BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe 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.ResultsRegardless 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 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.ConclusionWe 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. (shrink)

Our recent publication in Neuroethics re-constructed the perspectives of family caregivers of patients with disorders of consciousness on functional neurodiagnostics. Two papers criticized some of our methodological decisions and commented on some conclusions. In this commentary, we would like to further explain our methodological decisions. Despite the limitations of our findings, which we readily acknowledged, we continue to think they entail valid hypotheses that need further investigation. We conclude that some caregivers with high hopes for the recovery of their loved (...) ones with DOC will most likely not consider results of functional neuroimaging as guiding information for treatment decisions, despite efforts taken to deliver information to them. Caregivers of that type might argue that such test-results are not a reliable source of information for the judgement of whether their loved one is likely going to recover or not. We introduce the concept of epistemic beliefs to formulate this hypothesis and suggest that future qualitative studies in this area should be aware of such beliefs when investigating the effects of functional neurodiagnostics on knowledge communication and shared decision making for patients with DOC. (shrink)