9

Closing Remarks

During the three years this committee met, it reviewed much of the available data and research, and learned a lot about the various issues surrounding long-term care. This chapter highlights just some of the conclusions the committee reached. As is clear from the discussions in the preceding chapters, it is easier to propose a comprehensive examination of long-term care than to identify, collect, and analyze relevant data sufficient to support comparable descriptions and assessments across the diverse settings, services, and populations.

Throughout the study the committee's work was impeded by the lack of common definitions across and within states to describe many of the providers of long-term care; and a lack of comprehensive, timely, and reliable information on the quality of care received from the various long-term care sources. Although steps are being taken in that direction, no core set of quality measures are available with common elements and data collection protocols that apply across long-term care settings and services—to nursing homes, home care, and supportive services, the great variety of congregate residences, and other settings or services. The result is that very little is known about the quality of care and outcomes in settings other than nursing homes. What information is available often is not comparable, and does not take into account how people perceive their experience of long-term care.

The committee believes that long-term care should be consumer-centered focusing on the needs, circumstances, and preferences of people using care and involving them, to the extent possible, in planning, deliv-



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Improving the Quality of Long-Term Care 9 Closing Remarks During the three years this committee met, it reviewed much of the available data and research, and learned a lot about the various issues surrounding long-term care. This chapter highlights just some of the conclusions the committee reached. As is clear from the discussions in the preceding chapters, it is easier to propose a comprehensive examination of long-term care than to identify, collect, and analyze relevant data sufficient to support comparable descriptions and assessments across the diverse settings, services, and populations. Throughout the study the committee's work was impeded by the lack of common definitions across and within states to describe many of the providers of long-term care; and a lack of comprehensive, timely, and reliable information on the quality of care received from the various long-term care sources. Although steps are being taken in that direction, no core set of quality measures are available with common elements and data collection protocols that apply across long-term care settings and services—to nursing homes, home care, and supportive services, the great variety of congregate residences, and other settings or services. The result is that very little is known about the quality of care and outcomes in settings other than nursing homes. What information is available often is not comparable, and does not take into account how people perceive their experience of long-term care. The committee believes that long-term care should be consumer-centered focusing on the needs, circumstances, and preferences of people using care and involving them, to the extent possible, in planning, deliv-

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Improving the Quality of Long-Term Care ering, and evaluating care. The notion of consumer-centered care is not new, but 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. The committee finds guarded optimism in the increased acceptance of consumer-centered service as a core principle for assessing and improving long-term care. However, moving toward meaningful consumer-centered services in long-term care settings would require a mix of changes in consumer and provider attitudes, business practices, public policies, care processes, and management structures. Achieving such changes requires research, and time and effort to integrate the elements of consumer-centered care into the training and attitude of the full range of paid caregivers. A prerequisite to such care is an adequate supply of caregivers who are appropriately trained and sensitive to provide such care. Broadly speaking, consumers and their families should have access to information, training, and resources necessary for them to participate in self-care and in the direction of their care providers at the level they choose. A recent General Accounting Office report (GAO, 1999a) on assisted living singled out inadequate contracts as a major problem in that sector. People receiving formal long-term care in any setting should have a care contract or admission agreement that is clear, understandable, and enforceable to ensure that long-term care users (or their representatives) have access to accurate, complete, and understandable information about the services that individual caregivers and provider organizations offer. For children receiving long-term care, family members have central roles in a child's care team including approval of care plans for the child and participation in updating the objectives and services set forth in the care plan, but are not always aware of their role. When care providers change their policies or practices, they should present information or, if appropriate, create training programs for consumers and directly related parties. Public information and reporting to the community and to consumers should be required of providers annually, and should include financial and quality information, results of consumer surveys, and findings of regulatory and accrediting bodies. Federal and state laws should include specific provisions regarding consumer protections for nursing homes, residential care, and home care, and should provide specific mechanisms in addition to existing regulatory bodies to oversee the rights of consumers. Supportive public policies are essential for the expansion of consumer-centered care because those using long-term care often rely heavily on public programs to help pay for care over long periods of time. Ideally, the policies governing such programs should permit various levels of participant involvement and direction, offer consumers access to a flexible array of benefits, and make available the assistance and resources

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Improving the Quality of Long-Term Care people need to successfully determine and direct their services. No one approach is sufficient for the diverse groups using long-term care. The range of benefits, risks, and resources associated with different approaches to consumer-directed personal care services for people with disabilities is only beginning to be identified. Before these principles could be translated into workable and cost effective programs, developmental and feasibility research and evaluation is needed in several areas. Regardless of the approach to long-term care adopted, the committee emphasizes the importance of reliable and timely data on which to base decisions. The committee's work on several of the issues it was asked to examine was impeded by the lack of availability of timely, reliable, and valid data across states and settings. Very little is known about the quality of care and outcomes in settings other than nursing homes. Most information still focuses on nursing homes; consequently, this report devotes disproportionate attention to them. This emphasis reflects, to a large extent, the concentration of public expenditures in the nursing home setting and the monitoring of that spending to ensure accountability. An increasing number of elderly people are living in settings that are neither homes nor nursing homes. Some with disabilities who previously would have resided in nursing homes are seeking alternative settings. Lack of data, however, makes it difficult to assess the nature and extent of this shift. Alternatives to nursing home care are found in a variety of residential settings, but they are not systematically and frequently enumerated with uniform and meaningful definitions. The Bureau of the Census, for instance, classifies people as residing either in households or in group quarters, which include both institutions, such as nursing homes, and other non-institutional group quarters, such as rooming and boarding houses, group foster care, and board and care homes. Furthermore, Census classifies both small board and care arrangements and apartments in assisted living facilities as households, not institutions. Assisted living facilities are growing rapidly. In the absence of clear and uniform definitions of these and other residential arrangements we have no way of measuring the growth of these settings nationally or how many and what type of clients they serve. Despite periodic reports about poor conditions in some residential care settings and fraud in sectors of the home health care industry, comprehensive information about quality of care is scarce for the home and community-based services which are preferred by many users of long-term care and their families and advocates. Informed choices about long-term care alternatives depend on better information. The evidence reviewed by the committee indicates that the quality of care in nursing homes may have improved in some areas during the past decade, to a large extent due to provider response to the 1987 Nursing

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Improving the Quality of Long-Term Care Home Reform Act and the forces that gave rise to this legislation. Improvements are best documented for the use of physical and chemical restraints in nursing homes. The evidence also suggests that serious quality problems appear to continue to affect residents of this country 's nursing homes, with persistently poor providers of care remaining in operation. Taken together, government databases and investigative reports, research studies, legislative hearings, and similar sources point in this direction. Serious deficiencies remain in the implementation of government programs to assess and enforce basic standards of quality in long-term care. The information base available for nursing homes suggests a number of problems including variation in state survey and enforcement processes, restricted federal funding for state programs, and inadequate attention to home and community-based services. Particularly worrisome is the continued participation in Medicare and Medicaid of persistently poor-performing providers, especially those who have been repeatedly dropped from the program and reinstated. A number of federal initiatives to improve the regulation of nursing homes have been announced, but it is important for Congress and advocacy groups to continue the monitoring of their implementation and consequences. Their effectiveness cannot be assumed. The committee acknowledges that issues surrounding the quality of long-term care are closely intertwined with the broader issues of access, work force, and costs. Over the course of this study, the committee became increasingly persuaded that the amounts and ways we pay for long-term care are probably inadequate to support a work force sufficient in numbers, skills, stability, and commitment to provide adequate clinical and personal services for the increasingly frail or complex populations using long-term care. Adequate funding is necessary but not sufficient for goodquality care. For some policy makers and consumer advocates, the combination of poor care and high shareholder profits and corporate executive pay for some long-term care providers undermines arguments for higher provider payments. Nonetheless, the information available to the committee on staffing levels and skills, management, training, wage levels, working conditions, and turnover suggests that resource constraints are a serious problem. This situation has important implications because the long-term care work force is the essential pathway to many improvements in processes of care based on better understanding of care processes and outcomes, internal quality improvement strategies, and more effective regulation. Efforts to identify effective care processes often point to technically simple but time-consuming interventions that, especially when combined with increasing care measurement and analysis requirements, imply a need for additional resources. The committee, in closing, hopes that its findings and conclusions will provide some insights for the current discussions on policies for meet-

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Improving the Quality of Long-Term Care ing the care needs of long-term care users. Hopefully it will lead to the needed research and data collection for obtaining a comprehensive and reliable description of the various long-term care arrangements throughout the country, their size, services provided and staffing levels and training, the characteristics of those receiving care, and the staffing and quality of care provided in the different settings and services. Such information is essential for policy development and evaluation of long term care in the United States. The committee's assessment about the quality in long-term care is mixed. Important steps are being taken to develop long-term care services that are consumer-centered, and to provide alternatives that respond not only to people's differences but also to their usual preferences for options that provide more autonomy and privacy, and fewer disruptions in their lives. At the same time, consumer-centered care is not a simple concept that can be defined and interpreted in an identical fashion for all those using long-term care services under all circumstances. On the other hand, the committee found it disappointing that less has been achieved than was hoped in the 1980s when many of the quality initiatives discussed were launched. In particular grave neglect and problems in care persist in some nursing homes, and few—despite some examples to the contrary—have physical environments or policies that promote the quality of life most people desire regardless of their functional limitations or settings in which they receive care. Although the nursing home reforms were enacted in 1987, the Health Care Financing Administration issued the implementing regulations in late 1990, and the enforcement regulations became effective in 1995. Change is a process that takes time to produce definitive results. As discussed earlier, beyond nursing homes, little is known about the quality of long-term care or its outcomes. Although this report has discussed much that is disappointing or negative about long-term care in this country, it is not intended as a condemnation of those providing, managing, or regulating long-term care. Although some are guilty of inattention, neglect, incompetence, or even abuse, most are trying to do their work well and responsibly, often under difficult circumstances, and understaffed with low compensation.