Chapter 7

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 7: The concept of ‘quality of life’

The concept of ‘quality of life’ is widely used in medical decision-making to facilitate comparison between different medical treatment options; it has also been used by the courts in the legal analysis of decisions concerning the giving, or withholding, of medical treatment from incompetent patients (that is, patients who lack the capacity to consent). This chapter analyses the concept with particular reference to situations where medical treatment is withdrawn from patients whose death is the foreseeable result of such a withdrawal. Two types of quality of life judgements are distinguished: ‘incremental quality of life’ judgements - which seek to estimate the difference, or increment, that a medical intervention will make to the quality of life of a patient - and ‘absolute quality of life’ judgements - which seek to give a global, or absolute, measure of the quality of life of a patient at a particular moment in time. It is proposed that, on ethical grounds, ‘absolute quality of life’ judgements should be avoided; this however, does not affect the use of ‘incremental quality of life’ judgements because - as is shown -‘incremental quality of life’ judgements do not logically depend on the ability to make prior ‘absolute quality of life’ judgements. Thus, the suggested prohibition does not affect the use of quality of life judgements as normally encountered in clinical medicine, as these are ‘incremental’ rather than ‘absolute quality of life’ judgements. It is also argued that the concept of ‘best interests’ as used in the Ward and Bland cases,[i] necessitates the making of ‘absolute quality of life’ judgements and that the danger of a 'slippery slope' being occasioned by the Ward and Bland decisions, is due primarily to their reliance on ‘absolute quality of life’ judgements.

This chapter is divided into four Sections. Section 1 considers the concept of ‘quality of life’. Section 2 introduces the distinction between ‘absolute’ and ‘incremental quality of life judgements’ and discusses the relationship between them. Section 3 analyses the relationship between the concepts of ‘best interests’ and ‘quality of life’; it also considers the meaning of the term ‘best interests’ as used in the Ward and Bland cases. Section 4 draws some conclusions from the discussion.

Section 1: The concept of ‘quality of life’.

James F. Drane in his Clinical Bioethics suggests[ii] that the concept of ‘quality of life’ evolved in medicine to help bridge the gap between scientific medicine - with its preoccupation with objective diseases and their cure - and the lives of individual patients with their own particular experiences and value systems. The need for such a concept arose from a recognition that the same medical intervention performed on individuals with different life styles and values could have radically different effects on the lives of these individuals; it might be beneficial in some cases but harmful in others. The Hippocratic admonition that a physician ‘Do no harm’ does not mean ‘harm’ in some abstract sense but in relation to the individual patient; it requires an assessment of whether a proposed intervention - even though usually beneficial - will in fact benefit the particular individual patient. In an attempt to formulate this problem more clearly, medical interventions have been considered to affect a patient in two ways, they can affect his actual life span (the quantity of his life or, as usually described, his life expectancy) or his capacity to enjoy his life (the quality of his life).

In scientific medicine, as in all scientific investigations, the primary goal is to quantify in order that decisions and comparisons can be more readily made. The ‘quantity of life’ is by its very nature quantified: a proposed intervention will increase or lessen the individual patient’s life by ‘x’ years. However, the ‘quality of life’ is a more elusive concept. Before any attempt at quantification can be made it is necessary to clarify the meaning of the term ‘quality of life’ though some commentators[iii] believe that this problem has usually been resolved in the reverse order, that is by prioritising the quantification - this being easier to resolve - over attempts to clarify that which is supposedly being quantified.

To attempt to discuss the various definitions of quality of life would lead us too far afield. Suffice to say that not only is there no consensus amongst academic commentators in the medical journals, as to the definition of ‘quality of life’ - indeed, the possible measures of ‘quality of life’ are numbered in the hundreds, each, presumably, with its own definition; but there is considerable dispute as to its usefulness, i.e. as to whether it helps to add clarity to discussions of a difficult topic or whether its actual function is to add a veneer of objectivity to what is in fact a subjective judgement, thus functioning as a mask and obfuscating discussion. For example, a BMA report states:

“Terms such as ‘quality of life’ are problematic because of the pejorative implication they may convey that some lives are less valued. Assessments of ‘quality’ are inevitably value laden and subjective. Even if we resist the terms, however, the concept underlies much of the discussion and decision-making at the end of life.” [iv]

Edlund and Tancredi in an article entitled ‘Quality of Life: an Ideological Critique’ also suggest that the term is ill defined:

“The very nebulous nature of the phrase ‘quality of life’, the lack of serious attention to what it means, and the extraordinary variety of definitions it may include make it susceptible to that characterisation most beneficial to the individual decision maker ... Decision makers will shift their ideology of quality of life to suit their interests.” [v]

Lest it be thought that this criticism might be dated, a recent article published in the Journal of the American Medical Association is considerably more hard hitting:

“... a clear conceptual basis for quality-of-life measures is lacking, and the few attempts to develop models or operational definitions of quality of life have been woefully inadequate. ... We thus infer quality of life from a variety of indicators, many of which tell us something about life but nothing about quality. The consequence of this confusion is that it is often impossible to know exactly what is being measured ... ” [vi]

These quotations show that even within medical circles, there is considerable dispute as to the usefulness - and indeed the meaning - of the concept ‘quality of life’. Nonetheless it is a widely used concept in medicine and it plays a crucial, albeit implicit, role in the judgements in both the Ward and Bland cases[vii] - the notable exception being Lord Mustill’s judgement in the Bland Case where he suggested that the use of the concept of ‘quality of life’ was the “ ... the first step on a very dangerous road indeed ... ” [viii]

Conclusion _{7
- 1} : The concept of ‘quality of life’ is much used in medicine and law to enable the comparison of different treatment options. The concept is not well defined and its claim to rigor and objectivity is largely spurious.

As stated earlier, the term ‘quality of life’ is used in everyday clinical medicine as an aid in considering whether medical treatment should or should not be given to a particular patient.[ix] The criterion being that if the proposed treatment does not enhance the 'quality of life' of the patient, it should not be given.[x] However, in applying the term to decisions relating to the continuation of life-sustaining treatment a subtle change occurs; here the principle is interpreted as implying that if the 'quality of life' is adjudged to be so poor as to be practically non-existent, and if medical treatment could not alter this situation, then life-sustaining medical treatment should be not given, or if being currently given, should be withdrawn. This usage possibly originated from attempts to assimilate the methodology used in making treatment decisions for terminally ill patients, into a ‘quality of life’ framework whereas - as will be argued in Part 3 - an alternative framework is required.

The courts followed this reinterpretation and used the concept of ‘quality of life’ as a decision-making tool: the judgement that the overall ‘quality of life' of a patient was nil,[xi] or at least minimal, being sufficient to trigger the decision to withdraw treatment including ANH. The judgement of Taylor LJ, in the In re J( a minor) is a good example of such a usage:

“I consider that the correct approach is for the court to judge the quality of life the child would have to endure if given the treatment and decide whether in all the circumstances such a life would be so afflicted as to be intolerable to that child.” [xii]

One of the main contentions of this chapter is that this use of the term ‘quality of life’ is quite distinct from it use in everyday clinical settings and that the distinction between the two uses is of considerable ethical importance. We now examine the proposed distinction.

Section 2: The distinction between ‘incremental quality of life’ and ‘absolute quality of life’.

The distinction between ‘incremental quality of life’ judgements and ‘absolute quality of life’ judgements is explained in Subsection 1; examples of both types of judgements are given. The argument that ‘incremental quality of life’ judgements do not require the ability to make a prior ‘absolute quality of life’ judgement is set out in Subsection 2. The ethical grounds for arguing that ‘absolute quality of life’ judgements be impermissible are set out in Subsection 3.

Subsection 1: The distinction between ‘incremental quality of life’ and ‘absolute quality of life’ judgements.

In an effort to remove some of the ambiguity associated with the concept of ‘quality of life judgements’ two meanings will be distinguished; they are ‘incremental quality of life’ judgements and ‘absolute quality of life’ judgements.

‘Incremental quality of life’ judgements

Consider a proposed medical intervention on a particular patient - one of those normal everyday medical interventions, the very routine of any hospital; if one’s purpose is to assess whether this intervention should be performed then it is necessary to judge whether it would improve the patient’s quality of life; if it did so improve his quality of life it should be performed, otherwise not. In other words, the clinician is required to determine the increment, or change - either positive or negative - which is expected to occur in the quality of life of a patient as a consequence of a proposed medical intervention. The intervention should be performed if and only if this increment is positive. [xiii] This would be in accord with the injunction to physicians often attributed to Hippocrates, ‘to help, or at least to do no harm.’ [xiv] I use the term ‘incremental quality of life judgements’ to describe such judgements.

‘Absolute quality of life’ judgements

The concept of ‘absolute quality of life’ relates to attempts to measure of the total quality of life of a patient and adjudge that in certain cases the quality of life is so poor that they would, in everyday language, ‘be better off dead’. Such an index or measure may be quite primitive - such as 'good', 'poor', or 'non-existent' - or may attempt a greater sophistication, but irrespective of its complexity it reduces 'quality of life' to a linear scale by means of which comparisons can be made. I use the term ‘absolute quality of life judgements’ to describe judgements made with the use of such indices. An example of the legal use of an ‘absolute quality of life’ measure is found in the test proposed by Lord Justice Taylor in the ‘In re J’ case (quoted in the previous section): “... whether in all the circumstances such a life would be so afflicted as to be intolerable to that child.”

Conclusion _{7 - 2} : ‘Incremental quality of life’ judgements are quality of life judgements which seek to estimate the change in the quality of life of a patient ascribable to a proposed medical intervention; the understanding being that the intervention should be performed if and only if this change is positive. [xv]

‘Absolute quality of life’ judgements are quality of life judgements which seek to estimate the total quality of life of a patient; the understanding being that if this quality of life is minimal then life-sustaining medical treatment should be withheld and the patients allowed to die.

Examples showing the differing uses of the term ‘quality of life’.[xvi]

The Ward and Bland Cases [xvii]

The Bland and Ward Cases justified the withdrawal of ANH[xviii] mainly on the grounds of it being in the patient’s ‘best interests’. The relationship between ‘best interests’ and ‘quality of life’ judgements is considered in Section 3 and it is there argued that ‘best interests’ judgements as used in the Ward and Bland cases, are logically equivalent to ‘absolute quality of life’ judgements.

Frenchay v S [xix]

In this case there was a conflict of evidence relating to the patient’s ‘quality of life’. The patient’s neuropsychiatrist gave evidence that the patient’s quality of life was nil; however, the expert in rehabilitative medicine disagreed and believed that there were respects in which his quality of life could be improved. She argued that this could be achieved by, for example, a reduction of the amount of sedation and by the use of a chair which would better ensure the patient’s comfort.

It is clear that that the neuropsychiatrist was using the term ‘quality of life’ in the sense of ‘absolute quality of life’ whereas the consultant of rehabilitative medicine was using it in the sense of ‘incremental quality of life’ - thus emphasising the need to distinguish between these meanings and showing that what was interpreted in the judgement as a conflict of evidence, was in reality not so.

Re B [xx]

This case concerned a Down Syndrome infant with an intestinal blockage which was removable by a simple operation; the child’s parents refused consent to an operation arguing that even if the operation was successful, the infant would have a minimal quality of life.

It is clear that the distinction between ‘incremental quality of life’ and ‘absolute quality of life’ is crucial to the problem at the heart of this case. The parent’s position was that the ‘absolute quality of life’ of the infant was minimal and accordingly that the operation should not be performed but it is equally clear that the operation would improve the ‘incremental quality of life’ of the infant.

If improvement in ‘incremental quality of life’ is accepted as the appropriate criterion for treatment decisions then it is clear that the operation should be performed.

Precisely the same distinction is at the heart of the Canadian case Re Superintendent Of Family [xxi] and the English case Re T. [xxii]

Re R [xxiii]

R was seriously disabled and in ‘a low awareness state’. His medical consultants were of the view that his quality of life was ‘unacceptable’ and that a DNR order[xxiv] was appropriate; this was contested by the carers at the day centre which the patient attended. It is clear that the consultant’s judgement was an ‘absolute quality of life’ judgement; the carers disagreed with this absolute quality of life judgement, but in their objection there were elements of an ‘incremental quality of life’ judgement in that they believed that their daily interactions with the patient gave him pleasure and that they could comfort him.

The court considered the evidence of Dr Andrews as crucial to its decision. His evidence concerned the likelihood of ventilation being successful; his view was that this was most unlikely and that attempts at ventilation might cause the patient either further brain damage or broken ribs.

The court’s decision in allowing the DNR order to stand could thus be categorised as being based on an ‘incremental quality of life’ judgement - the intervention itself would not necessarily improve the patient’s quality of life. However, the BMA note on this decision [xxv] interprets it in a much broader sense as validating ‘absolute quality of life’ judgements; in so far as the court also ordered that R be operated on to permit gastrostomy tube feeding, the BMA interpretation seems too sweeping; although it could be argued that it is a consequence of the ‘twin track’ approach adopted by the English courts whereby the criteria justifying withdrawal of ANH are different from those justifying the withdrawal of other types of treatment.

Cases of terminal illness

It was mentioned earlier that ‘absolute quality of life’ judgements may well have originated from attempts to assimilate the methodology used in making treatment decisions for terminally ill patients into a ‘quality of life’ framework.

These treatment decisions for terminally ill patients are of two types:

A. The first type are those where the treatment can be justified in terms of improving a patient’s ‘incremental quality of life’, even though the patient’s life is shortened as a (possibly desired) side effect. [xxvi] These are the treatment decisions spoken of by Lord Donaldson in Re J [xxvii] when he stated that the question that doctors have to decide is whether:

“ ... a particular decision as to medical treatment should be taken which as a side effect will render death more or less likely. This is not a matter of semantics it is fundamental. ... the use of drugs to reduce pain will often be fully justified, notwithstanding that they will hasten the moment of death.” [xxviii]

This is an example of the classic double effect argument; however, when cast into the language of incremental and absolute quality of life judgements, a new dimension is revealed. In suggesting that painkillers should be given to the terminally ill even at the risk of shortening their lives Lord Donaldson was emphasising that giving of the pain killer itself required a justification, which was that it reduced pain and thus improved the patient’s ‘incremental quality of life’; there is no ‘absolute quality of life’ judgement involved here. [xxix]

B. This contrasts with the second type of treatment decisions which do not, and are not calculated to, improve the patients ‘incremental quality of life’ but are designed to allow him to die.[xxx] These are justified on grounds either of futility or that they serve the patient’s ‘best interests’ in that the patient is dying. It is clear that such judgements are ‘absolute quality of life’ judgements. The double effect argument is often employed in such circumstances to justify the withdrawal of treatment, and in so far as there are no ‘incremental quality of life’ benefits it is clear that such applications are invalid.

The conclusion that ‘absolute quality of life’ judgements should be avoided on ethical grounds would imply that treatment decisions for the terminally ill, which are of the second type should also be avoided. The concept of ‘a good death’ - which is discussed in Chapter 9 - would permit these cases to be resolved without the necessity of relying on ‘absolute quality of life’ judgements.

Conclusion _{7 - 3} : ‘Absolute quality of life’ judgements have been used by the courts to justify the withdrawal of life-sustaining treatment in two types of cases:

(i) in cases non-terminal illness.

(ii) in cases of terminal illness.

It is argued in Part 3 that the conceptual scheme there proposed would (by using the concept of ‘a good death’) permit an appropriate resolution to all type (ii) cases; and furthermore, would (by using the concept of personhood) allow some[xxxi] of the type (i) cases to be resolved; it would not justify the withdrawal of life-sustaining treatment in other cases of type (i)[xxxii] such as, for example, cases of Down Syndrome.

Subsection 2: ‘Incremental quality of life’ judgements do not depend on an ability to make ‘absolute quality of life’ judgements.

Obviously if ‘absolute quality of life’ judgements are possible - and ethically permissible - then a clinician could make an ‘incremental quality of life judgement’ simply by making an ‘absolute quality of life judgement ’ for the circumstances that pertain before the intervention, and again for those circumstances which he believes will exist after the proposed intervention; the ‘incremental quality of life’ being nothing more that the difference between the ‘absolute quality of life’ after the proposed intervention and that before it.

However, - and most importantly - the ability to make ‘incremental quality of life’ judgements does not depend on an ability to make ‘absolute quality of life’ judgements. The fact that this is so allows one to accept the validity of ‘incremental quality of life’ judgements whilst denying the validity of ‘absolute quality of life’ judgements. If this was not so the attempted distinction between ‘absolute quality of life’ and ‘incremental quality of life’ would be of no interest.

I am not suggesting that the concept of ‘absolute quality of life’ is not relevant to the concept of ‘incremental quality of life’; still less am I suggesting that the concept of ‘incremental quality of life’ is logically independent of that of ‘absolute quality of life’; what I am suggesting is that changes in ‘absolute quality of life’ can be measured even though it itself either cannot or, for ethical reasons, should not be measured as a totality. An analogy explains the point clearly: imagine choosing a gift for a friend; one estimates which particular gift would give them the greatest happiness, one examines whether a particular gift would tend to increase or decrease their quantum of happiness and one chooses that which maximises the incremental increase; attempts to estimate their total quantum of happiness are neither necessary nor desirable. Some very simple visual examples can also clarify the operative principle and obviate the necessity for an exhaustive verbal explanation though a verbal argument will be subsequently be sketched.

Example 1

Imagine a glass of water ‘A‘ from which some water is removed by evaporation, leaving the glass as at ‘B’ in Diagram 7-1. If one wished to determine the amount of water removed then one could certainly measure the amount of water at ‘A’, then measure the amount of water at ‘B’ and then subtract these figures. This is illustrated below in Diagram 7-1: Case 1.

If, however, one was unable to measure the total quantities in the glasses - imagine that a piece of card was placed in front of the glasses so that the total quantity was not determinable - then it would still be possible to determine the amount removed by comparing the levels both before, and after, the operation. So that - if one was sure that the only change was that by evaporation - one could determine the amount evaporated. This is the situation illustrated below in Diagram 7-1: Case 2.

Case 1





	A		B

Case 2




	*CARD*
A		B

Diagram 7-1: Example showing alternative methods of measuring change.

Example 2

The problem is to measure the population increase of some country between 1990 and 2000. Certainly, the population increase could be determined by measuring the total population in 1990 and again in 2000 and then subtracting these results. However, in the absence of such information the population increase could also be determined simply by noting the changes that have occurred - i.e. the births less the deaths (assuming that these were the only changes). This is illustrated in Diagram 7-2 below.

		*Increment in population*

~ ~		~ ~

Population in 1990		Population in 2000

Diagram 7-2: Example showing measurement of a population change.

These examples show that it is possible to measure the incremental changes of a quantity without necessarily being able to measure the total quantity.

Returning to the original discussion, it is clear that a physician can judge whether (within the context of the life of a particular patient and judged from that patient’s perspective) a proposed medical intervention will have a positive or negative effect on the quality of life of that patient, whilst at the same time fully accepting that he, the physician, is utterly unable to assess the 'quality of life' - in the sense of ‘absolute quality of life’ - of that patient; so that ‘incremental quality of life’ judgements do not depend on the ability to make ‘absolute quality of life’ judgements.

Conclusion _{7
- 4} : A physician can judge how a proposed medical intervention will impact on the quality of life of a patient - i.e. he can make an ‘incremental quality of life’ judgement - without needing to make any assessment as to the total quality of life of the patient - i.e. without making an ‘absolute quality of life’ judgement.

‘Incremental quality of life’ judgements do not require an ability to measure but only to rank

It may be objected that these examples above do not provide true analogies for the discussion about ‘quality of life’ because, in the examples, there is no difficulty with measuring as such: there is no dispute that in the examples given cubic centimetres or individual citizens are the appropriate unit; whereas in discussing ‘quality of life’, not only is there a problem with measuring ‘quality of life’ in its totality but there is a difficulty with the very idea of measuring ‘quality of life’ at all. This objection can be overcome by noticing that what is required in deciding whether a medical intervention should proceed is strictly not a measure of ‘incremental quality of life’ but a ranking [xxxiii] of the 'quality of life' before the intervention, against that after the intervention. Logically, if measuring is possible, one can certainly define ranking in terms of measure, however, the corollary does not follow; one can logically speak of ranking even though measuring is not possible, 'ranking' being a logically more primitive concept than measuring. Thus, it follows that even if measuring is not possible ranking may still be. Furthermore, ‘incremental ranking’ does not depend on ‘absolute ranking’, as can be seen through a consideration of some examples where there is no suggestion that quantification is possible: consider a proposed change in a musical arrangement or in a painting; one could meaningfully ask whether the change would make the piece better or worse, more or less beautiful; such is an ‘incremental’ quality judgement and is quite distinct from the independent question as to whether the piece of music or art, considered in absolute terms, is a good piece of art, this latter being an ‘absolute’ quality judgement.

Finally, the ethical objection spoken of earlier against making ‘absolute quality of life’ judgements is, strictly speaking, not directed against attempts to measure the ‘absolute quality of life’ of an individual but against attempts to use that measure for purposes other than the making of incremental quality of life judgements. Thus, the objection that if one is prohibited from measuring ‘absolute quality of life’, one cannot measure ‘quality of life’ at all and, a fortiori, one cannot measure ‘incremental quality of life’, is quite beside the point.

Subsection 3: ‘Absolute quality of life’ judgements should be avoided.

The argument against the use of ‘absolute quality of life’ judgements is based on two grounds; firstly, that such judgements conflict with egalitarian principles, secondly, that they are unreliable.

‘Absolute quality of life’ judgements conflict with egalitarian principles.

In attempting to clarify the decision making process in respect of the giving or withholding of medical treatment, the life of a patient is often described in terms of its quality and its quantity; however, the idea that a human life can be encapsulated in such terms can be a profoundly inegalitarian one.

If quantity of life is equivalent to length of life, then the statement that persons’ lives differ in their quantity cannot be disputed. However, if it is conceded that person’s lives also differ in their quality, and that this difference can be measured, so that it is possible to state of two persons which has the better 'quality of life', then it is difficult to avoid the conclusion that such lives differ in their worth. Consider two persons with an equal life-expectancy whose lives differ only in that one is judged to have a 'poor quality of life' and the other a 'good quality of life'; if the value of their lives can be wholly encapsulated in such judgements,[xxxiv] then would it not follow that it was a lesser evil to kill the one with the 'poor quality of life' than the one with the ‘good quality of life' or that it was a good to kill the former in order to save the latter? [xxxv] This was the argument of Lord Mustill in the Bland case, when he rejected the suggestion that the ‘quality of a life is diminished by disease or incapacity because it would imply that “... one life is intrinsically worth less than another.” [xxxvi] It was also the argument of the Irish Attorney General when, in the Ward case, he submitted that if the State were ever to take ‘quality of life’ considerations into account then this would imply that it need provide less protection for the most disadvantaged or most vulnerable of its citizens - the very citizens who had most need of its protection.[xxxvii] Mr Justice Egan in his dissenting judgement in the Ward case shared these views:

“Cognition in a human being is something which is either present or absent ... Any effort to measure its value would be dangerous.” [xxxviii]

To avoid these conclusions it seems necessary to allow that the quality of a person’s life is, in a deep private sense, immeasurable; that between lives, quality is equal - ‘equality’ after all means the possession of a like degree of quality - and that this equality flows from their incommensurability rather than from any equality of measure. It is this perception that is manifested in the suggested prohibition on ‘absolute quality of life’ judgements.

The recognition that the 'quality of life' of another person is opaque to us at its deeper levels[xxxix] does not preclude the use of the term as an aid in deciding on an appropriate intervention. After all we share a common humanity and an awareness of what is likely to be of assistance to another. If the attempt to assist is done, not in a paternalistic sense of acting to ‘better’ or ‘do good to’ another, but rather from a sense of empathy[xl] - by entering as far as possible into their world view and, from that perspective, assisting - then it could indeed be said to improve their ‘quality of life’ but such a usage of the term is clearly in the sense of ‘incremental quality of life’ rather than in that of ‘absolute quality of life’ .

‘Absolute quality of life’ judgements are unreliable [xli]

I wish to offer two examples which, I suggest, make abundantly clear the radical difference that can exist between the perception of 'quality of life' as judged from within, and as judged from without.

Jean-Dominique Bauby

In 1995 Jean-Dominique Bauby, who was the editor of a French fashion magazine, suffered a severe stroke and became a victim of ‘Locked-In Syndrome’[xlii]; he was able to move only his left eyelid. His situation was surely such that any dispassionate observer would have judged his 'quality of life' as non-existent, yet he dictated a book The Diving Suit and the Butterfly[xliii] by communicating by signalling with his eyelid. Bauby accomplished this heroic feat by blinking - once for ‘yes’, two for ‘no’ - in response to a friend holding up cards on which the letters of the alphabet had been written; thus was the book written - letter by laborious letter. In 1996 Bauby established the French society for patients suffering from locked-in syndrome.[xliv] He died in 1997.

After his accident some of Bauby’s former acquaintances had described him as a ‘vegetable’; he had been told of this and wrote the book partly in response. Shortly after the accident he described his appearance:

"Reflected in the glass I saw the head of a man who seemed to have emerged from a vat of formaldehyde. His mouth was twisted, his nose damaged, his hair tousled, his gaze full of fear. One eye was sewn shut, the other goggled like the doomed eye of Cain. For a moment, I stared at that dilated pupil before I realised it was only mine." [xlv]

But, if his body was trapped in the diving suit of the book's title,[xlvi] his mind would take flight like a butterfly:

"My cocoon becomes less oppressive and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court. You can visit the woman you love, slide down beside her and stroke her still sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realise your childhood dreams and adult ambitions. Enough rambling. My main task now is to compose the first of these bedridden travel notes ...” [xlvii]

The friend to whom he dictated the book has said:

“He did not want to die. He had so many plans. He wanted to write another book and set up an association for people like himself. You cannot say he had nothing to live for. He loved life more than most able-bodied people.” [xlviii]

Bauby, speaking of his attitude to withdrawal of life-sustaining treatment, had said:

"When the neurologist asked did I regret that I had been resuscitated, tell him that I don't think like that anymore but that I'm glad that he asked the question." [xlix]

Viktor Frankl

Viktor Frankl was a survivor of the Nazi concentration camps who later became a noted psychotherapist and author. His reflections on how people managed to survive and to find a certain dignity in situations such as Auschwitz - which to the outsider seemed of appalling grotesqueness - were published in his book Man's Search for Meaning.[l] This book emphasised the uniqueness of each human being and in it he used his own experience of the concentration camps to show how meaning could be found in even the most appalling situations, so helping people to come to terms with suffering whatever its causes. He acknowledged that in many cases it took a degree of unscrupulousness to survive the degrading conditions of these camps but he was nonetheless strikingly impressed by the inner freedom created by the condition of possessing nothing:

“I understood how a man who has nothing left in the world may still know bliss.” [li]

____________

In summary, ‘absolute quality of life’ judgements are incompatible with the egalitarian principle that all persons be treated as equal. [lii] The existence of great disparities between ‘absolute quality of life’ judgements made from within a life and from outside that life is a further reason for avoiding their use. However, it might be objected that, no matter how persuasive these individual examples might be, they may well be the exception; and that normally the judgement of a life from within and from without are reasonably congruent. Such an objection is undoubtedly valid but the appropriate response is not to assume that such a congruence is the norm, but to attempt to determine the frequency of such disparities in a rigorous scientific fashion. Such a study, although not possible in the context in which 'absolute quality of life' judgements would normally be used - that is in regard to a patient without the capacity to describe their own 'quality of life' - is certainly possible in a wider social context. Such a study could attempt to assess a wide variety of subjects as to their 'quality of life' judging only from the exterior circumstances of their lives; discussion with family and friends of the subject being permitted but not discussion with the subject themselves. A subsequent investigation of the subjects own assessment of their own 'quality of life' would yield data which would permit an informed comparison of these two assessments, and in consequence a judgement of the frequency of disparities. In this regard a recent American study[liii] which found only a modest correlation between health values and quality of life is of interest, as a high correlation had usually been assumed. This study had questioned elderly American patients and found that, given the choice, they preferred to live as long as possible in the state of health they were actually in, rather than to live a shorter life but in better health.

More importantly however, valuable information could be found by questioning those patients who have recovered from a PVS. The apparent unwillingness to look for such information - as is evidenced by the lack of research in this area - would seem to suggest that although the language of subjective 'quality of life' is commonly used, it serves to mask different interests. Unfortunately the insistence by the BMA that recovery from PVS is itself evidence of misdiagnosis[liv] effectively precludes if not the carrying out of such studies, at least their relevance; this is because if recovered ‘PVS’ patients cannot, logically, have been PVS, then their views as to their experience whilst supposedly PVS is of no relevance to patients who are PVS.

One further point needs to be addressed: that ‘absolute quality of life’ judgements can function as a mechanism of denial so that situations which the observer/decision-maker themselves find intolerable are not permitted to continue. An example of such denial is found in the response (quoted earlier) of a medical witness in the Karen Quinlan case, to the suggestion that Karen might be conscious:

“ ... it’s theoretically possible, in terms of animal experiments. ... 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.” [lv]

The existence of, and the role played by, denial in medical attitudes to death and dying is examined in Chapter 9 where the pioneering work of Ernest Becker and Elisabeth Kòbler-Ross in this area is also discussed.

Conclusion _{7
- 5} :There are at least two reasons why ‘absolute quality of life’ judgements should be rejected: they are unreliable and they are incompatible with the egalitarian principle that all persons be treated as equal.[lvi] Furthermore ‘absolute quality of life’ judgements often function as a mechanism of denial so that situations which are unacceptable to the decision-maker are not permitted to continue.

Section 3: The concepts of ‘best interests’.

This Section is divided into two Subsections; Subsection 1 examines the concept of ‘best interests’ from a general perspective and Subsection 2 considers the meaning to be attributed to the term ‘best interests’ as used in the Ward and Bland judgements.

Subsection 1 : The concept of ‘best interests’

The term ‘best interests’ is commonly used in discussing the medical treatment options for children and incompetent adults. Speaking of the usefulness of the term, a BMA report is less than fulsome in its praise:

“ ‘Best interests’ presents an apparently reassuring standard by which decisions should be made but can be interpreted in many ways. ... In the past, ‘best interests’ were often seen as synonymous with the most positive clinical outcome. Prolongation of life at almost any cost was seen to be in the patient's interests. ... The Law Commission's analysis of ‘best interests’ mentions the importance of taking into account the known wishes of the patient and clearly these must figure in any assessment. Frequently, however, the former wishes or values are unknown and relatives' recollections may be unreliable and so more objective standards must be considered.” [lvii]

What is this ‘more objective standard’? To say to a patient’s medical carers that the criterion that they must use in making treatment decisions for that patient is the patient’s ‘best interests’, is to place two obligations on them; these obligations must be disentangled, they are:

(i) The carers must look only to that patient’s interest when making their decision. This means that the medical carer’s interests or the interests of other patients (as manifested through scarcity of resources) or the interests of the patient’s family (in so far as these do not - as they seldom will - fully coincide with the patient’s interests) must be disregarded.[lviii]

(ii) Given then that only the patient’s interests are to be considered, they must act only in his ‘best interests’.

How is a decision to be made between two conflicting courses of action both of which, it is contended, are in the patients ‘best interests’? It was to resolve this very question that the concept of ‘quality of life’ was devised. Thus, an analysis of ‘best interests’ leads to the concept of ‘quality of life’. There is, however, no reason why a ‘best interests’ judgement must be an ‘absolute quality of life’ judgement; a ‘best interests’ judgement may well be an ‘incremental quality of life’ judgement though - as is argued in the following subsection - ‘best interests’ was used in the Ward and Bland cases, in the sense of an ‘absolute quality of life’ judgement.

Conclusion _{7
- 6} : ‘Best interests’ judgements necessitate ‘quality of life’ judgements.

As will be seen in the next subsection some judges in the Bland case, whilst accepting the ‘best interests’ test, did not accept that the concept of ‘quality of life’ could also be used. The reasons for this apparent contradiction are to do with a confusion between ‘incremental quality of life’ and ‘absolute quality of life’; however, it is worth pointing out at this stage that much of the appeal of the concept of ‘best interests’ is due to its vague definition; to its being ‘all things to all men’; as such there is a danger that it may function as an umbrella term providing shelter to other, unstated, interests; this is especially so if ‘denial’ is operative.[lix]

Subsection 2 :‘Best interests’ as used in the Ward and Bland judgements.

Two events happened to the Ward and to Tony Bland subsequent to the decision to withdraw ANH; the tube feeding was discontinued and they died. These events were intimately connected, so intimately connected that it may seem pedantic to ask which of the two events was in mind when it was decreed to be in each of their ‘best interests’ that the tube feeding be discontinued; however, if honesty and clarity be the goal of this debate then it is important that the question be at least addressed.

In an earlier chapter[lx] the distinction between direct and indirect intention (and the related doctrine of ‘double-effect’) were discussed and a test (proposed by R. A. Duff [lxi]) was suggested for determining which of a number of consequences of an action could rightly be called the goal or the intended consequence of the action; the legal position on indirectly intended acts was also clarified: this is that if action A is performed in the hope that result R₁ would occur but in the knowledge that the occurrence of R₁necessarily entails the occurrence of R₂, then R₂ is also intended.[lxii]

It has often been suggested that the double-effect argument is pure sophistry; nothing other than an intellectual device to permit the avoidance of responsibility.[lxiii] I suggest that Duff’s questions (What is the goal of the action? What is the criterion of success?) in conjunction with a thought experiment (where the consequences are imagined to be not necessarily connected) can permit a traditional double-effect analysis a further level of elucidation - the question can be asked as to which of the (now separated) consequences would be the criterion of success; the answer to this question identifies the goal of the original procedure.

As an example, consider a woman with an ectopic pregnancy; the current medical treatment is such that the procedure undertaken to protect the life of the mother necessarily results in the death of the foetus. A traditional double-effect analysis is that the killing of the foetus, though foreseen as a necessary consequence, was not the intended consequence of the procedure. A critic of the double-effect analysis will argue that since the death of the foetus was a necessary consequence, it was therefore intended and to suggest otherwise is disingenuous. Imagine, however, a medical advance which permitted the doctor to save the life of the mother without losing the life of the foetus; by posing the question as to whether the surgeon would use the current method or the imagined method, we can quickly identify the true goal of the procedure and see whether it is to save the life of the mother or to kill the foetus. The conclusion in such a case is clearly that the goal of the procedure is not the killing of the foetus.

Let us now apply the same reasoning to the withdrawal of tube feeding from a PVS patients; let us imagine that a new procedure has been invented whereby a patch placed on the arm of a patient allows their nutrition to be absorbed painlessly and effortlessly through the skin. Would such a patch have been used in the Ward and Bland cases? To do so would permit the tube feeding to be discontinued and the patient to live.

It is certainly true that in the Ward case the discomfort which the tube feeding caused was alluded to in many of the judgements; the withdrawal of tube feeding would have been justified on such grounds and the ensuing death recognised as an inevitable but unwanted side-effect. Such a judgement is eminently defensible and would have been an ‘incremental quality of life’ judgement; the fact that the patient would be in a less troubled state after that tube was removed, amply vindicates the procedure. But such was not the situation in the Bland case simply because none of the judges believed that Tony Bland could feel pain; in fact, as subsequently emerged, the tube was not disconnected but was left in place in case it was necessary to administer medication.[lxiv] Thus, Tony Bland had no better quality of life immediately after the cessation of tube feeding than before so no ‘incremental quality of life’ judgement was involved. In the Ward case we have seen that the cessation of tube feeding could have been justified as an ‘incremental quality of life’ judgement. Imagine now the nutrition patch of which we spoke earlier, being introduced into the debate; would it be seized on as the obvious solution? When O’Flaherty J., stated:

“The ward may be alive but she has no life at all. ... the quality of the ward’s life was never in issue; she is not living a life in any meaningful sense.” [lxv]

would the nutrition patch have allayed his concerns? The answer is an obvious and emphatic no.

The conclusion is that though in the Ward case there may have been ‘incremental quality of life’ grounds for the withdraw of ANH, these were secondary. We have shown that the Ward and Bland cases adopted primarily a ‘best interests’ analysis;[lxvi] we have also shown that a ‘best interests’ analysis necessitates a ‘quality of life’ analysis and we have shown that the ‘quality of life’ analysis implicit in the Ward and Bland cases was primarily one based on ‘absolute quality of life’ judgements.[lxvii]

Conclusion _{7
- 7} : The ‘best interests’ analysis adopted in both the Ward and Bland cases necessitates the use of ‘absolute quality of life’ judgements.

Section 4: Conclusions.

The conclusion of the chapter is that two meanings of the term ‘quality of life’ can be distinguished: ‘incremental quality of life’ (a measure of the change in ‘quality of life’ due to a proposed intervention) and ‘absolute quality of life’ (a measure of the totality of ‘quality of life’). It has been shown that ‘incremental quality of life’ judgements do not presume an ability to make ‘absolute quality of life’ judgements. It has been argued that ‘absolute quality of life’ judgements should be avoided because they are unreliable and because they conflict with accepted norms of equality; no such objections were made against the use of ‘incremental quality of life’ judgements. It has been shown that the concept of ‘best interests’ is dependant on that of ‘quality of life’; and that ‘best interests’ judgements as used in the Ward and Bland cases were primarily ‘absolute quality of life’ judgements; the deaths of the Ward and of Tony Bland being not only the legally intended result but the very goal of the withdrawal of ANH.

A statement by Lord Goff in the Bland case brings the questions discussed in the chapter into sharp focus; having noted that the question before the court can sometimes be put in ‘striking or emotional terms, which can be misleading’, [lxviii] he continued:

“The question is not whether the doctor should take a course which will kill his patient, or even take a course which had the effect of accelerating his death. The question is whether the doctor should or should not continue to provide his patient with medical treatment or care which, if continued, will prolong his patient’s life. ... And then it is asked: can it be in the best interests of the patient that a doctor should be able to switch the life support system off, when this will inevitably result in the patients death? Such an approach has rightly been criticised as misleading, ... This is because the question is not whether it is in the best interests of the patient that the should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this from of medical treatment or care.” [lxix]

Lord Goff was anxious to draw a distinction between saying on the one hand that

* ‘the patient is better off dead’ (which is an ‘absolute quality of life’ judgement); and

* ‘the patient is better off without ANH even though it is a necessary consequence of the withdrawal of life support that he will die.’ (which is an ‘incremental quality of life’ judgement).

A distinction is indeed possible if the patient immediately after the withdrawal of ANH is in a less troubled state than whilst ANH was being administered. Such could be the case with a sentient patient particularly if being fed by a nasogastric tube which, unlike the gastrointestinal tube, causes considerable discomfort. But this is not relevant to the situation of Tony Bland as described in the judgements. Thus, although the distinction sought to be made by Lord Goff is valid, his use of the distinction is not. It is one of the aims of this thesis to show that it will only be possible to avoid the misuse of such subtle distinctions when the role of death - and, in particular, the idea of ‘a good death’ - is acknowledged as being central to any resolution of ‘end-of-life’ decisions for PVS patients.

____________

The conclusions which were established in this chapter are:

Conclusion _{7 - 3} : ‘Absolute quality of life’ judgements have been used by the courts to justify the withdrawal of life-sustaining treatment in two types of cases:

(i) in cases non-terminal illness.

(ii) in cases of terminal illness.

It is argued in Part 3 that the conceptual scheme there proposed would (by using the concept of ‘a good death’) permit an appropriate resolution to all type (ii) cases; and furthermore, would (by using the concept of personhood) allow some[lxxi] of the type (i) cases to be resolved; it would not justify the withdrawal of life-sustaining treatment in other cases of type (i)[lxxii] such as, for example, cases of Down Syndrome.

Conclusion _{7
- 5} :There are at least two reasons why ‘absolute quality of life’ judgements should be rejected: they are unreliable and they are incompatible with the egalitarian principle that all persons be treated as equal.[lxxiii] Furthermore ‘absolute quality of life’ judgements often function as a mechanism of denial so that situations which are unacceptable to the decision-maker are not permitted to continue.

Conclusion _{7
- 6} : ‘Best interests’ judgements necessitate ‘quality of life’ judgements.

Conclusion _{7
- 7} : The ‘best interests’ analysis adopted in both the Ward and Bland cases necessitates the use of ‘absolute quality of life’ judgements.

[i] see Appendix C - numbers 1 and 2

[ii] James F. Drane, Clinical Bioethics (1994), at p.172.

[iii] Leplege A. and Hunt S., ‘The Problem of Quality of Life in Medicine’, Journal of the American Medical Association (1997), at p.47.

[iv] BMA ‘Withdrawing and Withholding Treatment: A consultation paper from the BMA’s Medical Ethics Committee’ (1998), p.11.

[v] Matthew Edlund and Laurence R. Tancredi ‘Quality of Life: an Ideological Critique’ Perspectives in Biology and Medicine (1985), at p.604.

[vi] Leplege and Hunt op.cit. p.47.

[vii] Many of the judgements used the concept of ‘best interests’; the relationship of ‘best interests’ to ‘quality of life’ is discussed in Section 3.

[viii] The Bland case at p.894

[ix] For example, a recent comment from the BMA states:

“‘Withholding and withdrawing life-prolonging medical treatment’, builds on the central ethical principle that the primary goal of medicine is to benefit the patient. If a treatment fails or ceases to give a net benefit to the patient, it may ethically be withdrawn or withheld and the focus of medical effort will shift to controlling distressing symptoms and keeping the patient comfortable.”

[BMA (1999b) Press release on new ethical guidance on withdrawal of treatment.]

[x] For the sake of simplicity, I have omitted any consideration of how improved ‘quantity of life’ but a poorer ‘quality of life’ might justify a treatment decision.

[xi] e.g. the statement of a medical expert in Frenchay Healthcare NHS Trust v S at p.408 [Appendix C - number 3]:

“His current quality of life is nil ...”.

[xii] In re J (A Minor) (Wardship: Medical Treatment) [Appendix C - number 10].

[xiii] As mentioned earlier, situations where there is an expectation of improved life expectancy but decreased quality of life have been omitted for simplicity.

[xiv] See Albert R. Jonsen ‘Do No Harm: Axiom of Medical Ethics’ in S. F. Spicker and H. T. Engelhardt (eds.) Philosophical Medical Ethics: Its Nature and Significance, (1997).

[xv] As mentioned earlier, situations where there is an expectation of improved life expectancy but decreased quality of life have been omitted for simplicity.

[xvi] N.B.: All examples have been taken from cases listed in Appendix C.

[xvii] Appendix C - numbers 1 and 2 respectively.

[xviii] i.e. Artificial Nutrition and Hydration.

[xix] Appendix C - number 3.

[xx] Appendix C - number 7.

[xxi] Appendix C - number 15.

[xxii] Appendix C - number 12.

[xxiii] Appendix C - number 11. This case is also discussed in the BMA report on withholding life-sustaining treatment [BMA (1998) at p.12] from where the following summary is taken:

“An important example of the interaction of law and ethics and the relevance of professional guidelines can be seen in the 1996 case of patient R. In this case, the court considered the circumstances in which steps need not be taken to prolong life. R was 23 years old and had been born with a serious malformation of the brain and cerebral palsy. He also suffered from a range of other problems, including epilepsy, blindness, deafness, incontinence and was unable to walk or sit upright unaided. He had not, according to the court judgement, ‘developed any formal means of communication or any consistent interactions with the social environment’. Not in PVS, he was described as being in a ‘low awareness state’ and was said by medical experts to be ‘operating cognitively and neurologically at the level of a newborn infant’. His doctor believed that R was deteriorating neurologically and physically as recurrent chest infections and his other problems necessitated repeated admission to hospital. Although receiving what the judge commended as a very high quality of care, R weighed only 5 stone and suffered from dehydration. His hospital consultant told the court that in her view it could be unethical to continue treating R actively and that ‘it is unquestionably in R's best interests to allow nature to take its course next time he has a life threatening crisis’. The health care team and R's family agreed to this and a DNR order was made for R. The case, however, was taken to court by an external agency - the Disability Law Service - who contested that non-treatment was in R's interests. After consideration, the court ruled that it was both lawful and in the patient's ‘best interests’ for cardiopulmonary resuscitation to be withheld and also for antibiotics to be withheld if R were to develop a potentially life threatening infection. Apparently distinguishing artificial nutrition and hydration as a different category of treatment, however, the court authorized a gastrostomy to be carried out on R.”

[xxiv] i.e. a Do Not Resuscitate order.

[xxv] BMA (1998) states (p.13):

“Conclusions from ‘R’:

The court's endorsement of this framework indicates several important points concerning the withholding of treatment from incapacitated patients including:

(i) The principle that non-treatment decisions should be taken by health professionals and people close to the patient. In the case of a serious challenge to the clinician's opinion, as occurred with the intervention of the Disability Law Service, cases will probably have to go to court.

(i) Non-treatment decisions can be based either on an assessment that treatment is not medically beneficial or on an assessment of the patient's quality of life. In either case there must be discussion with all those involved in providing care and with people close to the patient.

(i) Artificial nutrition and hydration are perceived as different from other medical treatments which can be withheld, such as antibiotics.

In the case of patients in persistent vegetative state, the House of Lords has taken the view that decisions regarding withdrawal of artificial nutrition and hydration should be subject to court review. The courts have also considered the case of a patient whose condition resembled PVS but who did not satisfy the diagnostic criteria for the condition laid down in guidelines issued by the Royal College of Physicians. In that case, the BMA took the view that it was not the label attached to the condition which should determine whether non-treatment was justified but rather such decisions should be based on the demonstrable irreversibility of damage to specific neural pathways.”

[xxvi] It was mentioned earlier that the interplay between ‘quality of life’ and ‘quantity of life’ has been omitted from this discussion; this was done to simplify the discussion. A more sophisticated analysis would speak of ‘incremental quantity/quality of life judgements’ and ‘absolute quality/quantity of life judgements’ but the basic argument against such absolute judgements would be essentially unchanged.

[xxvii] Appendix C - number 10.

[xxviii] Re J at p.938 [emphasis in original].

[xxix] The irony is that in Re J, Lord Donaldson justified the decision not to reventilate on absolute quality of life grounds - hardly compatible with calling the resulting death a ‘side effect’.

[xxx] Decisions such as the withdrawal of ANH or of ventilation when such is not done to remove a source of discomfort caused by the ventilation or the ANH.

[xxxi] i.e. those cases where the ability to communicate is permanently lost.

[xxxii] i.e. where it is believed that the ability to communicate will be restored.

[xxxiii] to place in order i.e. bigger or smaller.

[xxxiv] Objections to the use of IQ scores as indicators of the personal worth of individuals, depends on a similar argument.

[xxxv] This echoes Raskolnikov’s argument in Dostoyevsky’s Crime and Punishment when - judging the quality of life of an old but wealthy woman neighbour as being poor - he reasoned that to kill and rob her would permit him to have an improvement in his life considerably greater than the worth of life of which the old lady was deprived and that this imbalance justified her murder.

[xxxvi] The Bland case at p.894.

[xxxvii] The Ward case at p.448:

“He submitted that the quality of the ward’s life is a question of judgement but that that judgement is impermissible to our courts.”

[xxxviii] ibid. p.437.

[xxxix] “We do not know - cannot know - what lies behind these invisible walls.” David Tomkin and Adam McAuley ‘Re A Ward of Court: Legal Analysis’ Medico-Legal Journal of Ireland (1995), p.46

[xl] In Eastern philosophy the belief that morality has its origin in empathy rather than in rationality is common; it is also a view shared by Schopenhauer who argued that:

“ ... if I do you an injustice I am sinning against myself as well as you. This, said Schopenhauer, is the explanation of morality, because it explains the compassion, fellow-feeling, disinterested concern for others ... Schopenhauer disassociates himself from Kant’s doctrine that rationality is the foundation of ethics ... ”

Bryan Magee, Confessions of a Philosopher (1997), at p.483

[xli] A recent BMA report notes:

“Studies have shown that relatives’ perceptions of the patient’s likely views often differ substantially from the patient’s own wishes.^“

[BMA (1999a) Withholding and Withdrawing Life-prolonging Medical Treatment : Guidance for decision making. 3C.18.3]

[xlii] also known as the Guillain-Barré Syndrome.

[xliii] Jean-Dominique Bauby, Jeremy Leggatt (trans.),The Diving Suit and the Butterfly (1998).

[xliv] which is known as ALIS (Association du Locked-In Syndrome).

[xlv] Bauby op.cit. p.32.

[xlvi] It also described the situation of his aged father:

“ We are both locked-in cases, each in his own way: myself in my carcass, my father in his fourth-floor apartment.”

ibid. p.52

[xlvii] ibid. p.13; see also p.104:

" ... when blessed silence returns, I can listen to the butterflies that flutter inside my head. To hear them, one must be calm and pay close attention, for their wing beats are barely audible. Loud breathing is enough to drown them out. This is astonishing: my hearing does not improve, yet I hear them better and better. I must have the ear of a butterfly."

[xlviii] Quoted in The Sunday Times 16.3.1997.

[xlix] ibid.

[l] Viktor Frankl, Man's Search for Meaning (1964).

[li] Quoted in an obituary in The Times 30.9.1997.

[lii] This argument does not apply if personhood is lost. It is argued in Chapter 11 that ‘absolute quality of life’ judgements are permitted in such cases.

[liii] Reported in The Irish Times (4.2.1998).

[liv] Which was discussed in Chapter 4.

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

[lvi] This argument does not apply if personhood is lost and - as is argued in Chapter 11 - ‘absolute quality of life’ judgements are permitted in such cases.

[lvii] BMA (1998) p.11; a conclusion which is reiterated in a more recent report:

“Best interests presents an apparently reassuring standard by which decisions should be made but can be interpreted in many ways”

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

[lviii] A recent BMA report suggests that this requirement is not always honoured.

“It is obvious, however, that money spent caring for irreversibly and severely brain-damaged patients is money which cannot be used to treat other patients. This is an issue which needs to be acknowledged and addressed on a national scale as part of the debate on rationing and prioritising of resources. The BMA is concerned that, in reality, cost factors probably have a disproportionate influence on decision making for this very vulnerable patient group and is also concerned that the lack of a clear societal consensus on this most vexed area may unfairly leave doctors open to criticism.”

[BMA (1999a) Withholding and Withdrawing Life-prolonging Medical Treatment : Guidance for decision making. 3C.18.5]

[lix] As discussed earlier in Conclusion _{7 - 4}..

[lx] Chapter 6, Section 3, Subsection 1.

[lxi] R. A. Duff, in Intention, Agency and Criminal Liability (1990) suggested that to determine the ‘goal’ of a procedure we need only ask as to what must happen before the procedure would be adjudged to be successful.

[lxii] The example was given of a nephew who (reluctantly) poisons his uncle in order to gain his inheritance; legally, the nephew is considered to have intended to poison his uncle.

[lxiii] The BMA has acknowledged the existence of such criticism:

“The use of a ‘double effect’ justification has frequently been criticized and the BMA would welcome views about whether it should or could be replaced.”

[BMA 1998 p.7].

[lxiv] As mentioned earlier this came to light in a radio interview given by Dr. Howe (the neurologist in charge of Tony Bland) to RTE Radio on 26.5.1999.

[lxv] The Ward case p.432.

[lxvi] Conclusion _{6 -8} : The Ward and Bland cases held that treatment decisions for incompetent patients should be made on the basis of the patient’s ‘best interests’.

[lxvii] It is necessary to enter one proviso to this analysis: in the Bland case Lord Mustill spoke strongly against the use of the term ‘quality’ of life and the suggestion that, if the quality of life of a patient was diminished by disease or incapacity that the state’s interest in preserving that life is attenuated; such a line of argument implies:

“... that because of incapacity or infirmity one life is intrinsically worth less than another. This is the first step on a very dangerous road indeed, and one which I am not willing to take.” [the Bland case p.894]

He argued that the judgement to withdraw ANH must be the result of a balancing of the conflicting interests of the patient and not the result of a judgement of the ‘quality of life’ of the patient - thus suggesting that ‘absolute quality of life’ judgements are impermissible.

To pursue this perspective in tandem with a ‘best interests’ analysis required that Lord Mustill adopt a novel and closely argued approach:- he suggests that Tony Bland has no interests of any kind. When ANH was initially commenced Tony Bland had interests - as there then was the expectation of recovery - and the giving of ANH was then in his best interests. In order to be lawful there is the requirement that such medical intervention be in the patients best interests; thus the commencement of ANH was lawful. Now, in so far as he has no interests - and a fortiori no best interests - to continue with the treatment is necessarily unlawful. Hence it must cease.

[lxviii] The Bland case p.868.

[lxix] ibid.

[lxx] As mentioned earlier, situations where there is an expectation of improved life expectancy but decreased quality of life have been omitted for simplicity.

[lxxi] i.e. those cases where the ability to communicate is permanently lost.

[lxxii] i.e. where it is believed that the ability to communicate will be restored.

[lxxiii] This argument does not apply if personhood is lost and - as is argued in Chapter 11 - ‘absolute quality of life’ judgements are permitted in such cases.