[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].
OBJECTIVE
The study aim was to evaluate by ALS patients' satisfaction regarding information about invasive ventilators provided by medical doctors.


METHODS
Semi-structural interviews were conduced for 12 cases (11 patients and 9 family members provided information) at three areas in Japan.


RESULTS
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.


CONCLUSIONS
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.
Kitamura
Yayoi
Y
Musashino Women's University.
Tsuchiya
You
Y
Tanaka
Emiko
E
Tamai
Mariko
M
Shimizu
Tetsurou
T
D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000628:therapy*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D012122:Ventilators, Mechanical