The following passage in Leo Tolstoy’s The Death of Ivan Ilyich highlights a few responses that patients may take to serious illnesses:
After his visit to the doctor, Ivan Ilyich was preoccupied mainly with attempts to carry out the doctor’s orders about hygiene, medicine, observation of the course of his pain, and all his bodily functions. His main interests in life became human ailments and human health. Whenever there was any talk in his presence of people who were sick, or who had died or recuperated, particularly from an illness resembling his own, he would listen intently, trying to conceal his agitation, ask questions, and apply what he learned to his own case.
The pain did not subside, but Ivan Ilyich forced himself to think he was getting better. And he managed to deceive himself as long as nothing upset him. But no sooner did he have a nasty episode with his wife, a setback at work, or a bad hand of cards, than he immediately became acutely aware of his illness. In the past he had been able to cope with such adversities, confident that in no time at all he would set things right, get the upper hand, succeed, have a grand slam. Now every setback knocked the ground out from under him and reduced him to despair. He would say to himself: “There, just as I was beginning to get better and the medicine was taking effect, this accursed misfortune or trouble had to happen.” And he raged against misfortune or against the people who were causing him trouble and killing him, for he felt his rage was killing him but could do nothing to control it. One would have expected him to understand that the anger he vented on people and circumstances only aggravated his illness and that, consequently, the thing to do was to disregard unpleasant occurrences. But his reasoning took just the opposite turn: he said he needed peace, was on the lookout for anything that might disturb it, and at the slightest disturbance became exasperated. What made matters worse was that he read medical books and consulted doctors. His condition deteriorated so gradually that he could easily deceive himself when comparing one day with the next–the difference was that slight. But when he consulted doctors, he felt he was not only deteriorating but at a very rapid rate. And in spite of this he kept on consulting them.
The patient’s perception of his illness is a subject that does not seem to be commonly explored in the day-to-day operation of a medical practice or hospital. It is often a subtle matter that may not be easily elicited with open-ended questions as the words to describe one’s feelings and beliefs may be difficult to find (in contrast with Tolstoy’s simple and elegant, third-person description of a patient’s experience). Nonetheless, I think good physicians are able to perceive differences in belief and troubled thoughts from behavior or answers to questions inconsistent with expected responses.
Some medical schools discuss this topic in the context of cultural competency with respect to particular ethnic groups or religions that may have beliefs that influence medical decisions, sometimes in disagreement with the expectations that the physician may have for a patient in his or her position. However, understanding a patient’s perception and attitude toward illness should not be limited to these groups. I noticed on the first installment of my licensing exams that there were many questions regarding the appropriate response a physician should make to a patient making an unconventional choice, and the recommended approach usually involves “exploring” the patient’s understanding of the situation. However, how does one do this? I have been told by others that I am a good listener and have a keen perception for subtle differences in behavior and thought in others, and yet I wonder how challenging this process of “exploring” will be, especially with limits on time spent with each patient and the incredibly alienating nature of disease. I hope that as a physician I will be able to fulfill the same role in illness that priests hold in spiritual crises: the role of the listener, mentor, and guide, someone to whom a person may reveal her most frightening and troubling thoughts and in whom she may find a path out of the darkness. I wonder, with managed care, time constraints, and malpractice litigation, how much of this aspect of the patient-doctor relationship has been needlessly sacrificed.