The gaps between the current long-term care system and an ideal system are great. Bridging those gaps will not be easy. Perhaps the best weapon for doing so is education. Only when all involved understand the nature of long-term care—how it works and how it could work—will there be significant progress.
A. The long-term care system should include community education.
The public must be informed about long-term care, including available service options, limitations, and access methods. One of the most striking characteristics of the current system is the general lack of understanding about what the long-term care system offers, how it is accessed, who is eligible, and what is covered. While those who manage the system—the providers, payers, regulators, and policy makers—have done a pretty poor job of educating the public, they are not the sole cause of the problem.
There are numerous other factors at work here. To begin with, as we explained earlier, the system is so complicated it tends to defy easy understanding. Second, the public has not been particularly interested in becoming better educated concerning long-term care, nor have they really had to be. It, like other forms of health care, has historically been provided for them, with little emphasis on whether they understood it or wanted it. They had little say in the matter, or at least thought so. One of the reasons they have not been interested in learning more about long-term care is that they have been given the impression that it would be provided for them. So, why worry? Neither Medicare nor Medicaid was meant to meet all of the healthcare needs of the elderly or the medically indigent, but the political hoopla with which they were introduced led many to believe that they would.
Times have changed and with them, the need for public education. No matter how good the system is, people cannot use it effectively unless we turn them into informed consumers. Our ability to do that will be critical to the success of any future system of care. None of these Criteria can be realized without an effective education component. To date, that component has been mostly ineffective.
There is an interesting, and paradoxical, aspect of this problem. If we were to search out and catalog the consumer information that now exists concerning long-term care, the amount of such information available would probably be surprising. So would the quality and accuracy of that information. So, why is it not getting to consumers? Why is it not effective in making them better informed? The problem is not always lack of information, but often involves ineffective delivery of that information. While much information is currently available, it is not meeting the need. Barriers to achieving the ideal include consumer apathy; fragmented, conflicting, and/or overlapping sources of information; and inadequate, inconsistent methods of delivering the information.
In part, for the reasons just mentioned, consumers are not really looking for it, nor do they yet see the need for it. When they do seek information about long-term care, it is usually when they need to access the system immediately, which is too late in most cases. At that point, they are too emotionally involved and under too much pressure to fully comprehend all of the necessary information. To be effective, consumer education must take place long before the onset of need for services. It should preferably take place over a period of years so that consumers and their families are prepared to make the necessary choices.
Another reason long-term care information does not get to consumers adequately is that it is fragmented, comes from many uncoordinated sources, is not comprehensive, and is not uniformly available. Elderly advocacy organizations such as AARP (formerly known as the American Association of Retired Persons) and the National Council of Senior Citizens provide a great deal of information. Yet, by their very nature, those organizations cover very broad areas of interest to the elderly, such as retirement planning, leisure activities, and investments. Their focus on long-term care tends to be more related to protecting the rights of their constituents, but with limited information about how to actually access and use the long-term care system effectively.
On a more local level, area agencies on aging (triple As) usually provide a great deal of information about local long-term care services and how to find them. They also cover a much broader scope than just long-term care. However, because it is so critical to those they serve, long-term care issues are prominent with them. The drawback with the triple As is that they serve a defined constituency of the elderly and do not cover the full spectrum of long-term care consumers.
Providers often supply information for consumers. Some, motivated by both a sincere desire to serve and a wish to increase their market share, have been quite innovative. Toll-free information telephone lines, media advertisements, and public lectures are becoming common. Some have even opened their own “storefront” information centers, providing access and referral materials. They, of course, focus on their own services, not those of competitors. Retirement planning seminars, available to organizations or other groups, include information about long-term care.
Consumers seeking an overall education about long-term care must examine all of these sources and attempt to assimilate the information on their own. That assumes that they know where to look in the first place—not a simple task in and of itself.
The system must find better methods of coordinating available information, supplementing it when necessary, and bringing it to the attention of the public. Technological advances will assist somewhat. As more people have gained access to the Internet, they have found a great deal of information about long-term care readily available. Information is already available on computer disks and CD-ROMs and through interactive computer education programs for those who are computer proficient. While many of the elderly are not computer literate, an increasing number are. For some, other, more traditional information delivery modes work best, while others rely heavily on web-based information. The answer to what works best for the general public is all of the above. A variety of consumer education methods is required. As with the long-term care system itself, coordination is critical to the success of these efforts.
B. The long-term care system should include education for providers.
The system should provide for more geriatric education for physicians and others dealing with the elderly. Far too often, healthcare professionals fail to understand the differences between the elderly and younger patients. As we age, we encounter changes in our physiology that play a large part in determining our care needs. Changes such as increasingly fragile bones must be taken into account when treatment plans are developed. While those changes occur more slowly for some than for others, they can be expected by most. In addition to those physical changes, there may also be some decrease in memory or other cognitive ability.
Healthcare providers cannot serve the elderly adequately without a good understanding of the aging process. They must be trained to recognize the stages of that process and to treat their patients appropriately. Today, many are not. One of the most common results of that lack of training is the tendency to treat all older people as physical and mental invalids. They are individuals, with individual abilities, desires, and needs.
As the locus of care shifts more and more from hospitals to long-term care facilities or agencies, the need to educate healthcare professionals about the needs of the chronically ill will grow. While most long-term care providers understand those needs and respond well to them, other providers, including those in acute care, need to be educated more than they are at the present time.
C. The long-term care system should educate young, healthy persons to better prepare them to cope with chronic illness.
The time to deal with chronic illness and its accompanying disability is long before the onset of that illness. The long-term care system should place more emphasis on preventive education of future consumers. A better understanding of chronicity will lead to better acceptance of chronic illness in individuals and family members, and more effective, efficient use of available resources. Both they and the overall system will benefit.
When long-term care consumers do not know how to use the system, inappropriate use of services by those consumers is unavoidable. That inappropriate use of services means less-than-optimum results for the consumers. It is also inefficient. Young and middle-aged people are accustomed to using acute care services and are comfortable accessing them. They usually have little experience dealing with long-term care, do not understand what is available, and simply avoid it. They can learn to use the full continuum, but not without a consistent, concentrated consumer education effort.
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