Summary

Millions of Americans—both old and young—currently receive some type of long-term care (LTC) in their own homes or in residential care settings other than nursing facilities. For many—if not the majority—this embodies their emphatic choice to stay in their own homes and communities for as long as possible. Equally compelling to lawmakers and the general public eager to cut skyrocketing health care costs is the potential for home and community-based care to be a cost-effective alternative to institutional LTC.

Yet concerns abound about the quality of service provided in all the settings that make up the LTC system. The quality of care in nursing facilities has long been questioned, resulting in numerous studies and regulatory efforts. This report, however, focuses on the quality of care provided within individuals' homes— however they define home—whether it is an apartment in a residential care facility, a room in their adult child's home, or the single family dwelling they have lived in for years. This report also briefly examines how the quality of that care is currently assured and improved, and presents a study plan for a much more thorough examination of these issues to be done by the Institute of Medicine (IOM).

ORIGINS OF THIS PLANNING ACTIVITY

The 1992 reauthorization of the Older Americans Act (OAA) directs the Secretary of the U.S. Department of Health and Human Services to arrange for the IOM to conduct two studies on the quality of care for older and disabled individuals. Despite the legislative mandate to conduct the studies, no specific funding has ever been appropriated for them. In the spring of 1995, the Administration on Aging decided to provide funding for the IOM to develop



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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings Summary Millions of Americans—both old and young—currently receive some type of long-term care (LTC) in their own homes or in residential care settings other than nursing facilities. For many—if not the majority—this embodies their emphatic choice to stay in their own homes and communities for as long as possible. Equally compelling to lawmakers and the general public eager to cut skyrocketing health care costs is the potential for home and community-based care to be a cost-effective alternative to institutional LTC. Yet concerns abound about the quality of service provided in all the settings that make up the LTC system. The quality of care in nursing facilities has long been questioned, resulting in numerous studies and regulatory efforts. This report, however, focuses on the quality of care provided within individuals' homes— however they define home—whether it is an apartment in a residential care facility, a room in their adult child's home, or the single family dwelling they have lived in for years. This report also briefly examines how the quality of that care is currently assured and improved, and presents a study plan for a much more thorough examination of these issues to be done by the Institute of Medicine (IOM). ORIGINS OF THIS PLANNING ACTIVITY The 1992 reauthorization of the Older Americans Act (OAA) directs the Secretary of the U.S. Department of Health and Human Services to arrange for the IOM to conduct two studies on the quality of care for older and disabled individuals. Despite the legislative mandate to conduct the studies, no specific funding has ever been appropriated for them. In the spring of 1995, the Administration on Aging decided to provide funding for the IOM to develop

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings recommendations regarding the conceptual framework and provisional design for these two studies or for a single, comprehensive study. A planning committee was convened in July to explore the topic. This report represents the culmination of the committee's work, which was informed through a number of processes. These involved a thorough review of the relevant literature; presentations given at an invitational workshop held by the committee that included input from consumers, leading researchers, and state officials; and the actual deliberations of the committee and a discussion of members ' expert opinions. OVERVIEW OF HOME AND COMMUNITY-BASED LONG-TERM CARE As detailed in Chapter 2, more than 10 million Americans of all ages currently need some type of LTC to remain in their own homes or in other community-based settings (compared with only 2 million persons in institutions such as nursing facilities or chronic care hospitals). Contrary to most stereotypes, only a little more than half of the total population of home and community-based LTC users are elderly individuals (ages 65 and older). Most of the rest (two-fifths) are working-age adults; children under age 18 represent a very small segment of the total population of these LTC users. Estimates of the number of residential care settings vary a great deal—from 18,000 to more than 65,000 settings serving 1 million residents, depending on the way in which such settings are defined. Several recent studies have found serious levels of disability among residents and suggest that the population is aging and experiencing profound levels of chronic disease, functional impairment, cognitive impairment, and chronic mental illness. Again, however, this varies according to the definition being used. Each year, billions of dollars are paid for LTC through a variety of funding sources. Along with substantial contributions from the recipients themselves and their families, more than 100 federal programs provide support of some sort for LTC. Several major government programs finance the majority of such care, however, including Medicare, Medicaid, OAA programs, Social Services Block Grants, the Supplemental Security Income and Social Security Disability Insurance programs, and a variety of state programs that are funded through individual states' general revenues. In recent years, several changes have been proposed for financing LTC. As this report is being written, Congress is considering major legislation to reform both the Medicaid and the Medicare programs. Changes to the Medicaid program include block granting the program to the states, allowing eligibility to be defined and determined by the individual states, and increasing the use of managed care. Medicare proposals also call for increasing the use of managed

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings care, as well as introducing greater cost-sharing requirements from high-income beneficiaries, and increasing the premiums and copayments paid by all beneficiaries. Several trends in recent years have changed the nature of home and community-based care and will continue to affect its development over the next several decades. Some reflect positive changes that will ultimately benefit everyone; others are much more troubling. Among the more important trends are shifts in attitudes about the provision of care; a growing population; changes in the supply and role of informal caregivers; heightened concerns about cost, access, and availability of services; and an increase in service delivery experimentation. Specific quality problems have also been noted regarding paraprofessional workers, as well as problems at the systems level, such as fraud and abuse, ethical and liability issues, and overregulation. However, very few data exist regarding the extent or seriousness of quality problems in home and community-based LTC, although allegations and anecdotes abound. CURRENT QUALITY ASSURANCE AND IMPROVEMENT STRATEGIES Chapter 3 comments on the structure, process, and outcome variables important to fully conceptualize quality of care; it also briefly discusses different types of quality assurance or improvement Programs that can be mounted externally by regulatory agencies or by private voluntary entities, as well as those that can be implemented by provider organizations themselves. Recently, the emphasis of regulation at all levels of government and industry has shifted to improving performance based on outcomes measurement. Although structure and process measures are still considered valuable, greater importance has been placed on ensuring that a regulated entity achieves a desired goal, instead of merely complying with basic capacity standards and procedural steps that presumably lead to the achievement of that goal. In the public sector, external quality assurance and improvement strategies might be carried out at the federal, state, and local levels through regulation and by private, voluntary accreditation. Other external strategies may involve structuring or financing care in ways believed to promote the quality of care; such steps might include the use of case management or managed care procedures of many sorts. Finally, an array of consumer advocacy or complaint resolution programs exist to offer some protections against poor care, fraud, and abuse. Internal quality assurance and improvement programs are developed and used by provider organizations of their own accord as a way to improve the systems and processes that help them realize the goal of providing excellent care that continues to improve over time. Embodied in many of these internal programs

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings are the principles of “total quality management” and “continuous quality improvement.” These programs might include development of internal procedures and information systems, ongoing data gathering and analysis, staffing policies, case management, and consumer feedback mechanisms. The original legislative charge for the larger studies of the quality of board and care facilities and home care services called for an examination of whether existing quality, health, and safety requirements and their enforcement are (1) appropriate, (2) effective, and (3) adequate. This committee could not and did not seek to answer those questions. Rather, it has identified several problem areas in regard to the overall appropriateness, effectiveness, and adequacy of existing quality assurance and improvement strategies as they are directed at services rendered in home and community settings. In identifying these issues, the committee noted, with concern, how little information is presently available that would permit a quantitative examination of these topics. To answer the question of whether the “right” or appropriate strategies for measuring and managing the quality of resident or patient services are in place, one ought first to have a clear view of what quality is. Determining this can be difficult because consumers, caregivers, providers, and purchasers all have differing views of what constitutes quality. Differences between consumers or residents (on the one hand) and providers or purchasers (on the other) can be difficult to resolve, because of differences in preferences, in the kind of information brought to bear on the question, or in the criteria used to evaluate quality. Apart from how judgments about quality may differ, depending on who is doing the evaluation, is the issue of differences between intended and achieved effects. Some strategies to ensure quality may have quite the opposite effect in practice. Some strategies to protect the health and safety of residents may, even with all good intent, go too far and deny some individuals certain fundamental rights. Finally, assessing and improving quality involve costs. Decisions and trade-offs have and will continue to be made about how much we as a society are willing to invest to achieve and sustain high-quality services, especially in these newer settings for services. A perennial debate, worth revisiting particularly in the home care context, is how best to invest resources in quality assurance activities in an arena widely believed to have limited resources for actual service provision. The committee found both encouraging and discouraging indications about whether existing quality assurance and improvement strategies are effective. For example, a recent study of board and care facilities found that in states rated as having extensive regulation, several quality indicators were higher than in states rated as being less regulated. Conversely, little evidence exists to show that the use of such common structural measures as professional credentials and minimum

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings training has an impact on outcomes measures in home and community-based care. A more significant issue, however, is that typical external quality assurance efforts are not established or conducted with the aim of steadily improving the average performance of providers over time —that is, of “shifting the curve upward.” In this regard, traditional approaches may or may not be effective in weeding out poor performance and ensuring that practitioners or others meet some minimal standards, but they are rarely effective in promoting sustained efforts at continual improvement within organizations or agencies. The question of whether quality assurance and improvement programs are adequate is difficult to answer because knowledge of the extent or seriousness of quality problems is extremely limited. What seems clear to this committee is that achieving good quality home and community-based services will require a variety of both external and internal programs. Taken together, well-founded regulatory requirements, sensible outside monitoring of performance, and solid internal programs that capitalize on such steps as periodic reassessment of the consumer's individualized care plan and appropriate use of data can all contribute to a much improved probability of consumers and residents receiving the highest level of quality possible. The challenge will be to develop means by which the appropriateness, effectiveness, and adequacy of these efforts can be defined and evaluated. FUTURE STUDY PLAN As noted earlier, the original OAA legislation called for two studies: one regarding the quality of board and care facilities, and the other regarding the quality of home care services. For both conceptual and practical reasons, the IOM committee concluded that a single study would suffice. It proposes therefore that one study look at quality assurance in both home care and residential care settings. The committee also decided to keep the current broad focus on all users of home and community-based LTC, rather than focusing only on either the elderly or the disabled population. The committee identified six major areas to be examined in the study: What key features define home care services and the consumers receiving them? What key features define residential care settings and the residents living there? To what extent do home care consumers and residents in residential care settings differ from or resemble each other? What are the type, frequency, and severity of quality problems in home care and in residential care? What factors enhance or impede the provision of quality care in home and residential care settings?

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings How can the appropriateness, effectiveness, and adequacy of current and proposed quality assessment and improvement strategies for home care services and residential care services be optimized? What role should consumers and their informal caregivers play in defining and evaluating quality? Are national minimum standards or model standards needed to ensure the quality of home and residential care? If so, what should they address or emphasize and how can compliance with these standards be encouraged and enforced? The committee laid out a study design to examine these key questions in a process that would be conducted over an 18-month period, guided by a study committee of 16 to 18 members. Studies at the IOM typically include the collection of existing data; analysis of that information; and the development of conclusions and recommendations that culminate in a published report. In addition to its final report, the planning committee concluded that the full study committee should prepare an interim report that defines the taxonomy of home and community-based services under study. Both reports would be reviewed by a separate and independent group of experts according to the procedures of the National Research Council and disseminated widely through a variety of means such as press conferences, briefings, and derivative publications. The IOM is well qualified to lead such a project. The potentially contentious nature and broad scope of the study point to the utility of the IOM model, which employs a study committee composed of experts from a variety of disciplines who hold a range of different perspectives. Recommendations are formulated after a rigorous process of seeking input from many sources and developing consensus among the committee 's different stakeholders. The IOM's national reputation as an objective, scientific, and policy-relevant organization adds the considerable credibility necessary to influence policies at all levels of government. The product of this particular study is also intended to be of immediate, practical value to individual providers and consumers as well. The IOM was asked to examine these important issues several years ago, at a time when the sweeping changes confronting the world of health care and LTC had just begun to gather force. The concerns that led Congress to seek guidance on how best to address those changes remain just as vital today. So, too, do the opportunities to create meaningful differences in the way care is provided to countless older and disabled individuals and their families.