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“The ominous events in the early hours of August 12, 1997 led to a tragedy in Lloydminster, Saskatchewan …” – by a ruling of the Queen’s Bench of the Saskatchewan Bench, issued in 1998.

There was a small group playing at the annual Dr. Cooke Care Center Christmas party this year and tables loaded with short curls and popcorn and Christmas cookies. On one side of the room sat Jeffrey Tremblay and his father, Paul. Jeff has lived in the Lloydminster facility since he was 19 years old. He turns 41 this week.

Jeff cannot move or speak. It should be fed through the stomach. He is aware of what is happening, says Paul, which is remarkable after doctors wrote Jeff as trapped in a vegetative state for 16 years. Jeff alone was not a vegetarian. Roughly 20 percent of people like Jeff who are supposedly completely unaware – no idea who they are or where they are, unable to display any “deliberate behavior” – are in fact aware, remaining undiscovered somewhere in a state between life and nothing.

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New guidelines can help in the search to find them.

It’s not clear how much Jeff knows about the role he’s playing in what some are calling a revolution in the treatment of catastrophic brain damage. A senseless attack sent Jeffrey into the unknown world he now inhabits.

Jeffrey Tremblay and his father Paul in October 2018.

Courtesy of the Tremblay family

The attack happened after a night out at a bar with friends. Jeff, the golden-hearted kid and a smile that could light up a room, was beaten in a coma in a fit of jealousy towards a girl. His attacker, then 19, six-foot-two-inches tall and weighing 250 pounds, hit the weak, 130-pound Jabel in the chest with enough strength to push a 25-yard football. Jeff’s heart went into arrhythmia, starving his oxygen brain. When he arrived in the emergency room by ambulance, he had no pulse, no blood pressure, no “breathing effort” and no movement. His pupils were fixed and dilated. Knocking on his chest “at the critical time of the cardiac electrical cycle,” Saskatchewan Queen’s Bench Salon Court Justice Robert Hrabinsky would write, leading to “no effective circulation for many minutes.

Jeff remained comatose for three weeks, until one day Paul camped around the clock in Jeff’s hospital room, stared at his criss-crossed riddle and saw his son’s wide eyes and that big big smile, and thought, ‘Geez, he’s going to be fine.’ “

He was not. Jeff was awake, but doctors said his brain damage, his neurological loss, was so extensive, so widespread, that he had no awareness of anything. “It’s hard to hear when a doctor says this. They want you to pull the plug,” Paul said. “I wasn’t prepared to do it.”

Paul didn’t know much about the brain at the time, but one day he found a story about a neuroscientist named Adrian Owen, a researcher of British descent who had been using brain scans for years to get inside the minds of people considered all but extinct, unable to speak or move or signal to the outside world, “I can hear you. I’m here”

They want you to pull the plug

Sixteen years after his beating, Jeff flew to London, where he slipped inside a functional magnetic resonance scanner, or fMRI, which measures brain activity by detecting changes in oxygenation and blood flow, and showed a short film Alfred Hitchcock – Bang! You are dead! Jeff’s brain ceased from the same peaks and dives into electrical activity in the frontal and parietal regions of the brain at critical points in the film that were not identically identical to healthy volunteers, showed the same eight minute clip. Earlier, Jeff had shown no “higher order” awareness signs, Owen and his team wrote in PNAS magazine in 2014, without any communication in any form. The experiment suggested that he was exhibiting an executive processing, that he was able to engage in “complex thinking about real-world events unfolding over time.”

Owen not only reached Jeff. The Western University scientist has used fMRI to help people when diagnosed with “vegetative” follow orders, acknowledge where they are and with whom, and answer questions like, “do you have pain,” deciphering their activity brain.

Now, tests that can reveal secretive awareness, not only expensive, large, fMRI, but EEG machines in bed that use small disks on the scalp to measure brain activity, are going one step closer to using routine. New guidance from the American Academy of Neurology and other organs recommends that, when there is any uncertainty or “inconsistent” finding, brain images should be used to hunt for new signs of awareness in the injured brain that have no recourse to it. speech or action – a “milestone” in the history of brain science, Owen and colleagues wrote in an article, “Alive Inside,” in the journal Bioethics.

“The problem so far has been that we develop these techniques, we put them there, we tell people how to do them, and the only patients who benefit are the people who do them at other research institutions,” says Owen. “It’s not included in the guidelines on how one treats these patients. And that has changed now.”

Neuroscientist Adrian Owen.

Paul Mayne

Owen is pushing for tests to be adopted even more widely, used not only months or years out of a brain injury, but in the early hours after a traumatic brain injury to help predict which patients may to recover from a vegetative condition, which may benefit from rehabilitation. Most decisions to remove life support – to retrieve the proverbial “plug” – occur within the first 72 hours after injury. If we can improve the prognosis in that group, if we can better understand who can make a cure, “maybe we can save some of those lives,” Owen says.

“Maybe a different decision is right for some of those patients.”

Oddly, others are testing deep brain stimulation and other interventions to “wake” or boost consciousness in people in a minimally conscious state, even for years after their injury.

But the rapidly evolving field is also creating serious ethical challenges to how we think about consciousness; about the false hope and about existential dangers to make people more aware of an existence, many would consider a living nightmare.

If one can modulate their neural activity – to communicate through signals from his / her brain – is this representative enough, or even reliable, to speak? And if we find a way to communicate, what, then, to ask them? Is there anything we can do to make you more comfortable? Is there anything you prefer to watch on TV? Do you want to continue living?

“What is most appealing about this perspective is that it would allow a severely brain-damaged patient to express their current desires, which may have changed radically in the interval (sometimes decades) before expressing any premorbid thoughts,” wrote Owen this year in Neuron magazine.

“Ultimately, the morally challenging question of whether their lives are a life ‘worth living’ is one that can be answered by the patient using fMRI,” he said.

A PET-fMRI machine at the Brain Imaging Center in Ottawa.

Ashley Fraser / Postmedia

Sophisticated neoimaging is already being used to include some “conscious” patients in their daily care. But fMRI is expensive, expensive, and nowhere near any hospital has one. However, 20 years from now, brain-computer interfaces that use electrical signals from the brain to say, manipulate a computer or move a robotic arm could be just as common as smartphones, Owen wrote.

But this is where things get nicer, says Dr. Judy Illes, Chair of Research in Canada in Neuroethics at the University of British Columbia.

“How reliable is the signal? How do we make sure the person’s intention is that he is not hacked and that he is reproducible?” I wonder.

When it comes to communicating hunger or pain, it may matter less if the signal is loud. “It’s not good to overdo it, but it’s much worse to be under medication,” Illes says.

But can the courtroom signals be used as a form of evidence? Redirect a legacy of children who no longer visit to a nurse? Is a person allowed to seek a medically assisted death?

The individuals we thought were in constant vegetative state may not be and, in some cases, certainly are not

And what is the useful information that a loved one seems to have in some conscious processing, if there is little available to help them? “I think it’s stuck here,” Illes says.

This is very true. “Technology has advanced to the point that we have to take into account the fact that individuals we thought were in constant vegetative state may not be and, in some cases, probably aren’t. And those numbers are bigger than we have ever thought, ”she says.

Today, the standard way of checking for any “residual” conscious awareness or function in the brain damaged by a stroke, cardiac arrest, or head injury are bed scales that use responses and subsequent command tasks – they look that way or that, shake your hand, move one foot, follow the tennis ball with your eyes.

However, people diagnosed as being in a vegetative state, or the much larger group known as the minimally conscious, simply cannot march the resources to say, blow an eye or move their feet with command. It is not a muscular problem. They are not paralyzed. Rather, there is a central problem of the nervous system, a detachment that is preventing them from performing any movement at all, Owen says. But their thoughts, their mental process can be intact.

These people move spontaneously. They often complain; they will open their eyes or move one hand. The problem is to know if this is a conscious response or just a chance.

Unless under circumstances such as complete brain death, relying on nearby neurological examinations, in many cases, is “hopelessly hopeless,” Owen says.

“Healthy” images versus “vegetative brain”.

Courtesy of Adrian Owen

Brain imaging takes behavior out of the equation.

In a scientific paper published in 2006, Owen and colleagues reported that a seemingly vegetative woman showed distinct patterns of brain activity when asked, while lying inside an fMRI, to imagine herself playing tennis, or walking through the rooms of her home. The pattern of her brain activity was distinct from that seen in healthy volunteers. Owen believes she was fully aware during the scanning procedure.

Next, working with Steven Laureys from the University of Liege, Owen showed that, of the 54 patients in a vegetative or minimally conscious state, five in 5 were able to “intentionally modulate” their brain activity. Someone was able to answer yes or no questions during functional MRI although it remained impossible to establish any form of communication in the bed. Then, in an experiment that made headlines around the world, the team slipped a man named Scott Routley inside an fMRI scanner and asked if he had pain. Sarnia, Ont. the man remained in what doctors were convinced was a vegetative state for 12 years after a police raid rushed to the scene of a car crash in his car in December 1999. Lying inside the scanner, Scott was told that to imagine walking his house if the answer was “yes” or playing tennis if the answer was “no”. “Make any part of your body hurt now,” Owen Routley asked. The answer was no.

“Healthy” images versus “vegetative brain”.

Courtesy of Adrian Owen

Since then, Owen and his team have used images to ask patients if they prefer the lower or higher temperature, whether or not they still like watching hockey. “One of the sad truths is that they are exposed to a great deal of whatever they like before they have a brain injury,” Owen says. “If you were a great lover of Celine Dion 20 years ago when you had a brain injury, you probably don’t want to hear it anymore. We can give back some autonomy to patients.”

Ironically, they are often relatively healthy. They breathe on their own. Their hearts beat on their own. They are not being kept alive, except, like Jeff Tremblay, they need to be nourished and hydrated. There is no “outlet” to pull. They can only die by withdrawing food and hydration.

The better their responses to the fMRI scanner, the more likely they are to recover, Owen believes. And there have been some spectacular recovery cases, including Juan Torres, to whom Owen devotes an entire chapter of his book, In The Gray Zone. A Toronto-area man suffered a catastrophic brain injury when he was 19 years old. Today, six years out, he’s re-enrolled in school. “He’s intellectually back to where he was before,” Owen says.

But Juan is really the exception. “People often think that these people go from being vegetative to returning to a golf course. This almost never happens, ‘says Owen.

We have patients that we know are on the cutting edge of the ability to create communication

However, he and others have begun to think of interventions that can accelerate their return to consciousness, even a normal life. “Twenty years ago, people would tell me, is there any kind of surgery you can do to fix these patients?

“Well, maybe, but we didn’t know where to start. You need the basic image and you need to understand what is causing the problem before solving the problem of how to fix people. And I think we’re getting there. Now we’re at the point of the pickup point, ”Owen says.

Researchers are testing various drug therapies, including antivirals, as well as a sleeping pill called zolpidem that famously and temporarily teased Louis Viljoen, of Johannesburg, from a vegetative state in 2006. Twenty minutes after his first dose, he opened his eyes, looked at his mother and said, “Hello mom.” Recently, in October, British scientists gave up the idea of ​​using psychedelic psychilocybin, the active substance in magic fungi, with the idea that hallucinogen can increase brain complexity and brain plasticity – the brain’s ability to rebuild itself and grow neurons. new.

The greatest hope, however, may lie with deep brain stimulation, or DBS. Dr. Nicholas Schiff is a neuroscientist at Weill Cornell Medicine in New York City. Schiff was also the lead author of a breakthrough study published in Nature in 2007 involving a 38-year-old man who had spent more than five years in a minimal conscious state now able to communicate with his family, thanks to the impulse. of electrical current in his brain.

By stimulating the central thalamus, which transmits motor and sensory signals to the cerebral cortex, the part of the brain involved in consciousness, Schiff’s team was able to help man name objects, make hand gestures and eat without a feeding tube – suggests DBS “can promote significant functional recovery from severe traumatic brain injury” even years after the injury occurred.

“We have patients that we know are on the cutting edge of being able to create communication, but we really don’t know what to do for them,” Schiff says, adding that it’s a population of patients that has been neglected. terribly for years.

“Just because we identify awareness and awareness, it’s not enough. It’s terrible to know we can make these measurements, identify awareness and not do what needs to be done, which is building a medical infrastructure for support these people. “

But how fast should we move? And is there a risk of overestimating what fMRI mental images really mean? The fact that this area is very fraught with ethical challenges is precisely because we do not know what it wants to be in such a state, or whether one’s mental processes are functioning at full capacity. A signal is one thing. But what does it mean?

“I have always imagined a clinician going into a room and saying, ‘I have great news! John is aware! We know this because he is actively modulating his brain activity,'” he wrote in an email. Andrew Peterson, an adjunct professor at George Mason University who works with Owen’s lab.

“My gut tells me that families may not know what to do with this information. What they will want to know is if their loved one can hear their voices, feel their touch, or if he is experiencing pain. “However, the tests are not perfect. The accuracy rate ranges from 60 to 80 percent.

The Tremblay Family in October 2018.

Courtesy of the Tremblay family

Moreover, to truly get into a person’s state of mind requires rich, two-way conversation, and current technology, whether fMRI or less cumbersome, EEG machines near the bed, prevents this, Peterson said. Such profound decisions as “want to stop eating or hydrating” cannot be handled, legally or ethically, as if it were a “yes” or “no” game of 20 questions.

A more likely scenario is how the brain image can influence legal struggles over decisions to withdraw life support.

Look at this example, Peterson says: A person’s advanced directives, “I don’t want to live if I’m in a vegetative state.” But then images of the brain reveal the hidden consciousness. “One family member thinks this clearly shows that the patient is not in a vegetative state and care should not be withdrawn,” Peterson said. Other family members insist that any disclosure of “secret” consciousness is not important because the boy or girl or their spouse may remain in that brain state for the rest of his or her life.

And it is mainly young people who are likely to end up with mental disorders. Young people are resilient, says Peterson. They do not die from initial injury. Rather, they are left in that gray area between consciousness and the unconscious.

And it is impossible to know how their inner life can be. Some people may be relieved to learn that their loved one can hear, can process speech, that they are fully aware of everything that is going on around them. Others will be terrified and left with worrying questions about the quality of life.

My gut tells me that families may not know what to do with this information

However, the damage associated with undiscovered consciousness, whether unnecessary pain or premature withdrawal of care, is simply too great not to start the study movement in practice, Peterson said. “At the very least, it seems that clinicians have an ethical duty to discuss this opportunity with families” on appropriate occasions.

Before taking his son to the London lab in Owen, “everything was a dark hole,” says Paul Tremblay. “Everything was negative, negative, negative.”

“But the more you read about it, it’s just not true.”

Jeff can’t communicate. But Paul reads his eyes to see if he is listening. He smiles when happy, grimaces when sad, groans when hurt. When he’s really tired, like most of us Jeff doesn’t hear much. Paul takes his son to the movies once a week. He remains in touch with Owen’s lab.

“It may not help Jeff in the long run,” Paul said. “But I think Jeff is helping with the research.”

In 1998, Jeff Tremblay striker was convicted of aggravated assault.

He served eight months in prison with three years in prison.

• Email: skirkey@postmedia.com | Twitter: sharon_kirkey

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