ABSTRACT
<b>Background:</b> The authors, in collaboration with a nursing college and healthcare organizations, initiated a project, "Tama District (a suburban area in Tokyo) End-of-life Care Networking" for nurses, in order to provide networking opportunities for nurses who would like to work together in their local community. A survey was conducted to identify those nurses' needs before initiating this project. <b>Result:</b> The first networking meeting was held based upon the survey results, and 39 nurses participated. The participants were from 14 hospitals, six home-visit nursing stations, and one home care support office in a northern area of Tama District and its surrounding areas in Tokyo. After having this meeting, it was identified that these nurses were highly motivated in providing better end-of-life care, and they had strong desires to network together and to exchange information about challenges and opportunities in their practice. <b>Conclusion:</b> Future issues and implications included the following: (1) Providing continuous opportunities for nurses with such meetings, and refining and updating programs to meet their needs; (2) Facilitating face-to-face relationships among individual nurses in this local community in order to facilitate better collaboration; (3) Initiating local activities that may improve and enhance nursing practice for patients and families who have health issues in their daily life.
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