When information on a coma patient’s expected outcome is uncertain, a moral dilemma arises in clinical practice: if life-sustaining treatment is continued, the patient may survive with unacceptably poor neurological prospects, but if withdrawn a patient who could have recovered may die. Continuous electroencephalogram-monitoring is expected to substantially improve neuroprognostication for patients in coma after cardiac arrest. This raises expectations that decisions whether or not to withdraw will become easier. This paper investigates that expectation, exploring cEEG’s impacts when it becomes (...) part of a socio-technical network in an Intensive Care Unit. Based on observations in two ICUs in the Netherlands and one in the USA that had cEEG implemented for research, we interviewed 25 family members, healthcare professionals, and surviving patients. The analysis focuses on the way patient outcomes are constructed, the kind of decision support these outcomes provide, and how cEEG affects communication between professionals and relatives. We argue that cEEG can take away or decrease the intensity of the dilemma in some cases, while increasing uncertainty for others. It also raises new concerns. Since its actual impacts furthermore hinge on how cEEG is designed and implemented, we end with recommendations for ensuring responsible development and implementation. (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)

Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients’ surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims to (...) explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one’s condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies. (shrink)

Some patients, following brain injury, do not outwardly respond to spoken commands, yet show patterns of brain activity that indicate responsiveness. This is “cognitive-motor dissociation” (CMD). Recent research has used machine learning to diagnose CMD from electroencephalogram (EEG) recordings. These techniques have high false discovery rates, raising a serious problem of inductive risk. It is no solution to communicate the false discovery rates directly to the patient’s family, because this information may confuse, alarm and mislead. Instead, we need a procedure (...) for generating case-specific probabilistic assessments that can be communicated clearly. This article constructs a possible procedure with three key elements: (1) a shift from categorical “responding or not” assessments to degrees of evidence; (2) the use of patient-centred priors to convert degrees of evidence to probabilistic assessments; and (3) the use of standardized probability yardsticks to convey those assessments as clearly as possible. (shrink)

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.