the ethics of attribution: the case of health care outcome indicators

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Page 1: The ethics of attribution: The case of health care outcome indicators

THE ETHICS OF ATTRIBUTION: THE CASE OF HEALTH

CARE OUTCOME INDICATORS

ELIZABETH RUSSELL

Polworth Building, Department of Public Health, University of Aberdeen, Foresterhill, Aberdeen AB252ZD, U.K.

AbstractÐThe ethical basis of clinical outcomes measurement is a desire to improve care in a waywhich will increase both clinical e�ectiveness and value for moneyÐbene®cence as well as competence.To date in the U.K., any debate about producing comparative indicators of clinical outcomes has beenconcerned mainly with the unfairness to individual doctors or clinical teams of judging their perform-ance on this basis. There has been less interest in the prime purpose of such production, which is toincrease the accountability and e�ectiveness of the NHS as a publicly funded service. Rather thanworking to improve clinical e�ectiveness and outcomes within clinical services, health authorities whichwish to improve outcomes for their populations have been encouraged simply to shift the contract toanother provider of care. The key issue on which the ethics of either action rests is the extent to whichthe attribution of outcome to intervention is valid and reliable and, therefore, that judgements aboutperformance are just and thus ethical. The consequence of unjust judgements may be to increase theinequalities that medical care resource allocation should attempt to reduce. # 1998 Elsevier ScienceLtd. All rights reserved

Key wordsÐhealth care outcomes, attribution, resource allocation, outcome indicators

INTRODUCTION

One of the basic tenets of epidemiology is causal

inference (Rothman, 1988), i.e. the need to demon-

strate a strong association between an event and a

preceding factor or factors before recommending

action to change something in the interests of the

public's health. The epidemiological basis of evalua-

tive health services research (HSR) brings the same

responsibility, namely to demonstrate a strong link

between an intervention and the subsequent health

care outcomes. In HSR, the term for causal infer-

ence is usually attribution: Donabedian (1988)

de®ned an outcome as ``not simply a measure of

health, well-being or any other state. Rather, it is a

change in status con®dently attributed to antecedent

care''. The focus of action arising from HSR is

usually con®ned to medical care services rather

than more generally to the healthy population or

environment, but the principles are identical to

those which follow aetiological ®ndings. Proof of

association must be sought.

The four ethical principles that are widely applied

in medical care are bene®cence (doing good); non-

male®cence (not doing harm); respect for persons

(including autonomy); and justice (Beauchamp andChildress, 1979). They interact. For example, most

clinical decisions involve a balance of good vs

harm, of reduced symptoms vs at least the possi-

bility of side-e�ects. Unequal access to bene®cial

care is unjust, disrespectful, and potentially harm-

ful. Public health ethics are just as relevant to

health care as are medical ethics about the care of

individual patients. While all four principles are rel-

evant to the interpretation of epidemiological data

about cause and e�ect, this paper focuses on the

question of justice or fairness. Beauchamp et al.

(1991) note that avoiding partiality is one of the

epidemiologists' obligations to society, and that

they should ensure that data which they publish is

not subject to ``misinterpretation or abuse that

would result from the partiality of others''.

Speci®cally, does the current use of outcome indi-

cators as the basis of medical care resource allo-

cation create injustice? Does misinterpretation

occur? And can this be remedied by better use of

epidemiology to demonstrate attribution of out-

come to preceding intervention?

The ethical concern arising from failure to under-

stand or seek evidence of causal association or attri-

bution is the extent to which invalid conclusions are

used as the reason for changes in medical care and,

arguably more importantly, the e�ects on the health

of the population that arise as a result of the

changes. Because medical care is insu�cient to do

all from which people would bene®t, choices are

necessary of what and whom to treat. If invalid

assumptions of cause and e�ect lead to unfair

actions about which services and providers to fund

and which to omit, they are contravening the prin-

ciple of justice or fairness to the providers. If the

patients who use the services are not those who

would most bene®t, then the result will be an

increase in inequity of health improvement, or dis-

Soc. Sci. Med. Vol. 47, No. 9, pp. 1161±1169, 1998# 1998 Elsevier Science Ltd. All rights reserved

Printed in Great Britain0277-9536/98 $19.00+0.00

PII: S0277-9536(98)00188-9

1161

Page 2: The ethics of attribution: The case of health care outcome indicators

tributive injustice (as well as the wider concern of

sub-optimal e�ciency).In recent years, there has been an explosion of

interest in evidence-based health care, with the

entirely ethical aim of increasing bene®cial care(bene®cence) at the expense of harmful (male®cent)and wasteful (unjust) services. Nor is the ethical

dimension, as re¯ected by equity or equality,omitted entirely from the debate. Archie Cochrane,

father of the U.K. search for ``E�ectiveness andE�ciency'', identi®ed ``equality'' as the index withwhich to compare the two components of the U.K.

National Health Service (NHS), therapy and tenderloving care (Cochrane, 1972). Robert Maxwell(1984), for a long time Director of the King's Fund

in the U.K., identi®ed equity as one of the six cri-teria for good quality care. Alan Williams (1997), in

chiding Archie Cochrane for not pursuing equalityin outcomes as well as in the process of care, prof-fers the new concept of ``evidence-based ethics''.

David Sackett (1996), closely identi®ed with thecurrent movement, has identi®ed his personal ethi-cal (and equitable) judgements in trying to provide

evidence-based care for his patients. And, veryrecently, the aim of reducing inequalities in health

has been restored to the NHS agenda by the newMinister of State for Public Health (Jowell, 1997).In practice, however, there is a quantum leap

from the ethics of individual clinical decisions, pol-icy, and academic debate to the application of suchprinciples to resource allocation choices within

health services management Ð public health ethics.In that setting, evidence is required of which choices

will reduce inequality, whether de®ned as structure,process or outcome, i.e. Donabedian's three dimen-sions of quality of medical care (Donabedian,

1980). ``Structure'' refers to the resources availablesuch as sta� and theatre time; ``process'' to howthese are used Ð the intervention; and ``outcome''

to the impact of the intervention on the recipients'and population's health.

In seeking how best to allocate resources with theaim of reducing inequality, in principle the samestandard of rigour should be applied as in clinical

evidence-based searches. In HSR, it is taken as``gold standard'' that attribution is best demon-strated in randomised controlled trials (RCT)

designed to reduce bias (AHCPR, 1993) which pro-vide robust evidence of the causal link between

structure, process and outcome. However, the com-mendable desire to provide only evidence-based``value for money'' care has led to the search for

evidence about clinical outcomes without the scien-ti®c rigour and controlled setting of an RCT. In theUS, Patient Outcomes Research Teams (PORTS)

were created in the early 1990s by the Agency forHealth Care Policy and Research (AHCPR) toidentify and analyse the costs and outcomes of

alternative methods of treatment of a range of clini-cal conditions based on retrospective uncontrolled

data from a variety of sources (Frater and Sheldon,1993). In 1992 health boards in Scotland were

asked to develop and use outcome measures in pur-chasing and setting targets for their health services(SHHD, 1993) and the central health department

set up a working group to produce clinical outcomeindicators comparing hospitals and health areasacross Scotland (CRAG, 1994), again using retro-

spective data about routine (i.e. uncontrolled) inter-ventions. In both settings, the search is to identifyand implement ``best practice'', both of what to

provide and of the level of bene®t that shouldresult. It is worth noting that from the beginning adistinction was made between an outcome measure,which was likely to be part of a planned audit or

target setting process, and an outcome indicator,which could not be explained without furtherexploration. That distinction does not appear to

have been adopted widely, nor recognised by poten-tial users, some at least of whom have confusedboth the purpose and the precision of outcome

measurement in clinical audit compared with thejudgement of service performance.The development of service-derived outcome indi-

cators raises major questions about the reliability ofthe data and therefore the validity of the con-clusions and, fundamentally, about the justice andequity of the actions that may follow. Beauchamp

et al. (1991) warn of the danger of selective pruningof information to suggest a relationship that doesnot exist. While knowingly to misuse data is

undoubtedly unethical, inadvertent pruning whichcould be avoided by proper use of epidemiologywill have the same e�ect as if it were deliberate.

Let us look in a little more detail at the sorts ofproblems that may arise.

INTERPRETING ROUTINE DATA ON MEDICAL CAREOUTCOMES

Several issues are relevant to an ethical concernover trying to judge the attribution of clinical out-comes from routine data. The ®rst is the epidemio-

logical need to choose a valid and reliable indicatorof outcome which discriminates among di�erentsubsets of patients and is responsive to real changeover time; it should also be practicable, i.e. for

most conditions one that is relatively common andeasy to obtain. If the indicator is not responsive toreal change, or is over sensitive to natural variation

so that it does not truly re¯ect the bene®tsobtained, any subsequent judgements will be invalidand therefore unethical. Unfortunately, one of the

most important messages arising from collaborativeaudit projects is that the most di�cult startingpoint is to achieve a standard de®nition of the clini-

cal condition being measured; wound infection asan outcome of surgical procedures is an example ofan apparently simple and obvious condition inwhich an agreed de®nition has been elusive (Byrne

E. Russell1162

Page 3: The ethics of attribution: The case of health care outcome indicators

et al., 1994), and the search becomes more di�cult

in line with the complexity of the condition.The second is the choice of whose perceptions of

outcome to include. Substantial di�erences have

been reported in the assessment of outcome as per-ceived by clinicians, patients and their relatives, forexample following treatment for hypertension

(Jachuck et al., 1982). It can be argued that usingthe patients' perceptions of outcomes is the most

fair and ethical approach, since it puts the medicalcare in the context of people's expectations andsince the aim and ethos of medical care is to do

what is in the best interests of the patient. SomePORTS (e.g. for back pain and prostate disease)are reported to include patient preference as a step

towards calculating health outcome in terms ofyears of healthy life (Patrick and Erickson, 1993, p.

321). However, patient generated outcome instru-ments, which truly attempt to re¯ect the patients'de®nitions of the nature as well as the strength of

e�ects, are rare: only three are reported in the lit-erature (O'Boyle et al., 1992; Ruta et al., 1994;Paterson, 1996; Hickey et al., 1996). More fre-

quently, ``patient-assessed'' means asking thepatients if they feel better. While this may well be

the best and most valid measure for the manage-ment of individual patients, its repeatability is mini-mal and it is not possible to aggregate it to perform

as a measure of the e�ectiveness and outcome of aservice for a group of patients.The third issue is whether the process is fully

documented and standardised because, if it is not, itwill not be possible to say which components are

the cause of any variations in outcomes, and there-fore attribution remains approximate and anunsound, and therefore unethical, basis for chan-

ging the provision of care. In an RCT such docu-mentation and standardisation of interventionsexists; in routine services it does not. Wound infec-

tion rates recorded in primary care were found tobe 8% compared to only 3% in hospital case-notesand 1% in computerised hospital data (Russell,

1987). Substitution or lack of skills, such as mayresult from sta�ng shortages, and the use of junior

doctors for di�cult operations is known to in¯u-ence outcome (Hardwick et al., 1992) but is oftennot recorded if unplanned. Variable pressure on

hospital beds and sta� may lead to inevitable shortcuts which have nothing to do with the procedurethat is ostensibly being monitored for its outcome.

Thus an assumption of causal association may bequite unwarranted and therefore unethical because

of the quality and completeness of the data. But inseeking to attribute an outcome to a precedingintervention even larger di�culties arise from the

confounding factors that in¯uence the relationshipbetween an intervention and its clinical outcome(Fig. 1). In the patient, demographic variables such

as age, sex and social or educational status, theseverity of the disease, and co-existing morbidity

are all potential sources of variation. Green®eld et

al. (1993) have demonstrated the in¯uence of co-

morbidity on the outcomes of hip replacementwhile Davenport et al. (1996) have shown the e�ect

of a range of casemix factors on the outcomes of

stroke management. When considering hospital per-

formance, preceding care, for example referral rates,and Ð depending on the timing of the measure-

ment of outcome Ð care subsequent to the episode

of interest, for example, use of physical therapy ser-vices, are likely to vary with the range and volume

of services available, and this is likely to vary sys-

tematically between locations (Macdonald et al.,

1995). Interestingly, there is little evidence in the lit-erature of an association between outcomes of hos-

pital episodes and the socio-economic status of

patients admitted, or of an e�ect on the level ofsuch outcome indicators as 30-day mortality when

adjusted for deprivation (CRAG, 1996). It may be,

however, that the e�ects of deprivation or disadvan-

tage are overt only in longer term or populationbased outcomes, at which level the impact of

untreated avoidable conditions would be included.

Finally, at a practical level, for most hospitals thenumbers of patients undergoing the same treatment

in any one year are too small to yield reliable com-

parisons or trends over time (Lancet, 1993).

Aggregation to overcome this problem will maskthe very di�erences that are being sought.

Faced with the myriad of potential confounders,

ethically and scienti®cally there are two extremes in

considering measures of performance based out-

comes. The ®rst is the risk-adjustment approach(DesHarnais et al., 1988; Linder, 1991; Krakauer et

al., 1992) which quanti®es all the potential direct

and indirect variables and builds a logistic re-gression model to control for all but the interven-

tion. This approach has been used mainly in the US

and is based on clinical or claims data, the latter

being available there but not in the U.K. However,the challenge to ensure that all the relevant items

Fig. 1.

Attribution of outcome indicators 1163

Page 4: The ethics of attribution: The case of health care outcome indicators

are captured to agreed, standard de®nitionsremains. Fleming et al. (1995) have reported the

same uncertainties about data quality and degree ofseverity of illness as have U.K. studies (McKee andHunter, 1995). The second extreme is the belief that

medicine is fundamentally chaotic (Firth, 1991) andtherefore its outcomes are unpredictable. Whicheverextreme one starts from, there is a long way to go

to identify accurate predictors of outcome in rou-tine clinical settings with heterogeneous patientcharacteristics. Additionally, the multiplicity of

small variations across most routine services andinterventions leads to a pragmatic assumption ofmedicine as a stochastic art (Ierochiakonou andVandenbroucke, 1993). The implication of this per-

spective is that discussion rather than calculation isthe essential method of dealing with informationabout variations in outcomes.

In the context of measuring individual patientoutcomes, the limitations of quantitative data arebeing recognised increasingly by researchers and

clinicians interested in evaluating real outcomesfrom the patients' often varying, and variable, per-spectives of what constitutes a good ``quality of

life'' for them (Pope and Mays, 1995; Joralemonand Fujinaga, 1996; Allison et al., 1997).If it is true of individual patients, how much

more must it be true of the judgement of quality of

care in and between health services. Russell (1983)summarised the potential biases of a before-and-after study even when it is controlled, far less of ret-

rospective uncontrolled observations. They includesecular and seasonal trends in outcome or prognos-tic variables; discrete changes in prognostic or other

variables; regression of outliers towards the mean;unmeasured new components of policies; and secu-lar trends in measurement errors. Similar biasesapply to comparisons of place or service.

In summary, one does not expect a temperaturereading to give a di�erential diagnosis of cause; norcan an outcome indicator, especially when the basis

of judgement is intended to be any change in the in-dicator over time or between places.

WHY SUCH PRESSURE?

If it is so di�cult to act validly and ethically on

the basis of outcome indicators measured from rou-tine clinical practice, where has the pressure comefrom for such information to be collated and used?

Examples of measuring clinical outcomes go back along way; Rosser (1993) elegantly describes theevolution of medical audit from the time of

Heroditus in 450 BC, from observational researchon patients' reactions to therapeutic drama in thehospital theatre to the beginnings of controlled

trials in the mid 19th Century. Nightingale (1863) isrenowned for her criticism of the absence of hospi-tal records to show whether charitable funds wereobtaining value for money. In recent times, since

the ®rst randomised trial in the 1940s (Daniels and

Hill, 1952) the vast majority have been within clini-cal trials. Routine auditing of clinical outcomes isstill a minority perspective in the U.K. With the

notable exception of a few national audit projects,such as the Con®dential Enquiries into MaternalMortalities (Department of Health, 1994), CEPOD

(Buck et al., 1987), and extensive local audit sys-tems such as the Lothian Surgical Audit (Gruer et

al., 1986), the focus of clinical work is not on thesort of outcome measures that would be needed tocompare performance across time or place. A sur-

vey of all Scottish consultants and 20% of generalpractitioners in 1993 (Macdonald et al., 1995),which asked about systematic recording of outcome

measures of patient care, found that when cliniciansthink of clinical outcomes they are targeting the

factor that they feel able to in¯uence clinically in in-dividual patients. Most commonly that is the con-trol of a chronic condition by ``clinical assessment'',

``follow up'', or ``review''. Moreover, hospital clini-cians often used di�erent measurement instrumentsto monitor common conditions such as diabetes,

a�ective disorders or pain, rendering comparisonimpossible. In contrast, general practitioners

reported much more consistency of measurementfor the three common conditions, asthma, diabetesand hypertension; however, these were still linked

to the target of clinical control. A minority men-tioned that they wished to in¯uence patient satisfac-tion and more general outcomes such as return to

work or school but, in causal inference terms, itappeared that clinicians were seldom making the

link of clinical purpose between for example con-trolling blood pressure and preventing stroke,although this no doubt underlay their everyday

practice. The results are consistent with the viewthat most doctors rightly and ethically focus on themanagement of each patient rather than of the dis-

ease as a group, but they also imply that there is along way to go for doctors to be thinking routinely

about the impact of their practice on the wholepopulation of patients and the evidence that isrequired to audit that outcome. Anecdotal evidence

about the reaction to the evidence-based medicine,guidelines and outcomes ``movements'' in the U.K.suggests that it has been one of caution, if not re-

sistance, with concern that clinical uncertainty Ðand thus the art rather than the technical science of

medicine Ð is not widely acknowledged by purcha-sers as a reality (McKee and Clarke, 1995). Thesurvey certainly does not provide evidence that

doctors are the source of the pressure to use clinicaloutcomes to assess the impact of medical care onthe whole population.

Nor, in the U.K., has pressure from patients touse clinical outcomes been a driving force, although

it has been suggested recently that the motto of thePatients' Association has become ``In God we trust;all others please bring data'' (Maynard, personal

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communication). Neuberger (1993) identi®ed four

reasons for this lack of involvement by consumers.First, they have been denied information by theprofessionals and services; second, the belief that

variations in treatment do not make much di�er-ence to outcome; third, the ethos that medicine isan art rather than a quanti®able science; and,

fourth, the fact that it is di�cult for people tounderstand ``risk-bene®t ratios, trends, and ten-

dencies''. The explosion of access to information inthe media and Internet may, however, increase theability of patients to ask more pertinent questions

about outcomes instead of Ð or as well as Ð theirlong established wish for more information abouttheir own condition and prognosis (Ley, 1982;

Fitzpatrick, 1990). The apocryphal ``This is my ®rstof these operations; how many have you done?''

has become a reality, and is likely to in¯uence clini-cians to think and talk in very di�erent terms fromtheir approach in the past.

Probably the ®rst example of continuous moni-toring and publicising comparative clinical out-

comes as a measure of performance was in the USand came from management. Hospital death ratesfor Medicare patients have been published by the

Health Care Financing Administration since 1986(Bowen and Roper, 1987). With the aim of improv-ing outcome in Coronary Artery Bypass Grafting

(CABG), the New York State Department ofHealth published in-hospital mortality data from

1989 onwards and the same data from 1992 for sur-geons performing at least 200 operations per year(Chassin et al., 1996). This was accompanied by a

consistent e�ort to educate members of the mediain the interpretation of the data to avoid inap-propriate witch hunting of individual surgeons.

Within the U.K., media interest raised an unsuc-cessful request for similar information for all surgi-

cal operations and surgeons. However, the NHSreforms of the early 1990s contained for the ®rsttime a focus on ``health gain'' (NHSME, 1991). The

rhetoric of outcomes was visible in a series of gov-ernment documents and created for purchasers ofmedical care the need to identify whether their con-

tracts were likely to improve health rather than justmeet demand. In England, a Central Health

Outcomes Unit was created to develop and testpopulation outcome measures which would assessthe extent to which health gain was being achieved

(Lakhani, 1996). In Scotland, a Clinical OutcomesIndicator Group was set up and has published fourreports of inter-area comparisons of a range of indi-

cators on such topics as rate of teenage pregnancy,and 30-day casefatality in hospital admissions for a

range of conditions or operations (CRAG, 1996).Great care was taken to emphasise to the mediaand other readers by means of a ``health warning''

that no inference should be made on the quality ofclinical care from these data and that they were notleague tables in any sense of ranking performance

(Kendrick, 1996). The national mean is only that; it

is not a gold standard, and an apparently good hos-pital performance may re¯ect only a di�erent catch-ment population or case-mix in that more people

die somewhere else. However, a survey of U.K. pur-chasers in 1993 found that they wanted clinical out-come measures for several reasons: to indicate what

clinical care was worth purchasing; to help tochoose which provider unit (usually hospital) to

purchase care; and to monitor contracts (Frater andDixon, 1994). While evidence of clinical e�ective-ness in controlled evaluations will aid the ®rst and

last of these, only speci®c local data will addressthe question of where to place contracts.Interestingly, although most purchasers understood

that the necessary clinical information systems didnot exist to support outcome measurement in theNHS, only 40% agreed that the lack of evidence on

clinical e�ectiveness was a major barrier to the useof health outcomes as a management tool.

Thus the main pressure to use outcome indicatorsas the basis of judging performance in the U.K.appears to stem from a desire to ensure value for

money in the NHS and comes more from centralgovernment than from the professions. The latter

have developed clinical audit, directed and encour-aged by the NHS reforms (Secretary of State, 1989)and are beginning to extend the use of outcome

measures within audit. However, and rightly giventhat perhaps only in primary care is it possible tosee the real outcomes of the multifaceted services

received by most patients, their main focus is onauditing whether the process of care meets predeter-mined standards of practice. The assumption Ð

and sometimes it may be a large one Ð is that ifthe process has been shown in RCTs to lead to the

desired outcome, or level of outcome, the same willbe achieved in a routine clinical setting. The advan-tage of a clinical focus on process rather than clini-

cal outcome is that it is probably more likely toinclude the patients' wishes and satisfaction.From an ethical perspective, the pursuit of value

for money is the pursuit of increased bene®t for thepopulation as a whole. This is to be welcomed.

However, one of the ethical appraisal questions iswhether the consequences of an action are bene®cialand fair in practice as well as in intent. A crucial

question, therefore, is whether and what action hasfollowed the publication of performance indicators.In the US, publication of the CABG lists is

reported to have led to change in clinical manage-ment and improvement of survival (Hannan et al.,

1994) Ð but a full scale internal review had to bemounted before the scope for improvement inpoorer performers was identi®ed (Dziuban et al.,

1994). In Scotland, there is unpublished evidence oflocal discussion and review of the accuracy of thedata and published criticism of the omission of

measures of casemix (i.e. severity plus other demo-graphic and comorbidity risk factors) (Davenport et

Attribution of outcome indicators 1165

Page 6: The ethics of attribution: The case of health care outcome indicators

al., 1996). However, perhaps because Scotland is a

small country and has a uni®ed national health ser-vice, the extent of di�erences between hospitals isactually quite small: for most case-fatality indi-

cators, only a few hospitals show con®dence inter-vals that do not overlap the national mean (CRAG,1994). Thus the indicators are a ¯imsy basis for

action to withdraw a contract or even to institutean enquiry with a view to other sanctions. There is

no report in the literature of sanctions such as with-drawal of accreditation; however, the threat of suchsanctions, or even the drive to compete in a league

table, could lead to perverse incentives such as non-admission or earlier discharge of patients mostlikely to die (Lancet, 1993). It is perhaps not sur-

prising that in the US the Health Care FinancingAdministration has ceased publication of hospitalmortality data because of the di�culty of interpret-

ation (Blumenthal and Epstein, 1996).At the time of writing, publication of clinical out-

come indicators will continue in Scotland and hos-pital mortality rates are being introduced inEngland and Wales. However, the Scottish Chief

Medical O�cer has recently expressed his concernthat, ``far from assuaging public concerns, the pub-

lication of Outcome Indicators may have deepenedpublic anxiety regarding the equity of their accessto the system'' (Carter, 1997). He relates his pos-

ition to an increasing level of public comment,including requests to publish league tables of indi-vidual performance as a basis for choosing to

whom to be referred. His preferred route toimprovement is to de®ne ``acceptable'' levels of per-formance and to monitor their attainment in a

Quality Assurance Programme.Since the indicators describe only what is an

average or a good level of outcome, and give noclue about what is best practice to achieve that out-come, the Chief Medical O�cer may have chosen

the more productive approach, and perhaps thepublic will indeed draw con®dence from the factthat the professions are striving to attain the best

standards of medical care. However, the assumptionunderlying this position is that the public is unable

to understand that variation may arise from any ofthe factors in Fig. 1, and not solely from poor clini-cal performance. The alternative assumption, and

one which carries much stronger ethical reasoning,is that the public has a right to know what is hap-pening in a monopoly public sector service, a right

to ask questions and get explanations in terms thatthey understand Ð even if the answer is that ``we

don't really know why''. The days of closet patern-alism are over. It is interesting to speculate whetherone of the quickest ways to reduce demand for

medical care would be to share with the public thefact that many popular clinical services are ofunproven bene®t! Certainly the public in the U.K.

is intended by central government to be moreinvolved in the discussion of health care priorities

(NHSME, 1992), in particular so that services arepurchased more on the basis of wants than of

needs. Thus a shift of contract which implies alteredaccess should be the subject of discussion with thelocal community. If communities re¯ect individual

wishes, it is likely that public as well as patientsmay be less concerned about the ultimate clinicalbene®t than about the comfort and consolation that

accompanies treatment; once again, the conclusionhas to be that clinical outcomes are only onedimension of bene®t, and the comparative outcome

indicators may have little impact on patient choicewhen that choice involves either long distance hos-pitalisation or none at all.

WHAT THEN IS THE ETHICAL ISSUE?

It has been widely demonstrated, and accepted asreal, that people in poorer socio-economic groupshave a much worse mortality experience than others

in the same country (e.g. Marmot and McDowall,1986; Balarajan and McDowall, 1988). However,the evidence for an association between socio-econ-omic status and the use of health services is not

easily interpreted. Tudor Hart (1971) described theInverse Care law, by which the availability of goodmedical care tends to vary inversely with the need

of the population served, and highlighted the resul-tant inequality of access to care. People in semi-and un-skilled manual working groups in the U.K.

use relatively fewer preventive services (Benzeval etal., 1995), and there is evidence that people in man-ual working households are slower to seek medical

help when they are ill (Bucquet and Curtis, 1986).In a national audit of the management of ovariancancer, signi®cantly more patients in the mostdeprived areas presented with stage 4 i.e. more

advanced disease (Junor, 1993). Also, patients inthe least deprived categories were signi®cantly morelikely to be seen on the ®rst occasion by the appro-

priate specialist. However, Benzeval et al. alsonoted that very little is known about the existenceof inequalities in access to medical care in relation

to need for care, especially hospital care, and rec-ommend that health authorities carry out ``equityaudits'' (i.e. monitoring of the uptake of services bydi�erent socio-economic groups) as a matter of

urgency. The di�culty is that, although statistics ofhospital discharges show that people in poorer liv-ing areas make more use of hospitals (Carstairs and

Morris, 1990), it has not yet been demonstratedclearly that this extra use is enough to meet theirgreater level of need as re¯ected by their higher

mortality (Carstairs and Morris, 1991).A further component of the debate requires a

brief mention at this point. There is a growing

belief that the greater levels of illness experiencedby poorer people will be lessened not by hospitalservices but by changes in their day-to day life cir-cumstances, including income, which increase their

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capacity to make choices (e.g. Marmot and

McDowall, 1986; Wilkinson, 1992). However, suchchanges operate on a longer time scale. In the im-mediate term, access to e�ective rescue services pro-

vided by hospitals when people are ill is an essentialcomponent of any strategy to reduce di�erences inmortality.

Thus, statistical proof of the association betweenthe potential to bene®t from medical care, the use

of it and its supply is still lacking. However, the cir-cumstantial evidence is regarded as su�cientlystrong to justify improving access to services as a

means of reducing health variations between socio-economic groups in the U.K. (Health of the NationGroup, 1996). Moreover, whatever the evidence, it

is widely believed that socially deprived areas of thecountry, as re¯ected by higher standardised mor-

tality rates, require more medical services thanother areas. E�ective medical services in deprivedareas with higher mortality rates will produce

greater bene®t for the same investment becausethere is more to be done; they will be more e�cient,not less. This belief is the basis of the formulae for

distributing NHS resources to di�erent areas withineach of the four countries of the U.K. (e.g. DHSS,

1988).Against that background, any change in resource

allocation which di�erentially reduces the avail-

ability of services in poorer areas or to poorerfamilies would be in the face of the widespreadbelief that such areas and families require more, not

less, care. It could of course be argued that if theyare bad services then people are better o� without

them. That will usually be true, however, only ifbetter services are made at least equally availableand accessible. Given that a growing number of po-

tentially life-threatening conditions respond betterthe earlier that treatment is started, the logic is ines-capable that reducing access, whether in volume or

by distance, is likely to increase avoidable mortalityin areas with a higher proportion of poorer people.And, as we have seen, the poorest outcomes as

judged by case-fatality or mortality rates arealready in those areas which are most deprived Ð

even before treatment. In the context of an overallreduction in hospital services in the U.K., thealternative to a local specialist centre with a poor

30-day case-fatality rate will not be another localspecialist centre except in large conurbations.Obviously this thesis requires evidence, and the new

pattern of hierarchical cancer services in the U.K.Ð whereby there will be a smaller number of ter-

tiary referral centres but the devolution of someexpertise to district hospitals (Department ofHealth, 1994) Ð may well provide some evidence

of the e�ect of distance from specialists on survivalrates for common cancers. However, even the possi-bility that there will be reduced access, and there-

fore higher morbidity as a consequence, is su�cientto raise a concern of potential injustice.

The search for a formula or statistic by which tojustify di�cult rationing decisions is understandable

and shared by clinicians (Boyd, 1979). As yet, how-ever, and perhaps for the foreseeable future, the in-terpretation of variation must be a complex

qualitative process which aims to understand andattribute to hospital performance only those de®citsfrom the gold standard (far less from the national

average) that lie at the hospital's door and which itis within the power of the hospital to change. Quiteapart from the potential e�ect of reduced access, an

un-evidenced response of removing resources froma hospital may not only reduce access, it will alsodistract attention from avoidable factors such as theavailability of healthy nutrition, clean air and hy-

giene that might have more impact on improvingoutcomes, albeit in the longer term. To withdrawservices in areas with higher hospital mortality may

be to compound rather than solve the problem.Thus the consequence of unjust judgements may beto increase the inequalities that medical care

resource allocations is charged with reducing.

AcknowledgementsÐI am grateful to Gavin Mooney andSimon Naji for comments on the ®rst draft of this paper.

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