Case

- It hasn't quite sunk in. She functions as if intoxicated. Every now and then the harsh reality comes through. Cancer! What about the children now? And my husband? She freezes. It cannot be, it cannot be true.

Both cases above refer to the same patient, at the same moment, but the two descriptions are in no way similar. "Case 1" contains pure information about the patient's medical status. "Case 2" describes her experience. The difference between information and experience is presented here in

an extreme way. In communication, both aspects are present at the same time. Therefore, the second axis of the communication compass consists of "information" and "experience." The two aspects of communication must not be confused.

The head nurse notifies the doctor that Mr. Hermans has a request for euthanasia. When the doctor questions him, he is surprised. In a moment of great distress he has exclaimed, "Please let me die, I can stand this no longer." He had never meant this to be taken literally. He does not want to die. Certainly not now, that his new pain medication starts to work.

The typical mistake is that an expression of the patient's ongoing experience (despair) is taken as information (a request for euthanasia). Information and experience are not interchangeable. A request for information should be answered with information, and an expression of experience is to be answered by acknowledging the patient's experience.

Mr. Jones is a retired physician. He is treated for prostate cancer. After his last consultation with the urologist he feels upset. The urologist told him, "According to the statistics of prostate cancer, you still have 13 years to live. According to the statistics for the healthy population you have, 15 years to live"

However correct and reassuring the information may seem to be, it upsets the patient because it ignores his experience of fear. It is erroneous to assume that information counteracts fear. Experience needs recognition. That does not always imply more time. It would have been entirely different for the patient if the doctor had started his sentence with "I understand you are afraid", followed by exactly the same information.

"Doctor, I want to know, is it cancer?" "You don't need to be worried so much. Medicine nowadays has a lot more means than it used to have to cure your condition."

The opposite is a pitfall as well. When asked for information, one should not try to escape delivering bad news by focusing on the emotional experience. Only correct information about diagnosis and possible treatment is the adequate response to this question.

1.1.3 Information

Giving information is challenging. Often we think we have done our job when we have explained it all to the patient, only to be disappointed that he did not understand our explanation. The word "giving" in "giving information" is misleading. When I give you my watch, you have it and I have lost it. When I give you information I do not lose anything, and there is no guarantee that you have it. Information is not something you can "give."

With regard to information, the clinician is in the role of the expert. That is what he has studied for. The patient (usually) does not have that background. The consequence is that the patient receives the information in a very different frame of reference.

It is important to find out what the patient's frame of reference is. How does he perceive his situation? What does he know and how does he understand what he knows? Effective transfer of information starts with probing where the patient is. Assuming that the patient automatically understands the information you give him is a very effective recipe for misunderstanding and frustration (on both sides).

"Lets have a look at the results. The blood tests seem OK and on the scan nothing has changed. Only the result of the pathology test is problematic; it says you have a high grade B-cell lymphoma." "So I don't have cancer after all?"

It is important to present information in a clear, and for the patient understandable, language. Do not, as illustrated above, start with the less important and seemingly reassuring. Do not try to make it feel better than it is. Bad news in inherently bad. Start with what is essential and only then move into details, if the patient still understands you. Then, check how the patient has understood your message. Especially in the case of bad news, the patient may get lost in his experience and no longer hear what you are saying. Often it is necessary to repeat information time after time. Since you never know how the other receives the information, always check.

1.1.4 Experience

John remains in bed the whole day. Lung cancer. He hardly looks up as his wife enters. She has brought his favorite food and his newspaper. She tries to cheer him up. "I'm dying" he says without looking at her. "You have to stay positive," she says, "the doctors are trying their best to help you." He sighs.

In this story the patient's emotional experience is the key element. John does not say much, but his silence speaks louder than words. The tragedy is that it is not heard.

In the domain of personal experience the clinician is no longer the expert. The patient is the expert of his own experience. Consequently it is not the clinician's responsibility to "solve" the patient's experience. This is not easy since we are trained to solve problems. But for John's dying and his sadness there is no solution. Nobody can take away the emotions. They are a natural part of what is going on and there is nothing to solve. Helpers hate being helpless. But the fact that you cannot do anything to solve the problem does not mean there is nothing you can do.

The physician hears from the nurses how depressed John is. He waits for a quiet moment to enter his room. "I'm dying," John says. The silence is hard to bear. "Don't fool me doctor, I know it, I feel it." "Yes John, you're dying," the doctor says. No news is broken. They both know. Silence again. The doctor does not avoid John's eyes. "Are you afraid?" "No, not afraid, I'm so angry. I'm too young to die. My wife and children, they need me. I cannot die." "Whom can you talk with?" "Nobody, my wife always tries to cheer me up. She does not want to hear. Everybody is telling me to stay positive. I'm sick of it." Finally John has the chance to talk about his experience without being told what to do and what to feel. There is not much to respond, but to provide a space for expression. After a while he stops talking. "Thank you doctor for listening," he says, "I needed that so much."

What to do when there is nothing that can be done: be present. The first element needed for presence is safety. One cannot share an experience unless there is enough safety. Confidentiality is only a part of that. In the middle of a busy ward one cannot share more than a reassuring smile. For a serious conversation the patient must know you have the time to listen. The depth of the conversation corresponds to the time frame provided.

A second element is space. Experience does not need a solution, it needs space. John needed a space in which he could share his feelings. What he did not need were all those people who tried to talk his feelings out of his head. Sometimes you hardly need words, as long there is a space in which experience can be expressed.

Time and space are not enough. Recognition is also needed. The patient has to feel that he is heard and acknowledged in his experience. In John's case the doctor asks if he is afraid, acknowledging his fear. It turns out that he is not afraid but angry. Clarifying someone's experience allows the feeling of being understood. The only criterion for understanding is that the patient feels understood.

1.1.5 Coping

In order to understand the patient's perspective it is important to know what strategies people have to deal with illness and the associated emotions. In psychological terms this is called "coping."

There are two domains of coping, corresponding to the axis of "information" and "experience." One is problem-oriented coping, the other emotion-oriented coping. Most important is to realize that people differ in their coping styles.

1.1.5.1 Problem-Oriented Coping

When the doctor tries to explain to Peter what is wrong, she notices he hardly listens. "I don't really want to know," Peter says. "You probably know what is best for me. Just tell me what to do."

Lisa comes to the doctor's office with a huge pile of papers, from the Internet. All night she has been searching for information about her disease. In Canada, she knows, they started an experimental therapy. "Can I have that here too?"

Some people want to know all about their disease, some prefer not to know. Both coping styles are to be accepted.

Louise has finished her third cycle of chemo therapy, with no results at all. The doctor informs her he is running out of therapeutic options. Louise insists. She wishes to fight to the very end. The doctor reluctantly admits, there is still a possibility for treatment, but there are many side effects and very little chance of benefit. "I want it,", Louise says, "I don't want to give up."

Maria comes on time for her appointment. For more than 2 months she has been suffering from severe pain, she reports. The doctor does not understand why she did not come earlier. "Well," she says, "we had this appointment, so I waited."

In coping with problems some people are very active, others are more passive. In most cases different coping strategies only need to be understood and accepted.

1.1.5.2 Emotion-Oriented Coping

In the case of a severe disease not all problems can be solved immediately and some problems are clearly beyond any solution, as in the case of the death of a loved one. Apart from coping with the problem, we also need to cope with the emotion (see Fig. 2).

People have basically two strategies to deal with emotions, either to distract their attention away from it or to attend to the emotion. Both can be done alone or together with others. Examples of distraction are doing something pleasant, chattering, reading a book or listening to music. Some of these strategies can be problematic. The other way to deal with emotion is attending to it, giving it a space to heal. Examples are crying, talking with someone who listens, walking by the sea or in the woods, or keeping a diary.

None of these strategies is superior to the other. It is with the degree of liberty to move through the four quadrants of the diagram that one can be more comfortable with uncomfortable feelings. The first task of the caregiver is to respect the preferred coping styles of the patient. Only then he can invite the patient to broaden his repertoire and to try other coping strategies.

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