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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 KuehlmeyerEmail author
Original Paper



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 decision-making.


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.


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.


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.


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



This article is part of LS’s cumulative dissertation (Dr. med.) at the Medical Faculty of LMU Munich. The assistance provided by Marion Arndt in approaching the participants and ensuring their informed consent, by Silke Ohlmeier for transcribing interviews and sharing her insights during early stages of the analysis with us, by Lukas Martinez who translated some of the interview quotes from German into English and by Lars Schrodberger who finalized the layout of the figure is very much appreciated. We are grateful to participants of different research meetings where we were able to discuss our study, foremost in Germany at the rehabilitation center where the examinations of the patients were conducted, the Qualitative Workshop [Qualitative Werkstatt] at LMU Munich, the Institute for Ethics, History and Theory of Medicine at LMU Munich, the Palliative Medicine Research Network under the lead of Prof. Dr. Gian Domenico Borasio in Munich and in Canada a meeting with the Montréal Neuroethics Network and a Journal Club at the Neuroethics Research Unit at the IRCM and a poster presentation at the 21st International Congress on Palliative Care. Last but not least, we would like to express our great appreciation to the participants of this study who shared their personal experiences with us. We also express our gratitude to the Friedrich-Baur-Stiftung who funded our study (Grant Number: 12/14, funding period 8/2014 to 07/2016) and the Max Weber Program who funded LS’s research stay at the IRCM, Montréal, Canada and her visit to the 21st International Congress on Palliative Care. Furthermore, ER receives a career award from the Fonds de recherche du Québec – Santé (FRQ-S).

Compliance with Ethical Standards

Research involving Human Participants: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Disclosure of potential conflicts of interest

All authors declare no conflict of interest.


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Copyright information

© Springer Nature B.V. 2020

Authors and Affiliations

  1. 1.Institute of Ethics, History and Theory of MedicineLMU MunichMunichGermany
  2. 2.Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal (IRCM)MontrealCanada
  3. 3.Department of NeurologyUniversity Hospital, LMU MunichMunichGermany
  4. 4.Therapiezentrum BurgauBurgauGermany
  5. 5.Clinical Ethics Unit and Institute of Humanities in MedicineLausanne University Hospital and University of LausanneLausanneSwitzerland
  6. 6.Service of Palliative and Supportive Care, Department of MedicineLausanne University HospitalLausanneSwitzerland

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