Light in the dark: What if vegetative patients are actually conscious?

From 2014: Hitchcock film proved that despite a ‘vegetative’ diagnosis, Jeff Tremblay’s brain is awake. What does that mean for end-of-life care?

Jeff Tremblay, 35, left, watches previews with, left to right, his dad Paul Tremblay, his nephew Parker Tremblay, 7, and his brother Jason Tremblay at May Cinema 6 in Lloydminster, Alberta on Saturday, September 13, 2014. (Photograph by Amber Bracken)

Jeff Tremblay, 35, left, watches previews with, left to right, his dad Paul Tremblay, his nephew Parker Tremblay, 7, and his brother Jason Tremblay at May Cinema 6 in Lloydminster, Alberta on Saturday, September 13, 2014. (Photograph by Amber Bracken)

Every weekend for over a decade, Paul Tremblay has taken his son Jeff, 35, to the movies. At the cinema in Lloydminster, Alta., they’ll see comedies, action movies, thrillers; sometimes they’ll go to an animated film, maybe the latest from Pixar, with Jeff’s brother Jason, Jason’s wife, and their two young sons. “Jeff likes comedies,” Tremblay says, “almost any kind.”

All this time, Tremblay’s been operating partly on faith. While he’s convinced that Jeff occasionally responds to what’s happening up on the screen—“He’s got a real belly laugh,” he says—he can’t be sure how much his son actually takes in. When Jeff was 18, he suffered a devastating brain injury after an assault: A kick to the chest sent him into cardiac arrest, temporarily depriving his brain of oxygen. Since then, Jeff’s been unable to speak, move purposefully, or follow basic commands and cues; he requires round-the-clock care. Even so, week after week, Jeff’s dad keeps taking him to the movies.

In 2012, Paul Tremblay was researching brain injury online and came across an item about Adrian Owen, a British neuroscientist based at Western University in London, Ont. Owen’s work has gained worldwide attention for detecting consciousness in some vegetative patients, a group long thought to be completely unaware of themselves and their surroundings. Using high-tech brain scans, Owen has concluded that a number of these patients are conscious, even though it can’t be detected through standard clinical testing. Tremblay wrote an email; a few months later, he and Jeff flew to London for tests. What the Tremblays didn’t realize then was that Owen’s lab was pioneering a new way to detect consciousness in these patients—one that, coincidentally, involves watching a movie.

In the 2014 study, published in the journal PNAS, Owen’s team describes showing healthy volunteers and two brain-injured patients, including Jeff (who is not identified in the study), a shortened version of a 1961 episode of Alfred Hitchcock Presents called “Bang! You’re Dead.” Each participant watched the movie inside a functional magnetic resonance imaging (fMRI) machine, which measures brain activity. The healthy volunteers’ brain activity was synchronized to the movie, the study says, suggesting they experienced what they saw in a similar way. Even more remarkable, the same patterns were seen in Jeff. (The other brain-injured patient showed no such response.) In other words, Jeff’s brain activity suggested he was engaging with the movie as its plot unfolded, following its twists and turns—he was “consciously aware,” as the paper says, despite his injury. Paul Tremblay took it as good news, although he wasn’t surprised. “It was confirmation for me,” he says. “I’d always believed it.”

To Owen, this represents a new way of identifying patients who have no way to express that they are, on some level, aware. It has implications that stretch beyond the movie theatre, or fMRI machine. If a patient like Jeff, who’s been unresponsive since 1997, can follow a movie, then how do we know he isn’t taking in conversations around him, even discussions about treatment—including if, and when, to end it? It’s a disturbing suggestion, one Owen acknowledges will make many people uncomfortable. “If a patient is able to follow the plot of a movie,” he says, “there is no reason to believe they are not following the plot of their own lives.”

The Tremblay family, left to right, Stacy, Jason, Paul, Parker (behind the chair), Jeff and Carson, 9, head into May Cinema 6 in Lloydminster, Alberta. (Amber Bracken for Maclean's Magazine)

The Tremblay family, left to right, Stacy, Jason, Paul, Parker (behind the chair), Jeff and Carson, 9, head into May Cinema 6 in Lloydminster, Alberta. (Photograph by Amber Bracken)

Vegetative patients were long believed to lack any consciousness at all. Unlike patients in a coma, they wake up and fall asleep, and retain basic reflexes; yet their eyes rove around the room, fixating on nothing. They’re unable to communicate or follow basic commands, such as squeezing a doctor’s hand to demonstrate awareness. (According to the PNAS paper, both brain-injured patients’ prior diagnoses wavered between “vegetative” and “minimally conscious.” While such terms are medically meaningful, to anyone other than a doctor or specialist, it would be hard to tell the difference between the two states.)

Patients can live like this for years. Some families make the wrenching decision to end life support, or else find themselves pitched in legal battles over care, as happened in the cases of Terri Schiavo, in Florida, and Hassan Rasouli, in Toronto. After an infection left Rasouli brain-damaged, doctors wanted to end treatment; his family refused. Ultimately, the Supreme Court ruled with the family. It was a question Tremblay also had to face. Shortly after Jeff’s injury, doctors suggested “letting him go.” At Jeff’s bedside day and night, he decided to let his son “fight,” as he says; eventually, Jeff came off the ventilator. Today, he lives in a long-term care facility just three blocks from Tremblay’s house. When Tremblay isn’t out of town for work, he sees Jeff every day.

It was in 2006 that Owen, then at the University of Cambridge, launched his first real challenge to the notion that all vegetative patients are unconscious. In a deceptively simple experiment, he placed a 23-year-old vegetative patient in an fMRI scanner, and asked her to imagine either playing tennis or moving around her home. She succeeded, activating two different parts of her brain, one after another, just like healthy volunteers. Although this patient couldn’t lift her right or left hand on command, she was clearly following Owen’s instructions.

Owen’s group started testing more patients, including with electroencephalography (EEG), which is cheap and portable compared to an fMRI machine, although it doesn’t peer as deeply into the brain. Shortly after he was recruited to Western with a prestigious Canada Excellence Research Chair, in 2010, Owen used fMRI to scan a Canadian man named Scott Routley, who’d been vegetative since a 1999 car crash. Routley was able to answer “yes” and “no” questions by purposefully activating certain parts of his brain, as instructed. Owen asked Routley whether he was in pain—a first for any vegetative patient. The answer Routley gave was no.

Owen and his team have shown that almost one in five vegetative patients retains some awareness, and can follow commands by fluctuating brain activity, as Routley did. Still, the “playing tennis” technique is far from perfect, he acknowledges: It could be missing patients who aren’t able to picture themselves darting around a tennis court, or simply feel tired or confused at the time of the scan. Watching a movie doesn’t require following instructions. As Owen says, “It’s easy and effortless.” Hitchcock films could be the ideal vehicle. “He’s been called the master of suspense,” says Lorina Naci, a postdoctoral fellow in Owen’s lab, and lead author of this study. “He draws the viewers in.”

Just as the audience in a theatre will jump in unison at a scary scene, past studies have found that movies can drive synchronized brain activity among viewers. According to Naci, this is the first study to look specifically at the brain’s frontal and parietal lobes (important for higher thought and executive processing), and their role in processing a movie. The film used in the study, an eight-minute black-and-white short, seems to work particularly well. In Hitchcock’s “Bang! You’re Dead,” a young boy finds his uncle’s revolver. He loads it with a few bullets and, dressed as a cowboy, tucks it into his holster. As he points the gun in his mother’s face, she assumes it’s a toy; Hitchcock’s audience knows otherwise and, throughout the episode, we can never be sure whether the gun is about to go off.

“Hitchcock uses certain techniques that are extremely important to executive processing. He uses a lot of foreshadowing,” Owen explains. To feel terror as the child waves the gun, the viewer must remember it’s a real gun—and it’s loaded. As this paper notes, understanding the movie’s plot requires viewers to draw on their “stored knowledge of the world” (in this case, that guns are dangerous and kill people), and to imagine what might happen, should the gun fire.

Even so, the brain responds automatically to certain stimuli; before being sure that participants really were following the film, any automatic brain response had to be ruled out. So Naci and Owen showed them a scrambled version of the same movie, with the frames out of order and no discernible plot. As they watched, brain activity blipped on in the auditory and visual cortex, which respond to sights and sounds, she says; but in the frontal and parietal regions, “activity was completely wiped out.” (In the other brain-injured patient, no activity was seen in the frontal and parietal lobes at any point.)

Owen and his team continue to refine their methods. Since Jeff and Paul Tremblay’s visit in 2012, they’ve shown more patients movies inside the scanner, including comedies such as Charlie Chaplin’s Modern Times and The Lion’s Cage, which seem to have a similar effect on brain activity, Naci says.

But even movie-watching might not detect every patient with some consciousness: Roving eye movements are a hallmark of the vegetative state. “They must be watching [the movie] in their peripheral vision,” Owen speculates. “By definition, a vegetative patient cannot fixate.” His team is testing still other ways to measure awareness, maybe through audio files that tell gripping stories. Compared to the “imagine playing tennis” method, or even watching a movie, an auditory test for consciousness would be appealingly simple: An MP3 file could be exported to other labs and hospitals around the world, with instructions to put a brain-injured patient inside a scanner and press play.

An undated photo of Jeff from the Tremblay family's collection of photos. (Photographed by Topher Seguin)

An undated photo of Jeff from the Tremblay family’s collection of photos. (Paul Tremblay)

Despite mounting evidence that brain scans can find awareness—signs that even the best doctor could otherwise miss­—they’re not standard of care: fMRI machines are large, expensive and difficult to access. “The argument for not putting these patients into a brain scanner is getting extremely weak,” says Owen, who believes the issue could eventually be forced through the courts. In fact, he sees it happening already. At least once a month, he says, he’s approached about cases involving the care of brain-injured patients. One involved Vancouver engineer Kenny Ng, who suffered severe brain damage in a car crash. Seven years later, in 2012, Ng’s wife met with doctors to discuss removing his feeding and fluid tubes, but his siblings intervened. They provided an affidavit on Owen’s work (Owen didn’t examine Ng directly), noting that “minimally conscious” patients like Kenny Ng could sometimes show signs of awareness in a brain scanner.

In this case, the judge sided with Kenny Ng’s wife, finding that her decision was based on the medical evidence of her husband’s doctors. While the judge praised Owen’s research as “remarkable,” he noted that, whatever the outcome of a brain scan, Ng’s current medical condition could not be improved. “[A]s a man of science, Kenny would not believe in miracles,” the judge writes, paraphrasing Ng’s wife. “He would be realistic and rational about scientific developments. He would not wish to live a life of complete dependency.”

It’s true that brain scans aren’t therapeutic and won’t help a patient recover. But they do provide a powerful argument for why people like Jeff Tremblay can benefit from stimulation and activity. Jeff’s weekly pilgrimage to the movies with his dad “may have kept him from deteriorating,” Owen says.

When Paul Tremblay brought Jeff to London for testing, his other son, Jason, was wary. “One thing you learn,” Jason says, “is not to get your hopes up too much.” He can’t forget the excruciating period after Jeff was injured, when a well-meaning nurse suggested Jeff would be “back to normal” in a few days. “She was trying to lift my spirits, but I believed it at the time,” Jason says. “I was literally counting the hours, and it didn’t happen. That’s always stuck with me.”

Still, the discovery that Jeff can follow a movie—can possibly, in at least some way, follow the plot of his own life—has been important to Jason. “When you’re 18 and 21, you don’t say things like, ‘I love you,’ ” Jason says. Now, he tells Jeff how he feels all the time, “but that’s one thing I always think: Does he know how much I care about him?” Hearing the news “reaffirms all those talks I’ve had with him in private,” Jason says. “To know he heard me—it does feel good.”

Looking for more?

Get the Best of Maclean's sent straight to your inbox. Sign up for news, commentary and analysis.