From Awareness to Prognosis: Ethical Implications of Uncovering Hidden Awareness in Behaviorally Nonresponsive Patients

Long-term patient outcomes after severe brain injury are highly variable, and reliable prognostic indicators are urgently needed to guide treatment decisions. Functional neuroimaging is a highly sensitive method of uncovering covert cognition and awareness in patients with prolonged disorders of consciousness, and there has been increased interest in using it as a research tool in acutely brain injured patients. When covert awareness is detected in a research context, this may impact surrogate decisionmaking-including decisions about life-sustaining treatment-even though the prognostic value of covert consciousness is currently unknown. This paper provides guidance to clinicians and families in incorporating individual research results of unknown prognostic value into surrogate decisionmaking, focusing on three potential issues: (1) Surrogate decisionmakers may misinterpret results; (2) Results may create false hope about the prospects of recovery; (3) There may be disagreement about the meaningfulness or relevance of results, and appropriateness of continued care.