The unresponsive wakefulness syndrome (UWS), formerly known as the vegetative state, is one of the most dramatic outcomes of acquired brain injury. Patients with UWS open their eyes spontaneously but demonstrate only reflexive behavior; there are no signs of consciousness. Research shows that, for years now, the Netherlands has the world's lowest documented prevalence of UWS. Unfortunately, this small group of vulnerable patients does not receive the care it needs. Access to specialized rehabilitation is limited, misdiagnosis rates are high and a substantial number of UWS patients receive life-prolonging treatment beyond chances of recovery, despite a framework allowing for discontinuation of such treatment once recovery of consciousness has become unlikely. By comparing data from 2012 with that of 2003, this paper illustrates the current situation and outlook for UWS patients in the Netherlands and makes recommendations for the optimization of treatment and care, as well as for future research.

Contains fulltext : 165875.pdf (Publisher’s version ) (Open Access)