admin July 4, 2019

Abstract

Research has documented the influence of ALS patients families’ attitudes on patients’ decision to accept or reject TIV (tracheostomy with invasive ventilation), a treatment that in many cases will allow them to live long enough to experience locked-in syndrome (LIS); under Japanese law the use of a ventilator cannot be terminated once it is essential to a patient’s survival, so to choose TIV means to choose the possibility of entering a locked-in state. Previous studies have not, however, elucidated the changes in family members’ attitudes that take place after they receive pertinent information about the social systems and services available to them. This study aims to fill this gap by collecting and analyzing patients’ and family members’ narratives. In Japan, about 30% of ALS patients utilize TIV. This rate is much higher than in most other developed countries. Patients’ narratives illuminate the psychological and especially the contextual factors of their decision-making. Many Japanese patients who currently use a ventilator say that their family members encouraged them to prolong their lives through ventilation. These family members have done so because patients are able to use long-term ventilation for only ¥1000 (around $11) per month, and can also access the latest communication devices and round the clock caregiver services in their homes at very low cost. Japanese caregivers who are supported by social systems and services including communication assistance (systems, training methods, funding), empowering factors such as patients’ associations, care provided by people outside the patient’s family, and a public nursing care system are able to encourage patients to decide to use longterm ventilation (provided that they are aware of the possibilities offered by these social systems and services).

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