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Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness 1st Edition

5.0 out of 5 stars 7 customer reviews
ISBN-13: 978-0521887502
ISBN-10: 052188750X
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Product Details

  • Hardcover: 250 pages
  • Publisher: Cambridge University Press; 1 edition (August 11, 2015)
  • Language: English
  • ISBN-10: 052188750X
  • ISBN-13: 978-0521887502
  • Product Dimensions: 6 x 1.1 x 9 inches
  • Shipping Weight: 1.5 pounds (View shipping rates and policies)
  • Average Customer Review: 5.0 out of 5 stars  See all reviews (7 customer reviews)
  • Amazon Best Sellers Rank: #1,390,081 in Books (See Top 100 in Books)

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Format: Paperback Verified Purchase
What does it mean to be "alive"? When we consider someone who is severely compromised by disability to be "alive" (or not) as a legal matter, what follows from the determination? If we "keep them alive" (sounds God-like), what dignity do we accord them if they are in vegetative or minimally conscious states? How do we treat them?

Oliver Sacks, whose death today is so painful to contemplate, taught the world an unforgettable lesson with his Awakenings patients and, indeed, with each patient he saw, each book he wrote and by his personal example of endless compassion. He taught us that there is always a person inside, behind the disfigurement, behind the mask of disability, behind the cruelties of disease and the indignities of decline.

Joe Fins, with his indispensable book, Rights Come to Mind, has pursued this conversation about grave illness and personal dignity into the intimate family conference, the doctor-patient relationship and even the courtroom, in a dramatic manner.

I repeat -- this book is indispensable. Everyone knows of someone who has been in a coma or vegetative state, perhaps even a persistent vegetative state. However, as Joe has shown repeatedly, not all vegetative states, even persistent ones, are permanent, and it is possible to recover from a vegetative state to a minimally conscious state and thereafter to emerge from a minimally conscious to a fully conscious state. My own beloved father was in a minimally conscious state for months, and I assure you, there is a world of difference, too seldom recognized, between being vegetative and being minimally conscious. Not to mention the difference between persistent and permanent vegetative states.

The stories in this book are remarkable, and you will not be the same after reading them. Suffice to say, there is more to being alive -- vibrantly, fully alive -- than meets the eye.
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Format: Paperback
It is hard to describe a book that charts the struggle for the understanding of very severe brain injury, the sort that leads to prolonged if not a lifetime loss of consciousness. This is part history, part-ethnography and part a call to arms to end the segregation and poor treatment of individuals who exist in a plain that we do not understand and yet we judge and dispatch to the far reaches of society, hidden from view.

Fins is an academic and yet this book is written in a style that will have much wider appeal, the narrative threads that are interwoven into the story (for it is in many ways a story) act to anchor the reader to reality, the knowledge that some of the protagonists go on to make changes considered impossible (and conversely some do not) adds a momentum to the book, it becomes a page-turner accordingly. Despite Fins clear and thorough knowledge of his subject, he create a love-letter here, a love-letter to the injured and their families and to a future where we may be able to make progress which would have been simply a dream a few years back.

I could not recommend this highly enough, I need a 6 star function!
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Format: Hardcover
This is a quietly radical book. It is at one level the history of recent changes in neurology's ability to accurately diagnose deep brain injuries, recognize differences of consciousness and then, in later chapters, treat them. At another it is an indictment of serious deficiencies in the U.S. healthcare system in relation to patients with these injuries. It documents in passing, quietly but damningly, the organ transplant officials seeking organs even when a patient's family is not ready to give up; the medical personnel who conspire in this unwholesome activity, and more generally the manner in which clinical guidelines stack the deck against patients and their families. Finally, at a broader level, this is a book that could only be written by an experienced neurologist whose concerns for ethical practice and treatment are as deep as those attending to clinical concerns. Unusually, in this ethic, Fins gives full voice to the familial caregivers of deep brain injury patients both as members of the care partnership and as persons needing help who are too often ignored. If there is a complaint it is that the book's critiques are soto voice. It should be read, however, as a clarion call for an engaged clinical and social ethic of care whose results are life affirming, life preserving, and life enhancing.

Tom Koch is a bioethicist and gerontologist engaged in chronic and palliative care.
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Format: Paperback Verified Purchase
Rights Come to Mind is a great book for those interested in brain injury, ethnography, and bioethics. It guides a reader through complex medical, ethical, and legal issues using a framework that is easily accessible and moving. By anchoring these issues through personal narratives of individuals and their families who have experienced severe brain injury, the book is engaging and easy to read. It provides useful perspectives for medical and health care professionals, families, and the general public in how we treat marginalized and vulnerable populations and what efforts can be done to help these patients and their families. As someone who is not in the medical field or does not know anyone who has experienced brain injury, the book still offers many insights that will be useful in my personal and professional lives. I highly recommend this book.
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