The People Lost Between Consciousness and Death

This article appears in VICE Magazine’s Borders Issue. The edition is a global exploration of both physical and invisible borders and examines who is affected by these lines and why we’ve imbued them with so much power. Click HERE to subscribe to the print edition.

Juan Daniel Torres Perez is a fidgeter. Sitting in his suburban home in Milton, Ontario, he adjusts himself in his wheelchair, clasps and unclasps the chair’s waist-strap buckle, and fusses with the buttons on his plaid shirt.

These movements may seem ordinary, but just six years ago, when he was 19, Perez lay in a hospital bed, unable to move or talk. Doctors told his parents that his brain was irreparably damaged after it had been starved of oxygen for hours. His body remained, but the son they knew was gone. He was almost completely unresponsive to the world around him. And yet he was conscious the whole time. “I could hear my mom and dad from the very beginning,” he said when I visited him this past May.

When doctors tried to assess if he was conscious, they would come to his bedside and ask him to squeeze their hand. “I was trying as hard as I could, but I just couldn’t,” Perez said.

Perez was declared to be in a vegetative state—a liminal place between life and death where traumatic brain injury or a lack of oxygen renders a person mostly immobile and conceals consciousness.

Perez’s level of recovery is rare, and it was a long, arduous process. It took years of rehab, both mental and physical, to get where he is today: He has re-enrolled in college, he does his homework, rides the bus, composes electronic music. But the rest of his case—the incorrect prognosis from doctors, the fact that he was aware and yet deemed to be unconscious—is not that unusual.

There are likely thousands of people around the world who have been incorrectly diagnosed as vegetative—considered nothing more than the husks of their former selves, with no internal thoughts—when in fact they are present in some capacity, stuck inside bodies that don’t cooperate, with no way to communicate.

A handful of researchers over the past two decades have examined these patients, concluding that about 40 percent of people in vegetative states are misdiagnosed. In many cases, it’s because these patients have not received the kinds of brain imaging and bedside diagnostic tests that could accurately tell if they are conscious, even though these tests have been shown to help predict awareness and guide treatment. Also chilling is that decisions are made in intensive care units about withdrawal of care in the immediate aftermath of brain injuries on the basis of this incomplete data and monitoring.

When neurologists told Perez’s parents that he had no hope of getting better, Perez was listening too. He knew his nurses’ names, he could feel the effects of the medications that were being administered, and he was constantly thinking about trying to move his body.

“I knew that I was myself,” he said. “And that something really bad had happened.”

On July 19, 2013, Perez had dinner with his family, walked his dogs, washed the dishes, and went to a friend’s house. He returned home around midnight.

“I came home after the party,” Perez said. “And then I choked on my own vomit while I was sleeping.”

Around five or six in the morning, his mother, Margarita Perez, heard a noise from his room and went to check on him. “He was already totally purple,” she told me. A puddle of blood and bodily fluids surrounded his body. Juan’s sister called for an ambulance. At the hospital, he was moved to the ICU. At first, he was in a coma, but after a couple of weeks, he opened his eyes.

Vegetative states are distinct from brain death and coma. People in comas are neither awake nor aware, but in vegetative states a person seems awake, though how aware they are is not clear. The term “minimally conscious” captures how there can seem to be flickers of consciousness—an occasional, errant movement of the hand, a cough—but a person can’t respond consistently if you ask them to wiggle a finger.

“They are a bit zombie-like, which gives you this weird sense of presence,” said Adrian Owen, a neuroscientist at Western University who has been studying people in vegetative states for over 20 years. He wrote a book about many of his patients, including Perez, called Into the Gray Zone: A Neuroscientist Explores the Border Between Life and Death.

The exact numbers are unknown, but a recent review estimated there are around 4,200 people diagnosed as being in a vegetative state in the United States per year. Estimates for the more ambiguous conditions, like minimally conscious states, are much fuzzier, since there’s no official diagnostic code and the patients can be hard to track. There could be anywhere from 112,000 to 280,000 people in minimally conscious states currently in the U.S.

In 2006, Owen and his team put a woman who was diagnosed as vegetative into an fMRI scanner, which can help doctors infer brain activity by recording blood flow, and asked her to imagine playing tennis. In his book, Owen describes the moment as being like “magic.”

There are likely thousands of people around the world who have been incorrectly diagnosed as vegetative—considered nothing more than the husks of their former selves, with no internal thoughts—when in fact they are present in some capacity, stuck inside bodies that don’t cooperate, with no way to communicate.

The parts of her brain associated with imagining body movements lit up, and stopped when they asked her to stop thinking about playing tennis. When they asked her to imagine walking around her house, they saw brain activity for navigating places. Her brain looked just like a healthy person’s. “She wasn’t vegetative at all,” he wrote. “She was responding to us, doing everything we asked. I was ecstatic.”

Since that startling discovery, he’s made it his mission to use this strategy to probe the minds of hundreds of vegetative patients, reporting that about 17 percent of the patients he saw could produce these kinds of brain responses in an fMRI. A review by another group of scientists of 1,041 patients with disorders of consciousness, which can include people anywhere on the spectrum from vegetative to minimally conscious, found similar statistics: about 15 percent were able to modify their brain activity, suggesting awareness. In June, researchers using EEG also saw covert brain activity in 15 percent of a group of unresponsive patients in Columbia University’s neurological intensive care unit. The patients who had this hidden brain activity were more than three times as likely to reach partial independence after rehabilitation.

But these findings weren’t yet translating into clinical care. Margarita claims the doctors treating Juan at the time told her there was no point in continuing life support. “From the very beginning, the neurologist was saying there pretty much was no case here,” she said.

If a person gets a severe brain injury in the U.S., they will enter a robust network of certified trauma centers whose job is to save lives and bring people like Perez back from the precipice of death. But what then?

When Perez left the ICU he wasn’t dead, but was he alive? Was he conscious? Would he recover? Our ability to answer these questions has not kept pace with our ability to prevent people from dying, said Joseph Giacino, a neuropsychologist at Spaulding Rehabilitation Hospital and Massachusetts General Hospital in Boston who treats and studies disorders of consciousness.

A study from 2017 showed that in order to improve diagnostic accuracy, clinicians should perform at least five examinations using a diagnostic procedure called the Coma Recovery Scale, which includes tasks like following objects with the eyes and responding to commands. But a review of people in vegetative states found that only 8 out of nearly 40 studies included repeated testing for awareness using various brain imaging techniques, and only one did any kind of systematic assessment over multiple days. Only about half the studies they reviewed used fMRI or electroencephalogram (EEG), which measures electrical activity in the brain. Ideally, Giacino said, doctors would use the Coma Recovery Scale and imaging when bedside findings are ambiguous.

When that’s done, patients’ awareness is more likely to be found. In a small prospective study at Massachusetts General Hospital in 2017, researchers assessed 16 cases of acute severe traumatic brain injury patients that came to the ICU. By using fMRI and EEG, they were able to find signs of consciousness that bedside examinations had missed. In eight patients who were classified as vegetative and minimally conscious, four could produce fMRI responses that appeared to follow commands. In a sample of 292 patients given a diagnosis of vegetative state, 42 were able to show responsiveness when their brain activity was recorded, suggesting they were conscious.

“You’re highly dependent on the providers, and unfortunately, providers are not as knowledgeable as they need to be with regard to severe brain injury,” Giacino said.

Despite this lack of knowledge, doctors are making decisions about care—how aggressive it should be or if life support should be withdrawn. One study in Canada looked at six Level 1 trauma centers and found that most of the deaths in the ICU for traumatic brain injury patients were a result of withdrawal of care, or stopping treatment. About half of those deaths happened within the first 72 hours of injury.

“Anybody who feels confident early after severe brain injury in what the course of recovery is going to be is probably not someone to take seriously, because we’re not at a point where anyone has a right to have a high level of confidence in either direction,” Giacino said.

For those who don’t die, only about one in five people who have moderate to severe brain injuries, like trauma, make it to an in-patient brain injury rehabilitation hospital. The rest go to nursing facilities, or they go home—where most caretakers aren’t specialized in brain injury and are less likely to formally monitor for consciousness.

Margarita Perez didn’t give up on Juan. She said she saw signs of him, even when the doctors didn’t believe her, so she took video of him constantly, trying to capture his movements. Around four weeks after he entered the hospital, she wheeled him outside to get some sun. She joked about how pale his skin had gotten, calling him Snow White. Perez let out a laugh.

“That was really the point when we said, ‘Yes, he’s back,’” she told me. “He’s really conscious.”

Over the coming months, Perez regained his ability to move a finger, then to mouth words. In over two decades, Owen told me he hasn’t seen another case like Perez’s. He had made it out of the “gray zone,” which Owen conceptualizes as the place people in vegetative and minimally conscious states go. Consciousness isn’t black or white, but a gradient.

“People can make it sound like there’s this line that divides consciousness, and it’s not really that clear,” Giacino said. “The evidence is that people can sort of gravitate above and then float down below that line, back and forth for a while before they stay above the line. There are some people who never quite get completely above, or stay completely below, and they’re the ones that are really a challenge for the family and anybody else who’s involved.”

I met one such patient the day after I met Perez. Leonard (whose last name is withheld because of the sensitive nature of the information shared) was in his early sixties and was upright in a wheelchair wearing a salmon collared shirt and gray sweatpants at a care facility in Burlington, Ontario. His salt-and-pepper hair was thinning out at the top and his eyes were open. His hands were curled at the wrist, in a stiff position from lack of use. The feeding tube attached to his stomach was concealed by his clothing. At first glance he looked as if he could be idly daydreaming.

“Leonard,” his wife, Winifred, said into his ear. “Tell Shayla if you can see her. You have to move your eyes and your lips. Remember? We decided you were going to talk? She’s standing with you. OK? Yes? Maybe?”

Nothing happened for a few minutes. Then, Leonard did begin to move—his lips pursed and his jaw opened and closed, like he was chewing on something sticky. The movement evolved into a cough and his face contorted. Winifred told me she thinks Leonard tries to communicate with these coughs, since it’s one of the only ways he can move or make a noise.

“Show her how you give her a thumbs-up. Give her a thumbs-up, come on.” Winifred said. I looked down at his thumb. Was it just me, or was there a nearly imperceptible flicker of the thumb? The moment came and went in a flash. “Thank you,” Winifred said, patting Leonard’s shoulder. “I saw it. It’s OK. And she saw it too. That was good, Leonard. I know you’re trying.”

It was May 26, 2010, when Winifred woke up in the middle of the night to a noise and turned the bedside light on. She peered at her husband, who looked like he was having a nightmare. She shook him, but he didn’t wake up. Then he stopped breathing. She cried out for her two children, who were teenagers at the time, and they called 911. Leonard had had a heart attack, and was induced into a coma at the hospital. After he was transferred to a cardiac hospital, Winifred was told that because of the lack of oxygen to his brain, he had suffered severe brain damage. After 36 hours, a doctor told her that his brain was dead and he should be taken off life support.

“The doctor was trying to impress upon me the importance of letting him go, and telling me that he wouldn’t live,” she said. Leonard was transferred back to the local hospital, still with a feeding tube, but without any equipment for breathing. But his predicted end did not come. About a month later, his eyes opened.

In 2015, Owen examined Leonard using fMRI and EEG scans. He was not able to detect any brain activity. “That’s not to say that I absolutely believe Leonard is unaware,” Owen said. “I still don’t know. But we have no evidence at all that he is. He’s a very interesting case.”

Owen said it’s possible that Leonard does have some awareness, and because Winifred knows him so well, she can see what others can’t. I wonder if, because she wants to believe that Leonard is part of the roughly 20 percent of people who are misdiagnosed, she’s ascribing meaning to random movements. “I think she accepts that it isn’t clear,” Owen told me. “She still believes that Leonard’s in there and trying to express himself and trying to have opinions. But I think she accepts that it’s more or less invisible to anybody else other than her.”

When Margarita took Juan to see Owen in September of 2013, Owen put him in an fMRI scanner and asked him to imagine playing tennis. At the time, Perez’s results were inconclusive too. Owen said that it reveals how the methods we have now are still imperfect.

There are a variety of possible reasons why Perez’s brain didn’t respond. Maybe he was tired, maybe that part of his brain hadn’t recovered yet, or maybe he just didn’t want to. Maybe the tests we’re using work best at a specific time, or for a specific kind of injury.

Another hard truth is that even when clinicians do find hidden signs of consciousness, it doesn’t always mean that a person will recover. Many of the patients in whom Owen did see brain activity weren’t able to tell their own stories later on.

To cut through some of those mysteries, at Weill Cornell Medicine, the neurologist Nicholas Schiff is using an arsenal of imaging techniques to try to develop a reliable protocol that can tell him when someone is aware, and who will have a good recovery and who won’t. His team uses EEG to record electrical brain activity around the clock, and pairs that with other imaging techniques, like fMRI and positron emission tomography. They watch the brain during sleep and wake cycles, during prompts to think about playing sports, listening to music, and hearing family members’ voices. They are trying to understand how brain metabolism and biology change as a brain recovers.

Among the patients Schiff has seen over the past 10 years, about 23 percent showed signs of being aware—they were able to follow high-level commands using their thoughts. “The understanding of people who are doing this research is very clear,” he said: “We’re missing tons of people.”

Owen’s latest approach will use functional near-infrared spectroscopy. It measures how much near-infrared light is absorbed by blood vessels, which changes depending on how much oxygen is present. (Blood oxygen levels are a common proxy for brain activity.) He still asks people about tennis, and now also shows a 1961 episode of Alfred Hitchcock Presents. A film can provoke many responses in the brain: It stimulates the audio and visual parts, along with triggering complex emotions, facial recognition, memory, and more. How close a vegetative person’s overall brain activity matches a healthy person’s during a movie could clue us in to how much of them is still here.

Despite their slight differences in strategy, Schiff, Owen, and Giacino said what’s important going forward is that clinicians don’t just write people off after a few days without more rigorous checking. In busy and hectic ICUs that are short on time, staff, and resources, there isn’t the space or money to do lengthy observations and expensive scanning. “Many doctors don’t look,” Schiff said. “It would be completely outrageous not to do an echocardiogram on somebody with a cardiac problem. But you may never see an EEG on any of these people, even if an EEG might predict that they were conscious at a time when somebody makes a determinative decision.”

Schiff told me he hopes things are changing. In August 2018, the American Academy of Neurology, in collaboration with other organizations, put out the first joint guidelines on disorders of consciousness that included mention of minimally conscious states and discussed issues around evaluating for high-level cognition. It will likely take time to filter into everyday medical practice, he thinks, but it at least provides a framework for doctors.

Still, the researchers know that determining if someone is conscious isn’t the end goal. It’s only the very first step in doing right by these patients. Communication is what will allow families and doctors to ask what patients want, rather than debate what they want. This could extend to serious issues, like if they want to stay alive or if they are in pain, but also to more basic quality of life questions.

In a 2013 study, Owen reported a case of a man who had been diagnosed as vegetative but showed signs of awareness in his fMRI scan. Using his brain activity as a means to indicate yes or no, they were able to ask if he still wanted his television tuned in to hockey games. (He did.)

Schiff said that’s what’s driving a lot of his thinking now. “Just showing that they exist and are inside there is really not helping them,” he said. “It’s actually made it much worse, because the fact is we found lots of these people. What are we going to do about it? I’m burdened by that.”

Perez told me that he wouldn’t have wanted to live his life in a vegetative state. “It was like hell, because you were fully aware of everything that was happening around you, but you couldn’t do anything or react,” he said. Also: “It was boring as hell, to be honest.”

Winifred and Leonard didn’t talk about advanced directives before his heart attack. She didn’t have clear instructions about what he wanted. She said that it hurts when people say things to her like, “Why are you putting him through this?” She hasn’t taken any extreme measures to prolong Leonard’s life besides continuing basic care. And he’s had his share of health problems. About a year after he was in the hospital, he had pneumonia. The doctors said his lungs would likely collapse. Winifred prepared for the worst. But Leonard survived.

When people go into vegetative states, they don’t go there alone. The families who wait with them, who are unsure, who are told by doctors to give up, who look for signs of awareness—they are in a kind of limbo, too.

At a certain point, Winifred got tired of waiting. Last March, she took Leonard to Vancouver for vacation.“I was like, ‘You know what? We need to get out of here.’ And so we did it,” she said.

When people go into vegetative states, they don’t go there alone. The families who wait with them, who are unsure, who are told by doctors to give up, who look for signs of awareness—they are in a kind of limbo, too.

The trip motivated her toward her ultimate goal: to bring Leonard home to India. They were supposed to buy their plane tickets the evening of his heart attack, but had put it off until the next morning. Then their lives had changed overnight.

“He has fought through, and he’s come through it,” she said. “How do you explain this? All I’ve done is I’ve just been there to support him. That’s the way I see it. I have not done anything that forces him to live. Knowing him, he’s the most passionate about his family. The fact that he can see us all with him, I think, is what’s making him fight. Who am I to stop anything if he’s trying to fight to be with us?”

If you want more border stories, check out this additional package which explores how the borders that divide and surround Europe affect the lives of the people living near them.