シンポジウム4：神経難病（ALS）の地域連携の課題
神経難病（amyotrophic lateral sclerosis）の地域連携の課題 ―臨床現場の問題点―
2017 年 34 巻 3 号 p. 269-272
詳細
2017 年 34 巻 3 号 p. 269-272
We discuss issues related to the following three aspects in the care of amyotrophic lateral sclerosis (ALS) : cooperation during the shift to home care, collaboration between care teams and medical organizations, and locations for long–term treatments after home care becomes impossible. In the shifting stage, the sooner referring patients to their primary doctor is, the better, and it is particularly important to provide information not only on their medical condition but also on their state of acceptance of the illness and their will about treatments such as artificial ventilation. During the home–care period, care teams in different fields have necessarily to collaborate. The ability of care managers is highly required so as to revise care plans according to disease progressions and potential problems and to organize home meetings for an integrated support. Also important are hospitalization for medical treatments, caring complications or respite care, visits of doctors in different branches, and the arrangement of medical agencies in these cases. When home treatments are no longer viable, relocation is necessary, but the reception of patients needing artificial ventilators or aspirators is still often hesitated. Some measures to differentiate the facilities that do or do not receive such high–care patients are considered mandatory, such as by the difference in their revenues.
Considerable problems against continuation of home care arise for ALS patients and their families who regret unwanted installation of tracheostomy positive pressure ventilation, as well as due to complications by frontotemporal lobar degeneration. Medical specialists need to provide sufficient information to help patients understand their disease and care conditions. Close communications between them and community staffs are essential for the patients themselves to decide how to be treated, based on their own perspectives on life and value, and to live and face the end of their life as they wish.
