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In March 2009 we sent out the questionnaire to the 4,478 board certified neurologist to ask about the palliative care in ALS. 1,495 anonymous responses (33%) have been returned. 21% of the respondents prescribe morphine, which shows a drastic increase from the 14% in the 2007 survey. However, 77% of them had only less than 5 patients, 47% of them studied and trained themselves. It illustrates that most of the neurologists are not well experienced with morphine, and that they are isolated in practice. However, 47% of the respondents answer that they would prescribe morphine whether or not the national insurance pays. As for the withdrawal of the permanent ventilation, 21% of the respondents were asked by their patients to turn off the ventilation. While 24% of the respondents believe that the withdrawal right not should be promoted, 46% believe that such right should be granted if the decision made by the patient and/or his/her family members can explicitly be recognized. The result illustrates that the physicians are also divided. It may be the time to lay the foundation for the Japanese ALS physicians to discuss openly and candidly together to deal with the wants and wishes of their patients.

The survey report about the end-of-life care with ALS patients of the ALS physicians in Japan