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Extending Life, Enhancing Life: A National Research Agenda on Aging
Proxy Consent for Incompetent Patients
Consent by a family member or a close friend may not meet the standard of substituted judgment, which states that the proxy has given consent or refusal as desired by the incapacitated subject (Tymchuck et al., 1988). Studies have shown that proxies often give consent based on their own value system, not that of the patient. Thus, the practice of obtaining consent from relatives of incapacitated patients needs to be reevaluated. Several methods to improve such substituted judgment should be considered, such as education of the public and, in particular, of relatives of patients eligible for research studies in the concept of proxy consent to research participation. Furthermore, educational interventions aimed at the elderly could encourage them to give advance directives for participating in research, just as they are encouraged to do for medical care decisions.
Institutional ethics committees might evaluate the appropriateness of a proxy's consent. In some situations, the appropriate standard for participation of incompetent patients in research might be that of the patient's best interests (Warren et al., 1986). Research and further discussion should disclose the specific situations in which the best-interest standard is most appropriate.
Attitudes Toward Participation in Research
Philosophers have posited that research should be a partnership between investigator and subject in which both parties understand the potential benefits to the patient and to the larger society (Fletcher et al., 1985; Veatch, 1987). However, some older people fear being research subjects (Faden and Beauchamp, 1986). Institutional safeguards are enacted based on the assumption that exploitation is possible, or even probable, without such protection. Thus, it becomes important to examine public attitudes about research. What responsibility does an ill person have to participate in research designed to understand and ameliorate conditions afflicting himself and others of a similar age? What discourages an elderly person from participating in research, and how might those barriers be overcome? Understanding how elderly people answer these questions would further our nation's sense of mission regarding research on aging.
Research Review in Long-Term Care
Although an increasing amount of research is being conducted in nursing homes, the process of review through institutional review