Spanish Mothers' Plea: Urgent Need for 24/7 Pediatric Palliative Care

Spain's Palliative Care System Under Scrutiny: Mothers Demand 24/7 Support for Critically Ill Children In Spain, a growing concern surrounds the availability of palliative care for children. Mothers Mari and Maria José are leading the charge, highlighting the insufficient support systems forcing families to navigate complex and emotionally taxing situations. Their children, suffering from rare and debilitating conditions, require round-the-clock care, a need currently unmet in most Spanish regions. "We want to be covered and live with peace of mind," says Mari, mother of Bruno, a 14-year-old with a rare chromosomal disorder. She describes the constant struggle to provide care, emphasizing the need for a system that provides consistent support. Anna Varderí Casas, manager of the Villavecchia Foundation, adds expert context, explaining that palliative care isn't just about end-of-life care; it often entails long-term support. She notes that while some regions, like Catalonia, offer more comprehensive services, others, such as Andalusia, provide limited daytime hours. This disparity leaves many families struggling to manage the intense demands of caring for their children. The emotional toll on these families is palpable. Maria José, who lost her son a year and four months ago, describes her experience navigating emergency services in the absence of consistent palliative care. The mothers' stories are powerful, illustrating the urgent need for reform and the profound impact of inadequate healthcare systems on families. This situation underscores the need for a nationwide review of pediatric palliative care, ensuring that families receive the support they need, whenever they need it.