Care of Elders in the Community: Moral Lives, Moral Quandaries By Martha Holstein and Phyllis Mitzen, guest editors 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, 1992This 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 ought 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 Generations 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 articles 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. The potential but unproved "woodwork" effect (whereby families who had been providing unpaid care would "come out of the woodwork" to take advantage of public programs) is one source of anxiety. States also recognize that for many clients an adequate care plan may not be less costly than care in a nursing home, and for the very impaired client, noninstitutional care may always seem inadequate. The possibility of an inadequate care plan creates elemental fears about safety and quality but opens the door for the concept of negotiated risk (see Rosalie Kane and Carrie Levin, this issue).
There are other problems. In many parts of the country, these include a shortage of paid homecare workers, serious problems with worker turnover, and negative consequences of inadequate training, especially as the homecare worker assumes more difficult tasks. When meeting with case managers and supervisors around Illinois, the editors encountered queries like this one: Is it better to have no homecare aide than one who is only marginally competent or worse? It is difficult to respond when there are no workers available, or no workers available at the minimum wage. Failing a lobbying effort to enlarge state budgets for homecare and renegotiate Medicaid reimbursement rates (and direct such increases to wages for care workers), what else is possible? From the worker's perspective, as Robyn Stone and Yoshiko Yamada argue in their article, other kinds of problems emerge. Difficulties for workers include low pay, problems balancing the needs of their respective clients and drawing boundaries between their lives and their work, and poor treatment by the client or the client's family. The almost single-minded emphasis on clients' rights tends to diminish an equally important concern--the idea that care workers also deserve dignity and respect. To care for workers is also to care for their well-being. Hence, salary issues, safety concerns, and conditions of employment are, or ought to be, compelling matters. Racist remarks, often directed at the care worker by the client, and sometimes the outright refusal to have someone of "that" race come into my home, are not infrequent (see David Sinacore-Guinn, this issue). We know that discrimination is both illegal and morally reprehensible, but what are our specific ethical obligations in this regard? Ethical questions that center on workers have only recently garnered attention (see Kane, 1994; McCurdy, 1997). What are the limits of workers' obligations, for example, to travel to neighborhoods where they fear drug deals and violence on the streets or to homes where they encounter abusive children or filth almost beyond their imagination?
Insensitivity (often because of limited knowledge) about culturally diverse practices among clients in areas that directly affect their dignity and well-being also troubles care providers, the agencies for which they work, and the state that often funds the programs. What is the caregiver to do when her ethical code--and agency requirements--demand informed consent but her patient's family insists that the patient not be informed of the diagnosis and treatment? This type of situation raises another question: Is autonomy a universally held principle, which informed consent enacts in the healthcare setting, or is it a more particular moral value that bolsters some Western ideas of what it means to respect a person's dignity? The difference between these two views not only reflects external value differences but reaches deep into notions of personhood, family, and community and tests our abilities to empathize and negotiate solutions. Harry R. Moody's article attends to these concerns.
Such issues broach the often neglected area that David McCurdy addresses. Organizations are not neutral entities. They have moral commitments and moral personalities. Many often have specific codes of ethics, but these documents may not in fact govern the day-to-day practices that actually shape an individual's ability to work comfortably, effectively, and indeed ethically. Some organizations, such as Chicago's Council for Jewish Elderly (see Phyllis Mitzen's article, this issue), have established organizational ethics committees to address decisions and practices that are problematic. Other organizations focus on caregiving issues; the effort of case managers at the Milwaukee Department that Gail McLelland describes in her article provides an example of this process and the commitment that it requires.
Families, particularly wives, daughters, and daughters-in-law, have always been the heart and soul of long-term-care policy in the United States, but these caregivers are often caught in webs of conflicting responsibilities and loyalties. Responding to an older person's wishes concerning care--for example, to die at home--can create devastating consequences for the caregiver as the article by Stephen Ellingson and Jon Fuller suggests. To protect one individual's personal autonomy may deny or limit autonomy for another person. Indeed, many caregivers seem to willingly and even aggressively sacrifice their own needs to care for another. While these attitudes and behaviors are most likely linked closely to social constructions of gender, they are also strongly connected to who we are, and they are not easily set aside. Gerontologists have called attention to the burden of family caregiving, and ethicists are joining gerontologists in that conversation by studying gender injustice in caregiving and what it might take to remedy this situation (Holstein, forthcoming; Hooyman and Gonyea, 1995; Okin, 1989). Women caregivers can rarely transfer their responsibilities to others, since they often lack the resources to pay for help and often get little or no assistance from others in the family (see Nelson, 1998, for a philosophical analysis of and suggestions for handling this problem). These same women are also bearing the brunt of patients being discharged earlier from hospitals and thus needing more care at home or in other nonacute settings. Since it is unlikely that public spending on caregiving will increase, the one expandable component is the "informal" care by family members, especially women. Yet, what women do is not counted as a cost (England et al., 1991) even though estimates suggest that this informal work, if translated into dollars, is worth more than double the public expenditure of funds (Glazer, 1990). The two opposing articles on paid family caregiving (see Jean Blaser, and Lori Simon-Rusinowitz, Kevin Mahoney, and A. E. Benjamin, this issue) analyze one effort to remedy gender injustice. Since the gender-biased structure of the labor market and women's place in the lower-paid secondary sector reinforce cultural and social norms that expect women to do the caring work, paying women to provide care responds, however minimally, to issues of fairness. But, as these articles reveal, such solutions solve some problems while creating others.
Worrying about gender injustice and seeking ways to remedy it reflect another trend in ethical thinking--recognition of the importance of the family beyond their role as conveyors of their relative's wishes (see Nelson and Nelson, this issue). Again, this emphasis on the family serves as a counterweight to the almost single-minded focus on client or patient autonomy that has pervaded the ethics literature.
Case managers are often both advocates and gatekeepers who are of course likely to see situations they encounter from a perspective shaped by their own values and experiences (see Robyn Golden and Sallie Sonneborn, this issue). Put into the dual role of caring about the safety and well-being of each client and the overall need to allocate agency resources fairly and in accord with regulations and state requirements, case managers must be alert to their own expectations regarding clients' family members or friends and to their understanding of the meaning of such terms as safety. Clients and their care providers may have differing ideas about risk (see Rosalie Kane and Carrie Levin, this issue, and Collopy, 1995).
Specific illnesses or conditions raise unique problems when elders are cared for at home. Dementia, as Dan Kuhn's article shows, almost always raises questions about risk and safety, about patterns of caregiving, about stigma and telling the truth, about dignity and self-maintaining activities. In many ways, we are only beginning to grapple with the complex ethical issues that Alzheimer's disease raises (see Journal of Clinical Ethics, 1998, for an entire issue devoted to ethics and Alzheimer's disease). End-of-life care for the patient who wishes to die at home can be smooth and comfortable but it can also be "messy" (see Steve Ellingson and John Fuller, this issue). Even in well-intentioned families, it might prove to be too difficult to keep the dying person at home. This situation, like that with dementia, is one in which the solutions to difficult problems will always be less than ideal.
How We Think About Ethics
The above discussion outlines some of the familiar ethical and practical problems that arise in home- and community-based care for older people with physical and mental disabilities. These problems challenge us to ask questions about how we think about ethics. Many professionals have been trained to think about resolving ethical problems by balancing principles such as autonomy or "do no harm." Certain analytical pathways have evolved: Gather the facts, determine the values of each party, identify the ethical problem, work toward a justifiable solution, and develop a workable plan of action (Haddad and Kapp, 1991). The key value conflict has generally been framed as patient autonomy versus professional beneficence, or the directive to do good for the patient.
This approach, however, both serves and limits us as we analyze the ethical problems that arise in noninstitutional long-term care. On the one hand, this traditional way of approaching ethical problems is relatively clear-cut, whereas other strategies, such as those Mark Waymack describes in his article, have yet to be worked through in a number of different situations before they can easily fit into day-to-day practice. Joan Tronto, Larry Polivka, and Hilde Nelson and Jim Nelson in this issue provide important insights into how that might be done. One purpose of this issue is to explore these ideas and invite readers to think with us about their application. In particular, how do we grapple with the caring relationships, frequently in situations of considerable dependency and frailty, that are central to long-term care? And how do we take into account the moral virtues that so many people articulate as central to their lives, virtues such as compassion, integrity, courage, fidelity, and loyalty?
Supervisors, case managers, homecare aides, family members, friends, and, of course, elders themselves, reveal their moral practices by how they live--by the ways they seek to maintain their self-respect and by the people to whom they choose to be accountable, for what, and why. Morality is embedded in the day-to-day practices of life, manifested through actions that reveal our fundamental values, commitments, and beliefs; it is an expression of our identity (Flanagan, 1991). As practitioners, we live our morality every time we enter a client's home by the greetings we offer, by the quality of our touching, and by our attentiveness as much as by giving the client choice.
To do this work, we need some sense of direction, a moral compass that we will get by reflecting on actual practice and by asking how we might do it better. Waltzer (1988), a political philosopher, uses the image of Hamlet's mother looking at herself in the mirror. She sees her current image, but at the same time she also sees the image of what she might be--not radically different from what is, but different enough to matter. Similarly, we can ask ourselves what good we wish to achieve in our practices, what our aims are, and how we can assess our movement toward them. Achieving those aims might mean not guaranteeing a specific form of autonomy specific to our elder clients but rather having a conversation in which caregivers and care recipients each talk about what they hope this practice of caregiving will express in terms of, for example, responsibilities, or consideration, or compassion, or trust. At the end of the day, we can ask, Did our resolution of the moral problem sustain the integrity of each person and the relationships among all parties? Did we protect or enhance some valued good? Can we account for our actions in publicly transparent ways? We hope this issue of Generations will move us in that direction. 1
The editors wish to thank the Retirement Research Foundation for its generous support of the project Home and Community Based Services for Elders: An Ethics Resource for Providers. While this project is still far from completion, it has revealed in great detail the situations care providers face and started us on the path of translating theoretical ideas into practice. The project's working group also provided invaluable help developing this issue. The editors would also like to thank David McCurdy, for his readiness to be a thoughtful sounding board and astute critic as questions arose in developing this issue of Generations, and David Sinacore-Guinn and Steve Ellingson for a critical reading of this introduction.
References
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Collopy, B. 1995. "Safety and Independence: Rethinking Some Basic Concepts in Long-Term Care." In L. McCullough and N. Wilson, Long-Term Care Decisions: Ethical and Conceptual Dimensions. Baltimore, Md.: Johns Hopkins University Press.
England, S., et al. 1991. "Community Care Politics and Gender Justice." In M. Minkler and C. Estes, eds., Critical Perspectives on Aging; The Political and Moral Economy of Growing Old. Amityville, N.Y.: Baywood.
Flanagan, O. 1991. Varieties of Moral Personality: Ethics and Psychological Realism. Cambridge, Mass.: Harvard University Press.
Glazer, N. 1990. "The Home as a Workshop: Women and Amateur Nurses and Medical Care Providers." Gender and Society 4: 47999.
Haddad, A., and Kapp, M. 1991. Ethical and Legal Issues in Home Health Care. Norwalk, Conn.: Appleton and Lange.
Holstein, M. Forthcoming. "Home Care, Women, and Aging: A Case Study of Injustice." In M. U. Walker, ed., Mother Time: Women, Aging, and Ethics. Lanham, Md.: Rowman and Littlefield.
Hooyman, N., and Gonyea, J. 1995. Feminist Perspectives on Family Care: Policies for Gender Justice. Thousand Oaks, Calif.: Sage.
Journal of Clinical Ethics. 1998. Special issue on ethics and Alzheimer's disease. 9(3).
Kane, R. A. 1994. "Ethics and the Frontline Care Worker: Mapping the Subject." Generations 18(3): 714.
McCurdy, D. 1997. "Appreciating Staff Members as Moral Stakeholders." Ethical Currents 48 (Winter): 910.
Nelson, J. 1998. "Reasons and Feelings, Duty and Dementia." Journal of Clinical Ethics 9(1): 5865.
Okin, S. M. 1989. Justice, Gender, and the Family. New York: Basic Books.
Waltzer, M. 1988. The Company of Critics: Social Criticism and Political Commitment in the Twentieth Century. New York: Basic Books.
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