III. HOME CARE

Home care is an almost limitless array of preventive, therapeutic, restorative, and supportive services delivered to persons living in their own homes or the home of another in the community. In the long-term care context, home care comprises home-based services delivered to chronically ill or impaired persons. Although this care may, and increasingly does, involve high-technology medical services, the majority of care is directed at functional support (Koff). Home-care services can be divided into those services considered "skilled," such as skilled nursing, rehabilitation, speech therapy, occupational therapy, and physician home visits; and those considered "unskilled," such as personal assistance with activities of daily living (like bathing or dressing), household maintenance, monitoring, supervision, and instrumental assistance (for example, shopping or financial management).

Until the twentieth century, virtually all medical care was provided in the home. As modern medicine developed more effective and technically sophisticated interventions, medical care shifted to hospitals and physicians' offices. However, by World War I, the steadily growing numbers of persons with chronic illness reignited interest in formal home-care services. During the 1940s, limitations in the ability of hospitals to meet the increased demand for inpatient services contributed to the development of hospital-based home-care services. The 1965 amendments to the U.S. Social Security Act that created Medicaid and Medicare were intended, in part, to expand the supply of home care. Further amendments in 1967 made home care a mandatory benefit, and others in 1972 streamlined the terms of Medicare program participation for home-care agencies (Benjamin). By the mid-1980s, home care was described as the fastest-growing service under Medicare (Reilly et al.).

Growth in the home-care industry has been attributed to several factors, including the preference of patients for care at home rather than in institutions such as nursing homes, the availability of informal caregivers, the increased number of users, the intensity of utilization, and the increase in public reimbursement of services. As of 1987, home-care services were provided to about 7.7 million persons of all ages in the United States, but almost three-fourths of these persons were over the age of sixty-five (Wieland et al.). The elderly (over sixty-five) population in the United States is projected to increase by 40 percent by 2020, and the use of home care is expected to increase by 60 percent during that time (Rivlin and Wiener). Among the non-aged (under sixty-five) population, use of home-care services has been profoundly affected by the growth, in certain major cities, of the population of persons with acquired immunodeficiency syndrome (AIDS)—a 600 percent increase between 1984 and 1990 (Burbridge). The increasing use of formal home-care services—those paid for directly or by third-party reimbursement, such as Medicare, Medicaid, or private insurance—has triggered concerns regarding the cost, quality, and availability of home care. The home-care "industry" has experienced increased competition, oversight, and regulation as well as growth of the for-profit sector. There has also been a steady "medicalization" of home-care services, driven to a great degree by third-party reimbursement (Estes and Binney).

About 85 percent of home care is provided by informal caregivers, usually unpaid family members, friends, or acquaintances, and a majority of both formal and informal caregivers are women (Stone et al.). Care is provided in the most personal and intimate aspects of daily life to persons who may be vulnerable because of physical frailty and/or cognitive impairment. Several aspects of home care other than the location in which it is provided differentiate it from institutionally based long-term care. Because care is provided in the home of the client or of another individual, the client may have a stronger sense of autonomy and control, may be more comfortable, and may have the protection and security of others in the home. However, care at home raises concerns of quality assurance in unsupervised settings and the protection of the client from unscrupulous or abusive providers of formal and informal care.

Several concerns are shared in institutional and home-based long-term care. For example, problems arise in addressing autonomous decision making for persons with diminished cognitive function. There are also stresses involved in receiving intimate care from strangers. Many persons needing long-term care encounter serious limitations in the availability of services and in the funds to pay for them. Clear methods to ensure quality in both settings are lacking. And families experience stress whether care is provided at home or in institutions. There are, however, important differences. Autonomy is more strongly asserted by many home-care patients, but home-care patients may be more isolated and thus dependent on family caregivers (Young et al.). The remainder of this article considers ethical issues that pertain to the individual receiving home care, to families, to paid workers, and to the system of care more generally.

The Home-Care Patient/Client

Chronically impaired patients, particularly elderly patients, may be at "ethical risk" of being excluded from decisions regarding their care, of having their preferences disregarded, and of having no voice in social policy decisions that affect them. This risk may result from several factors, including ageism, negative stereotypes regarding disability, misinformation, well-meaning but misguided paternalism, or reactions to spiraling healthcare costs driven in part by public spending for the old and disabled. The home setting itself may influence the nature and degree of ethical risk (Collopy et al.).

Home care may enhance the opportunity to make autonomous decisions, but it may also constrain and influence decision making. The traditional view of autonomy assumes that action is intentional, self-initiated, and not influenced by others; in reality, however, we live in a complex web of influences, including those of family members, loved ones, acquaintances, and professional caregivers. Nowhere is this web more evident than in care provided at home. Family, friends, and neighbors, as well as formal care providers, may all have an interest in the decision-making process regarding the nature and scheduling of care, the selection of workers to provide the services, and even whether or not the client can be maintained safely at home.

Safety and the assessment of risk are major considerations in the provision of home care and contribute to some of the most perplexing ethical dilemmas for providers of care. Most people of any age prefer living at home, no matter how humble or risky, to entering an institution. This preference, combined with an overestimation by some clients of their own abilities and an underestimation of the risk of living at home, frequently results in an insistence to be at home despite substantial safety concerns on the part of family and professionals.

Determination of risk is an inexact science, and it is not unusual for family and professionals to underestimate or disregard the comparable risks of institutional life. Caregivers feel strong obligation to act in the best interests of clients or loved ones by protecting them from harm, and these feelings are compounded by fear of liability should harm come to the client. While some commentators argue that fears of lawsuit have been exaggerated, they remain a powerful force in evaluating the safety of a home-based-care plan (Detzel and Kapp). An emerging model for addressing the question of risk involves "negotiating" what is an acceptable risk with the client and family by being clear about the nature of the risk and about their willingness to accept both the risk and the outcomes of negative events.

The level and nature of autonomy afforded the home-care client depends in part on the characteristics of the clients, such as their age or their cognitive or physical impairments. There are significant differences in the philosophy and organization of services for the elderly as compared to younger disabled persons (Simon-Rusinowitz and Hofland). Home healthcare for older persons tends to emphasize the avoidance of nursing home placement, to employ case management to coordinate services, and to use public regulation of providers to ensure quality of care (Eustis and Fisher). What is termed personal assistance in the support of the non-elderly disabled, however, evolved from the independent-living movement among working-age disabled persons who maintain that they are handicapped primarily by environmental barriers rather than by individual impairments or disabilities (DeJong et al.). Personal assistance encompasses a broader array of services than is usually found in medically oriented programs; it aims to maintain the client's well-being, personal appearance, comfort, safety, and interaction beyond the home. To the extent possible, these services to the disabled non-elderly are userdirected, with consumers supervising their personal care when possible. By comparison, for older clients, despite an emphasis on client autonomy, decisions such as scheduling services and selecting caregivers are made primarily by agency personnel without significant attention to consumer preferences (Hofland and David).

Clients may be motivated in several ways to control formal and informal caregivers. Clients are, after all, living in their own homes, and they are accustomed to having tasks accomplished in specific ways. They have habits and routines, and they may be supported by family members who share their preferences. Caregivers, for their part, are prompted to provide care and perform tasks not just by the wishes of the client but by their own values, preferences, work styles, and competing demands—and for formal caregivers, by the rules and regulations of their agencies and payors. Harry Moody argues that a model of decision making that focuses on accommodating and reciprocating autonomies is most appropriate in addressing these multiple interests. By this, he refers to a negotiation among competing needs and preferences. For example, a home-care client may not be able to refuse all formal care and remain at home and engage in behavior that is dangerous and disturbing to other persons in the building. He or she may, instead, negotiate staying at home with unwanted services.

Family Issues

Families are intimately involved in home care in several ways: They may be direct providers of informal services, may be involved in care decisions, or may live in the same home as the client and thus have their lives directly affected by formal care providers. While clients and their families might be expected to share values, preferences, and living styles, they often do not; sometimes, in fact, interests and values clash. For example, a family member may value safety and cleanliness more than the client does; the client may be more interested in preserving privacy and avoiding having a stranger "messing with my things." The relationship between formal and informal caregivers is poorly understood, raising concerns that the increased support of formal services may "erode" family caregiving (Hanley et al.). Ethical concerns arise when "needs assessment" for formal services includes consideration of the availability of family caregivers, as is required by law in some U.S. states. This raises the question of whether clients with family members who might provide services should be considered less eligible for home care than those with no such family members.

Conflicts may also arise about what can reasonably be expected from informal caregivers. Most families do not "dump" disabled family members into institutions but rather struggle to maintain elders at home for as long as possible. Surveys of family caregivers document a variety of stress-related illnesses, such as heart disease, stomach ulcers, and sleep disturbance, as well as alcohol or drug problems and marital difficulties (Brody). Because women are more likely to be caregivers, they carry a disproportionate share of the burden. Many women find themselves "sandwiched" between the care needs of an older parent or grandparent and the needs of a spouse, child, or grandchild. Because the extent of filial obligations is unclear, family caregivers may feel guilt and shame for not "doing enough," and persons needing care may feel either that they have been abandoned or that they are asking too much. Stephen Post argues that there are limits to familial obligations, and that social policy should do more to support the family in meeting its obligations.

Although we speak of the moral obligations of "the family," it is usually an individual family member, either explicitly or implicitly designated, who bears most of the burden of caregiving. These caregivers are usually women, most of whom have been providing care for more than five years; 35 percent of them are over the age of sixty-five, and 80 percent provide assistance every day of the week (Stone et al.). Women who provide home care to a parent, spouse, or other family member may do so at substantial personal cost, including personal health, lost professional and work opportunities, other personal interests, and other relationships. The interests of and burdens on caregivers should be considered when care plans are developed. If the care plan places heavy demands on an informal caregiver, it may justify constraints on client autonomy. Although "caregiver burden" is a well-recognized concept, Jaber Gubrium argues that we should hesitate to identify caregivers as "victims," noting that there are important factors that mitigate caregiver stress, including social supports, attitude toward caregiving prior to caregiving crises, personal well-being, a sense of mutuality between the caregiver and persons receiving care, and how prepared caregivers feel for the caregiving role (Archbold et al.; Zarit et al.).

Families differ in many ways that directly influence informal care and use of the formal system. While high levels of diversity exist within ethnic groups, differences among ethnic groups have been noted. Blacks and Native Americans have more widowed and divorced persons of both sexes than do whites, and they are somewhat more likely to live in extended family structures. There is also substantial home care provided by minority family members, attributable both to preference and to other factors, such as poverty, racial bias in the service system, and willingness to tend to young children in return for care (Brown; Cueller).

In healthcare, we tend to focus on the individual client; for most persons, however, there is a family context in which decisions are carried out. This context may constrain choices, but it also provides the individual with support and assistance that would otherwise be unavailable. Moreover, for clients whose capacity to make decisions is impaired, the family usually provides guidance in decision making (Nelson). This practice is supported in common law, and many states have enacted "family decision" laws that formalize this custom. The priority list is similar in most states: court-appointed guardians, spouse, adult children, parents, adult siblings, close friends, and extended family (Capron).

Although the family is usually viewed as a resource and source of support for the client, there are circumstances in which the family may perpetrate abuse and neglect. Protection of clients from abuse is difficult for several reasons. Abuse in the home may go undetected: The client may be unable or reluctant to report abuse due to extreme disability, fear of the caregiver, or shame. The client may be unwilling to act, preferring to stay in an abusive setting because alternatives are unknown, unavailable, or unattractive. Many states require that professional caregivers report suspected abuse of elderly persons via "elder abuse reporting laws," but responding to family failure in care is strategically difficult and ethically complex (Collopy et al.).

The Work Force

The paid work force for long-term home services consists of both skilled professionals and "unskilled" aides and personal assistants. Workers may enjoy the relationships that develop with patients and families, the opportunity to help others, and some flexibility in hours. However, workers may also face difficult working situations, travel to unsafe or dangerous neighborhoods, homes that are unclean and sometimes hazardous, and close contact with clients and/or family members who may be unpleasant, noncompliant, and even abusive. For unskilled workers such as aides and assistants, these difficulties are compounded by fluctuating schedules and hours, limited benefits, minimal training in necessary skills, and limited opportunities for promotion. The majority of home-care workers, both paid and informal, are women.

The quality of care and the reliability of workers are heavily influenced by the nature of the work, which may be monotonous and unpleasant, and by difficulties in attracting quality workers for minimum wage. In some cities, workers are drawn heavily from immigrant and/or minority populations, sometimes resulting in cultural conflicts and language difficulties between workers and clients. Clients may be uncomfortable having unfamiliar persons in their house, and workers may be treated with suspicion or hostility and confronted with racist comments. Work-force difficulties are increasingly exacerbated by the entry of women (who would otherwise provide informal care) into the paid labor force. Increased competition for workers from other service industries has reduced the availability of home-care workers in some areas. The affordability of some home-care services has been based, in part, on the low wages and benefits paid to unskilled workers, who are mostly women; this fact raises concerns regarding the exploitation of persons unable to find employment elsewhere.

The Healthcare System

Despite legislation intended to increase home-care services, restrictive eligibility requirements, perverse reimbursement incentives, and gaps in the continuum of care impede the home-care system. Not-for-profit agencies, such as the Visiting Nurse Association, face increasing competition for "attractive" clients, that is, those who are eligible for sufficient reimbursement. Hospitals, responding to reimbursement incentives, discharge patients who require heavier and more complex care. Third-party care "managers" regularly review clients' needs and have expanded paperwork and administrative reporting.

Case management, which has become an integral component of the home-care system, involves assessment of clients, determination of eligibility for public funding or insurance benefits, development of a care plan, and monitoring the quality of services (Quinn). While case management is viewed by many policymakers as fulfilling necessary gatekeeping and quality assurance functions, many home-care agencies view case management as yet another layer of bureaucracy and an additional expense in the system. Most case management agencies seek to empower clients by assisting them in implementing decisions. In their role as client advocates, case managers may find themselves in conflict with home-care agencies or family members who do not agree that the plan of care is safe, or who argue for more services than the agency can "afford" to provide under spending limits for individual clients or budget caps for groups of clients. The ethical conflicts case managers face as they balance the roles of gate keeping, quality assurance, and client advocacy are just beginning to be explored (Kane; Wetle).

Conclusion

Home care involves a complex and growing industry that is intricately intertwined with family caregiving. Most persons would prefer to remain at home, even when their need for assistance is substantial. Many persons would also prefer to give and receive care within a family context. However, the demand for home-care services can overwhelm the ability of family members to provide care in the face of other, competing family and work demands. Emerging changes in the healthcare system, including long-term-care insurance and public-healthcare reform, may encourage increased reliance on home care for persons with chronic conditions and illnesses. While additional resources for home care would be welcomed, we must be vigilant to the ethical concerns and values, not only of the home-care client but also of family caregivers and the paid work force, particularly women and disadvantaged persons. Efforts should also be made to develop formal services that are culturally appropriate and that meet the special needs of persons from diverse cultures and racial minorities.

terrie wetle (1995)

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Long-Term Care: III. Home Care

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