They called him a dead man.
Last month New York-Presbyterian Hospital issued a death certificate for 68-year-old Yechezkel Nakar after he suffered a stroke that rendered him unconscious and unresponsive.
Trouble is Nakar wasn’t dead. His heart was still beating, and he remained on life support at Maimonides Medical Center while his family filed a lawsuit asking the court to withdraw his death certificate so they could be reimbursed for his continuing care. He survived for another 21 days after doctors had officially declared him deceased.
Nakar’s story not only raises the role of morality in medical care (his family objected to removing him from life support on religious grounds), but also highlights medicine’s limited understanding about this borderland between the dead and the living — an area the British-born neuroscientist Adrian Owen calls “the gray zone.”
Dr. Owen has spent the last 20 years using brain scans to try to communicate with people written off as brain-dead — as unreachable as heads of broccoli. And to the shock of the neurological community he has been successful. His studies estimate that upwards of 15 to 20 percent of patients in persistent vegetative states or “unresponsive wakefulness” may actually be conscious but locked in their bodies and unable to communicate. Some, he’s found, have “intact minds adrift deep within damaged bodies and brains.”
This has serious implications for the estimated 15,000 to 40,000 people on life support in the United States — a number that has nearly doubled in the last decade as medical advancements keep people alive longer. Some are warehoused in sub-acute units, derisively called “vent farms,” where hosts of people live out their last days, months or even years. If Owen’s data is correct, more than 7,000 of these people could be conscious — a realization that sounds more like a “Twin Peaks” plotline than real life.
In his book “Into the Gray Zone: A Neuroscientist Explores the Boundary between Life and Death” (S&S), out now, the Canada-based Dr. Owen introduces readers to patients who helped bring him closer to breaking through this gray zone. Here are four astounding cases that led to some of his most exciting breakthroughs.
KATE
Before Dr. Owen began his investigation, doctors believed that once you were vegetative for several months, there was zero chance of recovery. This led to some weird-but-true moments like the Venezuelan man Carlos Camejo, who lost consciousness 10 years earlier in a car accident but awoke during his own autopsy.
In 1997, Dr. Owen met a patient named Kate Bainbridge, who had developed encephalomyelitis, a brain and spinal-cord tissue inflammation. With this diseases, some recover, others die — and another group, including Kate, enter into a persistent vegetative state. Dr. Owen wanted to know: Are people like Kate completely lost?
He decided to track her visual processing system to see if her brain responded to images. Dr. Owen collected pictures of Kate’s favorite people and showed her the images while scanning her brain using Positron Emission Tomography (PET), which works by monitoring blood flow marked with radioactive tracers. When healthy people see familiar faces, blood flow tends to increase in a part of the brain called the fusiform face area. Would this happen with Kate?
To his surprise, whenever Kate was shown family photos, her visual cortex lit up but then “returned to relative inactivity when a cloth covered her face . . . Her brain responded just as if she was awake and aware, just as if she was a perfectly healthy person,” Dr. Owen writes.
Luckily, after six months in a vegetative state, Kate recovered well enough to share her side of the story. Though she didn’t recall seeing the faces she was shown, she did remember being conscious and being desperately thirsty and trying to call out. She said she was in so much psychic pain that she even tried to kill herself by holding her breath — a common occurrence among those locked in their bodies, Dr. Owen writes.
“Part of Kate was still there,” he writes, “and perhaps that’s what was reflected in our early scans.”
After Dr. Owen published Kate’s story in the medical journal The Lancet, responses ranged from excitement to incredulity. Some questioned his research methods and others suggested that Dr. Owen was fooled by an automatic response. Nevertheless, the idea of “the gray zone” was born.
KEVIN
Now that Dr. Owen knew the visual cortex could be activated by familiar images in some people in vegetative states, he wanted to know: Would speech cause a similar change?
In 2003, he tested Kevin, a 53-year-old bus driver who was unresponsive four months after suffering a massive stroke that devastated his brain stem and thalamus. Dr. Owen scanned Kevin while playing sentences — some clear and some layered in static noise. If Kevin understood the sentences, Dr. Owen expected to see a greater increase of activity in the temporal lobe.
Again, like the healthy controls, Kevin’s brain lit up in the exactly same way. “Surely this was key evidence that Kevin’s brain wasn’t just hearing speech — his brain understood it!” writes Dr. Owen. “There could be little doubt that Kevin’s brain was processing meaning.”
Dr. Owen and colleagues scanned Kevin again using an fMRI scanner that measures activity through oxygen in the blood (the more brain activity in one area, the more blood rushes to it with its stock of oxygen).
This time, Dr. Owen read Kevin ambiguous sentences containing words with multiple meanings like, “the shell was fired toward the tank” (shell, fired, and tank all have multiple meanings). Research shows sentences like these require more brain activity in the left temporal lobe and the lower part of both frontal lobes than clearer sentences like, “He wrote a poem.”
With this test, Kevin’s brain lit up in all the right spots, providing evidence that a nonresponsive person could glean meaning from spoken language.
SCOTT
Armed with the knowledge that some vegetative patients could comprehend language, Dr. Owen opened the lines of communication further. Now he had to test his tennis theory out on healthy and vegetative patients. Years later he felt prepared to open up a dialogue.
His “a-ha” moment came while watching Wimbledon in June 2006.
“What about tennis?” he suggested to his colleague, neuroscientist Melanie Boly. Although the thought of getting nonresponsive patients to pretend to play tennis seemed silly, it actually made neurological sense. Thinking of playing the sport — one that is particularly easy to imagine — activates a very specific part of the brain called the premotor cortex.
Now he had to test it out on healthy and vegetative patients until years later he felt prepared to open up a dialogue.
Scott was T-boned by a police cruiser in 1999 and spent the next 12 years in a minimally responsive vegetative state, though Scott’s family remained adamant he was there and making efforts to communicate. Dr. Owen explained the study to Scott and told him to picture playing tennis: bouncing the ball, swinging the racket and making contact with the ball. As hoped, Scott’s premotor cortex lit up on cue.
“Scott, are you in any pain? Do any of your body parts hurt right now? Please imagine playing tennis if the answer is no,” Dr. Owen continued.
Scott’s premotor cortex activated. He had given a “no” answer. He was communicating.
Dr. Owen followed up with other questions. Scott knew it was 2012, not 1999 (the year of his accident), which indicated he had new memories, a key component in full consciousness.
MARTIN
The most famous case of a person coming back from a perceived vegetative state is Martin Pistorius, a South African who chronicled the 12 years he spent “locked in” to his body in his harrowing memoir “Ghost Boy,” published in 2013. When Martin was 12 years old in 1988, he fell ill with a mysterious degenerative illness that slowly robbed him of his ability to walk or talk. Eighteen months later doctors believed that he had the intellect of a 3-month-old baby.
But Martin remembers waking up four years later completely cognizant — and entirely trapped in his body. “For so many years, I was like a ghost. I could hear and see everything, but it was like I wasn’t there. I was invisible,” he told NBC in 2015.
It all started in 2001, when one of Martin’s therapists, Virna Van Der Walt, began to suspect her patient was engaging with the world in a deeper way than he could communicate. She could see it, she would later say, in the sparkle in his eye. She convinced his parents to get him neurologically tested, which confirmed her suspicions.
Martin’s inert body, it turned out, was hiding a brilliant mind. He went through years of rehab, which strengthened both body and brain, and began communicating with the outside world with the help of a computer program. He regained the use of his hands, attended college, works as a website designer and married “the love of his life” in 2009.
Although his is a rare case, Pistorius is a symbol of hope for many who have unresponsive loved ones. Some patients, like Yechezkel Nakar who finally passed away on June 21, will die. But others will continue to live — and even if we can’t yet pluck them out of the gray zone, we can improve their quality of life.
Dr. Owen imagines a future — not too far from now — where we are able to implant sensors in the brains of these patients, allowing them to communicate and re-engage with the outside world.
Dr. Owen’s collaborator, Belgian neurologist Steven Laureys, confirmed that if we can reach them, these people often reveal they are living meaningful — even happy — lives. In one study of 91 people with “locked-in syndrome” like Pistorius, 72 percent reported that they were happy and only 7 percent expressed a wish for euthanasia.
“What began as a scientific journey more than 20 years ago, a quest to unlock the mysteries of the human brain, evolved over time into a different kind of journey altogether,” writes Dr. Owen, “a quest to pull people out of the void, to ferry them back from the gray zone, so they can once again take their place among us in the land of the living.”