Introduction	Part 2	Part 3	Appendices
Part 1	Introduction to Part 2	Introduction to Part 3	Appendix A
Introduction to Part 1	Chapter 6	Chapter 9	Appendix B
Chapter 1	Chapter 7	Chapter 10	Appendix C
Chapter 2	Chapter 8	Chapter 11	Appendix D
Chapter 3	Conclusions to Part 2	Thesis Conclusions	Appendix E
Chapter 4			Appendix F
Chapter 5			Bibliography
Conclusions to Part 1			Books and Articles
			Legal Cases

Chapter 4: PVS, Locked-In Syndrome and an alternative definition of PVS

The aim of this chapter is to examine the definition of PVS with the emphasis on clarifying its differential definition (i.e. the criteria which enable PVS to be distinguished from other conditions with which it might be confused) rather than its absolute definition (i.e. a set of necessary and sufficient conditions for diagnosing PVS), the former being the more problematic. The ‘Guillain-Barré‘ Syndrome - also know as the ‘Locked-In’ Syndrome - is a condition which very closely resembles PVS and one with which it is easily confused. The criterion often advanced as enabling these conditions to be distinguished is the possession of consciousness (it is said to be present in Locked-In Syndrome but absent in PVS). However, this criterion is problematic because, as has been seen in Chapter 1,[i] there is no scientific method of determining the presence, or absence, of consciousness.[ii] Because of these difficulties the distinction between PVS and Locked-In Syndrome is especially important and it is a particular focus of this chapter.

In discussing the definition of a medical condition such as PVS or Locked-In Syndrome, not only are the theoretical aspects of the definition of importance - i.e. whether it is a logically coherent definition and whether the set of criteria offered to distinguish it from related conditions, is a complete set - but the practical aspects of the definition are also of significance - i.e. Is it useable in a clinical setting? Assuming a definition is theoretically sound, then a good indicator of its practical utility is to be found in the rate of misdiagnosis associated with its use. As is seen later in this chapter, the rate of misdiagnosis associated with PVS is alarmingly high - of a magnitude similar to that to be expected if diagnosis was made by the tossing of a coin.[iii] This alone indicates that the difficulties associated with the definition of PVS are substantial. These difficulties are the concern of this chapter and are considered in detail in later sections; however it is advantageous - before becoming enmeshed in detailed argument - to have some wider overview of the magnitude of the problem. To assist in this I wish to first recap on an earlier conclusion and then to quote from two doctors, Keith Andrews and Michael McQuillen, both eminent practitioners in the field of PVS.

As to the conclusion: In an earlier chapter[iv] the question was asked as to whether there were any areas of the brain, damage to which was uniquely associated with PVS. The conclusion of that discussion was that:

Conclusion _{3 -2} : As yet, no particular areas of the brain have been identified, damage to which, or whose inactivity, is uniquely associated with PVS.

Thus, in the search for a definition of PVS, one obvious and apparently promising avenue of exploration has, as yet, been unfruitful.

As to the medical authorities: Andrews begins his paper ‘Managing the persistent vegetative state’ by testifying to the problematic nature of PVS:

“The persistent vegetative state is one of the least understood conditions in rehabilitative medicine.” [v]

McQuillen is equally dissatisfied with the current understanding of PVS. He emphasises that PVS is just a syndrome - i.e. just a collection of symptoms without any necessary theoretical unity. There may be no one underlying pathology or, indeed, there may be many such pathologies which future research may succeed in disentangling. At all events, being a syndrome,[vi] it is not to be expected that PVS is, at present, amenable to a fully coherent theoretical analysis. Unfortunately, in ethical and legal discussions[vii] PVS is treated as a coherent, well defined, condition. In such discussions it functions as a gateway concept, meaning that once it is diagnosed, certain ethical and legal consequences - such as that the tube feeding of such patients is a ‘medical treatment’ and that the withdrawal of such treatment is permissible - are generally deemed appropriate. These consequences would not be considered appropriate had PVS not been diagnosed. Thus, in times when medical resources are regarded as scarce, it should not be unexpected that the ambiguities surrounding the definition of PVS - which at other times would be deplored - can now be seen to be of benefit and be made to serve economic ends. McQuillen has not commented on the economic reasons for this tendency but has noted its existence:

“In recent years, some researchers have emphasised the essentially clinical nature of the ‘vegetative state’ and have attempted to extend its limits to include the end stage of any chronic, progressive, neurodegenerative disorder at one end of life and to compare it with anencephaly at the other. Such a comparison has obvious pragmatic impact on any discussion of the ethical consequences of the syndrome but is flawed from the start, since the syndrome is just that: a ‘set of symptoms which occur together,’ by no means precise, easily recognised or even well accepted.“ [viii]

____________

A further cause of the difficulties encountered in discussing PVS, is the use of an inappropriate terminology.[ix] Andrews adverts to this difficulty:

“The term[x] is unfortunate. Many people understate ‘persistent’ to mean ‘permanent’ - that is, a statement of final outcome rather than a statement on the present state.” [xi]

This difficulty is compounded when, as has occurred,[xii] the term ‘permanent’ is explicitly used.

Maurice O’ C. Drury - who was himself a medical doctor and a pupil of Wittgenstein’s - believed that the choice of appropriate terminology was especially important in medical discussions because of the danger that from:

“... unsystematic nomenclature suppositions are drawn, which then become presumptions and only too easily pass over into established truths. I would say that the chief danger of an unsystematic nomenclature is the danger of regarding its classification as mutually exclusive and completely exhaustive.” [xiii]

The importance of the role of terminology in the discussion of PVS is also a theme of this chapter.

____________

This chapter comprises six sections. Section 1 discusses the definition of PVS given by Jennett and Plum in their 1972 paper which first identified the condition and named it as such. Subsequent formulations of the definition are considered in Section 2. Section 3 draws some conclusions from studies on the extent of misdiagnosis of PVS. (The studies themselves are considered in Appendix A.) Section 4 considers Chris Borthwick’s criticism of the coherence of the concept of PVS. (Some of Borthwick’s papers relevant to the discussion are summarised in Appendix B.) It will be suggested that Borthwick’s criticism is not sufficiently far-reaching and that the conceptual problems lie much deeper than he suggests. An alternative definition of PVS emerges out of the foregoing analysis and this is discussed in Section 5. The conclusions of the chapter are stated in Section 6.

Section 1: The original definition of PVS

An article by Jennett and Plum,[xiv] published in 1972, was the first to name the syndrome ‘Persistent Vegetative State’ as such. This syndrome, after its acute stage had passed, was characterised by:

* “... the absence of function in the cerebral cortex as judged behaviourally;” [xv]

* “The eyes are open and may blink to menace, but they are not attentive; ... It seems there is wakefulness without awareness.” [xvi]

* “A significant grasp reflex often appears, ... sometimes fragments of coordinated movements may be seen such as scratching...” [xvii]

* “Grunting or groaning may be provoked by noxious stimuli, but most of these patients are silent; they neither speak nor make any meaningful response to the spoken word.” [xviii]

Jennett and Plum recognised that the term ‘Persistent Vegetative State’ primarily:

“... describes behaviour, and it is only data about behaviour which will always be available” [xix]

In their view the:

“... essential component was the absence of any adaptive response to the external environment, the absence of any evidence of a functioning mind ...” [xx]

Such patients were:

“... incapable of communication and without hope of recovery as social human beings.” [xxi]

The Jennett and Plum article was seminal and has had a considerable influence on the subsequent debate on PVS. The authors displayed a precision in their use of language which is seldom found in the subsequent discussion. They were aware of the danger of drawing unjustified inferences and were scrupulous in their choice of terminology, being fully conscious of the subtle implication of inappropriate terminology. Subsequent discussions on PVS have often concentrated on the supposed ‘lack of consciousness’ of the PVS patient yet a careful reading of the Jennett and Plum paper shows a different emphasis. To more easily permit these differing shades of meaning to be discussed, it is useful to make the following distinctions:

PVSBEH	to denote a definition of PVS made solely in behavioural terms.
PVSCOM	to denote a definition of PVS where the emphasis is on the inability to communicate.
PVSMTL	to denote a definition of PVS where ‘mentalist’ terms - such as lack of consciousness - are used

The distinction between PVS_BEH and PVS_COM might seem otiose in that communication - whether by word or gesture, or more primitively by blinking ‘one for yes, two for no’ - is necessarily behavioural, yet it is possible to imagine a patient who displayed ‘purposive’ behaviour - say, in his reaching towards a cup - but with whom it was not possible to establish any communication; the distinction is also of importance in that a definition in terms of communication is ‘dynamic’ - it points therapeutic intervention in a definite direction, that is towards establishing communication; in contrast, a definition in terms of behaviour is ‘static’ because once behaviour has been observed a diagnosis can be made with no internal, or theoretical, pressure for ongoing review.

The immediate problem is to determine which of PVS_BEH , PVS_COM or PVS_MTL best fits Jennett and Plum’s analysis.

The definitional strategy that best describes the Jennett and Plum approach

The peripheral role of PVS_MTL

Surprisingly in view of subsequent developments, it is not the PVS_MTL definition that is most central. Certainly the authors at one point use the term ‘mindless’ [xxii] but it is immediately qualified with the phrase ’as best can be judged behaviourally, the cerebral cortex is not functioning’. The phrase ‘lack of consciousness’ is not used; the closest the authors come to such a terminology is when they speak of a ‘profoundly altered consciousness’ [xxiii] and when they state that “It seems that there is wakefulness without awareness.” [xxiv] At another point the authors speak of actions being ‘reflex’ though they note that ‘to the inexperienced observer ..[such actions]. ..may even be regarded as purposeful or voluntary’.[xxv] Although this description does have ‘mentalist’ connotations, an alternative formulation - ‘their responsiveness is limited to primitive postural and reflex movements of the limbs.’ [xxvi] - is also used by used by Jennett and Plum; the latter phrase is used as logically equivalent to the former and it is without any mentalist connotations. Thus, although there is a use of a mentalist terminology, it is a superficial use which masks an underlying behaviourist framework. Indeed the authors show a strong desire to stress the behaviourist base of their definition; this is evidenced in the following passage:

“ ... the immediate issue is to recognise that there is a group of patients who never show evidence of a working mind. This concept may be criticised on the grounds that observation of behaviour is insufficient evidence on which to base a judgement of mental activity: it is our view that there is no reliable alternative available to the doctor at the bedside, which is where decisions have to be made.” [xxvii]

One further use of ‘mentalist’ terminology is when Jennett and Plum state (in speaking of ‘Locked-In Syndrome’ patients):

“Such patients are entirely awake, responsive and sentient, although the repertoire of response is limited to blinking, and jaw and eye movements. One patient ... signals by Morse code using blinks and jaw movements ...” [xxviii]

Thought the distinction between Locked-In Syndrome and PVS is formulated using a mentalist terminology (‘awake’, ‘sentient’) these concepts again play only a peripheral role; the important feature permitting the distinction is the ‘blinking’ or ‘signalling’. This permits the conclusion to be drawn:

Conclusion _{4 -1} : The definition of PVS and the distinction between it and Locked-In Syndrome given by Jennett and Plum is capable of being formulated either in a ‘mentalist’ (PVS_MTL) or behaviourist (PVS_BEH) terminology or in terms of an inability to communicate (PVS_COM). The mentalist formulation is peripheral.

We next examine which of the other possibilities - i.e. PVS_BEH or PVS_COM - is the more fundamental to Jennett and Plums’ analysis.

Which of PVS_BEH or PVS_COM is the more fundamental?

Certainly the initial impression on reading Jennett and Plum’s article is that ‘patient behaviour’ is the more important diagnostic criterion - the poverty of the behavioural responses are adverted to more often than is the inability to communicate. Against this, it could be argued that the inability to communicate is the more fundamental as is shown by, for example, the following passage:

“ ... [vegetative patients] were described as incapable of communication and without hope of recovery as social human beings. … All the patients are speechless and also fail to signal appropriately by eye movements, although they sometimes follow moving objects ...” [xxix]

The primacy of ability to communicate as a diagnostic criterion is particularly evident in relation to the distinction between PVS and Locked-In Syndrome, because the difference between PVS and ‘locked-in syndrome’ patients - which is so slight when stated in behavioural terms - show their true importance only when interpreted as communication. Furthermore Jennett and Plum speak of the wisdom of making:

“... an absolute distinction between patients who do make a consistently understandable response to those around them, whether by word or gesture, and those who never do.” [xxx]

The making of an ‘understandable response’ is better accommodated in a framework where ‘ability to communicate’,[xxxi] rather than observed behaviour, is the focus of primary concern; these points suggests PVS_COM as the more fundamental.

There are, however, arguments in favour of regarding PVS_BEH as the more fundamental. The most important of these is that there are other medical conditions characterised by prolonged unresponsiveness and a definition of PVS in terms of ‘inability to communicate’ might foster confusion; it is this argument which is advanced by Jennett and Plum when they state:

“Such patients are best described as in a persistent vegetative state, which should be clearly distinguished from other conditions associated with prolonged unresponsiveness. What is common to these patients is the absence of function in the cerebral cortex as judged behaviourally; ...” [xxxii]

In order that the risk of confusion can be more clearly assessed, it is of interest to briefly describe these other ‘diseases of responsiveness’.[xxxiii] Those which most closely resemble PVS are ‘Akinetic Mutism’, ‘Locked-In Syndrome’ and ‘Apallic Syndrome’.

Akinetic Mutism

This term was coined by Cairns in 1941 to describe:

“... an intermittent disturbance of consciousness in an adolescent girl with a craniopharyngioma. She lapsed into this state three times in nine months and each time she recovered when the cyst was aspirated. Cairns commented on the eyes being open, apparently attentive and ‘giving the promise of speech’.” [xxxiv]

The term ‘presents considerable semantic problems’ [xxxv] not least because akinesia and mutism do not always occur together. Furthermore, the mutism may only be relative:

“Cairn’s patient would answer in whispered monosyllables, whilst other reported patients would use sign language to communicate.” [xxxvi]

‘Akinetic Mutism’ is, however, better described as a disease of limited responsiveness either in time or in extent, rather than unresponsiveness. Hence, if ‘an inability to communicate which is believed to be permanent’ was taken as a necessary condition for diagnosing PVS then this would permit PVS to be distinguished from ‘Akinetic Mutism’ because in the latter the inability to communicate is either not present or, if present, is not believed to be permanent.

Locked-In Syndrome

In this syndrome patient response is ‘limited to blinking, jaw and eye movements.’ [xxxvii] By using such movements the patient can communicate by a system similar to Morse Code; their condition is thus readily distinguishable from PVS provided this is defined in terms of ‘inability to communicate’.

Apallic Syndrome

This is a term proposed by Kretschmer in 1940 to describe patients who are ‘open-eyed, uncommunicative and unresponsive’. [xxxviii] Jennett and Plum believe that the term ‘apallic’:

“... seems to us more to confuse than to clarify the issue under discussion.” [xxxix]

Jennett and Plum’s discussion on this condition is unsatisfactory in that it is not clear whether they consider Apallic Syndrome to be a clinically different condition from what they term PVS, or the same condition but with an inappropriate name.

An inappropriate name? Other than the criticism of the term ‘apallic’ just mentioned Jennett and Plum also criticise the term because it ‘assumes an unproved pathology’,[xl] and because it contributes to the ‘unnecessarily arcane jargon that often makes neurology needlessly difficult for others to understand.’ [xli]

A different condition? Jennett and Plum seek to distinguish Apallic Syndrome from PVS because:

1. Partial forms of Apallic Syndrome are possible. The ‘full form’ is characterised by an isolectric E.E.G. whereas in PVS, though:

“Initially the E.E.G. may be isolectric, considerable activity and even alpha rhythm may be found once the state has lasted many months.” [xlii]

Jennett and Plum do not discuss the partial forms in any detail.

2. Recovery may be possible from Apallic Syndrome whereas in considering PVS:

“Certainly we are concerned to identify an irrecoverable state, ...” [xliii]

The use of the term ‘near-PVS’ in recent years - it has been used to refer to the Ward case[xliv] - considerably weakens the first objection, as does Jennett and Plum’s acknowledgement that:

“Although we would not deny that a continuum must exist between this vegetative state and some of the others described, it seems wise to make an absolute distinction between patients who do make a consistently understandable response to those around them, whether by word or gesture, and those who never do.” [xlv]

Their second objection is the root of many of the difficulties encountered in discussing PVS because in attempting to identify an irrecoverable condition they conflate ideas of prognosis and diagnosis.

Is PVS an irrecoverable condition?

It could be argued that Jennett and Plum, rather than accurately defining a particular syndrome and then clarifying the prognosis for this syndrome by systematic observation, appear to approach the problem in the reverse order. [xlvi] The authors, whilst acknowledging an uncertainty as to how long the condition must persist before it can be declared permanent, state that they are concerned to identify an irrecoverable state.[xlvii] The suggestion that ‘irrecoverability’ should be incorporated into the definition of PVS introduces a profound logical confusion into the discussion of PVS, and this confusion considerably exacerbates the problem of misdiagnosis.[xlviii] It resurfaces in the BMA discussion of misdiagnosis of PVS[xlix] - the BMA explicitly incorporate ‘irrecoverability’ into the definition of PVS and this has as a necessary consequence that if PVS patients recover then they must, as a matter of logic, have been misdiagnosed. This approach leaves unsolved the problem as to what the (supposedly) PVS patients, who in fact recovered, had actually been suffering from.[l] Jennett and Plum’s analysis would seem to suggest that they were suffering from Apallic Syndrome, however their criticism of the name ‘apallic’ and their unwillingness to suggest an alternative (i.e. different from PVS) would suggest otherwise.

Conclusion _{4 -2} : The Jennett and Plum discussion of PVS is unsatisfactory in that in attempting to identify an irrecoverable condition, it ignores the position of those who recover from a condition which at the time of diagnosis was indistinguishable from PVS.

These difficulties arise from precisely the problem warned against by O’C. Drury:

“[T]he chief danger of an unsystematic nomenclature is the danger of regarding its classification as mutually exclusive and completely exhaustive.” [li]

_____________

Returning now to the question of which of PVS_BEH or PVS_COM is the more fundamental, the following conclusions can now be drawn in relation to the definition of PVS and its possible confusion with other conditions of unresponsiveness:

Conclusion _{4 -3} : According to Jennett and Plum, the diseases of responsiveness that might be confused with PVS are ‘Akinetic Mutism’, ‘Locked-In Syndrome’ and ‘Apallic Syndrome’.

‘Akinetic Mutism’ is better described as a disease of limited responsiveness rather than unresponsiveness; ‘inability to communicate’ is either not present or, if present, is not believed to be permanent. In ‘Locked-In Syndrome’ communication is possible though by a primitive means. ‘Apallic Syndrome’ is a condition which, in so far as is differs from PVS, is characterised by the inability to communicate not being permanent.

Jennett and Plum’s reluctance to base the definition of PVS on inability to communicate is understandable if what was being suggested was a definition of PVS grounded solely in terms of inability to communicate. This, however, is not what is being suggested in advocating PVS_COM; what is being advocated is that ‘inability to communicate’ be considered a necessary condition within a background context of primitive postural movements.[lii] Within such a context, the Locked-In Syndrome patient can be distinguished from the PVS patient simply by the ability to communicate. A further advantage of using a definition of PVS based on ability to communicate is that the problem of defining ‘near-PVS’ (supposedly conscious PVS-like patients), and the distinction between it and PVS, disappears.[liii]

Conclusion _{4 -4} : If, within a context where a patient exhibits only primitive postural movements, PVS is defined in terms of an inability to communicate believed to be permanent (i.e. PVS_COM), then it can be readily distinguished from Locked-In Syndrome and the other conditions of unresponsiveness outlined by Jennett and Plum. Furthermore such a definition allows ‘near-PVS’ and ‘PVS’ to be assimilated into the one condition.

Before leaving Jennett and Plum’s analysis the question of whether they consider PVS to be a discrete medical condition or to be a syndrome, must be addressed. This issue was mentioned briefly in the introduction to this chapter and McQuillen’s views were quoted.[liv]

PVS - a syndrome or a specific medical condition?

Jennett and Plum clearly describe PVS as a ‘syndrome’[lv] - that is a collection of symptoms without necessarily any internal or structural cohesion between them. Surprisingly - in that the authors do not believe that a ‘partial PVS’ is possible - they acknowledge that PVS is not discrete from such as the ‘locked-in syndrome’, but forms part of a continuum. [lvi] This aspect of their analysis seems to have been forgotten by many later commentators who, in seeing consciousness as an ‘either/or’ condition, and in asserting its absence in PVS patients and its presence in ‘locked-in syndrome’ patients, appear to deny this continuum. McQuillen and Andrews are notable exceptions to this tendency. Andrews states:

“PVS is not a concrete diagnosis. It's a continuum from a coma through different levels of vegetative state. We cannot think of being in a vegetative state as a black-and-white situation.” [lvii]

Conclusion _{4 -5} : A further reason for rejecting the assertion that consciousness is necessarily absent in PVS patients, is to be found in the fact that PVS is a syndrome rather than a unitary, theoretically coherent, medical condition; and that it lies on a continuum of conditions at one end of which is the Locked-In Syndrome.

Section 2: Definitions of PVS subsequent to that of Jennett and Plum

This section considers definitions of PVS given by:

1. The President’s Commission for the study of ethical problems in medicine (1983).[lviii]

2. The Multi-Society Task Force on PVS (1994).[lix]

3. The Institute of Medical Ethics working party on the ethics of prolonging life and assisting death: ‘Withdrawal of life-support from patients in a persistent vegetative state’ (1991).[lx]

4. The British Medical Association (BMA) guidelines on treatment decisions for patients in persistent vegetative state (1996).[lxi]

The first two of these are reports by American authorities and the others by British.

The emphasis in this section is on the actual definition of PVS given by these authorities with particular reference to firstly, the question of how the possible consciousness of PVS patients is resolved, and secondly, to how PVS is distinguished from related conditions and especially the Locked-In Syndrome. The terminology used in the reports is also examined for any tendency to hinder clarity of discussion particularly in relation the misdiagnosis of PVS and to the possibility of PVS patients recovering from their condition.

The President’s Commission for the study of Ethical Problems in Medicine

The President’s Commission discussed PVS under the heading ‘Permanent Loss of Consciousness’. They justified this decision by saying:

“The term needed for the discussion in this Report was selected to include deep coma and vegetative state but to exclude patients with partial impairments of consciousness. ‘Permanent Loss of Consciousness’ accomplishes this.” [lxii]

They justified the term ‘unconsciousness’ in stating that:

“The term ‘vegetative state’ denotes unconsciousness with persistent brain-stem functions ...” [lxiii]

The possibility of patients diagnosed as PVS being conscious is resolved by a sleight of hand - surely a case of the tail wagging the dog.[lxiv]

PVS and the possibility of recovery

The President’s Commission considered the term ‘permanently’ [lxv] to be synonymous with ‘lasting ... indefinitely without change; as opposed to temporary.’ They rejected ‘persistent’ because it could apply to situations which are not permanent; they rejected ‘irreversible’ because of its association with coma though they recognised that it might be beneficial because it ‘focuses on the prognostication of therapeutic possibilities’; they rejected ‘judged to be permanent’ because, although it focused on the probabilistic nature of the judgement, it was unwieldy. [lxvi]

Opting for the term ‘permanent’ as the name for a condition which is not necessarily so, may seem to be a matter of ‘mere’ terminology - something of no consequence. This is not so; such inept nomenclature may well have serious consequences as can be seen by considering its effect on the family of a PVS patient especially in circumstances where the withdrawal of treatment is being discussed.[lxvii]

PVS and consciousness

The question ‘Can a PVS patient have some level of consciousness?’ is also neatly resolved because if, by definition, a PVS patients suffers from a ‘permanent loss of consciousness’ then who but the foolhardy would have the temerity to ask such questions?

The distinction between PVS and the Locked-In Syndrome

Distinguishing between PVS and ‘locked-in syndrome’ is also disingenuously resolved because ‘locked-in syndrome’ patients are obviously not permanently unconscious whereas PVS patients have been defined to be so.[lxviii]

Terminology

The linguistic rigour of Jennett and Plum has disappeared. The choice of terminology might seem a trifling matter of ‘mere convention’; that it is not such can be seen by noting that a choice of inappropriate terminology permits questions such as:

‘Can a PVS patient have some level of consciousness?’

‘Can a PVS patient experience pain?’ or indeed

‘Can a PVS patient recover?’

to be ‘resolved’ by a definitional fiat. Such attempts must be exposed for the ‘question begging’ that they are.

Conclusion _{4 -6} : The President’s Commission for the study of ethical problems in Medicine chose a definition of PVS and a terminology for its discussion which effectively precluded the consciousness of PVS patients or their possibility of recovery being questioned.

A terminology which by the use of a linguistic subterfuge, precludes the asking of valid questions cannot but be abjured; it is reminiscent of Lewis Carroll’s ‘Alice in Wonderland’:

“‘When I use a word,' Humpty Dumpty said, in a rather scornful tone, 'it means just what I choose it to mean - neither more nor less.'

'The question is,' said Alice, 'whether you can make words mean so many different things.'

'The question is,' Humpty Dumpty said, 'which is to be master - that's all.’ ”

The Multi-Society Task Force on PVS[lxix]

The definition of PVS

The Multi-Society Task Force defined the vegetative state by giving the following diagnostic criteria:[lxx]

“(1) no evidence of awareness of self or environment and an inability to interact with others; (2) no evidence of sustained, reproducible, purposeful, or voluntary behavioural responses to visual, auditory, tactile, or noxious stimuli;

(3) no evidence of language comprehension or expression;

(4) intermittent wakefulness manifested by the presence of sleep-wake cycles;

(5) sufficiently preserved hypothalamic and brain-stem autonomic functions to permit survival with medical and nursing care;

(6) bowel and bladder incontinence; and

(7) variably preserved cranial-nerve reflexes[lxxi] and spinal reflexes.

The distinguishing feature of the vegetative state is an irregular but cyclic state of circadian sleeping and waking unaccompanied by any behaviourally detectable expression of self-awareness.” [lxxii]

Terminology.

‘Permanent’ versus ’persistent’

The Task Force retreated somewhat from the terminology used by ‘The President’s Commission’[lxxiii] and drew a commendable distinction between ‘persistent’ and ‘permanent’:

“The adjective ‘persistent’ refers only to a condition of past and continuing disability with an uncertain future, whereas ‘permanent’ implies irreversibility. Persistent vegetative state is a diagnosis; permanent vegetative state is a prognosis.” [lxxiv]

A distinction which, as we shall see, seems not to have been fully accepted by the BMA Guidelines and which causes considerable difficulties in the analysis of cases of misdiagnosis.

‘Severe disability’ as a synonym for loss of personhood

The Task Force suggested that sufficient research data was available[lxxv] on the prognosis of recovery to allow judgements to be made, with a high level of confidence, on the likelihood of a particular patient not recovering consciousness:

“... or that if consciousness were recovered, the patient would be left severely disabled.” [lxxvi]

The conjunction of these two outcomes is of interest. It has been pointed out by Andrews[lxxvii] that the prognosis after a skiing accident may well be that ‘the patient would be left severely disabled’ yet such would hardly be considered sufficient reason for ‘treatment withdrawal’; something more than ‘severe disability’ is involved here and is not being addressed. I suggest that it is the specific nature of the disability and its effect on the mental and social capabilities of the ‘recovered’ patient that underlies this discussion; disabilities so great that the ‘personhood’[lxxviii] of the patient be considered to be lost. The unwillingness of the Multi-Society Task Force to directly confront the issue of loss of personhood is to be regretted for many reasons but most importantly because of the deep offence that is caused to people who suffer from ‘severe disability’ but whose personhood is not in question.

Often attempts are made, by using the concept of 'quality of life', to distinguish between the severity of various disablements so that at one end of the scale, disablement is regarded as so severe ‘that life is no longer worth living’. These 'quality of life' judgements are considered in Part 2 of this thesis where it is argued that ‘absolute quality of life’ judgements - i.e. judgements that the ‘totality’ of a patients life is such ‘that life is no longer worth living’ - are ethically impermissible. However, in Part 3 of this thesis it is argued that an individual who is deemed to have permanently lost their ability to communicate has lost their personhood. It is this loss of ability to communicate that its crucial rather than disability per se. Bringing the concept of personhood centre stage allows a resolution of the PVS problem without the necessity for devaluing the lives of those who are disabled.

PVS and consciousness[lxxix]

The opening sentence of the Task Force’s discussion of the definition of PVS speaks of the ‘complete unawareness’ of PVS patients.[lxxx] Two paragraphs later this criterion becomes lack of ‘behaviourally detectable expressions of self-awareness’.[lxxxi] Subsequently, however, the Task Force does distinguish between these concepts, and acknowledge the possibility that a patient may be conscious whilst not manifesting ‘conscious behaviour’:

“A false positive diagnosis of a persistent vegetative state could occur if it was concluded that a person lacked awareness when, in fact, he or she was aware. Such an error might occur if a patient in a locked-in state (i.e. conscious yet unable to communicate because of severe paralysis) was wrongly judged to be unaware. Thus, it is theoretically possible that a patient who appears to be in a persistent vegetative state retains awareness but shows no evidence of it. In the practice of neurology, this possibility is sufficiently rare that it does not interfere with a clinical diagnosis carefully established by experts.“ [lxxxii]

The Task Force shed no light on how the ‘rarity’ of this condition could conceivably be established, nor on how the use of such a term could be reconciled with the high level of misdiagnosis.

Conclusion _{4 -7} : The Multi-Society Task Force on PVS acknowledge the possibility that patients who appear to be in a persistent vegetative state might retain awareness but show no behavioural manifestation of this. The Task Force asserts, without giving theoretical ground for such an estimate, that such cases are ‘rare’.

The distinction between PVS and the Locked-In Syndrome

Let us take the above quotation as authority for the existence of a group of patients who are aware but exhibit no ‘conscious behaviour’ - let us call them the ‘frozen-aware’.

The ‘frozen-aware’

Concerning this category one might ask whether they should be classified as ‘PVS’ or as ‘locked-in syndrome’ patients or be regarded as a separate category. The Multi-Society Task Force report, as we have seen, categorises such patients as being ‘locked-in syndrome’ patients. This has the important consequence that the ‘locked-in syndrome’ can no longer be defined behaviourally. The standard assertion - as mentioned, for example, by Jennett and Plum - that ‘locked-in syndrome’ patients are responsive[lxxxiii] though in a limited fashion must be abandoned; yet this very assertion is made by the Multi-Society Task Force - they give the criterion ‘eye movement preserved’ as a characteristic of the Locked-In Syndrome.[lxxxiv] We shall examine the Task Force’s definition of the Locked-In Syndrome shortly; but first note that there are two other possibilities. The ‘frozen aware’ could be categorised as being PVS or as comprising a category distinct from both PVS and the Locked-In Syndrome.

The ‘frozen aware’ - are they PVS?

Could the ‘frozen aware’ have been categorised as PVS? If so, then the assertion that PVS patients necessarily lacked awareness could no longer be sustained, and the conclusion that some PVS patients are conscious - and, presumably, can experience pain - must be accepted.

The ‘frozen aware’ - are they a distinct category?

Could the ‘frozen aware’ have been considered as forming a third category distinct from PVS and Locked-In Syndrome? If this were done then this new categorisation could only be sustained at a theoretical level as it would be utterly devoid of diagnostic criteria that could be used in a clinical setting; such a possibility would render an already difficult situation even more confused.

Considering the difficulties faced by medical professionals in attempting a diagnosis of conditions such a PVS, it might seem unduly pedantic to introduce such distinctions. My defence is that an examination of the problem of categorising the ‘frozen aware’ permits a more useful conceptual framework to emerge for discussing PVS and ‘locked-in syndrome’, than exists at present. In order to set the groundwork for this argument[lxxxv] let us examine how the Multi-Society Task Force define the Locked-In Syndrome.

The definition of ‘locked-in syndrome’ adopted by the Multi-Society Task Force

The Multi-Society Task Force use the term ‘Locked-In Syndrome’ to refer to:

“... a state in which consciousness and cognition are retained but movements and communicate are impossible because of severe paralysis of the voluntary motor system.” [lxxxvi]

This patient, with whom communication is impossible, becomes - within that very same paragraph of the report - able to communicate by eye movements:

“Patients with this syndrome can usually establish limited communication through eye-movement signals.” [lxxxvii]

Such imprecision in the use of the term ‘communication’ bodes ill for clarity of discussion. However, such imprecision is crucial to defending the stance adopted by the Multi-Society Task Force because it permits the ‘frozen aware’ to be classified as being Locked-In Syndrome. If ‘ability to communicate’ was a necessary criterion of being categorised as Locked-In Syndrome then the frozen aware could not be so classified.

What then are the necessary criteria for diagnosing Locked-In Syndrome?

We are told simply that:

“Diagnosis of the locked-in syndrome is established by clinical examination.” [lxxxviii]

This is the one definitive statement in the treatment of Locked-In Syndrome; certainly support may be garnered from other directions:

“Brain imaging may show isolated ventral pontine infarction, and nerve conduction studies may demonstrate severe peripheral neuropathy. Positron-emission tomographic (PET) scans have shown higher metabolic levels in the brains of patients in the locked-in state that in patients in a persistent vegetative state. Electroencephalograms, evoked responses, and single-photon-emission computed tomograms do not distinguish reliably between the locked-in and vegetative states.” [lxxxix]

Thus they are left with one practical criterion to distinguish between PVS and ‘locked-in syndrome’, namely PET scans. However, the Task Force members themselves are clearly aware of the limitations of PET scans as a diagnostic tool; the report states:

“Although these studies demonstrate substantial reductions in the metabolism of glucose, there is not yet sufficient information to warrant the use of PET scanning to determine prognosis.” [xc]

Furthermore, their recommendations for future research projects note that:

“A confirmation of the absence of evoked activity on the PET scan would also help defend the assertion that patients is a persistent vegetative state are completely unaware and insensate.” [xci]

Earlier in this thesis[xcii] it was shown that, in the view of various authorities on PVS, PET scans are of, at best, limited usefulness in the diagnosis of PVS. McQuillen, for example, states that the inference drawn from PET scans:

“... is that cognitive function is lost because the regional cerebral metabolic rate for glucose is less than half the normal value.” [xciii]

McQuillen points out that because the comparable rate for infants ‘... whose cognition can only be inferred by motor movements not unlike those manifested by the patient in the ‘vegetative state’.’ [xciv] is in excess of healthy adults, such inferences must be treated with caution. Andrews did not use PET scans in his study on the misdiagnosis of PVS; which is, in itself, eloquent testimony to their inconclusiveness.[xcv]

Thus, the inclusion by the Multi-Society Task Force of the ‘frozen-aware’ cases within the ‘locked-in syndrome’ category necessitated the abandonment of any definitive practical criterion for distinguishing between PVS and ‘locked-in syndrome’ in favour of retaining a definitive theoretical criterion namely ‘lack of consciousness’. The ‘possession of consciousness’ thus becomes the primary diagnostic criterion with ‘ability to communicate’ secondary. This reverses the original order used by Jennett and Plum where - as I have argued in Section 1 - ‘ability to communicate’ is the primary criterion and ‘possession of consciousness’ is at best secondary.

Conclusion _{4 -8} : The Multi-Society Task Force acknowledge the existence of patients who are aware but show no behavioural manifestations of awareness [the ‘frozen aware’]. In categorising these patients as cases of Locked-In Syndrome, rather than PVS, the coherence of the criteria used to diagnose Locked-In Syndrome is damaged.

__________

Further evidence of the confusion implicit in the Task Force’s analysis of the distinction between PVS and Locked-In Syndrome is evident when - in arguing that PVS patients have no awareness - they seek to buttress their case by stating:

“Almost all such patients [i.e. PVS patients] have some degree of motor activity and eye movement that would be capable of signalling conscious perception of pain if such existed.” [xcvi]

The Task Force seem oblivious to the contradiction implicit in this statement, because if such a patient could signal by eye movement then, by definition, they would no longer be PVS but be ‘locked-in syndrome’.[xcvii] Their statement continues, achieving something of a volte-face:

“In rare cases, it may be difficult to distinguish a persistent vegetative state from a severe locked-in state. Under such unusual circumstances, a patient may not be able to express behavioural responses to painful stimuli ... the absence of response cannot be taken as proof of the absence of consciousness.” [xcviii]

As to the theoretical reasons for believing that such cases of misdiagnosis are rare the report is silent. Section 3 of this chapter will show that misdiagnosis of PVS, far from being ‘rare’ and ‘unusual’ is so common as to approach the norm.

The Institute of Medical Ethics working party on the ethics of prolonging life and assisting death

PVS and the possibility of recovery

The report of the working party has already been mentioned[xcix] as has their conclusion that:

“No diagnostic test can indicate that a patient is permanently vegetative. … The diagnosis therefore depends on careful clinical observation over several weeks.” [c]

Despite this conclusion the report did not hesitate to state that:

“Patients in a persistent vegetative state have permanently lost the function of the cerebral cortex.” [ci]

They discussed the withdrawal of life-supporting medical treatment from patients:

“... whose condition has been diagnosed with certainly as permanent.” [cii]

By adopting such a terminology the possibility of a PVS patients recovering, is explicitly denied.

PVS and the Locked-In Syndrome

The working party did not discuss the Locked-In Syndrome.

PVS and consciousness

The working party’s view on the possibility of PVS patients being conscious is implicit in their statement, just quoted, that such patients have permanently lost the function of the cerebral cortex. It is also implicit in their statement on the possibility of such patients experiencing pain:

“Vegetative state patients are not suffering, because the mechanisms for suffering have been destroyed.” [ciii]

In a further quotation which culminates in a marvellously surrealistic non-sequitor:

”We agree with the American view that there is no remaining neurological mechanism to make pain or suffering possible, and that good oral hygiene can be maintained by appropriate nursing care after food and fluids have been withdrawn.” [civ]

Terminology

The working party considered that the reluctance of some families to agree to treatment withdrawal in cases of PVS, was based on an unfounded optimism:

“... a view which may be encouraged by some carers. ... the working party believes it is unfair and unkind to allow such optimism to be sustained.” [cv]

The report urges professional bodies to publicly acknowledge the appropriateness of treatment withdrawal in cases of PVS; [cvi] not to withdraw treatment from PVS patients could be to the detriment of other patients:

“The economic and social consequences of indefinite treatment of vegetative patients may also mean that the … resources they receive … are denied to other patients who could benefit.” [cvii]

The working party’s unqualified use of the term ‘permanent’ in its discussion of PVS appears to be a tactic designed to diminish such ‘unfounded optimism’; however, it also functions as a denial of the fact that PVS is not necessarily permanent and that it is prone to a high level of misdiagnosis.[cviii]

Conclusion _{4 -9} : The use by the Institute of Medical Ethics of the term ‘permanent’ in relation to PVS whist omitting any reference the possibility of recovery, or to the high level of misdiagnosis associated with that condition, is disingenuous.

Attempts to ‘adjust’ the truth, whether explicitly or by more subtle means, so that certain aims be more readily accomplished bespeaks a paternalism which cannot be justified irrespective of how well-meaning the intent, or how ‘good’ the goals. In that the ‘Institute for Medial Ethics’ is the author of such attempts, it is to be especially deplored.

The British Medical Association Guidelines

The BMA Guidelines noted the distinction made by the Royal College of Physicians between ‘continuing vegetative state’ and ’permanent vegetative state’;[cix] however, the BMA decided not to adopt that terminology:

“For the present time at least, the BMA retains the term ‘persistent’ rather than ‘permanent’ but continues to keep the arguments and the evidence under review.” [cx]

All, however, is not as it seems. The BMA position in relation to the naming of PVS is best explained by contrasting it with that of the Multi-Society Task Force. The Task Force, as mentioned earlier,[cxi] considered that:

“Persistent vegetative state is a diagnosis; permanent vegetative state is a prognosis.” [cxii]

and that:

“On the basis of these probabilities, a persistent vegetative state can be judged to be permanent 12 months after a traumatic injury in adults and children; recovery after this time is exceedingly rare and almost always involves a severe disability.” [cxiii]

In the previous section a distinction was introduced[cxiv] between two uses of the term ‘permanent’; the first is where occasional, perhaps rare, exceptions are allowed; this was called the statistical use and was denoted by permanent_S. The second use is where no exceptions are permitted; this was called the logical use and was denoted by permanent_L. The Multi-Society Task Force clearly uses the term ‘permanent’ in the sense of permanent_S. Next, consider a patient diagnosed as PVS who, after 12 months in that condition,[cxv] recovers; according to the Multi-Society Task Force analysis, although the prognosis for this patient was incorrect, the diagnosis of PVS is not invalidated. The situation is theoretically no different from that of a patient who was correctly diagnosed as having a broken ankle and who was told that it would take 6 weeks to heal whereas in fact it took 8 weeks. Let us now attempt to outline the BMA analysis.

Though the BMA noted that:

“Current methods of diagnosing PVS cannot be regarded as infallible.” [cxvi]

and that it:

“... has consistently recommended that the diagnosis of irreversible PVS should not be considered confirmed (and therefore treatment not withdrawn) until the patient has been insentient for 12 months.” [cxvii]

These guidelines speak of a ‘diagnosis’ and of ‘irreversible PVS’; these terms need further examination. On a first reading, the guidelines appear to be essentially equivalent to the Multi-Society Task Force recommendations with the term ‘irreversible’ used in place of ‘permanent’; it is possible to suggest that they are even more ‘liberal’ in that the use of the term ‘irreversible’ is not automatically permitted after 12 months of being diagnosed as PVS but requires further clinical confirmation. On this interpretation, though ‘irreversible PVS’ is spoken of as a diagnosis, it is in reality a prognosis, and although ‘irreversible’ is equivalent to, or even stronger than, ‘permanent’ in its connotations it should be understood in the sense of permanent_S rather than permanent_L. This however is not the BMA’s position:

“An enduring cause for concern, however, have been the intermittent reports of alleged ‘recovery’ from PVS. In the BMA’s view, recoveries, where they can be verified, indicate an original misdiagnosis.” [cxviii]

It is indeed difficult to find a coherent interpretation of the BMA position.[cxix] Had the passage just quoted spoken of alleged recovery from ‘irreversible PVS’ then, though the terminology used might be open to criticism, the BMA’s position would have been tenable. It would have been that within the condition ‘PVS’, a subgroup of patients can be defined who never recover; such patients are said to suffer from ‘irreversible PVS’; if one of such patients recovered then this might indeed be described as a case of ‘misdiagnosis’ - however the misdiagnosis would relate to ‘irreversible PVS’ and not to PVS. There is evidence for such an interpretation elsewhere in the guidelines as, for example, when the BMA speaks of other discrete conditions within the broad ambit of the PVS condition itself:[cxx]

“... recognises that distinction can be drawn between different categories of PVS patients depending on factors such as patient’s age …” [cxxi]

But such an interpretation is in effect a rewriting of the guidelines in an attempt to impose coherence. The guidelines do not speak of recovery from ‘irreversible PVS’ being a misdiagnosis, they speak of recovery from PVS simpliciter being a misdiagnosis.[cxxii] Furthermore it is not open to suggest that the adjective ‘irreversible’ is implied by the context, because the passage on misdiagnosis, just quoted, occurs before any mention of irreversibility.

In a short document which was written for the guidance of medical practitioners such ambiguity is inexcusable. The guidelines incorporate not only ‘permanence’ but ‘permanence_L’ into the definition of PVS, but unlike the President’s Commission or The Royal College of Physicians, not into the title; in doing this, although arguably sticking to the letter of the recommendation of the Task Force that the distinction between ‘diagnosis’ and ‘prognosis’ not be blurred, they entirely miss its point.

Jennett and Plum in their 1972 paper sought to identify an irrecoverable state;[cxxiii] and certainly such an identification would ease considerably the ethical and socio-economic problems[cxxiv] associated with the management of PVS patients. They were, however, of the opinion that medical science was not yet sufficiently advanced to permit such prognosis and that, until then, ‘persistent’ was a more appropriate term than either ‘permanent’ or ‘irreversible’. Their intention was:

* to find a criterion to distinguish between PVS and ‘locked-in syndrome’; this they found, despite some appearances to the contrary, in the ‘ability to communicate’.

* to find criteria which when applied to those diagnosed as PVS, would permit the original presenting condition to be partitioned into two distinct conditions - ‘permanent PVS’, which was an irrecoverable condition, and ‘non-permanent PVS’ which presumably would, in time, be given a different name, so that it would then be possible to speak of all PVS as permanent.

It is important to recognise that the goal of the analysis suggested by Jennett and Plum would envisage three competing medical conditions being identified:

* Locked-In Syndrome

* ‘Permanent’ PVS

* ‘Non-permanent’ PVS

The BMA have attempted to achieve the goal set by Jennett and Plum by a definitional fiat. This is a double subterfuge in that they have not only attempted to incorporate permanent_L into the definition of PVS - so that it then becomes possible to state that recovery from PVS is logically impossible - but they have left those who having been diagnosed as PVS and then recovered in a state of diagnostic limbo. The question ‘What would have been the correct diagnosis for such patients?’ uncovers the Achilles heel of the BMA analysis. The BMA in its guidelines, offers no answer; in fact it does not even acknowledge that there is a question. In order to have a term to describe such patients, let us say that they were suffering from ‘pseudo-PVS.’ Is ‘pseudo-PVS’ a new condition, or an existing condition? What are the diagnostic criteria for ‘pseudo-PVS’? Not surprisingly there are none. ‘Pseudo-PVS’ plays a role similar to that of the imaginary debtor in fraudulent bookkeeping: it allows the books to be ‘balanced’ and all inconvenient anomalies to ‘disappear’. If the Task Force encountered difficult waters in its insistence that the ‘frozen-aware’ suffered from ‘locked-in syndrome’, then the BMA has truly muddied these waters; because, in the absence of creating a new diagnostic category, the only possible category open for ‘pseudo-PVS’ patients - since they are, by definition, not PVS - is the Locked-In Syndrome. The source of the confusion in the BMA position is the logical error - warned against by Drury - of unjustifiably assuming that a classification is ‘mutually exclusive and completely exhaustive’.[cxxv]

Some consequences of the BMA’s redefinition of PVS

* The coherence of the definition of Locked-In Syndrome is seriously eroded. The hallmark of the condition - the ability to communicate by eye blinks - must be relinquished because this ability is manifested neither in the ‘pseudo-PVS’ nor in the ‘frozen aware’. How then should the Locked-In Syndrome be defined? This was not addressed by the BMA in its guidelines, and there is no obvious solution. It seems that by attempting to solve one problem another, even greater one, has been created.

* The description of PVS as ‘irrecoverable’ becomes the justification for treatment withdrawal. As a consequence, the scientific investigation of whether the condition is, in fact, irrecoverable become impossible. A self-fulfilling, self-validating, process has been set in motion.

* A further consequence of the BMA position is that any attempt to conduct research amongst recovered ‘PVS’ patients in an attempt to resolve the question of whether PVS patients have any level of consciousness, or can experience pain, is immediately invalidated on a priori grounds because such patients were, by definition, misdiagnosed; they were not PVS. Accordingly whether they were conscious or felt pain, is of no relevance to the question of whether PVS patients are conscious or can experience pain.

* By means of the linguistic device adopted by the BMA, a medical professional could unhesitatingly assert that recovery from PVS was logically impossible. He could then unequivocally recommend treatment withdrawal. Such word play would also permit the BMA to state that never has a PVS patient recovered. This last proposition wears the mask of a meaningful proposition but is in fact no more than a tautology. The President’s Commission spoke of the ‘permanent’ vegetative state but allowed for cases of recovery from PVS; the BMA analysis has, by a subterfuge, reached precisely the opposite conclusion.

Conclusion _{4 -10} The suggestion by the BMA Guidelines that patients who recovered, having been previously diagnosed as PVS, were to be classified as cases of misdiagnosis is destructive of honest debate. Furthermore, in that such patients are implicitly reclassified as being Locked-In Syndrome patients, the coherence of the definition of the Locked-In Syndrome is threatened.

Section 3: The misdiagnosis of PVS

The extent of the misdiagnosis of PVS has, in recent years, been the focus of a number of studies, and articles, published in the learned journals;[cxxvi] four such studies have been summarised in Appendix A.[cxxvii] The aim of this section is to draw some conclusions from these sources; these conclusions are arranged under a number of headings:

* The extent of the misdiagnosis of PVS as disclosed by these studies.

* The reasons for the misdiagnosis suggested by these studies.

* Some terminological issues arising from the studies.

The extent of misdiagnosis.

The aim of this subsection is to find a global estimate of the extent of misdiagnosis of PVS. The rates of misdiagnosis[cxxviii] found in the studies discussed in Appendix A, are shown in the Table 4-1:

Study	Rate of Misdiagnosis
The Tresch Study (1990)[cxxix]	18%
The Childs Study (1992)[cxxx]	37%
The Andrews 1993 Study[cxxxi]	23% - 26%*
The Andrews 1996 Study[cxxxii]	43%

* One patient recovered awareness but not the ability to communicate.

Table 4-1: The rates of misdiagnosis as determined by various studies.

It is possible to take the simple arithmetical average of these rates as our estimate; this gives a rate of 31%.[cxxxiii] A more accurate estimate can be found by weighting each percentage in proportion to the number of patients in the respective survey; [cxxxiv] thus surveys with a small patient population would not be disproportionately represented in the final result. Such a weighted average is calculated according to the Table 4-2:

Study	The number diagnosed as PVS	The number misdiagnosed
The Tresch Study	62	11
The Childs Study	49	18
The Andrews 1993 Study	43	11
The Andrews 1996 Study	40	17
Totals:	338	110
Weighted average rate of misdiagnosis:	29.38%

Table 4-2: The weighted average rate of misdiagnosis.

The above methods of obtaining a global estimate of misdiagnosis are open to criticism for two reasons:

(i) firstly, they are essentially mechanical methods of aggregating results which are based on the assumption that, as global estimates of misdiagnosis, the studies are equally worthy of respect.

(ii) secondly, a fundamental point concerning the measuring of the misdiagnosis of awareness - and that is, essentially, what these surveys are concerned with - has been ignored. The point is that because of the nature of the test for determining that awareness is present - which is, for example, that the patient sounds a buzzer a number of times in response to a command to do so[cxxxv] - the risk of diagnosing that awareness is absent, when it is not so, is much greater than the risk of diagnosing that awareness is present when it is, in fact, absent. The latter risk is negligible in comparison to the former.[cxxxvi] It follows that within a population of patients diagnosed as PVS - as is the case in all the above studies - the risk of a false positive re-diagnosis of PVS is considerably greater than a false negative. Hence the misdiagnose rates should not to be interpreted as indicative of the true rate of misdiagnosis (i.e. plus, or minus, some percentage error) but rather as indicating absolute minimum rates (i.e. plus some percentage error).

Conclusion _{4 -11} The rates of misdiagnosis determined by various studies should not be interpreted as indicative of the true rate of misdiagnosis but rather as indicating absolute minimum rates.

This implies that the best indicator for the rate of misdiagnosis is the maximum rate of diagnosis found in any of the studies[cxxxvii] (i.e. 43%) rather than the rate of misdiagnosis found by averaging over the studies (i.e. either 29.4% or 31%).

This conclusion can be buttressed by arguments from another direction: that is, by comparing the individual studies and showing that the Andrews (1996) study - and consequently the misdiagnosis rate of 43% - should be accorded a greater authority than the other studies. Let us briefly examine the different studies with a view to comparing the authority that should be accorded them as being global estimates of the misdiagnosis of PVS.

The Tresch Study[cxxxviii]

The Tresch study was not directly concerned with estimating the misdiagnosis of PVS, but rather with determining the clinical characteristics of patients who were diagnosed as PVS. Thus, the primary aim was not to determine whether, or not, some patients were aware. If, in the course of the study, it was found that some patients were aware then, of course, they could no longer be considered to be PVS. The goal of the study, however, was, given a group of patients diagnosed as PVS, to establish the proximate cause of the condition.[cxxxix] We are told neither the extent, nor the duration, nor the type of tests used to determine awareness; the impression is given that the awareness of these 11 misdiagnosed patients was patent. This contrasts with the much more exhaustive and thorough tests used to determine awareness in the Andrews (1996) study. Furthermore, the test population was derived from patients in nursing homes as distinct from hospitals; many of the patients were old: the mean age of the patients was 64.8 years,[cxl] 25% suffered from dementia with a mean age of 85.[cxli] The study expressed surprise at the high level of dementia[cxlii] amongst the test population and at the use of anti-psychotic drugs and H₂- blockers[cxliii] which ‘was so common’[cxliv] in their treatment. Each of these factors would tend to militate against a finding of awareness and consequently of misdiagnosis.

The Childs Study[cxlv]

The Childs study allowed themselves a seven day period to determine the existence of misdiagnosis:

“This 7-day period was established, a priori, as the cut-off period for a post-admission diagnosis.” [cxlvi]

This short cut-off period, whilst it may minimise the possibility of ‘recovery’ being mistaken for ‘misdiagnosis’, may also clearly result in cases of misdiagnosis not being acknowledged as such. Furthermore, the thoroughness of the tests used to determine awareness is not discussed. As in the Tresch study, the impression is again given of a procedure designed to determine awareness when it is obviously present, rather than a method to uncover awareness when it exists, but without any obvious manifestation. It would be expected that such a study would result in an under reporting of the rate of misdiagnosis.

Andrews (1993)[cxlvii]

This study was a retrospective review of the case notes of 43 patients admitted to a unit specialising in the rehabilitation of PVS patients:

“The case notes of 11 of these patients showed that they had been in a persistent vegetative state for at least four months before showing a return to awareness ...” [cxlviii]

The study was concerned with ‘recovery’ rather than ‘misdiagnosis’. The insistence by the BMA that cases of recovery are actually cases of misdiagnosis[cxlix] considerably complicates this discussion but does make the Andrews study relevant to a discussion of misdiagnosis. However, in so far as the Andrews (1996) study is directly concerned with misdiagnosis as distinct from recovery,[cl] its results are of greater relevance. It is also to be preferred on grounds of reliability as it is a direct study and not a retrospective review of case notes.

Andrews (1996)[cli]

In this study the tests used to determine patient awareness were considerably more thoroughgoing than was the case in either the Tresch, or the Childs, studies:

“Patients received two half hour occupational therapy sessions a day for six weeks to assess responses to sensory stimulation and to identify the most reliable responses to command.” [clii]

Because of this it is to be expected that the misdiagnosis rate would be higher than that found in these other studies. This was indeed the case.

Furthermore, the study noted that:

“... patient’s awareness is nearly always identified first by the occupational therapists and then by the clinical psychologist, and only later is communication achieved by the other members of the team.” [cliii]

This may help explain why patient awareness might not have been noticed by teams with a less interdisciplinary composition. The team also found more cases of misdiagnosis in 1995 than in previous years; this they attributed to the additional experience and increased sensitivity gained by the team in the previous years. Also the initial assessment period used by the Andrews team to determine misdiagnosis was 6 weeks, this contrasts with the 7 day period in the Childs study. The accumulation of these factors - an interdisciplinary team, considerable experience in detecting awareness and an extended period of assessment - help explain the disparity in levels of misdiagnosis shown in Table 4-1; they also indicate that, of the various studies, the Andrews (1996) rate of 43% is the most reliable estimate of misdiagnosis.

It was mentioned earlier[cliv] that this rate should, because of the nature of the methods used to determine awareness, be interpreted as a minimum; in relation to the Andrews(1996) study, there are two additional reasons why this should be so:

(i) The original diagnosis in the Andrews(1996) study was made, in most cases, by a neurologist, neurosurgeon, or rehabilitation specialists - ‘all of whom could have been expected to have experience of vegetative state.’ [clv] In contrast, in the Tresch study the original diagnosis was by nursing home personnel (both nurses and physicians). It would seem that the original diagnosing personnel in the Andrews(1996) study were exceptionally well qualified; a higher rate of misdiagnosis is to be expected when the original diagnosis is made by physicians of less eminence and experience.

(ii) The tests used in the Andrews (1996) study required the patients to respond to verbal commands. Thus, the estimate for misdiagnosis is an underestimate to the extent that any patient who had awareness but also had impaired hearing, was excluded.[clvi] However, the study found evidence of visual impairment in excess of what they had expected;[clvii] accordingly it seems unreasonable to assume that only hearing unimpaired patients were misdiagnosed.

If these factors are incorporated into the estimate for misdiagnosis then the conclusion that he misdiagnosis rate for PVS is of an order of magnitude of 50% appears to be justified. This is equivalent to the rate of misdiagnosis that would be expected if diagnosis was performed by a purely random process.

Conclusion _{4 -12} The best estimate for the rate of misdiagnosis of PVS is of the order of 50%. This implies that the diagnosis of PVS is essentially a random process.

Lest this be considered an extreme conclusion, Andrews statement should be noted:

“... 10 years’ experience of training relatives of more than 250 patients in a persistent vegetative state to use a programme of stimulation ... only 4% of patients did not improve; one third became functionally independent.” [clviii]

This statement does not distinguish between ‘recovery’ and ‘misdiagnosis’, however - in the context of the BMA’s statement that recovery is necessarily misdiagnosis - it suggests a misdiagnosis rate of 33% as an absolute minimum.

The reasons suggested for the misdiagnosis.

The Tresch study noted the extent of misdiagnosis, as it were in passing; its focus lay elsewhere. No reasons were suggested for the occurrence of the misdiagnosis, nor were opinions offered as to what might have been the correct diagnosis.[clix]

The Childs study, in contrast, did suggest reasons for the occurrence of misdiagnosis; one such reason was the lack of diligence by staff in observing changes in patient behaviour.[clx] However, the study found that the most important reason for the misdiagnosis lay in the use of inappropriate and confusing terminology:

“We suspect that misdiagnosis in most of these patients was due to the confusion in the terminology used to describe alterations in states of consciousness in the brain injured ... Confusion over terminology may have caused misapplication of the diagnosis of PVS in most of our patients.” [clxi]

The report found that PVS was ‘an area fraught with confusion’.[clxii] Eloquent testimony to the extent of the confusion lies in the reports observation that the original diagnostic teams used the terms ‘coma’ and ‘PVS’ ‘inconsistently and interchangeably’ [clxiii] as if they had been unaware that:

“Coma is an eyes-closed state of unresponsiveness whereas in PVS the eyes are open but there is no awareness.” [clxiv]

The report was insistent on the need for appropriate terminology and clarity of definition:

“There is a need for consensus in description and definition of PVS. If we do not adhere to a strict and precise definition of PVS then confusion and misdiagnosis will follow.” [clxv]

The need for precise and appropriate terminology was also emphasised in the Grubb reports;[clxvi] and in the Andrews(1992) paper.[clxvii]

The Andrews (1996) study isolated ‘determination of awareness’ as the primary stumbling block to a correct diagnosis. They noted:

“... how difficult it can be, even for experienced clinicians, to diagnose cognitive ability in the presence of profound physical disabilities ...” [clxviii]

The report commented on the fact that even though some of the misdiagnosed patients had a ‘nearly normal’ cognitive ability:[clxix]

“... none of the professional carers had recorded any evidence of meaningful responses.” [clxx]

Conclusion _{4 -13} : The reasons suggested by the studies on misdiagnosis of PVS for its occurrence are inappropriate terminology, imprecise definition of PVS and overly primitive procedures for determining awareness.

As mentioned earlier, the Andrews(1996) team relied on occupational therapists and psychologists, rather than medical specialists, to first establish the existence of awareness:

“... patient’s awareness is nearly always identified first by the occupational therapists and then by the clinical psychologist, and only later is communication achieved by the other members of the team.” [clxxi]

Throughout the Andrews 1996 report - as in this last quotation - the terms ‘awareness’ and ‘ability to communicate’ are used interchangeably as if they were synonyms; this they clearly are not. However, in this felix culpa I suggest that the report unwittingly found the key to help unravel the confusion associated with PVS. One of the proposals of this thesis is that PVS be defined in terms of ‘inability to communicate’ and not in terms of ‘lack of awareness’.[clxxii] The use of a buzzer by the Andrews team is clearly,[clxxiii] and primarily, a test of the ability to communicate, as is clearly seen in cases where awareness is present and ability to communicate is absent. Only incidentally is it a test of awareness, notwithstanding that Andrews called it such.

Conclusion _{4 -14} : The Andrews 1996 study on misdiagnosis used ‘ability to communicate’ as a surrogate for ‘possession of awareness’.

Cranford criticises the Andrews (1996) study because it does not explain how its conclusion that the misdiagnosed patients were not vegetative at the time of admission, could be justified.[clxxiv] Cranford spoke of the need to distinguish between ‘late recovery’ and ‘late discovery’ of consciousness.[clxxv] Andrews had anticipated[clxxvi] this criticism; however his argument is unconvincing.[clxxvii] Indeed, Andrews’ argument, and Cranford’s response, are indicative of a deep underlying confusion between the concepts of ‘misdiagnosis’ and ‘recovery’; a confusion which is exacerbated by the BMA’s insistence that cases of recovery are to be classified as cases of misdiagnosis.[clxxviii] Ironically, the BMA’s position is the very obverse of Cranford’s position. This again brings the choice of appropriate terminology to centre stage; it shows that the need for a re-evaluation of the terms used in discussions concerning PVS is pressing and it is to this that we now turn.

Some terminological issues.

PVS is defined by Jennett and Plum not in terms of ‘the absence of consciousness’ but in terms of ‘the absence of consciousness judged behaviourally’. This distinction implies that there are patients who are conscious but who do not manifest ‘conscious behaviour’.[clxxix] The Multi-Society Task Force on PVS, for example, recognised such a possibility but countered by asserting that such cases were rare.[clxxx] It is, however, not the rarity of such patients but their theoretical existence that is of importance if clarity of debate is to be achieved.

The distinction between

(i) ‘the absence of consciousness’ and

(ii) ‘the absence of consciousness judged behaviourally’

may seem trivial, but it goes to the heart of the problem of misdiagnosis, and, in particular, to the dispute between Andrews and Cranford as to whether the cases uncovered by Andrews, were cases of misdiagnosis or cases of recovery. This is so because if PVS is defined as ‘the absence of consciousness judged behaviourally’, then in considering a patient who at a particular time (T) was conscious, though unable to manifest this behaviourally - and was accordingly judged to be in a PVS; but who at a later time (T+) manifested this consciousness behaviourally - and was accordingly judged not to be in a PVS - it necessarily follows that such a patient was not misdiagnosed at time (T).

The relationship between the terms ‘recovery’ and ‘misdiagnosis’, and the differing definitions of PVS is shown in the following tables:

At time	Consciousness	Consciousness manifested in behaviour	Diagnosed as PVS	Diagnosis at T:- a misdiagnosis or a recovery?
T	present	absent	yes
T+	present	present	no	a misdiagnosis

Table 4-3: The scenario if PVS is defined in terms of ‘lack of awareness’.

At time	Consciousness	Consciousness manifested in behaviour	Diagnosed as PVS	Diagnosis at T:- a misdiagnosis or a recovery?
T	present	absent	yes
T+	present	present	no	a recovery

Table 4-4: The scenario if PVS is defined in terms of ‘lack of awareness judged behaviourally’.

Andrews, in speaking of a specific patient, said that:

“... we did not identify his responses until 25 weeks after his admission, though it was obvious from subsequent conversations with him that he had not been vegetative for some time.” [clxxxi]

Andrews subsequently classified this patient as ‘misdiagnosed’, this was done without showing that the patient had exhibited, at the time of his original diagnosis, behaviour which should have been attributed to awareness; this bespeaks a looseness in the use of language which is unhelpful in a debate which is already confused.

In his 1993 study, Andrews speaks of ‘recovery’ from PVS and not ‘misdiagnosis’, whereas in his 1996 study he used the term ‘misdiagnosis’. These terms have a radically different connotation. However, it would seem that, depending on the definition of PVS adopted, they may both be applied to precisely the same clinical situation. It is of great importance that the relationship between the definition of PVS and the choice of terminology ‘recovery’/’misdiagnosis’ is made explicit as the connotations of these terms exert a considerable dominance on the debate on PVS. This is clearly evidenced by, for example, the insistence of the BMA that recovery from PVS is not logically possible and that the term ‘misdiagnosis’ is the appropriate term.

The confusion between ‘misdiagnosis’ and ‘recovery’ is exacerbated by the fact that both of these terms are ambiguous. At least three distinct meaning of the term ‘misdiagnosis’ can be identified; and at least two meanings of the term ‘recovery’. Furthermore, if in particular circumstances, misdiagnosis is regarded as the appropriate term then it is appropriate to ask as to what the correct diagnosis should have been; yet this is a problem which has been consistently ignored and for which, in most cases, no satisfactory answer is forthcoming. The discussion on possible conditions which could/should have been diagnosed in situations where PVS was misdiagnosed, is more usefully conducted in a context of proposals for an alternative definition of PVS; both these discussions are placed in Section 5.

The remainder of this section looks at ambiguities, first in the use of the term ‘misdiagnosis’, then in the term ‘recovery’; it then considers an individual case - that of Andrew Devine - who was a patient of Dr. Andrews; this case is of special interest at this point because of Dr. Andrews’ insistence that this was not a case of misdiagnosis but one of recovery.

Ambiguities in the term ‘misdiagnosis’

The term ‘misdiagnosis’ can mean either that

(i) a patient diagnosed as PVS was, at the time of diagnosis, in fact conscious; or

(ii) a patient diagnosed as PVS manifested, at the time of diagnosis, ‘conscious behaviour’ which was not interpreted as such, by the physician; or

(iii) the physician did not interact - i.e. stimulate and observe - sufficiently with the patient to elicit possible ‘conscious behaviour’ before he diagnosed the patient as PVS.

Neither Andrews nor Cranford address these ambiguities. Both appear to accept the first suggested meaning though it may be that Andrews, in using the term ‘misdiagnosis’, wished to emphasise the third - that is, that he considered the original examination of patient’s behaviour to have been unduly cursory; which - in comparison with the programme of patient stimulation, and diligent observation, carried out by the Andrews (1996) team - the original examinations undoubtedly were. Perhaps the problem here, as in so much else connected with PVS, lies with terminology. The phrase ‘absence of consciousness judged behaviourally‘ does not indicate that the role of the observing clinicians should be other than as a passive observer, it does not imply an active process of stimulation as, for example, was carried out by the Andrews (1996) team. Neither does the term suggest that an ongoing process of interaction is what is required.

The phrase ‘inability to communicate’, in contrast, does imply a judgement made at the end of a long process of attempted interaction. The emphasis on ‘communication’, which permeates Andrews paper, suggests that a better definition of PVS is to be found using the concept of ‘communication’ rather than the concept of ‘behaviour’.[clxxxii] Such a definition would actively encourage the process of sustained interaction with patients which is of such obvious importance.

Andrews has commented that:

“It is disturbing to think that some patients who were aware had for several years been considered to be, and treated as being, vegetative.” [clxxxiii]

and Cranford noted that:

“It would be dreadful indeed to stop treatment in patients who were thought to be unconscious but who could in fact experience thirst and hunger when treatment, including artificial nutrition and hydration, was stopped.” [clxxxiv]

Certainly efforts to reduce the level of misdiagnosis must be welcomed. However, a much more radical approach is needed to ensure that the scenario described by Andrews and Cranford of a conscious patient being treated as being unconscious, does not occur. One of the proposals of this thesis is to treat all PVS patient as if [clxxxv] they were conscious and could experience pain.[clxxxvi] Such a proposal would, if adopted, obviously suffice; furthermore, it would lessen the importance of correctly distinguishing between misdiagnosis and recovery.

Ambiguities in the term ‘recovery’

In relation to PVS patients, two senses of the term recovery can be identified:

(i) recovery of consciousness as manifested by behaviour;[clxxxvii]

(ii) recovery of the capacity to lead a so-called ‘meaningful life’.

Many authors use the term ‘recovery’ in its second sense. Raanan Gillon, for example, was quite scathing in his criticism of Andrews’ use of the term ‘recovery’:

“These include a patient who, after three years in the persistent vegetative state, recovered sufficient consciousness to smile at cartoons, to show pleasure when his wife was present, and to show distress when she was absent.” [clxxxviii]

Cranford appeared to agree with Gillon, when he suggested that most people would find the position of the 17 misdiagnosed patients, who were found to be conscious and severely disabled, to be:

“... far more horrifying than the vegetative state itself, and some might think it an even stronger reason for stopping treatment than complete unconsciousness.” [clxxxix]

This was a view which also found an echo in the judgement of Lynch J., in the Ward Case.[cxc] The different meanings of the term ‘recovery’ are also implicit in Grubb’s questioning of his respondent, as to whether various predicted outcomes which left the patient severely disabled and dependent on their carers, would justify the withdrawal of treatment.[cxci]

It seems clear that many doctors faced with outcomes, such as described by Gillon or Cranford or Grubb, would not describe them as ‘recoveries’.[cxcii] This is of importance as it shows that the term ‘recovery’ is being used not simply as medical concept wholly amenable to, and resolvable by, scientific methods, but that it also embodies ideas of value whereby some types of lives are considered valuable and others less so. Used in such a fashion the term has an essential core which is amenable only to an ethical analysis. Often the different meanings are not distinguished, and the ethical issues are not acknowledged. Problems are portrayed as purely medical or ‘scientific’ matters amenable to a purely technical solution. It is important that the technical and ethical questions be disentangled and not resolved by some fudging of the terms ‘recovery’ or 'quality of life'. To this end I suggest that the ethical questions and the technical questions be considered separately.

Conclusion _{4 -15} : It is imperative that the ethical content of the term ‘recovery’ be recognised and made explicit, and that it not be considered to be a term amenable to a purely technical solution.

Strictly speaking, the term ‘recovery’ as applied to a PVS patient can only[cxciii] mean the recovery of the ability to manifest consciousness behaviourally. Used in such a fashion the term ‘recovery’ is a purely technical term. The value of the life recovered is a separate question; to attempt to include some minimal measure of the value of the life is to muddy the waters. Such questions are certainly of great importance, both clinically and ethically, but clarity of discussion is not served by compounding these questions and treating them as if they were one.

The ethical aspect of the problem relates to the nature of the life recovered - whether it was in the ‘best interests‘ of the individual concerned - and whether the treatment, which such recovery required, was a worthwhile use of scarce resources. The first of these questions is discussed in Chapter 7 where a distinction is made between ‘absolute quality of life’ and ‘incremental quality of life’ judgements; the former being judgements which attempt to place a value on the totality of a life.[cxciv] The concept of ‘a good death’ is introduced in Chapter 9; it is there argued that the achievement of ‘a good death’ for a patient can, in certain closely defined circumstances, be a good. Such a principle implies that, in certain circumstances, the non-treatment of a patient may be a ‘good’ even though death is the inevitable result of such non-treatment. A necessary criterion for the ascription of personhood is established in Chapter 10; this also has relevance to treatment decisions in circumstances where the ability of the patient to communicate is permanently lost.

These concepts (‘absolute quality of life’, ‘incremental quality of life’, ‘a good death’ and ‘personhood’) allow ethical issues and the technical question of establishing the likely effects of treatment in an individual case, to be separately addressed.[cxcv]

The Case of Andrew Devine[cxcvi]

Andrew Devine, like Tony Bland, was a victim of the Hillsborough tragedy. He had been in a PVS state for eight years before he recovered sufficiently to be able to use an electronic buzzer to communicate. Commenting on the case Dr. Andrews said:

"We have considerable experience of diagnosing patients in the vegetative state. We have observed Andrew over a number of years and he certainly did not fit into the criteria for misdiagnosis." [cxcvii]

In suggesting that this was a case of recovery rather than misdiagnosis, the reasoning was no doubt that, as a patient of Dr. Andrews, Andrew Devine had benefited from the stimulation/observation regime used by Dr. Andrews.[cxcviii] Though this is somewhat at odds with his earlier usage of the term ‘misdiagnosis’ in connection with Patient B of the 1996 study,[cxcix] it confirms his usage of the term ‘misdiagnosis’ as being the third of those senses of misdiagnosis identified earlier[cc] - i.e. ‘the doctor did not interact - i.e. stimulate and observe - sufficiently with the patient to elicit possible ‘conscious behaviour’ before diagnosing the patient as PVS.’

Dr. Andrews also stated that:

“PVS is not a concrete diagnosis. It's a continuum from a coma through different levels of vegetative state. We cannot think of being in a vegetative state as a black-and-white situation.” [cci]

This statement echoes a statement[ccii] in the original Jennett and Plum article but which has not featured in academic writing on PVS in the intervening years. The acknowledgement that PVS is not a ‘black and white condition’ surely implies that consciousness - normally interpreted as an all-or-nothing condition[cciii] - could not logically be the defining criterion of PVS. If PVS lies on a continuum with such as ‘locked-in syndrome’ - a condition where consciousness is not in doubt - then surely this entails acceptance of the proposition that not all PVS patients lack consciousness?

Section 4: Borthwick’s criticism of the definition of PVS

Borthwick’s criticism is based on the absence of clear criteria for differentiating between PVS and the Locked-In Syndrome, and on the confusions that flow from this. He argues that, in the absence of such criteria, the assertion that PVS patients lack consciousness and the ability to experience pain, whilst simultaneously accepting that Locked-In Syndrome patients have these abilities, is not defensible. Attempts to bolster these assertions have resulted in the, supposed, lack of consciousness of PVS patients and the permanence of PVS, being incorporated into the definition of PVS. Borthwick sees the requirements of medical convenience and the need to husband scarce resources, as the motivating forces for such developments; medical ethicists - in their search for simple solutions to limiting situations - have colluded in this situation.

Distinguishing PVS and the Locked-In Syndrome

The criterion often used to differentiate the Locked-In Syndrome from other similar conditions, is the ability of a Locked-In Syndrome patient to signal by using eye movements. Borthwick considers the case of a patient who, in addition to suffering from the Locked-In Syndrome, also suffers from a medical condition which affects their eye control. He puts the question as to how such a patient would be distinguished from one suffering from PVS. Borthwick argues that the theoretical inability to distinguish between a Locked-In Syndrome patient suffering from loss of eye-muscle control - whose consciousness is not in doubt - and a PVS patient - who, it is asserted, has no consciousness, shows the groundlessness of the assertion that PVS patients have no consciousness. Borthwick also argues that because, at the margin between ‘locked-in syndrome’ and PVS, the behavioural characteristics that denote consciousness are minute, and easily overlooked, the danger of patients being diagnosed as PVS - when in fact they are not - is particularly acute. This point is well vindicated by the Andrews (1996) study considered earlier in Section 3.

Borthwick also questions why there has been no medical study to seek to determine whether recovered PVS patients did in fact experience pain.[cciv] As mentioned earlier,[ccv] the BMA Guidelines actually preclude this asking of this question.[ccvi]

The ‘permanence’ of PVS

Borthwick pints out that Jennett and Plum, in their original paper wished to identify an ‘irrecoverable state’. He suggests that the Multi-Society Task Force on PVS, in essence, manipulated the recovery figures to support their contention that, after 12 months in a PVS, recovery was only possible in an insignificant number of cases. He argues that this is a self-validating exercise:

“... and if, of course, patients with PVS are encouraged to die when ethicists believe that their condition is morally certain then we can at least be sure that the number of disconfirming recoveries will drop to negligible proportions and the statistics will fall into line with the theories.“ [ccvii]

Borthwick’s criticism of the use of the term ‘permanence’ by the Task Force does not adequately reflect their proposals in that (unlike the ‘President’s Commission’ or indeed to the BMA Guidelines) they clearly distinguished between ‘persistent’ - as diagnosis - and ‘permanent’ - as prognosis. However, Borthwick’s final conclusion:

“To say, as the consensus statement [ccviii] says: ‘By definition, patients in a persistent vegetative state are unaware of themselves or their environment.’ is to raise evasion to the level of a diagnosis and denial to the status of a philosophy.” [ccix]

This is a serious and sobering criticism of the approach adopted by the Task Force.

The role of the medical ethicists.

Borthwick believes that almost all medical ethicists who discuss post-coma survival, have been guilty of ‘pernicious oversimplification of the medical background to their ideas’ [ccx] and that this emerges clearly from any close reading of their work on this topic. He suggests that, in ethical discussion of these issues, it is usually taken as axiomatic that PVS patients have no consciousness;[ccxi] Ronald Dworkin, for example, states:

“Some accidents and diseases leave their victims in comas or in what doctors call a persistent vegetative state. In either case they are unconscious - though many patients in a persistent vegetative state have open moving eyes - and the higher centres of their brains have been permanently damaged in a way that rules out any return to consciousness. They are capable of no sensations and no thoughts.” [ccxii]

Borthwick suggests that the discipline of medical ethics tends to describe conditions:

“ ... in the manner that produces the clearest ethical conclusions, rather that in a manner that takes account of the inevitable ambiguities of uncertain knowledge.” [ccxiii]

He argues that the medical ethicists’ inability to cope with the uncertainties inherent in real situations distorts the ethical debate and can result in inappropriate and indeed unethical consequences being advocated in particular cases. The most disquieting example given by Borthwick, of such intervention is in relation to Carrie Coons;[ccxiv] in this case the ethicist Bonnie Steinbock suggested that the (then recovered) Carrie Coons’ expressed wish to continue living was not rational and need not be heeded:

“Her capacity for assessing evidence has been affected by her own bizarre experience ... Courts should resist the temptation to oversimplify this job by treating a patient’s utterances during brief periods of consciousness as determinative.” [ccxv]

Conclusions

Borthwick has been one of the very few academics [ccxvi] to challenge the philosophical presumptions underpinning PVS. His criticism of the assertion that PVS patients lack consciousness and cannot experience pain, are trenchant; they appear not to have been acknowledged in the literature, much less answered. His observations - like that of the child who pointed out the king really had no clothes! - are refreshingly direct and much needed in that they bring into the open, questions which have for too long been denied.

His criticism of the role of medical ethics is also apposite. If ethical theory - in distorting the complexities of life so that they fit into convenient ethical categories - validates inappropriate consequences, then surely such an intervention is, in itself, profoundly unethical. In short the primary obligation of any ethicist is to be as fully open as is possible to the complexities of an actual situation - to ‘let the situation itself speak’.[ccxvii] To approach a situation with a too-ready conceptual structure, guarantees that only those facts that are considered to pertain to the structure will be seen. In stating:

“If the discipline of medical ethics cannot cope with uncertainty then it is useless in the real world.” [ccxviii]

Borthwick has succeeded in putting the management of doubt in the making of ethical judgements centre stage. This issue is addressed in Chapter 6 of this thesis.

Borthwick also offered deeper reasons - other than simply the convenience of medical practitioners and ethicists - for the confused state of the ethical debate on PVS. Firstly, he suggests that ‘denial’ plays a considerable role in this debate; whether denial of death, or of situations which we find, personally, too traumatic to contemplate. To substantiate this he quotes the response of a medical witness in the Quinlan case to being questioned on whether Karen Quinlan might be conscious:

“There is such a situation that can occur, and its theoretically possible, in terms of animal experiments. We’ve seen such patients with such things. There may be, who knows, meditation, but I don’t know how you’re going to find out. I think it’s one of the most horrendous things you can imagine.” [ccxix]

Borthwick concludes:

“We wish to believe that people in unendurable situations are unaware, and we resist evidence that would indicate otherwise. Some of us avert our eyes. Others elevate our disquiet to the status of a neurological theory and an ethical imperative.” [ccxx]

Secondly, he asks the rhetorical question:

“Why are the qualities of absence of consciousness, clear differentiation [ccxxi] and established irrecoverability so important that normal canons of reason must be stretched to accommodate them?” [ccxxii]

In answering this question he suggests that ethicists have had a need to isolate limiting cases and in particular a class of subjects who could be separated from the general run of humans. Anencephalic humans have been one such group and PVS patients another.[ccxxiii]

These two reasons - the denial of death and limiting cases of humanhood - are considered in later chapters of this thesis from a broader perspective than Borthwick’s;[ccxxiv] and a more appropriate solution to the ethical problems associated with PVS arises out of a consideration of these concepts. Part 3 of this thesis sets out this alternative conceptual structure.

If a point of criticism might be made of Borthwick’s analysis it is that it does not offer any way out of the impasse; nor does it seek to transcend the conceptual structure within which the problems are normally placed - it does not utilise the concept of ‘personhood’ nor attempt to sever the link between ‘personhood’ and ‘consciousness’. It does not address the difficulty of finding less problematic definitions of PVS nor of attempting to incorporate the existence of uncertainties and doubts - and these are an inevitable component of all medical judgements - into a theory of ethical decision making. It is to these issues that we next turn.

Section 5: A proposal for an alternative definition of PVS

Cases of misdiagnosis of PVS are also cases of misdiagnosis - or, rather, non-diagnosis - of some other condition. Two questions arise:

(i) What are these other conditions? and

(ii) What diagnostic criterion of PVS was incorrectly perceived by the diagnosing physician as being present, and what diagnostic criterion of the correct condition was missed?

These questions have been ignored in the rush to insist that cases of patients, who had been diagnosed as being PVS but who had subsequently manifested awareness, were cases of misdiagnosis rather than recovery. For example, the Grubb studies - which were laudably insistent on the need, in discussing PVS, to use appropriate terminology - made their own contribution to misleading terminology, when[ccxxv] they stated that :

“... a recently published report of cases in one hospital in the United Kingdom suggests that many patients who are regarded as being vegetative have in fact been misdiagnosed. Some patients diagnosed as being vegetative state were in fact in a locked in syndrome.” [ccxxvi]

The phrase ‘locked-in syndrome’ does not appear in the Andrews article. It may well be that some patients should have been diagnosed as having ‘locked-in syndrome’ but then the diagnostic criteria for ‘locked-in syndrome’ should be explicitly stated, and it should be shown that these patients did, at the time of diagnosis, fit these criteria. To attempt to resolve the problem of misdiagnosis of PVS by stating that misdiagnosed PVS patients were in fact suffering from ‘locked-in syndrome’, without showing that at the time of the original diagnosis, the criteria for ‘locked-in syndrome’ were satisfied, is to replace the problem of misdiagnosis of PVS with the problem of misdiagnosis of ‘locked-in syndrome’; in reality there is only an illusion of progress no different than when a problem is ‘swept under the carpet’.

The only possibility of restoring clarity to the debate is to return to first principles - to the definition of PVS; for if the definition is uncertain, then all subsequent discussion is based on shifting sands. Only through clarity of definition can subsidiary questions, such as the distinction between misdiagnosis and recovery, be resolved.

The goal of this section is to establish an alternative definition of PVS based on enduring inability to communicate. This definition resolves many of the problems currently associated with the diagnosis (and the misdiagnosis) of PVS. The section is structured into four subsections:

Subsection1: Compares the criteria that have been used, either implicitly or explicitly, to define PVS.

Subsection2: Examines the medical conditions which are similar to PVS. The main problem in relation to the diagnosis of PVS is not its diagnosis as such, but its differential diagnosis - that is, how it is to be distinguished from a small number of medical conditions with which it may be confused. The ‘Locked-In Syndrome’ is found to be the condition whose differentiation from PVS presents the greatest difficulties. Thus, the problem is to define both of these conditions in a manner that best facilitates their being distinguished from each other.

Subsection3: Examines the theoretical requirements that the definitions of PVS and Locked-In Syndrome should satisfy in order to best facilitate a differential diagnosis.

Subsection4: Proposes definitions of both PVS and the Locked-In Syndrome. The definition of PVS which is proposed is PVS_COM as discussed in Section 1.

Subsection 1. The various criteria used to define PVS

Much of the controversy that has surrounded PVS relates to lack of certainty in its diagnosis; ‘misdiagnosis ‘ is nothing but the other face of this particular problem. This lack of certainty can be examined from two interrelated perspectives, firstly from that of theory/practice and secondly from that of ‘absolute diagnosis’/‘differential diagnosis’.

The perspective of theory/practice

The need for theoretical clarity in drawing the distinction between PVS and other conditions is patent, for unless this is done any attempts at drawing clinical distinctions - and resolving the problem of misdiagnosis - are bound to fail.

The perspective of ‘absolute’/’differential’ diagnosis

The problem of seeking a definition of PVS can be tackled either by seeking a set of necessary and sufficient criteria for the diagnosis - such could be described as leading to an ‘absolute’ diagnosis - or by seeking a criterion, or set of criteria which would permit the condition to be differentiated from other conditions - a ‘differential’ diagnosis.

In its broad outlines PVS does not present any problems in definition - the image of the open eyed, but apparently unresponsive, patient is stark. The difficulties that occur relate to its differential diagnosis - i.e. to distinguishing PVS from a small group of other conditions with which it may be confused. It is clear then that what is required is a criterion which will not only theoretically permit a differential diagnosis of PVS, but which is of value in a clinical setting, which is after all where the differential diagnosis must be made.

The various criteria that have been used, either explicitly or implicitly, in the definition of PVS have been described in earlier sections of this chapter. The relationships between these various criteria are represented in the following diagram, from which it can be seen that these criteria are not equivalent, for example, the group of patients who are conscious is not identical to the group which manifest conscious behaviour. Since these criteria are not equivalent it is important that one be clearly chosen as a ‘definitional criterion’; the relationship of the other criteria to this definitional criterion being then a matter of experimental verification and not of definition.

Most attempts at definitions have used ‘awareness as judged behaviourally’ as the main diagnostic criterion. Unfortunately most have sought to subsequently incorporate further criteria - such as lack of consciousness or permanence, which are not logically equivalent to the main definitional criterion - into the definition. Others, such as Andrews and The Multi- Society Task Force, implicitly use ‘lack of consciousness’ as the primary criterion.

Criterion:	Advocated by:	‘LS-PVS’ *
never recover ‘actual’ consciousness		will recover consciousness						Never recover consciousness
never manifest ‘conscious’ behaviour	BMA (implicitly)	will manifest ‘conscious’ behaviour					Never manifest ‘conscious’ behaviour
never recover ability to communicate		will communicate				Never communicate
now - no ‘actual’ consciousness	Andrews (implicitly)	conscious at present			No present consciousness
now - no ‘conscious’ behaviour manifested	Jennett and Plum definition	manifesting ‘conscious’ behaviour at present		No present manifested ‘conscious’ behaviour
now - no ability to communicate	Proposed usage	able to communicate at present	No present ability to communicate

Table 4-5: The relationship between the differing criteria used in the definition of PVS

*N.B.::- It is convenient to have a term to refer to that group of patients who are - on a preliminary examination but before a differential diagnosis is made - considered to be either ‘PVS’ or ‘Locked-In Syndrome’; the acronym ‘LS-PVS’ is the term used to refer to this group. These are patients who are open-eyed but apparently unresponsive and who display primitive postural movements. The right hand part of the table indicates how this undifferentiated group are partitioned by the differing criteria such as manifestation of ‘conscious’ behaviour or ability to communicate etc.; the unshaded portion refers to those who do not possess the criterion, the shaded portion to those who do:

	‘LS-PVS’
criterion	do not possess criterion	possess criterion

The purpose of the table is to show graphically how the partitions occasioned by these different criteria relate and that they are not equivalent.

Subsection 2. The competing medical conditions[ccxxvii]

The Multi-Society Task Force on PVS[ccxxviii] describe the conditions of severe neurological disability which are similar to PVS. With the exception of the ‘Locked-In Syndrome’ and ‘Akinetic Mutism’ -which will be considered separately - these are listed in the Table 4-6 along with the criterion which enables them to be differentiated from PVS or Locked-In Syndrome:

Condition	Differential criterion
Coma	The eyes remain closed.
Brain death	Either ‘permanent absence of all brain functions, including those of the brain stem’, or ‘complete absence of cortical activity’.
Dementia	Progressive loss of cognitive functions in which arousal mechanisms are usually normal. Some awareness is present.
Apallic syndrome	Jennett and Plum had distinguished this term from PVS but the Task Force recommended the discontinuance of its use. The President’s Commission considered it to be equivalent to PVS.[ccxxix]
Akinetic mutism	Discussed separately below
Locked-In Syndrome	Discussed separately below

Table 4-6: The conditions with which PVS may be confused.

Despite the surveys by Tresch (who found widespread confusion between the terms ‘PVS’ and ‘coma’) and Childs (who found some confusion between the terms ‘PVS’ and ‘dementia’) considered earlier,[ccxxx] it appears that the ‘differential’ diagnosis of these conditions from PVS does not present any theoretical difficulties.

The condition of ‘Akinetic Mutism’ - which Schmutzhard[ccxxxi] believes ‘needs clear differentiation from vegetative states’[ccxxxii] - is more problematic. Both Jennett and Plum and the Multi Society Task Force, suggest some speech is present in this condition; this would obviously provide a criterion sufficient to theoretically differentiate it from PVS. Schmutzhard considers the existence of definite periods of eye fixation (usually lasting several minutes) as the criterion which allows differentiation from the vegetative state.[ccxxxiii] The various criteria are set out in the Table 4-7:

Akinetic Mutism	Differential criteria
Jennett and Plum	The term ‘Akinetic Mutism’ presents ‘considerable semantic problems’ and ‘the akinesia and the mutism do not always go together’. Furthermore it seems that the mutism may only be relative “[his] patient would answer in whispered monosyllables, whilst other reported patients would use sign language to communicate.” [ccxxxiv]
The Multi-Society Task Force on PVS	Pathologically slowed, or nearly absent, bodily movement and loss of speech.
Schmutzhard	Shows periods of definite fixation of eye movements; no mention is made of occasional speech.

Table 4-7: Criteria to enable ‘Akinetic Mutism’ to be distinguished from PVS.

This leaves Locked-In Syndrome as the remaining condition from which PVS needs to be distinguished. As stated earlier [ccxxxv] a term is required to enable both these conditions to be discussed together as one i.e. in their undifferentiated state; the joint acronyms ‘LS-PVS’ suffices for this.

Our problem can now be rephrased as to find a criterion which is operative in the ‘LS-PVS’ field and will enable it to be partitioned into two mutually exclusive categories, one of which is PVS, and the other is the Locked-In Syndrome. The general conditions required for such a criterion will be considered after we have examined various definitions of the ‘locked-in syndrome’; these are summarised in the following table:

Locked-in syndrome	Differential criteria
Jennett and Plum	“Such patients entirely awake, responsive and sentient, although the repertoire of response is limited to blinking, and jaw and eye movements.” [ccxxxvi]
The Multi-Society Task Force on PVS	‘consciousness and cognition retained but movement and communication impossible’ but ‘can usually establish limited communication through eye movement signals’.[ccxxxvii]
Schmutzhard	Complete paralysis of all voluntary muscles except for vertical eye movements. “A patient with locked-in syndrome is able to communicate by blinking code in purposeful and intelligent ways.”[ccxxxviii]

Table 4-8: ‘Locked-in syndrome’ as defined by various authorities

The voluntary use of the eye muscles - leading to the ability to communicate - is noted by both Jennett and Plum and by Schmutzhard. The Task Force, however, does not see these eye movements as being necessary (they speak of ‘usually’). The reason for this is, perhaps, that since they conceded that certain patients could in fact be conscious without these patients manifesting any ‘conscious’ behaviour (the ‘frozen-aware’ spoken of earlier), and since they wish to assert that all PVS patients are unaware, their redefinition of the Locked-In Syndrome becomes logically necessary. The practical consequence of this should be that a clinician, faced with a patient in the condition tentatively identified as ‘LS-PVS’ [ccxxxix], who consistently manifested no ‘conscious’ behaviour, should not diagnose the patient as PVS but should suspend judgement, leaving open the possibility of either a PVS or a Locked-In Syndrome diagnosis. This conclusion is necessary since the Task Force offers no other definitive criteria to distinguish between PVS and the Locked-In Syndrome patients. However, the whole tenor of their report is to suggest that such a patient should be diagnosed as PVS. It seems that in the interests of stating that all PVS patients are unaware the intellectual clarity of the Jennett and Plum definition was sacrificed - exemplifying the intellectual dishonesty spoken of earlier by Borthwick in his final conclusion.[ccxl] Furthermore, the Task Force’s ‘redefinition’ of the Locked-In Syndrome was not done explicitly; nor were any reasons advanced as to why such a redefinition was necessary. For these reasons and because Plum was one of those to first describe the syndrome as such[ccxli] and, more importantly, for reasons of intellectual clarity, the definitions of the Locked-In Syndrome proposed by Jennett and Plum, and by Schmutzhard, is - with a proviso - being adopted here in contrast to that implicitly suggested by the Multi Society Task Force Report.

A proviso is necessary because there are patients who are open-eyed, apparently unresponsive and who display primitive postural movements, but who it is found subsequently can communicate by some primitive bodily movement other than eye movement. For example, patient B of the Andrews (1996) study was such that:

“Only when he was satisfactorily seated was it identified that he had a slight shoulder shrug which could be used for communication purposes.” [ccxlii]

Patient B is not PVS, he is not Locked-In Syndrome (as traditionally defined) and yet he clearly belongs to that same continuum. One possibility is to introduce a new term for such patients who can communicate in a primitive manner by use of other than eye movements, the alternative is to widen the term Locked-In Syndrome. However because no ethical or legal distinction can be drawn between such patients and those traditionally described as Locked-In Syndrome - though there may be valid clinical reasons for a distinction - the term will be used in this wider sense:

Conclusion _{4 -16} : The Locked-In Syndrome is distinguishable from PVS in that a patient with locked-in syndrome is able to communicate by using the blinking of an eye, or some equally primitive bodily movement.

Subsection 3. The theoretical requirements on definitions to best enable differential diagnosis

In the context of a patient being diagnosed as ‘LS-PVS’ - i.e. either PVS or Locked-In Syndrome - it is clear that criteria for differentiating between ‘locked-in syndrome’ and PVS must themselves satisfy a number of conditions:

(i) The criteria must be such that PVS and the Locked-In Syndrome are mutually exclusive diagnoses. The situation exemplified in Example 1 (Table 4-9) cannot be allowed to occur.

(ii) The criteria must be such that PVS and the Locked-In Syndrome are exhaustive of the field of definition - i.e. ‘LS-PVS’ - and not as is represented in Example 2 (Table 4-9). Jennett and Plum, in so far as they defined the ‘locked-in syndrome’ in terms of ability to communicate and PVS in terms of the absence of ‘conscious’ behaviour, did not obey this condition. A patient who was unable to communicate but who showed some purposive behaviour - such as ‘Case 2’ in the Andrews (1993b) study - fits neither category.

To ensure the complementarity desired, the criteria must succeed in partitioning the field of definition in a manner such as is represented in Example 3 (Table 4-9). One direct and simple method of achieving this is to forsake attempts at independent definitions of PVS and the Locked-In Syndrome and to use, as the defining criterion for PVS, the negative of a criterion used to define the Locked-In Syndrome, - i.e. if the Locked-In Syndrome is (within LS-PVS) defined by criterion ‘X’, then PVS is defined by the criterion ‘not-X’.

		The field of definition: ‘LS-PVS’
Example 1	criteria exhaustive but not mutually exclusive	PVS
			Locked-in syndrome
Example 2	criteria not exhaustive but mutually exclusive	PVS
			Locked-in syndrome
Example 3	complementary criteria	PVS
	i.e. both exhaustive and mutually exclusive		Locked-in syndrome

Table 4-9: General conditions to which a definition must conform to enable it to provide a differential diagnosis between two competing diagnoses

Subsection 4. Proposed definition of PVS

The Locked-In Syndrome has been defined in terms of the ability to communicate. Therefore, if - in the context of ‘LS-PVS’ - PVS is defined as inability to communicate the conditions just specified are satisfied. This is, in fact, the definition PVS_COM, considered earlier in Section 1 in discussing the Jennett and Plum 1972 paper.

Conclusion _{4 -17} : The persistent vegetative state is characterised by seeming wakefulness in the absence of an ability to communicate.

The meaning of the term ‘communicate’ requires some clarification so that objections, such as those of Cranford - who had ‘viewed the buzzer system with some scepticism’ [ccxliii] - can be countered. This is undertaken in Chapter 10 where the level of communication required is also discussed. It will be argued in Chapter 10, that a necessary condition for the ascription of personhood is that communication is possible to some minimal level. A level that naturally suggests itself is one which would permit the patient to express their views on the continuance, or withdrawal, of treatment.

The advantages of these definitions over their alternatives are considered in Section 6.

Section 6: Conclusions

Three topics, it is clear, are of pivotal importance to any discussion of PVS:

(i) The misdiagnosis of PVS.

(ii) The definition of PVS, and its distinction from Locked-In Syndrome.

(iii) The possible reasons for, what appears to be, a systematic manipulation of the normal canons of rational discourse in favour of a particular conclusion - i.e. that PVS patients have no awareness, can feel no pain and - if in the PVS state for more than 12 months - cannot recover.

This last suggestion may seem extreme, yet the dissimulation - in, for example, the BMA guidelines and the Institute of Medical Ethics Working Party Report[ccxliv] - is such that some explanation is required.

Misdiagnosis

One of the conclusions[ccxlv] of Section 3 was that the best estimate for the rate of misdiagnosis of PVS is of the order of 50%; diagnosis of PVS is essentially a random process. Such a rate of misdiagnosis is bizarre and loudly bespeaks the need for a theoretical reevaluation of PVS. Furthermore, that such a high level of misdiagnosis is not considered relevant[ccxlvi] to ethical commentary of PVS is equally bizarre, and it also requires explanation.

The first step to a reevaluation of PVS is at the level of its definition. New definitions of PVS and Locked-In Syndrome have already been outlined (they are discussed in the next subsection); these definitions help to establish a rigorous foundation for a discussion of PVS and related issues.

The existence of doubt, or uncertainly, is a fundamental feature of most situations in life, especially in those which give rise to ethical controversy. Ethical commentaries which, driven by a need for theoretical harmony, deny this doubt and oversimplify the existing situation can result in profoundly inappropriate ‘solutions’ being advocated.[ccxlvii] In Chapter 5, a schema is suggested to permit the existence of doubt to be incorporated into ethical decision making; this permits the level of misdiagnosis to find expression in ethical discussions concerning PVS patients.

Advantages of the proposed definitions of PVS and Locked-In Syndrome

The differential definitions being proposed for the Locked-In Syndrome is:

‘The Locked-In Syndrome is distinguishable from PVS in that a patient with locked-in syndrome is able to communicate by using the blinking of an eye, or some equally primitive bodily movement.’ [ccxlviii]

That for PVS is:

‘The persistent vegetative state is characterised by seeming wakefulness in the absence of an ability to communicate.’ [ccxlix]

The advantages of these proposed definitions are that:

(i) a clear, practical, intellectually rigorous distinction between PVS and the Locked-In Syndrome becomes possible. This distinction is based securely on the 1972 paper by Jennett and Plum which originally described PVS as such.[ccl]

(ii) Because the definition of PVS is based on ‘inability to communicate’, the problematic concept of ‘near-PVS’ is not required.

(iii) The problem of distinguishing between cases of misdiagnosis and cases of recovery is, to a considerable extent, ‘dissolved’:-

a PVS patient was ‘misdiagnosed’ if, at a particular time, he was able to communicate but this was not recognised; the correct diagnosis would have been Locked-In Syndrome.[ccli] If, however, at the time he was diagnosed as PVS, he was not able to communicate, but subsequently became able, then his case is one of recovery and not misdiagnosis even though he may have been conscious at the time of the original diagnosis.

The adoption of such definitions would bring a terminological clarity to the discussion of misdiagnosis in studies such as Andrews(1996).

(iv) The chimera of determining patient ‘awareness’ disappears; the definition makes no assumptions about the consciousness of PVS patients nor their ability to experience pain. It would permit the analgesic treatments of PVS patients without, thereby, resulting in theoretical inconsistency.

(v) From the studies on misdiagnosis, it is clear that some PVS patients have some level of consciousness and can experience pain, and that there is no method for determining which PVS patients these are. In Chapter 5 it is argued that the correct ethical decision is to treat all PVS patients as if [cclii] they are conscious and can experience pain.

(vi) The definition of PVS, in so far as it coincides with a necessary condition for the ascription of personhood - i.e. the ability to communicate to some minimal standard, permits an elegant and intellectually satisfying method of resolving the ethical problems associated with end of life decisions in relation to PVS patients without the danger of introducing a ‘slippery slope’ - these issues are pursued in Part 3.

(vii) The definition of PVS in terms of communication, restores an important role to the family and carers of PVS patients, in determining the absence of communication.[ccliii] This permits end-of-life issues concerning PVS patients to be resolved in a much more appropriate fashion than at present. The opportunities for disagreement between family and medical staff would be considerably lessened[ccliv] if the criterion being considered was ‘communication’ rather than ‘awareness’. The treatment of the patient as if they were conscious might also be therapeutic for the patients’ family and permit a less distressing ‘leave taking’ - these issues are pursued in Chapter 9 where the concept of ‘a good death’ is examined.

(viii) The definition in terms of communication, rather than behaviour, implies an ongoing obligation on the medical staff to attempt to establish communication. The requirement is not a passive one - as is observing behaviour - but an active one which would necessitate creative, multidisciplinary endeavours to stimulate and observe the patient; as such it would be in accord with ‘current best practice’ as exemplified by such as Andrews (1996).

Andrews spoke of the need for developing stimulation programmes to help evince awareness in PVS patients;[cclv] and, in this, he saw a role for the patient’s family. Such attempts at stimulation can be interpreted as attempts at communication and the obligation to attempt such stimulation programmes would flow naturally from a definition of PVS framed in terms of communication. In the event of such stimulation programmes not eliciting a response - i.e. communication not being established - a diagnosis of PVS_COM would follow. A second proposal of this thesis is that ‘personhood’ is lost if the inability to communicate is judged to be permanent. I suggest that such a definition would usually be in accord with the families’ meaning of this term, particularly if they had been closely involved in the attempts to establish communication. A judgement that personhood was lost would permit either treatment withdrawal or other alternatives to be considered; these issues are considered in detail in Part 3.

(ix) The question of ‘permanency’ - i.e. in ‘permanent’ inability to communicate - would resolve itself in a natural fashion dependent on the particular patient and their responses. [cclvi] Judgements of ‘permanence’ would flow - not from arbitrary time scales as at present - but naturally from the intensity of the effort used in attempting to establish communication, and the actual patient response, if any.

The patient, known as Case 2[cclvii] in the Andrews (1993b study), who recovered awareness, but not the ability to communicate, is of particular interest in that it appears to present an obstacle to the definitions of PVS and ‘personhood’ which this thesis advocates. Andrews’ definition of awareness, however, involved two distinct levels of awareness, firstly, the ability to eye track - that is to follow moving objects with one’s eyes[cclviii] and secondly, the ability to respond to a command such as to blink, or to squeeze a hand. Case 2 did track moving objects but did not respond to commands but ‘he laughed appropriately at cartoons and showed pleasure when his wife visited and distress when she left.’ [cclix] The apparent difficulty is resolved if it is seen that the suggested definition of PVS - PVS_COM - is based on an inability to communicate but ‘loss of personhood’ is defined as occurring only when this inability is judged to be permanent. Case 2 would, on these definitions, be considered as in a PVS but as not having lost personhood.[cclx] Case 2 is simply a case in transition about whom no judgement as to permanency can be made either way; this is born out by Andrews’ observation that ‘at five years after brain damage he [i.e. Case 2] was still developing new responses.’ [cclxi] and that, generally, the ability to respond to commands occurred some time after the ability to eye-track.[cclxii]

I wish to draw a final conclusion from this discussion:

Conclusion _{4 -18} : Definitions of PVS and Locked-In Syndrome framed in terms of ability to communicate, provide a more fitting resolution of the problems associated with PVS than do alternative definitions.

Possible reasons for the unsatisfactory nature of current debates on PVS ?

I suggest that the reasons for the unsatisfactory nature of the current debate on PVS are twofold. Firstly, the debate is ‘conclusion lead’ and secondly, the concept of ‘consciousness’ is forced to play an inappropriate role in the discussion.

A ‘conclusion lead’ debate?

By using this phrase ‘conclusion lead’ I mean to suggest that many commentators - ethical, medical and legal - believe that the correct resolution of problems associated with PVS, and PVS-like, patients is to ‘allow’ them to die. They may believe this from the most altruistic of motives - such as concern for the patient’s and their families welfare, or from less exalted motives - such as a concern over the utilisation of scarce resources, or simply out of personal denial - in that they find the situation of a PVS-like patient too horrendous to contemplate.[cclxiii] This resolution may indeed be the most fitting resolution for these problems, however, the desired conclusion must not be allowed to dictate the debate. The concepts, definitions and terminology must not be structured, or distorted, to facilitate the reaching of a desired conclusion. The efforts of, for example, the Institute of Medical Ethics, to suggest (in speaking of the hope of the families of PVS patients for the patients recovery) that it is ‘unfair and unkind to allow such optimism to be sustained; ’[cclxiv] without mentioning that the diagnosis has a 50% chance of being wrong, bespeaks a paternalism which is at best outdated. It is, in effect, an abrogation of the rights of both the patient and their family; as such, it is a denial of the ‘personhood’, not only of the patient, but also of each member of their family.[cclxv] The insistence by the BMA Guidelines that cases of recovery from PVS are after 12 months, logically impossible is equally blameworthy. Lest this appear as an overstatement consider the following:

Scenario: The parent of a patient ‘John’, who had been diagnosed as PVS for over 12 months, is discussing the possibility of recovery with the patients consultant.
Parent	What is John suffering from?
Consultant	He is in a persistent vegetative state.
Parent:	Has John any awareness of his condition?
Consultant	Awareness is completely impossible in a PVS.
Parent:	And he cannot feel pain?
Consultant	Of course not.
Parent:	Is there any chance that he might recover?
Consultant	I can categorically state, with the full backing of the British Medical Association, that recovery from such a condition is completely, that is 100%, impossible.
Parent:	Should I then agree to his treatment being withdrawn? .. . ..

Each answer by the consultant is in accord with the BMA Guidelines; his replies would merit the glowing approval of the Institute of Medical Ethics, but is such dissimulation ethical? Could a ‘consent’ achieved by such means be considered an informed consent? Surely not!

An inappropriate role for ‘consciousness’?

The problems associated with the definition, diagnosis and misdiagnosis of PVS can be traced in large measure to the assertion that PVS patient have no consciousness. This assertion and the necessity to defend it have bedevilled the discussions on PVS. However, as is evident from the force with which these assertions are made, it is not consciousness as such that is in issue - after all to treat PVS patients ‘as if’ they are conscious is not demanding of resources, either material or human - it is consciousness as symbol.

Consciousness - regarded as symbol - is as an icon for Cartesian ‘personhood’ and the Christian ‘soul’; the supposed lack of consciousness thus becoming the token which justifies treatment withdrawal.[cclxvi] This suggests that the relevant concept is not ‘consciousness’ but ‘personhood’ and that, in relation to PVS patients, the attempts to determine the existence, or otherwise, of consciousness have been a ‘cul-de-sac’.

The approach being suggested in this thesis is that, when considering necessary conditions for personhood,[cclxvii] it is not ‘consciousness’ but rather ‘the ability to communicate to some minimal extent’ which is the appropriate necessary criterion. If PVS is defined in terms of ‘inability to communicate’ then the determination that such is permanent is in fact a determination of loss of personhood. If, at this stage, questions of the scarcity of resources are relevant to such an extent that a choice must be made between two patients one of whom has lost their personhood, then the appropriate choice is naturally dictated by the very meaning of the concept of ‘personhood. These ideas are analysed more fully in Part 3.

____________

The conclusions that were established in this Chapter are:

Conclusion _{4 -1} : The definition of PVS and the distinction between it and Locked-In Syndrome given by Jennett and Plum is capable of being formulated either in a ‘mentalist’ (PVS_MTL) or behaviourist (PVS_BEH) terminology or in terms of an inability to communicate (PVS_COM). The mentalist formulation is peripheral.

Conclusion _{4 -2} : The Jennett and Plum discussion of PVS is unsatisfactory in that in attempting to identify an irrecoverable condition, it ignores the position of those who recover from a condition which at the time of diagnosis was indistinguishable from PVS.

Conclusion _{4 -3} : According to Jennett and Plum, the diseases of responsiveness that might be confused with PVS are ‘Akinetic Mutism’, ‘Locked-In Syndrome’ and ‘Apallic Syndrome’. ‘Akinetic Mutism’ is better described as a disease of limited responsiveness rather than unresponsiveness; ‘inability to communicate’ is either not present or, if present, is not believed to be permanent. In ‘Locked-In Syndrome’ communication is possible though by a primitive means. ‘Apallic Syndrome’ is a condition which, in so far as is differs from PVS, is characterised by the inability to communicate not being permanent.

Conclusion _{4 -4} : If, within a context where a patient exhibits only primitive postural movements, PVS is defined in terms of an inability to communicate believed to be permanent (i.e. PVS_COM), then it can be readily distinguished from Locked-In Syndrome and the other conditions of unresponsiveness outlined by Jennett and Plum. Furthermore such a definition allows ‘near-PVS’ and ‘PVS’ to be assimilated into the one condition.

Conclusion _{4 -5} : A further reason for rejecting the assertion that consciousness is necessarily absent in PVS patients, is to be found in the fact that PVS is a syndrome rather than a unitary, theoretically coherent, medical condition; and that it lies on a continuum of conditions at one end of which is the Locked-In Syndrome.

Conclusion _{4 -6} : The President’s Commission for the study of ethical problems in Medicine chose a definition of PVS and a terminology for its discussion which effectively precluded the consciousness of PVS patients or their possibility of recovery being questioned.

Conclusion _{4 -7} : The Multi-Society Task Force on PVS acknowledge the possibility that patients who appear to be in a persistent vegetative state might retain awareness but show no behavioural manifestation of this. The Task Force asserts, without giving theoretical ground for such an estimate, that such cases are ‘rare’.

Conclusion _{4 -8} : The Multi-Society Task Force acknowledge the existence of patients who are aware but show no behavioural manifestations of awareness [the ‘frozen aware’]. In categorising these patients as cases of Locked-In Syndrome, rather than PVS, the coherence of the criteria used to diagnose Locked-In Syndrome is damaged.

Conclusion _{4 -9} : The use by the Institute of Medical Ethics of the term ‘permanent’ in relation to PVS whist omitting any reference the possibility of recovery, or to the high level of misdiagnosis associated with that condition, is disingenuous.

Conclusion _{4 -10} The suggestion by the BMA Guidelines that patients who recovered, having been previously diagnosed as PVS, were to be classified as cases of misdiagnosis is destructive of honest debate. Furthermore, in that such patients are implicitly reclassified as being Locked-In Syndrome patients, the coherence of the definition of the Locked-In Syndrome is threatened.

Conclusion _{4 -11} The rates of misdiagnosis determined by various studies should not be interpreted as indicative of the true rate of misdiagnosis but rather as indicating absolute minimum rates.

Conclusion _{4 -12} : The best estimate for the rate of misdiagnosis of PVS is of the order of 50%. This implies that the diagnosis of PVS is essentially a random process.

Conclusion _{4 -13} : The reasons suggested by the studies on misdiagnosis of PVS for its occurrence are inappropriate terminology, imprecise definition of PVS and overly primitive procedures for determining awareness.

Conclusion _{4 -14} : The Andrews 1996 study on misdiagnosis used ‘ability to communicate’ as a surrogate for ‘possession of awareness’.

Conclusion _{4 -15} : It is imperative that the ethical content of the term ‘recovery’ be recognised and made explicit, and that it not be considered to be a term amenable to a purely technical solution.

Conclusion _{4 -16} : The Locked-In Syndrome is distinguishable from PVS in that a patient with locked-in syndrome is able to communicate by using the blinking of an eye, or some equally primitive bodily movement.

Conclusion _{4 -17} : The persistent vegetative state is characterised by seeming wakefulness in the absence of an ability to communicate.

Conclusion _{4 -18} : Definitions of PVS and Locked-In Syndrome framed in terms of ability to communicate, provide a more fitting resolution of the problems associated with PVS than do alternative definitions.

---

[i] see: Conclusion _{1 - 4} There is no neurological test which will determine PVS patient consciousness.

Conclusion _{1 - 6} There are theoretical limits to the determination of necessary and sufficient conditions for the ascription of consciousness. Any attempt by science to assert that particular criteria are both necessary and sufficient for ascribing consciousness is unwarranted.

[ii] Absent cases where brain activity has ceased. However, as there is no cessation of brain activity in cases of PVS, this proviso is not relevant to the present discussion [see Chapter 1].

[iii] That is the differential diagnosis between PVS and the conditions which it most closely resembles, is only marginally better than if the diagnosis was made by some random process.

[iv] Chapter 3, Section 1.

[v] Andrews (1992) at p.486.

[vi] That is a collection of symptoms that occur together without any well understood theoretical reason for such coincidence.

[vii] These are explored in Part 2 of this thesis.

[viii] McQuillen op.cit. at p.375

[ix] If in a particular context, a terminology has connotations which have not been independently established in that context, then it can be said to be ‘inappropriate’ because it creates a tendency to use the connotations as if they had been independently established.

[x] i.e. persistent.

[xi] Andrews (1992) at p. 486.

[xii] As in the President’s Commission Report; see section 2 of this Chapter.

[xiii] Drury The Danger of Words at p.3. He also points out the danger - which is again highly relevant in the present context -of being mesmerised by the theoretical structures of our analysis and blind to existential reality:

“And so the hypothesis which is our own useful creation, dazzles our view of things. We fail to see much that the hypothesis doesn’t include; we extend the limits of our hypothesis into regions of phantasy. Reality which lies before us at every moment is replaced by the abstract picture we have ourselves created.” [op.cit. p.100]

[xiv] Bryan Jennett and Fred Plum, ‘Persistent Vegetative State after Brain Damage - A Syndrome in Search of a Name.’ The Lancet, (1972).

[xv] ibid. p.734.

[xvi] ibid.

[xvii] ibid.

[xviii] ibid.

[xix] ibid. p.736.

[xx] ibid.

[xxi] ibid.

[xxii] ibid.

“What is common to all patients in this vegetative, mindless state is that, as best can be judged behaviourally, the cerebral cortex is not functioning...”

[xxiii] ibid. p.734.

[xxiv] ibid. [emphasis added]

[xxv] ibid.

[xxvi] ibid. [Discussed in the synopsis.]

[xxvii] ibid. p.737.

[xxviii] ibid. p.736.

[xxix] ibid.

[xxx] ibid. p.737.

[xxxi] Interpreted in a wide fashion and not restricted to verbal communication.

[xxxii] ibid. p.734.

[xxxiii] These are discussed by Jennett and Plum at pp 734-5.

[xxxiv] ibid. p.735.

[xxxv] ibid.

[xxxvi] ibid.

[xxxvii] ibid. p.736

[xxxviii] ibid. p.735. Jennett and Plum, in discussing this condition, state:

“Attempts have been made to produce apallic cats by making brain stem lesions ... These experiments are most interesting in showing the amount of complex activity which eventually returns after extensive lesions; surgical decerebration of infant monkeys is likewise followed by the return of a considerable repertoire of responsive motor behaviour, and observations on anencephalic humans surviving for some weeks reinforce the view that an appreciable range of activity and responsiveness is possible in the absence of a cortex.”

This would appear to add further support to Conclusion _{1 - 2} which stated ‘There is no area of the brain, and no specific brain activity, that is uniquely associated with the possession of consciousness.’ However, Jennett and Plum do not accept that conclusions relevant to the debate on PVS can be drawn from such experiments. They state, in a surprisingly dogmatic manner and without explicit justification, that:

“However, none of this evidence bears on the problem of mental function in adult man...” [op.cit. p.736]

[xxxix] ibid. p.736

[xl] ibid.

[xli] ibid.

[xlii] ibid.

[xliii] ibid. p.735

[xliv] The Ward case, High Court, at p.2.

“The Ward is ... in a condition which is nearly, but not quite, what in modern times has become known as persistent or permanent vegetative state.”

[xlv] ibid. p.737.

[xlvi] The reasons for the reversal of normal procedure is surely to be found in the socio-economic implications of prolonged treatment of PVS patients, implications of which the authors were not unaware. They state [op.cit. p.737]:

“Certainly the indefinite survival of patients in this state presents a problem with humanitarian and socioeconomic implications which society as a whole will have to consider.”

[xlvii] ibid. p.735.

[xlviii] This is discussed in Section 3.

[xlix] This is discussed in the Section 2.

[l] The case of Andrew Devine, which is discussed in Section 3, is an example of such a situation.

[li] M. O’C. Drury op.cit. p.3.

[lii] A PVS patient - whether defined on grounds of PVS_BEH or PVS_MTL - cannot communicate; thus, inability to communicate is a necessary condition for PVS howsoever defined; what is at issue is not the necessity of the condition but the advisability of making its existence explicit. It is a corollary of this approach that ‘possession of consciousness’ be no longer used as the criterion for differentiating PVS from Locked-In Syndrome; if this were not so then those patients who had lost the ability to communicate but were still conscious would be neither ‘PVS’ not ‘Locked-In Syndrome’. (These question are discussed further in the later sections of this chapter.)

[liii] in that the ability to communicate to a specific level is a yes/no condition, unlike the possession of consciousness. [Susan Greenfield, for example, has described consciousness as being analogous to a dimmer switch rather than an on/of switch.] This is discussed further in Section 5.

[liv] McQuillen op.cit. p.375:

“ In recent years, some researchers have emphasised the essentially clinical nature of the ‘vegetative state’ … but [this] is flawed from the start, since the syndrome is just that: a ‘set of symptoms which occur together,’ by no means precise, easily recognised or even well accepted.“

[lv] ibid. p.736.

“We propose this as the most satisfactory term to describe this syndrome ...”

[lvi] ibid. p.736

“Although we would not deny that a continuum must exist between this vegetative state and some of the others described, it seems wise to make an absolute distinction ...”

[lvii] discussing the case of Andrew Devine (see Section 3). Dr Andrews was quoted in an article in The Times March 27^th 1997 entitled ‘Joy for parents as Hillsborough victim 'talks' back’.

[lviii] President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research (1983).

[lix] The Multi-Society Task Force on PVS:

- ‘Medical Aspects of the Persistent Vegetative State’ (First of Two Parts) The New England Journal of Medicine (1994):

- ’Medical Aspects of the Persistent Vegetative State’ (Second of Two Parts) The New England Journal of Medicine (1994).

[lx] Institute of Medical Ethics Working Party on the Ethics of Prolonging Life and Assisting Death ‘Withdrawal of life-support from patients in a persistent vegetative state.’ The Lancet (1991).

[lxi] BMA Guidelines on Treatment Decisions for patients in Persistent Vegetative State; Medico-Legal Journal of Ireland (1996).

[lxii] President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research (1983). p.174.

[lxiii] ibid.

[lxiv] or the name resolving the question.

Jennett and Plum had considered, and rejected, the use of the term ‘unconscious’ in relation to PVS patients:

“Once past the acute stage these patients are neither unconscious nor in a coma in the usual sense of these terms which imply a sleep-like insensibility.” [op.cit. p.734]

[lxv] They acknowledged the uncertainty implicit in any empirical judgement which they recognised to be:

“... especially serious in predictions about unconsciousness because the evidence ... is still quite limited. The overall number of patients is small, and most cases have not been carefully studied or adequately reported.” [op.cit. p.176 footnote]

The awareness of such levels of uncertainty did not, however, diminish their enthusiasm for the term ‘permanent’ even though such a term connotes quite a different state of affairs to that which exists; indeed the term may, because of its connotations, become a self fulfilling prophecy.

[lxvi] ibid. p.176.

[lxvii] A scenario highlighting the possible misleading effects of such terminology, is given in Section 6.

[lxviii] Neither ‘locked-in syndrome’ nor ‘Guillain-Barré syndrome’ feature in the index to the report.

[lxix] The deliberations of the “The Multi-Society Task Force on PVS” have been considered earlier where the evidence for their assertions that PVS patients had no level of consciousness and could not experience pain, were considered. [see Chapters 1 and 3]

The emphasis in this section is on:

i) how the Task Force distinguished between ‘locked-in syndrome’ and PVS; this distinction is crucial to any discussion of misdiagnosis.

ii) their recommendations on terminology which also impacts on the discussion of misdiagnosis.

[lxx] These criteria have been adopted, in a slightly amended form, in a report by Grubb et al ‘Doctors’ views on the management of Patients in Persistent Vegetative State: A European Study’. This report lists (at p.11) the amended set of criteria as:

“1. No evidence of awareness of self or environment.

2. All responses are reflex in nature

3. No meaningful or voluntary response to stimulation ( visual, auditory, gustatory, olfactory or tactile)

4. No evidence of language comprehension or expression

5. Intermittent sleep-wake pattern

6. Variable preserved cranial nerve reflexes

7. Sufficient preserved hypothalamic and brainstem autonomic function to permit prolonged survival with medical and nursing care.”

[lxxi] (pupillary, oculocephalic, corneal, vestibulo-ocular, and gag)

[lxxii] Part 1 p.1500.

[lxxiii] i.e. permanent vegetative state.

[lxxiv] ibid. p.1501. However, they do use the term ‘permanent’ but in a more restricted sense:

“A wakeful unconscious state that lasts longer than a few weeks is referred to as a persistent vegetative state … A patient in a persistent vegetative state becomes permanently vegetative when the diagnosis of irreversibility can be established with a high degree of clinical certainly ... We believe there are sufficient data on the prognosis for neurologic recovery to allow us to distinguish between persistent and permanent vegetative states.” [Part 1, p.1501]

and

“On the basis of these probabilities, a persistent vegetative state can be judged to be permanent 12 months after a traumatic injury in adults and children; recovery after this time is exceedingly rare and almost always involves a severe disability.” [Part 2, p.1575]

[lxxv] at the time of writing i.e. 1994.

[lxxvi] Part 1 p.1501.

[lxxvii] Andrews (1993a) p.1600.

[lxxviii] The concept of ‘personhood’ is discussed in Chapter 10.

[lxxix] The terms ‘consciousness’ and ‘awareness’ are used interchangeably In the Multi-Society Task Force report; see Part 1 p.1500.

[lxxx] Part 1 p.1500:

“The vegetative state is a clinical condition of complete unawareness ... accompanied by sleep-wake cycles ... [it] may be transient ... or permanent.”

[lxxxi] Part 1 p.1500:

“The distinguishing feature of the vegetative state is an irregular but cyclic state of circadian sleeping and waking unaccompanied by any behaviourally detectable expression of self-awareness.”

[lxxxii] p.1501.

[lxxxiii] Jennett and Plum p.736:

“Such patients [i.e. ‘locked-in syndrome’ patients] are entirely awake, responsive and sentient, although the repertoire of response is limited to blinking, and jaw and eye movements.”

[lxxxiv] Part 1 p.1502, Table 1.

[lxxxv] An alternative definition of PVS is set out in Section 5.

[lxxxvi] Part 1 p.1502

[lxxxvii] ibid.

[lxxxviii] ibid.

[lxxxix] ibid. [emphasis added]

[xc] Part 1 p.1506

[xci] Part 2 p.1578

[xcii] Chapter 3 Section 1.

[xciii] McQuillen op.cit. p.375

[xciv] ibid.

[xcv] Andrews (1996)

[xcvi] Part 2 p.1576.

[xcvii] Jennett and Plum [op.cit. p.736]:

“This term [locked-in syndrome] was coined by Plum and Posner to describe the ... mute but fully alert state. ... Such patients are entirely awake, responsive and sentient, although the repertoire of response is limited to blinking, and jaw and eye movements. One patient ... signals by Morse Code, using blinks and jaw movements ...”

[xcviii] Part 2 p.1576.

[xcix] in Chapter 3 Section 1.

[c] Institute of Medical Ethics Working Party on the Ethics of Prolonging Life and Assisting Death ‘Withdrawal of life-support from patients in a persistent vegetative state.’ The Lancet (1991) at p. 97.

[ci] ibid. p.96 [emphasis added]

[cii] ibid. [emphasis added]

[ciii] ibid. p.97

[civ] ibid.

[cv] ibid.

[cvi] ibid. p.98

[cvii] ibid. p.97

[cviii] The term ‘permanent’ can be used in at least two senses, which can be best explained by considering the following examples:

(i) “He lives permanently in Ireland”

(ii) “The car is uninsured because it is permanently off the road.”

In the first example the use of the term “permanent” is not invalidated by an occasional holiday abroad; whereas in the second example the use is invalidated by the occasional trip to town.

The first use allows occasional exceptions; it could be described as the statistical meaning and is denoted by ‘permanent_S’. The second use permits no exceptions; it could be described the logical meaning and is denoted by ‘permanent_L’.

The term ‘permanent’ was used in the sense of permanent_S by the Multi-Society Task Force; it was used in the sense of permanent_L by The Institute of Medical Ethics working party, by the President’s Commission (although they equivocated) and by the BMA Guidelines which are discussed in the next subsection.

[cix] where the former term describes a patient’s diagnosis prior to confirmation of the permanence of the condition.

[cx] ibid. p.58

[cxi] See page 125.

[cxii] ibid. p.1501.

[cxiii] Part 2 p.1575.

[cxiv] At footnote 108.

[cxv] At which stage the Multi-Society Task Force would classify such a patient as being permanently in a persistent vegetative state.

[cxvi] ibid. p.58.

[cxvii] ibid.

[cxviii] ibid.

[cxix] See also BMA (1999a) Withholding and Withdrawing Life-prolonging Medical Treatment : Guidance for decision making. 3C.18.1:

“Patients in pvs have a permanent and irreversible lack of awareness of themselves or their surroundings and no ability to interact at any level with those around them.”

[cxx] The guidelines suggest that the PVS condition itself is discrete:

“It considers PVS to be sufficiently discrete and extreme that its management can be defined, without raising implications for other categories of severe handicap.” [op.cit. p.58 ]

This suggestion runs counter to both Jennett and Plum, and Andrews, who regard PVS as forming a continuum with other conditions. The BMA suggestion seems designed more to allay fears of a ‘slippery slope’ than to describe a clinical reality.

[cxxi] ibid. p.58.

[cxxii] That PVS simpliciter is an irrecoverable condition is also implied by:

“[PVS] results from severe damage to the cerebral cortex, resulting in irreparable destruction of tissue in the thinking, feeling part of the brain.” [op.cit. p.58]

It is surprising that the BMA have not recommended that post-mortems be routinely performed on PVS patients so that such assertions might be verified; they ‘are currently considering the merits of this proposal.’ [op.cit. p.59]

[cxxiii] Jennett and Plum [op.cit. p.735]:

“Certainly we are concerned to identify an irrecoverable state, although the criteria needed to establish that prediction reliably have still to be confirmed. Until then ‘persistent’ is safer that ‘permanent’ or ‘irreversible’…”

[cxxiv] ibid. p.737:

“Certainly the indefinite survival of patients in this state presents a problem with humanitarian and socioeconomic implications which society as a whole will have to consider.”

[cxxv] M. O’C. Drury [op.cit. p.3]:

“[T]he chief danger of an unsystematic nomenclature is the danger of regarding its classification as mutually exclusive and completely exhaustive.”

[cxxvi] The media have also highlighted a number of cases of misdiagnosis of PVS; one such case - that of Andrew Devine - is discussed later in this section. The misdiagnosis of PVS has also been the subject of an extended television documentary (BBC 2 ‘Horizon’ broadcast on 25.11.1996 and entitled ‘The Living Death’).

It may be suggested that these cases are cases of ‘recovery’ rather than ‘misdiagnosis’; the distinction - and confusion - between ‘recovery’ and ‘misdiagnosis’ is discussed later in this section.

[cxxvii] see Appendix A, Table A-1. A number of articles of a more indirect relevance, are listed in Table A-2.

[cxxviii] i.e. false positive diagnosis of PVS. It is clear that the risk of false negative diagnosis - i.e. diagnosing a patient as not PVS when they are PVS - is minimal.

[cxxix] ‘Clinical Characteristics of Patients in the Persistent Vegetative State,’ Archives of Internal Medicine, (1991).

[cxxx] ‘Accuracy of Diagnosis of Persistent Vegetative State,’ Neurology, (1993).

[cxxxi] ‘Recovery of patients after four months in the persistent vegetative state,’ British Medical Journal, (1993).

[cxxxii] ‘Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit’. British Medical Journal (1996).

[cxxxiii] (18+37+26+43)/4 = 124/4 = 31%.

[cxxxiv] a so-called ‘weighted average’.

[cxxxv] As in Andrews (1996).

[cxxxvi] This is because the buzzer system is in reality a test of ability to communicate rather than a test of awareness; communication without awareness, unlike the converse, is clearly impossible. It is of course possible to be mistaken in the assessment that communication has been established; this question is discussed further in Chapter 10.

[cxxxvii] Assuming that the methodology of that particular study is not open to serious question; such issues are outside the ambit of this thesis.

[cxxxviii] See Appendix A for a summary of this study.

[cxxxix] The original study population was 62 patients, 11 of whom were found to have some awareness.

“The remaining 51 patients constitute the study population.” [op.cit. p.930]

This gives some indication of the focus of the study.

[cxl] ibid. p.930.

[cxli] ibid. Table 1 p.931.

[cxlii] ibid. p.932:

“This large number of patients in a PVS in our study who were diagnosed as having end-stage dementia is surprising. Patients with dementia rarely develop the profound and complete loss of awareness characteristic of PVS, and it is important to distinguish between PVS and the usual dementia state.”

[cxliii] ibid. p.932.

[cxliv] ibid.

[cxlv] See Appendix A for a summary of this study.

[cxlvi] Childs p.1465. See also p.1466:

“Of the 49 patients referred ... 37% received a change in diagnosis at or shortly after admission. There was little delay in identifying responding patients; 50% … were identified within the first day of admission and 78% … by the third day.”

[cxlvii] See Appendix A for a summary of this study.

[cxlviii] Andrews (1993b) p.1598.

[cxlix] as discussed in Section 2 supra.

[cl] Andrews (1996) p.15:

“It could be argued that the clinical team had introduced a successful treatment programme ... [however] it is our opinion that these patients were not vegetative at the time of admission.”

[cli] See Appendix A for a summary of this study.

[clii] ibid. p.13.

[cliii] ibid. p.15.

[cliv] in discussing Conclusion _{4 - 11}.

[clv] ibid. p.15.

[clvi] ibid. p.14:

“Since all patients followed verbal commands it is assumed that none were deaf or had severe hearing impairment.”

[clvii] ibid. p.15:

“The very high prevalence of severe visual impairment, to the best of our knowledge, not previously reported, is an additional complicating factor since clinicians making the diagnosis of the vegetative state place great emphasis on the inability of the patient to visually track or blink to threat.”

[clviii] Andrews (1992) p.486.

[clix] Though the authors expressed surprise at the large number of patients (25%) in a PVS who were diagnosed as having end stage dementia. [op.cit. p.932]

[clx] As mentioned earlier, the report suggested that medical staff pay particular attention to reports by the families of patients of changes in patient behaviour. In the light of this finding a study which showed that 92% of parents of children diagnosed as being in a PVS, did not accept the doctors determination that awareness was lacking in their children [cf. Borthwick (1996) p.6/15], is particularly disturbing. Earlier, when discussing Wittgenstein’s philosophy of pain judgements [see Chapter 3] - and judgements of awareness are no different - it was mentioned that the competence to make such judgements is not within the provenance of any one group but flows to us all of us from our common humanity. Indeed, if a primacy was to be accorded to any one group, then the patient’s family would be the obvious first choice - in that they would be knowledgeable of those subtleties of behaviour peculiar to the patient; an obvious second choice would be the nursing staff in that they have most opportunity to observe the patient’s behaviour. Accordingly, a finding [in The Irish Report of the Grubb Study p.28] that one third of the consultants would accord nurses no influence on a decision to withdraw ANH - [which presumably includes the ancillary question of whether the patient shows awareness] - gives particular cause for concern.

Support for the importance of listening to the perspectives of non-specialist medical staff, on the existence of patient awareness, is given by the neurologist Oliver Sachs. Sachs - in a discussion on his patients who suffered from ‘sleeping sickness’ - was asked:

“What made you dare to think that you could do anything to help them?”

Sachs responded that the nurses were convinced that, though the patients looked on the outside to be ‘petrified, there were alive, intact people inside; and that occasionally something - music, or a visit - would draw them out for a few seconds.’

[A radio interview with Barbara Myers, on BBC 4 ‘Eureka’ 1.1.1997].

[clxi] Childs p.1466.

[clxii] ibid. p.1465

[clxiii] ibid. p.1466

[clxiv] ibid.

[clxv] ibid.

[clxvi] For example, they regretted the developments whereby ‘persistent’ has come to mean ‘permanent’ and they noted that ‘confusion about the word ‘persistent’ has extremely important implications.’ See: Andrew Grubb et al Doctors’ views on the management of patients in persistent vegetative state (PVS): report of a small survey in Ireland. p.1.

[clxvii] Andrews(1992) considers the terms ‘persistent’ and ‘vegetative’ to be unfortunate:

“... ‘vegetative’ has the unfortunate connotation of ‘vegetable-like’.” [op.cit. p.486]

Andrews sees the danger of PVS becoming a “... self-fulfilling prophecy - the prognosis is poor, therefore no treatment is given, therefore the prognosis is poor.” [op.cit. p.487]

[clxviii] Andrews (1996) p.15.

[clxix] ibid. .

[clxx] ibid. .

[clxxi] ibid. . [emphasis added]

[clxxii] this is discussed in the Section 5 of this chapter.

[clxxiii] ibid. p.13:

“... the patient was then taught to press the switch once for ‘yes’ and twice for ‘no’. ”

[clxxiv] Ronald Cranford, ‘Misdiagnosing the persistent vegetative state’ Editorial British Medical Journal (1996) at p.5.

[clxxv] ibid. p.5:

“Patients who start regaining consciousness several months after the injury (late recoveries) should not be confused with patients who may have been conscious for some time before discovery (late discoveries).”

[clxxvi] Andrews [1996, p.14]:

“To avoid confusing spontaneous recovery with misdiagnosis we did not include those patients admitted within six months of their brain damage, since spontaneous recovery is not uncommon during this period. Patients were considered to have been misdiagnosed if they could follow commands consistently within our initial assessment period of six weeks.”

[clxxvii] The argument is considered in the next subsection.

[clxxviii] See Section 2.

[clxxix] These are the ‘frozen aware’ patients discussed in Section 2.

[clxxx] The Multi-Society Task Force on PVS (a) p.1501. No evidence is offered for the supposed rarity of this condition.

[clxxxi] Andrews (1996) p.14.

[clxxxii] The definition PVS_COM which is advocated in this thesis is such a definition; see also Chapter 9, 10 and Thesis Conclusions.

[clxxxiii] ibid. p.15.

[clxxxiv] Cranford op.cit. p.6

[clxxxv] The term ‘as if’ is not meant to suggest some pretence, but rather an attitude of acceptance of the fact that some patients undoubtedly are conscious and that we have no way of knowing which.

[clxxxvi] This proposal is advanced in the conclusions to Part 1 of this thesis.

[clxxxvii] PVS being defined as the lack of such manifested consciousness; if PVS is defined in terms of ‘inability to communicate’ then recovery would clearly lie in achieving the ability to communicate.

[clxxxviii] Raanan Gillon, “Patients in the persistent vegetative state: a response to Dr Andrews.” British Medical Journal (1993) p.1603:

[clxxxix] Cranford op.cit. p.6

[cxc] High Court at p.8:

“... but if such minimal cognition as she has includes an inkling of her catastrophic condition, then I am satisfied that that would be a terrible torment to her and her situation would be worse than if she were fully P.V.S.. “

The most eloquent rebuttal of such views is given by Andrews when, in speaking of 11 misdiagnosed patients, he noted:

“Only one patient showed obvious distress at his condition. He had been a professional and fully appreciated his poor physical recovery. ... Among the other patients there was no evidence that limited recovery was associated with depression or a feeling that a condition of severe disability was worse than non-sentience or death. ... the impression gained was that signs of pleasure were far more common than those of distress.”

[Andrews (1993b) p.1598-9]

[cxci] Do the predicted outcomes:

A. The patient will be severely disabled, able to speak, but totally dependent on carers but with sufficient insight to be aware of his/her condition.

B. The patient will be severely disabled, able to communicate simple needs without speech

justify the non-treating of acute infections or the withdrawal of ANH?

Andrew Grubb (1996b) et al Doctors’ views on the management of patients in persistent vegetative state (PVS): report of a small survey in Ireland.(1996) p.19 and Appendix p.3.

[cxcii] Socioeconomic considerations, such as scarcity of resources, may also have an influence on the meaning of the term ‘recovery’.

[cxciii] That is, if PVS is defined either in terms of ‘lack of consciousness’ or ‘lack of consciousness judged behaviourally’; if PVS is defined in terms of ‘inability to communicate’ then recovery would clearly lie in achieving the ability to communicate.

[cxciv] It is argued in Chapter 7 that such judgements are ethically impermissible.

[cxcv] For reasons of space, the issue of ‘scarcity of resources’ is not discussed in this thesis. However - even leaving the question of resources to one side - the ethical problems posed by the treatment of PVS patients are complex; in a situation of unlimited resources it is by no means obvious that the continued treatment of PVS patients, long after there is any realistic hope of their regaining the ability to communicate, is either ethically required or, indeed, ethically permissible. I suggest that the best way to tackle these problems from a theoretical standpoint, is to attempt to resolve the ethical questions within a framework of imagined unlimited resources and to then to study the effects of introducing the added complication of limited resources on the original analysis. This thesis addresses only the first part of this problem.

[cxcvi] Reported in The Times (27-3-1997) ‘Joy for parents as Hillsborough victim 'talks' back’; The Irish Times (27-3-1997) ‘Stadium disaster victim was comatose for five years’ and ‘Devine case raises questions about PVS, says doctor’

[cxcvii] The Times 27-3-1997.

[cxcviii] This is described in Andrews (1996).

[cxcix] Andrews (1996, p.14):

“Fifteen of the 17 misdiagnosed patients showed the ability to respond to a command … within 16 days of admission. The exception was patient B; we did not identify his responses until 25 weeks after his admission, though it was obvious from subsequent conversations with him that he had not been vegetative for some time.”

[cc] Subsection entitled ‘Ambiguities in the term ‘misdiagnosis’’ earlier in this Section.

[cci] The Times 27-3-1997.

[ccii] Jennett and Plum [op.cit. p.737]:

“Although we would not deny that a continuum must exist between this vegetative state and some others described, it seems wise to make an absolute distinction ...”

[cciii] Though Susan Greenfield, as mentioned earlier in Chapter 1, compares consciousness to a ‘dimmer switch’.

[cciv] Borthwick (1995b) p.206.

[ccv] in Section 2.

[ccvi] In that the guidelines assert that such patients have not ‘recovered’ but were originally misdiagnosed.

[ccvii] Borthwick (1995b) p.208.

To illustrate the ‘self confirming nature of the diagnostic criteria’ Borthwick cites the case of Carrie Coons who after her recovery was deemed never to have been in a PVS.

Borthwick gives an entertaining and instructive example of how the characteristics of the diagnosis are rendered immune to modification through observation.

“If you diagnose a number of people as having tuberculosis and all die, that outcome may for a time be accepted as a characteristic of the condition. If one eventually recovers, however, you will presumably modify your description of the disease to omit the words 'invariably fatal' - will do so, at least, if you follow the usual pattern of medical development If, contrariwise, you were to work on the rather more specialized PVS model of nosology you would note that while all patients with tuberculosis invariably died there was another rarer, different, but observationally indistinguishable condition called pseudotuberculosis whose patients invariably recovered. It is not clear that this is the most helpful approach to the problem.”

[Borthwick (1996) p.170]

[ccviii] i.e. The Multi-Society Task Force on PVS (a) p.1501.

[ccix] Borthwick (1996) p.187.

[ccx] A quotation from Chris Borthwick’s web page.

See also Borthwick (1995b, p.206):

“In simplifying the issue to the point where a clear moral answer emerges, they [i.e. medical ethicists] eliminate the uncertainty that constitutes the source of the primary moral difficulty.”

[ccxi] Borthwick (1995b) p.206.

[ccxii] quoted in Borthwick (1996) p.168.

[ccxiii] Borthwick (1995b) p.208.

[ccxiv] Carrie Coons had been diagnosed a PVS. A court application had been made, and granted, to withdraw ANH. However, before the tube feeding could be withdrawn, Carrie Coons woke up and started eating and speaking. She said that she did not wish to die. [Borthwick (1996) p.168].

[ccxv] Borthwick (1996) p.186.

[ccxvi] Although disquiet has been shown by some academics in newspaper articles e.g.

(i) Prof. Binchy, of the TCD Law School, said members of the Supreme Court had used 'primitive philosophical tools’ in discussing PVS. [The Irish Times 12.8.96]

(i) In speaking of the practice of treatment withdrawal for PVS patients, Pat Walsh, acting director for the centre of Medical Law and Ethics was quoted in the London Independent (13.2.1997) as saying "There is a pressing need for further research to unpack the implicit moral reasoning behind what doctors are doing."

(i) Gerry White, of the TCD Law School, criticised the lack of clarity in relation to the philosophical issues in the Supreme Court judgement in the Ward Case. [The Irish Times 27.3.1996].

[ccxvii] The role of the medical ethicist is best compared to that of a company auditor who gives an ‘imprimatur’ to the financial reports of the company. His obligation is to go beyond the assurances of the directors of the company that all is as it should be, and to verify, for himself, that this is so; an auditor recognises that his report will be relied on by the general public; he has an obligation to ensure that matters of importance are independently assessed and are not taken on trust.

In a similar fashion a medical ethicist should not take the technical aspects of the problems on which they offer comment, as a given, too esoteric for an independent examination; their obligation is, equally, to scrutinise all.

[ccxviii] Borthwick (1995b) p.208.

[ccxix] ibid. p.207.

[ccxx] ibid.

[ccxxi] i.e. from Locked-In Syndrome.

[ccxxii] Borthwick (1995a) p 24.

[ccxxiii] Borthwick (1995b) p.205.

[ccxxiv] ‘Death’ - and in particular the concept of ‘a’ good death’ - is considered in Chapter 9. The concept of ‘personhood’, and a necessary condition for its ascription, is considered in Chapter 10.

[ccxxv] in discussing the Andrews Report (1996) on misdiagnosis of PVS.

[ccxxvi] EC BIOMED 1 ‘Inquiry Into Law And Regulation - An Overview.’ PVS Questionnaire 1996. at p.1.

[ccxxvii] The competing conditions, as described by Jennett and Plum, were considered in Section 1 of this Chapter; the conclusion reached there was:

Conclusion _{4 -3} : According to Jennett and Plum, the diseases of responsiveness that might be confused with PVS are ‘Akinetic Mutism’, ‘Locked-In Syndrome’ and ‘Apallic Syndrome’. ‘Akinetic Mutism’ is better described as a disease of limited responsiveness rather than unresponsiveness; ‘inability to communicate’ is either not present or, if present, is not believed to be permanent. In ‘Locked-In Syndrome’ communication is possible thought by a primitive means. ‘Apallic Syndrome’ is a condition which, in so far as is differs from PVS, is characterised by the inability to communicate not being permanent.

[ccxxviii] The Multi-Society Task Force on PVS (a) p.1502 et seq.

[ccxxix] President’s Commission [p. 174, footnote 9]:

“The term ‘vegetative state’ (or, more anatomically, ‘apallic syndrome’) denotes unconsciousness with persistent brain-stem functions that maintain subsistence functions and often wakefulness.”

[ccxxx] in Section 3.

[ccxxxi] Erich Schmutzhard. ‘Persistent Vegetative State : Ethical problems arising for the doctor’. European Conference on The moral issues surrounding the treatment and health care of patients in persistent vegetative state. Conference file. Bonn: IWE, (1995).

[ccxxxii] ibid. p.4.

[ccxxxiii] ibid.

[ccxxxiv] Jennett and Plum op.cit. p.735.

[ccxxxv] Table 4-5.

[ccxxxvi] Jennett and Plum op.cit. p.736

[ccxxxvii] Multi-Society Task Force (a) p.1502 [emphasis added] The Report continues:

“Diagnosis of the Locked-In Syndrome is established by clinical examination.”

and goes on to suggest that PET scans:

“... have shown higher metabolic levels in the brains of patients in the Locked-In Syndrome that in patients in the persistent vegetative state.” [op.cit. p.1502]

The circularity of this reasoning has been mentioned in Section 2 and has also been pointed out by Borthwick (see Section 4).

[ccxxxviii] Schmutzhard op.cit. p.4.

[ccxxxix] i.e. either PVS or Locked-In Syndrome.

[ccxl] “To say, as the consensus statement says, ‘By definition, patients in a persistent vegetative state are unaware of themselves or their environment.’ is to raise evasion to the level of a diagnosis and denial to the status of a philosophy.”

[Borthwick (1996) p.14]

[ccxli] The term ‘Locked-In Syndrome’ was coined by Plum and Posner in 1965; see: Jennett and Plum p.736

[ccxlii] Andrews (1996) p.15.

[ccxliii] Cranford op.cit. p.5.

[ccxliv] as discussed in Section 2.

see also Borthwick’s comment that the Multi-Society Task Force report raised - ‘denial to the status of a philosophy.’ [Borthwick(1996)p.187] and further:

“Why are the qualities of absence of consciousness, clear differentiation and established irrecoverability so important that normal canons of reason must be stretched to accommodate them?” [Borthwick (1995a) p25]

[ccxlv] Conclusion _{4 -12}.

[ccxlvi] in that the level of misdiagnosis is not acknowledged by such commentary; see, for example, Ronald Dworkin’s discussion mentioned in Section 3.

[ccxlvii] See Section 4.

[ccxlviii] Conclusion _{4 -16}.

[ccxlix] Conclusion _{4 -17.}

[ccl] when PVS is understood as PVS_COM - see Section 1.

[ccli] used in the wider sense of Subsection 2 of this Section.

[cclii] the term ‘as if’ is not meant to suggest some pretence, but rather an attitude of acceptance of the fact that some patients undoubtedly are conscious and that we have no way of knowing which.

[ccliii] This is also in accord with the recommendations of the Childs study; see Appendix A.

[ccliv] A study, mentioned by Borthwick, found 92% disagreement between doctors and the parents of children, diagnosed as PVS, regarding the children’s awareness. [Borthwick (1996) p.174.]

[cclv] Andrews (1992) p.486.

[cclvi] The case of ‘Patient B’ in the Andrews 1996 study exemplifies what is being suggested; responses were identified only after 25 weeks of admission to the programme and even then the only response was a slight shoulder shrug. [Andrews (1996) p.14]

[cclvii] Andrews (1993b); see Table on p 1598.

[cclviii] Though he noted [op.cit. p.1599] that:

“Some experts regard this as a reflex pattern, and it is therefore debatable whether this is a true sign of awareness.”

[cclix] This is the case referred to by Raanan Gillon in his article ‘Patients in the persistent vegetative state: a response to Dr Andrews. British Medical Journal, (1993).

[cclx] In that there is a possibility that the ability to communicate may be regained; as such the patient has an ‘attenuated personhood'. (The concept of ‘attenuated personhood' relates to an individual who though not having a present ability to communicate, may regain this ability at some future stage; the rights of ‘attenuated persons’ differ from those of ‘persons’. The concept of ‘attenuated personhood' is discussed Chapter 10.)

[cclxi] Andrews (1993b) p.1599.

[cclxii] ibid. p.1598.

[cclxiii] The fact that medical professionals may well be interested parties in the debate on the withdrawal of ANH for PVS and other, patients should not be overlooked. Many cases of medical negligence result in brain damage and such patients may well be diagnosed as PVS; such indeed were the circumstances in the Ward case. The damages in a medical negligence action are calculated on the probable cost of providing life-long medical care; thus, if the accepted practise is to withdraw life-sustaining treatment after one year, then the premiums for medical insurance are substantially reduced as are awards of damages (to, perhaps, 10% of what would be awarded if normal life expectancy were assumed). The existence of such a scenario was argued in a recent English case:

“A hospital has been accused of turning off the life-support machine of a brain-damaged baby to save itself the cost of the infant’s long-term care. ... A dead baby is ‘worth’ £7,500, according to the compensation tables. This compares with a possible multi-million pound bill for a hospital found liable for the lifelong care of a severely handicapped child. ... The hospital has admitted that its mistakes led to the baby’s death ...”

[The Sunday Times 30^th July 2000 in article entitled ‘Baby’s life support cut off ‘to save care costs’’]

[cclxiv] Institute of Medical Ethics Working Party on the Ethics of Prolonging Life and Assisting Death ‘Withdrawal of life-support from patients in a persistent vegetative state.’ The Lancet 1991 at p. 97.

[cclxv] In Part 3 of this thesis it is argued ‘personhood’ is intimately connected with the possession of rights; conversely a denial of rights implies a denial of personhood.

[cclxvi] Sunday Times 2.11.1997 reported a Professor White, who had given head transplants to monkeys, as stating that: "Researchers believe that there was little disturbance to the monkeys higher brain functions as a result of the procedure." He urged that those in a PVS, in which there was still some brain activity, be used as donors.

In the same article Richard Nicholson, Editor of the Bulletin of Medical Ethics, was quoted as stating (of this proposal) that "It is indicative of the disastrous route that Western medicine is taking."

[cclxvii] in the context of PVS.