Finding the subject in the objectified: Problematizing the dependence on metrics for patient care in the United States

Abstract

The US Patient Self Determination Act of 1990 sought to provide the legal rights of patients to document their wishes concerning their current and future care. However, nearly 30 years after this legislation went into effect many individuals and families still struggle with end-of-life care planning, receive a lack of continuity of care, and experience insufficient communication with health-care practitioners concerning their treatment wishes for end-of-life care. Although numerous studies have linked age, sex, race, and/or ethnicity with the completion of advance directives, this research does not support any such correlations, but instead suggests that other, often overlooked, variables may influence the completion of advance directives. These variables include the differential treatment of patients based on the caregiver’s assumptions of linkages between patient compliance and demographic groupings, as well as the likelihood that caregivers will engage in dialogue that facilitates an understanding of the concerns and meanings patients attribute to end-of-life decision making; and the inherent difficulties that caregivers experience in approaching the increasingly quantified patient as a subjective individual. Reducing the understanding of why patients do not complete advance directives to aggregated groupings to which the patient purportedly belongs not only perpetuates stereotypes that can potentially foster inequitable health care, but more so may also prohibit any exploration into the actual reasons that compromise the completion of advance directives and, thereby, thwart the ability to resolve these issues and improve patient care.