Dr. Joseph J. Fins writes about our habit of segregating patients who are minimally conscious from receiving meaningful rehabilitation, and the scandal that is our mis-diagnosis rate for patients like Terri Schiavo, wherein patients are classified as functionally brain-dead when in fact more than 40 percent are likely conscious:
Maggie was found to be in the “minimally conscious state” — a term medically formalized in 2002. Unlike vegetative patients, those in MCS areconscious. 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 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. …
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?
Dr. Fins’s entire op-ed is worth reading if you care about whats of medical care is provided to America’s most vulnerable patients.