Just health care rationing: a democratic decisionmaking approach.

• Author: Fleck, Leonard M.
• Position: The Law and Policy of Health Care Rationing: Models and Accountability

INTRODUCTION

Michael S. was born in 1984 to unmarried teenage parents who were without health insurance. He was born with necrotic small bowel syndrome. Surgery at birth determined that he would not be able to process food in the normal way. Hence, he would have to remain in an intensive care unit, fed via total parenteral nutrition (TPN). After six months the hospital administrator approached the attending physician and pointed out that Michael was responsible for $250,000 in uncompensated care costs. Michael could live another six to eighteen months, which would mean potential uncompensated care costs of one million dollars. The administrator reminded the physician that this was the only hospital in town that provided charity care to the poor, and that if Michael remained in the hospital then the emergency room would have to be closed to all the poor, except those with true life-threatening medical problems. The state was willing to care for Michael and place him in a nursing home, but it would not provide TPN, which would mean Michael would die of infection and/or starvation within two weeks.(1)

This case raises numerous profound moral and political issues. How should a good doctor respond to this administrator, a doctor who wants to be both just and caring, a doctor who wants to be both a fair allocator of limited health resources and a loyal advocate of this patient's best interests? How should a good administrator respond to a doctor or parents who want Michael to live as long as possible when that administrator is responsible for meeting a broad range of other legitimate health needs that are, admittedly, not now visibly embodied, as is Michael? If the members of this community want to be both just and caring, then how ought they respond to Michael's needs? We need to keep in mind that there are hundreds of infants in this community who have serious unmet or inadequately met health needs; and if the members of this community want to support Michael generously to show that they care, they must also confront candidly that they risk treating all these other children unjustly if they are unwilling to treat them with equal generosity. The astute reader with a little philosophic training might object at this point that there is a radical difference between justice and generosity, and that a generous response by the community ought not raise questions about justice. That response, however, is too easy. Generosity is morally praiseworthy only if the more basic demands of health care justice have been satisfied.

There are two variations on the case of Michael that need to be considered. First, if we know for certain that Michael is doomed to die by the age of two, then can we think of ourselves as just and caring if we refuse to spend that first $250,000? That is, if we provide Michael with comfort care only and allow him to die shortly after birth, would we have treated Michael unjustly?

The alternative scenario arises when death is uncertain.(2) Suppose that Michael would die by age two from the TPN treatments, which eventually fatally compromise liver function, but that a surgeon was willing to do a liver transplant at a cost in excess of $300,000, which would allow Michael to live to age four. At that point in time (still in the future) the surgeon is also prepared to attempt a liver and bowel transplant at a cost that might approach $500,000. If Michael were denied one or both of these transplants, would we be justifiably accused of treating him unjustly and uncaringly?

The reader will note that I have deliberately left unspecified the "we" in the preceding paragraphs, for that is the central problem to be addressed in this essay. In a liberal society that claims to be just and caring, who ultimately should have responsibility for determining what counts as a fair allocation of always limited health resource? My reply is that in a liberal democratic society this ought to be the responsibility of each and every citizen, and that it is through processes of informed public discourse that such decisions ought to be made.

In affirming this view I am rejecting the view that any purely private decisionmaking mechanism is morally defensible, whether that is an impersonal mechanism such as markets, or more personal approaches wherein doctors, families, administrators, insurers, or employers negotiate these decisions. I am not rejecting absolutely such private decisionmaking mechanisms; rather, my claim is that their appropriate use will be circumscribed by the decisions that emerge from this broader process of informed public discourse. Similarly, I am rejecting the view that governmental mechanisms, whether legislative, judicial, or administrative, should be the primary mechanisms through which these decisions are made, though I readily concede that they have a necessary role to play in implementing and legitimating the decisions that are a product of public conversation. Finally, although expertise related to health economics, organizational behavior, and other disciplines is necessary to inform the public's dialogue, I reject the view that experts of any kind should have decisional authority regarding allocational and rationing decisions, except in a limited range of circumstances where such authority has been granted as a result of broad, democratic public conversations.

This essay begins with a long prefatory argument; its purpose is to lay out intellectual presuppositions that provide the framework for the central problem of this essay. Specifically, I need to show that the problem of health care rationing is fundamentally a moral and political problem, and not fundamentally an economic, managerial, organizational, or technological problem (i.e., the kind of problem that might best be solved by tinkering with economic incentives, restructuring delivery systems and professional behavior, or by technological ingenuity that finds innovative ways of unclogging occluded arteries more efficiently). For if any of these ways of characterizing the problem were ultimately correct, then some assortment of economists, bureaucrats, and technocrats would have ultimate responsibility for finding an appropriate resolution that would be expressed through market reforms, tighter regulations, and detailed practice guidelines. That is, the informed democratic consensus approach which I advocate would then be entirely wrongheaded. But if health care rationing is fundamentally a moral and political problem, then a democratic consensus approach is at least prima facie reasonable.

Some readers might find intellectually disconcerting the juxtaposition of morality and politics, especially if this carries the suggestion that some of our fundamental moral beliefs regarding justice might be a product of some sort of democratic conversation. In my judgment, however, this is precisely the view that is required if we are going to come to an uncoerced agreement on matters of social policy in a liberal democratic culture. The political philosophical tradition which I draw from is that of John Dewey, the later Rawls, and Richard Rorty.(3) This is essentially a pragmatic philosophic tradition that eschews metaphysically or theologically based rational certitude for our moral and political beliefs. Instead, this tradition asserts that it is enough for a liberal democratic society to ground its moral and political beliefs in reasoned agreement since it can never escape the contingencies of its culture. From a Deweyan perspective, we can never get beyond experimental reason to some eternal moral truth.(4) For Rawls, our objective is not to find a conception of justice suitable for all societies, but rather, "to settle a fundamental disagreement over the just form of basic institutions within a democratic society under modern conditions."(5) For our purposes we are seeking a conception of health care justice that speaks to our disagreements regarding a fair distribution of health care in our society. I now turn to my expanded argument.

1. HEALTH CARE: A MORAL GOOD, A PUBLIC GOOD

   How health care is distributed is a moral matter; specifically, it is a matter of social justice. This is a rejection of the claim that health care is simply another commodity properly distributed in accord with ability to pay. There seems to be a widely agreed upon moral judgment in our society, for example, that it would be fundamentally wrong to auction off transplantable hearts or livers to the highest bidder. Similarly, the case of Michael should not occasion even minimal moral reflection if health care is properly distributed in accordance with ability to pay. But the fact is that we are morally troubled when we are confronted with cases like that of Michael. This is not just a psychological fact. One moral reason would seem to be that we have very effective health technologies today that often make the difference between life and death. This is one of those contingent facts that was not true prior to 1900. It is terribly unfortunate when nature causes the death of a child. That does not trouble our conscience. But when we conspire with nature to allow the death of a child, then our social conscience ought to be troubled. Another moral reason, as Daniels has argued, is that access to needed health care protects fair equality of opportunity in our society in much the same way that education does:

   [E]ducational needs, like health-care needs, differ from other basic needs, such as the need for food and clothing, which are more equally distributed between persons. The combination of their unequal distribution and their great strategic importance for opportunity puts these needs in a separate category from those basic needs we can expect people to purchase from their fair income shares, like food and shelter.(6)

   My claim that the distribution of health care is a matter of social justice is also a rejection of the view that it is a matter of social...