Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness

Joseph J. Fins

(Cambridge University Press, 2015)

Hastings Center Fellow and Board member Joseph J. Fins, MD, tells the sobering story of one family’s struggle with severe brain injury and how developments in neuroscience call for a reconsideration of what society owes patients at the edge of consciousness. Drawing upon over 50 in-depth family interviews, the history of severe brain injury from Quinlan to Schiavo, and his participation in landmark clinical trials, such as the first use of deep brain stimulation in the minimally conscious state, Fins captures the paradox of medical and societal neglect even as advances in neuroscience suggest new ways to mend the broken brain. Responding to the dire care provided to these marginalized patients, after heroically being saved, Fins places society’s obligations to patients with severe injury within the historical legacy of the civil and disability rights movements, offering a stirring synthesis of public policy and physician advocacy.

  • Firsthand account of the first historic trial of deep brain stimulation in the minimally conscious state
  • Includes many exclusive interviews with patients’ families as well as accessible patient narratives with expert analysis
  • An up-to-date history of the science of using neuroimaging to better diagnose and treat disorders of consciousness and how neuroimaging is providing insight into these conditions
  • Examines policy challenges related to the care of patients with brain injury, especially in light of health care reform and the Affordable Care Act

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