Studies suggest that dying at home is a more favorable experience. This study investigated where amyotrophic lateral sclerosis (ALS) patients die and the patient demographics associated with dying in an acute care facility or nursing home compared to home or hospice. Centers for Disease Control and Prevention Multiple Cause Mortality Files from 2005 to 2010 were used to identify ALS patients and to classify place of death. Multinomial logistic regression was used to determine the association between patient demographics and place of death. Between 2005 and 2010, 40,911 patients died of ALS in the United States. Place of death was as follows: home or hospice facility 20,231 (50%), acute care facility (25%), and nursing home (20%). African Americans (adjusted multinomial odds ratio (aMOR) 2.56, CI 2.32-2.83), Hispanics (aMOR 1.44, CI 1.30-1.62), and Asians (aMOR 1.87, CI 1.57-2.22) were more likely to die in an acute care facility, whereas females (aMOR 0.76, CI 0.72-0.80) and married individuals were less likely. Hispanics (aMOR 0.68, CI 0.58-0.79) and married individuals were less likely to die in a nursing home. In conclusion, minorities, men, and unmarried individuals are more likely to die in an acute care facility. Further studies are needed to better understand place of death preferences.
Keywords: End of life care; amyotrophic lateral sclerosis; place of death; quality of life.