The world of home and community-based long-term care (LTC) is undergoing a major transformation. At every level of government, policymakers and lawmakers are proposing fundamental changes in the way such care is financed and delivered. Private industry is expanding rapidly in this area to meet the needs and preferences of the growing population of potential users. At the same time, older and disabled individuals alike are beginning to demand higher-quality services that better reflect their preferences. How the world of LTC will fare and what it will look like in the future remain open questions.
Some observers have already begun voicing concerns about imminent calamity: care that is provided in a “black box,” out of the public's sight; a vulnerable population that is growing rapidly; caregivers pressured to provide more care with fewer resources; fraudulent companies and abusive workers exploiting defenseless consumers; the rapid move to managed care with clear financial incentives to underserve consumers and restrict access to services; and already-limited LTC services that are being cut back further or eliminated altogether.
Other observers see the opportunity for vast improvement over today 's situation. They welcome the move away from a service delivery system that they view as too medically oriented, one that places more emphasis on curing diseases than on caring for people's needs. A focus on consumers' rights and preferences would humanize the services that are provided and help ensure that issues such as privacy, personal choice, and autonomy are given a high priority. Managed care offers the possibility of better coordination and accountability of care being provided at a lower cost. These observers also foresee a quality assurance system that focuses less on outliers, or on getting rid of the arguably small percentage
of truly bad providers, and more on the continuous improvement of quality by all providers. Theoretically, such a system would be better at preventing poor quality from occurring in the first place.
Quality assurance and improvement programs to provide oversight to this rapidly changing system are only beginning to be developed and implemented. Chapter 3 identifies several problem areas in regard to the overall appropriateness, effectiveness, and adequacy of existing quality assurance and improvement programs. This committee hopes the programs that eventually evolve will both address the concerns and capitalize on the opportunities presented by this extraordinary transformation. It also hopes that the development of such programs will be guided not merely by the desire to avoid bad outcomes, but also by the goal of improving the care that individual consumers receive. Clearly, a balance of strong external and internal programs to ensure quality will be needed.
Who will decide how to achieve a good balance? Consumers and their families have an obvious role in defining and achieving quality LTC services, and efforts need to be undertaken to ensure that their needs and preferences are at the heart of the evolving quality assurance and improvement system. Yet, families must also be considered in another dimension—in their roles as providers of care. Many issues remain unresolved regarding the extent to which government and other official organizations can apply judgements to the quality of the care provided by these informal providers.
Government clearly has a role to play. In the words of one committee member, “Federal and state governments have continuing responsibilities for establishing and enforcing a minimum definition of quality and for fostering the conditions under which programs can be innovative, responsive to consumer preferences, and encouraged to exceed minimum standards” (Kane, 1995, p. 9). In lieu of federal action, some states are moving ahead on their own to develop carefully conceived and comprehensive quality assurance and improvement programs. The committee applauds and encourages their important efforts. At the same time, it recognizes that other states have done relatively little in this area. The study called for in this report will provide a rallying point and blueprint for all of them.
The Institute of Medicine (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.