“On one occasion I found her lying flat with a deflated tracheotomy cuff. She
was blue in the face and having difficulty breathing.”
Other instances of poor care, Colin claims, involved a catheter bag
infrequently changed, and a gastric tube not replaced routinely according to
clinical guidelines. He also contends that Christine was prematurely
discharged from intensive care as a result of the PVS misdiagnosis. His
formal petition that the hospital has not done enough to resolve his
complaints was upheld by the Healthcare Commission on November 9.
Christine, now in a private neurological rehabilitation centre, is locked in
rather than “vegetative”: she is conscious but can only communicate by
moving her eyes up and down – up for “no”, down for “yes”. The sections of
her motor cortex responsible for action have been affected, but not her
understanding, reasoning or consciousness. Colin says that in his view a
proper diagnosis was not made, nor appropriate treatment devised, until
after a visit from a member of a Cambridge brain-research team.
The Cambridge initiative, which began with the experiment performed by Owen on
Kate Bainbridge at Addenbrooke’s in 1998, is a story of remarkable
determination and painstaking science. Owen is a high-tech neuroscientist
funded by the Medical Research Council. Stooped and mildly self-deprecating,
he is a youthful-looking 40-year-old raised in Gravesend. His hipster
scrubby beard and pleasant, laid-back estuarese confirm a passion for rock
music (he leads a band called, improbably, You Jump First). Like a voyager
in a parallel universe, he has been travelling along those strange cortical
frontiers where consciousness, language and perception emerge from our
hundred-billion brain cells and their trillions of connections. He and a
group of colleagues – a professor of neurosurgery, a professor of
anaesthesiology and an experimental psychologist – have been collaborating
on innovative diagnostic techniques for brain-damaged patients. There’s the
soberly suited “Prof” – John Pickard, a brain surgeon, who manages the
delicate task of bringing the experimental science and suffering patients
together in a single project. It was Pickard who sited a scanning machine
immediately next to the neurological intensive-care unit in his hospital,
making it available for both diagnosis and research. Then there’s David
Menon, originally from Pondicherry, India – who designs tests for levels of
human consciousness using anaesthetics. Menon carries out volunteer trials,
using anaesthetic sedation to study mental tasks that can be located to
specific brain centres that might, or might not, be affected by injury –
accidents, stroke, cardiac arrest or drowning.
Then there’s Martin Coleman – the earnest youngster of the squad, with a
monk-like aura and a compulsive capacity for detailed diagnosis combining
observation and neuro-imaging. He is creating a standardised assessment
strategy for the variety of states of awareness that follow brain injury.
“I’ll sit for hours,” he says, “watching a patient to see how he or she
responds, however slightly or momentarily, to different kinds of noise and
atmosphere: a footfall in the corridor, a shaft of light. But the scanning
evidence is also crucial. The more I work on these patients, the more I
realise each one is unique because their brain injuries are unique.” The
team, which calls itself the Impaired Consciousness Study Group and works
out of the Wolfson Brain Imaging Centre at Addenbrooke’s hospital, has been
looking for, and finding, “islands of significant awareness” in people
thought to be “vegetative”. “We can actually see on the scanner,” says Owen,
“why certain patients aren’t responding to aural stimuli. We can see if the
auditory pathways have been disrupted. We can see that they’re deaf, or it
might be we can see they are blind, even though they can’t tell us.”
Crucially, the team has done ground-breaking work, using scanners, on the
presence of acute pain in minimally conscious patients. This should enable
clinicians one day to administer appropriate analgesics after diagnosing
pain in uncommunicative patients.
It all began for Owen in the mid-1990s, the so-called “decade of the brain”,
after neuroscience had taken off with the aid of genetics, molecular and
cell biology, huge new computer capacity, and – above all – non-invasive
scanners. For the brain scientists, the advent in the 1980s of Pet-scan
(positron emission tomography) technology (less rapid than MRI but
nevertheless detailed in locating brain blood flow) was as historically
dramatic as the invention of the telescope. The difference is that the gaze
of discovery could now be turned inwards instead of outwards. Up to this
point, the mind-brain link had been dominated by behavioural psychologists
who assessed “input” of stimuli and “output” of behaviour, treating the
interior of the brain as an unknowable dark continent. The first discovery
of speech-centre activation in the brain, with the aid of a scanner, took
place in 1988. With scanner technology it was now possible to penetrate the
interior of the brain without “murdering”, as William Blake would say, “what
we dissect”.
At Addenbrooke’s, Owen was granted permission in 1997 to scan the brain of
Kate Bainbridge, an infant-school teacher with a first-class degree in
history from Southampton University. Today, Kate is a happy and healthy
woman with a lovely mop of wavy hair and highly intelligent eyes, who is
full of life even if challenged physically. She has reshaped and reasserted
her highly imaginative personality through, and despite, her brain injury.
It is hard to imagine the devastation of her mind and body 10 years ago.
Kate had contracted a condition known as ADEM (acute disseminated
encephalomyelitis), an unusual form of inflammation of the brain. A viral
infection had resulted in an abnormal immune response: her antibodies had
attacked her brain cells, treating them as invaders. After descending into
coma, she was placed in the Addenbrooke’s neurosurgical intensive-care unit,
where she lay for four months, dead to the world. Eventually came periods
when she seemed to be awake but unresponsive to stimulation. She was
diagnosed as in a “persistent vegetative state”.
Vegetative state and minimal-conscious state are different from brain death,
which involves the total destruction of all brain areas and the consequent
collapse of heart-lung function. They are different, too, from classic
“locked-in state”, such as Christine Simpson’s, where a precise area of the
motor cortex is affected, leaving the rest of the brain unharmed. If a
vegetative state lasts for more than three months (longer in certain forms
of brain insult), there is thought to be progressively less chance that the
patient will return to even minimal consciousness.
A PVS diagnosis invariably means transfer from intensive care to a hospital
ward, where the patient’s basic physical needs are looked after by staff
untrained in rehabilitation techniques. From there they will go on to a
long-stay care home. It has been known for relatives of such patients to
apply to a judge for withdrawal of feeding to induce death – as with Tony
Bland, the 18-year-old victim of the 1989 Hillsborough football-stand
collapse, who was left permanently unconscious yet breathing independently.
Nine judges ruled that it would be humane to withdraw Tony’s feeding tube so
he be allowed to die. About 20 patients diagnosed as in a PVS have had their
feeding withdrawn in Britain since 1992, when the Bland decision was taken.
Such requests, often made by relatives whose lives are on hold, their
grieving in suspension, are increasingly controversial. There have been
tales of patients, not unlike Kate and Christine, returning from “the dead”
after months and even years, as well as accounts of sudden recuperation
following vigorous massage, deep brain stimulation, and even the
administration of sedatives. Members of the Cambridge team, as well as
specialists at the Putney hospital, point out that these “Snow White”
examples have as yet no reliable supporting scientific evidence that would
lead to a routine diagnostic or treatment strategy.
Adrian Owen’s first experiment on Kate involved presenting her with
photographs of her mother and father, followed by fuzzy, meaningless
pictures, while her brain was being scanned. “We found,” he says, “that
areas of Kate’s brain burst into activity when pics of her family were shown
that accorded perfectly with the brain locations of healthy volunteers doing
the same task.”
This did not necessarily mean that she was fully conscious. It has been
established by David Menon’s research that an anaesthetised patient’s brain
can respond to certain stimuli without being actually aware. But Owen’s
first experiment revealed that Kate’s brain was not entirely devastated:
there were islands of activation. In fact, Kate has no memory now of seeing
the pictures. And as she returned to consciousness, she remembers people
speaking without understanding what they were saying. The first words she
understood as meaningful words, and not just noise, were spoken by her
mother. Kate remained in hospital for a further six months, returning
gradually to responsiveness in fits and starts. The scan had given her
parents and the medical staff confidence that her brain might begin to heal
itself slowly with systematic stimuli. They were right.
