The ethics of uncertainty : entangled ethical and epistemic risks in disorders of consciousness

Disorders of consciousness (DoCs) raise difficult and complex questions about the value of life for persons with impaired consciousness, the rights of persons unable to make medical decisions, and our social, medical, and ethical obligations to patients whose personhood has frequently been challenged and neglected. Recent neuroscientific discoveries have led to enhanced understanding of the heterogeneity of these disorders and patients, and focused renewed attention on the disturbingly high rate of misdiagnosis. This book examines the entanglement of epistemic and ethical uncertainty in DoCs and other medical contexts, and how they interact to create both epistemic and ethical risks. Philosopher and bioethicist L. Syd M Johnson pulls together multiple threads—the ontological mysteries of consciousness, medical uncertainty about unconsciousness, ableist bias, withdrawal of treatment in neurointensive care, and the rarely questioned view that consciousness is essential to personhood and moral status. Johnson challenges longstanding bioethical dogmas about DoC patients, and argues for an ethics of uncertainty for contexts where there is a need for decisive action in the presence of unavoidable uncertainty. The ethics of uncertainty refocuses ethical inquiry concerning persons with DoCs, placing less emphasis on their contested personhood, and more on inductive risk and uncertainty, on respect for autonomy, and especially on epistemic justice, and the duties of privileged epistemic agents. It is an approach with applications beyond brain injury, encouraging an expansive and humane approach that enables surrogate decision makers facing fraught, complex, risky choices to fulfill their obligations as moral and epistemic agents. Disorders of Consciousness (DoCs) raise difficult and complex questions about the value of life for persons with impaired consciousness, the rights of persons unable to make medical decisions, and our social, medical, and ethical obligations to patients whose personhood has frequently been challenged and neglected. Recent neuroscientific discoveries have led to enhanced understanding of the heterogeneity of these disorders, and focused renewed attention on the medical and ethical problem of misdiagnosis. This book examines the entanglement of epistemic and ethical uncertainty in DoCs and other medical contexts, and how they interact to create both epistemic and ethical risks. Philosopher and bioethicist L. Syd M Johnson pulls together multiple threads in this work: the ontological mysteries of consciousness, medical uncertainty about unconsciousness, ableist bias, withdrawal of treatment in neurointensive care, and the rarely questioned view that consciousness is essential to personhood and moral status. Johnson challenges longstanding bioethical dogmas about DoC patients, and argues for an ethics of uncertainty for contexts where there is a need for decisive action in the presence of unavoidable uncertainty. The ethics of uncertainty refocuses ethical inquiry concerning persons with DoCs, placing less emphasis on their contested personhood, and more on inductive risk and uncertainty, on respect for autonomy, and especially on epistemic justice. With applications to various decisional contexts where uncertainty and ethical risk interact, this ethical approach enables surrogate decision makers facing fraught and risky choices to fulfill their obligations as moral and epistemic agents. "Consciousness isn't a thing you can poke a stick at. It's not a natural kind, like a bit of quartz, or quarks, or water. Like "life," which can be attributed to many entities, but is not a thing with reality apart from living entities, consciousness can be attributed to conscious entities without being some further thing or fact, some mysterious, mentalizing "force" that can exist without conscious entities. It is manifested in conscious states and creatures, but isn't a thing in and of itself. One of the enduring puzzles about consciousness and conscious states is how they, as apparently mental, nonphysical states, can manifest in a physical entity like a brain. We can point to a physical bit of brain, to a neuron, or a structure like the thalamus, but we can't locate the consciousness within that bit of brain or its neural cells"-- Provided by publisher