title: "Living with dying": the evolution of family members' experience of mechanical ventilation.
abstract: BACKGROUND
  Communication with families about mechanical ventilation may be more effective once we gain a better understanding of what families experience and understand about this life support technology when their loved ones are admitted to the intensive care unit (ICU).
  
  
  METHODS
  We conducted in-depth interviews with family members of 27 critically ill patients who required mechanical ventilation for > or = 7 days and had an estimated ICU mortality of > or = 50%. Team members reviewed transcripts independently and used grounded theory analysis.
  
  
  RESULTS
  The central theme of family members' experience with mechanical ventilation was "living with dying." Initial reactions to the ventilator were of shock and surprise. Family members perceived no option except mechanical ventilation. Although the ventilator kept the patient alive, it also symbolized proximity to death. In time, families became accustomed to images of the ICU as ventilation became more familiar and routine. Their shock and horror were replaced by hope that the ventilator would allow the body to rest, heal, and recover. However, ongoing exposure to their loved one's critical illness and the new role as family spokesperson were traumatizing.
  
  
  CONCLUSIONS
  Family members' experiences and their understanding of mechanical ventilation change over time, influenced by their habituation to the ICU environment and its routines. They face uncertainty about death, but maintain hope. Understanding these experiences may engender more respectful, meaningful communication about life support with families.
authors.affiliation: Department of Critical Care Medicine, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre and Interdepartmental Division of Critical Care, University of Toronto, Toronto, ON, Canada.
authors.forename: Tasnim
authors.initials: T
authors.lastname: Sinuff
authors.forename: Mita
authors.initials: M
authors.lastname: Giacomini
authors.forename: Rhona
authors.initials: R
authors.lastname: Shaw
authors.forename: Marilyn
authors.initials: M
authors.lastname: Swinton
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: Cook
mesh_terms: D000368:Aged; D016638:Critical Illness; D005192:Family Health; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D012121:Respiration, Artificial