In this article some of the presuppositions that underly the current ideas about decision making capacity, autonomy and independence are critically examined. The focus is on chronic disorders, especially on chronic physical disorders. First, it is argued that the concepts of decision making competence and autonomy, as they are usually applied to the problem of legal (in)competence in the mentally ill, need to be modified and adapted to the situation of the chronically (physically) ill. Second, it is argued that autonomy (...) and dependence must not be considered as two mutually exclusive categories. It is suggested that decision making may take on the form of a more or less conscious decision not to be involved in making all kinds of explicit and deliberate decisions. Elaborating on Agich's distinction between ideal and actual autonomy, the concept of Socratic autonomy is introduced. (shrink)

Religious traditions can be drawn on in a number of ways to illuminate discussions of the moral standing of animals and the ethical use of animals in scientific research. I begin with some general comments about relevant points in the history of major religions. I then briefly describe American civil religion, including the cult of health, and its relation to scientific research. Finally, I offer a critique of American civil religion from a Christian perspective.

Jeffrey Bishop’s The Anticipatory Corpse exposes a functional metaphysics at the root of contemporary medical practice that gives rise to inhumane medicine, especially at the end of life. His critique of medicine argues for alternative spaces and practices in which the communal significance of the body, its telos, can be restored and the meaning of a “good death” enriched. This essay develops an alternative epistemology of the body, drawing from Christian theological accounts of the communal or Eucharistic body and linking (...) liturgical practices to the cultivation of solidarity. It argues for an epistemology of the body that makes visible the invisible bodies at medicine’s margins and illumines the disparate worlds of health care globally. (shrink)

In the clinical practice of palliative medicine, recommended communication models fail to approximate the truth of suffering associated with an impending death. I provide evidence from patients' stories and empiric research alike to support this observation. Rather than attributing this deficiency to inadequate training or communication skills, I examine the epistemological premises of the biomedical language governing the patient-physician communication. I demonstrate that the contemporary biomedicine faces a fundamental aporetic occlusion in attempting to examine death. This review asserts that the (...) occlusion defines, rather than simply complicating, palliative care. Given the defining place of aporia in the care for the dying, I suggest that this finding shape the clinicians' responses to the needs of patients in clinical care and in designing palliative research. Lastly, I briefly signal that a genuinely apophatic voice construing the occlusion as a mystery rather than an aporia may be superior to the present communication and empathy models. (shrink)

Disputes about theory in bioethics almost invariablyrevolve around different understandings of morality or practicalreasoning; I here suggest that the field would do well to becomemore explicitly contentious about knowledge, and start the taskof putting together a clinical epistemology. By way of providingsome motivation for such a discussion, I consider two cases ofresistance to shifts in clinical practice that are, by and large,not ethically controversial, highlighting how differentconceptions of epistemic authority may contribute to clinicians'unwillingness to adopt these changes, and sketching out (...) someinitial suggestions for epistemic analysis of clinical practice. (shrink)

Our response to death may differ depending on the patient’s age. We may feel that death is a sad, but acceptable event in an elderly patient, yet feel that death in a very young patient is somehow unfair. This paper explores whether there is any ethical basis for our different responses. It examines in particular whether a patient’s age should be relevant to the determination that an intervention is medically futile. It also considers the responsibilities of health professionals and the (...) rights of family members in situations where an interventions is clearly futile. (shrink)

This article summarizes some of the results of the BIOMED II project “Basic Ethical Principles in European Bioethics and Biolaw” connected to a research project of the Danish Research Councils “Bioethics and Law”. The BIOMED project was based on cooperation between 22 partners in most EU countries. The aim of the project was to identify the ethical principles of respect for autonomy, dignity, integrity and vulnerability as four important ideas or values for a European bioethics and biolaw. The research concluded (...) that the basic ethical principles cannot be understood as universal everlasting ideas or transcendental truths but they rather function reflective guidelines and important values in European culture. The method of the research was conceptual, philosophical analysis of the cultural background of the four values or normative ideas that people use and find important in their existence. Moreover, this was combined with analysis of empirical legal material and policy documents. Also, a number of qualitative interviews with relevant experts were carried out. Another important result of the BIOMED project was the partner's Policy Proposals to the European Commission, the Barcelona Declaration, unique as a philosophical and political agreement between experts in bioethics and biolaw from many different countries. The Policy Proposals are reprinted here at the end of the article. (shrink)

In advanced technological societies there is growing concern about the prospect of protracted deaths marked by incapacitation, intolerable pain and indignity, and invasion by machines and tubing. Life prolongation for critically ill cancer patients in the United States, for example, literally costs a fortune for very little benefit, typically from $82,845 to $189,339 for an additional year of life. Those who return home after major interventions live on average only 3 more months; the others live out their days in a (...) hospital intensive care unit. (shrink)

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as a (...) resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization, hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life. (shrink)

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as a (...) resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization, hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life. (shrink)

Complementary and alternative medicines (CAM) have become increasingly popular over recent decades. Within bioethics CAM has so far mostly stimulated discussions around their level of scientific evidence, or along the standard concerns of bioethics. To gain an understanding as to why CAM is so successful and what the CAM success means for health care ethics, this paper explores empirical research studies on users of CAM and the reasons for their choice. It emerges that there is a close connection to fundamental (...) principles of medical ethics. The studies also highlight that CAM’s holistic ontology of health and illness has an empowering effect on people in caring for their health, and on an even deeper level, safeguards against biomedicine’s reducing image of oneself as biological body-machine. The question is raised what lessons bioethics should draw from this emancipatory social movement for its own relationship with biomedicine. (shrink)

A response to a critique by Roger W. Hunt of my views on the eventual likely need to use age as a standard for the allocation of expensive, high-technology, life-extending medical care for the elderly. The response encompasses three elements: 1. that while the elderly have a substantial claim to publicly-provided health care, it cannot be an unlimited claim; 2. that a health care system which provided a decent, coherent set of medical and social services for the elderly would be (...) sufficient, even if some limits had to be set; and 3. allocation and rationing decisions should not be made by individual doctors at the bedside but by regional or national policy. (shrink)

A scientist at Edinburgh University announced in 1994 that he had removed ovaries from, mouse fetuses and transplanted them, to adult mice. The ovaries released eggs, and conceptions occurred. Although this was not the first such attempt with mice, the study attracted attention because the researcher suggested, that fetal to adult ovarian transplants were a theoretical possibility for humans. If aborted, fetuses were used, as egg sources in assisted conception, a new entity would arise: the never-born genetic mother. Using eggs (...) from aborted fetuses for conception would lead to quixotic and novel family ties. Its use would echo surrogate gestational motherhood, in which a child has both a genetic mother who contributed her egg and a gestational mother who contributed her uterus for gestation and childbirth. With fetal egg use, however, the child's genetic mother would be a never-born fetus without sentience or known, physiology. (shrink)

As I write, I hear that Dr. Jack Kevorluan has delivered another victim to the emergency room of his local Michigan hospital. Why do physicians and terminally ill patients feel we need to change the law with respect to assisted suicide when a rogue pathologist, who has been stripped of his medical license, is allowed to pursue his appetite for providing his clients with inhalation treatments of carbon monoxide gas? If no court will convict this outlaw, what makes the physicians (...) and patients who brought Compassion in Dying v. State of Washington and Quill v. Vacco fear that any court would ever convict a licensed physician of assisting in a suicide when he/she writes one of her established patients a prescription for a short-acting barbiturate? Moreover, it is not even clear that laws against assisted suicide in most jurisdictions were ever intended to apply to the actions of licensed physicians. Nonetheless, the plaintiffs in the Second and Ninth Circuit Courts of Appeals were clearly seeking some kind of redress, some kind of protection from potential legal claims they feared might be made against them. (shrink)

As I write, I hear that Dr. Jack Kevorluan has delivered another victim to the emergency room of his local Michigan hospital. Why do physicians and terminally ill patients feel we need to change the law with respect to assisted suicide when a rogue pathologist, who has been stripped of his medical license, is allowed to pursue his appetite for providing his clients with inhalation treatments of carbon monoxide gas? If no court will convict this outlaw, what makes the physicians (...) and patients who brought Compassion in Dying v. State of Washington and Quill v. Vacco fear that any court would ever convict a licensed physician of assisting in a suicide when he/she writes one of her established patients a prescription for a short-acting barbiturate? Moreover, it is not even clear that laws against assisted suicide in most jurisdictions were ever intended to apply to the actions of licensed physicians. Nonetheless, the plaintiffs in the Second and Ninth Circuit Courts of Appeals were clearly seeking some kind of redress, some kind of protection from potential legal claims they feared might be made against them. (shrink)

Dr Gillian Craig (1) has argued that palliative medicine services have tended to adopt a policy of sedation without hydration, which under certain circumstances may be medically inappropriate, causative of death and distressing to family and friends. We welcome this opportunity to defend, with an important modification, the approach we proposed without substantive background argument in our original article (2). We maintain that slowing and eventual cessation of oral intake is a normal part of a natural dying process, that artificial (...) hydration and alimentation (AHA) are not justified unless thirst or hunger are present and cannot be relieved by other means, but food and fluids for (natural) oral consumption should never be 'withdrawn'. The intention of this practice is not to alter the timing of an inevitable death, and sedation is not used, as has been alleged, to mask the effects of dehydration or starvation. The artificial provision of hydration and alimentation is now widely accepted as medical treatment. We believe that arguments that it is not have led to confusion as to whether or not non-provision or withdrawal of AHA constitutes a cause of death in law. Arguments that it is such a cause appear to be tenuously based on an extraordinary/ordinary categorisation of treatments by Kelly (3) which has subsequently been interpreted as prescriptive in a way quite inconsistent with the Catholic moral theological tradition from which the distinction is derived. The focus of ethical discourse on decisions at the end of life should be shifted to an analysis of care, needs, proportionality of medical interventions, and processes of communication. (shrink)