Taking a Chance to Recover: Families Look Back on the Decision to Pursue Tracheostomy After Severe Acute Brain Injury

Background: Tracheostomy represents one important and value-laden treatment decision after severe acute brain injury (SABI). Whether to pursue this life-sustaining treatment typically hinges on intense conversations between family and clinicians. The aim of this study was, among a cohort of patient who had undergone tracheostomy after SABI, to explore the long-term reflections of patients and their families as they look back on this decision. Methods: For this qualitative study, we reviewed the electronic medical records of patients with SABI who underwent tracheostomy. We included all patients who were admitted to our 30-bed neuro-intensive care unit with SABI and underwent tracheostomy between November 2017 and October 2019. Using purposive sampling, we invited survivors and family members to participate in telephone interviews greater than 3 months after SABI until thematic saturation was reached. Interviews were audiotaped, transcribed, and analyzed by using thematic analysis. Results: Overall, 38 patients with SABI in the neuro-intensive care unit underwent tracheostomy. The mean age of patients was 49 (range 18–81), with 19 of 38 patients diagnosed with traumatic brain injury and 19 of 38 with stroke. We interviewed 20 family members of 18 of 38 patients at a mean of 16 (SD 9) months after hospitalization. The mean patient age among those with an interview was 50 (range 18–76); the mean modified Rankin Scale score (mRS) was 4.7 (SD 0.8) at hospital discharge. At the time of the interview, ten patients lived at home and two in a skilled nursing facility and had a mean mRS of 2.6 (SD 0.9), and six had died. As families reflected on the decision to proceed with a tracheostomy, two themes emerged. First, families did not remember tracheostomy as a choice because the uncertain chance of recovery rendered the certain alternative of death unacceptable or because they valued survival above all and therefore could not perceive an alternative to life-sustaining treatment. Second, families identified a fundamental need to receive supportive, consistent communication centering around compassion, clarity, and hope. When this need was met, families were able to reflect on the tracheostomy decision with peace, regardless of their loved one’s eventual outcome. Conclusions: After SABI, prognostic uncertainty almost transcends the concept of choice. Families who proceeded with a tracheostomy saw it as the only option at the time. High-quality communication may mitigate the stress surrounding this high-stakes decision.