Juan C. Infante ’19
Body Integrity Identity Disorder (BIID) is a collection of symptoms that manifest themselves in a patient’s desire to amputate otherwise healthy limbs. BIID has traditionally been misunderstood and understudied, but recent findings linking it to specific neural abnormalities warrant a re-evaluation of its definition and available treatment options. Analysis of recent neurological studies suggest that BIID must be recognized as a legitimate disorder with a clear physiological basis. The re-classification of BIID leads to the refutation of classical pro-patient-autonomy arguments and instead calls for paternalistic restrictions on patient autonomy that adhere to the Theory of Future Consent. Recent advances in treatments that safely alter brain function raise crucial questions about physicians’ duty to provide treatment and have far-reaching implications on societal opinions and obligations of and toward patients with BIID.
In September of 1997, Scottish surgeon Robert Smith amputated the leg of Kevin Wright, a man who claimed that he simply “did not want [his leg] because it did not feel [as if it were] a part of [him]” (“My left foot”, 2000, para. 1-4). Mr. Wright claimed that “amputation above the knee was the only feasible option” and that “he simply could not bear his life with his leg intact” (“My left foot”, 2000, para. 14). Reports detail how Mr. Wright was extremely satisfied with the results of his amputation, and how he believed that “his life had been transformed” (Bayne & Levy, 2005, p. 75). The peculiarity of this case lies in the fact that there was nothing medically wrong with Mr. Wright’s leg; he simply did not feel “complete” with his full set of limbs, and underwent an amputation even though there was no apparent physiological need for it (“My left foot”, 2000, para. 3). In essence, Mr. Wright could not contain the desire to get rid of his healthy leg. His apparent cure after the amputation, however desirable, does not obscure the multiple ethical issues surrounding the elective amputation of healthy limbs. Mr. Wright’s discomfort with one of his healthy limbs is, perhaps surprisingly, not an isolated case, but rather a common symptom of individuals suffering from what has been called Body Integrity Identity Disorder (BIID) (Bayne & Levy, 2005, p. 75).
In 2005, Dr. Tim Bayne and Dr. Neil Levy published an analysis of the possible causes for peoples’ desire to become amputees as well as of the ethical considerations of allowing such procedures. While they acknowledged that multiple explanations for this desire could be correct, including other illnesses such as Body Dysmorphic Disorder, they concluded that BIID was “most plausible,” and defended the patients’ autonomous decision to pursue amputations on the grounds that they allegedly met “reasonable standards of rationality” (2005, p. 75). Nevertheless, as this paper will demonstrate, BIID was not completely understood and was largely disputed at the time of Bayne and Levy’s publication. In fact, a portion of their publication focuses on ways to conceptualize BIID, which reflects the lack of understanding present at the time (2005, pp. 76-77). Clearly, BIID was nothing more than a hypothesis. Recent evidence, however, has confirmed the undeniable role of BIID in patients’ desire to undergo amputations and has explained this condition from a perspective that was not previously available. Although BIID continues to be a rare condition, it now raises crucial questions about patients’ right to bodily autonomy, patients’ rationality, and physicians’ duty to provide treatment.
As Bayne and Levy’s writing suggests, at the time of their publication, BIID was primarily considered a “rare psychological disorder” whose neural basis was poorly understood. (2005, p. 75). However, new evidence demonstrates that there are marked neurological differences in specific areas of the brain in patients who have been diagnosed with BIID. This evidence calls for a decisive reassessment of Bayne and Levy’s conclusions in terms of the modern, and now accurate, characterization of BIID. Given that patients with BIID display peculiar neural functions, that were not understood at the time of Bayne and Levy’s work, elective amputations warrant a reevaluation of patients’ rationality and decision-making capacity. In this paper, I will first argue that the now well-understood neurological differences observed in patients with this disorder –which are also explained in the text- require that BIID is approached with treatments that specifically target its known pathology. Then, I will argue that the now understood pathology of BIID calls for placing temporary, paternalistic limits upon the autonomy of patients with BIID; since physicians have a duty to alleviate the suffering of these patients, these restrictions would allow doctors to delay the immediate gratification associated with elective amputations in favor of treatments that adhere to the Theory of Future Consent. The reassessment of this disorder will have far-reaching implications on societal opinions and obligations of and toward patients with BIID.
Understanding the Neurological Origin of BIID
There is widespread agreement that psychological disorders are instantiated in the brain. Thus, the issue with BIID was never whether it was caused by some kind of neural basis, but rather that the particular neural basis was unknown. To understand the neuropathology of BIID it is necessary to consider recent neurological studies that demonstrate a significant link between differential brain function in specific areas of the brain and the “limb ownership” abnormalities that patients with BIID often present (van Dijk et al., 2013, p.1). Using functional MRI techniques, researchers at the University of Amsterdam and New York University found that “activity in the ventral premotor cortex depended on the feeling of ownership [of the limb] and was reduced during stimulation of the alienated compared to the owned leg” (van Dijk et al., 2013, p.1). In other words, individuals who displayed symptoms of BIID showed reduced brain function in the ventral premotor cortex. To fully grasp the relevance of these results, it is necessary to consider further remarks by Arzy, Overney, Landis, and Blanke who note, “Damage to the premotor cortex has been associated with the lack of awareness of a limb in a case report” (as cited in van Dijk et al., 2013, p.1). In addition, a psychological perception study which had subjects watch a rubber hand being stroked by a paintbrush, while their own hand was hidden from view and also stroked, demonstrated that the “subjects experienced an illusion in which they seemed to feel the touch not of the hidden brush but that of the viewed brush, as if the rubber hand had sensed the touch” (Botvinick & Cohen, 1998, p. 756). Remarkably, Ehrsson and colleagues along with Petkova and colleagues note that “neuroimaging studies of this rubber hand illusion in healthy individuals have implicated the ventral premotor cortex in the feelings of body ownership” (as cited in Dijk, 2013, p.1).
These recent scientific findings demonstrate that the brains of patients who do not identify one of their limbs as their own, and who may desire elective amputations, show significant functional differences relative to the “normal brain,” particularly in the ventral premotor cortex. It is therefore evident that the neural basis of BIID is now much better understood. While this new understanding may at first seem insignificant, we will soon discover that it has important implications for determining treatment options and thus that it is relevant for discussing the ethicality of elective amputations.
Bayne and Levy demonstrate that some experts, such as Bruno, believe that “psychotherapy is the appropriate response to [BIID], not surgery. The patient needs to develop insight into the real source of [their] problems before [they] can solve them” (as cited in Bayne & Levy, 2005, pp. 82-83). Statements of these kind highlight the idea that specific, targeted treatments are not considered valid alternatives when the precise pathology of a disease remains unknown. Establishing the clear neuropathology of BIID thus proves to be of vital importance for two main reasons. First, the diagnosis of BIID and its link to the desire for elective amputations becomes undeniable. As such, there can be no doubt that patients who do not identify their limbs as their own require the necessary medical attention and intervention that may have been previously denied due to disputes regarding the nature and legitimacy of BIID. In the past, it was simply not clear whether BIID was actually responsible for the unmanageable desire for amputation. Second, this addresses societal misconceptions and ensures that BIID is recognized as a “real” disorder, since psychological disorders with unclear pathologies may sometimes be given less validity and therefore may not be treated in the same manner as established physiological disorders. The legitimization of BIID as a physiological disorder also shifts the responsibility to treat it from psychologists to medical doctors, thus emphasizing the idea that BIID requires the same attention and treatment as diseases like cancer and diabetes.
Placing Paternalistic Limits on Patient Autonomy
Now that the neural basis of BIID is better understood and BIID has been established as a disorder with clear physiological causes, one may instinctively rush to the conclusion that any treatment (even elective amputation) that alleviates patients’ symptoms of discomfort is justified. In order to fully assess the permissibility of elective amputations as a treatment, it is necessary to examine the functions of the ventral premotor cortex in more detail. Researchers at the University of Santiago de Compostela have demonstrated that, in monkeys, “the ventral premotor cortex is involved in the use of recent and long-term sensory memory to decide, execute, and evaluate the outcomes of [a] subject’s choices” (Pardo-Vasquez, Padron, Fernandez-Rey, & Acuña, 2011, p.1). These “choices,” however, are not choices such as deciding to undergo an amputation, but rather motor responses to perceptual stimuli (Pardo-Vasquez et al., 2011, p.1). In other words, the premotor cortex “takes part in unique aspects of motor planning and [motor] decision making” (Hoshi & Tanji, 2007, p. 234). This additional function of the premotor cortex is best understood with respect to BIID by considering the case study of an anonymous patient called “John.” In an interview with FOX News, “John” recounts the following childhood story, “I remember two buses going in the same direction, and I was standing by the second bus, and I said to myself ‘if I just stick my leg under the rear wheel of the bus, it will run over it and it will have to get cut off’” (Moran & Pouliot, 2009, para. 5). John’s anecdote demonstrates exactly how the decision-making functions of the premotor cortex may act erratically in a patient with BIID. If patients with BIID have uncharacteristic brain functions in the ventral premotor cortex (as has been demonstrated), and the premotor cortex is involved in motor decision-making, then by extension, patients with BIID must also experience uncharacteristic and untraditional patterns of motor decision-making. Such functional abnormalities in the brain may serve as a reasonable explanation for why BIID patients often report that certain limbs are not part of them, as in the case of Mr. Wright. (“My left foot”, 2000, para. 1). After all, why should they feel at ease with their limbs if they feel the impulse to act out motor decisions with them that they cannot rationalize? Clearly, it is reasonable to argue that the compulsion to remove these healthy limbs stems from the fact that these limbs are used to act out the motor decisions that are directed by faulty brain functions, but that patients simply cannot seem to rationalize or understand.
After taking into account the full range of behavioral functions that the premotor cortex regulates, it becomes increasingly difficult to accept Bayne and Levy’s autonomy argument. Bayne and Levi justify their support of patient autonomy by asserting that patients with BIID are rational and can therefore provide fully informed consent for elective amputation procedures (2005, pp. 75, 80). However, I argue that this is far from the case. To understand the ethical implications of providing a less than rational form of consent, it is necessary to consider the ethical principle of Paternalism. According to Dr. Onora O’Neill, a renowned philosopher at Essex University, “patients’ reduced capacities…demand paternalistic treatment” (1984, p. 173). In her discourse on the limited scope of human autonomy, she provides a “framework for working out boundaries of permissible medical paternalism” (1984, p. 177). One of her stipulations involves situations in which patients have a “temporarily impaired capacity for autonomy” (1984, pp. 177-178). In essence, Dr. O’Neill argues that a patient may be prevented from making medical decisions, such as petitioning the amputation of a healthy limb, in cases where the patient may not meet “reasonable standards of rationality” (Bayne and Levy, 2005, p. 75).
Having qualified BIID as a disorder with a clear pathology that can be explained by irregular brain function in the premotor cortex, it becomes evident that patients’ capacity to make decisions is highly compromised by their neurological irregularity. A patient with BIID could never be thought of as a fully autonomous and rational subject, because their autonomous decision to desire an amputation is ill-informed by their frustration with their seemingly incomprehensible patterns of motor decision-making. As such, instances in which patients desire to undergo elective amputations prove to be instances in which ethics requires placing limits on autonomy, since patients have a neurologically-determined “impaired capacity for autonomy” as outlined by O’Neill (1984, pp. 177-178).
Some may argue that this line of paternalistic reasoning suggests that any neural impairment would lead to an impairment of autonomy. They may argue that this leads to the conclusion that, for instance, an individual with a damaged auditory cortex (who is thus deaf) would have impaired decision-making capacity. I propose two counter-arguments to dismiss such concerns. First, such a line of reasoning may justly be qualified as a fallacious reductio ad absurdum; clearly the symptoms of a condition must be analyzed within the context of each disease, to determine whether the disease warrants placing limits on autonomy. Second, the symptoms of BIID lead patients to desire treatments that would physically disable them. Easing patients’ discomfort by allowing them to undergo an elective amputation becomes increasingly problematic when one considers potential treatments and the Theory of Future Consent.
Physicians’ Duty and Potential Treatments: The Theory of Future Consent
Now that BIID has been established as a disorder with a clear neurological basis and the necessity of imposing limits on the autonomy of patients with BIID has been demonstrated, the question becomes whether physicians can reduce the suffering of patients with BIID without the need to perform these elective amputations. It is crucial to note that one of the conditions for O’Neill’s framework is that the “temporary loss of autonomy [must] offer grounds for paternalistic intervention to restore autonomy” (1984, p. 178). In other words, paternalism is mostly justified when there is a belief that the patient may one day be able to provide autonomous informed consent. What O’Neill suggests by this is that a complete analysis of this idea requires an understanding of the Theory of Future Consent. Tis theory expresses the notion that the application of paternalism, which imposes limits on a person’s autonomy when a person is thought not to be fully rational, is justified by the idea that if the person whose autonomy is being limited could somehow regain their autonomy, then they would have agreed with placing restrictions on their own autonomy in the first place (Kairalla, 2007, pp. 31-32). In other words, placing restrictions on a person’s autonomy, when that person is not fully rational, is justified if that person would agree with the restrictions once they become rational again. This idea leads to the following question: Are there alternative forms of treatment that can help alleviate the suffering of patients with BIID while also changing their brain function in a way that allows them to regain their full autonomy?
When considering potential treatments for patients with BIID, Dr. Christopher Ryan, a professor of psychiatry at The University of Sydney, recognizes the limitations that physicians face. Dr. Ryan observes, “The two approaches often held out as alternatives [to amputation] are psychotherapy and pharmacotherapy. Unfortunately, at this point, neither of these has good evidence of efficacy” (2009, p.26). However, experiments similar to the rubber-hand study, which was discussed earlier, can provide valuable insight into potential treatment options that would be much more desirable than amputation. Giraux and Sirigu conducted a study on patients experiencing phantom limbs that analyzed “the effects of visuomotor training on motor cortex activity” (2003, p.107). When subjects “matched voluntary movements of the phantom limb with prerecorded movements of a virtual hand…subjects showed increased activity in the contralateral primary motor area” (2003, p.107). These findings have led Giraux and Sirigu to hypothesize that “artificial visual feedback on the movements of the phantom limb may thus fool the brain and reestablish the original hand/arm cortical representation” (2003, p.107). Although phantom limb syndrome is not nearly the same as BIID, clearly there are certain methods through which uncharacteristic patterns of brain function may be corrected or at the very least attenuated.
The positive result of treating patients with phantom limbs provides hope for finding a form of treatment for BIID. Caloric vestibular stimulation involves placing water of different temperatures into the ear canal in order to test the functionality of acoustic nerves (“Caloric Stimulation”, n.d.). As Lenggenhager and colleagues note, “Ramachandran and McGeoch suggested that caloric vestibular stimulation might alleviate the desire for amputation in individuals suffering from BIID” (as cited in Lenggenhager, Hilti, Palla, Macauda, & Brugger, 2014, pp. 1-2). However, researchers studying the effects of caloric vestibular stimulation on the desire to undergo an elective amputation found that there was “no significant impact of the [stimulation] on body ownership” (Lenggenhager et al., 2014, p. 2). Nevertheless, findings by Braam et al. indicate that a combination of Selective Serotonin Reputake Inhibitors (SSRIs) and antidepressants “seemed to lessen the distress [but] not the desire [for an amputation]” (as cited in Ryan, 2008, p.26). Since the desire for amputation remains, abnormal patterns of brain function are not modified by pharmacotherapy and thus patient autonomy is not restored.
As such, the literature suggests that there are currently no permanent alternative forms of treatment that alleviate the suffering of patients with BIID while also restoring their rationality and autonomy. Does this finding mean that the paternalistic limit on patient autonomy is not justified and that physicians should proceed with elective amputations? Given the promising advances that have been made in treating patients with phantom limbs, the answer continues to be a resounding no. Lenggenhager and colleagues point out the fact that caloric vestibular stimulation “alters activity in core regions of the vestibular cortex” (2014, p. 3). However, as noted earlier in this paper and acknowledged by Leggenhager and colleagues, “fMRI data in individuals with [BIID] suggest alterations in sensory mechanisms in the pre-motor cortex rather than in posterior areas” (van Dijk et al. as cited in Leggenhager et al., 2014, pp.2-3). It is entirely possible that the failure of caloric vestibular stimulation lies in the fact that it did not directly affect the activity of the premotor cortex, the area of the brain thought to be responsible for BIID. If researchers are able to develop a mechanism for stimulating the premotor cortex, there is no reason to believe that the irregular brain activity patterns in patients with BIID will not be normalized. Developing such a mechanism should not be inconceivably difficult given that deep brain stimulation systems are already FDA-approved for Parkinson’s treatment (Brooks, 2017).
Therefore, I argue that the application of paternalism in order to prevent patients from exercising their autonomous right to undergo an elective amputation is justified by the Theory of Future Consent. It is reasonable to argue that, in the very near future, brain stimulation techniques will be able to address the functional brain deficiencies observed in patients with BIID. Once the uncharacteristic patterns of brain activity in these patients are restored, the patients will likely display a radical improvement with regard to their feelings of limb ownership and would utterly reject the idea of voluntary mutilation; the patients’ autonomy would have therefore been restored and they would likely agree with the limits that were placed on their autonomy. In the meantime, through the administration of SSRIs and antidepressants, the suffering of patients with BIID can be minimized while also preventing them from undergoing elective amputations that they would likely consider harmful if they were to regain a fully autonomous status. It is evident that placing limits on the autonomy of patients with BIID protects their bodily integrity, prevents them from making ill-informed medical decisions, and allows physicians to alleviate the suffering of their patients (despite the fact that they must delay their patients’ cure.)
While Bayne and Levy’s argument for permitting elective amputations was more plausible when the neural basis of BIID was poorly understood, recent findings have strongly linked BIID with functional abnormalities in the premotor cortex. The legitimization of BIID as a condition with a biological cause dispels common misconceptions about the validity of psychological illnesses and establishes an imperative for promptly finding an effective cure for BIID. Nevertheless, since patients desiring elective amputations suffer from impaired brain function that leads them to desire treatments that would physically disable them, certain limits must be placed on their autonomy and, as such, not all forms of treatment for BIID are ethically acceptable. As new forms of brain stimulation that could reestablish patients’ feelings of limb ownership loom on the horizon, and pharmacotherapy is available to temporarily alleviate suffering, the imposition of paternalistic limits on patient autonomy proves to be the soundest ethical choice. Paternalism is further supported by the belief that, once these patients regain their autonomy, they would agree that preventing them from undergoing elective amputations was the most morally responsible action. This leads one to further consider the extent to which BIID will be recognized by society as the devastating illness that it is, and how current healthcare delivery models and insurance policies will adjust to encompass this previously overlooked and misunderstood condition.
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