Leonard M. Fleck

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? That question is the focus of this essay. Put another way: relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? On the one hand, we might see the terminally ill as being among the “medically least well off” and therefore deserving very high priority. On the other hand, we might see them as squandering vast medical resources for marginal medical benefits, thereby denying needed resources to others who would benefit much more. We begin the essay by making a number of morally relevant distinctions with regard to the category of “being terminally ill.” We note, given contemporary medicine, that individuals may be terminally ill several times in the course of a life. Not all such circumstances make equal just claims to needed health care. We also note that our conceptions of health care justice are ultimately incapable of making very fine-grained, morally justified rationing judgments in complex medical circumstances. We conclude that we must finally rely upon fair processes of rational democratic deliberation to articulate such judgments for our own future, possibly terminally ill selves, thereby undercutting the rhetoric of “death panels.”.

This review discusses four recently published textbooks in health care ethics. The theme I emphasize here is that the more common health care ethics issues addressed in these texts are of enormous personal, political and professional relevance today. More specifically, these issues have been enormously socially divisive, as the rhetoric about “death panels” illustrates. A course in health care ethics ought to provide students (future citizens in a liberal, pluralistic, democratic society) with the skills they need to address these issues in a mutually respectful way with fellow citizens who disagree with them. Two of these textbooks provide a nice balance of articles over a suitable range of topics, including cases for discussion and much helpful pedagogical material. The third textbook is deficient in pedagogical resources. The fourth offers a distinctive cultural approach to addressing an array of bioethics issues, including religious perspectives.

What should be the content of a package of health care services that we would want to guarantee to all Americans? This question cannot be answered adequately apart from also addressing the issue of fair health care rationing. Consequently, as I argue in this essay, appeal to the language of "basic," "essential," "adequate," "minimally decent," or "medically necessary" for purposes of answering our question is unhelpful. All these notions are too vague to be useful. Cost matters. Effectiveness matters. The clinical circumstances of a patient matters. But what we must ultimately determine is what we mutually agree are the just claims to needed health care of each American in a relatively complex range of clinical circumstances. Answering this question will require a public moral conversation, a fair process of rational democratic deliberation aimed at defining both just claims to needed health care and just limits

I agree with Professor ter Meulen that there is no need to make a forced choice between “justice” and “solidarity” when it comes to determining what should count as fair access to needed health care. But he also asserts that solidarity is more fundamental than justice. That claim needs critical assessment. Ter Meulen recognizes that the concept of solidarity has been criticized for being excessively vague. He addresses this criticism by introducing the more precise notion of “humanitarian solidarity.” However, I argue that these notions are still not precise enough and are in need of behavioral translation, especially in relation to the problem of fair health care rationing. More specifically, I argue that translation ought to take the form of a well-ordered process of rational democratic deliberation, which I describe and defend in this essay. Such a process is what is required to construct a working model of just solidarity as opposed to a merely abstract idealization of just solidarity

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? This is the question that will be the focus of this essay. Another way of asking our question would be the following: Relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? Should any of the health care needs of the terminally ill be assigned very low priority? Or should all their health care needs be assigned the highest priority? If we reflect a bit, we will find ourselves greatly internally conflicted. On the one hand, the “caring” side of our moral self might see terminally ill individuals as being among the “medically least well off,” and therefore, deserving virtually any medical resources that will yield any degree of good for them.

Few in our society believe that access to health care should be determined primarily by ability to pay. We believe instead that society has an obligation to assure access to adequate health care for all. This is the view explicitly endorsed in the President's Commission Report Securing Access to Health Care. But there is an important moral ambiguity here, for this obligation may be construed as being either beneficence-based or justice -based. A beneficience-based construal would yield a much weaker obligation with respect to the distribution of health care. In the first section of this paper I argue that the President's Commission is committed only to this weaker construal of this obligation. In the second section I argue that such a beneficence-based obligation is really rooted in a libertarian conception of justice, similar to that recently articulated by Engelhardt, and that this conception is seriously flawed when it comes to effecting a just distribution of health care

Are DRGs just? This is the primary question which this essay will answer. But there is a prior methodological question that also needs to be addressed: How do we go about rationally (non-arbitrarily) assessing whether DRGs are just or not? I would suggest that grand, ideal theories of justice (Rawls, Nozick) have only very limited utility for answering this question. What we really need is a theory of “interstitial justice,” that is, an approach to making justice judgments that is suitable to assessing the social practices and institutions that comprise the interstices of our social life as opposed to its basic structure. Rawls's appeal to “our considered moral judgments” provides us with a useful starting point for this task, which we shall discuss in the first part of this essay. In the second part, we shall actually assess DRGs from the perspective of interstitial justice. What we shall show is that DRGs violate a large number of our considered judgments regarding a just approach to financing health care for the elderly in a cost-effective manner. This is true to such an extent that efforts to reform DRGs and make them fairer, such as the recent effort by Robert Veatch, should be abandoned. In the concluding section of the essay we discuss one especially pernicious feature of DRGs, namely, that they represent an invisible approach to rationing access to health care. In the minds of many this is one of the virtues of DRGs. That claim needs critical examination.