Challenges to clinical judgment and the expectations of patients. In a previous article in Generations, Christine Cassel (1992) explored ethical issues in aging research, especially concerning alteration of the basic biological mechanisms of aging to enhance health, functional status, and the quality of life of older people. Cassel raised important questions about access to new forms of treatment that might result from such research and the implications of such research for the global population problem. Since 1992, the science and clinical application of genetics have begun to transform medicine and the other healthcare professions in even more far-reaching ways than those Cassel identified. It is not too much to say that a paradigm shift appears to be occurring-clearly in the basic sciences of medicine and increasingly in clinical medicine and the other health-- care professions. In an admitted oversimplification, it can be said that the older paradigm, the infectious disease model, portrayed disease as involving the invasion of the body by external entities, microbes, resulting in pathology (Engelhardt and Wildes, 1995). The purpose of clinical intervention was to kill these microbes, to return the patient to a state of health. The new paradigm, molecular medicine, portrays health and disease as the functions of interactions between genes and the environment. Environment means everything other than genes. The focus is on genes, first identifying them and their roles in health and disease and then in manipulating them or their immediate products to diagnose, treat, and prevent disease. The purpose of this paper is to identify and consider ethical issues in genetics and aging, that is, in geriatric molecular medicine. We begin with an account of basic terms and concepts in ethics. Using these terms and concepts, we will consider, first, some general issues in molecular medicine and then turn to two more specific issues-genetic testing for disposition to disease and genetic treatment. BASIC TERMS AND CONCEPTS Ethics has been practiced as a literature tradition in world philosophy for centuries (Kahn et al., 1992). Morality encompasses people's beliefs, attitudes, and norms related to human behavior and character. Morality springs from many sources in contemporary societies, particularly in multicultural societies like the United States. As an intellectual tradition, ethics in Western philosophical thought has its origins in the recognition that morality can be improved by disciplined reflection and action based on such reflection. Ethics, as the disciplined study of morality, asks two general questions: I. What ought to be the behavior of individuals toward each other, of institutions toward each other, of institutions toward individuals, and of individuals toward institutions? That is, what behavior ought to shape our moral lives and the moral lives of institutions, so that we and our institutions act better and therefore improve the human condition? 2. What ought to be the virtues in our moral lives, those traits or habits of character that dispose us as a matter of routine to discern our obligations and to act on them routinely? That is, what virtues ought to shape our moral lives, so that we improve our characters and therefore the human condition? The intellectual discipline of ethics requires those who reason about what morality ought to be to reach only those conclusions supported by argument. Appeals to gut feelings; various forms of authority, the superiority of one's own or one's institution's policies and practices, and other strategies of assertion without the benefit of argument have no place in ethics. Ethical justification means that one has followed the intellectual discipline of ethics by first getting clear about relevant concepts and then making arguments. An ethically justified approach to a morally controversial topic therefore requires both conceptual analysis and argument. …

The relationship between doctor and patient as it influences decision making. Mrs. C was a 69year-old woman with a ten-year history of systemic lupus erythematosus. She suffered from severe osteoporosis and muscle wasting as a result of long-term corticosteroid therapy. In spite of profound weakness, deconditioning, joint and skin pain, and multiple osteoporotic fractures, Mrs. C continued to go to work daily at her business, though she spent increasing portions of her work day resting on a couch in the offce. She lived with her husband of forty-five years and had three adult children. Mrs. C was referred to Dr L, an internist with expertise in palliative care, for assistance in controlling her pain sv mptoms. At the initial visit, in an effort to convey the nature of her illness to the new doctor Mrs. C showed Dr. L several notebooks filled with detailed notes about the course of her illness. Dr. L prescribed several pharmacologic agents for treatment of pain,fatigue, and diminished nutritional status, with some success in terms of lessened pain and improved energy levels. In the final year of her life, as her functional capacity progressively narrowed, Mrs. C began to speak to Dr L about wanting access to assistance with the timing of her death. When asked why she wanted to do this, she responded that her life was becoming too burdensome, that needing help from others for the simplest activities was unacceptable to her, and that the inability to swallow, or to move without exhaustion and discomfort was becoming unbearable. In further discussion about her life, she described her childhood. She had been adopted from an orphanage at the age of years. Dependency for bathing and using the toilet now evoked the terror; shame, and loneliness of the orphanage for her, greatly increasing the suffering associated with her progressive decline in functional capacity. Thegastrostomy tube that she had reluctantly agreed to when her weight loss became severe was causing severe pain and distress. Though Dr L offered the option of removing the tube, Mrs. C was also distressed by her marked weight loss and opted to maintain the tube at a lower feeding rate rather than remove it at that juncture. She could no longer sit up to read or watch television and was too weak to write. Getting to the bathroom was a major ordeal. She had been a passionate gardener but could no longer participate in any of her hobbies. She expressed concern about the burden that her care posed for her husband, although there were no financial problems affecting her care. Finally, she said simply, ''m exhausted and I've had enough. Subsequently, she became too weak toget into the office and began to spend her days in bed, arising only togo to the bathroom. Dr L responded by asking her permission to obtain a psychiatric consultation to help in the evaluation of depression. He initiated treatment with a psychostimulant, as well as an antidepressant. EDcisting doses of morphine, begun fm-pain and breathing difficulty, were increased in an effort to relieve her feelings of total body aching. To be sure that all possible treatments for her vascular disease had been tried, Dr L encouraged her to seek another opinion at another center She reluctantly agreed, saying to her husband that she was just doing it out of concern for the physician. The new rheumatologist suggested intermittent high-dose steroid infusins in the hospital. Having had long and unhappy experience with hospitals, Mrs. C refused this t ment. When Dr L encouraged her saying that it was worth a try, she agreed on the condition that if the treatment failed and she continued to deteriorate further, she could expect help in committing suicide. Dr L sought a second psychiatric opinion at this point. After lengthy consultations, both psychiatrists agreed that the patient was not clinically depressed. The patient remained adamant in her refusal to enter the hospital for treatment in the absence of a commitmntt flm her physician for an escape route, as she called the prescription for the barbiturates recommended by Derek Humphrey's (1991) book Final Exit Mrs. …

What is the next step? Law is a collection of tools of limited utility. --Roger B. Dworkin, Limits With the best of intentions, and some measure of success, advocacy to improve end-of-life care and decision making over the past twenty-five years has frequently turned to the law as a source of protection and procedural innovation. Through courts of law and congressional hearings, with legislation and regulation, there has been a deliberate strategy to use the legal system to improve the lot of patients at the end of life-a strategy with measurable gains and some serious limitations. Through this course, we have clearly established a strong array of patients' at the end of life-the to be self-determining, to refuse unwanted life-prolonging interventions, and to establish decisional processes and protocols should the patient lose decision-making capacity We have never established a right to die per se (which suggests an unfettered to end one's life completely on one's own terms), but we have established clear limitations on the ability of healthcare providers or the state to impose undesired life-prolonging interventions against the wishes of the patient or patient's authorized surrogate decision maker. The strength of these efforts lies primarily in their articulation of procedures for decision making that are respectful of patient autonomy and anticipatory of the all too common circumstance in which patients lack decisional capacity and thus must have difficult decisions about end-of-life care made for them. In contrast to this strong and steady articulation of negative rights at the end of life, more recent advocates for dying patients have focused on using legal mechanisms such as courts of law and legislative processes to try to establish and articulate and responsibilities regarding physician aid in a patient's suiide. Rather than asking for patients to be free of unwanted interventions, these efforts have requested legal support for positive assistance at the end of life-assistance in purposefully bringing an end to life through the use of medical interventions. To date, these efforts have yielded ambiguous results. Only Oregon has successfully utilized the electoral process to articulate a limited legal to physician-assisted suicide (Haley and Lee, I998). Furthermore, the Supreme Court has determined that at this time, there is no constitutional violation if a state's criminal laws prohibit assisted suicide (Washington v. Glucksburg, I997, and Vacco v. Quill, I997). At a minimum, however, these efforts have succeeded in arousing public interest and inquiry into the suffering endured by patients and their families when serious or terminal illness becomes unbearably burdensome. This outcome may be more valuable than any articulation of a theoretical legal right. What we have not done, however, and what is likely beyond the reach of the law, is to ensure that all dying patients and their families receive competent, compassionate care at the end of life, no matter what the care setting or disease process. Being left alone and free of machines does not quite equate with receiving quality, dignified care at the end of life. It could be said that provision of suicide assistance says more about our failure to make palliative care readily accessible than it does about our compassion for those who are suffering. In essence, then, our efforts and successes in the legal arena have had more to do with decision protocols and processes, documents and directives, than with the substantive clinical aspects of quality care at the end of life. Having a document that articulates your wishes to refuse life-prolonging interventions is good-but having a doctor who effectively communicates with you and compassionately provides you with quality palliative care along the continuum of illness is even better. Perhaps it is time, then, to consider whether looking to the law as a strategy for improving end-of-life care has reached its limit. …

In multicultural America, members of most ethnic groups manage to live lives of peaceful coexistence. Day-to-day encounters with members of other groups often center on relatively superficial concerns. However, as elders approach the end of their lives, they are more likely to become dependent on people of backgrounds different from their own, and where disagreements arise, a variety of constraints may prevent elders from returning to the more familiar territory of their particular subcultures. Elders depend on the technical expertise of the healthcare system. Adequate support may not exist within their own subculture, and economic constraints may force them to receive care within institutions whose values they do not necessarily share. In fact, disagreements between elders and healthcare workers often relate to deeply held beliefs and values. Decisions related to end-of-life care often must address valueladen questions such as the following: Who decides what medical care is appropriate if the patient is unable to do so? Is tube feeding routine nourishment or a medical intervention? And even, When is a person dead or alive? (WESTERN) MEDICAL ETHICS In considering such questions, those of us working in healthcare have often turned to the field of medical ethics, which provides a philosophical framework for examining issues. Beyond this, it can be argued that in the United States, medical ethics has given rise to its own subculture, consisting of ethicists, ethics committees, policies and position papers, and even laws promulgated by ethicists. Medical ethics has created its own movement and, undoubtedly, much good has arisen from it. However, it is the product of Western, largely Northern European, cultural influences (Marshall, 1992; Koenig, I997), and as such, is unavoidably bound to the perspectives of that culture. While this observation does not nullify the value of (Western) medical ethics in addressing problems, it does suggest that the effectiveness of such ethics may be limited in the face of issues that are closely linked to different cultural perspectives. Let us consider a case in point: making decisions by use of an advance directive. The problem of how to make difficult medical decisions for a patient who lacks decisional capacity is a vexing one. Use of an advance directive attempts to honor an incapacitated person's wishes and values as expressed when that person was able to think and communicate dearly. Advance directives vary in format but usually address two issues: who decides, when the individual is no longer able to do so, and what should be decided, based on that individual's previously expressed preferences. Advance-directive decision making stresses two principles: autonomy and surrogate decision making. The importance given to autonomy reflects the great value ascribed to self-determination and individualism in Western society. Autonomy as it relates to a patient who lacks the ability to think clearly and is dependent on others is an interesting concept. One could reasonably ask, What does it mean to be autonomous if one is in a coma and highly dependent on others? Medical ethics answers with the principle of substituted judgment. Substituted judgment means that another person, either the next of kin or someone else duly appointed becomes the surroage decision maker and is asked to make a particular medical decision for a patient who is currently unable to do so-acting as if he or she were the patient when that person was able to think clearly. The surrogate decision maker is thus asked to represent the autonomous wishes of the previously clearthinking patient. Yet while such tools as advance directives may be widely accepted in the medical profession-and certainly among medical ethiciststheir usefulness is limited by the extent to which patients share the values on which they are based. Certainly not every culture places great importance on individualism and self-determination-or autonomy. …

In an insular and unchanging society, there might be no need for much ethical reflection. Perhaps we would each be taught our duties and the punishments for violating them, and we, in turn, would teach them to those who followed us. But the idea of being genuinely unsure of our moral obligations would probably be inconceivable. American society, of course, is anything but insular and unchanging. The ethnic and cultural demography of our people is in flux. Our technology, including the technology of healthcare, is in flux. And our social structures and social relationships are in flux. Homecare and home services constitute an area of healthcare that, though perhaps lacking in high drama, represents vast change in both the technology of healthcare and the social structures by which such care is delivered. This change has greatly extended the possibility for living at home, but has brought no small measure of moral confusion. How the ethics of rendering care in someone's own home differ from the ethics of care in a contained institution? What moral rights providers of homecare services have? What is the moral texture of the relationships between recipient of care, family members, and professional service providers? Anyone who has worked in the field knows that these questions are quite difficult to answer. Indeed, it is largely because of such flux and its resulting moral confusion that the bioethics revolution of the last quarter of this century happened. Confronted by dramatic changes in medical technology, especially noticed in the acute care setting, and changes in our social notion of individual decision-making rights, healthcare professionals turned to philosophers for help. And moral philosophers, captivated by the unfolding drama of life-anddeath choices in the high-technology hospital, willingly responded. Accordingly, this early foray into healthcare ethics focused almost exclusively upon the ethical dynamic of the patient confronted with bewildering life-and-death choices in the acutecare setting. What emerged was an ethic that above all emphasized respect for individual autonomy, one of those mythic values of American culture (e.g., Beauchamp and Childress, I973). Soon, leading acute-care institutions were expected to have ethics policies about such things as resuscitation and pulling the plug; and they were expected to have ethics committees to implement such policies and be the protectors of patients' rights. Eventually, people began to realize that healthcare was delivered not only in the acutecare setting, but also in the long-term-care institution, so long-term-care ethics was born. The first generation of long-term-care ethics pretty much borrowed directly from the acute care model. Nursing homes were soon expected to have ethics committees and ethics policies on do not resuscitate orders and the like. Some early work tried to argue that ethics in long-term care might have a different complexion. But it was without doubt the anthology Everyday Ethics: Resolving Dilemmas in Nursing Home Life, edited by Rosalie Kane and Arthur Caplan (1990), that shook things up. Several key contributed chapters engaged in the watershed process of actually asking nursing home residents what they perceived to be the most significant moral problems. To the surprise of many academics, what nursing home residents themselves considered to be of greatest moral importance was quite different from the moral questions about acute care that had pervaded the first generation of nursing home ethics as conceived in academic institutions. Still, this second generation of nursing home ethics was born and, though closer to the ground;' it continued to work from a model of healthcare ethics that lent preeminence to individual autonomy. It took a third generation of nursing home ethics to begin to explore moral values beyond autonomy, values that had more to say in the face of congregate living, limited resources, and dementia (e. …

Mrs. Mann is an 84:yearold woman who has recently suffered a mild stroke that is limiting her mobility. In order for her togo home, she will need a daily homecare attendant. Chase, the caseworker, works out the details of the homecare plan with Denn, Mrs. Mann's daughter. On Mrs. Mann's first day home, Chase learns that Mrs. Mann has ordered the homecare worker out of her home, asserting that she did not want a person of that race (using a racial epithet) in her home. What should Chase do? Given the unfortunate pervasiveness of racism and ethnic prejudice in the United States, this case scenario is hardly unusual. It illustrates a topic that has arisen frequently in a research project on the ethics of home healthcare being conducted by the Park Ridge Center in association with the Illinois Department on Aging and community and homecare providers. Nonetheless, while recognizing racism as morally wrong, some might ask in what sense-if at all-racism is an ethical issue or, at least, an ethical issue with any possibility of resolution. In many cases, the ability to accommodate discriminatory preference (even if this were somehow deemed morally unobjectionable) is precluded by the demographics of the available workforce. Moreover, laws against discrimination preclude hiring workers based on racial or ethnic considerations to satisfy the demands of a client. Does not the law override ethical considerations-even render them superfluous-in such cases? These considerations do not exhaust the possibilities for ethical reflection about Mrs. Mann and her caseworker. However, that some would not see an ethical problem in this case reveals the profound importance of the way we view a case for our ability to identify the ethical problems at stake. More significantly, it demonstrates that the perspective we adopt in viewing a moral problem will help determine and shape the actions we take in addressing that problem. The more comprehensive we can make our ethical perspective, the more opportunities for action we may perceive. In this essay, I will be describing a process of ethical reflection that explores a variety of individual perspectives that, when taken together, can be used in developing a comprehensive perspective on problems like those of Mrs. Mann and her caseworker. I will identify several different ethical perspectives-among many-that have salience for this case and the possibilities for action offered by each perspective. Each perspective is derived from one or more popular theoretical orientations in ethics; they will vary from one that perceives no ethical difficulty in the situation to views that suggest the existence of many ethical concerns. Most important, this process of ever deepening reflection will at the same time demonstrate the inadequacy of some of the more limited, though very popular, ways of considering ethical problems. Ethical discussion and reflection frequently end when people find a perspective that offers them an answer they can live with. A more expansive-and I think more appropriate-perspective reveals that there is no single answer, but rather a range of opportunities and possibilities. NO ETHICAL PROBLEM As noted above, some people might question whether the case of Mrs. Mann presents a serious ethical problem. While acknowledging that discrimination is a moral wrong, they assume that an ethics question arises only when a conflict occurs in which there is a viable choice to be made among a number of competing possibilities. Where social conditions preclude choice, such as where there are no homecare workers of a particular race available, or where the law dictates a practice (and thus decides the question), there is no viable choice available and, therefore, no ethical problem. This perspective may arise, in part, because discussions in applied ethics are frequently constructed around cases in which a choice is to be made according to particular moral values. …

Organizations can encourage and support individuals in doing good and right things-and they can hinder such behavior, discourage it, and even foster its opposite. It is easy to overlook the role of the community-based agency or organization that provides homecare, adult daycare, or related services to elders. The limited attention so far paid to the problems of offering such care has largely focused on the individuals who provide care and on the difficult choices they face. This focus, important as it is, may ignore the substantial power of an organization-even a mom and pop community care agency-to influence individual attitudes, decisions, and practices for good or ill. Organizations-human-service agencies among them-can be very complex entities, incorporating intricate patterns of human interaction and interdependence (Herman, 1997) and that nebulous phenomenon called organizational culture (Schein, I992; O'Reilly, I989), all of which shape individual' predispositions and behaviors in both obvious and subtle ways. From this perspective, creating an ethical organization is neither a small nor an unimportant task. WHAT IS AN ETHICAL ORGANIZATION? Creating an organization requires some agreement on what it means to be such an organization. Some would argue that it is actually misleading to speak of an organization, for such language suggests that the organization itself could be apart from the individuals who constitute it. If we want an organization, according to this argument, we should first make sure that the organization hires people. Once employed, those individuals must step up to the challenge and fulfill the responsibilities they have. In short, individuals bear responsibility for the nature of their organizations; it will not do to claim that the organization can somehow individuals to do good or evil (Potter, I996) or that the organization can be guilty of unethical behavior apart from identifiable individuals who lead it and staff it. While this notion of the organization has its merits, it is also one-sided. It seems to assume that an organization is-or should beled and staffed by moral heroes who are strong enough to withstand any dubious influences of peer pressure and organizational climate. This view overlooks the fact that organizations consist of highly interdependent relationships in which not only individuals but groups (homemakers and case managers in homecare, for example) influence each other in myriad ways (Herman, I997). Thus, while individuals have an indisputable responsibility in organizations, people also need their organization's support. Organizations can support individuals in doing good and right things-and they can hinder such behavior, discourage it, even foster its opposite. Developing mechanisms to address issues is critical to becoming a more organization. These mechanisms can help to support an overall consistency of behavior that transcends idiosyncratic differences, day-to-day inconsistencies, and even the weakness of character of individual practitioners (Schyve, I996). To some, the test of an organization is whether it establishes standards for the conduct of its affairs and for the conduct of the individuals it employs, then monitors with those standards. In this understanding, the term eth/ca means conforming to a set of rules or a code of conduct. Such conformity may be a necessary characteristic of an organization; but even if it is necessary, compliance is not sufficient. By itself, it reflects a too-limited understanding of the terms ethics and ethical. In a broader view, an organization is one that is also continually reflective about its responsibilities. Ethics in this broader sense involves a continual asking and learning about the issues that should be addressed, the values that should be considered, and the voices (internal and external) that should be heard and attended to (Tronto, I993; McCurdy, I997). …