- 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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Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness 1st Edition
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"As the mother of a daughter with severe brain injury and an advocate for patients like her, I found Rights Come to Mind to be a compassionate call to action and a must-read. It should be thoroughly studied by families, professionals, and policy makers concerned about these patients. In every chapter and on every page, Dr Fins uses his knowledge of neuroethics and disorders of consciousness to broaden the civil rights of patients too long neglected, writing truly in the spirit of the Americans with Disabilities Act."
Marilyn Price Spivack, mother of Deborah Lee Price, cofounder of the Brain Injury Association of America, and Neuro-Trauma Outreach Coordinator at Spaulding Rehabilitation Hospital
"Dr Fins has written a powerful and ethically challenging book that introduces the science of severe brain injury in the context of the stories of families committed to the recoveries of their loved ones. Dr Fins knows this difficult terrain firsthand as the ethicist member of a team that has pioneered technologies intended to engage the conscious thoughts of individuals rendered by their injuries unable to communicate or even move."
Steven E. Hyman, Harvard University Distinguished Service Professor and Director of the Stanley Center for Psychiatric Research, Broad Institute of MIT and Harvard
"Dr Fins brilliantly captures the despair of families with brain-injured loved ones who are navigating Dante's rings of hell. He gives voice to those of us who choose to stand and fight for our loved ones. Rights Come to Mind aligns expectations, treatment, and nuance both at the bedside and in public policy."
Bob Woodruff, ABC News Correspondent, and Lee Woodruff, authors of In an Instant
"Dr Fins has provided us with a wonderful book that masterfully integrates the clinical and ethical challenges faced by medical care providers along with a deep empathy for the challenges faced by patients and their families. Above all this volume is a call, even a demand, to do better. I strongly recommend this thoughtful, readable, deeply informed, and challenging volume."
Harold T. Shapiro, President Emeritus of Princeton University and former Chair of the National Bioethics Advisory Commission
"Rights Come to Mind is a beautiful book that blends science, humanity, morality, and law to paint a far more nuanced picture of severe brain injury than ever before. The book teaches, moves, and provokes as it sets out its vision for the rights of this long-ignored population."
Abbe R. Gluck, Yale Law School
"Joseph J. Fins has woven a unique narrative covering both the science of unconsciousness and the lives of brain-injured patients. He offers readers detailed case reports, stories of illness based on extensive interviews with patients' family members, medical and scientific explanations of coma and the vegetative and minimally conscious states, critical commentaries, and an ethical and legal argument for the importance of advocating for the rights of this group or ignored and disadvantaged patients ... [Fins] is ideally poised to write this account ... [His] erudition in palliative care, ethics, and humanities is evident ... This is a highly personal work that illustrates both the individual impact of brain injury and the current deficits in the care of brain-injured patients. By successfully outlining both the human and humane dimensions of a scientific subject, the narrative bridges the gap between the sciences and the humanities ..."
James L. Bernat, Neurology Today
"Although not lacking in technical detail, Fins humanizes people with disorders of consciousness by describing a number of case studies in addition to Maggie's. This makes for a book that has broad interest and appeal, engaging both those readers who are interested in traumatic brain injury and those who relish the latest research and treatment. For readers at all levels of expertise and sophistication, this book is an interesting and often fascinating read."
Elizabeth V. Swenson, PsycCRITIQUES
"Fins offers an impassioned plea for the rights of those suffering in MCS, invoking the legacy of the Civil Rights Movement. Here lies the casus belli of his work: a belief that MCS patients are being lumped together with PVS patients and denied their rights to participation in the community of humankind ... Rights Come to Mind is a multifaceted tour de force not to be missed."
Jacob M. Appel, Education Update Online
"Fins is a zealous advocate for the rights of those suffering impaired consciousness, and he sees an institutional injustice that demands change. For attorneys representing people with a brain injury and their families, this is an essential guide to medical and ethical dilemmas."
Shana De Caro, Trial
"Fins moves quickly beyond the profit and loss columns of conventional health care costs to invoke rights to adequate assessment and rescue, to a rehabilitation program adaptable to a variable time course of recover, and to being treated as a human being with (potentially but not always actually) a voice ... We should take up the responsibility to reveal a world of human experience into which many of us, despite ourselves, may one day find ourselves plunged. It behooves us to listen to that voice and add our own, crying in the wilderness for those who cannot find themselves there."
Grant Gillet, Hastings Center Report
"Rights Come to Mind is a compelling discussion of the actual lives of patients at the edge of consciousness, as well as the experiences of those caring for them. The book is a valuable resource for anyone interested in the medical, social, and personal dimensions of severe brain injury and resulting disorders of consciousness. Those directly and indirectly affected by these disorders, and indeed all of us, are indebted to Fins for presenting and assessing these dimensions in an informative, thoughtful and humane way."
Walter Glannon, The American Journal of Bioethics
"Rights Come to Mind is one of those rare works and may conceivably become an instant classic on the ethics of brain injury and disorders of consciousness ... The substantial intellectual grace and deep humanity that pervade every part of the book are a testimony to the scholarly excellence and exceptional academic generosity of its author ... [This book] marks a major milestone in the contemporary scholarship on the ethics of disorders of consciousness, in the narrative approach to medical ethnography, and in patients' rights advocacy. It is safe to predict that it will become a work of reference and reverence for everyone who is interested in these topics for many years to come."
Philipp Kellmeyer, Cambridge Quarterly of Healthcare Ethics
"A fascinating new book [which] carefully illustrates ... that predicting the course of any of the disorders of consciousness is not a binary, definitive-cure-versus-quick-death matter; instead, the existence, extent, and rate of each person's recovery varies along a continuum that often includes multiple gray zones ... the radical question that Fins forces us to address is precisely what, if any thing, we should be doing with the MCS population ... the central message ... is a profoundly disruptive one for certain parts of the health care system, and that fully is the book's intent ... [it] will properly shake up settled understandings and attitudes held toward a largely neglected but worthy segment of our population ..."
Marshall R. Kapp, Care Management Journals
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.
Top Customer Reviews
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.
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!
Tom Koch is a bioethicist and gerontologist engaged in chronic and palliative care.
Most Recent Customer Reviews
The author discussed this book as the key-note speaker at a conference I recently attended--quite fascinating! Dr. Read morePublished 11 months ago by Theresa McDonald
Very well-written and informative on a wide range of brain injury issues. I bought this because a friend sustained a severe traumatic brain injury in May of 2014, and I've been... Read morePublished 14 months ago by Joe Northrop