Resisting the urge to dehumanize patients with severe brain injuries

By Dave Andrusko

The intent of the last post of each day is always to be brief. But adequately discussing Prof. Joseph J. Fins’ New York Times op-ed “Brain Injury and the Civil Right We Don’t Think About” not only doesn’t lend itself to brevity, it is also so important it justifies a more elaborate examination.

Earlier today we posted an article from Breakpoint that outlined Prof. Fins’ narrative which revolves around Margaret Worthen and her mother, Nancy. The Times’ op-ed we are both alluding to was a kind of synopsis of Fins’ new book, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness, and an invitation to consider how we are unfairly and unjustly marginalizing patients diagnosed to be in what is called a “minimally conscious state” (MCS).

Briefly MCS patients, unlike patients in a so-called Persistent Vegetative State (PVS), are conscious. “They demonstrate intention, attention and memory,” Fins writes. “They may reach for a cup, say their name and notice you when you walk into their room.” There are two immediate problems.

First, these gestures are intermittent, which too often leads staff to think family are imagining these responses out of misguided hope. Second, a massive number of patients who are actually in a MCS are misdiagnosed as being in a PVS.

One study, Fins explains, “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.” (We’ve written about how much untapped potential for recovering PVS patients may have as well.)

What makes Margaret Worthen’s story of such great import was explained in a paper published last December. It revealed

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.

We’ve known for some time that the human brain is much, much more capable of recovering from massive injuries than previously thought. Referring to Margaret, researchers used magnetic resonance imaging and found

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

Fins’ argument is that is offering rehabilitation to MCS patients is akin to educating a young child. “Most rehab stays are six weeks or less,” he explains. “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 like 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.”

We’ve written about brain-injured patients on many occasions. The temptation to reduce them to semi-human status; to see caring for cogitatively impaired patients as “more trouble than it’s worth” is part and parcel of a quality of life ethos that has already made dangerous inroads into our culture.

I hope you will take a few minutes to read Prof. Fins’ marvelous op-ed. You will come away amazed at the adaptability, resourcefulness, and power of the human mind and the human spirit.