Rights Come to Mind

Through the sobering story of Maggie Worthen and her mother, Nancy, this book tells 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 fifty 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, Joseph J. 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.1. Decisions; 2. The injury; 3. Coming to terms with brain injury; 4. The origins of the vegetative state; 5. A shift since Quinlan; 6. Maggie's wishes; 7. Something happened in Arkansas; 8. From PVS to MCS; 9. Leaving the hospital; 10. Heather's story; 11. Neuroimaging and neuroscience in the public mind; 12. Contractures and contradictions: medical necessity and the injured brain; 13. Minds, monuments, and moments; 14. Heads and hearts, toil and tears; 15. What do families want?; 16. Deep brain stimulation in MCS; 17. Mending our brains, minding our ethics; 18. It's still freedom; 19. Maggie's in town; 20. When consciousness becomes prosthetic; 21. The rights of mind; 22. A call for advocacy.