A New Long-term Care Manifesto
A New Long-term Care Manifesto
This article argues for a fresh look at how we provide long-term care (LTC) for older persons. Essentially, LTC offers a compensatory service that responds to frailty. Policy debate around LTC centers on costs, but we are paying for something we really don't want. Building societal enthusiasm (or even support) for LTC will require re-inventing and re-branding. LTC has three basic components: personal care, housing, and health care (primarily chronic disease management). They can be delivered in a variety of settings. It is rare to find all three done well simultaneously. Personal care (PC) needs to be both competent and compassionate. Housing must provide at least minimal amenities and foster autonomy; when travel time for PC raises costs dramatically, some form of clustered housing may be needed. Health care must be proactive, aimed at preventing exacerbations of chronic disease and resultant hospitalizations. Enhancing preferences means allowing taking informed risks. Payment incentives should reward both quality of care and quality of life, but positive outcomes must be defined as slowing decline. Paying for services but not for housing under Medicaid would automatically level the playing field between nursing homes (NH) and community-based services. Regulations should achieve greater parity between NH and community care and include both positive and negative feedback. Providing post-acute care should be separate from LTC. Using the tripartite LTC framework, we can create innovative flexible approaches to providing needed services for frail older persons in formats that are both desirable and affordable. Such care will be more socially desirable and hence worth paying for.
The upcoming White House Conference on Aging prompts us to confront the challenge of long-term care (LTC) in an aging society. We cannot simply do more of the same. Rather, we should envision ways to deliver affordable LTC that allows recipients a livable life. Creating public support for meaningfully improving LTC will require a new public discourse, one based on a positive model for LTC, one that people see as worth supporting. This article offers some admittedly strong suggestions about why and how we might reconceptualize LTC.
Let's start by acknowledging a few basic truths. The LTC system is not what anyone would have designed. It has grown in fits and starts with one eye on efforts toward improving clients' function and the other on market opportunities, all done in the context of heavy regulation. The resulting system (certainly the predominant publicly funded system) has been shaped by payment policies and regulations; the latter have generally emerged in response to scandals or concern about quality; they emphasize technical care that reflects strong concerns about safety. We worry a lot about how to control the public costs of LTC; the major debates and planning efforts have centered on better ways to pay for LTC (e.g., the Pepper Commission and the CLASS [Community Living Assistance Services and Supports] Act (The Pepper Commission, 1990). One (often underappreciated) way costs are already held in check is through informal care, which has always been the backbone of LTC. Informal caregivers are the unsung heroes of LTC. The cost burden they eliminate should be acknowledged more. Moreover, informal care often presents a serious financial burden to families (Arno, Levine, & Memmott, 1999; Fast, Williamson, & Keating, 1999; Konetzka, 2014; Van Houtven et al., 2013). Without a lot of informal care, we're in big trouble.
The demographic forecasts remind us that we cannot afford to continue along our present course. We cannot serve substantially more people with a smaller labor force that provides both care and public money. But the elephant in the room is the fact that we are already paying a lot of money for care few people really want. Even those who can buy care privately have great difficulty finding the care they want (Kane & West, 2005). Indeed, we are foisting on our parents care we would not want for ourselves. We continue to patch the roof on a house that is structurally compromised and woefully out of date.
The LTC situation has become more confused because nursing homes (NHs), which are major providers of LTC, have seized a well reimbursed opportunity to expand their book of business into post-acute care (PAC). The post-acute care market created by the change in hospital payment under the imposition of DRGs enticed them into the more lucrative world of Medicare. Now institutions, many of which did not do a stellar job of LTC, were trying to provide a different level of care for which they were even less well prepared (Kane et al., 1998; Kramer et al., 1997; Medicare Payment Advisory Commission, 2014). Likewise, home care (an LTC service) is conflated with home health care (a post-acute care service), and this confusion has become greater as the rules about Medicare coverage for home health care have changed. Discussions and analyses about LTC often fail to distinguish LTC from PAC.
The basic components of LTC are straight forward. They require an effective merger of housing (room and board), personal care, and medical care (largely chronic disease management). Figure 1 shows this conceptually. Each care recipient can be defined by a unique cell inside this matrix. Once the implied service needs have been identified a package should be tailored to an individual's needs and wants. A key precept is that many different service packages can be assembled to meet a given profile of needs. Cost and financial means cannot be ignored but should be treated as modifying factors rather than central engines. Some elements (like personal care services, for at least core services) might be thought of as universal entitlements, while other components may be more varied by ability to pay. A person could get the same level of personal assistance in living situations that vary in their level of amenities. In some instances, efficiency may require relocation. For example, someone who needs personal care several times a day may need to live in a more congregate setting because travel costs for caregivers are prohibitive; however, this need not mean sharing room with a stranger. Dwellings like apartments are conducive to sharing service resources without incurring extensive staff travel time. They still allow clients to preserve their autonomy and control their living situation.
(Enlarge Image)
Figure 1.
A conceptual model of long-term care.
Abstract and Introduction
Abstract
This article argues for a fresh look at how we provide long-term care (LTC) for older persons. Essentially, LTC offers a compensatory service that responds to frailty. Policy debate around LTC centers on costs, but we are paying for something we really don't want. Building societal enthusiasm (or even support) for LTC will require re-inventing and re-branding. LTC has three basic components: personal care, housing, and health care (primarily chronic disease management). They can be delivered in a variety of settings. It is rare to find all three done well simultaneously. Personal care (PC) needs to be both competent and compassionate. Housing must provide at least minimal amenities and foster autonomy; when travel time for PC raises costs dramatically, some form of clustered housing may be needed. Health care must be proactive, aimed at preventing exacerbations of chronic disease and resultant hospitalizations. Enhancing preferences means allowing taking informed risks. Payment incentives should reward both quality of care and quality of life, but positive outcomes must be defined as slowing decline. Paying for services but not for housing under Medicaid would automatically level the playing field between nursing homes (NH) and community-based services. Regulations should achieve greater parity between NH and community care and include both positive and negative feedback. Providing post-acute care should be separate from LTC. Using the tripartite LTC framework, we can create innovative flexible approaches to providing needed services for frail older persons in formats that are both desirable and affordable. Such care will be more socially desirable and hence worth paying for.
Introduction
The upcoming White House Conference on Aging prompts us to confront the challenge of long-term care (LTC) in an aging society. We cannot simply do more of the same. Rather, we should envision ways to deliver affordable LTC that allows recipients a livable life. Creating public support for meaningfully improving LTC will require a new public discourse, one based on a positive model for LTC, one that people see as worth supporting. This article offers some admittedly strong suggestions about why and how we might reconceptualize LTC.
Let's start by acknowledging a few basic truths. The LTC system is not what anyone would have designed. It has grown in fits and starts with one eye on efforts toward improving clients' function and the other on market opportunities, all done in the context of heavy regulation. The resulting system (certainly the predominant publicly funded system) has been shaped by payment policies and regulations; the latter have generally emerged in response to scandals or concern about quality; they emphasize technical care that reflects strong concerns about safety. We worry a lot about how to control the public costs of LTC; the major debates and planning efforts have centered on better ways to pay for LTC (e.g., the Pepper Commission and the CLASS [Community Living Assistance Services and Supports] Act (The Pepper Commission, 1990). One (often underappreciated) way costs are already held in check is through informal care, which has always been the backbone of LTC. Informal caregivers are the unsung heroes of LTC. The cost burden they eliminate should be acknowledged more. Moreover, informal care often presents a serious financial burden to families (Arno, Levine, & Memmott, 1999; Fast, Williamson, & Keating, 1999; Konetzka, 2014; Van Houtven et al., 2013). Without a lot of informal care, we're in big trouble.
The demographic forecasts remind us that we cannot afford to continue along our present course. We cannot serve substantially more people with a smaller labor force that provides both care and public money. But the elephant in the room is the fact that we are already paying a lot of money for care few people really want. Even those who can buy care privately have great difficulty finding the care they want (Kane & West, 2005). Indeed, we are foisting on our parents care we would not want for ourselves. We continue to patch the roof on a house that is structurally compromised and woefully out of date.
The LTC situation has become more confused because nursing homes (NHs), which are major providers of LTC, have seized a well reimbursed opportunity to expand their book of business into post-acute care (PAC). The post-acute care market created by the change in hospital payment under the imposition of DRGs enticed them into the more lucrative world of Medicare. Now institutions, many of which did not do a stellar job of LTC, were trying to provide a different level of care for which they were even less well prepared (Kane et al., 1998; Kramer et al., 1997; Medicare Payment Advisory Commission, 2014). Likewise, home care (an LTC service) is conflated with home health care (a post-acute care service), and this confusion has become greater as the rules about Medicare coverage for home health care have changed. Discussions and analyses about LTC often fail to distinguish LTC from PAC.
The basic components of LTC are straight forward. They require an effective merger of housing (room and board), personal care, and medical care (largely chronic disease management). Figure 1 shows this conceptually. Each care recipient can be defined by a unique cell inside this matrix. Once the implied service needs have been identified a package should be tailored to an individual's needs and wants. A key precept is that many different service packages can be assembled to meet a given profile of needs. Cost and financial means cannot be ignored but should be treated as modifying factors rather than central engines. Some elements (like personal care services, for at least core services) might be thought of as universal entitlements, while other components may be more varied by ability to pay. A person could get the same level of personal assistance in living situations that vary in their level of amenities. In some instances, efficiency may require relocation. For example, someone who needs personal care several times a day may need to live in a more congregate setting because travel costs for caregivers are prohibitive; however, this need not mean sharing room with a stranger. Dwellings like apartments are conducive to sharing service resources without incurring extensive staff travel time. They still allow clients to preserve their autonomy and control their living situation.
(Enlarge Image)
Figure 1.
A conceptual model of long-term care.
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