Signs of Consciousness

Evaluating patients with traumatic brain injuries takes care, rigor and a long-term commitment

By Judith Graham
Chicago Tribune

If there is an image that haunts medical experts who specialize in traumatic brain injuries, it is this:

A severely disabled patient, unable to communicate in any fashion, who seems unresponsive and disconnected from her environment, but who is more aware than anyone realizes.

For a moment, this image flashed across television sets earlier this year during the debate over Terri Schiavo. What if this Florida woman--diagnosed as being in a vegetative state--were conscious and no one knew, some wondered?

Not possible, medical experts responded. Given the number of times Schiavo was examined and the results from her brain scans, it's hard to question that judgment.

But what about other brain-injured patients languishing in nursing homes across the country who are labeled "vegetative" or "minimally conscious" but who may be more cognizant than those labels suggest?

No one knows how many people may be in this situation. About 1.4 million Americans suffer traumatic brain injuries each year. Rough estimates put the number of people in a vegetative state at 10,000 to 15,000; another 100,000 are believed to be partially conscious.

Experts readily admit much remains unknown about these disorders of the mind, including which treatments can help the brain recover from trauma and under what conditions.

Meanwhile, the prospect of misdiagnosis and neglect weighs heavily on some physicians.

"If you are conscious but are not identified as such, if you're isolated in a nursing home with no meaningful interaction of any kind, you've been exiled from the world," said Dr. Joseph J. Fins, chief of the medical ethics division at New York Weill Cornell Medical Center.

With colleagues, Fins plans to mount a first-of-its-kind study of nursing home patients who are diagnosed as vegetative. The project calls for a sample of these patients to get extensive neurological exams as well as advanced medical scans of their brains that track how they respond to stimulus.

One goal is to document how many patients may have transitioned to a higher level of consciousness after an initial diagnosis of "vegetative" without anybody noticing the change.

As it stands, several factors conspire to put severely brain-injured patients at risk of being misdiagnosed or misjudged.

To begin with, most physicians know remarkably little about these patients. In medical school, the average amount of lecture time devoted to traumatic brain injury is only four hours, said Dr. Jay M. Meythaler, chair of the department of physical medicine and rehabilitation at Wayne State University School of Medicine.

Then there's the assumption--a form of prejudice combined with ignorance--that hope has been lost when someone appears to be vegetative, or unresponsive to their environment in any deliberate way.

"We call this `therapeutic nihilism,' the misguided belief that these patients are beyond the help of any therapy," said Dr. Joseph Giacino, a neuropsychologist at JFK Johnson Rehabilitation Institute in Edison, N.J.

"People assign a `persistent' prognosis immediately, implying no recovery will occur, and this is often extremely misleading," said Dr. Jeffrey Frank, director of neurological intensive care at the University of Chicago Hospitals.

In fact, the best scientific evidence to date suggests that 52 percent of patients with traumatic brain injuries who are in a vegetative state one month after a trauma will recover some type of consciousness within a year. (Recovery after a year is thought to be extraordinarily rare.)

But what if someone has become profoundly compromised by trauma, losing the ability to articulate, change facial expressions, willfully move any part of the body, to see or hear? "Maybe they still have some kind of connection to the world around them, but how are you going to detect it?" Frank asks.

The simple answer is that it's extremely difficult, and often signs are missed.

A dozen years ago, Dr. Nancy Childs, a Texas neurologist, demonstrated this in a study showing that 37 percent of brain-injured patients were misdiagnosed as being vegetative when in fact they had minimal levels of consciousness or more.

At the time, the medical field was just agreeing on how to define and diagnose various disorders of consciousness. So, confusion among physicians played a part.

But so did a lack of comprehensive examinations, skill and perceptiveness on the part of medical providers; and those remain problems to this day.

Routinely, families report that physicians dismiss their observations and don't take time to find out what's really going on with someone disabled by a brain injury.

While some families do overreact, dismissing them is a mistake, Childs said, noting that patients often respond differently to loved ones than they do to strangers. "When you can barely do anything and it takes a tremendous effort to get that response out, you'll do it for someone who is recognizable versus someone who isn't," Childs said.

If the physician is seeing the patient only occasionally, behaviors that signify awareness can easily be overlooked.

"Even a well-trained neurologist or physiatrist may not have much experience examining patients of this type and may underestimate how extremely variable they can be from hour to hour and day to day," said Dr. John Whyte, director of Philadelphia's Moss Rehabilitation Research Institute.

How, then, can a reliable diagnosis be made when so much uncertainty exists?

At Texas NeuroRehab Center, where Childs is executive medical director, she observes patients directly five time a week. Separately, patients are seen at least once a week by occupational, physical and speech therapists, as well as a neuropsychologist. Round-the-clock nursing staff record their observations, and families are consulted. All staff are trained to detect "transitions in levels of consciousness," Childs said.

On entering the center and at regular intervals, patients get a highly structured exam to establish their baseline functioning and document any improvements. Over two months, an average stay at this Texas rehab center, experts get a pretty good idea whether a patient's condition is changing, Childs said.

Realistically, this kind of care is the exception for brain-injured patients, not the rule.

Instead, insurance companies are tightening reimbursement for rehabilitation of brain-injured patients, forcing centers to cut back on the length of time patients stay and the number of services they get.

The trend appears consistent across the country. At JFK Rehabilitation, patients with traumatic brain injuries now stay an average of 25 days, a week less than they did in 2000.

"This is barely enough time to do diagnostic work and not at all adequate to do significant interventions," said Giacino, who is having difficulty finding enough patients for his research.

In Illinois, "Some insurance companies now completely refuse to admit to rehab patients who are vegetative or minimally conscious or even show small amounts of purposeful activity," said Dr. Elliot Roth, medical director of the Rehabilitation Institute of Chicago.

Other companies will only pay for services when patients show "meaningful improvements day to day or week to week," he said, noting that this discounts the time it takes for the brain to recover and benefit from therapies.

Meanwhile, many patients who appear in a vegetative state are being discharged from hospitals directly to nursing homes, which typically are not equipped to deliver state-of-the-art care to people with head injuries.

Meythaler of Wayne State gives an example. It's common for brain-injured patients to be "extremely combative and agitated" when they begin to awake from unconsciousness, and it is common for nursing home staff to administer medications "to try to calm them down."

Yet drugging these patients just as they're waking "can permanently slow neuro-recovery," Meythaler said. "What you want to do is activate consciousness, not suppress it."

Frank of the University of Chicago calls these nursing home patients "neurologically abandoned."

Once a person is sent off to a long-term care facility, he said, it's rare to get expert, follow-up neurological evaluations. In practice, this means a patient could be transitioning from a vegetative state to a conscious state several months after his or her injury, and no one would notice because no one was examining the patient or even aware of this possibility.

"It certainly is something I worry about," Whyte said. "If you're in a nursing home that doesn't have a lot of neurological expertise--most don't--and you don't have family members watching you closely, you'd have to change enough for an untrained nursing assistant to take notice, and that's not very likely."

Whyte has written a standardized assessment for difficult-to-diagnose disorders of consciousness. It calls for a patient to be observed by several experts many hours a day in many environments responding to many types of stimuli, over three weeks.

If signs of consciousness are found, "Our highest priority is to establish a rudimentary communication system," Whyte said.

If someone can blink once for no or twice for yes, or can lift a finger in response to a question, that's all that's needed, he said, "to re-establish contact with the human world."

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