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In Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness, 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 of ignored and disadvantaged patients.
Fins, a, bioethicist, internist, and palliative care physician at New York–Presbyterian Hospital/Weill-Cornell Medical Center — one of the leading centers for the study of disorders of consciousness, led by Dr. Nicholas Schiff — is ideally poised to write this account. He has participated in many of the analyses this group has conducted to elucidate the neuroanatomy and neurophysiology of conscious awareness by studying patients with disorders of consciousness.
Fins' erudition in palliative care, ethics, and humanities is evident as he discusses these cases and conditions and the impact of illness on patients and families. He cites his own articles over the years, in which he has addressed many of the points and arguments assembled in this book.
Fins reviews the evolution of our understanding of the vegetative state, from its original description by Drs. Fred Plum and Bryan Jennett in 1972 through the work of the Multi-Society Task Force on PVS in 1994 and the more recent fMRI studies by Drs. Schiff, Steven Laureys, Adrian Owen, Martin Monti, and others who continue to illuminate this disorder. He devotes even more attention to the minimally conscious state, beginning with its initial description in 2002 by Dr. Joseph Giacino and colleagues and incorporating the recent fMRI studies by the same investigators. He describes the societal and medical impact of the highly publicized medico-legal cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo.
But most of his attention is devoted to the stories of a dozen or so brain-injured patients who had been referred to Weill-Cornell to be studied in their consciousness disorders research unit. Fins dedicates more than half of the book to detailed descriptions of the medical details and daily life of these patients. Their poignant stories offer a personal dimension to the illness that is absent from textbooks, scientific reports, and scholarly articles. The reader can empathize with the families as they struggle in the acute phase of the illness to understand the diagnosis and prognosis and later labor to ensure that the patient gets adequate rehabilitative treatment. Fins also describes the additional barriers to proper care of these patients erected by health insurance, home care, and extended care facilities.
Excepts from interviews with family members clearly communicate the extent of their anxiety, uncertainty, fear, frustration, and loneliness, as well as their love, loyalty, and heartwarming dedication to their loved ones. With their consent, Fins uses the names of nearly all the patients and family members in the cases he describes. In reading the cases from chapter to chapter, I found myself challenged to correctly identify each the names — a challenge not unlike trying to read a Russian novel.
Throughout the book, Fins integrates information from the case report of Maggie Worthen, a Smith College student who suffered a brainstem stroke from what appears to have been a basilar artery occlusion that initially produced coma and subsequently produced cycles of vegetative and minimally conscious states. His care of this young woman and interviews with her family members over time are discussed in several chapters as he explains the science and ethical issues of her medical management and the family's feelings and stresses. This parallel narrative illustrates and humanizes the author's medical and scientific explanations of disorders of consciousness.
Fins also devotes several chapters to a fascinating account of the case of Greg Pearson, the chronically minimally conscious patient who was chosen to undergo medial thalamic deep brain stimulation, which led to his improved functioning. In telling this story, Fins shows both the excitement of the medical team at achieving a successful and scientifically important intervention and the joy of family members at seeing their loved one respond for the first time in six years.
Fins ends the book with a spirited plea: As a society, he writes, we must work to ensure the rights of brain-injured patients. His argument that this issue fits squarely into the American civil rights movement spans ethics, law, and public policy, and covers the Americans with Disabilities Act, the Olmstead v. L.C. decision, the Brown v. Board of Education decision, and the Individuals with Disabilities Education Act. He strongly advocates for the rights of this vulnerable group of patients, who are often neglected and cannot speak for themselves. His advocacy argument is humane and compelling. Finally, in an epilogue, he updates the reader on the current condition of many of the patients discussed in the book.
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 and convinces readers that education in both disciplines is necessary for a full appreciation of the care of this special group of patients. In so doing, this book solves the “two cultures problem” — the mutual isolation of the sciences and the humanities — that was famously discussed in a 1959 essay by the physical chemist-novelist-scholar C.P. Snow, whom Fins cites. Only by understanding both cultures can we as caregivers and as a society fully comprehend the medical condition, plight, and optimum care of these patients.
Dr. Bernat is the Louis and Ruth Frank professor of neuroscience and a professor of neurology and medicine at the Geisel School of Medicine at Dartmouth College and Dartmouth-Hitchcock Medical Center. He also serves on the editorial advisory board of Neurology Today.