“I’m Happy, Considering What I’ve Been Through”: An Interpretative Phenomenological Analysis of Quality of Life after Acute Brain Injury

BACKGROUND: In neurocritical care units (NCCU), decisions to withhold life-sustaining therapies are sometimes influenced by anticipated disability and quality of life (QoL) impairment, particularly when further interventions are deemed futile. However, health-related QoL (HRQoL) is inherently subjective and does not always correlate with disability levels. This qualitative, noninterventional study aimed to assess the relevance of HRQoL in ethical decision-making using interpretative phenomenological analysis (IPA) to investigate subjective HRQoL. METHODS: Patients were interviewed by a single intensivist to assess their subjective QoL 2 years after their stay in an NCCU following an acute brain injury (ABI). The intensivist directed the interview toward HRQoL using a guide comprising limited and mostly open-ended questions. Audio recordings of the interviews were transcribed verbatim into Word narratives, analyzed in depth by two intensivists using IPA methodology and NVivo 14 software to enable exploration of patients' lived experiences and personal QoL assessments. RESULTS: A total of 14 patients were invited to the follow-up appointment, 7 for whom life-sustaining treatment had been withheld in the NCCU and 7 matched patients for whom this decision had not been made. Among the nine patients finally included, life-sustaining treatment had been withheld in four cases. Patients varied greatly in how they perceived and valued their QoL. While most valued relationships and independence, they expressed these values in different ways. Frustration with disability and support from relatives emerged as key motivators for rehabilitation. Despite their challenges, patients expressed gratitude for survival and pride in their progress and daily achievements. Overall, their experiences highlighted the deeply personal and subjective nature of disability and QoL assessment. CONCLUSIONS: HRQoL after ABI is highly subjective and should be considered with great caution in decisions to withhold life-sustaining treatment in NCCU. Further studies are warranted to improve outcome assessment after ABI and aid ethical decision-making.