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.
Joseph J. Fins, MD, MACP is the E. William Davis, Jr, MD Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College, where he also serves as Professor of Medicine, Professor of Health Care Policy and Research, and Professor of Medicine in Psychiatry. He is the founding chair of the Ethics Committee of New York-Presbyterian Weill Cornell Medical Center where he is an attending physician and Director of Medical Ethics. Dr Fins co-directs the Consortium for the Advanced Study of Brain Injury (CASBI) and is an adjunct faculty member and senior attending physician at the Rockefeller University and Rockefeller University Hospital. The author of over 250 publications, Fins is a co-author of the landmark 2007 Nature paper describing the first use of deep brain stimulation in the minimally conscious state. He is an elected Member of the Institute of Medicine of the National Academy of Sciences, a Fellow of the American Academy of Arts and Sciences and an Academico de Honor of the Royal National Academy of Medicine of Spain.
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.