Amputation as a treatment for BIID

[Professor Yaffle]

The current thread about transgenderism (http://www.internationalskeptics.com/forums/showthread.php?t=230077) got me thinking about a few things. For me, that issue is as simple as the facts that transgender people tend to be extremely unhappy in the gender they are born with, treatment based on trying to change the way they feel about their sex/gender does not work, and treatment based on physically changing their bodies does work in resolving the dysphoria they feel. That got me thinking about other disorders that are defined by dysphoria at ones physical body not matching up to ones own image of the self.

The disorder that immediately sprang to mind was Body Integrity Identity Disorder, in which people feel that a part of their body does not belong to them and seek to have it amputated. I realised that if I looked at it the same way as transgenderism/gender identity disorder, there really should be little objection to allowing such people to have access to amputation as a treatment, where psychological treatments fail. Yet my gut instinct is that it is wrong to allow someone to create a less complete body, even though I can't really rationalise why I should think this.

And it seems my gut objection is very strongly shared by the medical community and society at large: there was one doctor in scotland who successfully (ie the patients were very happy with the outcome and it relieved their distress at the mismatch between their body and their perception of it) performed two amputations. However, once this hit the media, the doctor was ordered by his hospital to discontinue such operations.

From what reading I have done, psychotherapy does not seem to be successful in treating this disorder and the most plausible theory explaining it (IMO) is that it is a neurological one in which the part of the brain mapping a certain body part does not develop correctly. Similar effects can sometimes temporarily be seen in patients post-stroke, or after a physical injury - a condition known as asomatognosia. The neurologist Oliver Sacks suffered from it after a fall in which he broke his leg:

In that instant, that very first encounter, I knew not my leg. It was utterly strange, notmine unfamiliar. I gazed upon it with absolute non-recognition […] The more I gazed at that cylinder of chalk, the more alien and incomprehensible it appeared to me. I could no longer feel it as mine, as part of me. It seemed to bear no relation whatever to me. It was absolutely not-me – and yet, impossibly, it was attached to me – and even more impossibly, continuous with me.

The suffering caused by BIID seems to be severe in at least some cases, with sufferers sometimes resorting to DIY amputation - with all the complications that may ensue from that.

So this all leaves me with a couple of questions:
1. Should we offer therapeutic amputation to people with severe BIID where psychological treatment has failed?
2. What do you think are the reasons for the widespread idea that it shouldn't be done, both among medical professionals and the general public?

I got a lot of my information and ideas from this paper, so you might like to read it too, if you find this topic interesting.
http://users.ox.ac.uk/~sfop0174/biid.pdf


*I put this in social issues because I see it as a bit of a counterpart to the transgender thread - it would fit just as well in science and medicine and I have no objection if the mods think it should be moved.

 

[Jim_MDP]

It's an interesting counterpoint to the opinions for/against uh... gender reassignment surgery (is that right?).

The BIID concept is as difficult for me to grasp. My flippant comment would be... if we're talking about an arm or leg, start small with a finger or toe and see what happens. Lopping of a limb is quite radical and irreversible.

 

[Sledge]

One objection society can have is that you're effectively allowing people to choose to become disabled. In a country that provides financial and other support to people with missing limbs, is this fair? Of course, the counter point is the cost incurred by people hacking their own limbs off if denied surgery.

The more I think about it from a medical point of view, the less I can see a reason for not offering surgery. Transgendered people have a difference between how their brain is set up and how their body is (gross oversimplification, I am not a doctor, etc). We can't change the brain, we can change the body, so we change the body. Can't think of a single reason not to do the same for BIID sufferers. Still seems wrong, though I don't know why.

 

[kerikiwi]

One objection society can have is that you're effectively allowing people to choose to become disabled.

Or, they already are disabled by their perception that they need to have parts of themselves amputated.
How do they function best? With the offending body part, or without it?

 

[Wolfman]

I have two thoughts on this...one on the pro side, and one on the con side.

On the pro side, many of these people end up trying to amputate the limb on their own, at much greater risk than having it amputated by a surgeon. Others will attempt to intentionally mangle it so that it must be amputated...again, subjecting themselves to much greater risk. If a psychological evaluation were done that indicated there was a significant risk of an individual taking such action, then I think a case could arguably be made for having a surgeon do it for them.

But on the other side of this...what if it feeds into the disorder? A person gets one limb amputated, and then later decides they want another one removed, also? Where does it stop?

I have no problem whatsoever in labeling this as a psychological disorder, and requiring that people who are in danger of damaging/removing their own limbs should first face mandatory psychological treatment, quite possibly confined to a hospital. If their condition proves intractable, then amputation might be considered as a final option, but only after all others are exhausted. For the simple reason that as terrible as it seems to me, amputating a limb and letting them return to a 'normal' life is a superior option to keeping them permanently drugged/hospitalized to prevent them from injuring themselves. But only if there is reasonable assurance that, after the limb is removed, no such further desire to cause self-harm will persist.

 

[Sledge]

Or, they already are disabled by their perception that they need to have parts of themselves amputated.
How do they function best? With the offending body part, or without it?

Yes. The more I think about this, the more my answer becomes a definite and firm "I don't know." This seems to happen more and more as I get older.

 

[Jim_MDP]

On the pro side, many of these people end up trying to amputate the limb on their own, at much greater risk than having it amputated by a surgeon. Others will attempt to intentionally mangle it so that it must be amputated...again, subjecting themselves to much greater risk.

I'm at best, vaguely aware of this topic. Are you suggesting large numbers of sufferers?

Yes. The more I think about this, the more my answer becomes a definite and firm "I don't know." This seems to happen more and more as I get older.

Agreed... it's an odd one.

 

[Tsukasa Buddha]

Since it is so rare, there has not been enough study to determine the most beneficial treatment.

The authors are correct in their assertion that patients with BDD should not have their requests for operative intervention met. That relatively common condition is well studied, and, not only are operations ineffective, but there is clear evidence that other treatments – pharmacological and psychological – are effective.3 Whether or not patients with BIID might benefit from amputation is far less clear.

We have argued previously that amputation may be justified, legally and ethically, in BIID, if a patient is suffering significantly and if trials of other treatments have failed.4, 5 Body integrity identity disorder is so rare that it is likely that for some time to come much of the information about its outcome and treatment will be necessarily sourced from case reports. There is a strong onus on the writers of those case reports to be clear about their diagnostic categories and to provide sufficient information to allow assignment of the patients described into those categories.

Linky.

Right now most of the work out there is focused on the ethical views of autonomy and such things, but not on whether or not surgery is actually the most beneficial course.

 

[Professor Yaffle]

But on the other side of this...what if it feeds into the disorder? A person gets one limb amputated, and then later decides they want another one removed, also? Where does it stop?

The paper I linked to goes into this. Unfortunately there isn't enough data to know for sure, but what little there is doesn't suggest this as a common problem.

...on the scant evidence available, wannabes who succeed in procuring an amputation seem to experience a significant and lasting increase in wellbeing. Both of Robert Smith’s patients were reported as having been very happy with their operations, and the nine subjects in First’s study who had had an amputation also expressed satisfaction with the results [27]. As far as we can tell, such individuals do not develop the desire for additional amputations (in contrast to individuals who have had cosmetic surgery). Nor, as far as we know, do such patients develop (unwanted) phantom limbs. Of course, it may be that the sample to which researchers have had access is self-selecting: adherents of the BIID account are motivated to come forward to adduce evidence in favour of their theory, while those who have had more unhappy
experiences simply lose interest in the debate, or are too depressed to motivate themselves to take any further part. In any case, the sample sizes are too small to be statistically significant. Unfortunately, it is hard to see how it will be possible to collect sufficient data of the required sort. We can of course follow the fortunes of those who have arranged non-medical amputations for themselves, but a controlled study would presumably require medical amputations, and ethical approval for performing such operations is unlikely to be forthcoming without this very data.

 

[Bikewer]

I listened to a program on NPR's Science Friday about the disorder; it seems to stem from the fact that the brain's internal "map" of the body has become damaged in some way, and that as a result the brain no longer models or recognizes the offending body part as being integral.
This can be, as noted above, extremely distressing.

As it is technologically impossible at present to restore the "map", it may well be that amputation is the only route to restore the person's feeling of integrity.
However, the loss of a functional limb is pretty extreme...

A tough call.

 

[MG1962]

I listened to a program on NPR's Science Friday about the disorder; it seems to stem from the fact that the brain's internal "map" of the body has become damaged in some way, and that as a result the brain no longer models or recognizes the offending body part as being integral.
This can be, as noted above, extremely distressing.

As it is technologically impossible at present to restore the "map", it may well be that amputation is the only route to restore the person's feeling of integrity.
However, the loss of a functional limb is pretty extreme...

A tough call.

A documentary a few years ago went through much the same discussion. At the end of the show they pretty much admitted medical science has nothing. The only known cure for BIID is to in fact do the amputation

 

[joolz]

I had the same thought reading the transgender thread. People may truly believe that any part of their body is 'wrong'.

I saw an excellent BBC documentary on it a while ago, it shocked me as I had no idea the condition existed. I can't find the documentary online, but here are a couple of people who took the matter into their own hands and injured themselves:




These people seem to be happy now, but I don't think 'resolving' it yourself is the right way. Like gender reassignment, I think it is important to have the relevant psychological counselling so you can rule out any other causes of feeling this way before you take the major step of having surgery.

 

[sgtbaker]

I am interested in finding those who've gone through with the amputation and if they are pleased with their decision. I found one study that said of the two people asked, they were both satisfied with the results.

 

[MG1962]

I am interested in finding those who've gone through with the amputation and if they are pleased with their decision. I found one study that said of the two people asked, they were both satisfied with the results.

Yes the doco I watched did a follow up as well with the person who was the center of the treatment. He was extremely happy with the results

 

[sgtbaker]

Yes the doco I watched did a follow up as well with the person who was the center of the treatment. He was extremely happy with the results

Did this person amputate and then move on to use a prosthesis or were they happier with no limb at all?

 

[MG1962]

Did this person amputate and then move on to use a prosthesis or were they happier with no limb at all?

Well it was a below the knee amputation, but it seemed he had no interest in getting a prosthesis. To be fair they only followed the person for a couple of months after the surgery, so what happened after that I really cant say

 

[sgtbaker]

Well it was a below the knee amputation, but it seemed he had no interest in getting a prosthesis. To be fair they only followed the person for a couple of months after the surgery, so what happened after that I really cant say

To be honest, this has to be the most bizarre (for lack of a better word) condition I have ever heard of. I just wonder if it's the actual leg that they don't want or just the one they are born with. If a person just wants to be without a leg, it seems kind of weird that they would willfully limit themselves. On the other hand if they just one the one they were born with removed and plan on using a prosthesis, it make even less sense because it's complicating a rather simple process. I am an amputee, I know all the nitty gritty annoyances that come with needing a prosthetic.

 

[wylz]

I have Body Integrity Identity Disorder. I have been involved in BIID advocacy for nearly 15 years now.

It is correct that there is very little "evidence" that surgery is a success. There haven't been enough studies to formally examine the success (or lack thereof) of surgery for BIID.

However, I personally know about 36 individuals who have had surgery for their BIID. None of them regret it. They all say that since their surgery, they aren't experiencing the disabling distress caused by BIID.

For what it's worth, BIID also expresses itself by a need to be paralysed, or blind, or deaf, depending on the person. Please refer to the latest paper by Dr. Michael First for further information on this.

 

[joolz]

To be honest, this has to be the most bizarre (for lack of a better word) condition I have ever heard of. I just wonder if it's the actual leg that they don't want or just the one they are born with. If a person just wants to be without a leg, it seems kind of weird that they would willfully limit themselves. On the other hand if they just one the one they were born with removed and plan on using a prosthesis, it make even less sense because it's complicating a rather simple process. I am an amputee, I know all the nitty gritty annoyances that come with needing a prosthetic.

In the links I posted one person had a prosthesis fitted, the other uses a wheelchair.

 

[TubbaBlubba]

However, I personally know about 36 individuals who have had surgery for their BIID.

"About 36"? Maybe 36.3 or 35.8?


ETA: Not intended to seem hostile, it's a pet peeve of mine.