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Linus Geisler: Doctor and patient - a partnership through dialogue   © Pharma Verlag Frankfurt
Conversations in intensive medicine
Present position
The 4 realities
The patient's reality
My heart stopped
Doctor and staff (the treatment team)
...    >
 
So the patient dies, in the typical style of our times, in the midst of the hectic activity of a 
supertechnicalized and overmedicationalized medicine, in sterile rooms protected from the dirty
world outside, after many days of doctors battling to prevent his death. Cut off from all
communication with his relatives, friends, colleagues and spiritual support, death now becomes
agony for the soul. Here intensive medicine is the hell of loneliness, with the soul poised on the
edge of oblivion, in the scientific research center within which the patient is totally lost when he
grapples to come to terms with the reason for his death, and the completion or closing of his life.
Heiner Geissler
Former Minister of Health, W. Germany
 
Doctors should not force people to die more than once.
Prof. Burnet, Nobel prize-winner, Medicine
 
The impartial observer will quickly become aware that all of the difficulties of medicine culminate in
the intensive ward.
R. Flöhl, Journalist
Conversations in intensive medicine
Present position
The intensive ward is the area of medicine with the greatest need for communication, but at the same time the place in which all sorts of communication experiences the greatest difficulties. The psychological stresses arising within intensive medicine can be divided into three groups:
1. Problems with communication
2. Exhaustion, disorientation and false perceptions
3. Anxiety, panic and worries.

Loss of communication and lack of information create the heaviest burden for the patient on the intensive ward. This has been shown in particular detail in the "Vienna Model" (H. Thoma et al.). The quality of intensive medicine depends to a great extent on the quality of communication between those affected and those involved: the patients, doctors, nursing staff and relatives. Each of these groups experience and judge intensive medicine from completely different perspectives, or more accurately, from various realities. There is no other branch of medicine in which the phenomenon of differing realities has such an enormous importance as that within intensive medicine, and nowhere else are the results of not taking this phenomenon into account or ignoring it so grave. Only unbiased, open communication, which acknowledges the perspective of the other, offers the possibility of correcting or changing the public perception of the intensive medicine over the long-term. The media still predominantly propagate the impression of the intensive ward using terms such as "Death station", "Torture chamber", "gloomy imprisonment", "inhumane medicine" or "sacrificial death" (see also Heiner Geissler link).

Intrinsically, intensive medicine is neither humane or inhumane, in the same way that electricity can be used for heating a house as well as for the electric chair. What is decisive is that "intensive" medicine does not lose its own expectations and objectives, which are those of making humanity more apparent in times of extreme life-threatening conditions by offering appropriate medical, nursing, technical, pharmaceutical and other resources for those whose lives are in great danger (B.F. Klapp).

Communication is the decisive factor which guarantees truly "humane" medicine (which is centered around the patient), rather than the extensive use of all medical and technical possibilities. Klapp puts this objective into a nutshell: "It is only the relationship between people involved in events on the intensive ward which will ensure that technology does not take on a life of its own, leading both patients and staff to dread the impact that could be made by the machines. Communication alone can prevent intensive medicine becoming apparatus medicine." He looks at the present position of intensive medicine where he recognizes "only a particular expression of our social relationships and their dynamics". He projects this into the future, drawing the shocking picture of a society, whose overriding motto is: "Try to do as much as possible for everybody", in which intensive medicine could take on the ghastly role of the "final obligation of the person to consume all that he can when terminally and seriously ill".

Successful communication in the widest meaning of the word can only be achieved in the area of intensive medicine, where staff regard their work realistically and ultimately based on a positive situation. It is stressful, often depressing and occasionally exhausting to the staff that 20-30% of patients taken onto the intensive ward will die there. However when these figures are seen in another light, they become acceptable as well as encouraging and motivating: 70-80% of desperately ill patients can survive or be saved by the maximal involvement of human and technical resources.

An old proverb from China can be used to guide the involvement of the doctors (which in the widest meaning means not to act, but also to leave alone): "Treatment should not be worse than the disease."
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The 4 realities
A patient who was treated for some time in an intensive ward in Muenster after a serious operation, wrote in her report of the experience: "I felt very safe and supported, knowing that everything possible from a human point of view was being done for my sake." She also wrote about the nightmares: "I dreamt, for example, that I was in a laboratory, in which animal experiments were being carried out. The infusion stands took on the appearance of gorillas, and X-ray machines became dinosaurs."

A nurse who had been working on the same intensive ward for 3 years reported: "I have certainly learnt how to help the seriously ill patient with modern methods. Nevertheless my feelings of helplessness and impotency are still there. These come up especially when children die after a serious head injury, or when we cannot save patients even after long periods of care and extensive treatment. ... I used to be woken by nightmares."

Twenty six out of 29 relatives of patients who were asked for their first impressions of the intensive ward in a study of the Aachen Technical University, chose terms such as "horrifying, terrible, ghastly."

A doctor who had been on a burns unit for a long period demonstrated to me with great precision which sorts of German cars were particularly likely to be involved in accidents leading to severe burns. When I asked if his job was depressing due to the particularly unfavourable prognosis of extensive burns, he denied it and said in fact they could produce very interesting pathophysiological pictures.

These four descriptions from patients, staff, relatives and doctors show how very differently reality can be experienced in an intensive ward. The success of every communication in the area of intensive medicine stands or falls on recognition of this fact. If it is missing, even words can be deadly. Müller, Thywissen and Behrendt (quoted in Hannich et al.) describe what was said to the relatives of a 27-year old motor cyclist with severe brain trauma just before his operation. The family were sent home by the surgeon with the words: "Don't hold out too much hope, go home and sleep it off; we must all die sooner or later."
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The patient's reality
Systematic studies of what the patients experience, feel, expect and suffer have been initiated in the last few years, and have shown more clearly which questions and anxieties concern them. These studies have revealed that the patients themselves do not always experience the intensive ward as an apocalyptic torture chamber.

Most studies from the various areas of intensive medicine have shown that the majority of the patients have a positive attitude to the time that they are treated intensively. This is emphasized by Lawin: "Intensive treatment is judged much more positively by patients than those who are not involved." The University of Muenster (anesthetics and operative intensive medicine) found that 96.4% of patients treated long-term thought that their treatment on the intensive ward had been positive.

An example of how differently patients and staff judged treatment on the intensive ward is shown in a study from Unger and Bertel. 63 patients under 75 years old who were treated on an intensive ward for acute myocardial infarction were asked about their experience by means of a questionnaire. Staff were asked at the same time how they would estimate the care from the patient's viewpoint. Whilst the patients experienced admission onto the intensive ward, the initial therapeutic procedures and the observation of machines as reassuring rather than producing anxiety, the staff considered that this would be stressful. However what the patients found negative and particularly difficult to bear, namely the inability to determine the actual extent of their danger, did not appear to the staff to be a problem of particular importance.

A group of Austrian anesthetists and intensive care doctors developed the "Vienna model" for the psychological care of seriously ill patients (G. Pauser). They randomly asked 50 patients on discharge from three intensive wards to sort 52 statements into four categories, in order to determine which factors result in the most stress for the patient in the intensive ward. The conclusion was that the most stressful items could all be included under the headings lack of information and lack of communication. These were as follows:
"That I don't know how long I must stay in hospital."
"That I only received superficial information about my state of health and my illness."
"That I had such little and such short contact with the doctors."
"That nobody told me what the doctors had decided to do with me next."

The most important conclusions of these results is that they not only find the lack of information and communication as highly stressful factors, but at the same time show how simple steps could lower this stress.

Reports of the experience of doctors who themselves were patients on intensive wards are illuminating in two senses, as they are rooted in "two realities" (one of patient, and one of doctor), and also because the descriptive problems of lay people are not present. A professor of internal medicine who spent many days on the intensive ward of a surgical clinic, wrote in his "Experiences as a patient on an intensive ward": "I found it wonderful that the experienced team, assisted by the watchful machines, would do everything to help me overcome my serious illness and the subsequent operation. I noticed that pain and restlessness were always alleviated, in as far as this was possible without danger. Even now, I still feel deeply indebted to the staff and doctors on the intensive ward." Here again the dominant feelings are those of security and of thankfulness. The report is however critical of typical stressful factors: "... the excessively loud noise on the intensive ward created by speaking too loudly, doors slamming, the clatter of wooden heels, the excessive use of glaring lights, the unalleviated monotony, the grid on the ceiling which becomes a fixation point for anyone lying on their back, the feeling of loneliness, occasionally accentuated by coolness of the team."

A general practitioner (F. Radermacher), who was admitted to an intensive ward with a severe heart attack, describes how he too at first felt that he was in "safe hands". As he asked the young doctor reading his ECG what he had, the doctor replied "an extensive recent anterior wall infarct". Ventricular tachycardia started a few seconds after receiving this information, and he had to be resuscitated. After a bypass operation, this doctor also experienced severe pulmonary oedema, which required intubation, tracheobronchial suction and artificial respiration. Although intubation and tracheo-bronchial suction whilst conscious are thought to be the most torturing procedures carried out in intensive medicine, the doctor experienced this completely differently: "I felt as though I was in heaven after suction and artificial respiration; as a result of it, I had lost the unsupportable respiratory distress which I had suffered with the pulmonary oedema."

Independent of the predominant feeling of being helped that many patients experience, there are basic situational stresses which can lead to frayed nerves over a period of time (Wendt, as quoted by Hannich) (table).

Most stressful factors on an intensive ward from the patient's point of view (M. Wendt)
Lack of assistance for orientation
Missing diurnal-nocturnal rhythm
Sensory monotony (constant rhythmical noise)
Sensory hyperstimulation
Chronic lack of sleep
Excessive illumination
Lack of communication
Separation from friends and relatives
The difficulties which arise in trying to maintain a continuous relationship with the treatment team have been quantified by film analysis. Wendt photographed 6 patients every 15 seconds over a total of 290 hours. On average something changed in the area of the patient every 104 seconds. On average 1-3 minutes were spent with the staff). This means that the patient has neither peace nor meaningful contact. Sych (ref. Hannich) found that "wish and complaint books" revealed that patients were particularly upset by too little personal contact with doctors, insufficient answers to their questions during ward rounds, and the uncertainty which arose after catching fragments of conversation.

The much publicized threatening nature of the "apparatus medicine", which is supposed to be extreme in intensive medicine, is probably far more likely to exist in the realities of relatives, the media and also the staff of the ward, than in the reality of the patient himself. Many patients report that they were not upset, and often not in the least afraid of the apparatus (monitors, respirators, infusion pumps etc.). The technical intervention was mostly not seen as threatening, but rather experienced as an element of security. G. Hensel who was a patient on an intensive ward writes: "The patient feels that he is supported, and his worth great when he recognizes that he is surrounded by such an extreme investment in technology. He immediately sees how expensive everything is. It reassures him to know that such a large amount of money has been made available for him, and does not raise anxieties. It is not the machines which shock him, but (occasionally) the people who use them." Anxiety can arise quickly if the patient senses that the staff are not fully conversant with the apparatus. The feeling of security is rapidly converted to insecurity and to feelings of exposure.

The effect of treatment in an intensive ward very much depends on the situation leading up to admission. Patients with chronic prior illness (e.g. chronic respiratory insufficiency) view the decompensation of their illness as insoluble and hopeless. If a spell in the intensive ward succeeds in recompensing them, this can also have a positive reaction summed up as: "I will make it this time as well."

Patients who are admitted to the intensive wards neither expecting to be admitted, or prepared in any way (after infarction, accident or postoperative complications) also do not initially experience any serious problems of adaptation. This type of reaction can be seen particularly well in coronary patients, who are often unconsciously regarded as "favorite patients" by the staff, as the majority stabilize within two or three days and can be transferred to the general medical ward. This initial "neutral" reaction to the intensive ward and the positive opinion are however limited: if a longer period is required for intensive therapy, the amount of criticism of the intensive ward gradually rises (from the third or fourth day).

In patients in whom the admission is planned (after major operations) a positive attitude is predominant, and the intensive care is well tolerated as an additional measure which reassures. This is however a rather different situation in that the aspect of intensive observation is more important than that of the intensive therapy.

In all cases, the patient experiences his situation as exceptional. "What does this extraordinary condition feel like? Whoever is admitted to an intensive care ward is there because of a life or death situation, regardless of what his chances are. ... Nobody on the intensive ward can ignore the fact that life is not a gift but rather a loan: that one (on this earth) cannot own anything; that he can only use it for a limited period. The patient has to come to terms with the thought that his period of loan can expire. For the first time, death is for him not simply a distant but a very close eventuality, perhaps even inevitable. He can no longer think without considering his own death ... In this extraordinary situation, nothing is as important as himself. Therefore one should not judge the enormous selfishness of the patient, but rather try to understand it. It belongs to the self-healing powers of the patient; it is an egoism hallowed by the will to live. It is part of the extraordinary situation that the patient feels his soul to be very seriously wounded." (G. Hensel, a former patient).

Klapp describes this disturbance of the self-worth as follows: "The most important factor is that of limitation of the ego functions (in the psychoanalytical sense of the term), which the patient experiences with pain, and which can make him very anxious. This anxiety can be understood as that before annihilation (and should not be confused with fear of death)."

The very real dependence in which the patient finds himself is experienced differently depending on the severity of the illness and the particular phase in its progress and has to be taken into account in the treatment plan. The degree to which the patient reacts to the disturbance of feeling of self-worth plays a very important part in the extent to which the patient "can allow himself to surrender, relax and regress, right back to the level which closely resembles the early childhood dependence situation, and then as clinical improvement occurs, to gradually progress from reliance on others to rehabilitation".
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My heart stopped
A 53-year old general practitioner describes his experiences as a patient on a coronary care unit.
"The publisher of this book, who is also a friend, asked me to share my memories of an intensive ward. I did not agree initially. As time went on, and I had time to think over what had happened during my illness, the easier it became to decide to write this report, simply to remove fear of the intensive ward from anyone who reads this book. I know that these units arouse anxiety, uncertainty and perhaps doubts in many people, including doctors.

After Christmas dinner in 1984, I suddenly experienced very severe pain in the cardiac area, with sweating and dizziness. The pain became worse and worse, and I became immensely anxious. I went to a mirror and realized that I was as white as a sheet, with beads of sweat on my brow, and I knew exactly what had happened - heart attack. However I did not want to believe it. I did not want to accept this could happen to me.

In the emergency department of the hospital, the duty doctor read the ECG and mentioned briefly and crisply that there was an extensive anterior wall infarction. I understood, and immediately lost consciousness. I was unconscious on the coronary care ward for 10 days. I was resuscitated and defibrillated several times.

I must mention that had the diagnosis been given without the 'full truth', it is possible that my shock, which could have been precipitated by it, would not have been so extreme. I myself have often been called to heart infarctions. All my patients survived up to hospital admission, as (as well as treating them medically) I also took great care to alleviate their psychological condition. I comforted them, and assured them that it was not as bad as they might imagine, and avoided directly answering the blunt question: 'Is it a heart attack?'. Everybody knows what infarction means and the dangerous situation it imports.

After I had come out of the very deepest level of unconsciousness, I found myself in a twilight state in which I had no idea where I was. I was not fully orientated, and thought that I was on an island, but was aware of my family visiting me on the unit. I can remember more clearly the transitional syndrome which I experienced; I accused my colleague of treating me incorrectly. I would not prosecute directly but would ask a mutually-known solicitor to determine the legal situation. Thank God, this transitional state did not last very long. I slowly became fully orientated, aware of my situation and surroundings, and was able to observe what was going on.

With time, I got to know many young, very concerned colleagues and lovely, kind staff on the intensive ward. I noticed that nurses and staff are all well-trained and idealistic young people. They work round the clock, know just what to do, are always ready to help, and are patient with and observant of those in their care. They suffer with the severely-ill patients that they look after. They are the first to be confronted with a deterioration of the patients. They know this, and often feel overwhelmed.

Many people prayed for me at this time and I am convinced that this helped me. I would like to refer to the randomized double-blind trial carried out by Prof. Randy Byrd of the University of California (see chapter on talking about God link).

Outsiders and also the media falsely judge the worth of the coronary care unit, with its highly technical equipment. I was very reassured by the intensive ward, both as a patient and as a doctor, as I knew I was under constant supervision, and that everything was there should there be a change in my condition. The apparatus had a very calming effect on me, and certainly did not make me anxious. I found minor things much more stressful, such as using a bed-pan, the bladder catheter, and prolonged infusion.

It was not only sterile and business-like on the coronary care unit. There were jokes and laughter. I met many people on my long journey on the intensive care unit, most of whom impressed me, because they were idealistic, open, and busy. Intensive ward sisters and staff told me that the responsibility was enormous and hardly bearable, and that they felt not only physically but also psychologically drained by this prolonged lack of personnel in the intensive care unit. They felt that they would lose too much of themselves if they were to work more than two or three years on such a unit.

On the second day after my coronary bypass operation, I developed severe pulmonary oedema, which resulted in the need for a further two days of intubation. I myself experienced what lung oedema really feels like. This tantalizing need for air, this lack of oxygen, gives rise to acute feelings of suffocation and constriction.

I lost consciousness during the reintubation, but as I came round I could breathe well with the help of the respirator and received fresh air. I felt as though I was in seventh heaven, and was so thrilled to have air once again. As I was unable to communicate by voice, I had to write my requirements on a board.

Why then have I written this? Very simply, to make the situation of an intensive ward known to my colleagues and the lay public, and to remove anxiety from the situation, whilst at the same time to make it know what a blessed place it can be. Intensive units certainly give immense help, and everyone should know that many idealistic people work on them."

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Doctor and staff (the treatment team)
The patient's "reality" and that of the team are usually discussed from a theoretical point of view. In fact the two realities should not be considered separately. There is a great danger in not taking into account the almost incomprehensible relationship which they have to one another. Klapp has been particularly concerned with the structure of the relationship between patient and treatment team, not only in theory but also practically in clinical settings, and emphasizes this point as follows: "This teaches that the patient can but artificially be considered alone, since he is always dependent on the context of therapy. This also applies to the second group in the relationship; that of the treatment team."

It is obvious that intensive medicine is viewed very differently by the doctors and by the nursing staff. This is due to the fact that each group attending the patient has different areas of competence, different responsibilities and different resources at their disposal.

Generally the doctor is involved at a higher level of activity, and he is required, and often forced, to take decisions with far-reaching consequences. His communication with the patient is concerned more with information rather than relationship, contact with the patient is considerably shorter - he is more able than nursing staff to escape from emotionally-charged situations. Probably he is more likely to experience success and less likely to feel guilty. On the other hand, the daily tasks of the nursing staff mean that they are more deeply involved because of the continuous contact with seriously ill and dying patients. This frequently results in "feelings of failure, disappointment, grief, guilt, but also anger" (B.F. Klapp).

Major stress factors for a treatment team on the intensive ward
1. High physical and intellectual stress
2. Problems of communications
3. Conflict situations (patient, team, relatives)
4. Time pressure
5. Anxieties (one's own and those of others)
6. Disappointment
7. Feelings of failure and of guilt
8. Confrontation with one's own mortality
Both groups carry out their work in a climate of highly tense expectation and maximum responsibility, along with particular competence and increased readiness to be involved. It is very rare to find somebody who is "used" to the extreme situations of intensive medicine, even after working within it for many years. It is an illusion to believe that one can maintain professional "affective neutrality" after working in an intensive ward for any period of time. More often defense strategies develop, which make it possible to carry on under such enormous stress. This stressful situation with the character of dilemma particularly affects the nursing staff who find themselves in this "chronic situation". The dilemma is that if the treatment on the intensive ward is successful and the patient returned to a normal ward, the nursing staff apparently have this success snatched from them, as the patient is lost to them. If the patient dies, his death is experienced as a blow and feelings of guilt arise.

There are a series of defense mechanisms which the treatment team can develop, which may of course distort the relationship with the patient.
"Avoiding" the patient, with an increased interest in the apparatus
"Denial" on the affective level, which results in over-playing of the stressful situations by sternness (quoting rules), distancing, cool tone of voice or displaced humor
Activism leading into depressive or grieving moods and the associated emotional withdrawal
Blame-shifting, which can be expressed for example by the fact that sisters do not report death (which is constantly present) as the largest single stress factor, but rather "difficulties in lifting patients" (B.F. Klapp)

The structure of the relationship between the patient and the groups of helpers is determined by two elements, one of which is asymmetry and the other polarity between active and passive.

Dimensions in the relationship of the patient to the treatment team ...
Dimensions in the relationship of the patient to the treatment team. Differences between the relationship of the therapy and roles (expectations) (B.F. Klapp)
The following types of relationships between patient and the treatment team appear fairly frequently and their recognition is helpful in the resolution of conflict between the two (Klapp):
1. The patient experiences the distance (see figure) between him and the team to an extent which is supportable. It is thereby possible to accept the treatment team allowing hope, surrender and the necessary regression to develop naturally.
2. The patient experiences the relationship with the treatment team with severe polarization. Feelings of being threatened result from this, followed by severe anxiety, associated with deep suspicion and a desperate attempt to maintain a sort of pseudo-autonomy. Such patients are seen as "difficult" in view of their inconsiderateness, their tightly-controlled behaviour and their know-all manner. If the team respond to this type of reaction with excessive dominance, insistence, competence and positional strength, the situation cumulates in a sort of vicious circle (see chapter on the "difficult patient" link).
3. The problems with another group of patients result from their difficulties in accepting their illness. These patients repress their anxieties and depression, continue to behave as before and appear calm. They fit into the situation in the intensive ward and act particularly appropriately. Many patients with cardiac infarction belong to this group. These patients are often regarded as "ideal patients" by the treatment team.
4. A further very critical type of response can develop when the patient regresses. These patients tend to show obvious infantile behaviour, they are overwhelmed by anxiety and feel completely dependent on the treatment team. They land up in a situation which is characterized by hopelessness, associated with severe anxiety, later denying signs of improvement and refusing to leave the intensive treatment. If the treatment team react to this with increased concern and excessive activity, anxiety becomes even more marked. The increased clinging behaviour of the patient can finally lead to rejection by the team.

The recognition of these types of reactions, their roots and effects, is the key to relationships within the team which avoid counter-transference of anxiety, emotion and thoughts.

It underlines the importance of communication within the treatment team. Klapp says, "the potential for empathy increases to the extent that the treatment team can expose and come to terms with their own weaknesses, anxieties, uncertainties, and admit their own needs for care. Thus, they can deal with the patient more flexibly and can modify rigid defense strategies and the pattern of relationship resulting from them."

The way in which a patient manages anxiety and stress which he experiences on the intensive ward, is to a large extent dependent on the behaviour and approach of the treatment team. 

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Linus Geisler: Doctor and patient - a partnership through dialogue
© Pharma Verlag Frankfurt/Germany, 1991
URL of this page: http://www.linus-geisler.de/dp/dp26_intensive_medicine.html
 
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