How Does Functional Neurodiagnostics Inform Surrogate Decision-Making for Patients with Disorders of Consciousness? A Qu
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ORIGINAL PAPER
How Does Functional Neurodiagnostics Inform Surrogate Decision-Making for Patients with Disorders of Consciousness? A Qualitative Interview Study with Patients’ Next of Kin Leah Schembs & Maria Ruhfass & Eric Racine & Ralf J. Jox & Andreas Bender & Martin Rosenfelder & Katja Kuehlmeyer Received: 12 April 2019 / Accepted: 9 December 2019 # Springer Nature B.V. 2020
Abstract 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
L. Schembs : M. Ruhfass : K. Kuehlmeyer (*) Institute of Ethics, History and Theory of Medicine, LMU Munich, Lessingstr. 2, 80336 Munich, Germany e-mail: [email protected] E. Racine Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), 110 Pine Ave W, Montreal, Québec H2W 1R7, Canada A. Bender Department of Neurology, University Hospital, LMU Munich, Marchioninistr. 15, 81377 Munich, Germany A. Bender : M. Rosenfelder Therapiezentrum Burgau, Kapuzinerstraße 34, 89331 Burgau, Germany R. J. Jox Clinical Ethics Unit and Institute of Humanities in Medicine, Lausanne University Hospital and University of Lausanne, Rue du Bugnon 21, CH-1011 Lausanne, Switzerland R. J. Jox Service of Palliative and Supportive Care, Department of Medicine, Lausanne University Hospital, Avenue Pierre-Decker 5, CH-1011 Lausanne, Switzerland
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
L. Schembs et al.
moderate the impact of functional neur
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