Face transplantation is a complex issue with many ethical considerations

Changing Faces’ position on Face Transplants

The recent case of Richard Norris, a 39 year-old Australian man who received a face transplant and went on to meet the donor’s sister, has reignited interest in the issue of face transplants.

Having taken an interest over many years, Changing Faces welcomes the debate on this issue which is highly complex not only in terms of the surgery itself, but also in ethical and psychological terms.

Changing Faces continues to support, as it has always done, research in medical science, psycho-social concerns and other subjects to tackle the problems posed by facial and other disfigurement but with the interests of patients and families at the forefront of our minds.

Our awareness-raising and inclusion campaign for ‘face equality’ (like race equality) is essential partly because medical/surgical research has yet to find convincing answers to the social and emotional challenges of scarring, asymmetry, skin conditions, paralysis etc. and how to help everyone affected to live confidently in a looks-obsessed society.

On face transplantation research, our position continues to be:

  • We will support unconditionally any patient (and family) who chooses to undergo a face transplant, and any UK face transplant team that meets the Royal College of Surgeons’ 15 preconditions (see below).
  • We retain an independent position from which to judge the balance of risk-benefit in face transplant research and remain cautious about psychological issues.
  • We strongly support the privacy clauses imposed and respected by the media and hope that all patients will be afforded the same – if they wish it.
  • We consider that face transplantation research is still in its relatively early stages and think there is a continuing need to assess the learning internationally and evolve best practice.

Changing Faces is pleased that the process by which face transplantation research is being undertaken in the UK is now informed by authoritative reports from the Royal College of Surgeons of England and wholly supports their preconditions. We are not able to comment on the ethical processes in place in other countries but believe strongly that the Royal College’s criteria are fundamental.

Looking at each of our main concerns in light of present knowledge:

Technical surgical issues

Long term functional or aesthetic reasons: it is clear that face transplantation is being conducted for both functional and aesthetic reasons, both of which are justifiable provided the benefits are judged by the patient to outweigh the risks (eg: to life expectancy).

Conventional surgery: we accept that with conventional reconstructive surgery (with minimal side-effects) it is sometimes impossible to achieve effective functioning and a ‘non-shocking’ aesthetic result – but these are very rare instances. Patients should be fully informed about what can be done conventionally and be able to choose such surgery.

Last resort: face transplantation is not being suggested only when all other conventional treatments have either failed or been discounted. This is acceptable as long as all reconstructive options are offered for consideration by patient and family.

Functionality: it remains unclear from the reports available to Changing Faces how much sensation and mobility is being achieved by a face transplant; the ‘new’ face could still be a barrier to social interaction although probably a lesser one than the status quo ante.

Post-rejection plans (Plan B): a range of options (eg: replacement transplant, conventional surgery) have been described by clinical teams for implementation in the event of transplant failure. Debate continues about the options’ effectiveness.

Immunology

After a (partial) face transplant immunosuppressive drugs are necessary to suppress the patient’s own immune systems and prevent rejection of foreign tissue. Long-term or lifelong immunosuppression increases the risk of developing life-threatening infections, kidney damage, and cancer.

The transplant surgery itself can result in complications such as infections that could damage the transplanted face and require a second transplant or reconstruction with skin grafts. Patients need to be made aware of the risks of long term use of immunosuppressive drugs and this should be an important aspect in their decision to undergo face transplantation.

Progress in research: Changing Faces understands that the current face transplant patients are receiving relatively low doses of immuno-suppressants but that, when they have episodes when the transplant appears to be failing, this dose is raised very greatly. However, it is unclear, to date, whether (a) the risk of transplant failure has changed from the RCS’s estimate (30-50% within 5 years), (b) there are serious side-effects from the drug regime (as has been reported by one hand transplant patient), or (c) the risk of reduced life expectancy (up to 10 years according to the RCS) has been reduced.

Psychological issues

New identity: although we appreciate that the recipient will not look identical to the donor, we continue to argue strongly that face transplant patients should receive long-term psychosocial support to address the fact that the face which the patient will see in the mirror and with which s/he will face the world, will not resemble their old face/identity, and they will know that it was someone else’s identity. This is a fundamentally different change from that experienced by those going through conventional facial reconstruction.

Patient selection: we welcome articles (see the Face Trust website) in which Prof Butler’s and other teams outline their processes and the criteria for patient selection which both stress the importance of identifying a psychologically stable recipient who is assessed as robust enough to cope with the lifelong challenges following the transplant and, unless they choose complete privacy, can handle (along with their family) the ongoing media attention.

Psycho-social adjustment: we welcome the fact that Prof Butler’s co-worker, psychologist Prof Alex Clarke and her colleagues have published papers describing how the Royal Free team aims to support the long-term adjustment of the recipient and their family, and of the donor’s family too (including privacy). We expect similar procedures to be in place in all future UK teams and worldwide.

Informed consent

Full information about all other interventions: we have been repeatedly assured by clinicians that all potential patients who are being considered for face transplants by surgical teams in the UK, USA, France and elsewhere are being provided with full, frank and as far as possible, objective information and a frank assessments of risks and benefits not just of the face transplant procedure but of all alternative treatments including those of a psychosocial nature. No such patients have sought help from Changing Faces’ services as far as we know – which does not mean they have not received high-quality support nor been exposed to positive role-models or the Face Equality campaign.

Who counsels the patient: we are satisfied that any patient of Prof Butler’s team will receive informed advice from the multi-disciplinary team and be able to talk to well-adjusted patients with similar conditions. We hope similar procedures are in place worldwide.

Media representation and coverage

Changing Faces continues to be concerned about the way in which some parts of the British and international media occasionally portray face transplants, as some kind of miracle ‘fix’ for all people with disfigurements.

We will continue to challenge over-simplistic media coverage which
(a) suggests wrongly that people can’t lead happy lives unless their disfigurement is removed
(b) reinforces the stereotypical view that a disfigurement is undesirable and disastrous
(c) suggests that a public attitudes shift on disfigurement is either impossible or unnecessary.

The charity is also concerned by anecdotal reports that the main reason why some potential patients eventually decline a transplant is because they are not prepared to face the media exposure that is likely to follow them and their family for years to come. It is clear to Changing Faces that clinical teams need to add ‘long-term media management’ to the resources needed in their team before a face transplant programme seeks to find its patients. There are many lessons to be learned from how people injured or attacked and then caught up in a media frenzy react. Some like Katie Piper after her acid attack are supported by their clinical team to rise above the media intrusion; but others find the whole experience intimidating and something they wish to avoid at all costs.

Donors and their needs

The interests of donors and their families have rightly received considerable attention since the first face transplant after which the donor family’s life was made difficult by local media and social media speculation.

Changing Faces believes that it is of the utmost importance that donors’ privacy and dignity is upheld to the greatest possible extent.

The question of whether the recipient should ever know or meet the donor’s family is one which should be clarified in the ethical procedures of each transplant programme. What is most important is that the wishes of the donor’s family be uppermost in this. But it might well be sensible to allow for a reappraisal of those wishes after a period of years.

For further information, please contact Henrietta Spalding, Head of Advocacy.