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Linus Geisler: Doctor and patient - a partnership through dialogue   © Pharma Verlag Frankfurt
... Conversations in intensive medicine
The relatives
Communication within intensive medicine
Looking after the relatives
Died 15th August 1977 -
released 1st December 1979
The relatives
This "bitter" death announcement appeared in a Frankfurt newspaper giving notice of the funeral of a 15-year old who was resuscitated after a swimming accident, and treated for over 2 years in an intensive ward.

For many years, the relatives of patients on the intensive ward have been left to their own devices and neglected. Information of the greatest import (diagnosis, complications, progress or even death itself) have been (and are still) hurriedly given, unsupportable briefly, often whilst standing in the corridor next to the intensive ward. This behaviour results from an unwillingness to recognize and understand what elements make up the reality and the experience of relatives of patients on the intensive ward:
The relatives often suffer more about the unknown fate than the patient himself.
Relatives have an enormous need for information about the condition, therapeutic measures and prognosis, which can only occasionally be fully satisfied.
Information is usually given in a great rush by various members of the treatment team.
Misunderstandings or contradictory statements from the treatment team lead to anxiety, uncertainty, suspicion and aggression.
As a result of misrepresentation of intensive medicine by the media, the team member who gives information is the one who is regarded as the "bearer of bad tidings" on whom are heaped anxieties, anger, bad temper and aggression.
When a close relative is receiving treatment in an intensive ward, not only the patient but also the relative suddenly finds himself in a critical phase of life.
Premorbid disturbed relationships within the family are suddenly sharply accentuated.

Typical types of reactions from relatives can be observed if the progress extends over a prolonged period (F.G. Müller quoted by Hannich).

Basic rules for the care of relatives of patients on the intensive ward
 1. Basic premise: presence - empathy - acceptance
 2. Reduce the shock of the "initial confrontation"!
 3. Gentle, simple and warm-hearted speech
 4. Give hope
 5. Use appropriate setting for discussion (not corridor)
 6. Take the various phases of reaction of the relatives into account (denial, overactivity, resignation?)
 7. Watch for the reactions within the family set-up
 8. Give similar information to all relatives
 9. No contradictory statements from various team members 
10. Attempt to integrate family members into the treatment team
These are of importance for the treatment team:

Phase 1:
Relatives seek to deny the initially unbearable diagnosis and avoid believing that the illness exists.

Phase 2:
The relatives know that the patient is extremely ill, or will die, but do not believe it and rush off into various forms of excessive activity.

Phase 3:
Discouragement follows overactivity. The relatives recognize the full gravity of the situation, but hypersensitivity and suspicion arise in this stage.

Phase 4:
Hypersensitivity and suspicion become the source of a multitude of difficult questions and reactions: "Is everything possible being done? Why is the patient on the respirator? Why are so many machines in use? I am not satisfied with the sister/staff/doctor; I am not getting enough answers to my questions."

Phase 5:
This is characterized by both rational and emotional resignation.
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Communication within intensive medicine
Nowhere else has communication such a high priority as on the intensive ward; it is a basic necessity for life. However there is also no other area within medicine where so many obstructions act against it:
Organic and spiritual effects, as well as the effects of the disease itself
Obstructions to communication caused by therapy itself (sedation, intubation, artificial respiration)
Disturbances in the relationship between patient and staff
Speech barriers (medical jargon, foreign patient)
Time pressure, overwork and lack of training within the treatment team

The major aims of communication in intensive medicine are:
Placing orientation markers: this means informing the patient of time and place, about the objectives and the probable length of the treatment, and the name and functions of the various members of the treatment team
Reconstruction of the patient's feeling of self-worth. Its destruction is a hall-mark of the reality of the patient on intensive treatment
Minimize anxieties: those that predominate are those of separation, loss, suffering and the future
Offers for contact: being there, offering contact and projecting security, giving and being aware of non-verbal attempts at contact
Give hope; never ignore the "principle of hope"; this must be brought in even in the most serious situations

Even in situations where there is no other solution, communication fulfils the function of "being present as the other goes down" and then becomes the most important form of care in intensive medicine.

The cardinal sins of communication in the intensive ward (and not only there) are all those verbal and non-verbal remarks and forms of behaviour which increase the feeling of abandonment and anonymity of the patient, which increase his already disturbed feelings of self-worth, which make him uncertain, which induce additional anxiety and imply disinterest in what becomes of him.

Successful communication on the intensive ward depends to an inordinate degree on the ability to consciously communicate the 4 messages of speech (information, relationship, self-revelation and appeal). Here the aspects of relationship (how we communicate something to others) are more important that those of content (what we share with others). Communication is one of the basic needs of mankind and the desire for it is especially marked in these extreme situations. Communications can take on the function of a "final anchor", on which everything depends, and which holds everything fast.

The desire for communication on the part of the patient on the intensive ward does not include only information about the actual situation and the future eventualities. Since life itself is threatened on the intensive ward, and death is an immediate reality, there is a desire to review the events of past life, if not to judge but to consider. These reflections about the life history are an important mechanism for coping with the acute situation and should involve the treatment team, each of them ought to possess the ability for active listening. The manner in which the patient presents, in these reflections, the things that he, helpless and dependent as he is now, was able to do only a short while ago, is sometimes rather touching. This must be seen as an attempt to stabilize his threatened feelings of self-worth.

An inexperienced person can easily underestimate how much the seriously ill patient, who apparently is not able to communicate, can in fact receive and register. It therefore makes sense to continue to approach the patient with verbal and non-verbal signs, even if the patient shows no obvious reactions. There is much evidence to show that even in this situation the flow of communication is not one-sided, but that it is also "received".

There are five methods of communicating between the patient and the treatment team:

Skin contact
If there is no handicap to communication, it occurs over 10 communication channels. The following series of figures show which combinations of disturbances are especially likely to arise on the intensive ward and how the patient can be contacted nevertheless.

1. Patient has no handicap to communication, 2. He is unable to speak, 3. Patient is intubated and hard of hearing, 4. Mimic, 5. Patient is intubated and has facial injury, 6. Patient is intubated and can understand neither speech nor writing (foreigner), 7. Patient is intubated and paralyzed, 8. Patient is intubated and is blind, 9. Skin contact, 10. Patient is intubated and unconscious

Writing is of particular importance to the patient who can no longer use speech (due for example to intubation). Felt-tipped pens (rather than pencils) and paper or blackboard and chalk can be utilized. Studies have shown that this form of communication requires a relatively large amount of time (on average 5-9 minutes) from the moment that the desire to communicate is expressed to the determination of what has been written. This includes finding and providing materials and allowing time for writing. Communication boards which include recurring patient needs, and can be touched to produce the words "yes" or "no", result in a much better appreciation of requirements. Even patients who are unable to speak or move can give, for example, eye signals which at least give a positive or negative answer, for example, blinking = yes, or eyes closed for a longer period = no. Obviously in these situations only closed questions can be asked.

Examples of patients on an intensive ward, most of whom were intubated or on the respirator:
Doctor, sir, not so quickly Doctor, sir, not so quickly.
Please wash with cold water ... Please wash with cold water. I am not as ill as you think. I must get off of the tube.
The illness is so awful. The illness is so awful.
I got more air previously ... I got more air previously, when I was on the machine. Rhythm somewhat faster.
I want to die at last today. I want to die at last today.
My daughter has sold me, but I'm not dead yet. My daughter has sold me, but I'm not dead yet.
Get out, get out. Get out, get out.
A cardiac catheter was inserted ... A cardiac catheter was inserted from the my neck into the heart when I was on the medical ward in May and June. I am also allergic to plaster and injections, and had to go into the skin department at Essen. Temporarily. It is so rattly in my neck and lungs, that it sounds as if something is there.
The staff are busy. The staff are busy.
There is a series of simple rules which should govern discussions between doctors and patients on the intensive ward.

Initial ground rule: Use the patient's name when speaking to him, and introduce yourself to him by name.

G. Hensel, previously a patient on an intensive ward, writes: "Every word which is directed to the patient on the intensive ward, every single word, however simple, helps him to escape from the feeling of loneliness and neglect. There is no other word that the patient likes hearing as much as his own name. Although nobody really wants to admit it, everybody is blessed to a certain extent by hearing his name. If his name is forgotten, mistaken or mispronounced, he experiences this as a body-blow. This feeling understandably becomes even stronger in the extremely exceptional situation on the intensive ward. The person who is spoken to by name is no longer anonymous, he is no longer a number; he is being treated as a person in his own right, he no longer has to remain in anxiety-creating anonymity. A further aspect is that it is particularly helpless patients who dread being mistaken for another; one of the most basic anxieties is that of being mistaken for another."

If the patient is addressed by his own name, he takes this as a signal that he is recognized as a person with his own particular problems in a specific situation. Doctors and staff can also take steps to break down anonymity and background anxieties by clearly naming themselves and describing their function. Orientation is made particularly difficult for this patient by the system of intensive care with the high numbers of staff of various functions, shifts and a rapid change over in the treatment team. If the patient is to stay for a prolonged period on the intensive ward, it is very important that he is able to name at least one doctor and one member of the nursing staff as a person of reference.

Second ground rule: Offer help with orientation as soon as possible

Time should be taken to inform the patient about the place, the time of day and the objectives of care in the intensive ward, as well as checking that there are no misunderstandings. There is nowhere else where the patient is so likely to be unsure of the time as on an intensive ward. Much restlessness due to the confusion of day-time and night-time can be prevented by this simple information. The unreasonable rule that patients should not take any "personal belongings" on to the intensive ward is still widely practiced, and whether or not the patient needs his watch is overlooked.

The objective of the care in the intensive ward should be explained as simply as possible. It is sufficient to use terms such as "the illness can be controlled better", "in order to make you better as rapidly as possible", "to deal with the illness as well as possible " etc. The patient also should be informed about the likely duration of the therapy. If this cannot be stated with any degree of certainty, it can still be useful to tell the patient that his stay will be "as short as possible".

It is also very important to tell the patient that his relatives have been informed, and what has been said. Uncertainty about this is particularly stressful and unsettling. Telling him that "we have phoned your wife and told her that you are doing well" is calming in two senses.

Third ground rule: simple and comprehensible language

This is particularly important on the intensive ward where the ability of the patient to register is limited by the particular severity of his illness and by therapeutic measures. Every word takes on a weight of its own, and every incomprehensible or misunderstood statement can induce intense anxiety. It should be obvious that during a ward round on the intensive ward, the patient should only be spoken to and not about. Discussing the patient, additionally in medical jargon, increases his feeling of isolation, releases further anxieties and can be misinterpreted as signifying that the treatment team is uncertain.

Although it is not possible to prevent discussions about the patient, he should always have a simple explanation about the subject matter under discussion; for example: "We are not being secretive but are thinking how we can best organize your treatment".

Fourth ground rule: explain what is happening and what is planned

Even the smallest procedure (for example taking blood, central venous pressure measurement) should be explained to the patient in general terms if he has not undergone it before. This reduces misunderstandings and erroneous conclusions and prevents avoidable anxiety. One of the cardinal sins of communication is that a patient undergoes an investigation, of which the objective and possible meaning is not explained beforehand.

Fifth ground rule: positive language

Anxiety, resignation and depression are characteristic of the attitude of the patient on the intensive ward. Every piece of information that can be formulated as a "positive news" or "good news" is particularly important. The patient does not only want to see but also to hear that he is out of the most severe danger zone. This information does not have to be detailed, but is even more convincing if it can be simply and clearly formulated:
"The operation went well",
"The X-ray didn't show anything bad",
"I am very satisfied with the progress you are making."

Illustrative (picture) language is often more appropriate to describe the trend of the progress of an illness than long-drawn out clinical findings. Phrases such as "land is in sight" or "you will soon be able to fell trees again, even if at first only seedlings" are often more reassuring of progress than information about haemodynamic or biochemical parameters.

As in oncology, it is very important to take so-called small problems of the patient on the intensive wards very seriously, and to deal with them carefully. It is these "small problems" which can be even more distressing than the major medical problem. The psychological dynamics must be taken into account: the patient who is aware that his comparatively small complaints are dealt with as much care as the other medical problems, probably experiences his situation as much less hopeless. Taking care of the small problems reduces the pressure of the greater difficulties.

A patient, previously on an intensive ward described this sort of event as follows. In the next bed was an Italian who was unable to understand what was going on around him. The single word which he continually repeated, although it was not understood at first, was "graveyard". Everything that was happening to him seemed to him to be a further step in the direction of the grave. Various attempts to calm this extremely anxious patient failed. The solution of this distressing situation occurred when a quick-witted nurse brought the Italian his breakfast with the words "Not graveyard, but mangiare!", and afterwards the surgeon enquired about the quality of this breakfast. "If the doctor has no greater concerns than about how my breakfast tastes" surmised the Italian, "then I cannot be so bad as I thought".

Sixth ground rule: give hope

Everything should be done to increase the hope of a patient on the intensive ward, where it is of particular importance. This includes not only noticing small advances in progress, but also informing the patient of them. It is equally important not to show one's own concerns in the face of setbacks or unfavourable progress. The patient needs a stable and safe and effective team, that can be cheerful and even react with humor at appropriate times.

When the patient asks about "the meaning of life" or "final things", or wishes to speak about life and death, these subjects should not be avoided. When else should a person start to think about those things which he has usually put aside during a whole life-time, than when his life is extremely threatened? In these situations, the doctors and staff are required more to listen actively and to be present than to find answers to questions which often cannot be answered anyway (see chapter on talking about God link).

Ground rules for carrying out discussions with patients on the intensive ward
 1. Offer opportunities for intensive contact!
 2. Use all sorts of methods for communication (speech, written word, mimic, skin contact, symbols)
 3. Offer help with orientation
 4. Inform (place, time, team, treatment)
 5. Do not induce anxiety, instead make constant efforts to remove anxieties
 6. Simple, comprehensible, positive language
 7. Speak to the patient, not about him
 8. Give hope
 9. Support patients' feelings of self-worth
10. Do not avoid discussions about life and death
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Looking after the relatives
The relatives are usually unprepared to see a member of their family receiving treatment on the intensive ward, and most of them show a shocked reaction. Their behaviour is emotional to a large extent. It also depends on the quality of the relationship with the sick person, and is influenced by the negative picture of intensive medicine represented by the media.

Looking after the relatives is part of the complete concept of treatment and should not be regarded as an extra heavy load or duty. To care for relatives also passes care onto the patient, as the crisis in which the patient finds himself is usually also a crisis for the relatives. Carefully and adequately prepared relatives can provide a source of strength to the patient, and its effectiveness should not be underestimated. On the other hand, animosity to the treatment team and the intensive ward on the part of the relatives can make therapy very much more difficult. The ideal situation is one in which the relatives have been successfully integrated (in the broad meaning of the word) into the team.

The doctor, who is often at the limit of his physical and emotional resources due to his work on the intensive ward, repeatedly finds himself confronted with the apparently insoluble duty of building bridges with a relative whom he might regard as difficult or an additional load. In doing it, he is confronted with the most varied reactions and forms of behaviour, including aggression, grief, helplessness, insecurity, guilt, anxieties, blame and claims for compensation. The doctor possibly finds himself regarded as an enemy resulting from the picture projected of the intensive ward by the media. At other times, relatives appear to have childish, naive, almost magical illusions "that everything is possible if all of the resources of intensive care are used" (Monika Dorfmüller). Perhaps they will also be hounded by thoughts of publicity during a prolonged death, as for example Franco in Spain or Tito in Yugoslavia, in which details of the prolonged death were followed avidly.

Enormous difficulties can arise in trying to manage discussions in such psychologically complex, emotionally charged situations, and balancing the requirements of the patient, the rights of the relatives as well as explaining the necessary medical eventualities as plausibly as possible. The reason why so many discussions with relatives are avoided or fail is that it is no longer possible to find a common reality between the treatment team and the relatives.

Every discussion between the treatment team and relatives needs to create the feeling of presence, availability, empathy and acceptance. The next step is to consequently break down understandable anxiety and provide comforting information. Relatives definitely expect an immediate involvement in their helplessness and the situation in which they find themselves.

The initial step is to buffer the shock of the first confrontation with the sick patient. The relatives in fact "are those who are the most shocked, even more than the patient himself. They are shocked by the amount of equipment, within which it may even be difficult to find their sick relative" (B.F. Klapp). This alarm can be reduced if the relatives are well informed before taking them to the patient. The doctor should be present during this initial meeting, amongst other things to be available to immediately answer questions which arise. The discussion should be carried out in comforting, simple language, which also always encourages hope.

It should be attempted to keep all of the relatives informed at about the same level of information, in order not to create mutual insecurity. Where there are many relatives, it is useful to find a single, major discussion partner who can ensure that comforting information is evenly and appropriately distributed throughout the family to put their minds at rest. This does not have to be the next-of-kin.

It is also important to determine in which of the previously mentioned "phases" the relatives are situated, in order to be able to understand their questions and behaviour, to tolerate apparently irrational reactions, to recognize the significance of accusations and aggressive behaviour, as well as preventing escalation of emotional tension between the relatives and the treatment team. Whether the relatives are to be regarded as "friend" or "foe" of the treatment team depends to a very large extent on the treatment team itself. 

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Linus Geisler: Doctor and patient - a partnership through dialogue
© Pharma Verlag Frankfurt/Germany, 1991
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