'My Second Birth' Discovering Life in Vegetative Patients

For over 20 years, doctors thought Rom Houben was brain dead. But then, neurologist Steven Laureys discovered that the Belgian was very much awake. Experts say that up to 40 percent of those thought to be in a persistent vegetative state are, in fact, quite conscious.

EDITOR'S NOTE: Some of the scientific findings discussed in this story have subsequently been revised. For an updated story, please click here .

For half of his life Rom Houben, 46, had to listen to people say that he was as good as dead. At first, doctors would occasionally bend over him and wave their hands in front of his eyes, but because his gaze remained unresponsive, they eventually gave up. Caregivers would plead for some indication that he knew they were there -- a wink or a squeeze of the hand. But they too gave up after a while. Diagnosis: addressing him was pointless. There was no one home.

A former martial artist and engineering student, conversant in four languages, Houben was now wheelchair-bound, his body crooked and helpless. After his car accident, he became a creature that could just barely breathe, swallow and digest food, but was otherwise believed to be an empty shell of a human.

But the whole time, Houben was conscious -- and no one knew.

How did you survive those 23 years, Monsieur Houben? The man in the wheelchair makes a deep growling noise. He appears to be pondering the question. Suddenly his right index finger rattles swiftly across the keyboard attached to his armrest, and words appear on a monitor, one letter at a time. "I meditated, I dreamed that I was somewhere else," he writes. "And please call me Rom."

The man who became lost to his surroundings now lives in an attractive nursing home in Zolder, a town in northwest Belgium. He is still almost completely paralyzed, but he is capable of a small amount of movement in his right hand, which he uses to communicate. With the help of a speech therapist, who stands behind him and supports his hand, Houben can now write on an on-screen keyboard.

'My Second Birth'

His finger rattles across the screen again, as he writes: "I will never forget the day they discovered me, the day of my second birth."

It was a lucky coincidence. Steven Laureys, a Belgian neurologist, had heard about the case. Laureys, who heads the Coma Science Group at the University of Liege, had long suspected that many patients who are in a coma are in fact conscious, at least intermittently, but that their awareness goes undetected. But even Laureys had rarely encountered such an extreme case of doctors failing to recognize that a patient believed to be in a coma was in fact conscious. When Laureys pushed the man from Zolder into an MRI tube, large areas of the brain were lit up on the monitor. The cerebrum, with its gray matter, was apparently only slightly damaged, leading Laureys to the conclusion that the mind of the man in the seemingly empty shell of a body was in fact largely intact.

How could all of the people who had treated and cared for Houben have failed to notice this for so long? Laureys attributes this to a fault in the system. "Once someone is stamped as being 'not conscious,' it becomes very difficult to get rid of that label."

After his car accident, Houben was classified as a hopeless case, a coma patient in what is called a persistent vegetative state (PVS). Such patients have their eyes open, but they do not react consciously to their environment. Experts are relatively sure that they do not even feel pain. Their prospects of recovery are considered slim to nonexistent.

But this diagnosis is sometimes wrong. In fact, Laureys and his team have already uncovered dozens of such cases, and expensive tomography brain scans are not always necessary. As a recent study has shown, taking a thorough look at the patient is often all it takes.

Remnants of Consciousness

Laureys and his team of researchers examined 103 coma patients in Belgian clinics and nursing homes. Of those, 44 were considered clearly vegetative by their caregivers. However, the study reached a completely different conclusion: In reality, 18 of these 44 patients were in fact responsive, and there was evidence that remnants of consciousness were stirring in their brains.

The alarming conclusion is that more than 40 percent of PVS patients are incorrectly diagnosed as hopeless.

This is not necessarily the result of sloppiness on the part of the medical community. In the cases uncovered by the Laureys team, all of the doctors, nurses and speech therapists were convinced of the accuracy of their diagnosis. Shortly before performing their tests, the researchers asked the medical team to agree on the condition of the patient in question. The patient was then re-examined within 24 hours, but only if the medical team's conclusions were unanimous.

The researchers used a series of tests that systematically search for indications of consciousness. The patients must complete a number of tasks. For example, they are asked to look into a mirror that is being moving slowly in front of their faces. They are also asked to grasp a comb placed near one of their hands. In another test, a researcher claps his or her hands loudly behind the patients to see whether they turn their heads toward the source of the noise.

Involuntary Reflex?

The procedure can take hours. In addition, it should be repeated at various times of the day, because many PVS patients drift in and out between an awake and dreamlike state. It is important to catch them when they happen to be present.

It is rare for anyone to take the time necessary to perform this battery of tests. Even experts, as Laureys' study showed, often reach their conclusions much too quickly. If a patient happens to apply pressure with his hand later on, they tend to dismiss this as an involuntary reflex with no further significance.

But there is a great deal at stake. In patients who are in a vegetative state, the cerebral cortex, the center of higher mental function, is in fact completely destroyed. Other than good nursing care, there isn't much else that can be done for these patients. But it's a different story when parts of the brain are still active. Such patients sometimes respond when addressed, but they cannot communicate in an organized fashion. The parts of their brain that are still intact are no longer sufficiently connected, which explains why their minds flicker sporadically, but unreliably. Neurologist Laureys calls this a minimal state of consciousness.

A person in this state appears to understand some things. If a familiar voice tells a story taken from the patient's life, the neural networks for speech processing become active. More importantly, however, minimally conscious patients remain receptive to pain, even if they are unable to show this. "That's the key difference," says Laureys. "They have to be given painkillers when they need them. But that usually doesn't happen."

This is also a problem in Germany, where the medical community doesn't even differentiate between a vegetative and a minimally conscious state. As long as patients are being cared for in a clinic, this isn't necessarily harmful, because effective caregivers observe their patients to see, for example, whether they begin to sweat or grimace during a tracheoscopy. If that's the case, the patients are given painkillers until they relax again.

Overdosed

However, most PVS patients live in nursing homes or with their families. As a result, a doctor in private practice is usually the person responsible for alleviating their ailments, from back pain to spastic cramps, which are often chronic. "However, many are not qualified to cope with these patients," says Andrea von Helden, the chief physician at the Center for Patients with Severe Traumatic Brain Injury at the Vivantis Hospital in Berlin. "Most of them simply dispense with pain medication altogether."

Some coma patients, on the other hand, are routinely given doses of pain medication that are much too high -- because it's practical. "They are so drugged that they can't even wake up anymore," says Helden, who once took on an apparently unconscious patient who in fact was under a permanent overdose of anti-epileptic drugs. The dosages had hardly been corrected before the patient gradually returned to life. "The man lives at home now, and he can walk and speak," says Helden. "The nursing homes need to be combed through looking for such cases."

In Germany, about 100,000 people a year sustain severe traumatic brain injuries, of which roughly 20,000 remain in a coma for more than three weeks. Some of them die, while others regain their health. But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate state: they are alive, but they never quite return to full consciousness.

'We Always Knew Our Son Was There'

These patients are placed in long-term care facilities, provided their families can afford it. The system has a tolerably good reputation. In the better homes, music therapists perform for the silent residents, rabbits are set out to hop around within their field of vision and, in some places, trained therapy dogs lie with them in bed. These methods are effective, even with the most absent patients. In most cases, their heart rates settle down and their muscle tension diminishes.

With effective care even vegetative patients, as the case of American Terri Schiavo demonstrated, can remain alive for decades. But their fate is more or less sealed. Only 5 percent of PVS patients experience any improvement after a year.

In a minimally conscious state, on the other hand, many things are possible. American Terry Wallis was unresponsive for 19 years before suddenly addressing his mother as "Mom!" When a team of researchers in New York imaged his brain, the results were astonishing: Countless neural pathways had sprouted between the few intact areas of the brain. This enabled these previously isolated islands in the brain to resume contact -- a condition of consciousness.

Of course, no long-term patient has ever been able to walk again -- they all continue to require nursing care. But it is worthwhile to search for remaining sparks of intellect, says Andreas Zieger, a come specialist at the Protestant Hospital in the northwestern German city of Oldenburg. If Zieger had his way, all coma patients in Germany would be thoroughly examined. People with residual consciousness, says Zieger, have a right to receive special support, such as speech therapy, because there is always hope. As scientists know today, the brain is still capable of making minor progress after being severely damaged.

Dying of a Simple Infection

Berlin doctor Helden remembers a patient who fell into a coma two years ago. Today he can swallow on his own again, and he turns his head when his girlfriend walks into the room. "It doesn't seem like much, but it's a tremendous achievement for him," says Helden. "And if no one appreciates the progress these people make, they lose their drive and end up dying of a simple infection."

A persistent vegetative state is also believed to be an emotional drama. When a patient has suffered a shock, his consciousness is shut down in the interest of saving his life. "When that happens, the body must first slowly extend its feelers once again," says Oldenburg expert Zieger. Some nursing homes are so understaffed that they do little to help their patients acquire a taste for life again, and to entice and encourage them. "In those places, they are merely given palliative treatment, and they soon die."

Thus, the search for possible remnants of consciousness is often a matter of life and death. There is widespread agreement nowadays that an existence in a vegetative state, without high brain function, should not be prolonged at all costs when the patient seems to be suffering. But who would want to challenge the "quality of life" of someone in a minimally conscious state who, seemingly content and well-cared-for, dozes away in his bed and shows no desire to die?

"A vigil coma is a catastrophe for the family members, but for the patient it isn't the worst thing that can happen," says Helden, who believes that one shouldn't necessarily take an overly gloomy view. Take, for example, the feeding tube, a common symbol of misery and decrepitude, which is usually inserted into coma patients through the abdominal wall. People ask themselves: Who would want to live like that? "Nonsense," says Helden, "the feeding tube is usually well tolerated and is a true relief for the patient."

Real Fighters

Artificial nourishment prolongs life. Does that make it undignified?

The problem is a practical one in the day-to-day operations of hospitals and nursing homes. Every serious illness raises a fundamental question: Should the patient be treated once again, or should death be accepted as a possibility? The answer lies within the discretion of doctors and family members. The cards are stacked against those patients who have been in a persistent vegetative state for a longer period of time. After a year, conditions like pneumonia or urinary tract infections are often no longer treated with antibiotics.

But no small number of patients survives and simply continues to live. "As it is, only those with a strong will to live remain alive," says Helden. "They are real fighters."

One of them is Belgian Rom Houben, who was believed to be hopelessly vegetative. His case demonstrates, in particularly drastic fashion, how appearances can deceive.

Houben was in a car accident in 1983. His heart stopped and his brain was deprived of oxygen until the rescue workers arrived at the scene. When he woke up, he no longer had control over his body. "I screamed, but nothing came out," Houben writes today.

At the time, he could not have anticipated that his absence would last more than two decades.

Trapped Inside an Impassive Body

Houben survived by learning to live with the small amount of information that had remained accessible to his senses. He studied the goings-on in his nursing home as painstakingly as if he were watching a tiny slice of global theater: the quirky mannerisms of his fellow patients in the common room, the doctors' appearances in his room and the chatter of the nurses, who had no qualms about saying whatever they wanted to in front of Houben, who was supposedly incapable of hearing them. "It made me an expert on human relations," Houben writes today.

His parents often picked him up for outings, which became the adventures of his life. On bad days, he resorted to the ability he had developed to separate himself from his body and travel into the past or into a better state of existence as a pure spirit, which he increasingly felt himself becoming.

But the worst day of all was the day when none of his tricks worked anymore, the day his mother and sister came to visit and told him that his father had died. He was deeply affected by the news, and he wanted to burst into tears. But nothing happened. His body remained completely impassive, with his inconsolable brain trapped inside.

Doctors have trouble coping with Houben today. Their white coats make him rebellious. Nevertheless, he doesn't want to blame anyone, "not at all," he writes. "But I have only my family to thank for my life. The others gave up trying to find me."

Simple yet Robust

Since his liberation, Houben has been tapping away on his keyboard with growing enthusiasm, as long as the speech therapist is there to facilitate, of course. "Naturally, I tested him to rule out the possibility that it's actually the speech therapist doing the writing," says Laureys. "We are sure that Rom is conscious. Did you know, by the way, that he's already writing a book?"

To perform the test, Houben was shown a couple of objects while his assistant was away. When she returned, he was asked what he had seen. "He passed the test", says Laureys.

In the beginning, right after Houben's consciousness was detected, the Laureys team found a simple, but robust way to communicate with its patient. Houben has kept some mobility in his right leg, too, so he could answer yes/no questions by pushing his leg. Later on, he learned to express himself by means of a simple yes/no keyboard. It was not until he had mastered that device that he took to learning how to type away on an alphabetical keyboard.

After this lengthy training he is now able to hit the keys -- albeit with many typos -- even if he is not always looking at them (his eyesight isn't very good anyway). His screen is the only object in the world with which he can truly interact, and he focuses on it constantly. Not surprisingly, over time he has developed the ability to touch-type very fluently.

In a certain sense, the man was simply unlucky. He completely failed the most common consciousness test, in which the researcher examines whether the patient's eyes follow the movements of a finger, for example. Houben never responded. His doctors know today that his eyes were very sensitive at the time, and that normal daylight was too bright for him. The doctors could gesticulate at much as they wanted to, but the patient, blinded as he was, simply couldn't see.

Weary of the Exercise

"Rom didn't have good doctors," says Laureys. But even better doctors could have made the same mistakes. The consequences of brain damage vary widely. In many cases, it takes a great deal of sensitivity to find a sensory channel to the patient that is still intact. Some appear to be completely unresponsive but are in fact merely deaf. In those cases, doctors have to write down or draw pictures to indicate what they want the patient to do.

To make matters worse, almost all of these patients have had horrific experiences. They often descend into delirium, or they simply tire of making the effort to stare at a stranger's finger. For this reason, experienced researchers prefer to use a mirror instead of a finger, because a patient's own face is a much stronger stimulus. Even those who are weary of the exercise have difficulty ignoring their own face.

The one thing that is clear is that the conventional method -- diagnosis by approximation -- is much too superficial. For this reason, the thorough test that was used in Laureys' study is now required in government-run nursing homes in Belgium. Experts refer to it as the "Coma Recovery Scale Revised." The test consists of 25 tasks, which range from grasping various objects to reacting to sounds. The subjects must perform a task successfully several times in a row so that random reflexes can be ruled out.

The testing procedure is prescribed in detail, and the process ends with a clear diagnosis. Nothing is left to the discretion of personnel, which makes the results comparable for the first time. "Every patient," says Laureys, "should be tested at least 10 times before he is definitively classified as vegetative."

When such thorough testing is not performed, the only hope for minimally conscious patients is often the dedication of family members who refuse to be deterred by skeptical doctors.

Waving Goodbye?

Of course, the doctors are not always wrong. The outcome of the consciousness test can also be negative. And sometimes family members get carried away with their exaggerated hopes, becoming virtuosos of interpretation and making conclusions that don't exist. They simply cannot believe that the person lying in a hospital bed doesn't recognize them, particularly when he smiles at them with such a faraway expression on his face. And then, they argue, didn't his hand emerge from under the blanket just as they were waving goodbye?

In these cases, a brain scan at the Coma Science Group in Liege can provide more definitive information. Neurologist Laureys presents recent images from the CT machine, showing the brain of a 15-year-old girl who fell into a coma after ventricular fibrillation. Her parents and nurses were convinced that the girl had retained some consciousness. But the images are clear: The cortex, with its gray matter, has been wiped out. Only the brainstem, which controls the involuntary body functions, remains intact. The parents are left with little choice but to accept the results of the scan.

Fina Houben, Rom's mother, was just as convinced that her son was still conscious. "Rom relaxed when I asked him to, while I was putting his clothes on, and he turned his head toward me. The doctors claimed that those were just reflexes," she says, "but we always knew that our son was still there."

Translated from the German by Christopher Sultan
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