A common trajectory
A common illness trajectory was found in 29 of the 35 patients. This consisted of 5 stages: an “existential crisis” at diagnosis, a “focus on therapy” during the first treatment period, relative peace of mind during the period when the cancer was not visible on x-ray films, another existential crisis at the diagnosis of recurrence of the cancer, and the final crisis on receiving the news that no further treatment was available or feasible.
The observed false optimism about recovery did not seem to be present to the same extent in all 5 stages. After patients were informed that they had cancer, there was immense despair, resulting in an existential crisis. Optimism usually developed during the first treatment period and was most prevalent in the third stage, when the cancer was not visible on x-ray films and the patient felt “cured.” Optimism tended to vanish in the fourth stage, when the tumor recurred, but could develop again, although to a lesser extent, during further courses of chemotherapy. Gradually patients would realize the facts about their prognosis, partly because of physical deterioration and partly through contact with fellow patients who were in a more advanced stage of the illness and were dying.
Concealment of prognosis
In the consultation in which physicians informed patients that they had cancer, it was usually also mentioned that there was no cure. Details of the likely progress of the disease and about prognosis were rarely given. Patients were told that “it is extremely difficult to give any indication of the general prognosis because each patient is unique.” In most cases, this statement was followed immediately with an offer of chemotherapy. Uniqueness of individual patients was re-emphasized with statements such as “We never know how an individual patient will respond to this therapy.” Physicians said that they could provide more information about prognosis after the results of chemotherapy were available.
In actual practice, however, when “clean” x-ray pictures suggested that chemotherapy had been “successful,” patients did not request further information on prognosis, believing that they were cured. Later, when the inevitable relapse occurred, physicians told patients that each relapse made treatment more difficult and the prognosis worse. Physicians would state again that an individual prognosis would depend on the results of future treatment and tests. Physicians gave information about the expected course of illness only when they had a clinical reason (after diagnosis and with each tumor relapse) and did not explicitly formulate the prognosis until a patient's tumor was no longer considered treatable and the patient was referred back to the general practitioner.
Emphasis on treatment
As indicated earlier, a characteristic feature of the consultation in which patients were told that they had cancer was a rapid transition from the provision of bad news to a discussion about what could be done about it (see vignette 2). By far the most time and energy were spent on “treatment” options. Not only did the physician instigate this, but the patient eagerly complied and was keen to discuss treatment options. When a patient was told that the cancer had returned, he or she would immediately want to know, “What can you do about it, Doctor?” Throughout the treatment and remission periods (second and third stages), discussions during consultations were almost entirely restricted to issues such as the planning of chemotherapy sessions, side effects, and test results. Both parties colluded in focusing on the treatment calendar2
while ignoring the long term (prognosis and the likely shape of the illness trajectory). Although physicians and nurses openly discussed patients' invariably poor prognosis with each other—for example, at staff meetings—it was generally understood that this knowledge was not public and that nurses must not convey it to patients. In contrast, nurses could discuss arrangements for treatment and test results with patients at all times.
Vignette 2: The physician's role in collusion
The consultant sighs with relief when Mr H has left the consultation room. “This is one of the most difficult things in my work. Just before the therapy, I told him that his life expectancy was short and that this was the last thing I could do. He and his wife were crying the whole time. Because they were very upset, I could not continue my explanation. That's why I wanted to talk to them again today. You saw what happened. They asked me again whether other therapies are available. Must I ruin their life by being honest? By telling them things again that I have already told them? Or just leave it? That's a huge problem. I tell them once or twice what the situation is. If people want to know more, they must ask for it. I leave it to them.”
“Do you find it difficult to break bad news?” the researcher asks.
“I think people must know what their situation is, but I find it difficult. What are the effects of what I say? That's my problem.”
Physicians thought it was their duty to mention the expected course of the disease when there was a medical occasion and if the patient asked for it, which rarely happened. The patients' not asking was interpreted by physicians as not wanting to know. For the physicians, it was difficult to find a balance between what to say and what not to say. The emotions of the physician played an important part (see vignette 2).
When patients persisted during their illness trajectory in not wanting to know, physicians felt uncomfortable and showed a more active behavior in trying to force a breakthrough in the awareness of the patient on the approaching death. But often patients made it clear that they did not want to know the medical truth (see vignette 3). So we discovered that the false optimism about recovery was not only due to the reluctance of physicians to give clear information about the prognosis but also to the part that patients played themselves. Patients had more influence on what was and was not said in the consultation than might be expected.
Vignette 3: The patient's role in collusion
Mr J is lying in bed when the consultant sees him on his ward round, accompanied by a nurse and by the researcher.
“How are you today?” the physician asks.
“I'm fine, Doctor,” says Mr J, smiling. “We are planning a vacation with the whole family for the summer.”
“That's very nice.” The consultant waits for a moment. “I don't know how to put it...”
“We would like to go abroad,” says Mr J cheerfully.
“Mr J, I really think we have to talk. I have told you that the tumor has not responded to the chemotherapy, and there are no other treatments. Actually, the tumor is growing. We could try radiation therapy, but the chance...”
“Please, Doctor, will you stop it? When I fell ill, they told me this. When the cancer returned, they told me again. This week you told me, so this is the fourth time. Doctor, let's try the radiation therapy, and leave me now.”
Vignette 4: Good news consultation
Mr K and his wife look nervously at the consultant, who is studying the new x-ray pictures, comparing them with previous ones.
“Marvelous,” says the consultant, turning toward Mr and Mrs K. “Complete remission! Look, I'll show you. This is where the abnormality was.” He points to a white spot in an old picture and moves on to another one. “And that's how it looked halfway through treatment. Half of the tumor had disappeared by then, and now there's nothing to be seen. Your lungs are clear.” He looks cheerfully at Mr K, who gets up and bends over to look at the pictures himself.
“Nothing more to be seen,” says Mr K, and to his wife, “Can you see that, Dear?”
She nods happily.
“So it's looking good?” he asks.
“Very good,” says the consultant. “Mr K, if I didn't know you, I wouldn't know where the abnormality had been. There is nothing to be seen in the last picture. Of course, there could always be a little cell left somewhere that we cannot see in the picture. That's always possible. Only time will tell.”
The physicians often used ambiguous words. For example, the word “treatment” had a more positive meaning for patients than it had for physicians. If the physician said that “this tumor can be treated” (meaning that there are treatments that prolong life), the patient heard that “something can be done about it” — in other words, that he or she can be “cured.” Apart from such unintentional ambiguity, there was also intended ambiguity aimed at an incorrect overly optimistic interpretation by the patient of the results of chemotherapy. Examples are “The therapy has had the optimal effect,” “The x-ray pictures show no more abnormalities,” and “Your lungs are clear” (see vignette 4). There were also forms of nonverbal ambiguity resulting from things being done. Patients could not comprehend that the efforts and expense involved in the intensive treatment they got could be “useless” and hence did not usually result in a cure. Even if physicians explicitly stated that the treatment was palliative and merely life-prolonging, the curative aura surrounding it gave another impression.
Knowing and not knowing
Initially patients and relatives colluded with physicians in maintaining a “recovery plot”: yesterday the patient was healthy, today the patient is ill, but tomorrow the patient will be better again, thanks to the efforts of the physician and the patient, with support of carers.
Although all parties individually would have occasional doubts about the validity of this plot, they would not verbally acknowledge this so as not to be seen as undermining the others' trust in future recovery. This public adherence to the recovery plot, however, could not be maintained to the end of the illness trajectory. When patients had a relapse or when they and their relatives observed how the condition of fellow patients deteriorated, doubts could be discussed. But even then, patients and relatives would do their best to adhere to the recovery story to spare each other anguish (see vignette 5).
Vignette 5: Knowing and not knowing
The researcher visits Mr L at home. He is dying. Mrs L tells the researcher, “I've now accepted the fact that it's over. When the doctor told us 2 weeks ago that the tumor had become resistant to chemotherapy and that nothing could be done anymore, I suddenly realized how serious the situation is.”
“Did you not know it before?” asks the researcher.
“How shall I say it? I knew, and I didn't know. When he got ill, the doctor said that he had a tumor that had spread and that he never would get better. But then they started to talk about chemotherapy. I thought, thank goodness, something can be done about it. And I held onto that. It really didn't sink in. Later on I thought, he's going to get better, otherwise they wouldn't go to all this trouble for him, would they? He got a lot better, and everything was going fine, and I was full of hope again. I thought, it's all going to be all right. The day the doctor said that the tumor had come back for the third time and that there was no treatment option left, I suddenly realized the truth.”
In the final stages of the illness trajectory, adherence to the recovery story often resulted in a situation in which the patient was aware of the poor prognosis but did not explicitly acknowledge this. Depending on the context, this awareness could seem to be present at one moment but virtually absent the next. These patients seemed to be involved in an ambiguous process of knowing and not knowing at the same time. The result was that it was possible that, in later stages of the illness trajectory, physicians and patients both knew that cure was impossible and death imminent but, even so, told each other recovery stories.
Recovery stories and the optimism sustained by them helped patients and relatives to endure the treatment phase, but it was extremely painful when later it became clear that this optimism was based on illusions. Moreover, it made it more difficult to accept imminent death, and it obstructed “saying farewell” in time and making necessary arrangements. Obviously, this false optimism also hindered patients in making sensible and well-considered treatment decisions that are not based on fear. Retrospectively, this was a reason for regret both for patients and relatives (see vignette 6).
Vignette 6: Regret
The researcher visits Mrs L at her home, some time after Mr L has died. They talk about when he was in treatment.
“What I find very difficult,” says Mrs L, “is that my son cannot get over the fact that he went on holidays last Christmas, when he could have spent time with his father and that the whole family could have been together. He could easily have taken holidays later on.”
“Perhaps,” she continues cautiously, “perhaps the doctors should have told us more often and more clearly that it was the end. I didn't hear them say that. My son would never have gone away last Christmas. Perhaps we would have realized sooner how serious the situation actually was.”