The U.S. healthcare and long-term-care systems are experiencing major shifts in the way that care is financed and delivered for people with chronic disabilities. Managed care and integrated care systems are changing the way that older people and others with chronic care needs get services, and financial incentives are pushing people with acute care needs out of hospitals as quickly as possible into nursing homes and their own homes. Indeed, while the nursing home is still the dominant care setting for people with long-term-- care needs, recent developments include aggressive move to keep individuals in the community, in their own homes, or in alternative residential care environments. At the center of this healthcare chaos are the frontline long-term-care workers-the nursing home and homecare aides providing the bulk of formal, paid personal care and instrumental assistance to elderly and younger disabled people. New ethical issues are emerging in relation to how paraprofessionals do their jobs as terms such as choice, autonomy, privacy, and managed risk become part of the long-term-care vernacular. In this article, we identify some of the key ethical concerns and highlight several major trends that heighten the need to address these issues from the worker perspective. THE ETHICAL CONTEXT: AN OVERVIEW A number of frameworks may be applied in addressing the ethical concerns surrounding the paraprofessional nursing home and homecare worker. A look at the elements of medical ethics is obvious first step in examining the role of the long-term-care worker and her or his relationship to the care recipient (Hayley et al., 1996). These elements include (1) the degree to which the worker respects the autonomy of the care recipient (e.g., as related to such concerns as self-determination, privacy, respect for the individual); (2) beneficence (or doing what is best for the care recipient); (3) fidelity (i.e., establishing trust and maintaining confidentiality); and (4) justice, that is, the extent to which the worker applies equitable treatment and distribution of resources to all care recipients. The professional ethical code for nursing assistants includes respect for client autonomy but also emphasizes the need to choose the greatest good for the least harm, knowing one's own limits, and applying a fairness test to all actions. Discussions about ethics in long-term care tend to address these issues from the perspective of the care recipient, focusing on the moral and ethical concerns of caring for the elderly or younger disabled client. But Kane (1994) has argued that the discussion needs to be broader. An examination of ethics, she says, must include not only the responsibilities of the worker (the worker's behavior toward the client and family and decision making about the care), but also responsibilities to the worker (policies regarding the deployment and working conditions of these frontline caregivers). These frontline workers have rights as well as responsibilities, and the ethical concerns regarding their status and treatment in the workplace and in society must be recognized. What is more, Kane says, nursing home and homecare aides are moral agents, and the ethical soul-searching should not be left to the workers' superiors, as some have argued (e.g., Kjervik, 1990). Given the very close and often intimate relationship between frontline workers and their clients, Aroskar and colleagues (1990) argue that to address special and perhaps difficult situations it is not sufficient to simply have a formal code of ethics. Rather, there is a need for everyday ethics defined by Kane (1994) as an ethic of intimacy, one that recognizes human need for affiliation and responds to the myriad of issues that arise from day to day, not a set of ethics procedures that are trotted out for large life and death decisions In ethical decision-making, where, for example, does a worker draw the line between petty theft and keeping the change; what should she do about accepting small gifts from family members for special services rendered? …

First, no harm. This is a major tenet in medical ethics. It is also the first statement of the ethical principle of beneficencedoing good, which holds that ethical professionals act so as to benefit their clientele and, at the very least, to no harm. This most basic goal of doing no has been extended in the view of some people to mean that the care and service plans developed for home- and community-based services (HCBS) for older people should be designed to maximize physical safety and protection and to minimize the likelihood of preventable negative events, such as falls, injuries, or relapses. The social workers, nurses, and others who hold up safety as a goal may be doing so as part of their commitment to no harm. But such professionals may have lost perspective on the nature of their appropriate role in helping individuals plan their lives; they may be assuming too much responsibility. They may have also lost perspective on the facts-that is, what actually constitutes safety and what actually constitutes risk. With do no harm as the overriding goal, protecting clients ultimately may mean declining to serve them in their own homes because the plan may be unsafe. Protecting clients ultimately may mean reshaping assisted living settings through regulations until they mirror more restrictive settings like nursing homes. Paradoxically, the desire to no and to achieve safety above all other goals may actually result in for the consumer. The most exquisitely difficult ethical dilemmas that arise in home- and community-based services concern the proper boundaries between promoting freedom for older people and avoiding interference with their life goals, on the one hand, and acting responsibly to promote their health and safety, on the other. These are anguishing situations for professionals. The case files of ethics committees that have sprung up in HCBS are littered with examples wherein professionals wrestle consciously and conscientiously with the problems of striking the right balance between safety and freedom. Often, the professional has the painful sense that he or she is joining the forces pushing unwilling clients toward nursing homes, yet the push seems to be for their own good. The problems are exacerbated by the profound ambivalence that so many people feel about tradeoffs between their freedom and safety. Older people-like people of all ages-want to be both free and safe. Older HCBS consumers, who often are aware of their increased risks and diminished capabilities, can have great difficulty making a necessary choice between the two values. In one study of more than 800 elderly clients in these settings, about a third chose freedom, a third chose safety, and a third vacillated between the two (Degenholtz, Kane, and Kivnick, I997). Professionals express similar ambivalence. One study (Kane, 1995) showed respondents overwhelmingly agreeing with the proposition that older HCBS clients should be free to act against advice of a professional from an agency or program regarding risk-taking without the agency or program withdrawing from the scene. When asked to elaborate the circumstances under which such client risk-taking would be permissible, almost all responded with a variant on the phrase it does not jeopardize their own safety and that of others. Professionals endorsed informed risk-taking, but apparently only when it was risk-free! In this article, we examine the concept of consumer risk-taking and professional responsibility in home- and community-based services. We then turn to possible ways for professionals to negotiate these ethical minefields, including an exploration of the relatively new concept of managed risk contracting, or negotiated risk. We argue that active steps need to be taken to preserve and promote the right of competent older people to make decisions about their care in general, not just narrow decisions about specific procedures. …

Although much has been written in recent years about the ethics of working with the elderly, little attention has been given to the development of the clinician's knowledge of his or her own values and how these might affect work with the client. Ethics in social work, case management, nursing, and other helping professions has largely been focused on decision making rather than on the decision maker (Abramson, 1996). This article will explore the process by which practitioners must evaluate their own perceptions and actions in relation to their elderly clients within ethical framework. An ethical dilemma arises when the practitioner has to choose between two or more conflicting values. The dilemma is further complicated when practitioners are unaware of how their own personal values and biases may influence their decision-making processes. Although substantial body of literature addresses ethical issues in working with the elderly, most of it focuses on the ethics of clients particular situation. This article focuses on how the clinician's personal biases may affect and motivate decisions, and how, as result, the acceptable boundaries between the interests of the client and the interests of the clinician, as set forth in the professionals' respective codes of ethics and standards of practice, may become blurred. Recognizing bias and respecting boundaries are closely intertwined. In this article, boundaries refers to the line between therapeutic and nontherapeutic behavior. A boundary violation occurs when the practitioner's actions are not checked by the rules of professional conduct. In their research, Levkoff and Wetle (1993) showed that healthcare providers who assess the needs of the elderly often make decisions based on their own preferences, attitudes, and beliefs and other factors of which they may be unaware. Practitioners who are well versed in identifying and working through ethical dilemmas and who comfortably and consistently explore their own personal prejudices and biases will practice more effectively. It is important to note up front that all human beings have biases and that biases should not be looked at as or wrong It is important that practitioners become aware of their own biases and understand their origins so they can make conscious decisions regarding their actions. Issues of biases and boundaries are often complicated when the client is older adult, because aging is particularly likely to create personal issues for the practitioner-aging is something everyone must face. A professional's personal biases can result in countertransference, which refers to the conscious or unconscious phenomenon that occurs when the clinician reacts to client based on the clinician's own past experiences, preferences, preconceptions, fantasies, and fears. Very simply put, countertransference is the powerful linkage between the helper's personal feelings and his or her interventions and behaviors (Genevay and Katz, I99o). While Freud defined countertransference as an unconscious process involving the arousal of the analysts unresolved conflicts and problems that had to be eliminated in order to function effectively,' the countertransference process is now regarded as appropriate, natural conscious or unconscious emotional response. If it is understood, countertransference can be important therapeutic tool, serving as basis for empathy and deeper understanding. Left unchecked, however, countertransference may result in tendency for the clinician to overhelp or underhelp based on his or her own feelings, rather than on the clients situation and needs. ETHICAL DILEMMAS Webster's Dictionary defines ethics as a set of moral principles and values; the discipline dealing with what is good and bad and with moral duty and obligation Since all aspects of the helping professions have ethical implications, it is important for all clinicians to develop personal code of ethics. …

The questions of bioethics and medical ethics are not purely intellectual questions. They are questions of the heart as well as the mind, and questions of social organization, not just the marshalling of arguments. It is harder to reform one's heart or one's society than to improve one's arguments. The sort of disciplined reflection we need on these questions is not merely intellectual. -Baier, 1992 This issue of Generations, with its focus on the ethics of noninstitutional long-term care for the elderly, comes at an auspicious moment for two very different reasons. Applied ethics, the study of how we to behave in situations involving human care, is in flux. No longer does it appear sufficient to call upon set principles and rules to guide action. Contributions from feminism, narrative, moral psychology, and the social sciences have recently invigorated conversations about ought questions and raised doubts about the possibilities for moral certainties. It is an exciting, albeit difficult, time as we seek to integrate the new with the old. Simultaneously, caring for older people outside of institutions is gaining momentum; given the available alternatives, it seems to be what older people want above all. This wish and its fulfillment, however, can be quite problematic for individuals, for families, and for communities. In this introduction, we would like to explore both aspects of this changing situation. Setting a consistent theme, Larry Polivka challenges policy makers and policy analysts (including himself) to make homecare a more viable option for older people needing care. He insists that one more perfect study will not prove anything more than we already know about homecare. While another study may add information about cost effectiveness, for example, the moral values at stake are already quite clear. Yet, even if older people regularly opt for and receive homecare rather than institutional care, that can neither eliminate value conflicts nor solve larger moral concerns. While the entire issue of Genn,:ren/ will examine these problematic areas, this introduction will touch upon them briefly to set the stage for what follows. (We also note that several examples in these artides are acute-care cases. Sometimes acute-care situations differ so much from those in homecare that they can offer little guidance, but in these cases [see especially Harry R. Moody, and Hilde Nelson and James Nelson] the authors' points apply quite well to the homecare setting.) THE CHALLENGES The lack of adequate public resources to serve clients in a time of perceived scarcity is often the source of much of the ethical anguish that care providers and families face. Homecare and community care are tied to state and federal policy developments that determine the reimbursable service package. Recent federal developments do not bode well for local programs. Changes in reimbursement for home healthcare and Medicare + Choice and other forms of managed long-term care seem likely to seriously affect the care available to elders at home and in the community. (This problem is of course mitigated for individuals and families who do not rely on public funding to cover the costs of care.) Short of remarkably generous donors, agencies and their employees must make choices about allocating resources. In choosing, there may be no right strategies but only marginally acceptable options that serve in the absence of the broader policy changes that we as advocates seek. It is also a time when moral imagination can open new possibilities. For example, can we find voluntary assistance beyond the family? Could a person do with less? States with Medicaid homecare waivers and other state-funded programs have historically justified providing home- and community-based care on two grounds: It is the preference of elders, and it costs less than nursing home care. But in fact, states are often reluctant to develop community care programs because they fear the costs. …

Mrs. Morse, shriveled and bent from osteoporosis, is 76 years old. She broke her hip in a fall five years ago, at which time she moved in with her daughter and son-- in-law, Carolyn and Matthew Broome. A second fall three years later left her bedridden, and now she is back in the hospital with a long list of problems. Among other things, she has developed serious pressure sores-- some bad enough that bone tissue shows through-from being bedridden for so long. She needs regular changes of dressings on these sores, and while this is quite a painful procedure, medication has kept the pain at manageable levels. Her daughter (and to a lesser extent, her son-inlaw) is deeply involved in her care. When the physicians ask Mrs. Morse for permission to do a procedure, she invariably responds, "I don't know. You'll have to ask my daughter" Carolyn Broome, who is an attorney, keeps explaining to her mother that she must make these decisions for herself, but Mrs. Morse just shakes her head and says, "You decide." Carolyn's decisions have been reasonable ones, but recently she has become very concerned about the amount of pain medication her mother is getting. She had a long phone conversation with her aunt Bessie, Mrs. Morse's sister about this and has been demanding ever since that the analgesics be administered much more sparingly. She says they make it hard for her mother to visit with her, and she wants her mother to be alert. In the opinion of the treatment team, Carolyn Broome is becoming overinvolved in her mothers ill ness, letting her own psychological needs push her into making decisions that are increasingly inappropriate. The team learned that the sister has not even visited Mrs. Mose in a number of years. The call goes out to the hospital's ethics committee in hopes that some strategy for changing Carolyn Broome's mind about reducing the pain medication can be worked out. Failing that, perhaps there is a way of get ting her out of the decision-making loop. As one nurse puts it, "I feel as though I'm being forced to participate in the abuse of a vulnerable patient."1 This is obviously a story about ethical conflict between a patient's professional caregivers and a member of her family. Less obviously, though, it is also a story about the care that is given by one generation of a family to a member of an older generation. In what follows, we explore a moral challenge common to multigenerational family life, particularly as it involves generational differences in household roles and responsibilities. We will argue that unless professional providers of healthcare are aware of this challenge and respectful of the demands that it places on family caregivers, providers can inadvertently exacerbate the difficulties the family faces when an elderly person requires medical care. Mrs. Morse's treatment team is on the very brink of doing just that. So first we will identify the challenge, then we will offer ways to respond to it, and finally we will consider what the professionals involved in Mrs. Morse's care are doing to hurt this family. We conceptualize the challenge in a particular way, as a version of the general social problem of dealing with diversity-in this case, differences related to gender and generation. We identify three linked factors that make it difficult to deal well with intergenerational diversity within households-change, identity, and death. In reflecting on the virtues that are needed for coming to terms with these factors, we find the resources that can keep Mrs. Morse's treatment team from standing in the way of the daughter's attempts to care admirably for her mother. THE MULTIGENERATIONAL FAMILY AS A 'MULTICULTURAL' FAMILY Consider two prominent features of many contemporary families, especially middle-class American ones. The first feature is their role in providing fairly comprehensive care for their members, particularly those who are very young and those who are very old. …

A conflict for policy makers and service providers One of the more troubling dilemmas that policy makers and service providers must address in response to the coming granny boom is how to construct an ethical framework for providing services for the elderly in an era of limited resources. AUTONOMY AND RESOURCE LIMITATIONS For policy makers, the central dilemma is whether the need (perceived or real) to conserve resources justifies limiting individual autonomy-and if so, to what degree. For service providers, the issue is how to balance an individual clients demand for personal autonomy with the community's demand to conserve resources, especially when the latter demand creates policies that impinge upon the former. Both policy makers and providers are increasingly expected to perform a balancing act between these often conflicting demands. In part this situation arises because, as a group, the elderly are major users of community resources and, in the view of many, are or will be responsible for the scarcity of resources in the next century However, as individuals whose autonomy is threatened by the natural processes of aging, elders are reluctant to risk further diminution of their personal autonomy by forgoing use of the very resources that enable them to retain their autonomy. I believe that much of the confusion about autonomy and resources has to do with a subtle change in how autonomy is defined, vis a vis the larger community. During the twentieth century, autonomy has taken on a meaning that focuses on individual choice or preferences. Autonomy did not always have this primary focus. In Habits ofthe Heart, Bellah and his coauthors (1985) note this shift: We have moved from . . . [a society] in which economic and social relationships were visible and, however imperfectly, [were] morally interpreted as parts of a larger common life-to a society . . . in which the individual can only rarely and with difficulty understand himself and his activities as interrelated in morally meaningfulways with those of other, different Americans (p. 50). In other words, in the past, autonomy was located within the context of community political life. However, in recent years, society (including legislatures and courts) began to view autonomy in personal, social, and economic contexts, and the view of autonomy as a manifestation of individual participation in community life was lost. The conflict for policy makers and service providers is that the ethical and legal mandates of their roles call upon them to be advocatesfor constituents, patients, clients, consumersand as such they are obliged to provide the highest quality care or representation (Hayley et al., 1996). This obligation, however, can come into conflict with other obligations-to other clients and the polity; as employees of public agencies or even private agencies that use public resources they are obligated to steward and distribute resources fairly (Lipson and Naierman, 1996). These conflicting obligations create ethical dilemmas that are not easily resolved. Moreover, as a society, we have relied on the political environment to resolve disagreements about resource allocation (who gets what), but in the context of an equally strong recognition of individual rights that has, more often than not, focused on noninterference rather than on welfare rights. What happens on the local level is inevitably shaped by national and state policy choices that largely structure the range of choices that service providers have available to them. It should surprise no one that the options available often seem like no real options at all. My thesis then is the following: During the past thirty years, American society has separated how it makes decisions about preserving individual autonomy from its decision making about the equitable allocation of resources. As a result, social service providers, concerned with both autonomy and the equitable distribution of the resources made available to them, often find themselves in the painful situation where distributing resources as equitably as possible comes at the price of individual autonomy. …

As a researcher and polly analyst in aging, I have been puzzled by the wide and arguably growing gap between, on the one hand, what we know about the long-term-care preferences of the elderly for community-based alternatives to institutional care and about our capacity to provide these alternatives cost effectively and, on the other hand, the kind of care, mostly institutional, we have in fact made available. Even though over the last several years we have learned how to make community-based programs affordable, long-term care remains dominated by nursing homes in the vast majority of states. This failure to use what we know to change long-term care in ways vastly preferred by those at greatest risk of needing care (the frail elderly) reflects less a gap in knowledge than a lapse of moral imagination. We have not paid sufficient attention to the ethical dimension of the debate over healthcare policy for the elderly, especially the frail elderly with chronic conditions and impairments requiring long-term care. We have been absorbed with cost-containment, efficiency, and costeffectiveness issues and have tended to pay little attention to the many ethical and moral assumptions inherently related to these issues, which are most commonly treated as technical matters. I think this situation is a manifestation of what Taylor (1991) has described as the domination ofinstrumental reason-pure, self-verifying rationality, mathematical calculations, for example, divorced from messy real life-in the conduct of contemporary policy studies and in policy making. Instrumental reason, as described by Taylor, has dominated our thinking about long-term-care policy and practice. Many of us, I think, have long believed that we were just one or two studies short of having the evidence needed to make a conclusive case for the cost-effectiveness of home- and community-based alternatives to nursing homes and the creation of a consumer-oriented long-termcare system. I am now convinced, however, that we cannot rely on either cumulative learning from multiple research projects or a big bang breakthrough (the study) to achieve a basic change in long-term-care policy In other words, the science of long-term care will not do the work of the moral imagination in the development of a long-term-care system that is fundamentally responsive to what the frail elderly and their caregivers want and deserve. We already have a body of research that demonstrates the capacity of community-based programs to serve the seriously impaired in a cost-effective fashion. These studies have found that by making available certain services to highrisk recipients in increased quantities (number of nurse visits, hours of homemaker services, etc.) community programs may reduce nursing home use. Findings reported in recent articles by Jette, Tennstedt, and Crawford (1995), Greene and colleagues (1995), and Weissert (1995, I997) indicate that certain mixes of clients and services have the potential to reduce nursing home use substantially. We certainly need more research like these studies. We should not, however, expect that the results of research alone will create sufficient conditions for a profound change in the direction of long-term-care policy. Such change will require a collective change of heart that is fundamentally dependent on the creation of a clear moral vision for long-term care. Research can help us identify the most efficient and consumerresponsive methods of achieving policy priorities inherent in a moral vision. Research is not, however, a substitute for the kind of moral reasoning we need to undertake as a community. We must be mindful of fiscal constraints, but not to the extent that the only option most older people end up with is institutional care. And, as is well described by George Agich (I993) in his discussion of autonomy and long-term care, we must abandon our or attitude toward autonomy and independence: The lack of adequate long-term care insurance, induding home care services and support in this country, often makes illness or disability for elders an all or nothing choice: either one accepts full dependence in a hospital or nursing home because medical problems are not attended to in a timely fashion, or one struggles with the functional disabilities associated with the illnesses of being old without adequate care until disaster arrives. …

Show how long you take to rise from a chair and walk ten feet. Circle just one answer on a standardized test question. Spell the word world backwards. Count down from twenty to one. Describe a problem you have with incontinence or sexual performance. Ordered not to move, talk, or breathe, remain calm while strapped to a plank squeezed inside a narrow, thrumming PET scan machine. This is some of what you can expect as the subject of a gerontological assessment. You could be a passive biological specimen whose brain or organ function is recorded, a subject who must show rather than say what you can do, or a credible “self-reporter” on a health survey—or all three. The purpose of this article is to describe some of what has been learned about the client’s experience of the assessment process. The issues addressed relate to the experiences of people in person-to-person assessments (face-to-face or administered over the phone) but also apply to “paper and pencil” style interviews that clients fill out themselves. Practitioners and clinicians have long been attentive to the actual events and social interactions within the assessment process, understanding that they shape, by intention or otherwise, how clients respond to assessment tools. Fortunately, research and science are now catching up. Recent advances in theory and methodology now permit greater attuning of tests to research subjects. Advances on several fronts have revealed the need for a multidisciplinary approach. New understanding of the assessment experience has been provided by sociolinguistics and social communication (Coupland, Coupland, and Giles, 1991; Gumperz, 1982; Sacks, Schlegoff, and Jefferson, 1978; Mishler, 1986). These areas of study provide a framework for examining the language expressed in social settings and also for understanding dialogue as the means of resolving differences between the “agendas” of speakers. Medical anthropology (Scheer and Luborsky, 1991; Luborsky, 1995; Luborsky, 1993) has helped to identify how “self-reports” and the meaning and experience of assessment are shaped by historical, sociocultural, developmental, and individual factors. The ways that people process information and perform during assessment situations have been identified by psychology research in both cognitive and social realms (Beisecker, 1996; Haug and Ory, 1987; Jobe, Keller, and Smith, 1995; Roter and Hall, 1992; Sudman and Schwarz, 1995). From another quarter, the advent of the Participatory Action Research model (Whyte, 1991; NIDRR, 1989), led by advocacy groups arguing for an increased voice in research, has broadened our knowledge by mandating the incorporation of consumers as part of the team in each phase of the assessment process, from design to dissemination. To determine how research participants make sense of an assessment would require application of current scientific knowledge about social, interactional, developmental, cultural and ethnic, and historical processes. Such a Herculean task is beyond the scope of this paper. However, there are some basic areas in which a summary of current knowledge about the client’s perspective on the assessment process can provide insight and useful information for practitioners, and these areas will be the focus of this paper, as addressed below. The discussion and accompanying examples are drawn from work in which we have identified, through close observations and analysis of verbatim transcripts of assessments, issues that critically affect the experience, and sometimes the behavior, of people who are being assessed.