symptoms are connected with the sclerotic plaques in the central nervous system. FS is gaining in popularity and is now one of the most common diagnoses in the case of first visits to rheumatological clinics [11,12]. The main symptoms of FS are persistent generalized muscular pain, fatigue, sleep disturbances, and pain and tenderness on palpation at specific tender point sites [131. Commonly used diagnostic criteria stem from 1990 [14]. The cause or causes of the main characteristics of FS are by no means unambiguously identified [15]. In his study Gee1 [16] concludes: ‘The evidence for involvement of muscle pathophysi-
249
ology as a primary mechanism mediating the onset of symptoms is not compelling.’ In a 2-part review article (containing 195 references) Boissevain and McCain [l&16] find very few convincing results that make FS a well-defined disease entity. FS would maybe gain from being subjected to radically new efforts at explanation. Do patients, for instance, unwittingly use FS to reduce their gnawing feeling of not being what they wish to be? Do doctors likewise reduce their frustrating experience of not being as able as they would like themselves to be through leaning on self-deceptive ‘scientific’ inventions? Would it be possible to differentiate between patients who really are afflicted with disease and patients who, for intrapersonal or existential reasons, need their experiences of illness? If so, could phenomenologially oriented clinical dialogues with FS patients help doctors to understand both them and other patients as well as themselves and their own tendency to identify disease entities [19] rather than actively getting close to the suffering person? These more or less rhetorical questions give rise to a hypothesis: Inquiring into the issue of FS and the way FS patients actually are met can help doctors to improve their understanding of communication and to become skilled dialogue partners, no matter what reason the patient has for coming. MS is assumed to be by nature a ‘biological’ deviation, while FS is proposed to be the result of the doctors’ attempts to reply to certain patients’ need to escape their subjective picture of themselves and their relation to the world. When, according to Toombs [lo], a patient realizes the early effects of an organic disorder, he unconsciously reorganizes his self-body relationship. The failing body is not any longer an- obvious part of himself. He does not willingly see that the failing body is his body. When it comes to FS patients they rather seem to cling to and gladly present their feeling that their bodies are completely dysfunctioning. They usually do not give the impression that they are trying to give up their body. 3.1. Multiple sclerosis and clinical dialogue Toombs [lo] - who herself suffers from MS - identifies 4 phases of development of the per-
250
0. W. Hellstrkn /Patient Educ. Cows. 25 (1995) 247-256
sonal experience of her bodily disorder: pre-reflective sensory experience, suffered illness, disease and disease state. This she believes to be an adaptive process that makes her life as an MS patient easier. She neutralises or encapsulates that which no longer functions as it used to. Thus, she is able to live her life relatively unaffected by her non-functioning body - at least psychologically. (When sound and healthy she e.g. used to talk about ‘her’ legs; now she finds herself referring to them as ‘these’ legs). The overall aim of Toombs’s book is to clarify the theoretical basis of the fundamentally different views of disease that the doctor and patient have when it comes to seeing the disease that is the subject of their dialogue. The attempts at dialogue often lead to misunderstanding. The patient has his genuinely unique life-history and his personal history of illness. Toombs shows how the patient gradually creates new meaning in order to be able to tolerate the body which functions worse and worse. The doctor is socialised into a professional community in which the understanding of diseases is developed in an intersubjective medico-social culture. It is the shared tacit context of used concepts that gives doctors their meaning as health workers. Thus, to say the right word is to recall a nourishing world of meaning and coherence [20]. In order to keep being confirmed as part of a meaningful world the doctor uses his concepts in a congruent, consistent, coherent, self-evident way. In this conceptual context, there is no room for private interpretations of the patient’s messages, nor for his lay language. Is it possible to bring these 2 pictures of disease into line with each other in such a way as to enable the doctor and patient to engage in genuine dialogue? Toombs’s analysis of her own process of adapting to her dysfunctioning body may help us to see clearly the doctor’s relationship to his patient. 3.2. Fibromyalgia syndrome and clinical dialogue
Human the doctor something tened to.
dialogue takes at least 2 persons, and his patient. They both want to and are hoping to be heard and There certainly are persons who
e.g. say lislive
with relatively high self-demands. When unsuccessful in reaching their goals, they tend rather to accuse themselves than to blame others. Maybe the FS patient belongs to this group [2]. He experiences himself as afflicted with a disease, involving e.g. fatigue, pain and bodily dysfunctions - this unwittingly in order to, hypothetically, dismiss a still worse self-image on the intrapersonal level. Theoretically, human beings exist on 3 different levels. On the ‘biological’ or extrapersonal level the human being is an organism existing in relation to a material reality and thus exposed to mechanical disturbances of equilibrium. On the psychological or interpersonal level the human being acts as a reflecting, symbol-nourished being. On the spiritual, existential or intrapersonal level the human being exists in relation to himself [21]. At his disposal are his thoughts, his language and his capacity to look at himself. His relation and attitude to himself are also exposed to disturbances. A person who e.g. does not examine the motives, intentions and purposes underlying his own actions will neither be able to develop his own experiential capacity nor his rational, purposeful pattern of action. On the other hand, the person who is too self-critical will suffer a paralysis, be unable to act. What, then, does a person do who is overly critical of himself and of his capacity and who at the same time feels a responsibility for fulfilling his undertakings? Perhaps he tries to escape his personal responsibility for not being as able as he would like to be. Probably a very common way of trying to solve such a dilemma is to imagine oneself afflicted with illness. If this assumption is correct, doctors risk encountering patients who impel themselves to be physically ill so as not to founder as persons. Such a patient forces himself to feel that he does not function as a body in order not to have to feel incapacitated in the face of his own - often unrealistic - expectations [2]. ‘If I hadn’t been ill, of course I’d’ve been able to reach my goal.’ What stance, then, does the doctor himself with his own sometimes high demands upon himself with regard to helping sick people - adopt when he encounters patients whose goal is to
0.W
Hellstrlim
/Patient
Educ.
have it confirmed that they are ill at the same time as they give the impression of wanting to be freed from their sufferings? Misunderstanding is ready and waiting. Does the doctor act in essentially the same way as the patient? The doctor maybe escapes his feeling of inadequacy by choosing to affix one or other name to the patient’s condition. This name - a diagnosis - gives the doctor access to a programme of action, thereby reducing his confusion. 4. The diagnosis saves patient and doctor from self-criticism Whitbeck [22] writes that the common definition of diagnosis as the determination of the nature of a disease is misleading. She continues: ‘... diagnosis is properly understood as integrally related to the rest of clinical reasoning rather than as a task that is the central one in clinical reasoning and to which all other problem solving is subsidiary.’ The doctor’s act of naming what he perceives, is to some extent a response to an unacknowledged need of escaping his unbearable self-criticism. To put a ‘scientific’ name on what confuses him as a trained professional helps him to reduce his bewilderment. Concomitantly he, too, relieves his patient from the threatening meaninglessness: to get a name on some significant part of one’s life situation is to be confirmed as someone who really belongs to a human world of meaning. This proposed adaptive strategy to resolve a threatening chaotic life situation is applicable both to doctors and to their patients as well as to infants and growing children [23]. The assertions concerning the connections between the signs the doctor sees as illness and a corresponding organic basis rest upon a view of man and a view of illness and medical knowledge - both views should be made accessible to criticism. To doctors, the patient can be seen as a person whose chief goal is to make himself understood. This is his main reason for expressing himself. He is obliged to make use of his body in order to communicate with the world around him [23]. As a biological-technical system the human body is at the same time exposed to injury. What
Couns.
25 (1995)
247-2.56
251
in the first place makes the encounter between doctor and patient ambiguous is that the signs of disease in the individual are often difficult to distinguish from what are simply experienced and expressed symptoms, i.e. the illness aspect [1,2]. Why do healthy persons use symptoms of illness in order to put their existence into some sort of shape? In order to answer we had better investigate what happens during the very first part of a person’s life. When the human infant develops from being an organic part of his mother into becoming a member of a world of meaning from a materialistic dependency into a symbolic or communicative one - he incessantly needs to be confirmed by others [23]. If not, he will vanish or dissolve as a specific human being. His very being human rests on his ability to utilize and interpret the meaning of verbally or otherwise conveyed human messages. Hoping to be understood, he keeps expressing himself. The confirmed ability to convey meaning-evoking messages to others is that which above all nourishes him as a dweller in a world of meaning. If on the other hand the person mistrusts his personal capacity to make himself understood, he needs first of all to escape the feeling that he himself is responsible. There comes the illness into the picture, the subjective aspect of having (being afflicted with) a disease. The illness fulfills a multifold purpose - firstly it allows the patient to regard himself as someone who is not responsible for his incapacity, in as much as he is afflicted with disease. Secondly, the illness diverts his thoughts from things that could remind him of his otherwise experienced incapacity, and thirdly, it helps him to keep in touch with meaning [20] in as much as both doctor and relatives understand the illness in an expected way [lo]. 5. Patient education and health education The key question in any clinical encounter that aims at health promotion is whether doctors really are able to influence their patients to change health behaviour. The Norwegian sociologist Thomas Mathiesen [24] has studied the generally well-known experience that persons and institutions only unwillingly change their once adopted
252
0. W. Helktiim
/Patient Educ. Coum. 25 (1995) 247-256
opinions and action programmes. They would rather defend the status quo. In short, Mathiesen says that if one manages to present an alternative message in an openly proposed, ‘suggested’ and ‘foreign’ way, it cannot be either overlooked as of no importance or disregarded as being irrelevant
WI. If a patient is to be induced to change attitudes, it is important that the doctor has a command of the art of medical dialogue. If the 2 of them do not speak the same language, the encounter cannot become the basis of any change at all. One important quality in this respect is the process of understanding. To the philosopher Hans-Georg Gadamer [25], the essence of understanding is a constant revision of prejudices. A doctor who sees the significance of genuine dialogue puts his general theory about ill patients within brackets and lets his dialogue partner’s words and other types of message refer to the personal life context of his patient and not to a general theory. The patient then feels confidence in his doctor and tells him about such personal issues as he most probably would not have mentioned to a conventionally working doctor. The 2 rely on each other and a genuine dialogue is taking shape. Toombs [lo], Baron [19], and others stress the importance of the dialogue and the fact that the doctor should adjust to the patient’s view of illness, his subjective, experiential picture of what it is to be ill. Barnlund [26]: ‘It is tempting in the daily clash of words to forget that it is the perceived world - not the real world - that we talk about, argue about, cry about’. In order to accept a modification of his everyday living habits, the patient first of all must accept that he has got some disorder that is threatening his future health. According to Mathiesen’s theory of action-research [24], the doctor should not disclose the full consequences of a certain health behaviour proposal when he addresses e.g. diabetics and deals with patient education that aims to stop smoking and thereby to reduce the risk of e.g. early blindness. Toombs’s phenomenological investigation of her own MS indicates that the chronically ill person often de-
velops a relationship to his disease which is aimed at making himself unaware of the dysfunctioning parts of his body. Why should he bother about listening to those who fuss about risks that he does not run? Again this problem of patient education may be solved through developing relationships to patients that are based on genuine clinical dialogue. Once the doctor has acquired skill in encountering his patient as a dialogue partner whose genuine illness experience he actually cannot do without, the chances of being able to establish a health-liberating atmosphere increase accordingly. The patient cannot easily free himself from ideas that are elaborated in a dialogue characterised by the attempt to achieve mutual understanding. Let us now return to MS and FS and see how patient education and health education apply to both diseases. We recall that MS is assumed to be due to a technical disturbance on the biological level, whereas FS is hypothesized to be the result of years of misunderstanding, where long-lasting static muscular tension gives rise to pathologic pain perception, i.e. a disturbance originally on the intrapersonal level of human life, in turn leading to bodily dysfunction. His self-demands force the patient to come to terms with his disapproval of himself. He cannot use ordinary words, because they threaten to tell him that he is as bad as he fears. The muscular tension of the early stage of FS may be understood as a primitive and ambivalent language designed to have the patient confirmed as someone who is ill (and thus ‘nonresponsible’ in respect of the experienced situation) in order not to come close to his subjectively perceived threatening guilt and self-condemnation. The situation being so perceived, the doctor can respond with a willingness to see presented symptoms as personal messages and not as signs of disease. Such a response may help the patient to leave his primitive, ambivalent, less discursive language, based on symptoms like muscular tension, tiredness and bowel dysfunction, and enter into a genuine human dialogue. The comparison between MS and FS lacks empirically based scientific proof. Nevertheless, it
0.W HelLFtriim /Patient Educ. Couns. 25 (1995) 247-256
may be useful as a point of departure when discussing health promotion and dialogue. Vast experience tells doctors that there are many patients who resist almost any health-promotive efforts as well as medical care and cure. Often strong unconscious motives and forces contribute to the patients’ ‘choice’ of the body-expressions. Then a simple (conscious) dialogue is not enough. It may even provoke and insult the patient. 6. Health promotion
and clinical dialogue
A woman patient was seen by her doctor for 10 years. Five years ago he lost contact with her. Now she has received the diagnosis FS - and so has her daughter. Is FS a hereditary disease? Is it transmitted in some hitherto unknown manner? Would preventive measures have helped the 2 women not to develop their syndromes? These questions are at the core of the issues of disease prevention and health promotion. Still they would hardly be relevant in connection with MS. Firstly MS is proposed to be representative for a group of diseases; the health-promotive efforts concerning this group require a quite specific dialogue skill, namely a professional ability to see the illness as the patient sees it [lo]. Other diseases in the group are diabetes, rheumatoid arthritis, stroke, cancer, etc. If the advice given serves too sharply to remind the sick of the severe complications which are associated with the illness, they have difficulty in maintaining a tacit and relatively well-functioning relation to their non-functioning bodies. They will not appreciate advice which disturbs their new balance. If on the other hand the doctor disregards the effects of the illness, he will probably not be giving the advice which the individual patient can (from the objective point of view) derive satisfaction from. The doctor has to find a balance between on the one hand his desire to understand the patient on the basis of the latter’s subjective picture of his illness, and on the other hand his (the doctor’s) desire to communicate his own subjective picture of the same illness. Both want to go on seeing reality in their habitual way. Since, thus, both
253
patient and doctor would like to cling to their respective subjective pictures of the same illness, the solution lies in finding a common picture. This is best achieved by means of clinical dialogue. Perhaps the mainly natural scientific education the doctor has received is a stumbling-block in this respect. Baron [19]: ‘We seem to have a great deal of difficulty taking seriously any human suffering that cannot be directly related to an anatomical or pathophysiologic derangement.’ Secondly it is proposed that FS be representative for patients whose diseases often may be avoidable. In this group there are the so-called psychosomatic afflictions, e.g. duodenal ulcer, migraine, chest pain, vertigo, tiredness. How then are diagnoses produced? Following Whitbeck [22], the production of a diagnosis concept does not stand in value-free isolation from the subjective mind of the doctors using it, from different more or less irrational considerations, and from prevailing action programmes or remedies at hand. Sometimes the very diagnosis is useful for the patient. Having been afflicted with something that is nameable may partly relieve the person from an unmentionable suffering. Furthermore, it may be of great use for the doctor who feels confused when he has no rational basis for doing what is expected of him as a professional. In the case of FS, both parties seem to gain from the very process of naming. The most important of my points is that FS runs the risk of being used too often in order to solve not necessarily the patient’s problem but the doctor’s If, thirdly, these presented views are plausible, how do doctors prevent FS when confronting a patient who in future runs the risk of being named a bearer of this disease? The question gives rise to a counter-point. How could one systematically prevent something the very existence of which is doubtful? Croft et al. [24] conclude that fibromyalgia ‘does not seem to be a distinct disease entity’. Maybe one should realise that there are diseases of different orders. Some of them can be prevented by means of systematic information (e.g. chronic obstructive lung disease as the effect of smoking). Others can be encountered in close
254
0. K HellstrGm /Patient Educ. Couns. 25 (1995) 247-256
dialogue, in which both partners try to understand the bodily symptom presentation and what it stands for on a beyond-body level. That which is not yet formed is prevented, although neither the patient nor the doctor knows what they have eliminated. What is done in this type of encounter is proposed to be given the name of genuine health promotion. It is grounded on the belief, the practical experience and in fact the scarcely surprising finding, that the life of human beings may be troublesome on the specifically human level just as well as on the levels that we have in common with our fellow mammals. 7. Practice implications Health promotion ought to be illness-orientated, i.e. focused on the experiences of the persons who themselves live with their dysfunctioning bodies. To be successful in health promotion we need general knowledge about that which makes the patient-person ill, not only about the diseases he has. The essay is meant to inspire practitioners to integrate cure and care, to both hear what is said and dare listen to what is not said, i.e. implied through saying something less delicate or perilous. Secondly, it implies the value of integrating disease-oriented efforts and health promotion through practising clinical dialogue. Thirdly, it can inspire general practitioners to integrate illness-orientated research, health care, and health promotion. This increases their abilty to convey to colleagues that which is revealed in the dialogue, when the illness aspect of the patient’s complaint is in focus. How do we early in his FS career assist our patient to abandon his experience of being afflicted with a disease and inspire him to express himself by means of a more constructive language? 8. Conclusion Why don’t the patients do as we tell them? Maybe we do not quite know what we are talking about when we encounter them. The patient tries to convey his subjective experience of being ill,
whereas the doctor hears him talking about his failing body. Compare on the one hand the MS patient who for existential reasons keeps himself unaware of his failing body, and on the other hand the FS patient who for existential reasons maybe ‘clings to his body’ and nourishes a feeling that it is out of order. How do we meet them? The aim of this paper is to raise some basic issues of importance for health education, patient education, health promotion and clinical dialogue through discussing useful literature and how to apply it in practice. The paper is meant to contribute to the development of doctors’ ability to recognize situations in which persons’ presented experiences of illness are, on the one hand, due to the efforts to come to terms with their disrupted self, or, on the other hand, due to their being afflicted with a disease - or both. This competence first of all presupposes a good knowledge of the concepts of health, illness and disease. Whereas the disease state [lo] may best be viewed as a dysfunction on the techno-biological level, the concept of illness and health catches the lived wholeness of the integrated individual self, the intra-personal level. This distinction helps us to see the importance of reconsidering the not infrequent practice of health promotion without regard to whether it addresses illnesses or diseases. If a person keeps his disrupted self masked by means of an experienced illness and the doctor is not competent to see the significance of it, seen as a message, he maybe tries to teach the patient how to come to terms with his symptoms of illness, perceived by the doctor as signs of disease. This doctor mistakes the patient’s expressions for what he expresses, he mistakes the symptoms for the signs. Diagnoses are not value-free. His own desire to be professionally successful may deceive the doctor when perceiving the patient’s symptom presentation. Then the chosen diagnosis does not identity an objective and preexisting reality. The diagnosis is rather an invention that makes useful the means of cure at hand. In medical practice there are situations in which health promotion is a successful and rational enterprise. However, we should be aware of the tendency of doctors, health
0. W Hellstrkn /Patient Educ. Couns. 25 (lW5) 247-256
policy-makers and people in general to prefer the use of the word ‘health instead of ‘absence of disease’ just because of the stronger positive connotation of the former [3]. Maybe the connotation of the word health seduces doctors to overestimate the value of health promotion as compared to illness-orientated practices. A comparison between MS and FS, understood as paradigm cases, is intended to shed light on the idea that there are diagnoses of distinctly different kinds. Some of them, e.g. pernicious anaemia and diabetes have a history very similar to the discovery of new biological species. People suffering from corresponding dysfunction may very well gain from secondary disease prevention as well as health promotion in the form of health education and patient education - if it is performed with sensitivity. The evolution of the other extreme kind of diagnosis, represented by FS, is more similar to the production of e.g. criminal laws. Society forces rules on those individuals whose behaviour is extraordinary. The tacit reason for naming a patient’s presented symptoms FS may be the doctor’s experience that both of them simply gain from it, although they really do not know why. The doctor, too, is relieved through his escaping confusion. Patients belonging to the FS group are not as helped by means of the same kind of health promotion as are the ones of the MS group. Phenomenologically based theories can best help us to understand these patients’ illness experiences. Further reflections on the significance and import of diagnoses of FS type may help doctors to elaborate health-promotive enterprises that are successfully applicable to those patients who need their illnesses in order not to disintegrate as persons. Phenomenological method is promising and can improve further research aiming to understand FS patients and others with illness-orientated self-adaptive modes of being.
255
Society, Linkiiping University, for comments on an earlier version and to The Dalarna Research Institute that partly supported the study. References [l] [2] [3]
[4] [5] [6] [7] [S] [9]
[lo]
[ll] [12] [13] [14]
Acknowledgements
[15]
I am grateful to Jennifer Bullington and Lennart Nordenfelt, Department of Health and
[16]
Hellstrom 0. The importance of a holistic concept of health for health care. Examples from the clinic. Theor Med 1993; 14(4): 325-342. Hellstrom 0. Health promotion in general practice. On meanings and aims in interaction. Em J Public Health 1994; 4: 119-124. Whitbeck C. A Theory of Health. In: Caplan AL, Englehardt HT Jr, McCartney JJ, eds. Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, MA: Addison-Wesley, 1981; 611-626. Nordenfelt L. On the Nature of Health: An action-theoretic approach. Dordrecht, The Netherlands: D Reidel, 1987; 35-104. Nordenfelt L. Concepts of health and their consequences for health care. Theor Med 1993; 14(4): 277-285. Nordenfelt L. On the nature and ethics of health promotion. An attempt at a systematic analysis. Health Care Analysis 1993; l(2): 121-130. Porn I. Health and adaptedness. Theor Med 1993; 14(4): 295-304. Seedhouse D. Health. The Foundations for Achievement. New York Wiley, 1989. Boorse C. On the distinction between disease and illness. In: Caplan AL, Englehardt HT Jr, McCartney JJ eds. Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, MA: Addison-Wesley, 1981; 545-560. Toombs SK. The Meaning of Illness. A Phenomenological Account of the Different Perspectives of Physician and Patient. Dordrecht/Boston/London: Kluwer Academic Publishers, 1992. Croft P, Schollum J, Silman A. Population study of tender point counts and pain as evidence of fibromyalgia. Br Med J 1994; 309: 696-699. Wolfe F. Fibromyalgia. Rheum Dis Clin North Am 1990; 16: 681-698. Henriksson CH. Longterm effects of fibromyalgia on everyday life. Stand J Rheumatol 1994; 23: 36-41. Wolfe F et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia, report from a multicenter committee. Arthritis Rheum 1990; 33: 160-172. Wall PD. The mechanisms of fibromyalgia: a critical essay. In: Vaeroy H, Mersky H eds. Pain Research and Clinical Management, Vol. 6: Progress in Fibromyalgia and Myofascial Pain. Amsterdam: Elsevier, 1993; 53-59. Gee1 SE. The fibromyalgia syndrome: musculoskeltal
0. W Helktim
256
pathophysiology.
Semin Arthritis
/Patient
Educ.
Rheum 1994; 23(5):
347-353.
[17] Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome. I. Medical and pathophysiological aspects. Pain 1991; 45(3): 227-238. [18] Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome. II. Psychological and phenomenological aspects. Pain 1991; 45(3): 239-248.
[19] Baron RI. An introduction to medical phenomenology: I can’t hear you while Pm listening. Ann Intern Med 1985; 103: 606-611. [20] Antonovsky A. Unraveling the Mystery of Health. Jossey-Bass Inc., Publishers, 1987.
Coum
25 (1995)
247-256
[21] Frankl VE. The Doctor and the Soul. New York: Alfred A. Knopf, 1965. [22] Whitbeck C. What is diagnosis? Some critical reflections. Metamedicine 1981; 2: 319-329. [23] Winnicott DW. The Maturational Process and the Facilitating Environment. New York: International Universities Press, Inc., 1984. 1241 Mathiesen T. The politics of abolition. In: Mathiesen T. editor. Scandinavian studies in criminology, Vol. 4. Oslo: Universitetsforlaget/Martin Richardson, 1974: 13-36. [25] Gadamer H-G. Truth and Method. London: Sheed and Ward, 1979. [26] Barnlund DC. The Mystification of Meaning: Doctorpatient encounters. J Med Educ 1976; 51: 716-725.
Patient Educationand Counseling25 (1995)247-256
Health promotion and clinical dialogue Olle W. Hellstrijm Department
of Health and Society, Lintiping
University,
Linkijping,
Sweden
Received30 November1994;accepted2 April 1995
Abstract Clinical medicine would gain from a discussion of the significance of health promotion. Some central concepts are discussed: the diagnostic process; disease prevention vs. health promotion; the practical importance of the understanding of the difference between the 2 concepts health and absence-of-disease. The concept of health catches the intra-personal level, the undisrupted self, whereas absence of disease concerns the proper functioning of the organism, the human biology. By means of comparing 2 diagnoses, multiple sclerosis (MS) and fibromyagia syndrome (FS), it is argued that there are diagnoses of at least 2 distinct kinds. The diagnosis of MS is similar to a scientific discovery, whereas the diagnosis of FS is constructed more like criminal law. Consequently, diagnosis-based disease prevention and health promotion have to comply with a wide range of reality. Finally, clinical dialogue is pointed out as a method that successfullycombines diagnostic, preventive and promotive efforts, as well as clinical care and cure. &~wo~G!s: Diagnostic process; Fibromyalgia syndrome; Clinical dialoguel; Clinical health promotion; Disease prevention; Patient education
1. Introduction It is the task of medicine to support sick people, to alleviate, cure and comfort, and to acquire an understanding of different illnesses and diseases, so that they can be better controlled and at best prevented. People’s risk of being afflicted with disease can be reduced through their learning to avoid situations that cause disease. Health education has to do with teaching people successful health behaviour, whereas patient education refers to the health personnel’s education of those who have reached the status of patients. Then
one of the goals of practical medicine is to contribute to the reduction of the effects of the patients’ diseases and make it easier for the patients to regain their health. The main purpose of this paper is to shed light on issues and useful literature relevant to health promotion by means of health education and patient education. Another purpose is to convey thoughts nourished for 2 decades, refined through reading and reflecting, hoping to be thereby confirmed as someone whose struggle is not meaningless. Why should family doctors spend their time
0738-3991/95/$09.50 Q 1995ElsevierScienceIreland Ltd. All rights reserved. SSDZ 0738-3991(95)00802-7
248
0. W Helistriim /Patient Educ. Couns. 25 (1995) 247-256
trying to promote health? Are there some implicit reasons for the enterprise of health promotion other than the ones that are usually thought to lie behind doctors’ involvement? Can e.g. fibromyalgia syndrome (FS), multiple sclerosis (MS), lung cancer and myocardial infarction be prevented? Are doctors sometimes involved in disease prevention although claiming that they take part in health promotion? The essay lays stress on the concepts of health and disease, different kinds of health problems, how and when these can be subjected to health promotion. Two relatively unusual concepts within medicine are focused upon: (a) health as an undisrupted self-world relationship and (b) clinical dialogue, as the enterprise of choice when it comes to health promotion as a naturally integrated part of encounters with patients. 2. Health, heal, wholly relationship
undisrupted
self-world
There are good reasons for maintaining a clear distinction between the concepts of health and absence-of-disease. The common implicit view of health as in ‘health care’ is that the main duties of the health staff are to keep people’s illnesses and diseases away, as well as to handle disabilities and impairment of their patients. Therefore, health policy-makers and people in general are prone to hold that health promotion, too, exclusively deals with the prevention of illnesses and diseases within a population. Many authors have devoted time and thought to defining the concept of health. Among them, some [l-8] in opposition to e.g. Boorse [9], share the idea that the concept of health should not rely on the concept of disease. Following Toombs [lo], complete health can be seen as an undi.+ rupted self-world relationship, an explicitly holistic [l] view of health - the individual builds his own exclusive and subjective world-picture. To assist a person to re-establish his health is first of all to listen carefully, to hear and to be there. None but he himself can reconstruct his wholeness, his undisrupted self. The most self-evident wholeness is that which exists between a mother and her new-born child - paradise on earth. In the ideal
case, the infant being suckled is in total contact with his whole world, enjoying a deliriously pleasurable and unconscious experience of wholeness. To leave this is a part of human growth. Total health in the original sense of completely undisrupted wholeness is never attained again. Being in paradise (in the sense of an undisrupted wholeness) is incompatible with cognitive awareness of where and how one is, and indeed of the fact that one is. (Adam and Eve were the first ones to experience that). Regaining health is a matter of an individual’s own personal will, his capacity and his living conditions as he - and only he - sees them [7]. If, on the other hand, he has got a disease, if his body is out of order, it may often be cured through the intervention of someone with adequate medical knowledge. When it comes to health promotion, doctors can carefully facilitate the individual’s own effort to re-establish a new balance between himself and his experienced world. Health education is not without controversy. Can or should one teach anyone a healthier way of living if he or she has not asked for health information? Let us imagine a person suffering from a disease that compromises his daily life, e.g. diabetes. According to Toombs [lo] the patient tends to gradually adapt to his new situation through not recognizing his dysfunctioning body. If he does, he is at the same time threatened by a picture that tells him about the bodily and other consequences of the disease. To live in an undisrupted relationship to the world is to be unaware of one’s body. When the body works as expected, you never think of it as something apart from yourself. That is at the core of the concept of undisruptedness. The person who is constantly reminded of his disease by ambitious health workers may thus risk feeling worse than the person who is left alone with his disease-conditioned adaptedness. Toombs [lo] touches on this issue indirectly in her book. There is a conflict involved in being educated within a scientific discipline and then using the acquired knowledge in relation to human beings. But the conflict is resolvable. Doctors can reconsider and change their basic instrumental attitude to patients. If not, how could they expect the
0.W. Hellstriim /Patient Educ. Cows. 25 (1995) 247-256
patient to be able to change his own subjective picture of himself and of the world? To put it very simply indeed, the doctor can on the one hand choose to regard the patient as an object upon which to exercise his knowledge, seeing the patient’s body as exposed to external forces some of which tend to give rise to bodily injury, or the doctor can on the other hand choose to regard the patient as a subject, as a person with the ability to see the world in a personally unique, subjective way. In the former case, it is the doctor’s role to identify the forces to which the patient is exposed, to diagnose their effects on the individual level and then to do what he can to mitigate these effects, whilst in the latter case the doctor chooses to encounter the patient in clinical dialogue, striving to adopt such a stance as will make it possible for the patient to rediscover himself without the aid of his individually devised disease-language. In most encounters the doctor should be prepared to adopt (and have the requisite knowledge for adopting) both these attitudes. But when is it appropriate to lay the emphasis on one or the other of the 2 attitudes? And when is it appropriate to channel resources into clinical health promotion in the form of disease prevention, health education or patient education? 3. Two radically different kinds of health problems
Consider the 2 disease conditions MS and FS. Although the aetiology of MS is quite unclear, there is a global agreement among practitioners and researchers that the observable MS symptoms are connected with the sclerotic plaques in the central nervous system. FS is gaining in popularity and is now one of the most common diagnoses in the case of first visits to rheumatological clinics [11,12]. The main symptoms of FS are persistent generalized muscular pain, fatigue, sleep disturbances, and pain and tenderness on palpation at specific tender point sites [131. Commonly used diagnostic criteria stem from 1990 [14]. The cause or causes of the main characteristics of FS are by no means unambiguously identified [15]. In his study Gee1 [16] concludes: ‘The evidence for involvement of muscle pathophysi-
249
ology as a primary mechanism mediating the onset of symptoms is not compelling.’ In a 2-part review article (containing 195 references) Boissevain and McCain [l&16] find very few convincing results that make FS a well-defined disease entity. FS would maybe gain from being subjected to radically new efforts at explanation. Do patients, for instance, unwittingly use FS to reduce their gnawing feeling of not being what they wish to be? Do doctors likewise reduce their frustrating experience of not being as able as they would like themselves to be through leaning on self-deceptive ‘scientific’ inventions? Would it be possible to differentiate between patients who really are afflicted with disease and patients who, for intrapersonal or existential reasons, need their experiences of illness? If so, could phenomenologially oriented clinical dialogues with FS patients help doctors to understand both them and other patients as well as themselves and their own tendency to identify disease entities [19] rather than actively getting close to the suffering person? These more or less rhetorical questions give rise to a hypothesis: Inquiring into the issue of FS and the way FS patients actually are met can help doctors to improve their understanding of communication and to become skilled dialogue partners, no matter what reason the patient has for coming. MS is assumed to be by nature a ‘biological’ deviation, while FS is proposed to be the result of the doctors’ attempts to reply to certain patients’ need to escape their subjective picture of themselves and their relation to the world. When, according to Toombs [lo], a patient realizes the early effects of an organic disorder, he unconsciously reorganizes his self-body relationship. The failing body is not any longer an- obvious part of himself. He does not willingly see that the failing body is his body. When it comes to FS patients they rather seem to cling to and gladly present their feeling that their bodies are completely dysfunctioning. They usually do not give the impression that they are trying to give up their body. 3.1. Multiple sclerosis and clinical dialogue Toombs [lo] - who herself suffers from MS - identifies 4 phases of development of the per-
250
0. W. Hellstrkn /Patient Educ. Cows. 25 (1995) 247-256
sonal experience of her bodily disorder: pre-reflective sensory experience, suffered illness, disease and disease state. This she believes to be an adaptive process that makes her life as an MS patient easier. She neutralises or encapsulates that which no longer functions as it used to. Thus, she is able to live her life relatively unaffected by her non-functioning body - at least psychologically. (When sound and healthy she e.g. used to talk about ‘her’ legs; now she finds herself referring to them as ‘these’ legs). The overall aim of Toombs’s book is to clarify the theoretical basis of the fundamentally different views of disease that the doctor and patient have when it comes to seeing the disease that is the subject of their dialogue. The attempts at dialogue often lead to misunderstanding. The patient has his genuinely unique life-history and his personal history of illness. Toombs shows how the patient gradually creates new meaning in order to be able to tolerate the body which functions worse and worse. The doctor is socialised into a professional community in which the understanding of diseases is developed in an intersubjective medico-social culture. It is the shared tacit context of used concepts that gives doctors their meaning as health workers. Thus, to say the right word is to recall a nourishing world of meaning and coherence [20]. In order to keep being confirmed as part of a meaningful world the doctor uses his concepts in a congruent, consistent, coherent, self-evident way. In this conceptual context, there is no room for private interpretations of the patient’s messages, nor for his lay language. Is it possible to bring these 2 pictures of disease into line with each other in such a way as to enable the doctor and patient to engage in genuine dialogue? Toombs’s analysis of her own process of adapting to her dysfunctioning body may help us to see clearly the doctor’s relationship to his patient. 3.2. Fibromyalgia syndrome and clinical dialogue
Human the doctor something tened to.
dialogue takes at least 2 persons, and his patient. They both want to and are hoping to be heard and There certainly are persons who
e.g. say lislive
with relatively high self-demands. When unsuccessful in reaching their goals, they tend rather to accuse themselves than to blame others. Maybe the FS patient belongs to this group [2]. He experiences himself as afflicted with a disease, involving e.g. fatigue, pain and bodily dysfunctions - this unwittingly in order to, hypothetically, dismiss a still worse self-image on the intrapersonal level. Theoretically, human beings exist on 3 different levels. On the ‘biological’ or extrapersonal level the human being is an organism existing in relation to a material reality and thus exposed to mechanical disturbances of equilibrium. On the psychological or interpersonal level the human being acts as a reflecting, symbol-nourished being. On the spiritual, existential or intrapersonal level the human being exists in relation to himself [21]. At his disposal are his thoughts, his language and his capacity to look at himself. His relation and attitude to himself are also exposed to disturbances. A person who e.g. does not examine the motives, intentions and purposes underlying his own actions will neither be able to develop his own experiential capacity nor his rational, purposeful pattern of action. On the other hand, the person who is too self-critical will suffer a paralysis, be unable to act. What, then, does a person do who is overly critical of himself and of his capacity and who at the same time feels a responsibility for fulfilling his undertakings? Perhaps he tries to escape his personal responsibility for not being as able as he would like to be. Probably a very common way of trying to solve such a dilemma is to imagine oneself afflicted with illness. If this assumption is correct, doctors risk encountering patients who impel themselves to be physically ill so as not to founder as persons. Such a patient forces himself to feel that he does not function as a body in order not to have to feel incapacitated in the face of his own - often unrealistic - expectations [2]. ‘If I hadn’t been ill, of course I’d’ve been able to reach my goal.’ What stance, then, does the doctor himself with his own sometimes high demands upon himself with regard to helping sick people - adopt when he encounters patients whose goal is to
0.W
Hellstrlim
/Patient
Educ.
have it confirmed that they are ill at the same time as they give the impression of wanting to be freed from their sufferings? Misunderstanding is ready and waiting. Does the doctor act in essentially the same way as the patient? The doctor maybe escapes his feeling of inadequacy by choosing to affix one or other name to the patient’s condition. This name - a diagnosis - gives the doctor access to a programme of action, thereby reducing his confusion. 4. The diagnosis saves patient and doctor from self-criticism Whitbeck [22] writes that the common definition of diagnosis as the determination of the nature of a disease is misleading. She continues: ‘... diagnosis is properly understood as integrally related to the rest of clinical reasoning rather than as a task that is the central one in clinical reasoning and to which all other problem solving is subsidiary.’ The doctor’s act of naming what he perceives, is to some extent a response to an unacknowledged need of escaping his unbearable self-criticism. To put a ‘scientific’ name on what confuses him as a trained professional helps him to reduce his bewilderment. Concomitantly he, too, relieves his patient from the threatening meaninglessness: to get a name on some significant part of one’s life situation is to be confirmed as someone who really belongs to a human world of meaning. This proposed adaptive strategy to resolve a threatening chaotic life situation is applicable both to doctors and to their patients as well as to infants and growing children [23]. The assertions concerning the connections between the signs the doctor sees as illness and a corresponding organic basis rest upon a view of man and a view of illness and medical knowledge - both views should be made accessible to criticism. To doctors, the patient can be seen as a person whose chief goal is to make himself understood. This is his main reason for expressing himself. He is obliged to make use of his body in order to communicate with the world around him [23]. As a biological-technical system the human body is at the same time exposed to injury. What
Couns.
25 (1995)
247-2.56
251
in the first place makes the encounter between doctor and patient ambiguous is that the signs of disease in the individual are often difficult to distinguish from what are simply experienced and expressed symptoms, i.e. the illness aspect [1,2]. Why do healthy persons use symptoms of illness in order to put their existence into some sort of shape? In order to answer we had better investigate what happens during the very first part of a person’s life. When the human infant develops from being an organic part of his mother into becoming a member of a world of meaning from a materialistic dependency into a symbolic or communicative one - he incessantly needs to be confirmed by others [23]. If not, he will vanish or dissolve as a specific human being. His very being human rests on his ability to utilize and interpret the meaning of verbally or otherwise conveyed human messages. Hoping to be understood, he keeps expressing himself. The confirmed ability to convey meaning-evoking messages to others is that which above all nourishes him as a dweller in a world of meaning. If on the other hand the person mistrusts his personal capacity to make himself understood, he needs first of all to escape the feeling that he himself is responsible. There comes the illness into the picture, the subjective aspect of having (being afflicted with) a disease. The illness fulfills a multifold purpose - firstly it allows the patient to regard himself as someone who is not responsible for his incapacity, in as much as he is afflicted with disease. Secondly, the illness diverts his thoughts from things that could remind him of his otherwise experienced incapacity, and thirdly, it helps him to keep in touch with meaning [20] in as much as both doctor and relatives understand the illness in an expected way [lo]. 5. Patient education and health education The key question in any clinical encounter that aims at health promotion is whether doctors really are able to influence their patients to change health behaviour. The Norwegian sociologist Thomas Mathiesen [24] has studied the generally well-known experience that persons and institutions only unwillingly change their once adopted
252
0. W. Helktiim
/Patient Educ. Coum. 25 (1995) 247-256
opinions and action programmes. They would rather defend the status quo. In short, Mathiesen says that if one manages to present an alternative message in an openly proposed, ‘suggested’ and ‘foreign’ way, it cannot be either overlooked as of no importance or disregarded as being irrelevant
WI. If a patient is to be induced to change attitudes, it is important that the doctor has a command of the art of medical dialogue. If the 2 of them do not speak the same language, the encounter cannot become the basis of any change at all. One important quality in this respect is the process of understanding. To the philosopher Hans-Georg Gadamer [25], the essence of understanding is a constant revision of prejudices. A doctor who sees the significance of genuine dialogue puts his general theory about ill patients within brackets and lets his dialogue partner’s words and other types of message refer to the personal life context of his patient and not to a general theory. The patient then feels confidence in his doctor and tells him about such personal issues as he most probably would not have mentioned to a conventionally working doctor. The 2 rely on each other and a genuine dialogue is taking shape. Toombs [lo], Baron [19], and others stress the importance of the dialogue and the fact that the doctor should adjust to the patient’s view of illness, his subjective, experiential picture of what it is to be ill. Barnlund [26]: ‘It is tempting in the daily clash of words to forget that it is the perceived world - not the real world - that we talk about, argue about, cry about’. In order to accept a modification of his everyday living habits, the patient first of all must accept that he has got some disorder that is threatening his future health. According to Mathiesen’s theory of action-research [24], the doctor should not disclose the full consequences of a certain health behaviour proposal when he addresses e.g. diabetics and deals with patient education that aims to stop smoking and thereby to reduce the risk of e.g. early blindness. Toombs’s phenomenological investigation of her own MS indicates that the chronically ill person often de-
velops a relationship to his disease which is aimed at making himself unaware of the dysfunctioning parts of his body. Why should he bother about listening to those who fuss about risks that he does not run? Again this problem of patient education may be solved through developing relationships to patients that are based on genuine clinical dialogue. Once the doctor has acquired skill in encountering his patient as a dialogue partner whose genuine illness experience he actually cannot do without, the chances of being able to establish a health-liberating atmosphere increase accordingly. The patient cannot easily free himself from ideas that are elaborated in a dialogue characterised by the attempt to achieve mutual understanding. Let us now return to MS and FS and see how patient education and health education apply to both diseases. We recall that MS is assumed to be due to a technical disturbance on the biological level, whereas FS is hypothesized to be the result of years of misunderstanding, where long-lasting static muscular tension gives rise to pathologic pain perception, i.e. a disturbance originally on the intrapersonal level of human life, in turn leading to bodily dysfunction. His self-demands force the patient to come to terms with his disapproval of himself. He cannot use ordinary words, because they threaten to tell him that he is as bad as he fears. The muscular tension of the early stage of FS may be understood as a primitive and ambivalent language designed to have the patient confirmed as someone who is ill (and thus ‘nonresponsible’ in respect of the experienced situation) in order not to come close to his subjectively perceived threatening guilt and self-condemnation. The situation being so perceived, the doctor can respond with a willingness to see presented symptoms as personal messages and not as signs of disease. Such a response may help the patient to leave his primitive, ambivalent, less discursive language, based on symptoms like muscular tension, tiredness and bowel dysfunction, and enter into a genuine human dialogue. The comparison between MS and FS lacks empirically based scientific proof. Nevertheless, it
0.W HelLFtriim /Patient Educ. Couns. 25 (1995) 247-256
may be useful as a point of departure when discussing health promotion and dialogue. Vast experience tells doctors that there are many patients who resist almost any health-promotive efforts as well as medical care and cure. Often strong unconscious motives and forces contribute to the patients’ ‘choice’ of the body-expressions. Then a simple (conscious) dialogue is not enough. It may even provoke and insult the patient. 6. Health promotion
and clinical dialogue
A woman patient was seen by her doctor for 10 years. Five years ago he lost contact with her. Now she has received the diagnosis FS - and so has her daughter. Is FS a hereditary disease? Is it transmitted in some hitherto unknown manner? Would preventive measures have helped the 2 women not to develop their syndromes? These questions are at the core of the issues of disease prevention and health promotion. Still they would hardly be relevant in connection with MS. Firstly MS is proposed to be representative for a group of diseases; the health-promotive efforts concerning this group require a quite specific dialogue skill, namely a professional ability to see the illness as the patient sees it [lo]. Other diseases in the group are diabetes, rheumatoid arthritis, stroke, cancer, etc. If the advice given serves too sharply to remind the sick of the severe complications which are associated with the illness, they have difficulty in maintaining a tacit and relatively well-functioning relation to their non-functioning bodies. They will not appreciate advice which disturbs their new balance. If on the other hand the doctor disregards the effects of the illness, he will probably not be giving the advice which the individual patient can (from the objective point of view) derive satisfaction from. The doctor has to find a balance between on the one hand his desire to understand the patient on the basis of the latter’s subjective picture of his illness, and on the other hand his (the doctor’s) desire to communicate his own subjective picture of the same illness. Both want to go on seeing reality in their habitual way. Since, thus, both
253
patient and doctor would like to cling to their respective subjective pictures of the same illness, the solution lies in finding a common picture. This is best achieved by means of clinical dialogue. Perhaps the mainly natural scientific education the doctor has received is a stumbling-block in this respect. Baron [19]: ‘We seem to have a great deal of difficulty taking seriously any human suffering that cannot be directly related to an anatomical or pathophysiologic derangement.’ Secondly it is proposed that FS be representative for patients whose diseases often may be avoidable. In this group there are the so-called psychosomatic afflictions, e.g. duodenal ulcer, migraine, chest pain, vertigo, tiredness. How then are diagnoses produced? Following Whitbeck [22], the production of a diagnosis concept does not stand in value-free isolation from the subjective mind of the doctors using it, from different more or less irrational considerations, and from prevailing action programmes or remedies at hand. Sometimes the very diagnosis is useful for the patient. Having been afflicted with something that is nameable may partly relieve the person from an unmentionable suffering. Furthermore, it may be of great use for the doctor who feels confused when he has no rational basis for doing what is expected of him as a professional. In the case of FS, both parties seem to gain from the very process of naming. The most important of my points is that FS runs the risk of being used too often in order to solve not necessarily the patient’s problem but the doctor’s If, thirdly, these presented views are plausible, how do doctors prevent FS when confronting a patient who in future runs the risk of being named a bearer of this disease? The question gives rise to a counter-point. How could one systematically prevent something the very existence of which is doubtful? Croft et al. [24] conclude that fibromyalgia ‘does not seem to be a distinct disease entity’. Maybe one should realise that there are diseases of different orders. Some of them can be prevented by means of systematic information (e.g. chronic obstructive lung disease as the effect of smoking). Others can be encountered in close
254
0. K HellstrGm /Patient Educ. Couns. 25 (1995) 247-256
dialogue, in which both partners try to understand the bodily symptom presentation and what it stands for on a beyond-body level. That which is not yet formed is prevented, although neither the patient nor the doctor knows what they have eliminated. What is done in this type of encounter is proposed to be given the name of genuine health promotion. It is grounded on the belief, the practical experience and in fact the scarcely surprising finding, that the life of human beings may be troublesome on the specifically human level just as well as on the levels that we have in common with our fellow mammals. 7. Practice implications Health promotion ought to be illness-orientated, i.e. focused on the experiences of the persons who themselves live with their dysfunctioning bodies. To be successful in health promotion we need general knowledge about that which makes the patient-person ill, not only about the diseases he has. The essay is meant to inspire practitioners to integrate cure and care, to both hear what is said and dare listen to what is not said, i.e. implied through saying something less delicate or perilous. Secondly, it implies the value of integrating disease-oriented efforts and health promotion through practising clinical dialogue. Thirdly, it can inspire general practitioners to integrate illness-orientated research, health care, and health promotion. This increases their abilty to convey to colleagues that which is revealed in the dialogue, when the illness aspect of the patient’s complaint is in focus. How do we early in his FS career assist our patient to abandon his experience of being afflicted with a disease and inspire him to express himself by means of a more constructive language? 8. Conclusion Why don’t the patients do as we tell them? Maybe we do not quite know what we are talking about when we encounter them. The patient tries to convey his subjective experience of being ill,
whereas the doctor hears him talking about his failing body. Compare on the one hand the MS patient who for existential reasons keeps himself unaware of his failing body, and on the other hand the FS patient who for existential reasons maybe ‘clings to his body’ and nourishes a feeling that it is out of order. How do we meet them? The aim of this paper is to raise some basic issues of importance for health education, patient education, health promotion and clinical dialogue through discussing useful literature and how to apply it in practice. The paper is meant to contribute to the development of doctors’ ability to recognize situations in which persons’ presented experiences of illness are, on the one hand, due to the efforts to come to terms with their disrupted self, or, on the other hand, due to their being afflicted with a disease - or both. This competence first of all presupposes a good knowledge of the concepts of health, illness and disease. Whereas the disease state [lo] may best be viewed as a dysfunction on the techno-biological level, the concept of illness and health catches the lived wholeness of the integrated individual self, the intra-personal level. This distinction helps us to see the importance of reconsidering the not infrequent practice of health promotion without regard to whether it addresses illnesses or diseases. If a person keeps his disrupted self masked by means of an experienced illness and the doctor is not competent to see the significance of it, seen as a message, he maybe tries to teach the patient how to come to terms with his symptoms of illness, perceived by the doctor as signs of disease. This doctor mistakes the patient’s expressions for what he expresses, he mistakes the symptoms for the signs. Diagnoses are not value-free. His own desire to be professionally successful may deceive the doctor when perceiving the patient’s symptom presentation. Then the chosen diagnosis does not identity an objective and preexisting reality. The diagnosis is rather an invention that makes useful the means of cure at hand. In medical practice there are situations in which health promotion is a successful and rational enterprise. However, we should be aware of the tendency of doctors, health
0. W Hellstrkn /Patient Educ. Couns. 25 (lW5) 247-256
policy-makers and people in general to prefer the use of the word ‘health instead of ‘absence of disease’ just because of the stronger positive connotation of the former [3]. Maybe the connotation of the word health seduces doctors to overestimate the value of health promotion as compared to illness-orientated practices. A comparison between MS and FS, understood as paradigm cases, is intended to shed light on the idea that there are diagnoses of distinctly different kinds. Some of them, e.g. pernicious anaemia and diabetes have a history very similar to the discovery of new biological species. People suffering from corresponding dysfunction may very well gain from secondary disease prevention as well as health promotion in the form of health education and patient education - if it is performed with sensitivity. The evolution of the other extreme kind of diagnosis, represented by FS, is more similar to the production of e.g. criminal laws. Society forces rules on those individuals whose behaviour is extraordinary. The tacit reason for naming a patient’s presented symptoms FS may be the doctor’s experience that both of them simply gain from it, although they really do not know why. The doctor, too, is relieved through his escaping confusion. Patients belonging to the FS group are not as helped by means of the same kind of health promotion as are the ones of the MS group. Phenomenologically based theories can best help us to understand these patients’ illness experiences. Further reflections on the significance and import of diagnoses of FS type may help doctors to elaborate health-promotive enterprises that are successfully applicable to those patients who need their illnesses in order not to disintegrate as persons. Phenomenological method is promising and can improve further research aiming to understand FS patients and others with illness-orientated self-adaptive modes of being.
255
Society, Linkiiping University, for comments on an earlier version and to The Dalarna Research Institute that partly supported the study. References [l] [2] [3]
[4] [5] [6] [7] [S] [9]
[lo]
[ll] [12] [13] [14]
Acknowledgements
[15]
I am grateful to Jennifer Bullington and Lennart Nordenfelt, Department of Health and
[16]
Hellstrom 0. The importance of a holistic concept of health for health care. Examples from the clinic. Theor Med 1993; 14(4): 325-342. Hellstrom 0. Health promotion in general practice. On meanings and aims in interaction. Em J Public Health 1994; 4: 119-124. Whitbeck C. A Theory of Health. In: Caplan AL, Englehardt HT Jr, McCartney JJ, eds. Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, MA: Addison-Wesley, 1981; 611-626. Nordenfelt L. On the Nature of Health: An action-theoretic approach. Dordrecht, The Netherlands: D Reidel, 1987; 35-104. Nordenfelt L. Concepts of health and their consequences for health care. Theor Med 1993; 14(4): 277-285. Nordenfelt L. On the nature and ethics of health promotion. An attempt at a systematic analysis. Health Care Analysis 1993; l(2): 121-130. Porn I. Health and adaptedness. Theor Med 1993; 14(4): 295-304. Seedhouse D. Health. The Foundations for Achievement. New York Wiley, 1989. Boorse C. On the distinction between disease and illness. In: Caplan AL, Englehardt HT Jr, McCartney JJ eds. Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, MA: Addison-Wesley, 1981; 545-560. Toombs SK. The Meaning of Illness. A Phenomenological Account of the Different Perspectives of Physician and Patient. Dordrecht/Boston/London: Kluwer Academic Publishers, 1992. Croft P, Schollum J, Silman A. Population study of tender point counts and pain as evidence of fibromyalgia. Br Med J 1994; 309: 696-699. Wolfe F. Fibromyalgia. Rheum Dis Clin North Am 1990; 16: 681-698. Henriksson CH. Longterm effects of fibromyalgia on everyday life. Stand J Rheumatol 1994; 23: 36-41. Wolfe F et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia, report from a multicenter committee. Arthritis Rheum 1990; 33: 160-172. Wall PD. The mechanisms of fibromyalgia: a critical essay. In: Vaeroy H, Mersky H eds. Pain Research and Clinical Management, Vol. 6: Progress in Fibromyalgia and Myofascial Pain. Amsterdam: Elsevier, 1993; 53-59. Gee1 SE. The fibromyalgia syndrome: musculoskeltal
0. W Helktim
256
pathophysiology.
Semin Arthritis
/Patient
Educ.
Rheum 1994; 23(5):
347-353.
[17] Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome. I. Medical and pathophysiological aspects. Pain 1991; 45(3): 227-238. [18] Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome. II. Psychological and phenomenological aspects. Pain 1991; 45(3): 239-248.
[19] Baron RI. An introduction to medical phenomenology: I can’t hear you while Pm listening. Ann Intern Med 1985; 103: 606-611. [20] Antonovsky A. Unraveling the Mystery of Health. Jossey-Bass Inc., Publishers, 1987.
Coum
25 (1995)
247-256
[21] Frankl VE. The Doctor and the Soul. New York: Alfred A. Knopf, 1965. [22] Whitbeck C. What is diagnosis? Some critical reflections. Metamedicine 1981; 2: 319-329. [23] Winnicott DW. The Maturational Process and the Facilitating Environment. New York: International Universities Press, Inc., 1984. 1241 Mathiesen T. The politics of abolition. In: Mathiesen T. editor. Scandinavian studies in criminology, Vol. 4. Oslo: Universitetsforlaget/Martin Richardson, 1974: 13-36. [25] Gadamer H-G. Truth and Method. London: Sheed and Ward, 1979. [26] Barnlund DC. The Mystification of Meaning: Doctorpatient encounters. J Med Educ 1976; 51: 716-725.