Unwanted Limb(s) – Self Amputation

Body Integrity Identity Disorder (BIID)

Ethics – A Right to Autonomy

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In a world where we are taught to be grateful in regards to having all of our bodily functions, it is hard to comprehend the idea that someone would electively desire to remove a limb.  One morning in 2001, after eighteen years of suffering with Body Integrity Identity Disorder (BIID), George Boyer decided to take matters into his own hands.  Sitting in his backyard, Boyer cocked his gun, aimed and blasted a hole just above his left knee.  He had planned every thing down to the last detail.  However, his cordless phone was out of range, had he not been found by his landlady, Boyer would have bled to death. While in the Emergency Room, Boyer became very combative with the doctors when they decided to restore his knee, demanding that his leg be removed (Ellison, 2009).  By exercising his right to electing his own treatment, the doctors were forced to amputate.

Boyer’s case raises many questions about the ethical issues concerning the medical decision-making process in regards to self-elective amputation.  This blog addresses the issues about the medical approach regarding elective amputation, in the hopes to reduce the drive for self-injuring behavior or even suicide.  Without an established method of treatment for BIID sufferers, performing an amputation on an otherwise healthy limb will continue to be considered an unethical act (Muller, 2009).  However, BIID is not the only disorder that commonly seeks out self-elective surgery.  Those with Body Dysmorphic Disorder (BDD) and Gender Identity Disorder (GID), like BIID, usually result in a desire to change or modify ones body to reduce anxiety (Patrone, 2009).  GID commonly results in sex reassignment surgery, while those with BDD will seek plastic surgery to change a preoccupation with ugliness.  Often these surgeries are preformed regardless of the underlying psychiatric conditions, where little consideration is given to the ethical issues involved.  Unlike GID and BDD surgeries, BIID amputation results in a disability, which is considered unethical in accordance to the Hippocratic oath, “First do no harm” (Ryan, 2008, p. 27).  Yet, it is argued that this disability caused by the loss of a limb is a reasonable therapeutic trade-off, given the significant relief that it provides (First, 2005).  With no safe means to relief suffering, individuals who cannot find or afford a willing surgeon may turn to self-mutilation, causing far more damage than intended.  

While it is clear that BIID, GID, and BDD share a condition where obsessive desires can lead to suicide, it is not clear that amputation of a limb conflicts with the goals of medicine.  In an article by Tim Bayne and Neil Levy (2005) on medical ethics, they stated “if the desire for amputation is long-standing, the patient is not psychotic, and he is well aware of the risks and consequences, surgery is ethically permissible because it will prevent many BIID patients from injuring or killing themselves.” (p. 39)  Furthermore, surgeons and the medical industry have established criterions for elective removal of healthy body parts (i.e., cosmetic surgery, living-donor organ transplantation, and sex reassignment surgery) (Patrone, 2008).  It has also been suggested that Body Integrity Identity Disorder could be considered an extreme body modification, a tool used to exercise the right of control over one’s body (Muller, 2009), but this concept appears more benign than BIID really is.

Concerning the principle of autonomy, Muller states that the “patients have the right to choose between different medical therapy options regarding their different chances and risks as well as their personal situation and individual values.” (p. 40)  In other words, should the sufferer choose, elective amputation would be a suitable method of therapy.  According to the medical industry, when diagnosis with a psychiatric disorder the lost of autonomy occurs, because the concern becomes an ethical issue between one’s freedom of choose or obsessive desires (Ryan, 2009).  In term of analytical thinking, this argument directly addresses to the right to modify one’s body as desired, putting elective amputation in the gamut as liposuction, nose and breast augmentation.  It is important to note, BIID amputees do not wish to be identified as being disabled while using prosthetics to hide the amputation area.  They want the impairment, however they do not socially identify as disabled, nor are they looking to inflict additional cost to society (Bayne & Levy, 2005).

Throughout history, humans have gone to great lengths to alter their appearance at the risk or self-harm and even death.  Augmenting one’s appearance in many cultures was and is still heal in high regard.  Yet until medical professional are able to conduct further research, the public and medical acceptance of elective amputation will remain misunderstood, and sufferers will be left with very little methods for dealing with their anxiety and impulsiveness.  Currently, BIID sufferers are left with no outlet other than the Internet to find effective ways to self amputate, with the ‘dry ice method’ being number one means of treatment.  The disorder is being considered for the DSM-V, which should widen the understanding and acceptance of BIID. 

Reference:

Bayne, T., Levy, N. (2005). Amputees by choice: Body integrity identity disorder and the ethics of amputation. Journal of Applied Philosophy, 1(22).

Ellison, J (2009). Cutting desire. Newsweek (http://www.thedailybeat.com/newsweek/2008/05/08  /cutting-desire.html#sthash.gUAsfCCk.dpuf). 2009 May 05.

First MB (2005). Desire for Amputation of a Limb: Paraphilia, psychosis, or a new type of identity disorder. Psychological medicine, 2005, 35:919-928. PMID 15997612.

Khalil, B. R., Richa, S. (2012).  Apotemnophilia or body integrity identity disorder: A case report review.  The International Journal of Lower Extremity Wounds, 1-7.

Muller, S. (2009).  Body integrity identity disorder (biid) – is the amputation of healthy limbs ethically justified?. American Journal of Bioethics, 9(1): 36-43, 2009. doi: 10/1080/15265160802588194.

Patrone, D. (2009).  Disfigured anatomies and imperfect analogies: Body integrity identity disorder and the supposed right to self-demanded amputation of healthy body part. Journal of Medical Ethics, 35(9), 541-545. 2009, May 15.

 

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Treatment Approach for BIID

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There is currently no known treatment for Body Integrity Identity Disorder (BIID).  Unlike most, this disorder goes medically unrecognized by many doctors and psychotherapists, thus there is no presently known protocol for treatment.  In a study conducted in 2012, only forty percent of health care professionals were able to correctly identify and diagnose BIID (Khalil & Richa, 2012).  Consequently, the medical community often handles those with BIID inappropriately.  Therefore, sufferers often go untreated, and in addition, sufferers fear hospitalization due to the ethical code of conduct in regards to reporting a self-harming desire (APA.org, 2010).  Due to this institutional inaction, treatment becomes self-administered, while suffering in silence, those with BIID self seek alternative ways to cope with their distress.   This self-treatment (i.e., self-medication) forms a maladaptive coping mechanism, that seeks to lessen the symptoms of depression and anxiety, which is caused by the shame that is experienced when a desire for self-amputation is greatly stigmatized by others (First, 2005).

There have been no systematic studies concerning medication when treating Body Integrity Identity Disorder and its underlying symptoms.  However, a number of medications have been tried, which include those used in the treatment for depression, Obsessive-Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), and psychosis (BIID.org, 2012).   With similarities between BIID and Obsessive-Compulsive Disorder (i.e., repetitive and intrusive thoughts), treatment with medication are used to alleviate the symptoms of OCD, which are namely selective serotonin reuptake inhibitors (such as Prozac, Paxil, Zoloft, Luvox, Celexa, and Lexapro) would make sense, but the effectiveness of such medications to treat BIID is unknown (Jenike, 2012).   In First’s (2005) survey of fifty-two patients with a desire for amputation, sixteen reported having taken one of these medications, however none reported any decrease in their desire for amputation.  According to Jenike (2012) the combination of medication in conjunction with Cognitive Behavioral Therapy (CBT), which involves retraining thought patterns and routines, can reduce the obsessive-compulsive component and diminish the need for self-amputation.

Other medications considered helpful, include second generation antipsychotics, such as Risperidal, Seroquel, and Abilify (Blom, et al, 2012).  These medications have been known to be helpful with symptoms of OCD and Major Depressive Disorder.   Although individuals with BIID are not psychotic, these medications appear to be helpful in treating a number of conditions (i.e., Bipolar Disorder, treatment-resistant depression, and Schizophrenia), which can reduce BIID symptoms such as agitation, anxiety, and aggression (First, 2005).  However, there is only one reported case, where a sufferer took Risperidal and showed significant improvements in the desire for amputation (Khalil & Richa, 2012).  It is also worth noting, that positive correlation between BIID and ADHD is hypothesized (Berger, Lehrmann, Larson, Alverno, Tsao, 2005), because of the impulsivity that is involved with self-amputation.  This suggests that treating the ADHD symptoms would results in a secondary improvement in the BIID sufferer.  However, in research conducted by First, he found no known relationship between ADHD and BIID (First, 2005).

Such medications can be beneficial in the changes of mood and improve the quality of life for a BIID sufferer.  Conversely, those who have had psychotherapy and or have used medication(s) reported no change in the desire for amputation (Khalil et al., 2012).  A common form of treatment used by psychotherapists is referred to as “pretend-therapy”.  BIID sufferers are encouraged to function as if the limb was no longer there, this is used as outlet to release frustrations and reduce anxiety.  The idea behind this method of treatment is to offer an alternative to amputation, by having the sufferer experience the disability as near as possible (Khalil et al., 2012).  This type of exposure therapy is used to give insight into the anticipated change, in hope that a new perspective regarding a concept of wholeness will take place.  Nonetheless, most sufferers reported that pretending only leads to further frustration, because it simply reinforced the desire and anxiety for limb removal (Blom, et al, 2012).   Blom’s report revealed that only those who had amputation reported a feeling of wholeness without regret.

While the medical community’s awareness of this disorder is not common place, a greater understanding and dialogue is needed so effective treatment can be developed to prevent these sufferers from inflicting self-harm at the risk of death.  Next to surgery, there is no effective management strategy at present that acknowledges and respects the desires of BIID sufferers. 

References:

APA.org, (2013). Ethical principles of psychologists and code of conduct including 2010 amendments.  American Psychological Associations.  Available: http://www.apa.org/ethics/code/index.aspx. Accessed 2014, April 10.

Berger, B. D.,  Lehrmann, J. A., Larson, G., Alverno, L., Tsao, C. (2005).  Nonpsychotic, nonparaphilic, self-amputation and the internet.  Comprehensive psychiatry 46(5). 350-383. doi:10/016/j.comppsych.2004.12.0003.

BIID.org (2012). Available: http://biid-info.org/Main_Page. Accessed 2014, February 12.

Blom, R. M., Denys, D., Hennekam, R. C., (2012).  Body integrity identity disorder.  PloS One, 7(4): e34702. doi:10.1371/journal.pone.00034702.

First MB (2005). Desire for Amputation of a Limb: Paraphilia, psychosis, or a new type of identity disorder. Psychological medicine, 2005, 35:919-928. PMID 15997612

Khalil, B. R., Richa, S. (2012).  Apotemnophilia or body integrity identity disorder: A case report review.  The International Journal of Lower Extremity Wounds, 1-7.

Jenike, M., (2012).  Medication for obsessive compulsive disorder. International OCD Foundation.  Available: http://www.ocfoundation.org/MedSummary.aspx.  Accessed 2014, April 9.

Theorized Causation for Body Integrity Identity Disorder

 

 

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Often, individuals with Body Integrity Identity Disorder (BIID) feel incomplete with having one or more limbs and this feeling of incompleteness, as well as motivation for limb amputation, stem from a variety of reasons.  Which raise the question: Is BIID a psychological and or a biological condition?  What is known about this disorder is the distinct association with distress and impairment, extreme enough to the point of two thirds of those with BIID attempt self-amputation at the risk of death (First, 2005).  To better understand treatment of BIID, one needs to explore the possible psychological and biological components that cause this disorder.

First, to better understand this disorder one should look at childhood predictors.  The majority of BIID suffers report witnessing an individual with an amputation early in life (First, 2005).  In contrast to other children, those with BIID report a fascination with physically handicapped individuals (First, 2005).  This fascination mirrors characteristics of Body Dysmorphic Disorder, in which individuals are aware of their desire’s abnormality and feel torn between the pros and cons of changing their body (de Vignemont, 2010).  Also, in a study conducted by the University of Amsterdam and The Netherlands Institute of Neuroscience at the Royal Academy, researchers found that the onset of BIID occurs in early childhood at an average age of 6.7 years and most commonly among males, who comprised eighty percent of the particapents (Blom, Denys, & Hennekan, 2012).  Blom et al. (2012) states that “the male predominance can be reflective of the fact that men suffering from this disorder are overrepresented in reported cases compared to women because of the violent behavior involved in the act of self-amputation.” (Blom, et al., 2012)  

Further, the early onset of the mismatch between actual and perceived body schema suggests that BIID is a psychosis, additionally suggesting that individuals inherit the disorder.  However, Khalil and Richa (2012) found in their case review, that patients “desire for limb amputation is not motivated by delusion, nor as a defense mechanism for attention” (p. 4).  This finding supports First’s (2005) suggestion that one can rule out delusion as cause a of BIID because those with the disorder recognize that the unwanted limb is in fact their own and fully functional.  The early onset of a desire to self-amputate appears to depend on various factors such as stressful life events, personality traits, and pretending play (i.e., imaginative and fantasy role play).  Shortly after the development of BIID, sufferers report medical problems concerning the undesired body part, and these medical problems often manifest due to avoidance of use (Blom et al., 2012).  Moreover, Blom’s (2012) findings complement First’s (2005) research, which emphasizes sufferers’ preoccupation with amputation that first manifests itself by their pretending to be an amputee.  One can hypothesize that pretend play fuels the development of BIID on a biological basis because it contributes to the neurological remapping that occurs among adolescents, as the brain pruning process still takes place.

Additionally, Kasten (2009) proposes a sexual motive for amputation.  One third of surveyed BIID sufferers state that sexual arousal was a leading cause for amputation.  Among those who expressed sexual motivation for amputation, the amputation site would often change (Kasten, 2009).  Suggesting that these individuals also suffer from paraphilia, a disorder in which self-elected amputation becomes a typical route to sexual arousal. This sexual component, in which individuals fixate on amputation to alleviate sexual anxiety suggests that those with BIID suffer from a psychosexual motive.  However, in a study conducted by Blom, Hennekam, & Denys (2012), the participants report that sexual arousal is not a primary or secondary motivation for amputation.  Instead, the primary motivation reported was to feel satisfied and whole (Blom et al., 2012).  Although the sexual perspective supports a psychological cause, the study conducted by Blom et al. (2012) found that all but one subject reported a non-psychotic diagnosis and did not score positive on the Mini-International Neuropsychiatric Interview for psychotic symptoms.

Psychiatric co-morbidity in BIID sufferers, and literature reviews, suggest no distinction between BIID sufferers and the general public in terms of psychological processing, except for increased depressive symptoms and mood disorders, which are secondary, and do not represent a separate manifestation.  McGeoch, Brang, Huang, Lee, Ramachandran, & Song (2011) propose the reversal of phantom limb syndrome, in which the brain fails to map a particular body part.  Specifically, McGeoch et al. (2011) provided direct evidence that the sense of incompleteness corresponds to a dysfunction in activity in the right parietal lobe, where the brain mass is thinner in those with BIID.  Their findings support the theory that BIID is not simply a paraphilia, but rather a neurological syndrome.  Thus, the brain’s disconnect leads the sufferer to rejected acknowledgment of the disputed body part, which in turn leads to a life of anxiety, depression, and internal-conflict.  These symptoms may lead individuals to self-amputate, even with the awareness that the procedure is life threatening.  Although McGeoch et al.’s (2011) study investigates the tactile perception (i.e., awareness of touch), which is usually associated with body schema rather than body image, it does not explain the body/mind spatial relationship, where the mind is continuously updating limb awareness during movement (de Vignemont, 2010).  Although, this neurological theory is compelling as evidence as to the causation of BIID, much more research needs to be conducted before a clear causation of BIID can be made. 

Reference:

Blom, R. M., Denys, D., Hennekam, R. C., (2012).  Body integrity identity disorder.  PloS One, 7(4): e34702. doi:10.1371/journal.pone.00034702.

Brang, D., McGeoch, P. D., Ramachandran, V. S. (2008).  Apotemnophilia: A neurological disorder.  NeuroRport, 13(19), 1305-1306.

de Vignemont, F. (2010).  Body schema and body image – pros and cons.  Neuropsychologia, 48(3), 669-680. doi:10.1016/j.neuropsychologia.2009.09.022.

First, M. B. (2005). Desire for amputation of a limb: Paraphilia, psychosis, or a new type of identity disorder. Psychological Medicine, 35(6), 919-928.

Kasten, E. (2009).  Body integrity identity disorder (BIID): Interrogation of patients and theories for explanation.  Fortshritte de Neurologie – Pyschiatrie, 77(1), 16-24.

Khalil, B. R., Richa, S. (2012).  Apotemnophilia or body integrity identity disorder: A case report review.  The International Journal of Lower Extremity Wounds, 1-7.

McGeoch, P. D., Brang, D., Huang, M., Lee, R. R., Ramachandran, V. S., Song, T. (2011).  Xenomelia: a new right parietal lobe syndrome. Journal of Neurology, Neurological. doi:10.1136/jnnp-2011-300224.

Body Integrity Identity Disorder (BIID)

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Finding a United States doctor to amputate a healthy limb can be exasperating.  In May of 1998, Phillip Bondy paid U.S. doctor, John Brown, ten thousand dollars to amputate his perfectly healthy left leg in Tijuana, Mexico.  According to the LA Times, renegade Brown, had once been a prominent sex reassignment surgeon in Los Angeles.  However, after a series of botched surgeries, he was labeled “Butcher Brown” amongst the transgender community, and he fled to Mexico.  Brown completed the amputation, easing Bondy’s life long anxiety.  Unfortunately, four days later while recovering in a San Diego Hotel, Bondy died from complications caused by unsanitary surgical equipment (Marrison, 2008).   In 2009, Newsweek reported on ‘Josh’, who had tried for many years to destroy his left hand in the hopes of amputation.  Filled with torment, he used a table saw to remove his unwanted hand, which he then mutilated and disposed of to avoid reattachment (Ellison, 2008).  Ashamed, he remained anonymous out of fear as to how his family would respond to what they believed to have been an accident.  A biochemist by the name of ‘Karl’, wanted both of his legs amputated.  After years of suffering in silence, he put a bucket in his car and placed both legs into the bucket filling it with dry ice.  After waiting four hours, he drove himself to the emergency room.  ‘Karl’ had timed it perfectly and three days later the doctors were forced to amputate.  Other forms of self-amputation have occurred that have involved a variety of various tools.

What do these people share in common?  They suffer from Body Integrity Identity disorder (BIID).  BIID is an extremely rare and under diagnosed condition, due to the secretive nature of those afflicted, as well as the lack of research done it this area.  BIID is characterized by an overwhelming desire to amputate one or more healthy limbs (First, 2005).   According to BIID.org (2011), BIID occurs “when a person’s idea of how they should look does not match their actual physical form.”   The disparity between the individual’s psyche and their body leads to a lifetime of significant anxiety and depression (First, 2005).  These symptoms are accompanied by a compulsion to destroy the undesired limb(s), by any means necessary.

Body Integrity Identity Disorder has been known by several names:  In 1977, Dr John Money, an expert on sexuality at John Hopkins University originally named it “apotemnophilia”, which means love of amputation, implying sexual motive (Money, Jobaris, Furth, 1977).  Dr. Richard Bruno of Englewood Hospital in 1997 proposed the name Factitious Disability Disorder, which he grouped into three different categories: 1) devotees – those who are sexually aroused by amputees, 2) pretenders – those who use wheelchairs, crutches and other devices that mimic a disability, and 3) wannabes – those who wanted amputation themselves (Bruno, 1997).   Suffering as a wannabe, Dr. G. Furth and R. Smith published a book on the subject in early 2000, where he introduced the term Amputee Identity Disorder.  Later in August 2000, the BBC produced a documentary titled “Complete Obsession, Body Dysmorphia” which follows Dr. Furth request to have his right leg amputation by Dr. Smith of Scotland, who had previously completed two voluntary amputations.  However, the Scottish medical authorities refused Furth’s request because of public backlash and negative attention concerning Dr. Smith’s prior indiscretions with regards to the Hippocratic oath.

In 2004, Dr. Michael First a professor of Clinical Psychiatry at Columbia University, published a paper in the journal of Psychological Medicine where he first introduced its current name, Body Integrity Identity Disorder (BIID).  In the article, he wrote about the phone interviews conducted with fifty-two people inflicted with this disorder.  First selected the name BIID to distinguish the disorder from paraphilia, psychosis and Body Dysmorphic Disorder, which he stated it more closely correlated with Gender Identity Disorder (GID, a desire for sexual reassignment surgery).

Currently attention regarding BIID has been surfacing within the scientific community. Many psychiatrists and psychologist speculate that BIID is interrelated to other Body Image Disorders, implying a psychological condition (BIID.org, 2014).  However, researchers are currently attempting to prove the reverse of phantom limb syndrome in relationship to BIID, where an abnormality in the brain is the cause (Blanke, et. al. 2009).  This raises many questions: How is Body Integrity Identity Disorder classified and what are its characteristics?  How does it develop?  What are the ethical issues regarding the treatment of BIID?  The next three posts will address such issues, while looking at possible biological and behavioral-cognitive causations of such a disorder.

References:

BIID info website. Available: http://biid-info.org/Main_Page. Accessed 2014, February 12.

Blanke O, Morgenthaler FD, Brugger P, Overney LS (2009).  Preliminary evidence for a fronto-parietal dysfunction in able-bodied participants with a desire for limb amputation.  Journal neuropsychology 3: 181-200.

Bruno, R.L. (1997). Devotees, pretenders and wannabes: Two cases of factitious disability disorder. Journal of sexuality and disability, 15, 243-260.

Ellison J (2009). Cutting desire. Newsweek (http://www.thedailybeat.com/newsweek/2008/05/08  /cutting-desire.html#sthash.gUAsfCCk.dpuf). 2009 May 05.

First MB, Pincus HA, Levine JB, Williams JB, Ustun B, Peele R (2004). Clinical utility as a criterion for revising psychiatric diagnoses. American journal of psychiatry. 2004 Jun; 161(6): 946-54. PMID 15169680

First MB (2005). Desire for Amputation of a Limb: Paraphilia, psychosis, or a new type of identity disorder. Psychological medicine, 2005, 35:919-928. PMID 15997612

Furth, G. & Smith, R (2000). Amputee Identity Disorder: Information, Questions, answers and recommendations about self-demand amputation. 1st Books Library: London.

Marrison J (2008). ‘Butcher brown’ and the deadly doctors. The world’s most bizarre murders; true stories that will shock and amaze you. 1st ed. London, England: John Blake Publishing; 2008. pp. 121-131.

Money, J., Jobaris, R. & Furth, G. (1977). Apotemnophilia: two cases of self-demand amputation as a paraphilia. The journal of sex research, 13 (2), pp. 115-125.