Certain phenomena in the medical realm are kept in abeyance; concealed from the public discourse in the hope that future research may provide more clarity. As appealing as this strategy of eschewal may be, it does little to relieve those individuals currently affected by the respective phenomena, and such force of circumstance thus requires a prima facie consensus to be found. One such phenomenon is a desire for the amputation of an otherwise functional limb, or else to sever the spinal cord resulting in paralysation. Medically speaking this desire has been attributed to a variety of conditions, ranging from Body Dysmorphic Disorder (BDD) to a form of paraphilia, and the most likely explanation: Body Integrity Identity Disorder (BIID) [1].
BIID describes an incongruence; a mismatch between an individual’s anatomy and their sense of a ‘true’ self [2]; a mismatch between their body image and physical body shape [3]. Prior descriptions of the experienced mismatch have focused on the body schema, rather than the body image [4], hence drawing comparisons to other neurological phenomena such as phantom limb, where individuals who lose, or have never had, a limb experience it as still there, and deafferentation, a rare phenomenon in which subjects have lost tactile and proprioceptive input below the neck [5]. However, if we are to accept the label BIID and hence classify it as an identity disorder it is more suitable to align it with unilateral neglect in post-stroke individuals, or asomatognosia in the context of depersonalisation [6]; conditions in which the body image is impaired.
As a result of heightened interest into BIID, empirical data is gradually enabling a relatively dependable characterisation of the condition. The following may be summarised: most individuals reporting phenomena classifiable as BIID are men (although many reasons could act as confounders for this observation); most report a chronic desire for amputation; most report first experiencing this phenomenon at a young age, commonly during early childhood; most report considerable restrictions in their overall functionality as a consequence of the condition; and almost all of those who attempt psychotherapy and/or medication report no long-term improvement of symptoms. In contrast, all patients that underwent amputation report a significant improvement in their functionality, and score lower on a disability scale than individuals who have not undergone surgery. Further, most report a phase of ‘pretending’, whereby they feign disability by using a wheelchair, crutches and the like. With regard to the varying differential diagnoses propounded in recent years (including those aforementioned), certain misunderstandings must be clarified: first and foremost, none of the patients are psychotic; many suffer from depressive episodes or a mood-disorder, but this is to be understood as a secondary comorbidity as a result of the condition’s chronicity; the chronic dysphoria reported is not one of repulsion at the physical appearance of the limb, but rather that it does not feel part of their ‘true’ self, hence the diagnosis BDD is unsuitable. Likewise, as only one-third of the individuals experience sexual arousal with respect to potential amputation, or else to fellow amputees, BIID cannot be primarily understood as a paraphilia. With regard to the etiological aspects of the condition, it is hypothesised that there is a multifactorial explanation, including congenital, psychological and neurobiological aspects; falling short of conclusive evidence for a precise pathogenesis [7].
Turning to the ethical aspects of a potential amputation, let us adhere to certain prerequisites upon entering a hypothetical situation [8]: we have an accountable, competent [9] individual who desires to have his left leg amputated. He first experienced this desire aged eight, he is now forty-four years old and has two failed psychotherapies on his record, one of which was accompanied by psychopharmacological medication [10]. The strain imposed by suffering is severe: for several years he attempted to protect his ‘true’ identity by pretending to be disabled, using a wheelchair in all public spaces, but has now largely withdrawn himself from public life; terminating contact with family and friends and confining himself to the sanctuary of his own home. Let us assume this individual now voices the concrete demand for a referral to a surgeon in order to follow through with the amputation. The question which must be considered is evident: should medical professionals be allowed to accede to this request?
In light of the irreversibility and gravity of an amputation, this question requires careful consideration. What if the future promises to hold enlightening information; would it be right to condemn those currently suffering to watchful waiting, until a time when one may be able to relieve the individual of the desire for an amputation? For example, the premotor cortex, known to play a pivotal role in the integration of sensory information across different body parts, thereby reflecting the feeling of ownership of a limb, has been shown to differ neuroanatomically between individuals with BIID and controls [11]. Such a neural correlate is surely welcomed by the medical society, as a condition no longer exclusively considered to be in psychological or congenital waters opens up many new paths for treatment options. However, it is precisely this notion which forces us to reflect on the very nature of what the medical profession should be about. For this, we must leave the theoretical proximity of the isolated condition we currently label BIID; in doing so, other phenomena may be introduced, the similarities of which will shortly become apparent.
Consider the ongoing debates on euthanasia; on religious motivations for refusing a life-saving blood transfusion, as practised by Jehova’s Witnesses; on moral considerations resulting in practical differences when it comes to resuscitation; on personal choices with regard to any number of potential health risks: smoking, drinking, skiing, bungee-jumping, flying, travelling, eating and the like; and perhaps most importantly: on cosmetic surgery. Uniting this array of examples is the inadequacy of a normative understanding of medicine. For as these phenomena convey, the line between ‘right’ and ‘wrong’, between what is normal and what is not is difficult to draw. At least in the developed world, the universal access to and realisation of human rights, in particular freedom of expression, is pushing the boundaries of individualism deep into unknown territory. With this in mind, should it be within a medical professional’s jurisdiction to decide on procedures without clear medical indications? Procedures indicated, instead, by an expression of individualism; as variants of the norm which must be legitimate in a tolerant society. The traditionally paternalistic doctor-patient relationship has come under increasing criticism, and rightly so. Hence follows the need to rethink the role which medical professionals play in certain situations, thereby enabling patient-demanded therapies as have been adopted in all but one of the phenomena discussed thus far, namely BIID. The role of a medical professional in such situations would be that of a mere medical service provider. But there is room for common ground: patient-demanded therapies need not leave the responsibility solely on the patients’ shoulders; a doctor need not be reduced to a conveyer of facts and skill. Rather, as the expert in the respective field, one is always free to give advice; to voice one’s own opinion based on moral convictions and clinical experience. The line between an informed decision based on professional advice and outright manipulation may be fine, but medical professionals must hold themselves accountable to finding the right balance. With respect to BIID, this would not mean every surgeon is obligated to amputate; it is up to the discretion of each individual whether they can support this therapy or not. Instead, it is about creating legal opportunities for such a medical procedure, thereby preventing undignified and desperate attempts through any number of household practises, including the use of a shotgun, a chainsaw and a wood chipper [12].
Prior to drawing any conclusions, we must consider whether there are any convincing ethical arguments prohibiting amputation. C. J. Ryan’s summary of these shall now be outlined [13]. The first, though weakest, arguments voiced in this vein are the famous dictum primum non nocere (first do no harm), as well as the possible illegality of amputating a limb. These arguments do not hold: countless other examples are readily available where healthy tissue is removed or damaged for a perceived benefit — an incision in the skin when operating an inflamed appendix, for example. Further, amputation is not classified as ‘improper medical treatment’ as there is some evidence for its therapeutic benefit. A stronger argument for prohibiting amputation concerns the paucity of knowledge available on healthy limb amputation. However, in addition to the logical flaw of the argument (for data cannot be collected without first amputating), Ryan highlights: perpetrators of this ‘seem to have an unrealistic view of the way medicine proceeds when dealing with rare or unusual disorders… When illnesses occur infrequently, treatment decisions and even clinical guidelines are often based merely on small case series and published case reports’ [14], as is the case with BIID. A similar argument derivable from the paucity of knowledge is the call for caution prior to such a radical and irreversible treatment. Two points counter this stance: first, there is no alternative, groundbreaking treatment option in sight. Second, doing nothing would negate the suffering for those with BIID, for whom an amputation may well be the best option. Finally, the fear of a slippery slope is voiced by many contributors to the research in this field [15]: by allowing amputation to become socially accepted, the prevalence of BIID may well increase, which is a problem only if it leads to individuals who would otherwise not have been affected by BIID to seek amputation. Ryan refutes this: ‘in short, the argument that invokes the possibility that formalisation of BIID as a diagnosis might see its prevalence grow, or demand for amputations increase, seems to rest on nothing more than fanciful speculation’ [16]. With these considerations resolved, a prima facie argument for the amputation of a limb can indeed be ethically reasoned.
Thus follows the need to consider which situations require medical professionals to act as mere service providers (ignoring the fixed capacity for advice). It is here where I wish to introduce the concept of 1° and 2° effects of harm [17]: 1° effects of harm are those acts in which another person is directly harmed, whereas 2° effects of harm are understood as indirect harms. Thus serving to distinguish between a severity of harm that can be inflicted on another person, this categorisation would enable an appropriate reaction; namely, lawful prohibition of 1° effects of harm; moral responsibility for considering, and perhaps preventing, the 2°. The underlying reasoning follows: in cases where an act causes a direct negative effect on another individual to an extent that is intolerable, it will be classified as 1° and thus be put under the state’s, in this case the medical professional’s, jurisdiction. As an example, consider the extensive use of antibiotics. Due to the serious threat of antibiotic-resistant ‘superbugs’, a threat transcending a mere handful of individuals, the use of such drugs without a clear indication is deemed a 1° effect of harm, therefore available on prescription only. In contrast, the desire to amputate one’s left leg may be considered a 2° effect of harm, as the harm caused to other people is only indirect: for example, the harm from the emotional strain it inflicts on the patient’s family. In this situation it is not for the state, nor a medical professional, to restrict an individuals’ freedom; we would probably be outraged if it did. Instead, we can see it as our moral responsibility to attempt less radical forms of therapy first, and to seek specialist advice in the face of such phenomena [18].
It is clear that this ‘extreme’ form of individualism may quickly be negatively perceived; ranked as the fetish of a hypertolerant, naïve minority. But on the basis of mere guesswork, on the basis of nothing which we can convincingly adopt as a placeholder for the truth, the only reliable leg we are left to stand on is that of self-determination. Thus with this in mind, there is no legitimacy for the restriction of someone else’s freedom in a situation containing exclusively 2° effects of harm —regardless our own moral convictions. As the metaphor goes, it follows that any other limb, not stable enough to stand on nor desired to be kept, may well be legitimately amputated by a willing medical professional. After all, as other interventions such as cosmetic surgery show, there is currently a perverse double-standard being set merely on the basis of certain social conventions, which have very little to do with the long list of medical and philosophical considerations that have been the subject of much research and debate.
Footnotes
[1] BIID is also known as Amputee Identity Disorder (AID), hence currently classified as a type of identity disorder. For an in-depth discussion on the various disorders, including the argumentation in favour of the term BIID, see Bayne and Levy (2005). The title of this essay is taken directly from them, as a homage to their paper. See also Blom et al. (2012)
[2] Michael B. First (2005)
[3] Blom et al. (2016)
[4] I follow Shaun Gallagher’s widely accepted clarification of both terminological and conceptual confusions in the literature regarding body image and body schema. Hence, a body image ‘consists of a system of perceptions, attitudes, and beliefs pertaining to one’s own body… It can include mental representations, beliefs, and attitudes where the object of such intentional states is or concerns one’s body.’ In contrast, a body schema ‘is a system of sensory-motor capacities that function without awareness or the necessity of perceptual monitoring… [it] involves certain motor capacities, abilities, and habits that both enable and constrain movement and the maintenance of posture’ (p. 24). See Gallagher (2005), Ch. 1. Despite this book being published in 2005, there are still consistent confusions and inconsistencies regarding the use of this conceptual differentiation, see for example Blom et al. (2016)
[5] Shaun Gallagher (2005), pp. 15-25
[6] Bayne and Levy (2005)
[7] This is just a selection of results; the full list of initial characterisations is significantly longer. Some or all of these results are reported by: Blom at el. (2012): Body integrity identity disorder; Blom et al. (2016); Michael B. First (2005); First & Fisher (2012); E. Kasten (2009)
[8] Indeed, there are individuals for whom this hypothetical is reality. It is this force of circumstance which requires a consensus to be found as to how the medical profession should react to these phenomena
[9] This is not to say that an unaccountable/incompetent individual experiencing the desire for amputation would be disregarded; rather, we will require a whole new argumentative process, dissecting the notion of accountability/competency with respect to illness, both physical and in particular mental, which is surely an important discussion that, however, exceeds the scope of this essay. In this case, let us bracket this issue for the time being, for as has been discussed: all of the research into this phenomenon refutes a psychotic component as an underlying cause of BIID
[10] Again, this is not to say that individuals must first receive psychotherapy and/or medication prior to the more radical measure of amputation. This, too, will need to be carefully analysed, so let us assume a hypothetical situation in which other treatments, including medication and psychotherapy, have failed
[11] Blom et al. (2016)
[12] Bayne and Levy (2005)
[13] C. J. Ryan (2008), pp. 27-32
[14] Ibid., p. 28
[15] Ibid., p. 29
[16] Ibid., p. 30
[17] See Twyla Michnevich and Milan Röhricht: The origin of morality in light of self-determination and its impact upon legislation (published on isolatarium.org) for a more detailed discussion on this. The following explanation of 1° and 2° effects of harm has been kept as close to the original as possible
[18] Ibid.
Bibliography
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