title: Clinical pragmatism and the care of brain damaged patients: toward a palliative neuroethics for disorders of consciousness.
abstract: 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 inquiry, 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 paper, I attempt to explain systematically some of these challenges. I 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 adopt that field's ethos and methods when caring for and conducting research on individuals with severe brain damage and disorders of consciousness. To make this argument I 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.
authors.affiliation: Division of Medical Ethics, Weill Medical College of Cornell University, 435 East 70th Street, Suite 4-J, NY 10021, USA. jjfins@mail.med.cornell.edu
authors.forename: Joseph J
authors.initials: JJ
authors.lastname: Fins
mesh_terms: D001925:Brain Damage, Chronic / Q000523:psychology*; D003244:Consciousness Disorders / Q000209:etiology / Q000628:therapy*; D026690:Ethics, Clinical; D006801:Humans; D009462:Neurology / Q000941:ethics*; D033281:Nontherapeutic Human Experimentation / Q000941:ethics*; D010166:Palliative Care / Q000941:ethics*; D010684:Philosophy