The 'gorilla in the room' Or benefit versus risk: how do we count the costs of face transplants?

In September 2019 Carmen Tarleton, best known as a face transplant recipient, was at the centre of new headlines, as it was reported her transplant was failing. ‘Woman Badly Burned by Abusive Husband' Needs Second Face Transplant’, said the Metro. ‘Her Face Transplant is Failing after Six Years. Now this Patient Awaits an Uncertain Future’, announced the Boston Globe.

Tarleton previously made the headlines back in 2013, when news of her transplant circulated around the world’s media. Since that time there has been a heightened awareness of the incidence of domestic abuse on a global scale, and of the horrifying figures of women killed by intimate partners. Though there needs to be more consideration of the differences between the gendered forms of trauma that often result in face transplants, we know that domestic violence victims often suffer damage to the face, neck and head. The weapons used, however, differ.

In 2007, Tarleton was separated from her husband when he broke into the home she shared with her two daughters, and attacked her with a baseball bat and a bottle of industrial strength lye. He caused burns to 85 per cent of her body and devastating facial damage. In fact, Tarleton’s injuries were so terrible that she was put into a medically-induced coma for three months. Tarleton herself went on to become a nationally recognised advocate for women who had suffered violence at the hands of their partners. Tarleton’s ex-husband died in jail.

Tarleton was already suffering from extreme physical and emotional trauma, then, when she was taken to hospital. There her surgical team undertook multiple skin grafts on her body; some taken from cadavers, and some from her own thighs. Tarleton’s life was saved, but under new terms. She was unable to blink because she had no eyelids. She was unable to smile or breathe through her nose.

Tarleton spent years living in pain and discomfort, adjusting to a new appearance, before Dr. Bohdan Pomahac, who had already had success in the field, got in touch to offer her a face transplant. This was still a largely experimental procedure, for which various protocols were in place to determine whether Tarleton was a good candidate. Her physical and mental health were assessed over a lengthy period, from the strength of her immune system to her social relationships, the question of risk - and this was a risky procedure - was continually balanced against the potential benefits of the procedure. A procedure with unknown long-term or psychological outcomes.

Once approved for a face transplant, Tarleton waited more than a year for an eligible donor. There was and is a shortage of donors in the US, and an even greater shortage of faces. To be eligible, a donor needs to be brain dead and a match for blood group, skin tone, texture, age and sex. The permission of the donor family also needs to be secured.

There are risks here, too, in opening up the field of face transplantation to public scrutiny: how to create a field without raising expectations and criticisms? How to be open about what is involved while generating more donors?

Each step of the preparation and face transplant process is necessarily lengthy and complex. Each step is also a negotiation of risk. Aside from the demands of the surgery, there are risks around the immune-suppressant regime and the possibility of chronic rejection - in which case the transplant would need to be removed immediately. There are also physical and psychological risks that need to be managed by the entire surgical team as well as the patient, the patient and donor family.

Tarleton had undergone 55 separate surgery before her face transplant, and may of her facial functions could not be restored. The strain placed on an individual’s mental and physical wellbeing as a result of such intense and relentless operations must be profound.

Additional risks were created for Tarleton, moreover, by the nature of those surgeries, that included skin grafts and blood transfusions that compromised her immune system. Pomahac believed that there was a 20 per cent chance that a new face would be rejected entirely. In the case of such an event - which Tarleton is now confronting - her face would have to be reconstructed again from tissue taken from her own body, or from the bodies of cadavers. Heavy doses of immunosuppressants are needed to prevent rejection. And those drugs themselves carry medical risks: of multiple illnesses, infections, cancers and kidney failure.

"That’s the gorilla in the room’, Dr Kodi Azari, chief of reconstructive transplantation at UCLA has said: That’s what keeps me up at night. You’re basically taking an otherwise healthy person, and you’re giving them drugs to impair that health."

The question of risk, then, comes up again and again for face transplant candidates. It is not simply a question of balancing the evidence of reconstruction against transplantation in pursuit of quality of life. There are unknown hazards of surgery that is widely recognised as life-enhancing rather than life-saving. Though to some extent that distinction balances on what is considered ‘life’: eating and drinking, kissing and talking, breathing without support - these are all functions that help make humans physically embodied and socially communicative. What are the psychological risks of their absence?

The life expectancy of a face transplant is uncertain. Most estimates say 15 years, but that is based on the lifespan of a kidney. And episodes of rejection are common. Tarleton had several incidences of rejection, when her drug cocktail was tweaked successfully. In August 2019, however, the face transplant started to fail. She reported terrible pain as her skin blistered and swelled. Parts of her face began to die - one nostril, some of her transplanted hair, her eyebrows.

The choice is now a stark one: Tarleton must wait for a replacement face and hope that her existing face survives that long. The alternative will be another reconstruction. And in the meantime, she lives and breathes and laughs and worries and spends time with her friends and family and supports other face transplant recipients and candidates. And the entire surgical team waits along with her. Waiting for a face, of course, means waiting for someone to die. Which is an unsettling, tempered kind of hope.

Traditional risk-benefit ratios play anticipated benefits off against expected risks. But so much of innovative medicine is uncertain. Those risks are heightened by a lack of evidence. And the humanity of those risks needs to be considered.

These are important considerations because face transplants need to be viewed in that wider social and psychological context. Ethical and psychological justifications often play catch-up to medical and surgical innovation, and face transplants are a case in point. In clinical terms, risk in medicine tends to be viewed through a narrow lens: does X produce better medical outcomes than Y? And in this, surgical teams make split second and long-term decisions based on a range of clinical factors. Yet the sociology of risk is complex, especially in relation to medicine and health. The surgical teams I have spoken to understand this clearly; while subjective perceptions are seldom articulated in clinical terms, and there is enormous variability between the characteristics of different teams, individual professionals take decisions that are often intuitive, and based on an emotional understanding of an individual patient.

In the case of face transplants, then, the gorilla in the room is not only predicting health outcomes, but also what considering what risk means personally to surgeons, nurses, physiotherapists, anaesthesiologists and all those involved in face transplant surgery. Understanding the perception of risk on surgical teams, and listening to the range of disparate voices that might exist within that team, is a necessary counterbalance to the perception of ‘risk’ as a clinical monolith.

It is also important to consider what risk means to the psychologists and psychiatrists and ethicists who predict and support and help define ‘recovery’, for healing is not a single state, or even a clearly defined process; it has fits and starts, curves and bends and may lead to sudden decline as swiftly and unexpectedly as it does to recovery.

And what of the family and friends of the recipient and the donor, whose emotional engagement with the process will be complex and long-lasting? Who might worry about identity replacement, or whether there is suffering, or how to engage with the changing, or disappearing face of a loved one? Or the people living with disfigurement who might be considering their eligibility in the future?

On a more pragmatic level - which is relevant for Tarleton’s case, since the newspapers applauded her ‘optimism’ (in ways that are both gendered and layered with the expected behaviours of a face transplant patient), how and when should we frame face transplants as a legitimate and viable solution for severe facial disfigurement? At what point do surgeons, hospitals, nations decide: we are ready? And how do we constitute “success” in psychological, emotional, physical and social terms?

A separate but critical accounting of risk, of course, applies to the institutions and Trusts that are considering face transplants and their reputation amid inevitable economic, national and international impact. Weaving these threads of risk together, and considering what risk might mean for different people, in a range of circumstances, as well as how the concept of ‘risk’ is defined on an emotional and intellectual level, is critical if we wish to have a more systematic, rigorous understanding of face transplants as an innovative form of surgical intervention.

This are the kinds of questions I am exploring in my UKRI Future Leaders Fellowship at the University of York. This interdisciplinary project brings together arts, humanities, social science and science research. My team and I are working with leading surgical teams, ethicists, journalists, historians, writers, artists, psychologists and others to ensure a better understanding of the issues at stake. Please get in touch if you would like to know more.

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NB I have chosen not to illustrate this story with a photograph of Tarleton. The judicious and reflective use of medical photography is something that I have been considering in some detail. There are times when the use of a patient’s image is necessary or rhetorically effective (and these are not always the same thing). So here I am using, instead, a section of a painting by Lucy Burscough, one of my collaborators. Even when vision is lost, as is often the case in face transplant recipients, the eyes remain one of our most commonly used signifiers of humanity and emotion.

https://www.lucysart.co.uk

https://www.lucysart.co.uk