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Friday, December 19, 2008

Socially Necessary Surgery: the debate rages

You may have read the news that a woman in Ohio recently received a nearly complete face transplant. I am sort of surprised that this is so controversial, but it is. Articles like this argue that doctors willing to perform a facial transplant must also offer the possibility of assisted suicide if the transplant fails. Others question the idea of surgery that is not absolutely medically (physically) necessary. There are a host of other questions that remain to be answered: what about the donor, for example?

(Note: I'm going to talk in detail about facial injury and disfigurement, and about the process of organ donation, in this post. I also talk about patients who are burned, and those who attempt suicide via gunshot. If this is too emotional for anyone, I suggest skipping this post. It's not really graphic, but it can certainly be emotional.)

I have worked with many patients who were severely disfigured by surgery, burns and trauma, who are the usually talked-about potential recipients of face transplantation. The idea that this surgery is not medically necessary is a lofty one for those who don't have to live with the consequences of having a devastated face. Take burns, for example. There is a lot of research going on to determine the best ways to prevent disfiguring scarring after burn grafting (especially to the face) and how to treat disfiguring scarring when it does occur. Scars continue to grow months or even years after a graft has healed. Some new specialized laser surgeries do offer some hope to people with horrific hypertrophic scars (like keloids) over their burn wounds, but these people live for years with a face that humans naturally recoil from, even if they have the best of intentions not to. And to lose what was once a normal face to a burn accident or trauma can be so devastating to a patient, they often withdraw from society altogether, unable to take the ongoing trauma of interacting with people.

I've also had many patients who disfigured themselves in attempting suicide. (Side note: gunshot to the head is not a surefire way to commit suicide.) I've had a few patients who blew off their whole face but left their brains competely intact. Imagine being so depressed that you try to commit suicide by putting a gun in your mouth, only to wake up in an ICU, on a ventilator, still depressed and now you have no face. (Aim too low, and you can blow off the top of your spinal cord, leaving you a quadriplegic with an intact brain.) Many people tend to blame these patients for bringing this on themselves. But depression is a disease, and the consequences they face after something like this happens are devastating.

The people who do research on treating facial disfigurement (I think the term deformity refers more to structural problems that tend to be congenital) see facial transplantation as a very viable treatment option to problems that our other surgical techniques just can't solve. The obvious downsides include the following: you have to take high-dose antirejection drugs for the rest of your life, which often cause cancer; the liklihood of a facial transplant being rejected over time is higher than for most solid organs; if the transplant is rejected, there is no second chance, and the patient is left with a face that will probably be worse than what they started with. In short, if it fails, the patient--who already could not bear to live with their original disfigurement--may not wish to live with the consequences.

All of this is, I am certain, covered in extreme, minute detail when the surgeon discusses this option with a patient. Unlike a lot of mainstream journalists opining on this subject, plastic reconstructive surgeons who consider this option for a patient think every day about the consequences of extreme facial disfigurement for their patients. Humans have a strong attachment to faces, and it's not just societal norms that cause people to recoil from disfigured faces--it's a very basic part of human nature. That's not to say that people should not make every attempt to counteract this instinct when interacting with someone who is severely disfigured. But look at the dance that occurs between that patient and one stranger with whom they are interacting: the stranger trying to treat the patient normally, being compassionate but trying not to make the patient feel bad, and the patient feeling the stress of knowing that their face is difficult to look at. And this is with people who are trying not to be cruel--some don't even try. Imagine having to do this dance with every single person you interact with for the rest of your life, and it's easy to see why doctors and patients consider taking all these risks to repair extreme damage to a face.

The donors are another matter. Some of the articles that quote Art Caplan, the bioethicist (whom I've seen on a number of forensics shows before, and who I think is kind of a tool) talk about this new world of organ donation, wondering if families get a choice in having their loved one's face transplanted when they agree to organ donation, or if we need to change the whole process so that people can make sure their loved one doesn't have to have a closed casket when they agree to organ donation. I think this is a bit of silliness that reflects a lack of research into the organ donation process. In my experience with numerous organ donors in several states (at least Washington, Oregon, Arizona and Illinois, the states I have worked with organ donors in), just having "organ donor" on your driver's license doesn't mean that you are obliged to donate your face when you have a devastating accident. (Or any other organ.) The declaration on your driver's license carries no legal weight, and at this point only serves to inform the organ procurement agency (OPA) of your wishes so that they can convey this to your family. Your family makes all of the decisions about organ donation--not your driver's license. This includes specifying what organs are transplanted.

Here's what happens after a patient is determined to be a possible candidate for organ donation. A donation coordinator from the OPA approaches the family and discusses the option of donation. This conversation happens very delicately and focuses on what the family wants and what they think their loved one wanted. If they sound like they want to pursue the option of donation, the coordinator lets the family know what kind of donation appears possible--i.e. full organ donation (heart, lungs, kidneys, liver, pancreas, plus tissues such as bone, tendons, corneas), donation after cardiac death (kidneys and pancreas only, plus tissues), or tissue donation only. The OPAs are very sensitive to the needs of their donor families, and of course to the possibility of being sued by a donor family, so they would never "slip" a facial donation into that process without being extremely clear about it. With all of the OPAs I have worked with, I am confident in saying that at least about those organizations. OPAs are not going to say to a family, "You consented to organ donation, so you don't get any say about what we take." With all the emotional weight that a face has, no one is going to use a donor's face without explicit and detailed consent from the donor's family. I think this is really a non-issue based on what I've seen. There is a choice. The consent process doesn't need to be changed at this early stage.

In all of the articles I have read about this issue, one thing that always comes up is the idea that this surgery isn't really "necessary" for life. This really bothers me. I think bariatric surgery patients can relate to this to a lesser degree. How often have people told us we didn't really "need" our surgery? These are people who haven't had to live the life we lived as morbidly obese people. They don't have to face all the social problems that the MO do. For candidates for facial transplantation, this is much more extreme because they don't also have the systemic health risks of morbid obesity, but their psychological necessity is even greater. The idea that a person's life should be fine as long as their heart is beating and they are able to feed themselves and get around is so simplistic. How can you say that transplanting a kidney is more medically necessary than transplanting a face? (After all, you can live a surprisingly long time on dialysis.) Transplanting solid organs is a fairly uncontroversial topic these days, since people aren't as emotionally attached to a liver or a heart as they are to a face. But I defy any of these journalists who say that this surgery isn't worth risking a patient's life for to tell that to a patient who can't eat or breathe normally, who is missing entire parts of their face and cannot go out in public without being stared at in horror.

I don't know if my readers find this topic as interesting as I do. But again, I think we all can relate to other people determining what is really "necessary" for us. For people who may be wishing that medical science hadn't been able to save their life at all, now that they have to live with the consequences of an otherwise healthy body and a horribly disfigured face, this can be the only hope for a reasonably normal life. The ethical dilemmas are real--I'm skipping entirely the question of offering assisted suicide--but they are best left for the patient and the physician to determine.

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