Self-amputation of a healthy hand: a case of body integrity identity disorder
 Original article
The Journal of Hand Surgery: Journal of the British Society for Surgery of the Hand Volume 31, Issue 6, December 2006, Pages 593-595. Available on Science Direct
A case report is presented of self-amputation of a healthy hand. We have reviewed the literature and seek to broaden the scope of understanding of Body Integrity Identity Disorder. This rare condition can constitute a pitfall for the unsuspecting hand surgeon.
"Body Integrity Identity Disorder is a bizarre and extremely rare psychological condition (First, 2005). It is characterised by the patient's longstanding obsessive desire to have an amputation. "
BIID does not solely focus on the desire to have an amputation, but to have some form of impairment. Admitedly, the most often encountered impairment in BIID is the need for an amputation, but quite common is the need for paralysis, and other needs such as blindness or deafness are not unheard of (pun intended).
"These patients have a mismatch between their actual and perceived body schema (Fisher and Smith, 2000) and they feel that being an amputee is a critical aspect of their identity (Berger et al., 2005)."
It seems such a simple statement, "mismatch between actual and perceived body schema", yet, the impact on the BIID sufferer is huge.
"A 51 year-old right handed civil servant arrived by ambulance at the Accident and Emergency department of his local hospital after having amputated his left hand with an axe. He had bound an elastic stocking tightly over his distal forearm as a tourniquet before severing his hand at the level of the proximal carpal row . After amputating his hand he had proceeded to mutilate the severed part with the axe in order to prevent any possibility of replantation."
One has to admire this man's determination and fore-thought, considering that surgeons often obstinate themselves in providing undesired surgeries to re-attach or save unwanted limbs.
"The patient reported obsessive feelings and urges to have his body modified since his pre-adolescent years"
BIID most often begins pre-adolescence, pre-puberty.
"He had undergone an above-knee amputation of his right leg 10 years previously for osteomyelitis of the tibia following a minor injury to the lower leg that had failed to heal as a result of him interfering with the wound. Although delighted with the lower limb amputation, the patient developed an increasingly intense desire over the years to have an upper limb amputation."
This is not typical of BIID. Generally, BIID sufferers have a clear idea of the impairment they require from an early age and of those who have achieved their need, the reports are that they do not wish for more nor different impairment.
"He had self-amputated his right little finger at the level of the proximal interphalangeal joint 8 years ago. He mutilated the little finger of his left hand 2 years previously, resulting in a ray amputation. He went on to self-amputate his left ring finger at the level of the proximal phalanx 3 months before the present episode. All this had been undertaken with full insight, in an attempt to quell his desire to amputate a whole hand."
This is important. While it may appear to the outside world that a subject is wanting more and more impairment, the repeated amputation of fingers were not the "original desire", but rather an attempt to survive with a minimum amount of amputation, rather than going to the desired state, which is often perceived as more disabling.
"When unable to secure an amputation, they can become increasingly anxious, depressed and, even, suicidal. "
The impact of untreated BIID is significant in people's lives, and medical refusal to provide an easy solution to constant and increasing emotional pain is hard to comprehend.
"There is currently no consensus on what causes a person to desire such a disabling intervention (Johnston and Elliott, 2002)."
Nobody knows why we feel this way. It took many decades before GID was better understood, yet they were receiving appropriate treatment (i.e. sex reassignment surgery) long before a scientific explanation was available. What is so abhorent about impairments such as amputations, paralysis, blindness or deafness that the medical community refuses to assist?
"A diagnosis of Body Integrity Identity Disorder is not an implication of psychosis (Berger et al., 2005). In fact, being diagnosed as psychotic excludes one from also being diagnosed with Body Integrity Identity Disorder."
Time and again, this comes up, BIID sufferers are not psychotic nor delusional.
"Body Integrity Identity Disorder is a separate clinical entity from Munchhausen's Syndrome and also those rare cases of patients deliberately, and repeatedly, amputating parts of limbs to gain compensation from several different insurance companies. Munchhausen cases and those seeking compensation set out to deceive their doctors."
Another major difference is that BIID sufferers do not wish for the attention of the medical community (or anyone else in particular for that matter). It is not about attention but about the need to align both "perceived and actual body schema". In fact, the author states this here:
"The patient with Body Integrity Identity Disorder is not seeking attention, nor does he, or she, want the amputation because the limb feels defective. The patient does not pursue secondary gain regarding compensation and is typically, middle class and financially secure. There is no desire for, or enjoyment of, pain."
"There has been debate as to whether surgeons should be permitted to amputate healthy limbs (Bayne and Levy, 2005; Johnston and Elliott, 2002) if patients are experiencing significant distress as a consequence of Body Integrity Identity Disorder and are at risk of potentially lethal attempts at self-amputation."
There is a lot of debate, yet, there is no conclusion. While ethicists and philosophers debate, BIID sufferers continue to suffer.
"Some medical professionals believe that the desire for healthy limb amputation can be treated only by elective amputation. "
We agree with these professionals. And, if you examine the question from the social model of disability's perspective, we, the BIID sufferers, are the expert on our ongoing chronic condition.
"Elective amputations of healthy limbs have been carried out in the UK in 1997 and 1999 (Dyer, 2000; Fisher and Smith, 2000). However, after widespread publicity, such surgery has effectively been banned in the National Health Service."
So the medical profession bent in the face of bad publicity. They made a decision not based on what would be best for the patients, but based on the noise in the tabloids.
"Given the ethically problematic history of surgery for psychiatric conditions, as well as the absence of sound medical data on this condition, surgeons should exercise great caution before complying with a request to amputate a healthy limb."
How many of these ethically problematic surgical solutions for psychiatric problems were requested by the patient though? We suspect that most people did not actually want to be lobotomised, whereas BIID sufferers request the surgery themselves.
As for the absence of sound medical data, it seems hypocritical to us that there is refusal to provide surgery on the basis of "no data", yet, also refuse to conduct studies that could provide the data.
"We dispute the claim that Body Integrity Identity Disorder is a legitimate disease that is curable through amputation. Our case demonstrates that initial satisfaction with losing a limb does not guarantee lifelong relief from this condition as further fixation with amputation of another limb can occur."
The case study does not make mention of the patient's original need. It only stated that this person wanted an amputation. The loss of a leg may not have been what he was needing for his BIID. Studies and anecdotal evidence show that the required impairment is usualy quite specific and nothing short of that will suffice to reach peace of mind. If he needed to be an arm amputee, the original leg amputation would have helped calm things down for a period of time, but would not have provided him with the appropriate body schema.