Preference to Sustain Life in Locked-in Syndrome

Patients with the locked-in syndrome are awake and conscious but have almost complete immobility and loss of verbal communication. Etiologies can be acute (e.g., brainstem stroke — the most frequent cause [60% of cases]) or chronic (e.g., amyotrophic lateral sclerosis [ALS]).

These authors report a cross-sectional, observational study of well-being and end-of-life preferences in patients with ALS in a locked-in state (LIS). They used standardized questionnaires and interviewed 19 patients to evaluate sense of well-being, quality of life (QoL), depression, coping mechanisms, preferences regarding life-sustaining treatments such as ventilation or percutaneous endoscopic gastrostomy, and attitude toward hastened death. Most patients indicated p…