Leonard M. Fleck

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.

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.

Abstract:Because the demand for intensive care unit (ICU) beds exceeds the supply in general, and because of the formidable costs of that level of care, clinicians face ethical issues when rationing this kind of care not only at the point of admission to the ICU, but also after the fact. Under what conditions—if any—may patients be denied admission to the ICU or removed after admission? One professional medical group has defended a rule of “first come, first served” in ICU admissions, and this approach has numerous moral considerations in its favor. We show, however, that admission to the ICU is not in and of itself guaranteed; we also show that as a matter of principle, it can be morally permissible to remove certain patients from the ICU, contrary to the idea that because they were admitted first, they are entitled to stay indefinitely through the point of recovery, death, or voluntary withdrawal. What remains necessary to help guide these kinds of decisions is the articulation of clear standards for discontinuing intensive care, and the articulation of these standards in a way consistent with not only fiduciary and legal duties that attach to clinical care but also with democratic decision making processes.

Abstract:The American College of Physicians in its ethics manual endorsed the idea that physicians ought to improve their ability to provide care to their patients more parsimoniously. This elicited a critical backlash; critics essentially claimed that what was being endorsed was a renamed form of rationing. In a recent article, Tilburt and Cassel argued that parsimonious care and rationing are ethically distinct practices. In this essay I critically assess that claim. I argue that in practice there is considerable overlap between what they term parsimonious care and what they define as rationing. The same is true of the Choosing Wisely campaign endorsed by the American Board of Internal Medicine. In both cases, if the goal is to control healthcare costs by reducing the use of marginally beneficial care that is not cost effective, then a public conversation about the justness of specific choices is essential.

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.

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.

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 ..

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

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

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