Objective: To construct and validate a questionnaire that could be used to investigate the clarity of the medical information received by patients and their satisfaction with it, as well as their knowledge and opinions concerning advance directives and their associated variables.
Methods: We administered a 30-item questionnaire to 157 adult patients affected by progressive neurological, oncological and nephrological diseases.
Results: The results indicate the good reliability and structure of the questionnaire, which identifies three factors: "information and knowledge" (alpha .91), "need for physical and mental support" (alpha .89), and "determination and decision-making capacity" (alpha .75). The amount of time dedicated to medical communication proved to be one of the variables determining the patients' knowledge of their disease and their capacity to express their needs, neither of which changed over time. The oldest patient, a man in the most advanced phase of disease, was the most fragile in expressing his needs and making decisions. Advance directives, living wills, active/passive euthanasia and therapeutic obstinacy' at most only marginally reach the cognitive and emotional sphere of the patients.
Conclusion: Patients' needs unequivocally lead us back to the primary matrices of medical act: paying attention to patients, offering adequate time, listening to him/her concerns and asking when no question emerges. This so obvious evidence does not match with the increasingly techno-oriented attitude of health professional, who also have to guarantee more productivity in less time. The quality of medical information received by patients impacts their decision making process, particularly in the oldest people. In Italy, as well as in other countries, it is necessary to pay more attention to this issue, keeping in mind that nobody can really choose without knowing exactly what it is going to happen.