A pioneering Belgian neurologist has been awarded €1m to fund further work in helping diagnose the most severe brain injuries, as he seeks to battle “the silent epidemic” and help people written off as “vegetative” who, it is believed, will never recover.
Steven Laureys, head of the coma science group at Liège University hospital, plans to use the £850,000 award – larger than the Nobel prize – to improve the diagnosis of coma survivors labelled as being in a “persistent vegetative state”.
That is “a horrible term” he says, although still one widely used by the general public and many clinicians. Laureys, who has spent more than two decades exploring the boundaries of human consciousness, prefers the term “unresponsive wakefulness” to describe people who are unconscious but show signs of being awake, such as opening their eyes or moving. These patients are often wrongly described as being in a coma, a condition that only lasts a few weeks, in which people are completely unresponsive.
“The old view was to consider consciousness, which was one of the biggest mysteries for science to solve, as all or nothing,” he told the Guardian, shortly after he was awarded the Generet prize by Belgium’s King Baudouin Foundation this week. He said that a third of patients he treats at the Liège coma centre had been wrongly diagnosed as being in a vegetative state, despite signs of consciousness.
As a young doctor in the 1990s he was frustrated by the questions that torture the families of coma survivors: can their loved ones see or hear them? Can they feel anything, including pain?
Laureys and his 30-strong team of engineers and clinicians have shown that some of those with a “vegetative state” diagnosis are minimally conscious, showing signs of awareness such as responding to commands with their eyes.
“Some [patients] are in that state, minimally conscious. [Some] will recover further. Others will not. So the only way forward is to increase our efforts to better document their efforts.”
Every year in Belgium, 50 people awake from a coma into a state of unresponsive wakefulness, while 100 have minimal consciousness. The BBC found in 2016 that the NHS was caring for 105 patients in “prolonged disorders of consciousness”, although that figure is almost certainly a large underestimate as only a quarter of health trusts completed the survey.
“It is a silent epidemic: there are hundreds of patients, sometimes in terrible conditions in nursing homes with the elderly,” Laureys said. “They are young patients with traumatic brain injury [who] did not receive the proper chance.”
For some patients, a clearer diagnosis could help their families make painful decisions. “That would help them to accept ‘OK, we lost the battle’ and make very difficult decisions about end of life.”
But others are being written off by clinicians, when the brain might heal with the right care. “There is a fear to give false hope, but in reality there is also the risk of false despair.”
Peter Broeckx knows this medical attitude well. He was told his son Stig would spend the rest of his life in a nursing home after a catastrophic cycling accident.
Stig Broeckx, a champion cyclist, was competing in the Tour of Belgium in May 2016 when two motorcyclists careened into the peloton, which was racing downhill at top speed. Thrown off his bike, Stig suffered terrible injuries. His heart stopped beating. A team of three doctors spent more than an hour bringing him back to life. Now walking with a stick, he says, smiling: “I was dead for two hours.”
It could have been different. After two months in intensive care, Stig’s family were told he had no hope. “They declared him as vegetative. That was it,” his father recalls. But the Broecxk family were convinced Stig was conscious. They could see his eyes moving. Medical staff didn’t believe them. “We pushed and pushed and pushed to bring him to the coma centre [in Liège]. And after that, the miracle happened in that coma centre.”
The Laureys team found signs of consciousness and began to work on more intensive treatment. The road to recovery is long. Stig had to Google himself to find out who he was. He still has no memory of the five years before the accident. He hopes now to return to a normal life and use his public renown in cycling-mad Belgium to raise awareness of treatment and support for coma survivors.
He recently began cycling again – not racing, but riding his bike under a blue sky, captured on a phone video by his father. Was he not afraid? “I was already dead, so why [be afraid] now?”
Recovery depends on the nature of the brain injury and varies from one person to another.
Bénédicte Jullien was 35 when she suffered a rare stroke that left her completely paralysed. The mother of two, a former teacher who loved to travel and had spent time in South America and Ireland, now lives with “locked-in” syndrome, meaning she can not speak and can barely move, although her mind remains as alert as it always was.
She communicates with the help of a computer that reads her eye movements: “I live in the present, and if one day there is an advance [in medicine], even better,” she told the Guardian.
Jullien wants the general public to stop treating people in her condition like idiots – a message she relays to the 22,000 followers of her Facebook page. “Certainly there is a little fear, but this doesn’t excuse, at all, people who say hello to my husband and not to me, who talk about me in the third person when I am there, or start a discussion and turn their backs on me … society treats you like an imbecile, when you are sound in mind.”
She and her husband raised €350,000 through a crowdfunding campaign, to build an adapted house for her and her family.
Laureys will use a portion of the prize funds to provide support to families and patients in adapting to such life-changing accidents and illnesses.
Some of the funds will be spent on clinical trials of new treatments, in particular apomorphine, a substance that is injected under the skin and stimulates chemical processes in the brain in some patients. Preliminary results are encouraging, says Laureys, but “it is way too early” to draw bigger conclusions.
The Generet fund, named after its Belgian benefactor, was launched in 2018 to fund research into rare diseases, where treatments are unprofitable for pharmaceutical companies and unaffordable for university departments.
Beyond the prize, the neurologist urges people to make living wills and appoint someone to act in their interests, in case of a life-changing brain injury. A brain trauma – whether through accident or illness – is something that could happen to anyone, he said. “It could happen to me today, tomorrow, next week, to my spouse, my child, my parents. And it’s only when it happens that the families start to think about what we do now.”
Only then can doctors treat people according to their wishes, he says: “It is not for me as a neurologist and a medical doctor to decide whether this is a life worth living, and [that] prognosis is a life not worth living.”