“You begin to give more value in life, in minutes, in seconds”: spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil

Purpose Facing the end of life may trigger significant distress in family caregivers of patients with advanced cancer. However, few studies have addressed the spiritual and existential concerns of these family caregivers in their end-of-life care journey. This study aimed to understand the spiritual and existential experience of family caregivers of patients with advanced cancer facing the end of life in Brazil. Methods A purposive sample of 16 family caregivers of hospitalized terminally ill cancer patients in Brazil participated in in-depth interviews. Data collection and analysis were based on interpretative phenomenological analysis. Results Three superordinate themes in their spiritual and existential experience were identified: (i) connectedness through caregiving, personal relationships, and spiritual beliefs; (ii) shifting hope: from death as a possibility to preparation for impending death; (iii) reframing suffering and meaning. For these caregivers, the relationship with the patient and with others, their spiritual beliefs, and hope were significant sources of meaning. Hope was sustained by death avoidance, oscillating with death acceptance and hope that it would occur with comfort. Family caregivers also experienced existential and spiritual suffering in the form of guilt, suppressed emotions, and loneliness. Conclusion Health care providers should address and support caregivers’ spiritual needs and their relationships with the patient and others during end-of-life care and facilitate reflection regarding existential concerns, meaning, and preparation for impending death.