Appendix B

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

Appendix B: Borthwick’s criticism of the definition of PVS

Chris Borthwick has, in a number of articles, criticised the coherence of the definition of PVS; three of these articles are summarised in this appendix. These articles are listed in Table B-1, their respective abstracts are listed in the Table B-2:

1.	‘Persistent Vegetative State; A Syndrome in Search of a Name, or a Judgement in Search of a Syndrome’. Monash Bioethics Review 1995, April 14, (2): 20-26.	cited as (1995a)
2.	‘The Proof of the Vegetable; A Commentary on Ethical Futility’. Journal of Medical Ethics 1995, August 21, (4): 205-8.	cited as (1995b)
3.	‘The Permanent Vegetative State; Ethical Crux, Medical Fiction?’ Issues in Law and Medicine. 12, 2 (1996):167-188.	cited as (1996)

Table B-1: Borthwick’s articles on the coherence of the definition of PVS.[i]

1995(a)	Abstract ::- It is now over twenty years since Jennett and Plum in 1972 coined the name ‘persistent vegetative state’ to describe a state that is "neither unconscious[ness] nor coma in the usual sense of these terms ... [but rather] wakefulness without awareness". It is a term that has been widely used since, and the mantraps and spring guns that were built into the definition at the outset are still dangerous. Definitions decided on at the outset have channelled the debate ever since, and are still influential. It is important to re-examine the first steps in this area to see why that course was adopted then and why it is still directing us now.
1995(b)	Abstract ::- Patients with ‘persistent vegetative state’ (PVS) are often cited in discussions of ethicists as examples of human beings who are unconscious and do not experience life, and a number of theoretical and practical recommendations have been made on that basis. This article examines the evidence and the theoretical rationale for the belief that people with PVS are unconscious and finds them wanting. This conclusion is related to the discipline of ethics.
1996	Abstract ::- In 1994 a Multi-Society Task Force made up of representatives of the American Academy of Neurology, the Child Neurology Society, the American Neurological Association, the American Association of Neurological Surgeons, and the American Academy of Paediatrics produced a Consensus Statement on the Medical Aspects of the Persistent Vegetative State (PVS). This Statement presents a picture of the degree of diagnostic certainty achievable in this area that is in many respects misleading. Its attempt to propose a condition called Permanent Vegetative State, which would be based on a high degree of medical certainty either that there is no further hope for recovery of consciousness or that, if consciousness were recovered, the patient would be left severely disabled, confuses two different issues.

Table B-2: The abstracts of Borthwick’s articles as listed in Table B-1

The 1995(a) paper

This paper is a critical review of the Jennett and Plum paper of 1972 which named the syndrome PVS as such.[ii] Borthwick’s main assertions are that:

(i) Because Jennett and Plum posit a large number of pathways into PVS,[iii] and a large number of brain states that produce PVS,[iv] it is ‘not necessarily obvious that all these would produce an identical state.’ [v] Essentially, Jennett and Plum in defining PVS were considering a situation[vi] and not a condition. A condition has an organic, or theoretical unity, and its symptoms manifest an inner coherence; a syndrome, in contrast, is defined simply by the actual coincidences of its symptoms. Borthwick argues that if many cases of a syndrome also share some property ‘X’, it is less justifiable to assume that all cases share this property ‘X’, than if a condition - rather than a syndrome - had been under discussion; this, he suggests, when applied to the debate on PVS casts doubt on the assertion that because some PVS patient may lack consciousness and the ability to experience pain, all do.

(ii) Jennett and Plum’s presentation was conditioned by the knowledge that ethical questions involving the possibility of terminating the lives of PVS patients would emerge. They knew that these ethical questions would be greatly simplified if it were possible to establish that PVS patients had no consciousness, that their condition was irrecoverable and that they could be reliably diagnosed. Borthwick states:

“If it was not possible to establish these three propositions reliably from the available evidence, and Jennett and Plum concede that it was not, then it might be of assistance if they could instead be smuggled into the debate by being incorporated into the definition of PVS; and this Jennett and Plum virtually do.” [vii]

(iii) Because Jennett and Plum used behavioural observation to judge the presence of consciousness and because, at the margin between ‘locked-in syndrome’ and PVS, the ‘behavioural characteristics that denote consciousness are minute,’ [viii] the danger of patients being diagnosed as PVS when in fact they are not, is particularly acute. The criterion often used in relation to the locked-in syndrome, is the ability to signal by using eye movements. By considering the example of such a Locked-In Syndrome patient and by imagining a medical condition which affects eye control - many of which conditions exist - Borthwick asks as to how such a patient would be distinguished from one in a PVS. Furthermore, such an example - in that it is accepted that the patient is conscious - casts doubt on the general assertion that PVS patients are not conscious.

(iv) Borthwick questions why many who have recovered from PVS “... have apparently never been asked whether they felt pain or not.” [ix] The question of whether PVS patients can feel pain has, he suggests, been resolved by a sleight of hand:

“If, contrariwise, the family wish to believe that the patient is not suffering, then that, too, can be more easily dealt with by a clear statement that he or she can, by definition, feel no pain.” [x]

The 1995(b) paper

This paper is concerned with the indeterminacy of both patient consciousness and ability to experience pain, and the related difficulty in distinguishing conceptually between PVS and ‘locked-in syndrome’. In support of this second point Borthwick quotes from the transcript of the Karen Quinlan case where an expert witness - who had been asked about the theoretical distinction between ‘locked-in syndrome’ and PVS - was unable to resolve the hypothetical problem of diagnosing a ‘locked-in syndrome’ patient who had difficulty in controlling their eye movement. The witness accepted the theoretical possibility of a PVS patients being conscious but said “I think it’s one of the most horrendous things you can imagine.” [xi] This leads to Borthwick’s most original points which relate to the reasons why, in the face of evidence of possible consciousness, there is such a reluctance to accept the fact that some PVS patients are indeed conscious. His first observation is closely related to the ‘denial of death’:[xii]

“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.” [xiii]

His second observation is even more pertinent. It focuses on medical ethicists, their need for the ‘syllogism of hard logic’, [xiv] and their refusal to acknowledge the uncertainties inherent in real situations with their ‘inevitable ambiguities of uncertain knowledge and unclassifiable pathology’. [xv] The inevitable result of such simplification, argues Borthwick, is that the ‘solutions’ advocated by such ethicists are highly inappropriate.

The 1996 paper

This paper is a critical review of ‘The Multi-Society Task Force on PVS’ report. Borthwick again considers the difficulty in distinguishing theoretically between the ‘locked-in syndrome’ and PVS and suggests that:

“The fundamental issue is not 'Can cases of locked-in syndrome be confused with cases of PVS?' but 'Is it possible that PVS is the same thing as locked-in syndrome, but without purposive eye movement?' ” [xvi]

He examines the difficulty in interpreting what may be very slight signs of behavioural awareness and quotes a study showing that 92% of parents of children, diagnosed as being in a PVS did not accept the assertions by physicians that awareness was lacking in their children.[xvii]

Borthwick analyses the neurological studies used by the Multi-Society Task Force on PVS in support of their contention that PVS patients lack awareness. He points out that due to the non-existence of any tests which could independently confirm awareness, the Task Force’s use of neurological tests involves a circularity of reasoning. The Task Force had sought to draw, from the occurrence of certain results which were consistent with the absence of awareness, the conclusion that awareness was absent. He argues that such a conclusion was not justified as these results are equally consistent with alternative hypotheses - such as a diagnosis of ‘locked-in syndrome.’ He criticises the Task Force’s use of particular neurological studies:

(i) their use of PET scan studies of PVS patients to suggest that these ‘... show levels far lower than those in patients who are aware or in a locked-in state.’ Borthwick consulted the original study used by the Task Force as justification for this and for the statement that:

“... no overlap in metabolic impairment was noted when these patients were compared with three patients who had the locked-in syndrome.” [xviii]

The original study had cited two cases of overlap.[xix]

(ii) their use of cerebral blood flow levels. Borthwick cites a study to show the existence of “... normal cerebral blood flow in patients in a persistent vegetative state.” [xx]

The absence of brain activity in PVS patients similar to that found in conscious subjects who are experiencing pain is sometimes used as an argument to suggest that PVS patients do not experience pain. Borthwick counters this argument by quoting[xxi] from the neurologist Oliver Sacks[xxii] to the effect that there is some evidence that pain can relocate its functions and from other studies which show the essential malleability of the brain in regard to its functions.[xxiii]