title: End-of-life decision making in respiratory failure. The therapeutic choices in chronic respiratory failure in a 7-item questionnaire.
abstract: BACKGROUND
  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.
  
  
  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.
authors.affiliation: Unità Operativa STIRS, Ospedale San Camillo-Forlanini, Rome, Italy. dagmarr@tin.it
authors.forename: Dagmar
authors.initials: D
authors.lastname: Rinnenburger
authors.forename: Mario Giuseppe
authors.initials: MG
authors.lastname: Alma
authors.forename: Domenico
authors.initials: D
authors.lastname: Bigioni
authors.forename: Giuseppe
authors.initials: G
authors.lastname: Brunetti
authors.forename: Carlo
authors.initials: C
authors.lastname: Liberati
authors.forename: Vinicio
authors.initials: V
authors.lastname: Magliacani
authors.forename: Gianluca
authors.initials: G
authors.lastname: Monaco
authors.forename: Lino
authors.initials: L
authors.lastname: Reggiani
authors.forename: Giovanni
authors.initials: G
authors.lastname: Taronna
authors.forename: Luca
authors.initials: L
authors.lastname: Cecchini
mesh_terms: D001290:Attitude; D018450:Disease Progression; D006801:Humans; D007558:Italy; D010102:Oxygen Inhalation Therapy; D010166:Palliative Care; D029424:Pulmonary Disease, Chronic Obstructive / Q000628:therapy*; D011658:Pulmonary Fibrosis / Q000473:pathology; D012131:Respiratory Insufficiency / Q000628:therapy*; D016414:Resuscitation Orders; D011795:Surveys and Questionnaires; D014139:Tracheostomy