Neuroethics and Disorders of Consciousness: A Pragmatic Approach to Neuropalliative Care

Unraveling the mysteries of consciousness, lost and regained, and perhaps even intervening so as to prompt recovery are advances for which neither the clinical nor the lay community are prepared. These advances will shake existing expectations about severe brain damage and will find an unprepared clinical context, perhaps even one inhospitable to what should clearly be viewed as important advances. This could be the outcome of this line of enquiry, if this exceptionally imaginative research can continue at all. This work faces a restrictive research environment that has the potential to imperil it. Added to the complexity of the scientific challenges that must be overcome is the societal context in which these investigations must occur. Research on human consciousness goes to the heart of our humanity and asks us to grapple with fundamental questions about the self. Added to this is the regulatory complexity of research on subjects who may be unable to provide their own consent because of impaired decision-making capacity, itself a function of altered or impaired consciousness. These factors can lead to a restrictive view of research that can favor risk aversion over discovery. In this chapter, I will attempt to explain systematically some of these challenges. I will suggest that some of the resistance might be tempered if we view the needs of patients with severe brain injury through the prism of palliative care and adopted that field's ethos and methods when caring for and conducting research with individuals with severe brain damage and disorders of consciousness. More fundamentally we need to view the needs of this marginalized population as a human rights issue. To make this argument I will draw upon the American pragmatic tradition and utilize clinical pragmatism, a method of moral problem solving that my colleagues and I have developed to address ethical challenges in clinical care and research.