Article About Coma, Vegetative State, Etc - The Mind Readers - Mosaic

4/27/2014 The mind readers | Mosaic
http://mosaicscience.com/story/mind-readers?src=longreads 1/24
Thousands remain trapped between
life and death. Three scientists are
working to free them. Roger Highfield
reports.
20 April 2014
Imagine you wake up, locked inside a box, says Adrian Owen. Its only just big
enough to hold your body but sufficiently small that you cant move.
Its a perfect fit, down to every last one of your fingers and toes. Its a strange box
because you can listen to absolutely everything going on around you, yet your
voice cannot be heard. In fact, the box fits so tightly around your face and lips that
you cant speak, or make a noise. Although you can see everything going on
around the box, the world outside is oblivious to whats going on inside.
Inside, theres plenty of time to think. At first, this feels like a game, even one that
is strangely amusing. Then, reality sets in. Youre trapped. You see and hear your
family lamenting your fate. Over the years, the carers forget to turn on the TV.
Youre too cold. Then youre too hot. Youre always thirsty. The visits of your
friends and family dwindle. Your partner moves on. And theres nothing you can do
about it.
Owen and I are talking on Skype. Im sitting in London, UK, and hes in another
London three-and-a-half thousand miles away at the University of Western
Ontario, Canada. Owens reddish hair and close-cropped beard loom large on my
screen as he becomes animated describing the torment of those with no voice: his
patients.
People in a vegetative state are awake yet unaware. Their eyes can open and
sometimes wander. They can smile, grasp anothers hand, cry, groan or grunt. But
they are indifferent to a hand clap, unable to see or to understand speech. Their
motions are not purposeful but reflexive. They appear to have shed their
memories, emotions and intentions, those qualities that make each one of us an
individual. Their minds remain firmly shut. Still, when their eyelids flutter open, you
are always left wondering if theres a glimmer of consciousness.
A decade ago, the answer would have been a bleak and emphatic no. Not any
longer. Using brain scanners, Owen has found that some may be trapped inside
their bodies yet able to think and feel to varying extents. The number of patients
with disorders of consciousness has soared in recent decades, ironically, because
Cdric Gerbehaye/Agence VU
The mind readers
of the rise and success of intensive care and medical technologies. Doctors have
steadily got better at saving patients with catastrophic injuries, though it remains
much easier to restart a heart than restore a brain. Today, trapped, damaged and
diminished minds inhabit clinics and nursing homes worldwide in Europe alone
the number of new coma cases is estimated to be around 230,000 annually, of
which some 30,000 will languish in a persistent vegetative state. They are some of
the most tragic and expensive artefacts of modern intensive care.
Owen knows this only too well. In 1997, a close friend set off on her usual cycle to
work. Anne* had a weak spot on a blood vessel in her head, known as a brain
aneurysm. Five minutes into her trip, the aneurysm burst and she crashed into a
tree. She never regained consciousness.
The tragedy left Owen numb, yet Annes accident would shape the rest of his life.
Owen began to wonder if there was a way to determine which of these patients
were in an unconscious coma, which were conscious and which were somewhere
in between?
That year, he had moved to the Medical Research Councils Cognition and Brain
Sciences Unit in Cambridge, where researchers used various scanning
techniques. One, positron emission tomography (PET), highlights different
metabolic processes in the brain, such as oxygen and sugar use. Another, known
as functional magnetic resonance imaging (fMRI), can reveal active centres in the
brain by detecting the tiny surges in blood flow that take place as a mind
whirrs. Owen wondered whether he could use these technologies to reach out to
patients, like his friend, stuck between sensibility and oblivion. At the core was a
deceptively simple question: how do we know that another person is conscious?
This man has been diagnosed as being in a persistent vegetative state. But his f amily believe they have
witnessed moments of recognition and evidence of consciousness. At their own expense they have taken
him to Lige to see if he has locked-in syndrome.
Half a century ago, if your heart stopped beating you could be pronounced dead
even though you may have been entirely conscious as the doctor sent you to the
morgue. This, in all likelihood, accounts for notorious accounts through history of
those who came back from the dead. As a corollary, those who were fearful of
being buried alive were spurred on to develop safety coffins equipped with
feeding tubes and bells. As recently as 2011, a council in the Malatya province of
central Turkey announced it had built a morgue with a warning system and
refrigerator doors that could be opened from the inside.
What do we mean by dead? And who should declare when an individual is dead?
A priest? A lawyer? A doctor? A machine? Owen discussed these issues at a
symposium in Brazil with the Dalai Lama and says he was surprised to find that
they both agreed strongly on one point: we need to create an ethical framework for
science that is based on secular, rather than religious, views; science alone should
define what we mean by death.
The problem is that the scientific definition of death remains as unresolved as the
definition of consciousness. Much confusion is sowed by the term clinical death,
the cessation of blood circulation and breathing. Even though this is reversible, the
term is often used by mindbody dualists who cling to the belief that a soul (or self)
can persist separately from the body. Today, however, being alive is no longer
linked to having a beating heart, explains Owen. If I have an artificial heart, am I
dead? If you are on a life-support machine, are you dead? Is a failure to sustain
independent life a reasonable definition of death? No, otherwise we would all be
dead in the nine months before birth.
The issue becomes murkier when we consider those trapped in the twilight worlds
between normal life and death from those who slip in and out of awareness, who
are trapped in a minimally conscious state, to those who are severely impaired in
a vegetative state or a coma. These patients first appeared in the wake of the
development of the artificial respirator during the 1950s in Denmark, an invention
that redefined the end of life in terms of the idea of brain death and created the
specialty of intensive care, in which unresponsive and comatose patients who
seemed unable to wake up again were written off as vegetables or jellyfish. As is
always the case when treating patients, definitions are critical: understanding the
chances of recovery, the benefits of treatments and so on all depend on a precise
diagnosis.
Pioneering work to understand and categorise disorders of consciousness was
carried out in the 1960s by neurologist Fred Plum in New York and neurosurgeon
Bryan Jennett in Glasgow. They were the odd couple. Jennett or BJ, as he was
known to colleagues was reserved and gentlemanly, with an unusually
penetrating and analytical mind. Plum was larger than life, commanding and an
inspiring teacher who was famous for his idiosyncratic ways of diagnosing
neurological conditions. Fred Plum stories abound: he would diagnose
hemispatial neglect (where damage in one cerebral hemisphere makes a person
behave as if their opposite side does not exist) by seeing if the patient could tell if
his glasses were askew and one arm pulled out of a sleeve of his coat.
Plum coined the term locked-in syndrome, in which a patient is aware and awake
but cannot move or talk. With Plum, Jennett devised the Glasgow Coma Scale to
rate the depth of coma, from a minimum of 3 to a maximum of 15, and Jennett
followed up with the Glasgow Outcome Scale to weigh up the extent of recovery,
from death to mild disability. Together they adopted the term persistent vegetative
state for patients who, they wrote, have periods of wakefulness when their eyes
are open and move; their responsiveness is limited to primitive postural and reflex
movements of the limbs, and they never speak. In 2002, Jennett was among a
group of neurologists who chose the phrase minimally conscious to describe
those who are sometimes awake and partly aware, who show erratic signs of
consciousness so that at one time they might be able to follow a simple instruction
and another they might not. In this way, Plums yin and Jennetts yang launched
the field of coma science. Even today, however, were still arguing over who is
conscious and who isnt.

Adrian Owen has a well-honed routine he uses at public events. A confident
performer helped no doubt by spending 14 years as the lead singer of a band
called You Jump First he asks the audience to raise their left arms. They obey.
After a pause, he asks them to raise their right arms. Once again, they comply. I
know youre conscious because youve all got your hands up, he declares.
The same sort of test features in countless medical dramas, when the doctor
clasps the hand of a seemingly unconscious patient and says, Squeeze if you can
hear me. A tightening grip would represent an act of will. That basic interaction
between two conscious minds is the only real signature of being both aware and
awake, says Owen. But what if the patient does not squeeze? What is a doctor
supposed to think then?
The public perception of coma (from the Greek koma, meaning deep sleep) is of
a patient lying peacefully, eyes shut, without a glimmer of arousal or
consciousness, eventually awakening to make a full recovery. The images of films
such as Hable con Ella (Talk to Her) and While You Were Sleeping are a long way
from the intubations, double incontinence and uncertainty of the reality: a person
cannot be awakened, does not respond to pain, light or sound, and does not
undergo a normal cycle of sleep and wakefulness.
Kate Bainbridge, a 26-year-old schoolteacher, lapsed into a coma three days after
she came down with a flu-like illness. Her brain became inflamed, including the
primitive region atop the spinal cord, the brain stem, which rules the sleep cycle. A
few weeks after her infection had cleared, Kate awoke from the coma but was
diagnosed as being in a vegetative state. Luckily, the intensive care doctor
responsible for her, David Menon, was also a Principal Investigator at the newly
opened Wolfson Brain Imaging Centre in Cambridge, where one Adrian Owen then
worked.
Menon wondered if elements of cognitive processing might be retained in patients
in a vegetative state and discussed with Owen how to use a brain scanner to
detect them. In 1997, four months after she had been diagnosed as vegetative,
Kate became the first patient in a vegetative state to be studied by the Cambridge
group. The results, published in 1998, were unexpected and extraordinary. Not
only did Kate react to faces: her brain responses were indistinguishable from those
of healthy volunteers. Her scans revealed a splash of red, marking brain activity at
the back of her brain, in a part called the fusiform gyrus, which helps recognise
faces. Kate became the first such patient in whom sophisticated brain imaging (in
this case PET) revealed covert cognition. Of course, whether that response was a
reflex or a signal of consciousness was, at the time, a matter of debate.
The results were of huge significance for science but also for Kate and her
parents. The existence of preserved cognitive processing removed the nihilism
that pervaded the management of such patients in general, and supported a
decision to continue to treat Kate aggressively, recalls Menon.
Kate eventually surfaced from her ordeal, six months after the initial diagnosis. She
described how she was indeed sometimes aware of herself and her surroundings.
Each day she woke up, she fell asleep, but like all such patients she could not
respond to peoples questions. Worse, she had a raging thirst that was never
slaked.
They said I could not feel pain, she says. They were so wrong. Sometimes
shed cry out, but the nurses thought it was just a reflex. She felt abandoned and
helpless. Hospital staff had no idea how much she suffered in their care. Kate
found physiotherapy scary: nurses never explained what they were doing to her.
She was terrified when they removed mucus from her lungs. I cant tell you how
frightening it was, especially suction through the mouth, she has written. At one
point, her pain and despair became so much that she tried to snuff out her life by
holding her breath. I could not stop my nose from breathing, so it did not work. My
body did not seem to want to die.
Kate says her recovery was not so much like turning a light on but a gradual
awakening. It took her five months before she could smile. By then she had lost
her job, her sense of smell and taste, and much of what might have been a normal
future. Now back with her parents, Kate is still very disabled and needs a
wheelchair. Twelve years after her illness, she started to talk again and, though still
angry about the way she was treated when she was at her most vulnerable, she
remains grateful to those who helped her mind to escape.
She sent Owen a note.
Dear Adrian,
Please use my case to show people how important the scans are. I want more
people to know about them. I am a big fan of them now. I was unresponsive and
looked hopeless, but the scan showed people I was in there.
It was like magic, it found me.
When you are awake, your brain has to make sense of a flood of information from
your senses. To make the most of its limited data-processing resources, our
ancestors evolved a brain that can focus on that approaching spear or lurking lion
rather than a broad sweep of savannah landscape. One can think of it as a
spotlight of attention that illuminates key sensory information in the brain, which
then enters into conscious awareness. This is the minds spotlight on the outside
world, with awareness at its focus and the degree of wakefulness tuning its
intensity.
Steven Laureys, who leads the Coma Science Group at the University of Lige in
Belgium, is one of those seeking the source of this illumination. He sits before me
clutching a little plastic brain. There are islands of blue on the surface, one at the
front and one at the back. He divides it in two, revealing a further blue dot deep
inside. This is the thalamus, a two-sided structure that sits atop the brain stem and
acts as a relay station for incoming sensory information. There is no such thing as
a consciousness region in the brain, he explains. But subtract the fMRI scans of
vegetative patients who are awake and unaware from the scans of those who are
awake and fully aware and you find the difference boils down to an awareness
network, the areas marked in blue on his plastic brain.
Laureys describes a thought experiment. If I use a scalpel to remove the blue
regions you would still be awake, breathe and move but you would not be aware.
Similar networks exist in other mammals to varying extents, he explains, and the
traditional idea that we alone are conscious while all other animals are automata is
unlikely to be true. Given our studies of vegetative patients, we have tended to
underestimate consciousness in the past, he says.
This idea of an awareness network chimes with various theories of consciousness,
such as the global workspace first proposed by Amsterdam-born neurobiologist
Bernard Baars. In essence, it suggests that awareness emerges from neurons
distributed throughout the cortex in a network that blends sensory information and
filters out contradictory or unnecessary information to create a unified picture of
reality.
This view complements the work of Nicholas Schiff at Weill Cornell Medical College
in New York. A neurologist, he started out as a disciple of Fred Plums school.
Schiffs working life is a balancing act between putting the interests of his patients
and their families first and keeping true to the science as he wrestles with
disorders of consciousness. Theres a lot we dont know, he admits. Frankly, I
am wrong a lot of the time.
Schiff started to piece together this neural circuitry, building on pioneering
experiments conducted on cats in the 1940s. These showed how the animals could
be revived from anaesthesia by stimulating the thalamus, which plays a crucial part
in the brains complex orchestra. Studies suggest that a key population of nerve
cells (intralaminar thalamic neurons), radiating from this hub to the outer rind (the
cortex) and every corner of the brain, have a central role in arousal and waking
up. By the same token, they have a central role in coma too: they are more
vulnerable than other nerve cells to harm, such as oxygen starvation, which helps
to explain why brain damage can lead to unconsciousness.
Schiff is interested in how the relay post that is the thalamus links with a
surrounding structure called the striatum and with the frontal cortex. And among
these deeper brain regions is an area dubbed the posterior medial complex, a
network whose activity is impaired in vegetative brains.
CC-BY [http://creativecommons.org/licenses/by/4.0/] : Bret Syf ert/Wellcome Images
The thalamus and frontal lobe are also more active in conscious and locked-in
patients. Together, Schiff and Laureys have identified three broad brain circuits
those in the thalamus, the frontal lobe and the posterior medial complex that are
key to consciousness.
At scientific meetings, Schiff has outlined a more detailed version of this neural
structure, called the mesocircuit, which actually consists of two circuits linking the
thalamus to the cortex. Some of the connections involved in the mesocircuit
stimulate nerve activity, others reduce or prevent it. Overall, higher-level
consciousness emerges as a dynamic coalition of these two parallel interactive
brain networks. This theory, which he and Laureys are putting to the test, also
reveals a way in which one might jump-start a stalled brain. Over the years, a
remarkable series of experiments have shown how a mind might be coaxed back
into awareness.
In 1995, Schiff studied an 81-year-old woman with a disordered consciousness. As

a result of an acute stroke, she had suffered hemispatial neglect. She was unable
to identify her right hand as her own. Ice-cold water was squirted into her ear, as a
standard test to see the extent to which her responses were lopsided. To Schiffs
amazement, the water reversed almost all her symptoms: Thats my hand! she
cried out. Schiff believed that the chill had stimulated her inner ear, which controls
the sense of balance through the vestibular system, and, in turn, her thalamus,
knitting together the networks that had been disrupted by the stroke. Four minutes
later, when the water had warmed, she lost her hand once again.
The case helped him work up the basic neuroscience of how to increase
awareness in a brain stalled in limbo by stimulating the thalamus. Armed with this
understanding, Schiff has provided insight into the paradoxical discovery that
some patients in vegetative states can be awoken with a sedative, zolpidem. One
of the best-known cases is the South African Louis Viljoen, who had been left
vegetative by a road accident. One day in 1999, Wally Nel, a GP working near
Johannesburg, gave Louis the drug to ease the way that he clawed at his
mattress. Instead of being relaxed, Viljoen sat bolt upright, smiled, and said: Hello
Mum. Am I in hospital? Schiff believes that the drug dampens down so-called
medium spiny neurons in the part of the mesocircuit that links the striatum, the
globus pallidus and the thalamus. Because these neurons inhibit the thalamus,
quelling their activity can actually boost awareness. Just as a little alcohol can
initially stimulate a buzz, so zolpidem can help turn the brain on rather than off,
says Schiff.
A study by Schiff and Laureys shows how slow waves of nerve activity, of the kind
seen in sleep or anaesthesia, wash over the brain before the drug is given, but
afterwards sluggish synchronicity gives way to the crackle of high-frequency brain
waves typically seen in conscious patients. PET images tell the same story,
revealing how the drug ramps up brain metabolism. Similar effects are caused by
another compound, the anti-Parkinsons drug amantadine. Laureyss team in Lige
finds that about half of patients in a minimally conscious state show mild
improvement in awareness as a result of receiving the drug.
The awareness network can be electrically roused. Laureys and his colleagues
recently tested transcranial direct-current stimulation (tDCS), in which scalp
electrodes are used to pass a weak direct current through the skull to alter the
excitability of underlying brain tissue. The Lige team applied tDCS for 20 minutes
to part of the mesocircuits of 55 people who were in a minimally conscious or
vegetative state. They found that 15 showed glimmers of consciousness as a
result. Some showed responses to commands, even though it was several years
after they had been declared minimally conscious. Most dramatic, for two patients
who had been declared minimally conscious a few months earlier, tDCS enabled
them to nod or move their eyes in response to six questions.
The method offers a powerful way to probe which circuits have to be manipulated
to awaken a silent brain. In theory, at least, tDCS offers another way to reactivate
circuits to help a damaged brain to recover some functionality, even several years
after suffering severe damage, Laureys explains. However, the results are not as
remarkable as those seen in a case where the thalamus was stimulated directly.
In 2005, Schiff applied his emerging understanding of the circuits of consciousness
to Jim*, a 38-year-old man who had been beaten and robbed and was left
minimally conscious. Jims eyes had mostly remained shut. He showed no sign of
awareness that his family could detect. His plight seemed hopeless. Eventually,
Jims mother gave a do not resuscitate order to doctors. Schiff thought different.
Schiff had earlier scanned Jim with fMRI, in 2001. His team had played subjects,
including Jim, an audiotape in which a relative or loved one reminisced. Jim
showed near-normal patterns in the language-processing areas of his brain and
this told Schiff that some of Jims neural networks were still working. In detailed
fMRI scans, Jim had shown that, despite having a very underactive brain, he had
strongly preserved large-scale language networks. When he heard a story that
meant something to him, his brain lit up. This encouraged Schiff to revive the idea
he had mulled over for a decade. What if they activated Jims thalamus by deep
brain stimulation?
A brain pacemaker was implanted into Jim. Thanks to the regular pulses of
electricity it delivered to his thalamus, he was able to use words and gestures,
respond reliably to requests, eat normally, drink from a cup, and carry out simple
tasks such as brushing his hair. Schiff believes that once a brain re-engages with
the world, it accelerates processes of repair. For the next six years, before Jim died
of unrelated causes, he kept his mind above the minimally conscious state. He
could converse in short sentences reliably and consistently and make his wishes
known, says Schiff. He could chew and swallow and eat ice cream and hang out.
His family told us that they had him back. The case made the front page of the
New York Times. I prayed for a miracle, his mother told me at the time he was
brought back. The most important part is that he can say Mummy and Pop, I love
you. God bless those wonderful doctors. I still cry every time I see my son, but it is
tears of joy.
In a forested campus south of Lige, Steven Laureys studies vegetative patients in

research that dates back decades. Working there as part of the Cyclotron
Research Centre in the 1990s, he was surprised when PET brain scans revealed
that the patients could respond to a mention of their own name: meaningful sounds
produced a change in blood flow within the auditory primary cortices. Meanwhile,
on the other side of the Atlantic, Nicholas Schiff was finding that within
catastrophically injured brains lay partially working regions, clusters of remnant
neural activity. What did it all mean?
At that time, doctors thought they already knew the answers: no patient in a
persistent vegetative state was conscious. Never mind that staring at images made
the brain light up, they carped: you can do that in a sedated monkey. Based on
previous experience, a brain starved of oxygen as a result of a heart attack or a
stroke was unlikely to recover if it didnt in the first few months. These patients had
suffered a fate that many people regarded as worse than death itself: they were
functionally brainless. Undead. Doctors, with the best intentions, thought it was
perfectly acceptable to end the life of a vegetative patient by starvation and the
withdrawal of water. This was the age of what Laureys calls therapeutic nihilism.
What Owen, Laureys and Schiff were proposing was a rethink of some of the
patients who were considered vegetative. A few of them could even be classed as
being fully conscious and locked-in. The establishment was doggedly opposed.
You cannot imagine the environment in the late 1990s, says Schiff. The hostility
we encountered went well beyond simple scepticism. Looking back, Laureys
pauses and smiles thinly: Medical doctors do not like to be told they are wrong.
Schiff, Laureys and Owen cut lonely and isolated figures at academic conferences,
desperately trying to explain their findings to their peers, who remained
unconvinced, even antagonistic. The trios ideas were condemned as a waste of
time.
Then came 2006. Owen and Laureys were trying to find a reliable way to
communicate with patients in a vegetative state, including Gillian*. In July 2005, this
23-year-old had been crossing a road, chatting on her mobile phone. She was
struck by two cars. Yet, though she had been diagnosed as vegetative, there was
something about her that caught the attention of Martin Coleman of the University
of Cambridge Impaired Consciousness Research Group, who submitted her for
study by Owen.
Five months later, a strange stroke of serendipity allowed Gillian to unlock her box.
The key arose from a systematic study Owen started with Laureys in 2005. They
had asked healthy volunteers to imagine doing different things, such as singing
songs or conjuring up the face of their mother. Then Owen had another idea. I
just had a hunch, he says. I asked a healthy control to imagine playing tennis.
Then I asked her to imagine walking through the rooms of her house. Imagining
tennis activates part of the cortex, called the supplementary motor area, involved
in the mental simulation of movements. But imagining walking around the house
activates the parahippocampal gyrus in the core of the brain, the posterior parietal
lobe, and the lateral premotor cortex. The two patterns of activity were as distinct
as a yes and a no. So, if people were asked to imagine tennis for yes and
walking around the house for no, they could answer questions via fMRI.
Gazing into Gillians vegetative brain with the brain scanner, he asked her to
imagine the same things and saw strikingly similar activation patterns to the
healthy volunteers. It was an electric moment. Owen could read her mind.
Gillians case, published in the journal Science in 2006, made front-page headlines
around the world. The result provoked wonder and, of course, disbelief. Broadly
speaking, I received two types of email from my peers, says Owen. They either
said This is amazing well done! or How could you possibly say this woman is
conscious?
As the old saw goes, extraordinary claims require extraordinary evidence. The
sceptics countered that it was wrong to make these radical inferences when there
could be a more straightforward interpretation. Daniel Greenberg, a psychologist
at the University of California, Los Angeles, suggested that the brain activity was
unconsciously triggered by the last word of the instructions, which always referred
to the item to be imagined.
Parashkev Nachev, a neurologist now at University College London, says he
objected to Owens 2006 paper not on grounds of implausibility or a flawed
statistical analysis but because of errors of inference. Although a conscious
brain, when imagining tennis, triggers a certain pattern of activation, it does not
necessarily mean that the same pattern of activation signifies consciousness. The
same brain area can be activated in many circumstances, Nachev says, with or
without any conscious correlate. Moreover, he argues that Gillian was not really
offered a true choice to think about playing tennis. Just as a lack of response
could be because of an inability to respond or a decision not to cooperate, a direct
response to a simple instruction could be a conscious decision or a reflex. Nachev
says that he is weary of stating, as he has time and again to the media, that
profound conceptual issues with the techniques used to redefine this penumbra of
consciousness remain unresolved.
What is needed is less philosophising and more data, says Owen. A follow-up
study published in 2010 by Owen, Laureys and colleagues tested 54 patients with
a clinical diagnosis of being in a vegetative state or a minimally conscious state;
five responded in the same way as Gillian. Four of them were supposedly in a
vegetative state at admission. Owen, Schiff and Laureys have explored alternative
explanations of what they observed and, for example, acknowledge that the brain
areas they study when they interrogate patients can be activated in other ways.
But the 2010 paper ruled out such automatic behaviours as an explanation, they
say: the activations persist too long to signify anything other than intent. Owen is
grateful to his critics. They spurred him on, for instance to develop a method for
asking patients questions that only they would know how to answer. You cannot
communicate unconsciously it is just not possible, he says. We have won that
argument.
Since Owens 2006 Science paper, studies in Belgium, the UK, the USA and
Canada suggest that a significant proportion of patients who were classified as
vegetative in recent years have been misdiagnosed Owen estimates perhaps as
many as 20 per cent. Schiff, who weighs up the extent of misdiagnosis a different
way, goes further. Based on recent studies, he says around 40 per cent of patients
thought to be vegetative are, when examined more closely, partly aware. Among
this group of supposedly vegetative patients are those who are revealed by
scanners to be able to communicate and should be diagnosed as locked-in, if they
are fully conscious, or minimally conscious, if their abilities wax and wane. But
Schiff believes the remainder will have to be defined another way altogether, since
being aware does not necessarily mean being able to use mental imagery. Nor
does being aware enough to follow a command mean possessing the ability to
communicate.
In 2009, Laureyss team asked one of the original group of 54 patients that he and
Owen had studied patient 23 a series of yes-or-no questions. It was the usual
drill: imagine playing tennis for yes, navigating the house for no. The Lige patient,
who had been in a vegetative state for five years, was able to answer five of six
questions about his earlier life and all of those were correct. Had he been on
holiday to a certain place prior to his injury? Was such-and-such his fathers
name? It was an exciting moment, said Laureys. We were stunned, adds Owen,
who helped independently score the tests. By showing us that he was conscious
and aware, patient 23 moved himself from the do not resuscitate category to the
not allowed to die category. Did we save his life? No. He saved his own life.
This is your big chance. Just do your best. Owen gazed down at 39-year-old
Scott Routley, lying on a gurney. Scott had studied physics at the University of
Waterloo, Ontario, but his promising career in robotics came to an end when, aged
26, he collided with a police vehicle. Since that accident, on 20 December 1999,
Scott had been diagnosed as being in a vegetative state by a well-seasoned
neurologist, Bryan Young, and in 2012 his diagnosis was confirmed by Owens
team, again using traditional methods.
As Owen talked to him, Scotts mouth remained wide open, apparently unaware,
the same way that hed been in the 12 years since the accident. This encounter
was filmed by a crew from the BBC. Reporter Fergus Walsh was there to witness
the moment that Owen attempted to reach inside Scotts mind. Owen admits now
that he was sceptical that the scans would reveal anything at all.
The team scanned Scott several times. To their surprise, the pattern of brain
activity showed Scott knew exactly who he was, where he was and that he was
actively choosing to answer the teams questions. My heart stopped when we
asked if, after 12 years, Scott was in pain, Owen recalls. Thankfully, the answer
was no.
Although Owens colleague, Lorina Naci, recounts how the experience of telling the
Routley family the news was quite emotional, the BBC crew were surprised at
their relative lack of celebrations. Not Owen. Scotts parents, Jim and Anne, and his
brother, Ritch, had always been convinced that he was conscious. They insisted
he could lift a thumb or move his eyes to indicate as much, even though standard
tests had always reached the same gloomy conclusion: Scott was unresponsive.
Scott had the same neurologist Young for more than a decade and had
appeared vegetative in every assessment, including more than a dozen separate
assessments by Owens own team. Perhaps the family discerned subtle signs of
consciousness that were almost undetectable, even to the trained eye. Or perhaps
they had deceived themselves, as many families do for comfort. Either way, it was
the word of the family against that of my team, and their word against an army of
specialists over many years, says Owen. Where the family saw a sign of cognition,
the doctors saw only wishful thinking. The scans showed that they were right,
perhaps for the wrong reasons we will never know but Scotts story teaches us
the value of objective measures. And the need for a little humility.
Theres anecdotal evidence that when contact is re-established with the occupant
of a living box they are understandably morose, even suicidal. They have been
ground down by frustration at their utter powerlessness, over the months, even
years, it can take to recognise their plight. Yet the human spirit is resilient, so much
so that they can become accustomed to life in this twilight state. In a survey of
patients with locked-in syndrome, Laureys has found that when a line of
communication is set up, the majority become acclimatised to their situation, even
content (again, these insights took some time to be accepted by the medical and
scientific establishment and even to be published in a scientific journal
reflecting the prevailing unease about the implications for hospitals and care
homes).
The important question is detecting the extent to which such patients are
conscious. Studies of large numbers of patients with brain injuries, and how they
fare over the years, show that it makes a huge difference to the chance of
recovery if a patient is minimally conscious rather than vegetative. The former
have fragmentary understanding and awareness and may recover enough to
return to work within a year or two. Yet there are still surprises, such as the case of
New York fireman Don Herbert, who awoke after a decade from a minimally
conscious state caused by a severe brain injury suffered while fighting a fire in
1995. In the past year, Schiff has recommended withdrawing care from a man who
had lain in a coma for eight weeks after a cardiac arrest. I was wrong, he says.
This man is now back at work. Schiff has used a technique called diffusion tensor
imaging to show how a brain can rewire itself even decades after an injury.
It is important too not to lose sight of the impact on the families. Take Jamel, a 41-
year-old construction worker left unconscious after a cardiac arrest. His family
became convinced he had a glimmer of awareness and, fighting against the
doctors stark diagnosis, spent almost 14,000 euros transporting him to Lige and
Steven Laureyss team for a detailed diagnosis. Sadly, their scans revealed no
signs of consciousness. The family took the news badly. His sister Leila insists that
Jamel can hear what they are saying. He was tired out by travel and surgery
before he had his scan, she explains. The family has vowed to gather video
evidence to show Laureys.
Parashkev Nachev has not changed his view since he first criticised Owens work
and has spelt out the basis of his unease in a more detailed paper published in
2010. For every relative of a living PVS [persistent vegetative state] patient given
(probably false) hope, another is burdened with the guilt of having acquiesced in
the withdrawal of treatment from someone who he has been led to believe may
have been more alive than it seemed, he says. There are moral costs to false
positives as well as to false negatives.
I find the whole media circus surrounding the issue rather distasteful, he told me.
The relatives of these patients are distressed enough as it is.
Laureys, Owen and Schiff spend a great deal of time with the families and
understand these sensitivities only too well. Owen counters that, from his years of
experience dealing with the families, they are grateful that doctors and scientists
take an interest and are doing everything that they can. These patients have
been shortchanged over the years, he insists. A recent study showed that many
people would grant more moral rights to a corpse than to someone in a vegetative
state. This surprising finding emerged when a team from the University of Maryland
and Harvard University asked 201 people to read accounts of a car accident in
which the protagonist lived, died or sank into a persistent vegetative state. The
latter was regarded as worse than death.
Owen is adamant that doctors have a moral duty to provide a correct diagnosis,
even if the results do cause guilt, unease or distress. We must give every patient
the best chance of an accurate diagnosis, so we can give them the appropriate
care that goes along with that diagnosis.
Under the umbrella classification of vegetative lies a vast array of different brain
injuries and, as a result, even some of the most vocal critics accept that some
vegetative patients are not as diminished as traditional measures suggest. Lynne
Turner-Stokes chairs a group for the Royal College of Physicians that is revising
UK guidelines on Prolonged Disorders of Consciousness. She remains
unconvinced that the exceptional cases identified by Owen, Laureys and Schiff are
particularly common or that enough has been done to establish brain scanners as
a standard tool for routine diagnosis, particularly when the cost and convenience
of these methods are taken into account. When it comes to extending these tests
to all patients in a vegetative states as standard practice, the evidence is just not
there yet, she says.
Despite all the hard work done since the pioneering research of Plum and Jennett,
theres still a need for basic spadework to harmonise standards, tools and
timescales of assessment for these patients, says Turner-Stokes. More has to be
done to ensure that a vegetative patient in, say, the UK is assessed in the same
way as one in the USA, and to close gaps in understanding of this very complex
group of patients, notably how their brains can change and heal over time. But she
stresses that she is simply being cautious, not sceptical, describing the work of
Owen, Laureys and Schiff as important and exciting.
We are only just beginning to scratch the surface, she says. But I have no doubt
[these techniques] will have a place, eventually, in the evaluation of patients.
The art of mind reading is constantly being refined. Owen and Lorina Naci have
come up with a more reliable way to communicate with patients by getting them to
focus their attention while in the scanner. First, a yes/no question is asked, and
then a recording is played of the word yes repeated several times interspersed
with distracting, random numbers, and a similar recording with no. The participant
has to count how many of the correct answer they hear and ignore the incorrect
answer. This mental effort (selective auditory attention) shows up distinctively
when Naci and Owen examine the brain scans, so they can decode the responses
correctly based on activity changes within the attention network of the brain.
In follow-up studies using this method, Scott Routley showed he knew his own
name, as distinct from another, and that he was in a hospital rather than
elsewhere, indicating he possessed a higher level of self-awareness. This not
only further corroborated that he was, indeed, consciously aware but also revealed
that he had far richer cognitive reserves than could be assumed based on his
diagnosis as being vegetative, says Owen. He had autobiographical knowledge
and awareness of his location in time and space.
Yet there are many issues left to resolve. After the initial diagnosis, relatively little
effort is made to systematically explore brain function in these patients, says Schiff.
There are also minimally conscious patients who may not be able to imagine tennis
and so on, when a few exceptional vegetative patients can. Schiffs team has
encountered a patient who had remained vegetative, or in a very low-level
minimally conscious state, for more than one year, who had not responded to fMRI,
but later regained the ability to make conversation (though, of course, whether
they had truly been vegetative is another question). And a 2014 study by
Laureyss group suggests that PET could be better than fMRI at predicting the
likelihood that a patient may wake up. It also estimates that the standard diagnostic
procedure misses signs of responsiveness in around a third of patients classed as
minimally conscious which Owen notes is consistent with his and Schiffs findings.
Indeed, other limitations are caused by the use of medication during trials or the
huge diversity of the patients that are usually collapsed into groups (to spare
doctors from carrying out the same procedures on the same patient again and
again). When it comes to younger patients, there is a limit to the number of PET
scans they can have in a given period because a radioactive tracer has to be
injected into the body. fMRI is also hindered by the fact that huge, multimillion-
dollar imaging machines confining and magnetic are unsuitable for patients
whose bodies are affected by spasticity or have been rebuilt with screws, plates,
pins and other metal.
But more convenient alternatives are in development. Laureys is studying pupil
dilation, which is linked with thought (the wider the pupil, the higher a patients
emotional arousal, while more subtle dilations have been linked to mental functions
such as decision making). Another method implants fine electrodes in the hand of
a patient to measure sub-threshold muscle activity triggered when they are asked
to move.
Perhaps the most promising alternative is electroencephalography (EEG), which
detects crackles of electrical activity in the brain through electrodes attached to
the scalp. This is cheap, relatively portable and fast (with milliseconds of lag,
compared with 8 seconds for fMRI), meaning that a research team can ask up to
200 questions in 30 minutes. This method can also cope with patients who twitch
and move, or who have been reconstructed with implants. This is a vulnerable
patient population, and moving them is never easy, says Owen, whose team have
equipped a jeep. We pack our gear in our EEJeep and visit them instead.
A bedside EEG consciousness detector has been tested in Addenbrookes
Hospital, Cambridge, and in the University Hospital of Lige. It looks promising but
doubts remain, even among the believers, with Schiffs team sceptical whether one
particular EEG methodology used with the detector really works. One has to be
careful of the dead salmon effect, admits Laureys, referring to an apparently
frivolous study of a deceased fish that made a serious point about the limitations of
fMRI. The methodology struggled to distinguish real brain activity from background
noise, suggesting that the dead Atlantic salmon that had been put in the scanner
was actually thinking. We dont want to get excited about dead fish, says
Laureys, but, on other hand, we do not want to be so conservative and
demanding of statistics that we miss things. The dispute has caused some
tensions though united against their critics, the groups are still competitive but
Schiff stresses that it is all for the greater good: We are all funded on [a]
multinational grant to cross-validate and share methods and agree that they work.
That is why we pushed our criticisms hard and in the end it was better for
everybody.
Today it is normal to think of the transition between life and death as a question of
how the brain is rather than how the heart is. A patient in a persistent vegetative
state still has a functioning brain stem and can breathe unaided. They may
possess some degree of consciousness and have a slim chance of recovering. By
comparison, a PET scan of a brain-dead person reveals a black void within the
skull, a barren neural landscape with no chance of sparking back into activity
again: their body cannot survive without artificial help.
Though they are becoming rarer, there are still chilling stories that apparently blur
the boundaries between life and death. In October 2009, Colleen Burns was
admitted to St Josephs Hospital Health Center in New York after a drug overdose.
Doctors pronounced the 39-year-old dead while she was in a drug-induced coma.
Fortunately for Burns, she woke minutes before the first incision was to be made to
harvest her organs. Remember that not a single patient who showed clinical
criteria of brain death has ever recovered consciousness, says Laureys.
Whenever a brain-dead patient does manage this feat, it turns out they were not
properly examined and the criteria for brain death not properly applied.
Schiff believes that a combination of devices, drugs and cell therapies, laying the
foundations for a new generation of diagnostics and treatments, will illuminate the
penumbra between conscious and unconscious. Were not quite there yet, he
stresses. Much of the work to date has demonstrated the value of brain scans on
populations of patients but, ultimately, they need dependable methods that will
work on a patient-by-patient basis, which means precise definitions and standards.
They need ways to deal with false positives and false negatives, and to make
sense of the impact of a bewildering array of brain injuries, from oxygen starvation
to blows and bullet wounds. We are going to have to do some amazing small-
scale studies to show what is possible in one or two subjects before everyone gets
simple things done that can help them today, Schiff says. Eventually, he believes
there will be a cultural shift. Laureys thinks we may need to start with the
language used to describe these patients he wants replace the loaded term
vegetative with the neutral unresponsive wakefulness.
Despite the scepticism, the difficulties in dealing with such diverse groups of
patients, and the challenges of standardising diagnosis, the research is moving
forward. It is already making a difference, enabling a few patients to tell their
doctors whether they need pain relief.
Back on Skype, Owen smiles, considering whether to tell me what he is planning
next. Owens partner, Jessica Grahn, also a neuroscientist, became pregnant at
the start of 2013. What happens when consciousness winks on in the developing
brain?
He emails me a video of their unborn child, a montage of fMRI slices through their
babys head, as it twists and turns in Jessicas womb. My colleagues have been
doing fMRI on my wifes tummy every week for a few weeks now to see if we can
activate the fetuss brain, he writes. It is AMAZING.
Scott Routley died in September 2013 with his family by his side.
Adrian Owens friend Anne remains in a vegetative state.
Adrian Owen and Jessica Grahns baby boy, Jackson, was born on 9 October
2013.
* Some names have been changed to protect identities.
Disclosure: The writer and Adrian Owen have previously co-authored a paper
[http://www.cell.com/neuron/abstract/S0896-6273(12)00584-3] on human intelligence published
in Neuron.
Author: Roger Highfield [/people/rogerhighf ield]
Editor: Mun-Keat Looi [/people/mun-keatlooi]
Fact checker: Katie Palmer
Copyeditor: Tom Freeman [/people/tomf reeman]
Photographer: Cdric Gerbehaye
Main references
This article is based on interviews conducted over a decade while the author was
the Editor of New Scientist and Science Editor of the Daily Telegraph, on a draft
book proposal with Adrian Owen, and on a range of recent interviews with those
mentioned in the article and others, notably John Pickard, Tristan Bekinschtein,
Athena Demertzi and Lizette Heine. Ben LHeureux helped translate interviews
conducted in French.
Definition of coma from The Diagnosis of Stupor and Coma
[http://books.google.co.uk/books/about/The_Diagnosis_of _Stupor_and_Coma.html?
id=Pbl4CH4NlQsC&redir_esc=y] by Fred Plum and Jerome Posner (1966).
More on vegetative state from Jennett and Plum in their 1972 Lancet paper
[http://www.sciencedirect.com/science/article/pii/S0140673672902425] .
Definition and diagnostic criteria for the minimally conscious state
[http://www.ncbi.nlm.nih.gov/pubmed/11839831] .
A 2012 review of coma and consciousness
[http://www.sciencedirect.com/science/article/pii/S1053811911014431] , reframed by
neuroimaging, by Nicholas Schiff and Steven Laureys.
Papers on what its like to have locked-in syndrome
[http://www.ncbi.nlm.nih.gov/pubmed/16186044] and how it makes patients feel
[http://bmjopen.bmj.com/content/1/1/e000039.abstract] .
An overview of death, unconsciousness and the brain
[http://www.coma.ulg.ac.be/papers/vs/death_unconsciousness_NatureRevNeurosci05.pdf ] by Laureys.
A study on how people perceive those in a persistent vegetative state
[http://www.sciencedirect.com/science/article/pii/S0010027711001752] .
For more information on the mesocircuit, see this pair
[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2931585/] of papers [http://www-
users.med.cornell.edu/~jdvicto/pdf s/schi09.pdf ] by Nicholas Schiff.
The 1998 Lancet paper on Kates PET brain scans
[http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2805%2977805-3/f ulltext] . Further
perspectives on PET in this paper [http://brain.oxf ordjournals.org/content/123/8/1589.long] by
Laureyss group.
REFERENCES AND RESOURCES
[#
]
The famous 2006 Science paper [http://www.sciencemag.org/content/313/5792/1402.abstract]
by Adrian Owens group on detecting awareness in the vegetative state. And more
on fMRI studies of this in this 2007 paper [http://www.ncbi.nlm.nih.gov/pubmed/17509898] .
Owen and Laureyss study of 54 patients
[http://www.coma.ulg.ac.be/papers/vs/NEJM_2009.pdf ] with disorders of consciousness.
Owen and Lorina Nacis paper on selective auditory attention [http://lorinanaci.org/wp-
content/uploads/2012/06/NaciOwen_JamaNeur_2013.pdf ] .
For more on thalamus stimulation, these [http://www.ncbi.nlm.nih.gov/pubmed/18421835]
three [http://www.ncbi.nlm.nih.gov/pubmed/10097398] papers
[http://www.nature.com/nature/journal/v448/n7153/abs/nature06041.html] are useful.
A study on Zolpidem and the use of drugs to arouse patients
[http://rtjournalonline.com/Drug_Induced_Arousal_PVS_NeuroRehabilitation_2006_Clauss.pdf ] from PVS.
Schiffs 2002 paper [http://brain.oxf ordjournals.org/content/125/6/1210.long] reporting on PET,
MRI and MEG to detect activity in the persistently vegetative brain.
The study on the dead salmon effect [http://pref rontal.org/f iles/posters/Bennett-Salmon-
2009.pdf ] .
PET vs MRI [http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60042-8/f ulltext] : the
2014 paper by Laureyss group.
The Schiff group paper [http://www.sciencedirect.com/science/article/pii/S0140673613601257]
questioning the robustness of EEG bedside detection of awareness in the
vegetative state.
Critical perspectives on the brain-scanning techniques in letters to Science from
Daniel Greenberg [http://www.sciencemag.org/content/315/5816/1221.2.f ull] and Parashkev
Nachev and Masud Husain [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2658464/] and in an
editorial in the BMJ [http://www.bmj.com/content/345/bmj.e8045] by Lynne Turner-Stokes et
al.
The Royal College of Physicians guidelines [http://www.rcplondon.ac.uk/press-
releases/prolonged-disorders-consciousness-%E2%80%93-new-rcp-guidance-help-healthcare-staff -and-
f amili] on prolonged disorders of consciousness for healthcare staff and families.
Resources
Adrian Owen [https://www.youtube.com/watch?v=lvUvY_JrUgA] and Steven Laureys
[http://www.youtube.com/watch?v=6Qqc_wJS6-Q] have both given excellent TEDx talks on
this subject, and Nicholas Schiff has given talks to Stony Brook University
[https://www.youtube.com/watch?v=YIznyWtXlK0] and to the Internatinoal Neuroethics
Society [http://vimeo.com/79158565] . Owen also did a talk on this for Poptech
[https://www.youtube.com/watch?v=Hz133pdwbOA] and you can also see him playing in the
band You Jump First [http://www.youtube.com/watch?v=OrAtFlXJI3M] .
More on Kate Bainbridges story can be found in two
[http://www.ncbi.nlm.nih.gov/pubmed/11712954] papers
[http://www.ncbi.nlm.nih.gov/pubmed/12745707] that she co-authored. You can see her story
in this video [http://www.youtube.com/watch?v=A04AvsGH0FU] .
For more on Jims story, see these news articles in the New York Times
[http://www.nytimes.com/2005/02/08/science/08coma.html?_r=0] and the Telegraph
[http://www.telegraph.co.uk/news/worldnews/1559090/Man-woken-f rom-virtual-coma-af ter-six-
years.html] .
Fergus Walshs BBC report on Scott Routley [http://www.bbc.co.uk/news/health-20268044] .
An obituary of Professor Bryan Jennett in the Independent
[http://www.independent.co.uk/news/obituaries/prof essor-bryan-jennett-neurosurgen-783069.html] , and
one of Fred Plum in Archives of Neurology [http://archneur.jamanetwork.com/article.aspx?
articleid=801682] .
22/04/2014
Added disclosure note.
Before:
N/A
After:
Disclosure: The writer and Adrian Owen have previously co-authored a paper
[http://www.cell.com/neuron/abstract/S0896-6273(12)00584-3] on human intelligence
published in Neuron.
Proof of life [/extra/proof -lif e]
Each week, patients from across Europe are wheeled in to the Coma Science
Group in Lige, united by grief, hope and desperation.
Near-death experience [/extra/near-death-experience]
Scientists are collecting stories of the near-death experiences of coma patients.
A measure of consciousness [/extra/measure-consciousness]
AMENDMENTS AND UPDATES
[#
]
EXTRAS
[#
]
Despite much thought and ingenuity, neuroscience still struggles to define what
consciousness is.
Mosaic is dedicated to publishing compelling stories that explore the science of lif e.
You can email us at mosaic@wellcome.ac.uk [mailto:mosaic@wellcome.ac.uk] , tweet
@mosaicscience [https://twitter.com/intent/tweet?user_id=1530953521] and comment on our
blog [http://blog.mosaicscience.com ] .
Except where otherwise noted, content on this site is free to reuse [/node/39] , and is licensed
under a Creative Commons Attribution 4.0 International Licence.
[http://creativecommons.org/licenses/by/4.0/deed.en_US]
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4/27/2014 The mind readers | Mosaic

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