| Introduction |
Appendices |
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| Legal Cases |
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“Mentally perhaps there is room for enlivenment. An attempt at reflexion at least. At recall. At speech even. Conation of some kind however feeble. A trace of emotion. Signs of distress. A sense of failure. Without loss of character. Delicate ground. But physically? Must he lie inert to the end? Only the eyelids stirring on and off since technically they must. To let in and shut out the dark. Might he not cross his feet? On and off. Now left on right and now a little later the reverse. No. Quite out of keeping. He lie with crossed feet? One glance dispels.”
Beckett [i]
In beginning this thesis my main concerns were that:
* the dogmatic assertions which were often encountered in the medical literature to the effect that PVS patients lack consciousness and cannot experience pain, might not be justified;
* although I believed that the decision in the Ward case to withdraw ANH was in the circumstances the correct one, I had doubts as to whether the grounds[ii] used by the Irish Courts to justify that decision, were appropriate in that they appeared to be applicable to cases of disability - particularly infant disability[iii] - despite the protestations of the judges in the Ward case to the contrary.
I will discuss these issues separately.
The possibility that PVS patients can experience pain
There appeared to be two possible avenues of approach to this problem:
(i) by questioning patients who had recovered from PVS in order to determine whether they did, in fact, experience pain whilst diagnosed as PVS.
(ii) by returning to first principles to find out whether scientific tests existed which could determine whether a given patient - and, in particular, a patient diagnosed as PVS - was conscious or in pain.
The assertions that PVS patients lacked consciousness and the ability to experience pain are treated in the literature as being scientific propositions. As such, they are, presumably, open to independent verification, yet the rate of misdiagnosis of PVS (and, by implication, of consciousness[iv]) is close to 50% - the diagnosis of PVS is no more reliable than if made by the tossing of a coin!
At this stage of my reading I had the good fortune to encounter the writings of Chris Borthwick who appeared to be a lone voice in his protestations that the emperor (i.e. PVS) was, if not naked, at least very scantily clad. Borthwick argued that the misdiagnoses of PVS originate in:
* the imprecise definition of PVS;
* the concern to identify an ‘irrecoverable condition’ (the ability to identify such a condition would be of considerable benefit in times of scarce medical resources);
* the presence of ‘denial’ in the medical carers who find the possibility that PVS patients might be conscious, too horrendous to contemplate.[v]
Is PVS an irrecoverable condition?
Jennett and Plum, in their paper which defined the condition PVS as such, aimed at identifying an ‘irrecoverable’ condition;[vi] as a result of this, most subsequent discussion of PVS has confused questions of diagnosis and prognosis. The BMA’s statement that recoveries from PVS are, in fact, cases of misdiagnosis[vii] - without the BMA actually specifying the possible medical conditions which theoretically might have been correctly diagnosed - compounds this development. It also ensures that the questioning of ‘recovered’ PVS patients as to their experiences whilst they had been diagnosed as PVS, is logically irrelevant to the question of whether PVS patients are conscious and can feel pain.[viii]
Do PVS patients necessarily lack consciousness?
Jennett and Plum in their original paper[ix] were scrupulous in their insistence that:
(i) PVS was not a discrete medical condition but lay on a continuum with other conditions such as locked-in syndrome;
(ii) the judgement that PVS patients lacked consciousness was made on behavioural grounds and did not preclude the possibility[x] that such patients might indeed be conscious though unable to manifest their consciousness.
Discussions of PVS subsequent to Jennett and Plum have lost sight of these important reservations and have attempted to define PVS as being a condition where consciousness (and with it the ability to feel pain) is absent; one consequence of this development is that it implies that a determination that a patient - who had been diagnosed as PVS but who, at the time of the diagnosis, was, in fact, conscious[xi] but showed no manifestations of this - is necessarily a case of misdiagnosis.[xii] This adds a level of confusion to the debate on PVS that was absent in the original Jennett and Plum approach.
The need for a recasting of the definition of PVS
The attitude of the BMA to cases of supposed ‘recovery’ from PVS, the extent of the misdiagnosis of PVS, the suggestion that PVS appeared to be in danger of becoming a ‘catch all’ category[xiii] to describe those who are minimally aware:[xiv] all show the need for a re-examination of the definition of PVS.[xv] In an attempt to find a path out of the philosophical confusions which underlie much of the discussion of PVS, I returned to the original Jennett and Plum definition and argued that it is capable of being recast in terms of ‘inability to communicate’ rather than in terms of ‘lack of consciousness’. I have proposed the following definitions:
* ‘The persistent vegetative state is characterised by seeming wakefulness in the absence of an ability to communicate.’ [xvi]
* ‘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.’ [xvii]
These definitions (which are securely grounded in Jennett and Plum’s original analysis) allow a clear distinction to be drawn between cases of ‘recovery’ and ‘misdiagnosis’;[xviii] they cast an obligation on physicians to actively attempt to achieve communication with a patient before diagnosing PVS[xix] and thus, bring the diagnosis and treatment of PVS patients into line with current best practice.[xx] Most importantly, the proposed definitions help reconcile the criteria used by a patient’s family in seeking to answer the question ‘Is there someone in there?’, with the diagnostic criteria used by the patient’s medical carers;[xxi] finally, they also provide an appropriate framework for the resolution of ethical problems associated with ‘end-of-life’ decisions for PVS patients.[xxii]
Though these definitions do not preclude the possibility that patients (correctly) diagnosed as PVS might be conscious or experience pain; they obviously cannot resolve it. The question needs further consideration.
The determination of consciousness and ability to experience pain
A reading of the medical literature on PVS suggests that assertions that PVS patients lack consciousness and the ability to experience pain are securely based in scientific fact and open to independent verification. They are not. Wittgenstein (in his analysis of how we ascribe pain to others) and Dennett (in his analysis of why we refuse to ascribe pain to a robot) clearly show that ascriptions of consciousness and pain to others have, as a precondition, that we have an attitude to these others that they are of a ‘type’[xxiii] which may be conscious and be in pain; this precondition (being a ‘value judgement’) is not amenable to a scientific determination; it is dependent on the existence of empathy between the observer and the observed.[xxiv] Only if this precondition is satisfied can we proceed to specify criteria for ascribing pain. Accepting, for the sake of argument, that PVS patients (being human) may be conscious and experience pain, how might we go about determining if they actually do? One possibility is in using the generally accepted correlation between brain activity and possession of consciousness; however, PVS patients do manifest brain activity and there is no specific brain activity which is unambiguously linked to the possession of consciousness and which is absent in PVS patients. The position is similar in relation to pain. There are no areas of the brain - no ‘pain centres’ - which automatically ‘light up’ when a subject is in pain. The fact that communication is not possible with PVS patients and that, in brain damaged patients, brain function is often reassigned to other areas of the brain, render the problem even more intractable in that the establishing of correlations between brain states and the felt experience of pain is not even theoretically possible. Thus, even accepting that PVS patients may be conscious and may experience pain, brings the problem no closer to a definitive resolution; doubt it seems is intrinsic to the problem.
At this stage it becomes necessary to acknowledge this doubt and to incorporate the existence of our uncertainties into our analysis. A general method for incorporating the existence of doubt into medical decision-making has been proposed which can be applied to pain judgements in relation to PVS patients: it implies that - because treating a patient as being unable to experience pain (when, in fact, they are able) is so considerably more undesirable than treating a patient as being able to experience pain (when, in fact, they are unable):
‘All
PVS patients should be treated as if they are conscious and can
experience pain.’ [xxv]
Support for this conclusion comes from a recent editorial in Anaesthesia (the journal of the Royal College of Anaesthetists)[xxvi] which has called for anaesthetic to be routinely given during operations to remove organs from those patients who had been adjudged to be ‘brainstem dead’; this recommendation was based on arguments similar to those advocated above in connection with PVS patients.
The possibility that the Ward decision may engender a ‘slippery slope’
My criticisms of the Ward decision are threefold:
(i) its refusal to acknowledge that the withdrawal of ANH is a strategy which has as its goal the death of the patient.[xxvii]
(ii) its acceptance of the patient’s ‘best interests’ as being a suitable ground for permitting the withdrawal of ANH.
(iii) its not insisting on a continuing supervisory jurisdiction whereby the withdrawal of ANH would, in all cases, require the prior approval of the courts.[xxviii]
The role of death
I believe that the most important step in analysing cases such as the Ward is to bring the role of death centre stage and to acknowledge that the achievement of a peaceful death for the patient is the implicit criterion of success in the withdrawal of ANH. The greatest hindrance to the acceptance of such a proposal lies in the belief the death is necessarily an evil. I have argued that the proposition ‘Death is an evil’ is, if unqualified, unsustainable; this implies that some deaths are a ‘good’ and that it is meaningful to speak of ‘a good death’. I found the writings of Daniel Callahan, Ernest Becker and Elisabeth Kübler-Ross of considerable assistance in developing the idea of ‘a good death’.
In speaking of death being, in certain circumstances, a ‘good’, the question immediately arises as to when it might be permissible to occasion the death of another. Is the judgement that it would be in their ‘best interests’ sufficient?
‘Best interests’ judgements
The difficult in criticising ‘best interests’ as an appropriate standard on which to base health care decisions is that its very name appears to confer an ethical ‘nihil obstat’; that this is an illusion is evident if we consider our unwillingness to cede to others the right to decide on our behalf; furthermore, the existence of requirements for obtaining ‘informed consent’ also provides eloquent testimony to the dangers of an unfettered use of ‘best interests’ judgements in health care decisions. When such decisions are to the effect that a patient is ‘better off dead’ then the need for vigilance is all the greater.
One of my aims in this thesis was to puncture the illusion that ‘best interests’ is an obvious and incontrovertible standard on which to base health care decisions and one to which only the most obdurate critic could raise objection; in furtherance of this aim I relied on two arguments - the first based on drawing a distinction between ‘absolute quality of life’ judgements and ‘incremental quality of life’ judgements, the second on building on a distinction (made by Phillipa Foot) between the obligations that flow from Charity and those that flow from Justice.
‘Best interests’ judgements are essentially equivalent to ‘quality of life’ judgements. A distinction can be drawn between quality of life judgements which seek to estimate the incremental change of a proposed intervention on a patient’s quality of life, and those which seek to estimate the totality of the quality of life of a patient at any moment in time.[xxix] I have argued that though ‘absolute quality of life’ judgements may be used in making ‘incremental quality of life’ judgements, they are not logically required in doing so; and that, accordingly, ‘incremental quality of life’ judgements can be made in the absence of an ability to make ‘absolute quality of life’ judgements. I have proposed that because ‘absolute quality of life’ judgements conflict with certain ethical principles they should not be used; ‘incremental quality of life’ judgements are, in contrast, ethically unobjectionable.
Foot distinguished between the obligations to an individual which flow from Charity (what the individual ‘has a need of’) and those which flow from Justice (what the individual ‘has a right to’); she argued that obligations flowing from Justice (of which the most basic is the ‘right to be let alone’) must take precedence over obligations flowing from Charity. Individuals to whom obligations are owing from both Justice and Charity are called ‘persons’ (as such, they possess ‘rights’); I introduced the term ‘Objects of Intrinsic Moral Worth’ to describe those individuals to whom obligations are owing based only in Charity.
I have argued that the ability to communicate was a necessary condition for the ascription of 'personhood' (and by implication ‘rights’); the concept of ‘attenuated personhood' was introduced to cover those individuals for whom a possibility existed that they would at some future stage be able to communicate. Individuals with ‘attenuated personhood' lose all their rights other than their ‘right not to be killed’: strategies whose goal is the death of the patient are prohibited even if their death was deemed to be in their ‘best interests’, all other decisions are taken on a ‘best interests’ basis.
Drawing on these concepts and distinctions, it was possible to generate a new conceptual framework[xxx] to help resolve ‘end-of-life’ decisions. Applying this framework to, for example, a patient diagnosed as PVS, it follows that if the patient is believed to have permanently lost the ability to communicate then the obligation flowing from Justice cease whilst the obligations flowing from Charity persist. Accordingly all their health care decisions - including ones which had the death of the patient as their goal - are to be taken on a ‘best interests’ basis.[xxxi]
One important consequence of this method of analysis is that it shows that the making of decisions for an individual solely on the basis of what is perceived to be in their ‘best interests’ is necessarily a denial of their personhood.
The withdrawal of ANH is sui generis
The judgements in the Ward case considered the withdrawal of ANH to be a ‘medical treatment’; they did not stipulate that decisions to withdraw ANH required any safeguards additional to those appropriate to more usual medical decision-making. In this, they differed from the English courts who - though they also considered ANH to be a ‘medical treatment’ - regarded decisions to withdraw ANH as being sui generis and of such seriousness as to require the consent of the courts before being implemented.
Imagine the case of an aged patient in an old person’s home who was regarded by both her family and medical carers as an irksome, cantankerous individual who gets no enjoyment from life.[xxxii] Being difficult to feed, it is considered to be in her ‘best interests’ that tube feeding be commenced. Once this has been accomplished then the way is open for a decision that - because the patient’s quality of life is so poor - her tube feeding should be withdrawn and she be ‘allowed to die’. What would have brought forth the full rigour of the criminal law if attempted in one step - i.e. the killing of the patient - can, it seems, be easily accomplished in two. A consideration of this example shows that it is necessary to regard decisions to withdraw ANH to be of such seriousness as to require special safeguards (such as application to the courts) and moreover that they are appropriate only to certain, well defined, cases. The conceptual framework developed in this thesis allows these cases to be identified: the withdrawal of ANH is permissible only if it is believed that there is no possibility of establishing communicating with the patient either now or in the future, and then only if the withdrawal of ANH is in the ‘best interests’ of that patient.[xxxiii]
Conclusion
The ability to communicate - and not the absence of consciousness - is the key to unravelling the ethical problems associated with ‘end-of-life’ decisions in PVS and PVS-like conditions. By using the proposed definition of PVS and necessary condition for the ascription of personhood (both framed in terms of ability to communicate), the ethical problems associated with end of life decisions in relation to PVS patients can be resolved without the danger of engendering a ‘slippery slope’.[xxxiv] Furthermore, the need to distinguish between PVS and ‘near-PVS’ for ethical and legal reasons, is removed.[xxxv]
The conceptual framework proposed also helps resolve ethical problems in relation to the withdrawal of life-sustaining treatment in cases other than PVS or ‘near-PVS’. When, for example, it is applied to cases of infant disability the proposed conceptual framework has the great benefit - unlike the conceptual frameworks used at present - of distinguishing sharply between cases such as Down Syndrome and cases of anencephaly; strategies whose goal is the death of the infant being absolutely prohibited in cases such as Down Syndrome.[xxxvi]
[i] Samuel Beckett, Company, p.22.
[ii] Namely that the withdrawal of ANH was a ‘medical treatment decision’ which was to be made on an assessment of the ‘best interests’ of the patient.
[iii] As for example in the English case Re B (a minor) (wardship: medical treatment) [1990] 3 All ER 927 [see Appendix C, number 7]; this case concerned a Down Syndrome infant who required a simple operation to remove an abdominal obstruction; however, the infant’s parents believed that the operation was not in the infant’s ‘best interests’. The courts ordered that treatment be withheld, though this decision was later overturned on appeal.
The Attorney General, in his submissions to the court in the Ward case, referred to Re B and said that:
“... that case uniquely illustrates why
quality of life should not be adopted as a test.” [The Ward case, p.449]
[iv] The presence or absence of consciousness is the criterion usually advocated as enabling PVS to be distinguished from other conditions with which it may be confused.
[v] Borthwick (1995b) p.207:
“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.”
[vi] Jennett and Plum (1972) p.735.
[vii] BMA (1996) p.58:
“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.”
[viii] Because such patients had not been ‘truly’ PVS.
[ix] Jennett and Plum (1972).
[x] The existence of such a possibility was acknowledged by Jennett and Plum.
[xi] As shown by, for example, his remembering of conversations that occurred in his presence at that time of the original diagnosis.
[xii] Though with no clear indication as to what the correct diagnosis should have been (‘locked-in syndrome’ is not an appropriate diagnosis unless the patient had been, at the time of the original diagnosis, able to communicate by eye-blink and this had been overlooked ).
[xiii] See, for example, McQuillen op.cit. at p.375:
“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.”
[xiv] A tendency which has been given an added impetus by the use of the diagnosis of ‘near-PVS’ and by the recent BMA proposals that the withdrawal of ANH be permitted in cases of severe dementia and Alzheimer's Disease [see BMA (1999a)].
[xv] Borthwick, though his critical analysis is faultless, does not offer a solution.
[xvi] See Conclusion 4 -17 .
[xvii] The ‘locked-in syndrome’ is the condition with which PVS is most often confused.
[xviii] The fact that a patient, diagnosed as PVS, was conscious at the time of the diagnosis does not imply any misdiagnosis.
[xix] An erroneous determination that a patient had permanently lost the ability to communicate is, if negligently made, morally equivalent to a wrongful killing.
[xx] As is exemplified by such as Andrews who has spoken of the need for developing stimulation programmes to help evince awareness in PVS patients [Andrews (1992) p.486].
[xxi] In that the aim of both the patient’s family and his carers is to seek to establish communication with the patient.
[xxii] In that the criteria for both PVS and loss of personhood are based on an inability to communicate.
[xxiii] For example, only in recent times has it become generally accepted that animals have the ability to feel pain (Descartes, argued that they had no such ability); it is only within the last ten years that it has become generally accepted that newborn infants may feel pain; and the issue of whether a foetus can experience pain is currently a subject of controversy.
[xxiv] The belief that there are scientific grounds for asserting that PVS patients cannot experience pain is of considerable negative importance in that it is destructive of the empathy which naturally arises on seeing a PVS patients manifest pain behaviour.
[xxv] See Conclusion 5 - 5 .
The phrase ‘as if’ is used not in the sense of suggesting a pretence, but rather in the sense of suggesting that in the face of incomplete knowledge as to which PVS patients are conscious - and some undoubtedly are - all should be treated as if they were conscious. (A similar usage occurs when used hypodermic syringes are regarded as if they were contaminated - some are, we have no way of knowing which, and the consequences of making an incorrect decision are great.).
[xxvi] Young PJ, and Matta BF. ‘Anaesthesia for organ donation in the brainstem dead - why bother?’ Anaesthesia, (2000) Feb;55(2):105-6.
[xxvii] There may, however, be exceptional cases where the tube used in ANH is removed in order to alleviate the discomfort to the patient caused by its presence, even though it is recognised that the patient will die as a result of its removal. To distinguish such cases from those where the death of the patient is the goal of the tube removal: imagine a medical invention whereby nutrition could be given to a patient (by, for example, putting a patch on the arm) painless and without occasioning any discomfort; we can distinguish between both types of case by asking whether such an invention would be used in the instant case. I suggest that such an invention would not have been used in either the Ward or Bland cases thus showing that the death of the patient was the goal of the withdrawal of ANH. [As mentioned earlier - see footnote 46, Chapter 6 - in Tony Bland’s case, the tube was not, in fact, removed but was left in place in case it might be useful in administering medication.]
[xxviii] In England, an application to the courts is required before the withdrawal of ANH (although the BMA have argued that it is required only in cases of PVS).
[xxix] I have called such judgements ‘absolute quality of life judgements’.
[xxx] The ‘P-GD conceptual structure’.
[xxxi] As is argued in Chapter 11, the direct killing of such a patient may be in their ‘best interests’ in that their death would be quick and painless; however, when wider social concerns are included in the analysis, it was concluded that the withdrawal of ANH (when used as a strategy to occasion the death of a patient) was preferable to direct killing in that it carried less risk of engendering a ‘slippery slope’.
[xxxii] This example was also given in Chapter 11 where it was mentioned
that it bore some disquieting resemblances to the case Re R [Appendix C, number 11].
In Re R a court application to
permit the withdrawal of syringe feeding was withdrawn in favour of an
application to permit the commencement
of tube feeding on the understanding that a subsequent application might be
made to seek its discontinuance, if this was regarded as being in R’s ‘best interests’. In similar circumstances under Irish law, it
appears that there would be no necessity to seek the permission of the court
for any of the proposed interventions.
[xxxiii] Though see the proviso in footnote 27 supra.
[xxxiv] As applied to the facts of the Ward case, the proposed conceptual structure would imply precisely the same conclusion as was in fact arrived at in that case.
[xxxv] In that both PVS and ‘near-PVS’ patients are treated as being conscious and, accordingly, as individuals to whom obligation are due based on Charity. There will, of course, still be medical reasons for distinguishing between these conditions.
[xxxvi] Such infants - because there is a possibility that they will be able to communicate at some future stage - have an ‘attenuated personhood'; as such, no procedure whose goal is the death of the infant is permitted even if it is believed to be in the infant’s ‘best interests’.