Our objective in this research was to better understand how family members of critically ill patients make sense of mechanical ventilatory life support, in that hope of improving our communication about life support technology and become more informed about whether and how to offer support.
We conducted in-depth interviews with family members of 27 critically ill patients who required mechanical ventilation for >7 days, and had an estimated ICU mortality of >50%. Team members reviewed transcripts independently and used grounded theory analysis.
The central theme of family members' experience with mechanical ventilation was â€˜living with death'. Initial reactions to the ventilator were of shock and surprise. Family members perceived no option except ventilation. While the ventilator kept the patient alive, it also symbolized the patient's proximity to death. In time, they became accustomed to the visual images 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 was traumatizing. 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 with mechanical ventilation may engender more respectful, meaningful communication about life support with families.