Anyone who thinks contemporary American society is hopelessly contentious and lacking in shared values has probably not been paying attention to the way the popular media portray the hospice movement. Over and over, we are told such things as that “Humane care costs less than high-tech care and is what patients want and need,” that hospices are “the most effective and least expensive route to a dignified death,” that hospice personnel are “heroic,” that their “compassion and dedication seem inexhaustible,” and that “few could argue with the powerful message that it is better [for dying patients] to leave wrapped in the love of family and care givers than locked in the cold, metallic embrace of a machine.“

The restructuring of the healthcare marketplace has exerted pressure directly and indirectly on clinical ethics programs. The fiscal orientation and emphasis on efficiency, outcome measures, and cost control have made it increasingly difficult to communicate arguments in support of the existence or growth of ethics programs. In the current marketplace, arguments that rely on the claim that ethics programs protect patient rights or assist in the professional formation of practitioners often result in minimal levels of funding and preclude program growth. Where ethics programs could once sustain themselves on goodwill alone and values arguments in an expanding healthcare market they are now encountering—at least by anecdotal reports—cutbacks and even elimination. To respond to these challenges, we offer an economic model that can be used to demonstrate the “value” of an institutionally based ethics program.

“Any bad settlement,” the wise patent litigator Elmer S. Albritton once observed, “is better than a good lawsuit.” Given the notorious strain of court proceedings and the recognition that settlement does not always prove attainable, a popular movement has recently arisen in favor of “alternative dispute resolution” (or ADR). Indeed it has seemed to many who have participated as committee members, witnesses, or respondents in scientific misconduct cases that there ought to be some method of resolving such matters that is less vexing than traditional adjudication.

The critical role of surrogates—commonly if erroneously called “Informal caregivers”—has been generally ignored by clinical and bioethical literatures. While assumed to provide no more than ancillary support, these patient representatives directly or indirectly affect patient care to the extent they inhibit or facilitate both home-based care and patient decisions regarding treatment alternatives. Members of this group include relatives and neighbors who may or may not act in consort as advisors, assistants, care providers, and surrogate decisionmakers acting on the patient's behalf with members of the medical community. Not only do they often possess a critical voice strongly influencing both patient care decisions and, after discharge, home care and rehabilitation, this paper argues they do so from a perspective that is often radically different from one endorsed by medical professionals.

A competent patient has the right to refuse treatment necessary to sustain life. However, for many end-of-life decisions, we lack direct access to the wishes of a competent patient. Some treatment decisions near the end of life involve patients with severely diminished mental capacity (for example, Alzheimer's patients), some involve patients who are unable to communicate (for example, some stroke victims), and some involve patients who are simply unable or unwilling to participate in decisionmaking due to the nature or severity of their illness.

The standard argument in favor of the practice of voluntary physician-assisted death, by means of assisted suicide or active euthanasia, rests on liberal, individualistic grounds. It appeals to two moral considerations: (1) personal self-determination—the right to choose the circumstances and timing of death with medical assistance; and (2) individual well-being—relief of intolerable suffering in the face of terminal or incurable, severely debilitating illness. One of the strongest challenges to this argument has been advanced by Daniel Callahan. Callahan has vigorously attacked the practice of physician-assisted death and the goal of legalization as deep affronts to values of community: “By assuming that the relief of suffering is a goal important enough to legitimate killing as a way of achieving it, we corrupt the idea of such relief as a social goal and duty. We cease helping to bear one another's suffering, but eliminate altogether the person who suffers. We thereby jeopardize both the future of self-determination and the kind of community that furthers its members' capacity to bear one another's suffering. Why bear what can be eliminated altogether?” In another passage Callahan remarks, “For there is a deep sense in which suicide and euthanasia are likely to represent, at least in part, a failure of the community, whether that of the intimate community of family and friends, or the larger civic community, to respond to the needs of another.”

In 1961 in Japan, the son of a hospitalized man suffering from severe pain after a stroke mixed a cup of milk with insecticide and arranged for his unsuspecting mother to give this to the patient, who had requested that his son assist him in dying. The son could not endure his father's condition and killed him in order to show his love.

The current interest in and discussion of virtue ethics suggests that this approach to moral decisionmaking has several distinct advantages as applied to ethical issues in healthcare delivery. For the most part, calls to incorporate the virtues of the healthcare provider in discussions of these issues have sought to supplement rather than totally replace traditional ethical theories, such as the utilitarian focus on maximizing the best overall consequences and the Kantian concern to act on the duty of respect for persons. Including virtue-based ethics in such discussions allows for a more eclectic view of what should be considered in resolving difficult moral problems. As many critics of the purely principle-based approach have noted, real moral dilemmas are usually quite messy and are not easily susceptible to satisfactory resolution solely on the basis of abstract moral theories or principles.

A common tale of moral cacophony and euphemism on the city streets:

Each day, an owner of a small business decides, “once and for all,” how to respond to the “homeless person” panhandling for “spare change” as she makes her way to work in the morning. Today, she looks the other way and holds more tightly to her purse. Nearby, a building contractor waits impatiently for the traffic light to change as his van is approached by a small and shabby band of “street people” demanding to clean his windshield. He turns his wipers on to signal them away. Sometimes this works. At the next light, a woman carrying an infant swaddled to her torso offers a tube of three roses for a dollar. The driver smiles pleasantly, but does not stop. The businesswoman, now close to work, buys two tubes of roses and does not wait for the change from the five-dollar bill she earnestly presses into the mother's hand.

Virtue ethics attempts to identify certain commonly agreed-upon dispositions to act in certain ways, dispositions that would be accepted as ‘good’ by those affected, and to locate the goodness or badness of an act internal to the agent. Basically, virtue ethics is said to date back to Aristotle, but as Alisdair MacIntyre has pointed out, the whole idea of ‘virtue ethics’ would have been unintelligible in Greek philosophy for “a virtue (arete) was an excellence and ethics concerned excellence of character; all ethics was virtue ethics.” Virtue ethics as a method to approach problems in medical ethics is said by some to lend itself to working through cases at the bedside or, at least, is better than the conventional method of handling ethical problems. In this paper I want to explore some of the shortcomings of this approach, examine other traditional approaches, indicate some of their limitations, and suggest a different conceptualization of the approach.

In January 1995 we (Social Service Department) received a referral for an in-patient Mrs. B. Mrs. B was a 56-year-old, African-American female who had been admitted to our facility with a diagnosis of R/O cerebral vascular accident. When first seen, Mrs. B evidenced clear cognitive impairments, including slurred speech, decreased concentration and memory, and tangentiality. The history she was able to provide was sketchy, but did Include the following: Mrs. B was a recent widow, her husband having died in a nursing home from. AIDS 2 weeks prior to admission. She had been diagnosed HIV+ in 1992, when she began hemodialysis for chronic renal failure. She believed she had contracted the virus heterosexually from her husband. She denied any history of substance abuse. Mrs. B had seven adult children, none of whom were aware of her HIV diagnosis. Prior to admission, she was living alone. Prior to 1992 Mrs. B had worked as an office cleaner, and later qualified for Social Security and Medicare benefits. She had once previously been seen in our community mental health clinic for depression, and was treated at a nearby satellite dialysis facility for end-stage renal disease.

Because of the emphasis on individualism and self-governance, medical interventions and medical research in Western nations are preceded by attempts to obtain informed consent from the individual patient or potential research subject. Individual autonomy expresses our belief that persons are ends in themselves and not merely instrumentalities to achieve the goals of others. By respecting the patient or potential research subject in the context of medical decisionmaking, we acknowledge that these individuals are moral agents. Thus, individual autonomy is an important feature of morality as it is practiced in the West. However, there are at least two circumstances in which individual autonomy appears to be threatened. One is embodied in nonwestern societies that favor collective decisionmaking over that of the individual. The other is related to the need for family histories and family testing to determine the susceptibility of family members to some genetically based disease. In both cases, individual judgment appears to be made subordinate to collective judgment.

This case is another in a series intended to highlight the new questions emerging from advances in mapping the human genome and the application of genetic findings to clinical practice. The National Human Genome Research Institute, a component of the National Institutes of Health, by law is directed to designate a portion of its annual budget to furthering understanding of the ethical, legal, and social questions emerging from research on the human genome. As part of the effort, the Institute supports research by scientists and scholars around the nation with the aim of clarifying and resolving the tough ethical and research choices facing this endeavor. But recently it has launched an intramural program, which is expected to take a catalytic role in grappling with the array of issues the researchers face in carrying out investigations in human genetics.