What's Missing in Our Thinking About Quality of Life in VCA?

Drawing on the principles of respect for autonomy and beneficence, many scholars have argued that despite significant drawbacks of immunosuppression and surgery, vascularized composite allotransplantation (VCA), such as hand and face transplantation, has the potential to enhance the lives of patients who meet appropriate criteria and are well supported.This article provides a brief overview of the literature on VCA with a focus on hand transplantation (HTx) and offers a critique of the lack of empirical data on HTx patients' perspectives. Quality of Life in Hand TransplantsWithin a few years after the publication of the first journal articles arguing for the ethical and scientific viability of hand transplantation in the modern era of immunosuppression, 1,2,3 hand transplantation (HTx) and other forms of vascularized composite allotransplantation (VCA) had become technically possible, 4,5,6 and they now are viewed as beneficial for properly selected and supported recipients.7,8,9,10 Because reconstructive transplantation, such as hand and face transplantation, does not afford the lifesaving or life-extending benefits that have so far characterized transplant medicine, the permissibility of VCA resides in the potential of these transplants to enhance recipients' subjective quality of life (QoL) for as long as they have their allograft.Realizing potential gains in QoL is complicated, however, by the burdens of lifelong immunosuppression to prevent graft rejection and loss, which can also potentially limit longevity.This essay presents a brief overview of QoL conceptions in the literature on VCA, with a focus on HTx, especially in terms of how HTx patients' quality of life has been imagined and represented by stakeholders writing on the ethicality of these interventions.I argue that the sparse characterization of HTx patients' pre-and posttransplant QoL in papers reporting outcomes data for HTx is an obstacle to knowledge generation and ethical analysis in the field; systematic efforts to describe and understand patients' lived experiences are needed to ground professional discourse on the ethicality of HTx and VCA more generally. Making QoL a Goal of TransplantationThe emergence of QoL as a goal of organ transplantation has been called "a quiet revolution in organ transplant ethics" by Arthur Caplan and Duncan Purves.11