Communication and Informed Consent ... a Story

Someone knocks at the door. My secretary pops her head in. “Excuse me doctor, the patient who tried to get in touch with you for an appointment is in the waiting room. Can I show him in?” The door closes, only to open again thirty seconds later. I get up and stretch out my hand to shake the newcomer’s. “Please, take a seat.” He sits down in front of me. His facial expression is hard, and tense. His tone is angry, biting. “There wasn’t even the suggestion of a meeting with me. I was told nothing. I only became aware of the diagnosis by reading my discharge letter from the ward where I had undergone surgery not only on my lungs, but which had also involved my heart. A minor surgical procedure,” he says sarcastically. “The surgeon contacted my wife and daughter and, without a minimum of compassion, told them that the situation was extremely grave and that probably I had about a month to live. You all pay lip service about how to communicate bad news, respect for patients, the attention that should be given to the psychological aspects ... but it’s all just talk, not something you actually put into practice.” I feel the weight of these words, which are thrown at me in rapid succession almost without stopping to breathe. An embarrassed silence conceals my discomfort, a surprise that I had not expected. Alone, thin, his wife and daughter in the waiting room, his face dark, eyes resolute with no intention of giving up despite what he knows, however vaguely. “Until a week ago I hadn’t understood, or rather, no one had taken the time or trouble to explain my illness to me. “It was not sufficient to know that I have cancer and that the situation was very grave. It wasn’t nearly enough.” I feel unprepared, stunned. I have difficulty even choosing my posture and facial expression. This more-than-justified aggression does not facilitate the start of useful communication, and I realize that my many years of announcing and re-elaborating bad news can only partly help me in this situation. I try to understand what he expects of me. Does he want me to complete the information given to him a few days before by a surgical colleague regarding the characteristics of his illness? Illustrate treatment proposals, times, methods, collateral effects? Does he wish to continue to express his anger and irritation? Using hand gestures and eye contact to accompany my words, I assure him that we have all the time necessary to talk and that I am available and willing to listen for as long as he wants. This seems to calm him. His tone of voice becomes slightly less aggressive. “Naturally, you understand how this has affected me. As soon as I arrived home from the hospital, I spoke to my family doctor who came to see me immediately. At that time I still didn’t know that my wife knew about the state of my health, and I was worried about how I could break this terrible news to her. However, when I started talking to my family doctor, my wife was present, and I realized that she already knew everything, or rather, she knew the dramatic news regarding my survival. My doctor advised me to get an appointment with you. Now, what can and should we do?” The atmosphere in my office is now more relaxed; at least that objective has been reached, considering that talking with a patient who has advanced lung cancer about therapeutic proposals is not easy or simple when you factor in the results usually obtained. However, I begin to reelaborate the bad news relating to his diagnosis and to describe the clinical experiments currently being carried out. The patient is an educated man and completely understands the concepts of standard therapy, therapeutic protocol, and clinical trials. We talk for a long time about various aspects of the treatment, the possible discomforts it can provoke, the effects it can have on his working life, his family life, and his relationships. He asks if his wife and daughter can join us ... which they do. The meeting continues for another twenty minutes or so, and the patient accepts to take part in a controlled clinical trial. A long time afterward, he tells me that it took him some time to understand the type of person that I was—because, from our first meeting, I tended to express cautious optimism. I offered possibilities and was very informal. He felt the need to establish with certainty that I wasn’t excessively optimistic and that I would always be totally honest with him. I had quite a few doubts about the matter of honesty for quite some time (and also with some difficulty), asking myself certain questions—such as what was the probability of survival or the percentage results of the therapy? I have to confess that I have always tried to move the vision to other aspects, because presenting percentages cannot communicate certainty. Today, therefore, I still try