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Clinical ethics
Disfigured anatomies and imperfect analogies: body integrity identity disorder and the supposed right to self-demanded amputation of healthy body parts
  1. D Patrone
  1. Union Graduate College and Mount Sinai School of Medicine, Schenectady, New York, USA
  1. Correspondence to Dr D Patrone, Bioethics Program, Union Graduate College, 807 Union Street, Humanities Building Room 020 Schenectady, NY 12308, USA; dpatrone{at}gmail.com

Abstract

Patients with the controversial diagnosis of body integrity identity disorder (BIID) report an emotional discomfort with having a body part (usually a limb) that they feel should not be there. This discomfort is so strong that it interferes with routine functioning and, in a majority of cases, BIID patients are motivated to seek amputation of the limb. Although patient requests to receive the best available treatment are generally respected, BIID demands for amputation, at present, are not. However, what little has been said in the ethics literature on the subject tends to favour doing so in cases of BIID. The general argument is that BIID demands should be respected, first, because of the importance that is already placed on respecting autonomy in medical decision-making contexts and second, because of the potential harm of not providing amputation coupled with the fact that no alternative means of relieving suffering exists. The defence of the right to self-demanded amputation is thus typically supported by the use of analogies with other unproblematical cases in order to show that the denial of BIID patient demands is inconsistent with conventional medical norms and practices. This paper criticises the appropriateness of the particular analogies that are thought to shed light on the allegedly unproblematical nature of BIID demands and argues that a proper understanding of the respect for autonomy in the medical decision-making context prohibits agreeing to BIID demands for amputation.

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Footnotes

  • Competing interests None.

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

  • i Almost all of the empirical work on this disorder and, as far as I know, absolutely all of the ethical discussions regarding it, treat BIID entirely in terms of a demand for amputation. However, even a cursory examination of the extensive internet presence of the “BIID community” shows that this is a narrower account of the disorder than those who identify themselves as BIID patients commonly, although not exclusively, adopt. Within the BIID community, it is commonly accepted that any desire to become disabled in any way can constitute BIID. Often, those claiming to have BIID do not desire amputation but desire, instead, to become deaf, blind, brace users, or, what appears to be most common, paraplegics. Such people may not, in fact, be rightly regarded as having BIID, but it bears emphasising that, as an e-mail discussion between First and one of the internet BIID advocacy groups reveals, the reason that non-amputee cases are currently excluded from the literature is largely due to the fact that First’s relatively small study of BIID simply could not provide sufficient data to support or refute such an extension of the diagnosis. First admits that he suspects that further study will reveal non-amputation-desiring cases of BIID, and this study is currently underway. See http://transabled.org/thoughts/an-email-exchange-with-dr-first-about-biid.htm. However, lacking that data, given that the ethical discussion has thus far only recognised amputation BIID, and given that none of the arguments here turn on the specific surgical nature of BIID patients’ desire for disability, I will adopt the standard terms of the ethical discussion and speak as if BIID is only associated with a desire for amputation. If it turns out that non-ampuative BIID is recognised, the language of this argument would have to change, but the reasoning behind it would remain unaffected.

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