Tough Decisions in Unclear Situations. Dealing with Epistemic and Ethical Uncertainty in Disorders of Consciousness

Abstract

Disorders of consciousness (DoC) are characterized by impaired or complete loss of self-awareness and awareness of the environment. It is not easy to assess the level of consciousness of people with DoCs; there may be cases of covert awareness, that is, people who manifest complete behavioural unresponsiveness but preserve some degree of consciousness. This makes the search for neuronal markers of consciousness in subjects with DoC quite urgent, and the improvement and dissemination of innovative neuroimaging technologies a moral imperative. Neuroethics, considered here as a special branch of clinical ethics, should deal with the ethical implications of these neurotechnologies and the intrinsic uncertainty of diagnosis and prognosis about disorders of consciousness, with a focus on how these issues affect clinical decision-making. First, I will present some epistemic and methodological issues that characterise the disorders of consciousness: diagnostic error, prognostic uncertainty, communication with family and caregivers, and the performative value of clinical language. The epistemic uncertainty emerging from these problems is deeply intertwined with ethical uncertainty, especially when dealing with clinical decisions that may lead to the death of persons whose states of consciousness (and wishes) are not entirely clear. I will suggest the need for epistemic and ethical prudence, through the formulation of a balance between the two principles of inductive risk as proposed by L. Syd M Johnson. Consequently, recognition of intrinsic uncertainty in the field of disorders of consciousness could improve clinical and ethical attitudes, avoiding hasty end-of-life decisions and cases of misinterpretation and manipulation in physician-family communication.