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J Med Ethics 36:189-190 doi:10.1136/jme.2009.033175
  • Response

Body integrity identity disorder: response to Patrone

  1. Anthony W F Harris2,3
  1. 1Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, NSW, Australia
  2. 2Discipline of Psychiatry, University of Sydney, Sydney, NSW, Australia
  3. 3Department of Psychiatry, Westmead Hospital, Westmead, NSW, Australia
  4. 4Department of Psychiatry, Royal Prince Alfred Hospital, Camperdown, NSW, Australia
  1. Correspondence to Christopher Ryan, Department of Psychiatry, Westmead Hospital, Westmead, NSW, 2145, Australia; christopher.ryan{at}sydney.edu.au
  1. Contributors All authors contributed in an amount commensurate with the order of publication.

  • Received 7 September 2009
  • Accepted 9 September 2009

Body integrity identity disorder (BIID) is a very rare condition in which people experience long-standing anguish because there is a mismatch between their bodies and their internal image of how their bodies should be. Most typically, these people are deeply distressed by the presence of what they openly acknowledge as a perfectly normal leg. Some with the condition request that their limb be amputated.1 We and others have argued that such requests should be acceded to in carefully selected patients.1–4 Consistent with this view, a group at the University of Sydney is developing a programme to better understand and treat BIID and to offer amputation if appropriate.

In a recent paper, Patrone argues that such amputations should be prohibited.5 He suggests that authors supporting amputation in BIID depend on analogies with more familiar conditions and then claim that the ‘the desires, choices and requests of BIID patients should be held to exactly the same standards and treated with exactly the same respect as the desires, choices and requests of any more conventional patient’.5 He believes that these analogies are invalid and that therefore the arguments for amputation are invalid.

Patrone concentrates a great deal upon whether a decision to have a particular medical intervention is to be regarded as ‘rational’. Unfortunately, he makes no attempt to define what he means by ‘rational’, so it will be necessary to clarify this before proceeding. We will take a decision about medical treatment to be rational if it manifests reasonable practical reasoning that is based on agreed or accepted premises.

Analogies with cosmetic surgery

Patrone seems to believe that the singularly unusual nature of the BIID sufferer's request may be enough to conclude that they are ‘as a type’ incapable of making a rational decision about amputation. Believing that supporters of amputation may share this view, he suggests that supporters draw an analogy with people who request radical cosmetic surgery, because, he says, in these cases ‘whether or not the patient's motivations are rational is taken to be irrelevant to their ability to make this decision’.5

He has completely missed the point of analogies with cosmetic surgery. The reason that supporters of amputation draw such analogies is not that surgeons don't care if a patient's request is rational: in fact, cosmetic surgeons go to great lengths to assure themselves that their patients' requests for surgery are valid.6 Rather, these analogies are intended to demonstrate the very thing Patrone finds so hard to understand—that surgeons will ethically accede to requests for even bizarre body modification if the patient is competent to request it and if it is generally in the patient's best interests overall.

Patrone also suggests that the analogy with cosmetic surgery is flawed because amputation, unlike cosmetic surgery, ‘necessarily entails permanent disability’ and ‘serious harm’.5 There are two problems with this line of reasoning. First, many requests for body modification, frequently acceded to, are permanent and do carry a degree of associated disability. The prime example of this, an analogy that Patrone studiously avoids throughout his paper, is gender reassignment surgery, but irreversibility and some measure of disability are also associated with a variety of other body modifications, such as facelifts, breast reductions or augmentations and penile implants. The second problem is that the harm that will follow such modifications has to be weighed against the benefits that such operations are intended to achieve.

Some women who undergo breast reduction will permanently lose their ability to breastfeed. However, for women who have spent their lives uncomfortable with the size of their breasts, or who are burdened by related backache, the harm associated with an inability to breastfeed is seen as minor compared with the relief of suffering they hope to gain with surgery. We have now seen five patients with BIID who have wanted a leg removed. All recognised that amputation would involve a degree of disability, but all regarded this as a small price to pay to relieve their suffering. All were keen to obtain a prosthesis to minimise any disability.

The analogy with Jehovah's Witnesses

In their defence of amputation, Bayne and Levy suggest an analogy with Jehovah's Witnesses' refusal of blood products, to demonstrate that we should not ignore a patient's request merely because we do not agree with the benefits that they feel will accrue.2 Patrone attacks this analogy on acts/omissions grounds, suggesting that those who opt for treatment ‘divert medical resources away from other patients … put[ting] other patients in danger’, while those who simply refuse treatment do not. This is simply wrong. Sometimes a patient's decision to refuse treatment consumes considerably more resources than a decision to accept treatment. It is well known that Jehovah's Witnesses who undergo major surgery consume considerably more resources than other patients—longer stays in an intensive-care unit for example—precisely because they have refused blood products.7

Patrone's analogy with anorexia nervosa

Having rejected analogies commonly used to support elective amputation, Patrone offers his own analogous condition to oppose it—anorexia nervosa. Patrone sees anorexia as ‘the best analogy with BIID’, because both disorders are thought to concern ‘a discrepancy between body type and body image, and both express themselves in patient choices that, were they respected, would cause serious physical harm’.

In equating anorexia with BIID, Patrone reveals a profound misunderstanding of the phenomenology of both conditions. Patients with severe anorexia nervosa believe they are too fat, even when their body weight is so low as to be virtually incompatible with life. They refuse food because they do not want to be ‘so fat’. Their decision not to eat cannot be regarded as rational, because the premise that they are fat could not be accepted by anyone. People with BIID say that the presence of their limb does not comply with their internalised image of their body and this discord causes them enormous distress. There is no objective way of assessing a person's internalised body image, and there are only indirect ways of assessing a person's distress. Unless there are reasons for believing that the person is deliberately dissembling, we will tend to accept their report as true. If this premise is accepted, then, with no other available remedy for their distress, amputation, even with its inherent problems, seems a rational choice to make.

Conclusion

Requests for amputation in BIID are analogous to requests for cosmetic mammoplasty or gender reassignment surgery. People with BIID are deeply distressed by the presence of their limb, and some reason rationally that since other mechanisms aimed at relieving their suffering have failed, they will seek amputation in the hope that it may succeed. When Patrone arrogantly asserts that ‘BIID patients lack the perspective from which to make informed evaluative choices about their options (options that, it must be stressed, include living with the disorder as psychologically frustrated but able bodied)’, it is abundantly clear that he doesn't understand the disorder, for it is just this choice that many sufferers have spent their lives grappling with.

Footnotes

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

References