Where's the Pro Choice Movement on Elective Amputations?

Dateline 8/25/00

If being pro-choice is about letting people do what they want with their bodies, where's the outrage over people being denied elective amputations?

You're probably saying, "What?! Who in their right mind would want to have a perfectly healthy limb amputated?" The answer brings up a bizarre and little known controversy: how to deal with apotemnophilia -- the overwhelming desire to amputate a perfectly healthy limb.

The most common scenario involving amputation of a healthy limb is a psychotic patient who is convinced that the offending limb or organ is evil or otherwise troublesome. During the psychotic episode, the person may lop off his or her own limb, or remove eyes or genital organs. Once the psychosis is under control, the person will regret the loss of the limb or organ.

There is another situation, however, that's even more rare. That is the person who seems otherwise normal but who wants to have an otherwise perfectly healthy limb removed.

Some researchers estimate that about 200 people worldwide suffer from apotemnophilia, which they consider to be a very specific form of Body Dysmorphic Disorder. Patients with Body Dysmorphic Disorder obsess about their bodies, which they consider grotesque or abnormal even though there is nothing abnormal about them. Other researchers don't think apotemnophilia is a form of Body Dysmorphic Disorder because amputating the limb tends to satisfy the patient with apotemnophilia, but cosmetic surgery does not relieve the anxiety and obsession associated with Body Dysmorphic Disorder.

Other researchers consider apotemnophilia to be part of a group of disorders they call Factitious Disability Disorder (more commonly known as Munchausen syndrome). In these disorders, patients feel a compulsion to be perceived as sick or debilitated, and will often undergo risky and/or dangerous procedures. These patients do not think that they are ill; they simply crave the type of attention gained by the role of a sickly or debilitated person and fake the symptoms of illness or disability.

Yet other researchers consider apotemnophilia to be a form of paraphilia -- bizarre sexual desires or behaviors. Others simply categorize self-induced amputation in with other forms of self-injury, such as plucking out one's eyes, burning with cigarettes, and so forth. There are multiple theories about the causes of self-injury, and it is likely that each theory is correct as it applies to certain types of self-injury.

The sensation of a limb as being alien, or foreign to the body, has been described by Dr. Oliver Sacks. Sacks experienced his own leg as alien after an injury, and described his experiences in A Leg to Stand On. Sacks was also called upon to consult on a patient who had thrown himself out of bed attempting to get rid of what he perceived as a grotesque false leg. Although the leg appeared normal, the patient perceived it as alien and did not know where his own leg was. This case was described by Sacks in The Man Who Mistook His Wife for a Hat.

Since Sacks, and other patients who perceived their limbs as foreign after an injury, were eventually re-integrated with their limbs, it is probably possible to integrate apotemnophiliac patients with their unwanted limbs. However, some doctors perceive the desire to be rid of the unwanted limb as rational, and will proceed with an amputation.

The urges felt by people with apotemnophilia can be powerful. Some have done self-induced injury or amputation to gain the desired body image. They may shoot themselves in the leg, or lie with the unwanted leg or legs across railroad tracks.

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Reading stories about apotemnophilia, and about the doctors who do these elective amputations, is remarkably similar in many ways to reading about abortion. Elective amputations, like illegal abortions, tend to be done by doctors who have questionable practices or who have lost their license. An LA Weekly story about John Ronald Brown, who was charged with murder after an elective amputation patient died, sounds like a story about a criminal abortionist. The biggest difference is that Brown did not, according to reports, do abortions. His strange practice was limited to altering people's bodies at their request.

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At the present, mainstream medicine rejects elective amputations, just a it rejected (and to some degree, continues to reject) elective abortions.

As is the case with abortion, there are some do-it-yourselfer wannabes:

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As is the case with abortion, there does not seem to be a simple explanation for apotemnophilia. Some view it as personal expression, or the right to do what they want with their bodies.

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Elective amputation -- whether do-it-yourself, or arranged by a doctor -- is a confusing miasma. When does body modification become mutilation? When is body modification a healthy expression, and when is it a sign of pathology?

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Again, we can see parallels between elective amputations and elective abortions. A reputable physician will try to avoid amputation, and would prefer to save the limb. A reputable doctor isn't going to simply lop off a limb because the patient requests it. A conscientious doctor will recognize the request for amputation to be a sign that something is wrong, and will seek to get to the underlying cause of the patient's trouble. Likewise, a conscientious doctor isn't going to go about doing abortions without compelling medical reasons.

Within the underground of wannabes, it's considered perfectly normal and acceptable to want to amputate a healthy limb. This is similar to the situation before abortion was legalized, when there was an underground movement of people who considered abortion to be normal. Rather than address the underlying problem, they treated the symptom.

Now, with a pregnant patient, the problem is self-limiting. The pregnancy will only last nine months. Most women will readily adapt to the pregnancy and begin preparing for the birth of the child. But with somebody suffering from apotemnophilia, you have a long-term problem. The unwanted arm or leg isn't going to just go away. The abortion minded woman may only have been thinking about abortion for a few days or weeks. The patient with apotemnophilia has been obsessing for years. This is a real challenge.

Conscientious physicians will do everything in their power to help the patient with apotemnophilia to get past the desire to have the limb removed. Why is the pregnant patient not entitled to a full spectrum of care? Her situation is not nearly as challenging as dealing with apotemnophilia. Her condition is normal and self-limiting. The physician has only to get her past the panic of early pregnancy, when hormones are out of control and she is operating in a crisis mode. The patient with apotemnophilia is suffering long-term anguish, dragging around a limb he doesn't think belongs to him.

I don't advocate amputation for people with apotemnophilia any more than I'd advocate abortion for a distressed pregnant woman. Each person should be given the care he or she needs. For a distressed pregnant woman, that might be help with bills, help with relationships, or help getting past the panic. For a patient with apotemnophilia, that might be a neurological consultation or a psychiatric work-up. Neither the pregnant woman nor the apotemnophilic person shoud be abandoned to pathological distress.

So! Where do the prochoice stand? Is the right to one's body absolute? Does the right to control one's body supersede the right to bodily integrity? Does it supersede the right to avoid harm? Does it trump all other cards? Or does it only trump the life of the fetus?