The vegetative state: prevalence, misdiagnosis, and treatment limitations
van Erp, W.S., Lavrijsen, J.C., Vos, P.E., Bor, H., Laureys, S., & Koopmans, R.T.
1 January 2015Abstract
Introduction
Patients in a vegetative state/unresponsive waking syndrome (VS/UWS) open their eyes spontaneously, but only exhibit reflexive behavior. Although VS/UWS is one of the worst possible consequences of acquired brain injury, its prevalence is largely unknown. The aim of this study was to map the total population of hospitalized and institutionalized patients in VS/UWS in the Netherlands: prevalence, clinical features and treatment limitations.
Methods
National point prevalence study in patients in VS/UWS at least 1 month after acute brain injury in hospitals, rehabilitation centers, nursing homes, institutions for people with intellectual disabilities, and hospices; diagnosis verification by an investigator using the Coma Recovery Scale-revised (CRS-r); Collecting demographic data, clinical characteristics, and treatment limitations.
Results
We identified 33 patients in VS/UWS, of whom 24 diagnoses could be verified. Patients were on average 51 years of age with a mean duration of VS/UWS of 5 years. The main etiology was hypoxia contracted during cardiac arrest and resuscitation. More than 50% of patients had not received rehabilitation care. Most received life-sustaining treatment that went beyond internationally accepted prognostic boundaries regarding consciousness restoration. Seventeen (39%) of the 41 patients believed to have VS/UWS were found to be at least minimally conscious.
Conclusions
The results translate into a prevalence of 0.1 to 0.2 hospitalized and institutionalized US/UWS patients per 100,000 members of the general population. This small figure may be related to the legal option to withhold or withdraw life-prolonging treatment, including artificial feeding and hydration. On the other hand, this study shows that doctors continue with life-prolonging treatment for up to 25 years in certain cases. Patients have poor access to rehabilitation and are at significant risk of misdiagnosis.
Keywords
Long-Term Care, Vegetative State, Ethics, Acquired Brain Injury, Rehabilitation