4

Future Study Plan

The major purpose of the committee's planning activity involved the development of recommendations regarding the conceptual framework and provisional design for the two studies (or a single comprehensive study) mandated for the Institute of Medicine (IOM) in the 1992 reauthorization of the Older Americans Act (OAA). Even without that legislative imperative, the committee concluded that a thorough examination of ways to ensure the quality of home and community-based long-term-care (LTC) services is needed. This chapter poses critical study questions and describes some of the planned activities that would be carried out in such an examination.

STUDY CONCEPT AND KEY QUESTIONS

As noted, the original OAA legislation called for the IOM to conduct two studies: one regarding the quality of board and care (B&C) facilities, and the other regarding the quality of home care services. For both conceptual and practical reasons, this IOM committee concluded that a single study would suffice to look at quality and quality assurance issues 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's rationale for calling for such a combined study relates primarily to its desire to reduce the amount of duplication that already exists in these areas. In so doing, the committee does not want to discount the very real



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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings 4 Future Study Plan The major purpose of the committee's planning activity involved the development of recommendations regarding the conceptual framework and provisional design for the two studies (or a single comprehensive study) mandated for the Institute of Medicine (IOM) in the 1992 reauthorization of the Older Americans Act (OAA). Even without that legislative imperative, the committee concluded that a thorough examination of ways to ensure the quality of home and community-based long-term-care (LTC) services is needed. This chapter poses critical study questions and describes some of the planned activities that would be carried out in such an examination. STUDY CONCEPT AND KEY QUESTIONS As noted, the original OAA legislation called for the IOM to conduct two studies: one regarding the quality of board and care (B&C) facilities, and the other regarding the quality of home care services. For both conceptual and practical reasons, this IOM committee concluded that a single study would suffice to look at quality and quality assurance issues 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's rationale for calling for such a combined study relates primarily to its desire to reduce the amount of duplication that already exists in these areas. In so doing, the committee does not want to discount the very real

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings differences that exist in home and residential care and between older and younger individuals with disabilities; the differences are important and must be considered within their own contexts. Ultimately, however, the committee believes that the similarities among these services and populations are great enough to allow for a unified approach in addressing all the needs identified in the study. In fact, the committee believes such an approach will contribute significantly to efforts to eliminate much of the fragmentation and duplication that are the hallmarks of the current LTC system. The committee identified six major areas to be examined in the larger study, and these are explained below. The discussion also notes, in general terms, the types of information and data sources that might be used to address these questions. Key Study Questions 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? A clear understanding of the issues and individuals being studied is plainly necessary. What are the key demographic features of the population who need or desire such care? These could include age, sex, socioeconomic status, household structure, clinical and developmentally appropriate functional characteristics, including level of cognitive impairment and mental health status, and extent of isolation or community integration). What is the range of services needed or desired by that population? In what settings are those services provided? Who are the major providers (agencies and/or individuals) of such care? Who are the major purchasers of such care and how much does it cost? How do any of the above vary by state? What, if any, trends, can be identified? Although it is the sense of the committee that consumers of home care and residents of residential care settings face many of the same issues in terms of quality, committee members also felt that it was important to approach each population separately and then examine the overlap between the two. For example, under what conditions might those living in residential care settings actually receive services from home care providers? Under what conditions might a residential care setting better be considered a “home” in the sense of a private apartment, a “home” in the sense of a rooming house, or an institution? Are there differences between the two groups that are significant enough to warrant the use of different quality assurance and improvement approaches?

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings Data sources: As stated in Chapter 2, a great deal of information is available to answer these questions. They can be addressed in part by data obtained from sources cited in Chapter 2 and Chapter 3—that is, major federal data systems as well as a wide array of long-term research efforts. Such issues would be considered in the context of the conceptual framework for quality assessment and improvement laid out in Chapter 3. What are the type, frequency, and severity of quality problems in home care and in residential care? As mentioned in Chapter 2, this committee was able to find very few systematic data to answer these questions at this time. The main reason is that many home and community-based LTC programs are just now being developed and implemented. As a result, not much data has been generated. Conversely, even within well-established programs, processes have not been put into place to track quality problems. Nonetheless, a fuller explication of the adequacy of the data and information systems that inform us about quality problems is needed in any case, so efforts to answer this question will still be of long-term value. In answering the question, the future study committee would also need to consider several other issues. They primarily include (1) whether these quality problems vary by provider or client characteristics and (2) what kinds of quality problems are anticipated in the future. Data sources: These types of issues can be explored with existing research data; federal and state regulatory and survey statistics; private accreditation survey information; and information from public hearings. In general, however, much more is known about the types of problems that exist than about their frequency or severity. This latter gap in our knowledge base is of concern; without the tools to learn about the problems consumers are experiencing, it is difficult to design systems to protect them and prevent the worst of these problems from occurring. Thus, this is an area for which the full committee might be expected to offer ideas for independent primary data collection and research. What factors enhance or impede the provision of quality care in home and residential care settings? To develop quality assurance and improvement strategies it is important to have a good understanding of the forces that enhance and impede quality. It is equally important to know if a factor has no impact on quality. Many possible factors that could influence access to and quality of home care and residential care have been suggested, as implied by the discussion in Chapter 2 and Chapter 3. Among them are the financing and delivery of service,

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings including capitation and managed care mechanisms; processes concerning staff (credentialing, preemployment and continuing training, supervision, pay scales, etc.); regulation and accreditation (including minimum standards); reliance on unpaid family caregivers; formal residency contracts and admission and discharge criteria for residential care facilities; and provider concerns about safety. Each of these factors would be examined and a determination made about its effect on quality. Data sources: Although a fair amount of research has and continues to be done on some of these issues, not all of them can be addressed with existing empirical information. However, information drawn from other areas (e.g. research on the regulation of nursing facilities and hospitals), as well as conclusions and recommendations from other studies (including those by the IOM) can be brought to bear on these questions. This can be done, for example, through commissioned papers or special panel presentations at a committee meeting. Additionally, the decisions regarding how to answer this particular set of issues will involve judgments. An IOM committee is in a unique situation to develop such expert judgments given its emphasis on hearing the views of multiple parties and developing consensus. 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? To answer this question, the first step would be to describe the many different vehicles that are already in place or proposed to assess and assure the quality of home care and residential care and then to evaluate them in terms of their appropriateness, effectiveness, and adequacy. The committee would also be asked to develop a fuller conceptual structure for the ideas of appropriate, effective, and adequate. Information from the work done to describe quality assurance and improvement programs would be evaluated within this conceptual framework to explore the appropriateness, effectiveness, and adequacy of these programs. Other issues to be explored include whether quality assurance and improvement strategies should vary when the care is provided in a home setting versus a residential care setting. Should these strategies vary by consumer condition (physical and cognitive) or diagnosis? If so, how and to what extent? How should and can the individual preferences of consumers for such things as control and safety be taken into account when designing a quality assurance system? How much emphasis should be placed on the process of care compared to the outcome of care? An important consideration for all the recommendations developed in response to this question will be to weigh carefully the relative benefits and costs

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings of the strategies. Legal issues such as liability and delegation of duties by professionals such as nurses will also require special attention. Data sources: A considerable array of literature and program descriptions can be used in addressing these questions. Similarities and differences of such efforts around the country and for different populations would be examined. Much of this information has been developed for settings such as hospitals and large health care organizations, and the committee will need to consider carefully how to adapt that information to home and community-based settings. What role should consumers and their informal caregivers play in defining and evaluating quality? Clearly, how the consumer views quality plays a central role and should be given high priority when developing quality assurance and improvement strategies. Questions arise when trying to implement that goal, especially when consumers' views on quality differ from those of providers and other professionals. Figuring out ways to reconcile these differing views will constitute an important element of these strategies. A different issue arises when family members are also care providers. What outcomes, if any, should be sought with respect to the well-being of such family caregivers? Should informal caregivers be regulated or held accountable for the services they provide in ways similar to formal caregivers and agencies? What decisions should be made when these caregivers are providing poor care? Complicating these issues is the increasingly common situation in which family members are compensated financially for the care they give. How does this dynamic change the way in which these issues should be studied? How might one expect it to change the answers to the above questions? A final question is the extent to which informed consumers are able to influence the quality of home care and residential care. Data sources: For home and community-based care, very little is known about this issue. However, it is clear that increasing consumer involvement is a principle desired by payers, providers, and consumers and their families alike. The committee, drawing on its members' broad perspectives and expert opinions, will be able to develop consensus about and to enunciate the principles regarding how to achieve greater and more meaningful consumer involvement. In addition, depending on the eventual scope and size of the study, to get more input on this issue directly from consumers, the full committee might use one or more standard IOM techniques, such as focus groups, site visits, or video interviews with consumers and their representatives, in addition to appointing a consumer advocate and a resident to the committee itself.

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings 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? Few people would disagree that receiving high-quality services is important. Similarly, few would argue against the proposition that there are certain minimum standards that no service should fall below. What may be more debatable is whether, on a more basic level, there should be a single definition of what, for example, constitutes a &ss home. Have some standards or definitions already been developed that could serve as models? Can a basic consensus be developed regarding what the goals and objectives of quality improvement activities in home and residential settings should be? If minimum standards are necessary and a consensus can be developed about what they should be, what are the appropriate roles of federal, state, and local governments, as well as private accreditation organizations, in monitoring and enforcing compliance with them? What are the incentives for states and providers to adopt such standards? Data sources: As stated earlier, several states and private accreditation organizations have begun to develop their own quality assurance and improvement programs and standards for home and community-based LTC. The committee, informed by its technical liaison panel, would examine the experience and data of these groups. These types of questions would also need to be addressed in part through generalizations from what is known about other health care settings, providers, and quality improvement programs. The IOM committee would have to debate these questions, taking into account the considerable differences of home and community-based LTC settings and these other programs. STUDY ACTIVITIES The planning committee laid out a plan to examine these key questions in a study that would be conducted over an 18-month period and guided by a committee of 16–18 members. Institute of Medicine studies typically include collection of existing data; analysis of that information; and development of conclusions and recommendations that culminates 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 examination. 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

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings a variety of means such as press conferences, briefings, and derivative publications. These elements are described below in more detail. Study Committee Nominees for committee membership are identified through a rigorous process designed to ensure that the committee members individually are distinguished experts in their fields and collectively represent a broad range of perspectives in the study area. The original legislation authorizing the two studies provided specific details about the composition of the study committees. IOM committees can also be advised by a technical liaison panel. Although the actual appointment of committee members and liaison panelists will be the sole responsibility of the IOM and the National Academy of Sciences, the characteristics listed below, derived in part from the legislative mandate, will be taken into account. Committee members will include: health professionals such as physicians and nurses with LTC experience; consumers of home care services or their representatives; residents of residential care facilities (including privately owned facilities) or their representatives; providers of home care services and operators of residential care facilities, including those who operate nonprofit facilities; state officers with responsibility for regulating home care services and residential care facilities; individuals with LTC experience, including nonmedical home care services and legal issues; experts on the administration of drugs to older and disabled individuals receiving LTC services and on the enforcement of life-safety codes in LTC facilities; officials of accreditation organizations; and experts in the field of health services research. Data Collection The IOM committee will examine America's home and community-based LTC system in detail. It will attempt to see that system in action, as revealed by data and as perceived by those involved in it. Although it is anticipated that very little new primary data will be collected, much effort will be directed to synthesizing the large and somewhat disparate research literature, undertaking

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings secondary analyses of existing databases, and weighing and debating the trade-offs inherent in the policies and strategies evaluated. Specifically, the committee will review information ranging from demographic and epidemiologic statistics to agency budgets, program plans, statutes, and regulations. Where appropriate and more efficient, the full study could commission background papers or analyses. In addition, expert panels or targeted workshops could also be convened on specific topics to present and discuss the most current research and thinking. One valuable lesson learned from this committee's invitational workshop was the value of hearing the perspectives of actual consumers of home care services and residents of residential care facilities. To get such input for its workshop, the planning committee pioneered the use of videotaped interviews with consumers of home care services and residents of residential care settings. This could be done again with greater numbers of consumers and residents for the larger study. Additionally, public hearings will be held around the country to allow parties such as consumers, family members, advocacy groups, and industry associations to present testimony on their differing perspectives on the key study questions. Site visits will be conducted at the same time to give committee members further detailed, hands-on experience about the practical implementation and application of quality assurance and improvement strategies. Development of Recommendations and Products The intent of the more comprehensive study is to produce a set of products that will be scientifically sound and of practical value to a variety of audiences. Many of the recommendations from the larger study will be aimed at shaping federal, state, and local government policy. The planning committee feels deeply that the recommendations from the full project should be able to be applied in the “real world ”: by providers who want to improve the quality of the services they provide in practical ways; by federal and state regulators and private accreditors who may wish to modify their standards accordingly; and by consumers and their advocates who can use the report to lobby for changes to ensure that the care they receive and desire is the best possible. CONCLUSION The quality of care in home and community-based settings for older and disabled individuals is a riveting issue. The motivation behind this proposed IOM study is a desire to help inform both the public and its designated policymakers about the nature of the problems this nation is confronting in providing quality care to its older and disabled citizens. The recommendations that emerge from

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings the larger study should be of practical use to a wide range of audiences —consumers, caregivers, regulators, providers, and purchasers—and should encourage all parties to continue to be as innovative as possible in their quest for quality. As noted throughout this report, much is still not known about many of the issues that would be examined in a larger study. This committee urges that more primary research and data collection be done in this critical area. However, the committee also believes that the larger committee will provide a valuable contribution by translating findings from other areas such as quality improvement in hospitals and other acute care settings and by synthesizing what information is already available in the area of home and community-based LTC. The world of home and community-based LTC is evolving rapidly and the recommendations of the planned IOM committee will provide significant direction to the efforts to ensure the provision of high-quality care.

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