Disorders of Consciousness: An Embedded Ethnographic Approach to Uncovering the Specific Influence of Functional Neurodi
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Disorders of Consciousness: An Embedded Ethnographic Approach to Uncovering the Specific Influence of Functional Neurodiagnostics of Consciousness in Surrogate Decision Making Lise Marie Andersen Mette Terp Høybye
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Hanne Bess Boelsbjerg
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Received: 10 June 2020 / Accepted: 7 September 2020 # Springer Nature B.V. 2020
Abstract A recent qualitative study published in Neuroethics by Schembs and colleagues explores how functional neurodiagnostics of consciousness inform surrogate decision making in cases of disorders of consciousness. In this commentary, we argue that the chosen methodology significantly limits the scope of the potential conclusions and suggest an embedded ethnographic approach of co-presence as an alternative.
Keywords Unresponsive wakefulness syndrome (UWS) . Minimally conscious state (MCS) . Functional neuroimaging . Electroencephalography (EEG) . Disorders of consciousness (DOC) . Surrogate decision making . Ethnographic methods
L. M. Andersen (*) : H. B. Boelsbjerg : M. T. Høybye Interacting Minds Centre, Department of Clinical Medicine, Aarhus University, Jens Chr. Skous Vej 4, Building 1483, 8000 Aarhus C, Denmark e-mail: [email protected]
H. B. Boelsbjerg e-mail: [email protected] M. T. Høybye e-mail: [email protected] L. M. Andersen : H. B. Boelsbjerg : M. T. Høybye Interdisciplinary Research Unit, Elective Surgery Centre, Silkeborg Regional Hospital, Falkevej 1-3, 8600 Silkeborg, Denmark
The novel methods of functional neurodiagnostics for patients with disorders of consciousness (DOC) have yet to see wider implementation in routine care. However, in their paper “How Does Functional Neurodiagnostics Inform Surrogate Decision-Making for Patients with Disorders of Consciousness? A Qualitative Interview Study with Patients’ Next of Kin” [1] Leah Schembs and colleagues present exciting new research that to our knowledge brings the first insights from qualitative studies on how functional neurodiagnostics inform surrogate decision-making when such experimental assessment is closely implemented into routine care of patients with DOC. Given the great promise of results from functional neurodiagnostics in a clinical setting [2, 3], the results presented by Schembs and colleagues that functional neurodiagnostics, when implemented in routine assessment, play a limited role for the patients next of kin, are surprising and of relevance for further discussion.
The Results and Limitations of the Methods The qualitative study by Schembs and colleagues explores the experience of surrogate decision makers with the experimental use of functional neurodiagnostics, employing methods of high definition-EEG, aiming at detecting hidden awareness. The EEG examination included both active and passive tasks. Specifically, it included an auditory oddball paradigm and a motor imagery task. Schembs and colleagues interviewed seven next of kin in the homes of the participants between
L. M. Andersen et al.
one and nine months after the EEG examination. The participants were next of kin
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