Abstract
Introduction: Medical advances in the recent years have led to an increased life span for children with progressive, neurodegenerative, and life-limiting illnesses (NLTIs). An appropriate care for children with NLTIs and their families can compromise disease-directed treatments, life-prolonging therapies, and a care focused on comfort and quality of life. Treatment-specific needs will vary depending on the underlying disease entity and the goal of care. At present, children with NLTIs in Germany are taken care of by different care providers with diverse focuses and different intensity, for example, neuropediatric and social pediatric clinics, private home nursing, special need schools, and others. In 2007, specialist outpatient palliative care (SAPV) was inacted in Germany. According to the law, SAPV contains specialist palliative medical and nursing services including the coordination of the health care delivery.
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