Amputee by choice: Body integrity Identity Disorder and the Ethics of Amputation

Authors
Tim Bayne and Neil Levy

Source
Amputees By Choice: Body Integrity Identity Disorder and the Ethics of Amputation Journal of Applied Philosophy 22 (1), 75–86. doi:10.1111/j.1468-5930.2005.00293.x (PDF download)

Abstract
Should surgeons be permitted to amputate healthy limbs if patients request such operations? We argue that if such patients are experiencing significant distress as a consequence of the rare psychological disorder named Body Integrity Identity Disorder (BIID), such operations might be permissible. We examine rival accounts of the origins of the desire for healthy limb amputations and argue that none are as plausible as the BIID hypothesis. We then turn to the moral arguments against such operations, and argue that on the evidence available, none is compelling. BIID sufferers meet reasonable standards for rationality and autonomy: so long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their requests.

Analysis
The abstract for the paper pretty much says it all. The authors make a strong argument in favour of using surgery as an option, at least in some cases. One wonders why is it that those papers that suggest surgery might be allowable appear generally ignored whereas those who oppose surgery are refered to more?

"Should surgeons be permitted to amputate healthy limbs if patients request such operations? We argue that if such patients are experiencing significant distress as a consequence of the rare psychological disorder named Body Integrity Identity Disorder (BIID), such operations might be permissible." In our view, the key point here is the "significant distress as a consequence of BIID". The majority of all transabled individuals we correspond with experience not only significant distress, but ongoing and unrelenting distress.

"We examine rival accounts of the origins of the desire for healthy limb amputation and argue that noen are as plausible as the BIID hypothesis. (p.75)" There have been many origins suggested for people requesting impairments, and we are glad that the authors believe that BIID is the most plausible cause. It is important to separate the origin of request for impairments from the origin of BIID. It is important to understand why someone asks for an amputation. Indeed, if it is as a result of a psychosis, then acceding to the request may not be wise. If it is due to BIID, then, we suggest it may be the only option. That said, we suggest that understanding the origin of BIID may not be as useful as realising that medication or therapy doesn't help.

"We examine rival accounts of the origins of the desire for healthy limb amputations and argue that none are as plausible as the BIID hypothesis. (p.75)" We can't refute the fact that there are many reasons other than BIID that might cause people to seek amputation of a healthy limb (or seeking another impairment). But none of the other "concepts" seem to fit as well as BIID fits.

"We then turn to the moral arguments against such operations, and argue that on the evidence available, none is compelling. (p.75)" This is important to stress. The moral arguments against surgery are not compelling.

"BIID sufferers meet reasonable standards for rationality and autonmy. (p.75)" Those of us with BIID are not deluded nor psychotic, and we understand the consequences of our request.

"as long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their request (p.75)" And this is the crux of the matter. There might well be a less invasive way to handle BIID than surgery. But until such a way is found, we should have access to a method that works now. A "cure" 10 years from now isn't helping us now. And most of us are in a living hell. 5, 10, or 25 years in hell is a lifetime. Do not condemn us to a life sentence of suffering because someone, maybe, some day, may find a better solution.

"Two and a half years later, the patient reported that his life had been transformed for the better by the operation. (p.75)" That is, more than two years post surgery, the individual has had a significant improvement to his life due to the surgery.

"A second patient was also reported as having been satisfied with his amputation. (p.75)" And another testimony that surgery works.

"Smith was scheduled to perform further amputations of healthy limbs when the story broke in the media. Predictably, there was a public outcry and Smith's hospital instructed him to cease performing such operations. (p.75)" Smith surely did not just book the operating theater for elective amputations without seeking approval from someone in the hospital. It is not the kind of surgery any surgeon would perform without first checking in with those above them in the hierarchy. But because of media publicity, they changed their ninds? This seems to shift the debate from one of sound medical practice to one of public relations, and we are concerned when an ill-informed public, victim of a media that sensationalises everything for the sake of sales, influences medical decisions.

"First, what would motivate someone to have an apparently healthy limb amputated? Second, under what conditions is it reasonable for doctors to accede to surch requests? We believe that the first question can shed significant light on the second, showing that, on the evidence available today, such amputations may be morally permissible. (p.75)" "On the evidence available today...". We agree that more research is necessary. The research we would like to see is a long term study using surgery as a method of treatment for BIID individuals, which would prove (or perhaps disprove) that surgery is a sound medical form of treatment for BIID. The authors discuss this later on.

"One possibility is that wannabes suffer from Body Dysmorphic Disorder... A second explanation is that wannabes have a sexual attraction to amputees or to being an amputee... A third explanation is that there is a mismatch between the wannabe's experience of their body and the actual structure of their body (p.75-76)" The authors list these three reasons as possibility for requiring healthy limb amputation. The second explanation is clearly describing what was labelled by Money as apotemnophilia. The authors are separating apotemnophilia from BIID, whereas we believe (as indicated by First) that BIID is a re-labelling of the condition that explains it better than the label of apotemnophilia would.

"On the one hand, one could conceive of BIID in terms of a mismatch between the patient's body and their body schema... Further, wannabes who have had the amputation they desire seem, as far as we can tell, to be content to use a prosthesis. This suggests that the problem they suffer from is not primarily a conflict between their body and their body schema. A more plausible possibility is that BIID involves a mismatch between the wannabe's body and their body image. (p.76)" This makes the case against Body Dysmorphic Disorder.

"Whereas the person with anorexia or bulimia fails to (fully) recognise the discrepency beten her body and her body image, the wannabe is all too aware of this dicrepency (p.77)" Those with BIID are fully aware that their limbs/body are not distorted or ugly. We know that our bodies are "normal".

"None of the the explanations of the desire for amputation that we have outlined attempts to provide complete models of the phenomenon: the BDD model does not attempt to explain why wannabes might regard the limb in question as diseased or ugly; the apotemnophilia model does not attempt to explain why wannabes might be sexually attracted to a conception fo themselves as amputees; and the BIID model does not attempt to explain why wannabes might fail to incorporate the limb into their body image. (p.77)" We don't think the models themselves are attempting to provide models, it is more a factor of people attempting to label the condition and these labels may not be the most appropriate.

As for BIID not explaining why wannabes might fail to incorporate the limb in the body image, perhaps it's because it's not possible? Have people with Gender Identity Disorder been able to "change their minds" about their own body image? We think not.

"It could be that there are two or three bases for the desire for amputation, with some patients suffering from BDD, others suffering from a paraphilia, and others suffering from a form of BIID. Some individuals might even suffer from a combination of these disorders (p.77)" This is obviously a posssibility. If something doesn't fit nicely in one container, we might need two or three different containers to fit it all in. But how is this concept helpful, practically, to those of us who require an impairment such as paraplegia, amputation, blindness or deafness?

"Sexuality is, after all, an essential ingredient in most people's sense of identity (p.77)" Yes, this is an important point. I have been saying that there is no sexual element to my desire to be paralysed. It would be more accurate to say I do not want to be paraplegic because of a sexual need, since sexuality is a part of me, whether I am able bodied or not.

"there seems good reason to doubt whehter any of these individuals suffered from BDD, strictly speaking. Neither fo the two individuals featured in Complete Obsession appears to find their limbs diseased or ugly. (p.78)" Another strike against the concept of BDD, although it is really rephrasing what has already been said elsewhere.

"there is a large overlap between the classes of devotees..., pretenders..., and wannabes... Because of this overlap, the data researchers have gathered on devotees may be relevant to the desire for amputation. (p.78)" There is indeed overlap, where many wannabes pretend (as a form of therapy in many cases), where many devotees are also wannabes, etc. But we do not believe that, despite the overlap, data about devoteeism is relevant to the desire for amputation. There is overlap between cigarette smoking and drinking alcohol, that doesn't mean that data about drinkers necessarily explains smokers.

"although First's study provides some support for thinking that the desire for amputation can have a sexual component in some instances, it offers little support for the paraphilia hypothesis as best explanation of the disorder. (p.78)" As stated earlier, sexuality is a part of everyone's lives. It just isn't the principal reason most people with BIID need an impairment.

"First's data provides equivocal support for the third model, on which the desire for amputation derives from the experience of a gulf between one's actual body and one's subjective or lived body. (p.78)" The third model being BIID. Not only First's study shows that, but anecdotal evidence and informal conversations with dozens of transabled individuals also show this.

"The first and perhaps weakest of the three arguments is familiar from other contexts. Whether wannabes are correct in thinking that their disorder requires surgery or not, we must recognize that a significant proportion of them will persist in their desire for amputation, even in the face of repeated refusals, and will go on to take matters into their own hands. (p.79)" The first argument, as the authors state it is "Harm Minimization".

We won't know beyond the shadow of a doubt whether surgery will help us until, and unless, we have received the surgery we seek. Even if there were studies upon studies showing it does not work (which there aren't, I hasten to point out), this is something we will need to prove to ourselves. And the authors are right, even being turned away from medical offices, we will continue to seek a solution for ourselves. Often leading to long and painful situations, which are a burden on the transabled individual, their families, and even to a point, the medical system. A "real life" example of this can be found in Lily's story.

"Given that many patients will go ahead with amputations in any case, and risk extensive injury or death in doing so, it might be argued that surgeons should accede to the requests, at least of those patients who they (or a competent authority) judge are likely to take matters into their own hands. (p.79)" So, just who would be a competent authority? A psychologist? A psychiatrist? Considering the lack of education and understanding about BIID in the "psy community", this concept is scary, at best.

It has been discussed in various places that it might be an interesting dilemna to put in front of a surgeon: "Doctor, give me a spinal cord transection, or I will kill myself". Blackmail of sorts, but it might drive the point home. If we agree that life with a disability is more important than death, then this dilemna would certainly put the weighing of the question in a different light.

"At least so long as no other treatments are availalbe, surgery might be the least of two evils. (p.79)" Yes, absolutely. By all means, you guys continue to seek less invasive solutions, but in the meantime, don't refuse us the only thing known to work. By the refusal to provide surgery, you are condemning people to live in hell.

"It is well-entrenched maxim of medical ethics that informed, autonomous desires ought to be given serious weight... If it is permissible (or even obligatory) to respect informed and autonomous rejections of life saving treatment, it is also permissible to act on informed and autonomous requests for the amputation of a healthy limb. (p.79-80)" This is an argument worth considering. People are allowed to refuse live saving treatments, if they are aware of the consequences. People can chose to die, even if there would be a simple procedure such as blood transfusion that could save them. Yet we're not allowed a relatively simple procedure to increase our quality of life.

"We shall consider two objections to the argument from autonomy. The first is that wannabes are not fully rational, and that therefore their requests should not be regarded as autonomous... These patients are not globabally irrationa. One might argue that despite the fact that their beliefs about the affected limb have been arrived at irrationally, their deliberations concerning what to do in the light of these beliefs are rational, and hence ought to be respected (p.80)" Well, the few respectable studies that looked at this point to the fact that the majority of people with BIID are not psychotic, nor are they delusional. We are quite rational. And in most cases quite informed about what we need, and the consequences of surgery. "Filtering" those of us who aren't rational would be a relatively simple process.

"Although wannabes seem not to experience parts of their body as their own, they do not go on to form the corresponding belief that it is alien. (p.81)" No, the body parts, the body, is very much our own, and we know it is "normal". It simply isn't the body we're supposed to have.

"One might think that the rational response to a conflict between one's subjective experience of embodiment and one's body would be to change one's experience of embodiment rather than change the structure of one's body. The claim is correct but irrelevant: the wannabe's desire for amputation appears to be born out of an inability to change the way in which she experiences her body. (p.81)" In other words, it doesn't matter why we feel the way we do, we aren't able to change the way we feel, and the only thing that would help would be surgery.

"A useful angle on the question of whether the requests of wannabes could be competent is provided by contrasting wannabes with people who desire cosmetic surgery... While one can certainly argue on feminist grounds that such people are not fully competent, these arguments have left many people unmoved. (p.81)" Yeah well... Don't need to elaborate on that.

"the latter individual is seeking to mould their body to an ideal that few of us aspire to, and one that has been formed under conditions, that are far from perfect, but why should these fact cut any moral ice? (p.81)" This goes towards the impact of society's negative bias against disabilities. Without the perception that impairments are bad (or even repugnant), would this debate even be happening?

"A second objection to the argument from autonomy is that the wannabe is not in a position to give informed consent to the surgery, for he or she does not - and cannot - know what it is like to be an amputee without first becoming an amputee. (p.82)" This argument is often used, mostly by people with disabilities themselves, in the form of "if you knew what it was like, you wouldn't want it".

The thing is, most transabled individuals are as informed as possible, know more about what they seek than most GPs do.

"But a more important point to be made here is that the objection appears to set the bar for autonomy too high. Autonomy demands only that one have an adequate understanding of the likely consequences of an action, and one can have a reasonable understanding of what life as an amputee would be like without first becoming an amputee. (p.82)" And that, we do. Obviously, there are exceptions, people who glamourise the condition they seek, that are ignorant of the reality of life with a disability, but we suggest that these people, faced with the real prospect of surgery, would not actually seek such a solution.

"A third argument in favour of operating appeals to the therapeutic effects promised by such operations... (i) wannabes endure serious suffering as a result of their conditio; (ii) amputation will - or is likely to - secure relief from this suffering; (iii) this relief cannot be secured by less drastic means; (iv) securing relief from this suffering is worth the cost of amputation. This argument parallels the justification for conventional amputations. (p.82)" Wow! Nicely stringed together. We couldn't agree more.

"Bruno suggests that psychotherapy is the appropriate response to the disorder, not surgery. The patient needs to develop insight into the real source of her problems before she can solve them. Bruno's proposal is empirically testable: we can evaluate whether the desire for amputation responds to psychotheraphy, and whether amputation simply leads to the displacement of the patient's symptoms. What little data we have to date suggests that Bruno is wrong on both counts. (p.83)" Of course Bruno is wrong. His study was based on individuals that were non-typical.

"As far as we can tell, such individuals do not develop the desire for aditional amputations (in contrast to individuals who have had cosmetic surgery). (p.83)" It's a one time deal to mental and emotional peace.

"a controlled study would presumably require medical amputations, and ethical approval for performing such operations is unlikely to be forthcoming without this very data. (p.83)" We've often remarked on this vicious circle. It is very frustrating, and it becomes easy to assume that the medical community hides behind the dilemna in order to avoid having to make a difficult decision.

"is securing relief from this suffering worth the cost of amputation? This, of course, will depend on the degree of suffering in question and the costs of amputation. (p.83)" One must not take only financial costs in account, but how many lives are being destroyed, the cost on society, etc. We have no doubt that looking at the big picture, the conclusion can only be that the cost-benefit analysis leans in favour of surgery for most people who have Body Integrity Identity Disorder.

"one could also argue that those of us who are able bodied have an overly pessimistic image of the lives of the disabled. As able-bodied individuals, we might be tempted to dwell on the harm that accompanies amputation and minimize what is gained by way of identification. (p.84)" Bingo. Again, this raise the idea that the negative bias against "disabilities" taints the reasoning.

"We suspect that much ot this hostility derives from the sense of repugnance that is evoked by the idea that a person might wish to rid themselves of an apparently healthy limb... Even when a limb is severely diseased and must be removed in order to save the patient's live, the thought of amputation strikes many as distasteful at best. (p.84)" And once again: bias against disabilities. This is not a new concept, there have been many studies showing that society in general shuns the idea of disability, and other studies specifically looking at the medical community, who also has a negative prejudice against life with a disability. It is quite possible that until that bias is lifted, transabled individuals will never have access to the surgery we need. And that bias is unlikely to ever be lifted (except in one-on-one basis).

"The worry is that giving official sanction to a diagnosis of BIID makes it available as a possible identity for people. To use Ian Hacking's term, psychiatric categories have a 'looping' effect: once in play, people use them to construct their identities, and this in turn reinforces their reality as medical conditions. (p.85)" We disagree with that analysis. We've discussed this concept which we call coming out of the woodwork effect elsewhere.

"Could a similar effect occur for BIID? Is it likely that the inclusion of the disorder in the forthcoming DSM-V will generate an explosion of cases on the order that seen in teh study of dissociation? Perhaps, but there is reason to think that such fears are unwarranted. The desire for amputation of a healthy limb is at odds with current conception fo the ideal body image. (p.85)" As we discussed in the coming out of the woodwork opinion piece linked above, we don't think there would be such an explosion. But we also appreciate the irony of this argument. Because of the very bias that impacts the likely provision of surgeries to people with BIID, it is unlikely that hordes of people would suddenly decide they have BIID and adopt this condition as their own!

"In a world in which many are born without limbs, or lose their limbs to poisons, landmines, and other acts of man and God, it might seem obscene to legitimise the desire for the amputation of healthy limbs. But we have argued that, in the cases of at least some wannabes, the limb in question is not as healthy as it might appear: in an important sense, a limb that is not experienced as one's own is not in fact one's own. (p.85)" Voluntarily seeking an impairment when many people are genuinely suffering because they acquired impairments in often traumatic manner without wanting it appears obscene. This reasoning seems to be based on the concept that the disability of one impacts on someone else. Were it possible to "trade" states of health, perhaps we would be better off. I'll give you my healthy body, give me your paralysed body. Making two people happy. But the unhappiness of someone who didn't want to become paralysed will not be directly affected by my state of able-bodiness. It's a bit like the argument mothers use to force children to finish their meal: "eat up, because there are starving children in Bengladesh". We fail to see the link that ties the two.

"Disorders of depersonalisation are invisible to the outside world: they are not observable from the third-person perspective in the way that most other disorders are. But the fact that they are inaccessible should not lead us to dismiss the suffering they might cause. (p.85)" We've often said that in many ways it is worse to have something so intangible as BIID, as people either think it doesn't exist, it doesn't have an impact, or we have control over it. Yet, we do suffer.

"Whether amputation is an appropriate response to this suffering is a difficult question, but we believe that in some cases it might be. (p.85)" We agree. So, how do we get the medical practitioners to listen to the argument put forward by philosophers and ethicists such as Bayne and Levy?