On November 9th, 2005, a 37 year old man named David Llewellyn walked into Heshworth General hospital in Vancouver Island and sawed off his left leg in the hospital waiting room. It was all over the news. I remember that the Huffington post labelled him as ‘deranged,’ and ‘suffering from a psychotic episode,’ but the reality proved to be a lot more complex than that.
Several eye witnesses reported that Llewellyn walked into the main waiting room of the hospital at approximately 9.05am and sat quietly amongst the other patients. Mr Greg Freying, who had been sitting across from Llewellyn at the time, reported that Llewellyn was quite ‘calm’ and ‘unemotional’ as he casually rolled up the left leg of his trousers and began the self amputation using a wire saw. According to Freying, it took several minutes for hospital staff and surrounding patients to catch on to what was happening, an alarmed mother who had been sitting beside Llewellyn with her two children began to scream and the waiting room erupted in panic. Several members of hospital staff attempted to restrain Llewellyn while the police were called. He was eventually subdued but not before irreversible damage was done to the mutilated leg- which doctors confirmed had been completely healthy and functional before Llewellyn’s actions.
Llewellyn was healthy and active – the kind of man with no serious physical or mental health problems. He was married with two children and worked as a pharmacist in a clinic too far from the hospital itself. That morning, he had stolen several vials of Novocaine (a local anaesthetic) from his place of work and had injected himself before entering the hospital. Nothing could be done to repair the severe damage done to his left leg and despite the efforts of a skilled team of surgeons it had to be surgically amputated. According to his Llewellyn’s wife, he had never suffered any mobility problems and both his legs had been completely healthy before that day.
After his surgery, Llewellyn apologized for the “scene he had caused” and declared that he would not have had to revert to such ‘drastic’ measures if the surgeons had agreed to perform the elective amputation he had requested 3 months earlier.
David Llewellyn never existed and neither does “Heshworth General Hospital.” However, before you roll your eyes, you should know that this particular tale is not as far from reality is you might think. In fact, it is simply a morbid retelling of cases which have indeed occurred in real life. For example, in 2009 when an Australian father, David Openshaw, submerged his leg in ice for 6 hours so that it would necrotize and have to be surgically amputated (as it indeed was). Or in 2001 when George Boyer blasted a hole in his left knee and forced doctors to amputate his leg, rather than repair it, by exercising his right to elect his own treatment.
Xenomelia (formerly known as BIID) is neurological disorder characterized by a severe and obsessive desire for the amputation of one’s own limbs. It comes from the Greek terms Xeno meaning “foreign” and Melos meaning “limb.” The term was coined by Dr Paul McGoech, a Scottish neurologist who studied the underlying neurology of Body Integrity Identity Disorder (BIID) and argued that it was not a psychiatric disorder but in fact a neurological illness. His notable functional brain imaging study showed that patients with this condition had little to no activity in the regions of their parietal lobe responsible for registering that their limb was an actual part of their body.
In January 2000, a surgeon made headlines in the UK after performing elective amputation of healthy legs for two separate patients that had contacted him directly. The surgeon, Mr Robert Smith defended his actions by stating:
The Hippocratic oath says first do your patients no harm. But maybe the real harm is to refuse to treat such a patient, leaving him in a state of permanent mental torment when all it would take for him to live a satisfied and happy life would be to amputate.
He noted that there exists no current treatments (medications or psychotherapy) which has been effective in treating patients with Xenomelia. Sufferers are often “perfectly normal, intelligent and healthy people” who live normal lives and have never exhibited any mental health problems. Patients often openly admit to how “insane” they know others might perceive them, and as a result often suffer from severe feelings of isolation and fear due to the taboo-like nature of their feelings. For these patients, the sensation of having a “foreign limb” (most often the left leg) is persistent from birth, and some patients have likened it to “waking up and seeing that you have a tail or an extra finger- It feels wrong and unnatural, like something disgusting crawling on your skin.”
These patients often experience extreme stress and depression due to their symptoms, and those who do manage to undergo amputation of their unwanted limb display startling instantaneous improvement in their overall well being afterwards, often expressing feelings of “complete happiness”after the limb has been removed.
The issue raises serious ethical implications concerning the line between patient autonomy and clinical practice. Though it is clear that “self selected amputation” is the light at the end of the tunnel for many sufferers of this condition, many question the ethics involved in such an idea. Some argue that nothing could ever possibly justify an elective disability, while others have argued that the disability caused by the loss of their limb is a reasonable trade-off given the significant relief and increase to well being it provides to patients. Especially considering that with no alternative treatment or ability to find or afford a willing surgeon, many sufferers can be driven to desperate acts of self mutilation.
Well, what do you say? Can the elective amputation of healthy limbs ever truly be justified? What are we to do when “Do no harm” actually does more harm than good?
An awkward dilemma.