In November 2000, a Colorado woman named Christa Lilly lost consciousness after suffering a heart attack and stroke. She spent the next six years in what neurologists call a “minimally conscious state,” and what most people think of as a coma.

But early last month, she awoke and spent the next three days talking with her mother, children, grandchildren and even a local television station, before slipping into the coma again.

Cared for at home by her mother, Lilly had reportedly awakened for briefer periods several times before over the years, but this was the first time her doctor had witnessed the short recovery firsthand. Colorado Springs neurologist Randall Bjork told the Denver Post, “I didn’t believe her,” when 73-year-old Minnie Smith insisted a year ago that her daughter had brief periods of lucidity. This time, she brought Lilly to the doctor’s office so he could see for himself.

The case of Christa Lilly and others—such as Terry Wallis, a 42-year-old man from Arkansas who began speaking in 2003 after 19 years in a minimally conscious state following a car accident—raise questions about how to care for people with catastrophic brain injuries.

Most neurologists agree that people such as Wallis and Lilly differ fundamentally from patients like Terri Schiavo, the Florida woman whose family engaged in a legal tug of war over whether or not she should be removed from artificial feeding tubes after more than a decade in a persistent vegetative state, which doctors define as a lack of awareness of self or environment and no evidence of purposeful or voluntary response to stimuli. (Schiavo’s autopsy findings confirmed that diagnosis.)

People in a minimally conscious state, on the other hand—like Lilly—show periodic but unmistakable signs of consciousness. Unfortunately, patients who do have this level of consciousness aren’t necessarily getting the kind of care they might need to recover to the best of their abilities. A new article in Neurology, authored by brain-injury experts from Weill Medical College of Cornell University, reports that an Institute of Medicine meeting on consciousness disorders underscored an urgent need for better research into the issue.

At least 2 percent of Americans live with some form of traumatic brain injury, according to Dr. Nicholas Schiff, an associate professor of neurology and neuroscience at Weill Cornell, one of the authors of the paper, and an expert in minimally conscious states. Moreover, that 2 percent figure is likely to rise given the unprecedented number of soldiers who are returning from combat in Iraq with brain injuries.

However, knowledge about how these patients are being cared for is scant. “Right now, we don’t even know how many Americans with conditions such as the vegetative state or the minimally conscious state are being cared for in medical centers and nursing homes nationwide,” said the article’s lead author, Dr. Joseph Fins, chief of the Division of Medical Ethics in the Departments of Public Health and Medicine at Weill Cornell.

According to the authors, more than 100,000 Americans are thought to be living in long-term care facilities in the United States under “custodial care,” with little consistent follow-up—meaning that many probably receive little therapeutic stimulation or expert medical evaluation. The authors also suggest that as many as 40 percent of patients in a minimally conscious state may be misdiagnosed as being in a persistent vegetative state.

“It’s an embarrassment,” said Schiff. “One would like to think we can bring to bear the technology and resources we have more systematically to identify patients who harbor greater [cognitive] reserve, without them having to spontaneously recover from a minimally conscious state at a decade or so. We have an excellent system of getting people into custodial care, but we don’t have any kind of guidelines or systematic approaches to looking at who we should reevaluate and do more imaging studies with at six months, nine months, a year or more.”

As a starting point, the group called for a nationwide survey on just how many severely brain-injured patients are being cared for, and where. “Getting those numbers in a countrywide survey is an essential first step for the kind of research that would help us in the diagnosis, prognosis and treatment of these severely debilitating conditions,” said senior author Dr. Kathleen Foley, a professor of neurology, neuroscience and clinical pharmacology at Weill Cornell.

In addition, Schiff said, “We need systematic screening procedures and approaches to identifying residual cognitive reserve in patients with severe brain injury, and strategies for palliative and restorative care to optimize things like their ability to communicate.”

“Cases like those of Schiavo and Wallis tend to blur the lines between the minimally conscious state and the vegetative state,” observed Fins. “But we have an opportunity now, with advances in brain-imaging technology, to improve our understanding. Even a modest investment in epidemiological and clinical research will pay off with better diagnostics; and better means giving loved ones realistic expectations of patient outcomes—good or bad.”

About the Author

Gina Shaw is the medical writer for The Washington Diplomat.