Patients' evaluation of information provided by medical doctors on the invasive ventilator for amyotrophic lateral sclerosis. An analysis of a survey of patients and their families in Japan

The study aim was to evaluate by ALS patients' satisfaction regarding information about invasive ventilators provided by medical doctors. Semi-structural interviews were conduced for 12 cases (11 patients and 9 family members provided information) at three areas in Japan. 1) Most patients were unsatisfied with the information by doctors; 2) some cases felt strong distrust of doctors' attitudes; 3) more than half of the cases complained of insufficient information. This study suggests that in the informed consent for ALS patients, doctors' negative attitudes to life prolongation adversely impact on ALS patients. Roles of service providers, patients and family members should be reconsidered for cases of ALS and other incurable diseases.