The last time I saw Margaret Worthen was in November 2012. She was in New York participating in a study of patients with severe brain injury. As soon as I walked into her room, I knew something had changed. She was still immobile, but she noticed my presence, was more attentive and engaged. And there was something else: She at times was able to use her left eye to answer simple yes or no questions. That morning, she seemed to relish her new found fluency. She responded with verve, as if the determined downward swoop of her eye could signal an exclamation point.
Communicating with one eye may not seem like much, but it was something to behold. Maggie, as she was known, had suffered a complex stroke six years earlier, during her senior year at Smith College, that involved areas deep in her brain. She had been thought to be in the “vegetative state” — the term commonly used to define the unconscious brain state most of us associate with the right to die movement and the legacies of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo.
Later, Maggie was found to be in the “minimally conscious state” — a term medically formalized in 2002. Unlike vegetative patients, those in MCS are conscious. They demonstrate intention, attention and memory. They may reach for a cup, say their name and notice you when you walk into their room. The problem is that these actions may be rare and intermittent, so when family members who witnessed them share their observations with staff members, they are often attributed to a family’s wishful thinking.
This may be true in individual cases. But often it is just part and parcel of the biology of MCS.
Indeed, at least one study indicated an alarming rate of misdiagnosis: it found that 41 percent of patients with traumatic brain injury who were in chronic care and thought to be in the vegetative state were in fact in MCS.
If not for the astute observations of her Boston neurologist, Maggie, too, would have been misdiagnosed in perpetuity. But instead, she was expressing herself one blink at a time. For a young woman who had been thought permanently unconscious, this was truly a heroic accomplishment.
Maggie’s mother, Nancy, who gave me permission to tell her family’s story in my book, “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness,” never thought this would be how her daughter’s life would turn out. She had other expectations for her beautiful daughter, who studied Spanish, played Frisbee and aspired to be a veterinarian.
Still, Nancy and Maggie made a life together after the stroke. And it was O.K. Nancy was grateful that Maggie had learned to communicate, while wishing she could do more than move that one eye. Still, she told me, it seemed like it was “enough to have a life, even a small life.” Maggie had things that many people didn’t have, she said — relationships, friends and family who loved her.
In the end, Nancy arrived at a sort of acceptance: “So, I don’t know. But I think a small life is O.K.”
We cannot know whether it was O.K. for Maggie. But the rudimentary communication channel established with her left eye was the start of a way to know what she might have thought. That we cannot yet know for sure did not mean that she had no preferences or wishes. Indeed the goal of those of us who do this work is to find out and try to provide these patients with the chance to again express their agency.
Maggie’s case — her “small life” — became very consequential when my colleagues at Weill Cornell Medicine published a paper last December in the journal Science Translational Medicine revealing what had happened within her brain following her injury. During the recovery of her ability to communicate, Maggie’s brain essentially rewired over a period of years.
Using magnetic resonance imaging, Daniel J. Thengone, a graduate student, and colleagues in the Laboratory of Cognitive Neuromodulation, led by Dr. Nicholas D. Schiff, were able to demonstrate a strengthening of structural and functional reconnections across the two hemispheres emanating from Broca’s area, the region in the frontal lobe responsible for speech. It showed, remarkably, that even a grievously injured brain could heal itself. It appeared to do so by a process bearing a strong resemblance to typical brain development. The ongoing reorganization of connections among neurons is a reprise of how the developing brain gets its start.
As notable as these findings were, they did not stem from a high tech or costly intervention. Instead, they were the byproduct of a mother’s love, speech therapy and a simple eye-tracking device that cost about $30. It was Freud’s “talking cure” in a modern guise, and no less significant for our understanding of resilience and the importance of interpersonal engagement.
Yet, access to care is strained for this population. Utilization reviewers, and insurance benefit companies will deny access to rehabilitation to many individuals when they leave the hospital because they are deemed not yet ready for rehabilitation. But when nearly half of those who could participate are misdiagnosed as vegetative when they are actually minimally conscious, this vulnerable group is further marginalized. Organizations like the American College of Rehabilitation Medicine have been calling for a comprehensive evaluation of patients after hospital discharge so that misdiagnosis can be prevented and those who might be helped can get the rehabilitation they need.
Even those lucky few who do get rehabilitation and are not shunted off to what is euphemistically called “custodial care” get too little time. Most rehab stays are six weeks or less. But if the brain recovers through a slow process similar to development, why do we provide — and only to those lucky enough to receive it — just a few hours of rehabilitation a week for six weeks? It would be akin to sending your third grader to school for half-days of classes for a month or two and telling them that they are now on their own. Now that we know that it takes years for the developing brain to learn and mature, a similar commitment to the recovering injured brain now seems indicated.
If we reconceived rehabilitation as education, no one would graduate after a six-week course of care. Instead, we would promote lifelong learning as a means to achieve a recovered life. If there is a legal obligation to educate the developing brain, should there not be a correlative responsibility to those whose brain are in a process of redevelopment and recovery?
These are radical propositions at a time of fiscal scarcity and serious debate about the fate of Obamacare and health care reform. Understood this way, one might see the surrounding politics as untenable and reasonably seek to spend resources elsewhere. But it would be a mistake to view our responsibilities so narrowly. What is at stake here is more than a simple insurance question or access to care. It is a more fundamental question of basic civil rights, leaving conscious individuals isolated and abandoned.
Tragically, the most fundamental rights have been have been denied patients in the minimally conscious state.
Take pain control, for example. When a minimally conscious patient is mistakenly diagnosed as vegetative and thus thought insensate, they may not receive analgesic pain management or anesthesia for medical procedures. If this occurs, they are incredibly vulnerable — unable to communicate, and thus unable to cry out in pain. This error of omission constitutes a disrespect for personhood that should be beyond the pale in any civilized society.
Of course, we can address this by better diagnostic assessments of a patient’s brain state, to differentiate the minimally conscious from the permanently unconscious patient. But we can do something more. We can work to restore the patients’ own voices, so that they can tell us whether they are in pain, and remind us that they are in the room. They remain members of the human community even though society has segregated them in chronic care.
I use the verb “segregated” deliberately, to invoke a time when separate but equal was the law. In the wake of legal advances like the Americans with Disabilities Act and the United Nations Convention on the Rights of the Disabled, which call for the integration of people with disabilities into civil society, how is the pervasive segregation of this population justified?
Part of the problem is that when these laws were written, the notion of reintegration was focused on physical mobility — the ramp on the side walk and the accessible workplace. It wasn’t about people whose means of integration required something more than a ramp. For minimally conscious patients, the ramp is the restoration of functional communication, which makes reintegration into its cognate — community — possible. When we restore voice to these patients we bring them back into the room and the conversation.
To accomplish this we must consider the basic relationship between these individuals and the state, and their civil rights as citizens. Legal protections have eluded this population precisely because they have been disenfranchised by their injury. They have fallen outside the scope of legal protections and been subject to abuse and neglect.
This is the civil rights issue most of us never thought about. But the long arc of justice is sometimes refracted through scientific discovery and medical advances.
I often speak to university students brought up in the era of L.G.B.T.Q. rights who can’t understand how my generation did not appreciate that people could love those they chose to love. They find it incomprehensible that this almost self-evident right had eluded earlier generations. I caution against smugness, suggesting that their own children may well ask them how they allowed society to ignore conscious individuals and deprive them of their rights.
We now can anticipate that there are large numbers of people like Maggie, who have the potential to communicate but are sequestered — indeed, segregated — in chronic care, isolated and abandoned by society. Some could be identified with proper screening and coaxed back through rehabilitation and emerging treatments. Now that we know this, we can’t look away.
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Brain Injury and the Civil Right We Don’t Think About