Antimicrobial resistance has been termed a ‘silent pandemic’, a ‘hidden killer.’ This language might indicate a threat of significant future harm to humans, animals, and the environment from resistant microbes. If that harm is uncertain but serious, the precautionary principle might apply to the issue, and might require taking ‘precautionary measures’ to avert the threat of antimicrobial resistance, including stewardship interventions like antibiotic prescription caps, bans on certain uses in farming sectors, and eliminating over-the-counter uses of antibiotics. The precautionary principle (...) is a useful tool in ethical analyses of antimicrobial stewardship measures, but as I argue in this article, it ought not be used as a standalone tool. The principle considers the magnitude of harms to be averted and those arising from precautionary measures, but—importantly—it does not consider the distribution of those harms. That may raise issues of social justice if the harms of stewardship measures befall already disadvantaged populations. To avoid this blind spot in ethical analysis using the precautionary principle, it ought never be used alone, but rather always alongside justice-considering ethical concepts such as reciprocity, benefit-sharing, or a just transition. (shrink)

Global justice is, at its core, about moral obligations to distant others. But which obligations ought to be included is a matter of considerable debate. In the discussion that follows I will explicate and challenge two objections to the inclusion of foundationally positive obligations in our account of global justice. The first objection is based on the proposition that negative obligations possess and positive obligations lack a property necessary for a moral demand to be a matter justice. The second objection (...) is that even the most trivial positive obligation becomes overly burdensome when applied to the global arena. And, though I do not offer any particular substantive account of positive obligations to distant others; I assess some of the implications that would arise were positive obligations to distant others to be included in our account of global justice. (shrink)

Three models for thinking about our responsibilities with respect to climate change are compared and evaluated. One is concerned with maximizing the present discounted value of consumption; the second views climate change through the lens of the tragedy of the commons. Both of these approaches are found to rest on implausible assumptions. A third model, based on the conception of a fiduciary trust is found to be more credible, and not to require overly burdensome policies.

This thesis is about demandingness objections. It is claimed that various moral theories ask too much of moral agents, and for that reason should be rejected or modified accordingly. In the first chapter, I consider what this objection entails, particularly distinguishing it from Bernard Williams's integrity objection. The second chapter investigates several attempts to undermine the objection. I contend that their arguments for a more burdensome conception of morality fail, and that accepting their `extreme' view would leave us unable (...) to explain much of our moral phenomenology. In the third chapter, I analyse what features of a moral theory make it susceptible to demandingness objections. Through this discussion I highlight social factors and psychological factors as potential candidates for generating the problem. Making use of these potential diagnoses, in chapter four, I examine the responses to demandingness objections by Richard Miller and Liam Murphy, which can provide verdicts sensitive to these features. In the fifth chapter, I examine the concept of blame and its relationship to moral wrongness. Noting this relationship and how an action's difficulty can affect whether we deem conduct blameworthy, I consider a recent proposal by Brian McElwee, that the difficulty of certain actions explains why they are too demanding. I reject this proposal, instead regarding difficulty as providing excuse conditions. However, through the discussion I draw attention to the fact that sub-optimal behaviour often does not need an excuse, suggesting that there is no `default' obligation to do the best. In the final chapter, I offer a way to consider how obligations are generated, utilising the concept of reasonableness. By incorporating this concept, and giving it a relativistic analysis, I suggest a theory can avoid demandingness objections. (shrink)

In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have an ambivalent but ultimately (...) productive relationship with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves—and others—in ways that often resist the propensity for domination through public health research.‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26). (shrink)

An “optional war” is a war that a state is permitted but not required to wage. Are there any such wars? This article assesses the two most promising arguments for optional war. (1) Permissible humanitarian wars can be so costly for soldiers and taxpayers that states are not be required them. (2) Wars of national self-defense can be discretionary: states can sometimes choose whether or not to defend themselves. The article refutes both arguments. Pace (1), states should not wage wars (...) when the costs of doing so are overly burdensome. Pace (2), states are required to resist aggression whenever they are morally permitted to do so. (shrink)

The Liverpool Care Pathway is intended as a palliative care regime at the end of life. Even its critics agree that certain of its recommendations may be useful and appropriate. Additionally, critics are aware that there are occasions when death may be a foreseen side effect of perfectly licit palliation whose primary ends are not homicidal at all. It is evident that treatment may be over-expensive, over-burdensome or simply futile. There is no suggestion that critics of the Pathway adhere (...) irrationally to what is known in medical ethics as the error of vitalism, the commitment to excessive, extraordinary or futile treatment, or over-burdensome care at the end of life. However, to ask whether treatment is futile, over-burdensome or over-expensive is very different to the discriminatory question about the futility, burden or expense of a frail and vulnerable patient. The sedation-dehydration aspect of the Pathway attracts much proper opposition. Doctors and families have found that those on the Pathway recovered when they intervened to take the patient off it. Senior medics have stepped forward, in the face of managerial opposition to argue that it is often impossible to know with certainty whether a person is imminently dying. One problem with the Pathway is that where a patient is misdiagnosed as terminal, the combination of morphine and dehydration has a self-fulfilling character and is likely to undermine a patient’s capacity. Persistent dehydration of even fit and healthy sedated patients will kill them. This was the difficulty highlighted by concerned medical professionals many years ago. The independent inquiry ordered in response to Freedom of Information Act requests performed in 2012 demonstrating a staggering increase in the number of people dying on the Pathway once it was financially incentivised needs to ensure certain investigations take place. What is needed, however, is not a whitewash but an independent inquiry with all interests declared and data sets interrogated and collated. These will cover a time-series medical history of each anonymised patient on the Pathway, duration until death, information about interventions provided during the period, monthly raw data from each trust, hospice or care home, medical histories, removals from the Pathway, information about journals that were corrected once a patient recovered, demographic data, location information and an audit trail of all data management. (shrink)

With the increasing prevalence of artificial intelligence (AI) and other digital technologies in healthcare, the ethical debate surrounding their adoption is becoming more prominent. Here I consider the issue of gaining informed patient consent to AI-enhanced care from the vantage point of the United Kingdom’s National Health Service setting. I build my discussion around two claims from the World Health Organization: that healthcare services should not be denied to individuals who refuse AI-enhanced care and that there is no precedence to (...) seeking patient consent to AI-enhanced care. I discus U.K. law relating to patient consent and the General Data Protection Regulation to show that current standards relating to patient consent are adequate for AI-enhanced care. I then suggest that in the future it may not be possible to guarantee patient access to non-AI-enhanced healthcare, in a similar way to how we do not offer patients manual alternatives to automated healthcare processes. Throughout my discussion I focus on the issues of patient choice and veracity in the patient–clinician relationship. Finally, I suggest that the best way to protect patients from potential harms associated with the introduction of AI to patient care is not via an overly burdensome patient consent process but via evaluation and regulation of AI technologies. (shrink)

As consumer lifestyles have changed over recent decades, people have increasingly turned to meals prepared away from home. A major consequence of this shift in eating patterns has been a concomitant rise in obesity rates worldwide. Research has consistently documented that consumers tend to make less healthy choices when purchasing prepared meals away from home. In part, this can be attributed to inadequate information at the time of purchase; both nutrition experts and lay consumers tend, for example, to underestimate calories (...) in food purchased away from home and thus portion sizes tend to be larger. Thus, by requiring restaurants and other purveyors of prepared foods to provide the calorie content and other nutrition information at the point of purchase, consumers should be able to make more informed decisions and public health should be improved. The often maligned Affordable Care Act (i.e., “Obamacare”) addressed this issue in a mandate calling for compulsory nutrition labeling of prepared foods at the point of sale. In response to this effort, conservatives in Congress introduced the “Common Sense Nutrition Disclosure Act” (CSNDA) which, if enacted, would have effectively eviscerated the menu labeling provisions mandated by the Affordable Care Act. The stated rationale behind this legislation: to protect small business and prevent job loss resulting from overly‐burdensome federal regulations. This article provides a historical look at the evolution of federally mandated menu labeling in the United States with particular emphasis on opposition to its passage. The position is taken such that this legislation is beneficial, warranted, and long overdue, and its opposition, as reflected in the CSNDA, points to the need for new metrics when evaluating public policy. (shrink)

This Article examines ability taxation, which is a tax on a person’s earning ability or potential earnings, rather than earned income. Despite this regime’s longstanding favor as a theoretical ideal for fair and efficient taxation among public finance economists, certain political philosophers, and tax law scholars, insufficient effort has been made to provide an analysis of what ‘potential earnings’ means. This Article explores competing understandings of this notion, and situates them within a multipart taxonomy. In so doing, it unearths a (...) tension at the core of the ability tax program involving a fundamental misalignment between the metaphysics (or correct conceptual analysis) of potential earnings and the economics of its taxation. It concludes that once we correctly understand its requirements, we should reject ability taxation as the first-best normative ideal it has been held out to be on the grounds that it is overly burdensome and unfair to certain individuals. (shrink)

Ethicists and physicians all over the world have been working on triage protocols to plan for the possibility that the Covid‐19 pandemic will result in shortages of intensive care unit beds, ventilators, blood products, or medications. In reflecting on those protocols, many health care workers have noticed that, outside the pandemic shortage situation, we routinely supply patients in the ICU with invasive and painful care that will not help the patients survive even their hospitalization. This is the kind of pointless (...) care that even the most basic protocol would triage against. Perhaps this widespread reflection on triage standards will draw our attention to our ongoing custom of supplying burdensome and inefficacious care to those near the end of life—care that most health care providers would not want for themselves. This essay argues that reflecting on triage could help us improve end‐of‐life care. (shrink)

I respond to George Sher's A Wild West of the Mind. Sher argues that the mind is a “morality-free zone.” I respond that some thoughts are too risky to think. As a result, there are some moral limits on our mental lives. But these moral limits need not be overly burdensome. Many somewhat risky thoughts are nonetheless permissible.

Background: Conducting video-research in birth settings raises challenges for ethics review boards to view birthing women and research-midwives as capable, autonomous decision-makers. Aim: This study aimed to gain an understanding of how the ethical approval process was experienced and to chronicle the perceived risks and benefits. Research design: The Birth Unit Design project was a 2012 Australian ethnographic study that used video recording to investigate the physical design features in the hospital birthing space that might influence both verbal and non-verbal (...) communication and the experiences of childbearing women, midwives and supporters. Participants and research context: Six women, 11 midwives and 11 childbirth supporters were filmed during the women’s labours in hospital birth units and interviewed 6 weeks later. Ethical considerations: The study was approved by an Australian Health Research Ethics Committee after a protracted process of negotiation. Findings: The ethics committee was influenced by a traditional view of research as based on scientific experiments resulting in a poor understanding of video-ethnographic research, a paradigmatic view of the politics and practicalities of modern childbirth processes, a desire to protect institutions from litigation, and what we perceived as a paternalistic approach towards protecting participants, one that was at odds with our aim to facilitate situations in which women could make flexible, autonomous decisions about how they might engage with the research process. Discussion: The perceived need for protection was overly burdensome and against the wishes of the participants themselves; ultimately, this limited the capacity of the study to improve care for women and babies. Conclusion: Recommendations are offered for those involved in ethical approval processes for qualitative research in childbirth settings. The complexity of issues within childbirth settings, as in most modern healthcare settings, should be analysed using a variety of research approaches, beyond efficacy-style randomised controlled trials, to expand and improve practice-based results. (shrink)

While virtually everyone recognizes the moral permissibility of whistleblowing under certain circumstances, most theorists offer relatively conservative accounts of when it is allowed, and are reluctant to offer a full recommendation of the practice as an important tool towards addressing ethical failures in the workplace. We think that accounts such as these tend to overestimate the importance of professional or personal obligations, and underestimate the moral obligation to shine light on severe professional malfeasance. Of course, a whistleblower, even an anonymous (...) one, often faces serious threats of retaliation and harm to their professional livelihoods and well-being. To address these challenges we argue in favor of a practice that we will call Preemptive Anonymous Whistleblowing (PAW). Such whistleblowing is preemptive in that a whistleblower provides information about malfeasance to a party in a position to do something about it without first raising the worry to one’s immediate superiors. At first blush, such preemption may seem unsettling, and PAW admittedly raises a number of worrisome issues. We defend PAW, however, as part of a larger argument that whistleblowing is morally required more often than is commonly thought. The availability of PAW as an option provides a method for allaying the concern that whistleblowing can be overly burdensome due to the risks of job and career. Insofar as that concern can be allayed, it is feasible for there to be substantial moral requirements to engage in whistleblowing in cases where severe harms can be prevented. With high enough stakes, there is a moral requirement for whistleblowing. (shrink)

The relationship between the ethical standards for the governance of clinical trials and market forces can be complex and problematic. This article uses India as a case study to explore this nexus. From the mid-2000s, India became a popular destination for foreign-sponsored clinical trials. The Indian government had sought to both attract clinical trials and ensure these would be run in line with internationally accepted ethical norms. Reports of controversial medical research, however, triggered debate about the robustness and suitability of (...) India's regulatory system. In response to civil society pressure and interventions by the Supreme Court, the Indian government proposed additional measures aimed at strengthening protections for clinical trial participants. Whilst the reforms can be seen as a victory for human rights activists, they have also been criticised as being overly burdensome for sponsors. Indeed, their announcement prompted an exodus of clinical trials from India. Fearful of losing business to ‘rival’ countries, the Indian government is revisiting some of its proposals. The Indian example suggests that research ethics frameworks and national policies for economic development are increasingly intertwined. Host countries are in theory free to improve the lot of research participants, but doing so may make them appear less attractive to foreign sponsors, who can simply shift their activities to more industry-friendly jurisdictions. Although these economic pressures are unlikely to lead to a regulatory ‘race to the bottom’, they may limit host countries' ability to enact socially desirable reforms. (shrink)

Despite existing federal and state law and regulation, new human subjects research scandals involving “vulnerable” populations continue to surface. Although existing oversight mechanisms were enacted to ensure voluntary informed consent for participants and institutional review board oversight of HSR, these laws and regulations do not provide any special oversight mechanisms or protections to ensure the ethical and safe inclusion of cognitively impaired adults. The absence of rules to ensure consistently ethical conduct of research involving adults who lack consent capacity may (...) either lead to exploitation of this vulnerable population or the dearth of important research into the broad range of diseases that impair cognition. In other words, while some institutions and investigators are conducting research with this group without guidance, others are taking an extremely conservative approach and are excluding these individuals from research. Without safeguards that are adequate and robust but not overly burdensome, conducting research involving this population is ethically and legally challenging. (shrink)

The Hellenic medical ideas have found appreciation among people over centuries. Though the initial concept remained the same, methods or ways to achieve desired aims have changed. Since Hippocrates, new generations of physicians have worked hard to find more powerful types of therapies to relieve their patients and make treatment less burdensome. The struggle of medicine is very specific and requires, apart from practical skills, a clear personal commitment to help people wisely. From the Early Antiquity, both medicine and (...) medical ethics go together. Wherever Hippocratic medicine is practiced, an appropriate moral pattern accompanies it because the Hellenic doctor offered purely clinical data and his art should not be separated from anthropology, ethics and religion. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Refusals of Treatment and Requests for DeathTom L. Beauchamp (bio)It would be hard to overestimate the importance of two decisions on physician-assisted suicide delivered recently by the Ninth and Second Circuit Courts (Compassion in Dying v. State of Washington, 79 F.3d 790 (9th Cir. 1996) (en banc), aff’g 850 F.Supp. 1454 (W.D. Wash. 1994), rev’g 49 F.3d 586 (9th Cir. 1995); Quill v. Vacco, 80 F.3d 716 (2nd Cir. (...) 1996). They are the highest courts yet to render an opinion on this subject, and their decisions have set the stage for the U.S. Supreme Court to take one of two paths: It will either say that (1) all citizens have a liberty interest in physician-assisted suicide, or that (2) each state may set its own policy on such matters. Whichever path is elected, a right to request physician-assisted suicide is a virtual certainty, at least in some states.These opinions are later segments of an evolving legal history in which courts have held that no criminal liability exists for withholding or withdrawing a life-sustaining treatment when physicians are directed to do so by a patient or an authorized surrogate (see Alan Meisel 1992). The decriminalization of suicide and the right to refuse a life-sustaining treatment now appear to be evolving into a rule that a patient has a legal right to control his or her death, or at least to obtain a lethal prescription. We are at a delicate point in this evolving history. Neither in law nor in bioethics is the justification of physician assistance in suicide the received opinion at the present time, but support for physician assistance in dying could soon become the received opinion in both disciplines.The leading edge of the wedge producing these changes has been widespread acceptance of an extensive right to refuse treatment. This right is today axiomatic in even conservative quarters of bioethics, but 20 years ago it was far from axiomatic that all patients have a right to refuse treatment. Few at that time judged that it would be both immoral and illegal for a physician not to forgo treatment in the face of a competent, authoritative refusal of any form of medical service or treatment.The justification for assistance in bringing about death in medicine is an extension of the justification for letting patients die. Letting a patient die by accepting a valid refusal to continue in life is directly analogous to helping a patient die by accepting a valid request for help. The high value we place on [End Page 371] rights of autonomy thereby spills over from the right to refuse to the underexplored right to request active assistance. 1 As the autonomy interest in this choice increases, denial of help to the patient becomes more burdensome.Those who defend the view that euthanasia and physician-assisted suicide are morally prohibited typically assume that assistance involves an act of killing, that acts of killing are impermissible, and that a defensible distinction exists between killing and letting die. However, this distinction has proved difficult to explicate, and the category of killing often seems distant from the problem at hand. For example, it is an eccentric view that a physician who prescribes a lethal medication to a patient thereby kills the patient (or, for that matter, lets the patient die) when the patient voluntarily ingests the medication and dies. So poor are the conceptual understandings of “killing” and “letting die” that conceptual confusion abounds as to which term to use in almost all morally difficult and controversial cases.A common view is that “letting die” is a matter of “ceasing useless treatments” after which patients die (Gaylin, Kass, Pellegrino, and Siegler 1988). This account is attractive, but too narrow. “Letting die” occurs in medicine under at least two circumstances: cessation of treatment because it is useless and cessation of treatment because it has been refused (which can occur even with useful treatments). Neither conceptually nor morally is “ceasing useless treatment” the proper way to state the condition under which many “letting-die” cases occur. It follows that the type of action—killing or letting... (shrink)

Memory, mother of the Muses by Zeus, has nurtured culture for nearly three millennia while her nemesis, forgetfulness, has been demonized as an agent of destruction. In the modern age, however, memory has grown increasingly burdensome, opening the way for a more positive assessment of forgetfulness. Nietzsche praises animals for an inability to remember that preserves their innocence and happiness, and Freud documents the discontents of a civilization that cannot forget. ;In tracing the recent development of these issues, the (...) dissertation focuses primarily on Walter Benjamin, Hans Blumenberg, and Thomas Pynchon. Benjamin and his anguished "angel of history" show the destructive psychological effects of trying to use human memory as a secular form of redemption. Blumenberg's philosophy of history makes it possible to trace memory's responsibility for redemption to the modern age's inflated notion of the subject. Blumenberg's work also emphasizes the importance of metaphor and narrative in mediating and creating historical understanding, and this aesthetic distance weakens memory's redemptive relation to the past. Pynchon's protagonists, too, find that their desire to make historical meaning fully present is overshadowed by their fear of such presence. By reconciling themselves to a profane aesthetic distance from the past, Blumenberg and Pynchon redeem themselves from the melancholy engendered by an overly ambitious memory. ;Thus the dissertation attempts to recover a more modest and less oppressive memory by understanding it as a way to distance rather than redeem past injustices. This reconception of the function of memory helps establish an equilibrium between the pensive memory of Benjamin's "angel of history" and the innocent oblivion of Nietzsche's animals. ;In addition to the three major figures named in the title, the dissertation devotes sections and excursuses to Friedrich Nietzsche, Sigmund Freud, Ernst Cassirer, Martin Heidegger, Virginia Woolf, Ernst Robert Curtius, Elie Wiesel, Primo Levi, Michel Foucault, and Thomas Kuhn. Translations of two essays by Blumenberg, "Pensiveness" and "Being--A MacGuffin," and a comprehensive Blumenberg bibliography are included as appendices. (shrink)

Human needs play a crucial role in the moral evaluation of distributions of goods and services. This role is attested by the rhetorical effectiveness of appeals to needs. But what moral currency do these appeals to needs. But what moral currency do these appeals have? Which needs are morally most important? ;I argue that our morally most important needs are what we require or find indispensable in order to avoid harm as damage, or as the impairment of our fundamental capabilities. (...) To illustrate their moral importance, I show that these needs are more important than are competing wants or desires. To this end, I offer a novel defense of the intuitively plausible view that universal moral claims to assistance in meeting needs have a presumptive precedence over competing claims to assistance in satisfying wants or desires. These needs have a presumptive precedence over competing wants largely because one person's reasons to meet these needs are presumptively stronger than another person's reasons to satisfy competing wants. ;Instead of considering the full moral importance of what we need in order to avoid harm as damage--an evaluation that requires studying the role played by these needs in other fundamental distributive principles, such as property rights--I turn to consider two challenges to this principle of precedence to needs in assistance. Is this principle not too demanding in requiring that one help others meet their needs before allowing one to help others satisfy competing wants and desires? Is this principle not too demanding in requiring one to help others meet their needs beyond what it would be fair for one to do? ;Although the first challenge is intuitively appealing, I reject it because the suggestions made about where to draw the limits to moral requirements of assistance on grounds of costs or burdensomeness are unsatisfactory. In order to evaluate the second challenge, I propose that we understand fair shares of a collective obligation of assistance as equally burdensome shares. I then argue we have little reason to think we are morally required to do only what it is fair for us to do in this sense. (shrink)

Whatever may be said about contemporary feminists’ evaluation of Descartes’ role in the history of feminism, Mary Astell herself believed that Descartes’ philosophy held tremendous promise for women. His urging all people to eschew the tyranny of custom and authority in order to uncover the knowledge that could be found in each one of our unsexed souls potentially offered women a great deal of intellectual and personal freedom and power. Certainly Astell often read Descartes in this way, and Astell herself (...) has been interpreted as a feminist – indeed, as the first English feminist. But a close look at Astell’s and Descartes’ theories of reason, and the role of authority in knowledge formation as well as in their philosophies of education, show that there are subtle yet crucial divergences in their thought – divergences which force us to temper our evaluation of Astell as a feminist. -/- My first task is to evaluate Astell’s views on custom and authority in knowledge formation and education by comparing her ideas with those of Descartes. While it is true that Astell seems to share Descartes’ wariness of custom and authority, a careful reading of her work shows that the wariness extends only as far as the tyranny of custom over individual intellectual development. It does not extend to a wariness about social and institutional customs and authority (including, perhaps most crucially, the institution of marriage as we see in her Reflection on Marriage). The reason for this is that Astell’s driving goal is to help women to come to know God’s plan for women – both in their roles as human and in their roles as women. According to Astell, while it is true that, as individuals, women must develop their rational capacities to the fullest in order to honor God and his plan for women as human, as members of social institutions, including the institution of marriage, women must subordinate themselves to men, including their husbands, in this case so as to honor God and his plan for women as women. Once we understand the theological underpinnings of her equivocal reaction to authority and custom, we can see that Astell may be considered a feminist in a very tempered way. -/- My second task is to use these initial conclusions to re-read her proposal for single-sexed education that we find in A Serious Proposal to the Ladies. It is true that Astell encourages women to join single-sexed educational institutions for the unique and empowering friendships that women can develop in such institutions. Still, my argument continues, the development of such friendships is not entirely an end in itself. Rather, Astell encourages women to develop such friendships such that they can re-enter the broader world armed with the tools that will help them endure burdensome features of the lives that await them in the world, including their lives as subordinated wives –burdens that Astell does not, in principle, challenge. (shrink)

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief (...) in religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a ‘miracle’ would happen. (shrink)

As improvements in neuroscience have enabled a better understanding of disorders of consciousness as well as methods to treat them, a hurdle that has become all too prevalent is the denial of coverage for treatment and rehabilitation services. In 2011, a settlement emerged from a Vermont District Court case, Jimmo v. Sebelius, which was brought to stop the use of an “improvement standard” that required tangible progress over an identifiable period of time for Medicare coverage of services. While the use (...) of this standard can have deleterious effects on those with many chronic conditions, it is especially burdensome for those in the minimally conscious state, where improvements are unpredictable and often not manifested through repeatable overt behaviors. Though the focus of this paper is on the challenges of brain injury and the minimally conscious state, which an estimated 100,000 to 200,000 individuals suffer from in the United States, the post-Jimmo arguments presented can and should have a broad impact as envisioned by the plaintiffs who brought the case on behalf of multiple advocacy groups representing patients with a range of chronic care conditions. (shrink)

Life-support technology may become a death-prolonging horror, and some people may fear that an over-intellectualized interpretation of traditional moral teaching has led us astray from what a compassionate God wills for the dying. The author addresses this fear. Those who defend “orthodox” teaching on end-of-life issues have a serious obligation not to obscure the compassion implicit in the traditional distinction between ordinary and extraordinary means. There is no medical or moral obligation to prolong dying or make it more burdensome (...) with interventions that offer little benefit, and there is nothing immoral about pain relief. What is prohibited is killing: any action or omission that has the express or implicit purpose of ending a life. National Catholic Bioethics Quarterly 10.4 (Winter 2010): 695–705. (shrink)

We apply the analysis that we have developed over the course of several publications on the significance of ignorance for decision-making, especially in surrogate (and, thus, in political) contexts, to political decision-making, such as it has been, during the COVID-19 pandemic (see Scheall 2019; Crutchfield and Scheall 2019; Scheall and Crutchfield 2020; Scheall 2020). Policy responses to the coronavirus constitute a case study of the problem of policymaker ignorance. We argue that political responses to the virus cannot be explained by (...) assuming that the interests of policymakers were at loggerheads with those of their constituents at the beginning of the crisis. In order to explain the responses of policymakers, it is necessary to recognize the effects of relevant ignorance on their incentives to pursue different policy objectives. We discuss the knowledge that policymakers required at the start of the pandemic in order to deliberately realize the goal of limiting overall human suffering and the spontaneous forces that could have facilitated the realization of this goal. The problem of policymaker ignorance implies that policymakers have not earnestly pursued the goal of limiting overall suffering due to the novel coronavirus, but have repeatedly resorted to the pursuit of relatively less epistemically burdensome goals. The problem of policymaker ignorance explains why policymakers have focused primarily on limiting one kind of suffering – physical suffering due to the virus – and have mostly ignored related kinds of suffering, i.e., the economic, sociological, psychological, and physical suffering caused by policies to limit physical suffering from the virus. The problem of policymaker ignorance also helps to explain why policymakers relied on the relatively blunt instrument of economic lockdown rather than more focused protection policies, and why they continue to resort to lockdowns, despite the emerging scientific evidence of their ineffectiveness at mitigating physical suffering due to the virus. (shrink)

How should we respond to patients who do not wish to take on the responsibility and burdens of making decisions about their own care? In this paper, we argue that existing models of decision-making in modern healthcare are ill-equipped to cope with such patients and should be supplemented by an “appointed fiduciary” model where decision-making authority is formally transferred to a medical professional. Healthcare decisions are often complex and for patients can come at time of vulnerability. While this does not (...) undermine their capacity, it can be excessively burdensome. Most existing models of decision-making mandate that patients with capacity must retain ultimate responsibility for decisions. An appointed fiduciary model provides a formalized mechanism through which those few patients who wish to defer responsibility can hand over decision-making authority. By providing a formal structure for deferring to an appointed fiduciary, the confusions and risks of the informal transfers that can occur in practice are avoided. Finally, we note how appropriate governance and law can provide safeguards against risks to the welfare of patients and medical professionals. -/- . (shrink)

Background: The parent of a child with profound cognitive disability will have complex decisions to consider throughout the life of their child. An especially complex decision is whether to place a tracheotomy to support the child’s airway. The decision may involve the parent wanting a tracheotomy and the clinician advising against this intervention or the clinician recommending a tracheotomy while the parent is opposed to the intervention. This conflict over what is best for the child may lead to a bioethics (...) consult. Objective: The study explores the conflicts that may arise around tracheotomy placements. Research design: This study is a retrospective cohort study of pediatric patients for whom a tracheotomy decision required a bioethics consult. Participants and research context: Pediatric patients aged birth to 18 years old with a bioethics consult for a tracheotomy decision conflict between April 2010 and December 2016. A standardized data collection tool was used to review notes entered by the palliative care team, social workers, primary clinical team interim summaries, and the bioethics consult service. Ethical considerations: The study was reviewed and approved by the medical center’s institutional review board. Results: There were 248 clinical bioethics consults during the identified study period. There were 31 consults involving 21 children where the word tracheotomy was mentioned in the consult, and 13 of the 21 consults were for children with profound cognitive disability. Discussion and conclusion: Clinicians need to be aware of their own biases when discussing a child’s prognosis and treatment options while also understanding the parents’ values and what the parent might consider to be burdensome in the care of their child and the acceptable burden for the child to experience. (shrink)

There is uncertainty and disagreement about the question which preventive actions are rationally justified with regard to moderately elevated levels of nuclear radiation. This may have at least four causes: ignorance, insufficient information, inconclusiveness and indeterminability. After the nuclear disaster with the Fukushima nuclear power plant the advice, given by some authorities, to leave Tokyo was largely based on the former two factors: ignorance and insufficient information. By contrast, the uncertainty and disagreement amongst experts about the size of the area (...) to be evacuated was mainly caused by the latter two factors: inconclusiveness and indeterminability. Inconclusiveness concerns the question whether moderately elevated radiation levels cause real and significant health risks that require drastic measures. Indeterminability concerns the problem of rationally weighing disparate benefits and costs of the preventive measures, to wit, expected health benefits versus the costs and burdens of mass evacuation. The International Commission on Radiological Protection (ICRP) recommends that no measures should be taken unless they produce a positive net benefit. Exposure to moderately increased levels of radiation may increase the risk of fatal cancer in the future, while mass evacuation has burdensome and disruptive consequences for the society and for the persons who have to leave their residential and/or working area for a long time. Ordering of mass evacuation seems rationally and ethically justified only if the expected future benefits outweigh the present and future burdens. Small or uncertain future health benefit may be outweighed by large costs and burdens of mass evacuation. Because we have to take into consideration not only public but also individual costs and benefits, it is important to take into account the personal absolute increase in health risk of elevated radiation in addition to relative risk. Unlike relative risk, absolute risk reveals the individual chance of getting a radiation-based disease. The increase in absolute risk – that is, the difference between the chances of getting the disease with and without the exposure to the increased level of radiation – is a useful measure to reveal the personal chance of health benefit from evacuation. This personal benefit must be balanced against the personal costs and burdens. The key question is which levels of radiation absorption and health risks outweigh the burdens of mass evacuation. There seems consensus amongst experts about the justification of mass evacuation in cases of expected individual radiation absorption > 500 mSv over a year. Similarly, experts agree that expected extra radiation absorption < 10 mSv does not justify mass evacuation. But between these two extremes there is a wide range of 50-fold increasing radiation levels in which it is not clear whether the personal and public benefits from mass evacuation outweigh the personal and public costs. This may partly explain why experts and authorities gave conflicting advice about the radius of the area around the Fukushima nuclear power plant within which people had to be evacuated. The uncertainty about the right thing to do with respect to a wide range of moderately elevated levels of radiation seems to be caused not only by inconclusiveness but also by indeterminability, that is, impossibility of determinately weighing disparate costs and benefits. (shrink)

According to the Supreme Court of Canada, Aboriginal title is a property right, albeit of a distinctive kind. Most significantly, the right is subject to an inherent limit: title lands cannot be used in a way that deprives present and future generations of the right to use the land. Aboriginal title is also encumbered by a restraint on alienation, and has its source in Aboriginal legal systems that predate and survive the assertion of Crown sovereignty. In this paper, we argue (...) that these features of Aboriginal title are not burdensome judicial innovations on a property right, but are instead the essential contours of a sovereign right. That is, the Court’s own description of Aboriginal title does not comport with sound theoretical understandings of a property right. Aboriginal title is much more akin to a right of sovereignty—the right to make laws about the use of a territory. Aboriginal title is the right of law-making jurisdiction over the title lands. The existing literature, while edging towards the view that Aboriginal title is a sovereign right, has lacked the unifying theoretical basis needed to decisively dispatch the Court’s property paradigm. In particular, all extant accounts find the inherent limit inexplicable. The account in this article theorizes and explains the inherent limit, as well as all of the sui generis elements of Aboriginal title, and shows their interconnectedness. Our view additionally answers a number of questions that the Court’s property paradigm does not, including: (1) what laws primarily govern title lands; (2) who has standing to question whether any particular use of title land violates the inherent limit; (3) what is the status of private land interests that overlap with Aboriginal title lands; and (4) how should the doctrine of Aboriginal title be updated in light of jurisprudential developments emphasizing that Indigenous peoples never ceded their sovereignty? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:These Things I BelieveA. M. ShuhamI am a health care professional who has worked in the field for two decades. I have been part of small miracles and heartbreaking events, which kept me up at night. Although I do not [End Page 120] provide direct patient care, my advanced education and expertise allows me to advise members of the health care team when difficult questions arise about the goals (...) of treatment, questions about competency and interpreting patient preferences. I believe my interest in the field was shaped by my family’s experience dealing with the challenges that come with terminal illness and advancing age. I am humbled to have been part of their journey as they faced death with dignity and grace.Living in a small community presents significant challenges that may never occur in a large urban setting. The team you work with knows your family or the names of your children because in their spare time they are the piano teacher or soccer coach for your children, friends that knew you growing up. This close knit atmosphere can be a blessing when things go well and unbearable when mistakes are made or professionals disagree, because you still interact with one another outside the context of your professional role and this is when moral distress begins.I began working with A. J. ten years ago to facilitate the completion of a health care directive. At the time A. J was beginning to show the signs of a neuro–muscular disease experienced by other members of the family. In early 2000 most directives were fairly straightforward with the option to choose artificial nutrition and hydration or not. A. J. very specifically checked “none.” Years went by living independently for A. J. but as most illnesses progress so did A. J’s, and admission to a health care institution became necessary. In many situations medically assisted nutrition and hydration would be indicated, but in this case the wishes of the patient were known in the form of a health care directive. The decision makers inability to honor the directive was the purpose for my involvement almost a decade after my initial work with A. J.No matter where you stand in the debate regarding medically assisted nutrition and hydration being burdensome or ordinary care, most people believe in the importance of a health care directive given the histories of Nancy Cruzan, Karen Quinlan and Terri Schiavo. My objective was to compile the legal information that would elucidate the patient preferences and help staff and the decision maker understand it was time to honor the directive given the advanced stage of disease. Numerous attempts were made with the surrogate and health care professionals to help them understand state statutes on health care directives supporting a patient’s right to chose. It became clear that some of the team seemed disinterested in my concerns or my responsibility as a professional, and I began to believe the difficulty was a failure on my part to communicate clearly.During that first year conversations and meetings were scheduled with the patients decision makers and they felt unable to make a decision and requested the entire family provide input. Although they understood A. J’s wishes, they felt everyone should be in agreement. In my experience when leaving decisions of this magnitude to a large extended family, communications deteriorate and little can be accomplished. Some members in the family held fundamental religious beliefs and thought a miracle could change the prognosis. While I believe as health care professionals we must respect individual religious beliefs and values, we are also morally obligated to advocate on behalf of our patients a fundamental principle I hold dear.The health care team was no more eager to address the issue than the family. I had produced specific state statutes regarding the health care directive of a previously competent person and even in light of this information, some individuals continued to believe the surrogates decision took precedence over the directive. This growing tension left me feeling angry and ineffective, questioning my role in the organization, while watching A. J. linger in a state not chosen. I believed I had failed... (shrink)

Photo by Tingey Injury Law Firm on Unsplash ABSTRACT The coverage of healthcare costs allegedly brought about by people’s own earlier health-adverse behaviors is certainly a matter of justice. However, this raises the following questions: justice for whom? Is it right to take people’s past behaviors into account in determining their access to healthcare? If so, how do we go about taking those behaviors into account? These bioethical questions become even more complex when we consider them in the context of (...) a commitment to publicly funded, universal healthcare coverage. INTRODUCTION Healthcare coverage of lifestyle-related conditions is certainly a matter of justice. However, this raises the following justice-related question: Is it right to consider people’s past behaviors in determining their access to healthcare? If so, the methods of taking those behaviors into account must be fair and justifiable. This bioethical question becomes even more complex when we consider it in the context of a commitment to publicly funded, universal healthcare coverage. This paper takes an old, classic debate, evaluates newer approaches, and offers an argument favoring a combined approach which alters the liberal-egalitarian solution to account for social justice. ANALYSIS l. Causes of Disease If healthcare coverage were universal, irrespective of socioeconomic status and lifestyle, people would contribute to the cost of remedying the lifestyle-induced health problems of others. In the West, lifestyle-related diseases are burdensome.[1] This paper approaches this concern from a western lens that incorporates both a European tradition of “social safety nets” and an American tradition of personal freedoms. By taking such an approach, solutions to the consequences of one’s past behavior burdening others must consider an individual’s personal freedom to choose to act as he or she wishes, with the distributive social and economic equality of the many. The concept of disease caused by lifestyle and diet is proven. Many health conditions include behavioral risk factors. Multi-pack smoking increases the risk of chronic lung disease, while obesity increases the risk of type 2 diabetes. Inattention to high blood pressure, high cholesterol, and a lack of exercise leads to increased risks of coronary artery disease.[2] While poor lifestyle choices certainly influence these conditions, their causes are multifactorial, and it is difficult to say that any single string of poor choices led to their development. In a scenario where two men excessively eat fast food for 20 years, several discrete factors impact whether any of them might suffer an ischemic-embolic stroke or not. Genetics, circumstances, and activity will also contribute to outcomes. ll. Alcohol-Related End-Stage Liver Disease One paper suggests that alcohol-related end-stage liver disease (ARESLD) differs from other multifactorial disorders as alcohol alone causes the disease.[3] It justifies attributing personal responsibility to patients with ARESLD because the condition develops only after the cumulative effects of large quantities of alcohol consumed from years to decades.[4] However, the paper undermines its position by admitting that even the susceptibility to becoming an alcoholic has some degree of genetic predisposition.[5] Given the extreme scarcity of donor livers, some patients may be prioritized over others on the transplant waiting list. Since donor livers cannot be given to everyone, transplanting a liver into an alcoholic may result in death for competing candidates whose liver disease was not their fault. All else being equal, if bioethicists avoid claiming moral deficiency or judgment, those with apparently self-inflicted ARESLD will not be deprived of treatment but will have a lower priority for transplant.[6] In contrast, another position suggests that it is often difficult to define what behaviors are punishable as these are largely personal and value-laden.[7] Still, people do not support using their own resources to support the consequences of others’ poor choices, no matter how objective.[8] In democratic societies, one must take into consideration community morals and values.[9] Even if we were to punish people for their health-adverse behaviors, we could not logistically employ the vigorous and sustained efforts necessary to determine whose actions are morally weak.[10] lll. The Liberal-Egalitarian Proposal One past argument proposes a liberal-egalitarian solution to manage personal responsibility for so-called “lifestyle diseases.”[11] This Rawlsian system combines the European-style “social safety net” commitment to social and economic equality with the American liberal notion of pluralist toleration and personal freedoms. This idealized system aims to hold people responsible for their choices rather than the consequences to mitigate the downside of blaming those who might not be blameworthy. The approach avoids determining the questionable nature of luck and personal responsibility for health outcomes, fairness in the distribution of economic burden, and the intrusiveness required to practically determine who acts in a morally wrong and health-adverse way. The liberal-egalitarian model, a theory of distributive justice, has two facets: the liberal principle that people should be held accountable for their choices and the egalitarian principle that people who make the same choices should have the same outcomes.[12] This model attempts to fuse responsibility with equity by seeking to reward good behavior and tax bad behavior rather than punish the consequences of the action and navigate who deserves treatment. For instance, the hospital bedside is not the appropriate place to introduce responsibility for one’s health outcomes.[13] This appeals to the reality that, at that time, discerning the true causes of disease was not plausible and to humanity in avoiding a heartless and cruel approach. An argument in favor of the liberal-egalitarian model considers its method of implementation. This approach assumes that the healthcare system treats all individuals regardless of their choices or ability to cover costs. The liberal-egalitarian model also assumes that a certain adverse health condition is related, statistically speaking, to the consumption of a certain good and that good can be taxed. As such, it proposes to tax the consumption of that good to finance the collective burden which arises from that good’s consumption rather than require individuals to pay for their own treatment. In the example of ARESLD, the recommended solution would be taxing all alcohol. While a systematic infrastructure is not explicit, there is the implication that a per-unit tax can be imposed on alcohol so the total tax revenue would make up for the additional healthcare costs due to consumption.[14] Upholding the principle that all people who make the same choices should face the same costs, all consumers of alcohol would pay the same tax, regardless of factors such as genetic predisposition to alcoholism, lifestyle, or expected cost of treatment. Upholding the principle of individual responsibility, this model does not deny treatment to anyone, neutralizing factors outside that individual’s control by imposing the tax ex-ante. Other people are not burdened by those who consume the good. People who consume alcohol face a burden proportional to the amount consumed. This tax-based implementation is justified so long as the tax is not prohibitively high for the average consumer. Further, the model mitigates concerns over the intrusiveness of ascribing morality to health-adverse behaviors. lV. Moral and Social Arguments Against the Liberal-Egalitarian Position Arguments against the liberal-egalitarian model concerns its many assumptions. First, this model assumes that consumption of such goods is directly related to the health outcome and that these goods can be taxed.[15] Certain people genetically predisposed to alcoholism would be predisposed to consume more alcohol. The model falls short when applied to scenarios where health outcomes are not consumption-based, such as engaging in unsafe sex or abstaining from healthy lifestyle choices like exercise. Second, some might argue that the liberal-egalitarian model fails to remain neutral. Residual moral judgments tied to consumption choices introduce non-neutrality. Although taxation in free societies is determined by democratic procedures rather than by individuals in the healthcare system, moral and value-based judgments will be implicit in deciding what behaviors are taxable, such as the purchase of cigarettes. Third, the liberal-egalitarian model fails to determine whether one’s behavior is autonomous, as socio-cultural-economic factors may influence it and behavior is more a product of society, peer pressure, or income. Those also may reflect systemic inequalities. Therefore, this model, which rewards, or taxes based solely on decisions, regardless of their consequences and motivations, fails to consider that a person’s decisions may not be completely autonomous. V. Libertarian Arguments Against the Liberal-Egalitarian Model a. State Intrusiveness as Counter to the Liberal-Egalitarian Model Last, there is a libertarian worry that if the state guarantees universal healthcare coverage to all people, the state will have to become highly intrusive and investigate people’s morals.[16] At least one-third of all disease burden in North America, Europe, and the Asia-Pacific is attributable to lifestyle measures such as tobacco smoking, alcohol consumption, high cholesterol, and obesity.[17] With these various lifestyles, it is not likely to agree on what conduct to tax or condemn.[18] The fine-toothed comb required to determine whether each citizen has been engaging in these behaviors would intrude on daily life and personal freedom. Libertarians champion the argument that impractical intrusiveness would result from universal healthcare, and such a degree of intrusiveness would likely be universally unacceptable.[19] The liberal-egalitarian model mitigates the libertarian worry about state intrusiveness as it does not involve prying into one’s life and choices other than taxing goods. A liberal state should ideally be neutral to how people decide to live their lives. In all, libertarians can rest assured that the liberal-egalitarian tax-based model, through its ex-ante implementation, will require no prying state eyes. States that provide universal healthcare coverage and wish to condemn certain misconduct do not need to become overly intrusive to carry out measures to hold individuals accountable. b. Fairness Another libertarian worry regarding the guarantee of universal healthcare coverage in the context of lifestyle-driven diseases is that the public will be burdened unfairly with covering others’ ill-advised mistakes or bad luck. An ideal system to address this worry would link treatment or payment for treatment with whatever behavior caused that need.[20] The distribution of burdens should be linked to how different individuals contributed to the creation of those burdens. Applied to health policy, we should ask how the need for a certain treatment arose when determining how to distribute its cost.[21] The liberal-egalitarian model aspires to hold individuals responsible for their choices, not for the consequences of such choices. This model significantly mitigates the libertarian worry over unfair burdens for covering other people’s mistakes or social conditions, which lead to those bad outcomes, by ensuring to not burden others with any of the costs for the treatment of people who decide to engage in certain health-adverse behaviors. The aforementioned taxation-based system would only tax those who also engage in the health-adverse behavior through consumption, and that tax directly pays for the necessary collective treatment. As such, those who do not consume the good are not involved with the payment scheme, while those who do consume the good are responsible for payment in a matter proportional to the amount of the good they have consumed. Vl. Universal Coverage Taking a step back, one should consider whether these worries regarding the coverage of apparently self-inflicted health conditions in the context of universal healthcare are worthwhile issues. One perspective raises what is called the culturally imagined objection — an idea erroneously held by many that sick people, especially those who are poor and uneducated, bring these illnesses upon themselves due to poor decision-making and irresponsible risk-taking.[22] This perspective critiques the uniquely American view that, since individuals are free to choose their lifestyles, they should bear the costs of their lifestyle.[23] Taking this argument further, some (perhaps the strongly libertarian) would say that the poor health status among many individuals is the price individuals must pay for their American way of life and the liberty and freedom to live as they wish. However, people should not completely punish individuals for their health-adverse behaviors because these choices are largely pre-determined by a person’s socioeconomic influences.[24] The outcomes from these allegedly ill-advised behaviors, which largely affect poorer people, are not just poor behavior but rather a public health crisis. Perhaps the state and its people should take collective responsibility and cover the costs of treatment for those health outcomes without question, as a form of public service. Rather than worrying about accountability and taxing bad behavior or intrusiveness into personal decisions, some might argue that people need to collectively take responsibility for reducing the overarching systemic inequalities and covering the associated treatment costs as a measure of public health. Vll. Proposed Solution Given the strengths of the liberal-egalitarian model and taking into account libertarian and social justice-oriented objections, an ideal solution for the coverage of lifestyle-related health problems needs to consider the complex relationship between a person’s behaviors and their apparent health outcomes. It must consider how society as a whole passes judgment on behaviors and how to take into account that many health-adverse decisions are not truly autonomous decisions, as various genetic and socioeconomic factors influence them. An ideal solution combines the liberal-egalitarian tax-based model with the social justice concerns of universal coverage. Whatever the cost for the treatment of medical issues resulting in part or entirely from lifestyle and diet, taxes collected from spending associated with the behavior (like the purchase of alcohol, junk food, and cigarettes) ex-ante should fund 50 percent of the cost of treatment, while the universal healthcare taxation scheme should include the other 50 percent. Such a system would provide an incentive to avoid the purchases that can lead to unhealthy consumption and make healthier choices, slightly punish and discourage such purchases through taxation, yet not overly punish people whose outcomes may have more to do with socioeconomic factors and genetics. Adding public responsibility demonstrates acknowledgement that health care is in the public interest and can mitigate public health inequalities. This solution would fuse personal responsibility with the public responsibility of state-sponsored social improvement while ensuring that all people have fair access to necessary treatment, no matter their ability to pay. CONCLUSION The 50-50 system this paper proposes reflects both justice and personal responsibility in covering healthcare costs allegedly brought about by people’s own health-adverse behaviors. By allocating tax revenue from consumption that contributes or even alone causes poor health outcomes, such a system incorporates personal responsibility. By using general tax revenue for health care, such a system would meet the libertarian requirement of providing care without any moral investigation of past behaviors and the social justice consideration of providing health care to those who may have unwittingly ventured into ill-health due to systemic injustice, socioeconomics, or genetics. - [1] Cappelen, A. W. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480. https://doi.org/10.1136/jme.2004.010421 [2] Moss, A. H. (1991). Should alcoholics compete equally for liver transplantation? JAMA: The Journal of the American Medical Association, 265(10), 1295–1298. https://doi.org/10.1001/jama.1991.03460100097032 [3] Moss, p. 1295-1298. [4] Moss, p. 1296. [5] Moss, p. 1295-1298. [6] Moss, p. 1295-1298. [7] Cohen, C. IS THIS SUPPOSED TO BE COHEN AND BENJAMIN (1991). Alcoholics and liver transplantation. JAMA: The Journal of the American Medical Association, 265(10), 1299–1301. https://doi.org/10.1001/jama.1991.03460100101033 [8] Cohen, p. 1299-1301. [9] Moss, p. 1297. [10] Cohen, p. 1300. [11] Cappelen, p. 478-480. [12] Cappalen, p. 478-480. [13] Cappelen, p.479. [14] Cappelen, p. 479. [15] Cappelen, p. 479 [16] Cohen, p. 1301. [17] Cappelen, p. 478. [18] Cohen, p. 1299-1301. [19] Cohen, p. 1301. [20] Cappelen, p. 476-480. [21] Cappelen, p. 476-480. [22] Kawachi, I. (2005). Why the United States is not number one in Health. Healthy, Wealthy, and Fair, 18–33. https://doi.org/10.1093/acprof:oso/9780195170665.003.0013 [23] Kawachi, p. 18-33. [24] Kawachi, p. 18-33. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsF. Daniel Davis (bio) and Diane M. Gianelli (bio)As most readers of this column already know, the President's Council on Bioethics went through a major transition during the past year when Leon Kass—in October 2005—handed the chairman's gavel over to Georgetown University's Edmund Pellegrino. Dr. Kass has remained on the Council as a member.1When the gavel change took place, the Council's phone started (...) ringing. Everyone wanted to know the same thing: What topics would the Council take up this term? Dr. Pellegrino's answer was always the same: The Council's agenda would be established through a consultative process with the members themselves and with an eye to those problems and controversies in bioethics to which we, as a body, can make a contribution.Taking its cue from the list of potential topics suggested by members, the Council—over the course of the next several meetings—listened to experts on such topics as children and bioethics (with a focus on children in clinical research), organ transplantation, and that oft-cited-but-hard-to-define concept, "human dignity."The latter topic entered the arena of discussion because it is a concept that is cited frequently in the bioethics literature, and it is also one that has figured prominently in Council discussions and documents. Although the concept is widely invoked, there is no universal understanding of what it means, and it is not easy to encapsulate into a one-size-fits-all definition. Indeed, some critics maintain that appeals to human dignity are fig leaves used to camouflage unconvincing arguments. So between December 2005 and April 2006, the Council devoted several sessions to various perspectives on "human dignity: its meaning, its foundations, and its relevance to bioethics." After hearing from James Childress, Patricia Churchland, Daniel Sulmasy, and Paul Weithman2 on the topic, the Council decided to issue a volume of approximately 20 essays, some by Council members and others by scholars from a variety of relevant disciplines.3 The volume is expected to encompass a broad array of opinion on the topic of human dignity and is scheduled to be published next spring."Children" were also the focus of several sessions during the past year. The Council's last report addressed care giving for the elderly.4 After it was issued, several members suggested it was time to focus on the youngest members of [End Page 375] society. The challenge, of course, was to find a topic that was both timely and relevant—and one about which the Council was uniquely qualified to make a contribution. A number of experts in a variety of related fields testified before the Council about possible issues it could explore: newborn screening for genetic disorders; decision-making standards for those who lack capacity; ethical issues in neonatal and pediatric intensive care; pharmacology and psychiatric disorders in children; and children and clinical research. In addition, a number of groups and individuals involved in related topics met with staff to discuss their interests and concerns.This exploratory engagement with facets of the broad topic of children and bioethics led the Council to focus, more narrowly, on a cluster of issues concerning newborn screening for genetic disorders—a topic on which it is likely that the Council will issue a white paper, possibly by next summer. The stimulus for this particular focus has been the American College of Medical Genetics's recommendation that all newborns in the U.S. be screened for a panel of 29 disorders.5 Currently, each state decides for its residents which conditions are subject to mandated screening, so it is possible to get early diagnoses of treatable disorders in one geographical area but not in another. Proponents of screening find the federal approach to mandated screening more equitable. Potential ethical problems, however, exist with the proposal. Some want to ensure that newborns are screened only for treatable conditions on grounds that it would be too burdensome to discover one is carrying the gene for a late-onset disease that cannot be prevented. Others want to make sure that insurance coverage for individuals and their families is... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Breaking the Readmission CycleBrian HattenI want to share the story of my difficult patient Ms. L. She has twenty-seven current medical issues. Thirty-five active prescriptions. Limited mobility requiring the use of a motorized scooter. Non-medical care gaps. And over twenty hospital admissions since 2020. I met Ms. L approximately five years ago as her hospital attending and have continued to care for her during her frequent hospitalizations. I could (...) recite this 77-year-old female's litany of medical problems. But sufficed to say, her history is complex, with her admitting diagnoses running the gambit from cellulitis to gastrointestinal bleeding to altered mental status. But, her diagnosis and frequent exacerbations of congestive heart failure (CHF) are particularly frustrating for us both and will be my focus today.CHF makes her susceptible to fluid overload leading to feelings of shortness of breath, which progresses to respiratory distress. Like other individuals with CHF, she uses diuretics to prevent herself from becoming fluid overloaded. And, like many individuals who take diuretics, she hates them. She (un)affectionately calls her water pills "the bomb" because the effect is sudden, profound, and explosive when they begin working. The combination of the diuretic effect and her limited mobility causes significant emotional stress for Ms. L, a woman who values presenting herself outwardly as in control, well-dressed, and put together. Her dislike of the medical effect of her diuretics has led to her either taking them less often or outright discontinuing them. So, while discontinuation avoids those frustrating effects, it leads to fluid accumulation, subsequent respiratory distress, and readmission to the hospital.Her medical records mention she has memory issues. It is unclear how much her mild cognitive impairment affects her frequent readmissions. We have had many conversations where I would never suspect something was amiss. But sometimes, she can be forgetful and does not recall our recent discussions. That being said, she knows the names and uses of her medications. She can report to me her home weights when she checks them and knows what her "dry" weight should be. Yet, she does not act when her scales begin reading heavier or when she develops leg swelling. Instead, she presents to the emergency department in extremis. When directly questioned about why she lets her situation deteriorate to such a state that she requires hospitalization, she demurs. She comments that she can often be stubborn, that the diuretic effect of "the bomb" is burdensome, but always reminds me she is honest in admitting she wasn't taking her water pills.During several admissions, I worried for her survival after she had self-discontinued her medications and showed up at the emergency department in respiratory failure. For any patient with recurrent admissions, I discuss their overall goals of care to ensure we are working together toward achievable medical ends. But this conversation was essential to have with Ms. L. The possibility existed that she would present to the hospital too late in her disease process, and we would not be able to correct her respiratory failure. I wanted to ensure that the hospital staff and I respected her wishes regarding her care. Despite raising my concerns, she would [End Page 22] decline to discuss her wishes. Even worse, attempting to have her complete advance care planning documents like advance directives or a Physician Orders for Life-Sustaining Treatment (POLST) form was a futile endeavor. Ms. L was always vague and non-committal. She simply did not want to engage in those types of conversations. When asked why she declined to discuss these issues, Ms. L would reply that she was doing okay, the discussion was unnecessary, and she had family members to make those decisions for her.Caring for her during her hospital stays was a source of professional frustration for me. Her recurrent admissions made me feel like I was failing her. During each hospital stay, we would go over her medications. We repeatedly discussed how she should check her weights daily and monitor for lower extremity edema. We created multiple action plans for when to call her physicians so we could head off another hospital visit. We completed all the... (shrink)

The criterion of 1 John for preferring John’s community over the secessionists is that the former love one another: John’s heart does not accuse him. Expressions in 1 John and Brown’s commentary suggest that knowledge by affective connaturality and recent neuroscience furnish exegetical access to this text. John’s appeal to the accusing heart is to social praxis as access to doxa. John’s community can know they love and are God’s children only intersubjectively, in the social. John’s heart should accuse him. (...) Were his heart changed, love for the secessionists would not be burdensome. John’s community became a sect because their love never became love for their enemies. (shrink)

Currently, euthanasia is officially allowed only in a number of countries, in most countries, as well as in the Russian Federation, it is prohibited by law. However, in clinical practice, there are a large number of incurable patients who experience intractable pain, so the problem of euthanasia is relevant. Aim: to analyze the current state of the problem of euthanasia and palliative care in pulmonology. Material and methods: review of domestic and foreign literature on the problem of euthanasia over the (...) past 10 years has been carried out. Literature search was carried out using the e-library and PubMed databases. Results: We present a medical and philosophical perspective. Currently, euthanasia is a way to quickly and painlessly die if there is a serious illness that is incurable, suffering and pain. The best and perhaps the only alternative to euthanasia is palliative care. In pulmonology, palliative care focuses on early detection of respiratory failure, dyspnea, fear and pain relief. The effective organization of palliative care in respiratory medicine depends on the well-coordinated work of pulmonologists, physiotherapists, nurses, and psychologists. Conclusion: The problem of euthanasia to date still remains controversial from both medical and ethical points of view. The adoption of euthanasia by law may be a deterrent to governments from funding research into new treatments. The risk of abuse of euthanasia in order to obtain organs for transplantation or to get rid of seriously ill burdensome relatives cannot be ruled out. It is necessary to consider the issue of introducing additional educational cycles on the issues of modern achievements in palliative medicine, technical means of rehabilitation and the peculiarities of their use in patients with various diseases in the terminal stage in the training of doctors and nurses. (shrink)

Research has found an inverse relationship between posttraumatic growth and suicidal ideation in military and community samples that holds when controlling for other suicide risk factors. However, further research is needed into the underlying mechanisms to clarify how PTG protects against the formation of suicidal ideation. The current two-wave longitudinal study examined whether perceiving PTG from recent adverse circumstances while in a national lockdown during the COVID-19 pandemic attenuated the positive relationship of two interpersonal suicide risk factors – perceived burdensomeness (...) and thwarted belonginess –over 6 weeks. Participants were recruited online from Prolific from income-deprived areas in the United Kingdom. Post-hoc power analyses indicated we had insufficient power to examine the hypothesised mediation for TB. We examined whether PTG mediated the relationship between PB at wave 1 and wave 2 while controlling for depression and anxiety in a sample of individuals at-risk for suicidal ideation. PTG did significantly and partially mediate the positive relationship between PB at wave 1 and 2. We discuss the theoretical and clinical implications that could result if future research successfully replicates these initial exploratory findings. (shrink)

The conscientious refusal to dispense emergency contraception is legally protected in fourteen states. While the ethical dimensions of these objections have been explored within moral and feminist philosophy, conscientious refusal to the over-the-counter sale of EC has not been significantly studied through an egalitarian lens, especially with attention to the existing reproductive healthcare landscape in which these refusals occur. This article argues, through Amartya Sen’s capability approach, that conscientious refusal to EC creates a burdensome inequality for people wishing to (...) prevent pregnancy that manifests within a background of historical injustices, elevating its importance in our weighing of capabilities. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managing the Transition from Patient-Centered Care to ProtocolDavid SlakterI learned that I would need a kidney transplant in the summer of 2015. This was not a complete surprise to me, as I had been subjected to a number of tests and invasive procedures to investigate nephritis since I was a child. I had heard similar stories of clinicians performing repeated tests on my father for similar reasons without any (...) conclusions. Following my recommendation for transplant and consultation with genomics specialists, the cause of my kidney failure was determined to be Alport syndrome. What made Alport syndrome so difficult to diagnose in my case was that the associated mutation is a rare, autosomal-dominant one that has only recently been associated with the condition.After reviewing the data on survival rates for transitioning to dialysis versus a transplant, my family and I then considered the success rates for living versus cadaver donors, and the success rates at various transplant centers. The current data favor the long-term outcomes of transplant over dialysis and living over cadaver donors. Since we had decided to focus on searching for a live donor, my nephrologist recommended contacting Renewal, an organization that specializes in connecting those in need of a kidney transplant with live donors and providing support for donors to make the donation process less burdensome.On Renewal’s recommendation, my family and friends reached out across their social networks to search for potential donors. Many of those tested for compatibility were eliminated on basic matching criteria, others due to previously undiagnosed medical problems. Finally, the wife of a childhood friend came forward as an eligible donor and was also an incredibly close match on the antigens tested for kidney transplants.Having a living donor who was also a friend made the transplant experience somewhat less intimidating than it might have been. It meant the transformation of an existing relationship with someone already close to me, with fewer open questions about what may have motivated them to be so generous than if the donor had been someone I did not know. It also meant our families could be together in the waiting room, and that we shared in each other’s recoveries.Life post-transplant has been a significant improvement from what it was like immediately beforehand. Before my transplant, I regularly weighed food and consulted nutrition charts to gauge how much potassium I was consuming. To prevent too much potassium from building up in my bloodstream, I had to take sodium polystyrene [End Page 111] regularly. As one might guess from the name, it tastes much like burnt Styrofoam, and I could only ingest it with copious amounts of fruit-flavored syrup (strawberry covered up the awful flavor the best). There are other potassium binders on the market now, so fewer people with kidney failure will likely need to engage in such gustatory experimentation.I was also able to engage in more activities than what was possible even years before my transplant. I had long experienced difficulty with aerobic exercises, but assumed the reason was merely being out of shape. Though I have always walked regularly, even the one-mile walk from my office to my apartment had become a chore by the end. Within a few months after my transplant, I was riding a bicycle all over NYC, from Harlem to Brooklyn and back regularly, and hiking trails in nearby state parks. I began sessions with a personal trainer and attained a level of fitness I had not reached since I played soccer as a child.The transition from personalized care to one more driven by protocol has been a surprising and challenging aspect of the transplant process. While my previous experience with medical treatment has been individual meetings with physicians, my post-transplant care is managed by a team of nephrologists and other specialists in transplant care. My initial transplant nephrologist was automatically assigned to me. Because the standard of care for transplant patients is often driven by protocol, my assigned nephrologist recommended a biopsy on my transplanted kidney due to results in my recent lab tests. When pressed on the necessity of a biopsy in my case versus... (shrink)

Open access. This open-access book discusses vulnerability and the protection-inclusion dilemma of including those who suffer from serious poverty, severe stigma, and structural violence in research. Co-written with representatives from indigenous peoples in South Africa and sex workers in Nairobi, the authors come down firmly on the side of inclusion. In the spirit of leaving no one behind in research, the team experimented with data collection methods that prioritize research participant needs over researcher needs. This involved foregoing the collection of (...) personal data and community researchers being involved in all stages of the research. In the process, the term ‘vulnerability’ was illuminated across significant language barriers as it was defined by indigenous peoples and sex workers themselves. The book describes a potential alternative to exclusion from research that moves away from traditional research methods. By ensuring that the research is led by vulnerable groups for vulnerable groups, it offers an approach that fosters trust and collaboration with benefits for the community researchers, the wider community as well as research academics. Those living in low-income settings, in dire situations that are summarized with the term ‘vulnerability’ know best what their problems are and which priorities they have. To exclude them from research for their own protection is a patronizing approach which insinuates that researchers and research ethics committees know best. The team from this book have shown that minimally risky and minimally burdensome research tailored towards the needs of highly marginalized and stigmatized communities can be scientifically valuable as well as inclusive and equitable. I congratulate them. Prof. Klaus Leisinger, President Global Values Alliance, Former personal advisor to Kofi Annan on corporate responsibility. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:498 BOOK REVIEWS generations of theologians across denominational lines. Both Placher and Hunsinger at the end of their essays choose quotations from within Frei's own writings to give a synoptic portrait of the man and his work. Placher chooses a remark about Niebuhr's sense of vocation as a theologian (20), and Hunsinger one about knowledge of that seemingly elusive reality, a person's identity (257). However one might come away (...) from this challenging collection of essays, further confused or more enlightened, more in agreement or disagreement, I think every reader will recognize the coincidence of intellectual perspicuity and generosity with passionate faith. Regis College, Toronto School of Theology Toronto, Ontario, Canada GEORGE P. SCHNER, S.J. Reasoned Faith. Edited by ELEONORE STUMP. Ithaca, N.Y.: Cornell University Press, 1993. Pp. x + 364. As the editor remarks in her "Introduction," it is not so long ago that the analytical philosophy of religion consisted very largely of discussions of the meaningfulness of religious language, and of arguments about the existence of God. Nowadays it is more adventurous, ranging over such topics as creation, providence, and God's responsibility for sin. According to Robert Merrihew Adams, the statement "truth is subjectivity," though one of the most famous, is also one of the most misunderstood in Kierkegaard's writings. He argues that, taken in context within the Concluding Unscientifu: Postscript, the statement is by no means incompatible with the objective truth of religious belief. From the point of view of the Postscript, a member of an idolatrous community who prays to her God with "the entire passion of the infinite" has more of the truth than one who prays in a false spirit from within Christendom; but this implies that the latter does have some truth. Whatever the deficiencies in her faith, she is clearly admitted to be in possession of the true concept of God objectively speaking (223 ). Adams maintains, quite rightly in the reviewer's opinion, that the Postscript is excessively pessimistic about the integration of the ideals of subjectivity and objectivity, of passionate commitment on the one side and rational assessment of evidence on the other, in religious faith (21). A useful distinction is made by Scott MacDonald between "occurrent" and "dispositional" belief; this seems to resolve some of the more puzzling paradoxes about the relation of the more cognitive and propositional side of faith to other aspects which may be thought essential to it. The demons alluded to by St. James (2:19) might believe dispositionally that their highest fulfillment BOOK REVIEWS 499 was to be found in obeying the divine will, and so performing acts of charity and service to other creatures. But to avoid the inconvenience of acting in such a way, they could think of God occurrently as just a powerful being who makes burdensome demands (55). For MacDonald, the cognitive component of faith has only two elements, belief that certain propositions are true, and belief that the kind of response of the will which is also essential to faith may be grounded on these (56). "We can make sense of Christian faith if we think of it simply as belief that Christianity is true plus an appropriate volitional response to that truth" (69). Against mainline Christian accounts like those of Augustine and Aquinas, he sees no good reason to suppose that one cannot have faith in propositions for which one has conclusive proof, but only in those for which one's justification is relatively weak. He provides interesting grounds for contradiction of a view which has been expounded by both Robert Adams and John Hick, that only such uncertainty can ground the trust which is essential to the relationship which human beings ought to have to God (59). "My ability to love and trust my wife, to commit myself without reservation to her well-being and to the goals and purposes we have chosen as definitive of our common life seem in no way dependent on my being uncertain about what she is like or what she will do" (60). On the question of how faith ought to be related to the demands of reason, Robert Audi remarks that, up to the middle 1970s... (shrink)

The individual and society: Meerloo, J. A. M. Freedom--our mental backbone. Allport, G. Freedom. Marcuse, H. The new forms of control. Kerr, W. A. Psychology of the free competition of ideas. Eysenck, H. J. The technology of consent. Dewey, J. Toward a new individualism. Emerson, R. W. Self-reliance. Fromm, E. Freedom and democracy.--Religion and the inner man: St. Augustine. The freedom and the will. Mercier, L. J. A. Freedom of the will and psychology. Dostoyevsky, F. The grand inquisitor. Berdyaev, N. (...) Master, slave and free man. Buber, M. I and thou. Govinda, A. Time and space and the problem of free will. Prabhavananda, S. Control of the subconscious mind.--Philosophy and philosophical psychology: Bergson, H. Psychological determinism. James, W. The dilemma of determinism. Mill, J. S. The freedom of the will. Sartre, J. P. Being and doing: freedom. Wyschogrod, M. Sartre, freedom and the unconscious. May, R. Will, decision and responsibility: summary remarks. Knight, R. P. Determinism, "freedom," and psychotherapy. Royce, J. Meaning, value, and personality.--Selected bibliography (p. 393-408). (shrink)