Circumstances and Signs of Approaching Death in Patients With Amyotrophic Lateral Sclerosis Undergoing Noninvasive Ventilation in Home Care Settings.

The purpose of this study was to elucidate the circumstances and symptoms of patients with amyotrophic lateral sclerosis (ALS) using noninvasive positive pressure ventilation (NPPV) in whom death was approaching, to understand how to provide palliative care to dying patients with ALS receiving NPPV management. The participants were 6 home visiting nurses who were head or subhead nurses of a home visiting nursing agency. Data were collected conducting individual semistructured interviews and then group interviews. The results were based on qualitative analysis of the circumstances of death and prognostication and showed 5 categories: difficulties with knowing about approaching death, several signs and symptoms of knowing about approaching death, importance of feeling prepared and provision of palliative care to die at home, death caused by accident, and fate determined by the caregiver's ability. Further research is needed to collect rich data about predicting approaching death to improve end-of-life care for NPPV-dependent ALS patients who do not receive sufficient benefits from NPPV.