Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...) of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines the value of advance (...) directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

Recent studies indicate that patients who are diagnosed with vegetative states may retain more awareness than their clinical assessments suggest. Disorders of consciousness traditionally have been diagnosed on the basis of outwardly observable behaviors alone, but new functional imaging studies have shown surprising levels of brain activity in some patients, indicating that even higher-level cognitive functions like language processing and visual imagery may be preserved. For example, one recently developed method purports to detect voluntary mental imagery solely on the basis (...) of neural response patterns observed with functional magnetic resonance imaging. This line of research has already led to some widely reported cases of patients who were discovered to have more brain activity than expected. In November 2009, Rom Houben, a Belgian man who was thought to be in a coma for 23 years, was diagnosed with locked-in syndrome through the use of neuroimaging; however, that assessment was later overturned by further testing. (shrink)

Purpose of review This review considers the literature on ethical and conceptual issues in eating disorders from the last 18 months. Some reference to earlier work is necessary in order to provide context for the recent findings from research that is ongoing. -/- Recent findings Empirical ethics research on anorexia nervosa includes novel ethical and conceptual findings on the role of authenticity and personal identity in individuals’ reports of their experience, as well as new evidence on the role of affective (...) states and values in decision making at later stages of the illness. Evidence points to the hypothesis that anorexia nervosa may be a distinct affective syndrome that organizes feelings and emotions in accordance with a fixed idea. -/- Summary There has been impressive progress in empirical ethics research on anorexia nervosa, with important implications for ethical and conceptual issues that surround decision-making capacity and our understanding of the illness. (shrink)

This paper critically engages ethical issues in the allocation of novel, and potentially costly, health care resources to patients with disorders of consciousness. First, we review potential benefits of novel health care resources for patients and their families and outline preliminary considerations to address concerns about cost. We then address two problems regarding the allocation of health care resources to patients with disorders of consciousness: (1) the problem of uncertain moral status; and (2) the problem of accurately measuring the welfare (...) burdens these resources would relieve. We conclude by suggesting that opportunity-based frameworks might complement standard approaches for justifying resources allocation to patients with disorders of consciousness. (shrink)

This article provides an ethical analysis of the U.S. practice guideline update on disorders of consciousness. Our analysis focuses on the guideline’s recommendations regarding the use of investigational neuroimaging methods to assess brain‐injured patients. Complex and multifaceted ethical issues have emerged because these methods alter the clinical understanding of consciousness. We address issues of false hope, patient suffering, and cost. We argue that, in spite of these concerns, there is significant benefit to using neuroimaging to assess brain‐injured patients in most (...) cases. (shrink)

This paper explores the ethical and conceptual implications of the findings from an empirical study (reported elsewhere) of decision-making capacity in anorexia nervosa. In the study, ten female patients aged thirteen to twenty-one years with a diagnosis of anorexia nervosa, and eight sets of parents, took part in semistructured interviews. The purpose of the interviews was to identify aspects of thinking that might be relevant to the issue of competence to refuse treatment. All the patient-participants were also tested using the (...) MacArthur Competence Assessment Tool—Treatment test of competence. This is a formalized, structured, interviewer-administered test of competence, which is a widely accepted clinical tool for determining capacity. The young women also completed five brief, self-administered questionnaires to assess their levels of psychopathology. The issues identified from the interviews are described under two headings: difficulties with thought processing and changes in values. The results suggest that competence to refuse treatment may be compromised in people with anorexia nervosa in ways that are not captured by traditional legal approaches. (shrink)

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires time to mature, there is strong reason to (...) believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

Liberalism welcomes diversity in substantive ideas of the good but not in the process whereby these ideas are formed. Ideas of the good acquire weight on the presumption that each is a person's own, formed independently. But people differ in their capacities to conceptualize. Some, appropriately characterized as cerebral, are proficient in and profoundly involved with conceptualizing. Others, labeled cognitively disabled, range from individuals with mild limitations to those so unable to express themselves that we cannot be sure whether their (...) behavior is mediated by concepts at all. Constricted cognitive capacities have been thought to prevent participation in the prescribed process for forming personalized ideas of the good. So liberal theory, when formulating principles and practices of justice, often disregards cognitively disabled peoples' perspectives. We put aside metaphysically driven notions about personhood and show how interpersonal processes of “prosthetic” thinking (different from surrogacy) can satisfy liberalism's standards, positioning cognitively disabled individuals as fully participating subjects of justice. (shrink)

:In this paper, the author argues that Joseph Fins’ mosaic decisionmaking model for brain-injured patients is untenable. He supports this claim by identifying three problems with mosaic decisionmaking. First, that it is unclear whether a mosaic is a conceptually adequate metaphor for a decisionmaking process that is intended to promote patient autonomy. Second, that the proposed legal framework for mosaic decisionmaking is inappropriate. Third, that it is unclear how we ought to select patients for participation in mosaic decisionmaking.

Abstract:The ethical principle of autonomy requires physicians to respect patient autonomy when present, and to protect the patient who lacks autonomy. Fulfilling this ethical obligation when a patient has a communication impairment presents considerable challenges. Standard methods for evaluating decision-making capacity require a semistructured interview. Some patients with communication impairments are unable to engage in a semistructured interview and are at risk of the wrongful loss of autonomy. In this article, we present a general strategy for assessing decision-making capacity in (...) patients with communication impairments. We derive this strategy by reflecting on a particular case. The strategy involves three steps: (1) determining the reliability of communication, (2) widening the bandwidth of communication, and (3) using compensatory measures of decision-making capacity. We argue that this strategy may be useful for assessing decision-making capacity and preserving autonomy in some patients with communication impairments. (shrink)