Abstract
Patients in a minimally conscious state (MCS) are expected to have better rehabilitation outcomes than patients with unresponsive wakefulness syndrome (UWS). We analyze, how the next of kin of patients with disorders of consciousness (DOC) interpret the results of diagnostic tests including HD-EEG to detect residual cognitive function and how these interpretations influence their surrogate treatment decisions. Qualitative interview study with next of kin after a patient with DOC has received a diagnostic HD-EEG examination at a rehabilitation center in Germany; maximum variation sampling; analyzing the verbatim transcripts with qualitative content analysis. So far, we conducted the first three interviews. Despite of different results of the diagnostic tests, all participants perceived the patients were interacting with them. The participants differed in the extent to which they valued the tests: Where the first participant had high hopes for the test to prove to others that here daughter was showing signs of consciousness, the third participant couldn’t recall which tests her husband underwent. For the second participant the test results were important but she struggled aligning it with her intuitive beliefs. The first two participants questioned the validity of neuroscientific examination methods. On the other hand, they hoped that professional caregivers and payers could be convinced by positive test results (MCS) to invest more in the rehabilitation of the patient. A negative test result (UWS) in the first case did not lead to a reconsideration of the therapeutic goal and treatment strategy. When the test result does not match the next of kin’s impression of the patient’s condition uncertainty is still used as an argument to overrule the divergent test results. The preliminary results show how next of kin use different strategies in dealing with diagnostic test results of DOC patients.
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