The phrase "personalized medicine" has a built-in positive spin. Simple genetic tests can sometimes predict whether a particular individual will have a positive response to a particular drug or, alternatively, suffer costly and debilitating side effects. But little attention has been given to some challenging issues of justice raised by personalized medicine. How should we determine who would have a just claim to access particular treatments, especially very expensive ones? How effective do those treatments need to be?If there were a (...) thick, bright line separating minimal responders from maximal responders, then we could allocate these treatments in a fair and cost-effective way. But there is no bright line. The .. (shrink)

: New genetic technologies continue to emerge that allow us to control the genetic endowment of future children. Increasingly the claim is made that it is morally "irresponsible" for parents to fail to use such technologies when they know their possible children are at risk for a serious genetic disorder. We believe such charges are often unwarranted. Our goal in this article is to offer a careful conceptual analysis of the language of irresponsibility in an effort to encourage more care (...) in its use. Two of our more important sub-claims are: A fair judgment of genetic irresponsibility necessarily requires a thick background description of the specific reproductive choice; and there is no necessary connection between an act's being morally wrong and its being irresponsible. These are distinct judgments requiring distinct justifications. (shrink)

This essay argues that our national efforts at health reform ought to be informed by eleven key lessons from Oregon. Specifically, we must learn that the need for health care rationing is inescapable, that any rationing process must be public and visible, and that fair rationing protocols must be self-imposed through a process of rational democratic deliberation. Part I of this essay notes that rationing is a ubiquitous feature of our health care system at present, but it is mostly hidden (...) rationing, which is presumptively unjust. Part II argues that the need for health care rationing is inescapable. Although Oregon is flawed as a model of health rationing, it gives us worthy moral lessons for health reform at the national level, which I analyze and defend in Part III. The most significant of these lessons is the importance of rational democratic deliberation in articulating fair rationing protocols for a community. In Part IV I sketch the philosophic justification for this approach and respond to some important criticisms from Daniels. Keywords: cost containment, democratic deliberation, fairness, justice, rationing CiteULike Connotea Del.icio.us What's this? (shrink)

Health reform must include health care rationing, both for reasons of fairness and efficiency. Few politicians are willing to accept this claim, including the Clinton Administration. Brown and others have argued that enormous waste and inefficiency must be wrung out of our health care system before morally problematic cost constraining options, such as rationing, can be justifiably adopted. However, I argue that most of the policies and practices that would diminish waste and inefficiency include implicit (and therefore morally problematic) rationing. (...) Critics of rationing see as its most morally and psychologically troubling feature that an identified individual is denied potentially beneficial care. That psychic anguish may not be eliminable, and perhaps ought not be eliminated. But if rationing protocols are fairly adopted through a process of free and informed rational democratic deliberation to which all have access, the moral objections are largely overcome. Such a process is possible only if implicit rationing is recognized and rejected. Keywords: Justice, health care rationing, health reform, democratic decision-making CiteULike Connotea Del.icio.us What's this? (shrink)

The debate around age-based healthcare rationing was precipitated by two books in the late 1980s, one by Daniel Callahan and the other by Norman Daniels. These books ignited a firestorm of criticism, best captured in the claim that any form of age-based healthcare rationing was fundamentally ageist, discriminatory in a morally objectionable sense. That is, the elderly had equal moral worth and an equal right to life as the nonelderly. If an elderly and nonelderly person each had essentially the same (...) medical problem requiring the same medical treatment, then they had an equal right to receive that treatment no matter what the cost of that treatment. Alternatively, if cost was an issue because the benefits of the treatment were too marginal, then both the elderly and nonelderly patients requiring that treatment ought to be denied it. If there were something absolutely scarce about the treatment, then some fair process would have to be used to make an allocation decision. (shrink)

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. (shrink)

My task is to provide some critical commentary on the preceding essays. My unfortunate conclusion will be that the issues that are their primary focus are more likely to become more ethically intractable over the next several years as medicine progresses. I do not see any easy or obvious way to avoid this conclusion.

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. (shrink)

In a previous essay I criticized Engelhardt's libertarian conception of justice, which grounds the view that society's obligation to assure access to adequate health care for all is a matter of beneficence [1].Beneficence fails to capture the moral stringency associated with many claims for access to health care. In the present paper I argue that these claims are really matters of justice proper, where justice is conceived along moderate egalitarian lines, such as those suggested by Rawls and Daniels, rather than (...) strong egalitarian lines. Further, given the empirical complexity associated with the distribution of contemporary health care, I argue that what we really need to address the relevant policy issues adequately is a theory of health care justice, as opposed to an all-purpose conception of justice. Daniels has made an important start toward that goal, though there are some large policy areas which I discuss that his account of health care justice does not really speak to. Finally, practical matters of health care justice really need to be addressed in a non-ideal mode, a framework in which philosophers have done little. (shrink)

Warwick Heale has recently defended the notion of individualized and personalized Quality-Adjusted Life Years in connection with health care resource allocation decisions. Ordinarily, QALYs are used to make allocation decisions at the population level. If a health care intervention costs £100,000 and generally yields only two years of survival, the cost per QALY gained will be £50,000, far in excess of the £30,000 limit per QALY judged an acceptable use of resources within the National Health Service in the United Kingdom. (...) However, if we know with medical certainty that a patient will gain four extra years of life from that intervention, the cost per QALY will be £25,000. Heale argues fairness and social utility require such a patient to receive that treatment, even though all others in the cohort of that patient might be denied that treatment. Likewise, Heale argues that personal commitments of an individual, that determine how they value a life-year with some medical intervention, ought to be used to determine the value of a QALY for them. I argue that if Heale’s proposals were put into practice, the result would often be greater injustice. In brief, requirements for the just allocation of health care resources are more complex than pure cost-effectiveness analysis would allow. (shrink)

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.”. (shrink)

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. (shrink)

This is a book for reflective laypersons and health professionals who wish to better understand what the problem of healthcare rationing is all about. Ubel says clearly in the Introduction that it is unlikely that professional economists or philosophers are going to be very satisfied with this effort. For him it is more important (p. xix). This is a reasonable aim made achievable by Ubel's clear and engaging writing style. Probably the people who most need to be drawn into these (...) debates are physicians and medical students, this because one of Ubel's central claims is that the need for is both inescapable and sometimes morally permissible. What he wants to reject is the view of many physicians that bedside rationing by physicians is never morally permissible and that healthcare costs can be contained without having to resort to rationing of any kind. Before I explore this point any further, it is necessary to summarize the larger argument of this book. (shrink)

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. (shrink)

I have never doubted that the problem of inequalities in health status and access to needed care is a difficult ethical and political challenge. After reading the essays in Understanding Health Inequalities and Justice: New Conversations across the Disciplines, edited by Mara Buchbinder, Michele Rivkin-Fish, and Rebecca Walker, I concluded that despair was the only suitable response in the face of daunting ethical and political complexity. The editors of this volume have three questions in mind that they asked contributors to (...) address. How do scholars from various disciplines approach relations between health inequalities and ideals of justice? Social scientists want to offer empirical descriptions of inequalities in health status across a range of social groups, but there are numerous ways of offering such descriptions. Are they all “correct”? Philosophers and medical ethicists want to make normative judgments regarding which inequalities matter, ethically speaking. So do we need to know when considerations of justice are relevant to assessing health inequalities and which considerations of justice are most relevant in specific contexts? Ultimately, the question is which of these scholarly approaches is most useful for improving health policy. (shrink)

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. (shrink)

This personal narrative tugs at the heart strings. However, personal narratives are not sufficient to justify public funding for any screening policy. We have to take seriously the ‘just caring’ problem. We have only limited resources to meet virtually unlimited health care needs. No doubt, screening tests often save lives. The author wants public funding for prostate-specific antigen screening for prostate cancer. However, why only prostate cancer? Numerous cancers at various stages can be screened for. Are all of them equally (...) deserving of public funding? What about screening for a very long list of other life-threatening medical disorders? There is nothing ethically special about cancer. Where does the money come from to pay for all these screening tests? Do we reduce expensive life-prolonging care for patients in late-stage diseases? Ultimately, a balance must be struck between saving statistical lives through screening and saving identifiable lives in the intensive care unit. Achieving a just balance requires rational democratic deliberation as justification for these choices, not personal narratives. (shrink)