Unexpected emergence from the vegetative state: delayed discovery rather than late recovery of consciousness

Willemijn S Van Erp,Raymond T C M Koopmans,Steven Laureys,Pieter E Vos,Anoek M L Aben,Jan C M Lavrijsen

doi:10.1007/s00415-019-09542-3

Abstract

BackgroundThe vegetative state, also known as the unresponsive wakefulness syndrome, is one of the worst possible outcomes of acquired brain injury and confronts rehabilitation specialists with various challenges. Emergence to (minimal) consciousness is classically considered unlikely beyond 3–6 months after non-traumatic or 12 months after traumatic etiologies. A growing body of evidence suggests that these timeframes are too narrow, but evidence regarding chances of recovery is still limited.ObjectiveTo identify the moment of recovery of consciousness in documented cases of late emergence from a vegetative state.MethodsFour cases of apparent late recovery of consciousness, identified within a prospective cohort study, were studied in-depth by analyzing medical, paramedical and nursing files and interviewing the patients’ families about their account of the process of recovery.ResultsAll patients were found to have shown signs of consciousness well within the expected time frame (5 weeks–2 months post-ictus). These behaviors, however, went unnoticed or were misinterpreted, leading to a diagnostic delay of several months to over 5 years. Absence of appropriate diagnostics, the use of erroneous terminology, sedative medication but also patient-related factors such as hydrocephalus, language barriers and performance fluctuations are hypothesized to have contributed to the delay.ConclusionsDelayed recognition of signs of consciousness in patients in a vegetative state may not only lead to suboptimal clinical care, but also to distorted prognostic figures. Discriminating late recovery from the delayed discovery of consciousness, therefore, is vital to both clinical practice and science.

Highlights

The vegetative state, known as the unresponsive wakefulness syndrome (VS/UWS) is one of the worst possible outcomes of acquired brain injury [1, 2]
On-site assessment of level of consciousness (LoC) by a trained clinical researcher (WvE) consisted, at baseline and at each follow-up, of a single Coma Recovery Scalerevised (CRS-R) [11] plus observation of possibly conscious behavior reported by proxies and staff
We included patients with a CRS-R based VS/UWS diagnosis, in whom the first signs of consciousness were detected during formal follow-up at or after 6 or 12 months

Summary

Introduction

The vegetative state, known as the unresponsive wakefulness syndrome (VS/UWS) is one of the worst possible outcomes of acquired brain injury [1, 2]. Emergence from VS/UWS is classically considered unlikely beyond 3–6 months after non-traumatic or 12 months after traumatic etiologies [3]. These timeframes, are likely inaccurate [4, 5]. Differentiating VS/UWS from MCS remains challenging, as reflected by a high rate of misdiagnosis [10]. In this context of diagnostic and prognostic uncertainty, clinicians and families face vital decisions on treatment goals and limitations. We present four VS/UWS patients in whom signs of consciousness were identified beyond the aforementioned timeframes and propose clinical and scientific recommendations that arise from their stories

Methods

Discussion

Compliance with ethical standards