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Alive inside: How do we reach 'vegetative' patients when tests show they're aware of everything – National Post



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

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

Jeff can’t move or speak. He has to be tube-fed through his stomach. He’s aware of what’s going on, Paul says, which is remarkable given doctors wrote Jeff off as being trapped in a vegetative state for 16 years. Only Jeff wasn’t vegetative. Roughly 20 per cent of people like Jeff who are assumed to be totally unconscious — no idea of who they are or where they are, unable to exhibit any “willful behaviour”  — are actually aware, lingering undetected somewhere in a state between life and nothingness.

New guidelines could 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 the catastrophically brain injured. A senseless attack sent Jeff into the unknowable world he now inhabits.

Jeffrey Tremblay and his father Paul in October 2018.

Courtesy of the Tremblay family

The assault happened after a night out at a bar with friends. Jeff, the kid with the heart of gold and a smile that could light up a room, was beaten into a coma in a fit of jealousy over a girl. His assailant, then 19, six-feet-two-inches tall and weighing 250 pounds, kicked skinny, wiry, 130-pound Jeff in the chest with enough force to propel a football 25 yards. Jeff’s heart went into arrhythmia, starving his brain of oxygen. When he arrived in emergency by ambulance, he had no pulse, no blood pressure, no “respiratory effort,” no movement. His pupils were fixed and dilated. The blow to his chest “at the critical time of the cardiac electrical cycle,” Saskatchewan Court of Queen’s Bench justice Robert Hrabinsky would write, led to “no effective circulation for many minutes.”

Jeff remained comatose for three weeks, until one day Paul, camped out around the clock in Jeff’s hospital room, looked up from his crossword puzzle and saw his son’s wide-open eyes and that great big smile, and thought, ‘Geez, he’s going to be fine.’”

He wasn’t. Jeff was awake, but doctors said his brain injury, his neurological loss, was so extensive, so diffuse he likely had no awareness whatsoever. “It’s tough to hear when a doctor says that. They want you to pull the plug,” Paul said. “I wasn’t prepared to do that.”

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

They want you to pull the plug

Sixteen years after his beating, Jeff was flown to London, where he was slid inside a functional magnetic resonance imaging scanner, or fMRI, which measures brain activity by detecting changes in blood oxygenation and flow, and shown a short Alfred Hitchcock movie — Bang! You’re Dead! Jeff’s brain fired off the same peaks and dips in electrical activity in the frontal and parietal regions of the brain at critical points of the movie that were uncannily identical to healthy volunteers shown the same eight-minute clip. Before then, Jeff had shown no “higher-order” signs of awareness, Owen and his team wrote in the journal PNAS in 2014, no communication in any form. The experiment suggested he was exhibiting executive processing, that he was able to engage in “complex thoughts about real-world events unfolding over time.”

Owen not only reached Jeff. The Western University scientist has used fMRI to help people once diagnosed “vegetative” follow commands, acknowledge where they are and with whom, and answer questions like, “are you in pain,” by decoding their brain activity.

Now, tests that can detect covert consciousness, not just expensive, bulky fMRI, but bedside EEG machines that use small discs on the scalp to measure brain activity, are moving a step closer to routine use. New guidelines from the American Academy of Neurology and other bodies recommend  that, where there is any ambiguity or “inconclusive” findings, brain imaging should be used to hunt for emerging signs of consciousness in the brain injured who have no recourse to speech or action — a “milestone”  development in the history of brain science, Owen and colleagues wrote in a paper, “Alive Inside,” in the journal Bioethics.

“The problem up until now has been that we develop these techniques, we put them out there, we tell people how to do them and the only patients that benefit are the people who make it into other research institutions,” Owen says. “It hasn’t been incorporated into guidelines for how one treats these patients. And that has now changed.”

Neuroscientist Adrian Owen.

Paul Mayne

Owen is pushing for the tests to be adopted even more widely, used not just months or years out from a brain injury, but at the front end in the first hours after a traumatic brain injury to help predict which patients might recover from a vegetative state, which ones might benefit from rehabilitation. Most decisions to remove life support — to pull the proverbial “plug” — occur within the first 72 hours after injury. If we can improve prognosis in that group, if we can better understand who might make some recovery, “we can perhaps save some of those lives,” Owen says.

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

Most remarkably, others are testing deep brain stimulation and other interventions to “re-awaken” or hasten awareness in people in minimally conscious states, even years out from their injury.

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

If someone can modulate their neural activity — communicate via signals from his or her brain — is that a sufficient, or even reliable proxy for speech? And if we find a way to communicate, what, then, do we ask them? Is there anything we can do to make you more comfortable? Is there anything you’d prefer to watch on TV? Do you wish to continue living?

“What is most tantalizing about this prospect is that it would allow a seriously brain-injured patient to express their current wishes, which may well have changed radically in the interval (sometimes decades) before they expressed any premorbid opinion,” Owen wrote this year in the journal Neuron.

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

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

Ashley Fraser/Postmedia

Sophisticated neuroimaging is already being used to involve some “covertly aware” patients in their daily care. But fMRI is expensive, bulky and nowhere near every 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 as common as smartphones, Owen wrote.

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

“How reliable is the signal? How do we make sure that it’s the intent of the person, that it hasn’t been hacked and that it is reproducible?” Illes wonders.

When it comes to communicating hunger or pain, it might matter less if the signal is noisy. “It’s not good to overmedicate someone but it’s much worse to under-medicate,” Illes says.

But could the signals be used in a courtroom as a form of testimony? To redirect an inheritance from the children who don’t visit anymore, to a nurse? Enable a person to request a medically assisted death?

Individuals who we thought were in a persistent vegetative state may not be and, in some cases, certainly are not

And what good is the information that a loved one appears to have some conscious processing, if there’s little available to help them? “I think that’s where I get stuck,” Illes says.

This much is true. “The technology has advanced to the point that we must attend to the fact that individuals who we thought were in a persistent vegetative state may not be and, in some cases, certainly are not. And those numbers are bigger than we ever thought,” she says.

Today, the standard way of checking for any “residual” or preserved awareness or cognitive function in brains damaged by a stroke, cardiac arrest or bash to the head are bedside scales that use response and command-following tasks — look this way or that, squeeze my hand, move a 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 can’t marshal the resources to, say, blink an eye, or move a foot on command. It’s not a muscular problem. They aren’t paralyzed. Rather, there’s a central nervous system problem, a disconnection that’s preventing them from executing any movement at all, Owen says. But their thoughts, their mental process could be intact.

These people do spontaneously move. They often grunt; they’ll open their eyes or move a hand. The problem is knowing whether that’s a conscious response or merely chance.

Except in circumstances such as complete brain death, relying on neurological exams at the beside is, in many cases, “hopelessly unreliable,” Owen says.

Images of “healthy” vs. “vegetative brains.”

Courtesy of Adrian Owen

Brain imaging takes behaviour out of the equation.

In a ground-breaking Science paper published in 2006, Owen and colleagues reported that an apparently vegetative woman showed distinct patterns of brain activity when asked, while lying inside a fMRI, to imagine herself playing tennis, or walking through the rooms of her house. The pattern of her brain activity was indistinguishable from what is seen in healthy volunteers. Owen believes she was entirely aware during the scanning procedure.

Next, working with Steven Laureys from the University of Liege, Owen showed that, of 54 patients in a vegetative or minimally conscious state, five 5 were able to “willfully modulate” their brain activity. One was able to answer yes or no to questions during functional MRI even though it remained impossible to establish any form of communication at the bedside. Then, in an experiment that made worldwide headlines, the team slid a man named Scott Routley inside an fMRI scanner and asked if he was in pain. The Sarnia, Ont. man had remained in what doctors were convinced was a vegetative state for 12 years after a police cruiser rushing to the scene of a crime slammed into his car in December 1999. Lying inside the scanner, Scott was told to imagine walking around his house if the answer was “yes” or playing tennis if the answer was “no.” “Do any parts of your body hurt right now,” Owen asked Routley. The answer was, no.

Images of “healthy” vs. “vegetative brains.”

Courtesy of Adrian Owen

Since then, Owen and his team have used imaging to ask patients if they prefer the temperature lower or higher, whether they still like watching hockey. “One of the sad truths is that they get exposed to an awful lot of whatever it is they used to like before they had a brain injury,” Owen says. “If you were a great lover of Celine Dion 20 years ago when you had your brain injury, maybe you don’t want to listen to that anymore. We can return a little autonomy to patients.”

Ironically, they’re often relatively healthy. They breathe on their own. Their hearts beat on their own. They’re not being kept alive, except, like Jeff Tremblay, they have to be fed and hydrated. There’s no “plug’ to pull. They can only die by withdrawing nutrition and hydration.

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

But Juan is truly the exception. “People often think these people go from being in a vegetative state to being back on the golf course. That almost never happens,’ Owen says.

We’ve got patients who we know are on the edge of being able to establish communication

However, he and others are starting to think about interventions that might accelerate their return to consciousness, even a normal life. “Twenty years ago, people would say to me, ‘isn’t there some sort of surgery you could do to fix these patients?

“Well, maybe, but we didn’t know where to start. You need the basic imaging and you need to understand what’s causing the problem before you can solve the problem of how to fix people. And I think we’re getting there. We’re just at the tipping point right now,” Owen says.

Researchers are testing different drug therapies, including anti-virals as well as a sleeping pill called zolpidem that famously and transiently roused 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 mummy.” More recently, in October, British scientists floated the idea of using the psychedelic psilocybin, the active substance in magic mushrooms, the idea being the hallucinogen might increase brain complexity and brain plasticity — the brain’s ability to rewire itself, and grow new neurons.

The biggest hope, however, may rest 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 minimally conscious state who can now communicate with his family, thanks to pulses of electric current to his brain.

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

“We’ve got patients who we know are on the edge of being able to establish communication, but we don’t really know what to do for them yet,” says Schiff, adding that it’s a population of patients that has been horribly neglected for years.

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

But how quickly should we be moving? And is there a risk of overestimating what fMRI mental imagery really means? The fact this area is so fraught with ethical challenges is precisely because we don’t know what it’s like to be in such a state, or whether a person’s mental processes are functioning at full capacity.  A signal is one thing. But what does it mean?

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

“My gut tells me that families might not know what to do with this information. What they will want to know is whether their loved one can hear their voices, feel their touch, or if he or she is experiencing pain.” However, the tests aren’t pitch perfect. Accuracy rates range from 60 to 80 per cent.

The Tremblay family in October 2018.

Courtesy of the Tremblay family

What’s more, to truly tap into a person’s state of mind requires a rich, two-way conversation, and the current technology, whether fMRI or less cumbersome, bedside EEG machines, prevents that, Peterson said. Such deeply profound decisions as “do you wish to stop being fed or hydrated” couldn’t be handled, legally or ethically, as if it were a “yes” or “no” game of 20 Questions.

A more likely scenario is how brain imaging might influence legal fights around decisions to withdraw life support.

Consider this example, Peterson says: A person’s advance directive states, “I don’t want to live if I’m in a vegetative state.” But then brain imaging detects covert consciousness. “One family member thinks that this clearly shows that the patient is not in a vegetative state and they shouldn’t withdraw care,” Peterson said. Other family members insist any detection of “covert” consciousness is irrelevant because their son or daughter or spouse could remain in that brain state for the rest of his or her life.

And it’s mostly young people who are most likely to end up with disorders of consciousness. Young people are resilient, Peterson says. They don’t die from the initial injury. Instead, they’re left in that grey zone between consciousness and unconsciousness.

And it’s impossible to know what their interior lives might be like. Some people might be relieved to learn their loved one can hear, can process speech, that they are fully aware of everything that is going on around them. Others will be horrified, and left with gut-wrenching questions about quality of life.

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

Still, the harms associated with undetected consciousness, whether it’s unnecessary pain or prematurely withdrawing care, is just too great not to starting moving the research into practice, Peterson said. “At the very least, it seems that clinicians have an ethical duty to discuss this option with families” in appropriate cases.

Before he took his son to Owen’s London lab, “everything was a dark hole,” Paul Tremblay says. “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’s listening or not. He smiles when he’s happy, grimaces when he’s sad, groans when he’s in pain. When he’s really tired, like most of us Jeff doesn’t listen very much. Paul takes his son to the movies once a week. He remains in touch with Owen’s lab.

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

In 1998, Jeff Tremblay’s attacker was convicted of aggravated assault.

He served eight months of a three-year prison sentence.

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Polio virus found in New York City wastewater, suggesting local transmission – CBC News



Health officials identified the virus that causes polio in New York City’s wastewater, suggesting local transmission of the virus, state authorities said on Friday, urging unvaccinated New Yorkers to get vaccinated.

“The NYC Heath Department and the New York State Department of Health have identified poliovirus in sewage in NYC, 
suggesting local transmission of the virus,” the city’s health department said in a statement on Friday.

“Polio can lead to paralysis and even death. We urge unvaccinated New Yorkers to get vaccinated now.”

The identification comes weeks after a case of polio in an adult was made public on July 21 in Rockland County, marking the nation’s first confirmed case in nearly 10 years.

Earlier this month, health officials said the virus was found in wastewater in the New York City suburb a month before health officials there announced the Rockland County case.

The U.S. Centers for Disease Control and Prevention (CDC) said at the time that it was not clear whether the virus was actively spreading in New York or elsewhere in the United States.

Evidence of virus in London

There is no cure for polio, which can cause irreversible paralysis in some cases, but it can be prevented by a vaccine made available in 1955.

New York officials have said they are opening vaccine clinics to help unvaccinated residents get their shots. 

Inactivated polio vaccine (IPV) is the only polio vaccine that has been given in the United States since 2000, according to the CDC. It is given by shot in the leg or arm, depending on the patient’s age.

On Wednesday, British health authorities announced they will offer a polio booster dose to children aged one to nine in London, after finding evidence the virus has been spreading in multiple regions of the capital. Britain’s Health Security Agency said polio virus samples were found in sewage water from eight boroughs of London, but there were no confirmed infections.

Polio is often asymptomatic and people can transmit the virus even when they do not appear sick. But it can produce 
mild, flu-like symptoms that can take as long as 30 days to appear, officials said.

It can strike at any age but the majority of those affected are children aged three and younger. 

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Monkeypox: gov’t has no plans to call public health emergency – CTV News




Canada’s chief public health officer Dr. Theresa Tam says there are no plans at the moment to declare monkeypox a public health emergency.

While the World Health Organization and the United States have both recently done so, Tam said there is little benefit to declaring a federal public health emergency in Canada, because of the structure of regional and provincial public health authorities.

She said a federal emergency declaration would involve the Emergencies Act — which hasn’t even been invoked to address the nearly two-and-a-half-year COVID-19 pandemic in Canada. Tam said thus far, Canada has already been able to mobilize vaccines, therapeutics, and funding to tackle monkeypox.

Tam also said local and provincial authorities have more flexibility, and have been able to respond to the rise in monkeypox cases. Local and provincial authorities could also decide to declare the virus a public health emergency at those levels, as many did with COVID-19.

“To date our discussions have focused on testing, working with community organizations to raise awareness on ways to limit spread the virus, and deployment of the Imvamune vaccine and therapeutics,” Tam said. “As the global monkeypox outbreak continues to be a serious concern, focusing efforts on the impacted communities in Canada and worldwide, including with vaccinations, we have an opportunity to contain the spread.”

To day, approximately 99,000 doses of Imvamune have been deployed to the provinces and territories, and more than 50,000 people have been vaccinated, Tam said.

Canada’s Deputy Chief Public Health Officer Dr. Howard Njoo said the approach continues to be vaccinating higher risk communities first, and there are currently enough doses to do so.

Tam says there have been approximately 31,000 cases of monkeypox reported globally, with 1,059 in Canada, mostly in Ontario.

While cases of the virus first started popping up in Quebec, Ontario has since surpassed it in its number of infections.

To date, there have been 28 hospitalizations — two in intensive care — from monkeypox in Canada, and no deaths. Tam said it’s too soon to tell whether the number of cases has plateaued in Canada.

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COVID-19 vaccine side-effects less likely in pregnant people, says study – CP24



Pregnant people experienced lower rates of side-effects from the COVID-19 vaccine than their counterparts who weren’t pregnant, a new Canadian study suggests.

The Canadian National Vaccine Safety Network collected data from 191,360 vaccinated women aged 15 to 49 between December 2020 and November 2021. The researchers asked participants to report “significant health events” that were serious enough to make them miss school or work, seek medical attention or disrupt their routines.

Of 5,597 pregnant participants, four per cent reported a significant health event within seven days of receiving their first dose of an mRNA vaccine, and 7.3 per cent of 3,108 pregnant respondents said they had side-effects from their second shots.

Among those who weren’t pregnant, 6.3 per cent of 174,765 respondents reported a significant health event after dose one, and 11.3 per cent of 10,254 participants said they felt sick after dose two.

“One of the things that was really striking was that the rates of these events happening in pregnant people was lower than the rates happening in non-pregnant people at the same age,” said Manish Sadarangani, lead author of the paper published in the Lancet Infectious Diseases journal on Thursday. “It’s very reassuring around the safety of COVID vaccines and pregnancy.”

Studies on other vaccines have found that pregnant people experience side-effects at roughly the same rate as those who aren’t pregnant or even slightly higher, said Sadarangani, an investigator at BC Children’s Hospital.

More research is needed to understand why this might not be the case for mRNA COVID-19 vaccines, Sadarangani said, but he suspects the physical transformation of pregnancy could be a factor.

“There’s a lot of hormonal and immunological and physiological changes happening during pregnancy, and some of them we understand, some of them we don’t,” he said. “I’m presuming that some of these changes are leading to these lower rates.”

Thursday’s study found that rates of serious health events after getting a COVID-19 vaccine, such as hospitalization, were similarly rare across all groups.

There was no significant difference in the rates of miscarriage or stillbirth among participants who were vaccinated and those who weren’t.

Researchers are conducting a followup survey to see if participants experienced any side-effects six months after their COVID-19 shots, Sadarangani said.

Pregnant people are at increased risk of COVID-19 complications, he said, so it’s all the more important that researchers continue to study how vaccination affects them and their babies.

“All of the data we have really highlight the safety of all of these vaccines in pregnancy,” said Sadarangani. “Ultimately, this is the best way to protect this group of people in our population.”

This report by The Canadian Press was first published Aug. 12, 2022.

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