To Face it or not

The transplant surgeons are still trying to read the fine lines

The world’s first total face transplant is being planned next year at the Royal Free Hospital in London amidst raging ethical debates. One of the major concerns of the doctors is how the first patient will cope with a brand new face. Won’t the high risks of a graft failure and a life-long regime of immunosuppressant drugs weigh heavy on him? Subhra Priyadarshini gets under the skin to read the fine lines of medical psychology.

It wasn’t with much difficulty that I accessed Dr Alex Clarke, the chief psychologist of the team planning the world’s first total face transplant at the Royal Free Hospital in London. She is the woman trying to assess every single issue of the mind that could bother the first recipient of such a transplant.

Clarke has been subjected to over 200 media interviews in a month since her team announced its medical history-making venture in October. It has left her with a packed diary and scant time for patients, whom she was busy attending to at the plastic and reconstructive surgery department of the hospital.

“The issue of a total face transplant has evoked tremendous interest, not simply in the medical community but among people who think they might qualify to get a transplant. We have to tell hundreds of callers everyday that this is not just a cosmetic affair…only severely deformed cases can be considered for a transplant,” she said at the outset. “Plastic surgery, you see, has a magic, mythical public perception.”

She and Dr Peter Butler, the chief plastic surgeon of the project, have begun looking for the first four patients. “All sorts of people call up and put queries on our website. Some of them have severe injuries. Some have appearance related concerns that are not serious enough.”

Ask her a typically journalistic question on when and how long will it take before the world sees the first fully transplanted face, and Clarke says, “The programme has just begun to take shape. It’s possible that we never find a patient. It is possible but rather unlikely that there is nobody to benefit from this. I would hope that over the next year, we certainly do at least one case.” And that provides the team time enough to find and prepare the recipient for one of the most difficult cases in surgery.

Difficult path

Clarke says they know it’s not going to be a bed of roses. “We are prepared for glitches. Someone might be willing and by the end of the preparatory process might just say ‘no’. It could be very frustrating. But I do think within the next year, we will get started, provided we find the donor first.”

The announcement last October raised the expected questions on ethics. The Royal College of Surgeons soon came out with a working party report urging caution. It laid out 15 minimal standards that the face transplant team must meet before even thinking of getting started.

Prof Sir Peter Morris, chairman of the working party, says,” The greatest risk is the rejection of the new face. There’s a 10 per cent risk of acute rejection within two or three months and up to 50 per cent chance of chronic rejection later. Skin is top of the league when it comes to tissue or organ rejection.”

Then there is the critical threat of being on a lifetime of immunosuppressant drugs or steroids to prevent rejection and failure of the grafted organ or tissue. This therapy has well known side effects – hypertension, renal toxicity, diabetes, viral infections and cancer -- conditions that shorten life.

Working party member Nichola Rumsey also raised concern that the recipient might end up getting a ‘mask-like’ face whereas humans have to make minute facial changes to express emotions. “And what happens in case of a rejection where the patient will be left with a raw face and has to undergo conventional reconstruction?” she asked.

Changing Faces, a charity that provides aid for people with disfigurement, has been extremely vocal about the issue. “It is the responsibility of the research ethics committee to maintain the highest ethical standards,” says James Patridge, CEO of the charity, who was himself severly disfigured in a car fire as an 18-year-old.

Changing Faces, in fact was the one which had called on the Royal College of Surgeons in March 2003 to create a moratorium on media coverage when the press was trying to identify the possible recipient of the world’s first face transplant.

Closely watched

Peter A Clark of Pennsylvania’s Saint Joseph’s University is closely watching another proposal for a face transplant submitted in May 2004 to the University of Louisville Medical Center, Kentucky.

“Even thought the microsurgical skills are well established, face transplant is more than a matter of technical achievement. The psychological impact on recipients and their families as also the long-term risks of a lifetime of immunosuppressant drugs must be considered. Ethical analysis shows that more time is needed to perfect the surgery so that the rejection rate can be lowered. And the patient’s immune system can be taught to permanently tolerate the transplanted face,” he says.

Clark feels that permitting this surgery now, when there are so many unknowns, would be medically irresponsible and ethically objectionable.

Dr Alex Clarke, who worked for Changing Faces earlier, says her team is undeterred by such presumptions. “We meet all the 15 standards (see box) set out by the Royal College. In fact, we exceed them in some. We don’t anticipate any problems with that. We don’t actually start taking people through an assessment process unless absolutely sure that we’ve dotted all the ‘i’s and crossed all the ‘t’s.”

And they have a Plan B in case of a graft failure. “Reconstructive surgeons always work in terms of Plan A, Plan B, Plan C. Those who are criticizing us just don’t understand how plastic surgeons work.”

To back this up, Clarke, Butler and Simon Brill co-authored a paper with David Veale of the Institute of Psychiatry at London’s Kings College in the March issue of the journal Body Image discussing in detail the psychological management of facial transplant. “We have a robust plan ready….and we are not taking it lightly at all.”

As a clinical psychologist, Clarke set out with the public engagement exercises to begin with. “The first question to answer was whether people are willing to donate facial tissue to somebody in their family. Another early concern was the idea of compromised identity.” 

The team found that it was unlikely that the identity of the recipient would be compromised in a way people perceived it to be. “They were taking the ‘face-off’ image from the film and imagining that there would be a direct swap of faces.”

Face swaps

To allay such fears, Clarke and Butler produced some computer generated images of their own faces and swapped them. And what they got was a third face. “When the French did the transplant, we made those images available…it was very clear at the outset that the new face would be somewhere in between those of the donor and the recipient. That was a real advance,” Clarke says.

The team then needed to think about the candidates for surgery. “Paradoxically, people who are very severely disfigured and so very distressed may not be robust enough to actually manage the demands of the surgery. So we have to focus on people who have clear functional problems like eyelids that don’t close or missing features. The idea is not to look at solutions for just facial scarring but for facial injury and manageably good mental health.”

Dr Alex Clarke

Having better understood the science behind the phenomenon after the French transplant, some donors are now pledging facial skin for transplant purposes after their death. This, like other organ donations, could be difficult, says the Royal College in its report. “Family members may refuse to approve of the removal of facial skin, despite legally valid advance directive by the deceased. It is advisable to obtain a written consent from the relative in conformity with the Human Tissue Act (2004),” it says.

Clarke says all necessary information about how much facial tissue will be removed from the donor, what the donor (then dead) and the recipient would look like after transplant, the procedure and the risks of failure to the recipient will be communicated to the donor’s family much before. “We will also prepare them psychologically to face the unwelcome publicity that might accompany their consent to donorship,” she says.

Over the last decade when Clarke and Butler were planning the procedure, four other teams in France and America were also considering the idea of a full face transplant. Earlier this year, a French team did a partial face transplant on Isabelle Dinoire, who was severly mauled by her dog.  Does it mean there is some kind of competition to be the world’s first?

“Butler has been working on the tolerance models and laboratory-based work for over 14 years. Certainly we are not at the stage where we would rush it all to jeopardise the hard work. The French helped us enormously by carrying out the partial face transplant. This has moved our programme along. In fact, I can almost guarantee that the Americans will do the first full face transplant ahead of us. We are not in a race. We just want to do it well.”

Clarke says some of the work that the British team has done will help all the others. ”We have been very transparent and have published all the work so that the debate is moved forward and people benefit from the evidence.”

The immediate concerns, however, are identifying the first patient and going through the much-brainstormed preparatory drill. “The four patients will be taken one after the other.
Each will inform the next. Unless we get the first one over the acute stage, we won’t think of the next one. There are so many levels of matching involved including basic skin tone matching,” Clarke says.

The recipients will be taken through the process and then followed-up very closely for the rest of their natural lives to monitor the outcome. “We are planning to set up a unit that does this all the time and publishes the findings. So this is as much a research programme as a clinical advance,” she contends.