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 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.

Table of Contents:
Part I: Laying the Groundwork Chapter 1: Consciousness Chapter 2: Unconsciousness Chapter 3: Uncertainty Part II: The Ethics of Uncertainty Chapter 4: Inference and Inductive Risk Chapter 5: Upstream/Downstream Chapter 6: The Ethics of Uncertainty Part III: Some Applications Chapter 7: Moral Status and the Consciousness Criterion Chapter 8: Disorders of Consciousness and the Disability Critique Chapter 9: Responding to Uncertainty: Beyond Disorders of Consciousness

About the Author :
L. Syd M Johnson, Ph.D, is a philosopher, bioethicist, and neuroethicist. She is Associate Professor at SUNY Upstate Medical University, in the Center for Bioethics and Humanities. Dr. Johnson is an ethics consultant at Upstate University Hospital, and a member of the NIH BRAIN Initiative Neuroethics Working Group. Her research focuses on ethical issues related to brain injuries, including disorders of consciousness, brain death, and sport-related neurotrauma; animal ethics; and research ethics.

Review :
The Ethics of Uncertainty, by L. Syd Johnson, is a thought-provoking addition to the neuroethics literature. The Ethics of Uncertainty presents a useful approach to decision making at one of the most complex intersections of ethics, medicine, and law. Since the term 'persistent vegetative state' was coined in 1972, decision makers for patients with disorders of consciousness have struggled with the question of whether to extend or continue their life-sustaining medical treatment. Johnson helps the reader understand how the diagnostic uncertainty surrounding disorders of consciousness can lead to ethical uncertainty. The analytic journey demonstrates that an 'all things considered' approach best addresses the continuous developments in clinical knowledge, the epistemic and ethical risks, and the need to act justly in each case. She provides an important resource for all those struggling with medical decision making for patients with disorders of consciousness and lays the groundwork for similar analysis of other situations. The Ethics of Uncertainty by Syd Johnson is a breath of fresh air in the ethical reflection about consciousness and related disorders. It is a passionate and conceptually deep effort to open up new ways of thinking about and taking care of people with dramatic brain injuries. The ethics of uncertainty is an insightful heuristics that promises important contributions also in the discussion of other pressing bioethical topics. This book is really the push we needed to think further. Multidimensional uncertainty is pervasive in the care of patients with acute and chronic disorders of consciousness. L. Syd M Johnson charts significant new territory by focusing on uncertainty and its epistemic and ethical implications; this book should be indispensable for bioethicists and clinicians committed to improving the care of these patients and their families.