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Linus Geisler: Doctor and patient - a partnership through dialogue   © Pharma Verlag Frankfurt
Discussion with the chronically sick
Acute and chronic illness
From the viewpoint of the patient
Learning to cope with chronic illness
The doctor and the chronic patient
Medical ethics, more than ever before, need
to proclaim that health is not the absence of 
impediments, but rather the power to live
with them.
Dieter Rössler, physician and theologian
Discussion with the chronically sick
Over many thousands of years, doctors have mainly been concerned with treating acute disease. Changes in the structure of the population, with increasing life-expectancy and the availability of many medical procedures to save and prolong life have led to a overwhelming change in medical practice and horizons. Even in 1901, 41% of the population died of acute disease, changing by 1955 to only 9.8%. Chronic disease was the cause death in 46% in 1901, but this rose to 81.4% in 1955. A study of general practice in northern Germany has shown that 68% of the patients have chronic illness. The census of 1982 showed that out of 9.6 million patients in West Germany, 66% had chronic illness.

Raspe defined chronic illness as follows: "We refer to illness as chronic, if it creates hardship for the body or mind of the patient (and usually for others) for the rest of his life." These impediments can be specific to the illness, such as chronic shortness of breath in asthmatics, difficulties in getting about in rheumatoid arthritis, but can also be common to all chronic illnesses: the need for continuous therapy and follow-up, social isolation, uncertainly about the future, unemployment or lost career opportunities, difficulties with those around them, as well as stress caused by lack of explanation.
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Acute and chronic illness
Acute and chronic illnesses are completely different forms of being ill. Recognition of this difference is a prerequisite for an appropriate medical approach and behaviour. It also involves the doctor accepting that he is involved in the care of the chronic sick. Hartmann puts it succinctly: "For the patient who is chronically sick, his doctor is 'chronically Doctor'". He goes on: "What this implies is experienced by every doctor who has cared for a chronically sick patient over 10 or 15 years. When this patient dies, the doctor notices it and is aware of how this patient had become part of his own identity. He grieves for him, and this grieving is, as with close relatives, a restoration of his lost identity."
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From the viewpoint of the patient
Chronic illness is characterized by the following (Schmidt, Hartmann):
1. Prolonged illness of unforeseeable duration. It is important to recognize that a large proportion of "highly informed chronically ill patients" cherish concrete hopes for an end to their illness. Hartmann estimates this to be 50% of all those with chronic rheumatoid disease.
2. Long-term concerns and stress, often associated with a latent dread of death.
3. Knowledge of the incurability, with at most a chance of being able to manage in spite of irreparable impediments.
4. Long-term damage, left in the wake of the disease, which prevents success in certain careers or limits personal development.
5. Continual need for check-ups, observation, treatment and/or nursing care i.e. the continual dependence on others or on apparatus and machines (dialysis patients).
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Learning to cope with chronic illness
It is almost impossible to be ill for a prolonged period without going through a process of coming to terms with it. Although the individual repertoire of coping strategies show a great variability, there are a series of basic mechanisms of a general sort, which can be grouped together under the heading effacing up to it. Knowing about them is of great importance in the care of the chronically sick. There are two important reaction patterns:
Defense mechanisms
Coping behaviour

Defense mechanisms are processes of working through the situation, which usually are unconscious, caricature reality and have the objective of temporarily dealing with threats and anxiety. Direct evidence of them disappears if this mechanism succeeds and only indirect effects hint that defense mechanisms have been effective. An example is seen in a patient who exhibits marked discrepancy between his balanced or even euphoric mood and the severity or hopelessness of the illness.

One of the most important defense mechanisms is that of suppression. In this way, "motives, moods and ideas that the ego can not manage are not taken into consciousness or are split off, mostly in an unconscious process" (Schmidt). The patient no longer needs to try to cope with reality, and moves around in a more healthy world that he has constructed for himself. The most extreme form of suppression is denial which can be seen often in cancer patients. However this process of denial cannot be maintained continually and completely, so that the observer may see confusing swings between "knowing and not knowing".

A second important defense mechanism is regression. This is understood to be "the replacement of complex forms of satisfaction by one or several, perhaps even all, motives in the person by more primitive forms of satisfaction. Put in another way, regression is the recourse to primitive (earlier) levels of motivational development" (Toman, 1978). These can be seen particularly clearly in some patients during prolonged periods in hospital. These patients act childishly, becoming dependent and limited. Eating, drinking and bowel action become dominant in their lives. The "career patient" can be understood as an extreme example of regression. The patient plays out a certain unwritten script (depending on the sort of illness, its course and stage) which determines the possibilities for treatment.

Coping is a different process of overcoming the chronic illness. This implies behaviour polarized between avoidance on one hand and vigilance on the other. Avoidance is shown by the patient who no longer attempts to face up to the stressful aspects of his illness, which are (apparently) not believed, or the threat not recognized. Vigilance however is characterized by taking threatening aspects of the illness extremely seriously and being concerned with these to an excessive degree. It is unclear which of these two strategies (vigilance or avoidance) is "more effective".

The many stages of facing-up and adaptation in the seriously ill can be clearly seen for example in dialysis patients. Baldamus (1986) listed factors which can assist adaptation in chronic dialysis patients:
Recognition of the disease
Desire to continue living
Discipline (diet, fluid intake, medication, dialysis regime)
Rehabilitation in a career
Social activities
Family relationships
Psychological acceptance

It should not be forgotten when caring for the chronically sick, that secondary unconscious processes can run parallel to the disease, and serve to maintain the disease. These tendencies are encouraged by those social structures which maintain a high degree of social security.

The differences between acute and chronic sickness (F. Hartmann, 1986)
The differences between acute and chronic sickness (F. Hartmann, 1986)
In principle, it must be presumed that all chronic illnesses are accompanied by secondary gain. This increases with increasing conveniences (freedom from unpleasant work, special holidays, different status) that are conceded in connection with the illness.
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The doctor and the chronic patient
There are very basic differences between acute and chronic illness. They therefore need to be approached by different methods of leading discussions and strategies of treatment. Hartmann differentiated between acute illness and chronic being-ill, as shown in the Figure.
The differing division of trust and responsibility ...
The differing division of trust and responsibility between the doctor and the acutely or chronically patient (F. Hartmann, 1986)
In view of the varying natures of acute illness and chronic illness, the sharing of trust and responsibility is completely different. While acute illness is characterized by conferring responsibility and trust to others, in chronic illness, self-responsibility and trust in one's own capabilities are needed (see Figure).

Further points of view have to be taken into account in the care of the chronically sick:
The chronically ill patient often shows a particularly intense need for information. This can mean that he becomes an "expert" over the course of his illness. This expertise must be accepted as part of the adaptation process, and it can be a positive element in patient care.
The chronically sick patient becomes extremely sensitive to claptrap, half-truths and deceptive hopes. These are often the real cause of wandering from one doctor to another. Werner Zenker, who has chronic asthma, writes about learning to live with asthma as follows: "Can you protect yourself from bad experiences with doctors? A prerequisite is not to have excessive expectations! Only when you are convinced that your doctor is not pretending to be a miracle worker, but rather your partner in the disease process, and only after many concrete observations, can you decide if you have made a good choice".
Chronic illness can become a tool which can be used consciously or unconsciously to suit one's own purposes: to control the spouse, the doctor, the Health Service, or what goes on around one.

Almost every chronic patient leaves traditional medicine and uses other methods. The doctor should not be personally upset about this, but accept it as a learning process which is necessary for his patient, nevertheless taking care to factually inform him of the dangers of any particular method of treatment. Hartmann summarized the responsibilities and the role of the doctor in the care of chronically sick patients as follows:
1. Prevention and overcoming of crises
2. Control of the symptoms of disease
3. Working out of ways of behaviour and treatment plans
4. Organizing protection from social isolation
5. Preparations for changes or relapse of the disease
6. Encouragement and help to behave and cope like a conditionally healthy person
7. Finding out about help to which he is entitled: social assistance, money, work, rehabilitation
8. Creation of a working doctor-patient relationship

In the ideal case, the doctor will be able to "assist a patient to move from the status of chronic illness (even temporarily) into that of qualified healthiness" (Hartmann).

Guide-lines for the care of chronically ill patients
1. Being-ill chronically is not at all the same as acute illness.
2. More emphasis has to be placed on care than on treatment.
3. Processes for coping (defense mechanisms, overcoming strategies) must be taken into account. It is most important to strengthen the patients' self-responsibility and self-reliance.
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Linus Geisler: Doctor and patient - a partnership through dialogue
© Pharma Verlag Frankfurt/Germany, 1991
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