Minimally conscious patients not being tracked

As many as 100,000 are under 'custodial care'

While the media glare on cases like those of brain-damaged, "vegetative" patients such as Terri Schiavo and Terry Wallis has brought plenty of attention to the questions surrounding the recovery of severely brain-injured patients, it has done little to clear up confusion, according to medical ethics experts.

But a nationwide epidemiological study on how such severely brain-injured patients are being cared for long term could provide more concrete answers, according to New York Presbyterian/Weill Cornell Medical College ethics director Joseph Fins, MD.

The questions don't just deal with how patients are being cared for, he points out. "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," he points out.

Fins and colleagues recently reported on an Institutes of Medicine (IOM) exploratory meeting on disorders of consciousness, and their findings appear in the January issue of the American Academy of Neurology journal Neurology.1

"Getting those numbers [of patients being treated] 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," adds senior author Kathleen Foley, MD, who chaired the IOM exploratory meeting. Foley is professor of neurology and neuroscience and professor of clinical pharmacology at Weill Cornell, and an attending neurologist at NewYork-Presbyterian/Weill Cornell.

"Without national data, we don't know how many patients are in this situation. In fact, we don't even know how frequent or likely recoveries like [Terry Wallis'] might be," she notes. "Obviously, we need to do a better job of keeping track of all patients with disorders of consciousness, including periodically reassessing them for any changes in neurological function. That sort of database would greatly enhance research."

Wallis — Different from Schiavo case

The case of Terri Schiavo, a Florida woman whose family waged a war over her right to die vs. her right to remain alive in a nursing facility, grabbed headlines for more than a year, ending in her death in 2005 after her husband was granted permission to have her feeding tube withdrawn. Prior to her death, Schiavo had been diagnosed by neurologists as being in a permanent vegetative state, and an autopsy later confirmed the diagnosis, showing large areas of fluid-filled space in her brain.

Terry Wallis' case took a much different turn. The 42-year-old Arkansas man had been severely brain injured in a motor vehicle accident in 1984, and spent the next 20 years in a minimally conscious state in a nursing facility, receiving little more than what Fins and his co-authors call "custodial care." However, in 2003, he began talking and moving, and is now able to form sentences and move his legs and one arm.

Fins' co-author Nicholas Schiff, MD, a neurology professor at Weill Cornell, who has worked extensively on the Wallis case, says that unlike Schiavo, minimally-conscious patients like Wallis show "intermittent but unmistakable" signs of consciousness.

Schiff says his research suggests that Wallis' brain has been slowly forming new neuronal connections since his accident, allowing him to eventually wake from the minimally conscious state.

"Cases like those of Schiavo and Wallis tend to blur the lines between the minimally conscious state and the vegetative state," says Fins, pointing out an important distinction often lost in media accounts about cases of brain injury.

"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 of giving loved ones realistic expectations of patient outcomes — good or bad," he adds.

Identifying, differentiating cases crucial

Schiff, Fins, and Foley say in their report that identifying and encouraging the recovery of patients such as Wallis is one reason scientists need the resources to track the care of brain-injured patients in the United States.

Fins says the Wallis case "demonstrates that, even years after injury, the minimally conscious brain has the potential, in rare cases, for recovery. It also lays out the possibility that this process might even be accelerated and helped."

More than 100,000 patients in the United States are thought to be in long-term care facilities under custodial care, which involves little consistent follow up, the authors say. If those patients were tracked and periodically re-evaluated, Fins writes, scientists could get a better grasp of disorders of consciousness and how they vary from patient to patient and over time.

"For example, 16% of patients in the vegetative state six months following traumatic brain injury recover consciousness at one year, with about a quarter of them recovering independent function," Fins explains. "It is inaccurate to think that all disorders of consciousness are immutable and fixed."

But currently, a diagnosis of these patients is riddled with confusion and error, the authors state. According to some estimates, as many as 40% of patients in the minimally conscious state may be misdiagnosed by doctors as being in a vegetative state, which carries little or no hope of recovery. In Wallis' case, his family struggled with Medicaid requirements that limited the amount of therapy Wallis could receive, because it was based on how fast his progress was — and his progress was very slow.

"Again, it all comes back to our need for more insight into these conditions, their relative prevalence, and the changes that may or may not be going on neurologically over time," says Fins.


  1. Fins JJ, Schiff ND, Foley KM. Late recovery from the minimally conscious state: Ethical and policy implications. Neurology2007; 68:304-307.


For more information, contact:

  • Joseph Fins, MD, Chief of the Division of Medical Ethics, New York Presbyterian–Weill Cornell Medical Center. Address: 435 E. 70 St., Suite 4-J, New York, NY 10021. Email: