Prolonged survival with hydranencephaly: report of two patients and literature review.

Infants with hydranencephaly are presumed to have a reduced life expectancy, with a survival of several weeks to months. Rarely, patients with prolonged survival have been reported, but these infants may have had other neurologic conditions that mimicked hydranencephaly, such as massive hydrocephalus or holoprosencephaly. We report two infants with prenatally acquired hydranencephaly who survived for 66 and 24 months. We reviewed published reports to ascertain the clinical and laboratory features associated with survival of more than 6 months. This review demonstrates that prolonged survival up to 19 years can occur with hydranencephaly, even without rostral brain regions, with isoelectric electroencephalograms, and with absent-evoked potentials. Finally, the ethical aspects of these findings, as they relate to anencephaly and organ transplantation, are discussed.

On values, professionalism and nosology: an essay with late commentary on essays by DeVito and Rudnick.

The essays by Scott DeVito and Abraham Rudnick are on largely the same topics--the meanings of healthy(y), normal, disease, pathological, diagnosis, etc., and they contain compatible conclusions--that medical precepts are value-laden and less objective than some naive model of scientific objectivity would suggest. This commentary opens with a brief critique of each and ends with a more in-depth account, one complaint being how lacking in weight the analyses are. In the middle portion of this commentary, I consider the sorts of values that are present in some case studies--values that give the project much more weight. These include the values, scientific and self-serving, that professionalism provides. I show how medicine and its disease-related concepts can be thought to evolve in many ways.

Paradigms and personhood: a deepening of the dilemmas in ethics and medical ethics.

There are many calls for a definition of personhood, but also many logical and Wittgensteinian reasons to think fulfilling this is unimportant or impossible. I argue that we can consider many contexts as language-games and consider the person as the key player in each. We can then examine the attributes, presuppositions and implications of personhood in those contexts. I use law and therapeutic psychology as two examples of such contexts or language-games. Each correlates with one of the classic "theories" of ethics-deontology and consequentialism. But each is a large enough cluster to consider them as paradigms in a sense related to Thomas Kuhn's notion in The Structure of Scientific Revolutions. Showing the presuppositions about and "takes" on personhood together with the connections involved in the paradigms deepens the dilemmas we already know to be present.

Informed consent to septoplasty: an anecdote from the field.

This paper tells the story of events that led up to a septoplasty and the consequences that followed it. The patient is a medical ethicist. After scratching the inside of a nostril in 1976, he suffered with occasional bleeding and irritation for almost two decades. He tried topical treatment. As this failed, he sought help from an ENT specialist. The paper relates the conduct of the patient and others (friends in the medical field, the patient's spouse, nurses and anesthesiologists) vis-à-vis informed consent.

A commentary on 'Informed consent to septoplasty: an anecdote from the field'.

This paper is an analysis of the events recounted in 'Informed consent to septoplasty: An anecdote from the field.' As a commentary, it assesses the behavior of many agents who are parties to the story - physicians, nurses, friends of the patient, the patient's wife and the patient himself. This story is interesting for being mundane. The medical condition involved and the failures of care are not momentous. The patient's role as a medical ethicist led him to see things in particular perspective and motivated or influenced his conduct sometimes not in the smartest of ways. Several accounts of informed consent are reviewed and used as measures of what happened. The moral vision behind informed consent, the rights and duties it implies and the elements of its contents are identified. No account was fulfilled. Some of the reasons and causes for this are discussed. Many sources of information and forces acting on the situation are explored. Post-operative experiences include severe irritation and discomfort as well as severe frustration and a sense of alienation and abandonment. The case communicates a hint about what physicians do not know in order to have informed consent occur. Physicians' lack of awareness about, e.g., post-operative experience means that they will not provide what the informed aspect of informed consent requires. Patients can feel abandoned and perhaps are abandoned in a variety of ways, subtle and not so subtle. A few issues besides informed consent are discussed (the roles of wives in working at their physician-husband's front desk, the language of reassurance).

The inadequacy of role models for educating medical students in ethics with some reflections on virtue theory.

Persons concerned with medical education sometimes argued that medical students need no formal education in ethics. They contended that if admissions were restricted to persons of good character and those students were exposed to good role models, the ethics of medicine would take care of itself. However, no one seems to give much philosophic attention to the ideas of model or role model. In this essay, I undertake such an analysis and add an analysis of role. I show the weakness in relying on role models exclusively and draw implications from these for appeals to virtue theory. Furthermore, I indicate some of the problems about how virtue theory is invoked as the ethical theory that would most closely be associated to the role model rhetoric and consider some of the problems with virtue theory. Although Socrates was interested in the character of the (young) persons with whom he spoke, Socratic education is much more than what role modeling and virtue theory endorse. It-that is, philosophy-is invaluable for ethics education.

Method and methodology in medical ethics: inaugurating another new section.

This essay announces the inauguration of a section of Theoretical Medicine and invites submissions on the topic "Method and Methodology in Medical Ethics." It offers some sketches of plausible meanings of "method" and "methodology" and their relationships as these might apply to work in biomedical ethics. It suggests a broad range of issues, dilemmas or conflicts that may be addressed for help via method and/or methodology.

Philip Roth's Patrimony: narrative and ethics in a case study.

I assess the ethical content of Philip Roth's account of his father's final years with, and death from a tumor. I apply this to criticisms of the nature and content of case reports in medicine. I also draw some implications about modernism, postmodernism and narrative understandings.

How abstract is my thinking as an ethicist in clinical settings?

Answering how abstract my thinking is in practicing applied ethics in clinical settings involves clarifying the idea of abstraction. I see three categories of cases: 1) those I decide automatically, 2) those I feel oblige extra care, and 3) those that force me to abstract thinking in some sense of the word. I use a method for tracking the values at stake in such cases and use it in all three sorts of cases. In consequence, then, to issues about education or training for clinical ethics, I think one needs a method for problem solving that does not seem very abstract but that depends on analyses of some very abstract notions.

Ethics and the care of persons with Bell's palsy.

Much of the bioethics literature focuses on dilemmas physicians face involving life and death issues. We articulate and apply a method of bioethics that can help both in resolving such dilemmas and in the appreciation of many situations and conditions. We apply the method to a case of a person with Bell's palsy because such a condition does not involve life and death, has a low cure rate, involves poorly recognized value conflicts, involves several specialties with rival approaches to care and much uncertainty. We show the strengths of the method in the application, and recommend it as generally useful to organize the way one perceives cases and attempts to resolve dilemmas.

Economic incentives for ethical and courteous behavior in medicine. A proposal.

Several current and proposed structural features of medical reimbursement are intended to alter the behavior of health care providers. I propose adding a structure to make physician behavior more ethical. The structure's design would be complex, but its core would be reminiscent of how a patron tips waiters. My proposal would apply the truism that society's reward systems should foster rather than undermine social goals. This idea draws on features of medicine's social background and on a theory of behavior. It challenges the taboo against the physician's financial interests being clearly present in the doctor-patient relationship and it challenges the overly pure characterization of medical ethical dilemmas that currently dominates. Detailed sketches of necessary mechanisms, such as anonymous forms for patients to complete, are offered, and connections to the insights of George Bernard Shaw are made.

Studies in the explanation of issues in biomedical ethics: (II). On "on play[ing] god", etc.

A previous essay (Erde, 1988) tracked the influence of the major Western historical paradigm of the great chain of being through various positions taken about abortion. This essay shows the paradigm's influence on our language--especially in animating the use of "god" and phrases like "playing god". This is important given the prevalence of religious values in bioethics debates and the pervasiveness of the language. I hunt unsuccessfully for a meaning that could serve as a moral principle, and I show how these phrases are rooted in the paradigm. I conclude that all that such language can do is offer the pretense that there is a specific absolute ground for forbidding something which could otherwise be morally acceptable. But such language is nearly senseless, and worse still, it is immoral in that it cuts off reflection and debate.

Studies in the explanation of issues in biomedical ethics: the example of abortion.

The variety of general issues and particular controversies in biomedical ethics can be understood as reflecting a deeper unity than normally supposed. The principle of plenitude and the paradigm of the "chain of Being" form the tie among the phenomena. They are defined, and their presence is tracked especially through some of the ideas and language in the debate about the ethics of abortion.

On truth telling and the diagnosis of Alzheimer's disease.

Whether to inform patients that they have Alzheimer's disease can be a vexing issue. Two approaches to medical ethics may be used to address this issue: one takes a strong rights-oriented position; the other takes a best-outcome position. The interests that patients have in knowing relate to both schools of thought. The authors surveyed 224 adult patients who were waiting to see their physicians. The findings showed that over 90 percent of patients want to be told of the diagnosis. Reasons for wanting to be told included making plans for care, obtaining a second opinion, and settling family matters. No demographic markers could be used to predict who would not be told. Even though several patients indicated that reading a case description made them feel suicidal, reactions to not being told are generally negative. Following either ethical approach leads to the conclusion that patients ought to be told. Subjects' interests in whom else should be told were also recorded, raising questions of confidentiality.