Bioethics, healthcare policy, and related issues.
When it was announced earlier this week that a French surgical team had performed the first partial face transplant, there was widespread commentary. The face-transplant issue is one that has gotten a lot of attention lately as several teams around the world have announced they are moving toward the procedure. AJOB devoted a special issue to the subject just a couple of months ago.
The problems with face transplants are manifold: the procedure is highly intricate and may have limited success in producing realistic facial muscle control; the risk of rejection raises the horrifying possibility that a patient could sacrifice a damaged facial surface for, literally, no face at all; there is the difficulty of complying with a lifelong regimen of immunosuppressants, with no alternative option in the case of a face transplant (there is no “fallback” position for patients who do not tolerate the drugs); and many have also raised the question of the patient’s psychological reaction to altered facial appearance. (It is understood that the patient will look more like their old self than like the tissue donor, because it is the underlying architecture that contributes most to appearance, not the outer tissue - but there would certainly be changes in appearance that could carry great psychological weight, given the emphasis people place on facial appearance.)
For all these reasons, ethics committees have demanded a “go-slow” approach, and the surgical teams contemplating these procedures have undertaken extensive pre-screening of possible candidates for the first such procedure. Now the news from France is that a partial face transplant has been performed on a patient who was disfigured and disabled by dogbite, but who was only 6 months past the accident itself and on whom no conventional reconstructive surgery had been attempted. This has raised questions whether this case was appropriate for such a radical therapeutic procedure. The New York Times reports:
Surgeons in France have for the first time performed a partial face transplant, a surgeon who led one of the two teams that performed the operation said yesterday.
The recipient of the transplant was a 38-year-old woman who had been severely disfigured in an attack by a dog, said the surgeon, Dr. Jean-Michel Dubernard of Lyon. The operation was carried out in Amiens on Sunday.
In a brief telephone interview, Dr. Dubernard said the two surgical teams had grafted a nose, lips and chin from a donor who had been declared brain dead onto the woman’s face. . . .
Face transplants are among the most disputed frontiers in transplantation science because they are so risky and no one can say what a patient will look like afterward.
Ethics committees in France and England have rejected proposals to perform full face transplants until more research is done. The committees were concerned about the unknown risks of the long-term use of large doses of immunosuppressive drugs for a procedure that does not save lives. The aim of face transplants is to improve the quality of life for patients who have suffered severe injuries from burns, accidents and shootings, for example.
The French committee did approve partial face transplants of the type performed on the woman in Amiens. But the committee cautioned in a report last year that even a partial transplant - the mouth and the nose, for example - was “high-risk experimentation.” . . .
The relatively short interval of about six months between the dog bite and the surgery raised questions among some experts about what, if any, efforts had been made to perform reconstructive surgery first. “The major question is: what were the indications” for the transplant, said Dr. Maria Siemionow, a surgeon at the Cleveland Clinic who plans to perform a full face transplant.
Dr. Laurent Lantieri, a surgeon who was not directly connected with the French woman’s surgery but who has reviewed some of her records, said he was puzzled about why she was put on the list for a face transplant in June or July, so soon after she received her injuries. Dr. Lantieri has published articles about his intention to perform partial face transplants, and was a consultant to the ethics committee in France that approves such procedures.
Face transplants, the committee said, should not be performed on an emergency basis. One reason, it said, is because “the very notion of informed consent is an illusion,” even if all standard techniques have been exhausted, a candidate patient insists on receiving the transplant and a donor is available. “The surgeon cannot make any promises regarding the results of his restorative efforts, which are always dubious,” the committee said. The report continued, “Authentic consent, therefore, will never exist.” . . .
Dr. Lantieri said he had reviewed a summary of the woman’s medical record and examined a photograph of her damaged face. The woman’s type of injury seemed consistent with proposals to do a partial facial transplant, he said. “She had very strong psychological problems,” Dr. Lantieri said. “I said I would not go further if I did not have more examinations by additional psychiatrists to know that she would be able to pursue lifelong immunosuppression therapy.” Dr. Lantieri said he believed that Dr. Dubernard “wanted to be first” to do a face transplant, as he had done a hand transplant.
However, the AP notes today that:
An ethics debate broke out over the world’s first partial face transplant Thursday with one surgeon challenging the decision to operate, while others suggested a bit of jealousy might be at play.
At the same time, several doctors raised concerns about the psychological health of the French woman who received a transplanted nose, lips and chin on Sunday. She had been brutally mauled by a dog in May, and her identity remains unknown.
Dr. Laurent Lantieri, an adviser to the French medical ethics panel, said the surgeons who operated violated the panel’s advice because they failed to try reconstructive surgery first. He said a transplant donor was immediately sought without trying to repair the woman’s face with more conventional surgery.
Lantieri, who had seen a picture of the woman, said, “She had a complete amputation of both lips. The tip of the nose was amputated.” Her new donated facial parts came from a brain-dead woman whose family gave consent.
The panel had previously objected to full face transplants but said partial ones could be considered under strict circumstances, which included first trying normal surgery.
“The ethics committee said this kind of transplant should never be considered as an emergency procedure,” Lantieri said.
However, surgeon Denys Pellerin, of the National Consultative Ethics Committee advised by Lantieri said, “as long as the transplant is not total, it is not unethical.”
And Dr. Jean-Pierre Chavoin, secretary general of the French society of plastic surgery, noted that Lantieri had planned to do a face transplant himself and had been beaten.
Carine Camby, director general of the agency under the French Health Ministry that coordinates organ procurement, said normal reconstructive surgery could not have been used in this case.
“It is precisely because there was no way to restore the functions of this patient by normal plastic surgery that we attempted this transplant,” Camby said. “She could no longer eat normally, she had great difficulty speaking and there is no possibility with plastic surgery today to repair the muscles around the mouth which allow people to articulate when they speak and not spit out food when they eat.”
There are certainly grave questions to be considered about this case, but I suspect, too, that this is something of a manufactured controversy. Outside doctors weighing in on the psychological state of patients they have not met, while challenging the treating physicians’ clinical judgment in light of their own preconceptions about the propriety of the treatments . . . where have we seen that before? Did the Schiavo case teach us nothing? Uninformed second-guessing of patients’ (direct or by-proxy) decisions out of personal prejudice should be a thoroughly discredited procedure by now - but apparently anyone is free to inject their opinion into others’ healthcare decision-making if they masquerade a sufficient degree of outrage.
As for the question of unfavorable outcomes, I do not minimize the difficulties these procedures give rise to. I am puzzled, though, by the French board’s claim that “authentic informed consent will never exist” in these cases. Their reason - that one cannot predict outcomes exactly - is applicable to any risky procedure of any kind, and would tend to the conclusion that true consent can never be given in any case - if one believes that predicting outcomes is a prerequisite to an informed consent to undergo a treatment. But, of course, the risk of the procedure is part of what one consents to when one gives consent, and that risk consists, precisely, in the fact that the possible outcomes are various and unpredictable.
It’s true that there are different types of unpredictability: the kind that arises from not knowing which of several possible outcomes - e.g., cure or death - will result, and the kind that arises from not knowing what some of the various possible outcomes would even be like - e.g., how one’s face will look after a transplant, or how bad a ventilator really feels. The French committee may be pointing to the fact that, in face transplants, we not only do not know whether the transplant will be successful or not, but we do not know what it will be like even if it is successful. But this, again, is a familiar uncertainty - exactly the same problem attends most major decisions, including, for instance, getting married, choosing a career, or having a diseased organ resected. We find that our chosen futures often turn out differently from our hopes and expectations - with experience, we even learn to take that fact into account, and to discount our expectations when weighing alternatives in making major decisions. But nothing about this undercuts our right to consider and accept these risks if we choose, or invalidates the decisions we make about them.
Informed consent is not a matter of choosing between carefully-explained outcomes with perfect certainty, or even of choosing the relative risks we are willing to undergo of differnt, easily-predictable outcomes . It is a matter of choosing between the available alternatives, using as much knowledge as is available about, and relevant to, the decision at hand. Often, such choices focus on the relative risks of outcomes that themselves each harbor some degree of variability, or some range of possible manifestations. But such is the stuff of life: you can choose to vacation in the mountains or at the sea, but you cannot know in advance whether it will snow in the mountains or rain at the seaside. Perhaps you prefer the sea to the mountains, but only if it does not rain - all you can do is work out, and rank-order, the desirability of all the possible outcomes, acknowledging that you have no control over which will come about, but there is no reason you cannot make a rational choice among them even if you cannot control them. You must choose the alternative that seems most likely to please you, taking into account the uncertainties that will remain after you have made the choice. We do this every day. We can do it, if we choose, with more personally-fraught decisions. We cannot eliminate risk from the choices we make, but we can make rational choices about risks. The French committee seems to think that informed consent requires the former, but it has never required more than the latter.
