Riorthm lSSN l)269-9702 Vohmc R Number 4 1994

A Report from The Netherlands

HEALTH CARE AND T H E PRINCIPLE OF FAIR EQUALITY OF OPPORTUNITY

~ ~~

GERT JAN VAN DER WILT

ABSTRACT
I n The Netherlands, the public funding of a number of health care services is controversial. What can we learn from this about the moral concerns that underlie these judgements? And, i f there is anything to learn, can we use this improved understanding to scrutinise the adequacy of particular decisions concerning the publicfunding o f health care services? I n the present paper, I will anahse three cases: corrective surgev, In Vitro Fertilisation and liver transplantation. I will summarise the arguments that have been used to support or to challenge the public funding of these services. I will then assess the merits of Daniels fair equality o f opportunity account of justice in health care. Can this account improve our understanding of the moral concerns unde+in<g our judgements about the public funding of these seruices? Can it serve to scrutinise the adequacy of particular decisions that are made concerning the publicfunding of health care services? My answer to both questions will be a qualified yes. Daniels account can provide guidance, but not because we can deductively infer from it what is right and what is wrong. Instead, I will argue for a more casuistic use o f the concept of fair equality o f opportunity. 1 INTRODUCTION Which health care services qualify for public funding and which do not? In the present report I will select one from the large variety of answers that have been put forth by moral philosophers: Daniels fair equality of opportunity account of justice in health care. I will discuss three areas in the Dutch health care system where the public
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funding of services has been particularly controversial: In Vitro Fertilisation, plastic surgery and liver transplantation. I will summarise the arguments provided by the National Medical Insurance Board to limit reimbursement of the costs of these services. This Board is an important permanent advisory committee of the Dutch government, with representatives from different social groups. I will also summarise some of the public responses, challenging these policy measures. I will then raise the question as to what extent Daniels model can give an adequate descriptive account of the controversy over public funding of these health care services in The Netherlands. What might we gain from such an enterprise? (1) I wish to explore whether our understanding of the moral concerns, underlying judgements about the public funding of health care services, can be improved by invoking Daniels account. (2) I wish to explore whether the decision-making process which precedes decisions on public funding of health care services can be improved by invoking Daniels account. (3) I wish to explore whether Daniels account of justice in health care can be supplemented or refined by testing it against actual judgements and arguments, used in the public debate about the public funding of health care services in The Netherlands. From this, it will be obvious that my problem (but not oniy mine) is that I do not have a fixed point of reference. It is by moving to and fro between theory and practice that I hope to contribute to the question of what it is that makes health care services the appropriate object of public responsibility and concern.

Proposals f o r health care r e f m in The Netherlands and Daniels account of justice As in many other countries, the issue of cost containment and justice in health care has stirred a discussion in The Netherlands about the distinction between health care as a public and as a private affair. The Dutch government has proposed to achieve containment of public expenditures to health care by introducing changes that are reminiscent of the US-managed care system. An important component of this intended change is the introduction of a twotiered health care system. Compulsory insurance is envisaged for basic health care services. Basic health care comprises procedures that meet a number of specified criteria, including, according to the recommendations of the Government Committee on Choices in Health Care (1992): the procedure should be necessary from the perspective of the community, it should be sufficiently effective and efficient, and its costs should be such that they cannot be reasonably
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expected to be borne individually. These criteria should delimit the public concern and responsibility for health care. The costs associated with utilisation of health care services that do not meet these requirements should be covered by voluntary complementary insurance or be paid out-of-pocket. So far, the criteria of the Government Committee have hardly been operationalised. The first of these criteria (that a health care service should be necessary from the perspective of the community) bears some resemblance to Daniels fair equality of opportunity principle, set forth in Just Health Care.2 Here, Daniels tries to offer an explanation why it is that most of us attach moral importance to many, but not all, instances of health care: 1. Health impairments often reduce an individuals fair share of the normal opportunity range; 2. health care procedures can, to various degrees, prevent this from happening, restore an individuals fair share of the normal range of opportunities, or compensate for deviations of an individuals fair share of the normal opportunity range; 3. fair equality of opportunity is an important and widely supported aspect of our sense of justice. Consequently, the capacity of health care to contribute to the ideal of fair equality of opportunity helps to explain why many, but not all, 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 of opportunities that is open to an individual as the result of ageing is acceptable. Thus, the presence of individuals in society with low ranges of opportunities open to them is not necessarily at variance with the requirements of the fair equality of opportunity account. In Daniels words, individual legitimate opportunities are qualified as follows: The normal opportunity range for a given society is the array of life plans reasonable persons in it are likely to construct for themselves. The normal range is thus dependent on key features of the society - its stage of historical development, its level of material wealth and technological development, and even important cultural facts about it (. . .) The share of the normal
Choices in Health Care: Report by the Government Committee on Choices in Health Care, The Netherlands, 1992. 2 N . Daniels, Just Health Care, Cambridge: Cambridge University Press, 1985.
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range open to an individual is also determined in afundamental way by his talents and skills. (. . .) impairment of normal functioning through disease and disability restricts an individuals f the normal range his skills and opportunity relative to that portion o talents would have made available to him were he h e ~ l t h y . ~ Clearly, what constitutes the normal range of opportunities for a given society, and what constitute individual fair shares thereof, are normative and socially negotiable judgements.* Opportunity can probably best be understood as a specific case of individual freedom, concerned primarily with the presence or absence of obstacles limiting what someone may do or have if he or she so w i ~ h e sTo . ~ increase opportunity is to diminish or eliminate the impact of such obstacles upon an individuals freedom. To ensure an opportunity, those obstacles must be superable by an agent. To equalise opportunity is to equalise the effect of given obstacles upon all relevant individuals who are by their freely willed actions in pursuit of equivalent sets of opportunities. In the context of health care, then, an individuals fair share of the normal opportunity range is reduced if someone, as the result of impaired health, cannot do something or have something through his or her own freely willed actions, whereas it is generally agreed that he or she should be capable of doing this, or having this, in view of his or her talents and skills, and in view of pursuits that are considered legitimate within the particular social context .6 An immediate consequence of Daniels account is that resource allocation decisions in health care have to rely on the following information: what difference does it make to individuals with impaired health to have access to a collectively funded, specified health service, and not having access to it?7 This will to a large extent be determined by the following, related factors:
Just Health Cure, pp. 33 and 34; Daniels emphases; page numbers refer to the 1988 edition. Daniels tries to objectify impact on opportunity by relating it to Christopher Boorses concept of normal species typical, age- and sex-adjusted structure and function. In this paper, instead of trying to anchor the concept of equality of opportunity to objectively ascertainable deviations of structure and function, emphasis will be on reaching intersubjective agreement on the relevance and meaning of the concept in the context of health care. 5S.J.D.Green, Competitive Equality of Opportunity: A Defence, Ethics 100, 1989, pp. 5-32. 60pportunity can also be reduced if someone cannot but 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 no collective resources are allocated to finance a particular health care service, or

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- The impact of the health impairment itself what is the natural

disease history and what is the general prognosis of these individuals in the absence of the specified medical interventions? - The impact of the specified health care procedure: to what extent is it capable of preventing (further) reduction of an individuals fair share of the normal opportunity range, restore it, or compensate for reduced opportunity? - The 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 care services and the individuals resources. Clearly, these aspects may vary among different individuals and, therefore, the difference between having access to collectively funded services and not having access to them is at least partly contextually dependent. To make some generalisations, we have to abstract from such individual differences and determine whether it is still possible to obtain meaningful information about the impact of health impairments and the utilisation of collectively funded health care services. In the following, I will present an example of assessing severity of disease and effectiveness of health care procedure: the case of diabetes (type I) and insulin. We should ask, then:

- is someone who is afflicted with diabetes likely to experience a

reduction of his or her range of opportunities, (i) as the result of 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 that makes life worthwhile living. - if 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 by diabetes (type I) a group of patients is sufficiently clearly defined, and whether this group is sufficiently homogeneous: what is the mean age of onset of the disease, what is the general prognosis? Are possible medical interventions sufficiently effective and are they
collective resources are allocated but criteria of eligibility restrict access to only part of the individuals who might benefit from utilisation of the service. To my knowledge, the former occurs rarely if at all, whereas the latter is a relatively common phenomenon in The Netherlands (criteria for reimbursement of costs associated with utilisation of pre-natal diagnosis, transplantation, screening, in vifro fertilisation, cosmetic surgery, etc.).
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equally effective in each case? If we feel that the group of diabetes patients is not sufficiently homogeneous to answer these questions, we may wish to differentiate between different sub-groups. If, as is likely in this particular case, we consider that diabetes generally tends to reduce opportunity, and that medical interventions exist that can effectively prevent this from happening, we should conclude from this that the costs that are associated with this type of health care provision should in principle be borne collectively. I have to add in principle, since impact on opportunity of health impairment and medical interventions are necessary, but not sufficient, conditions for collective funding. For, in addition, we have to assess whether the collective funding of these services contributes to the ideal of equality of opportunity. The required resource employment may be such that it precludes maintenance or restoration of fair shares of the normal range of opportunities of large numbers of other individuals. This occurs if (1) resources are limited, and (2) resources have alternative modes of employment, each contributing in a specific way to the objective of fair equality of opportunity. Both conditions hold in health care. This issue is discussed by Daniels when addressing the question whether the fair equality of opportunity account requires the public funding of heart transplants: Clearly the transplants count as meeting a medical need, indeed one that is important given the impact of organ failure on the individuals share of the normal opportunity range. Still, the importance of meeting the need must be assessed from the perspective of a system which protects fair equality of opportunity in many contexts and in the light of resource scarcity. From this broader perspective, the theory might suggest that intensifying the acute-care bias of the US health care system fails to protect f resources would. Many other equal opportunity as well as other uses o services - personal care, preventive, and other help for the disabled or mentally ill - might be f a r more efectzve and ejjicient ways ofprotecting the normal opportunily range for a much larger class of people. Thus, to qualify for public funding, the following conditions should be met: a disease condition should generally curtail the individuals fair share of the normal opportunity range, the health care procedure should prevent this from happening, restore the normal opportunity range to a sufficient degree or effectively compensate for reduced opportunity, and the costs should be in
aJusl Health Care, p. 226; my emphases.
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reasonable proportion to the expected benefits. Although it is important to make criteria like these explicit, it is only the beginning. It is important because it allows to establish whether agreement can be achieved on the adequacy of these criteria and their relevance to this particular context. It is only the beginning since it remains to be established which health impairments are considered to curtail individuals opportunity ranges, which health care services are considered to counteract this sufficiently, and which public outlays in health care are considered to contribute to the ideal of fair equality of opportunity. It remains to be established whether the principle is sufficiently meaningful to all parties involved, whether it appeals to a certain sense of justice which is, through the principle, further articulated, and whether we are capable of achieving a sufficient degree of consistency in applying the principle. A problem is that judging the adequacy and relevance of the principle strongly depends on these aspects. The proof of the pudding is in eating it. My point is that too little effort is devoted to this phase: testing the adequacy of principles against the background of actual judgements and arguments put forward in the public debate and u.u.: testing the adequacy and consistency of these judgements and arguments against the background of a principled account of justice. In the following, debates in The Netherlands about the public funding of a selected number of health care procedures will be analysed in terms of Daniels model.

2 FAIR EQUALITY OF OPPORTUNITY AND T H E DUTCH HEALTH CARE SYSTEM

Examples of health care services where the appropriateness of public funding has been challenged in the last few years in The Netherlands include: psychotherapy, physiotherapy, In Vitro Fertilisation (IVF), heart-lung transplantation, liver transplantation, corrective surgeryg and sex change. I will discuss IVF, liver transplantation and corrective surgery in more detail. Of these, liver transplantation has been recently included into the benefit package of the sick funds; the costs of corrective surgery are reimbursed, except when surgery serves a purely aesthetic purpose; IVF is not included into the benefit package, but the costs are usually reimbursed on the basis of a provisional arrangement. In the following, the proposed reimbursement policies, the arguments and the public responses will be discussed. I will summarise the recommendations of the National
9 I use the term corrective surgery as it is discussed on p. 338.
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Medical Insurance Board, which in each case have been taken on by the government. lo

2A

Conflicts over the public funding

of plastic surgery

In 1990, the National Medical Insurance Board brought out an advice to the State Secretary of Health on reimbursement of the costs of plastic surgery." Its aim was to change the reimbursement conditions, dating from 1980. In that year, an arrangement had come into effect which, for reasons mentioned below, was judged unsatisfactory. The arrangement from 1980 had as a result that at least half of the costs, and in some cases all of the costs, of plastic surgery were reimbursed by the sick funds. It was partly enacted to achieve a reduction of health care costs. It appears, however, that the number of plastic surgeries kept increasing at the same rate before and after its enactment. This warrants the conclusion that the 1980 policy measure was, in this sense, ineffective. In the following I will briefly outline the arrangement during 1980 to 1990, and then summarise the proposals for change.
Arrangement for reimbursement of the costs o f plastic surgery3om 1980 to 1990 During this period, the costs of all forms of plastic surgery were at least partly covered by the sick funds. The patients had to pay half of the costs out-of-pocket, up to a certain maximum (Dfl 3.800,- per year).'* However, costs of plastic surgery werefully covered by the Sick Fund if one of the following conditions held:

1. Plastic surgery was carried out to correct a bodily imperfection which was beyond the normal variation of outward appearances; 2. plastic surgery was carried out to correct a bodily dysfunction; 3. plastic surgery was carried out to prevent or reduce substantial psychological suffering. To advise the regional sick funds on the interpretation of the first criterion, a national committee was established. The task of this
The National Medical Insurance Board (de Nationale Ziekenfondsraad) controls all the local sick funds; the local sick funds are involved in implementation of the law regulating compulsory medical insurance. The Board also acts as an advisory committee to the government. It consists of representatives of employers' organisations, trade unions, local sick funds and health care providers, and of a number of independent members appointed by the government. If National Medical Insurance Board (de Nationale Ziekenfondsraad): report on plastic surgery (report no. 493). 1 Dfl = 0.53 US$ and 0.46 ECU.
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committee was to reduce regional inequity in decisions of reimbursement of costs associated with correction of outward appearances 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 arrangement It frequently occurred that the judgement of local sick funds, requiring that individual patients should bear half of the costs of plastic surgery, was challenged by patients and plastic surgeons. The difference of opinion was about the question whether a particular bodily imperfection was beyond the normal variation of outward appearances (the first criterion). These cases were presented to the national committee. According to the report, however, it repeatedly happened that the dispute could not be settled in 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 third criterion, however, had again presented some ambiguities. According to this criterion, no co-payments are required if plastic surgery is carried out to prevent or reduce substantial psychological suffering. The reasoning behind this criterion was that complete coverage of plastic surgery is justified, if it helps to prevent the incurring of (probably higher) future costs to the sick funds. Thus, the situation should be one of a choice between bearing the costs of plastic surgery now, or bearing the costs of, for instance, psychotherapy in the future. T o qualify for complete coverage, it had to be made sufficiently plausible that (1) bodily imperfections, within the normal range of variation, are the only or at least the major cause of (future) severe psychological suffering, (2) the resulting psychological suffering will incur costs to the sick funds, and (3) plastic surgery will prevent (1) and, therefore, (2). An indication of the severity of psychological suffering was recommended by the presence or risk of psychological disorders such as phobias, neuroses, depressions and psychoses, in combination with symptoms such as social isolation or risk of suicide.

I The criterion, whether plastic surgery is carried out to correct a bodily imperfection which is beyond the normal variation of outward appearances, fits with Boorses concept of health and disease: it is an attempt to define normality in a statistical sense. It is ironic that particularly this criterion, which aims at objectivity, was considered unsatisfactory because its interpretation was too subjective.

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Recommendationsfor change In view of the problems, discussed above, the National Medical Insurance Board has recommended to delimit more strictly the entitlements of patients. Generally, the costs of corrective surgery should be reimbursed in cases of medical need only, and not if it is carried out for aesthetic reasons. Specifically, the Board has proposed that the costs of plastic surgery should be fully reimbursed in those cases where it is aimed at correction of

1. deviations in outward appearances which are associated with objectively demonstrable bodily dysfunctions (correction of the nose if breathing is impaired; correction of the breasts if they impede physical activities); 2. mutilations which are the result of disease, accident or medical intervention (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 causes objectively demonstrable impairment of sight; 4. certain congenital malformations: cleft-palate, -lip and -jaw; malformations of the bony face; protruding ears; benign growth 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 such psychological suffering that the patients mental health is severely and permanently impaired, and where correction of the deviation is sufficiently likely to relieve the psychological suffering.
Not covered are the costs of correction of skin creases which result from slimming, tattoos, male baldness, face lifts, small breasts, fat rolls, etc. The Board states that if the costs of plastic surgery are confined to the cases listed above, there is no need for a national committee, nor are co-payments required: either the costs are fully reimbursed, or not at all. The Board expects that the proposed changes will result in cost savings (up to Dfl 25 million per year).

Public responses to the proposed change The policy measure implied that the costs of aesthetic surgery were no longer covered by the sick funds, whereas these used to be covered either for 50% or for 100% (if the surgery was performed to correct an outward appearance which was outside the normal range of variation). According to some, this was unjustified. Their arguments were that
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cosmetic surgery is not a luxury: cosmetic surgery is frequently an absolute requirement to maintain or restore a balance between an individual and his or her social environment. l 4 Another opponent put it like this: cosmetic surgery has primarily to do with the wish to alter the image an individual has of his- or her-self in a context where very little else can be changed. In other words, it involves an individuals identity.l5

2B ConJicts

over

the public funding o f In Vitro Fertilisation

From 1980 onwards, local sick funds were increasingly approached by insurees, demanding reimbursement of the costs associated with In Vitro Fertilisation (IVF). At this time, the local sick funds refused to fund IVF. Their argument for this was that IVF was still an experimental procedure which could not qualify as common practice. In 1986 the National Medical Insurance Board advised the State Secretary of Health to refund 1600 IVF treatments during per treatment, to be performed a period of two years, at Dfl4500,in five different hospitals. These IVF treatments should serve as the basis for an evaluative study of IVF. Specifically, it should establish the cost-effectiveness of IVF and the expected demand for IVF. The evaluation study was completed in January 1989.16The National Board used the data of this report to assess whether the costs of IVF should be reimbursed. The report of the Board on this subject was brought out in March 1989. This report is interesting but at the same time disappointing. It is interesting because the criteria that are considered relevant to decide on reimbursement of IVF are explicitly mentioned. It is disappointing because, in spite of the explicitation of these criteria and the availability of factual information from the evaluation study, the Board does not reach a definite conclusion. It recommends that provisionally the costs of IVF should be reimbursed (adding a number of restrictions and qualifications). However, it also states that, in the long run, it is conceivable that IVF will not qualify as basic care. As such it should not be included into the basic benefit package and the costs should be 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 (in Dutch: Eoaluatie uan In- Vitro-Fcrtilisntic), University of Limburg, Department of Health Economics, 1989. National Medical Insurance Board (Nationale Ziekenfondsraad): report on IVF (no. 442, 1989).

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comprehensive change of the Dutch health care system which is now gradually taking place. The Board did not wish to run ahead of this development. At this moment, no decision has as yet been made by the Government whether IVF should qualify as basic care. In the following I will discuss the decision criteria mentioned in the Boards report on IVF.

Decision criteria In the report on IVF, the Board mentions the following criteria that can be of use when assessing whether the costs of IVF should be reimbursed by the sick fund:
1. Effectiveness of IVF for different indications. Effectiveness of IVF is expressed as the number of live born children as a fraction of the total number of IVF treatments (approximately 1 out of 10). With a maximum of 3 IVF treatments per couple, and careful selection of candidates, birth of a live child can be reached in approximately 1 out of 3 couples. The probability of adverse outcomes is acknowledged. 2. The question whether IVF can be considered as common practice: whether the intended benefits and the safety of the procedure have been sufficiently documented. The Board does not address this question. 3 . Cost-effectiveness of IVF for different indications. There are several factors that influence cost-effectiveness of IVF. The Board recommends that a maximum of 3 treatments per couple should be reimbursed; in that case, the average costs of each pregnancy which is brought to term is approximately Dfl 25.000,-. Note that here, only intraprogrammatic comparisons are made. 4. The question of substitution: are there any equivalent health care services that are less costly (e.g. surgical operation of the Fallopian tubes)? This question is not further addressed by the Board. 5. The question whether IVF can be qualified as a health care procedure. According to the Board, IVF is indeed a health care procedure (but see below): it is a procedure which is bound to a single patient carried out by medical professionals, with the purpose to treat the consequences of a health problem. 6. The question whether IVF is in any way controversial in an ethical, legal, social or political sense. The Board mentions several examples of such controversial aspects of IVF, but leaves these aside.
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7. The question whether IVF is necessary because of freely

chosen, self-imposed health risks. According to the Board, this may sometimes be the case, but the question cannot be univocally answered and the issue is left aside. 8. The question whether the costs of IVF can be expected to be borne individually. This question is not addressed. 9. The question whether the financial constraints on the total health care budget are such that interprogrammatic priorities are inevitable. The Board indicates that this should be established by assessing the relative severity of the disease, the demand for the health care procedure, its cost-effectiveness, etc. It states that a national IVF programme would produce approximately 500 live born babies, at the cost of approximately Dfl 10 million; it then proceeds by comparing these figures with similar figures on physiotherapy, hearing aids, abortion, heart-, renaland bone-marrow transplantation, dialysis, etc. However, the Board does not draw any conclusions from these figures. The Board summarises arguments for and against reimbursement of the costs of IVF. Against 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 is a health care procedure. The Board adds that if the government should decide that IVF is not a basic health care service, the costs of other fertility treatments should 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 ability to pay. Surprisingly, then, the same argument (cost-effectiveness of IVF) is used both in favour and against reimbursement of the costs of IVF. Moreover, although several relevant decision criteria are mentioned in the report, only some of them are addressed by the Board. More recently, the Governmental Committee on Setting Priorities in Health Care also addressed the issue of reimbursement of the costs of IVF. This Committee was established to advise the
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State Secretary of Health on the distinction between basic and nonbasic health care services. Their report was launched in December 1991 (the English translation followed in 1992).* To qualify as basic care, the Committee proposes that health care services should meet each of the following criteria: (i) it should be necessary from the perspective of the society; (ii) effectiveness and efficiency should have been sufficiently established; and (iii) the costs cannot be expected to be borne individually. On the basis of the first criterion, the Committee concludes that IVF should not be considered as basic care: the current prevalence of infertility in The Netherlands does in no way jeopardise the continuity of the society; moreover, unwanted childlessness does not preclude normal participation in social life.

Public responses to Proposals for limiting reimbursement of the costs o f IVF The Dutch Association of IVF, promoting the interests of patients and partly subsidised by the Dutch pharmaceutical industry, challenges the views expressed by both committees. It states that infertility has such far-reaching consequences in the lives of those whom it concerns that it is extremely difficult, if not outright impossible, for them to reconcile themselves with their fate. The Association states that often IVF is more effective and less costly than surgery of the Fallopian tubes. It also states that, even if IVF is not successful, it facilitates acceptance of infertility (the notion of anticipated decision regret). In response to the report of the National Medical Insurance Board, it states that the estimated need for IVF is too low, that the reimbursement of maximally 3 IVF treatments per couple is arbitrary, and that the criteria for reimbursement 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 study by Van Balen largely confirms the considerable potential impact of infertility. Data were obtained from questionnaires presented to couples (108) who had, contrary to their wish, remained childless. To these couples, the bearing and raising of children is one of the most important things in life; it is considered as a major source of happiness 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. J. Doornen, Many Childless Couples Keep Hoping for a Miracle, Volkskrant, 23.11.91 (in Dutch: Vele ongewild kinderloze echtparen blijven hopen op een wonder).

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infertility can be the cause of serious psychological problems (depression, anxiety, hostility); it can give rise to feelings of inferiority, jealousy, defiance, to feelings of guilt and to sorrow. Infertility can undermine the individuals feeling of self-respect and cause somatic health problems. To some, parenthood also derives its importance because of its impact on social status and personal identity. Te Velde, a gynaecologist, disagrees with the conclusion of the report on Setting Priorities in Health Care, which, according to him, testifies of a gross underestimation of the problem of infertility.21However, he is critical as far as extended use of IVF is concerned. He acknowledges the problems associated with infertility; he denies, however, that IVF is always the solution of choice. His arguments for this are as follows. (1) Unwanted childlessness and the resulting need for IVF are to a large extent due to the fact that the mean age at which couples wish to have children has increased during the past few years. (2) The reason why people choose to have children at a later age is that at an earlier age a womans career opportunities can be seriously curtailed by the bearing and raising of children. (3) IVF involves considerable risk, both to the mother and the child; there is an increased probability of multiple and premature births, of perinatal mortality and of physical or mental defects. According to Te Velde, it would be far better to prevent that a womans career opportunities are curtailed by bearing and raising children. The need to postpone motherhood and the need for IVF, with all the risks associated to it, would then disappear. The sort of measures that would be required is to increase capacity of nurseries and kindergartens; in addition, a more rigorous breakdown of traditional role patterns is necessary.
2C

Conzict over the public funding

of liver transplantation

In The Netherlands, the first liver transplantations were performed in 1979. They were financed through the Fund for Development Medicine, which at the time was subsumed under the Ministry of Science and Education. In 1983, this fund was brought under the responsibility of the National Medical Insurance Board. From 1984 onwards, 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
*I E. Te Velde, Where Will it Lead Us: Motherhood at an Age of Eighty?, NRC-Handelsblad, 31.10.1992 (in Dutch: Waar gaat het naar toe: Moeder worden op je tachtigste?.

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such, it was not included into the benefit package of the sick funds. In 1985 the National Board decided to finance an evaluation study of the Dutch LTx programme which should produce data on several aspects of LTx, notably on its cost-effectiveness for different indications. These reports were completed in 1988.22O n the basis of this study, the National Board brought out a report to the State Secretary.23At the time, the Board held that it was too early to include LTx into the benefit package: too little was as yet known about effectiveness (especially long-term effects and quality of life after LTx) and costs for the different indications. It was decided to continue the limited LTx programme on a provisional basis and that the evaluation study should be continued. This part of the CEA (Cost Effective Analysis) has now been completed.24 The study refers to 152 transplantations carried out between 1979 and 1990. O n the basis of this study, the National Board concluded that costeffectiveness of LTx had been sufficiently documented for a number of specified indications, justifying inclusion of LTx into the benefit package. The following data are presented - effectiveness: the 5-year actuarial survival rate is 60 %I. Mortality is high immediately after the transplantation and during the first year after the transplantation; after that, the probability of mortality decreases. Between 5 and 10 years after transplantation, no mortality or retransplantation was observed. The prognosis of patients after liver transplantation depends on the cause of the liver failure; the best results are obtained in patients with primary biliary cirrhosis. With a follow-up period of 12 years, an average gain in life expectancy of 4.6 years was observed for these patients. There are three indications for which the benefits of LTx are still questionable: acute liver failure, alcoholic cirrhosis and hepatitis B with active viral replication. During the period to which the assessment applies, these indications were not included in the liver transplantation programme. The condition of the patients who did receive a transplant was generally good; many of them regained the
l2 J.D.F. Habbema and G.J. Bonsel, The Costs and Effects o f Liver Transplantation: A Study o f 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 j Liver 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 Long Run, Rotterdam: Institute of Social Health Care, Erasmus University, 1992 (in Dutch).

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capacity of cycling, shopping, doing paid work and enjoying various sports. Still, half of the patients experience physical limitations. Most of the patients have psychological problems (mostly depression) related to the transplantation. Costs: the costs of LTx vary between Dfl 287.000,- and Dfl 351.000,- (time horizon of 10 years; margin of 10%). The savings are Dfl 55.840,- per patient (discount rate of 5%). The costs per Quality Adjusted Life Year are between Dfl 69.000,- and Dfl 84.000,- (time horizon of 10 years). In view of the incidence rate of terminal liver failure among the Dutch population and the criteria of eligibility for liver transplantation currently in use, the need for LTx is estimated to increase to approximately 100 per year.
Public responses to the government policy with respect to liver transplantation The policy of the Dutch government seems to be especially directed towards containment of the volume of the LTx programme. Only one transplantation centre is allowed and its performance is narrowly controlled. The Health Council, another advisory board of the government, estimated in 1989 that two and, in the near future, perhaps even three liver transplantation centres would be appropriate to meet the need for this medical intervention. Surgeons from the Rotterdam and Leiden University Hospitals have challenged 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 for publication, it was reported that the Dutch government has decided, contrary to its previous intentions, to licence a second transplantation centre at the University Hospital in Rotterdam.)

DISCUSSION

The descriptive or explanatory value o f Daniels account

Although far from conclusive, this review of the controversies over the public funding of IVF, corrective surgery and liver transplantation suggests that Daniels model can at least partly explain these controversies. The reasons why the public funding of these services are controversial can, then, be further articulated as follows: doubt with respect to the severity of the conditions (do the conditions curtail individuals fair share of the normal opportunity
State Secretary of Health Underestimates Need for Liver Transplantation, 16.1.93 (in Dutch: Simons miskent behoefte aan levertransplantaties).
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Vofkskrant,

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range?); doubt with respect to effectiveness of health care services (do they maintain or restore opportunity ranges to a sufficient degree?); and doubt with respect to the relation between costs and benefits (does employment of public resources in these instances contribute to fair equality of opportunity?). The conflict over the public funding of cosmetic surgery focuses on the relative severity of the conditions. In the report of the National Board, no explicit reference is made to the criterion of impact on opportunity. Still, it can be argued that the criterion of impact on opportunity is implied both by the criteria of the Boards report and by the counter-arguments. Generally speaking, the list provided by the Board can be considered as conditions that cause more serious curtailments of an individuals range of opportunities. The arguments of the opponents can be held to entail that cosmetic surgery, too, significantly restores an individuals fair share of the normal opportunity range. In the debate on the public funding of IVF, the argument from opportunity can also be recognised. Ironically, the bearing and raising of children can be considered as an opportunity, but it can at the same time preclude other opportunities (or at least reduce them). According to T e Velde, if we would prevent that the bearing and raising of children differentially affects the opportunity range of women and men, this would contribute much more to the ideal of fair equality of opportunity than increasing the facilities to have access to IVF (reimbursement, pushing the age limit). Factual information plays an important role in this debate: success rates of IVF, the nature and probabilities of adverse outcomes, etc. The conflict over the public funding of IVF is to a substantial degree about the relative severity of unwanted childlessness: does it or does it not constitute a curtailment of an individuals legitimate range of opportunities? At the moment, the scale seems to tip towards public recognition of the severity of unwanted childlessness. However, there is also the question of effectiveness and safety forcefully put forward by T e Velde and his suggestion of alternative ways of meeting infertility. Together, these considerations render the public funding of TVF questionable. In the case of LTx, the conflict seems to focus on the appropriate capacity of the Dutch LTx programme. The appropriate capacity depends on criteria of eligibility: which indications are deemed appropriate? The need for LTx is, of course, to a large extent dependent on the selection of patients for transplantation: age, HIV infected, counter-indications, etc. These criteria of eligibility, in turn, depend on judgement about minimally required outcomes, acceptability of risk and acceptability of evidence. The National
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Medical Insurance Board put forward the argument of sufficient documentation; it stands to reason that this argument was deemed relatively important in view of the relatively high costs of LTx per patient. The issue here, then, seems to be primarily whether these outlays contribute to fair equality of opportunity, although this is not explicitly mentioned. It can be inferred that End Stage Liver Disease is by all parties considered as a serious curtailment of an individuals fair share of the normal opportunity range. This justifies the high costs of this treatment, provided that effectiveness and safety have been sufficiently established. The high costs explain why rigorous standards are applied for demonstration of its effectiveness. If the foregoing is accepted, this would establish the descriptive or explanatory value of Daniels account. It would mean that the principle of fair equality of opportunity reveals and articulates the moral concerns underlying the debate over the public funding of health care services. Bringing this principle to bear on resource allocation discussions should improve our understanding of these underlying moral concerns.

The prescrlptive value o f Daniels account

Although the concept of fair equality of opportunity may underlie the debates about the public funding of cosmetic surgery, IVF and liver transplantation, one aspect is singularly missing in these debates: a comparative approach. Severity of the conditions is not compared with other forms of impaired health (on the basis of impact on opportunity or otherwise), nor are effectiveness or costs of health care procedures compared in these terms. Each case corrective surgery, IVF and liver transplantation - is evaluated on its own, isolated from other evaluations of severity of disease, effectiveness of health care and justifiability of resource commitments. This is not confined to these cases, but is symptomatic for the current state-of-the-art of evaluation of health technologies. However, nothing can be inferred from a general moral concept like fair equality of opportunity unless we take into account other instances classified by the concept. We are not capable of adequately grasping the meaning of the concept of fair equality of opportunity ourselves, or communicating it to others, without providing instances (combinations of disease conditions, health care procedures and their costs) that are classified by this concept. From the provisionally established cases, instances that are hardly challenged, the meaning of the concept and the conditions for its correct explication must be inferred. This information must be used
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to decide on novel and potentially controversial cases. This is the process of the explication of the moral concept, which is a process of social bargaining. What is at stake is to try to reach agreement on the correct explication of the concept. If public agreement is reached, the concept may largely have maintained its original meaning, or its meaning may have slightly altered. The current debate in The Netherlands about the public funding of health care can be understood as an attempt to redefine the standards for the correct explication of the concept of fair equality of opportunity, thereby delimiting more strictly the public responsibility and concern for health care. Thus, the public debate on health care resource allocation might benefit from Daniels account in the following ways: -it could contribute to a more consistent evaluation of the relative severity of disease conditions, effectiveness of health care procedures and the justifiability of employment of public resources. -it could help to locate the source of disagreement in complex debates about the appropriateness of the public funding of health care services: as the result of this complexity, the exact nature of disagreement is often obscured. People frequently fail to - locate the problem and argue at cross purposes. Identification of the exact source of disagreement points to the appropriate way to proceed in order to try to resolve the conflict. -it could help to establish which facts are relevant to consider when deciding on the public funding of health care: what is the impact of the disease, the health care procedure and the resource employment on the ideal of fair equality of opportunity? -it could facilitate comparison between different health care services: what are the paradigmatic cases and in what way do the cases under consideration resemble or deviate in relevant ways from these? This, then, would mean the introduction of a more casuistic approach which is alien to Daniels original exposition. It starts by asking: what can we learn about our moral 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 do they differ from health care programmes where the public funding is not challenged?

It is often stated that there is no way of comparing the relative severity of different conditions such as end-stage liver disease,
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infertility and malformations that can be corrected by surgery. Similarly, there would be no way of assessing the relative utility of the different associated health care procedures. This is, however, question-begging. It stems from the failure to recognise that it is a function of moral concepts to render single cases commensurable. Through these concepts, single cases can be classified and can be compared. Thus, using Daniels account of justice in health care might help to achieve a higher degree of consistency in this important area of public decision-making, Formal justice, according to Heller, is the consistent application of the same criteria to all of whom they apply.26 It seems that, as yet, decision-making on the public funding of health care services in The Netherlands is still fairly far removed from this ideal.

Adjustment

of Daniels account

Is there reason to adjust Daniels model in some respect on the basis of the nature of the actual debate on the public funding of health care? I find it difficult to answer that question. If we take the example of IVF, there seems little reason not to reimburse the costs of IVF on the basis of the principle of fair equality of opportunity. It is questionable, however, whether this principle takes into account all the aspects that are considered relevant to this decision. Closely related to the practice of IVF are techniques such as cloning of human embryos, and the screening and selective abortion of these embryos. In the early years of its application, the Dutch government argued that IVF did not qualify for public funding because it was costly, ineffective and not a health care procedure at all. It is highly questionable whether these were the true arguments on which the governments decision was based. This suggests that Daniels model alone cannot always explain why conflicts arise over the public funding of health care services. It remains to be established, then, how this concept is related to other moral concepts that also seem to influence our judgement concerning the public funding of health care services.

Faculty of Medical Science University o f Nijmegen, The Netherlands

26

Agnes Heller, BcyondJustice, Oxford: Blackwell, 1987.

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