Research into disorders of
consciousness is starting to gain pace.
In the four decades since the term ‘vegetative state’ was coined, the
last 10 years have seen a considerable increase in research, and mostly
importantly, a big leap in our understanding of these complex conditions. Work in this field is still considerably
behind that of other more prevalent neurological conditions such as epilepsy,
however, we know a lot more about these conditions and we can be optimistic that
a lot more is going to be learnt in the next few years.
The most common question
raised by families with a loved one, in one of these conditions, is what is the
situation in terms of development of treatments and interventions? A review of the literature would probably
suggest there are no empirically proven interventions at the present time. However, the answer is far more complex and
requires a little bit of explanation. On
a superficial level, it is true there are no empirically proven interventions,
such as a medicine, operation or mechanical device to facilitate recovery,
despite anecdotal reports. For instance,
the well publicised Zolpidem study was only undertaken with three patients and
to date the effects documented in just two of them, have not been seen on a
large scale. Disorders of consciousness
are however far more complex and the pursuit of a medicine to treat everyone is
widely recognised as a blind alley.
Firstly, anyone who finds themselves suffering impaired consciousness is
unique - no one will share exactly the same pathology or brain damage. Hence, the development of interventions has
got to focus on the individual and crucially on recognising what
pathophysiological events are at play.
Where for instance detailed examinations reveal a neuro-chemical
inbalance that stops parts of the brain talking to one another, a drug which is
known to tackle this can be prescribed.
Thus in some cases, where detailed investigations have revealed the
pathophysiology that Zolpidem may address, it is appropriate and may work.
Concurrent research is
therefore predominately focused upon identifying the pathophysiology underlying
someones impaired consciousness and giving a person the opportunity to show what
they can and cannot do. In many cases it
is not about discovering a new drug, but rather careful and planned management
on the basis of the detailed examination.
In this instance the best example that can be given is that of the 23
year old lady featured in a widely publicised study by the Cambridge Impaired
Consciousness Research Group in 2006.
This young lady had suffered a traumatic brain injury after she had been
knocked down by a car. At the time the
research group investigated her, six months after the accident, it all looked
very bleak. Behaviourally she showed no
meaningful response to any command.
However, careful examination by the research group, using a combination
of behavioural tests, electrophysiology and brain imaging, revealed she was in
fact aware and able to understand speech.
Having identified this, the group undertook numerous assessments to
determine why she was unable to move or speak.
They subsequently found that she needed an operation to control the
pressure in her brain and that she needed some adjustments in her anti-epileptic
medication to control seizures. As
interventions to address these issues were put in place, this lady gradually
started to recover. This didn’t happen
over night, but four years later this lady is able to feed herself, converse and
interact with her family and walk with assistance. This young lady didn’t have any new drug or
intervention, but rather access to assessments, which guided her doctors to make
important decisions on how to treat her.
In essence the above story
summarises the current attitude in many areas towards these conditions. The focus is upon developing new tests which;
(a) identify the pathophysiology or damage underlying the disorder of
consciousness in an individual, and (b) give that person every opportunity to
demonstrate what they can do in the face of these circumstances, which the
doctors can then try to harness. This is
certainly the approach favoured by the University of
Cambridge, which has hit the headlines several times with the work
it is doing in this area. Their belief
is that everyone who finds themselves in one of these conditions should be
investigated thoroughly to identify the underlying causes and identify their
residual abilities. In a large number of
cases these investigations may suggest the damage to the brain is so severe that
nothing can be done to help that person.
However, in others it may equally identify retained abilities that can be
harnessed through common sense approaches - not wonder drugs - to give that
person some improvement in quality of life.
We all sadly recognise that disorders of consciousness are the result of
very severe levels of damage to the brain, which in a large number of cases are
so severe; doctors can do no more than make someone comfortable. However, in those small number of cases,
where detailed investigations have identified residual function, we should be
putting all our effort into harnessing this residual function. The University of
Cambridge and other research groups around the world are therefore
putting most of their efforts into designing tests that accurately reveal these
attributes. The emphasis should
therefore be on ensuring everyone is investigated in detail and we understand
what underlies their condition.
It is a sad fact that in the
United Kingdom and elsewhere in the world, there are
not the facilities or services available that there should be for anyone
suffering a disorder of consciousness.
There are only a handful of specialist units, with the Royal Hospital for Neurodisability in London having the most developed service and the greatest concentration of
staff with specialist skills. Sadly many
people suffering a disorder of consciousness are never seen by someone with
specialist skills in this area, nor are they investigated thoroughly. This is unacceptable and thus together we
have got to campaign for either the establishment of a number of specialist
centres across the UK that see everyone with a disorder of consciousness, or
more widespread training for staff across the NHS. The most important thing we need is a
national standard so that everyone can expect the same level of investigation
If you would like to learn
more about the research work being undertaken at the University of Cambridge their website provides further
information and copies of their manuscripts.
Similarly you can contact the research team directly or ask questions via
this websites forum, which members of their team have agreed to answer.
University of Cambridge Impaired Consciousness