Moral dilemmas in (not) treating patients who feel they are a burden

Working as clinical ethicists in an academic hospital, we find that practitioners tend to take a principle‐based approach to moral dilemmas when it comes to (not) treating patients who feel like a burden, in which respect for autonomy tends to trump other principles. We argue that this approach insufficiently deals with the moral doubts of professionals with regard to feeling that you are a burden as a motive to decline or withdraw from treatment. Neither does it take into adequately account the specific needs of the patient that might underlie their feeling of being a burden to others. We propose a care ethics approach as an alternative. It focuses on being attentive and responsive to the caring needs of those involved in the care process—which can be much more specific than either receiving or withdrawing from treatment. This approach considers these needs in the context of the patient's identity, biography and relationships, and regards autonomy as relational rather than as individual. We illustrate the difference between these two approaches by means of the case of Mrs K. Furthermore, we show that a care ethics approach is in line with interventions that are found to alleviate feeling a burden and maintain that facilitating moral case deliberation among practitioners can supports them in taking a care ethics approach to moral dilemmas in (not) treating patients who feel like a burden.     

Mental competence and long term care: an uncomfortable relationship

Competency is an important concept in medical ethics as well as in law. It refers to the moral principles of self-determination and autonomy, which are of central importance in the ethics of health care. These moral principles also prevail in nursing home care. Societal prejudice concerning nursing home patients suggests that the inhabitants of a nursing home are almost by definition incompetent. We assert that such prejudice rests on certain societal delusions and misinterpretations of incompetency five of which are subsequently analysed. Next we discuss the dominant conception of competency in terms of decisional capacity. This conception is predominantly oriented towards cognitive abilities and underplays affective capacities. We confront this dominant conception with an alternative proposal of competency in terms of 'the capacity to value', which--to our opinion--more properly reflects nursing home practice concerning questions of competency. Finally we address the limitations of any concept of competency or decisional capacity in relation to the moral issues of 'good care' for demented elderly. As an alternative we draw attention to the moral perspective of the 'ethics of care'.     

Parental Moral Distress and Moral Schism in the Neonatal ICU

Ethical dilemmas in critical care may cause healthcare practitioners to experience moral distress: incoherence between what one believes to be best and what occurs. Given that paediatric decision-making typically involves parents, we propose that parents can also experience moral distress when faced with making value-laden decisions in the neonatal intensive care unit. We propose a new concept—that parents may experience “moral schism”—a genuine uncertainty regarding a value-based decision that is accompanied by emotional distress. Schism, unlike moral distress, is not caused by barriers to making and executing a decision that is deemed to be best by the decision-makers but rather an encounter of significant internal struggle. We explore factors that appear to contribute to both moral distress and “moral schism” for parents: the degree of available support, a sense of coherence of the situation, and a sense of responsibility. We propose that moral schism is an underappreciated concept that needs to be explicated and may be more prevalent than moral distress when exploring decision-making experiences for parents. We also suggest actions of healthcare providers that may help minimize parental “moral schism” and moral distress.     

Health care ethics and health law in the Dutch discussion on end-of-life decisions: a historical analysis of the dynamics and development of both disciplines

Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction (Abbott) and the assignment of responsibilities (Gusfield). This theoretical framework prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as 'intentionally taking the life of another person by a physician, upon that person's request' can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction.     

Care and the problem of pity

In recent years philosophers and bioethicists have given considerable attention to the concept of care. Thus we have seen important work on questions such as: whether there is a uniquely female approach to ethics, whether ethics should be partial or impartial, and whether care must be supplemented by justice. Despite this valuable and extensive work, however, some important distinctions have gone largely undiscussed. This paper tries to fill a gap left in our understanding of the concept of care itself by distinguishing between compassion and two kinds of pity. While all three are kinds of caring, we should not give them similar moral evaluations. Consequently, the distinction between compassion and different kinds of pity gives us an important insight into the question of whether we can consider care a virtue for health care professionals.     

生态文明时期道德观的新视角

道德和道德观念是随着人类社会历史发展以及社会实践活动的深化而不断发展变化的。人们依据不同发展阶段的特征,提出符合时代发展趋势的道德原则、道德规范和道德标准,以推动道德进步。现在人类社会开始进入由工业文明向生态文明迈进的发展新阶段,因而,时代要求转变以往支配人们行动的旧道德观,打破狭隘的视野局限,把原有道德观仅仅局限于人与人之间、人与社会之间扩展到人与自然之间,以人与自然和谐发展作为生态文明时期的道德准则。这种新的道德观要求树立崭新的生态意识,坚持公正和平等的原则。以约束人类行为,提高人的生态道德修养为宗旨。使人类的社会实践活动有利于资源的持续利用和环境保护,倡导过一种适度消费的文明生活。     

生态文明时期道德观的新视角

道德和道德观念是随着人类社会历史发展以及社会实践活动的深化而不断发展变化的。人们依据不同发展阶段的特征,提出符合时代发展趋势的道德原则、道德规范和道德标准,以推动道德进步。现在人类社会开始进入由人工业文明向生态文明迈进的发展新阶段,因而,时代要求转变以往支配人们行动的旧道德观,打破狭隘的视野局限,把原有道德观仅仅局限于人与人之间、人与社会之间扩展到人与自然之间,以人与自然和谐发展作为生态文明时期的道德准则。这种新的道德观要求树立崭新的生态意识,坚持公正和平等的原则。以约束人类行为,提高人的生态道德修养为宗旨。使人类的社会实践活动有利于资源的持续利用和环境保护,倡导过一种适度消费的文明生活。     

Great Expectations: Teaching Ethics to Medical Students in South Africa

Many academic philosophers and ethicists are appointed to teach ethics to medical students. We explore exactly what this task entails. In South Africa the Health Professions Council's curriculum for training medical practitioners requires not only that students be taught to apply ethical theory to issues and be made aware of the legal and regulatory requirements of their profession, it also expects moral formation and the inculcation of professional virtue in students. We explore whether such expectations are reasonable. We defend the claim that physicians ought to be persons of virtuous character, on the grounds of the social contract between society and the profession. We further argue that since the expectations of virtue of health care professionals are reasonable, it is also sound reasoning to expect ethics teachers to try to inculcate such virtues in their students, so far as this is possible. Furthermore, this requires of such teachers that they be suitable role models of ethical practice and virtue, themselves. We claim that this applies to ethics teachers who are themselves not members of the medical profession, too, even though they are not bound by the same social contract as doctors. We conclude that those who accept employment as teachers of ethics to medical students, where as part of their contractual obligation they are expected to inculcate moral values in their students, ought to be prepared to accept their responsibility to be professionally ethical, themselves.     

Monological versus dialogical consciousness: two epistemological views on the use of theory in clinical ethical practice

In this article, we argue that a critical examination of epistemological and anthropological presuppositions might lead to a more fruitful use of theory in clinical-ethical practice. We differentiate between two views of conceptualizing ethics, referring to Charles Taylors' two epistemological models: 'monological' versus 'dialogical consciousness'. We show that the conception of ethics in the model of 'dialogical consciousness' is radically different from the classical understanding of ethics in the model of 'monological consciousness'. To reach accountable moral judgments, ethics cannot be conceptualized as an individual enterprise, but has to be seen as a practical endeavor embedded in social interactions within which moral understandings are being negotiated. This view has specific implications for the nature and the role of ethical theory. Theory is not created in the individual mind of the ethicist; the use of theory is part of a joint learning process and embedded in a cultural context and social history. Theory is based upon practice, and serves practical purposes. Thus, clinical ethics support is both practical and theoretical.     

Regarding zygotes as persons: implications for public policy

In this paper, we examine the notion put forward by certain groups (largely as a consequence of their opposition to elective abortion) that the immediate post-fertilization cellular entity - the zygote - is a person and should be given full moral status. Because the zygote has none of the inherent characteristics necessary to be regarded as a person in the traditional philosophical sense (e.g., John Locke or Immanuel Kant), some advocates of this position attempt to advance their case with arguments based on the genetic potential of the human zygote to develop into a person. We argue that this position represents a flawed use of human genetics and ignores the extraordinarily inefficient and wasteful nature of human reproduction. We then explore the public policy consequences that would follow from granting the zygote full moral status. We conclude that the logical consequences of granting the zygote full moral status would require a revolutionary restructuring of many basic social institutions, especially the health care system. The social, political, and economic changes that would be required if the zygote is enshrined as a person in law constitute a convincing reductio ad absurdum that demonstrates the danger in taking this position seriously.     

Parental virtue: a new way of thinking about the morality of reproductive actions

In this paper I explore the potential of virtue ethical ideas to generate a new way of thinking about the ethical questions surrounding the creation of children. Applying ideas from neo‐Aristotelian virtue ethics to the parental sphere specifically, I develop a framework for the moral assessment of reproductive actions that centres on the concept of parental virtue. I suggest that the character traits of the good parent can be used as a basis for determining the moral permissibility of a particular reproductive action. I posit three parental virtues and argue that we can see the moral status of a reproductive action as determined by the relationship between such an action and (at least) these virtues. Using a case involving selection for deafness, I argue that thinking in terms of the question ‘would a virtuous parent do this?’ when morally assessing reproductive action is a viable and useful way of thinking about issues in reproductive ethics.     

REFLECTIVE EQUILIBRIUM AND EMPIRICAL DATA: THIRD PERSON MORAL EXPERIENCES IN EMPIRICAL MEDICAL ETHICS

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached.     

Reciprocity‐Based Reasons for Benefiting Research Participants: Most Fail,the Most Plausible is Problematic

A common reason for giving research participants post‐trial access (PTA) to the trial intervention appeals to reciprocity, the principle, stated most generally, that if one person benefits a second, the second should reciprocate: benefit the first in return. Many authors consider it obvious that reciprocity supports PTA. Yet their reciprocity principles differ, with many authors apparently unaware of alternative versions. This article is the first to gather the range of reciprocity principles. It finds that: (1) most are false. (2) The most plausible principle, which is also problematic, applies only when participants experience significant net risks or burdens. (3) Seldom does reciprocity support PTA for participants or give researchers stronger reason to benefit participants than equally needy non‐participants. (4) Reciprocity fails to explain the common view that it is bad when participants in a successful trial have benefited from the trial intervention but lack PTA to it.     

Cotrimoxazole Prophylaxis and Tuberculosis Risk among People Living with HIV

Objectives

Many randomized and cohort studies have reported a survival benefit with cotrimoxazole prophylaxis without detecting a difference in tuberculosis (TB) incidence by cotrimoxazole status. However, several in vitro studies have reported that cotrimoxazole possesses anti-TB activity. We sought to compare TB incidence and TB diagnostic yield by cotrimoxazole use among participants in a well characterized cohort of HIV-infected adults living in a high TB prevalence region.

Methods

We analyzed prospective data from a long-term longitudinal cohort of adults receiving HIV care and TB investigations in Soweto, South Africa. Using longitudinal analysis, we compared total and laboratory confirmed TB incidence by cotrimoxazole status as well as all-cause mortality. In addition, we compared TB culture results by cotrimoxazole status.

Results

In a multivariable analysis, adjusted for sex, body mass index, WHO clinical stage, time-updated CD4 count, and antiretroviral therapy status, we observed an association between cotrimoxazole and an increase in TB incidence (hazard ratio 1.7, 95% CI: 1.2, 2.2). However, when restricted to laboratory-confirmed TB, there was no association between cotrimoxazole and TB incidence (hazard ratio: 0.97, 95% CI: 0.39, 2.4). In TB cases, we found no difference in the proportion of positive sputum cultures or days to culture positivity by cotrimoxazole status. Cotrimoxazole was associated with a reduction in mortality.

Conclusions

In this cohort with a mortality benefit from cotrimoxazole, we found an increased risk of all TB among individuals using cotrimoxazole, likely a result of residual confounding, but no association between use of cotrimoxazole and laboratory-confirmed TB. Cotrimoxazole did not compromise TB diagnosis.     

Ethics of care and HIV: a case for rural women in India

Recent literature shows that ethics of care can be used as a theoretical basis to add a new, important dimension to social issues. This paper argues for a similar extension of the theoretical support from ethics of care to an area in bioethics. Specifically, it contends that a justification based ethics of care can be constructed to argue for a moral obligation to give some priority in the HIV-related initiatives to one of most vulnerable groups; namely, the rural women in India. In an epidemic situation this care-based approach has certain advantages as a moral justification over the usual traditional approaches.     

Indirect reciprocity and the evolution of “moral signals”

Signals regarding the behavior of others are an essential element of human moral systems and there are important evolutionary connections between language and large-scale cooperation. In particular, social communication may be required for the reputation tracking needed to stabilize indirect reciprocity. Additionally, scholars have suggested that the benefits of indirect reciprocity may have been important for the evolution of language and that social signals may have coevolved with large-scale cooperation. This paper investigates the possibility of such a coevolution. Using the tools of evolutionary game theory, we present a model that incorporates primitive “moral signaling” into a simple setting of indirect reciprocity. This model reveals some potential difficulties for the evolution of “moral signals.” We find that it is possible for “moral signals” to evolve alongside indirect reciprocity, but without some external pressure aiding the evolution of a signaling system, such a coevolution is unlikely.     

Playing God and the ethics of divine names: an Islamic paradigm for biomedical ethics

The notion of 'playing God' frequently comes to fore in discussions of bioethics, especially in religious contexts. The phrase has always been analyzed and discussed from Christian and secular standpoints. Two interpretations exist in the literature. The first one takes 'God' seriously and playing 'playfully'. It argues that this concept does state a principle but invokes a perspective on the world. The second takes both terms playfully. In the Islamic Intellectual tradition, the Sufi concept of 'adopting divine character traits' provides a legitimate paradigm for 'playing God'. This paradigm is interesting because here we take both terms 'God' and 'playing' seriously. It is significant for the development of biomedical ethics in contemporary Islamic societies as it can open new vistas for viewing biotechnological developments.     

Free riders and pious sons--why science research remains obligatory

John Harris has previously proposed that there is a moral duty to participate in scientific research. This concept has recently been challenged by Iain Brassington, who asserts that the principles cited by Harris in support of the duty to research fail to establish its existence. In this paper we address these criticisms and provide new arguments for the existence of a moral obligation to research participation. This obligation, we argue, arises from two separate but related principles. The principle of fairness obliges us to support the social institutions which sustain us, of which research is one; while the principle of beneficence, or the duty of rescue, imposes upon us a duty to prevent harm to others, including by supporting potentially beneficial, even life-saving research. We argue that both these lines of argument support the duty to research, and explore further aspects of this duty, such as to whom it is owed and how it might be discharged.     

Guidance and Justification in Particularistic Ethics

This paper argues that, contrary to a common line of criticism followed by scholars such as Helga Kuhse, a particularistic version of virtue ethics properly elaborated, can provide sound moral guidance and a satisfactory account for moral justification of our opinions regarding, for instance, health care practice. In the first part of the paper, three criteria for comparing normative theories with respect to action-guiding power are outlined, and it is argued that the presented particularistic version of virtue ethics actually can provide more guidance than the universalistic theories favoured by Kuhse and others. In the second part of the paper it is claimed that universalist normative theories have serious problems accounting for the role that moral principles are supposed to play in the justification, of moral opinions, whereas the present version of virtue ethics accommodates a plausible alternative idea of justification without invoking moral principles or eschewing objectivity.