Beyond Autonomy: A Theological Anthropology for Pediatric Bioethics
Bratt Carle, Jessica Lynne
Narrow and oversimplified views of children animate the contemporary adult-centric healthcare landscape. The dominant principlist approach in medical ethics reinforces those constrained views by giving disproportionate attention to the principle of respect for autonomy. Based on medical ethicists Tom Beauchamp and James Childress’ Principles of Biomedical Ethics (1st ed., 1979), the principlist model identifies respect for autonomy as one of four key principles to guide medical ethics, along with beneficence, nonmaleficence, and justice. Patient autonomy and autonomous choice became enshrined as chief concerns in bioethics and continue to feed a clinical imagination that envisions the paradigmatic human being as an independent, unencumbered, rational decision-maker. Children are automatically deemed non-autonomous in the principlist model, and thus are relegated to a peripheral category of persons from the outset. While acknowledging children’s real needs for adult guidance and protection, I argue that their full humanity deserves greater recognition particularly in the hospital setting, where the important moral weight of children’s own experiences and meaning-making can be all too easily overlooked in the midst of preoccupation with adult decisions. I argue that pastoral theology, drawing on interdisciplinary resources such as childhood studies, can inform a theological anthropology that provides a counterexample to the narrow human ideal reinforced by overemphasis on autonomy. Drawing on the work of pastoral theologians and my experience as a pediatric chaplain, I propose three features of a theological anthropology to better describe hospitalized children and enrich pediatric bioethics: vulnerability, dependence, and agency. While not exhaustive, these three address and respond to crucial limitations of existing interpretations of autonomy. Furthermore, this theological anthropology not only fosters a broader understanding of children, but also reinvigorates our appreciation of what it means to be fully human throughout the lifespan. This project provides theological grounding to insist that bioethical discourse must engage the complex realities of children and childhood in order to recognize and respond to their full humanity in the clinical setting.