title: Circumstances surrounding death and nursing difficulties with end-of-life care for individuals with ALS in central Japan.
abstract: OBJECTIVE
  This study aimed to clarify the circumstances surrounding death for people with amyotrophic lateral sclerosis (ALS) in Japan and difficulties in providing home-care end-of-life nursing for these individuals.
  
  
  METHODS
  A questionnaire was mailed to the directors of 709 home-care nursing agencies located in central Japan.
  
  
  RESULTS
  Of 232 questionnaires returned (response rate 32.8%), 49 reported treating someone with ALS. Overall, 31% of these patients died at home, whereas 63% were admitted to hospital from a few days to months preceding death. Respiratory insufficiency was identified as the cause of death in 73% of cases, 45% of the deaths were sudden, and 27% of the deaths involved CO2 narcosis. Analysis of the reported nursing difficulties resulted in five categories: lack of adaptation to the disease or disease progression by the patient and/or their family, involvement with family, how to select/deliver care, decision-making and communication, and poor collaboration with other practitioners.
  
  
  CONCLUSIONS
  Family care and family education are important to supporting the end-of-life process for people with ALS. Use of advance directives and collaboration with other related practitioners are recommended to enhance communication linked to psychological care and informed consent.
authors: Department of Nursing, Graduate School of Health Sciences, Gunma University, Japan. ushi2@health.gunma-u.ac.jp
authors: Mitsuko
authors: M
authors: Ushikubo
authors: Koichi
authors: K
authors: Okamoto
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000451:nursing* / Q000503:physiopathology; D003643:Death; D005260:Female; D006801:Humans; D007564:Japan; D008297:Male; D008875:Middle Aged; D013727:Terminal Care