The discourse of advance care planning: End-of-life decision-making in a multicultural population of cancer and AIDS patients

This study examines the processes and practices of planning for end-of-life decisions in a multi-cultural population of patients dying from cancer or AIDS. Interview data from the Ethics and Cultural Pluralism project, a 5-year multilingual empirical study of the effects of bioethics on clinical practice were used. In this secondary analysis, I use the concept of discourse to interrogate the bioethics conventions, the clinical practices, and the patient and provider concerns that inform and reflect end-of-life decision-making in general and advance care planning in particular. Advance care planning is supported by the philosophical foundations of bioethics and is championed as a model for clinical practice as evidenced by the SUPPORT study.; I trace developments within biomedicine, bioethics, public policy and law that have coalesced into the discourse of advance care planning and its current performance in clinical practice. The analysis focuses on the ways individuals perform, resist, and subvert engagement with the discourse. The advance care planning discourse is an example of Foucault's notion of biopower in that it is simultaneously a discipline applied to the body and a means of regulating populations. As such, it can also be a creative source for resistance and change. The discourse of advance care planning has achieved wide spread acceptance by health care professionals, patients, and the public, yet its application to the particular individual is consistently resisted.; The main precepts of advance care planning—autonomy, choice, and early recognition, acceptance, and planning of terminality—deny the concerns of patients and providers in the clinical setting. The discourse can require a violation of the meaning-giving self, the subjective experience of the individual, as it distracts attention from an engagement with shared decision-making within the illness context by short-cutting the negotiative process. The discourse directs attention to particular tasks (getting a DNR order) rather than toward a decision-making process that acknowledges and incorporates the meanings, concerns, and subjective experience of both the provider and the patient. The decision-making model implicit in advance care planning creates potential conflicts between patients and providers by failing to acknowledge the limits of both patient choice and medical power.