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Long-Term Care: I. Concept and Policies

I. CONCEPT AND POLICIES

Long-term care (LTC) is an individualized mix of personal care, healthcare, and social services for persons whose functional impairments dictate that they need help with tasks of everyday living (Kane and Kane). Consumers of LTC may live in congregate residential settings such as nursing homes, assisted living settings, adult foster homes, or board-and-care homes, but most live in their own homes and are candidates for community-based LTC programs including home care, adult day care, home-delivered meals, emergency assistance, and home renovation. LTC may be provided by paid workers, but most often it is provided voluntarily by family and friends. The need for LTC is assessed by evaluating the person's ability to perform activities of daily living (ADL), such as bathing, dressing, using the toilet, getting in and out of bed, eating, and performing household and other practical tasks including cleaning, cooking, shopping, managing money, and transporting oneself. LTC services correspond directly to measured impairments in ADL performance and to other functional impairments. People may choose to purchase similar services for convenience alone, but a service is defined as LTC only if a measurable disability prevents the RAK (people receiving care) person from performing the given task.

Most LTC consumers are elderly and, indeed, well over age seventy-five. But many younger people also need and receive LTC. These include physically disabled adults with conditions such as multiple sclerosis, spinal-cord injuries, head injuries, and late-stage cancer; persons with late-stage acquired immunodeficiency syndrome (AIDS); technology-dependent, severely disabled children; and persons of all ages with developmental disabilities such as cerebral palsy. Anyone who needs and receives help with everyday functioning because of a disability may be considered to be receiving LTC. They may, of course, also receive preventive and curative acute medical care from time to time. Some disability activists prefer to replace the term LTC with a substitute such as "long-term services," both because LTC is often equated with nursing homes in the popular mind and because they prefer to distinguish the emotional and nurturing aspects of "care" from the concept of services.

The goals of LTC may be multiple and often are ambiguous. Sometimes the goal appropriately includes rehabilitation or improvement of the consumer's functional abilities, but frequently the most reasonable goal is to enable consumers to live as meaningfully as possible given their impairments, abilities, interests, and life-cycle stage and roles. Sometimes LTC providers treat the LTC services (e.g., bathing assistance and cooking, or any particular mix of services in the plan) as the actual goal of LTC. Other LTC programs promulgate ambitious goals, for example, that LTC consumers should be well satisfied with life and score well on absolute indicators of well-being or social adjustment. In either case, practitioners and policymakers struggle to attend to rehabilitation possibilities while avoiding grandiose or intrusive goals. For service providers to assume responsibility for global outcomes of someone's life along with their provision of routine services requires some hubris, and LTC professionals are perplexed about how comprehensively to cast their goals.

A number of other factors make LTC unique. LTC is an enterprise in which the services are diverse though often ordinary, the providers are diverse (including professionals, paraprofessionals, and family members), the clientele is diverse, and the goals are often unclear. Furthermore, much LTC, and most publicly subsidized LTC, takes place in nursing homes, where the functionally impaired consumer may have been involuntarily relocated, and the high cost of LTC in residential settings and in the community is of concern to private and public payers. Finally, LTC is a women's issue because the consumers, the family caregivers who are pressed into service, and the paid caregivers are predominantly female. Of course, husbands give care to their wives as needed, but the typical LTC consumer is a widow, and the typical family caregiver is a wife, a daughter, or a daughter-in-law.

Trends in the 1990s and Early 2000s

Several trends in the United States during and following the 1990s have also helped shape the key ethical issues involving LTC. In the United States, publicly funded LTC is usually offered on a means-tested basis and is a matter of state rather than federal policy (although the Medicaid program matches state funds and sets some broad program parameters). State governments expend most of their funds on care in nursing homes, although consumers prefer to live anywhere else. The magnitude of this disproportionate spending has receded somewhat since 1990, and a concomitant growth has occurred in what is called the home- and community-based services (HCBS) sector. Three elements are highlighted: the growth of assisted living, the promotion of consumercentered approaches to care, and the pursuit of LTC as a civil right for persons with disabilities.

Assisted living is an umbrella term for a variety of residential settings that provide or arrange care and are not licensed as nursing homes. They have proliferated, partly because of consumer interest in alternatives to nursing homes. At their best, assisted living settings combine a high level of privacy and autonomy-enhancing architectural features with a capacity to provide substantial care to residents in their own assisted living apartments. At their worse, they fail to offer high privacy or high service or both, they are costly, and they evict residents when they have real care needs. The presence of almost a million assisted living units by 2002, and the coverage of the services provided or arranged by assisted living programs in most states (Mollica), has given rise to concerns about quality, punctuated by highly publicized scandals in the print media and a 1999U.S. General Accounting Office study showing that consumers had poor and incomplete information prior to purchase. The extent to which the federal government should regulate assisted living programs and how they should be regulated is now a matter of spirited debate.

Consumer-directed care and consumer-centered care are slogans that reflect a growing sentiment that the users of services should as much as possible direct the nature of those services and that their views should be solicited for quality reviews and program development. At the extreme end of this view, advocates suggest that funds for services be provided directly to consumers or their agents, who would then hire, train, supervise, and dismiss care workers. Advocates of this view prefer the use of personal attendants or personal assistants to home care from agencies. In some European countries, notably Germany, cash is offered in lieu of services in LTC insurance programs, and the United States launched in the late 1990s a randomized trial of the effectiveness of cash with the cash amount established as somewhat less than the average cost of service plans versus services for HCBS under Medicaid. Care patterns that emphasize the authority of the consumer, however, raise problems about the rights of paid care workers, who themselves have been making strides toward collective bargaining.

Finally, the Americans with Disabilities Act (ADA) of 1990 provided leverage for social action related to LTC in a different vein than advocacy for better health and human service programs. In the closely watched Olmstead v.L.C. case, the U.S. Supreme Court in 1999 enunciated a right to care in the most integrated setting based on the ADA (although the right was circumscribed by vaguely stated requirements for "appropriateness"). This brought the Office of Civil Rights into the business of enforcing decisions related to quality of care (Rosenbaum; Rosenbaum, Teitelbaum, and Stewart). Younger persons with disabilities, even people with developmental disabilities and mental retardation, have made greater progress toward care outside of institutions than have older people. Comparisons between HCBS received by seniors and younger people with disabilities reveal sharp discrepancies; for example, the former often must be homebound to get publicly funded help at home, whereas the latter can use publicly funded personal attendants to help them leave their homes. Some argue that older people prefer the more secure; institutionally based services, but others suggest ageism is at work in the discrepancies. Also, older LTC consumers tend not to perceive themselves as being disabled and having rights under the ADA. Possibly the options and services would be better for seniors if pursued as a rights issue rather than as a healthcare quality issue.

Ethical Themes in LTC

Nine interrelated themes can be identified that give rise to ethical dilemmas for those who provide, administer, plan, or finance LTC.

INTIMACY OF LTC. Whether it is provided in consumers' own homes or in group residential settings, LTC is inextricably tied to daily routines. The way it is provided literally affects how LTC consumers live, where they live, whom they see, and how they spend their time. Ethical issues arise concerning the extent to which personal preferences and wishes should be honored, especially when they conflict with operating procedures of a caregiving organization or when they entail public costs. For example, should a person receiving home care be permitted to establish the timing for getting up and going to bed, even if this requires an attendant to visit late in the evening? Because LTC plans can be so comprehensive and intrusive, many believe that the consumer should be given as much choice and control as possible. Further, George J. Agich suggested in his 1993 book, Autonomy and Long Term Care, that a legalistic ethic based narrowly on the right to noninterference ignores the existential reality of LTC. He argued that respect for autonomy must include provision of meaningful choices and maintenance of personal identity. Writing largely about nursing homes, Bart Collopy, Philip Boyle, and Bruce Jennings also argued for a view of autonomy that takes into account "the moral ecology" of LTC settings. A large ethnographic and anthropological literature offers insights into the complexity of this moral ecology, that is, the settings and arrangements of care (Henderson and Vesperi).

With its focus on intimate, repetitive tasks and assistance with bodily functions that adults usually handle independently and privately, LTC can profoundly affect the dignity of the consumers and alter their sense of personal identity and worth. Cognitively intact LTC consumers may retain a keen sense of privacy concerning their bodies, their possessions, and even information about themselves. Assembly-line approaches to dressing, toileting, and bathing may be perceived as demeaning. Questions arise about how much energy LTC providers should be obliged to expend protecting the dignity of consumers and helping them preserve their sense of identity. Even if consumers are cognitively incapacitated and completely helpless physically, many believe it is wrong to subject them to procedures that are inherently undignified.

DEPENDENCY OF LTC CONSUMERS. Functionally impaired people are, by definition, dependent to some degree. Some people receiving care, though they may have the ability to conceive, plan, and choose actions, are virtually helpless to initiate or carry out actions. This creates a paradox: The more physically dependent the LTC consumers, the more they must depend on the help of others to exercise autonomy. Although providers taking a rehabilitation stance may strive to have consumers do things for themselves, respect for the consumer's autonomy dictate that great care be taken in fulfilling requests. Striking the right balance between encouraging independence and providing help is an ethical issue for LTC providers.

GROUP-LIVING SETTINGS. When LTC is provided in a collective, residential setting, the needs and interests of residents can collide. Residents in group settings are always expected to modify their individual wishes and behaviors to adjust to collective situations, and such expectations are usually well understood by all who enter such a setting. But it is unclear what rules of conduct and mutual expectations should govern a nursing home, an entity that is neither a hospital nor a housing unit. To some degree, the facility's search for efficient routines defines permissible behavior and opportunities for nursing-home residents.

Typically, nursing homes accommodate, in multiple-occupancy rooms and close quarters, residents who are markedly varied in physical ability, cognitive ability, prognosis, age, social class, interests, and personal taste. Some now question, however, whether continuing to house residents in shared quarters is ethically justifiable. One reason why assisted living is attractive in the private market is the greater availability of singly-occupied quarters; as states begin covering assisted living services under Medicaid, they face a decision about whether to fund privacy as a minimum expectation or to encourage a two-class system of assisted living with publicly subsidized clientele living in boarding home situations. The advent of assisted living also challenges the very nature of congregate LTC and obfuscates the boundaries between home care and institutional care. If assisted living consumers are viewed as tenants of their own apartments, where they receive services as well, then laws pertaining to fair housing may prevent providers from moving them to a reputedly higher care setting such as a nursing home.

Nursing homes themselves are in considerable ferment about how to adapt to the current LTC world. A social movement, originally called the Nursing Home Pioneers, gained momentum in the 1990s. Dedicated to culture change in nursing homes, those identified with the Pioneers recommend a variety of remedies, including empowering the line staff, flattening nursing-home hierarchical structures, and refashioning the physical settings into smaller neighborhoods and households (Lustbader). Within this group are proponents of specific changes such as the Eden Alternative (Thomas), an approach to combat boredom, loneliness, and lack of meaning in nursing homes; and the Wellspring model, a version of continuous quality improvement directed at empowering nurse's aides (Stone et al.). Many of these developments are antithetical to more traditional approaches to nursing-home reform proposals such as establishing higher nursing-staff–to–resident ratios and vigorously enforcing quality of care standards.

FAMILY ROLES. LTC is inevitably a family affair. Family members provide most of the care given to people at home. Indeed, much paid home care is organized explicitly to give relief, assistance, or training to family members, who in turn are expected to do most of the work. Questions arise about what is right to expect of various family members, and even whether older persons should be forced to accept, against their will, help from a family member. One also wonders whether family anxiety for a relative's safety should lead to the placement of that relative in a nursing home. On the personal level, LTC evokes questions about the duties and rights of spouses, parents, adult children, and other relatives.

In practice, LTC providers, and especially case managers who coordinate and allocate care, sometimes view the whole family constellation as the client, especially if all the family members are elderly or if they live in the same household as the person getting care. But family members' interests are not always identical to those of the consumers, nor are their intentions always benign. For example, nursing-home staff often find that family members disagree with each other about the resident's care. They also sometimes note that the decisions of family members are motivated by an interest in minimizing the costs of care. Nursing-home personnel, who may themselves have a conflict of interest involving payment and money management, for example, when their recommendations entail more payment to the nursing home, often turn to the state's nursing-home ombudsperson to resolve such disputes. Home-care providers and state-designated case managers who purchase publicly subsidized home care also often disagree with family members about the type and amount of care needed and about whether a nursing-home admission is in the LTC consumer's best interest.

END-OF-LIFE ISSUES. Death typically occurs during a period of LTC, either at the end of decades of care or after a relatively short episode. For this reason, many of the issues about death that confront acute-care providers also arise in long-term contexts, including the use of cardiopulmonary resuscitation, starting or stopping a respirator, or starting or stopping tube placement for nutrition and fluid intake. Issues of active or passive euthanasia also arise, which in turn evoke basic questions about the extent of the obligation of the healthcare professional to preserve life on the one hand and to avert suffering on the other. It is a challenge to give proper, systematic attention to end-of-life issues in LTC, while also giving weight to the everyday ethical matters that shape the quality of LTC consumers' lives (Kane and Caplan, 1990).

RISKS, RISK AVERSION, AND LIABILITY. Functionally disabled people are frequently unable to protect themselves against outside dangers such as fending off an intruder or escaping from a fire. Increased risks are associated with the simplest activities—walking to the bathroom, getting out of bed, or boiling a pot of water. People with precarious physical health may be at increased risk of a fall or of a sudden health incident, such as a stroke or heart attack, that needs immediate attention. If the LTC consumer suffers memory loss, the risks to safety because of forgetfulness or bad judgment increase. At the same time, supervision and surveillance exact a high price in both dollars and personal freedom.

In every type of LTC, questions arise about when it is right to leave a vulnerable person unprotected and subject to risk. The corollary question, asked less often, is when is it right to force a functionally impaired person to accept protection and eliminate risks, even risks the person prefers to take. The extreme example of restricting people for their own protection is the use of physical restraints, which were formerly ubiquitous in nursing homes but have been curbed by regulatory changes following a highly publicized Institute of Medicine study, published in 1986, on the quality of LTC settings. Sedatives and psychoactive medications also have been used as a form of restraint and behavior control, presumably for safety reasons. On a less dramatic level, numerous organizational routines and professional practices and decisions designed to keep a consumer safe also restrict personal freedom and may conflict with consumer preferences. Although attorneys point out that LTC providers have rarely been sued successfully for injuries sustained by a consumer while the consumer was pursuing an expressed preference or choice, the fear of liability is pervasive in LTC industries (Kapp).

A concept variously called negotiated risk agreement, negotiated risk contracting, or managed risk agreement has gained prominence since the early 1990s as a mechanism for LTC consumers or their agents to take conscious risks and behave in a way that professionals fear endangers their health. Based on contractual principles, the notion is that the consumer who had been informed of risks related to certain behavior should be able to take those risks unless the well-being of others is clearly threatened. This is an emerging area of practice that has advocates and many detractors; it raises the potential for adjusting the power balance somewhat in favor of the consumer, but raises the specter of provider negligence masquerading as respect for autonomy. The effort to put negotiated risk agreements into place sharply reveals the flimsy information base for many of the risks that are guarded against in LTC (Kane and Levin; Kapp and Wilson).

PROFESSIONAL STANDARDS AND PARAPROFESSIONAL ROLES. It is a truism that ethical care must be competent care. The codes of ethics that govern health professionals generally require that health professionals act within the framework of correct and up-to-date scientific knowledge and that they comply with the standards of adequate professional practice. Such judgments are easier to make about specific medical and nursing procedures than about the more amorphous and less specialized services of LTC, even when professionals are delivering the services. Without clear criteria for an adequate assessment of LTC needs or a competent care plan for a person with particular characteristics, it is difficult to promulgate standards or hold any one individual accountable.

One might argue that standards for care be set high and held to rigidly, to ensure safety. The more particular educational and other standards (e.g., caseload size) are mandated, however, the higher the cost of services. Professionals may unwittingly deny services to some older persons by advocating standards that inflate prices. Because professional self-interest usually accompanies concern for consumers in advocacy for professional standards, this subject has ethical import. Also, the more rigid the standards, the less flexibility there is for consumers to work out plans that suit their individual preferences.

The mainstays of LTC are the nursing assistants, home-health aides, homemakers, chore workers, and personal-care attendants who do the bulk of the difficult, labor-intensive, sometimes unpleasant work. Little consensus has been reached about either the responsibilities of the paraprofessional LTC worker or the extent to which the worker should be expected to do independent problem solving. Historically, little attention has been paid to the rights of the paraprofessional worker, who is typically paid a poor wage and sometimes faces substandard working conditions in people's homes. The worker may also suffer verbal or physical abuse from consumers or their family members. The care providers are often members of ethnic or racial minority groups serving a largely white, middle-class clientele. With the movement toward consumer-directed care that began in the early 1990s, however, the rights and needs of workers have been raised as a major obstacle to such consumer control.

RESOURCE LIMITATION. Decisions about what ought to be done must take costs into account, particularly when governments pay or subsidize payment of the bills. For each element of LTC services and programs, one can ask whether it is worth the money, compared to other good uses for the resources. Limited resources result in fewer caregiving staff in residential facilities, poorly paid home-care attendants or limited hours of home care for each person, less space, less privacy, and less personal attention overall.

A scarce resource might be a single room in a nursing home or an extra half hour of attention at home. Without explicitly translating cost-consciousness into human terms— such as the numbers of baths or assisted trips to the toilet an LTC consumer is entitled to or the number of minutes an LTC consumer should have to wait after pushing a call button—authorities tacitly accept that the resources available are limited and that resource constraints will compromise the best care for functionally impaired persons.

INTERGENERATIONAL ISSUES. Finally, LTC forces consideration of what an ethical society should offer to older people. Older people—people over seventy-five—are by far the most numerous group needing LTC, but the lifetime costs of LTC may be greater for a younger person. Some LTC planners ask whether the claims on society for care of a younger person with a disability and an older one are different in kind, degree, or justification.

Although justifications are often made for caring for older people based on reciprocity across the generations, the elderly are given resources and encouraged to manage their own care less often than are younger persons with disabilities. Indeed, political action among younger persons with disabilities has led to changes for older people receiving community LTC. In the 1980s and early 1990s, several states restructured their LTC programs under Medicaid and state financing to include adults of all ages with disabilities. As a result, these administrators now need to determine how to allocate resources fairly among consumers of widely different ages and circumstances. Advocacy groups representing younger persons with disabilities argue for a model of LTC that gives more power to the LTC consumer or his or her agent (Litvak, Zukas, and Heumann). Such groups prefer a social rather than a medical model of care that would, as much as possible, relegate to the consumer the prerogative of selecting, training, supervising, and firing those who provide personal care. A personal-care assistant who accompanies the consumer as needed is perceived as liberating, whereas home care was seen as restricting. Authorities disagree about whether the personal-assistant model is desirable or feasible for the much larger group of elderly LTC consumers.

Policy Issues

As with acute care, LTC poses interrelated problems in access, quality, and cost. Access to care is uneven because of geographic variation in supply and price. Care is most available in the least-preferred nursing-home form, because that is the form that is publicly subsidized. Quality concerns are present for both nursing-home care and home care. Public and private costs are high. Reimbursement methods and levels for LTC often create perverse incentives. Flat-rate systems discriminate against those who need the most care. At the same time, "case-mix-adjusted" systems, which increase payment for persons with greater disabilities, provide clear incentives against rehabilitation (Kane and Kane).

BENEFITS AND COVERAGE. The 1.9 million U.S. nursing-home residents represent about 5 percent of the country's elderly population. It is estimated, however, that an additional 10 percent of the elderly population have comparable functional impairments requiring LTC (Wiener, Illston, and Hanley). In contrast to many other industrialized countries, publicly funded LTC in the United States is available only to persons of low income, and, moreover, the vast bulk of public LTC expenditures are for nursing-home care. Despite expectations that LTC costs be met first by the consumers themselves, at least 50 percent of nursing-home costs in the United States are borne publicly (largely through Medicaid), because private resources are quickly exhausted. The public share of the costs also increases because some older people, to qualify for Medicaid, divest their resources in the years before they expect a nursing-home admission. The extent to which divestment increases public costs has been sharply debated. Publicly financed home-care benefits, though they became more widely available in the 1980s and 1990s, accounted for a relatively small outlay and were used by relatively few consumers. Further, almost all publicly funded home care has been capped at a rate less than the rate of public reimbursement for nursing-home care for the same consumer in the same state.

Nursing homes are perceived negatively. People do not want to live in them, send their family members to them, or expend their life savings and deplete their estates to pay for them. If the LTC-service setting were less aversive in terms of unappealing settings, rigid routines, and high costs, presumably some who now depend on volunteered family help would use paid LTC. This consideration dampens the enthusiasm of officials for expanding home-care benefits; they fear that home care, rather than substituting for nursing-home care, would be received by people formerly receiving uncompensated care from families.

Private LTC insurance is financially viable for only a fraction of the group at risk (Rivlin and Wiener). Both private insurers and public policymakers worry that if benefits were more desirable, they would be heavily used. After all, some LTC services (e.g., cooking, housekeeping, laundry) are intrinsically desirable even for people without LTC needs. Moreover, despite earlier beliefs, research has conclusively shown that at certain disability levels home care is more expensive than nursing-home care (Carcagno and Kemper). Economies of scale are achieved when brief, intermittent services and protective oversight are offered in centralized locations.

When community-based LTC is financed through Medicaid or state appropriations, case managers, usually social workers or nurses, typically perform initial assessments, authorize payments for home care, and monitor the quality of care and its continuing appropriateness. The case-management role promotes equity and efficiency in the use of benefits across a population but also creates a powerful agent, involved in the allocation of benefits, who may have no clear professional ethic, training, or authority. Home health agencies often complain that interposing a case manager between them and their clientele is wasteful and interferes with consumer choice; state officials argue that case managers who are separate from service delivery provide a disinterested advocate for the consumer. Juggling the roles of advocate and gatekeeper creates ethical tension for the case manager (Kane and Caplan, 1993). Case managers often have difficulty reconciling these roles but, at a minimum, should disclose to consumers the assumptions under which they work. In the early 1990s and before, informed-consent processes for case management were rudimentary.

Reimbursement issues are confounded by confusion about the extent to which LTC is a health program. In the United States, healthcare is considered a public responsibility (at least in part), whereas housing and social services are typically considered private responsibilities to be purchased with private income and with government subsidies for the poor. LTC includes social services and, when provided in nursing homes, housing. Policymakers have not determined whether they should extricate these components for financing purposes, or how to do so. Assisted living programs, such as those developed in Oregon in the early 1990s (Kane and Wilson), combine housing and board with service to functionally disabled, nursing-home-certifiable tenants in private apartments with kitchenettes, full baths, and doors that lock from the inside. Such programs may use outside home-care agencies to deliver the care, and in many states Medicaid reimburses the service component. This blurs the distinction between institutional care and home care. It also permits separating the financing of the room and lodging from that of the personal-care and nursing services, so the latter can be funded publicly and the former privately.

LTC costs and payment are also complicated by unclear boundaries between LTC and primary healthcare, acute hospital care, and post-acute care. Medicare, the universal health insurance program for persons over sixty-five, covers rehabilitation, skilled nursing-home care, and skilled home care in the immediate aftermath of an acute illness. These types of services, known as "post-acute" or "sub-acute" care, fall in an ill-defined area between acute care and LTC. Efforts to save money in acute care and post-acute care—for example, through earlier hospital discharge or denial of Medicare claims for post-acute care—can result in higher LTC costs. Demonstration projects have paid a per capita rate to care providers who are then responsible for both acute care and LTC costs; the projects are meant to determine whether better or more efficient use can be made of the total dollars when acute care and LTC are integrated into a single program. The social health maintenance organization is one such model, and another is the Program of All-Inclusive Care for the Elderly, which was modeled on an innovative program in San Francisco's Chinatown that uses a day healthcare center as a key feature.

STANDARDS, REGULATION, AND QUALITY. The more professional standards are exacted for LTC services and the more providers are regulated, the more expensive LTC becomes. Because family members provide much LTC, some state policymakers suggest that professional-practice acts in most states are unduly restrictive in their requiring licensed nurses for many procedures routinely done by family caregivers. Others believe that vulnerable LTC consumers need protection by high standards for professional practice and managed professional supervision of nonprofessionals. This issue is salient because many LTC consumers would like to purchase cost-effective services. The break-even point, at which the price of community services exceeds that of home-based services, can be reached rather quickly and is influenced not only by the disability levels of the consumer but also by the price of the services. These, in turn, are influenced by regulations governing professional practices and agency licensure.

Regulation of care providers such as nursing homes and home-care agencies through state licensure, quality inspection, and federal certification programs also drives up costs, stifling innovation and consumer choice. Protection of vulnerable adults and avoidance of politically damaging incidents fuel these efforts. The supply of nursing homes is also regulated to stimulate community care and to save money (on the theory that a licensed bed will be used). This form of regulation has been criticized by those who believe that if market forces prevail, quality will improve.

Regulation of care settings, especially residential settings with great potential to affect quality of life, is hampered by disagreement about what should be included in the definition of quality and how various components of quality should be weighted. Although quality of life can be measured through direct interview with residents, including those with substantial cognitive disability (Kane et al.), the usual methods of accountability give greatest credence to low rates of negative health outcomes such as bedsores, infections, and weight loss. An Institute of Medicine committee charged to study the quality of LTC reported in 2001 that the field is characterized by profound disagreements about the very nature of quality; indeed, these very disagreements led to the inclusion of a minority report by committee members that placed higher emphasis on quality of life and consumer control as elements of quality (Wunderlich and Kohler).

FAMILY POLICY. Case managers make implicit and explicit decisions about the ability of family members to provide help before allocating publicly funded services to LTC consumers. LTC policymakers do not want to replace family care with public programs but want to protect families from undue burden. Respite programs have been developed specifically to provide episodic or emergency assistance to family caregivers. Various forms of compensation for family members have been suggested, ranging from tax credits to direct payment. In some states, LTC consumers have received cash payments, which they, in turn, can and often do use to pay relatives. Supporting these strategies, Nathan L. Linsk and his colleagues, in their 1992 book, Wages for Caring, noted the irony of paying strangers but not relatives. Direct payments to family caregivers are also seen as an income transfer to poor families. Opponents of family payment cite the cost implications. A midway position argues for family payments only when the caregiver has left the labor force to provide care—disqualifying most retirementage spouses—and only for low-income families.

LTC LABOR FORCE. Paraprofessional workers in nursing homes and, more particularly, in home care, may receive minimum wages and no benefits. The cost implications of paying the workers an adequate wage are enormous. Although advocates of greater LTC benefits for senior citizens historically ignored the situation for workers, in the 1990s groups such as the Older Women's League formally recognized the condition of care workers as an issue. The very persons who perform the hands-on LTC tasks—typically, persons with low wages and nonexistent benefits—will become at risk for needing LTC themselves, without any personal financial reservoir from which to draw.

Conclusion

With the aging of the population and the chronicity of disease, long-term-care policies may be expected to continue to receive great attention. Many specific policies are in flux, and thematic and policy changes may be expected in response to current debates. The nagging questions about how a society can meet the ordinary needs of people with functional impairments competently, efficiently, and fairly— without compromising the autonomy and quality of life of the clientele—are likely to endure.

rosalie a. kane (1995)

revised by author

SEE ALSO: Abuse, Interpersonal: Elder Abuse; Aging and the Aged; Alternative Therapies; Autonomy; Care; Compassionate Love; Dementia; DNR; Grief and Bereavement; Healthcare Resources, Allocation of; Human Dignity; Informed Consent; Life, Quality of; Life Sustaining Treatment and Euthanasia; Medicaid; Medicare; Mentally Disabled and Mentally Ill Persons; Moral Status; Nursing, Profession of; Profit and Commercialism;Surrogate Decision-Making; and other Long-Term Care subentries

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