Anthropological Analyses of Clinical Ethics and Research Ethics Practice

In the arena of end-of-life medical care, anthropological studies illustrate how decisions to forego technological interventions, such as intensive care, are socially negotiated (Slomka; Kaufman, 1998). Ethnographic findings allow a useful comparison with decision-making ideals based on abstract principles, providing a critique of models of care that evaluate the success of outcomes using a metric based solely on the exercise of patient choice. A review of the empirical literature suggests that the bioethics practices governing end-of-life care (a focus on self-determination, advance care planning, and explicit decisions to forgo life-sustaining treatment) are based on problematic and erroneous assumptions (Drought and Koenig). Studies of bioethics practices applied in culturally diverse clinical settings further illustrate the failure of efforts to enforce universal solutions on complex clinical problems. To fully engage with and respect a patient as a person, what is required is a nuanced understanding of each social environment (Frank et al.; Crawley et al.; Long, 2000; Koenig and Gates-Williams; Koenig and Davies). Anthropologists have also explored the ethical domain of truth-telling, demonstrating the significant impact of cultural difference on beliefs about disclosure of medical information, especially information relevant to diagnosis and prognosis of cancer and other life-threatening illness (Muller and Desmond; Gordon and Paci; Gordon and Daugherty; Orona, Koenig, Davis; Carrese and Rhodes; Kaufert; Long, 1999). Who decides which facts are truthful, whether that truth harms or helps, and who controls disclosure, are all culturally patterned.

Ethics consultation is a common and highly visible clinical application of bioethics. These services, common in U.S. hospitals, are carried out either by an expert consultant, an interdisciplinary ethics committee, or some combination of the two approaches; the goal is assistance with the identification of ethical quandaries and their resolution through bioethical analysis. Anthropological study of the actual practice of ethics consultation reveals the difficulty of simply "applying" bioethics theories in the clinic. A range of issues has been studied, including the nature of clinical disputes that are considered "ethical." In fact, consult requests often stem from non-ethical concerns, such as communication failure resulting from the social dynamics of complex hospital environments like intensive care units. Research has also examined actual decision-making processes by institutional ethics committees, power structures within organizational settings and their influence on consultation outcomes, and the potential for conflicts of interests when ethics consultants are institutional employees (Crigger; Orr et al.; Kelly et al.; Marshall, 2001a).

Voluntary informed consent is considered a universal ethical requirement for good clinical practice and for research with human subjects. However, anthropological studies reveal the ways in which the ideals of informed consent may be constrained in actual practice. The objectives of consent may be undermined by too great a reliance on a narrow conception of the exercise of personal autonomy—one excluding social relationships, by focus on consent as the articulation of a "legal" contract, rather than an ongoing process of communication, and by lack of attention to disparities in knowledge and power between professionals and lay people (Kaufert and O'Neill; Barnes et al.). Sankar demonstrates the critical value of classic observational methods by examining the actual practice of informed consent to research participation. Her analysis reveals how the informed consent process shares many characteristics with ritual; actual reflection and active decision making are not part of the dynamic. Rather, research participants offered informed consent had already made up their minds to participate in the study Sankar observed; going through the process of "consenting" the subject served primarily to inaugurate their participation in the research.

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