Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert's commentary.
Last week, you voted on whether or not you would amputate a healthy patient's foot at her request because she is convinced it's not really hers. Here are the results:
Yes: 8%
No: 92%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt from his book, :
Body identity integrity disorder (BIID) remains one of the most puzzling -- and for many people, unsettling -- diagnoses in modern medicine. Patients describe experiencing xenomelia, or the sense that a part of their body is foreign. For some, there is a connection to a related condition, apotemnophilia, in which the patient often finds the image of himself as an amputee sexually gratifying, but this link is far from universal.
Usually, feelings that a limb is foreign begins at an early age. One theory posits that the phenomenon is entirely neurological and reflects an error in neural circuitry that prevents the brain from registering the particular body part as "self." Critics of this hypothesis invoke a psychiatric basis for the condition -- possibly the result of early childhood trauma. Some psychiatrists have suggested a connection to body dysmorphic disorder, an anxiety disorder of distorted body image, but most BIID patients strongly reject this theory. Patients seeking elective amputations frequently draw direct parallels to individuals who seek gender-reassignment surgery in order to conform their bodies to their underlying gender identities. Whatever its cause, individuals with BIID suffer considerably.
Instances of patients seeking elective limb amputation date back at least as far as 1785. In 2012, Guardian columnist Mo Costandi reported finding a case from a medical textbook by French physician Jean-Joseph Sue of a man "who fell in love with a one-legged woman, and wanted to become an amputee himself so that he could win her heart." According to the case history, the man forced a surgeon to perform the operation at gunpoint. The first modern instance was reported by noted sexologist John Money in 1977. Several hundred other cases have since been documented. How to handle these patients remains the subject of considerable controversy.
Doctors are generally trained to follow the principle of non-malfeasance or "do no harm"; the prospect of amputating a healthy limb may strike them as anathema. Yet BIID patients can and often do risk their own lives -- and occasionally those of others -- to achieve their ends when their pleas are rejected by physicians. For instance, sufferers have reportedly placed affected limbs on railroad tracks to achieve amputation. In the late 1990s, a Scottish surgeon named Robert Smith performed elective limb amputation on two patients before his country's National Health Service prohibited the procedure. Chloe Jennings-White, an American BIID patient who did not wish to feel her legs, reportedly found a surgeon willing to sever her femoral and sciatic nerves, but could not yet afford the $25,000+ price tag.
In our quasi-hypothetical case, in which BIID patient "Margaret" approached "Dr. McCoy" to perform an amputation, one might ask who will support Margaret in her new condition. Will she be eligible for government disability payments? And even if she is working now, what about in the future?
One might also consider the possibility that neurologists or psychologists will develop a "cure" for BIID that allows patients to reintegrate their "foreign" limbs into their senses of self. Such a cure would arrive too late, however, for those who have already sacrificed arms or legs. In offering McCoy guidance, one must balance that future possibility against Margaret's current suffering.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.
And check out some of our past Ethics Consult cases: