Palliative care has not been focused on noncancer yet. Amyotrophic lateral sclerosis (ALS) is a fatal, rapid progressive, and intractable neurodegenerative disease. Individuals with advanced ALS cannot perform activities of daily living by themselves, but their mental awareness remains clear. Individuals with ALS experience various pain soon after diagnosis, and a multidisciplinary team approach is needed because their pain can become complicated Caring for individuals with ALS needs to both start and end with palliative care in the physical, psychological, social, and spiritual aspects. The Japanese Ministry of Health, Labour and Welfare enacted the Principles of Policy for Rare and Intractable Diseases (nanbyo), which were the first set of such principles to be established in the world. This chapter describes the palliative care in Japan, from the perspectives of nursing and nanbyo measures. Also, three unique characteristics of ALS care in Japan are mentioned: the high level of disagreement between patients and family; the high rate of ventilator use compared with Western countries; and the low consumption of morphine. Healthcare practitioners need to apply the notion of the total pain to provide palliative care to individuals with ALS and acknowledge the challenges of providing timely symptomatic management.
Part of the book: Highlights on Several Underestimated Topics in Palliative Care