One of the most pervasive and compelling issues in bioethics has to do with the host of prickly questions that arise when treatment decisions are made, not by individuals themselves, but by others on their behalf. These dilemmas come to the fore when, for example, patients have lost or are judged to suffer from diminished decisionmaking capacity, are unable to make treatment decisions themselves because they lack the necessary development to do so, or because they choose to give others the task of deciding for them.

Joann Starr, a Roman Catholic nun, and Bruce Zawacki, a burn surgeon, met 22 years ago in the Los Angeles County, University of Southern California Burn Center in the roles of a patient and her physician struggling over issues of autonomy and informed consent. After recovery, she remained a nun and has become a patient advocate and doctoral candidate in bioethics. He remained a burn surgeon and has become a bioethics teacher and author. Although they live in distant locations, they maintain their friendship and frequently discuss their shared experience. Recently they met to reflect on the events, lessons, and meanings of their original encounter.

A review of the literature on palliative care in the United Kingdom over the last fifteen years suggests that elements such as the development of the modern hospice, on the model developed by Cicely Saunders (at St. Christopher's Hospice, London), have led to major improvements in the lot of the terminally ill.

Medical ethics is a footnote to the larger problem of directing our technology to good human ends. Written large, then, medical ethics must ask five basic questions:

1)Is it even possible to direct biomedical technology to good human ends, or is the medical enterprise almost entirely technology driven?

2)If it is possible to direct biomedical technology, on what basis or norms should this direction take place?

3)How should decisionmaking in this control over biomedical technology be structured?

4)Who should be involved in the process of making those decisions, and of those involved, whose values and opinions ought to carry more weight?

5)Based on the answers to these four questions, what ought to be our concern for the future of medicine?

The emergence of new obstetrical and neonatal technologies, as well as more aggressive clinical management, has significantly improved the survival of extremely low birth weight (ELBW) infants. This development has heightened concerns about the limits of viability. ELBW infants, weighing less than 1,000 grams and no larger than the palm of one's hand, are often described as “miracles” of late twentieth century technology. Improved survivability of ELBW infants has provided opportunities for long-term follow-up. Information on their physical and emotional development contributes to developing standards of practice regarding their care.

This article is a thoughtful and well written examination of some of the complex issues that have emerged as a result of recent improvements in the treatment of extremely low birth weight (ELBW) infants, including those who weigh 500 to 600 grams or who are believed to be 23 to 24 weeks gestation. The authors argue that the 23 to 24 week gestation period is filled with ambiguity and flexibility in practice relative to active resuscitation. However, such ambiguity and flexibility is likely to prevail whatever the boundary conditions of viability happen to be. Thus moral guidelines that inform the rescue of an infant believed to be 500 to 600 grams or 23 or 24 weeks gestation are likely to be relevant whatever the boundary conditions are.

Advances in life-sustaining medical technology as applied to neonatal cases frequently present ethical concerns with a strong emotional component. Neonates delivered in the “gray area” gestation period of approximately 23–25 weeks may result in situations where various people involved in such cases may feel “held hostage” to technological imperatives. Legal decisions and standards have evolved that are discordant with the views of many clinicians most familiar with the treatment of such patients. Increasing concerns regarding such scenarios have fueled much academic and professional debate about the need for consensus about ethical limits to clinical interventions with high probability of nonbeneficial impact. While at least some clinicians and ethicists may be inching toward consensus regarding limits to such treatment, the voices of some bedside personnel, particularly neonatal intensive care unit (NICU) nurses, have been relatively muted in this debate. At least one previous survey of clinicians, which included nurses, indicated that many nurses experienced a high level of “moral distress” regarding aggressive courses of treatment for some patients. Some of this distress results from a feeling of powerlessness regarding treatment decisions, coupled with a high intensity of hands-on contact with the patients and family. Lack of authority coupled with high responsibility may itself be a recipe for a different kind of futility.

Nationwide, almost 11% of women abuse drugs during their pregnancy. In some communities, these numbers are as high as 25–30%. Drug abuse is not limited to the poor or to African Americans, but is seen among affluent and white Americans as well. It is widespread, irrespective of race or social class. Annually, nearly 375,000 infants are exposed to drugs in America. Because of the terrible suffering caused by these births, and the conflicts caregivers experience in the treatment of these infants, Trollope's quote is very apropos. Although caregivers have good motives in trying to rescue these babies and helping place them in a nurturing environment, despair about this objective is always close to the surface.

How aggressively should we pursue life-sustaining treatment of the demented patient? This question becomes increasingly important as our population ages and medical technology offers ever more life-prolongation. In Life's Dominion, Ronald Dworkin addresses the issue in the context of an Alzheimer patient who had previously declared the desire to avoid life-sustaining intervention. Dworkin argues for the primacy of what he calls precedent autonomy: “A competent person's right to autonomy requires that his past decisions about how he is to be treated if he becomes demented be respected even if they contradict the desires he has at a later point.” In 1995, the Hastings Center Report carried thoughtful rebuttals by Daniel Callahan and Rebecca Dresser. Much of Callahan's article is devoted to patients who never executed an advance directive, but he states unequivocally that such directives can be overridden, basing much of his argument on the writings of Sanford Kadish. Together, Dresser, Callahan, and Kadish define a clear position opposed to precedent autonomy.

The Institute of Medicine's report, “Approaching Death: Improving Care at the End of Life,” the American Medical Association's “Education for Physicians on End-of-Life Care” project, the Open Society Institute's “Project on Death in America,” and the “Last Acts” initiative sponsored by the Robert Wood Johnson Foundation have focused attention on improving the care of dying patients. These efforts include advance care planning and the use of written advance directives (ADs). Although previous studies have provided quantitative descriptions of patient preferences for life-sustaining treatment, including those documented in written ADs, to our knowledge open-ended written preferences have not been studied. Studies of these open-ended preferences could highlight issues with respect to quality end-of-life care. The purpose of this study was to explore the open-ended proxy, health, and personal care preferences of people with HIV as expressed in a written AD form.

These CQ Sources were compiled by Bette Anton.

Appropriate concerns about cost and unequal access to healthcare have resulted in the creation of powerful managed networks seeking to share the risks of high healthcare costs among plans, providers, and patients. Much to their credit, these managed networks have slowed the rise in healthcare spending by as much as 44% in markets with high HMO penetration. However, whether these savings will materially improve access and quality remains to be seen.

Decisions concerning use of gene therapy will probably not be made within the privacy of what was once a dyadic doctor–patient relationship. More likely, some overarching guidelines will emerge directing or limiting the practice. Debate and position-taking over the myriad scientific, social, ethical, legal, and political implications of research into and manipulation of the human genome has intensified since the U.S. government officially launched the Human Genome Project in 1988 by appropriating funds to the Department of Energy and the National Institutes of Health (NIH) for genome research. The discourse this costly research endeavor has generated in the scientific and bioethics literature and even in the popular press outlines a host of issues likely to evoke attempts at line drawing and policymaking. Many of these issues lend themselves easily to the shorthand of dualistic opposition: somatic cell therapy (insertion of genes into patients' nonreproductive cells or tissue to accomplish the work of defective or missing genes) versus germ line therapy or engineering (manipulation of a patient's reproductive [germ] cells and the undifferentiated cells of early embryos); correction of defects and disease only versus enhancement of conditions not considered defects or diseases; intervening on the basis of phenotype only (physically expressed genetic traits or symptoms) versus intervening on the basis of genotype also (the biochemical composition of an individual's genome).

Michael Stingl's sensitive paper links two debates now dominating contemporary Western societies: the debate on euthanasia and the debate on healthcare reform. The link is important for both practical and theoretical reasons. Given the rise of national expenditures for healthcare, most governments have a strong interest in cost containment. In various countries we see reduced accessibility to healthcare services and facilities, albeit for different reasons. Sometimes healthcare is largely a matter of private insurance, as in the United States; sometimes shifts are made toward rising financial copayments for the use of particular services, as seems to be the case in Canada and in many European countries; sometimes accessibility is reduced by waiting lists, characteristic of systems with socialized medicine such as in Britain and the Netherlands.

A recent issue of Cambridge Quarterly of Healthcare Ethics provides a fascinating look into the uncertainties surrounding the subject of human cloning. As Nelkin and Lindee point out, for example, the popular assumption is that this technology will lead to individual immortality. “Again and again media stories predict that cloning will allow the resurrection of the dead … life everlasting for the deserving.” This is not an attitude reserved to popular imagination, however. As John Harris noted in his contribution, for example, even the World Health Organization (WHO) “considers the use of cloning for the replication of human individuals to be ethically unacceptable.”

At the level of theoretical foundations, contemporary bioethics is to a large extent Balkanized. Without difficulty, one can find contributions from communitarians, consequentialists, and feminists, as well as those who advocate “the principle approach,” an “ethics of care,” and “narrative ethics.” The problem is not so much the wide diversity of views as the lack of agreement over the basics of medical ethics. For that reason alone, any attempt to find (or induce) some harmony among these many diverse voices is a welcome addition to the literature. Fragmentation and Consensus is such an attempt. Kuczewski argues that both communitarianism and casuistry can be understood as neo-Aristotelian approaches to ethics, and that once these views are “purged of non-Aristotelian elements” communitarianism and casuistry are found to be highly complementary. In the process of constructing his theory, Kuczewski also finds room for liberal political theory and narrative ethics. The resulting amalgam is interesting, and the project ambitious.

In Part 1 of this essay, I raised the following question: How would our care of the dying patient change if environmentally inspired theories of ethics, like deep ecology, were imported into current Western norms of patient care?

I work at a large urban medical center. Our hospital has over 1,200 beds and was built in 1805 to take care of the poor. Our patients are still poor, but now so are the hospital and the doctors. Russian doctors are paid about one-third of what truck drivers are paid. The government historically allocates no more than 3% of the budget to medicine because this is not a means of production, like manufacturing.

This section is meant to be a mutual effort. If you find an article you think should be abstracted in this section, do not be bashful—submit it for consideration to Kenneth V. Iserson care of CQ. If you do not like the editorial comments, this will give you an opportunity to respond in the letters section. Your input is desired and anticipated.