Comparison between home and hospital as the place of death for individuals with amyotrophic lateral sclerosis in the last stages of illness

Am J Hosp Palliat Care. 2015 Jun;32(4):417-26. doi: 10.1177/1049909114525259. Epub 2014 Mar 12.


Introduction: Healthcare providers need to better understand the end-of-life situations of in-home amyotrophic lateral sclerosis (ALS) patients to support their desires about where to die and to allow peaceful death.

Purpose: To clarify the situations of individuals with ALS in the last stages of illness according to the place of death as reported by home care nurses.

Methods: Minimum structured interviews were conducted with 14 home care nurses, and data regarding 14 ALS patients who died were collected.

Results: Six patients died at home, and eight died at the hospital. Many sudden deaths were observed among the patients who died at home, whereas pneumonia was often the cause of death in the hospital.

Conclusion: Providing family education and ensuring the availability of local family physicians are vital to meeting a patient's desire to die at home. Home care nursing should be introduced in the early stage after diagnosis to provide support to patients for timely decision-making.

Keywords: ALS; comparison; death; end of life; home care; qualitative.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Amyotrophic Lateral Sclerosis / psychology*
  • Cause of Death
  • Death*
  • Female
  • Health Education
  • Home Care Services*
  • Hospitals*
  • Humans
  • Interviews as Topic
  • Japan
  • Male
  • Middle Aged
  • Nurses / psychology
  • Pneumonia / psychology
  • Respiration, Artificial / methods
  • Terminal Care / psychology*