Engaging the Dignity of Risk in Home Hospice Care.

Abstract

Managing risk is a necessary component of living a full moral life. Evaluating which risks are acceptable, for what reasons, in what conditions, and then taking actions based on those evaluations, are exercises of moral agency-of intentionally actualizing values that shape an embodied personhood. Health-care institutions in the United States are risk averse, designed to manage risk in ways that can impede the full exercise of patients' moral agency. Home hospice care, conceived as an alternative to institutionally based end-of-life care and driven explicitly by patient goals and values, would seem to be an environment in which patients are empowered to express the full spectrum of their personhood-including making decisions about risk consistent with their values. While home hospice patients have more discretion over risk than patients receiving care in institutions like hospitals and nursing homes, efforts to limit that discretion abound. Such limits can be experienced by patients as failures to recognize their dignity as persons, even while those limits are perceived by others as necessary to preserve that very dignity by keeping them safe. This article uses a running case study to reconceptualize "risk" in home hospice care by (1) challenging the clinical assumption that physical harm is the most important lens through which to view risk, and (2) presenting and applying the concept of positive risk-taking as one way to develop the concept and assessment of risk more fully.