Abstract

Objective: The objective was to survey patients’ conceptions of autonomy or self-determination, and their feelings about participation in medical management decisions in the advanced stages.Subjects and methods: Out of 116 patients registered on the intractable disease system in Japan as a patient with amyotrophic lateral sclerosis in 2004 in the Mie Prefecture, Japan, 21 gave their consent and participated. The author visited their homes from October 2004 to March 2005, performed examinations and semi-structured interviews. Fourteen were eligible for analysis on his or her diagnosis, communication ability or cognitive function, and were followed until all of the patients who had advance directives either died or revoked them .Results: Nine patients indicated that they did not fully understand the word “autonomy” . Substituting the word “self-determination” as an analogous word to “autonomy” and asking the question again, eleven patients provided a response about their interest in maintaining self-determination. When asked to provide a value for respect-level using percentages, 10 of 11 affirmed a high percentage of self-determination .Conclusion: This report validates that some Japanese patients have a desire to control their treatment and management. While recognizing the small sample size, the authors suggest that neurologists involve their patients in medical management decisions regarding their ongoing care