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.

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

Table of Contents

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.