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Ethics, Aging, and Long-Term Care: Questioning What “Everyone Knows”

MARTHA B. HOLSTEIN

INTRODUCTION

Ethics is a disciplined and systematized reflection on moral practices (Walker, 2003). It offers a means to expose taken-for-granted values, judgments, responsibilities, aims, and actions to critical scrutiny while also inviting the ability to address new or emergent areas of concern. Contemporary attention to ethics, aging, and long-term care traces its beginnings to the mid-1980s with the path-breaking initiatives of The Retirement Research Foundation. Encompassing the approach developed to analyze moral problems, the core values that ethical thinking then relied on, and the areas deemed appropriate for ethical consideration, an examination in 2015 is part of the “critical turn” that we are witnessing in so many fields today (see Holstein, Parks, & Waymack, 2011). With this chapter’s grounding in the meanings of autonomy, readers are less likely to raise questions about what autonomy means in practice or how attending so exclusively to that principle has often effaced social justice concerns.

This chapter explores what it means to be a practitioner, a resident (in a nursing home or other congregate living site), or both, how these notions influence conceptions of autonomy, and how a different way of understanding autonomy, as well as how the ethical principles of beneficence, nonmaleficence, and justice are by themselves inadequate to address the questions that arise in long-term care. The chapter suggests how injustices fester in long-term care policy and practice and critiques what has become the standard paradigm for analyzing ethical problems in long-term care. First, it is important to ground these viewpoints both conceptually and personally because there is no neutral starting place from which to consider ethical concerns (Walker, 2003).

PERSPECTIVE: A CONCEPTUAL AND PERSONAL ORIENTATION

Who we are affects what we see, how we think, judgments we reach, and hence, actions that become possibilities. This author addresses issues seen from a commitment to feminist ethics (concerned with care and responsibility and invested in action to remedy injustice) and critical gerontology (scientific understanding cannot be divorced from either values or subjective aspects of the lived experience of the older person). These commitments mean that ethical primacy is placed on the ways in which gender, race, and/or class create situations of unequal power that subtly but consistently disadvantage individuals by virtue of these characteristics. They inform long-term care constructs such as giving and receiving care, justice within families, and end-of-life care. “Doing ethical work” using a feminist ethics approach means that emotion counts, context matters, and that abstract principles and rules are to be borne in mind but are not the sole arbiters of what counts in particular relationships among people. It means thinking about an autonomous person not as an isolated individual who closely guards a zone of freedom, but rather as a person who is interdependent and enmeshed in relationships of care that deserve support and protection (MacKenzie & Stoljar, 2000). It means acknowledging inevitable ambiguities and accepting that good ethical work may be described as the process whereby “reasonable people struggle together to reach judgments” (Pritchard, 2006, p. 7). For this reason, no one approach to addressing ethical dilemmas is sufficient to respond to the issues and people who are involved. An approach related to feminist ethics is communicative ethics (Cooper, 2004; Hugman, 2005; Johnson, 1999; Moody, 1992), which invites information gathering, deliberation, and negotiation (Johnson, 1999) among equal participants who strive to reach an agreement that all can accept, even if the agreement constructed is not their first choice. Moral compromise is often necessary, especially in situations of factual uncertainty typical in long-term settings, legitimate ethical differences, and the need to continue working together (Goodstein, 2000). It might call for a narrative approach (use of personal stories or interpretations: See Case Study 14.1) in which participants try to understand the values and motives of all the people involved and devise an answer that responds to these often different perspectives and values. There is less certainty about right and good actions than common introductions to ethics and aging might suggest. Finally, in the tradition of feminist scholarship, a critically based ethic “links conclusions about how to live with attempts to put those conclusions into practice” (Nussbaum, 1997, p. 208), thus joining the political and the ethical (Lloyd, 2006).

JOURNEY TO THE PRESENT: AN OVERVIEW AND CRITIQUE OF ETHICS AND AGING

For older people, ethical work that has been undertaken during the past two decades has placed certain values at the forefront; for example, in the long-term care setting, this involves values about keeping confidences, telling the truth, and respecting older people as important decision makers in their own lives. The principle of autonomy, or self-governance and self-direction, most often serves as the preeminent value, enacted in the practice setting through informed consent. Discussed in the text that follows, autonomy and informed consent can retain their importance as values, but they are being reinterpreted in the light of a different understanding of what it means to be an older resident or staff member in a long-term care setting and the role of families in decision making.

For generations, the moral point of view—one that was detached, universal, impartial—remained unchallenged. It was at the heart of ethical theories that are now so familiar—Kantianism, utilitarianism, and the social contract, but most familiar, it gave rise to the principlism or “doing ethics” using four principles—autonomy, beneficence, nonmaleficence, and justice—that have played such an important role in the evolution of the field (Beauchamp & Childress, 2001). “Doing” ethics was organized around the notion of an ethical dilemma, in which values conflicted and the possibility of a solution was promised (Jennings, 2006). Ethical analysis or ethical consideration of an issue or problem focused on patient competency and self-determination; on the nature and limits of caregiver obligation; and on threats posed by professional paternalism, institutional self-interest, and the imperatives of high-tech medicine. Though efforts were made to address the demands placed on others as the result of patient or client choices, in practice, client choice reigned relatively unchallenged (Collopy, Dubler, & Zuckerman, 1990).

As experience would show, this impartial, universal, and largely individualistic approach to “doing” ethics was not well suited to address “household” issues, problems that arose in the everyday worlds of older people, family members, the community, and long-term care settings. Household issues for residents and staff in long-term care settings included who was to care for whom, what to do when family members disagreed, or what to do when the responsibility for care fell completely on one person. Principlism did not account for the moral claims of caregivers or for moral obligations that transcended decision making, including meaning making and identity preservation. Nonetheless, this mind-set carried a particular authority to engage in ethical analysis, which meant applying relatively few abstract principles and the rules derived from them, such as confidentiality or truth telling, in specific situations. In many ways it makes sense to order, weigh, or reconcile conflicting values and interests held by individuals who are autonomous, rational, and competent individuals (Cole & Holstein, 1996). This focus on the individual, although a welcome antidote to paternalism (or behaviors by an individual, organization, or the state, which restrict the autonomy of a person or group because of a perceived best interest), has meant that far less attention has been devoted to changing the context, such as public policies that limit choices that are possible, than on encouraging the older person to choose within those limits (Capitman & Sciegaj, 1995; Lloyd, 2006). An activist agenda that focused on modifying the social or economic conditions that made actual autonomy (Agich, 1990; Kittay, 1999) very nearly impossible for large numbers of older people in long-term care settings took second or third place to the narrow understanding of choice that prevailed.

Another difficulty was that the “subject” of traditional ethical thinking—an older adult freely able to choose his or her obligations and needing protection from the interference of others—differed dramatically from the “subject” of long-term care, most often, people whose infirmities and complicated lives embedded them in multiple relationships that both mattered to them and affected them deeply. Because traditional ethics offered no account of dependency or vulnerability and the moral relationships that these human conditions called for, much that is ethically important for the actual people in long-term care settings received little or no attention. Instead, the focus on free and equal moral agents obscured “the moral significance of our day-to-day relationships, ones that are frequently involuntary and unequal and thus [we have] failed to see how those attributes apply in the … wider society” (Held, 2006, p. 13). Problems that arise in long-term care—dependency, vulnerability, daily relationships of care, and unavoidable unequal relationships—are real and cannot be evaded in efforts to reverse the once-dominant decline and loss paradigm. More appropriately, “doing ethics” as understood from a feminist ethics approach, confronts head-on the moral dimensions of the frailties and dependencies that are often unavoidable conditions of advancing age.

It is not surprising that, the individualistic notion of autonomy was, in time, extended to people who had lost decisional capacity. Through assigning decision making to a proxy, individuals, at least in theory, were able to extend their autonomy until they died (see critique of advance directives in Holstein et al., 2011). In practice, many older people in long-term care settings do not focus on their own autonomous choices but remain deeply concerned about their families, worry about being a burden, and often want family decision makers to decide in ways that are good for them too (High, 1988, 1991). Older adults want some say in the broad goals of treatment but not necessarily control over individual treatments. Yet, the focus on individual autonomy, defined as self-governing choice, has often led health professionals to view families skeptically, as less than trustworthy transmitters of the interests of their loved ones (Levine & Zuckerman, 1999). The problem, however, seems not to be selfish concerns for themselves but rather deep confusion about what to do when physicians present choices that are potentially beneficial.

In the United States, The Retirement Research Foundation’s ground-breaking initiative Enhancing Autonomy in Long-Term Care, launched in 1984, almost single-handedly defined the work to come. Researchers uncovered multiple ways in which nursing homes disregarded client/patient autonomy (Lidz, Fischer, & Arnold, 1992). Collopy (1988) contributed a fine-grained, conceptual analysis of autonomy, particularly recognizing that an individual’s inability to act on his or her choices did not mean denying the right to choose. In what remains a classic account of autonomy in long-term care, Collopy called attention to issues that are still inadequately addressed, such as the interrelation between competency (or incapacitated choice) and autonomy, the right to be left alone against the need for positive action that makes real choice possible, and the distinction between short-term and long-term autonomy.

One result of the new thinking is that American nursing homes now post a Patient Bill of Rights. They less often address the companion piece—responsibilities of living in the closed and intimate communities of long-term care. Admissions agreements are improved (Ambrogi & Leonard, 1988), and patients are invited to participate in “care planning.” In community-based care, autonomy is also the most frequently articulated value. This commitment sets the stage for common ethical conundrums, such as individual choice versus safety, causing Kane and Levin (2001) to ask how one avoids interfering with life goals while meeting one’s professional obligation to promote health and safety. As they observe, the “rights of a consumer to take informed risks are modified by the moral, legal, and regulatory responsibilities of health professionals and care organizations” (Kane & Levin, 2001, p. 221). In an effort to address these concerns, strategies for assessing risk were developed (Fireman, Dornberg-Lee, & Moss, 2001) while negotiated risk agreements (Kane & Levin, 2001) permit facilities, usually in assisted living options, to protect themselves from litigation while granting considerable freedom to individuals.

The preceding text suggests that a gap in ethical thinking exists in the area of “self-neglect.” Such dilemmas pertain to the person who seemingly—and often dangerously—disregards his or her well-being but refuses any intervention. The standard response has been that if the person has decisional capacity, beyond trying to persuade him or her to accept help, a social service provider must accept the choices the person makes. This issue requires further study and analysis, focusing on compromised capacity, longer and shorter term autonomy, long-term care choices that we actually have to offer people, and the role of emotions, such as compassion in working with an individual to determine the most appropriate action, all things considered. In an effort to address the seemingly unbridgeable divide between paternalism and autonomy (one way of framing the situation of “self-neglect”), Kittay (1999) suggests a common search for goals that both the patient/client and the provider can agree on, thus linking these two seemingly contradictory features of patient care. This insight provides an opening to think about “self-neglect” so that our moral intuitions about avoiding harm can be reconciled with our commitment not to act paternalistically (see Holstein et al., 2011).

Relationships between families and their older adult members have received valued attention in the past 10 to 15 years. Despite their deep reliance on autonomy, many ethicists acknowledge that important decisions happen in dialogue with others. Hardwig (1990) has pushed this position the furthest by arguing that family members have equal rights with the older adult. Others (Blustein, 1993) have adopted more modest stances, for example, recognizing that decision making, especially health care, involves moral dialogue, which relies on one’s moral community and especially one’s family (High, 1991); families are much more than the purveyors of the patient’s wishes and preferences (Arras, 1995). High (1991) has convincingly argued that families’ interests matter; hence, they ought not be dismissed on conflict-of-interest grounds.

This recognition of the family extends to an older adult’s end of life. An older adult’s decision to die at home rather than in a long-term care setting rarely affects him or her alone. How can the interests of all who may be involved intimately in the older person’s life be taken into account? (Ellingson & Fuller, 2001; Kuhn, 2001). What would an ethics of accommodation rather than an ethics of autonomy (Levine & Zuckerman, 1999) look like if it were to account for older adults, families, formal caregivers, and communities? What would it mean to see the relevant stakeholders—the older person, family members, health and social service providers—in a single vision, all included in deciding what to do both preventively and reactively (McCullough & Wilson, 1995).

Using a “preventive ethics” approach (i.e., anticipating what might come next, not “preventing” ethics), key stakeholders, including the older person, meet regularly to decide on courses of action that are open to regular adjustments in the fluid situation that so reflects long-term care. Negotiated consent, characterized by the “clash and balancing of competing interests” (Moody, 1992), may be the most suitable approach when no one interest stands out and when love and compassion become more significant than autonomy. This view contrasts with the more dominant individualistic, procedural approaches to questions about death, dying, and medical care decision making (Moody, 1992). This dominant view did not offer many challenges to the medical context and the policy apparatus that supports hospitals and medical care. Changes did occur, but they were generally narrow ones that addressed relationships between physician and patient and between social service professionals and clients. One result is that informed consent became the central way in which autonomy was enacted in the medical setting, often with the emphasis on consent rather than on adequate information to make the choice informed. Later, as language transformed the patient into the consumer and then the customer, without any analysis of the moral significance of these changes, medicine morphed into a contractual relationship between putative equals. This assumption meant that unrecognized and unacknowledged power relationships were left intact and thus their effects went unaddressed. It also permitted busy nursing home staff to adopt a “minimalist ethic” (Fox & Swazey, 1984), one that only adopted, at best, a mere nod to the provision of care that incorporated any resident or family preferences and that suited their training, time constraints, and professional codes.

MORE QUESTIONS ARISE

Kane and Caplan (1990), in their studies of autonomy in nursing homes, found that residents worried less about major decisions, such as termination of treatment, but did worry about the opportunity to make private phone calls or preserve private space for visitors or for themselves. It should be no surprise that privacy, a feature of our status as adults, is what is often missed the most in nursing home life (Ray, 2008). Agich (1990) redefined autonomy so that it reflected the desire to live in habitual ways and to maintain or remake a sense of self in spite of loss. Accepting that the loss of functional capacities created unavoidable dependencies on others, Agich affirmed that these dependencies did not necessitate the loss of the chance to continue to live in familiar ways. By focusing on interstitial autonomy, he acknowledged “the essential social nature of human development and recognize[d] dependence as a non-accidental feature of the human condition” (p. 12), a point that has been further developed by feminist philosophers (Kittay, 1999; Parks, 2003; Tronto, 1993). This understanding of autonomy regards individuals as concrete and not generalized others (Behabib, 1987) for whom choice is not an abstractly given right but rather a meaningful instantiation of identity. Given this understanding of actual autonomy, to respect individuals means that “we attend to their concrete individuality, to their affective and personal experiences” while also learning “how to acknowledge their habits and identifications” (Agich, 1990, p. 14). In the context of long-term care, it means, to start with, that we offer not merely choice to people, but meaningful choice. These enlarged ethical obligations and the practical demands on caregivers affirm the notion that the good precedes the right. The right to choose is meaningless in the absence of an idea of the good and the possibility to realize that good. Yet, for people in long-term care settings, rights are granted without assurance that they will be able to live their version of the good life. One might take a simple example—when a lifelong vegetarian is offered a choice between a hamburger and a pork chop, it is not a meaningful choice; in fact, it is not a choice at all.

That we live our lives coherently and purposefully matters at any age. For many older people, the effects of chronic illness and the social devaluation that accompanies frailty and inactivity threaten what Taylor (1984) described as “horizons of meaning” (i.e., that which tells us that certain ways of life are deeply preferred to other ways of life). The search for a viable self in conditions of frailty and dependency demands an openness to respond to ethnic, racial, and religious values.

LONG-TERM CARE AS A SPECIFIC CONTEXT

The paradigmatic approach to addressing ethical problems developed in acute care settings. In the 1980s, this approach carried over to the very different long-term care environment, where its suitability is questionable. From micro issues of individual decision making, particularly with regard to autonomy and safety, to issues related to public policy and social justice, justice within families, and the moral implications of vulnerability and dependency, the realities of long-term care created unique moral demands.

VULNERABILITY AND DEPENDENCY

In a Western society devoted almost single-mindedly to freedom, independence, and control, vulnerability, a situation that implies some, if not all, loss of control and power over many circumstances of our daily lives, is an outlier. To be vulnerable is being far removed from the conditions in which familiar views of autonomy operate. In long-term care, a more ancient moral concern, once raised by Socrates, about how to lead a good life may be more relevant in long-term care settings. Hence, a difficult question for our society is how to make that question relevant in conditions that are opposite from those most valued. How can we provide a context in which an individual can find meaning when he or she is unable to live up to the social ideal of independence? To develop a rich account of ethics and aging requires us to think “deeply and candidly” about what equality and dignity mean in the “light of the full range of common conditions of ability and incapacity, immaturity and decline, symmetry and reciprocity that are part and parcel of human lives” (Walker, 2003, p. 16).

If we do not address these questions in long-term care, we risk isolating residents who are dependent and vulnerable, setting them apart from the strong who will give care without necessarily caring. The feminist ethic of care mentioned earlier embraces a basic value—that “proper care for others is a good, that humans in society should strive to enhance the quality of life in the world so that people can live as well as possible” (Tronto, 1995, p. 142).

In the United States, public support for long-term care has been historically located in the welfare sector. Even though, today, Medicaid pays 42% of the costs of long-term care (primarily financing institutional care, although that emphasis is gradually shifting), programs that serve clients and families are generally starved for resources. Long-term care is generally privatized and basic, delivered primarily by family members and low-wage workers (Player & Pollock, 2001). Attention to tasks and to hours of care makes it difficult to attend to the meaning-making activities that clients may care about above all. Hence, choice is often limited to selecting one home care agency over another or, in some circumstances, using a cash voucher to hire a care worker. Most often, such a choice is limited because the potential user of the service has little information about the agency or individual who will be caring for him or her in the most intimate of ways. This observation illustrates the focus on the choice and not on the information needed to make that choice informed.

This narrow view of autonomy elevates the distinctions that arise from class position. Individuals able to pay privately can, if they have sufficient resources, ignore the incessant attention to the “clock” and hours of care provision and seek the execution or delegation of meaningful choices. As Agich (1990) reminds us “being able to identify with one’s choices is a prerequisite for true autonomy” (p. 15). Though an older adult may have lost control over bathing or dressing, if one has the resources, he or she can have some control over how much help she gets and from whom. For these individuals, within the limits of their physical and cognitive functioning, the opportunity to continue developing and expressing their individuality can continue. It is far less possible if one relies on public programs.

For those reliant on publicly funded assistance, overburdened family members and poorly paid caregivers are unable to care in ways that go beyond the instrumental. Ethical values, such as attentiveness, responsibility, responsiveness (Tronto, 2001) or competence, compassion, and care, are difficult to enact. When the provision of instrumental care is deemed acceptable, it becomes particularly difficult to find a listener for stories that facilitate the construction and the reconstruction of identities threatened by loss and change. A relational view of autonomy reminds us that identities can be remade and recreated through the relationships that have given meaning to our lives. Hence, if we accept a richer view of autonomy than the conventional one, we also accept the social nature of the self and the obligation to create opportunities for people who have long-term care needs to find a way to live that supports and sustains their identities. It deepens our moral obligations to include support for maintaining these essential parts of the self. The classic view of autonomy demands much less of health and social service providers because it doesn’t require attention to the contextual supports that a relational view of autonomy would demand.

Long-Term Care as Woman’s Work

People needing long-term care share another feature of their lives: they are most often cared for by women family members who provide three quarters of the care in the community. Some older people also receive care from paid home care workers, about 99% of whom are women. Wages are low and benefits few. Such care provision is essentialized and billed as “natural”; their work is simultaneously praised and demeaned (Abel, 1991; Twigg, 2004). The primary care receivers are most often also women. For most families, choice is a myth. There is no free choice. Choice seems nonexistent if men are not called on to make comparable choices. Having fewer acceptable reasons for not giving care than do men, women are judged for not providing care (Holstein, 2007). The fact that women do the bulk of caregiving in Western societies disadvantages them in the moment and in the future, as caregivers are unequal to those who do not provide care (Kittay, 1999) and have fewer opportunities to make autonomous choices for themselves. Their careers are often interrupted, wages and future pension benefits are sacrificed, and the risks of poverty in old age are substantially increased. Caregiving places them at serious disadvantage to men, a disadvantage that accumulates over time (see Holstein, 2015).

Yet, women (and many men) are devoted caregivers, insisting that “no one can do it as well as I can.” They provide care even if prior relationships were stormy or even abusive. This says something about the power of filial obligation (Brakeman, 1995). It also says something about the inadequate provision of care by the state. In the United States, the care provided by family members, if translated into dollars, amounts to over $300 billion a year (Arno, Levine, & Memmot, 1999). The burden has increased as the state has sought to save public dollars. “Cost containment … is largely the shifting of the costs of care to patients and families” (Levine & Zuckerman, 1999, p. 148).

DECISION MAKING AND AUTONOMY

McCullough and Wilson (1995) suggest that “concepts such as autonomy, safety, and independence are drawn too starkly and too abstractly in the bioethics literature to be adequate to the complex and shifting realities of long-term care decision-making” (p. 6). Life situations often change dramatically and in ways that prior experiences may have left the older person ill-prepared to address. Trial and error may in fact be the most effective strategy for coming to understand what one’s values are in new and difficult circumstances (Kuczewski, 1999). Learning to ask for and receive help may be, for many, among the most difficult of value shifts. Autonomy may best be enhanced by working with the person to adapt to what is no longer possible and by creating an environment that facilitates such adaptation. Although often constrained by the instrumental nature of their work or by the clock, caregivers like to support an individual’s value commitments and identifications if only they had the time and if only they felt respected for the work that they do.

Unlike most situations in acute care settings, day-to-day decision making is a central feature of long-term care. The situations are often very complex. Older people and those around them play multiple roles, the possibility for “recovery” is slim, and the long-term future is more likely a deepening rather than an ending of the need for care. This situation differs dramatically from the patient–physician relationship that dominates acute care settings where roles are defined, recovery or at least improvement is the expectation, and the time trajectory is reasonably short. In long-term care, an 83-year-old woman is a client; minutes later she is a mother, grandmother, neighbor, friend. These relationships each have “their own principles that reflect role-specific duties as well as more general concepts that are conducive to mutual self-discovery among the community members” (Kuczewski, 1999, p. 18). Decision making is also complicated and “involves a series of medical, social, and personal decisions, made incrementally over time by multiple decision-makers, rather than a single, well-defined, time-bound decision made, as in acute care, by the dyad of physician and patient” (McCullough & Wilson, 1995, p. 307).

Other features of long-term care further frustrate efforts to apply commonly cited moral rules and principles like autonomy, beneficence, or nonmaleficence. Family relationships are usually decades old, as are the problems. There may be few families that behave in the rational, consensual way that the standard paradigm calls for. The presence of cognitive impairments coexisting with medical conditions further complicate decision making while “safe” accommodations are often experienced as overly regimented and unable to respond to habitual ways of being.

Moreover, although there is a tendency to focus on moments of choice—moving to a nursing home, terminating treatment, violating confidentiality because of perceived danger to the resident, telling the truth to a patient or honoring a daughter’s wish not to take away her mother’s hope—in fact, the actual process of providing long-term care involves a continuum of constantly arising ethical concerns. How we give a person a bath, the respect we show (or don’t show) for the old body, the dignity enhancing (or eroding) ways in which we talk and listen to the older person are all ethical questions that inevitably arise. Long-term care involves relationships, gratitude, reciprocity, love, and fairness, and so it is, above all, about morality.

Despite all these complications, decisions need to be made and actions taken. It is critical to facilitate the process of self-discovery and to identify the range of morally permissible actions and practices (Jagger, 1989). Rather than a resolution, such as terminating treatment for a dying patient, situations that arise in long-term care require “sensitivity, flexibility, discretion, and improvisation to find precisely what responds to the very particular” (Walker, 1992, pp. 28–29). McCullough and Wilson (1995), as noted earlier, recommend a process they call preventive ethics. By anticipating what might come next, all stakeholders are better prepared to respond appropriately. In this model, one:

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