The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, whilst (...) many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate. (shrink)

ABSTRACT In keeping with the pre‐eminent status accorded autonomy within Australia, Europe, and the United States, medical practice requires that patients authorize do‐not‐resuscitate (DNR) orders, intended to countermand the default practice in hospitals of instituting cardiopulmonary‐resuscitation (CPR) on all patients experiencing cardio‐pulmonary arrest. As patients typically do not make these decisions proactively, however, family members are often asked to act as surrogate decision‐makers and decide on the patient's behalf. Although the appropriateness of patients or their families having to decide about (...) the provision of CPR has been challenged, there has been little examination of how patients and their families talk about and negotiate such decisions, particularly in the context of the patient's imminent death. In this article, part of a larger study analysing interviews with 28 patients (13 female) with cancer within weeks of their death, and 20 others (predominantly family) attending, we argue that a common assumption underpinning participants' talk about the DNR decision (i.e. forgoing CPR) is that it requires a choice between life and death. Using illustrative examples, we demonstrate that in making decisions about CPR, patients and their families are implicitly required to make moral judgements about the value of the patient's life, including their relationships with significant others. We identify some implications of these empirical observations for the development of ethically appropriate policies and practices regarding patient autonomy and surrogacy at the end of life. (shrink)

Ethicists differ considerably in their reasons for using empirical data. This paper presents a brief overview of four traditional approaches to the use of empirical data: “the prescriptive applied ethicists,” “the theorists,” “the critical applied ethicists,” and “the particularists.” The main aim of this paper is to introduce a fifth approach of more recent date (i.e. “integrated empirical ethics”) and to offer some methodological directives for research in integrated empirical ethics. All five approaches are presented in a table for heuristic (...) purposes. The table consists of eight columns: “view on distinction descriptive-prescriptive sciences,” “location of moral authority,” “central goal(s),” “types of normativity,” “use of empirical data,” “method,” “interaction empirical data and moral theory,” and “cooperation with descriptive sciences.” Ethicists can use the table in order to identify their own approach. Reflection on these issues prior to starting research in empirical ethics should lead to harmonization of the different scientific disciplines and effective planning of the final research design. Integrated empirical ethics (IEE) refers to studies in which ethicists and descriptive scientists cooperate together continuously and intensively. Both disciplines try to integrate moral theory and empirical data in order to reach a normative conclusion with respect to a specific social practice. IEE is not wholly prescriptive or wholly descriptive since IEE assumes an interdepence between facts and values and between the empirical and the normative. The paper ends with three suggestions for consideration on some of the future challenges of integrated empirical ethics. (shrink)

In medical ethics, business ethics, and some branches of political philosophy (multi-culturalism, issues of just allocation, and equitable distribution) the literature increasingly combines insights from ethics and the social sciences. Some authors in medical ethics even speak of a new phase in the history of ethics, hailing "empirical ethics" as a logical next step in the development of practical ethics after the turn to "applied ethics." The name empirical ethics is ill-chosen because of its associations with "descriptive ethics." Unlike descriptive (...) ethics, however, empirical ethics aims to be both descriptive and normative. The first question on which I focus is what kind of empirical research is used by empirical ethics and for which purposes. I argue that the ultimate aim of all empirical ethics is to improve the context-sensitivity of ethics. The second question is whether empirical ethics is essentially connected with specific positions in meta-ethics. I show that in some kinds of meta-ethical theories, which I categorize as broad contextualist theories, there is an intrinsic need for connecting normative ethics with empirical social research. But context-sensitivity is a goal that can be aimed for from any meta-ethical position. (shrink)

One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about (...) professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice. (shrink)

This paper challenges the traditional assumption that descriptive and prescriptive sciences are essentially distinct by presenting a study on the implicit normativity of the production and presentation of biomedical scientific facts within evidence-based medicine. This interdisciplinary study serves as an illustration of the potential worth of the concept of implicit normativity for bioethics in general and for integrated empirical ethics research in particular. It demonstrates how both the production and presentation of scientific information in an evidence-based decision-support contain implicit presuppositions (...) and values, which pre-structure the moral environment of the clinical process of decision-making. As a consequence, the evidence-based decision support did not only support the clinical decision-making process; it also transformed it in a morally significant way. This phenomenon undermines the assumption within much of the literature on patient autonomy that information disclosure is a conditional requirement before patient autonomy even starts; patient autonomy is already influenced during the production and presentation of information. These results imply an increased responsibility of those who produce and present evidence-based facts(i.e. scientists in general and physicians in particular). The insights of this study not only involve a different focus on both theory and practice of patient autonomy and informed consent, but they also call for a broader scope of morality than does traditional empirical research in bioethics. The concept of implicit normativity within integrated empirical ethics research calls for a strong cooperation between bioethicists and descriptive scientists, i.e., a cooperation that goes beyond the discipline-specific epistemic values and that takes place during all phases of the research process. (shrink)

The main measure of quality of life is well-being. The aim of this article is to compare insights about well-being from contemporary philosophy with the practice-related opinions of palliative care professionals. In the first part of the paper two philosophical theories on well-being are introduced: Sumner’s theory of authentic happiness and Griffin’s theory of prudential perfectionism. The second part presents opinions derived from interviews with 19 professional palliative caregivers. Both the well-being of patients and the well-being of the carers themselves (...) are considered in this empirical exploration. In the third part the attention shifts from the description of “well-being” to prescriptions for the promotion of well-being. Our interview data are analysed in light of the theories of Sumner and Griffin for clues to the promotion of “well-being.” The analysis (1) underscores the subject-relativity of well-being, (2) points out that values that are considered important in every life still seem to be relevant (at least in palliative care practice), and (3) shows the importance of living a certain sort of life when aiming to enhance dying patients’ well-being. (shrink)