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R io r th m lSSN l )269-9702Vo hm c R Number 4 1994

A Report from The NetherlandsHEALTH CARE AND T H E PRINCIPLEOF FAIR EQUALITY OFOPPORTUNITY~ ~~

GERT JAN V A N DER WILT

A B S T R A C TI n Th e Netherlands, the public fun din g of a number of health care services iscontroversial. W h a t can we learn f r o m this about the moral concerns thatunderlie these judgemen ts? A n d , i there is anything to learn, can we use thisimproved understanding to scrutinise the adequacy of particular decisionsconcerning the publi c un di ng o f health care services? I n the present paper, I wil lanahse three cases: corrective surgev, In Vitro Fertilisation and livertransplantation. I wil l summarise the arguments that have been used to supportor to challenge the pub lic fu ndi ng of these services. I will then assess the meritsof Daniels fair equality o f opportunity account of justice in health care. Canthis account improve our understanding of the moral concerns unde+in

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330 GERT A N V A N DER WILTfunding of services has been particularly controversial: In VitroFertilisation, plastic surgery and liver transplantation. I willsummarise the arguments provided by the National MedicalInsurance Board to limit reimbursement of the costs of theseservices. This Board is an important permanent advisory committeeof the Dutch government, with representatives from different socialgroups. I will also summarise some of the public responses,challenging these policy measures. I will then raise the question as towhat extent Daniels model can give an adequate descriptiveaccount of the controversy over public funding of these health careservices in The Netherlands. What might we gain from such anenterprise? (1) I wish to explore whether our understanding of themoral concerns, underlying judgements about the public funding ofhealth care services, can be improved by invoking Daniels account.(2) I wish to explore whether the decision-making process whichprecedes decisions on public funding of health care services can beimproved by invoking Daniels account. (3) I wish to explorewhether Daniels account of justice in health care can besupplemented or refined by testing it against actual judgements andarguments, used in the public debate about the public funding ofhealth care services in The Netherlands. From this, it will beobvious that my problem (but not oniy mine) is that I do not have afixed point of reference. It is by moving to and fro between theoryand practice that I hope to contribute to the question of what it isthat makes health care services the appropriate object of publicresponsibility and concern.

Proposals f o r health care r e f m in The Netherlands and Daniels accountof justiceAs in many other countries, the issue of cost containment and justicein health care has stirred a discussion in The Netherlands about thedistinction between health care as a public and as a private affair.The Dutch government has proposed to achieve containment ofpublic expenditures to health care by introducing changes that arereminiscent of the US-managed care system. An importantcomponent of this intended change is the introduction of a two-tiered health care system. Compulsory insurance is envisaged forbasic health care services. Basic health care comprises proceduresthat meet a number of specified criteria, including, according to therecommendations of the Government Committee on Choices inHealth Care (1992): the procedure should be necessary from theperspective of the community, it should be sufficiently effective andefficient, and its costs should be such that they cannot be reasonably

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A REPORT FROM T HE NETHERLANDS 331expected to be borne individually. These criteria should delimitthe public concern and responsibility for health care. The costsassociated with utilisation of health care services that do not meetthese requirements should be covered by voluntary complementaryinsurance or be paid out-of-pocket.

So far, the criteria of the Government Committee have hardlybeen operationalised. The first of these criteria (that a health careservice should be necessary from the perspective of the community)bears some resemblance to Daniels fair equality of opportunityprinciple, set forth in Just Health Care.2 Here, Daniels tries to offeran explanation why i t is that most of us attach moral importance tomany, but not all, instances of health care:

1. Health impairments often reduce an individuals fair share ofthe normal opportunity range;2. health care procedures can, to various degrees, prevent thisfrom happening, restore an individuals fair share of thenormal range of opportunities, or compensate for deviations ofan individuals fair share of the normal opportunity range;3 . fair equality of opportunity is an important and widelysupported aspect of our sense of justice.

Consequently, the capacity of health care to contribute to the idealof fair equality of opportunity helps to explain why many, but notall, instances of health care are deemed morally important and,consequently, justify commitment of collective resources.

Daniels account does not require that, at any given time,opportunities open to different individuals should be the same.Daniels argues, for instance, that a gradual decrease of the range ofopportunities that is open to an individual as the result of ageing isacceptable. Thus, the presence of individuals in society with lowranges of opportunities open to them is not necessarily at variancewith the requirements of the fair equality of opportunity account. InDaniels words, individual legitimate opportunities are qualified asfollows:

The normal opportunity range for a given society is the array of lifeplans reasonable persons in it are likely to construct forthemselves. The normal range is thus dependent on key featuresof the society - ts stage of historical development, its level ofmaterial wealth and technological development, and evenimportant cultural facts about it (. . .) The share of the normalChoices in Health Care: Report by the Government Committee on Choices in Health Care,

2N.Daniels, Just Health Care, Cambridge: Cambridge University Press, 1985.The Netherlands, 1992.

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332 GERT J A N VAN DER WILTrange open to an individual is also determined in a fundamental way byhis talents and skills. (. . .) impairment of normal functioningthrough disease and disability restricts an individualsopportunity relative to that portion of the normal range his skills andtalents would have made available to him were he h e ~ l t h y . ~

Clearly, what constitutes the normal range of opportunities for agiven society, and what constitute individual fair shares thereof,are normative and socially negotiable judgements.*

Opportunity can probably best be understood as a specific caseof individual freedom, concerned primarily with the presence orabsence of obstacles limiting what someone may do or have if he orshe so w i ~ h e s . ~o increase opportunity is to diminish o r eliminatethe impact of such obstacles upon an individuals freedom. Toensure an opportunity, those obstacles must be superable by anagent. To equalise opportunity is to equalise the effect of givenobstacles upon all relevant individuals who are by their freely willedactions in pursuit of equivalent sets of opportunities. In the context ofhealth care, then, an individuals fair share of the normalopportunity range is reduced if someone, as the result of impairedhealth, cannot do something or have something through his or herown freely willed actions, whereas it is generally agreed that he orshe should be capable of doing this, or having this, in view of his orher talents and skills, and in view of pursuits that are consideredlegitimate within the particular social context .6

An immediate consequence of Daniels account is that resourceallocation decisions in health care have to rely on the followinginformation: what difference does it make to individuals withimpaired health to have access to a collectively funded, specifiedhealth service, and not having access to it?7 This will to a largeextent be determined by the following, related factors:

Just Health Cure, pp. 33 and 34; Daniels emphases; page numbers refer to the1988 edition.

Daniels tries to objectify impact on opportunity by relating it to ChristopherBoorses concept of normal species typical, age- and sex-adjusted structure andfunction. In this paper, instead of trying to anchor the concept of equality ofopportunity to objectively ascertainable deviations of structure and function,emphasis will be on reaching intersubjective agreement on the relevance andmeaning of the concept in the context of health care.5S.J.D.Green, Competitive Equality of Opportunity: A Defence, Ethics 100,

60ppor tu ni ty can also be reduced if someone cannot bu t do or have something,contrary to his or her own freely willed actions; someone who is, in other words,coerced into that action or possession.I will use not having access as a shorthand for two situations: either nocollective resources are allocated to finance a particular health care service, or

1989, pp. 5-32.

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A R E P O R T FROM T H E N E T H ER L A N D S 333- he impact of the health impairment itself what is the naturaldisease history and what is the general prognosis of theseindividuals in the absence of the specified medicalinterventions?- he impact of the specified health care procedure: to whatextent is it capable of preventing (further) reduction of anindividuals fair share of the normal opportunity range,restore it, or compensate for reduced opportunity?- he impact of the financing scheme (public, private or some

mix between these two). This, in turn, will be dependent on.the costs that are associated with utilisation of the health careservices and the individuals resources.

Clearly, these aspects may vary among different individuals and,therefore, the difference between having access to collectivelyfunded services and not having access to them is at least partlycontextually dependent. To make some generalisations, we have toabstract from such individual differences and determine whether it isstill possible to obtain meaningful information about the impact ofhealth impairments and the utilisation of collectively funded healthcare services. In the following, I will present an example of assessingseverity of disease and effectiveness of health care procedure: thecase of diabetes (type I) and insulin. We should ask, then:- s someone who is afflicted with diabetes likely to experience a

reduction of his or her range of opportunities, (i) as the resultof this disease, (ii) in the absence of medical interventions, and(iii) irrespective of his or her particular life plan; that is,irrespective of his or her particular conception of what it is thatmakes life worthwhile living.- f we consider this to be the case, we proceed by asking: is there a

medical intervention that could prevent this from happening,restore the former opportunity range, or compensate for this?

To answer these questions, we first need to ask whether bydiabetes (type I) a group of patients is sufficiently clearly defined,and whether this group is sufficiently homogeneous: what is themean age of onset of the disease, what is the general prognosis? Arepossible medical interventions sufficiently effective and are theycollective resources are allocated but criteria of eligibility restrict access to only partof the individuals who might benefit from utilisation of the service. To myknowledge, the former occurs rarely if at all, whereas the latter is a relativelycommon phenomenon in The Netherlands (criteria for reimbursement of costsassociated with utilisation of pre-natal diagnosis, transplantation, screening, in vifrofertilisation, cosmetic surgery, etc.).0 Basil Blackwcll Ltd. 1994

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334 GERT A N VAN DER WILTequally effective in each case? If we feel that the group of diabetespatients is not sufficiently homogeneous to answer these questions,we may wish to differentiate between different sub-groups. If, as islikely in this particular case, we consider that diabetes generallytends to reduce opportunity, and that medical interventions existthat can effectively prevent this from happening, we should concludefrom this that the costs that are associated with this type of healthcare provision should in principle be borne collectively. I have toadd in principle, since impact on opportunity of healthimpairment and medical interventions are necessary, but notsufficient, conditions for collective funding. For, in addition, wehave to assess whether the collective funding of these servicescontributes to the ideal of equality of opportunity. The requiredresource employment may be such that it precludes maintenance orrestoration of fair shares of the normal range of opportunities oflarge numbers of other individuals. This occurs if (1) resources arelimited, and (2) resources have alternative modes of employment,each contributing in a specific way to the objective of fair equality ofopportunity. Both conditions hold in health care. This issue isdiscussed by Daniels when addressing the question whether the fairequality of opportunity account requires the public funding of hearttransplants:

Clearly the transplants count as meeting a medical need, indeedone that is important given the impact of organ failure on theindividuals share of the normal opportunity range. Still, theimportance of meeting the need must be assessed from theperspective of a system which protects fair equality of opportunityin many contexts and in the light of resource scarcity. From thisbroader perspective, the theory might suggest that intensifyingthe acute-care bias of the US health care system fails to protectequal opportunity as well as other uses of resources would. Many otherservices - ersonal care, preventive, and other help for thedisabled or mentally ill - might be far more efectzve and ejjicientways ofprotecting the normal opportunily range fo r a much larger class ofpeople.Thus, to qualify for public funding, the following conditions

should be met: a disease condition should generally curtail theindividuals fair share of the normal opportunity range, the healthcare procedure should prevent this from happening, restore thenormal opportunity range to a sufficient degree or effectivelycompensate for reduced opportunity, and the costs should be in

aJusl Health Care, p . 226; my emphases.0 Basil Blackwell Ltd. 1994

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A REPO RT FROM T H E NETHERLANDS 335reasonable proportion to the expected benefits. Although it isimportant to make criteria like these explicit, it is only thebeginning. It is important because it allows to establish whetheragreement can be achieved on the adequacy of these criteria andtheir relevance to this particular context. It is only the beginningsince it remains to be established which health impairments areconsidered to curtail individuals opportunity ranges, which healthcare services are considered to counteract this sufficiently, andwhich public outlays in health care are considered to contribute tothe ideal of fair equality of opportunity. It remains to be establishedwhether the principle is sufficiently meaningful to all partiesinvolved, whether it appeals to a certain sense of justice which is,through the principle, further articulated, and whether we arecapable of achieving a sufficient degree of consistency in applyingthe principle. A problem is that judging the adequacy and relevanceof the principle strongly depends on these aspects. The proof of thepudding is in eating it. My point is that too little effort is devoted tothis phase: testing the adequacy of principles against the backgroundof actual judgements and arguments put forward in the publicdebate and u.u.: testing the adequacy and consistency of thesejudgements and arguments against the background of a principledaccount of justice.

In the following, debates in The Netherlands about the publicfunding of a selected number of health care procedures will beanalysed in terms of Daniels model.2DUTCH HEALTH CARE SYSTEMExamples of health care services where the appropriateness of publicfunding has been challenged in the last few years in The Netherlandsinclude: psychotherapy, physiotherapy, In Vitro Fertilisation (IVF),heart-lung transplantation, liver transplantation, corrective surgerygand sex change. I will discuss IVF, liver transplantation andcorrective surgery in more detail. Of these, liver transplantation hasbeen recently included into the benefit package of the sick funds; thecosts of corrective surgery are reimbursed, except when surgeryserves a purely aesthetic purpose; IVF is not included into thebenefit package, but the costs are usually reimbursed on the basis ofa provisional arrangement. In the following, the proposedreimbursement policies, the arguments and the public responses willbe discussed. I will summarise the recommendations of the National

FAIR EQUALITY OF OPPORTUNITY AND THE

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336 GERT J A N VAN DER WILTMedical Insurance Board, which in each case have been taken on bythe government. lo2AIn 1990, the National Medical Insurance Board brought out anadvice to the State Secretary of Health on reimbursement of thecosts of plastic surgery." I ts aim was to change the reimbursementconditions, dating from 1980. In that year, an arrangement hadcome into effect which, for reasons mentioned below, was judgedunsatisfactory. The arrangement from 1980 had as a result that atleast half of the costs, and in some cases all of the costs, of plasticsurgery were reimbursed by the sick funds. It was partly enacted toachieve a reduction of health care costs. It appears, however, thatthe number of plastic surgeries kept increasing at the same ratebefore and after its enactment. This warrants the conclusion that the1980 policy measure was, in this sense, ineffective. In the following Iwill briefly outline the arrangement during 1980 to 1990, and thensummarise the proposals for change.

Conflicts over the public funding ofplastic surgery

Arrangement for reimbursement of the costs o plastic surgery3om 1980 to1990During this period, the costs of all forms of plastic surgery were atleast partly covered by the sick funds. The patients had to pay half ofthe costs out-of-pocket, up to a certain maximum (Dfl 3.800,- peryear).'* However, costs of plastic surgery werefully covered by theSick Fund if one of the following conditions held:

1. Plastic surgery was carried out to correct a bodily imperfectionwhich was beyond the normal variation of outwardappearances;

2. plastic surgery was carried out to correct a bodily dysfunction;3. plastic surgery was carried out to prevent or reduce substantial

To advise the regional sick funds on the interpretation of the firstcriterion, a national committee was established. The task of this

psychological suffering.

The National Medical Insurance Board (de Nationale Ziekenfondsraad)controls all the local sick funds; the local sick funds are involved in implementationof the law regulating compulsory medical insurance. The Board also acts as anadvisory committee to the government. It consists of representatives of employers'organisations, trade unions, local sick funds and health care providers, and of anumber of independent members appointed by the government.

National Medical Insurance Board (de Nationale Ziekenfondsraad): report onplastic surgery (report no. 493).

1 Dfl = 0 .5 3 US$ and 0.46 ECU.I f

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A R E P O R T F R OM T H E N E T H E R L A N D S 337committee was to reduce regional inequity in decisions ofreimbursement of costs associated with correction of outwardappearances that were considered beyond the normal variation.It was this criterion, and the functioning of the national committee,which caused considerable difference of opinion.Perceived shortcomings of the arrangementIt frequently occurred that the judgement of local sick funds,requiring that individual patients should bear half of the costs ofplastic surgery, was challenged by patients and plastic surgeons.The difference of opinion was about the question whether aparticular bodily imperfection was beyond the normal variation ofoutward appearances (the first criterion). These cases werepresented to the national committee. According to the report,however, it repeatedly happened that the dispute could not be settledin a way which was satisfactory to all parties inv01ved.I~

The application of the second criterion (bodily dysfunctions)had usually not presented any problems; application of the thirdcriterion, however, had again presented some ambiguities.According to this criterion, no co-payments are required if plasticsurgery is carried out to prevent or reduce substantialpsychological suffering. The reasoning behind this criterion wasthat complete coverage of plastic surgery is justified, if it helps toprevent the incurring of (probably higher) future costs to the sickfunds. Thus, the situation should be one of a choice betweenbearing the costs of plastic surgery now, or bearing the costs of, forinstance, psychotherapy in the future. T o qualify for completecoverage, i t had to be made sufficiently plausible that (1) bodilyimperfections, within the normal range of variation, are the onlyor at least the major cause of (future) severe psychologicalsuffering, (2) the resulting psychological suffering will incur coststo the sick funds, and (3) plastic surgery will prevent (1) and,therefore, ( 2 ) .An indication of the severity of psychological suffering wasrecommended by the presence or risk of psychological disorders suchas phobias, neuroses, depressions and psychoses, in combinationwith symptoms such as social isolation or risk of suicide.

I The criterion, whether plastic surgery is carried out to correct a bodilyimperfection which is beyond the normal variation of outward appearances, fitswith Boorses concept of health and disease: it is an attempt to define normality in astatistical sense. It is ironic that particularly this criterion, which aims atobjectivity, was considered unsatisfactory because its interpretation was toosubjective.@ Basil Blackwell Ltd. 1994

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338 G E R T JAN VAN DER WILTRecommendations o r changeIn view of the problems, discussed above, the National MedicalInsurance Board has recommended to delimit more strictly theentitlements of patients. Generally, the costs of corrective surgeryshould be reimbursed in cases of medical need only, and not if it iscarried out for aesthetic reasons. Specifically, the Board hasproposed that the costs of plastic surgery should be fully reimbursedin those cases where it is aimed at correction of

1. deviations in outward appearances which are associated withobjectively demonstrable bodily dysfunctions (correction of thenose if breathing is impaired; correction of the breasts if theyimpede physical activities);

2. mutilations which are the result of disease, accident or medicalintervention (malformations as a result of rheumatoid arthritis,paralysis of the facial nerve, or burns; re-plantation of limbs;reconstruction of amputated limbs or breasts);3 . paralysis or slackening of the upper eyelids if it causesobjectively demonstrable impairment of sight;4 . certain congenital malformations: cleft-palate, -lip and -jaw;malformations of the bony face; protruding ears; benigngrowth of blood and lymphatic vessels, and connective tissue;malformations of the urinary tract and genital organs;5 . outward sexual characteristics in the case of transsexuality ;6. deviations in outward appearance which are the cause of suchpsychological suffering that the patients mental health isseverely and permanently impaired, and where correction ofthe deviation is sufficiently likely to relieve the psychologicalsuffering.

Not covered are the costs of correction of skin creases which resultfrom slimming, tattoos, male baldness, face lifts, small breasts, fatrolls, etc.

The Board states that if the costs of plastic surgery are confined tothe cases listed above, there is no need for a national committee, norare co-payments required: either the costs are fully reimbursed, ornot at all. The Board expects that the proposed changes will result incost savings (up to Dfl 25 million per year).Public responses to the proposed changeThe policy measure implied that the costs of aesthetic surgery were nolonger covered by the sick funds, whereas these used to be coveredeither for 50% or for 100% (if the surgery was performed to correct anoutward appearance which was outside the normal range of variation).According to some, this was unjustified. Their arguments were that

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A REPORT FROM TH E NETHERLANDS 339cosmetic surgery is not a luxury: cosmetic surgery is frequently anabsolute requirement to maintain or restore a balance between anindividual and his or her social environment. 4 Another opponent putit like this: cosmetic surgery has primarily to do with the wish to alterthe image an individual has of his- or her-self in a context where verylittle else can be changed. In other words, it involves an individualsidentity. 52BFrom 1980 onwards, local sick funds were increasingly approachedby insurees, demanding reimbursement of the costs associated withIn Vitro Fertilisation (IVF). At this time, the local sick funds refusedto fund IVF. Their argument for this was that IVF was still anexperimental procedure which could not qualify as commonpractice. In 1986 the National Medical Insurance Board advisedthe State Secretary of Health to refund 1600 IVF treatments duringa period of two years, at Dfl4500,- er treatment, to be performedin five different hospitals. These IVF treatments should serve as thebasis for an evaluative study of IVF. Specifically, it should establishthe cost-effectiveness of IVF and the expected demand for IVF. Theevaluation study was completed in January 1989.16 The NationalBoard used the data of this report to assess whether the costs of IVFshould be reimbursed. The report of the Board on this subject wasbrought out in March 1989. This report is interesting but at thesame time disappointing. It is interesting because the criteria thatare considered relevant to decide on reimbursement of IVF areexplicitly mentioned. It is disappointing because, in spite of theexplicitation of these criteria and the availability of factualinformation from the evaluation study, the Board does not reach adefinite conclusion. It recommends that provisionally the costs ofIVF should be reimbursed (adding a number of restrictions andqualifications). However, it also states that, in the long run, it isconceivable that IVF will not qualify as basic care. As such it shouldnot be included into the basic benefit package and the costs shouldbe borne individually. This question is related, however, to the

I J.C. van der Meulen, Plastic Surgery is Not a Luxury (in Dutch:Plastische chirugie is geen luxe), NRC-Handclsblad, 1990.l5 K. Davis, Cosmetic Surgery: Luxury, Nonsense or a Cry for Help? (in

Dutch: Kosmetische chirurgie: luxe, waanzin of noodkreet?), Volkskrant, 1992.l6 G. Haan, R. van Steen and F.Rutten, Evaluation of In Vitro Fertilization (inDutch: Eoaluatie uan In- V itro-Fcrtilisntic), University of Limburg, Department ofHealth Economics, 1989.National Medical Insurance Board (Nationale Ziekenfondsraad): report onIVF (no. 442, 1989).

ConJicts over the public fund ing o In Vitro Fertilisation

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340 GERT JAN VAN DER WILTcomprehensive change of the Dutch health care system which is nowgradually taking place. T he Board did not wish to run ahead of thisdevelopment. At this moment, no decision has as yet been made bythe Government whether IVF should qualify as basic care. In thefollowing I will discuss the decision criteria mentioned in the Boardsreport on IVF.

Decision criteriaIn the report on IVF , the Board mentions the following criteria thatcan be of use when assessing whether the costs of IVF should bereimbursed by the sick fund:1 . Effectiveness of IVF for different indications. Effectiveness of

IVF is expressed as the number of live born children as afraction of the total number of IVF treatments (approximately1 out of 10). With a maximum of 3 IVF treatments per couple,and careful selection of candidates, birth of a live child can bereached in approximately 1 out of 3 couples. The probability ofadverse outcomes is acknowledged.2. The question whether IVF can be considered as commonpractice: whether the intended benefits and the safety of theprocedure have been sufficiently documented. The Board doesnot address this question.3 . Cost-effectiveness of IVF for different indications. There areseveral factors that influence cost-effectiveness of IVF. TheBoard recommends that a maximum of 3 treatments per coupleshould be reimbursed; in that case, the average costs of eachpregnancy which is brought to term is approximately Dfl25.000,-. Note that here, only intraprogrammatic comparisonsare made.

4.The question of substitution: are there any equivalent healthcare services that are less costly (e.g. surgical operation of theFallopian tubes)? This question is not further addressed b y theBoard.5. The question whether IVF can be qualified as a health careprocedure. According to the Board, IVF is indeed a health careprocedure (but see below): it is a procedure which is bound to asingle patient carried out by medical professionals, with thepurpose to treat the consequences of a health problem.6. The question whether IVF is in any way controversial in anethical, legal, social or political sense. The Board mentionsseveral examples of such controversial aspects of IVF, butleaves these aside.

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A REPORT FROM THE NETHERLANDS 3417. The question whether IVF is necessary because of freely

chosen, self-imposed health risks. According to the Board, thismay sometimes be the case, but the question cannot beunivocally answered and the issue is left aside.

8. The question whether the costs of IVF can be expected to beborne individually. This question is not addressed.

9. The question whether the financial constraints on the totalhealth care budget are such that interprogrammatic prioritiesare inevitable. The Board indicates that this should beestablished by assessing the relative severity of the disease, thedemand for the health care procedure, its cost-effectiveness,etc. It states that a national IVF programme would produceapproximately 500 live born babies, at the cost ofapproximately Dfl 10 million; i t then proceeds by comparingthese figures with similar figures on physiotherapy, hearingaids, abortion, heart-, renal- and bone-marrowtransplantation, dialysis, etc. However, the Board does notdraw any conclusions from these figures.

The Board summarises arguments for and against reimbursementAgainst reimbursement:-effectiveness of IVF is relatively low;-the costs per patient are relatively high;-there is no unanimity with respect to the question whether IVF

The Board adds that if the government should decide that IVF is nota basic health care service, the costs of other fertility treatmentsshould not be reimbursed either, strictly on pragmatic grounds.

Arguments in favour of reimbursement of the costs of IVF:-the data of the cost-effectiveness study;-the psychological burden of IVF to the patient is low;-other fertility treatments are currently being reimbursed;-access to IVF should not be dependent on an individuals

Surprisingly, then, the same argument (cost-effectiveness of IVF) isused both in favour and against reimbursement of the costs of IVF.Moreover, although several relevant decision criteria are mentionedin the report, only some of them are addressed by the Board.

More recently, the Governmental Committee on SettingPriorities in Health Care also addressed the issue of reimbursementof the costs of IVF. This Committee was established to advise the

of the costs of IVF.

is a health care procedure.

ability to pay.

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342 GERT JAN V A N DER WILTState Secretary of Health on the distinction between basic and non-basic health care services. Their report was launched in December1991 (the English translation followed in 1992).* To qualify asbasic care, the Committee proposes that health care services shouldmeet each of the following criteria: (i) it should be necessary fromthe perspective of the society; (ii) effectiveness and efficiency shouldhave been sufficiently established; and (iii) the costs cannot beexpected to be borne individually. O n the basis of the first criterion,the Committee concludes that IVF should not be considered as basiccare: the current prevalence of infertility in The Netherlands does inno way jeopardise the continuity of the society; moreover, unwantedchildlessness does not preclude normal participation in social life.Public responses to Proposals for limiting reimbursement of the costs o IVFThe Dutch Association of IVF, promoting the interests of patientsand partly subsidised by the Dutch pharmaceutical industry,challenges the views expressed by both committees. It states thatinfertility has such far-reaching consequences in the lives of thosewhom it concerns that it is extremely difficult, if not outrightimpossible, for them to reconcile themselves with their fate. TheAssociation states that often IVF is more effective and less costlythan surgery of the Fallopian tubes. It also states that, even if IVF isnot successful, it facilitates acceptance of infertility (the notion ofanticipated decision regret). In response to the report of theNational Medical Insurance Board, it states that the estimated needfor IVF is too low, that the reimbursement of maximally 3 IVFtreatments per couple is arbitrary, and that the criteria forreimbursement of the costs of IVF should be relaxed.

Newspapers paid due attention to a study by Van Balenlg (1991)of the psycho-social effects of unwanted childlessness.O The studyby Van Balen largely confirms the considerable potential impact ofinfertility. Data were obtained from questionnaires presented tocouples (108) who had, contrary to their wish, remained childless.To these couples, the bearing and raising of children is one of themost important things in life; it is considered as a major source ofhappiness and well-being. The results of the study suggest that Choices in Health Care: Report by the Government Committee on Choices in Health Care,The Netherlands, 1992.F. Van Balen, A Life Without Children. Unwanted Childlessness:

Perception, Stress and Adaptation (in Dutch: Een leven zonder kinderen.Ongewilde kinderloosheid: beleving, stress en aanpassing), 1991.* . Doornen, Many Childless Couples Keep Hoping for a Miracle,Volkskrant, 23.11.91 (in Dutch: Vele ongewild kinderloze echtparen blijven hopenop een wonder).

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A REPORT FROM THE NETHERLANDS 343infertility can be the cause of serious psychological problems(depression, anxiety, hostility); it can give rise to feelings ofinferiority, jealousy, defiance, to feelings of guilt and to sorrow.Infertility can undermine the individuals feeling of self-respect andcause somatic health problems. To some, parenthood also derives itsimportance because of its impact on social status and personalidentity.

Te Velde, a gynaecologist, disagrees with the conclusion of thereport on Setting Priorities in Health Care, which, according tohim, testifies of a gross underestimation of the problem ofinfertility.21However, he is critical as far as extended use of IVF isconcerned. He acknowledges the problems associated withinfertility; he denies, however, that IVF is always the solution ofchoice. His arguments for this are as follows. (1) Unwantedchildlessness and the resulting need for IVF are to a large extent dueto the fact that the mean age at which couples wish to have childrenhas increased during the past few years. (2) The reason why peoplechoose to have children at a later age is that at an earlier age awomans career opportunities can be seriously curtailed by thebearing and raising of children. (3) IVF involves considerable risk,both to the mother and the child; there is an increased probability ofmultiple and premature births, of perinatal mortality and of physicalor mental defects. According to Te Velde, it would be far better toprevent that a womans career opportunities are curtailed bybearing and raising children. The need to postpone motherhood andthe need for IVF, with all the risks associated to it, would thendisappear. The sort of measures that would be required is to increasecapacity of nurseries and kindergartens; in addition, a morerigorous breakdown of traditional role patterns is necessary.

2CIn The Netherlands, the first liver transplantations were performedin 1979. They were financed through the Fund for DevelopmentMedicine, which at the time was subsumed under the Ministry ofScience and Education. In 1983, this fund was brought under theresponsibility of the National Medical Insurance Board. From 1984onwards, the National Board has financed an LTx programme,gradually increasing from 15 to 50 transplantations per year.However, LTx was not considered as standard medical care and, as

Conzict over the public funding of liver transplantation

* I E. Te Velde, Where Will it Lead Us: Motherhood at an Age of Eighty?,NRC-Handelsblad, 31.10.1992 (in Dutch : W aar gaat het naar toe: Moeder wordenop je tachtigste?.0 Basil Blackwell Ltd. 1994

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344 GERT AN VAN DER WILTsuch, it was not included into the benefit package of the sick funds.In 1985 the National Board decided to finance an evaluation studyof the Dutch LTx programme which should produce data on severalaspects of LTx, notably on its cost-effectiveness for differentindications. These reports were completed in 1988.22On the basisof this study, the National Board brought out a report to the StateSecretary.23At the time, the Board held that it was too early toinclude LTx into the benefit package: too little was as yet knownabout effectiveness (especially long-term effects and quality of lifeafter LTx) and costs for the different indications. It was decided tocontinue the limited LTx programme on a provisional basis and thatthe evaluation study should be continued. This part of the CEA(Cost Effective Analysis) has now been completed.24 The studyrefers to 152 transplantations carried out between 1979 and 1990.On the basis of this study, the National Board concluded that cost-effectiveness of LTx had been sufficiently documented for a numberof specified indications, justifying inclusion of LTx into the benefitpackage.

The following data are presented - ffectiveness: the 5-yearactuarial survival rate is 60%I. Mortality is high immediately afterthe transplantation and during the first year after thetransplantation; after that, the probability of mortality decreases.Between 5 and 10 years after transplantation, no mortality or re-transplantation was observed. The prognosis of patients after livertransplantation depends on the cause of the liver failure; the bestresults are obtained in patients with primary biliary cirrhosis. Witha follow-up period of 12 years, an average gain in life expectancy of4.6 years was observed for these patients.There are three indications for which the benefits of LTx are stillquestionable: acute liver failure, alcoholic cirrhosis and hepatitis Bwith active viral replication. During the period to which theassessment applies, these indications were not included in the livertransplantation programme. The condition of the patients who didreceive a transplant was generally good; many of them regained the

l2 J.D.F. Habbema and G.J. Bonsel, Th e Costs and Effects of Liver Transplantation:A Study of the Dutch Liver Transplantation Programme Between 1977 and 1987,Rotterdam: Institute of Social Health Care and Department of Economics,Erasmus University, 1988 (in Dutch).23 National Medical Insurance Board (Nationale Ziekenfondsraad), Report on the

Financing o jLiver Transplantation (no. 548, 1992)." B.C. Michel, G.J. Bonsel, M.E.A. Stouthard, M. L. Essink-Bot,J . McDonnell and J.D.F. Habbema, Liver Transplantation: Effectiveness in the LongRun, Rotterdam: Institute of Social Health Care, Erasmus University, 1992 (in

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A REPORT FROM THE NETHERLANDS 345capacity of cycling, shopping, doing paid work and enjoying varioussports. Still, half of the patients experience physical limitations.Most of the patients have psychological problems (mostlydepression) related to the transplantation.

Costs: the costs of LTx vary between Dfl 287.000,- and Dfl351.000,- (time horizon of 10 years; margin of 10%). The savingsare Dfl 55.840,- per patient (discount rate of 5%). The costs perQuality Adjusted Life Year are between Dfl 69.000,- and Dfl84.000,- (time horizon of 10 years).

In view of the incidence rate of terminal liver failure among theDutch population and the criteria of eligibility for livertransplantation currently in use, the need for LTx is estimated toincrease to approximately 100 per year.Public responses to the government policy with respect to livertransplantationThe policy of the Dutch government seems to be especially directedtowards containment of the volume of the LTx programme. Onlyone transplantation centre is allowed and its performance isnarrowly controlled. The Health Council, another advisory board ofthe government, estimated in 1989 that two and, in the near future,perhaps even three liver transplantation centres would beappropriate to meet the need for this medical intervention. Surgeonsfrom the Rotterdam and Leiden University Hospitals havechallenged the estimates of need for LTx made by the g o ~ e r n m e n t . ~ ~(At the time when this article was revised forpublication, it was reported that the Dutch government has decided,contrary to its previous intentions, to licence a secondtransplantation centre at the University Hospital in Rotterdam.)

3 DISCUSSIONThe descriptive or explanatory value o Daniels accountAlthough far from conclusive, this review of the controversies overthe public funding of IVF, corrective surgery and livertransplantation suggests that Daniels model can at least partlyexplain these controversies. The reasons why the public funding ofthese services are controversial can, then, be further articulated asfollows: doubt with respect to the severity of the conditions (do theconditions curtail individuals fair share of the normal opportunity

25 State Secretary of H ealth Un derestimates Ne ed for Liver Transplantation,Vofkskrant, 16 . 1 . 93 (in Dutch: Simons miskent behoefte aanlevertransplantaties).0 a d Blackwell Ltd. 1994

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346 GERT JA N V A N DER WILTrange?); doubt with respect to effectiveness of health care services(do they maintain or restore opportunity ranges to a sufficientdegree?); and doubt with respect to the relation between costs andbenefits (does employment of public resources in these instancescontribute to fair equality of opportunity?).

The conflict over the public funding of cosmetic surgery focuseson the relative severity of the conditions. In the report of theNational Board, no explicit reference is made to the criterion ofimpact on opportunity. Still, it can be argued that the criterion ofimpact on opportunity is implied both by the criteria of the Boardsreport and by the counter-arguments. Generally speaking, the listprovided by the Board can be considered as conditions that causemore serious curtailments of an individuals range of opportunities.The arguments of the opponents can be held to entail that cosmeticsurgery, too, significantly restores an individuals fair share of thenormal opportunity range.

In the debate on the public funding of IVF, the argument fromopportunity can also be recognised. Ironically, the bearing andraising of children can be considered as an opportunity, but it can atthe same time preclude other opportunities (or at least reduce them).According to Te Velde, if we would prevent that the bearing andraising of children differentially affects the opportunity range ofwomen and men, this would contribute much more to the ideal offair equality of opportunity than increasing the facilities to haveaccess to IVF (reimbursement, pushing the age limit). Factualinformation plays an important role in this debate: success rates ofIVF, the nature and probabilities of adverse outcomes, etc. Theconflict over the public funding of IVF is to a substantial degreeabout the relative severity of unwanted childlessness: does it or doesit not constitute a curtailment of an individuals legitimate range ofopportunities? At the moment, the scale seems to tip towards publicrecognition of the severity of unwanted childlessness. However,there is also the question of effectiveness and safety forcefully putforward by T e Velde and his suggestion of alternative ways ofmeeting infertility. Together, these considerations render the publicfunding of TVF questionable.

In the case of LTx, the conflict seems to focus on the appropriatecapacity of the Dutch LTx programme. The appropriate capacitydepends on criteria of eligibility: which indications are deemedappropriate? The need for LTx is, of course, to a large extentdependent on the selection of patients for transplantation: age, HIVinfected, counter-indications, etc. These criteria of eligibility, inturn, depend on judgement about minimally required outcomes,acceptability of risk and acceptability of evidence. The National

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A REPORT FROM THE NETHERLANDS 347Medical Insurance Board put forward the argument of sufficientdocumentation; it stands to reason that this argument was deemedrelatively important in view of the relatively high costs of LTx perpatient. The issue here, then, seems to be primarily whether theseoutlays contribute to fair equality of opportunity, although this isnot explicitly mentioned. It can be inferred that End Stage LiverDisease is by all parties considered as a serious curtailment of anindividuals fair share of the normal opportunity range. Thisjustifies the high costs of this treatment, provided that effectivenessand safety have been sufficiently established. The high costs explainwhy rigorous standards are applied for demonstration of itseffectiveness.

If the foregoing is accepted, this would establish the descriptive orexplanatory value of Daniels account. It would mean that theprinciple of fair equality of opportunity reveals and articulates themoral concerns underlying the debate over the public funding ofhealth care services. Bringing this principle to bear on resourceallocation discussions should improve our understanding of theseunderlying moral concerns.

The prescrlptive value of Daniels accountAlthough the concept of fair equality of opportunity may underliethe debates about the public funding of cosmetic surgery, IVF andliver transplantation, one aspect is singularly missing in thesedebates: a comparative approach. Severity of the conditions is notcompared with other forms of impaired health (on the basis ofimpact on opportunity or otherwise), nor are effectiveness or costs ofhealth care procedures compared in these terms. Each case -corrective surgery, IVF and liver transplantation - s evaluated onits own, isolated from other evaluations of severity of disease,effectiveness of health care and justifiability of resourcecommitments. This is not confined to these cases, but issymptomatic for the current state-of-the-art of evaluation of healthtechnologies. However, nothing can be inferred from a general moralconcept like fair equality of opportunity unless we take into accountother instances classified by the concept. We are not capable ofadequately grasping the meaning of the concept of fair equality ofopportunity ourselves, or communicating it to others, withoutproviding instances (combinations of disease conditions, health careprocedures and their costs) that are classified by this concept. Fromthe provisionally established cases, instances that are hardlychallenged, the meaning of the concept and the conditions for itscorrect explication must be inferred. This information must be used0 Basil Blackwell Ltd. 1994

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348 GERT JAN VAN DER WILTto decide on novel and potentially controversial cases. This is theprocess of the explication of the moral concept, which is a process ofsocial bargaining. What is at stake is to try to reach agreement onthe correct explication of the concept. If public agreement isreached, the concept may largely have maintained its originalmeaning, or its meaning may have slightly altered. The currentdebate in The Netherlands about the public funding of health carecan be understood as an attempt to redefine the standards for thecorrect explication of the concept of fair equality of opportunity,thereby delimiting more strictly the public responsibility andconcern for health care.

Thus, the public debate on health care resource allocation mightbenefit from Daniels account in the following ways:

-it could contribute to a more consistent evaluation of therelative severity of disease conditions, effectiveness of healthcare procedures and the justifiability of employment of publicresources.

-it could help to locate the source of disagreement in complexdebates about the appropriateness of the public funding ofhealth care services: as the result of this complexity, the exactnature of disagreement is often obscured. People frequently failto - locate the problem and argue at cross purposes.Identification of the exact source of disagreement points to theappropriate way to proceed in order to try to resolve theconflict.

-it could help to establish which facts are relevant to considerwhen deciding on the public funding of health care: what is theimpact of the disease, the health care procedure and theresource employment on the ideal of fair equality ofopportunity?

-it could facilitate comparison between different health careservices: what are the paradigmatic cases and in what way dothe cases under consideration resemble or deviate in relevantways from these? This, then, would mean the introduction of amore casuistic approach which is alien to Daniels originalexposition. It starts by asking: what can we learn about ourmoral judgements from the fact that the public funding of IVF,corrective surgery and liver transplantation is controversial?What do these cases have in common and in what respect dothey differ from health care programmes where the publicfunding is not challenged?

It is often stated that there is no way of comparing the relativeseverity of different conditions such as end-stage liver disease,

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A REPORT FROM THE NETHERLANDS 349infertility and malformations that can be corrected by surgery.Similarly, there would be no way of assessing the relative utility ofthe different associated health care procedures. This is, however,question-begging. It stems from the failure to recognise that it is afunction of moral concepts to render single cases commensurable.Through these concepts, single cases can be classified and can becompared.

Thus, using Daniels account of justice in health care might helpto achieve a higher degree of consistency in this important area ofpublic decision-making, Formal justice, according to Heller, is theconsistent application of the same criteria to all of whom theyapply.26 It seems that, as yet, decision-making on the publicfunding of health care services in The Netherlands is still fairly farremoved from this ideal.

Adjustment ofDaniels accountIs there reason to adjust Daniels model in some respect on the basisof the nature of the actual debate on the public funding of healthcare? I find it difficult to answer that question. If we take theexample of IVF, there seems little reason not to reimburse the costsof IVF on the basis of the principle of fair equality of opportunity. Itis questionable, however, whether this principle takes into accountall the aspects that are considered relevant to this decision. Closelyrelated to the practice of IVF are techniques such as cloning ofhuman embryos, and the screening and selective abortion of theseembryos. In the early years of its application, the Dutch governmentargued that IVF did not qualify for public funding because it wascostly, ineffective and not a health care procedure at all. It is highlyquestionable whether these were the true arguments on which thegovernments decision was based. This suggests that Daniels modelalone cannot always explain why conflicts arise over the publicfunding of health care services. It remains to be established, then,how this concept is related to other moral concepts that also seem toinfluence our judgement concerning the public funding of healthcare services.Faculty ofMedical ScienceUniversity of Nijmegen, The Netherlands

26 Agnes Heller, BcyondJustice, Oxford: Blackwell, 1987.0 Basil Blackwell Ltd. 1994