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New directions in nursing home ethics.

New Directions in Nursing Home Ethics

Nursing homes can be frightening and depressing places. They remind us of our own mortality and of the inevitable time when most of us will face the frailty, ailments, and incapacities of old age. At the same time, nursing homes are places of refuge and respite; essential places to which exhausted families turn when they can't manage at home and when adequate community support is unavailable or unavailing. For some residents, too, moving to a nursing home represents escape from the loneliness, isolation, and danger of a solitary house or apartment. It means return to a social setting and a community of care and concern. Nursing homes are places to go home from--and many do. They can also be--and are--places people go home to.

How can we best make sense of the deep ambivalence, even the antipathy, that so many in our society feel toward nursing homes? How can we articulate a positive and constructive vision of the nursing home as a community of caring and a habitat that facilitates and nurtures the good living of the end of a life? To answer these questions we believe it is necessary to rethink some of the most common assumptions and orientations now applied to nursing homes in the regulations we impose upon them and in the ethical standards we ask them to meet.

First, we need to rethink the concept of autonomy, so central to bioethics in recent years. In the nursing home setting, because of the kinds of physical and mental limitations most residents face and because of the social functioning of a nursing home as an institution, autonomy and dependency cannot be seen as opposites. Instead, they must be seen as intertwined facets of one's life and one's state of being. Similarly, autonomy and community must be made mutually compatible in a nursing home setting if we are to get a full and realistic moral purchase on how life is actually lived there.

Second, we need to consider the difficult problem of justifiable limitations on individual freedom of choice and the institutional management of behavior. Problems of this type simply come up differently and have a different feel about them in a nursing home setting than they do in the acute care context, or in most other spheres of social life. And they come up every single day.

Finally, we need to reconsider the basic directions and purposes of our public and regulatory policies concerning nursing home care. There is a growing awareness that an exclusive focus on protection and adversarialism in nursing home regulation is sometimes self-defeating. The policies and the means of their enforcement can create such defensiveness and rigidity in nursing homes that what should be the common goal of everyone involved, namely, the well-being and care of individual residents, gets lost in the process.

Historical Roots

The history of the modern nursing home has harsh beginnings, dating back to the nineteenth century almshouses and poorhouses that sheltered the destitute elderly. These institutions were places of both asylum and detention, housing a diverse population of the poor, the chronically disabled, and the mentally ill. Mid-nineteenth-century morality tended to see poverty and disability, even in old age, as signs of an undisciplined, improvident, even profligate life. The harshness of the poorhouse and the social stigma attached to it were intended, therefore, to be socially therapeutic, prompting citizens to be provident for their old age and to avoid, at all costs, the bleak harbor of public dependency.

Despite their punitive morality and grim physical conditions, poorhouses remained the primary institutions for the dependent elderly well into the twentieth century. Even though, near the turn of the century, churches and benevolent associations began to sponsor private old age homes, the number of elderly seeking refuge in county or municipal poorhouses continued to rise. Between 1880 and 1920 the proportion of poorhouse residents who were elderly rose from 33 percent to 66 percent, and during this time the poorhouse acquired an added, xenophobic stigma as immigrant inmates increased. In Thomas Cole's words, "By the end of the century...the poorhouse had evolved into a dumping ground for the isolated aged and infirm, a place for the destitute pauper to die. Almshouse superintendents and staff generally assumed that the majority of the inmates were unworthy--that is, chronically and illegitimately dependent on the state."

In the early decades of this century, state mental hospitals seemed initially to be better alternatives to the poorhouse--at least for the mentally incapacitated elderly. But mental hospitals soon proved to be dubious, if not dire, settings for elderly who suffered from the various dementias associated with aging. (Decades later, the deinstitutionalization movement would face the daunting task of finding more appropriate care settings for the large numbers of elderly "inmates" who roamed the corridors of the state hospitals.)

The period of the Great Depression saw a massive increase in the numbers of dependent elderly and, at the same time, a major breakthrough in care for the elderly through Social Security and other legislation that powerfully shaped the emergence of the modern nursing home. Although the Social Security system did not directly fund institutional care, it did provide fiscal resources to the elderly, enabling them to escape public dependency and to become "consumers" of long-term care services--a development that led to the growth of "proprietary" or for-profit homes for the elderly. In addition, Social Security in its early years did not provide payments to the elderly in public institutions--an exclusion that contributed crucially and purposefully to the demise of the county poorhouse. In the postwar period, federal legislation supporting hospital construction was expanded to include voluntary (nonprofit) nursing homes and, in time, proprietary nursing homes as well. Beginning in 1950, government funding for nursing home care steadily increased, culminating finally in the 1965 Medicaid program, which now covers more than 40 percent of all nursing home costs. At the same time, the role of nursing homes was sharply defined by developments elsewhere in the health care system. As hospitals increasingly specialized in short-term, acute care, nursing homes were more clearly defined as places for long-term care, especially of the elderly. Through the late 1950s and 1960s the role of nursing homes was also shaped by the deinstitutionalization movement that resulted in the discharge of large numbers of the elderly from mental hospitals. The result was further definition of the nursing home as a specialized institution--in this case for the care of the elderly who suffered from dementia and who could not be cared for in the community.

By the 1960s, then, the nursing home had emerged as the clearly recognized institutional setting for long-term care of the elderly. Through the next two decades, however, there were constant revelations of scandal--substandard and negligent care, outright abuse of residents, and a wide range of fiscal malfeasance, from embezzlement of residents' assets and extortion of money from families, to vendor kickbacks and reimbursement and capital finance fraud. While stricter government scrutiny and regulation has done much in the last ten years to rectify these abuses, the negative image of nursing homes persists, fueled by examples of "worst case" care that continue to come to public attention. In terms of enduring cultural image, the nursing home industry (even this frequently used designation has a pejorative resonance) still carries the taint of earlier institutional forms--the poorhouse and the commitment of the "senile" elderly to mental hospitals.

Even on the positive side, the government funding that has flowed to nursing homes over the last thirty years has often carried the priorities and reflected the fiscal pressures of the acute-care system. This is particularly true in today's cost-contained health care system. Reimbursement to nursing homes has become increasingly tighter and tied to high-care patients. The resulting "medical model" that comes with reimbursement overshadows psycho-social definitions of care, pressing the nursing home to be more a hospital manque than an institution trying to be a home. In short, the modern nursing home suffers not only the stigma of its institutional predecessors and past scandals, but the strain of existing on the margins of a massive, often alien, health care system. For the foreseeable future at least, this means a continuing struggle for the nursing home community to posit a more accurate, balanced, and autonomous definition of itself.

Present-Day Nursing Homes

and Their Residents

At present there are over 19,000 nursing homes in the United States (approximately 75 percent of them proprietary, 20 percent nonprofit, and 5 percent government-operated). The annual cost per resident in these homes ranges from an average of $28,000 in the northeastern states to $20,000 in the south. About 51 percent of such costs is paid directly by the elderly and their families; Medicaid covers about 44 percent, Medicare less than 2 percent, private insurance about 1 percent, and other government sources the rest. The small amount of coverage from Medicare and private insurance means that nursing home care is now the largest single health care cost paid for "out-of-pocket" by the elderly who do not rely on Medicaid. Facing such catastrophic costs, about 90 percent of the single elderly deplete their financial resources within a year after entering a nursing home; 50 percent of elderly couples face such depletion six months after one of them enters a nursing home. It is at this point, after "spend-down" to poverty levels determined by the individual states, that the elderly become eligible for Medicaid coverage of nursing home costs.

The number of elderly navigating these fiscal straits is already significant: 2.3 million now reside in nursing homes during the course of a year. With the continued aging of our population, this number is projected to increase by 75 percent over the next thirty years. In quick, calculable terms, this means that one in four individuals surviving to age sixty-five can expect to spend at least some time in a nursing home. The amount of time will vary--from short, recuperative stays to residency that may be permanent, extending months or years to the death of the individual. These statistics indicate the significant likelihood of nursing home placement for many of us, and when we factor in the shifting, highly "fluid" quality of the institutions in which we will be placed, it is not difficult to see why the nursing home is such a fearful and perplexing prospect.

The age of elderly nursing home residents ranges from sixty-five to one hundred and over. Average age has been increasing and is now about eighty-four, reflecting over the last decade a steady aging of our population that will intensify well into the middle of the next century. In terms of health status, nursing home residents generally suffer significant functional impairment and therefore need help with one or more activities of daily living--or ADLs, as they are called. Impairments in vision, hearing, and speech are common among residents, as are cognitive impairments. Approximately 63 percent of nursing home residents are reported to suffer from loss of memory or disorientation; about 47 percent suffer from serious dementia or organic brain damage. In terms of social and demographic factors, the majority of nursing home residents are women (only 25 percent are male) and widowed or single. They are also poor--either upon admission or as a result of a postadmission spend-down of resources to meet the high cost of care.

Cultural Image

The ethical status of nursing homes is deeply affected by their cultural image. To the understandable dismay of those who study nursing homes or serve on their staffs, the popular image of these homes is often highly resistant to the basic facts about the frail elderly and their care. For the culture at large, nursing homes still summon up notions of neglect and abandonment. They still bear the taint of their "poorhouse" past and the pre-Social Security image of the elderly as an impoverished, dependent, socially stricken group.

This negative image is reinforced by some deep-seated cultural values. For a society passionate about personal independence and self-sufficiency, nursing homes are too easily seen as habitations for diminishment and dependency. For a culture that prizes curative medicine and the dream of "youthful aging," nursing homes are places of intractable, therefore intolerable, frailty. For a culture with deep anti-institutional biases and often romanticized versions of "family" and the freedoms of "home," nursing homes are especially suspect. They are "total institutions" where personal freedom, privacy, and range of choice have little chance. It is no surprise, then, that our general cultural wisdom warns us to avoid the nursing home at all costs.

This negative image is powerful not only for the elderly but also for families who face the pain and stigma of "institutionalizing" one of their members. Here the negative image of the nursing home is reinforced by cultural expectations that families should always take care of their frail elderly. Such expectations are based on spousal and filial obligations, on the special relationships and ties of family life, on the priority of private over public responsibility for the elderly. Beyond notions of obligation, deeper impetus for such care comes, of course, from shared lives and burdens, from familial concern for the autonomy, dignity, and happiness of its elderly members, from a sense that the dependencies of frailty, like those of childhood, are best sheltered and supported in the "close" of the family.

But the cultural expectations nurtured by these values can produce a kind of moral aversion to nursing homes as places for "putting away" an elderly family member. Thus, nursing home admission is equated with familial abandonment, and the relatively full rosters of most nursing homes is proof of yet another breakdown of the family in the United States. Despite numerous studies that point to heavy care of the elderly as the norm in family relationships, the fiction persists that families continue, in large numbers, to "abandon" their elderly to nursing homes.

Here the gap between social reality and cultural image yawns wide. Family abandonment of the elderly is simply not the primary pattern in the United States. The typical nursing home placement is one in which family members painfully seek institutional care because their own care-giving capacities are inadequate or exhausted. Most families find themselves backed against the wall of last or only resort when they approach a nursing home. In fact, the burdens borne by families, the guilt and confusion sown into their lives by nursing home placement, indicate that the primary moral issue is not one of abandonment but the morally more perplexing one of determining the limits of family obligation to care for the elderly.

As long as the myth of family abandonment endures, however, nursing homes will be seen as places of dereliction. Moral pessimism about such care will remain deep seated, and avoiding the nursing home will continue to be the controlling, often uncritical, dictum for the elderly and their families. Unfortunately, such pessimism meshes all too smoothly with fiscal policies designed to keep the elderly out of nursing homes primarily for cost-containment reasons. It also reinforces the ageist bias that sees disability in later life as decimation and sad denouement. From such a perspective minimalist goals are enough. Keeping the elderly out of nursing homes is sufficient--despite the lessons we might have learned from experiments in deinstitutionalizing the mentally ill.

Eliminating inappropriate institutionalization of the elderly, especially in the face of mounting health care costs, is surely a morally, socially, and fiscally defensible goal, but if nursing homes are subjected to a general principle of avoidance they are doomed to be places of limited, if not parched, possibility. If nursing homes are seen only as a last, lamentable resort for the care of the elderly, then they will in effect be the Bedlams of our aging society, however technologized and over-regulated we make them. There will be little enthusiasm in the public mind or in the mills of policy to define the "good institution," to recognize what human ends and needs the nursing home irreplaceably serves. Neither as individuals nor as a society will we develop a positive consensus about when and for whom nursing home care is really the best option, or how, for some individuals, institutional care can best sustain the last of life. Instead we will struggle to avoid these institutions, continue to fund them publicly only for the impoverished, and regulate them adversarially--because we have declared them essentially places of incapacity and abandonment. Those who live and work in nursing homes may know the reality of the good institution, but their experience runs against the grain of the cultural image and against the dominant priorities of the health care system.

The Perplexities of Nursing

Home Access and Placement

Confronting decisions about institutional care, the elderly and their families must contend not only with our culture's near taboo against nursing homes, but also with the pressures and complexities of the health care system. Over the last five years, Medicare's prospective payment system has effectively shortened the hospital stay for elderly patients. While this has led to cost savings in acute care, it has done so through "quicker and sicker" hospital discharges of the elderly. As a consequence, pressures have intensified on hospitals, as well as on the elderly and their families, to find adequate, often high-level, long-term care. In many areas of the country the number of nursing home beds has not kept pace with the growth of the elderly population. Moreover, Medicare and Medicaid coverage of formal home care services is tightly rationed; private payment for these services can be prohibitively expensive; and many families exhaust their own fiscal and other resources attempting to provide care themselves.

These systemic pressures drive the elderly and their families, as well as their care providers, into placement decisions that are short on time and options. In hospitals, decisions about nursing home care can be hurried--and harried--as Medicare's DRG clock runs down on a particular patient. In home care, family caregivers can find themselves at the brink of a placement decision because their elderly family member suddenly needs a higher level of care or because their own capacities to provide care have reached an inevitable, though perhaps long denied, point of burnout. Time, is, of course, not the only restricting factor in such decisions. The health care system, operating with limited resources and deeply biased toward acute-care priorities, does not provide a solid continuum of care. It cannot offer a variety of institutional settings for chronic care plus a full range of community-based care services.

In the absence of this continuum many elderly have few options when they face the imperative of hospital discharge or when they find that the care available at home is no longer adequate. The number of nursing home beds is tightly limited, and access to these beds is further restricted by the specific level of care and the specific modes of payment and reimbursement to which they are tied. As a result, for all but the wealthiest elderly, a placement decision means facing the bureaucratic entanglements of Medicare and Medicaid coverage: confusing eligibility and copayment requirements, varied patterns of coverage, the difficulty of matching one's needs to the availability of a "Medicare bed" or a "Medicaid bed," complex rules about spend-down of fiscal resources as a requirement for coverage, and other requirements that can make nursing home admission a warren of confusion.

Under these pressures the "choice" of a nursing home is often far less than an autonomous weighing of options. In many instances, choosing a home comes down to finding one in what is distinctly a seller's market. Placement under such conditions turns what is in any case a difficult decision into a moral straitjacket. In desperation at finding any placement, elderly individuals can, in fact, find themselves signing admission agreements that restrict their rights to make health care decisions, to exercise autonomy in their daily living and financial arrangements, or to be informed of basic state and federal statutes regulating their care.

Over all of these difficulties falls another shadow--the fear of impoverishment. For any prolonged nursing home stay it is likely that Medicare's relatively limited coverage will run out, that the elderly individual's own resources will be diminished, perhaps wholly swallowed by the high cost of nursing home care. The need of care that induces penury is one of the most fearsome aspects of nursing home placement for the elderly. It is also one of the most caustic social elements in our health care system. Despite constant calls for full, system-based attention, our health care policy continues only to tinker and make partial adjustments in longterm care, often with the goal of shifting costs to private parties and lessening the pressures on state budgets. As a result, Medicare coverage of nursing home care remains highly rationed. Medicaid coverage varies considerably from state to state and generally provides lower per capita payment to nursing homes than Medicare. This prompts homes to admit residents on the basis of the case mix most profitable to the home, and perhaps encourages a lower level of care for Medicaid residents. It is worth noting again that Medicaid assists many of the elderly only after their financial resources have been spent down and they have joined the ranks of the poor--a devastating route to public beneficence.

The distributive justice issues raised by the spend-down requirement demand analysis far beyond the scope of this discussion. In terms of the issue at hand it can be suggested, however, that existing health care policy reinforces the bleak image of the nursing home. For many of the elderly and their families, emotional antipathy to institutionalization is heightened by pressures of time, limited options, the complexity of the system to be negotiated, and the economic toll that nursing home care will levy.

The system also produces moral perplexity and conflict for providers of nursing home care. Achieving a suitable case mix of private-pay, Medicare, and Medicaid residents is crucial to the fiscal stability of most nursing homes. But that means accepting residents with a sharp eye to their sources of payment. Private paying residents generally pay higher fees, thus subsidizing Medicare and Medicaid residents and raising questions about equity and about "tiers" of care within homes. In addition, Medicare and Medicaid reimbursement rates clearly reflect acute-care priorities. With "quicker and sicker" discharges of the elderly from hospitals, nursing homes are pressed to provide higher and higher levels of care--and reimbursement rates favor these levels of care. Residents needing hightech, skilled, or heavy-duty nursing care bring higher reimbursement than residents needing "custodial" care. This serves as an inducement for homes to accept the large numbers of high-care patients discharged by hospitals under the constraints of the DRG system. As the flow of such patients increases, hospital-like care is becoming increasingly standard in many nursing homes. There is less and less incentive for homes to care for those who were once familiar clients: elderly who may be very frail and unable to manage on their own in the community, but who are not acutely ill.

A large policy issue hides here, one that affects the basic mission of nursing homes and the very definition of institutional care of the frail elderly. Cost containment policies in acute care could in fact transform nursing homes into "subacute care" institutions. If the present pattern of escalating care continues, it is quite possible that nursing homes will, in the future, offer very little "intermediate" and domiciliary care. In short, they will be transformed from long-term care homes into long-term care hospitals. This would, of course, further erode the already thin continuum of care between hospital care and home care, leaving the health care system with few institutions providing assistance in daily living rather than high-level medical and nursing care. Deinstitutionalizing care to this extent would drastically narrow the mission of nursing homes. It would also massively increase the burdens on families, many of whom would have very limited access to formal home care services. Such reduction of institutional care, while it might produce fiscal savings in the health care system, would also bring disheartening social costs.

"Being a Resident": The

Constraints of the Institution

The difficulties of access and admission to a nursing home can foreshadow the more persistent problems that individuals face once they become residents. For many elderly, admission to a nursing home is quite definitely a "placement"--to use the impersonal and passive, but quite common phrase. Placement stands as a clear marker of dependency, a late-life rite of passage announcing loss of capacity and control. Moreover, even for individuals who may have actively participated in the placement process, institutionalization can seem a death blow to autonomy. Even when a nursing home stay is relatively short, it can be a dark omen of what lies ahead as one continues to age. For those who face long-term institutionalization, who see the nursing home as life's last domicile, admission may signal separation, isolation, and rejection; it may summon up images of loss, of a stripped and even mutilated self.

The vey terminology of the nursing home offers some clues to these images. Being a "resident" in a nursing "home" is quite different from being a patient in a hospital. Despite the domestic descriptors, "residency" can prove more fully and finally disruptive than hospitalization. Admission to a nursing home separates one, sometimes permanently, from the personal and social contexts of one's previous life. This home can seem an alien place, filled with the frail and incapacitated, where one's past has no roots or recognition, where one must join others, mostly strangers, in attempting to live a private life in a public place. At its worst this home is thick with contiguity but thin in community. Here, personal choice and social ambit shrink in the midst of unchosen others, in dependency on caregivers whose authority governs even the minutiae of daily life.

The potentially invasive and disenfranchising impact of the nursing home is perhaps best summed up in Erving Goffman's classic account of the "total institution." Total institutions are characterized by their all-encompassing, highly controlled settings and their pervasive authority structure. Daily life in a total institution is tightly scheduled and is organized around "batch processing" of inmates or residents. Managing the daily lives of a large number of persons in a relatively small space with limited resources leads, almost inescapably, to surveillance and control of behavior, hierarchical staff-inmate interaction, and the dominance of routines that serve the institution's efficiency. In its closeting and control of the individual, the total institution acts, finally, as a barrier to the outside world and the previous identities and life activities of its inhabitants.

A simple categorization of nursing homes as irredeemably "total" institutions would be facile and inaccurate. On the other hand, the model of the total institution can be analytically useful. It offers a stark indictment of the poor nursing home and a sharp, if negative, template for the good nursing home. Accordingly, the good home would be one that resists institutional constraint and control, that works against the collectivization of residents, that checks the primacy of the institutional agenda over the interests of residents. In terms of fundamental ethical categories, this would mean a commitment not only to the good care and safety of residents but also to their autonomy, independence, and dignity. At the same time, the good nursing home must respond to counterbalancing values: the common good, the mutual responsibilities of residents, the requirements of equity and justice, the prudential use of limited resources, the obligations imposed by legal and regulatory requirements.

Toward Autonomy within


If DRGs, Medicare, and public policy in general have tended to press nursing homes in the direction of acute care, so too, in its own way, has bioethics. Like public policy, most prevailing ethical perspectives have made the mistake of regarding nursing home care as an extension of hospital care. Like public policy, bioethics has failed to understand that nursing homes can be communities where ongoing managed care is given to some of the most frail, dependent, and vulnerable members of our moral community.

If we are to reorient our society's understanding of nursing homes with a view to changing our behavior, we must first appreciate some of the implications of our most commonsensical ethical assumptions regarding institutionalized long-term care. By exploring some of the ways in which the standard assumptions of bioethics fall short, we can lay the groundwork for a more adequate ethical perspective.

The central figure of the standard bioethical analysis is the competent adult, ill enough to seek medical assistance and to that extent vulnerable, but still essentially at the height of his or her powers. The moral personhood of the individual, the property with which bioethics is most concerned, is not undermined or transformed by illness; it stands apart from the physical condition of the patient. This view rests on an understanding of the body as essentially a container for the self; an animate, dynamic, amazingly complex and wondrous container, to be sure, but a container nonetheless. An individual, virtually paralyzed and physically dependent on total life support, remains no less moral person for all that.

More surprisingly, moral personhood is in some ways independent of the mind as well. For we say that an individual who is permanently unconscious remains a person in the moral sense; the individual's right and protections remain unaffected by the destruction of the brain and loss of the mind, even though the capacity to exercise those rights directly and without assistance has been lost. Thus bioethics places great emphasis on advance directives, thinking that the record of the past voice of the incompetent patient is the best way to respect the moral personhood that still exists before us in the unconscious or demented individual.

In a very real and literal sense, then, the intact moral personhood of the patient presides over the entire ethical analysis of how health professionals and representatives of society--administrators, lawyers, and public officials--should treat that patient. As a moral person the patient bears rights, liberties, and interests that place strong moral (and sometimes also legal) obligations on others to act or to forbear from action as this affects the patient. The values and principles that bioethical analysis relies upon are notions such as rights, liberties, self-determination or autonomy, privacy, doing good (beneficence), not doing harm (nonmaleficence), and justice. These values and principles have different meanings and different implications for the right conduct of others. They often conflict, or at least cannot all be honored to the same degree simultaneously, and so must be balanced. Nonetheless, for all their differences, these various bioethical concepts have a common notion at their core: they are largely designed to ensure the moral person sufficient resources, assistance, and freedom from interference to allow him to be a rationally self-directing being. Bioethics seeks to carve out--even in the face of sickness, curtailment of function, and dependency--the moral space needed for a human being to live her life in her own way.

Two things make this picture of moral personhood and its protection an especially compelling one in bioethics. For one thing, its individualistic assumptions are deeply embedded in American culture. For another, these individualistic assumptions are no less deeply ingrained in the concept of acute care. In acute-care medicine the disease state that medical help is to combat can be seen as a condition thoroughly external to the moral personality of the patient. Disease is a threat that renders the restrictive environment of the hospital setting tolerable--but only to the extent that it furthers the patient's goal of cure and freedom from the disease threat. The acute care setting is by its very nature and purpose a temporary imposition and restriction on freedom.

This makes it reasonable to view the medical setting in thoroughly instrumental terms. Hospitals have no value whatsoever apart from their contribution to the enterprise of healing, at least not from the perspective of the ordinary patient. They are not places we seek out and choose to stay in if we do not have to; they are unpleasant and even dangerous places, to be avoided by the well.

In its advocacy for the moral person of the patient, bioethics constantly monitors and scrutinizes the medical setting, including the behavior of the physicians and other health care providers who act to limit the patient's freedom. The objective of this monitoring is to see to it that the setting imposes only those restrictions necessary to achieve the ends of the treatment plan, and to ensure that the interests of the patient, and not the interests of the caregivers or the caregiving institution, come first. Bioethical analysis can defend the patient's moral person by arguing that medical decisionmaking should be guided as much as possible by a respect for the autonomy of the patient, so that, in effect, the patient can monitor her own care and can legitimize restictions on her liberty by consenting to them. When the patient is not competent, and when his wishes are not known and cannot be reasonably inferred from advance directives, then the patient-centered orientation demands that treatment decisions be made in the "best interests" of the patient, accommodating the interests of others when possible, but overriding them in all cases where there is irremediable conflict.

Our point here is not to reject the advocacy of the moral person, nor to deny its very significant contribution to the protection and well-being of individual patients--to say nothing of its contribution to medicine as an ethical, healing enterprise. But serious problems arise when this framework and its underlying assumptions are carried over without qualification into the realm of nursing home care.

No one who has followed discussions of residents' rights in nursing homes in recent years can doubt that the ethics of acute care have been carried over into the nursing home. Almost without exception these discussions have been dedicated to the protection of the autonomous moral personhood of the resident--a personhood seen as undiminished and fully worthy of continuing respect despite the infirmities and loss of function that brought the patient to the nursing home in the first place. And since the dominant orientation is protection and respect of that autonomous personhood, it follows that bioethics should bring to the nursing home setting the same attitude of monitoring it brought to the hospital setting.

We believe that our understanding of the ethical dilemmas faced by caregivers, nursing home residents, and their families would be improved by a conception of autonomy rooted within community. In contrast to the highly individualistic conception of autonomy now prevalent in acute care ethics, "autonomy within community," as we shall call it, draws on a notion of moral personhood that is not abstracted from the individual's social context or state of physical and mental capacity.

If nursing homes are seen primarily as institutions of support for persons whose aging or chronic illness has reduced their independence and created special needs, then caregiving can no longer be seen as merely a service or external intervention that either threatens or serves the person's interests. For now the caring constitutes the fabric of the person's life. The person depends on that fabric of support, and the reality of the moral situation is that the person must embrace dependency rather than resisting it as a temporary, external threat. Nursing homes must be founded on the realization, so difficult to achieve in American culture, that dependency has a positive and proper place in the scheme of human life. In certain situations of incapacity, autonomy and respect for persons simply come to mean the creative, enabling use of dependency to give richer meaning to the lives of individuals who can no longer be self-reliant.

We believe that a new agenda for the ethics of long-term nursing home care could be set by seeing nursing homes as communities of caring and interdependency. The goal should be not simply to eliminate or minimize dependency whenever possible, but to make a genuinely creative and nurturing use of the dependency that is an inevitable reality for most nursing home residents. Nursing homes are rarely places of curing, but they can and should be places of healing--of making whole--of enabling frail or chronically ill persons to use their dependency to grow as human beings.

Ethics of Community

When we apply this new perspective to the daily details of nursing home life we become sensitive to the often unnoticed, routine blocking, the barely discernible "clotting," of autonomy that takes place in a nursing home. Instead of the typical informed consent "event" or "discrete decision" scenario, the nursing home more often presents a diffuse, ongoing, incremental flow of acceptance and refusal, acquiescence and noncooperation, negotiation and trial. The most characteristic dilemma a nursing home resident faces is not a life-or-death decision, but the pervasive lack of personal control that starts at the door with the traumatic admission and permeates a resident's daily life, ranging from dressing oneself, to eating, to doing what one wants when one wants.

A painful area of broad conflict, routine in long-term care but relatively rare in acute care, is dangerous and disruptive behavior. The close, communal living of the nursing home, complicated by a high incidence of physical frailty and dementia among residents, leads to difficult questions about the control or management of resident behavior. Nursing home staff have a responsibility to protect the safety of all residents, the privacy of their places and persons, the basic order and social amenity of their collective life. This can require a corrective response to the resident who wanders aimlessly and intrusively, who is physically or verbally abusive, or who otherwise pushes beyond the limits of what the group is able to tolerate. Yet staff equally have a responsibility to use the most benign means possible to control or modify residents' behavior. Rigid notions of safety and good order can lead to overly invasive interventions--the most questionable of which, as we indicate later, is the widespread use of physical or pharmacological restraints.

Moral Ecology: The Institution

Nursing homes possess a moral ecology quite different from the ecology of acute care. The setting--the nursing home itself as an institution with its routines and programs, peopled by its residents, family, and staff--makes all the moral difference. In hidden ways, environmental factors subvert autonomy, both individual and communal. The coercive power of the institution where one lives can be more subtle and pervasive than that of the hospital where one only "stays."

The environment necessarily encroaches on individual liberties as one attempts to live a private life in a public institution. Living quarters sometimes amount to a shared bedroom with only a few feet around a bed to call one's own, and no ultimate say over who occupies the next bed. Privacy and space are at a minimum. Insufficient storage areas may require limiting one's possessions, yet the security of even these few personal items cannot be assured.

Public areas are no better. Noise levels rise in common areas as people try to accommodate those with impaired hearing or to override repetitive moans or other din created by confused residents. Compounding these problems, daily life in a nursing home is driven by routines: fixed times for baths, meals, medication, getting up, and going to bed. The nursing home's restriction of personal privacy and freedom is fueled by communal need for operational efficiency and the obligation to foster the ongoing, total well-being of the individual. When it is fueled by external pressures, such as fear of litigation or regulatory penalty, restriction of freedom is more dubious.

When caregivers and residents have long-term relationships that reach beyond medical care into the activities of daily life, the ramifications of refusal and noncompliance are more complex than they are in acute care. Habitual noncompliance or refusal of care may be more a resident's revolt against the institutional environment than a considered judgment about a particular aspect of a care plan. As the staff become more intimately acquainted with each resident and learn to decipher refusal and noncompliance in the light of residents' personal histories, a new concept of autonomy--autonomy within community--can improve the institutional environment and enhance the quality of the patient's life.

Moral Ecology: Residents as

Moral Agents

Too many nursing home residents, functionally impaired, watch in dismay as slowly but surely the physical self-reliance they have always taken for granted evaporates. Residents need more help with one or more basic activities of daily living, such as dressing, grooming themselves, bathing, getting to the toilet, and getting in and out of bed. Control over the little things of life--what to wear, what and when to eat--vanishes.

In addition, where there is cognitive impairment, this diminishes residents' decisional capacity, making even more devastating inroads on their autonomy. In long-term care, much more so than in acute care, questions of mental capacity shape decisions about medical treatment, about the rights of idiosyncratic choice and behavior, about an individual's authority to make even commonplace decisions. The reported incidence of dementia among elderly nursing home residents is far higher than among the general hospital population, but these reports can be read in two ways. On the one hand, they can be useful in guarding residents against potential harm, as they caution staff not to make unwarranted assumptions about a resident's good judgment. On the other hand, reports of high incidence of mental incapacity can foster blanket assumptions that elderly nursing home residents are "generally" or "typically" incapacitated--and that their autonomy should usually yield to the beneficence of caregivers.

Decisional incapacity is, in principle, a warrant for overriding a patient's wishes and for vesting others with surrogate responsibility. For this reason, assessments of mental competence carry massive moral weight. But decisional incapacity is not always a clear matter. Nursing home residents may, for example, experience fluctuating or intermittent competence, a condition that requires careful interpretation and a response that respects choices made in periods of clarity. Similarly, residents may suffer from mental confusion and incapacity that is quite reversible and results from physical or emotional trauma, overmedication, or metabolic imbalance. Cases of this sort sometimes require elaborate monitoring or titration of medication, but these strategies are not standard practice in every nursing home.

Since assessments of incapacity limit the moral agency of residents and effectively disenfranchise them in the decision-making process, it is especially crucial that these assessments not be global, but instead focus on capacity for specific decisions and resposibilities. The resident who cannot manage her finances might be able to decide about major surgery or whom she wants as a roommate. The resident who is visually and aurally impaired might be clear in his thinking, even though he cannot execute his wishes and perhaps has great difficulty even communicating them.

The position taken some years ago by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, that decisional capacity can be determined by an informed layperson's judgments, is especially helpful for long-term care. If assessments of decisional capacity are understood as nonmedical rather then clinical, then their moral nature becomes clear. The assessment of incapacity is the judgment that a nursing home resident is unable to function as an independent moral agent in a specific area of choice and behavior. As determination of incapacity will place at risk significant interests of the resident, there is a real need for cautious, carefully limited, regularly reviewed assessments. Such an approach would be a check against quick "diagnoses" of incapcity based on mental status tests that provide only an initial screening of mental functioning and do not resolve complex questions about the extent or specificity of an individual's capacity. In some cases, neurologic or psychiatric evaluation alone can provide clear assessments of capacity, but the most difficult assessments may require first-hand experience of a resident's decisional style and value preferences, an ongoing relationship that the resident is more likely to have with his daily caregivers than with the specialist called in to make a clinical diagnosis.

Moral Ecology: Family and Staff

as Moral Agents

The involvement of family members in decisionmaking is also more extensive, and takes place over a longer period of time in nursing home care than in acute care. Thus family members can provide substantial help in enhancing the autonomy of a nursing home resident, as well as mediating situations of conflict or difficult communication. But family members can also be overbearing. Sometimes families function as a kind of extended client, to the point that the resident's interests and preferences are submerged by the family's wishes. In more extreme cases, families may step in and simply take control away from the resident. The family's needs and involvement are therefore crucial but clearly complicating factors in long-term care. Sorting out the questions of how many people's wishes must be honored, and whose wishes have priority, is vitally important in long-term care. Just who the client is, and thus to whom obligations are owed, is not always clear in communities defined by ongoing mutual need and interdependence.

The round-the-clock care staff typically provide is not performed chiefly by registered nurses but by a paraprofessional pool that makes up the bulk of the workforce within nursing homes. This paraprofessional workforce--poorly paid, minimally trained, and overworked--confronts the prospect of an evening or night shift with a patient load of fifty to one hundred residents. The staff's vision of what kind of place nursing homes ought to be is often blocked by the demands of routine and the pressures of short staffing. Too little time is available for creative problem solving. Too little institutional support is available to help staff maintain a careful balance between serving the common good of a vulnerable, dependent population and respecting the dignity of each resident.

Vulnerability and Restraint

The moral atmosphere of nursing homes is palpable to anyone who enters one: residents are strapped to wheelchairs by Posey vests, or tethered to beds with soft wrist and ankle restraints, and sometimes with four-point leather straps. The rationale is, of course, that restraints are employed for the residents' own good. The resident's own safety might prompt the use of restraints, as frailty, poor balance, and unattended wandering can lead to physical injury. Frequently, staff employ devices to restrain residents from striking out at other residents. More disturbingly, however, restraints may be used because of institutional fear of litigation, the ready availability of the devices, insufficient staffing, and staff attitudes.

Use of restraints is not infrequent: a 1991 JAMA survey found that as many as 59 percent of patients in nursing homes were in restraints, a percentage almost double that of restrained patients in acute care. In a high percentage of cases of physical restraint, physicians give no written orders approving restraints. Any restriction of movement demands a strong justification. In a free society there is not only a presumption in favor of freedom; there is a further presumption that the burden of proving the need to curtail freedom falls on the party doing the restraining.

The use of physical restraints must be roundly challenged--and the tide is now turning, although it may be washing out some important concerns about the welfare of the community as a whole. Ample evidence indicates physical restraints are generally inappropriate. No one sanctions the rare instances in which restraints are used to punish residents for refusing to obey staff orders. Nor, in the light of medical evidence, can we defend the more frequent use of restraints to protect residents from hurting themselves. Far from protecting patients from harm, restraints inflict it. Physical risks inlcude bed sores, infections, reduced circulation, muscle weakness, pneumonia, loss of appetite, and incontinence caused by immobility, to name but a few. Worse yet, instances in which residents are found hanging dead from the bedrail, strangled by the restraint, are increasingly coming to light. Psychological risks, more difficult to quantify, include humiliation, fear of abandonment, impairment of self-image, agitation, panic, and disorientation.

Common concerns about the legal need to restrain are inflated. Legal liability is based on whether due care was exercised under the circumstances, not simply on whether a resident was injured. In fact, the legal literature suggests that no institution has been successfully sued simply for failure to protect residents. There is no duty ot restrain. Misplaced perception of liability overlooks the fact that a growing number of plaintiffs have sued successfully over the misapplication of restraints.

Questions of effectiveness aside, the use of restraints is open to the criticism that it is practiced on a vulnerable population ripe for abuse. Nursing home residents are sensorially impaired; their dwindling vision, hearing, and speech impedes ability meaningfully to perceive risk or understand the staff's concerns. Likewise, they are less likely to have the ability to communicate objections to being restrained. As if their physical and sometimes mental vulnerability were not enough, nursing home residents are also socially vulnerable. The majority are women, and many are of low socioeconomic standing. In a context of clear power differentials such as gender and class, the use of restraints is even more objectionable.

Critics of restraints assume (correctly, we believe) that our moral obligations entail fostering an environment that helps people to flourish, despite their frailty and illness. To this end, they have provided viable alternatives to the routine use of physical restraints. Alternatives call for an understanding of why residents fall or strike others. Remedies in some cases require reeducating or providing sensory stimulation to adapt confused patients to their environment. The environment can also be adjusted by determining what makes residents want to move, such as drafts or noise. Devices that enhance mobility (including walkers, braces, eyeglasses, and hearing aids) and devices that lessen injury (such as low adjustable beds) must be considered. Providing for the least restrictive environment in some cases means creatively reshaping the environment--recruiting volunteer sitters, or erecting visual barriers such as bright lines at door thresholds.

The practical and moral creativity of finding alternatives to restraints might lull caregivers into supposing that autonomy within the community has been adequately provided for. Those who suggest alternatives to restraints tend to overlook the related, but broader problems of behavior management that cannot be reshaped quite so easily. Residents often wonder when they can go for a walk, or why times for their rising and sleeping are regulated, or why they can't wash their clothes in their sink. External regulations of mundane daily activities, together with the coaxing, badgering, pleading, and other manipulation that is involved in getting residents to take medications or baths challenges any institution to respond creatively to the dependency of its residents.

Physical restraints are at one end of a continuum of behavior management, the other end being the informal and humane manipulation that all people experience. Nursing homes manage behavior inappropriately not only when they use force, but also when they use coercive pressures and schedules, and when they fail to provide at least a minimal range of choices, options, and opportunities for residents. Sometimes the means of control used are patently offensive to human dignity--for example, language and behavior that infantilizes residents. Less blatant are the subtle rewards given for cooperating with the staff and the administration, through informal identification of "good" residents and perhaps through visits from administrators themselves. It may well be these imperceptible and mundane issues that most challenge the mainstream model of autonomy, because they make us refine moral obligations in the light of communal living.

As we suggested earlier, an individualistic interpretation of autonomy yields a bioethics that provides safeguards from encroachments on all liberty. Such a view leaves nursing home staff wondering how to fulfill obligations for the caring necessary for each resident to flourish, no matter how diminished her functional or mental capacity. No one objects to the daily multitude of ways that we convince and cajole others to do what we want, as long as it leaves them meaningful choices. Further, everyone agrees that communal life does not support a notion that "man's home is his castle." Autonomy within community entails a certain whittling away of maximal liberties, which may or may not be justified depending on the community in question.

Such justification can only be given in light of the kinds of places we think nursing homes ought to be. Despite the too-prevalent tendency to see nursing homes as sub-acute care centers, they are homes. Too often we forget--or deny--that nursing homes are places to live. Our homes optimally supply an environment for human flourishing, no matter what disabilities afflict us. In home life, assertions of an individual's autonomy give way, not because of mere subterfuge, but because home life provides a set of goods that cannot be gotten if each resident is completely autonomous. Affirmation of personal worth in spite of physical or mental frailty; a sense of belonging; the assurance that the resident may trust others in the community to safeguard her person and her dignity; the value of interdependence and connection that keeps us all from isolation; the concern for others that translates into practical acts of care for the body--these goods of community are available to its members only if they affirm each other and the common good.

The Paradox of Regulation

Nursing homes today are surrounded by stigma, suspicion, and mistrust. The development of the nursing home industry and all too frequent scandals involving the most shocking kinds of abuse and neglect have inevitably reinforced the negative image of nursing homes. In addition, whether rightly or wrongly, many families feel guilt when they place a frail elder in a nursing home, as if they had abandoned the person or somehow failed to live up to their moral responsibilities. As guilt is a powerful emotion, and as nursing homes have earned some of the mistrust they suffer, it should surprise no one that they are subject to closer governmental scrutiny and more detailed regulation than other health care institutions. In the eyes of many, progressive reform in long-term care requires even broader regulation, with stricter oversight and tougher enforcement. We wonder about that.

There can be no question that there is serious and continuing need for strict regulation, oversight, and accountability. The rights of residents and their families must be protected, high standards must be maintained, and abuses must be detected, punished, and prevented from happening again. Yet at some point, overregulation itself becomes an obstacle to the very objectives it seeks to attain.

The question we would like to pose is what moral approach to take to the problem of nursing home regulation. Will individualistic notions of autonomy and personhood and the associated ethic of protection yield the most insight? Or does this way of thinking about the purpose of regulation in long-term care lead to the same sorts of confusion we encountered earlier?

In general, nursing home regulation is a matter of striking a delicate balance between that degree of control necessary to insure a basic standard of decent and humane care, and that degree of professional discretion needed to allow nursing homes to respond to their own particular problems of care as they make creative use of the dependency that is an essential fact of nursing home life. The balance is particularly difficult to strike when, as happens often, the administration and staff of nursing homes react to regulations in a defensive and self-protective way, looking more to the letter than the spirit of the law, and responding with inflexible procedures that satisfy the regulations but do not fully address residents' needs. Certainly, the blame for this state of affairs cannot be placed solely on the shoulders of nursing home professionals. In many places the attitude of regulators is so adversarial, and the use of administrative threats so heavy-handed, that creative problem solving and cooperation between nursing home professionals and government regulators is virtually impossible.

Can this vicious circle of mistrust and defensiveness be broken? Probably not easily or soon. We believe, however, that a modest beginning can be made if we could shift our understanding of the nature and goals of regulation in the area of long-term care. Because we have not fully developed the proper model for thinking about the kind of place that a nursing home is and should be--it is neither a hospital nor an apartment building--we remain uncertain as to what practical goals should guide regulatory standards and the evaluations that are conducted during nursing home surveys. We are, however, convinced that the perspective must shift from an ethic of protection to an ethic of the creative use of dependency within communities of caring.

As we think about the purpose of regulation, we need to move away from an emphasis on its negative function as a sanctioning, threatening mechanism for extorting acceptable conduct, and toward a more positive view. Regulation should not begin with the premise that, if left to themselves, nursing home caregivers are naturally prone to abusive practices. Nor should it be seen either by regulators or by caregivers as snares and traps set to capture wrongdoers and people of ill will. Instead, regulation should be seen as a tool that allows professionals who are motivated to do the right thing to do their jobs better and more creatively than they otherwise could.

At a minimum, stepping out of the vicious circle of nursing home regulation will require two long strides. The first step involves education and creating conditions for a more positive dialogue between regulators and caregivers. The second step is to professionalize the nursing home industry and to raise it in society's esteem. Only through better training, more adequate compensation, and self-regulation--in short, the marks of professionalization--can nursing home care live down its current dubious reputation.

Finally, as new regulations are devised, we should experiment with a legislative approach that is less intrusive and detailed than what we have now. Policy makers and regulators should set broad guidelines for acceptable practice, as well as providing incentives for good and creative innovations in individual nursing homes. In turn, local administrators should be in much closer dialogue with regulators so that they can fashion specific practices that fit within those broader guidelines. In this approach, we as a society would put considerable discretion into the hands of nursing home professionals, and we would rely on the soundness of the governance mechanisms within specific nursing homes. We need to scrutinize these mechanisms too, to ensure that residents, family members, and the surrounding community are fully represented.

At the end of the day we will never find the imagination and the courage to experiment creatively with nursing home practices and policies until we embark on a far broader and more open public conversation about the positive side of what we want nursing homes to be. The trouble is that we cannot really talk about nursing homes without also examining the values and aspirations we hope to discover in ourselves in the twilight of our lives. Can we summon the courage to look into that twilight and find something to affirm there?

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Title Annotation:Special Supplement; includes bibliography
Author:Collopy, Bart; Boyle, Philip; Jennings, Bruce
Publication:The Hastings Center Report
Date:Mar 1, 1991
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