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TV Time

I'm told this humble site was featured on CNN this afternoon. Meanwhile, I should be on MSNBC tomorrow morning at 9:45 AM EST talking feeding tubes, blatant disregard for the rule of law, etc.

March 21, 2005 | Permalink

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If at all possible, see if you can make people laugh at them.

Posted by: masaccio | Mar 21, 2005 7:00:37 PM

good luck

Posted by: fnook | Mar 21, 2005 7:07:41 PM

Please do bring up the extent to which the Republicans are going against their own constituency, as evidenced by
the ABC poll and a million other polls.

Posted by: Allen K. | Mar 21, 2005 7:14:48 PM

If you get a chance (and when it's posted), listen to the NPR segment w/ Jeffrey Rosen, who lays out the legal issues. It's a bit more complicated than you might think at first, so be sure to go in ready.

Posted by: praktike | Mar 21, 2005 7:19:43 PM

OK, you're going on TV so you need to be informed. Fucking long post follows. If I was you I'd start another post and comments so nobody else has to read it.

From Neurorehabilitation, Volume 19, Number 4 / 2004, 381-389.
"Permanent Vegetative State: Usefulness and limits of a prognostic definition"
C. J. Borthwick & R. Crossley
chrisb@vicnet.net.au

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.

Jennett, in adopting the RCP nomenclature, said "the "persistent' component of this term.... may seem to suggest irreversibility, although Jennett and Plum had made it clear that this should not be implied. Recovery of varying degrees after weeks and sometimes months in a vegetative state is now widely recognised.... " [16] Here Jennett has underestimated the effect of his own formulation. Lay observers have always interpreted the diagnosis as involving prognosis; medical writers, more aware of problematic incidents, have generally taken the view that the impression of irreversibility is worth preserving. In the words of a 1996 British Medical Association paper on treatment decisions for patients in persistent vegetative state, for example, "an enduring cause for concern.... have [sic] been the intermittent reports of alleged "recovery' from PVS. In the BMA's view, recoveries, where they can be verified, indicate an original misdiagnosis."[7] The BMA is thus saying precisely that patients in a properly diagnosed persistent vegetative state never recover, and therefore if someone diagnosed as being in persistent vegetative state recovers this discredits the diagnosis, not the definition.

Under this approach what might otherwise be seen as disconfirming instances are irrelevant. "If you diagnose a number of people as having tuberculosis and all die, the definition of tuberculosis might include the prognostic criterion "invariably fatal'. If one patient eventually recovers, however, you would modify your criteria to omit the words 'invariably fatal' -- or, if you were following the PVS model of nosology, you would note that having recovered the patient did not meet the criterion of fatality and therefore could not have had tuberculosis in the first place."[5] This approach sees persistent vegetative state as a Platonic ideal, reflected imperfectly in the diagnoses of those who see through a glass darkly. However persuasive this may be as metaphysics, we ourselves live in the world of phenomena, where the only observable data consists of people who have been diagnosed as being or not being in persistent vegetative state. In practice ethicists, philosophers, and the medical profession move nimbly between the Platonic sphere and visible experience, carrying baggage both ways.

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]

In 1972 Jennett and Plum called for research to establish the criteria needed to establish reliably a prediction of permanence. Thirty-two years of research having failed to achieve this reliability, it is now said to be unnecessary. Patients have Permanent Vegetative State if they will be either probably unconscious or certainly disabled. This, too, approaches bad faith -- taken, again, as meaning that the process has an undisclosed agenda. The uncontested expansion of the definition can be explained only under the hypothesis that the problem that the Multi-Society Task Force was concerned to combat was not the lack of awareness of these patients but their survival.

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 .

References

1 Airedale N.H.S. Trust v. Bland, [1993] 1 All ER 821 (Hoffman J.)

2 Airedale N.H.S. Trust v. Bland, [1993] 2 WLR 318 (Brown J.)

3 K. Andrews, L. Murphy, R. Munday, C. Littlewood, C. Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit. BMJ 313 (1996) 13-16

4 H. Ashraf, BMA address the issue of withholding and withdrawing treatment, Lancet 353 (1999) 9171

5 C. Borthwick, The Permanent Vegetative State: Ethical crux, medical fiction? Issues in Law & Medicine, 12:2 (1996) 167-185

6 C. Borthwick, Persistent Vegetative State -- Syndrome in search of a name, or judgement in search of a syndrome? Monash Bioethics Review, 14:2 (1995) 20-25

7 British Medical Association, Withholding and withdrawing Life-Prolonging Medical Treatment, Author, London, 1996

8 R. Cranford, Misdiagnosing the persistent vegetative state, BMJ 313 (1996) 5-6

9 R. Crossley, Speechless, E P Dutton, New York, 1997

10 J. Doble, A. Haig, C. Anderson, & R. Katz, Impairment, activity, participation, life satisfaction, and survival in persons with locked-in syndrome for over a decade: follow-up on a previously reported cohort. J Head Trauma Rehabil. 18(5) (2003) 435-44.

11 Frontline, Scotland; Back from the dead, 22/11/2000, http://news.bbc.co.uk/1/hi/scotland/1033502.stm

12 J. Giacino, S. Ashwal, N. Childs, R. Cranford, B. Jennett et al, The minimally conscious state: Definition and diagnostic criteria Neurology;58 (2002) 349-353

13 B. Jennett, Resource allocation for the severely brain damaged, Arch Neurol 33 (1976) 595-597

14 B. Jennett, K. Boyd, Managing the Persistent Vegetative State, BMJ, 305(6852) (1992) 486-7

15 B. Jennett, The vegetative state: Medical facts, ethical and legal dilemmas, New York, CUP, 2002, p.144

16 B. Jennett, The vegetative state: Medical facts, ethical and legal dilemmas, New York, CUP, 2002, p.4

17 B. Jennett, Resource allocation for the severely brain damaged, Arch Neurol 33 (1976) 595-597

18 B. Jennett. The persistent vegetative state BMJ 310 (1995) 1137

19 B. Jennett & F. Plum, (1972) Persistent Vegetative State After Brain Damage; A Syndrome in Search of a Name, Lancet. 1(7753):734-7

20 John Paul II, Address to participants in the International Congress on "Life-Sustaining Treatments and Vegetative State; Scientific Advances and Ethical Dilemmas', 20 March 2004, http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_2040320_congress-fiamc_en.html

21 K. Mitchell, I. Kerridge., & T. Lovat, T, Medical futility, treatment withdrawal, and the persistent vegetative state, Journal of Medical Ethics, 19 (1993) 71-76

22 Multi-Society Task Force on PVS,. Medical aspects of the persistent vegetative state (1). New England Journal of Medicine. 330(21) (1994) 1499-508

23 National Health and Medical Research Council, Post-coma unresponsiveness (Vegetative State): a clinical framework for diagnosis, NHMRC, Canberra, 2003 [http://www.health.gov.au/nhmrc/publications/synopses/hpr23syn.htm]

24 Plum F, Posner J. The diagnosis of stupor and coma. 3rd ed. Philadelphia, PA:FA Davis;1982.

25 Re D [1998] 1 FLR 411

26 Royal College of Physicians, Guidance on diagnosis and management: Report of a working party of the Royal College of Physicians, London, Royal College of Physicians, 1996

27 Royal Hospital for Neurodisability, International Working Party Report on the Vegetative State (1996), London, RHN

28 A. Russell. & S. McAllister, Use of AAC by Individuals with Acquired Neurologic Communication Disabilities: Results of an Australian Survey, AAC, 11, 3 (1995) 138-141

29 T. Shannon & J. Walter, Artificial nutrition, hydration; Assessing papal statement, National Catholic Reporter, April 16, 2004, http://natcath.org/NCR_Online/archives2/2004b/041604/041604i.php

30 D. Tresch, F. Sims, E. Duthie et al, Clinical characteristics of patients in the persistent vegetative state. Arch Intern Med:151 (1991) 930-32

31 D. Wade, Response, eLetters for Jennett 319 (7213) 796-7, (Electronic response) 7 October 1999, http://www.bmj.com/cgi/eletters/319/7213/7

Footnotes -

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).


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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.

[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).

Posted by: chris | Mar 21, 2005 7:22:29 PM

That post was exceedingly hard to fap too.

Posted by: foo | Mar 21, 2005 7:29:25 PM

They don't call you Big Media Matt for nothing.

Posted by: Alice Marshall | Mar 21, 2005 7:44:23 PM

The legal issues are formidable, especially if you don't have a formal legal education (don't know if you do).

This will help tremendously:

http://www.nvo.com/mikelaw/nss-folder/misc/InjunctionOpposition.pdf

It's the husband's brief in opposition to the parent's motion for an injunction in the case that was just filed in federal court. It lays out the basic facts, the previous legal proceedings, and the main legal arguments against the claims in the current lawsuit.

Keep in mind that it just scratches the surface of the legal issues raised by this case.

Posted by: Anon | Mar 21, 2005 7:48:59 PM

Chris,

I googled some of your writings yesterday when you posted on this topic before, and they make interesting reading. But while the misdiagnosis of PVS might be an interesting topic on its own merits, and in the abstract, surely there must be some individual cases in which the possibility of error is so remote as to be not worth seriously considering.

My undertstanding is that Terry Schiavo has almost no cerebral cortext left, and that the solid brain matter that was once there has been largely replaced by fluid. Are you claiming that for a person in this condition, it is a rationally entertainable possibility that the condition is reversible?

Posted by: Dan Kervick | Mar 21, 2005 8:00:07 PM

you will be set opposite
la shawn barber, that is what
she is saying on her little
throne, anyway. . .

[she -- a rabid far right black
conservative blogger -- has start-
ed doing senseless talking head
pieces for msnbc on the "connected
coast to coast" aft. show. . .

she was on today -- video feed
available from the political
teen dot net.]


if she's on with you, you
might want to take a look at
my "sunshine is the anti-dote
to ms. barber's-regular-stream-
of-misinformation" -- the site
is below, but i've not made
much of her position on schiavo,
as her position is no different
than many on the hard-right. many
others have done a fine job countering
that position. but if she strays
off into wing-nuttery, on any OTHER
topic, ask her what "la shawn barber,
exposed dot blogspot dot com" had
to say about her lunacy. . .

she'll blow a gasket, and

i'll guaranteeeeeee it!

he he!

increase the

p e a c e,

-- tae, out.

Posted by: tae_diggs | Mar 21, 2005 8:01:36 PM

click on the television
in this post, and read the
comments section, for a blow-
by-blow of her miscues, in
her last really substantive
appearance on msnbc -- the
small snippet of video is
hosted on my website, so
be kind with my bandwidth. . .

it's a 4 mb *.mpg file

p e a c e,

-- tae, out.

Posted by: tae_diggs | Mar 21, 2005 8:08:57 PM

Well nice to have a legal expert on..after all thats what a philosophy degree means right?

Posted by: Rob | Mar 21, 2005 8:22:53 PM

Oh goody! I can hardly wait! Tivo, tivo, tivo! I bet you'll be simply smashing.

Posted by: QUEER EYE FOR THE STRAIGHT Y | Mar 21, 2005 8:42:54 PM

Look for me on t.v. also. I'll be the one protesting outside the hospital with a sign reading "Let Terri Go To Heaven".

Posted by: Oberon | Mar 21, 2005 9:02:21 PM

I second praktike--I heard the Jeffrey Rosen interview (http://www.npr.org/templates/story/story.php?storyId=4544762) at the gym today and it's very informative. Looking at the brief filed by Michael Schiavo's lawyer (linked above) and the text of the bill (http://www.npr.org/documents/2005/mar/schiavo_bill.pdf), it looks to this lay person like Congress created jurisdiction but not a claim unless the Schindlers can prove that her rights were violated. I guess their due process claim is an attempt at that, but I don't think it's very colorable. The interesting question is whether Judge Whittemore will find the statute unconstitutional as urged in the opposition brief. I doubt he'll do more than he needs to in the ruling, and I don't think the statute would trigger strict scrutiny analysis, but the brief makes some good, though sort of sloppy (he was rushed, I know), points about its constitutionality.

I also think this article about Judge Whittemore is vaguely interesting. http://www.kansascity.com/mld/kansascity/news/nation/11195729.htm

Congrats on all the network recognition and good luck!

Posted by: Julie | Mar 21, 2005 9:29:54 PM

If we are having company coming due to nat tv exposure, I would like to say that all the comments in threads below signed "bob mcmanus" were foul forgeries of a troll.

Posted by: bob mcmanus | Mar 21, 2005 9:36:05 PM

Question: Is it ok in Texas to remove the assisted breathing of a viable baby if it is Black? Would we be having the media jamboree if the baby was White?

Posted by: dilbert dogbert | Mar 21, 2005 9:52:47 PM

See Mark Kleiman. Sounds like Texas hospitals can pull the plug on perfectly sentient patients.

Plus,
Bush Team: "See how twisted those Fla. state courts are? That's why we had to intervene in 2000."

Posted by: yesh | Mar 22, 2005 1:16:00 AM

Cool.

Posted by: Deborah White | Mar 22, 2005 1:49:23 AM

You were excellent on MSNBC just now. Thanks.

Posted by: kay | Mar 22, 2005 9:55:19 AM

Hmmm...did I miss it? I was watching MSNBC from 9:45am ET onwards, but they were talking to John Meacham from Newsweek and then Ric Weiss (I think) from WaPo.

Posted by: Ricky Barnhart | Mar 22, 2005 10:00:48 AM

I thought you were good too. You covered a lot of turf, for viewers ready to follow data. It was ca. 9:30.

Posted by: John Isbell | Mar 22, 2005 11:30:22 AM

- You failed to do the requisite big insincere smile when saying "Thank you" at the end.

- I liked your ending up with a simple "It's disgusting".

- I would've paid money if you'd asked the host, "Willow Bay? C'mon. That's like when the weatherman is named Stormy Weathers. What's your real name?"

Posted by: Petey | Mar 22, 2005 5:54:11 PM

Dan asks "But while the misdiagnosis of PVS might be an interesting topic on its own merits, and in the abstract, surely there must be some individual cases in which the possibility of error is so remote as to be not worth seriously considering. My undertstanding is that Terry Schiavo has almost no cerebral cortext left, and that the solid brain matter that was once there has been largely replaced by fluid. Are you claiming that for a person in this condition, it is a rationally entertainable possibility that the condition is reversible?"

Reversible, no. But that's not my point. I don't say she'll recover from her disability; I say she'll probably, on the stats, be able with proper care to recover consciousness, if she's not conscious already, at which point we can ask her what she want.
Which would make the question - I hope you agree - 'Is Ms Schiavo's cerebral state inconsistent with cognition? and here, as Lorber pointed out some time ago in 'Is your Brain Really Necessary?'(http://web.archive.org/web/20030404031139/http://www.enidreed.com/serv01.htm, we know that people can be conscious - indeed, get to university -- with vanishingly small amounts of cortex and a headful of water. Different circumstances, certainly, no clear comparison, but underlining that at our present state of knowledge it's not possible to make a priori statements on what any particular brain geography has to mean.
The relevant comparison isn't between Schiavo's scan and mine or yours; it's between Schiavo's scan and those of other people diagnosed with PVS who have later recovered consciousness, and that's a study that hasn't been done. Some of the europeans - Laureys, for example - are looking at this, but America doesn't seem to see there's an issue.
The only valid test is how the person behaves - measured not at a random visit but after they've had the necessary pre-prep. I'd have to say that Andrews' team at the Royal Hospital of Neurology is about the only group whose techniques I'd trust.
As I say, killing Schiavo is fine by me. Hell, being starved to death would be a month in the country compared to some of the things they do to patients labelled PVS. But the price of killing her seems to be agreement to the proposition that people in PVS can't feel pain, which leads inevitably to even more frequent hideous cruelties to the thousands of people diagnosed as PVS who are still hanging around.
And I wish some of the lawyers commenting on this issue would make clear that most of the pyramid of judges that have ruled on this all had to build on Greer's finding of fact rather than independently assessing the evidence. The division of fact and law does seem to throw most laypeople.

Posted by: chris | Mar 22, 2005 6:05:42 PM

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