Listening to face transplant patients and caregivers: how medical humanities approaches redefine surgical 'success'.

Abstract

A recent review of face transplants argues that overall, they have been successful. But this verdict is based on surgical measures rather than patient-reported outcomes (PROMs), which for historical reasons are in their infancy. These measures are critical to understanding the nature of success in face transplants, and the evidence from mixed systems of healthcare, as in the USA, reveals that there are significant ethical and social concerns about the well-being of patients. Medical humanities research that focuses on the lived experience of patients and their caregivers can contribute significantly to the discussion by focusing on patient voices and the measures that matter outside of surgical contexts. This article builds on existing work and original interviews with face transplant recipients and their families from an emotion history perspective. It argues that surgical measures used in isolation can be misleading. We need a more holistic understanding of outcomes-financial, psychological and emotional as well as medical-that requires the insights drawn from the humanities and transforms the definition and measurement of 'success'.