In some cases, the patient is kept in the dark because his relatives are afraid that he will be shattered if he knows the truth. Here are some examples of what family members often say to persuade the doctor to tell the patient as little as possible:
- “I know my mother… She wouldn’t be able to handle this news,……”
- “She should be allowed to live in peace for however long she’s got left!”
- “Dad has always said that, if he ever got “one of those nasty things”, he’d make an end of himself without thinking twice”.
- “She hasn’t asked any questions, so she doesn’t want to know anything”.
When the future outlook is very bad, this fear is totally understandable. But fear of the truth almost never concerns the patient’s reaction alone; very often, it is the family members who are very afraid of the new situation that will arise at home. They are afraid that full awareness of the gravity of the disease will force them to change their roles within the family, and that they will not manage to support their loved one properly. This reaction is also justifiable and human, but it concerns the family members, not the patient herself. And it is, above all, the patient who needs help, something which can also be provided by adequate information.
When the patient is not informed, the situation may continue to proceed fairly well for a time, provided that both of the following conditions occur:
- the patient herself asks her family members to deal with her health problem, as she is too afraid or “uninterested”;
- the patient feels physically and psychologically well.
However, it is extremely rare for both of these conditions to occur together. Moreover, even if they do at the beginning, things may change over time; if the patient asks for information and this is not promptly given, the situation may even turn bitter (“You’ve all been taking me for a ride!”).
If this happens, it is plainly wrong to continue to “manage the case” by speaking to the doctors in the absence of the patient and taking decisions without consulting him.
On the other hand, when faced with very bad news, even a patient who asks to be told the truth about his condition will often construct his own personal version of what he hears; he may therefore suppress those parts that he finds “unacceptable”, in that they are too unpleasant and emotional. Again, this is an extremely natural and frequent reaction, which psychologists explain in terms of our “self narrative”; in other words, our mind tends to give a personal meaning to everything that happens, so that we can in some way accept it.
This problem exists even in the English-speaking world, where complete information is generally provided directly. Indeed, a study conducted on 1200 cancer patients in a very advanced stage of their disease, and with no prospect of being cured, appeared in America’s most authoritative medical journal, the New England Journal of Medicine. The study found that from 70% to 80% of patients participating in experimental trials of new drugs said that they were hoping to be cured. And yet, all the patients had been very explicitly informed, both verbally and in writing, that their condition was absolutely incurable (Weeks J. Patients’ expectations about effect of chemotherapy for advanced cancer. New Engl. J. Med 17: 1616-1625, 2012).