Families’ Experiences Making Decisions across Time and Settings in Chronic Critical Illness

Abstract Rationale Chronic critical illness (CCI) results in high patient morbidity and mortality rates and imposes substantial burdens on families as surrogate decision-makers. Prior research has predominantly focused on families’ decisional needs before tracheostomy in the intensive care unit despite CCI unfolding over a period of weeks to months across multiple care transitions and settings. Objective To characterize families’ decision-making experiences and reflections along the continuum of CCI across time and care transitions. Methods We conducted semistructured interviews with family decision-makers of patients who received a tracheostomy for persistent respiratory failure after an acute illness, first within 2 weeks to 6 months after tracheostomy and again weeks to months later. We analyzed data using inductive and deductive analysis methods. Results We interviewed 23 family decision-makers of 19 patients and identified five themes. First, tracheostomy is most often presented as a “needed” procedure in the acute setting, leaving families with a sense of little choice and limited awareness of the broader, long-term care trajectory. Second, several families felt pressured to make a certain decision or judged when their decision opposed the team’s recommendation, specifically if they perceived the recommendation as misaligned with the patient’s goals. Third, after tracheostomy, families accepted ongoing interventions to reach a postacute facility, which represented hope for recovery. Fourth, after transitioning to a postacute facility, families faced uncertainty about recovery expectations and made ongoing decisions focused on overcoming setbacks amid the “rollercoaster” of CCI. Fifth, the passage of time with CCI made it increasingly difficult for families to remain physically and psychologically present, leading to a growing sense of passivity in decision-making and a loss of control over the patient’s journey. Conclusions We found critical problems in communication and support throughout the continuum of CCI. Although the framing of tracheostomy as a need with limited deliberation about long-term implications remains problematic, our findings emphasize that tracheostomy is only one of many decisions families face throughout CCI. Our data suggest shifting the focus from intensive care unit–based solely “tracheostomy decision-making” to longitudinal decisional support that extends across time and settings, enabling ongoing reassessment and decision-making based on the patient’s evolving trajectory.