Friday, February 22, 2019

Ontario man in "vegetative state" woke up.

Alex Schadenberg
Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

People who are diagnosed as being in a “vegetative state” (PVS) are often warehoused in institutions. After a period of time a decision is often made to withdraw all treatment including the withdrawal of fluids and food to dehydrate the person to death.

A few years ago I attended a European conference where presentations were made by physicians who operate medical treatment facilities to awaken patients through stimulation, known as awakening centers. The treatment stimulates the body to activate the brain and help it to heal.

The story of Juan Torres, from Oakville Ontario, is significant. Torres awakened from a PVS state and improved beyond expectations. 

Juan Torres with his parents.
An article by Kate Lunau published by MacLean's Magazine (December 31, 2015) tells the story:
“I don’t really know what happened,” Juan Torres, a 21-year-old from the Toronto suburb of Oakville, tells Maclean’s. “But, one day, I just woke up.” 

That Torres is speaking at all is astounding. Early one morning in July 2013, Torres, then 19, was discovered by his mother, face-down and unconscious on his bedroom floor, after choking on vomit in the night. He was left profoundly brain-damaged, and his doctors diagnosed him as vegetative: unable to speak, to eat, to deliberately control his movements, to follow basic commands. Vegetative patients retain their reflexes, and might grind their teeth or grimace; their eyes rove about the room but won’t fix on anything. They don’t demonstrate a glimmer of consciousness and can live that way for years, spending their days in hospitals, long-term-care facilities, or at home, unless families decide to end life support. The doctors who treated Torres didn’t think he’d be any different; they expected his status to be permanent, his mother says.
But Torres life changed:
Today—contrary to expectations—Torres is back home with his family. He gets around in a wheelchair; supported by his parents, he can take halting steps forward. In September, he started the general arts and science program at Oakville’s Sheridan College.

If all this wasn’t unexpected enough, there’s something else about Juan Torres that has left neuroscientists stunned. Not only did he recover, but he claims to remember what happened while he was clinically vegetative—and he has memories to prove it. In those hazy months before anyone knew he was aware, Torres says he remembers a doctor telling him to squeeze his hand, even though he couldn’t. He remembers being asked to “follow a tennis ball” with his eyes. Scientists have tested his memories, asking Torres to identify a set of faces and objects he encountered while technically “vegetative.” And he was able to do it. “I felt sad, because I couldn’t communicate with my family,” Torres says. He felt scared and “emasculated” at his inability to respond to the doctor’s cues and commands. For Torres, it was a nightmare. “I felt trapped in my own body,” he says. “I couldn’t talk. I couldn’t react.” It was like being half-asleep and frozen, he says, unable to respond.
Adrian Owen (center)
Adrian Owen, who researches communicating with people diagnosed as PVS considers Torres case as “mind-blowing”

“His case is mind-blowing,” says Adrian Owen, a British neuroscientist at Western University who has been investigating one of the most mysterious, least understood phenomena: human consciousness. It’s often said that the brain is the most complex structure in the known universe. Torres’s case shows us how much we’ve yet to understand: the fact that he was creating memories suggests he wasn’t unconscious at all, despite his doctors’ best diagnosis. “It tells us there really was a person there,” Owen says, “and that person was experiencing the world.”

Vegetative patients have not been a high priority for researchers, some of whom doubtless see them as a “lost cause.” It’s hard even to say how many people live this way, or to compare their outcomes. The vegetative state can arise from all sorts of mishaps that lead to brain injury, from a car accident or stroke, to drowning, choking, a sports or military accident. There doesn’t seem to be much consensus on their treatment, either. ...
Owen believes that Torres case is unique, but the question is, how many people are misdiagnosed?
All neuroscientists, including Owen, agree that many—probably most—of the patients diagnosed as “vegetative” truly are so, with no hope of recovery. Certainly, the vast majority will never recover like Torres: there’s no doubt that this young man is an extraordinary case. “I’ve seen hundreds of patients over almost 20 years and he is completely unique,” Owen says. But the issue is, are we misdiagnosing a subset of patients as “vegetative,” and leaving these people to languish? It’s a chilling suggestion.
Torres tells Lunau: “Don’t count me out of the fight just because I’m in bed.” Lunau explains what happened to Torres:
Torres came home around midnight, chatted with his dad and ate some salad—his father didn’t notice anything unusual in his behaviour—before going to bed. Early the next morning, Perez awoke to strange noises coming from his room. At first she thought it was the dogs. She discovered her son lying on the floor in a puddle, in respiratory arrest. How long he’d gone without oxygen is impossible to say. She performed CPR, and her daughter, Laura, called 911. “At the hospital, they said, ‘Hold his hand, because he’s leaving us,’ ” Perez recalls. Her voice falters as she’s overcome by the memory. “They said he was going to die that day.”

The period that followed was devastating, a blur. Both Perez and her husband, Jorge Javier Torres, took several months off work, staying by their son’s hospital bed day and night. ...As the shock wore off, Perez and her husband started researching how to help Torres. “You cannot leave a boy that young,” Perez says. “Not alive, not dead; just lying there. Wouldn’t you try anything?”

They discovered hyperbaric oxygen therapy, in which patients breathe pure oxygen inside a pressurized chamber. HBOT, as it’s informally called, is offered at hospitals and clinics across Canada; it’s approved to treat a range of conditions, such as decompression sickness, air or gas embolism, and carbon monoxide poisoning, but not brain injury. ...

Juan Torres’s parents had no idea whether it would benefit him, but they were desperate to try anything. So they signed him out of the hospital in Oakville on a series of day passes—itself a tricky endeavour, given all the equipment supporting him, including a feeding tube, IV and catheter—and took him by special medical transport to regular HBOT sessions at a private clinic in nearby Mississauga, Ont. ...

Hyperbaric oxygen was just part of their regimen. Torres’s parents assembled a collection of items they’d use to stimulate him daily: flashcards with “colours, words, pictures of the dogs, pictures of family members,” Perez says. She’d rub sandpaper and feathers along his toes. She’d bring in coffee beans to waft under his nose. “I remember that,” Torres says, as his mother tells the story, “the smells, like lemon, mint and hot sauce.” (They used Tabasco.) Once in a while, family members were sure they saw him respond. “The doctors would say, ‘Yes, but it’s just a reflex,’ ” Perez recalls. “It was difficult to keep hope, because there were so many days when you don’t see any signs.”

About a month into their new reality, Juan Torres’s parents took him to a little garden outside the hospital to get some fresh air. He was in a portable hospital bed, unable to sit up. “We put him in the nice sun, and started to massage him,” Perez says. “I was talking about how white he was getting.” His fair complexion has always been a running joke with his family members, who call him Snow White. “We are all kind of tan, and he’s the only one with white skin,” Perez says. Torres was “unconscious,” she continues, but he started laughing along at the joke.

They immediately reported this to doctors, who, once again, deemed it a reflex. “I couldn’t believe it. We were talking, it wasn’t random,” says Perez. Even so, vegetative patients do show automatic responses that can confuse and alarm loved ones. It’s not unusual for family members to interpret these as signs of consciousness, when it could just be wishful thinking. “I started to wonder if I was seeing something that wasn’t there,” Perez says.
Researchers, working with Adrian Owen's became involved with Torres.
In late August, Laura Gonzalez-Lara, research coordinator with Adrian Owen’s lab at Western, travelled to Oakville to examine Juan Torres. She’d heard about the young man from a hospital worker involved in his treatment. “He came out completely vegetative,” she says. “There were no signs of awareness, beyond some reflexive behaviour. It was actually pretty low,” she adds, “even for our vegetative-state patients.” A month later, he was brought to London, Ont., for further assessment, including with a functional magnetic resonance imaging (fMRI) machine, which measures and maps brain activity. Although the fMRI tests were inconclusive (Torres moved too much in the scanner), “we assessed him [behaviourally] several times that week,” says Damian Cruse, a former research scientist in Owen’s lab who is now a lecturer in psychology at the University of Birmingham. “Every time, he fulfilled the criteria for vegetative state.”
The family didn't give up.
Not long after, on Thanksgiving, Torres’s family brought him home for a day visit, his first since leaving in an ambulance three months before. As his parents carefully wheeled him into the backyard, the family dogs, Yogi and Cindy, came bounding out to greet him. His father, somehow intuiting on behalf of his son, grabbed a dog whistle and stuck it between Torres’s lips. And Torres did what no one had thought possible: He started to blow.

Not long after, the team at Western phoned Perez. “As we were explaining the results,” Gonzalez-Lara says, telling Perez that tests indicated her son was clinically vegetative, “she told us, well, he just started talking.” Soon after Thanksgiving, Torres had begun mouthing words, then whispering. He gradually regained his voice. That November, he was discharged from hospital and sent to a rehabilitation centre.
Torres went back to London Ontario where they began to test his memory of being PVS.
In May 2014, six months after Torres started speaking, Owen and his team brought him back to the lab. “There was a fair amount of disbelief,” says Cruse. “Everyone agreed it would be a good idea to test his memory, but is he really going to remember the faces of people he met six months ago?”

They showed Torres photos of people he’d met on his initial visit, when he was still clinically vegetative, mixed in with photos of others who looked similar, but whom he’d never encountered. They did the same with objects, including two hand mirrors, one framed in red, the other in white. Torres correctly identified all five faces, and three of the four objects. (Findings will be published in a future scientific paper.) Seeing a photo of Laura Gonzalez-Lara, the research coordinator whom he’d met while vegetative, he said: “That’s Laura.” About another person, he said, “I recognize her nose.” And in still another example, he described the voice of a person he’d met as “deep and monotonous,” a description so bang-on, it made the others laugh.

Recovery among vegetative patients is so rare, But Owen's research does conclude that some people who are diagnosed as “vegetative” are not. The article states:

The more patients he scans, the more he discovers about the wide variety who are labelled “vegetative”—and the possibility that some aren’t vegetative at all. Shortly after being recruited to Western in 2010 (Owen holds the Canada Excellence Research Chair in cognitive neuroscience and imaging), he met Scott Routley, who had been in a car accident 12 years before that left him in a vegetative state. In a brain scanner, Routley could answer “yes” and “no” by activating parts of his brain on command. Owen asked whether he was in pain, and Routley answered no, a first for any vegetative patient.

Juan Torres is another first. Whenever Owen discusses his work, he hears the same question. “Someone will put up his hand and say, ‘Do you have a patient who recovered and can tell you [what it was like]?’ ” Owen’s team has determined that one in five patients who appears to be vegetative retains some level of consciousness, which can’t be detected through standard clinical assessments. The number could go up, he argues, as detection methods improve—but even with a growing body of research, it remains controversial to claim consciousness among these patients. Some worry it could give families false hope, or cause feelings of guilt among those who do decide it’s best to end life support.
The article suggests that Torres's recovery is impossible to explain, except for the fact that the body stimulation that is done at awakening centers in Europe have a fairly successful recovery rate. I am not a scientist or a doctor, but it appears clear that the stimulation that the family did was likely what led to Torres's recovery. The article states:
Juan Torres’s recovery is impossible to explain, although his youth and physical strength must have helped. Medical reports on Torres’ rehabilitation, which Perez provided to Maclean’s, suggest that healthy parts of his brain may have been recruited to work on behalf of areas that were permanently damaged. Owen admits this is possible, but “his recovery was fairly swift for that to have been the case,” he says. “There’s not any clear neuroscientific explanation I can give.”

Torres says he feels pride at his recovery. “I learned a lot, actually,” he says. “I used to get mad. Now I’m more patient.” But a sense of loss hangs over him. A focused and determined young man—his recovery is no less a testament to his own resolve, and his family’s—his frustration can at times be palpable. His life has swerved down a path he never could have predicted. But he’s back in school. He’s playing sports, including wheelchair rugby. (He enjoys “the competition,” he smirks. “The violence.”) Torres spends spare hours making electronic music on a laptop at home. He dreams of becoming a platinum-selling record producer.

Every day, even now, Perez tells her son how grateful she is. The fact that Juan Torres was building memories as he lay in bed, by all accounts unconscious, is still a cause for marvel. “In a way, he was there,” Perez says, “even though he wasn’t. It’s like dying and coming back again.”
In 2004, after attending the European conference I stated that awakening centers need to be established in Canada. For those who are reading this article and have a family member who is PVS, try to stimulate the brain, as the family did for Torres. There is nothing to lose.


Dr. Jeff Koloze said...

I'm posting this on Facebook,, Google+, Linked In and Twitter. People need to know cases like this where the deceptive phrase "vegetative state" could endanger human lives.

Della said...

This is wonderful, even though it's terrible to know that people might be aware of their situation.

Unknown said...

it says that people are dehydrated and starved to death if all support is removed. A nurse in one of our " Death and Dying" classes stated that giving food and hydration to unconscious persons can overload their systems and cause pneumonia as well. They can also suffer from fatal aspiration of food or fluid into their lungs.