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Breaking the Silence |
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DEAL works with people who have been diagnosed as being in persistent and permanent vegetative state (PVS) The most important thing to know about PVS is
that it probably doesn't exist. "By
definition, patients in a persistent vegetative state are unaware of
themselves or their environment. They are
noncognitive, nonsentient, and incapable of conscious experience.
" Nonsense. This belief closes off any road into the
condition through communication. This is a
serious matter. If people do not communicate awareness, why
do we not begin from the standpoint that this a deficit in
communication, rather than leaping to a conclusion that there is a
deficit in awareness -- a conclusion that should only be reached, if at
all, when all other explanations have been exhausted? We
should in the first instance attempt to remedy communication problems
and only then decide whether awareness is irrecoverable. Where the criteria state that persistent
vegetative
state may be diagnosed if no evidence is shown of "sustained,
reproducible, purposeful, or voluntary behavioural responses to visual,
auditory, tactile, or noxious stimuli" therapists know that there
are a number of problems with these requirements. "The ability to
generate a behavioural response fluctuates from day to day and hour to
hour, and even minute to minute, depending on fatigue factors, general
health of the patient and the underlying neurological condition." It
takes considerable skill in getting
them into the optimal condition to be able to communicate. Many
patients who are misdiagnosed as being in the vegetative state are
blind
or have severe visual handicap; thus lack of eye blink to threat or
absence of visual tracking are not reliable signs for diagnosing the
vegetative state. The
list of things that might interfere with communication includes such
factors as
contractures, medication, motivation, depression, fatigue, position,
long- and short-term changes in muscle tone, and stress -- stress that
would be maximised in test situations where the patient is asked to
perform on command (as in Alice in Wonderland -- "Give your evidence,"
said the King; "and don't be nervous, or I'll have you executed on the
spot.") Dyspraxia, the condition where one
is able to
perform a movement only on condition that one doesn't think about it,
is also a recognised hazard in AAC. Given the uncertainties
inherent in the
diagnosis of persistent vegetative state, AAC
intervention should
precede diagnosis rather than vice versa. Indeed,
intervention aimed at establishing communication should be mandatory
for this population, as non-speech communication strategies now
available may be able to make use of controlled movements not evident
at a traditional neurological examination. Andrews et al report that in
their unit "the patient's awareness is nearly always identified first
by the occupational therapists ... and only later is communication
achieved by the other members of the team" and relate this to the
patients' severe physical impairments and the need for appropriate
positioning and adaptive equipment to elicit responses. Everyone who has been diagnosed as
being in a persistent vegetative state, no matter how long ago the
diagnosis was made, should have a non-speech communication assessment given by a
specialist multi-disciplinary team. These topics are covered in
more detail here.
Or give DEAL a call. |
| DEAL
Communication Centre Inc., 538 Dandenong Road, Caulfield, Victoria 3162, AUSTRALIA Ph. (61-3) 9509 6324 Fax. (61-3) 9509 6321 e-mail: dealcc@deal.org.au |
DEAL
has now seen over 2,000 clients with diagnoses that include Autism/ASD, Cerebral Palsy, Down Syndrome, Intellectual Impairment, Learning Disability, Fragile X Syndrome, Rett Syndrome, Stroke/CVA, Persistent/Permanent Vegetative State, Acquired Brain Damage, Motor Neurone Disease/ALS, and Huntington's Disease. DEAL has been able to help people with all of these diagnoses to communicate. |