Towards Better Choices in Care

Abstract

In the previous chapter we noted that the way choices are made in health and social care in the Netherlands, and thus the results of those choices, is not always ideal. Greater health gains could probably be achieved by deploying people and resources more effectively than is currently the case. The quality and accessibility of care could also be better assured, especially for vulnerable groups. Where limits are imposed upon the growth of care, this is not always done in the most prudent way. We also discussed five impediments to good choices and distribution in care.

To make better choices about health and social care, we need to find sensible ways to overcome psychological barriers, conflicts of interest, design issues, short-term thinking and legitimacy concerns.

In the previous chapter we noted that the way choices are made in health and social care in the Netherlands, and thus the results of those choices, is not always ideal. Greater health gains could probably be achieved by deploying people and resources more effectively than is currently the case. The quality and accessibility of care could also be better assured, especially for vulnerable groups. Where limits are imposed upon the growth of care, this is not always done in the most prudent way. We also discussed five impediments to good choices and distribution in care.

In this chapter we approach the question of why such choices are so difficult from various angles. And perhaps even more importantly, we ask why drawing boundaries is so difficult. We adopt psychological, institutional, social and political perspectives, look at the timing of choices and identify barriers to better ones. In doing so we present illustrative examples; these are drawn from curative medicine because that is where the most research is available, but the points they highlight apply in a general sense to all fields of care. And in some cases also to the trade-off between care and other domains.

One central theme to recur implicitly in all our perspectives is the notion of legitimacy. Prioritization in healthcare can only be successful if it is undertaken in a legitimate way, with broad public support. Otherwise, the choices made are not socially tenable and, one way or another, will eventually be reversed or subverted. There is even a risk that they could undermine public backing for the system more generally. After all, it is not inconceivable that boundaries set too strictly might be regarded as unjust, callous even, and so damage public confidence and hence the societal sustainability of care. At the same time, though, the WRR views well-considered prioritization as an effective way of guaranteeing sustainability. Without clear choices, after all, the tide is sure to turn: the limits of staffing and financial sustainability will be reached and the quality and accessibility of ever larger swathes of the care system will come under unacceptable pressure as a result of displacement. In the long run, this too will be detrimental to societal sustainability. To a large extent this is also a problem of social expectations—there seems to be a clear disjunction between people’s presumption that the sector can continue to grow at current rates and the adverse consequences, for care and for other domains, of the displacement that growth inevitably entails.

So there is a dilemma here too: limits have to be imposed upon growth, by making better choices, but this needs to be done in such a way that self-imposed constraints are not more damaging to public support than the absolute financial and staffing limits they seek to forestall. Before exploring this challenge, we look first at choices and limits in care from a number of different perspectives (Fig. 8.1). For the sake of clarity we treat each of these separately, but in practice they build upon and reinforce each other and the insights they deliver should not considered in isolation.

Fig. 8.1

Five perspectives on making choices about care

8.1 The Psychological Perspective

We look first at the psychological perspective. Making choices in health and social care and imposing limits on the sector’s growth is almost bound to encounter public resistance. In part, this can be explained psychologically. We focus here upon two relevant phenomena in this regard: “taboo trade-offs” and “statistical lives”.

8.1.1 Health as a “Sacred Value”

The American psychologist and political scientist Philip Tetlock explains why choices in sectors like care are so controversial by stating that health and life are so-called “sacred values”.¹ Meaning that people consider them so essential that they cannot be traded off against other values and goals. Other sacred values include love, honour and justice. On the other side of the coin are less essential “secular values”—money being a classic example. If a sacred value has to be weighed directly against a secular one, that results in great psychological discomfort and hence resistance. The term used to describe this situation is “taboo trade-off”: even just considering such a deal is a major social taboo.

Taboo trade-offs are perhaps most pronounced when they involve a clash between a concrete, identifiable detriment and a more abstract concept such as (financial) sustainability. Society generally finds it acceptable not to include a treatment in the standard health insurance package because it has limited benefits, but is distressed when specific patients are denied an effective but expensive treatment that has been excluded on cost grounds. This, after all, exposes the great taboo: a person has to suffer solely because it is too expensive to help them. The sacred value “life” here clashes directly with the secular value “affordability”—and in a visible, personal way to boot. Most people find this unacceptable, as the case of the drug Orkambi illustrates (see Box 8.1).

Box 8.1: An Authorization Dilemma in Dutch Healthcare

When a drug has little effect, deciding whether or not to reimburse it from collective funds is not much of a normative dilemma. Things become more difficult when a treatment is definitely clinically effective (it delivers health benefits) but not cost-effective (those benefits do not outweigh the financial investment required). When it was first introduced, the cystic fibrosis drug Orkambi (lumacaftor/ivacaftor) seemed to fall exactly into this category. But the proposal that it therefore be excluded from the Dutch basic statutory health insurance package sparked a public outcry, leading to parliamentary questions and direct appeals to the responsible minister.

Because the cost of the drug was estimated at €400,000 per quality-adjusted life year (QALY, see Box 7.1), the National Health Care Institute (Zorginstituut Nederland, ZiN) advised the minister to negotiate on the price. After several rounds of talks with the manufacturer, Orkambi was eventually included in the package from the end of October 2017. Its final price, and hence its cost-effectiveness, has still not been revealed.

This example shows that, despite broad support amongst the Dutch public for the general principles behind prioritization, controversy can arise over its application in specific cases.

Yet sometimes there is no alternative to such choices. After all, we have established that the resources we can or want to spend on care are finite. As they are in other public policy domains. So choices have to be made somewhere, and someone will suffer as a result.

Nevertheless, people are generally willing to go a long way to avoid taboo trade-offs. And when they are unable to, they have a strong tendency to deny it; for example, by emphasizing other factors they have taken into consideration (“the benefits are only small, and very uncertain”). This is essentially dressing it up as a “routine trade-off”—the kind of judgement policymakers face on a daily basis. Another way to make a taboo trade-off more acceptable psychologically is to think of it as a more or less inevitable conflict between two sacred values, what we call a “tragic choice”² or “tragic trade-off”.

Not long after the high-profile Orkambi controversy, the drug Spinraza came onto the market for the treatment of a rare hereditary muscle disease. Its cost per QALY is even higher than Orkambi’s: between €600,000 and €1.7 million.³ And it is part of a trend. More and more drugs that are clinically effective but place a substantial—possibly too substantial—financial burden on society are in the pipeline (see Chap. 2), and hence so are more and more potential taboo trade-offs.⁴ How are we going to deal with them? Roughly speaking, there are two possibilities.⁵ One is to explain to the public that such trade-offs are unavoidable and are in fact made in all kinds of policy domains, then count on their understanding. The other is to view such trade-offs as inherently “tragic” and to present them as such. Although people suffer and so a sacred value is violated by not paying for the treatment, the same would happen if its cost were covered. Because then a choice, explicit or implicit, might have to be made to divert funds away from other treatments or forms of care. Which could be detrimental to the health of other groups—by, for example, undermining care provision for vulnerable people (see Chap. 7). This logic of implicit choices in a context of scarce resources is one of the key messages of this report. The decision here is therefore not just about care versus cash, but ultimately also about care versus care. As we saw during the recent pandemic over the issue of scaling down “regular” care in favour of urgent “Covid care”, this will always be a tough call, especially if the implications of one of the two options are less visible.

8.1.2 Statistical and Actual Lives

This observation brings us to another psychological phenomenon: the visibility of those who benefit from an intervention. Choices are easier when they concern a so-called “statistical life” rather than a real person.⁶ Suppose we have to decide how much we want to spend on measures to improve air quality in the Netherlands. We can predict with reasonable accuracy how many lives we would save, but can never identify whose lives they would be—which individuals would have died if we had not acted. Their lives may have been prolonged by the measures, but they remain statistical, unidentifiable individuals. Something similar often happens in preventive medicine: much of the health gain is statistical in nature, and hence so are many of the lives saved. We know that, on average, universal prevention benefits the entire population, but we cannot pinpoint a specific individual it has helped. Were a so-called “fat tax” to be introduced, for example, we could never ascertain who did not have a heart attack as a result. This abstract outcome is fundamentally different from that brought about by the kind of care provided at hospitals, by GPs or in nursing homes, say, in response to the specific needs of a specific person.⁷ This gives rise to what it known as the “identified lives effect”⁸: despite there being no good moral justification for doing so, people have greater empathy with real human beings they can put a name to, as it were, than with the anonymous lives reported in statistical data. That is because they feel more connected to those “identified lives”.

One final, related phenomenon is the urgency of a choice. In the previous chapter we discussed the rule of rescue—the normative principle that health gains in urgent cases should be given priority. This approach is in keeping with the way things are done in emergency situations, such as a major traffic accident. In those circumstances, triage is carried out according to the urgency of the patient’s condition. But when it comes to prioritization decisions at the policy level (over the contents of a collective insurance package, for example), it is less obvious why more value should be attached to potential health gains for acute patients than to the same amount of gain for less acute ones.⁹ Although we have good reason to assume that people actually prefer other prioritization principles—certainly after proper reflection (see Chap. 7)—urgency often turns out to have a consequential or even decisive effect in decision-making. This was the case during Covid-19, for instance, when in practice policy was directed mainly towards preventing immediate and obvious damage to health. As with the identified lives effect, we tend to notice and understand urgent health problems more readily, which potentially gives them an advantage when policy is being shaped.

Key Points—The Psychological Perspective

• Making choices in health and social care is always difficult because there is a social taboo against juxtaposing good health versus financial sustainability (the taboo trade-off).

• Another challenge is that the benefits of preventive medicine, say, are often statistical in nature and cannot be traced back to actual identifiable individuals (the identified lives effect).

• Considering trade-offs as inherently “tragic” choices, a conflict between two valid claims to care, can increase their social acceptance.

8.2 The Perspective of Opposing Interests

In this section we look at the role played by vested interests, of all kinds, when making choices in health and social care. How do the interests of voters, patients and users, suppliers, politicians and other groups influence prioritization? We look in particular at the effect that opposing interests can have within the political arena and upon decision-making processes. After all, making choices in care is a political matter as much as anything else. Even though politicians have no direct powers in respect of certain choices, they are still called to account if one becomes the subject of public controversy.

8.2.1 Voters, Voting Behaviour and Majorities

In a democracy, politicians’ room for manoeuvre can be explained to a large extent by the preferences and expectations of the electorate, their potential voters. Models that take this perspective therefore view political behaviour primarily as an effort to maximize votes.¹⁰ This does not mean, of course, that politicians’ own ideals and convictions do not guide their actions as well, but it does mean that the scope of those actions is limited in practice. Not least, simply because they have to be elected or re-elected in order to actually translate their ideals into policy. One influential model in this respect is the median voter theorem, although it is almost certainly oversimplistic in the context of Dutch multiparty and coalition politics. Nevertheless, it can help to understand some aspects of choice processes in care. In a more complex political context, for example, the need for governments to secure the backing of certain dominant electoral groups, like “the middle class”, also plays a role. This means that politicians have an incentive to focus primarily upon the interests of those groups. When it comes to health and social care specifically, the implication is that forms of provision the “median” voter expects to use are in a stronger position than others to attract political support, even though their prioritization would not necessarily be justified in terms of health gains or upholding public values. Furthermore, it follows on from this that the “favoured” provision tends be the most heavily used. Dutch hospitals, for example, treat more than 8 million patients annually,¹¹ so almost everyone knows someone who had to go to hospital in a given year—and thus “sees the need” for them. The situation is very different for specialist mental healthcare and child and youth care services, both of which have “only” about half a million users a year.¹²

At an even more fundamental level, this analysis is about the expectations a typical voter has of the welfare state—and of health and social care within that state. As we saw in Chap. 2, these expectations are also linked to the nation’s demographic characteristics: an affluent and ageing population will be more willing to invest in care than a young, poor one. It will also want to distribute resources in a manner that suits its own interests—by ploughing more into care for the elderly, for instance. In recent decades, moreover, society has come to expect that use of care will increase rapidly and that quality improvements—in curative medicine especially—will be included immediately and in full in the standard package of entitlements (see Chap. 7). Previous attempts at reforming other aspects of the welfare state, as such as pensions and social security, show that it takes a long time and a shared information base before suppositions of this kind shift.¹³ In the care sector, too, public perspectives and expectations—normative and otherwise—ultimately determine whether reforms are successful. And it can take years to build broad support for them.¹⁴

8.2.2 Avoiding Blame

In a classic article, the American political scientist Kent Weaver analysed the behaviour of politicians. He came to the conclusion that one of their most important motivations is to avoid being blamed for unpopular decisions.¹⁵ This is because voters have a so-called “negativity bias”¹⁶: they are more sensitive to actual or perceived negative aspects of policies than to positive ones. Politicians’ electoral ambitions therefore dictate that it is in their interest not to be held responsible for effects perceived as disadvantageous—even more so than being acknowledged for positive outcomes. This is particularly true in situations where an existing right is at stake. Politicians use a range of strategies to avoid the blame for its loss, or to neutralize the impact of that accusation. Examples include keeping an unpopular policy choice off the agenda as much as possible, redefining the issue in such a way that the “losers” are less visible, finding a scapegoat, shifting the choice or postponing it. This explanatory model is also used in the context of choices in care.¹⁷ In fact, it goes some way to explaining why it is so difficult for politicians to take negative decisions in concrete cases. And why they are so sensitive to accusations that they are “cutting back” on care, even if expenditure is actually increasing (see Sect. 7.6, on forecasts and the normalizing role played by the baseline). Particularly in a context where the choice before us has elements of a taboo trade-off, avoiding blame quickly becomes a compelling motivation for politicians. This is one key reason why choices that are unpopular but have to be made in the public interest are so often delegated to unelected bodies. We return to that topic later in this chapter.

8.2.3 Interest Groups and Organizational Strength

Other explanatory models look at the power of organized interest groups.¹⁸ The most important of these in health and social care are patient and user organizations, care providers and their organizations, suppliers (pharmaceutical companies, manufacturers of medical devices and so on) and the buyers of care (governments and insurers). The central assumption in these models is that the interests of such groups never coincide with those of the collective¹⁹ and that they therefore organize themselves in order to align decision-making with their own perspective. Sometimes they do this behind the scenes (lobbying), in other cases by influencing public opinion (publicity campaigns and the like) and often through a combination of the two. The degree to which they achieve their objectives depends upon such factors as their organizational strength, internal coherence and social authority. Interest groups tend to be particularly successful when the benefits of a policy are highly concentrated within a specific, usually small group, whilst its costs are diffuse and spread more widely.²⁰ Small groups with a lot to gain are strongly motivated to pursue that end and, due to their limited size and lack of internal conflicts of interest, are able to organize themselves relatively easily around their objective—all the more so when it is a narrowly defined goal.²¹

One not uncommon example in healthcare is lobbying for collective insurance coverage of an expensive medication for a rare disease. Both the drug’s manufacturer and the patients concerned have a strong stake in achieving this, whilst the more abstract, diffuse interests of financial sustainability and affordability are opposed. Through a combination of behind-the-scenes persuasion and public campaigning, the lobby hopes to coax politicians and other decision-makers into shaping policy more to suit its own wishes. And often justifiably: a classic study in the United States found that drugs for conditions with active and well-funded patient organizations are approved more quickly.²² This is a situation fundamentally different from that in other fields of health and social care, especially preventive medicine. There are hundreds of patient organizations in the Netherlands, for instance, but no “Dutch association of prevention users”. On top of that, much of prevention is essentially about changing behaviour, such as taking more exercise and eating, drinking or smoking less—and whilst those activities might be unhealthy, they are also linked to massive economic interests. Viewed through the lens of interest-group theory, these factors help explain why the lobbies against some forms of prevention are well-organized and those in favour weak.

8.2.4 Visibility and Exit Options

Finally, using the “exit, voice and loyalty” theory²³ described previously (see Chap. 3) it is possible to arrive at a similar conclusion from the perspective of the “end user” of health and social care—the patient or “client”. If the quality of a public good like care is substandard, users essentially have two options. They can either switch to another provider (exit) or voice their complaints in public, with their choice determined by their loyalty to the provider in question and the available scope to find another. In large parts of the Dutch care sector the exit options are limited, although there is some choice in the markets for health insurance and provision, most especially curative medicine. This may in part explain why quality and accessibility are best in that field (Chap. 4)—the possibility that users will switch creates an incentive for providers and buyers to perform well. In much of the rest of the sector, however, the only option available is “voice”. In a collective domain of this kind, as often as not that means pushing the issue on the political or policy agenda. Again, this is easier to accomplish if it involves a specific and narrowly defined interest. More importantly still, groups that understand how the system works and are able to make their perspective seen and heard through lobbying or public campaigns are more successful in these efforts (see Box 8.2). This may partly explain why issues surrounding the quality and accessibility of care in certain fields serving socially vulnerable groups—specialist mental healthcare, child and youth care services, care for the elderly and so on—are often only picked up relatively slowly.

Box 8.2: Lobbying and Visibility During Covid-19

The public battle that broke out in early 2020 regarding the Dutch authorities’ prioritization of coronavirus vaccinations illustrates the importance of visibility and organizational strength for an interest group. In a number of advisory reports, the Health Council of the Netherlands (Gezondheidsraad) had recommended that vulnerable elderly people be vaccinated first as that would maximize the health gains. Yet various social groups subsequently succeeded in rearranging the order of priority by means of appeals in the media. This shows how a relatively heterogeneous group with little voice can be put at a disadvantage when it comes to allocation questions in health and social care.

8.2.5 Interests Versus Ideals

In this section we will look at choice processes in care, and the associated politics, from the perspective of vested interests. But this does not mean that we claim that interests alone shape people’s behaviour. We have already seen (in Chap. 3) that there is broad public support in the Netherlands for the principle of solidarity, even when it is not in people’s own interests. And if our society had not also put that principle into practice, its health and social care system would have collapsed long ago. Citizens, politicians and other actors in the care sector do thus uphold their ideals, over their own best interests. But that does not mean that vested interests should be written off completely. They do play a role in the choices made in care, and we cannot always understand the outcomes if we do not take that role into account.

Key Points—The Perspective of Opposing Interests

• Politicians have an incentive to invest in aspects of health and social care that are used and considered important by a broad section of the public, even if quality and accessibility are already relatively good in those areas.

• Avoiding blame for unpopular decisions can be an important motivation for politicians.

• Interest groups are more successful at influencing policy if the benefits are concentrated within a relatively small, homogeneous group.

• Some societal groups are less successful in making their voices heard in the political arena and public debate.

8.3 The Institutional Perspective

Another scientific tradition looks at the institutional context within which policy choices are made. The question here is how the design and structure of the institutions concerned help shape those choices. The word “institutions” can be used here in both a narrow and a broader sense. In the former it refers to the formal government bodies that take decisions, and their powers; for example, parliament or regulators such as the ZiN and Dutch Healthcare Authority (Nederlandse Zorgautoriteit, NZa). What are they legally allowed to do and what is beyond their remit? More broadly, by “institutions” we also mean the informal customs, conventions and agreements which affect and restrict those actors in their freedom of action. In this section we look at a number of important institutional aspects of choice processes in Dutch health and social care and compare them with other countries. First, though, we take a look from a theoretical perspective at the question of what responsibilities surrounding choices in care belong in the political domain, and which belong elsewhere.

8.3.1 Responsibility for Choices—Distant or Close?

At an elemental level, prioritization in care is a normative—and hence inherently political—activity. After all, it is about the issue of what we as a society find most important. At the same time, as we saw in the previous chapter, it is also an activity requiring a high degree of technical expertise: who benefits from what care under what circumstances? In addition, as pointed out earlier in this chapter, it is an activity loaded with psychological baggage: how should politics deal with the complex considerations involved, and where should responsibility for the choices made lie?

The trend in the Western world in recent decades has been to distance certain aspects of public policy and their implementation from the political arena.²⁴ In the academic literature this process is called “delegation”, and the organizations that exercise the delegated powers are often referred to as “non-majoritarian institutions” (NMIs).²⁵ Think of independent central banks that are allowed a considerable degree of freedom within a certain mandate (since the 1990s, usually an inflation target). At the European level too, a variety of NMIs have been established since the 1980s, amongst them the European Medicines Agency (EMA)—which attracted considerable public attention during Covid-19 over vaccination issues.

At the theoretical level, there are a number of reasons for delegating executive responsibilities from political actors to NMIs.²⁶ One of the most important is the provision of information, and its asymmetry, in policy domains where technical knowledge is crucial. Another is speed and efficiency: by setting up arm’s-length organizations to respond to specific issues, politicians can concentrate upon general policy. Thirdly, there is the blame avoidance factor discussed earlier. NMIs can be useful vehicles for decisions that politicians fear will be unpopular, but are nevertheless necessary for the common good (the term “depoliticization” is sometimes used in this regard). Related to this is the issue of credibility—in some cases people find the promises made by NMIs more believable and consistent than those of political actors who are more directly exposed to public pressure. And finally, for the same reason, in some cases these institutions are considered to more likely than politicians to avoid deferring costs and risks. The latter two mechanisms come into play, for example, in the role entrusted to central banks in controlling inflation.

In recent decades, various responsibilities in the health and social care sectors in the Netherlands and other countries have been transferred to NMIs. In the Dutch system, the most prominent are the ZiN—now responsible for advising on collective insurance package management and quality standards—and the NZa, which is supposed to act as the “superintendent” of the care market. Abroad, the National Institute for Care and Health Excellence (NICE) in the United Kingdom is a well-known example. It was set up in 1999, initially to improve the quality of care and in particular to combat so-called “postcode medicine”.²⁷ Its remit was later expanded to include package management and health technology assessment.²⁸ Similar bodies exist in France, Germany, Italy, Sweden, Poland and Spain.²⁹

To a greater or lesser extent, all of the above reasons for distancing executive responsibilities from politics apply to these organizations. For instance, many of the activities delegated to them—and certainly those related to package management—have an important medical and/or technical component for which specific expertise is indispensable (advice concerning the composition of the collective insurance package in the Netherlands is a task for the ZiN’s Scientific Advisory Board). Their distance from the political decision-making process can strengthen their credibility and facilitate unpopular choices by shielding politicians from direct responsibility for them in the eyes of the public. And they boost the speed and efficiency of decision-making—even if they had the will and the necessary know-how, after all, political actors simply have no time for the countless prioritization calls that have to be made each year in health and social care.

Not that delegation to NMIs is without its drawbacks, though. Or that in specific cases there may not still be a public clamour for politicians to intervene. In England, for example, arm’s-length package management has sometimes been thwarted by political pressure. In 2020 the government there decided to establish a dedicated Cancer Drugs Fund with a more lenient appraisal process than for other medicines.³⁰ This example illustrates how the line between the fundamental political considerations and (technocratic) implementation is not always clear-cut, and indeed is often controversial in itself.

8.3.2 To Cover or Not to Cover? Collective Package Management in an International Context

Delegating responsibilities is not an absolute, binary phenomenon. NMIs in the care sector and elsewhere enjoy varying degrees of formal and de-facto autonomy. Some have a narrowly defined remit, others are allowed more latitude. Some confine themselves to providing advice, whilst others take real decisions. Their independence at the governance level also makes a difference. Board appointments, for instance, may or may not be kept at arm’s length from the political process. Moreover, autonomy is a factor not only vis-à-vis the government—the NMI’s ultimate “client”—but also with regard to the regulated actors within its purview (manufacturers and suppliers, care providers, insurers and so on).

As a case study, we have compared collective health insurance package management in the Netherlands and other European countries from the perspective of delegation (see Box 8.3). Especially when it comes to curative medicine, this is a good topic for closer examination because technological developments will be largely responsible for the growth expected here in the coming decades (see Chaps. 2 and 7), so the extent to which they can be managed in a prudent manner is going to be decisive for future financial—and indirectly societal—sustainability.

Issues of collective package management extend far beyond curative medicine, however. Other fields of health and social care have their own “guaranteed” provision as well, after all: a set of interventions, amenities and other services funded from collective coffers that eligible citizens are entitled to make use of. Looking to the future, this is going to come under huge pressure—in long-term care in particular. Nevertheless, package management in curative medicine remains a good case study because it is an aspect of the choice process around prioritization in care which is relatively easy to compare internationally and relatively widely researched. This increases the likelihood that we can learn something from it in a general sense, with regard to the institutions needed when making choices in care. Furthermore, it is very possibly the aspect of the sector in which the challenges around such issues as taboo trade-offs, opposing interests and real people versus abstract values are most visible.

Box 8.3: Collective Package Management Institutions Internationally

All countries with any form of collective healthcare system are faced with the question of how to define its basic insured health package, and by extension how to weigh up patient interests versus sustainability considerations. Comparing the way these decisions are made in the Netherlands, Germany, the UK, France and Sweden, we find considerable variations in assessment frameworks (what is taken into account?), reach (what is and is not decided formally?) and institutional embedding (what public, semi-public or private actors have what roles and responsibilities?).³¹ So the overall criteria differ widely between countries. Understandably, clinical effectiveness (does the treatment work?) plays a role everywhere. But Germany and France do not explicitly consider cost-effectiveness. Another source of variation is the procedure’s reach: what forms of care are assessed and which are not? Its approach also differs: some countries use a “positive list”, meaning that in principle treatments are only reimbursed if they are on that list, others a “negative” one: in principle everything is covered unless specifically excluded. For extramural (pharmacy-dispensed) drugs, for instance, the Netherlands, France and Sweden have positive lists. With regard to the political and social debate that may arise around package management decisions, one relevant variable is whether the managing body’s appraisals take the form of advice to a political actor (the responsible minister), as in the Netherlands, or are decisions in their own right—as in Germany and, to some extent, the UK. In the latter situation politicians can still intervene, but the threshold to do so is higher than in countries where appraisals are advisory only.

There is considerable institutional variation in the organization of collective package management across Europe (see Box 8.3). From a sustainability perspective, one important question here is how these differences affect outcomes. This issue has been examined in a number of comparative international studies.³² They include an extensive and systematic investigation of the authorization of eleven medicines for four conditions (osteoporosis, multiple sclerosis and two forms of cancer) within the OECD,³³ with policy in that regard interpreted as a measure of the “generosity” of a healthcare system—at least as far as curative medicine and drugs are concerned. Authorization is not a binary, “yes or no” process in all countries, but can also be conditional, temporary or partial (only part of the drug’s cost is reimbursed). Summarizing the results of this study, Fig. 8.2 shows that there are considerable variations between countries, and between the drugs, in their authorization outcomes. The Netherlands emerges as a relatively generous nation (yellow bars towards the top), whilst others are far stricter (horizontal red rows towards the bottom). Some of the drugs achieve reasonably consistent authorization outcomes internationally (predominantly yellow or red columns), but for some the picture is more mixed (columns in the middle with a variety of colours). Contrary to their expectations, the authors of this study found that a nation’s wealth and its care budget did not significantly influence its decision-making in respect of collective package management: wealthy countries are not systematically more generous than poor ones. The nature of the healthcare system does have some effect, though: those funded to a greater or lesser extent through social insurance schemes, as found in the Netherlands and Germany, are more generous than those financed from general taxation like the National Health Service in the UK (see Chap. 5 for more on the different types of system). The institutional aspects of package management are also a factor. Countries where a treatment is not reimbursed as a matter of course unless a specific decision has been made to include it in the package (that is, with a positive list—as the Netherlands has for drugs) are more generous than ones with a negative list. The explanation for this is that a negative list entails an explicit and possibly unpopular decision to exclude a treatment by adding it to the list, whereas a positive list makes non-inclusion the default position and so that decision is avoided. Then there is the degree of delegation to the authorizing body, as well as its autonomy with regard to both government and regulated actors, in this case those in the field of healthcare. In general, the more independent the institution, the more stringent its decisions are. Transparency, meanwhile, is associated with more generous decisions. These two results can be attributed to blame avoidance. Finally, the inclusiveness of the authorizing body—the degree to which various social and interest groups are represented within it—was expected to increase generosity, but in fact no effect was observed. Another study, a quantitative analysis of package management decisions in different European countries, has shown that taking cost-effectiveness into account leads to a higher percentage of negative recommendations.³⁴

Fig. 8.2

Inclusion of eleven medicines in the basic insured health package in 25 OECD countries. White indicates no data. (Source: Böhm et al., 2014)

Unfortunately, no analogous quantitative or semi-quantitative international comparative research findings are available concerning the organization of package management in such fields as long-term care, child and youth care services or mental healthcare. One more qualitative study has found that when it comes to the sustainability of long-term care for the elderly, it is particularly important to formulate a strategic vision with broad public support addressing the future role of this provision and so also society’s requirements with regard to the collective package delivering it.³⁵ Cultural and normative aspects of the choice process probably weigh more heavily in this field than in some others, not least because new technology—and hence the medical and technical component of the assessment process—plays only a limited role here (see also Chap. 7). But little is known about what this implies for responsible package design and implementation. Given the substantial expected growth in long-term care for the elderly,³⁶ this leaves an unanswered question. In general terms, however, we have no reason to assume that principles similar to those applicable in curative medicine (the importance of the “standard”, of delegation to a non-political actor, of autonomy and so on) should not also apply here. Although the cultural and normative side of the process will probably require a firmer grounding, even if a strategic vision of the kind mentioned above is available. It is also likely that with the increasing development of e-health solutions and robotics for fields like care for the elderly and mental healthcare, the technical aspect of their package management will increase in importance.

Key Points—The Institutional Perspective

• The institutional context is important for the outcome of choice processes in health and social care. Collective health insurance package management, especially with regard to medicines, is a good example of this.

• Choices are distanced from the political arena (delegated) for reasons of technical expertise, efficiency, credibility and to avoid responsibility for unpopular decisions.

• Package management is stricter in countries with more autonomous managing bodies.

8.4 The Timing Perspective

A classic dictum has it that politics is about “who gets what, when, how?”.³⁷ Up until now, we have focused mainly upon the distribution question: who gets what? But choices in health and social care also have an important timing component. Actions we take now have consequences later—although sometimes only decades in the future.

8.4.1 Choosing for the Long Term in Care

One important question is how societies deal with situations where the costs and benefits of public policy play out over different time spans.³⁸ Think of pension reforms, for instance, which involve short-term costs while the benefits only take full effect in the longer term. Other examples include environmental and climate policy, where again the economic price (of reducing emissions, for example) is more or less immediate but we only reap the fruits later. Or reducing government debt: in the short term costly for today’s taxpayer, but a boon for future generations. So the costs and benefits of a policy are distributed not only between groups and individuals in a society (as a horizontal investment), but also temporally³⁹: from the now to the future (a vertical investment). From the perspective of debt avoidance and the electorate’s generally short-term outlook, and in light of our previous discussion about interest and voter groups, we might expect that democratic governments would be reluctant, or even unable, to impose short-term costs in this way, with the promise of a return only at some (often vague) later date. But that would be jumping to conclusions. In reality, on occasions governments do all these things to a greater or lesser extent: they reform pensions, implement environmental policies and moderate national debt—all with an eye to the future.

The relevant question here, then, is what enables them to make forward-looking decisions of this kind. First of all, there is one quite simple explanation: voters sometimes do actually care about the long term—even when something is not in their own interest, they do think of the next generation. And they may well also be prepared to incur short-term costs and to exert pressure on politicians to act now with the future in mind. One obvious example is the increasing public support for strategic climate policy. A second important aspect is that vertical investments are more likely than horizontal ones to generate a positive-sum outcome. That is, one where those bearing the costs eventually also reap the returns—as opposed to a zero-sum situation, where one group benefits at the expense of the other. Preventive medicine is a good example of where this is possible, if the group making the investment shares in the health gains it ultimately achieves.

Nevertheless, we can also identify a number of barriers to long-term policymaking.⁴⁰ First, the electoral risks involved—which in turn are related to the extent to which voters pay attention to future benefits. Then there is the predictability (or otherwise) of a policy’s effects in the long term: how confident can we be that the promised benefits will ever actually come to fruition? And finally there is the question of institutional capacity, and in particular the rooting that binds interest groups to a strategic goal. Each of these factors can be influenced, however, to increase the chances of securing commitment to a vertical investment.⁴¹

In health and social care, the temporal aspect is particularly relevant to preventive medicine and efforts to improve public health. After all, investments made now often only generate returns in years to come. But it also plays a role, albeit to a lesser extent, in the training of care personnel and in major capital investments, such as building suitable housing for large numbers of elderly people who are living independently for longer.⁴² As we have seen earlier in this report, it is difficult to apply a long-term perspective to choices of this kind. This is evident, for example, from the low levels of investment in preventive medicine over a period of decades now (see Chap. 7), as well the sometimes massive policy swings when it comes to attracting and retaining staff (see Chap. 6). In other public policy domains, the Netherlands is already working very explicitly to create and maintain institutions which strengthen the long-term policy and investment outlook. These range from robust pension funds to the various incarnations of the so-called Delta Commission, set up to advise on the nation’s strategic approach to water management. In the care sector, by contrast, relatively little attention seems to have been paid to the development of institutions with this kind of far-reaching perspective. Not that that is entirely lacking: the legislation governing the licensing of special medical procedures, for instance, takes into account expected future demand for these interventions and the infrastructure they will require.⁴³ Overall, however, the long-term outlook in health and social care would benefit from a strengthening of such institutions. Through them the public might then exert pressure—e.g. by means of citizen participation initiatives—to adopt more forward-looking policy (see also Sect. 8.5) in line with our previous observation that voters do in many cases look beyond their own interests and consider the long term as well.⁴⁴

Bolstering the long-term perspective in care policy is especially important when it comes to preventive medicine, because the benefits often lie years or even decades in the future. This raises a fundamental barrier to effective investment in primary prevention (combating disease before it develops) by private actors like health insurers and care administration bureaus: the returns are beyond their time horizon. In such cases, it becomes a public task to make or require the necessary investments. That barrier is not so high when it comes to secondary and tertiary prevention (respectively, early detection of an existing condition and reducing the impact of an established one), because there the return on the investment is more immediate.

Key Points—The Timing Perspective

• Making choices in health and social care is also a question of timing: costs incurred now generate benefits (health gains) later. This is especially true when it comes to preventive medicine.

• The way institutions are organized can increase the chances that policies and investments are made in the long-term interest.

8.5 The Legitimacy Perspective

We pointed out earlier in this chapter that it is important that choices in health and social care be legitimate. In theory, citizens in a democratic society express their views on this matter at the polls and societal legitimacy thus arises from the mandate of the representatives they elect.

In reality, though, it is often difficult to anchor such legitimacy entirely in the regular democratic process. The reasons for that are also discussed above: politicians’ tendency to avoid blame, for instance, and taboo trade-offs. One potential solution to this problem is for choices in care to derive their legitimacy from even more direct forms of citizen participation in the process. This possibility is at the heart of our final perspective on making those choices.

The underlying idea in this discussion is that the legitimacy of a choice process is a product not only of the quality (actual or perceived) of the resulting policy, but also of the groups involved in the process. We refer to the first of these aspects as “output legitimacy” and to the second as “input legitimacy”.⁴⁵ By involving the right groups—ordinary citizens as the users of care and its funders, for instead, but perhaps also other stakeholders—in the process, the final decision it generates will be considered more legitimate. This perspective is closely linked to the normative basis of some forms of procedural justice, namely that a just prioritization decision can only be made if all relevant perspectives have been taken into account (see Sect. 7.2).

Citizens and other stakeholders can be engaged in different ways with the choices made in health and social care.⁴⁶ The specific form this takes matters for expected outcomes, and possibly for the effect upon their legitimacy as well. First, for example, there is the issue of the choice people are actually being involved in. Does this concern a specific decision—like what treatments to include in a collective insurance package—or is it about broader, more general priorities such as the extent to which society should focus upon preventive medicine or upon care for the elderly? One related factor in this respect is the duration of the citizen participation project: is it a temporary initiative or a more permanent scheme? Then there is form it takes: is it purely advisory, or are participants given a formal role in the choice process—for instance, as voting members of a committee entrusted with delineating the collective insurance package? A third relevant variable is who exactly takes part: do people register themselves, are they chosen (at random or otherwise) from the general population or are they selected as representatives of particular interest group? Finally, the degree of interaction with other perspectives discussed earlier in this chapter is also important: can and do citizens actually want to be involved in making choices of this kind, or are the taboo trade-offs too strong?

Let us begin with the latter aspect. In 2018 Radboud umc, a teaching hospital in the Dutch city of Nijmegen, organized a citizens’ forum under the title “Choices in Healthcare” (Keuzes in de Zorg). This exercise revealed that, with explanation and information about the costs and benefits of care and about relevant normative frameworks and practical considerations, even lay people are willing and able to make difficult choices about prioritization in this domain.⁴⁷ The forum comprised a representative group of ordinary citizens who were asked to think about priorities in healthcare, focusing upon on a range of treatments that might or might not be reimbursed collectively. They were also asked to think about the principles underlying their choices. In an earlier example, a so-called “Citizens’ Lab” in Belgium was asked to address the broader issue of prioritization in healthcare.⁴⁸ It spoke out in favour of a greater emphasis upon preventive medicine, health promotion and health education, as well as for more focus upon quality of life rather than prolonging life. Both of these examples show that, with good, neutral guidance and the provision of structured information, the existence of taboo trade-offs need not be an impediment to citizen participation—and certainly not if this deals with broader principles and takes an advisory form. The crucial factors here are neutral guidance and structured information, as without them participants lack the relevant facts they need.

In a recent report the OECD analysed almost 300 examples of deliberative citizen participation projects in healthcare and other sectors.⁴⁹ Amongst them were Ireland’s citizens’ assemblies on abortion, climate policy, the ageing population and the electoral system, which have been instrumental in addressing controversial issues in Irish society.

With regard to healthcare more specifically, some countries have established participatory initiatives to consider questions like how to deal with expensive medicines or what normative principles to apply when taking decisions about the collective insurance package. These include the so-called “citizens’ councils” set up by NICE in the UK. Even more far-reaching is the permanent inclusion of lay members in the committees that take package decisions. The idea behind this is that their contribution increases the input legitimacy of those decisions, since they have been arrived at with backing from ordinary members of the public. The Netherlands, however, has yet to reach this level: citizen participation in care-related choices here remains limited to the right to attend and contribute to public meetings of decision-making committees.

Moreover, there are also potential downsides to this form of citizen participation. Indeed, it can actually harm the effectiveness and ultimate legitimacy of choice processes. One important aspect in this respect is the extent to which lay participants act—and are seen—as representatives of the general interest rather than a sectional one. In the light of the theory of interest groups discussed earlier, this is especially the case when stakeholders (or their proxies) are given a role in the choice process, or when they are more motivated or better able to take advantage of the opportunities they are afforded. And even more so when they are entrusted with real decision-making power—an actual vote, say, rather than just an advisory role. In its extreme form, the literature describes this phenomenon as “regulatory capture”: that is, when a regulatory body (an NMI, for instance) is “hijacked” by the very interests it is supposed to be monitoring and regulating.⁵⁰

Here lies a source of tension between two competing objectives. From the input-legitimacy perspective, it may be desirable to give stakeholders or their proxies a major role in choice processes. But when it comes to safeguarding the general interest, there lurks a danger here. As we have already noted, after all, the literature shows that activities like the management of collective insurance packages should be independent not only of government, but also of the various other stakeholders with an interest in issue at hand. To strengthen true citizen participation, then, it therefore seems advisable to ensure that it involve “ordinary” citizens drawn from the general population by means of a representative selection procedure rather than either implicitly or explicitly choosing those with a particular motivation to take part in the process. And particularly so when the focus is broad priorities and the criteria whereby they are defined, as was the case with the Dutch “Choices in Healthcare” forum. Furthermore, it is better that initiatives of this kind be anchored firmly within the overall management structure of the care system, as NICE does with its citizens’ councils. In the Netherlands, such an institutionalization of citizen participation would better guarantee ongoing public engagement with general principles, priorities and criteria than the current ad-hoc approach. On the other hand, giving stakeholders with vested interests a greater direct role in the practical process of making concrete priority choices would be far riskier, especially if that role were to go hand in hand with a say in formal decision-making. In this regard, it seems more advisable to retain the current opportunities for stakeholders to make submissions to decision-making committees so that all relevant perspectives are considered at face value.

Key Points—The Legitimacy Perspective

• Citizen participation can strengthen input legitimacy for choices in health and social care.

• Research shows that, with structured information, lay people are able to properly consider normatively difficult questions and taboo trade-offs.

• Citizens can participate in the consideration of general principles, priorities or criteria, but they may also have a valuable role—either advisory or with an actual say in decisions—when it comes to more specific choices such as those related to the content of the collective health insurance package.

• There is potential tension between strengthening input legitimacy for choices in care on the one hand and, on the other, upholding institutional autonomy and the public interest.

8.6 Towards Better Choices in Care

As we have seen in this third part of our report, choices in health and social care—by which we mean matters of allocation and distribution—could probably be better. To achieve the greatest possible health gains, it is important that future growth in this sector be steered more towards preventive medicine than we would expect under the present status quo. In order to uphold public values, moreover, the same applies to those aspects of care in which quality and accessibility are currently falling consistently short of the mark (see Chap. 7). All this means that we need to dare to set limits on growth, in so doing allowing ourselves to be more selective in where that growth occurs.

Why is this so difficult? In this chapter we have analysed that question from various perspectives, which to a great extent underlie the five impediments around choices in care that we identified in Chap. 7.⁵¹ Is it now possible, based upon the resulting insights, to make any recommendations and to offer a recipe for “better choices” in our care systems? We will not do that directly here, but we do have a few tips for guidance. In fleshing them out, we refer back not only to the perspectives outlined above but also to earlier chapters and to a number of background documents.⁵²

The issue we are faced with here begins and ends with broad public support for the choices to be made in health and social care. Or, to use our terms of reference, its societal sustainability. In turn, that support largely depends upon the perceived urgency and inevitability of the choices in question. After all, there is always considerable normative and psychological pressure to avoid making tough choices in a field as sensitive as care—and especially so if they might limit its growth. A pressure which is reflected in political and institutional decision-making processes. The most important step that needs to be taken, therefore, is to increase public awareness of the inevitability of choices in care and to create new, more realistic expectations of the sector as a whole and its future growth patterns.

Through this report the WRR is endeavouring to make its contribution to that change of outlook by outlining what will happen if choice processes in health and social care do not improve. The current manner in which care in the Netherlands is organized is expected to engender its rapid growth for some time to come, with all kinds of not insubstantial negative repercussions—both outside the sector, by putting other public policy domains under pressure, and within it by “squeezing” certain forms of care. The fact is that the staffing and financial constraints facing the sector are not going to disappear, even if we as a society continue do our utmost—as we must—to mitigate them. Due to rapidly rising demand, care is becoming increasingly scarce and it is up to society to learn to deal with that and to make choices about it.

This situation demands better choices at all levels—in government, “in the field” and by individual citizens. At present, decision-making at all levels with regard to limiting growth is mostly implicit. This, however, puts at risk the public values associated with care. So what should be done? First, the government needs to take an explicit political decision concerning the growth of health and social care expenditure; it can no longer allow this to increase automatically and unchecked, in line with the demand for care. Only by making explicit choices is it possible to protect spending on other public policy domains from being displaced by the demands made by the care budget. At the same time, that cannot be the whole story. By imposing constraints only from the top down, we run a huge risk that the bill will simply end up being presented at a lower level, directly to the most vulnerable in society. Better monitoring limits to growth should not compromise the public values associated with care. This requires active political intervention in the sector, at the level of broad prioritization across its various fields. The WRR therefore argues for a greater focus upon preventive medicine and upon those areas in which quality and accessibility are currently falling below acceptable minimum standards on a regular basis.

To make these changes possible, some things will have to be done less. This leads us to the question of what forms of care we still want to guarantee and finance on a collective basis. Some limits to growth will have to be delineated more sharply and their boundaries better guarded. This does not mean that we are arguing for cuts compared with the current situation, nor that we advocate restricting innovation in care. What the WRR does favour is limited and, above all, more selective growth in certain parts of the health sector. In quantitative terms, this can only be achieved—given the current prognoses (see Chap. 2)—by moderating the growth of curative medicine and care for the elderly.

In the case of curative medicine, this primarily means more active management of the “inflow” of new forms of care and treatment into the statutory basic health insurance package and of the “outflow” of obsolete or ineffective forms—effectively creating a “control knob” that can be adjusted as part of the package management process. Technological innovation plays a far smaller role when it comes to care for the elderly, so the main issue there is what should constitute the core of collectively guaranteed care. To what extent, for example, does this include housing provision? The distribution of costs between the collective and the individual user of care will have to remain a subject of discussion. More generally, it is going to be necessary to work on a long-term vision of the role and scope of care that is supported by society, and to involve citizens in prioritizing its provision.

Recommendations Linked to Three Pillars: Society, Politics and Implementation

Ultimately, limiting the growth of health and social care remains a difficult normative consideration. In the final chapter of this report we formulate a series of recommendations, which we link to three broad pillars for better choices in care. The first of these is the societal perspective: in order to make better choices, we as a society have to face up to the fact that choices are unavoidable and that we need a clear vision of the dilemmas associated with the growing scarcity of care. The second pillar is the political perspective: where does political responsibility for choices in care lie, and how can it be handled better than at present? Finally, the third pillar is implementation: how can the question of what should and should not be offered collectively be answered in practical terms? And what institutional changes will this require? These three aspects are interrelated. For example, politicians cannot be expected to protect other public policy domains from being displaced by a growing care sector without at the same time considering better ways of demarcating provision within that sector. And they in turn have little chance of success unless there is an accompanying societal vision of the sector’s aims and priorities and of the role different forms of care should play within it.