Tracheostomy with Invasive Ventilation for Patients with Amyotrophic Lateral Sclerosis in Japan and USA: Comparative Study

Sponsor: Columbia University

Location(s): Japan


In The United States and Western Europe, the rate of TIV is low, about 3-5%. Only a small minority of patients plan long in advance to have TIV when their breathing becomes unsustainable. Others do not decide about TIV even when their breathing starts to deteriorate.  In fact, many do not have a plan in place when a breathing crisis occurs and immediate action is required. In some studies, over half of ALS patients who ended up with TIV had emergency intubation in the absence of any advance directive. In contrast, rates of TIV are much higher in Japan. Until rather recently in Japan, it was customary for the neurologist to order TIV without consulting the patient’s wishes, although for the most part  that has changed today.  In a recent study, about 30% of Japanese patients had TIV even when they were provided information beforehand and consulted about their wishes. This is particularly striking when one considers that TIV discontinuation is legal in the United States and Western Europe, but illegal in Japan once initiated. A collaboration of Japanese and American investigators proposes to conduct surveys in both countries of patients, caregivers and neurologists.  The study goal is to develop a more comprehensive understanding of decision-making and perceived advantages and disadvantages of TIV in the view of the various stakeholders, and implications for improved clinical care.