| Autor: |
Mitsuko Ushikubo, Chieko Tomita, Ayako Inokuma, Masaki Ikeda, Koichi Okamoto |
| Zdroj: |
International Medical Journal; Aug2013, Vol. 20 Issue 4, p446-449, 4p, 2 Charts |
| Abstrakt: |
Objective: Amyotrophic lateral sclerosis (ALS) usually causes death within 2-5 years after onset. It is said that the faster the disease progression, the more difficult it is to support the patient. The purpose of this study was to clarify the illness course and circumstances of death of individuals with ALS who died within one year of starting home care. Design: A retrospective case study was used. Methods: Six ALS patients who had home care nursing and died within one year after discharge from hospital M were included in this study. Data were collected by examining medical records and conducting minimum-structured interviews of home care nurses and discharge liaison nurses. Qualitative-inductive analysis was used. Results: Six patients died within 3-12 months after diagnosis. Four used NPPV soon after diagnosis. Two patients, who died at home, were found dead in the morning by family members. The NPPV mask was displaced for one of those patients. The other patients died in the hospital from respiratory insufficiency or other respiratory complications. Patients with rapidly progressive ALS and their family members had poor understanding about the disease. Collaboration between family physicians and hospital physicians is important for explaining the patient's condition and prognosis. Nurses need to collaborate in teaching how to provide care for the families. Early detection to reduce unexpected death caused by displacement of NPPV equipment is particularly important in home settings. Conclusion: It is necessary to prepare for end-of-life care at the transition from hospital to home in order to support patients in living with a positive outlook. [ABSTRACT FROM AUTHOR] |
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