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.     

Abortion is incommensurable with fetal alcohol syndrome

A recent article argued for the immorality of abortion regardless of personhood status by comparing the impairment caused by fetal alcohol syndrome to the impairment caused by abortion. I argue that two of the premises in this argument fail and that, as such, one cannot reasonably attribute moral harms to abortion on the basis of the moral harms caused by fetal alcohol syndrome. The impairment argument relies on an inconsistent instantiation, which undermines the claim that personhood is irrelevant, and it does not fulfill its own ceteris paribus clause, which demands that no additional benefit be gained from abortion that would not be gained from causing fetal alcohol syndrome.     

DOES PROFESSIONAL AUTONOMY PROTECT MEDICAL FUTILITY JUDGMENTS?

Despite substantial controversy, the use of futility judgments in medicine is quite common, and has been backed by the implementation of hospital policies and professional guidelines on medical futility. The controversy arises when health care professionals (HCPs) consider a treatment futile which patients or families believe to be worthwhile: should HCPs be free to refuse treatments in such a case, or be required to provide them? Most physicians seem convinced that professional autonomy protects them from being forced to provide treatments they judge medically futile, given the lack of patient benefit as well as the waste of medical resources involved. The argument from professional autonomy has been presented in a number of articles, but it has not been subjected to much critical scrutiny. In this paper I distinguish three versions of the argument: 1) that each physician should be free to exercise his or her own medical judgment; 2) that the medical profession as a whole may provide futility standards to govern the practice of its members; and 3) that the moral integrity of each physician serves as a limit to treatment demands. I maintain that none of these versions succeeds in overcoming the standard objection that futility determinations involve value judgments best left to the patients, their designated surrogates, or their families. Nor do resource considerations change this fact, since they should not influence the properly patient‐centered judgment about futility.     

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.     

The Ethical and Legal Framework for the Decision Not to Resuscitate

Practicing physicians are frequently faced with the question of whether or not to institute cardiopulmonary resuscitation in case of cardiac or respiratory arrest in a patient in hospital. Medical training has usually not included any systematic analysis of this issue from either an ethical or a legal standpoint. Many physicians may be unaware that ethical and legal principles, as well as professional guidelines, exist to guide such decision making. In practice, physicians make this decision without the benefit of training in ethical analysis. The problem is especially acute in teaching hospitals when young physicians unacquainted with formal ethics or the law must often make decisions emergently. Studies show some discrepancy between ethical and legal principles and the actual decision making by physicians. For this reason, we recommend an approach that will enable physicians to make and implement decisions not to resuscitate that are consistent with current ethical and legal standards.     

The new paternalism

The author argues that the belief that patient autonomy has great moral value has justified a new form of medical paternalism which can have effects similar to those of the old rejected form. He cites the argument that "all illness represents a state of diminished autonomy" and that therefore autonomy is not overridden when physicians make all decisions. Another view is that, in some situations, withholding information may prevent patient deterioration and loss of autonomy. Abridgement of present autonomy, then, is permissible if it promotes future autonomy. Strasser also rejects physician decision making based on patients' previously communicated values or on the theory that patient values are important but not decisive. He concludes that if we "allow paternalistic practices, then we should admit that we are denying autonomy in light of some other good rather than claim that, somehow, we are respecting autonomy by abridging it."     

MORAL FICTIONS AND MEDICAL ETHICS

Conventional medical ethics and the law draw a bright line distinguishing the permitted practice of withdrawing life‐sustaining treatment from the forbidden practice of active euthanasia by means of a lethal injection. When clinicians justifiably withdraw life‐sustaining treatment, they allow patients to die but do not cause, intend, or have moral responsibility for, the patient's death. In contrast, physicians unjustifiably kill patients whenever they intentionally administer a lethal dose of medication. We argue that the differential moral assessment of these two practices is based on a series of moral fictions – motivated false beliefs that erroneously characterize withdrawing life‐sustaining treatment in order to bring accepted end‐of‐life practices in line with the prevailing moral norm that doctors must never kill patients. When these moral fictions are exposed, it becomes apparent that conventional medical ethics relating to end‐of‐life decisions is radically mistaken.     

Administrative gatekeeping - a third way between unrestricted patient advocacy and bedside rationing

The inevitable need for rationing of healthcare has apparently presented the medical profession with the dilemma of choosing the lesser of two evils. Physicians appear to be obliged to adopt either an implausible version of traditional professional ethics or an equally problematic ethics of bedside rationing. The former requires unrestricted advocacy of patients but prompts distrust, moral hazard and unfairness. The latter commits physicians to rationing at the bedside; but it is bound to introduce unfair inequalities among patients and lack of political accountability towards citizens. In this paper I shall argue that this dilemma is false, since a third intermediate alternative exists. This alternative, which I term 'administrative gatekeeping', makes it possible for physicians to be involved in rationing while at the same time being genuine advocates of their patients. According to this ideal, physicians are required to follow fair rules of rationing adopted at higher organizational levels within healthcare systems. At the same time, however, they are prohibited from including considerations of cost in their clinical decisions.     

Can biology make ethics objective?

A familiar position regarding the evolution of ethics is that biology can explain the origin of morals but that in doing so it removes the possibility of their having objective justification. This position is set fourth in detail in the writings of Michael Ruse (1986, 1987, 1989, 1990a, 1990b) but it is also taken by many others, notably, Jeffrie Murphy (1982), Andrew Oldenquist (1990), and Allan Gibbard (1990), I argue the contrary view that biology provides a justification of the existence of morals which is objective in the sense of being independent of people's moral views and their particular desires and preferences. Ironically, my argument builds on the very premises which are supposed to undermine the objectivity of morals. But my argument stops short of claiming that biology can give us a basis for justifying some particular system of morals. Drawing on an analogy with social contract theory, I offer a general reason why this more ambitious project cannot be expected to succeed if the argument is pursued along the same lines. Finally, I give reasons why the possibility of objective justification for a particular morality cannot be ruled out in general on evolutionary grounds.     

From applied ethics to empirical ethics to contextual ethics

Bioethics became applied ethics when it was assimilated to moral philosophy. Because deduction is the rationality of moral philosophy, subsuming facts under moral principles to deduce conclusions about what ought to be done became the prescribed reasoning of bioethics, and bioethics became a theory comprised of moral principles. Bioethicists now realize that applied ethics is too abstract and spare to apprehend the specificity, particularity, complexity and contingency of real moral issues. Empirical ethics and contextual ethics are needed to incorporate these features into morality, not just bioethics. The relevant facts and features of problems have to be identified, investigated and framed coherently, and potential resolutions have to be constructed and assessed. Moreover, these tasks are pursued and melded within manifold contexts, for example, families, work and health care systems, as well as societal, economic, legal and political backgrounds and encompassing worldviews. This naturalist orientation and both empirical ethics and contextual ethics require judgment, but how can judgment be rational? Rationality, fortunately, is more expansive than deductive reasoning. Judgment is rational when it emanates from a rational process of deliberation, and a process of deliberation is rational when it uses the resources of non‐formal reason: observation, creative construction, formal and informal reasoning methods and systematic critical assessment. Empirical ethics and contextual ethics recognize that finite, fallible human beings live in complex, dynamic, contingent worlds, and they foster creative, critical deliberation and employ non‐formal reason to make rational moral judgments.     

Killing, letting die and moral perception

There are a number of arguments that purport to show, in general terms, that there is no difference between killing and letting die. These are used to justify active euthanasia on the basis of the reasons given for allowing patients to die. I argue that the general and abstract arguments fail to take account of the complex and particular situations which are found in the care of those with terminal illness. When in such situations, there are perceptions and intuitions available that do not easily find propositional form but lead most of those whose practice is in the care of the dying to resist active euthanasia. I make a plea for their intuitions to be heeded above the sterile voice of abstract premises and arguments by examining the completeness of the outline form of the pro-euthanasia argument. In doing so, I make use of Nussbaum's discussion of moral perception and general claims to be found in the literature of moral particularism.     

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.     

Compulsory moral bioenhancement should be covert

Some theorists argue that moral bioenhancement ought to be compulsory. I take this argument one step further, arguing that if moral bioenhancement ought to be compulsory, then its administration ought to be covert rather than overt. This is to say that it is morally preferable for compulsory moral bioenhancement to be administered without the recipients knowing that they are receiving the enhancement. My argument for this is that if moral bioenhancement ought to be compulsory, then its administration is a matter of public health, and for this reason should be governed by public health ethics. I argue that the covert administration of a compulsory moral bioenhancement program better conforms to public health ethics than does an overt compulsory program. In particular, a covert compulsory program promotes values such as liberty, utility, equality, and autonomy better than an overt program does. Thus, a covert compulsory moral bioenhancement program is morally preferable to an overt moral bioenhancement program.     

Decision making in critically ill patients with hematologic malignancy.

Hematologic neoplasms that were previously considered fatal are now potentially curable with techniques such as bone marrow transplantation. Such therapies also carry significant morbidity and mortality. With the increasing application of these therapies, a growing number of physicians are using medical decision making regarding critical care for these patients. The process by which ethical decisions are reached for these critically ill patients may be baffling because of several factors: rapidly evolving treatments, uncertain probabilities of the cure of the malignant disorder, the relatively young age of many of these patients, and the poor prognosis with critical illness. I discuss a process to reach acceptable decisions, providing a case example of the application of the process. This process is derived from the ethical principles that drive decision making in general medicine and attempts to maximize patients'' autonomy. It involves a consideration of accurate information regarding the disease process and the prognosis, a clear delineation of the goals of the medical care, and communication with patients. Appropriate, ethical, and consistent decisions regarding the critical care of patients with hematologic malignancy can be reached when these considerations are addressed.     

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.     

The Traditional Account of Ethics and Law at the End of Life—and its Discontents

For the past 30 years, the Melbourne urologist Dr Rodney Syme has quietly—and more recently, not-so-quietly—assisted terminally and permanently ill people to die. This paper draws on Syme’s recent book, A Good Death: An Argument for Voluntary Euthanasia, to identify and to reflect on some important challenges to what I outline as the traditional account of law, ethics, and end of life decisions. Among the challenges Syme makes to the traditional view is his argument that physicians’ intentions are frail and unfairly expose physicians to moral and legal censure. Secondly, Syme argues that physician-assisted dying (PAD) should be framed as a form of palliative care, not as a kind of safety-chute for when palliative care fails. Thirdly, Syme himself is a rare breed: a dissident doctor who has opened himself up for scrutiny and criticism, by reflecting publicly on his experiences at the edge of the law. Syme’s career illustrates that prohibition, just like legalization, is a social policy that carries social consequences. The paper acknowledges the variability and idiosyncratic nature of extra-legal physician-assisted dying, and argues that the best way forward is to attempt to weigh the social consequences of both policies. Advocates and opponents of PAD should recognize that both prohibition and legalization involve trade-offs and impose possible costs on patients and on society.     

ARE PREGNANT WOMEN FETAL CONTAINERS?

Purdy explores the argument that women's rights to control their bodies should be subordinated to the welfare of their fetuses. She gives examples ofinstances where women's decisions about pregnancy and childbirth have been overridden by physicians and judges. She examines the nature of the mother fetus relationship, the social context of the current conflict between maternal and fetal rights, and the extent of a woman's legally enforceable duty to her fetus. Purdy acknowledges that women may owe a reasonable duty to their fetuses to try to prevent disease or handicap. However, given the uncertainties of modern medicine, the value-laden nature of many physicians' decisions, and the lack of adequate adequate prenatal care, women should not be held responsible for situations that are due largely to society's shortcomings. Purdy concludes that it is unjust to use the law to coerce women into accepting medical advice.     

Teaching Medical Ethics to Meet the Realities of a Changing Health Care System

The changing context of medical practice—bureaucratic, political, or economic—demands that doctors have the knowledge and skills to face these new realities. Such changes impose obstacles on doctors delivering ethical care to vulnerable patient populations. Modern medical ethics education requires a focus upon the knowledge and skills necessary to close the gap between the theory and practice of ethical care. Physicians and doctors-in-training must learn to be morally sensitive to ethical dilemmas on the wards, learn how to make professionally grounded decisions with their patients and other medical providers, and develop the leadership, dedication, and courage to fulfill ethical values in the face of disincentives and bureaucratic challenges. A new core focus of medical ethics education must turn to learning how to put ethics into practice by teaching physicians to realistically negotiate the new institutional maze of 21st-century medicine.     

Who should Decide for the Unrepresented?

Unrepresented patients lack the capacity to make medical decisions for themselves, have no clear documentation of preferences for medical treatment, and have no surrogate decision maker or obvious candidate for that role. There is no consensus about who should serve as the decision maker for these patients, particularly regarding whether to continue or to limit life‐sustaining treatment. Several authors have argued that ethics committees should play this role rather than the patient's treating physician, a common current default. We argue that concerns about the adequacy of physicians as surrogates are either empirically unfounded or apply equally to ethics committees. We suggest that physicians should be the primary decision maker for the unrepresented because of their fiduciary duties toward their patients. As part of the process of fulfilling these duties, they should seek the advice of third parties such as ethic committees; but final end‐of‐life decision‐making for the unrepresented should rest with the treating physician.