Next of kin’s Reactions to Results of Functional Neurodiagnostics of Disorders of Consciousness: a Question of Information Delivery or of Differing Epistemic Beliefs?

Our recent publication in Neuroethics re-constructed the perspectives of family caregivers of patients with disorders of consciousness (DOC) on functional neurodiagnostics (Schembs et al., Neuroethics, 2020). Two papers criticized some of our methodological decisions (Peterson, Neuroethics, 2020; Andersen et al., Neuroethics, 2020) 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 (prognosis). 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.