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Improving the Quality of Long-Term Care
appropriate his or her agent) is an essential part of the quality of longterm care. Quality of life includes outcomes such as consumer choice and autonomy, dignity, individuality, comfort, meaningful activity, meaningful relationships, sense of security, and spiritual well-being (Noelker and Harel, 2000). As the report indicates, Health Care Financing Administration is currently funding a major effort to develop and test measures and indicators of such quality of life outcomes. Other researchers have also had considerable success in developing consumer self-report measures of quality of life, including persons with considerable cognitive impairment (Brod et al., 1999; Logsdon et al., 1999; Uman, 1995). Although long-term-care providers cannot be fully responsible for quality of life outcomes (which are also a function of health and disability status, family composition, and personality), long-term-care programs and settings can act to enhance or to retard these quality of life outcomes. The current regulatory system was not designed with quality of life issues as the focus.
If quality of life is seen as a legitimate goal of long-term care, the consumer's view of quality may sometimes involve conditions and circumstances that professionals view as a threat to health or safety. This tradeoff and the possibility that consumers might knowingly assume risks in order to maximize other benefits were not expressed in the final version of the report, yet it is an important reality (Kapp 1999; Kapp and Wilson, 1995; Kane and Caplan, 1993; Clemens et al., 1994). Even though there have been relatively few discussions or studies of how consumers and providers relate to these tradeoffs, the tradeoffs are widely recognized to occur routinely across all settings (Degenholtz et al., 1997).
Consumer-centered care (including consumer-directed care) is extensively discussed in the report. Consumer-centered care calls for the consumer (or his or her agent) to be involved to the extent desired and practical in all goal-setting and planning for care and to have direct input into the evaluation of his or her care. Consumer-directed care is a term sometimes reserved for situations where consumers are completely responsible for hiring, training, supervising, and evaluating the care that they receive. The report mistakenly described consumer-centered care as largely applicable to personal assistant services received by people under age 65. In fact, such principles are widely applicable to and have increasingly been applied to older people receiving care in a variety of settings.
The report marginalizes “consumer-centered care,” stating that it is not for all people. This, we believe, is a misunderstanding of the concept. The principle of consulting consumer preferences directly or through their