Families with loved ones on mechanical ventilation in the ICU found a way to face “living with dying”
How do family members of critically ill patients on mechanical ventilation in the intensive care unit (ICU) experience this life-support technology?
A tertiary care, medical-surgical ICU in Hamilton, Ontario, Canada.
26 people (10 spouses, 14 children, 1 father, and 1 brother-in-law) who were 45–68 years of age (mean age 52 y, 58% men) and had a family member receiving mechanical ventilation in the ICU. Patients (mean age 71 y, 65% men) were admitted to the ICU in the previous 7–13 days (mean 7.5 d) and had an estimated 50% probability of death according to the ICU attending physician; 81% had a medical diagnosis. No patient had a do-not-resuscitate status.
Family members participated in in-depth, semistructured interviews (45–60 min) and were asked about their feelings and experiences dealing with loved ones on mechanical ventilation in the ICU. Interviews were audiotaped, transcribed, and analysed using grounded theory methods.
Living with dying. The ventilator represented efforts to keep patients alive but also reminded family members that they were close to death. Family members were initially shocked and surprised to see their loved ones on a ventilator. Patients were visibly transformed by being mechanically ventilated, and family members found the change disturbing. They were unaware of alternative options to endotracheal intubation, and their understanding of ventilation was limited. They did not associate the ventilator with life support but viewed it as a “breathing assistant.” Living with mechanical ventilation. The meaning of the ventilator transformed over time from a sign of death to a way of life. Families adapted to the ICU routine and to seeing their loved ones on ventilation. They became more proactive and learned how to ask questions. They had vivid memories of first learning about their loved ones being on mechanical ventilation, and they felt that better communication would have helped to prepare them for the experience. They also began to accept the situation. They tried to see the ventilator as a good thing, and they hoped for recovery. They saw the ventilator as offering the patient rest, which they felt was helpful for healing. However, some family members were aware that there could be harmful effects and worried about bacteria in the tubes or about the patient’s body becoming dependent on the machine. The suffering related to the ventilator and the ICU experience was hard for family members. Their health, home life, and work life were affected. Selected family members reticently took on the burden of being spokesperson at the request of the ICU to foster better communication. These designated spokespeople became armchair healthcare workers. They disseminated information to other family members and took responsibility for making care decisions. They often found themselves caught between doctors and family members, which created further suffering for themselves.
Family members’ experiences of having a loved one on mechanical ventilation in the intensive care unit evolved over time. Families lived in a precarious state because they faced uncertainty about death while trying to maintain hope. They adapted to the environment of the intensive care unit over time.
Sinuff T, Giacomini M, Shaw R, et al. “Living with dying”: the evolution of family members’ experience of mechanical ventilation. Crit Care Med 2009;37:154–8.
Having a loved one admitted to the ICU for the life-saving intervention of mechanical ventilation is an intensely disturbing event that influences all aspects of family members’ lives. Mechanical ventilation and the ICU experience are inextricably linked, with mechanical ventilation becoming a symbol of life and death for family members.
Families evolve in their understanding of the meaning of the ventilator during their habituation to the ICU environment and its routines. The challenge to understanding the flux between living and dying that mechanical ventilation represents is influenced by family members’ psychological stress, capacity to cope, and access to information. While their initial reaction is one of shock and surprise, ongoing exposure means that mechanical ventilation becomes more “normal.”
The study by Sinuff et al offers ICU healthcare teams direction for providing support to families during this transition. Proactive programmes of interventions designed to reduce the impact on family members could include early communication to prepare family members for the initial encounter; family conferences; and printed material containing frequently asked questions, unit routines, change of shift, and rounding routines. A specific focus for support should be the family “spokesperson.” This role was highlighted as particularly stressful, with the spokesperson negotiating communication between family and medical staff. Recognition of this difficult role and the possible benefits of support by ICU healthcare teams may enhance the experience of mechanical ventilation of family members in the ICU.