New Structures in Neurology: Palliative Care for Neurological Patients

Abstract

AbstractAlthough patients with incurable neurological diseases suffer from a variety of distressing symptoms and may die from their neurological condition and associated complications, palliative and hospice care for these patients to date remains rare. Initial estimates indicate that on average 10% of all patients suffering from a neurological disease need palliative and hospice care. However, within German neurology departments, only few physicians (on average 1.3/department) and nurses (on average 2.2./department) are specialized in palliative and hospice care and only about 3% of patients cared for in palliative or hospice care structures suffer from neurological diseases (in contrast to the approximately 80% of patients suffering from oncological diseases). This rather low number is due to the gradual increase in the awareness of palliative and hospice care needs for neurological patients and a currently predominant supply of oncological patients in palliative and hospice care structures that are primarily aimed at these patients. Correspondingly, the special aspects of neurological patients are currently not adequately addressed in the palliative training curricula of healthcare professionals. Rather, patients with advanced neurological conditions are medically cared for by general practitioners and by the existing inpatient and outpatient neurology structures, which may also offer sub-specialty services. Consequently, adequate care for severely affected neurological patients becomes difficult as soon as these patients are hardly able to visit these structures because home-based specialist treatment is currently rendered and financed only to a limited degree. Novel yet to date rare approaches, mostly of international origin, suggest that these patients may benefit from specialized home-based services, combining neurological and palliative care expertise. At present, data that characterizes the situation of neuro-palliative care in Germany remains scarce. In addition to the already known supply gaps (e. g., low rate of neurologists trained in palliative medicine as well as of nurses working in neurology trained in palliative care, lack of consideration of the specific (care) needs of neurological patients in general and specialized palliative and hospice care structures, few available home-based outpatient specialists) research is a prerequisite to identify current gaps in palliative care of neurological patients in more detail and how these might be overcome in the future.