Nearly dying was a spark for Duane Dupre. He left the stressful work of managing supermarkets to focus on spending more time
with his four grandchildren and doing good works. Along with ten of his pals, Dupre started a foundation called Ten Friends
Cooking, which caters big events and gives all the proceeds to charity. He knows what he saw while he was dead and says he
knows it was a miracle, even if he isn’t quite sure what happened to him: “People say you must have been dreaming. You must
have just imagined it. And maybe they’re right. We’ll see.”
No event is so terribly well adapted to inspire the supremeness of bodily and of mental distress, as is burial before death…
. What I have now to tell is of my own actual knowledge—of my own positive and personal experience.
—Edgar Allan Poe, “The Premature Burial”
D
R. MARK RAGUCCI
was so far gone, his doctors thought he’d never come back. For nearly two months after a surgery that went badly awry, Ragucci
was completely unresponsive, dead to the world in his hospital bed. “They said I had irreparable brain damage from having
no oxygen to my brain,” he recalls. “They said I showed no response to stimuli. That means they could shine a light in my
eyes, poke me with a needle, whatever, it wouldn’t register. I was a vegetable.”
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For two months he lay in a darkened room while his mother, father, and wife kept vigil, all waiting for a miracle. The head
of the unit, a physician with an elite medical education and more than a decade of experience in one of the country’s top
hospitals, told them to forget it. So did two other doctors with the combined weight of half a century of medical experience.
The doctors in the crisp white coats, the medical literature on which they relied, all gave his family the same simple message:
pull the plug.
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Up to this point, we’ve been talking about death as stoppage of the heart. That’s been the meaning of death almost as long
as humans have been around. But in an American hospital today, that’s not what doctors mean by death: They’re talking about
whether the brain can function in a meaningful way, about whether consciousness is irretrievably lost. They’re talking about
brain death. And here, the line between life and death is shifting just as much, if not more, as it is for the doctors who
try and keep our hearts beating and the blood pumping through our veins.
You won’t find a better example than Ragucci. His doctors might have given up, but he can tell the story today because one
doctor didn’t—and because something inside Ragucci was able to bounce back, something that gave him the strength to cheat
death: brain death.
The concept of brain death first gained popularity among a small group of surgeons in the 1950s. They were transplant surgeons,
intent on taking body parts from a patient with no hope of survival and giving them to one who might be saved. Through the
1950s and most of the 1960s, these surgeons made tremendous technical advances toward the removal and implantation of kidneys,
hearts, and livers in animals. But except for the use of a single kidney—which could be removed without killing the donor—they
were forbidden from trying human transplants. No hospital would allow a body part to be removed from an organ donor until
the patient’s heart stopped beating on its own. Any doctor who defied these guidelines might be prosecuted for murder. Of
course, once the heart stops, tissues throughout the body begin to die, so the restriction against taking organs from a living
body meant that surgeons were limited to using organs damaged by the lack of oxygen. In leading hospitals, surgeons would
hover around a dying man or woman, anxiously watching the monitor that would tell them when his or her heart stopped, so the
transplant operation could begin. Not surprisingly, survival rates in early transplant cases were poor.
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.
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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.
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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.
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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.”
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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.
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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.
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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.
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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.
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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 how 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.
O
N 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.
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