Abstract
BackgroundSevere brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope.MethodsTo examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with PDoC who were enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. Caregivers held surrogate decision-making status for a patient. Interviews were conducted at two time points for each caregiver. The first interview occurred before the disclosure of neuroimaging results. The second occurred after disclosure. Descriptive analysis was applied to the data of four interview topics: (1) expectations for neuroimaging; (2) reactions to evidence of preserved cognition; (3) reactions to null results; and (4) understanding of the results and study.ResultsTwelve caregivers participated in the study; two caregivers shared surrogate decision-making status for one patient with PDoC. Twenty-one interviews were completed; one caregiver declined to participate in the post-disclosure interview. Three patients with PDoC associated with the study displayed evidence of covert consciousness. Overall, caregivers understood the neuroimaging research and results. Caregivers who received results of covert consciousness were generally pleased. However, there was some variation in expectations and reactions to these data and null results.ConclusionThis study, for the first time, reveals caregiver expectations for and reactions to neuroimaging evidence of covert consciousness in patients with PDoC. Caregivers understood the neuroimaging research and results, casting doubt on speculative ethical concerns regarding therapeutic misconception and false hope. However, disclosure of neuroimaging result could be improved. Pre-disclosure consultations might assist professionals in shaping caregiver expectations. Standardization of disclosure might also improve comprehension of the results.
Highlights
Severe brain injury is a leading cause of death and disability
We interviewed caregivers who spoke English, were surrogate decision makers for the patient with prolonged disorders of consciousness (PDoC), and who had cared for the patient for at least six months
While it is possible that therapeutic misconception or false hope could arise from the disclosure of complex neuroimaging data following severe brain injury, our study did not detect these attitudes among our participants
Summary
Severe brain injury is a leading cause of death and disability. Diagnosis and prognostication are diffi‐ cult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, espe‐ cially in patients with prolonged disorders of consciousness (PDoC). It is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeu‐ tic misconception or false hope. Other studies demonstrate that some patients clinically diagnosed as being in a vegetative state can willfully modulate their brain activity to command, indicating that they are aware [6,7,8,9] These patients are regarded as “covertly conscious” or as having “cognitive motor dissociation”— their consciousness is manifest in their brain activity, not their overt behavior, and neuroimaging is the only way to detect it [10, 11]
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