Principlism, the bioethical theory championed by Tom Beauchamp and James Childress, is centered on the four moral principles of beneficence, non-maleficence, respect for autonomy, and justice. Two key processes related to these principles are specification—adding specific content to general principles—and balancing—determining the relative weight of conflicting principles. I argue that both of these processes necessarily involve an appeal to human goods and evils, and therefore require a theory of the good. A significant problem with principlism is that it lacks a (...) theory of the good and consequently does not have an adequate solution to the problems of specification and balancing. My conclusion is that principlism must adopt some account of human well-being in order to be a satisfactory bioethical framework. (shrink)

Centre for Applied Philosophy and Public Ethics, The Australian National University, LPO Box 8260, ANU, Canberra ACT 2601, Australia. Email: michael.selgelid{at}anu.edu.au ' + u + '@ ' + d + ' '/ /- ->. Home page: http: //www.cappe.edu.au/staff/michael-selgelid.htmThis article advocates the development of a moderate pluralist theory of political philosophy that recognizes that utility, liberty and equality are legitimate, independent social values and that none should have absolute priority over the others. Inter alia, such a theory would provide a principled (...) means for striking a balance, or making trade-offs, between these values in cases of conflict. Recent developments in public health ethics have made progress in thinking about how to make trade-offs between liberty and utility in particular. While public health ethicists often claim that the least restrictive alternative should be used to achieve the public health goal in question, I argue that a plausible but under-recognized idea is that the least restrictive alternative might sometimes involve improvement of global health via redistributive taxation—i.e., rather than coercive social distancing measures. I conclude by demonstrating that the proportionality principle leaves open the question of when exactly utility outweighs liberty or vice versa—and I argue that, rather than speaking about the morality of liberty-infringing public health interventions in categorical/binary terms, it would be more fruitful and realistic to think and speak about the degree to which a liberty-infringing public health intervention is morally appropriate. CiteULike Connotea Del.icio.us What's this? (shrink)

Kai Nielsen is one of Canada’s most distinguished political philosophers. In a career spanning over 40 years, he has published more than 400 papers in political philosophy, ethics, meta-philosophy, and philosophy of religion. He has engaged much of the best work in Anglophone political philosophy, shedding light on many of the central debates and controversies of our time but throughout has remained a unique voice on the political left. _ Pessimism of the Intellect _presents a thoughtful collection of Nielsen’s essays (...) complemented by an extended reflective interview with Nielsen. This collection allows the reader to grasp the systematic scope of his thought and methodology. (shrink)

Pre-natal genetic tests prompt questions about when, if ever, it is legitimate to choose against a potential life. Philip Kitcher has argued that test-based decisions should turn not on whether a potential life would have a disease (understood as dysfunction), but whether that life would be of low quality. I draw attention to difficulties with both parts of this argument, showing, first, that Kitcher ignores distinctions upon which the case for disease as dysfunction depends; and, second, that his analysis of (...) quality of life tacitly, and controversially, links high quality to normal functioning. Kitcher's chief complaint about disease considerations-that they inappropriately privilege the functional goals of the body over the personal goals of the individual-turns out to bear much more directly upon quality-of-life considerations than disease considerations. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect patients as self-determining agents. In this paper I look (...) at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

Quality improvement mechanisms increasingly use outcome measures to evaluate health care providers. This move toward outcome measures is a radical departure from the traditional focus on process measures. More radical still is the proposal to shift from relatively simple and proximal measures of outcome, such as mortality, to complex outcomes, such as quality of life. While the practical, scientific, and ethical issues associated with the use of outcomes such as mortality and morbidity to compare health care providers have been well (...) rehearsed, the specific concerns associated with the use of quality of life measures in quality of care research have received little attention. As with much research on quality of life there is a tendency to assume that the disadvantages are outweighed by the general virtue of “listening” to patients. In this paper we disagree with this assumption and argue that quality of life is a process, not an outcome. (shrink)

Since the 1970’s epidemiological measures focusing on “health-related quality of life” or simply “quality of life” have figured increasingly as endpoints in clinical trials. Before the 1970’s these measures were known, generically, as performance measures or health status measures. Relabeled as “quality of life measures” they were first used in cancer trials. In the early 2000’s they were relabeled again as “patient-reported outcome measures” or PROMs, in their service to the FDA to support drug labeling claims. To the limited degree (...) that the philosophical literature addresses these measures, it tends to associate them with two major theories of well-being: subjective well-being and the capabilities approach. In this paper, I argue that philosophers ought to treat quality of life measures/proms as a distinct from these theories. I argue that quality of life/proms serve healthcare as vehicles for patient-centered care and this has important consequences for how we theorize these measures. To this end, two requirements set them apart from measures of subjective well-being and the capabilities approach: quality of life/proms need to be patient-directed and inclusive. (shrink)

abstract In this paper we question the basis on which judgements are made about the ‘quality’ of the lives of people whose embodied experience is anomalous, specifically in cases of impairments. In moral and political philosophy it is often assumed that, suitably informed, we can overcome epistemic gaps through the exercise of moral imagination: ‘putting ourselves in the place of others’, we can share their points of view. Drawing on phenomenology and theories of embodied cognition, and on empirical studies, we (...) suggest that there are barriers to imagining oneself differently situated, or imagining being another person, arising in part from the way imagination is constrained by embodied experience. We argue that the role of imagination in moral engagement with others is to expand the scope of our sympathies rather than to enable us to put ourselves in the other's place. We argue for explicit acknowledgement that our assessments of others’ QOL are likely to be shaped by the specifics of our own embodiment, and by the assumptions we make as a consequence about what is necessary for a good quality of life. (shrink)

This paper suggests the adoption of a ‘capability approach’ to key concepts in healthcare. Recent developments in theoretical approaches to concepts such as ‘health’ and ‘disease’ are discussed, and a trend identified of thinking of health as a matter of having the capability to cope with life’s demands. This approach is contrasted with the WHO definition of health and Boorse’s biostatistical account. We outline the ‘capability approach’, which has become standard in development ethics and economics, and show how existing work (...) in those areas can profitably be adapted to healthcare. Cases are used to illustrate the value of adopting a capability approach. (shrink)

This essay examines the goals of care and the exercise of guardianship authority in the long-term care of persons with Alzheimer's disease and other forms of chronic, progressive dementia. It counters philosophical views that deny both agency and personhood to individuals with Alzheimer's on definitional or analytic conceptual grounds. It develops a specific conception of the quality of life and offers a critique of hedonic conceptions of quality of life and models of guardianship that are based on a hedonic legal (...) standard of “best interests.” As an alternative, it proposes a conception of quality of life based on the notions of “semantic agency” and “memorial personhood.”. (shrink)

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives of refusing life-saving treatments or requesting euthanasia of persons with dementia who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented (...) by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. (shrink)

Definition of the problemThe medical-ethical principle of beneficence is directed towards the well-being of patients. In clinical practice, the focus is often on the relief of pain, the elimination of symptoms and the restoration of bodily functioning. However, the significance of these health-related aspects for the overall well-being of patients also depends on individual values, desires, and life plans.ArgumentationAn overemphasis on the subjective perspective of patients on their well-being would admittedly lead to a strong substantial convergence of the two medical-ethical (...) principles of beneficence and respect for autonomy. In addition, it would not be compatible with some of the guiding principles of the medical profession. A mere objective perspective on patient well-being conversely carries the danger of imposing values on individual patients that they do not share. Consequently, actions that are intended to benefit patients instead harm them.ConclusionThrough a more detailed analysis of the relationship between health-related and overall well-being, this paper shows that health is only a relative value in our overall well-being. Basic health-related goods like a sound cardiovascular system or fully functioning lungs have special standing because they are seen as valuable independently of individual preferences and life plans, which means they are of objective value. (shrink)

Proposals for health care cost containment emphasize high-value care as a way to control spending without compromising quality. When used in this context, ‘value’ refers to outcomes in relation to cost. To determine where health spending yields the most value, it is necessary to compare the benefits provided by different treatments. While many studies focus narrowly on health gains in assessing value, the notion of benefit is sometimes broadened to include overall quality of life. This paper explores the implications of (...) using subjective quality of life measures for value assessment. This approach is claimed to be more respectful of patients and better capture the perspectival nature of quality of life. Even if this is correct, though, subjective measurement also raises challenging issues of interpersonal comparability when used to study health outcomes. Because such measures do not readily distinguish benefits due to medical interventions from benefits due to personal or other factors, they are not easily applied to the assessment of treatment value. I argue that when the outcome of interest in value assessment is broadened to include quality of life, the cost side of these measures should also be broadened. I show how one philosophical theory of well-being, Jason Raibley’s “agential flourishing” theory, can be adapted for use in quality of life research to better fit the needs and aims of value assessment in health care. Finally, I briefly note some implications of this argument for debates about fairness in health care allocations. (shrink)

Many believe that it is morally wrong to give lower priority for a liver transplant to alcoholics with end-stage liver disease than to patients whose disease is not alcohol-related. Presumably, alcoholism is a disease that results from factors beyond one's control and therefore one cannot be causally or morally responsible for alcoholism or the liver failure that results from it. Moreover, giving lower priority to alcoholics unfairly singles them out for the moral vice of heavy drinking. I argue that the (...) etiology of alcoholism may involve enough control for the alcoholic to be responsible for his condition and accordingly have a weaker claim to receive a new liver than someone who acquires the disease through no fault of his own. In addition, I show why it is more plausible to reframe the question of priority in terms of control and responsibility rather than virtue and vice. Given that medical resources like livers are scarce, some people may justifiably be given lower priority than others in receiving these resources. (shrink)

Scarce public resources require trade-offs between competing programs indifferent sectors, and the careful allocation of fixed resources within a single sector. This paper argues that a general quality of life instrument encompassing health-related and non-health-related components is suitable for determining the best trade-offs between sectors. Further, this paper suggests that subjective well-being shows the properties crucial to a general quality of life measure and has additional advantages that makes it particularly useful for the allocation of public and health care resources. (...) The paper argues that Western societies are in an unusually prosperous situation today which allows to concentrate efforts not only on reducing harm but also on improving positive states of health. Further, subjective well-being can be evaluated from the patient's perspective and incorporates a valuation of life expectancy. Criteria required for an appropriate questionnaire that measures subjective well-being are presented. (shrink)

After a review of terminology, I identify—in addition to Margaret Battin’s list of five primary arguments for and against aid-in-dying—the argument from functional equivalence as another primary argument. I introduce a novel way to approach this argument based on Bernard Lonergan’s generalized empirical method. Then I proceed on the basis of GEM to distinguish palliative sedation, palliative sedation to unconsciousness when prognosis is less than two weeks, and foregoing life-sustaining treatment from aid-in-dying. I conclude that aid-in-dying must be justified on (...) its own merits and not on the basis of these well-established palliative care practices; and that societies must decide, in weighing the merits of aid-in-dying, whether or not to make the judgment that no life is better than life-like-this part of their operative value structure. (shrink)

The purpose of this article is to present a normative theory of the goals of medicine (a theory that tells us in what respects medicine should benefit the patient) that is both comprehensive and unified. A review of the relevant literature suggests that there are at least seven plausible goals that are irreducible to each other, namely to promote functioning, to maintain or restore normal structure and function, to promote quality of life, to save and prolong life, to help the (...) patient to cope well with her condition, to improve the external conditions under which people live, and to promote the growth and development of children. However, it seems that all these goals need to be qualified in different ways, e.g. it does not seem reasonable to improve physiological function or functional ability unless this is expected to have positive effects on quality of life and/or length of life, or to improve the quality of life in any respect, or by any means. These qualifications all suggest that the proposed goals are, as goals, conceptually, and not just causally, related to one another, and that they should therefore not be regarded in isolation. Instead, we should think of the medical enterprise as having a multidimensional goal structure rather than a single goal. In order to depict clearly how the different goals are related to one another, a multidimensional model is constructed. (shrink)

Ultimately this book provides a theory of intergenerational justice that is both intellectually robust and practical with wide applicability to law and policy.

This thesis is a contribution to the ethical justification for clinical research with children. A research subject’s participation in a trial is usually justified, in part, by informed consent. Informed consent helps to uphold the moral principle of respect for persons. But children’s limited ability to make informed choices gives rise to a problem. It is unclear what, if anything, justifies their participation in research. Some research ethicists propose to resolve this problem by appealing to social utility, proxy consent, arguments (...) explaining why it is permissible to expose children to some harm, and an argument concerning the appropriate balance between research harms and benefits. I argue that each of these is a necessary part of the justification for research with children, but that the argument concerning harms and benefits is under-developed. It relies on the concept of minimal risk, but minimal risk is inadequately justified. I propose an interpretation of minimal risk. I defend the idea that minimal risk should be interpreted according to the risks of daily life. I reject the most prominent defense of daily life, which claims that daily risks are morally relevant because they replace, rather than add to, the risks a child would ordinarily face. Instead, I propose that these risks are part of a reasonable trade-off between personal safety and our ability to pursue meaningful lives. I then examine whose daily life should be captured in the concept of minimal risk. I reject arguments that minimal risk should refer to healthy children or the subjects of the research and propose instead that the referent should be children who are not unduly burdened by their lives. I argue that children are not unduly burdened when they fare well and defend the idea that children fare well when they possess sufficiently high degrees of the substantive goods of childhood. I conclude by analyzing a controversial case study using my interpretation of minimal risk. I draw on this case to argue that my interpretation offers clear guidance for research ethics review and contributes to a determination that is more plausible than its rivals. (shrink)