This section is devoted to the relatives and friends of patients in cases in which the problem arisesas to whether, how and how much the patient should be informed.
This problem, when it arises, may be very delicate and complex, and there are no general rules that can be applied to every situation, although the law says that the patient should always be informed.
Our health is our most precious possession. For this reason, patients want explanations of their condition. Essentially, there are three things that they want to know:
- what the problem is,
- how serious it is,
- what can be done.
Even patients who do not ask many questions always want to have at least some idea about these three aspects. Some patients are very curious and insist on having scientific explanations. Others activate a sort of “defense mechanism” and avoid asking questions about the first two aspects; after the doctor’s initial explanations, they focus on the third question. All patients, however, need a little time, attention and explanations that are true and credible; the worst thing is to be kept in the dark, knowing nothing. Correct and proper information strengthens the doctor-patient relationship and makes it easier to take the most appropriate decisions.
The problem of informing the patient is all the more difficult when the disease is very serious. We can distinguish three conditions in increasing order of difficulty.
- When the probability of achieving a cure is very good, it is easy to inform the patient fully. “Things have gone well; it was a nasty disease – cancer – but we caught it in time. We can’t be absolutely sure that it won’t come back again, but the cards are all in your favor and we don’t think you have to have any other therapy”. Here, the message is substantially very positive, though the doctor has not hidden the potential gravity of the situation. The doctor says exactly what the problem is, what needs to be done and, especially, not done, and says that the probability of cure is very high.
- A more difficult situation is when the disease is curable, but there is a high risk (say, above 50%) that the tumor will return. Even though recurrence of the disease, if it happens, often means that the cancer is incurable, having a 50% chance of being cured leaves room for a certain optimism; at the same time, the patient understands the need to undergo preventive therapy and focuses his attention and commitment on this.
- The situation of the patient with advanced, disseminated cancer and without hope of being cured is decidedly difficult. To inform the patient fully and honestly, the doctor should say:
“It’s a carcinoma – a malignant tumor. Unfortunately, it has already spread to various parts of the body. There are treatments that you can have; if they work well, they may be able to keep the disease under control, even for a long time, but it’s no longer possible to be cured”.
This “truth” is difficult to bear, and in many cases it is this type of news that is mostly feared. Here, there is no word of reassurance that the patient can cling to. The only part that leaves any room for hope (“There are treatments that you can have.”) is completely overshadowed by the idea that the cancer is “incurable”.
This bad news automatically triggers a reaction of denial and disbelief both in the patient and in his/her relatives and friends. Often, they get angry with the doctor. This is natural. When such devastating news is received, the first reaction is denial, which is then followed by desperation; later, this generally gives way to a process of coming to terms with the situation and the determination not to give up without a fight. These are the typical phases that a human being goes through in the face of adversity.
With regard to the issue of informing the patient, it should be pointed out that the instinct for self-preservation can prompt sick people to “pluck up” courage and determinationthat they never had when they were healthy. This can turn the situation upside down; the patient’s relatives and friends, who were expecting a completely different reaction, may be taken by surprise. This makes things easier in the family. Indeed, it is not rare for doctors to hear the patient’s relatives say, “You know, Doctor, he/she is keeping up the spirits of the whole family…”.
The internal transformation caused by disease has also been expressed by writers. Below is an insightful extract from the book “Approssimato per difetto” by Gina Lagorio.
“A sick person is no longer a man in the usual sense of the word; he has rapidly raced through stages that normally require years of application; philosophy, history, religion take years to settle in the heart of a healthy man; in that of a sick man, they settle at breakneck speed; mystical asceticism, stoical renunciation, truth that is free from selfishness: all of this comes with sickness”.