Abstract
This article describes the end of life of seven people with amyotrophic lateral sclerosis (ALS) under the care of a hospice. The reasons for admission to hospice were for the management of distressing symptoms and the support of families who were unable to continue care at home because of the increased burden of care and/or illness of families. The sufferings experienced by the patients with ALS included disability due to muscle weakness(100%), pain(100%), discomfort (100%), dyspnea (71%), difficulties in communication (71%), drooling (43%), insomnia (43%), loneliness (43%), swallowing difficulties (28%), clenching the mucosa inside the cheek (28%), anxiety (28%), the perception of being a burden to the family (28%), and concerns as to why they had developed ALS (28%). Opioid medication was effective in the management of dyspnea, pain and discomfort. The results showed that special attention should be paid to frequent changing of the patient's position during nursing care, including the passive movement of joints and massage. The use of communication aids was essential to allow people with ALS to communicate effectively and, together with support of joy of the patients and family, the quality of life could be improved. End of life care within a hospice is a useful alternative option for persons with ALS, extending hospice care in Japan from people with advanced cancer to other disease groups. Palliat Care Res 2010; 5(2): 137-143
