“We are running on the fumes of goodwill” Professionals’ experiences of delivering 24/7 end-of-life care to children and their families: a qualitative study

Stepping up to support families with 24/7 end-of-life care for their child, has resulted in an unsustainable physical and emotional toll on professionals. The impact of delivering care in an inequitable system is causing significant moral distress, and there is a growing realisation that their goodwill is masking current systemic shortcomings. Integrated Care Boards must work jointly to find economies of scale to establish equitable and sustainable models of delivery that meet national standards and to ensure all children have access to high quality 24/7 end-of-life care.