Why hasn’t it happened yet? Barriers to face transplantation in the UK
There have been 48 face transplants around the world, including two retransplants. As yet, there has been none in the UK. In today’s blog post, our surgical collaborators from Newcastle, David Sainsbury and Sophie Butterworth, talk about the reasons why.
In 2014 our team in Newcastle embarked on the extensive and challenging process of creating a new face transplant facility in the UK. We worked hard to build a competent and informed multidisciplinary team. We created reams of paperwork documenting new policies and protocols, guidance for patients and likewise for donors. And we began extensive training exercises with the surgical, transplant and wider teams involved.
Face transplantation around the world was taking off for patients with complex facial trauma and no option of reconstruction by other means. But for us it failed to begin. In 2002, face transplantation was first discussed as a potential option for facial reconstruction in Boston, USA. Multiple ethical concerns prevented services around the world from offering this novel procedure early on. This was in spite of the fact that the surgical technique required was achievable and already within the skillset of surgeons performing similar facial reconstruction procedures routinely. It has now been 16 years since the first partial face transplant was performed in France. Since then, almost 50 patients worldwide have received one or two face transplants. In this blog we discuss our perceptions of the major barriers to establishing a face transplant service in the UK.
The Patient
The ‘ideal’ patient for face transplantation is a person with a severe facial defect that cannot be reconstructed using conventional surgical techniques. They must be someone who can withstand the physical demands of prolonged surgery and be psychologically robust enough to accept a new face. Of the patients that have received a face transplant to date the reasons documented include:
- Facial trauma from animal attack, severe burns or electrical injury and injury from heavy machinery
- Loss of facial form and function from neurofibromatosis and xeroderma pigmentosum
- Firearm/ballistic injuries, which are very rarely encountered within the UK
The overwhelming majority of patients worldwide come from the firearm/ballistic injuries and severe burn groups. Throughout the development of our face transplant programme, although we did not advertise the service to GP’s or specialist services at the time, we did not identify any patients from our large tertiary centre that we felt would be suitable for the rigorous screening process we had established. We were only ever approached by one centre to discuss a patient felt to be potentially suitable for the procedure.
A couple of potential patients with severe facial burns had been discussed with the team. However, these patients had received multiple blood transfusions and were likely to have become more sensitised to donor antibodies. Consequently, they were felt to have a greater risk of donor face rejection, need for immunosuppression and risk of death. Therefore, they were not felt to be suitable for the first face transplant in the UK.
Research conducted by the Brigham and Women’s Centre in the US found that, of 100 patients screened, 50% self-referred. Only 15% overall were deemed suitable after extensive screening and evaluation. If we infer from this that only 15% of patients referred are potentially suitable, then we have a long way to go to before we are likely to identify a suitable patient. This poses the question whether a service for face transplantation in the UK is really required, when the procedure may only happen once every few years. It also highlights the limited experience and exposure that the team would gain. This is particularly important when there is a general move in all surgical disciplines towards higher volume operating, enabling surgeons to become more competent at a procedure they are performing through regular and deliberate practice.
Financial Barriers to Face Transplantation
The cost of one face transplantation is documented to be anything from $200,000 to $1.5 million in the US. Although not published for many other countries performing face transplant, it was costed in the UK at around £200,000 to £300,000. This is in line with the most complex reconstructive procedures, staff and theatre costs and life-long transplant immunosuppression and monitoring.
In the US, due to the high prevalence of firearm/ballistic injuries, funding appears to mainly be supported by the Department of Defence’s Armed Forces Institute of Regenerative Medicine I (AFIRM I) grant program. This was proposed to treat service members wounded on the battlefield, and some received crowdsourced funding. In our centre, funding was approved at Trust level to treat two patients. Following this a review would have been conducted to refine the costs and try to secure long-term national funding. This local funding was at the discretion of the hospital’s previous Chief Executive and changeover of staff meant funding for this procedure was no longer a priority. If the procedure is deemed important and valuable for patients then central funding should be secured.
Ethical Issues
With any procedure the risk-benefit ratio must be considered. Many comparisons were made to solid organ transplantation in early ethical debates. Face transplant, although considered to be life-changing in a positive way, is unfortunately life-shortening in otherwise healthy individuals due to lifelong immunosuppression. This is because of the inherent risks of fatal cancers, renal impairment, infection and metabolic complications.
Recent publications looking at the long-term outcomes of face transplantation have shown that facial function and social interaction remain good up to nine years of follow-up, even when multiple rejection episodes have occurred. However, the several deaths following face transplant cannot be ignored and relate to failure to comply with immunosuppression, severe infection, complications and suicide.
Quality of life in long-term follow-up studies has been shown to improve in most patients. But this was less so for those with self-inflicted injuries and pre-existing psychiatric comorbidities. Knowing this, will patient selection now change to exclude those with self-inflicted injuries? Burns patients who have received multiple blood transfusions also become more sensitised to donor antibodies than other transplant patients. Therefore, they have a greater risk of rejection, greater need for immunosuppression and increased risk of death related to infection. Knowing the increased risks versus benefits, should these patients still be considered? Most debates in this regard come down to informed consent.
Informed Consent in Face Transplantation
To be able to give informed consent an individual must be able to understand the proposed procedure. They need to be involved in the decision-making process, consider the alternatives to the proposed intervention (which include doing nothing) and be fully aware of the risks of the proposed intervention.
For face transplantation, discussion should include what the intervention involves, what will be required before and after the procedure and what will need to happen long-term. Patients also need to appreciate that a degree of uncertainty exists with this novel procedure and that there are limited options if something were to go wrong. Due to the nature of the patients selected for this procedure, limited alternatives would be available. These include deciding not to proceed, skin grafts or free tissue transfer for reconstruction if donor sites are available and a second face transplant if rejection of facial tissue cannot be treated with medication. Such alternatives may mean that a patient ultimately downgrades their current facial appearance and loses vital facial functions.
Pre-operative screening of patients must be extremely robust and include substantial clinic time over multiple encounters with a clinical psychologist and other members of the MDT (multidisciplinary team). This team must assist with patient understanding, review psychological history, coping mechanisms, expectations, details of the procedure and postoperative care. Additionally, they would discuss risks associated with immunosuppression, including compliance and monitoring for complications, transplant loss and what this could mean in terms of waiting for a further transplant. Including potentially being in a less favorable position than they currently are and their ability to cope with that. Discussing the psychological impact of receiving a face from another person and media attention are also vital to this process. Regular checks of understanding regarding the procedure and post-operative course would need to be regularly discussed in subsequent appointments.
Will there be a UK Face Transplant?
Paradoxically, the most suitable candidate for a face transplant is probably an individual who is psychologically well adjusted to their facial defect and therefore may not gain much from one. In comparison, the psychologically less robust patient, who experiences significant psychosocial disruption due to their facial appearance and function, might in some ways gain more from a face transplant but may be less likely to withstand the innate mental stresses of the procedure. However, the functional aspects of a face transplant must also be considered.
Undoubtedly, we are eminently capable of establishing a fully functional, multidisciplinary face transplant service in the UK. Furthermore, we are technically able to perform the procedure. However, a few rudimentary questions remain. Do we need to? Is there adequate demand? Is it cost effective?
The questions raised here are critical concerns of AboutFace research. For a more detailed historical discussion, which puts the Newcastle team’s experience in a broader UK context, see: F Bound Alberti & V. Hoyle, “A Procedure Without a Problem,” or, The Face Transplant That Didn’t Happen. The Royal Free, the Royal College of Surgeons and the Challenge of Surgical Firsts,’ Medical Humanities, (in press).
Dr Sophie Butterworth
Sophie is a doctor with an interest in cleft lip and palate surgery. She also works part-time as a research associate within the Clinical Effectiveness Unit at the Royal College of Surgeons of England. She was involved with the formation of a multidisciplinary face transplant team in the UK from 2015 onwards.
Mr David Sainsbury
David is a Consultant Cleft and Plastic Surgeon in Newcastle. He established the Cleft Multidisciplinary Collaborative, a multicentre, research group in the UK and is an Honorary Tutor at the Wound Healing Research Unit, Cardiff University. He was involved with the formation of a multidisciplinary face transplant team in the UK from 2015 onwards.