[What must we do for patients with ALS in the process of their decision making on TIPPV?]

Patients with amyotrophic lateral sclerosis (ALS) must stand at crossroads when their disease advances causing respiratory failure; they have to decide whether or not to use tracheal intermittent positive pressure ventilation (TIPPV). Because the decision may devide their lives into alive or dead, appropriate information should be provided to the patients and their family before they make the decision. The information they would require include not only on medical care but also on social or economical issues if they should be on ventilator dependent life. In 2004 I had a research about the presenting the diagnosis of ALS. Words of patients and their family taught me that how poor the information we have given on presenting the diagnosis about ALS. In the United States, social workers assist patient decision making. In Japan, on the other hand, it has not been acknowledged that professions other than physicians should also be concerned in the patients making decision on medical treatments. Physician alone cannot deal with the needs of the patients and their family in the decision making. Not only physicians but also co-medical staff, for example, social workers, must take a part of the process of providing appropriate information.