Abstract
This study clarified the course of illness and the difficulty of care for a patient with amyotrophic sclerosis (ALS) and Huntington's disease (HD). The patient (Mr. A) was a man in his 60s. Data were collected from semi-structured interviews with Mr. A's wife and one visiting nurse. Mr. A was diagnosed with ALS in 201X and diagnosed with HD immediately afterwards. After respite admission, his medical condition deteriorated remarkably. He was hospitalized emergently for aspiration pneumonia, but died soon after. The period from diagnosis to death was 9 months. Mr. A's feelings felt by his wife and the visiting nurse were categorized as follows: [Shock of diagnosis and no way to help having two intractable diseases], [Fluctuating feelings regarding decision-making for symptom management], and [Psychological pain and unstable feelings], [Anxiety about heritability]. In addition, the following 4 categories of care difficulties were identified: [Difficulty regarding the nature and treatment of two diseases], [Difficulty of accepting his intention to refuse a gastrostomy], [Increased care burden], and [Complex procedures for receiving designation to receive subsidies for medical expenses related to intractable diseases]. For patients with both ALS and Huntington, it is necessary to focus on ALS, which is a rapidly progressing disease, while assessing the status of both diseases and providing information to the patient and his/her family to support decision making for the timely symptom management. It is important to reduce the burden of family care.
