END‐OF‐LIFE CARE IN THE 21st CENTURY: ADVANCE DIRECTIVES IN UNIVERSAL RIGHTS DISCOURSE

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context‐specific and culture‐specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end‐of‐life decision‐making.     

Withdrawal of artificial nutrition and hydration for patients in a permanent vegetative state: changing tack

In the United States, the decision of whether to withdraw or continue to provide artificial nutrition and hydration (ANH) for patients in a permanent vegetative state (PVS) is placed largely in the hands of surrogate decision-makers, such as spouses and immediate family members. This practice would seem to be consistent with a strong national emphasis on autonomy and patient-centered healthcare. When there is ambiguity as to the patient's advanced wishes, the presumption has been that decisions should weigh in favor of maintaining life, and therefore, that it is the withdrawal rather than the continuation of ANH that requires particular justification. I will argue that this default position should be reversed. Instead, I will argue that the burden of justification lies with those who would continue artificial nutrition and hydration (ANH), and in the absence of knowledge as to the patient's advanced wishes, it is better to discontinue ANH. In particular, I will argue that among patients in PVS, there is not a compelling interest in being kept alive; that in general, we commit a worse violation of autonomy by continuing ANH when the patient's wishes are unknown; and that more likely than not, the maintenance of ANH as a bridge to a theoretical future time of recovery goes against the best interests of the patient.     

A proposal for the use of advance directives in the treatment of incompetent mentally ill persons

[M]y question is how these patients while competent might be able to give their own informed consent to treatment, despite being both unwilling and incompetent to do so when treatment is to be begun, thereby reducing the need to relax the dangerousness criteria for involuntary commitment. It is uncontroversial that the dangerousness requirement would be too restrictive for all treatment of mental illness. When competent patients voluntarily seek and/or accept treatment for their mental illness, neither public policy nor medical practice restricts treatment to those patients judged to be dangerous. Instead, criteria should be and generally are comparable to those for the treatment of physical illness -- whether the patient is ill, in this case mentally ill, and likely to benefit from treatment. Through use of advance directives, it would be possible for mentally ill persons who are currently refusing treatment to give prior consent, while competent and with their disease in remission, to treatment at a later time when they are incompetent, have become noncompliant, and are refusing treatment. My proposal is certainly not entirely novel, since others have made similar proposals under the heading of Ulysses contracts and voluntary commitment contracts. Addressing briefly some of the criticisms of these earlier proposals will bring out one fundamental difference between them and my proposal here for a new use of advance directives -- whether the patient must then be incompetent when the contract or directive made earlier is later invoked -- a difference I shall argue strongly favors my proposal.     

Advanced directives. Legal and practical aspects of negative instructions concerning medical treatment

The right of a competent patient to stipulate in advance of possible non-competence, medical treatment he does not want, is based on the fundamental legal principle that a person cannot be medically treated without his informed consent. It is in Dutch law a strong and almost unqualified right. There are indications in the international literature, however, that advance directives in many cases may not have much influence on medical treatment at the end of life. Very little is known about the social practice of advance directives in the Netherlands.     

The Meta‐Nudge – A Response to the Claim That the Use of Nudges During the Informed Consent Process is Unavoidable

Richard Thaler and Cass Sunstein, in Nudge: Improving Decisions About Health, Wealth, and Happiness, assert that rejecting the use nudges is ‘pointless’ because ‘[i]n many cases, some kind of nudge is inevitable’. Schlomo Cohen makes a similar claim. He asserts that in certain situations surgeons cannot avoid nudging patients either toward or away from consenting to surgical interventions. Cohen concludes that in these situations (assuming surgeons believe that surgery is the best option for their patients), nudging patients toward consenting to surgical interventions is (at the very least) uncriticizable or morally permissible. I call this argument: The Unavoidability Argument. In this essay, I will respond to Cohen's use of the unavoidability argument in support of using nudges during the process of informed consent. Specifically, I argue that many so‐called ‘unavoidable nudges’ are, in fact, avoidable. Although my argument is directed toward Cohen's use of the unavoidability argument, it is applicable to the unavoidability argument more generally.     

Who are we when we are doing what we are doing?: the case for mindful embodiment in ethics case consultation

This paper explores the theory and practice of embodied epistemology or mindful embodiment in ethics case consultation. I argue that not only is this epistemology an ethical imperative to safeguard the integrity of this emerging profession, but that it has the potential to improve the quality of ethics consultation (EC). It also has implications for how ethics consultants are trained and how consultation services are organized. My viewpoint is informed by ethnographic research and by my experimental application of mindful embodiment to the development of an ethics consultation service. My argument proceeds in four phases. First I explore the notion of 'situatedness' in the bioethics literature, identifying gaps in the field's theories as they apply to EC. I then describe my theoretical approach to embodiment grounded in critical-interpretive medical anthropology and autoethnography. I use embodiment to refer to a moral epistemology grounded in the body, comprised of the interplay of physical, symbolic, intersubjective and political elements. Third, I describe how mindful embodiment can inform the role of the ethics consultant and the development of effective training techniques, vocabularies and processes for EC. I also discuss the benefits of this orientation, and the potential harms of ignoring the embodied dimensions of EC. My goals are to expose the fallacy of the 'theory-practice gap', to demonstrate how my own EC practice is deeply informed by this theoretical orientation, and to argue for a wider definition of what 'counts' as relevant theory for ethics consultation.     

Advancing an advance directive debate

A challenge has recently been levelled against the legal and/or moral legitimacy of some advance directives. It has been argued that in certain cases an advance directive carries no weight in a decision on whether to withhold treatment, since the individual in the debilitating state is not the same person as the person who created the advance directive. In the first section of this paper, I examine two formulations of the argument against the moral legitimacy of the advance directives under review. The second section reviews, and criticizes, an objection to such arguments. In the penultimate section, possible models supporting the viability of the advance directives are considered. The final section makes good on an obligation incurred by the title of the paper.     

The debate over risk-related standards of competence

This discussion paper continues the debate over risk-related standards of mental competence which appears in Bioethics 5. Dan Brock there defends an approach to mental competence in patients which defines it as being relative to differing standards, more or less rigorous depending on the degree of risk involved in proposed treatments. But Mark Wicclair raises a problem for this approach: if significantly different levels of risk attach, respectively, to accepting and refusing the same treatment, then it is possible, on this account, for a patient to be considered competent to accept, but not refuse, the treatment, or vice versa. I argue that this puzzle does not constitute a genuine problem for a risk-related standard.
To this end I focus on the situation where, of two mutually exclusive options, one is riskier, but offering more pronounced benefit, while the other is safer, but offering less benefit. I argue for this proposition: it can take far less insight to know that the safe option is good than to know that the risky option is better. Now say one is actually informed enough to know that the safe option is good, but not enough to know whether the risky option is better; in such a case one is competent to say yes to that first option (the safe one), but not to say yes to the other. (I argue in passing that Pascal's Wager can be interpreted as having precisely this deliberative structure.)
I thus conclude that cases do indeed exist where one can be competent to say yes but not no, or vice versa; and that it is thus not an anomaly in the risk-related standard that it entails the existence of such cases.     

End‐of‐life decision‐making and advance care directives in Italy. A report and moral appraisal of recent legal provisions

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.     

HUMAN GENE THERAPY: DOWN THE SLIPPERY SLOPE?

The strength of a slippery slope argument is a matter of some dispute. Some see it as a reasonable argument pointing out what probably or inevitably follows from adopting some practice, others see it as essentially a fallacious argument. However, there seems to be a tendency emerging to say that in many cases, the argument is not actually fallacious, although it may be unsubstantiated. I shall not try to settle this general discussion, but merely seek to assess the strength of the slippery slope argument applied to human gene therapy. The structure of my argument will be the following. First, I shall distinguish between three different versions of the slippery slope argument; two logical versions and an empirical one. Next, I will address human gene therapy in terms of each of the three versions, partly relying on slippery slope arguments against this practice that have already surfaced in the literature. I shall argue that neither version pulls through. The logical versions fail primarily because relevant distinctions can be made between different uses of gene therapy, contrary to what the proponents of the arguments claim. The empirical version fails because there seems to be no evidence supporting the claim that we shall in fact slide down the slope if we engage in gene therapy, and because if we accepted the conclusion that we should not allow gene therapy on the basis of the empirical argument, we should have to make very far-reaching and undesirable modifications in health care in general, in order to be consistent. Or at least so I shall argue.     

Dutch Protocols for Deliberately Ending the Life of Newborns: A Defence

The Groningen Protocol, introduced in the Netherlands in 2005 and accompanied by revised guidelines published in a report commissioned by the Royal Dutch Medical Association in 2014, specifies conditions under which the lives of severely ill newborns may be deliberately ended. Its publication came four years after the Netherlands became the first nation to legalize the voluntary active euthanasia of adults, and the Netherlands remains the only country to offer a pathway to protecting physicians who might engage in deliberately ending the life of a newborn (DELN). In this paper, I offer two lines of argument. The first is a positive argument for the Protocol, grounded in the good of the newborn as unanimously determined by those in a position to determine it. The second addresses the widely shared belief that the killing of newborns is morally prohibited, where I offer two arguments—one grounded in the fact that the kinds of cases the Protocol is meant to govern are very rare and highly unusual, and the other focused more broadly on the role of pre-theoretical beliefs in moral reasoning—meant to undermine the strong role that the critic of the Protocol affords this belief. I argue that, given this second line of argument, the beliefs underlying my positive argument for the Protocol are in fact more secure than the widely shared belief underlying the critic’s position.     

Rational desires and the limitation of life-sustaining treatment

It is accepted that treatment of previously competent, now incompetent patients can be limited if that is what the patient would desire, if she were now competent. Expressed past preferences or an advance directive are often taken to constitute sufficient evidence of what a patient would now desire. I distinguish between desires and rational desires. I argue that for a desire to be an expression of a person's autonomy, it must be or satisfy that person's rational desires. A person rationally desires a course of action if that person desires it while being in possession of all available relevant facts, without committing relevant error of logic, and "vividly imagining" what its consequences would be like for her. I argue that some competent, expressed desires obstruct autonomy. I show that several psychological mechanisms operate to prevent a person rationally evaluating what future life in a disabled state would be like. Rational evaluation is difficult. However, treatment limitation, if it is to respect autonomy, must be in accord with a patient's rational desires, and not merely her expressed desires. I illustrate the implications of these arguments for the use of advance directives and for the treatment of competent patients.     

THE INSIGNIFICANCE OF PERSONAL IDENTITY FOR BIOETHICS

It has long been thought that certain key bioethical views depend heavily on work in personal identity theory, regarding questions of either our essence or the conditions of our numerical identity across time. In this paper I argue to the contrary, that personal identity is actually not significant at all in this arena. Specifically, I explore three topics where considerations of identity are thought to be essential – abortion, definition of death, and advance directives – and I show in each case that the significant work is being done by a relation other than identity.     

What is the matter with transcendence? On the place of religion in the new anthropology of ethics★

A focus on ordinary or everyday ethics has become perhaps the dominant concern in the rapidly developing anthropology of ethics. In this article, I argue that this focus tends to marginalize the study of the ways in which religion contributes to people's moral lives. After defining religion and transcendence in terms that make them less uncongenial to the study of ethics than many proponents of ordinary ethics suggest, I examine values as one sometimes transcendent cultural form that often informs ethical life. I draw on Victor Turner (along with Durkheim) to develop an account of how rituals often both present people with and allow them to perform transcendent versions of values. These encounters, in turn, shape people's ethical sensibilities, including those they bring to bear in everyday life, in ways we cannot understand unless we accord religion a more central role in the anthropology of ethics than it has played to this point. I illustrate my arguments with material drawn both from Turner's Ndembu ethnography and from my own research on Christianity in Papua New Guinea.     

Work life balance?

There is no perfect recipe to balance work and life in academic research. Everyone has to find their own optimal balance to derive fulfilment from life and work. Subject Categories: S&S: Careers & Training

A few years ago, a colleague came into my office, looking a little irate, and said, “I just interviewed a prospective student, and the first question was, ‘how is work‐life balance here?’”. Said colleague then explained how this question was one of his triggers. Actually, this sentiment isn''t unusual among many PIs. And, yet, asking about one''s expected workload is a fair question. While some applicants are actually coached to ask it at interviews, I think that many younger scientists have genuine concerns about whether or not they will have enough time away from the bench in order to have a life outside of work.In a nutshell, I believe there is no one‐size‐fits‐all definition of work–life balance (WLB). I also think WLB takes different forms depending on one''s career stage. As a new graduate student, I didn''t exactly burn the midnight oil; it took me a couple of years to get my bench groove on, but once I did, I worked a lot and hard. I also worked on weekends and holidays, because I wanted answers to the questions I had, whether it was the outcome of a bacterial transformation or the result from a big animal experiment. As a post‐doc, I worked similarly hard although I may have actually spent fewer hours at the bench because I just got more efficient and because I read a lot at home and on the six train. But I also knew that I had to do as much as I could to get a job in NYC where my husband was already a faculty member. The pressure was high, and the stress was intense. If you ask people who knew me at the time, they can confirm I was also about 30 pounds lighter than I am now (for what it''s worth, I was far from emaciated!).As an assistant professor, I still worked a lot at the bench in addition to training students and writing grant applications (it took me three‐plus years and many tears to get my first grant). As science started to progress, work got even busier, but in a good way. By no means did I necessarily work harder than those around me—in fact, I know I could have worked even more. And I’m not going to lie, there can be a lot of guilt associated with not working as much as your neighbor.My example is only one of millions, and there is no general manual on how to handle WLB. Everyone has their own optimal balance they have to figure out. People with children or other dependents are particularly challenged; as someone without kids, I cannot even fathom how tough it must be. Even with some institutions providing child care or for those lucky enough to have family take care of children, juggling home life with “lab life” can create exceptional levels of stress. What I have observed over the years is that trainees and colleagues with children become ridiculously efficient; they are truly remarkable. One of my most accomplished trainees had two children, while she was a post‐doc and she is a force to be reckoned with—although no longer in my laboratory, she still is a tour de force at work, no less with child number three just delivered! I think recruiters should view candidates with families as well—if not better—equipped to multi‐task and get the job done.There are so many paths one can take in life, and there is no single, “correct” choice. If I had to define WLB, I would say it is whatever one needs to do in order to get the work done to one''s satisfaction. For some people, putting in long days and nights might be what is needed. Does someone who puts in more hours necessarily do better than one who doesn''t, or does a childless scientist produce more results than one with kids? Absolutely not. People also have different goals in life: Some are literally “wedded” to their work, while others put much more emphasis on spending time with their families and see their children grow up. Importantly, these goals are not set in stone and can fluctuate throughout one''s life. Someone recently said to me that there can be periods of intense vertical growth where “balance” is not called for, and other times in life where it is important and needed. I believe this sentiment eloquently sums up most of our lives.Now that I''m a graying, privileged professor, I have started to prioritize other areas of life, in particular, my health. I go running regularly (well, maybe jog very slowly), which takes a lot of time but it is important for me to stay healthy. Pre‐pandemic, I made plans to visit more people in person as life is too short not to see family and friends. In many ways, having acquired the skills to work more efficiently after many years in the laboratory and office, along with giving myself more time for my health, has freed up my mind to think of science differently, perhaps more creatively. It seems no matter how much I think I’m tipping the balance toward life, work still creeps in, and that’s perfectly OK. At the end of the day, my work is my life, gladly, so I no longer worry about how much I work, nor do I worry about how much time I spend away from it. If you, too, accomplish your goals and derive fulfillment from your work and your life, neither should you.     

Against Harmful Research on Non‐Agreeing Children

The Code of Federal Regulations permits harmful research on children who have not agreed to participate, but I will argue that it should be no more permissive of harmful research on such children than of harmful research on adults who have not agreed to participate. Of course, the Code permits harmful research on adults. Such research is not morally problematic, however, because adults must agree to participate. And, of course, the Code also permits beneficial research on children without needing their explicit agreement. This sort of research is also not problematic, this time because paternalism towards children may be justifiable. The moral problem at the center of this paper arises from the combination of two potential properties of pediatric research, first that it might be harmful and second that its subjects might not agree to participate. In Section 2 of this article I explain how the Code permits harmful research on non‐agreeing children. Section 3 contains my argument that we should no more permit harmful research on non‐agreeing children than on non‐agreeing adults. In Section 4, I argue that my thesis does not presuppose that pediatric assent has the same moral force that adult consent does. In Section 5, I argue that the distinction between non‐voluntary and involuntary research is irrelevant to my thesis. In Section 6, I rebut an objection based on the power of parental permission. In Section 7 I suggest how the Code of Federal Regulations might be changed.     

The Ashley Treatment: Improving Quality of Life or Infringing Dignity and Rights?

The ‘Ashley treatment’ (growth attenuation, removal of the womb and breasts buds of a severely disabled child) has raised much ethical controversy. This article starts from the observation that this debate suffers from a lack of careful philosophical analysis which is essential for an ethical assessment. I focus on two central arguments in the debate, namely an argument defending the treatment based on quality of life and an argument against the treatment based on dignity and rights. My analysis raises doubts as to whether these arguments, as they stand in the debate, are philosophically robust. I reconstruct what form good arguments for and against the treatment should take and which assumptions are needed to defend the according positions. Concerning quality of life (Section 2), I argue that to make a discussion about quality of life possible, it needs to be clear which particular conception of the good life is employed. This has not been sufficiently clear in the debate. I fill this lacuna. Regarding rights and dignity (section 3), I show that there is a remarkable absence of references to general philosophical theories of rights and dignity in the debate about the Ashley treatment. Consequently, this argument against the treatment is not sufficiently developed. I clarify how such an argument should proceed. Such a detailed analysis of arguments is necessary to clear up some confusions and ambiguities in the debate and to shed light on the dilemma that caretakers of severely disabled children face.     

Medical Anthropology: Toward a Third Moment in Social Science?

This article about medical anthropology was inspired by the work of Pierre Bourdieu, specifically, his efforts to reconcile the antinomy of a "social structuralist" and a "cultural constructivist" perspective. These perspectives are often opposed in the literature, but, in Bourdieu's view, human life cannot be studied without taking into account both how individuals are situated within and constrained by social structures and how those individuals construct an understanding of and impose meaning on the world around them. I argue that the special subject matter of medical anthropology--human health--demands that a synthetic approach be taken in our theory and research. I illustrate this argument with examples from my own research on social and cultural factors associated with blood pressure, and I point to other examples of this synthesis in medical anthropology. The results of this research hold promise for the continuing refinement of culture theory.     

How to reject Benatar's asymmetry argument

In this article I reconsider David Benatar's primary argument for anti‐natalism—the asymmetry argument—and outline a three‐step process for rejecting it. I begin in Part 2 by reconstructing the asymmetry argument into three main premises. I then turn in Parts 3–5 to explain how each of these premises is in fact false. Finally, I conclude in Part 6 by considering the relationship between the asymmetry argument and the quality of life argument in Benatar's overall case for anti‐natalism and argue that it is the latter argument that is actually doing the work. In this sense, the asymmetry argument is not only unsuccessful in generating Benatar's anti‐natalist conclusion, it is also unnecessary as well.