Diminished autonomy and justice in liver transplantation – The price of scarcity?

Abstract

Patient autonomy and distributive justice are fundamental ethical principles that may be at risk in liver transplant units where decisions are dictated by the need to maximise the utility of scarce donor organs. The processes of patient selection, organ allocation and prioritisation on the wait list have evolved in a constrained environment, leading to high levels of complexity and low transparency. Regarding paternalism, opaque listing and allocation criteria, patient factors such as passivity, guilt, chronic illness and sub-clinical encephalopathy are cited as factors that may inhibit patient engagement. Regarding justice, established regional, gender and race based inequities are described. The paradox whereby hepatologists both advocate for individual patients and discharge their duty of stewardship to apportion organs according to larger utilitarian principles is explored. Competing subjective factors such as physicians’ perception of moral responsibility, the qualitative nature of expert medical assessment and institutional or personal loyalty to re-transplantation candidates are described. Realistic limits of self-determination and justice are discussed, and possible future directions in terms of patient involvement proposed.