by Sanjay Gupta
The tide began to turn in 1967 when Dr. Christiaan Barnard, a South African surgeon, convinced South Africa to pass legislation allowing two neurosurgeons to declare a patient brain-dead if the brain showed no detectable activity. That legal victory helped Barnard find the donor he needed to perform the first human heart transplant in December of that year. 3 In 1970, Kansas became the first U.S. state to recognize the concept of brain death, and others quickly followed. The legal change was hastened along by the sensational trial of pioneering heart surgeon Dr. Richard Lower, who was hit with murder charges in Virginia after transplanting the heart of a brain-dead donor. He was acquitted in 1972, and the case was followed by a loosening of legal restrictions around the country. Even now, some countries—including Japan—cling to a definition of death based primarily on stoppage of the heart. 4 But not the United States. If you’re an American watching over a critically ill relative, it’s more likely you will hear that they are brain-dead than that their heart has quit beating.
The thing is, brain death isn’t always easy to figure out. There’s a range of similar diagnoses, from a vegetative state to simply saying that a patient is in a deep coma. Most coma patients are measured with the Glasgow Coma Scale, which gauges alertness, responsiveness to stimuli, and the ability to communicate. The scale runs from 3 to 15, with 15 being normal consciousness and 3 being total unresponsiveness. At his low point, Ragucci was a 3.
Many patients with such severe damage don’t make it out of the hospital. Those who survive almost always emerge with catastrophic disabilities, like permanent man-in-a-barrel syndrome or the total loss of speech. Many patients never truly wake up, although they may progress to a stage where they sleep and wake on a regular cycle, even as they display no awareness of themselves or of their surroundings. A good example, according to her doctors, was Terri Schiavo, the woman who in 2005 reignited the debate about the definition of death. Patients like Schiavo may move muscles or even open and move their eyes, but the movements are simple reflexes. This is known as a vegetative state. 5 You might have heard of a persistent vegetative state or a permanent vegetative state; this is exactly what it sounds like: doctors see no hope of getting better.
A notch higher on the scale is something called a minimally conscious state. This diagnosis was only formalized in 2002, as researchers grasped for more fine-tuned distinctions. A person in a minimally conscious state may appear vegetative most of the time but show occasional glimmers of awareness. They might demonstrate “intent,” the ability to plan movements; they might remember new information; they might track objects with their eyes or even make efforts to communicate.
Non-doctors often use the phrase brain dead interchangeably with these other conditions, but true brain death is something else. It means that not only higher brain areas are wiped out, but also the brain stem, which is the seat of functions like breathing and heartbeat. A patient who is brain-dead cannot survive without complete mechanical support of their breathing and circulation. Another thing about brain death: We’ve been taught that it’s final. Patients don’t get better. Someone who is brain-dead isn’t really a person anymore; they’re a vessel preserving the individual organs.
Each diagnosis—brain death, vegetative state, minimally conscious state—is a crucial and yet often blurry marker on the landscape of consciousness. Making matters even more complicated, a patient may improve or decline from one state to another. It’s exceedingly hard to tell whether a particular patient might or might not get better, even though the very language of the diagnosis—“permanent,” “perpetual”—suggests a degree of certainty.
The average person peering into the hospital room would have a hard time telling the difference between a brain-dead patient and someone in a persistent vegetative state, or even a minimally conscious state. More alarming, many doctors, even trained neurologists, can’t tell the difference either. One study of patients in nursing homes found that of those who were diagnosed as being in a persistent or permanent vegetative state, about one in three actually became fully conscious within a year. Joseph Fins, a physician who oversees ethical consults and end-of-life care at New York-Presbyterian Hospital/Weill Cornell Medical Center, says the field is crying out for better diagnostic methods: “It’s a situation we would find intolerable anywhere else, to have a third of all the patients misdiagnosed.” 6
Although his specialty is internal medicine, not neurology, Fins has taken—almost by accident—a leading role in the medical debate over how to measure consciousness and the odds of recovery. For nearly two decades, Fins has sat on the ethics committee of Weill Cornell Medical Center. The committee meets to discuss all sorts of complicated cases—for example, a little more than a decade ago, Fins was confronted with the case of a patient who had advanced metastatic cancer. Pressure from the tumor had forced the patient into a coma, and her doctors were unsure how much they should do to ensure that the woman did not suffer. Pain-relieving drugs like morphine are dangerous in high doses because they depress the respiratory system, so it’s considered safer to withhold them. On the other hand, doctors would never do that to a conscious patient, because the pain might be unbearable.
“The question was, ‘Should we treat this patient’s pain?’ ” Fins recalls. “Could they perceive their pain?” Fins realized he had no idea what the answer was. While considering the case, he recognized a neurologist named Nicholas Schiff in line at the hospital cafeteria. Fins didn’t know him well, but Schiff had a reputation as someone who thought about these things. “So I asked Nico to write a commentary [for The Journal of Pain Management],” said Fins. “And that was the beginning of a beautiful relationship.”
Schiff had been interested in consciousness for a long time. His mentor was Dr. Fred Plum, the neurologist who first coined the phrase “vegetative state” back in 1972. 7 Today, Schiff is one of the hottest names in medicine; in late 2007, he was named one of Time magazine’s one hundred most influential people. He’s seen his share of shocking recoveries.
Most famously, in 2006, Schiff examined the brain of an Arkansas man who had woken up after nearly two decades in a coma. Terry Wallis was nineteen years old, with a five-month-old daughter, when his pickup truck veered off the side of a steep hill. Along with causing severe brain damage, the accident left him completely paralyzed. Nineteen years later, a nursing-home aide, making conversation, asked who was coming to visit that day. The aide’s jaw dropped as Wallis answered, “Mom.” Within months, he was speaking frequently and had even regained the ability to make new memories. 8 His family allowed Schiff to peer inside Wallis’ brain, using PET scans and diffusion tensor imaging. He found that Wallis had grown new brain connections, working around the severe damage he suffered in the crash. 9 That’s pretty surprising to many people; until recently most doctors were taught in medical school that brain cells, once dead, do not regenerate.
As it stands now, neither brain imaging nor standard clinical exams are very reliable as far as determining a coma patient’s true level of consciousness, much less how likely it is they’ll get better. 10 Looking at behavior or looking at what brain parts are damaged—that only scratches the surface. It doesn’t tell you what the neurons are doing. In the meantime, hospitals and insurance companies don’t have the time to wait for answers. It’s pretty alarming when you think about it. “You see people all the time,” says Schiff. “They’re three weeks out from the injury; they’ve got one week left on your standard thirty-day stay that you get with modern insurance. And the diagnosis between minimally conscious state and vegetative state might make the difference between staying in the hospital for treatment and going to a nursing home.”
Fins weighs in: “In the old days, it was almost easier. The doctor would come out and say, ‘There’s no hope.’ But today, it’s more complicated. These pronouncements need to be evidence based.”
We do know a few things. It turns out that two factors are especially important when it comes to determining the odds: one is ho
w long a person has been in a coma; perhaps even more important is how they got there in the first place. A patient who lost blood flow to the brain because of a stroke or cardiac arrest generally fares worse than someone with a traumatic brain injury, like what you would get from a car accident or a blow to the head. The reason isn’t complicated: an injury might damage only parts of the brain, whereas a loss of oxygen will damage every single cell. Terry Wallis was injured in a car accident. However, after suffering a cardiac arrest and going without oxygen to his brain for at least five minutes, Zeyad Barazanji was at an even higher risk.
ON THE EIGHTH floor of New York-Presbyterian Hospital/Columbia University Medical Center, Barazanji lay senseless, surrounded by tubes, oblivious to the glorious view of the Hudson River from just across the hall. The sliding glass doors could not keep the space from feeling cramped; almost every last inch was taken up by the bed and the stacks of machinery beside it. The one exception was the chair on which Barazanji’s wife, Raoua, sat silently holding her husband’s hand.
It had been nearly a week since he arrived in the unit, taken by ambulance in the dead of night from another hospital bed less than two miles away. He hadn’t stirred when paramedics drove under the high arching stone above the ambulance arrival zone or when his stretcher was jolted out of the ambulance’s back and wheeled through the quiet hospital lobby. Settled in his room on the eighth floor, he wasn’t stirring at all. 11
Although his eyes were closed and there was no obvious indication that a spirit flickered behind them, the rest of his body had been the site of a raging battle for several hours. Barazanji’s skull had a hairline crack where his head had struck the side of the treadmill from which he fell. Between that blow and the lack of oxygen from his cardiac arrest, the cells and tissues of his body were bruised and swelling in agitated response—most alarmingly, in his brain.
For Raoua Barazanji, 12 it was terrifying. Her husband lay as if asleep, pale machines and tubing bristling, it seemed, from every inch of skin. She could read the concern on the faces of the doctors who stopped by his bedside. Dr. Stephan Mayer had started Barazanji on the non-FDA approved hypothermia. Cooling pads were wrapped around Barazanji’s arms and legs, and he was strapped into what looked like a padded vest—each compartment filled with cold liquid, cooling the fire that raged in every tissue of his body. Old cells would need to heal; new ones would need to grow. It would take energy and time. The cooling would help buy that time.
Mayer had promised Raoua and the patient’s niece that he would try everything, but even Mayer was not optimistic. Like many patients whose brain goes without oxygen for an extended period of time, Barazanji’s brain was being rattled by seizures. It was frightening to watch the normally calm professor’s body being wracked by uncontrollable shakes. Soon these seizures were coming every few minutes. It was quickly becoming a life-threatening condition called status epilepticus.
Status epilepticus is the uncontrolled firing of neurons in the brain. Our nervous system is made of neurons, forming the grid that carries all the information that our brains send out and receive, whether it’s working out a math equation, telling a finger muscle to start wiggling, or feeling pain when that finger is pricked. The signals are transmitted across synapses, minute gaps between the neurons. An electrical charge causes the release of chemicals that bridge the gap. To function, neurons require a brief period of rest to recharge the supply of chemicals. In a brain gripped by seizures, that rest never comes. Unchecked, the condition is a death spiral. A brain that’s continually seizing is constantly burning fuel, burning energy. As a rule of thumb, if status epilepticus continues for more than an hour, neurons start to die and the patient with them.
To stop the electrical frenzy, to keep the brain circuits from burning themselves out, the Columbia physicians gave Barazanji a massive dose of the sedative propofol. Over the course of an hour, the brain waves on the EEG monitor turned from a spiking, storm-driven sea to shorter, gently rolling swells. Barazanji was in a deep, medically induced coma. As Dr. Mayer, the chief neurologist, explained it to Raoua, sedation along with the cold was just like wrapping the brain in cotton to let it heal. The neurons would have a chance to rest, a chance to recharge and recover. Or so they hoped.
IT WAS ON this same floor, five years earlier, that Mayer met the patient who forced him to rethink his whole approach to neurointensive care. Mayer first heard about Mark Ragucci when he got a call from Ragucci’s wife, Laura. A doctor like her husband, she crisply laid out the situation. Mark had already been in a coma for more than two weeks at another New York hospital. The physicians there, she said, were “laying the crepe,” as doctors sometimes say about cases deemed hopeless. The family wasn’t happy. They wanted to give Mark every possible chance of survival. Moved by the strength of the request, Mayer agreed to take a look.
“We did something in our unit that we never ordinarily do,” said Mayer. “Usually, we only transfer patients from other hospitals if we think there’s something we could do to help them that they can’t get at their present hospital.” Mayer paused. “In this case, we really didn’t think we had anything to offer.”
Although he agreed to take the case, Mayer privately agreed with the assessment of the other neurologists. He too thought that if Ragucci somehow made it out of the hospital, he would live out his days in a futile, eyes-open coma. Beyond the grim clinical picture, Ragucci’s MRI images were the clincher. A healthy brain scanned by MRI looks like a symmetrical sculpture of grays and black. On Ragucci’s scan, there were half a dozen large white blotches scattered around the picture. Two of them lay just two inches behind his eyes, the largest about the size of a quarter. Ragucci had holes all over his brain. Each white blotch was dead tissue, the cells burst open, destroyed by a lack of oxygen. For a neurologist, the writing was on the wall. The patient would not survive without never-ending artificial respiration and a feeding tube. Not a life that anyone would want.
The ambulance delivered Ragucci to Columbia the week after Christmas. Bad as the prognosis was, it can be hard to make long-term predictions about brain-damaged patients—at least, in the first few weeks of their condition. That meant there might be a tiny sliver of hope. Mayer told me, “When he got to Columbia, on exam he was brain-dead. His EEG was flatline. But we had no idea how much of that was irreversible brain damage and how much was the anesthesia.” To get a better sense of things, Mayer wanted to take more MRI scans. But when Ragucci’s mother and wife heard that Mayer was booking the imaging suite, they confronted him: no more MRIs. If the scan looked hopeless—and they suspected it would—it would take away any shred of motivation that doctors had to keep treating him.
“They said, ‘We know what you’re going to see. It’s going to be bad. And then you’re going to use it as some kind of ammunition to argue that we should withdraw care, and we’re not going to do it,’ ” Mayer says. He shrugged and told them he would do his best.
THE REST OF the story can speak for itself—literally. My team met Ragucci six years later in an ornate, borrowed conference room at the Rusk Institute in New York City, one of the premier rehab hospitals in the country. Outside, patients shamble down the cheerfully shabby hallways, but Mark Ragucci isn’t one of them. He was once, but today he’s a doctor in a beige suit and a crisp white physician’s coat. As a rehab specialist, he helps to restore the minds and bodies of patients facing long-term recoveries—anything from broken legs to paralyzing strokes. When he’s with a patient, he talks to them constantly, guiding them earnestly and gently, even those who supposedly can’t hear a thing.
Dr. Ragucci tells his story in a soft, almost apologetic voice, but I can see the same kind of stubbornness that his family showed the doctors at Columbia. By his own account, he was always that way. A wrestler in high school, Ragucci brought a wrestler’s intensity to his studies at the University of Illinois, where he earned his undergraduate degree and then finished his medical degree at the College of Osteopathic Medicine. He met his
wife Laura in medical school, where she was training to become a pediatrician. By the fall of 1997, they were engaged to be married and doing their respective internships at Cook County Hospital in Chicago. But then, about halfway through his training, Ragucci got a shock. He learned he had a congenital heart condition.
Ragucci has told the story often enough that he can recount it in sharp detail, as if giving a clinical presentation: “I had my first aortic dissection on January 2, 1998.” He says the date with a note of defiance, maybe a remnant of the frustration of the coma patient he was, struggling to hold a thought in his head, or maybe it’s just the preciseness of his medical training. In any case, the trouble started with a stabbing pain in his chest, as Ragucci was working out at the gym, fighting through a bout of insomnia between long hospital shifts.
Internship is the most demanding year that physicians will ever experience, and it was no different for Ragucci. Cook County, which in 2002 was renamed John H. Stroger, Jr. Hospital of Cook County, is iconic enough to have served as the model for television’s ER. Large public hospitals are perfect medical training grounds, because they bring in patients with every variety of serious illness and injury, and most of the patients are poor—they have no choice but to endure the probing of medical students and new doctors. Of course, the training is well supervised. Hospitals like Cook County are elite training grounds as well as public medical facilities, and many of its senior physicians are professors at Rush Medical College.
The stress was intense. Ragucci says he regularly worked more than ninety hours a week, often staying awake nearly two days straight. As if that weren’t hard enough, Ragucci had insomnia. The day his heart troubles began, he found himself sitting alone in his Oak Park apartment, after a twenty-four-hour shift followed by several hours of paperwork. “I was postcall, and I hadn’t slept in about thirty-two hours. [Laura] was on call at the hospital. I couldn’t sleep. So around three or four in the afternoon, I decided to go to the gym,” said Ragucci.
