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The ethics of home care: autonomy and accommodation.

Preface

In the last decade, home care has been of the fastest growing sectors in our health care system. For the frail elderly in particular, home care agencies are now a major source of medical, nursing, and social services. As medicare's prospective payment system prompts earlier hospital discharge of the elderly and nursing home care continues to be scarce, costly, and scantly covered by public or private insurance, more and more of the elderly receive care in the community. "Home" care may sound domestic and low key but it is quietly bearing massive burdern in the health care system, burdern that will only increase as our population ages, dramatically, in coming decades. Clearly, bioethics ought not to bypass home care in a consuming concern with the problems of acute care.

The following report offers an initial exploration of home care and its distinctive ethical problem, particularly in the area of autonomy and allocation, and specifically with regard to the frail elderly. Home care serves a much wider group Of clients than the frail elderly, but these other clients and the ethical issues distinctive to their care were beyond the scope of our research. obviously, the sheer diversity of home care services and clients calls for more extended analysis from bioethics.

The principal source of the report was a collaborative research Project Of The Hastings Center and the Division of legal and Ethical Issues in Health Care at Montefiore Medical Center. This Project was part of a four-year grant program in which the Retirement Research Foundation supported twenty--eight research projects on the autonomy of the elderly in long mm care. For readers interested in the topic, a special supplementary issue of The Gerontologist [June 1988] contains reports on a number of these research projects.)

Additional ma al for this report comes from a Hastings Center Project funded by the Ittleson Foundation. This earlier project involved a comparative study of home care for the elderly and community-based care of the mentally ill It provided an initial exploration of many of the ethical issues crucial to this report.

We want to thank both the Retirement Research Foundation and the Ittleson Foundation for their support of this research. In addition we thank the members of the two project study groups. Together, they number over sixty-five specialists in ethics and the various professions serving home care. Though too numerous to mention individually, their contributions to this report were indispensable.

The dramatic growth of our elderly population, coupled with cost-containment policies in hospital care and limited options in nursing home care, means that massive numbers of frail elderly now receive care at home. At present, more than 20 percent of the elderly population is functionally disabled and needs basic assistance in daily living; of those receiving such assistance, more than 70 percent continue to live in the community (Doty 1986; Liu et al. 1985; Special Committee on Aging 1987). Functional disability, and a consequent need for long-term care, is particularly high among the "old-old" (those aged 85 and over), the fastest growing segment of the U.S. population and the group that, by 2040, is likely to produce half of the aggregate demand for long-term care among the elderly (Suzman and Riley 1985; Soldo and Manton 1985). Thus, the present elderly population receiving home care is only a portent of what lies ahead as our society continues to age, as life expectancy lengthens, as medical technology becomes more expert at sustaining frail lives and doing so outside institutional settings (Barhydt-Wezenaar 1986; Health Care Financing administration 1987).

A pattern is emerging in long-term care of the elderly that will dominate health care well into the next century. Medicare's prospective payment system now encourages hospitals to implement early-as-possible discharge of elderly patients. At the same time, nursing home beds are scarce, their cost is high, and private and public coverage of these costs remains limited (Harrington and Swan 1985; Institute of Medicine 1986). The paradigm evolving from these pressures is one of greater reliance on home care. Recent increases in the number and services of home care agencies attest to this; home care is one of the fastest growing sectors of the health care system (New York Times 1988; Samuel 1985; Waldo 1984).

The growth of home care, however, is not simply the product of demographic and marketplace forces. Such community-based care is a paradigm of choice, enjoying broad social support because it serves the frail elderly ;it home, protecting them from the coercion and constraint associated with institutionalization Callahan 1981: Cetron 1986; Halamandaris 1986). As long as nursing homes evoke images of abandonment and failure on the pan of families images that remain viscerally powerful even if inaccurate-they will continue to be the very last resort of the elderly and their families struggling with chronic health care needs.

From a value perspective, then, home care is especially compelling. With its mission to support the frail elderly, without loss of autonomy, ill the community, home care promises to sustain personal independence and social integration of the elderly, and to prevent the dramatic dislocation, strained relationships, and sense of guilt that can rend families when an elderly member enters a nursing home. From the perspective of health care policy, it promises an efficient alternative to inappropriate nursing home admissions and the higher costs of extended hospital care. In the ideal at least, home care occupies a morally and socially "unassailable" position (Bayer 1986).

The reality of this ideal will be tested as home care bears greater burdens within the health care and social service systems. Already, some fundamental questions can be posed: Will home care be able to meet the increasing demands and wide expectations placed on it-! Will it, in fact, radically deinstitutionalize long-term care of the elderly, enriching the meaning of "care" beyond the institutional and medicalized definitions long set by acute care? Will the expansion of home care mean that our health care system finally comes to terms with chronic care, particularly with the manifold forms of caring and the varied sorts of care givers who are essential to sustaining the frail elderly.-,

Or will home care continue to function mainly as a strategic fix for problems in acute and institutional care, providing minimal care for the elderly who are discharged "sicker and quicker" from hospitals and who are unable to enter nursing homes? Will limited home care resources hobble professional caregivers and exhaust families caring for their elderly members?

Whatever its future impact, home care vill be a clear proving ground for public policy and social consensus in our graying society. It will also be a proving ground for other, more personal ethical issues. Even though medical technology has become ever more adept at extending the edges of life, there are few signs that it can essentially lift the burdens of life at these edges. For many of the elderly, longer life means frailer life. The care they need raises elemental questions about frail and dependency, questions about autonomy and obligation and the complex relationship between the elderly and those who sustain them in the community.

To understand the ethical complexity of home care, it is crucial to detail at the outset what it entails. For all its simple and domestic connotations, "home" care encompasses services ranging from personal care, homemaking, and shopping assistance to high technology medical care such as dialysis and tube feeding Holt 1986). It includes medical diagnosis and treatment, nursing care, laboratory services, medication, physical and speech therapy, the provision of medical supplies and equipment, personal care, health aide and homemaker assistance, repair and maintenance services, transportation, mental health care, personal emergency response systems, adult day care, respite care, even social companionship (Lombardi 1986; Select Committee on Aging 1984).

Considering this range of services, it is not surprising that home care is marked by tensions between medical and social models of care (Kane and Kane 1987; Liu et al. 1985; Wolff 1988; Wood 1986). Home care continues to be heavily ruled by medical diagnosis and treatment, even though its philosophy of care is committed to the full range of services that support the autonomous daily living of the frail elderly and their ongoing integration into the community. The danger in this medicalization is that ho care might signify chiefly a change in site rather than in the basic conceptualization of care and the range of services provided. If home care means only some version of acute care delivered at home, then it becomes institutional care manque a domestic version of hospital or nursing home care without, of course, the array of services and personnel available in these settings. Yet at its best, home care requires a change in the basic definitions and structures of care as formulated in institutional settings. It calls for a wide spectrum of services and caregivers precisely because the problems of frailty are enduring, multidimensional, and far more than medical.

Home care not only provides a range of diverse services, it also incorporates a complex mix of caregivers. The actual delivery of care often involves a protean crowd of funding and gatekeeper agencies, direct service providers, subcontractors, equipment suppliers, and special-service vendors. Moreover, formal services supplied by professional home care agencies account for only a portion of the care given to the frail elderly. Informal" caregivers principally family members-provide large amounts of care and care management. This dependency on informal caregivers adds to the complexity, fragmentation, and potential range of conflicts within home care. Diverse funding sources and reimbursement policies create additional problems for the integration of care.

All of these elements appear in most concentrated form when formal home care services, funded by Medicare or Medicaid, are provided to clients who also receive informal care from family members. It is precisely this mix of care that will be our principal focus. In exploring the nature of this care we will track issues of both client and care-giver authoromy. Our goal here will be to suggest a model of autonomy that recognizes the value of accommodation between moral agents in the highly cooperative tasks and tightly constrained conditions that define home care.

We follow this path, quite conscious of recent critiques that challenge the dominance of autonomy in bioethics (Gaylin et al 1984; MacIntyre 1981; Moody 1988; Thomasma 1983,1984). As these critiques aptly point out, autonomy is only a single value in the complex world of health care. All ethic built solely on autonomy is bound, then, to be conceptually narrow and empitically thin. Nevertheless, autonomy remains ail elemental ethical value, an especially crucial one in long-term care where conditions of frailty and dependence on caregivers can severely threaten the self-determination of the elderly.

Moreover, autonomy is an instructive point of focus for comparisons between home care and acute care. In the analysis that follows we will indicate where the acute care model of autonomy does not serve the distinctive elements of home care. This approach will contribute, we hope, to the ongoing discussion of autonomy in bioethics and to the growing exploration of ethical issues in long-term care.

The Nature of Home Care

Home care is chronic care. It differs markedly from acute care with its focus on short-term, cure-oriented treatment. In the frail elderly, chronic care confronts multiple impairments that advance relentlessly and intrude drastically, often irreversibly, upon basic life functioning. Chronic care is therefore ongoing, uncertain about prognosis, varied-even diffuse-in its modalities, directed at palliation and functional support rather than cure and return to normal functioning (Koff 1988). Instead of seeking to rout some invasive, alien" process in the manner of acute care, chronic care more often aims at helping the elderly integrate illness constructively into daily life and self-idenfity (Jennings, Callahan, and Caplan 1988). What is fairly standard in acute care-shared expectations about medical outcome-will often be absent in chronic care. Elderly home care clients may be unwilling to accept increasing levels of dependence in an environment where once they functioned independently. Professional caregivers may be frustrated by the downward trajectory and increased extent of frailty in the lives of their clients. They may also be frustrated by their inability to provide the kind of specific intervention that in acute care brings about concrete improvement in patients.

Because home care is chronic in nature, it is not simply or even predominantly medical. The acronyms familiar to long-term care "ADL" (activities of daily living) and "LADL" instrumental activities of daily living) define the clemental nature of much of home care: assistance with dressing, eating, bathing, toileting, mobility, shopping, cooking, transportation, homemaking and maintenance. Care of this sort is not dominated by life and death questions. Ethical problems arise, in less dramatic fashion, within the routines of daily life where autonomy cedes to dependency. A final difference between chronic care and acute care is obvious: homes are not hospitals. They are not designed as settings for caregiving. They become such only reactively, incrementally, and often under duress, as illness or frailty invade the precincts of daily life. Even then, the regimens of care contend with a setting shaped by the personal tastes, fiscal means, and life style of the care recipient. Setting is, then, both a strength and source of tension in home care. Elderly clients can remain independent and free of institutional constraints in home care, but "home" is also a highly idiosyncratic place, septic with possessions and routines and personal relationships that do not always mesh with the requirements of care, the obligations of caregivers, or the restrictions of the caregiving system.

Family as Informal Caregivers.

Only a small percentage of the elderly in home care rely exclusively on paid or "formal" caregivers. In fact, families bear the primary burden of home care providing 80 percent of all days of home care in the United States Special Committee on Aging 1987). Professional, formal home care generally functions to supplement or complement rather than replace family and other informal care.

The national profile of family caregiving indicates that adult children are most frequently the primary caregivers, followed by spouses, siblings, and other relatives. Most of these caregivers are women and most caregivers have been providing assistance for one to four years, with 20 percent doing so for five years or more. Many of the caregivers are themselves elderly (35% over age 65), and approximately one-third of the caregivers work outside the home. About 80 percent provide assistance seven days, with spouses spending the largest amount of daily time on caregiving (Stone, Cafferata, and Sangl 1987).

The intense involvement of family caregivers sharply distinguishes longterm care in the community from hospital and nursing home care of the elderly. When an elderly person is hospitalized or placed in a residential institution, the family's caregiving can virtually cease. Even the responsibility to oversee care can be drastically eased. Institutional staff will routinely be available, food will arrive, medical and other care will be provided. Most importantly, supervising the details of care will be the responsibility of the institution. But many of these tasks and responsibilities devolve on family members when a disabled elderly person remains at home. Whether they are the sole caregivers or provide care in conjunction with professional caregivers, family members who provide care take on serious, often massive burdens. Although the care they provide may be termed "informal," it is by no means insubstantial (Brody 1985; Cantor 1983). Physically dependent or cognitively impaired elderly often need round-the-clock assistance and supervision. Even when care is less comprehensive, it can be consuming and unpredictable. The scope of informal caregiving covers almost the complete gamut of home care services. Family members assist with medical care medications, injections, dressings, catheters). They even manage advanced care as it becomes increasingly common at home (dialysis, tube feeding, respiratory technology). In addition to health care they provide assistance with the whole range of ADLS (mobility, bathing, dressing, eating, toileting), as well as with instrumental assistance (cooking, laundry, shopping, house cleaning and maintenance, transportation, management of financial affairs) (Caro and Blank 1987; Stephens and Christianson 1986).

Overall, family caregiving represents a major commitment of time and energy to tasks that are "mundane, unglamorous, repetitive, and labor intensive" (Kane and Reinardy 1989). Moreover, these tasks frequently turn out to be heavier than anticipated and, following the trajectory of frailty, become more difficult and unpredictable with time. Conflicts with work and other obligations can build. This is especially true for women, who are the primary caregivers of the elderly and who often find that caring for elderly family members conflicts with other familial and social roles.

Since one family member usually acts as the primary caregiver, resentment and guilt can develop in families, as well as conflicts about the adequacy of care and the decision making authority of the primary caregiver. Family members who provide little or no hands-on care often remain closely tied to an elderly parent and personally concerned about care decisions. In many instances, family caregiving simply replaces the problems of professional-client relationships with more crowded and entangled moral scenarios. Some family members, by temperament, prior relationship, and sense of filial obligation are readily able to provide ongoing, personal care to a frail elderly family member. But others, on any of the above counts, will be much less ready and able. Long-standing relational problems can infect the care-giving relationship, or can actually be exacerbated by the elderly person's experience of dependency and the caregiver's sense of burden. Even when past relations have been good, family caregiving can be difficult because of the changes (such as parent-child "reversals") that affect familial relationships.

Further complications develop when families overestimate their ability to provide care or underestimate the progressive path of disability in their elderly family member. The health care system adds to these problems. Families are not always involved in the hospital discharge process (Dubler 1988; Zuckerman 1987). Yet, because Medicare's prospective payment system encourages early discharge and because the constraints on home care coverage are severe, families are often left with heavy responsibilities in providing and managing care (Fischer and Eustis 1988). A health care system that tightly limits both hospital stay and subsequent formal care at home does not finely gauge the tolerances and resources of individual families.

Formal Care: The Home Care Agency. Home care does protect the elderly from institutionalization, but the home care system itself is thick with institutional structures and controls. Government funding of home care services comes from a variety of sources-medicare, Medicaid, the Older Americans Act, Social Security Tide XX block grants, and the Veterans Administration, as well as state and local appropriations. This diverse funding creates a complex set of requirements, controls, and institutional ties for home care agencies. Moreover, agencies themselves are not uniform institutional bodies. They may be public or private, not-for-profit or proprietary, hospital based, free-standing, or sponsored by nursing homes or social welfare agencies. Further variation comes from the range of services provided. Many agencies provide health care only, limiting themselves to high tech care, or to basic medical, nursing, and therapy services (as in the case of certified Medicare agencies). Other agencies offer only personal care and homemaker services; still others specialize in case management, providing assessment, placement, and monitoring of services that are directly provided by others.

Since agencies offer limited services, while clients have wide-ranging needs, the structural arrangements of home care include complex referral, sub-contracting, and "special vendor" relations between agencies. This institutional environment is further crowded by varying regulatory and monitoring mechanisms on the federal and state level, as well as some internal to the home care industry itself On the level of its providers, then, home care is anything but deinstitutionalized. The direct relation between caregiver and client is surrounded by an institutional thicket of inter-agency agreements, the requirements of government funders and regulators, and connections to referral services and the institutions that sponsor many home care agencies (Sabatino 1989; Select Committee on Aging 1984,1986).

Institutional structures are perhaps most powerfully felt in the area of government funding and regulation (Davis and Pritchard-Pullins 1987). Because funding is limited and highly fragmented in its sources, reimbursement formulae loom large in home care. If a client is eligible only for Medicare coverage (available for a relatively brief period and limited largely to medical and skilled nursing care), the agency must decide if it is willing to provide this service when there is risk that the coverage will prove insufficient. It often happens that when Medicare coverage expires, clients need ongoing care but are unable (or unwilling) to pay out of pocket for additional services. Rather than discharge such clients from care (and be liable to regulatory rebuke and legal challenge, not to mention moral quandary), an agency may continue care without reimbursement-at its own fiscal peril.

In another variation on this dilemma, agencies often have to choose between insufficient care and no care. When an agency assesses a client at a level of care for which funding is denied, the agency can offer a lower (but reimbursed) level of care or it can refuse to initiate or continue care. But refusing clients or, worse, discharging them-can negate the whole purpose and mission of the agency. The alternative to abandoning clients is, therefore, providing a lower level of care, following the pragmatic dictum that some care is better than no care. The choice is, of course, wrenching for agencies who must deal with the harsh reality of under-treated clients and with families who struggle unsuccessfully to take up the slack - Cases of under-funded care frequently result from hospital discharge pressures and from the limited negotiating strengths of home care agencies. When an agency is Medicare certified, has a contract with Medicaid, or depends on a particular hospital for referrals, it cannot easily or regularly refuse clients on the basis of inadequate care plans. Moreover, once a client is registered with the agency, contractual and regulatory requirements, as well as moral commitments, bind the agency to the client in ways that wreak havoc with the autonomy of the agency and its commitment to the client's autonomy and well-being.

Similar problems can also develop when the level of care originally approved is adequate, but increasing frailty demands additional care. When additional care is not approved or only partially approved by funding sources, agencies can find themselves caring for clients whom they would not accept if they were now applying for care. Nevertheless, contractual agreements, funding requirements, regulatory controls, as well as the agency's own sense of commitment to the client impel the agency to continue service under a care plan that is inadequate. These pressures do not bode well for home care. The fear of fiscal burden, legal liability, and negative reports from state inspectors is now prompting agencies to avoid potential problems by being more cautious about the clients they accept. Reimbursement categories rather than client needs increasingly drive the system and define provider autonomy in self-protective terms.

Home care agencies also face problems from the client side, when the elderly or their families demand services that are not covered or that, in the assessment of the agency, are not required. At the same time, agencies find other clients living in deteriorating physical conditions, in unsafe neighborhoods, or among neglectful, even abusive, family members. These clients oftentimes reject any improvement in their living conditions, or refuse to take any steps against family abuse. In such instances the best interest commitments of the agency are pitted against the autonomy of the client. Autonomy generally wins out, but not without enduring moral qualms for the agency.

The Role of Home Care Professionals. Many of the problems of the home care system fall most heavily on the front-line professionals who assess needs, develop care plans, visit clients, and provide direct medical, nursing, and other services. These professionals are often trained in acute care settings, and their standards of care, and sense of professional authority and autonomy, can be severely challenged in the home setting. Here they are outsiders; client and family authority is powerful; professional notions of acceptable risk and appropriate conditions for care may not hold sway.

Nurses, who are the most frequent professional visitors to homebound patients, find situations of substandard or inadequate care particularly stressful. Unchanged bandages, undertreated infections, irregular self-medication, inadequate nutrition, unclean conditions, and a host of other slippages can work against their best care plans and efforts. When caregivers cannot draw additional care out of the reimbursement system and cannot prompt informal caregivers to raise their level of care, they face two extreme choices: they may take steps to withdraw from the case, or continue to participate because only worse care will follow their departure.

Home care professionals rarely seem to choose the first option. They regularly continue to serve clients in such situations, choosing to supply ongoing care in the face of their own professional hesitancy and fears for their client. Strategically, their response is to accommodate professional autonomy to the reality of hard cases, to continue negotiating for higher levels of care from the formal system or from informal caregivers. In short, the burdens and ambiguities of compromise are preferred to the abandonment of clients.

Such choices entail conflict between professional beneficence and client autonomy. Caregivers can feel that their clients or informal caregivers have chosen unacceptable levels of care, that mistaken autonomy has imposed harm on the client. But from the perspective of client and family the situation may appear to be "the best we can do," a tolerable even if far from perfect way to deal with the burdens and risks of frail . Cases of this son are additionally problematic to front-line professionals because of pressure from agencies and from regulatory overseers to sustain "adequate" levels of care.

Professional caregivers are likewise the ones who see the direct effects of underfunded care and who must strategize around denials of increased care. In addition, when functioning as case managers, they can find themselves struggling with the double role of advocate and gatekeeper, tile task of seeking optimal services for clients and at the same time devising care plans that control costs and remain well within the limits placed on services. These potentially competing obligations can painfully strain the moral agency of caregivers.

The Role of the Home Care Aide.

Home care aides (also called home health aides, home care/health attendants, personal care attendants, homemakers) are generally the agency staff who deal most directly with clients and families, day by day, over extended periods of time. Home care aides are primarily women. They have little formal training for their work and can count on little of the power and prestige common to health care professionals. Issues of class and race further complicate their working relationship with clients. Most aides, at least in urban areas, are members of minority groups, with limited employment opportunities. As a group, they are economically exploited, laboring at the margins of the relatively well- aid health care work force where they generally receive minimum wages (less than they might earn in the fast food industry). In the most difficult home care situations, aides are vulnerable to abuse, verbal and physical, from clients and their families. In less dire situations, they may be treated hostilely and disparagingly, monitored minutely by clients, or pressed to perform tasks not in their job descriptions. The home setting often means a number of family supervisors" pursuing diverse goals and dispensing conflicting instructions. In the midst of these varied pressures, aides must work alone, without collegial support, serving clients who are extremely frail and perhaps suffering from dementia, who need close attention and constant assistance in the most basic activities of daily life and personal care. In the absence of a technical professional status and in their isolation as workers in other people's homes, aides often make decisions and provide care on the basis of personal rapport with clients and families. This, much more than in institutional settings, the nature of care can be affected by relational harmonies and tensions. On the positive side, this means that home care escapes the impersonal quality of institutional care. Many aides serve clients for extended periods of time, and the bonding between them and their clients is quite strong, frequently extending to family members as well. In cases where there are no active family caregivers, aides can function almost as surrogate family members.

Precisely because of this close one-to-one relationship, however, home care is vulnerable to the moods and mutabilities of strained relationships. Thus, while providing opportunities for care on personalized terms, home care can also become oppressive when the care-giving relationship is marked by conflict and stand-off In institutional care, difficult care-giving situations can be relieved by staff reassignment or at least by shift changes. But in home care this is far less easy or likely. Frequently, aide and client are left together in a fight island of contact, and the relationship has to work itself out-or not with potentially damaging consequences to the quality of care and the autonomy of one actor or the other.

Most home care agencies clearly recognize the need of supporting home care workers in the field and providing mediation when personal conflicts disrupt the care-giving relationship. But fiscal and personnel limitations provide few resources for such mediation. Even on a theoretical level, health care ethics has offered little analysis of the moral binds that arise in home care. As a result, home care agencies and their staffs have to deal with these problems on the run and on their own. They can call on virtually no long-standing tradition of home care ethics and very few well-established strategies for dealing with ethical clashes between client and caregiver autonomy.

Toward a Model of Accommodating Autonomy

For the past twenty years, bioethics has followed the course of acute, high technology care. As medicine grew increasingly able to maintain organ function in otherwise moribund, hopelessly ill, or permanently comatose patients, decisions about the use of such technology became increasingly difficult. The response o bioethics was strategic: a focus on those principles that defined the ethical values at stake in conflicts between patients and their physicians. Autonomy and beneficence thus came center stage. Ethical analysis focused on patient competency and self-determination, on the nature and limits of care-giver obligation, on the threats posed by professional paternalism, institutional self-interest, and the imperatives of high tech medicine.

Historically, then, the philosophical principles of bioethics, its rules of consent and refusal, were directed at difficult, often life-and-death decisions in hospital settings. As these principles and rules have come to dominate health care ethics, the assume that multiple parties-the patient, the patient's family, th physician and other health professionals, the health care institution and finally the state-have a real stake in the structure and outcome of the decision-making process.

But despite the multiplicity of agents and the legitimacy of their various interests, the ethics of acute care identifies the competent patient as the decisive moral agent. The patient is the palpable subject of treatment, the one who directly bears the attendant risks, the ultimate benefits and burdens of treatment (or forgoing treatment). Family members and physicians, hospitals and thirdparty payers, even society at large, may feel the impact of treatment decisions, but only patients bear these decisions, literally, in their own flesh and bone.

In this scheme, the patient's choice trumps the choices of family members-even when these choices seek only the patient's well-being. The autonomy of patients also outweighs the beneficence of physicians or their interest in deploying medical skill and knowledge. Finally, the individual patient's autonomy overrules institutional or state interests in effective health care, efficient management, cost-containment, or the prevention of liability. All of these other actors may offer information, counsel, and suasion, but they may not control or coerce the decision, however beneficent their intent. In short, the patient is the necessary and sufficient decision maker.

This model is important in the acute care setting where patients face a number of distinct threats to their autonomy. First, they are displaced from their daily lives into an institutionalized environment the home territory of highly specialized professionals. Here, patients confront difficult decisions that can shape the length and quality of their lives. In making such decisions they are dependent on physicians to explain treatments, describe risks, plot out benefits and burdens. Dependency on physicians can diminish autonomy, especially when physicians withhold or paternalistically shape information, when they have limited knowledge of or agreement with the values that underlie a patient's preferences. Beyond the immediate care-giving relationship, the selfdetermination of patients is further circumscribed by the hospital's institutional priorities: efficiency, cost containment, the advance of research and training, fear of liability, favorable public image.

In such a model, patients and caregivers confront each other unequally, Before the powerful authority of caregivers, patients need constantly to voice and protect their choices. The care-giving relationship is adversarial to the extent that patients cannot simply assume common values and goals with their caregivers. In the clinical setting of modern medicine, communication on matters of moral import and ambiguity may be minimal, with patients and physicians valuing treatments differently (Whitbeck 1985). The result is a marketplace or political-arena model of care: patients must be aggressive consumers or self-advocates within a caregiving system that pursues its own independent goals and responds to patients' private interests only under pressure.

This model of autonomy as essentially "under siege" has been appropriately criticized as abstract, theory driven, and divorced from the actual experience of patients and physicians (McCullough and Wear 1985). But its defects should not discredit the central importance of autonomy-or the threats that work against it in health care. The autonomy of patients can be severely threatened by the paternalism of caregivers (Childress 1982, 1984; Veatch 1981). In long-term care, the autonomy of the elderly is a particularly complex and threatened value (Hofland 1988), and it would be unfortunate if impatience with adversarial renditions of autonomy were to revive smoldering forms of paternalism.

The development of more centrist models of autonomy is desirable, and the task may be aided by greater attention to long-term care. A close look at home care, for example, provides an opportunity to reexamine and refine acute care models of autonomy. The home setting, the role of informal caregivers, the non-medical dimensions of care, and the limited reimbursement system all create special problems that press ethical reflection beyond the standard acute care discussion. In particular, two extreme sons of problems deserve attention: emboldened autonomy and eroded autonomy. Emboldened Autonomy

In acute care, patient autonomy is undercut by an institutional setting that for many patients is alien, isolating, technologically complexing a word, intimidating. Home care provides a drastically different setting-domestic, personal, its routines rooted in the patterns of daily life. Here, the client is on familiar ground and the professional caregiver is foreigner. This reversal does not automatically favor client autonomy, but it does significantly change the dynamics of care: the home setting can mute care-giver authority and encourage, even embolden, patient autonomy.

By keeping elderly clients out of hospitals and nursing homes, home care may encourage some to tolerate a high degree of risk, even against medical or nursing advice. In cases of this son clients may willingly face risk as a trade-off for remaining at home and in control of their own care. This is one of the moral ironies of home care. Managing "on one's own" can mean rejecting all but the most minimal help. Autonomy thus raises troublesome questions for caregivers. Can decisions to refuse treatment be skewed by the home setting? Is there a territorial factor" that can make clients overly secure, impairing their judgment about the amount of care and assistance they really need-! On the other hand, do caregivers tend to be less vigorous in pressing issues of risk, in testing the resolve behind seemingly harmful decisions, than they would be on their own turf in hospital and nursing home settings.;

Because the home care setting can subtly influence decision making and camouflage incapacity, caregivers face a complex task in determining whether risky choices are adequately informed, voluntary, and truly competent. When clients are seen only intermittently, in surroundings where they are bolstered by family and familiar routines, it can be difficult to assess levels of understanding, independence of judgment, and decisional capacity. Caregivers can be shadowed by the fear that they have too pliably set aside beneficence in the name of a particular client's autonomy and ability to manage perhaps barely-at home.

Refusals of treatment are not, however, the sole or even principal expression of "emboldened" autonomy in home care. Many ethical conflicts revolve around assistance with the activities of daily living. Clients are more likely to challenge the performance of caregivers, precisely because they see themselves as experts-unable perhaps to execute, but certainly able to make decisions about food and bathing and dressing, about social and physical routines they have managed through their adult lives. Since this kind of care is generally provided by home care aides and family members, there is no "professional expertise gap" between client and caregiver.

Thus, the supportive, familiar setting and the nontechnical assistance provided may embolden some elderly to control their care unilaterally and autocratically. Home care agencies tell of difficult clients who vex their way through the list of available aides, making demands that exceed the job descriptions and test the human tolerances of these workers. Some home care clients levy rigidly detailed and precise requirements on their caregivers. They reject home health aides on highly idiosyncratic grounds-because of dress or demeanor or because they want aides only of a certain age, or of a specific racial and linguistic background. Other sorts of problems arise when clients are unwilling to cooperate with the financial disclosure or spend down requirements of Medicare and Medicaid, or when they demand hours of service or levels of care beyond the valid and equitable assessments of the home care agency.

Whether control of care stems from a positive sense of being in charge in one's own home, or from a negative sense that one's home is under invasion and must be protected from caregivers, the results are equally problematic. The autonomy of clients runs headlong against the autonomy and limited obligations of caregivers. In comparison with the refusal-of-treatment conflicts of acute care these conflicts about the control of care seem less morally dramatic. For the care-giving relationship they are elemental conflicts nonetheless ubiquitous, wearing, constantly present in the stuff of daily life and the sharp edges of personality and habit.

Eroded Autonomy

Emboldened autonomy, though clearly problematic, is not the rule in home care. For many frail elderly, long-term care at home leads in quite a different direction-toward a progressive erosion of autonomy.

This erosion is not surprising, given the frailty of many clients and the tendency of power to rest with caregivers rather than care receivers. Dependency on others, when it is long-term and involves assistance with the basic activities of daily life, can be read as an indication that autonomy is in fact absent, or that it must be surrendered to the necessities of care. Because elderly clients cannot carry out certain choices or activities without assistance, caregivers may disregard their capacity to make choices or have preferences about these activities. Executional incapacity is thus confused with decisional incapacity. In the minds of caregivers inability of clients to do is seen as inability to decide (Collopy 1988). Such assumptions on the pail of caregivers can be internalized by the elderly themselves, or allowed to go unchallenged because they feel that the care they need can be had on no other terms.

In practice, such erosion of autonomy is often incremental. Caregivers intervene when clients function slowly and imperfectly. In the basic, repeated routine of care clients' preferences are not elicited; their efforts to be autonomous are waved aside by paternalistic soothing or efficient impatience on the pan of caregivers. The dominant interactive pattern is frequently one in which progressive physical and mental incapacity is expected in clients and is equated with progressive inability to be autonomous. Thus, clients can become increasingly passive, infantilized, voiceless in the shaping of their daily lives.

Furtherrnore, the protections of informed consent processes are less effective in home care. Such procedures function best when patients have to make decisions about discrete, clearly definable medical interventions. But home care, heavily involved with the activities of daily life, is by nature decisionally diffuse and open-ended. Its quotidian, repetitive, loosely defined tasks sift like sand through the checkpoints of informed consent.

The task of protecting and preserving the autonomy of frail clients is made difficult by the multiple dependencies of these clients, the burdens and limitations on caregivers, and die amount of accommodation required for the elderly to retain effective voice in their own care. Furthermore, the very nature of home care can camouflage its incursions upon autonomy: its mundane, undramatic, nature can suggest that there are no large ethical issues at stake. Indeed, because home care keeps the elderly out of nursing homes the problem of autonomy can appear to be essentially solved.

But keeping the elderly out of nursing homes" can reflect a very thin definition of autonomy and very minimalist goals for home care (Cohen 1988). Many frail clients cannot forcefully supervise the care they receive, or pursue wider options in a care system that is highly fragmented and notoriously difficult to negotiate. These elderly are left only with the options that caregivers present or allow, options often beyond effective challenge because of the isolating and closeted nature of home care. Thus, many elderly are kept out of nursing homes only to be left in situations that provide severely restrictive forms of care. While safe from the constraints of an institutional setting, they are locked into patterns of care that are invariably controlled by others.

At one extreme, then, home care confronts cases of fiercely autonomous, overly controlling clients; at the other, it deals with clients whose autonomy has been persistently depleted and eroded. Assertive and controlling clients tend to disrupt the caregiving system, thereby drawing attention to the problems of autonomy and its limits. When autonomy is eroded, however, clients are liable to be reduced to silent passivity. They become pliant to caregivers and the workings of the system. Ethical analysis ought to draw special attention to these clients whose autonomy is "invisibly" but relentlessly eroded.

Finding a Middle Ground. Accommodation and Reciprocity

A major difference between autonomy in home and acute care arises from the moral claims of caregivers, both formal and informal. In home care, the client's interest in selfdetermination must often be balanced against the collaborating or competing interests of family, friends, and others whose lives may be altered by the presence of an elderly client receiving care in their midst. In addition, the client's autonomy must be balanced against the autonomy of formal caregivers and care-giving agencies.

The consideration of others autonomy and interests suggests that home care would profit most from a model of autonomy that stood firmly between emboldened and eroded autonomy. Between clients who seek rigidly to control care and those whose autonomy is progressively diminished by care, there is a middle ground where clients develop mutually accommodating and reciprocal relationships with caregivers. To map this domain of diverse moral agents and conflicts, we will look at each major group of caregivers separately.

Families. Families face difficult moral issues in attempting to understand the nature and extent of their obligations to provide care. The extent of family caring indicates widespread recognition that families have a serious duty to provide care. On the other hand families are often deeply perturbed by the inescapable need to set limits to this care. As the disabilities and dependencies of their elderly relatives increase, many families face emotional and moral exhaustion. Trying to balance the demands of care against their own dwindling resources, they are caught between "imperative duties and impossible demands" (Callahan 1987).

Faced with such burdens, family caregivers have a real stake in decisions affecting the locus and level of care for their elderly members. Decisions about home care-for example, where it will be provided and who will provide it-can seriously alter the lives of family caregivers, impinging on their independence, autonomy, and commitments to others. Depending on the extent and impact of family members caregiving, their autonomous interests can move into the foreground of decision making. This is not to suggest that home care requires a move from a model of patient-as-primary-agent (the acute care model) to one of family-as primary-agent. Such a conflating of agency would work too drastic a diminution on the autonomy of the elderly client.

In response to the heavy burdens of family caregiving, the ethical problem for home care becomes one of gauging the interplay of agents, the relative weight to be granted to the autonomy and interests of the family vis-a-vis those of the elderly recipient of care. However calculated in particular cases, decisions about the locus and scheduling of care, about the use and payment of formal caregivers, about recourse to day care and respite care-all have potentially large impact on family caregivers. There is, of course, no ready formula for determining how the autonomy and interests of family members should counterbalance those of the elderly relative receiving care at home. (Variation in families, in their caregiving commitments and resources, is so wide that hospitals and professional caregivers seem uniform by comparison.) But a model that focuses on accommodating and reciprocating autonomies will be far more effective than one that focuses on the autonomy of the client alone and seeks chiefly to protect this autonomy from the paternalism of professional caregivers (Moody 1988).

Accommodation would of course have to transpire on both sides. If the elderly person does not simply set the terms and conditions of care, neither does the family. Again, the acute care model of autonomy would warn about the power of any caregiver and the risks of assuming that beneficence and good intentions will automatically curb that power. With this caution, a model of mutual accommodation would be well suited to home care. Such a model would modulate definitions of autonomy that stress the independence and individuality of the patient When family members heavily share the burdens of care, decision making becomes a horizontal, interactive process, involving negotiation, compromise, and the recognition of reciprocal ties, of common history and values.

Community Caregivers. Although families provide the bulk of informal care, friends, neighbors, and community volunteers support them by assisting them with their tasks, filling in for them, or simply watching out for the elderly who are alone. Organized community programs such as meals on wheels, transportation, and "friendly visiting" services provide an additional support network (Lewis, 1988).

At its best, this community involvement is one of the strengths of home care, but "involvement" is a complex phenomenon, not always a matter of voluntary, planned, and well-delineated assistance to the elderly. People in the community can also become involved with the frail elderly accidentally, unpredictably, and through conflict.

The expectation that friends and neighbors will keep an eye on" a frail elderly person when he or she is alone is not as inconsequential as it first seems. Care plans may assume that the local community will respond positively to the presence of a frail elderly person at least by way of neighborly monitoring and crisis response. But such assumptions are often unilateral and prompted by the limited resources of family and formal caregivers.

To move beyond such tacit assumptions, the commitments and tolerances of the community ought to be explicitly factored into decisions about home care. The autonomy of a home care client is often not guaranteed simply by a "negative right" tolerance that allows an elderly person to live free of interference and constraint. In fact, the fight to be left alone can become problematic when an elderly person creates risk or disturbance for others, or appears decisionally incapacitated, or simply needs ongoing positive support from the community. In these instances the community must either increase its tolerances to accommodate the behavior of the elderly person or take steps to set reasonable and protective limits on it.

The potential for coercion and paternalism looms large in such situations. This can be checked by the basic strengths of home care: concerned family caregivers who act as advocates and mediators, a network of supportive friends and neighbors, a broader service network providing day care and respite care, and finally a home care agency that is able to provide regular monitoring, assessment, and full case management of changing client conditions and needs. At its most resourceful, home care can mesh these elements and effectively resolve clashes between the elderly and other members of the community.

In doing so, a model of accommodating and reciprocating autonomy would seem to be more effective than one focusing on competing claims against interference. It would be a mistake to frame the autonomy of the elderly in such negative terms only; a richer ethical discourse would also speak of positive fights, claims to assistance and support, and the reciprocating obligations of those who are assisted. In thinking about autonomy in home care we need to ask: What are the obligations of a community to honor the independence of the elderly, to meet their needs and respect their autonomy even in the vagaries of frailty? What are the obligations on the pan of the elderly and their caregivers to limit burdens on the community.;;

This leads, of course, to questions about collective and intergenerational obligation, about the kind of society in which community care flourishes or, conversely, founders. Certainly, the frail elderly will not do well in a community that is passionate principally about the negative right to be left alone, that is uneasy with dependency when it is disruptive or overly visible, that expects families or institutions to contain fully the problems of the frail elderly.

In this regard, past experience with the deinstitutionalization of the mentally ill might tutor our expectations about what home care of the elderly can achieve. Many proponents of deinstitutionalization were deeply committed to the autonomy and well-being of the mentally ill, deeply appalled by the restrictive, dehumanizing, even punitive conditions in many mental hospitals. The process of deinstitutionalization did reform the mental health system and benefit large numbers of patients. But it also went a , leaving many of the mentally ill displaced, adrift in communities that were ill-prepared and doubtously committed to assisting them. The fiscal pressures that simultaneously reduced institutional care and constrained the development of community-based care for the mentally ill are similar to the pressures now shaping home care for the elderly. Furthermore, many of the same social biases work against both groups: biases about social dependency, about the presence of the vulnerable and disabled in communities of the able," about family, responsibility rather than community responsibility for the dysfunctional.

The course of home care for the elderly may not replicate the worst failures of deinstitutionalization. But if that earlier movement offers any direction to us, it would be cautionary. The personal autonomy of the elderly will not be guaranteed simply by keeping them out of institutions and in the community. The palpable needs of the frail elderly will not in themselves prompt the development of adequate community-based care. Instead, the difficult accommodations that characterize the balancing of autonomy between frail elderly individuals and the members of their local communities will have to be played out on a larger scale, in social policies that balance the interests of the elderly as a group against the resources and felt obligations of the wider society.

Home Care Agencies. Most home care clients receive both formal and informal care, and therefore the cooperation of family members is crucial to the success of care plans. Yet although the services of the home care agency are contractual, monitored by state inspectors, and open to regulatory citation, judicial suit, and the canons of professional practice, family caregivers are comparatively free of outside scrutiny. This creates problems when an agency finds that a family's caregiving is delinquent.

An agency cannot simply mandate better care from family caregivers, and it may be unable to encourage or indirectly elicit it. While it remains responsible for the overall status of its client, it does not control the care situation as institutional caregivers do. In the cooperative endeavor of home care, the agetcy's compact th family caregivers exists mainly in the moral, not the legal order. Responding to family failure in care is strategically difficult and ethically complex. Does the agency have the moral authority to press a family to reorder its priorities, to give more time and energy to the care of an elderly family member? How can an agency effectively pressure a family about care that is negligent but not abusive in a way that would support recourse to a protective services agency.;

A major quandary faced by agencies stems, then, from their own limited moral authority. Agencies take responsibility for clients and their care plans but have no direct control over informal caregivers who provide substantial amounts of care. The model of autonomy we have suggested, a model favoring accommodation and reciprocity, takes on added dimension here. The cooperative nature of home care argues not for stand-offs between the competing autonomies of formal and informal caregivers, but for mediating their varied obligations

and selfdetermined interests. Such a model would also be salutary with regard to the regulatory and reimbursement mechanisms that govern home care agencies. Rigidly controlling the delivery of services by means of reimbursement and regulatory statute may, in the long run, prove ethically short-sighted. As we have indicated, agencies are dependent on informal caregivers whom they do not control; they must deal with difficult clients, with the frequently unpredictable contingencies that affect care of the frail; they have to contend with staff shortages and turnover, and with reimbursement categories that do not always mirror the needs of clients or the expenditure of staff resources. When regulatory and reimbursement controls are rigidly applied, agencies are allowed very limited discretion in dealing with these problems. The result is a bureaucratization of ethics, an attempt to locate moral authority and discretion only in the upper reaches of the system, mandating lock-step performance from agencies on the front lines of service.

The possibilities for more accommodation between the reimbursement/regulatory systems and home care agencies may be slight, given the present cost-containment climate and the severely adversarial nature of regulation in long-term care. But in theory at least, greater reciprocity between those who pay and regulate and those who directly provide service would serve the moral underpinnings of home care.

Formal Caregivers. The autonomy and authority of formal caregivers can be muted by the home setting, by the ordinary," untechnical nature of the care provided, by dependency on family caregivers and tensions created by family supervision of care. Caregivers face sharp conflicts when clients and families, emboldened by these elements, press to control care in unreasonable fashion. Even in less contentious situations, authority and control remain underlying problems. As we have suggested, they can become particularly troublesome in the relationship between clients and home care aides-a relationship that is further complicated by issues of race, class, and economic justice.

The various tensions between caregivers, clients, and their families require more than a strict ranking of autonomy and authority. The recognition of common, corresponding, or at least cohabitable goals may often be more productive than the determination of whose goal finally trumps." In the daily, long run of home care, autonomy is more acutely protected by accommodation, the recognition of interdependence, mutuality, and shared burdens within a limited resource system.

The Intersection of Autonomy and Allocation

Lean Resources, Not Paternalistic Caregivers. In the ethics of acute care, autonomy is regularly defined in terms of patients' right to make decisions about medical treatment, free of coercion and in the light of adequate information. The underlying assumption is that the necessary resources are in place, primed for use. In fact, ethical conflicts arise because the setting is so biased and booted for treatment that patient refusal appears contextually "odd." Thus, autonomy is most commonly threatened by caregivers who press on to use resources in the face of patient refusal.

This model of autonomy likely needs some adjustment in the light of recent cost-containment measures. Resources are fighter and options put before patients, especially elderly patients, are increasingly albeit covertly rationed. Still, within the acute care model of autonomy there lies an assumption that the resources available for treatment create a powerful imperative to treat. But for home care no such allocational assumption operates. In a system dominated by acute and institutional care, home care is relatively poor in resources.

It is also poor in status, providing care at a clear remove from the central precincts and practices of our health care system. The role of home care is still ancillary and marginal. It functions with very limited physician involvement, relies on nursing and social work supervison, is heavily dependent on nonprofessional formal caregivers and a large but "invisible" force of informal caregivers mainly family members. Yoked with a name that derogates its importance, home care remains a low-profile sector in the health care domain.

On the payment side, private longterm insurance provides exceedingly limited coverage, and most elderly and their families are not able, out of pocket, to meet home care costs (Torrey 1985). In terms of public funding, Medicare and Medicaid are essentially acute care programs that do not meet the long-term care needs of the elderly population. Of the limited coverage they do provide, most goes to nursing home care. The remaining sources of public funds for home care are tightly restricted and highly fragmented (Meltzer 1988; Rivlin and Wiener 1988).

Such restricted and fragmented resources reveal further the inadequacy of the acute care model of autonomy. The paternalistic physician pressing for aggressive medical treatment is hardly a looming threat in home care, where autonomy is threatened more by lack of options and limits on service than by coercion to accept treatment. In the ethics of home care, then, the negative fight to refuse treatment is less important than the positive right to receive care adequate to the needs of frailty. In short, enhancement of autonomy is more crucial than noninterference with it. But enhancement requires a full spectrum of services, something that is not provided by current funding, which in effect construes home care as a cost control measure and funds it sparingly.

Home Care as a Cost-saving Strategy. One of the principal policy motivations for the development of home care has been the claim (or at least the hope) that by providing a less expensive alternative to institutional care, it would lower the overall costs of health care for the elderly. That expectation has been frustrated, in pan because of the inherent difficulty of precisely targeting services. For home care to produce significant cost saving, it would have to function as a direct substitute, for institutional care, reaching precisely those elderly who are at high risk for hospital and nursing home care. It would have to lower admission rates and/or length of stay in institutional care for these elderly, while at the same time creating no new health care services (and costs) for other elderly. But even if it were possible to construct such a narrowly targeted system, it would operate as a cost-saving mechanism for institutional care, not as a program independently shaped to meet the varied and growing needs of the frail elderly in the community. In short, it would produce a minimalist system, serving strategically to diminish the flow of patients into institutional care and hastening their discharge from this care. Such a "substitution" view means that home care must walk trunk-to-tail behind acute and institutional care.

Targeting home care to the right" patients has proved exceedingly problematic Weissert, Cready, and Pawelek 1988). In actual practice, home care serves a diverse patient population whose course of care is not absolutely predictable. Not all home care clients are definitively rescued from hospital and nursing home care, and in the end their accumulated health care costs are not necessarily lowered because they have received home care.

Unable to lower over-all costs of health care to the elderly, home care is, therefore, more tightly collared by cost containment. Its own costs must be curbed even as it serves a dramatically increasing older population and confronts the prospect of unprecedented numbers of frail elderly after the turn of the century. As a result, all the actors in home care-clients, families, program administrators, agencies and other direct service providers-face severely limited options as we move into the nineties (Kane 1989). Tight funding means that those who provide services are themselves straghtjacketed by the limits and restrictions of funding. The possibility that the autonomy of the elderly will be breached by the paternalism of these caregivers is not a major threat. The more persistent and painful threat is that both caregivers and clients have to contend with very low amounts of reimbursed care. Consequently, large numbers of elderly and their families must struggle to manage on their own with inadequate formal care. In so managing-and, often, not managing-they find that being frail or caring for a frail family member severely limits self-determination.

The Medicalization of Home Care. Not only is home care sparingly funded, but its funding is dominated by acute care priorities and categories. In the existing cost containment scheme, reimbursement for home care favors services that are likely to substitute for acute and institutional care rather than those that are distinctive to home care. As a result, reimbursement flows to medical, skilled nursing, and related services. In fact this flow has led to the increased use of high technology in home care (Handy 1988; U.S. Congress 1987).

The medicalization of home care means that personal care assistance, psychosocial support and other nonmedical services are given relatively low priority. While some elderly are tethered to expensive high technology care at home, others are unable to get adequate assistance in meeting the simple demands of daily living. Even when these broader services are funded, they are often dependent on prior or simultaneous need of medical or skilled nursing care. Thus, within the various reimbursement systems of home care, medical need often legitimizes other needs.

This medicalizing of home care is part of the social construction of aging as a medical problem (Estes and Binney 1989). Pervasive as this view might be, it provides poor response to the large numbers of frail elderly for whom the basic business of daily living is mazed with difficulties and dead ends. For those who are most incapacitated by chronic disabilities, daily life is often a battle to eat and move about to be clean and kempt, to master bladder and bowel. Few of these struggles pass muster as medical or skilled nursing problems. They consequently claim low priority in the professional, fiscal, and cultural categories that shape the health care system.

In seeking to meet the varied needs of the frail elderly, home care is centrally concerned with the value of autonomy. The slippages of frailty mean that autonomy can become pointedly ironic. In the midst of frailty, to continue to be ourselves we will need die assistance of others. To have options, carry out choices, and voice preferences that are not just ineffective wishes, we will have to count on caregivers. Dependency will be increasingly written into the text of our self-ruled (that is, "autonomous") lives. In the experience of later life, there may well be moments when we will shape and speak ourselves in accents of refusal turning from the promptings of caregivers to follow more personal, even if more difficult, options. Here the model of autonomy persistent in acute care will serve us well. But for the long haul of frailty, a more constant refrain is liable to be our need for assistance in the daily course of life, assistance that does not require surrender or submission, that accommodates to the dignity and privacy and idiosyncracy we want. For this we will need a definition of care that, legitimately and not by exception, goes beyond medical definitions.

The present health care system does not foster such definitions. In the allocation of resources, which is where the system declares its priorities, home care is relegated to the end of the line. Its funding resources are scarce and eligibility norms stringent. Its distinctive contribution, the provision of psychosocial support to the frail elderly, is precisely what medicalized definitions of care overlook- To the extent that the autonomy of home care clients is dependent on a wide variety of services, the present allocation system with its highly medicalized priorities gives that autonomy limited play.

In its limited resources, in the constricting effect of allocation on autonomy, home care is at present very different from acute care. On the policy level this difference deserves attention for the sake of home care itself, but it is also possible that home care may be a dark harbinger of what lies ahead for acute care as the "age of bureaucratic parsimony' progresses (Siegier 1984). For the elderly at lease acute care may come more closely to resemble home care in the tensions that exist between allocation and autonomy. The "primary" tension between patient autonomy and professional paternalism might prove to be a function of the health care system in more resource-rich days, before the advent of DRGS and other cost controls.

Setting an Agenda

At the present historical juncture, home care offers a critical measure of the conditions of aging and the vicissitudes of health care policy in our society. But the home care sector has received little attention from bioethics. Conversely, behavioral and social science research into home care has generally by-passed ethical issues, as has policy analysis. There is a clear need, then, for a research agenda focused on the ethical issues of home care.

In particular, the ethical dimensions of chronic frailty among the elderly deserve fuller exploration. This would mean attention to issues of suffering and selfhood, the meaning of autonomy under conditions of progressive dependency, and the ramifications of medical versus psychosocial models of care. On both the empirical and analytic levels there is need for investigation of the actual value priorities of the frail elderly, the sources of conflict between caregivers and care recipients, the correlation between caregivers' perceptions and those of the elderly with regard to the burdens of frailty, the benefits of care, and the definition of acceptable levels of risk - In home care, family caregivers and home care aides play crucial roles that have no parallel in acute care. These roles and their distinctive ethical burdens deserve fuller description and analysis. A number of issues stand in the foreground: the basis of family obligation to provide direct care; the limits of this obligation; the relation between familial obligation and wider societal obligation to provide home care; and the nature of autonomy and beneficence, independence and paternalism, within family caregiving. The home care aide is rarely mentioned in the world of bioethics even when it strains to widen the definition of caregiver" to its full compass. Since aides are the "handson" core of home care, die ethical ramifications of their caregiving should be carefully assessed. Ethical analysis should devote special attention to: the role, fights, and responsibilities of these caregivers; the sources of ethical burden and conflict in their work; issues of economic justice; the hidden conflicts of class and race in home care; and the differences between aides, clients, and agencies in defining both client and worker autonomy.

Home care agencies are corporate moral agents of a special son, and the moral dilemmas they face need fuller examination. Many of these dilemmas fall under the "ethics of strained resources": lack of reimbursement for crucial services to clients; fiscally driven access and discharge problems; staff shortages and turnover that affect quality of care; conflicts created by the dual advocate/gatekeeper role. In general, home care provides rich territory for exploring such issues as distributive justice, covert rationing, the fight to health care, and the relative priorities of medical and social forms of assistance. In home care, the gritty reality of these overarching issues is most powerfully felt in the experience of home care agencies.

Fuller exploration of home care could well focus on the ethical impact of regulation and legislation. In longterm care, regulation and legislation have a sharp adversarial edge vis-a-vis providers. Such regulation often turns out to be morally ironic. It favors client safety over autonomy and the fight to assume risks; it prods agencies simply to observe "the regs" and avoid negative citations rather than pursue fuller definitions of service; it reduces the ethical dimensions of care to legalistic and bureaucratic minimums. In short, home care would provide a strong case for examining the dilemma of regulation: loose regulation entails the risk of negligent, sub-standard care but strenuous regulation stirs moral cynicism and a kind of ethical souring among those regulated.

During the course of our research we found that those working in home care.. on all levels, were deeply concerned with the ethical issues they regularly faced. They also indicated that they had little access to formal analysis and interdisciplinary discussion of these issues. The development of case materials and educational modules on ethical questions would help to address this gap, as would sessions at professional meetings, articles in professional journals, or even committee or task force attention within professional organizations. Home care agencies might also consider in-service education and discussion of ethical issues, the development of ethics committees, and consultation or mediation services to deal with ethical conflicts and dilemmas. Following the lead of their institutional counterpans, these committees and consultation services might take on education and policy-making roles and not focus simply on review of difficult cases. Given the limited resources of many home care agencies, the development of multiagency or regional ethics committees might be a productive strategy.

Setting an agenda for the ethics of home care is somewhat risky, given the various forces that drive our health care system and the diversity and fragmentation of home care services. But as our elderly population continues to grow, and care in the community becomes increasingly the norm, the moral problems of home care call out for sustained attention. Whatever direction it takes, the development of ethical dialogue and practical strategy stands as a crucial task for practitioners, policymakers, and those concerned with the ethics of health care.
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Title Annotation:includes case studies
Author:Collopy, Bart; Dubler, Nancy; Zuckerman, Connie
Publication:The Hastings Center Report
Date:Mar 1, 1990
Words:11759
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