“The Ventilator Means Death”: Patient and Family Beliefs, Cost Anxiety and Trust as Drivers of Mechanical Ventilation Refusal in Somali Intensive Care

Abstract: Mechanical ventilation is a life-sustaining therapy, yet in Somali intensive care settings it may be perceived by families as a marker of inevitable death. This commentary examines how refusal of intubation, pressure to discontinue ventilatory support, and self-discharge may emerge from interacting system constraints, belief-based fatalism, out-of-pocket cost anxiety, limited ICU knowledge, and trust and communication gaps related to sedation, prognosis, and goals of care. Using a patient-preference and adherence lens, we argue that some refusal events may represent modifiable non-adherence to a medically indicated plan rather than simple rejection of treatment, while emphasizing that this framing should not blame patients or families facing distress, uncertainty, and financial pressure. We propose pragmatic, culturally responsive steps that are feasible in resource-constrained ICUs, including standardized family orientation to ventilation and sedation, structured daily updates, early cost transparency linked to social support pathways, and documented non-coercive escalation for high-risk refusal. These actions may strengthen informed preference formation, reduce misunderstanding, protect patient rights, and improve alignment between family decisions and appropriate life-sustaining care. Future qualitative, audit, and implementation studies are needed to evaluate these proposed interventions in local critical care settings. Keywords: mechanical ventilation, refusal, intensive care, trust, communication, financial toxicity, Somalia