Beyond Autonomy: Ethics of Decision Making About Treatments for Kidney Failure at the Extremes of Age

Abstract

Decisions around initiating and forgoing treatments for kidney failure are complex, and contemporary approaches to medical decision making are designed to uphold patients' own preferences and values when there are multiple clinically reasonable treatment options. When patients do not have cognitive capacity to make their own decisions, these models can be adapted to support the previously expressed preferences of older adults and to promote open futures as autonomous persons for young children. Nonetheless, an autonomy-focused approach to decision making may not align with other overlapping values and needs of these groups. Dialysis profoundly shapes life experience. Values framing decisions about this treatment extend beyond independence and self-determination and vary between life stages. Patients at the extremes of age may place a strong emphasis on dignity, caring, nurturing, and joy. Models of decision making tailored to support an autonomous individual may also discount the role of family as not only surrogate decision makers but stakeholders whose lives and experience are interwoven with a patient's and will be shaped by their treatment decisions. These considerations underline a need to more flexibly incorporate a diversity of ethical frameworks to support medical decisions, especially for the very young and old, when facing complex medical decisions such as initiating or forgoing treatments for kidney failure.