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Dr. Alex Clarke talks to David Brill and Helen Morant about the psychological acceptance of facial transplantation, the importance of the selection process, and why we all have a role to play in helping those with facial disfigurements.
"You can imagine that if someone very unusual walked into this room now, we'd all look as the door opened and do a double-take. The noise volume in the room goes down and that can be devastating. There's a lot to be done in how we treat people." says Dr. Alex Clarke, Clinical Psychologist on the face transplant team at the Royal Free Hospital, London.
Increasingly, facial transplantation may become an option for the severely disfigured. The concept raises some obvious practical questions: how long will the procedure take? Will the transplanted face regain complete function? What will it look like? With so much attention focused on the logistics of the procedure the psychological management is often forgotten. Dr. Clarke's role is to provide the equally important psychological component of the patient selection procedure, and to remain closely involved in their care after the operation.
Hand transplants give us some idea as to how people might respond to a face transplant. "One of the health professionals involved in hand transplants described going into a room and seeing one of the transplant subjects biting his nails. What wonderful evidence that someone has accepted their hands as their own."
Although the first hand transplant was a physical success, the subject later requested that it be removed, raising the issue of psychological rejection. "As I understand it, he disliked the fact that he had a nonfunctioning hand. So you could say that was a failure of selection. I suspect that what he wanted was a hand that he could move and feel, but it didn't fulfill any function as far as he was concerned. So he made a very logical decision actually - it didn't meet his expectations so he didn't want it. There have been 24 hand transplants across the world and only one of them failed, but it's the one everyone mentions."
Self-acceptance of a new appearance is obviously a major step in the successful transplantation of a face, but is likely to be a long process. "Your body image is very robust," explains Dr. Clarke. "You have a well entrenched sense of yourself, and people who've had disfiguring injuries do say that it takes a long time to look in the mirror and recognise yourself. And even after you've geared yourself up to look in the mirror, you can still be caught out by catching yourself in a shop window when you’re not prepared to look. So the fact that somebody with a transplanted face didn’t necessarily recognise themselves straight away wouldn’t worry or surprise me – I would expect that and would prepare somebody accordingly.”
So it is unsurprising that selecting suitable candidates involves a rigorous screening procedure. “We have tried to make the selection process as objective as possible, so we’re using standardised scales that are used for other forms of facial assessment. These ask about social anxiety and social avoidance, for example. So we’d ask you to identify the kind of things that are difficult for you, for example having a very visibly different appearance, and the sorts of situations you avoid”.
“Some people have the idea that you would move from having an identified abnormality to being normal again. But most reconstructive procedures can’t do that. A poor psychological outcome here would be someone who was expecting to look like they looked before, that they could just walk away from the operation, done and dusted, and disappear. That would be the worst outcome from my point of view – somebody who hasn’t realised that they’re moving into a career as someone with a transplanted face. They'll need to keep in very careful and close contact with medical professionals for the rest of their life."
Facial transplantation is a drastic procedure, and Dr. Clarke stresses that she would only consider it for herself under the most severe circumstances. "If I had panfacial burns which meant that I'd got no nose, no eyelids, my sight was threatened, I couldn't eat properly because I hadn't got any lips and I had lots of tight scarring and restricting movement of the face, then certainly I would consider it as an option. I wouldn't just because I had an unusual appearance and didn't look like everybody else."
Acceptance by others seems to be as important as acceptance by the patient themselves. "The recipient of a hand transplant once spoke of what a difference it made when his little boy first saw him and, pleased to see his daddy with hands again, bent down and kissed them. It was actually the acceptance of other people that made the biggest difference towards that individual."
This example demonstrates the need to prepare not only potential recipients, but also their family and friends. "It's important to have good social support from people who really understand what a long process it is. We need to work with them as well because ultimately it's through them and their interaction with the individual, that people will finally be able to feel that they've got a new face which is theirs."
The reaction of the public also has a significant impact on facially disfigured people. "There's no relationship between the severity of a facial disfigurement and psychological distress. People look at others with very severe facial burns and presume that their life must be dreadful, that they never go out, that kind of thing. Not true at all. I've worked with a lot of people with very severe disfigurements who weren't coping well, but actually changed things around following psychosocial intervention. This takes the form of teaching people how to cope with comments and staring - the sorts of intrusions that come from others. The classic situation that facially disfigured people describe is traveling on the tube and sitting on those seats that face other people. They feel that other people notice them and are fixated on their face, staring at it and exploring it. They have to be able to deal with that and they can learn to do so."
The world's first partial-face transplant, carried out in France last November, was accompanied by intense media coverage and Dr. Clarke believes that this has had a positive impact on public opinion of the procedure. "People's perception of what was being planned was wrong, and their perception of who it was being planned for was wrong. I think that was partly because there were no really good images available, but also because of previous films like Face Off, which contribute to the myths surrounding plastic surgery. But as time has moved on we can provide people with better information about what exactly is planned, and the kind of patients for whom it would be considered. In that regard the French operation is a great example, and the media coverage of that transplant has been really very good. People can see that it would have been a very difficult reconstructive challenge and that maybe a facial transplant was the best solution on offer."
Official permission for the procedure has not yet been granted in the UK, but Dr. Clarke is pleased with progress so far. "At the moment we've got ethical permission to develop a screening process, and that's the first step. We try to be very transparent about what we're doing, so we publish a lot of our work, and we think it's important that people are aware of what is happening and have the chance to debate it. We're certainly not in a race, put it that way, but I couldn't give you a time frame. So far we are moving ahead and we are happy with the rate at which we are doing so."
Evidently, the success of facial transplantation will be measured far beyond the reconnection of blood vessels and nerves. Acceptance of the new face by the recipient, and by those around them, will prove to be important. Perhaps it is only the reactions of other people that justify the need for the procedure at all. Dr. Clarke concludes: "People who look unusual wouldn't have a problem if it weren't for the rest of us.
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