NEVER MIND THE WIDTH, FEEL THE QALYSL e i b n i z . . . c h e r i s h e d t h r o u g h o u t h i s l i f e t h eh o p e o f d i s c o v e r i n g a k i n d o f g e n e r a l i s e d m a t h e m a t i c s , w h i c h h e c a l l e d C h a r a c t e r i s t i c a U n i v e r s a l i s , b y m e a n s o f w h i c h t h i n k i n g c o u l d b e r e p l a c e d b y c a l c u l a t i o n . “ I f w e h a d i t , ”h e s a y s , “ w e s h o u l d b e a b l e t o r e a s o n i n m e t a p h y s i c s a n d m o r a l s i n m u c h t h e s a m e w a y a s i n g e o m e t r y a n d a n a l y s i s . ” “ I f c o n t r o v e r s i e s w e r e t o a r i s e , t h e r e w o u l d b e n o m o r e n e e d o f d i s p u t a t i o n b e t w e e n t w o p h i l o s o p h e r s t h a n b e t w e e n t w o a c c o u n t a n t s . F o r i t w o u l d s u f f i c e t o t a k e t h e i r p e n c i l s i n t h e i r h a n d s , t o s i t d o w n t o t h e i r s l a t e s ,a n d t o s a y t o e a c h o t h e r : L e t u s c a l c u l a t e . ” ( R u s s e l l , 1 9 6 1 ) _ _

Increasing pressure on limited medical resources leads us toexpect inevitable rationing of medical services. It is often suggested that

it is better to ration services... explicitly rather than implicitly, and by rational means rather than on an ad hoc basis.

One means of attaining the rational ideal is through seekingto maximise the number of Quality Adjusted Life Years (QALYS) to be gained from any given expenditure. As set out in a recent article by Singer, McKie, Kuhse and Richardson the QALY process works by allocating a quality-of-life weighting to each lifestate; a ‘normal’ life counts as 1, and any medical condition (or any disability, which ishere treated as the equivalent of an incurable medical condition) results in a reduced score. The number of QALYs gained by each intervention is then calculated, using the formula

QALY gain for intervention =_((final QALY weighting) * years of life with intervention) - ((initial QALY weighting) * years of life without intervention)__

The prospective gains in QALYs to be expected from competing

interventions are then compared and ranked. One example given is "Karen", a wheelchair-bound paraplegic with severe pain, who has a quality-of-life score of 0.5. In competition for a person without any disability for a lifesaving treatment one would then multiply the expected years of life gained in each case (40, say) by 0.5 in Karen's case and by unity in the case of the person without disability, giving 20 QALYs for Karen and 40 for her hale competitor. Considered logically, the article argues, the greatest benefit would thus in Karen’s case come from givingthe treatment to the nondisabled person.The effect of the QALY loading is thus that people like Karen who have been disadvantaged once by their disability will be statistically discounted in resource allocation and will in some circumstances be disadvantaged again. This effect is known as "double jeopardy". Before addressing the question of disability I would like to pose a different thought experiment. The QALY equations also obviously favour people with longer expected lifespans; indeed, Singer et al regard preference for candidates with longer lifespans as obvious, intuitive, and less troubling than preference for candidates without disability - if you have a choiceof saving a child or an old man, you obviously choose the child. If expressed as a principle, however, or an equation, the goal of maximising QALYs has other consequences that are less intuitive. One of the most clearly established features of Australian epidemiology is that Aborigines have a sharply lower life expectancy than other Australians - at birth, an Aborigine male has a life expectancy of fifty-three compared to a general Australian male figure of seventy-three. There is, let us say, a single available life-saving intervention available in the neonatal intensivecare ward and there are two possible candidates, Yulipingu or Bruce. If one calculates the QALY yield of saving each life, it is clear that giving the treatment to Bruce is a third more efficient than giving it to Yulipingu. If one follows the logic of the QALY system, it is not unethical,

or at least not unfair, to favour whites over blacks in the allocation of health care whenever the scales are otherwise equal. I must make it clear that Singer et al do not use the Yulupingu/Bruce analogy; indeed, Singer has clearly stated elsewhere that he regards race-based discrimination against Aborigines as unacceptable. I cannot see, however, anything in their system of calculation that would avoid this consequence. If one favours decisions based on lifeyears, and if shorter lifespans correlate, as they do, with povertyand discrimination, then a colourblind test will favour whites over blacks now and for some years to come (we can certainly expect the black-white gap to be reduced over the next fifty-five years, but as Aboriginal children are being born now into conditions of disadvantage that will continue to affect their lifespan even fifty-five years into the future we cannot rationally predict with any degree of certainty that it will be eliminated or reversed). We can believe, as I hope we all would, that we should all work to remove the differential; the ethical question, nonetheless, is whether one can equitably take account of that differential while it continues to exist. It is true that Singer et al are not necessarily recommending that the logic of QALYs be followed undeviatingly or in all cases; the authors caution that

There is more to overall utility than health-related QALYs, and it is plausible to suppose that tilting the balance of healthcare towards the more disadvantaged members of society will reinforce feelings of concern and sympathy and lead to a more compassionate society.

They do say, however, that following that logic would not beunfair.

...we could understand a preference for avoiding doublejeopardy, although double jeopardy is not in itself unfair.

a person with fixed ideas about what constitutes "unjust discrimination" [who] has not reflected adequately on the implications of these ideas.I believe, after some reflection, that if the logic of QALYs

dictates that, other things being equal, people without disabilities should be assisted above people with disabilities and whites should be assisted above Aboriginalsthen these outcomes demonstrate that QALYs are not a fair method of allocating resources and should stimulate a closerexamination of the method's underlying premises. Singer et al do not, as I say, appear to contemplate QALYs being adjusted for anything other than disability or life expectancy. This would appear to amount to prejudice againstdisability, as a category. They do not propose to adjust QALYs for quality of life in any other respect; QALYs are, as far as the discussion goes, to be blind to temperament, income, sex, gender, weight, looks, habits, and legal status, at least insofar as these do not affect life expectancy. Any actual or assumed measurement that measuresquality of life will be sensitive to these factors; any measurement that excludes them is incorporating assumptions from outside the model and cannot claim to be simply translating community wishes into a resources distribution formula. It is certainly possible to insert an extra rule that says the calculation will depart from the model equation and workon the basis of a standard life expectancy where the actual life expectancy is shorter than the standard when this is due to race or poverty but not when it is due to age or disability. The question must then be why only some categories of disadvantage are seen as relevant, or as natural, or as inherent. There is no inevitability about this restriction to ‘medical’ conditions. It is feasible, though not necessarilydesirable, to use a wider range of variables. One Oklahoma neonatal facility, for example, used a formula (determining which babies with spina bifida would be treated) that combined physical and social factors - QL=NE*(H+S), where QLis quality of life, NE is natural endowments, H is the contribution from home and S the contribution from society, a formulation that meant

the treatment for babies with identical ‘selection criteria; could be quite different, depending on the

contribution from home and society. and which meant, more specifically, that children whose parents had a less than desirable

family income, family debt, employment and employability...[and] educational level

were not recommended for treatment. Whatever the practical effect of the Oklahoma formula, it was in some ways more flexible than the Singer et al scheme in that it did provide some scope to alter the rating through social changes; a higher value for S, the societal contribution, would balance either a lower value for NE or alower value for H. In the Singer et al model disability itself is seen as discrete, quantifiable, primary, and inherent, unaffected by circumstance. The theoretical developments in the field of disablement over the last twenty-five years, in which disablement is seen not as a quality inherent in the person but a statement of the relation between the person and his or her environment, are ignored. The quality of life of a person in a wheelchair isaffected, among other things, by the accommodations society makes to meet the needs of such people - by pension levels, curb cuts, bus lifts, and societal prejudice. Singer et al regard all these as at best fixed and unalterable and at worst irrelevant. The authors would, I believe, differentiate the handicap caused by racism, as something that 'we can and should try to alter', from such things as incurable confinement to a wheelchair on the grounds that the latter is ex hypothesi unalterable; I would regard that asin some respects a weak distinction, in that in both cases the physical factors are unalterable but the experience - the lived perception of being an Aboriginal or wheelchairbound - can be improved through, among other means, both the removal of prejudice and the expenditure of money.If disability was seen as a variable rather than a fixed point this would complicate, even in theory, the generation of QALYs. The method suggested relies on asking people

how long a period of life in the given health conditionthey would be prepared to trade for one year of normal

health.If a range of amenity levels need to be accommodated for each 'given health condition', depending on one’s view of the likely development of services for people with disabilities, this requires a more difficult equation. What, similarly, is 'normal health'?. The concept refers more to a platonic entity than to the actual health norm, under which in Australia illness is almost universal and certainly normal. In the 1989-90 National Health Survey, 75% of Australians reported having taken health-related actions (ranging from medication to hospitalisation) in the previous fortnight, 70% reported having experienced one or more illnesses or injuries, and 66% reported that they suffered from long-term conditions. Over fifteen per cent (15.6%) regarded themselves as having a disability and 11.5%regarded themselves as having a handicap. Nonetheless, 79% of those surveyed perceived their health to be good and only4.5% thought they had poor health (and negative responses were not necessarily correlated with disability); that is, most people who describe themselves as disabled or handicapped think of themselves as reasonably healthy, and most people who describe themselves as reasonably healthy have a continuing condition affecting their quality of life.When people are asked to compare their concept of disabilitywith their concept of normal health, they are likely to be comparing a media-generated horror with a media-generated fantasy.Another difficulty is more fundamental. In the example given,

.... Michelle says - and means it - that she would gladly give up ten years of life as a quadriplegic for a single year in normal health. This makes her QALY score 0.1.

Can any real meaning can be attached to the words "and meansit" in connection with choices that are by definition impossible of achievement? I cannot see that Michelle's comparison differs in any meaningful way from my stating that I would gladly give up a year of life as a health bureaucrat for one crowded hour of glorious life as, let us

say, Madonna. If, within the range of the possible, a representative population was asked to rate its quality of life against what that quality would be if they became richer or poorer, would the ratings be invariant in each case? If not, why should these ratings not also be includedin QALY calculations? It would certainly make sense in public health terms, not simply in QALY terms; rich people have longer life expectancies, and giving poor people more money is thus a perfectly defensible medical intervention. It is also not clear what function the word "makes" has in the quoted sentence. In context, it suggests consent to a negative life loading. If this consent existed, there wouldbe neither a moral dilemma nor a practical problem; Michellewould be knowingly agreeing to stand aside in favour of the nondisabled person. The alternative possibility is that a decision taken in the context of one theoretical comparison is taken also to bind Michelle in later more practical dealings. A fable by La Fontaine covers this issue precisely. A poor woodcutter is lamenting his lot, proclaiming loudly he would be better off dead. Death hearshim, steps up, and makes the offer. The woodcutter drops his axe and runs for his life. The moral is “Plutôt souffrir que mourir, c’est la devise des hommes’ - Rather suffer than die, that’s the motto of humanity. We do voice different, and inconsistent, preferences in different circumstances. More precisely still, Ms Carrie Coons expressed to friends and relatives her unwillingness to live on as a ‘vegetable’.At the age of 86 she was hospitalised after a massive stroke. Initially able to speak single words, her conditiondeteriorated until she was completely unresponsive. Her daughter applied to the court for permission to terminate care. The court noted that PVS was an irreversible condition, noted that PVS patients were incapable of consciously experiencing or appreciating life, and noted also that the prevailing medical view, as evidenced by the positions of professional societies, supported the withdrawal of artificial feeding from such patients. It wasordered that nutrition be withdrawn. Before the decision

could be implemented, however, Ms Coons woke up. She started eating and speaking. She retracted her previous theoretical commitment to termination. The court 'ordered further neurological and psychiatric assessments'. It is possible to hold the opinion - an ethicist has voiced it - that Carrie Coons' second thoughts on euthanasia were not objectively rational, and need not be heeded;

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

It is still necessary to note, however, that her utterances were not consistent, and it is possible to observe that thisis hardly surprising. In the example given, Michelle determines her own weighting.As Singer et al are aware, QALYs are not normally generated by asking people with disabilities the value they place on their own lives but rather by asking people in "normal" health how they would compare their present state with hypothetical states of ill-health. Even within the presentarticle it is not suggested that Karen's 0.5 loading is her own choice. This is not an inevitable feature of QALY use, and is possible to evade the issue by hypothesising a non-specific means of determining whose preference shall count for what. It is certainly not suggested, however, that the hypothetical lifesaving operation will be offered to the person who at the time bids highest on their QALY score. All these considerations threaten to introduce complicationsthat may make it more difficult to encapsulate all necessaryinformation into a single figure. Singer et al avoid many of these disputes over the practical difficulties of drawingup QALY ratings by hypothesising, after the manner of ethicists and economists, a perfect measure.

...let us assume that we have a suitable measure of thevalue that continued life holds for the person whose life is at stake. This value may be identical to what is now measured by QALYs, or it may be a measure of strength of preference, or it may be something else

altogether. For simplicity, we shall refer to it as a person's 'interest in continued life'.

Even this unspecified perfect measure, however, cannot avoidall possible objections. Any conceivable valid measure muststill assume that the value, or preference, or interest, is not only measurable but scalar, inherent, and commensurable - scalar, in that to allow the imposition of arithmetical procedures the difference between a 0.6 QALY and a 0.4 QALY must be the same as that between 0.4 and 0.2, or 0.6 and 0.8; inherent, in that in order to be stable the interest must be in undifferentiated 'natural' life rather than in life under possible alternative social circumstances; commensurable, in that any two lives of similar ratings (andany life and any hundred, or thousand, or million headaches)must be interchangeable. None of these assumptions are either probable or particularly helpful. It is possible, of course, to use QALYs in more limited waysthat do not necessarily discriminate against people with disability. It is possible to imagine a management tool where different interventions are compared in their effects on a standard life rather than the same intervention being compared in its impact on different lives. They might be used to compare, for example, two interventions, one that resulted in a longer lifespan but more pain or more impairment and one that resulted in a shorter lifespan without either. Even here, however, it is not necessarily self-evident that a QALY approach would be helpful. The appeal of the QALY is that it promises to replace a system where health funding priorities are set by historicalaccident, vested interests, prejudice, and inertia by a 'rational and explicit resource allocation process'. It is proposed that where politics, the market, and social norms now compete and combine to place values on medical outcomes this should be replaced by rational calculations based on agreed principles. It is still not clear that this would bea good thing. “The methods of science,” he [B. F. Skinner] wrote, “have been enormously successful wherever they have been tried. Let us then apply them to human affairs.” Let us, indeed.

Few of his readers observed that of the two parts of this claim the first is false and the second a non sequitur.The success of the exact sciences over the past three hundred years have led us to accept unquestioningly the matter-of-fact application of the operations of mathematics to events in the real world, and may have concealed from us the conditions that have to be fulfilled before these concordances apply. When dealing with gravity, or heat, or weight it is possible to assume that behind the accidents ofcolour, shape, cost, gender and position there are universalregularities, and that these regularities can be simulated by mathematical formulae. Two units of heat added to a further two units of heat are in most respects commensurable. With socially determined indices, however, there is no higher reality behind the veil of appearance. Apreference, or an interest, expressed in a particular case is not an instance of an underlying rule. It can be complete in itself, and need have no linkage, let alone a mathematical correspondence, with any other preference or interest. In the realm of numbers, if A>B, and B>C, then A>C; a voter can, however, prefer candidate A to candidate B, candidate B to candidate C, and candidate C to candidate A. Any requirement of consistency between preferences mustbe imposed from within the discipline of ethics, itself socially constructed; it cannot conceivably be extracted from the raw data. It would thus follow that Michelle's preference for a singleyear in normal health rather than ten years of life as a quadriplegic cannot be taken to determine her position in the different choice between having or relinquishing a lifesaving intervention. If there are no underlying principles, furthermore, then we must ask why the determination of preferences through surveyshould be preferred to the more complex, if less consistent,processes of politics and the market. Each of these has itsown means of processing information about preferences, and if they pretend to less precision they have at least the virtue of being able to register failure. Politicians can lose elections and businesses can go broke, while for

economists and ethicists any variance between prediction andoutcome is accounted for by their having been let down by the inexplicable unwillingness of the population to adopt their model in its entireity. Political processes, moral guidelines, and social habits represent, among other things,alternative modes of collapsing information, and it is exactly their acceptance of inconsistency that makes them more capable than the scientific ethicist of dealing with the level of complexity involved in the achievement of a “compassionate society”.If there are no underlying principles, a statistical and QALY-based approach does not represent the elimination of irrelevant information to allow the underlying regularities to emerge more clearly; it represents the elimination of theonly information there is or can be, and a destruction of material that should correctly be taken into account in decision-making. QALYs do not represent a distillation of the raw data, still less an enrichment. They represent an impoverishment. This can be readily seen for the individual; if I am offered a choice of two 20-QALY treatments, I can reasonably wish to undo the mathematical transformation in order to know which of two treatments withidentical QALYs has fewer years but less pain. A policymaker can, and should, ask much the same thing. The QALYs number cannot hold the information that it is necessary it should if the maximum satisfaction of preferences is to be our goal. We must give up the dream, stretching back to Leibniz, of being able to lift our disputes out of the realm of argumentinto the realm of logical, arithmetical, demonstrable, unarguable, eternal truth. If our health preferences are irreducibly socially based and socially expressed then the remedy for deficiencies in present health arrangements must be to have better and more inclusive processes for involvingsocial groups, social forces, and social interests in the allocation processes. There is, of course, no guarantee that these processes will produce either a logical or a ‘morally right’ answer, or even that they will produce a more favourable result for

people with disabilities than a QALY-based system. Present political and social arrangements, after all, produce a clear tendency for white middle-class middle-aged non-disabled voters to favour their own interests, and this tendency may be successfully mobilised against would-be reformers. It is not clear, however, exactly how these undesirable existing tendencies are to be suppressed simply through the use of QALYs. If I say that the remedy for a problem based in maldistribution of power is to adjust the distribution of power, Singer et al may very well object that this remedy is impossible of achievement, or at least unlikely. This may very well be so. Such an objection alsoimplies, however, that while white middle-class males will not relinquish power in a political contest they will nonetheless surrender the fruits of that power without demurif the mathematics of the situation tells them they should -that they will listen to rational argument even when it goesagainst their own interests, and that even when the veil of ignorance is withdrawn they will agree to an apolitical asocial QALY system that disadvantages them.If QALYs can elevate the tone of the discussion to that extent, the supplementary question arises of why they are tobe confined to the area of health - why decisions about roadwidening, or taxation levels, or industrial policy, or censorship, or any of the items that we at the moment rely on political interaction to settle, should not fall (if we assume, after the fashion of ethicists, that we have a suitable measure of the value that these decisions add or subtract to quality of life) into the realm of mathematics. This is not a frivolous objection; there have always been thinkers who believed that government could and should be handled that way - that there was an independently existing right apolitical answer to such dilemmas, an answer that could be ascertained with certainty by those not blinded by political interest or deflected by political influence, and that once this answer was pointed out it would win assent because it would be scientifically demonstrable. I cannot see that this vision of the future is very much less utopianthan one resting on changes in power relationships; rather,

I see it as the utopia of H.G. Well's samurais - governmentby the advanced minds, experts and scientists - and as such only sustainable if resting at some remove on an authoritarian and undemocratic base.I do not argue for the total abandonment of rationality in favour of political action, or even against the use of mathematics in health evaluation. Mathematics is of greatest use, however, in areas where its complexity is comparatively trivial - comparing a procedure, say, that produces three deaths in ten with another that produces one death in ten - and least defensible in the areas of macroallocation where it would be most useful. It is simplynot legitimate to assume without further argument that case-by-case adhocery driven by political processes and moral or social beliefs is intrinsically inferior to rule-governed analysis.Rather, any attempt to compress ethical, financial and social data on to a single index is intrinsically absurd. The differing imperatives of each field do not cohere, the individual data elements that could support such a measurement are too protean to be fixed by a number, and theamount of information that is relevant even at fairly basic levels of comparison overloads unitary measures and defies valid mathematical simplification. BibliographyRussell, B., History of Western Philosophy, Unwin, London

The strength of the QALY's numerical approach is that it present an analogy to the present system, where all health priorities can be, and eventually are, eventually converted into the single numerical scale of money. It must be possible, QALY theorists say, to treat two conditions as numerically equivalent, because we do just that when we allot them both the same sum of money.

74 Rose StBrunswick 305629 August 95

Peter Singer Monash University Centre for Human BioethicsClayton, Vic 3168

Dear Peter, Thanks for your considered reply; thanks particularly for correcting my misspelling of QALYs, which I suppose should stand as a warning to me of just how easy it is for me to read into a text what I expect to find there. Your letter has, I hope, helped me organise my thoughts better; at the end of which three, I think, questions remain. I’m sorry to trespass again on your time; by all means bin this if you have better things to do. You don’t even get a marker’s fee. Lifespan Measures1. Are there consequences to the use of LYs that go beyond those you raise in the article?Part of the argument, now that I look at it, concerns LYs, not QALYs. 2. I will certainly alter the text to confirm that you oppose 'selection based onrace'; my only reservation there is that the example I give is not primarily racist. The primary measure that QALYS involve is, ex hypothesi, lifespan, and if we look at the correlates of lifespan then we find 'aboriginality' (howeversocially constructed) correlates strongly. Given that correlation, expected lifespan dictates 'putting resources where they will achieve the greatest future QALY gain'; and,(in the special case of) other things being equal, that is not with the Aboriginal. 3. I say 'in the special case of other things being equal'; and on reflection I should, too, have emphasised more your point that as circumstances are usually not in practice equal QALYs do not in all circumstances act to the detriment of people with disabilities (or older people) and that it is quite possible that there will be a greater QALY gain in reducing the burden of disability than in other possible resource uses. 4. However, I would suggest there is still a sense in which the Michelle/Nina situation - the liferaft that can hold only one - is a basic counter in the debate, the ‘strongest ground’; and in those situations I still cannot

see that the QALY logic does not dictate that the longer life expectancy wins. I shall remove the Japan/Rwanda comparison if you think it overly frivolous; however, while the fact that ‘the Japanese don't need our aid; Rwandans do" is a knockdown argument when considering actual life-extending interventions, I don't think it works on the hypothetical liferaft. A dollar's worth of intervention will in almost all conceivable circumstances gain more QALYs in Rwanda than in Japan, plainly; however, in the other-things-being-equal Michelle/Nina liferaft wolves-after-the-sleigh situation - in the situation, that is, that has been specifically designed to eliminate these practical circumstances as confusing variables - QALY maximisation seems equally plainly to finger the poorer of the pair for the chop. 5. Given that initial weighting, I don't think it constitutes a real objection that 'We don't know much about the probable life expectancy of a young aboriginal person.'.Regrettably, we do, at least on an actuarial level - and I don't see any other level where such phrases from the article as 'his life expectancy is only twenty years' can have meaning. We don't know his lifespan, that is, but we do know his life expectancy. We can expect the black-white gap to be reduced over the next fifty-five years, certainly, but we cannot rationally predict that it will be eliminated or reversed. If we wanted to remove racism from the picture altogether, we can simply say that rich people tend to live longer than poor people (and the children of rich people tend to live longer than the children of poor people). They can expect more QALYs, and under a QALY-based system they will (and should) get preference. Again, if you think that both racism and SESare distractions, then try another (smaller, admittedly) gap; we know that womenlive, as a group, longer than men, and have done since we started examining such statistics. It may perhaps be possible to equalise the lifespans of the sexes, but we don't know that it's possible and can’t rationally work on the assumption that it must be possible (possible, furthermore, without costs of a magnitude thatwould affect the QALY loading of removing the gap). 6. Does it, then, make a difference that in the case of Kooris the lifespan gap is something that 'we can and shouldtry to alter'? This is obviously an imperative; something we are morally bound to do; the question is whether it is anindependent imperative, or whether it is encompassed in the notion of fairness. After all, I don't say that you

recommend that people with shorter lifespans because of medical conditions undergo double jeopardy, just that you don't think that in QALY terms it would be unfair or unjust to do so; “...we could understand a preference for avoiding double jeopardy, although double jeopardy is not in itself unfair”. It could similarly be wrong, but not unfair, to select in the liferaft case against Aboriginals. The two-stage decision process that the article seems to envisage, where in the first stage the QALYs are calculated and in thesecond stage it is considered whether their outcomes should be overridden by consideration of wider societal impacts, would certainly permit the rejection at the second stage of lifespan/ethnic weightings put up by the first stage. From the point of view of the argument, however, the review process does come at a cost; every reconsideration represents an area where the QALY process has failed to reach the right answer, and the larger the number of areas of failure the greater the reason for asking whether the first stage is valuable. 7. I would imagine that you would differentiate the handicap caused by racism, as something that 'we can and should try to alter', from such things as incurable confinement to a wheelchair on the grounds that the latter is ex hypothesi unalterable; I would regard that as in some respects a weak distinction, in that in both cases the physical factors are unalterable but the experience - the lived perception of being an Aboriginal or wheelchairbound -can be improved through, among other means, both the removalof prejudice and the expenditure of money. Similarly, I do not regard it as a strong defence that ‘as we are working inthe area of health care allocation... quality of life is discounted only for health-related reasons’. For one thing, the WHO definition of health, as ‘complete physical, mental and social well-being’ is wide enough to cover all these factors;

8. To reach a stage of complete physical, mental and social well-being, an individual or group must be able to identify and realise aspirations, to satisfy needs, and to change or cope with

the environment. Health is, therefore, seen as a resource for everyday life, not the objective of living. Health is apositive concept emphasising social and political resources,as well as physical capacities. Therefore, health promotionis not just the responsibility of the health sector, but goes beyond health lifestyles to well-being. (WHO, 1986)9. I attach a piece on medical ethics done for internal VicHealth purposes some years ago to expand the ethical implications of such a definition. 10. This isn’t at all a purely theoretical argument, in that currently the most significant question in any health macroallocation debate is whether the money would be better spent on other non-healthcare areas that might contribute more to health. If a boundary is drawn around the healthcare area health will not be best served; and if the boundary is not to be so drawn, I can’t see that there are good grounds for restricting QALYs to health-related factorsor, to bring it back to what one might call the ‘democratic’argument, for surveying people only on health-related QALY tradeoffs (or, to put it in another form, for putting disability-related issues into health-related question formats). 11. Preferences12. Are QALY preferences commensurable?You object that incommensurability of preferences would leave us with no rational basis for resource allocation, and that the political processes I contemplate would probably work against people with disabilities. I don't think it is an valid argument in favour of commensurability that our life would be inconvenient, or chaotic, or disastrous to minorities, if it was not true. One of my principal objections to QALYs is that they rest on the unargued assumption that what is useful is therefore rational. 13. I would still say that it is a basic point that commensurability of QALYs cannot simply be assumed, and as far as I can see this commensurability has not been proven, or even argued. I have considerable dispute with the use ofIQ tests, to give another example of mathematicisation, partly because they do make the claim that they are for most

purposes an effective ranking device; even there, however, the use of such tests does not claim to be fully commensurable - they are not, for example, additive, and twopeople each with an IQ of 50 are not for educational purposes claimed to be equivalent to a person with an IQ of 100. 14. Under what political and social conditions is it possible to conceive of QALYs elevating rationality above interest?15.I also have a difficulty with your way of getting round the admitted tendency of white middle-class middle-aged male voters to favour their own. Isay that the remedy for a problem of maldistribution of power is to adjust the distribution of power. You say that this will not work, and I am certainly prepared to admit that this may very well be so. You also imply, however, that while white middle-class males will not relinquish power in such a contest theywill nonetheless surrender the the fruits of that power without demur if the mathematics tells them they should - that they will listen to rational argument even when it goes against their own interests, and that even when the veil of ignorance is withdrawn they will agree to an apolitical QALY system that disadvantages them. I don't see that this is particularly less utopian; or, rather, I see it as the utopia of H.G. Well's samurais, and only sustainable if resting at some remove on an authoritarian base.

16. If QALYs could elevate the tone of the discussion to that effect, furthermore, the supplementary question arises of why they are to be confined tothe area of health - why decisions about roadwidening, or taxation levels, or industrial policy, or censorship, or any of the items that we at the moment rely onpolitical interaction to settle, should not (given that we assume that we have a suitable measure of the value that these decisions add or subtract to quality of life) fall into the realm of mathematics. This isn’t, I think, a frivolous objection, because there have always been thinkers who believed that government could and should be handled that way - that there was an independently existing right apolitical answer to these dilemmas that could be ascertained by those not blinded by political interest or deflected by political influence (this may be the same issue raised earlier about the boundaries of ‘health’). 17. I do not argue for the total abandonment of rationality in favour of political action, or even against mathematics. I would say that mathematics is ofgreatest use in areas where its use is comparatively trivial - comparing a procedure, say, that produces three deaths in ten with another that produces onedeath in ten - and least defensible in the areas of macroallocation where it would

be most useful. I believe that the amount of information that is relevant even at fairly basic levels of comparison overloads unitary measures and defies valid mathematical simplification. 18. After all, the real (fourth) question is ‘What do we do on the basis of QALYs that we would otherwise not do?’ - not whether QALYs should be heeded, but what other factors, what other information, they will be taken to override. Political processes, moral guidelines, and social habits represent, among other things, alternative modes of collapsing information, particularly at the level of the achievement of a ‘compassionate society’, and I don’t think it’s legitimate to assume without further argument that adhocery is intrinsically inferior to rule-governed analysis. Every time in this letter that 'QALY' appears it's been corrected from 'QALY', which I suppose says something about the force of habit. On a separate issue, I attach my latest venture into the PVS area. It’s been provisionally accepted by Issues in Law and Medicine, but the letter also said thatNewt and the boys had cut off their funding and that they’d probably fold before it got printed.

Best regards,

The use of QALYS in health allocation decisions can disadvantage people with disabilities. If their lives areregarded as having lower quality and thus lower numerical equivalents than those of people without disabilities, interventions designed to benefit them will generate fewerQALYs and will attract less resources.

We are in the situation of the old jewish joke; a man rushesinto the room. He shouts "Have you heard? The Brownshirts are attacking the jews and the cyclists!" "Good heavens! Why the cyclists?"The man shrugs his shoulders. "Why the jews?"