The emergence of facial vascularized composite allotransplantation (fVCA) was accompanied by rigorous ethical debate around subjecting patients to high-stakes experimental procedures described as “non-vital” and “elective.” As we approach the 50th global face transplant and many of the concerns surrounding its technical feasibility have been resolved, the early framing of face transplantation as nonessential to biological life has shifted to discussions over funding and resource allocation. We contend that current approaches to health care resource allocation do not account for the complex ethical dilemmas raised by fVCA, specifically in the critical period between presentation to the hospital and stabilization. Here, we explore the limitations of current models in addressing the stakes of fVCA, highlighting the often-overlooked phenomenon of social death as described by sociologist and disability studies scholar Heather Laine Talley.1 In sharing the experiences of our own patients and the stigma of facial loss, we illustrate the very real consequences of facelessness and examine the potential of recognizing social death as a new consideration in resource allocation.

BACKGROUND

In 2017, prominent bioethicists Arthur Caplan and Duncan Perves described a “quiet revolution” in the moral logic of transplant medicine, whereby the stated purpose of intervention shifted from “securing a greater quantity of life” to “improving quality of life with the risk of serious harm.”2 For fVCA, in particular, the benefits of transplantation must be weighed against the risk of chronic immunosuppression, the likelihood of poor functional outcomes, and the possibility of rejection leaving the patient in a worse state than before. Bioethicists have been particularly critical of fVCA, comparing it to solid organ transplantation and asserting that long-term immunosuppression will necessarily limit the lives of those receiving treatment. However, as face transplantation has not yet been shown to extend or shorten life, the risk profile is similar to those made at the initiation of kidney transplantation, whose life-extending potential over dialysis was only determined decades after its routine clinical use.3 By framing fVCA as “nonvital” or “appearance/function-enhancing,” both surgeons and ethicists reinforced the perception that face transplantation was a matter of quality of life (QoL) and did not command the same moral weight as biologically life-saving procedures.

In 2019, a systematic review of fVCA ethics literature by Liu et al demonstrated that, while the debate over the permissibility of performing the procedure had all but resolved, concerns over the extreme cost of intervention have come to the fore.4 While overall cost is expected to decrease with gains in efficiency and experience, the mean 1-year cost of fVCA in 4 patients was $337,360 compared to an estimated $155,475 (95% CI: $69,021-$241,929) for conventional reconstruction of identical defects.5 Although closer than previous approximations, the increased financial burden requires justification.

In line with standard cost-benefit analysis, the benefits of fVCA are often discussed in terms of QoL, using standardized metrics (ie, QALY and DALY) to weigh the physical, emotional, and social benefits of intervention against living without treatment.6 However, these metrics are employed inconsistently and often result in nonsignificant quantitative evidence that stands in stark contrast to the overwhelmingly positive qualitative reports by recipients and care teams.7 To address this discrepancy, researchers have called for the development of an fVCA-specific assessment to capture the unique considerations at play in severe facial disfigurement.8

At this crossroads, we propose the inclusion of both allotransplant recipients and potential candidates whose care teams chose to withdraw care in the development of a novel QoL tool better suited to capture the complex ethical landscape governing the care of this complex patient population. In the immediate aftermath of traumatic injuries treatable by fVCA, medical decision-making often revolves around the acute valuation of whether life without a face is worth living. In the critical period between injury and medical stabilization, the promise of acceptable reconstructive options may determine whether caregivers choose to withdraw care, adding a new variable not currently recognized in standard health care resource allocation. We contend that this variable is ethically relevant and must be included in considerations of fVCA coverage.

SOCIAL DEATH

To support our position, we draw upon the research of social theorist Heather Laine Talley in understanding the lived experience of facial disfigurement. Social death, as defined by Talley, refers to the systematic devaluation of individuals with facial disfigurement resulting in the destabilization of social networks and a compromised sense of individual identity.1 According to Talley, the human face is “both part of the body and a critical social symbol, capable of mediating human subjectivity and personhood.”1 The phenomenon is driven by the widespread tendency to depict the experience of facial difference as one limited to constant suffering and social isolation, inspiring patterns of social interaction that in themselves limit the affected individual’s possible ways of being in the world.

Beyond limiting its effects to the psychological, Talley argues that social death is “deeply intertwined with one’s status as biologically living,” noting how it “facilitates and may even expedite clinical death given that treatment of disease or resuscitation efforts … often stop once a person is understood to be socially dead.”1 In cultures like our own, the very fact of facial difference is sufficient to designate patients as on the verge of social death, directly influencing clinical decision-making. In extreme cases with little chance of aesthetic improvement or restoration of function through conventional reconstruction, caregivers may withdraw life-saving treatment based on the imagined range of experiences available to their loved one. Consequently, the promise of aesthetic and functional intervention to normalize the faces of the disfigured can be mutually constitutive with life itself.

OUR EXPERIENCE

To demonstrate the need for recognizing social death in medical decision-making, we include 2 stories of our own patients who underwent face transplant where, if not for technicalities, the acute condition of facelessness would have resulted in biological death. While each case received widespread coverage in medical journals and public media, the difficult conversation about withdrawing care taking place between medical practitioners and health care proxies was rarely included in the literature. Surgical and medical histories are published elsewhere.9,10

The first case is of a 59-year-old male who presented in critical condition with severe facial injuries after falling into high-voltage power lines. The incident resulted in a complex bony and soft-tissue defect of the midface with doubts that the patient would be able to chew solid food, produce intelligible speech, or breathe independently (Fig. 1A). As face transplantation was still a highly experimental procedure, the medical team proposed withdrawing care, reasoning that “no one should have to live with damage that severe.” However, the protracted search for an appropriate medical decision-maker allowed the patient to achieve cardiopulmonary stability, making him ineligible for discontinuation of care. After failing conventional reconstructive treatment, partial fVCA was considered the only option for restoring facial function and enabling social reintegration (Fig. 1B). In 2009, a complex graft including bony and soft tissues resulted in 65% recovered motor function, near-normal sensory function, and total oral competence enabling him to eat, speak, and breath independently (Fig. 1C). Posttransplant, he socially reintegrated, welcomed 2 new grandchildren into the world, attended public sporting events, and walked his daughter down the aisle before his death in 2019.

FIGURE 1:

A–C, Although published photographs of recipients who underwent face transplant often include a picture post conventional reconstruction and post transplant, few display images of facial disfigurement in patients in critical condition whose survival depends on whether their lives are deemed worth living. The images correspond to the case of a 59-year-old male immediately after electrocution by high-voltage wires (A), after conventional reconstructive surgeries (B), and post partial face transplantation (C). D–F, These images correspond to the second case described in the text of a 45-year-old female immediately upon admission for chemical burn (D), after extensive skin grafting (E), and post first full face transplantation (F).

The second case is of a 45-year-old female whose former husband attacked her with caustic lye resulting in 80% total body surface area burns with severe facial deformity (Fig. 1D). After the initial injury, the patient was in critical condition and intubated in the intensive care unit. Understanding that the patient would likely lose her ability to speak, make facial expressions, close her mouth, or breathe unaided, a close friend and legal representative expressed that “she would not want to live a life like that.” Although originally leaning toward withdrawing care, the representative ultimately chose to continue life-saving treatment because she was unwilling to take responsibility for ending her friend’s life. After conventional reconstruction with autologous skin grafts did not restore function or provide sufficient aesthetic improvement (Fig. 1E), in 2013, she elected to undergo full soft-tissue face transplantation (Fig. 1F). Posttransplant, she recovered complete sensory function and ~50% motor function enabling her to eat, breath, close her mouth, make facial expressions, and achieve the partial return of speech. In the intervening years, despite the need for retransplantation in 2020, the patient socially reintegrated with friends and family, lives independently, and recently opened her own business.

If not for difficulty finding a health care proxy or the decision not to play God, both patients deemed socially dead by their medical team and caregivers would have suffered biological death. In each case, access to surgical interventions for achieving improved functional outcomes could reasonably have changed decisions surrounding the withdrawal of care.

CONCLUSIONS

The concept of social death has the potential to fundamentally reframe the ways in which the biomedical community approaches ethical decision-making and resource allocation around severe disfigurement. While it is beyond the scope of this piece to offer a solution, taking seriously the pervasive stigma against facial difference by considering both upstream and downstream effects potentially contributing to biological death allows the health care community to recognize the blindspots in our current system. A more equitable approach to resource allocation would require extending QoL evaluations beyond the pool of stable patients with facial disfigurement to include the broader population of individuals whose injuries qualified them as potential candidates for face transplant but whose caregivers and medical teams chose to discontinue care. Access to allotransplantation is a clinically and ethically relevant factor in the management of patients with critical facial injuries and their exclusion from the fVCA literature obscures the broader implications of facelessness.

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