Academic journal article Generations

The Science and Ethics of Long-Term Care

Academic journal article Generations

The Science and Ethics of Long-Term Care

Article excerpt

As a researcher and polly analyst in aging, I have been puzzled by the wide and arguably growing gap between, on the one hand, what we know about the long-term-care preferences of the elderly for community-based alternatives to institutional care and about our capacity to provide these alternatives cost effectively and, on the other hand, the kind of care, mostly institutional, we have in fact made available.

Even though over the last several years we have learned how to make community-based programs affordable, long-term care remains dominated by nursing homes in the vast majority of states. This failure to use what we know to change long-term care in ways vastly preferred by those at greatest risk of needing care (the frail elderly) reflects less a gap in knowledge than a lapse of moral imagination.

We have not paid sufficient attention to the ethical dimension of the debate over healthcare policy for the elderly, especially the frail elderly with chronic conditions and impairments requiring long-term care. We have been absorbed with cost-containment, efficiency, and costeffectiveness issues and have tended to pay little attention to the many ethical and moral assumptions inherently related to these issues, which are most commonly treated as technical matters. I think this situation is a manifestation of what Taylor (1991) has described as the domination of"instrumental reason"-pure, self-verifying rationality, mathematical calculations, for example, divorced from messy real life-in the conduct of contemporary policy studies and in policy making.

Instrumental reason, as described by Taylor, has dominated our thinking about long-term-care policy and practice. Many of us, I think, have long believed that we were just one or two big studies short of having the evidence needed to make a conclusive case for the cost-effectiveness of home- and community-based alternatives to nursing homes and the creation of a consumer-oriented long-termcare system. I am now convinced, however, that we cannot rely on either cumulative learning from multiple research projects or a "big bang" breakthrough (the big study) to achieve a basic change in long-term-care policy In other words, the science of long-term care will not do the work of the moral imagination in the development of a long-term-care system that is fundamentally responsive to what the frail elderly and their caregivers want and deserve.

We already have a body of research that demonstrates the capacity of community-based programs to serve the seriously impaired in a cost-effective fashion. These studies have found that by making available certain services to highrisk recipients in increased quantities (number of nurse visits, hours of homemaker services, etc.) community programs may reduce nursing home use. Findings reported in recent articles by Jette, Tennstedt, and Crawford (1995), Greene and colleagues (1995), and Weissert (1995, I997) indicate that certain mixes of clients and services have the potential to reduce nursing home use substantially.

We certainly need more research like these studies. We should not, however, expect that the results of research alone will create sufficient conditions for a profound change in the direction of long-term-care policy. Such change will require a collective change of heart that is fundamentally dependent on the creation of a clear moral vision for long-term care. Research can help us identify the most efficient and consumerresponsive methods of achieving policy priorities inherent in a moral vision. Research is not, however, a substitute for the kind of moral reasoning we need to undertake as a community. We must be mindful of fiscal constraints, but not to the extent that the only option most older people end up with is institutional care. And, as is well described by George Agich (I993) in his discussion of autonomy and long-term care, we must abandon our "all or nothing" attitude toward autonomy and independence:

The lack of adequate long-term care insurance, induding home care services and support in this country, often makes illness or disability for elders an all or nothing choice: either one accepts full dependence in a hospital or nursing home because medical problems are not attended to in a timely fashion, or one struggles with the functional disabilities associated with the illnesses of being old without adequate care until disaster arrives. …

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