Hustings Center Report, November-December 1996

Is Justice Enough? Ends and Means in Bioethics

here can be little doubt that the domi- nant social issue of the 1960s and 1970s was that of justice and equality. It in- spired the development of many fresh T welfare policies and was a potent moti-

vating force in the advent of Medicare and Medi- caid, both thought (mistakenly as it turned out) to be the forerunners of universal health care. John Rawls’ 1972 study A Theory OfJUstice was not only a powerful work in its own right but perfectly in step with the times. Given that context, it was hardly sur- prising that the field of bioethics saw a great surge of writing and debate on issues of justice and health care. That was, and st i l l is, a central topic.

Far less important for many years was any serious discussion of the ends of medicine. To be sure, there was and is a field known as the philosophy of medi- cine that has given considerable attention to the na- ture of medicine. But the discussion in that field- which was often technical and historical in any case, selfconsciously academic and scholarly-proceeded independently of the interest in health care equality. And viceversa.

In retrospect, that seems an odd bifurcation. How is it possible to have a full examination of a field as dynamic and fastchanging as health care without-simultaneously-asking some basic ques- tions about what health care is supposed to give us and do for us? Norman Daniels, in his fine work on justice and health care, has come as close as any one to attempting to find the specific link between the ends of health care and fair access to it. By his use of the concept of species-typical functioning as the goal of medicine he has sought to bring ends and means together. That is surely a traditional and conventionally d i d concept, and in his hands has proved exceedingly useful.

But it is in the end too thin and formal a con- cept to give us the kind of help we need. Its main shortcoming is that it does not well take account of two dominant realities of modern medicine. One of them is the constant introduction into the health care system of new technologies, most of them ex- pensive and of greater benefit to individual than to population health. Advances in organ uansplanta- tion would be a good example of this kind of de- velopment. The pursuit of species-typical function- ing for some classes of patients can be enormously costly-and probably achieved only at the cost of

limiting resources for other classes of patients. Daniels has, I would note, been working on this problem in recent years-but doing so with the lan- guage and concepts of equality rather than those of the ends of medicine and health care.

The other reality seems to me even more im- portant The impact of modern medical progress is often to force us to go beyond, and thus to redefine, what constitutes “species-typical” functioning. This is happening most notably in the field of aging, where one of the aims of the medical branch of the anti-ageism movement is to distinguish sharply b e tween getting sick and getting old. In the ambitions of medical research, and now and then in its actual results, the ancient species-typical pattern of increas- ing illness, dementia, and frailty in old age can someday be vanquished the curve of morbidity can be squared. Medical progress has served to redefine the statistical notion of normality, and it is no less markedly beginning to dangle before our eyes the optimization or even enhancement of species func- tioning. Some now argue, moreover, that there is no real difference between normalizing and opti- mizing anyway.

The relationship between medical research and fairness in health care is particularly important in this context, and also little explored. What are fair and reasonable research priorities? When can it be said that no further progress is socially necessary? What kinds of research exacerbate an unfair distri- bution of resources, or enhance a fair one?

For both of the reasons I have cited-the cost of medical progress, on the one hand, and its power to redefine normality, on the other-there can be no full discussion of equality in health care without an equally full discussion of the substantive goods and goals that medicine and health care should pur- sue. A failure to join these two discussions helps ac- count for the long-standing difficulty of (1) deter- mining what ought to count as a decent and fair package of health care for everyone; (2) the recent failure of the debate on medical “htility” to fmd much substance or agreement; (3) the vexing but necessary determination of how much and what kind of health to pursue for the elderly, where the possibilities are inherently (if not actually) limitless; (4) and what kind of health care to provide to those patients where the only available options turn out to be exceedingly costly.

Hastings Center Report, Nwember-December 1996

Bioethics as a field has shown an aversion, or at least re- luctance, to asking substantive questions about the human good or the ends of medicine. It has been prone to adopt for- malistic criteria, on the one hand-essentially empty of con- tent-r procedural criteria, on

the other. It has in that respect deferred all too quickly to the supposed demands of pluralism, and the no less supposed resistance of postmodern in- tellectuals to tolerate any fraternizing with goals and ends of any kind. Yet unless there can be a discus- sion of the goals of medicine in the future as rich as that ofjustice and health care has been, the latter problem will simply not admit of any meaningful solution. We can settle for a purely procedural and political solution, but we do not have to.

Norman Daniels

Justice, Fair Procedures, and the Goals of Medicine

n his influential works, Daniel Callahan has argued that concerns about justice do I not carry us far enough in thinking about

the goals of health care reform, claiming that justice is “too thin and formal a concept to give us the kind of help we need.” It fails to address the dra- matic way in which new technologies expand medi- cal capabilities and the “need“ for these services, and even modify our notion of normal functioning. Callahan’s proposal is that we clarify our social Val- ues by focusing on what we collectively agree should be the goals of medicine.

I want to suggest a mechanism for bridging the gap between my interest in justice and Callahan’s interest in goals. In particular, I will suggest haw a social conversation about the goals of medicine can be advanced if we induce or require insurers and managed care organizations to adopt publicly ac- countable procedures for deciding when to cover new technologies and when to impose limits on other treatments.

On my view, a health care system-public health and medical services of all types-should be de signed to promote normal functioning (more ex- actly, “specieqpical” normal functioning), because doing so makes an important contribution to the protection of equality of opportunity.’ The central

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idea is that disease and disability restrict the range of opportunities individuals have open to them; whereas health care protects it. Although health care is an especially important good because of its contribution to opportunity, it is not our only im- portant good. Reasonable and fair choices must be made about how much to invest in health care and how much in other kinds of goods, like education or job creation and training, which also promote equal opportunity. Fair decisions must be made about how to meet competing needs within a lim- ited budget to protect opportunity for the whole population.

This account of justice is more robust than Cal- lahan admits: It has implications for access and the relative importance of different kinds of health care, and it rules out some kinds of constraints on limits to services. My goal here, however, is to concentrate on a crucial point of agreement, not disagreement, with Callahan. Recently I have argued that a prin- ciple assuring equality of opportunity, like other general principles of distributive justice, is too in- determinate to solve some key rationing problems.‘ The concern for equal opportunity tells us, for ex- ample, that we must give some priority to those with the most restricted opportunities, but it cannot give a principled account of how much priority to give. Similarly, we know that to protect opportunity in a whole population, we must sometimes favor the ag- gregation of modest benefits to larger numbers over significant benefits to very few. Here too we have no principled account of how to aggregate.’ Sii- larly, I believe we do not know how to solve in a principled way the problem of balancing the p r e motion of best outcomes with the promotion of fair opportunity.

When general principles of distributive justice fad to give principled solutions, we must either look for more finegrained principles, or we must turn to Eair procedures and treat their outcomes as fair. Just as general principles of justice prove too inde terminate to solve crucial rationing problems, so too do general specifications of the “goals” of medicine. Agreeing, for example, that reducing “premature death” is a reasonable goal of medicine while elimi- nating all fatal disease is not‘ does not provide us with solutions to the kinds of rationing problems noted here.

We are pushed instead to emphasize fair, pub licly accountable procedures. Only such procedures can establish the legitimacy of setring limits for bene- ficial medical services. This is especially true for pub lic systems, where rationing often is carried out cov- ertly and hidden in budget setting practices, and it is particularly pressing in our mixed system, where the grounds for decisionmaking may even be viewed as “trade secrets.” Why should a patient or a clini- cian who takes her agency role seriously accept lim- its set by managed care organizations? For those lim- its to seem fair and reasonable, they would have to reflect concerns about how to meet the more im-

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