摘要：Introduction. The transition from paternalistic medicine to a healthcare culture centred on the patient’s decision making autonomy presents problems of communication and understanding. Chronic respiratory failure challenges patients, their families and caregivers with important choices, such as invasive and non-invasive mechanical ventilation and tracheostomy, which, especially in the case of neuromuscular diseases, can significantly postpone the end of life. Material and Methods. A 7-item questionnaire was administered to 100 patients with advanced COPD, neuromuscular diseases and pulmonary fibrosis, all of them on oxygen therapy and receiving day-hospital treatment for respiratory failure. The objective was to find out whether or not patients, if faced with a deterioration of their health condition, would want to take part in the decision making process and, if so, how and with whom. Results. Results showed that: 90% of patients wanted to be interviewed, 10% preferred not to be interviewed, 82% wanted to be regularly updated on their clinical situation, 75% wanted to be intubated, if necessary, and 56% would also agree to have a tracheostomy. These choices have been confirmed one year later, with 93% of respondents accepting the questionnaire and considering it useful. Conclusions. It is possible to conclude that a simple questionnaire can be a useful tool contributing to therapeutic decision making in respiratory failure.
关键词：chronic respiratory failure; COPD; neuromuscular diseases; pulmonary fibrosis; therapeutic decisions;intubation; tracheostomy; end of life.
