1

Introduction

The quality of care in nursing homes and other long-term care settings is a major concern for local, state, and national policy makers and is becoming an ever-pressing issue. Recent reports of poor conditions in nursing homes1 have captured national attention and raise questions not only for providers but also for the state and federal agencies responsible for ensuring quality of care in these settings. In 1986, the Institute of Medicine (IOM) Committee on Nursing Home Regulations issued its report Improving the Quality of Care in Nursing Homes. Its recommendations provided the basis for Congress to enact a major reform of nursing home regulations embedded in the Omnibus Budget Reconciliation Act of 1987 (OBRA 87). The legislation was refined through subsequent enactments in 1988, 1989, and 1990. The Health Care Financing Administration (HCFA) issued the enabling regulations in 1990, which were implemented in 1990 and 1991. The enforcement regulations were issued in 1994 and became effective in July 1995. OBRA 87, and its implementing regulations, substantially extended and reshaped the regulation of nursing homes aimed at improving the quality of care provided in these facilities.

Since the IOM issued its 1986 report, many changes have occurred. Long-term care is no longer synonymous with nursing home care. The

1  

Throughout the report, the terms “nursing home” and “nursing facility” are used interchangeably.



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Improving the Quality of Long-Term Care 1 Introduction The quality of care in nursing homes and other long-term care settings is a major concern for local, state, and national policy makers and is becoming an ever-pressing issue. Recent reports of poor conditions in nursing homes1 have captured national attention and raise questions not only for providers but also for the state and federal agencies responsible for ensuring quality of care in these settings. In 1986, the Institute of Medicine (IOM) Committee on Nursing Home Regulations issued its report Improving the Quality of Care in Nursing Homes. Its recommendations provided the basis for Congress to enact a major reform of nursing home regulations embedded in the Omnibus Budget Reconciliation Act of 1987 (OBRA 87). The legislation was refined through subsequent enactments in 1988, 1989, and 1990. The Health Care Financing Administration (HCFA) issued the enabling regulations in 1990, which were implemented in 1990 and 1991. The enforcement regulations were issued in 1994 and became effective in July 1995. OBRA 87, and its implementing regulations, substantially extended and reshaped the regulation of nursing homes aimed at improving the quality of care provided in these facilities. Since the IOM issued its 1986 report, many changes have occurred. Long-term care is no longer synonymous with nursing home care. The 1   Throughout the report, the terms “nursing home” and “nursing facility” are used interchangeably.

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Improving the Quality of Long-Term Care use of alternative noninstitutional settings for long-term care has increased to include home health care, personal care, residential care, and care management and other services. Within institutional settings such as nursing homes, specialized units often termed “ special care” units and “subacute care” units have emerged in an effort to meet the needs of subgroups of residents such as those with Alzheimer's disease or with relatively short-term post-acute care needs, respectively. Over the past decade, federal Medicare policies dramatically expanded and then more recently contracted coverage for home health care. Moreover, the increased use of preadmission screening for nursing homes, the expanded role of Medicaid home and community-based waivers, the introduction of Medicare and Medicaid managed care programs, the general trend toward prospective payment and more rapid discharges from hospitals, and the emergence of various long-term care provider industries, all have altered the patterns of long-term care. These arrangements also offer more alternatives for long-term care users and their family members. This expanding range of services and service settings reflects, among other things, better understanding of the preferences and values of people needing long-term care; medical and technological advances that allow more care to be provided outside hospitals and other institutions; and pressures to cut costs by shifting more care from hospitals to other settings that are thought to be less costly. Managed care organizations have not been major participants in long-term care delivery, but their decisions about hospitalization, home care, rehabilitation, and similar matters have spillover effects to the long-term care sector. Changing cultural perspectives about people with long-term care needs also are influencing the nature of long-term care. These individuals are being viewed as people not only with needs and vulnerabilities but also with preferences to retain some control over major elements of the care they receive. As encouraged by the 1986 IOM report and by others, assessment of the quality of long-term care increasingly includes attention to the quality of life, including satisfaction with care, experienced by those receiving such care. LONG-TERM CARE NEEDS The implications of the aging of the population for the demand for long-term care and for the widespread public and policy focus on the elderly population in discussions of such care are a long-standing concern. The U.S. population is aging and the elderly population is growing older. The population aged 85 years and older is the fastest-growing age group in the United States, and it is the most rapidly growing age group among the elderly population. Most of the increase in demand for long

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Improving the Quality of Long-Term Care term care services is expected to occur when the “baby boom” generation enters the elderly ages. The first of this generation will reach age 65 in the year 2011 and the last will do so around 2030. The proportion of the population aged 65 or older is expected to increase from 13 percent in 1996 to 20 percent in 2030, and the number of people in this age group is projected to more than double, from 33.9 million to 69.4 million (Census, 1996). During this same period, the number of people 85 years of age and older is expected to more than triple, increasing from about 2.3 million to about 8.8 million, and will continue to grow as the baby boomers reach these oldest ages. This rapid growth in the oldest-old population (85 years and older) will have a major effect on the demand for and supply of long-term care services and the resources needed to provide these services. Friedland and Summer (1999) project that by 2030, between 10.8 million and 14 million older Americans will need long-term care, and between 4.3 million and 5.3 million of these will need nursing home care. An important question for long-term care planning is whether people will experience disabling conditions and need long-term care for a smaller fraction of their years in old age compared to their predecessors. The older population today, on average, is in better health than its counterpart of a few decades back. Recent analyses have reported declines in the prevalence of chronic disability among elderly people, with declines greater in recent (1989–1994) than in earlier (1982 –1989) years (Manton et al., 1993, 1997; Singer and Manton, 1998). These findings have led some to suggest that the increasing number of older people may not bring a corresponding magnitude of increase in the number requiring long-term care. Although their overall health has improved, many elderly persons are dependent and frail with one or more chronic conditions and the consequent disabling conditions that increase with age. Some of these conditions may be life threatening; others affect quality of life. Also, with life expectancies continuing to rise for most groups, a larger proportion of people lives to age 90 and beyond. Hence the absolute number of years that people with disabilities require long-term care is likely to grow substantially, even if significant declines in disability rates are assumed. Although long-term care conjures up the image of the elderly person in a nursing home, it is not limited to the needs of older persons. This need can arise for any age group—children, adolescents, and younger adults. Nearly 58 percent of people with limitation of activity caused by a chronic condition or impairment are of working age; about 32 percent are elderly, and approximately 10 percent are children (Trupin and Rice, 1995). The number of children and adolescents with severe long-term health conditions, although small in comparison to the elderly, has grown substantially over the past two decades and will continue to do so. They include children with chronic conditions and those who are dependent on

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Improving the Quality of Long-Term Care technology. Advances in medicine and surgical technologies now allow many children who would have died in previous eras to survive to adulthood, although often with psychological and physical impairments. Continuing improvements in medical care that allow more children and nonelderly adults with serious congenital or chronic disorders and injuries to survive for longer periods also are likely to contribute to a growing demand for long-term care services. Such care for children requires more than a scaled-down version of care for adults; it requires provision of social support services and coordination with the educational system. Others with long-term care needs that differ from those of the elderly include a growing population of physically and developmentally disabled 2 adults, some of whom have outlived the ability of their aging parents to care for them. This group includes both individuals who have always lived in the community and those who formerly lived in institutions, sometimes until legal action prompted states to support noninstitutional alternatives for their care. People with severe and persistent mental and cognitive problems also have distinctive long-term care needs (Kuntz, 1995; Levin and Petrila, 1996). Over time, they may cycle through alternating periods of needing long-term care services and being able to function without them. Continuing Concerns About Quality Concerns about problems in the quality of long-term care, especially care in nursing homes, persist despite some improvements in recent years. The nursing home sector in particular remains the focus of continuing concern about the quality, cost, and accessibility of care and the adequacy of oversight and enforcement mechanisms. These concerns are reflected in, and spurred by, recent government reports, congressional hearings, newspaper stories, and criminal and civil court cases (GAO, 1998a, 1999a–e; HCFA, 1998a; OIG, 1998). Consumers often dread the loss of control signaled by admission to a nursing home and express anxiety about quality of life. Debate also continues over the effectiveness and appropriate scope of state and national polices to regulate long-term care, reduce 2   For purposes of determining eligibility for government programs, developmental disabilities, originally defined on a condition-by-condition basis (e.g., mental retardation, cerebral palsy), are now defined as severe, chronic functional limitations that are due to mental or physical impairments, manifested before age 22, and likely to continue indefinitely (Braddock et al., 1998). The limitations must affect three of seven areas of major life activities: receptive and expressive language, learning, mobility, self-care, self-direction, capacity for independent living, and economic self-sufficiency. The majority of those with developmental disabilities are mentally retarded.

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Improving the Quality of Long-Term Care poor performance of providers, and improve the health and well-being of those receiving care. These questions and debates extend beyond nursing homes to home and community-based services and residential care facilities, with emphasis on contracting and disclosure practices, consumer education, and staff training. THE IOM STUDY Committee Charge Now, more than a decade since the 1986 IOM report, it is timely to take another look at the state of quality in long-term care and to consider quality assessment and improvement strategies. In the context of evolving long-term care options and needs and persistent concerns about the quality of nursing home care, the Robert Wood Johnson Foundation requested the Institute of Medicine to undertake another examination of the quality of long-term care provided in nursing homes and other long-term care settings. Additional support was provided by the Archstone Foundation, Irvine Health Foundation, Department of Veterans Affairs, and Health Care Financing Administration. The IOM was asked to examine the following: the demographic, health, and other characteristics of individuals requiring long-term care; the roles of different long-term care settings in community health care systems, and the movement of people among long-term care and other settings (their relationship to other components of community care systems); the current quality of long-term care settings and the extent to which this has improved or deteriorated in the past 10 to 15 years; the impact of regulations, especially the Nursing Home Reform Act of 1987 (OBRA 87), on such matters as the use of physical and chemical restraints, advance care planning, provision of adequate nutrition, identification of substandard facilities or programs, and public access to information on quality of care; and the strengths and limitations of existing approaches to measure, oversee, and improve quality of care and outcomes in nursing homes and other long-term care settings and ways of improving them to promote better quality of care and other outcomes, regardless of setting. The broad mandate of this study reflects the evolution of long-term care since the 1986 committee report was issued. The IOM appointed a committee of 17 members representing a range

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Improving the Quality of Long-Term Care of expertise related to the scope of this study. The members of the committee consisted of academic health professionals, researchers, health providers, and long-term care advocates. This report presents the results of the examination by the committee, which began its work in early 1997. Study Method The committee examined the statutory requirements for long-term care services; conducted extensive reviews of research literature and empirical evidence; and gathered information during site visits, a public hearing, and two workshops. It relied mainly on existing information from a variety of sources, reviewing and analyzing research literature on the varied topics covered in this report. From early 1997 to April 2000, the committee met on eight separate occasions to discuss long-term care dynamics with a focus on quality. Some of these meetings consisted of workshops that were open to the public. They provided an opportunity for the committee to expand its perspective and views by obtaining a wide range of opinions from interested and concerned groups—such as health care associations and advocacy groups from skilled nursing facilities, home health agencies, and assisted living agencies—on matters under consideration, especially ideas and concepts of how the presenters perceive, measure, and evaluate quality within the different long-term care settings. A listing of the meetings and the presenters can be found in Appendix A. The committee commissioned five background papers in order to obtain expert and detailed analysis of some of the key issues. “Issues in the Quality of Long-Term Care for Children,” by Ruth E.K. Stein, M.D. “The Characteristics of Long-Term Care Users,” by William D. Spector, Ph.D., John A. Fleishman, Ph.D., Liliana E. Pezzin, Ph.D., and Brenda Spillman, Ph.D. “Quality of Care Problems Persist in Nursing Homes Despite Improvements Since the Nursing Home Reform Act,” by Marie F. Johnson, M.D., and Andrew M. Kramer, M.D. “Work Force Issues and Quality of Long-Term Care,” by Penny Hollander Feldman, Ph.D. “Long-Term Care Financing and Quality of Care,” by Joshua M. Wiener, Ph.D., and David G. Stevenson. The committee appreciates and values their contributions.

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Improving the Quality of Long-Term Care BASIC CONCEPTS AND DEFINITIONS Long-Term Care For purposes of this report, long-term care is broadly defined as an array of health care, personal care, and social services generally provided over a sustained period of time to persons with chronic conditions and with functional limitations. Functional limitations are typically assessed as limitations in activities of daily living (ADLs) or instrumental activities of daily living (IADLs). ADLs reflect an individual's capacity for self-care. They usually refer to the five basic functions: bathing, dressing, eating, transferring in and out of bed or chair, and using the toilet. Mobility assistance is often included. IADLs involve more complex tasks that enable an individual to live independently in the community. These include doing light housework, managing money, shopping for groceries or clothes, using the telephone, preparing meals, taking medications, and communicating verbally or in writing. For children, especially very young ones, ADLs and IADLs become very difficult to measure. Given the basic dependence of young children on adults around them, developmental milestones may form more reliable comparisons. Health care includes medical, nursing, and other care provided by nurses, nursing aides, therapists, physicians, and other health workers serving people who need long-term care. Personal care services include assisting people of all ages with chronic conditions and limitations with ADLs. These services are “provided by an individual qualified to provide such services” (42 C.F.R. 440.167). (Skilled services that may be performed only by a licensed health professional are not considered personal care services.) Social services are diverse and include linking people to a range of community resources and services, assisting in the resolution of family or financial problems, and arranging social and educational activities. A sustained period of time has no official definition but is often considered to be three months or more. Formal long-term care refers to a range of health care and supportive services provided by individuals and organizations paid to provide such services. Much long-term care, however, is informal—provided on an unpaid basis by family members and friends. Most discussions of quality assessment and improvement focus on formal care, but support for and assessments of informal services are also relevant to a comprehensive understanding of the experiences of those receiving long-term care. Long-term care is generally distinguished from acute and primary care both by its duration and by its greater emphasis on personal care and social services, but the boundaries can blur, especially for people with

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Improving the Quality of Long-Term Care serious chronic illness. Moreover, people receiving long-term care also require a variety of preventive, primary, and acute care services, some of which (e.g., immunizations) may be delivered by long-term care providers. Long-term care goals and strategies may vary for different populations. For children, the definition and goals of long-term care have to take developmental status into account. Many of the services (e.g., assistance with dressing and financial matters) that might meet the definition of long-term care for adults would be provided as a matter of routine to developmentally normal children, especially younger children. Consumer-Centered Care Consumer-centered care, or patient-centered care, is health care that is closely congruent with and responsive to patients' wants, needs, and preferences (Gerteis et al., 1993). The term is used to refer to a shift from a more professional-driven health care system to one that recognizes and incorporates an individual patient's perspectives (Laine and Davidoff, 1996). Elements of consumer-centered care include individualized care planning and delivery of services; participation of a consumer or a consumer's family and other intimate caregivers in care planning and delivery; consideration of consumer values, culture, traditions, experiences, and preferences in the definition and evaluation of the quality of care; and recognition and support of consumer self-care capabilities, including integration of formal services with informal supports. The notion of consumer-centered care is not a new one, but it has accelerated rapidly in recent years and there is now tangible evidence, at least in the acute and primary care encounters, of consumer-centered care in many facets of health care delivery and financing, medical law, and quality assessment (Laine and Davidoff, 1996). Historically much health care, particularly institutional care, has operated in a health care environment managed by professionals whose training and medical ethics standards have traditionally emphasized expertise, responsibility, and benevolence more than patient autonomy and informed decision making (see Cassell, 1991; Gerteis et al., 1993; Goodwin, 1999). Over the last three decades, however, there has been a shift in health care decision-making approaches from the more paternalistic patient-physician relationships to deliberative models that engage the patient in active discourse in order to incorporate the patient's perspective when determining the optimal course of action (Slack, 1977; Kassirer, 1983; Quill, 1983; Emanuel and Emanuel, 1992; Laine and Davidoff, 1996). Legislative developments lend support to various aspects of consumer-centered care, specifically, greater recognition of consumer preferences in health care decision making and expansion of health care delivery options.

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Improving the Quality of Long-Term Care The Americans with Disabilities Act of 1990 (ADA) has set the standard for various legal and policy efforts. The Patient Self-Determination Act (PSDA) of 1990 requires every health care facility that participates in Medicare and Medicaid to inform adult patients about advance directives (P.L. 101-508). Although the actual impact of the PSDA is debatable, the intent is to empower patients to take part in health care decisions that affect the duration and condition of their lives (Emanuel et al., 1993; Laine and Davidoff, 1996). The term consumer-directed services goes beyond the concept of consumer-centered care to address the capacity of individuals to “assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services they receive” (National Institute on Consumer-Directed Long-Term Services, 1996, p. 1). To date, consumer-directed services for long-term care are most often considered within the context of home and community-based personal attendant services (Litvak et al., 1987; Doty et al., 1996; Scala and Mayberry, 1997). Much of the foundation for the development of consumer-directed services for long-term care can be traced to the Housebound and Aid and Attendance Allowance Program operated by the Veterans Administration (Cameron, 1993), and to the models of personal assistance services for persons with physical disabilities developed through the independent living movement (DeJong et al., 1992). Consumer-directed models of long-term care services for these populations include: (1) consumer selection, training, and supervision of caregivers and providers of service; (2) individualized supports essential to maintaining the consumer's health and quality of life in the community (e.g., personal assistance, assistive devices, environmental modifications, consumer education, service coordination, and family and social supports); (3) consumer involvement in the development and approval of support plans and the authorization of payment; and (4) consumer monitoring of the quality of care (DeJong et al., 1992; Fenton et al., 1997; Scala and Mayberry, 1997). Such models have been applicable mostly to people with physical and developmental disabilities using personal attendant services, although some approaches to consumer-directed services are beginning to emerge for the elderly population with chronic illness and functional limitations. Quality of Care Assessments of the quality of the health, personal, and social services that make up long-term care draw not only on concepts used in assessing the quality of health care but also on concepts of quality of life. Broadly defined, quality of life reflects “subjective or objective judgment concerning all aspects of an individual 's existence, including health, economic,

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Improving the Quality of Long-Term Care political, cultural, environmental, aesthetic, and spiritual aspects ” (Gold et al., 1996, p. 405). Health-related quality of life refers to those aspects of a person's overall well-being that are affected by health status or health care (Gold et al., 1996). The quality of health care has been defined as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge” (IOM, 1990, p. 21). The reference to desired health outcomes and quality of life emphasizes health and well-being as viewed and valued by people for themselves, not just as defined by health professionals or others. The importance that people using long-term care assign to various dimensions of health and well-being will vary depending on their circumstances (e.g., nature of health problems, age, family situation), expectations, and values. In some cases, efforts to improve one desired outcome (e.g., independence) may compromise another (e.g., avoidance of injury to self or others), and different people may value and balance these and other outcomes differently. In some cases, people may reject health care that would improve certain health outcomes at the expense of their quality of life. A commonly cited example is a person who rejects difficult therapies that might extend life for a few days or weeks and opts, instead, for palliative care that emphasizes physical and emotional comfort. Another consideration in assessing the quality of long-term care is the nature of desired and expected outcomes and the appropriate care to achieve those outcomes, all of which may vary for different populations. Unlike acute care, which is usually expected to restore people to good health, the desired outcome of long-term care (and chronic care generally) will often be preventing or slowing further declines in health status and functional capacity for people with disabling conditions. After initial periods of more intensive service including habilitative or rehabilitative service,3 many people adapt to their chronic conditions and disabilities and can sustain themselves for long periods with limited medical, personal, or social assistance. In particular, the long-term needs of children and adolescents may change drastically over several years. They may require long-term care services for lengthy periods, but the goal —often but not always achieved—is eventual independence from long-term care services and integration into the community as participating members of society. 3   Rehabilitative services aim to restore function that once existed, whereas habilitative services are aimed at initially developing a function that had not existed (e.g., helping children with congenital disabilities achieve more than they would without special assistance).

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Improving the Quality of Long-Term Care A consumer-centered approach to long-term care would necessitate a fundamental shift in the approach to determining and evaluating the quality of that care. The locus for defining quality of care and desired outcomes would need to be extended from the care provider to the alliance of provider and consumer. The definition of quality of care would need to be expanded beyond health and safety outcomes to include outcomes such as quality of life and autonomy. The measurement of consumer-centered care would be incorporated as a complement to those of patient health and safety, and effectiveness and efficiency of care. Outcomes and other indicators of the quality of care likewise would need to be extended from traditional clinical health assessment to include consumer-reported experiences of care, processes of care, satisfaction with care, as well as consumer self-report of the achievement of health outcomes and quality of life goals specified in a care plan. Finally, the collection of data to assess the quality of care would need to be accomplished by providers and consumers jointly seeking to identify processes of care and environments that achieve desired outcomes, to target areas for care improvement, and to assign responsibilities for implementing these improvements. These approaches to evaluation of consumer-centered quality of care, although understood at a conceptual level, are just beginning to be translated into a valid and reliable technology for quality of care assessment and improvement (see, for example, the Picker Institute, 1995). General Principles The committee was guided in its deliberations by several working principles including a mix of value statements and empirically based assumptions. These principles are not absolutes, and in some situations they may conflict with one another or with other important principles that guide health care or public policy. For example, accommodating the desire to live at home or in other settings that offer more independence than a nursing home may, because of the higher risk of injury, conflict with society's commitment to establishing basic safety standards for certain products and services. Despite the potential for such conflicts, the committee believes that these principles should help shape efforts to protect and improve the quality of long-term care. Long-term care should be consumer-centered rather than solely provider-centered. Consumer-centered care focuses on the needs, circumstances, and preferences of people using care and their families, and involves them, to the extent possible, in planning, delivering, and evaluating long-term care. Provider needs and circumstances (e.g., the need for cost efficiency and to react to short staffing) are important

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Improving the Quality of Long-Term Care but secondary. Although the principle may seem clear and simple, caregivers, providers, policy makers, and others can find it difficult to remain consumer-centered when confronted with the practical, day-to-day realities of organizing, delivering, financing, and regulating care across the array of long-term care settings and services. Moreover, given resource constraints and the frail condition of many of those using long-term care services, especially residents in nursing homes, often it may be impractical to ask people about how they experience and value the care they receive. Inadequate staffing in terms of numbers as well as education and training, combined with high turnover rates, also tends to lead to care that is provider-centered rather than consumer-centered. A system of consumer-centered long-term care should be structured to serve people with diverse characteristics and preferences. The system should provide for people of all ages, race and ethnicity, income, family support, and all kinds and levels of physical, mental, and cognitive illnesses and functional limitations. Reliable and current information about the options available and the quality of care provided should be easily accessible to allow people to make informed choices about long-term care. The growth and variability of options in long-term care service, the diversity of state programs to license or monitor them, and even the inconsistent language used in talking about long-term care needs and services make the development of coherent information and its communication particularly important. Access to appropriate long-term care services is both a quality of care and a quality of life issue. Historically, long-term care has been nearly synonymous with institutional long-term care. Individuals with severe disabling conditions may need an array of services ranging from institutional services, residential care, and home care, to a variety of home and community-based personal assistance services. The ability to choose the type of services and the setting of services that are most appropriate to the needs and wants of the individual is an important consideration. Access to such services can make an important difference in the quality of life and quality of care for individuals with chronic conditions and functional limitations who want to remain at home or in the community. Measures of the quality of long-term care should incorporate its many dimensions, especially quality of life. Such measures should reflect the broad range of social, psychological, physical, and medical needs of consumers of long-term care service. Quality of life was emphasized in the 1987 nursing home reforms, and assessment of quality of life is especially relevant for evaluating care for people with chronic dis-

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Improving the Quality of Long-Term Care abling conditions that substantially limit their control over their life and environment. Providers should be held accountable for their performance in providing high-quality long-term care, including the outcomes of care that they could affect. A system of accountability requires (1) identification of standards of acceptable performance, (2) measurement tools and information systems that allow informed measurements and assessments of performance, and (3) dissemination of these assessments to the parties to whom accountability is owed. A motivated, capable, and sufficient work force is critical to quality long-term care. Although the physical environment and other factors are important, the final common pathway for providing high-quality long-term care is the individual caregiver. If staff are poorly educated, trained or supervised, mismatched in skills to the needs of those requiring care, demoralized by their working conditions, or overwhelmed by their workload, it is virtually impossible to achieve acceptable quality care, especially care that is consumer-centered. Improving the quality of long-term care requires sustained government commitment to develop and implement fair, effective regulatory and financing policies. Policy makers and payers have a fiduciary responsibility to see that public funds for long-term care are used well. They also have a broader responsibility to protect public health and safety. In setting forth the basic standards for providers of care, federal and state policies provide a foundation and safeguard for the other principles enumerated here. Although consumer choice and market forces have roles to play in the evolution of more consumer-centered long-term care, neither can operate effectively without a basic regulatory framework that covers contracting, information provision, complaint handling, and similar matters. Improving quality of care must be an ongoing objective. Building the capacity for high-quality long-term care depends on improved knowledge of the practices and policies that contribute to the well-being of people using that care. Improvement in quality of care should be informed by scientific evidence linking alternative modes of care to desired outcomes and be guided by structured procedures to evaluate processes and outcomes of care, to identify areas of improvement, and to design and test actions that improve care. Although not stated as a formal principle, the committee also urges consideration of the value of two principles for guiding and improving individual behavior that are grounded in centuries' worth of social evolution. One rests on the ideal of high personal ethics. This ideal applies to

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Improving the Quality of Long-Term Care informal and formal caregivers alike, as well as to managers, policy makers, and all those making decisions about long-term care for others. Building on and going beyond this ideal is the principle of professionalism. External regulations, internal management structures, and impersonal market forces cannot compensate for caregivers, managers, and others involved in long-term care who lack an engaged conscience informed by personal and professional standards and values. SCOPE AND LIMITATIONS The scope of the study is very broad and complex, covering a wide range of settings for providing long-term care. Although the committee recognizes their growing importance, for reasons of lack of available data as well as resource and time constraints, the committee was unable to address every possible long-term care service and setting, population group, and issue that might be considered relevant or related to its charge. For instance, a fuller consideration of the quality of long-term care for children, adolescents, and younger adults with developmental disabilities; personal attendant services for people with severe cognitive impairment, severe and persistent mental illness, AIDS, and other conditions; and some settings such as intermediate care facilities for the mentally retarded, long-term psychiatric hospitals, and others can and should be the subjects of separate studies. The committee discussed the issues surrounding the movement of people among long-term care settings and providers, but time and resource constraints, as well as lack of sufficient information, prevented the committee from fully addressing this issue. This report addresses the current status of long-term care quality and proposes ways to build a better policy environment in long-term care. Three criteria guided the committee in the content of the report and its recommendations. First, the subjects examined should be within the purview of the committee, and the topics should be relevant to and within the scope of the study. Second, the evidence must be sufficient to support and justify its findings, and recommendations must be adequately supported by evidence and analysis. Third, a recommendation should be attainable at reasonable cost. The committee deliberated long and hard on the various issues, findings and conclusions. Not all agreed on all recommendations, but most agreed with the overall report. Some disagreed with the wording of recommendation 3.1 and some expressed dissatisfaction with the report's discussion of regulatory issues. Their separate dissenting opinions are included in Appendix B.

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Improving the Quality of Long-Term Care Organization of the Report The various services and settings for the provision of long-term care represent related but separate sectors of care often facing different issues with regard to topics studied by the committee. As stated earlier, the nature and extent of systematic empirical information also vary by providers and settings. In fact, a major problem in developing a balanced examination of the issues across settings is the paucity of reliable and systematic data and research for most of the care settings with the exception of nursing homes. Therefore, for the most part they are discussed separately within each chapter. Chapter 2 summarizes the profile of long-term care in terms of who uses it, who provides it, and how it is currently financed. Chapter 3 provides a framework for assessing the quality of long-term care and summarizes what is known about the current state of quality in different settings of long-term care. Chapter 4 discusses the current information systems for monitoring performance that could be used to assess, monitor, and improve quality of care. Chapter 5, Chapter 6, Chapter 7, Chapter 8through Chapter 9 examine a range of issues and needed changes leading toward building a better policy environment in long-term care. These efforts include improvements in defining and enforcing basic standards of care, maintaining an adequate and qualified work force, building organizational capacity to improve care, and finally, designing reimbursement methods that encourage both quality and efficiency in care. Although the committee has made every effort to obtain data and objective evidence based on research, some of its conclusions are necessarily derived from professional judgment based on the expertise and experience of committee members and on testimony and information provided by constituencies. In such cases, the committee has so indicated. The report considers similarities and differences in the circumstances and concerns of various users of long-term care, including children, but it devotes more attention to older adults, both because they are the major users of long-term care, with prospects for further growth in their numbers, and because the long-term care literature and policy agendas also focus on aged adults and adults with disabilities. The report reviews nursing homes in more depth than other service settings because of long-standing problems of quality of care in these settings and because the literature on the quality of care in other settings is very limited.