Unresponsive wakefulness syndrome: Outcomes from a vicious circle

T he unresponsive wakefulness syndrome (UWS), also known as the vegetative state (VS), is one of the most dramatic outcomes of acquired brain injury. Despite spon-taneous eye opening and independent vital functions, VS/UWS patients cannot functionally communicate their thoughts or feelings and appear completely unaware of their surroundings and themselves. 1,2 VS/UWS has confronted families, clinicians, society, and science with a variety of clinical and ethical quests and dilemmas for >50 years. 3,4 Uncertainty about the natural course of VS/UWS plays a major part in many of these challenges. With a prevalence of 0.2 to 6.1 patients per 100,000 inhabitants, 5 it is classi fi ed as a rare to ultrarare medical condition. 6 Available fi gures on recovery and survival arise mostly from well-organized clinical environments in which VS/UWS patients receive specialized postacute care. 7 – 9 These, however, do not represent standard practice. 10,11 Fins coined the term “ disordered care ” to describe the dire straits patients with disorders of consciousness and their families in the USA were in in 2013. 10 The evidence with regard to the expected outcome in patients in VS/UWS was characterized as “ limited ” in a 2018 review by the American Academy of Neurology (AAN). 12,13 Data about survival and end-of-life scenarios in VS/UWS are of particular importance to the ongoing international debate on decision-making in prolonged disorders of consciousness (PDOC). The view on discontinuation of arti fi cial nutrition and hydration (ANH) in these patients varies