Review of 'Rights Come to Mind'

Game-changing scholarship in the sciences arrives in roughly two varieties. Some scholars engage in paradigm-shifting research and target their results toward opinion leaders within their fields. Another set of authors, although often gifted investigators themselves, makes its greatest impact synthesizing the works of contemporaries to distill a complex domain for lay audiences--think Steven Jay Gould or Carl Sagan or Steven Pinker. Dr. Joseph Fins, an internationally renowned authority in neuro-ethics, has achieved both of these feats simultaneously in Rights of the Mind, a seminal and authoritative work that explores the science, ethics and politics surrounding disorders of consciousness.

Rights Come to Mind weaves together three distinct narratives. The first, familiar to students of medical ethics, but likely not so to many clinicians or laypeople, is the dynamic evolution of neurology's understanding of brain trauma and consciousness disorders over the past fifty years. Starting with the shift from cardiopulmonary death to "whole brain death" in the 1960s, Fins introduces readers to the major diagnostic developments in the field: the first description of the persistent vegetative state (PVS) by Bryan Jennet and Fred Plum in 1972 and, thirty years later, the recognition of the minimally conscious state (MCS). The key distinction between the two conditions, which stands at the core of Fins' argument, is that PVS patients display "wakeful unresponsiveness" and remain unconscious while MCS patients display "definite albeit intermittent evidence of consciousness." Eventually, PVS patients can pass into a permanent vegetative state from which recovery is not possible, while MCS patients retain the potential for recovery at any point in time. Fins laces this history with snapshots of the classic cases in neurological ethics: the efforts of the families of Karen Ann Quinlan in New Jersey and Nancy Cruzan in Missouri to withdraw life-support, the intense public controversy surrounding Terri Schiavo, and, more recently, the seemingly miraculous recovery of Terry Wallis after nineteen years in a minimally conscious state.

The second narrative is the heart-rending story of Maggie Worthen, a Smith College senior disabled by a fluke brainstem stroke, and her devote mother, Nancy, who questions Maggie's diagnosis of PVS. Nancy brings her daughter to Dr. Fins' research facility at Cornell, where a thorough evaluation confirms that Maggie is, at times, conscious. Eventually, Maggie is equipped with a prosthetic device called My Tobii that allows her to communicate through moving her eye. (Worthen died in 2015, at the age of thirty-one, after the volume had gone to press.) Fins supplements Maggie's saga with those of dozens of other patients and families who have suffered with brain injuries of various sorts. Through these stories, he explores the challenges faced by both patients and families--from the financial and emotional burdens of care to an indifferent and often byzantine medical system. If there are villains in Fins' tale, they are insurance company bureaucrats and an intransigent government that provides treatment only on the basis of so-called "medical necessity" and rapid improvement, which seem out of place for illnesses that require patience for long-term recovery.

Finally, 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. His own work with deep brain stimulation, for instance, suggests that at least some MCS patients may be able to make significant recoveries. Cheaper, less invasive remedies may help others--such as the medications zolpidem and amantadine. But none of this is possible without proper diagnoses, which Fins fears are currently lacking.

Fins, who is the E. William Davis, Jr. M.D. Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College, has acquired a list of honors and awards as long as any in academic medicine. He also has a compelling gift for analogy, an ability to render lucid the thorniest issues in healthcare ethics--drawing comparisons to calculus and physics, but also the moon landing and the Lewis & Clark Expedition. We learn of the error potential in neuroimaging through an allusion to Matisse's The Conversation; he used the image of the diver in the Greek ruins at Paestum to explain the "eternal present" of some patients who emerge from MCS. These erudite, humanistic touches help made the volume a highly-compelling read.

Fins raises as many questions as he answers. What is to be done, for instance, with patients who show consciousness on neuroimaging but display no long term recovery? Some might see these scans as a sign of hope; others--including myself--find these results deeply unsettling, raising the prospect of fully aware beings trapped and suffering with no recourse. Not everyone will agree with all of Fins' answers. Yet what matters more is that he is asking the right questions, potentially launching a recalibration of attitudes toward MCS patients both among clinicians and the public at large. Rights Come to Mind is a multifaceted tour de force not to be missed.