II E C FORUM, Vol 3, No. 1, pp. 27-37, 1991. 0956-2737191 $3.00+.00 Printed in the USA. All rights reserved. Copyright © 1991 Pergamon Press pie

S P E C I A L A R T I C I . F S

S T R E N G T H E N O U G H :

T H O U G H T S O N A G E - B A S E D R A T I O N I N G

A N D I N T E R G E N E R A T I O N A L E Q U I T Y I N B R I T A I N

T H O M A S HALPER, Ph.D.

"We all have strength enough to endure the misfortunes of o~hers." So wrote Duc de La Rochefoucauld over three centuries ago, and it is still a truth that stings. Like gravity, it is a principle confirmed by events large and small every day: a pedestrian detours around a madman cursing the invisible demons that beset him on the sidewalk, a bankrupt investor is made the butt of jokes about how the mighty have fallen, television news of a remote natural disaster is pushed aside by advertisements for denture cleansers, corn flakes, and laxatives.

In public policy, this phenomenon is also not hard to find. We know, for example, that large construction projects invariably are accompanied by injuries or deaths, but when we think about them at all, we do so merely in terms of an unavoidable cost of doing business. It is unfortunate, of course, Out then again we do need the bridge, or the highway, or the office tower. Indeed, even when misfortune is not a by-product of a policy but rather its chief immediate effect, we may put up with it fairly easily, as the British experience with end-stage renal failure (ESRF) well illustrates. Provision of treatment for persons with ESRF has until recently been quite limited, so that numbers of treatable patients were simply denied care and as a consequence died. Over the years I have talked with many Britons, and none of the bureaucrats involved in resource allocation or the physicians involved in patient selection considered this a desirable state of affairs. But though many agonized over their roles, nearly all acquiesced to their demands, regarding them as a regrettable if inescapable result of resource scarcity that at best might be ameliorated at the margins by working diligently within the system. "What else," as one declared, "are we to do?" Yet, bureaucrats and physicians were virtually all able to summon the strength to endure the misfortunes of 1he kidney patients.

27

28 T. Halper

So, too, were the patients themselves. Overwhelmingly, they appeared to accept their death sentences with a fatalism so quiet and polite that it seemed to s tamp the whole enterprise "legitimate." Physicians told patients little lethal white lies -- "We have to say to them that their hearts are too dodgy to stand the strain of dialysis" [Wing, in (1); Cameron, in (2)] -- and the patients obediently shuffled off to oblivion. British reserve generally did not permit making a scene. Sometimes, general practitioners, less gatekeepers than bouncers, turned back patients without their having seen a nephrologist or, indeed, gotten a second opinion of any kind. Among all strata of British patients, the most docile and least complaining, it is universally agreed, have been the aged.

From the outset of effective renal replacement therapy a quarter century ago, the chief British criterion demarcating the treated from the untreated has been age. The National Heal th Service was committed to receiving value for money, so the rationale went, and this dictated stressing less expensive therapies and aiding persons likely to return to productive labor; on both grounds older persons -- over age fifty, fifty- five, or some other point -- were at a disadvantage. It is not that the Heal th Service is anti-aged, it was patiently explained, but merely that in a struggling economy, " a patient who would consume more than his 'fair share' of resources may be denied treatment" (3, p. 162). End stage renal disease is principally an affliction of old age; older patients are more costly to treat and have a poorer prognosis than younger patients; and older patients are far less likely to go back to work.

In Britain, health care services are rationed. "Rationing" is a term heavily burdened with connotations, mostly bad ones, and even those who discuss it often do not pause to define it (4) (5). "Rationing" here refers to the means of resource allocations at below market price. All rationing is alike in that it represents an effort to cope with scarcity and the perceived injustice of the market. And yet, of course, rationing can take a thousand forms. In this, one key question is on what basis the rationing is to proceed. Need, merit, and virtue are obvious choices. In Britain, so, too, is age. That is, patient selection was carried on by physicians, who claimed to apply only medical criteria but included age as one of these criteria.

Is age, then, a medical criterion? There is no doubt that with advancing age, even healthy kidneys function less well than younger ones (6, p. 30) and that end-stage renal disease is somewhat harder to identify and to manage. On the other hand, the elderly are so heterogeneous as a class that age can hardly be used in rigid fashion. Yet if this suggests that age might best be used as a soft criterion that alerts physicians to a range of problems, it has for years been used in Britain, especially by general practitioners, as a hard criterion that

Strength Enough 29

settled treatment questions with mechanical finality. Like any firm rule of thumb, the hard age criterion has the great practical advantage of making the life of decisionmakers much easier. Rather than agonizing over their own imperfect knowledge and impartiality on a patient-by-patient basis, physicians can categorize patients by following a straightforward, easy to apply rule. And if mistakes are made or suffering caused, blame can always be placed on the rule.

Reinforcing the power of age as a medical criterion is its normative potency. For even if an elderly patient is clearly treatable, he or she may not appear as worthy of treatment as a younger patient. The older patient probably costs more to treat and has a briefer period of satisfactorily functioning life to enjoy. To the argument that such cost-benefit and cost-effectiveness approaches are biased against the elderly (7), the retort is made that it is nature that is biased against the elderly.

The Health Service, cautious, parsimonious, a confusing mix of the centralized and the decentralized, of the spoken and unspoken, for years proceeded in classic incrementalist fashion with respect to end- stage renal disease. Policies were set down -- mostly by indirection and maneuver -- and once set down, tended to evolve gradually and predictably. Age as a rationing principle, therefore, waned only very slowly over time. In the meanwhile, Britain came to trail not only wealthier countries in its acceptance of older patients for treatment, but also many poor countries, as well.

In 1984, this pattern began to change. The Thatcher government, which had earlier taken on miners and teachers, started to challenge health care providers. Heretofore, a government's commitment to the Health Service had been evaluated generally in terms of annual budgetary increases. Observing that performance was a matter of output, the Thatcher government attacked the conventional focus on input as wasteful and illogical. But in the process of calling for greater productivity, the government implicitly abrogated one of the central implicit understandings upon which the Health Service was built: the government would respect physicians' clinical autonomy and the physicians would respect the government's resource constraints. Outraged, health care providers counter-attacked, charging the government with a heartless betrayal of the sick and an intent to alter fundamentally, if not to destroy, the sacred Health Service itself.

The government could not take such charges lightly. Widely venerated for practical and ideological reasons, the Health Service is considered by most Britons to be the nation's greatest domestic policy innovation of the twentieth century, and Mrs. Thatcher had always been vulnerable to the labels of "cold" and "unfeeling". The government, as a consequence, searched for a response that would rebut the "heartless"

30 T. Halper

charge, highlight performance and not expenditure, and leave the general productivity drive untouched. One device it hit upon was to target end-stage renal disease for special efforts by the regional health authorities. For by this time, years-long efforts by certain patient advocates, nephrologists, and media figures had induced the public to view end-stage renal disease treatment patterns as a highly visible symbol of Health Service failures.

Thus, in 1984 the government declared that all regional health authorities would be expected to reach the traditional benchmark intake level of forty new patients per million population (PMP) by 1987. Accordingly, patient intake rates that had barely doubled in the preceding decade from 15.3 PMP in 1974 to 33.9 in 1984, now leaped to 46.8 in 1986, exceeding the goal a year early. The figure stood at 55.1 in 1988, by which time incrementalism had plainly reasserted itself.

The principal beneficiaries of this development were the aged, for they constituted by far the largest segment of what had been the untreated population. Yet what is most striking to the observer is how little attention the element of age generated. For one thing, none of the major British interest groups concerned with the elderly have ever taken any interest in end-stage renal disease; a spokeswoman for Age Concern reported that "We haven't taken the issue up," and Help the Aged was so preoccupied with the question of housing that it was simply unacquainted with the subject.

And for another thing, even those preoccupied with changing treatment patterns seem to have been oblivious to their impact on the aged. For example, the European Dialysis and Transplant Association, a London based organization that gathers and disseminates impressive amounts of data, usually publishes no data on the aged at all. Its annual reports, instead, devote great attention to dialysis and transplantation among children -- even though childhood end-stage renal disease is so rare that in 1987 the thirty-three ED TA member countries together admitted only 433 patients under age fifteen to treatment (8, p. 34). Similarly, the British Kidney Patient Association and its formidable founder and president, Elizabeth Ward, target nearly all their impressive media and marketing efforts toward relieving the plight of children and young adults. A layperson would be quite unaware that end-stage renal disease is overwhelmingly an affliction of old age.

It is hard to say whether this inattention to the aged reflected a bias on the part of end-stage renal disease advocates or merely a belief that a stress on younger patients helped to market a sympathetic point of view in an age biased society. Perhaps there is some truth in both assertions. Whatever the reasons, though, the aged who for years suffered for no reasons of their own are now receiving treatment, also

Strength Enough 31

for no reasons of their own. Despite the expansion in treatment, there is little interest in

Britain in following the American path, which leads to almost everyone suffering from end-stage renal disease being offered treatment. (The 1987 United States intake rate approached 140 PMP.) Indeed, as much as British physicians and officials decry their own system's tight fistedness, even more do they disparage America's extravagance. Anecdote competes with anecdote, one illustrating dialysis centers' greed, another Congress' naivete in funding indiscriminate treatment. American foolishness or sentimentality may induce this country to pay for dialyzing patients with severe dementia, it is claimed, and America is wealthy enough to indulge its soft headedness. But a poorer Britain must insist on value for money, and avoid such senseless waste. Perhaps imaging how they themselves might prefer to spend the funds, British doctors typically denounce America's overspending with more passion than the Health Service's underspending. We have strength enough to endure the misfortunes of others, they seem to say. Why don't you?

To many Americans, such a question may appear obscenely cold and unfeeling. We imagine patients drifting off to death -- when suitable treatments have long since been developed -- and ruminate that there but for the grace of God go us all. In fact, the key moment in the life of the bill (9) that provided unprecedented federal funding for American patients suffering from end-stage renal disease occurred when the vice president of the National Association of Patients on Hemodialysis contrived to be dialyzed before the House Ways and Means Committee (10, pp. 1524-26). British physicians and bureaucrats, invariably well aware of the story, uniformly chuckle at what they take to be its absurd theatricality. Is this really how you Americans make public policy? A bit of medical hocus-pocus moves you emotionally, you reflexively respond with a law, and years later find that you have set Up a multibillion dollar program almost by inadvertence -- and learn that victims of other diseases have queued up to seek similar programs for themselves. Is it sensible to defer economic analysis until after a program has been adopted and vested interests created? Is this how an aging society ought to address an expensive, chronic, age-related affliction?

Defensively, Americans may retort that the impact of the dialyzing scenario has been vastly overblown. While it certainly helped in the bill's passage, it should be viewed as merely the last step in a long campaign, involving research and development, demonstration projects, funding from the Department of Health, Education and Welfare and the Veterans Administration, and innumerable public relations and lobbying episodes. Still, even a sympathetic American

32 T. Halper

must concede that all these efforts might well have gone for nought, were it not that Congressmen found it so difficult to abandon publicly the venerable norm that life is beyond price (11).

To the British observer, on the other hand, the private virtue of empathizing with another 's suffering can easily become a public folly. Of course, such suffering is terrible; of course, we are grateful that we are not the victims. Yet public policy involves principles, not individuals; policy makers must think in terms of large numbers of persons. However, Americans are prone to focusing upon a Jessica McClure stuck in a well (or even a pair of whales threatened by arctic ice) at the expense of far more numerous "statistical deaths" (12) (13). This puts us at the mercy of those best able to manipulate our emotions, as well as offering policy makers a cheap and convenient way to establish their virtue in a very public fashion. In this regard consider Machiavelli's (14) stricture that though the leader must appear to be moral, he should not be confined in his official role by private virtues, for ruthlessness and deception may be required to achieve the public good. Citizens may deplore this and long for nice leaders, but niceness is not a leadership quality and, in fact, may often be incompatible with leadership. What Americans may celebrate as compassion, therefore, many Britons would deride as weakness.

In Just Health Care (15), the American philosopher Norman Daniels confronts the central intergenerational issue. Since each generation ages, he argues, the transfer of resources from younger to older in effect amounts to one generation's saving for its own future needs. This converts "an interpersonal distribution problem, with all its attendant worries about age-bias, into an intrapersonal problem of rational or prudential savings." From this perspective, "the age criterion operates within a life and not between lives" and "each moment of life is equally valuable" (15, pp. 96, 98, 104-5). [Daniels, however, contends that "pure age-rationing is morally permissible under certain, very specific, and restrictive conditions," including "possibly" British policy toward persons with end-stage renal disease (15, p. 84)].

In his thoughtful Am 1 My Parent's Keeper? (16), Daniels elaborates on the theme of intergenerational equity. Rather than setting the young off against the old, he proposes that the younger generation regard the older generation as "our future selves." This suggests aging policies based on a "prudent lifespan account" administered by "prudent deliberators" operating behind a time-neutral Rawlsean veil that prevents them from knowing what age in anyone's life is "now." Their task would be to allocate health care resources over a person's lifetime. Neither the old nor the young could object to their allocation because all are beneficiaries of a health care system that is not skewed by self-interest.

Strength Enough 33

Of course, as Daniels concedes, one difficulty with this is the inherent uncertainty that clouds our view of the future. Few persons a half century ago could have accurately predicted that they would contract end-stage renal disease or that treatments for the condition would be devised. Nor, platitudes about "equally valuable" moments of life to the contrary notwithstanding, can persons predict that at that remote point they will even wish to stay alive.

For these kinds of reasons, investment always raises the question as to whether uncertain future benefits are worth certain present costs. In determining the answer, future returns are discounted for t ime to reflect the fact that present dollars (or pounds sterling) are more valuable than future ones. And the more distant the projected benefits, the greater the accumulated discount because the discounting process operates over more years. Thus, $10,000 set aside for a year's dialysis, if discounted at the very modest annual rate of five percent, would have a value of only $376.90 in twenty years -- and this does not take account of inflation. Viewed as an intergenerational transfer, therefore, setting aside money for future dialysis appears grotesquely inefficient, putting one in mind of a bucket with more leaks than bottom.

Of course, literally setting aside money is obviously not the pattern of age-based benefits. For if history is any guide, the elderly receive in benefits vastly more than they pay into the system. In other words, what exits is exactly the intergenerational transfer system that Daniels would deny.

And viewed as inter temporal or intergenerational, the system is not voluntary but coercive. Thus, although Daniels speaks repeatedly of persons choosing to save, in truth the choice is not theirs at all, except in the indirect sense that they chose representatives who voted for the system and continue to support it.

It is this element of coercion that offends libertarians like H. Tristram Engelhardt, Jr. (17). Of persons with conditions like end- stage renal disease, he writes that their plight is unfortunate -- that is, it is not their fault -- not unfair -- that is, it is not society's fault, either. And societies, no more than individuals, are obligated to pay to redress a problem for which they were in no way responsible. Needs do not create rights.

To most persons, however, the libertarian stress on private preferences seems unbearably harsh and the world it embodies too full of insecurity. Its extreme individualism also strikes most of us as unrealistic because we do not -- and cannot -- live except as members of a community. And what differentiates members of a community from everyone else is precisely that the members owe the community a port ion of their allegiance and resources, and the community owes the members a modicum of security and welfare (18, chap. 3). Of

34 T. Halper

course, notions of what these obligations entail will vary: ancient Athens provided public baths for its citizens but not health care; Britain has made a reverse set of choices. They are not likely to be upset soon.

(It is also possible to argue that the line demarcating the unfortunate from the unfair is full of cracks. If a refusal or failure to act can be considered action (19), society can be faulted for inadequately funding research, screening, treatment, and other programs relating to hypertension, diabetes mellitus, and other diseases that contribute to ESRF, as well as for not devoting the resources to preventing or curing E S R F itself. When members of a community in these ways refuse or fail to evidence concern and foresight to their fellows, they may be charged with having committed "passive injustice" (20). On the other hand, such a view may embrace a dauntingly long and complex chain of responsibility, and provides no space for the pervasive social fact of scarcity. It thus may be too unrealistic to win acceptance.)

What neither Daniels nor Engelhardt considers is the rather conventional American idea that individuals should be encouraged to look after themselves -- by purchasing insurance or annuities, for example -- and that only if they are too poor to do this should their fellow taxpayers be compelled to help them. According to this view, it is moral and financial folly to discourage people from providing for their own old age and disabilities, to reward them for their lack of foresight, or to aid those who do not require financial assistance. In addition, it reinforces the stereotype of the elderly as weak and dependent and of old age as a period of unrelieved suffering (21). Viewed from this perspective, the great defect of the British system was less the refusal to treat the elderly than the failure to inform society of the fact, so that people could avail themselves of the opportunity to look out for themselves. For the British not only ration health care; they also rat ion knowledge of rationing, hiding the process and the product from public view and democratic accountability.

Now in the British context, where the Heal th Service purports to aim at universality without regard to age, such considerations of age- based rationing may appear irrelevant intrusions. Yet in certain respects, the NHS was not constructed with elderly end-stage renal disease patients in mind.

In the first place, there has always existed a broad consensus that the Heal th Service should concentrate on providing the "services that most people use most of the time" (22, p. 19). Uncommon diseases requiring expensive, high technology therapies do not fit easily within such a consensus.

Second, the chief rationale for considering health care a social

Strength Enough 35

and not a personal affair is that there is seen to be a social interest in restoring the ill to normal functioning so that they can help bear society's burdens and a social interest in maintaining a sense of fellow feeling and solidarity. "People want rights," as Tawney declared three- quarters of a century ago, "in order that they may perform duties" (23, p. 56). The aged dialysis patient is unlikely to be able to do much in the way of performing many duties, particularly of an economically productive kind.

Third, a central operational assumption has always been that the Health Service should respond to professionally determined need, rather than to consumer determined demand (24). Structurally and ideologically, the system is biased toward providers, sometimes at the expense of patients. Providers have, for the most part, taken for granted that rationing end-stage renal disease treatment to the disadvantage of the agecl is a self-evident necessity, which a rough utilitarianism -- more a state of mind than a philosophy -- justifies with ease.

In all this, it is essential that end-stage renal disease not be viewed in isolation, but rather as one worthy claimant among many. Prior allocative decisions or patterns -- "What proportion of available resources ought to be devoted to public purposes? And among public purposes, to health care?" -- set limits on what can be made available for end-stage renal disease. And exogenous factors -- the public's perception of the government, its health proposals, and end-stage renal disease -- help to govern what allocations ultimately are made. And to the extent that end-stage renal disease is a chronic condition of the elderly, intergenerational transfers are involved in its treatment.

Overwhelmingly, the British public favors expanding treatment patterns. Not only would such expansion protect them and their families in time of need; it also seems clearly to be what one Englishman called the "decent thing to do." But Britain, like other democracies, does not permit the public to decide issues but rather to choose leaders (25). And to the government, bureaucrats, and many health providers, the dictates of simple decency rarely seem simple. Policy makers must concern themselves not only with benefits but also with risks, costs, and precedents. They must confront the melancholy but ineluctable truth that good deeds -- even rescuing lives -- require not only high motives but also real sacrifices. And sometimes, they believe, they must gird themselves to have strength enough to endure the misfortunes of others.

36 T. Halper

The author is grateful to the National Endowment for the Humanities Travel to Collections Program, whose generous award facilitated the research on which this essay is based.

R E F E R E N C E S

1. Ferriman A. 1000 kidney patients die because treatment unavailable. London Times., Mar. 20, 1980; p. 4, col 1.

2. Massam A. Doctor attacks "kidney scandal," London. Evening Standard. 1982: Jan. 7, 14 (col. 6).

3. Wing AJ. The impact of financial constraint. In: Scorer G, Wing AJ; eds. Decision making in medicine: The practice o f its ethics. London UK: Arnold Press; 1979; 151-64.

4. Chester TE. Rationing health care: The British experience in the 1980s. Frontiers o f Health Service Management. 1987; 3:3-30.

5. Kervasdoue J. et al; Technology and the need for health care rationing. In: de Kervasdoue J., et al.; eds. The end o f an illusion: The future o f health policy in western industrialized nations. Berkeley, CA: University of California Press; 1984: 85-109.

6. Frocht A, Fillet H. Renal disease in the geriatric patient. Journal o f the American Geriatric Society. 1984; 32:28-43.

7. Avorn J. Benefit and cost analysis in geriatric care: Turning age discrimination into health policy. New England Joto~ml o f MedichTe. 1984; 310:1294-1301.

8. European Dialysis and Transplant Association-European Renal Association. Combined Report in Regtdar Dialysis and Transplantation in Europe. London, UK: Springer International; 1989.

9. Public Law 92-603; Section 2991; 1972. 10. ltearings on national health insurance proposals before the house cornrnittee on

ways and means, 92d Cong., 1st Sess., pt. 7. (Statement of Shep Glazer.); 1971. 11. Rettig R. The policy debate on patient care financing for victims of end-stage

renal disease. Law and Contemporary Problems. 1972; 40:196:230. 12. Schelling TC. Choice and consequences. Cambridge, MA: Harvard University

Press; 1984. 13. Blumstein JF. Constitutional perspectives on governmental decisions affecting

human life and health. Law and Contemporary Problems. 1976; 40:231-305. 14. Machiavelli N. The prince and the discourses. New York, NY: Modern Library;

1940. 15. Daniels N. Just health care. New York, NY: Cambridge University Press; 1985. 16. Daniels N. A m I my parents' keeper? An essc O, on fltstiee between the young and

the old. New York, NY: Oxford University Press; 1988. 17. Englehardt HT, Jr. Shattuck Lecture: A/locating scarce medical resources and

the availability of organ transplantation. New England Journal o f Medicine. 1984; 311:66-71.

18. Walzer M. Spheres o f justice. New York, NY: Basic Books; 1983. 19. Bachrach P, Baratz M. Decisions and nondecisions. American Political Science

Review. 1963; 57: 634-42. 20. Shklar JM. The fear o f injustice. New Haven, CT: Yale University Press; 1990. 21. Halper T. The Double-Edged sword: Paternalism as a policy in the problems of

aging. Milbank Memorial Fund Quarterly. 1980; 58:472-99. 22. Abel-Smith B. Minimum adequate levels of personal health care: History and

justification. Milbank Memorial Fund Quarterly. 1978; 56:7-21.

Strength Enough 37

23. Tawney RM. [1913]. Commonplacebook. Winter JW, Joslin DM, cds. Cambridge, UK: Cambridge University Press; 1972.

24. Klein R. Rationing health care. British Medical Journal 1984; 289:143-4. 25. Schumpeter JA. Capitalism, socialism, and democracy. New York, NY: Harper;

1950.