Background. Functional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome (UWS) and the minimally conscious state (MCS). It remains unclear how it informs surrogate decisionmaking.

Objective. To explore how the next of kin of patients with disorders of consciousness (DOC) interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.

Methods and Sample. We conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional HD-EEG examination at a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.

Results. Regardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state (e.g., a “negative” HD-EEG-result) had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.

Conclusion. We hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions.

Keywords. Unresponsive wakefulness syndrome (UWS) . Persistent vegetative state (PVS) . Minimally conscious state (MCS) . Functional neuroimaging . Electroencephalography (EEG) . Family care givers




Schembs, L., Ruhfass, M., Racine, E., Jox, R., Bender, A., Rosenfelder, M., & Kuelmeyer, K. (2020). How does functional neurodiagnostics inform surrogate decision-making for patients with disorders of consciousness? A qualitative interview study with patients’ next of kin, Neuroethics. DOI: 10.1007/s12152-019-09425-4.