Permanent Vegetative State: Usefulness and
limits of a prognostic definition
C. J. Borthwick & R. Crossley
DEAL Communication Centre,
538 Dandenong Road,
E. Malvern, Vic. 3162
Australia
Abstract Jennett
and Plum's 1972 naming of post-coma unresponsiveness as "persistent
vegetative state (PVS)" characterised the condition as essentially
irrecoverable and insentient. The evidence for these propositions was
always weak, and they have been largely disproved by more recent
research. Nonetheless, the definition and the attitudes it embodies
remain generally accepted, resting as they do on a firm foundation of
medical attitudes to disability and a public willingness to evade
uncomfortable facts. The first step in altering our approach to people
with this form of communication impairment must be to rectify our
understanding of the terminology.
"If names be not correct,
language is not in accordance with the truth of things. If language be
not in accordance with the truth of things, affairs cannot be carried
on to success"
The Analects of Confucius, Book 13, Verse 3
The Multi-Society Task Force on PVS (1994)
[22] lists as among the criteria for the persistent vegetative state
"Bowel and bladder incontinence". The
Royal College of Physicians (1996) lists as among its criteria for the
same condition "Incontinence of bladder and bowel" [26]. Given
that the other criteria for the vegetative state include absence of
voluntary movement, and thus inability to walk to the toilet, and
absence of communication, and thus inability to ask for a bedpan, this
is self-evidently fatuous.
It is also, of course, unhelpful, in that it
is unlikely ever to be employed in practice. Clinicians do not stand
around a hospital bed saying to each other "No evidence of awareness,
check." "No evidence of purposive
movement, check." "Intermittent wakefulness, check." "But is he
incontinent? We'd
better wait a few hours, just to be certain." To
be unhelpful, however, is not necessarily to be uninformative; and any
attempt to explain the inclusion of loss of these bodily functions in
the indicators for consideration of the withdrawal of nutrition and
hydration must lead to the conclusion that there is an element of bad
faith built into the definition of the vegetative state.
By the use of the term "bad faith" I do not
wish to imply any deliberate attempt to deceive -- rather, I would
suggest that the function of the definition is less to discriminate
between conditions than it is to lend scientific authority to
judgements previously made on other grounds; that is, the list of
criteria has been designed to give verisimilitude to an otherwise bald
and unconvincing narration.
The use of terms of agency and motivation in
such phrases as "has been designed' can easily drift into a mild form
of conspiracy theory. My contention is,
rather, that professionals, being human, tend to believe more easily in
propositions that ease their difficulties, diminish their distress, and
increase their authority, and tend to reserve close examination for
propositions that stand the way of any of these desirable outcomes; and
that these tendencies shape the response of the profession en masse.
To establish the nature of the judgements
that the definition operates to validate it is helpful to return to the
time of its origin.
Jennett and Plum believed in 1972 [19] that
an increased number of patients with
devastating brain damage resulting from such insults as head trauma,
brainstem stroke, or hypoxia - conditions that would previously have
resulted in rapid death - were surviving in a state that was no
longer coma but was not recovery. These
patients showed "wakefulness without awareness", and no evidence of a
conscious mind. Jennett and Plum saw this
situation as creating a need for a new term: Persistent
Vegetative State.
Jennett and Plum were "concerned to identify an irrecoverable state...". While in 1972 "the criteria needed to
establish that prediction [of irrecoverability] reliably have still to
be confirmed", they anticipated that research would soon fill this gap:
"Exactly how long such a state must persist before it can be
confidently declared permanent will have to be determined by careful
prospective studies." [19]
The Jennett and Plum formulation of
Persistent Vegetative State is thus both a prognostic and a
retrospective definition. There are no
clear criteria that will at any given moment distinguish patients who
have it from patients who do not. The only
means, then and now, to distinguish people with persistent vegetative
state from people with merely transient vegetative state is to observe
them and see whether their vegetative state persists; the longer it
persists, the higher the probability that it will continue.
Jennett and Plum downplayed the difficulties
of definitively establishing lack of awareness and gave no consideration to the possibility of
misdiagnosis. Their opinions hardened over the succeeding
years, and at least by the time the formulation was tightened in Plum
and Posner's The Diagnosis of Stupor and Coma (1982) [24] persistent vegetative state was
seen as essentially immutable, insentient, incurable, and unmistakeable.
[6]
From that time on, both those who agreed with
Jennett and Plum over the moral issues involved and those who
wholeheartedly disagreed with them phrased the terms of their dispute
within the bounds of these qualities of immutability, insentience,
incurability, and clarity. Indeed, the
concept of persistent vegetative state was accepted across medico-legal
society with such enthusiasm that it is difficult in retrospect to say
whether Jennett and Plum launched an idea into the culture or embodied
an already existing archetype. Doctors,
ethicists, philosophers, theologians, and lawyers, each for their own
reasons, adopted this counter into their discourse.
The attractions of the concept are obvious. For one thing, it allows us to avoid the
contemplation of conscious unhappiness. For another, persistent
vegetative state being immutable, insentient, incurable, and
unmistakeable, involves no elements of uncertainty, and doctors, quite
naturally, prefer to have more certainty rather than less, a point
illustrated by a comment from the chairman of
the BMA Medical Ethics committee that "the atmosphere in which doctors
make decisions is even more stressful if they are uncertain whether
their decisions are correct, and that is what we are trying to put
right." [4]
The three words "persistent vegetative state'
are attractive also to such groups as ethicists and lawyers because, it
is thought, they exhaust all the morally significant information about
any case in which they occur, and any person may thus participate in
any discussion of any such case on an equal footing, without the need
to examine any particular circumstances.
The power of such a hard-edged concept to
redraw fuzzy boundaries and eliminate grey areas can be seen in the
successive judgements in the precedent-setting Bland case, where the
words of the judge of first instance (Brown J.)
Professor
Jennett [in his evidence] .... concluded .... that only exceptional
cases have been reported as showing recovery after a year.....[2].
became in the judgement of the appeals court (Hoffmann J )
It is necessary to emphasise the
awful certainty of his fate. We all know of
cases in which doctors have been mistaken and where people have
recovered to live meaningful lives after being given over for dead. But no one has ever recovered any vestige of
consciousness after being in a persistent vegetative state for more
than a year. [1]
"Only exceptional cases" are not the same
thing as "no one", but any discussion of persistent vegetative state
tends to gravitate inexorably to absolutes.
As the citation of Brown J. makes clear,
Jennett's own position does not now rely on absolute
irrecoverability. Rather, he is currently of the opinion that
Insistence on certainty beyond a
reasonable point can handicap the physician dealing with treatment
options in apparently hopeless cases. The
rare report of a patient with a similar condition who survived is not
an over-riding reason to continue aggressive treatment. Such
negligible statistical possibilities do not outweigh the reasonable
expectations of outcome that will guide treatment decisions.....[12].
This position, however, does not
seem to sit well with either judges or ethicists, who demand exactly
that certainty that Jennett dismisses -- an assurance that the
diagnosis of persistent vegetative state involves one and only one
prognosis -- and read this certainty into any formulation that permits
it.
The term "persistent vegetative state' has
indeed taken such firm hold that it has resisted subsequent attempts by
its originators to revise it. In his
recent book "The Vegetative State" Jennett adopts the usage of the
Royal College of Physicians (RCP) (1996) and refers only to the
"vegetative state', the "continuing vegetative state', and the
"permanent vegetative state'. The term "persistent vegetative state"
has certainly largely fallen out of use among neurologists. Nonetheless,
less informed areas - the press[1],
the law[2],
medical literature[3],
Hollywood[4],
many clinicians, and the public in general -- continue to use the older
term. A speech by Pope
John Paul II [20], for example, studiously avoided the use of any term
other than "vegetative state'; 40 out of 61 references to the speech on
Google (6/5/04) nonetheless used the term "persistent vegetative state',
(and only four used "permanent vegetative state' -- a term that has in fact had almost no success in making
its way into lay, as opposed to neurological, usage, a failure that
supports the view that the public already interpret "persistent' as in
this context meaning "permanent'). It is
for these reasons that the terminology is adopted here.
This platonic conception means
that believers can also avert their eyes from the way in which diagnoses
of persistent vegetative state are generally made in the real
world. Despite what one might think from the time devoted to it
in the media, persistent vegetative state is an extremely low-incidence
disease;
Information from several studies
suggest that the incidence of the Vegetative State is about
0.7-1.1/100,000 population..... Prevalence figures from throughout
the world suggest that between 2-10/100,000 of the population are
Vegetative [26].
If admission to care was evenly
distributed (as it is not) then each American hospital would thus have
new persistent vegetative state cases at a rate of one to two every
three years, and every physician (assuming ten physicians attend each
persistent vegetative state patient) one every 25-30 years (obviously,
persistent vegetative state cases tend to group in large hospitals with
emergency departments, but this must also mean that the median contact
rate for both physicians and hospitals is considerably lower).
This does not make it easy to
build expertise with these patients, particularly as their varying
presentations require some time to master. Wade, the author of a
practice guide to persistent vegetative state, said in answer to a query
on the misdiagnosis/recovery rate his patients that "My own experience
is only of about 30 cases, and only followed for about five years at
most, insufficient to draw any sound conclusions [31]" If
the standard is as high as this, or higher, very few people indeed can
claim expertise. Many diagnoses of
persistent vegetative state will in any case continue to be made by
people who know it only from textbooks. Andrew Grubb, Professor of
Medical Law at the University of Wales and author of a recent study, has
said [11]: "What we did discover is that relatively few doctors who
were likely to have seen patients in this condition, had seen many
patients in this condition. A fair proportion had seen one or two, but
very few had seen more than, say five. And.... there is, I think, a
strong suggestion that the nature of this condition means that it's
better diagnosed through experience."
The words "five years at most"
in Wade's earlier comment draw attention to another difficulty; most
doctors who have seen several cases of vegetative state will have seen
them in the early stages when their case was being pursued intensively,
and very few indeed will have followed the progress of their patients
even over the next year when they are introduced to therapy or simply
reduced to care and maintenance. Any statements they make about
prognosis will at best be based on one of the consensus statements such
as that of the Multi-Society Task Force and at worst will be drawn from
the same stock of misconceptions as is held by the society at large. persistent vegetative state, like other
conditions such as mental retardation or autism, takes its meaning from
how it is used in the world.
A yet further issue is that
medical systems do not place any great emphasis on revisiting or
reviewing diagnoses over time, even where such diagnoses are not, as
here, expressed in terms of certitude and irreversibility. Keen
attention may be paid in the early months to signs of developing
communication, but once a diagnosis of persistent vegetative state has
been arrived at the bar tends to be raised considerably. I have
myself been involved in several cases where people originally diagnosed
as being in persistent vegetative state have recovered speech [9], and
one patient at least had some difficulty convincing her medical
practitioners of her recovery of sentience even when speaking to them
over the telephone.
In view of these factors one
should not be surprised that many surveys have found that a considerable
proportion of people carrying diagnoses of persistent vegetative state
can be declared misdiagnosed after a relatively cursory examination
(see, for example, Tresch et al, 1991 [30]). Ethicists who say
such things as "To the best
medical knowledge when properly diagnosed, such a condition is
irreversible.... the patient will not return to any level of sapient or
sentient existence.....[29]" rely on the use of weasel words such as "properly
diagnosed" to imply that cases of misdiagnosis are
really nothing to do with the central issue when in fact such errors are
both predictable and inevitable. It is as if there were two
identical and indistinguishable species of mushrooms, one of which was
delicious and the other fatal; to say "Provided you choose the
delicious variety, you are absolutely safe' would be true but would
also be recklessly misleading.
The almost universal acceptance of Jennett
and Plum's definition, and of the approach it embodies, has made it
difficult to remember that this approach was not inevitable. There were a number of alternative routes open
to them. They could have sought for ways
to uncover consciousness where it conceivably lay hidden, or they could
have sought out the treatments that were associated with the then rare
instances of recovery and sought to build on them, or they could have
simply presented the issues, raised the questions, and left it to
future research to confirm or deny their hypotheses.
None of these approaches, to be sure, would
have solved the problem as they saw it, which was that doctors had to
make predictions and decisions immediately, before any further research
was done. More specifically, Jennett and
Plum believed that it was from time to time desirable to allow such
cases to die. Being men of their time, they believed that resources
were limited, the death of a person with a severe disability was not a
matter for any great sadness, and that the person best fitted to make
life and death decisions of this kind was a medical practitioner. This being so, they sought a way for a
doctor to be able to say definitively that further treatment would be
futile and to have his opinion accepted without any time-wasting
arguments; and they took a short cut to certainty.
They made the assumption that future research
would fill in the gaps that they had noted in their argument, and that
this research would confirm their speculation. They
assumed, too, that there were no other aspects of brain function, not
yet identified, of which they were ignorant. In
the words of Donald Rumsfeld, they assumed that there were known
unknowns, but no unknown unknowns. On the
basis of these assumptions they built into the definition of persistent
vegetative state the necessary conditions for unfettered medical
autonomy.
Jennett and Plum's conclusions fitted snugly
into the prevailing medical culture, which also by and large saw the
fundamental problem with people surviving in a semi-comatose state not
as their being in a semi-comatose state but as their surviving at all. Resources, it was felt, were being wasted on
people who would never recover and who would be unlikely to contribute
to the national wealth. Jennett himself
passionately believed that patients in persistent vegetative state
placed a strain on limited resources, and that physicians who care for
them "sound ... a death knell for those who are denied the benefits of
appropriate care by [this] spendthrift attitude. [17]"
Jennett and Plum apparently
believed that the number of people requiring long-term total care had
increased, was increasing, and needed to be diminished. I
should comment parenthetically that Jennett and Plum asserted this
growth in cases of persistent vegetative state but did not document it,
and no reliable survey has since been done to establish it.
Jennett and Plum are in the
position of a Virginian settler who in 1650 notes that there have in a
community of a thousand inhabitants been five deaths from native
American attack in the past year in the thirty miles abutting on to the
township, and on that basis calculates that when America has been
extended to the Pacific three thousand miles away the number of yearly
deaths will be five hundred per thousand head of population. The
flaw in this calculation is that it is the frontier that is liable to
such casualties, and the frontier moves forward on both sides, taking
land from the native Americans on one side and converting it into safer
settled land on the other. Similarly,
Jennett and Plum's approach to coma treatment rests, I believe, on a
misconceived idea of how medical science works. It is not usually
the case that a new medical advance creates for any extended period a
larger number of people surviving with disability. I would suggest that
the pattern is that medical advances shift the border of normal practice
into new areas but maintain a roughly constant area of disputed
borderland -- that more underweight babies, for example, are saved from
disability by improved techniques, emboldening doctors to attempt to
save still lighter and earlier births at higher risk, leaving the total
number of babies born with disabilities largely unaltered.
Jennett's attitude to the use of finite
medical resources may have been reinforced by the fact that many people
have strong feelings about the undesirability of disability. When
Professor Andrews of England's Royal Hospital for Neurodisability
reported a study finding that 75% of the patients presenting with
diagnoses of persistent vegetative state were eventually able to
communicate [3]
the publication of this article in the British Medical Journal was
accompanied by an editorial by Ronald Cranford that said ".... all 17
patients who were found to be conscious were severely
disabled; .... I would speculate that most people would find this
condition far more horrifying than the vegetative
state itself, and some might think it an even stronger reason
for stopping treatment than
complete unconsciousness.[8]"
Some, myself included, might think that Dr.
Cranford's opinion on stopping treatment was rather less significant
than the opinion of the 17 patients with whom communication had been
established. He, however, was a member of
the Multi-Society Task Force and they were not, which may help to
account for its stealthy expansion of the Jennett definitional
criteria.
a persistent vegetative state becomes
permanent .... when a physician can tell the patient's family .... with
a high degree of medical certainty that there is no further hope for
recovery of consciousness or that, if consciousness were recovered,
the patient would be left severely disabled.[emphasis mine] [22]
If this prejudice represented a
misdirection or a perversion of the general will, to expose it would
suffice to correct it. This seems,
however, unlikely. I would suggest that our society simply wants the
problem to go away, and believes whatever serves this end. Such a hypothesis would go some
way to explaining why the research of Professor Andrews has had so much
less impact than the speculations of Jennett and Plumb.
Such research has now established virtually
beyond cavil that the diagnosis of persistent vegetative state is
liable to considerable error. Depending on
the intensity of the examination, combined error and misdiagnosis rates
in different studies have ranged from 15% [17] to 75% [18] the latter figure
being one that should have exploded the notion of irreversibility
altogether. This has not happened, and it
is difficult to account for this inaction except under the hypothesis
that projected irrecoverability was never as important an element of
the concept as was present inconvenience. One
might compare Aesop's fable of The Wolf and the Lamb. The
wolf says to the lamb "I'm going to eat you because you're fouling my
water", and the lamb points out it is drinking downstream; the wolf
says "I'm going to eat you because you called me bad names last year",
and the lamb points out that it was only born this year; the wolf says
"Well, if it wasn't you, it was your father" and eats it. When
a belief survives the conclusive disproof of the assumptions on which
it supposedly rests, it is reasonable to suggest that it rests on other
assumptions that cannot be so openly avowed.
One test of that suggestion is to see how
Jennett responded to research that raised the possibility of emergence
from persistent vegetative state. We find
that when Andrews
originally reported on evidence of recovery from persistent vegetative
state Jennett's first response was to complain that Andrew's paper
might "reverse the trend towards compassionate withdrawal of life
support, measures that have hitherto seemed a reasonable response to
the ethical dilemma....[14]". That
is to say, if the demonstration of consciousness was incompatible with
termination of the persistent vegetative state patient then it was the
demonstration, not the termination, that should be discouraged.
If, then, the medical consensus
on the appropriate treatment for people with post-coma wakefulness rests
not on such characteristics as assumed irrecoverability (which can be
refuted) but on such characteristics as their cost and trouble (which
are undeniable), what point is there, then, in raising such issues as
the misdiagnosis and/or recovery rates at all?
If it was possible to prise open
the jaws of the definition, we might as a minimum establish protocols
for the treatment of people diagnosed as being in persistent vegetative
state that would spare them the horrors of being operated on without
anaesthetic ("the
PVS patient may 'react' to painful stimuli, but he or she does not
'feel' pain in the sense of conscious discomfort of the kind that
doctors would be obliged to treat...."[21]) or being starved to death
over a period of weeks[5]
or, in unpractised hands, months (for letting die, too, is a specialist
skill).
If the issue was able to be
discussed without subterfuge, we might even work our way towards a
positive alternative -- one that could allay society's fear of
disability without eliminating the people with disabilities.
The first step, however, must be to correct
the defects of the present terminology. The term persistent vegetative
state has been booby-trapped from the outset, and it is almost
impossible for patient advocates to use it without self-contradiction.
It is as if there was in the courtroom no neutral term for "defendant',
and the lawyer for the defence had to refer to his client as "the
guilty party'. Using the term concedes the
accusation and decides the case. "This PVS patient may be able to
communicate" is equivalent to saying that "This criminal is innocent" or
even "This triangle has four sides". We cannot reach a solution to the
problems of treating post-coma patients while we retain the terminology of persistent
vegetative state. The term "persistent
vegetative state' contains within itself the refutation of any
objections we might make.
Practical consequences
follow. If the problem is seen as the survival of unwanted people
then other situations that differ from persistent vegetative state on
such medical indices as consciousness but resemble PVS in presenting
the same management problem are easily brought into the same discourse
and gravitate easily to the same range of solutions and the same
systematic euphemisms. This process can be seen in operation in
legal terms in the recent English case of Re D [25], where the actions previously
approved in cases of uncontested persistent vegetative state were seen
as appropriate also to a case where "one paragraph of the guidelines had
not been fulfilled".
The recent identification of
"the minimally conscious state' (MCS) may also prove a means of
extending the ambit of persistent vegetative state rather than limiting
it. "Minimally conscious' patients "demonstrate discernible
behavioral evidence of consciousness but remain unable
to reproduce this behavior consistently' [12], and it can reliably be assumed
that any comments made about the possibility of diagnostic error or the
probability of recovery in persistent vegetative state will apply a
fortiori to
patients in MCS. If, however, MCS is seen as further restricting the
boundaries of "real' consciousness rather than as drawing more strictly
the boundaries of persistent vegetative state then these patients will
have less rather than more chance of attracting appropriate therapy.
Jennett, for example, feels that
As
medical knowledge about the diagnosis and prognosis of the minimally
conscious state increases and becomes more widely known, it seems
likely that the law may come to accept that it may be in the best
interests of some such patients to have life-sustaining treatment
withdrawn. [15]
If it was possible to wind back the clock to
1972, we could ask whether the world would have been better off if the
term persistent vegetative state had never been coined. If
people who had emerged from coma but not yet demonstrated awareness had
been referred to in later literature as "people who have emerged from
coma but not yet demonstrated awareness' we may well have had more
freedom to consider all possible routes out of the difficulties
presented by the situation. The recent proposal from the Australian
National Health and Medical Research Council [23] to refer to
vegetative state as "Post-Coma
Unresponsiveness (Vegetative State)' is a step in this direction[6].
Indeed, as the misdiagnosis/recovery rate of
people diagnosed as being in persistent vegetative state is between 17%
and 75%, it is at least as true to say of a randomly selected patient
diagnosed as having persistent vegetative state (or "post-coma
unresponsiveness') that he or she is conscious but locked in to a
generally unresponding body as it is to say that he or she has
persistent vegetative state, with all that entails.
The term "locked-in syndrome' (LIS) is now
usually applied only to patients who become unable to speak or move as
the result of certain rare cerebro-vascular accidents involving the
brainstem. The appearance of patients with
locked-in syndrome is similar to those diagnosed as being in persistent
vegetative state, except that the former may be able to control
vertical eye movements or blink. If all patients who have emerged from coma and are
unable to speak or move reliably were treated as being in the same
category as people diagnosed with LIS -- if, that is, the default
setting for diagnosis was consciousness rather than unconsciousness --
it would certainly appear from the statistics that we would make fewer
mistakes.
Such a change may in fact have a concrete
effect on the quality of hospital care and thus on survival . Survival rates in LIS are many times that in
persistent vegetative state (five year survival rate in LIS, 83% [10]
five year survival rate in persistent vegetative state, somewhere
between 5% and 50% [18] depending on whether the population is sampled
at the time of the trauma or the declaration of permanence). This difference in outcomes exists despite the
close similarity in the physical manifestations of the two conditions
(and in their resource costs -- costs which do not, for some reason,
seem to arouse any clamour for the termination of LIS patients).
In part the difference in survival rates is
obviously due to a greater number of deliberate terminations of
patients diagnosed as persistent vegetative state: it is also probable,
though, that the average standard of nursing care provided for people
who are believed to be unable to appreciate attention and are known to
be unable to complain about neglect is less than that provided to
people who are thought able to feel and communicate. Jennett himself
identified labelling as a relevant clinical variable: "There is no
doubt that the label PVS in the first few weeks after a brain insult
can result in suboptimal rehabilitation efforts at a stage when active
treatment is important, because recovery is still possible."[16]. Is it not also probable, then, that having that
label in the months and years after a brain insult -- that having that
label for anybody, ever - also results in suboptimal rehabilitation?
A move in this direction would have the
virtue of liberating us from the fundamental rigidity of the definition
of persistent vegetative state -- the belief, inherent in the term,
that prognosis is dependent on the nature of the trauma and not on the
nature of the treatment, that the problem is entirely in the skull and
not at all in the hospital.
Jennett and Plum closed off a number of
avenues of research by making the question one of the intrinsic
composition of the patient, a decision that has largely determined the
attitude of the field since. If a patient was in persistent vegetative
state they would not recover consciousness; if they were not, they
might; it was a matter of the physical state of the brain on day one,
not of anything that the hospital might do. To
use another analogy, it is as if a cookery book were to divide egg
dishes into two groups - soufflŽs (which always rose) and scrambled eggs
(which never rose) purely by a chemical analysis of the ingredients of
each (more or less salt, larger or smaller eggs, cracked at the big or
the small end) rather than by looking at the procedures of baking or
frying.
We need not only to change the name of
persistent vegetative state but to recast its nature completely. The
most serious effect of belief in the absolute nature of persistent
vegetative state is that it carries the implication that, in the words
of the Multi-Society Task Force, "By
definition, patients in a persistent vegetative state are unaware of
themselves or their environment. They are
noncognitive, nonsentient, and incapable of conscious experience. [22]"
This belief closes off any road into the
condition through communication. This is a
serious matter. After all, an entire
discipline has sprung into existence since Jennett and Plum first used
the term persistent vegetative state -- the field of Augmentative and
Alternative Communication, or AAC, devoted to establishing and
strengthening communication in people without functional speech (an
area in which medically trained staff have much confidence but little
competence).
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.
If the various bodies attempting definitions
in this area had consulted therapists they might have produced
different results. 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"[22] 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." [27]
As Professor Andrews has said, "it takes considerable skill in getting
them into the optimal condition to be able to communicate." [11] "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." [3]
AAC therapists would be able to add to the
list of things that might interfere with communication 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 a recognised hazard in AAC. All these
problems make the words "sustained' and "reproducible' dangerous and
destructive. If I was trapped on a desert
island and trying to contact passing ships I would hope that they would
come to investigate my first attempt at a bonfire rather than waiting
for a pattern to emerge, and if I only had enough wood for one clearly
visible fire I would hope that was enough.
Unfortunately, one of the other issues with
the term persistent vegetative state is that its diagnosis is usually
taken to preclude AAC intervention. In a
recent study, the most commonly cited reason for failure to offer AAC
to people with acquired problems was presumed lack of cognition [27]. 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" [3] 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. Even if
no useable responses are found this assessment should be reviewed
annually (and immediately any improvement is observed in the patient). Regular reviews are necessary both because
there may have been subtle gains in movement control not detectable
without the use of technology and because non-speech communication
technology itself is developing rapidly.
The idea of a specialist team necessarily
implies the development of a centre dealing with such cases in each
large population centre. The Royal
Hospital for Neuro-Disability may well serve as a model (and should
serve as a benchmark; recovery/rediagnosis rates much below their 75%
should eventually require explanation).
The existence of such centres (or their
absence) should be given legal, or at least judicial, recognition. It is not simply that courts should not accept
a diagnosis of persistent vegetative state as being authoritative
unless made by an expert (taken here as being a practitioner who had
observed a respectable number of cases with that
diagnosis), although that should also go without saying. Courts should not accept a prognosis of
continuing vegetative state unless the patient has been offered
rehabilitation by an expert (taken as being one of the very considerably
smaller number of practitioners who had assisted in the recovery of a
respectable number of cases with that diagnosis). Diagnosis
cannot be separated from therapy.
If the lessons of Professor Andrews' work are
accepted, replicated, and supported, people with these conditions can
be offered the opportunity to take life and death decisions for
themselves, without the need for the judgements of doctors, priests, or
husbands. This will still, of course, raise ethical questions -- but
rather different ones. It hardly seems
fair, for example, that the only circumstance in which a person cannot
be killed is if they are able to ask for release. Once having
re-established communication, we must show these people that their lives
can be made bearable, or we must accept the consequences .
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2 Airedale N.H.S. Trust v. Bland, [1993] 2 WLR 318 (Brown J.)
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4 H. Ashraf, BMA address
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7 British Medical Association, Withholding and withdrawing Life-Prolonging Medical Treatment, Author, London, 1996
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1 "persistent vegetative state' and "Schiavo' called up 4,760 entries on Google (6/5/04), "permanent vegetative state' and "Schiavo' only 824.
2See, for example, Schildler v. Schiavo, 2004, Case 2d03-5200 Florida District Court of Appeal.
3 Of 112 Medline citations for "vegetative state' in the period 2002-2003, 60 mention "persistent vegetative state' , 44 "vegetative state' only, and only 5 "permanent vegetative state".
4 See, for example, "Critical Care" (1997), "Signs of Life" (1999), "Talk To Her" (2002), or "The Safety of Objects" (2003).
[1] "persistent vegetative state' and "Schiavo' called up 4,760 entries on Google (6/5/04), "permanent vegetative state' and "Schiavo' only 824.
[2] See, for example, Schildler v. Schiavo, 2004, Case 2d03-5200 Florida District Court of Appeal.
[3] Of 112 Medline citations for "vegetative state' in the period 2002-2003, 60 mention "persistent vegetative state' , 44 "vegetative state' only, and only 5 Òpermanent vegetative state".
[4] See, for example, ÒCritical Care" (1997), ÒSigns of Life" (1999), ÒTalk To Her" (2002), or ÒThe Safety of Objects" (2003).
[5] Where correct protocols are followed, 7-14 days
[6] Although this formulation has been objected to on the grounds that that people in such a state still do have responses, even if these are subcortical (Zazler, N., private communication).