NEW YORK TIMES 🔵 New Findings About Consciousness Are Changing How I Think About Patients

The fourth floor of the long-term-care hospital where I sometimes work houses patients with severe brain injuries. When I am called there to consult, I always hesitate before entering the room. Of all the ways that our bodies can fail, brain injuries are some of the most devastating to witness. Some patients moan involuntarily. Others lie still, their eyes open but unresponsive.

As I place my stethoscope on the patient’s chest, often without a word, I reassure myself that at least the patient is unaware. Her personhood is gone. She is “not in there” any longer.

But an increasing body of research indicates that patients who have suffered catastrophic brain injuries experience a far more complicated reality. A provocative large study published last year in The New England Journal of Medicine suggests that at least one in four people who appear unresponsive actually are conscious enough to understand language. As a doctor who sometimes sees patients like this, these findings are, in a word, terrifying.

Studies like this raise the possibility that there are tens of thousands of men and women locked inside their own minds, isolated to a degree I cannot even imagine. They are voiceless and largely invisible, with some of them being cared for in nursing facilities.

There are a handful of researchers in a few institutions working to identify these patients and develop tools they can use to communicate. A lack of resources is one major barrier. A larger one is philosophical. The way many doctors think about these patients reflects the medical system’s inability to deal with uncertainty, and even what kind of life we believe to be worth living.

I’ve often struggled with how to recommend care for patients with uncertain recoveries after brain injuries. As an intensive care unit doctor, I see patients in the early days following a catastrophic event, collecting as much information as possible to guide families’ decisions about whether to continue life-prolonging therapy or shift to providing comfort. These conversations are challenging, particularly when our neurologist colleagues say the patient just needs more time. I worry that continuing aggressive interventions, like the surgical insertion of a tracheostomy tube, might cause patients and their families needless suffering while chasing an outcome that might be unattainable. At the same time, I never want to withdraw life-prolonging support too early.