Address to hospital ethics committee
Contents |
Abstract
This paper reflects my personal experience of Body Integrity Identity Disorder (BIID,) and I will limit it to consideration of elective amputation for the relief of symptoms of genuine BIID sufferers. I will briefly discuss its origin and impact when unresolved, and its alleged sexual association. The number of sufferers will be mentioned, as will medical considerations of funding, indemnity, and community acceptance. Finally I will cover the life of the new amputee, and how the surgeon abides by his ethic to do no harm. Throughout this paper, I will refer to the BIID sufferer, because believe me, if you have BIID, you eventually reach the stage where you suffer every day.
Introduction
I was asked by Dr. Schutz to address this committee, as a self-cured sufferer of BIID. From earlier than ten years old, I had always felt my left leg somehow “didn’t belong,” and that my body would not be as I saw myself, until I had the leg amputated above the knee: specifically, halfway up the thigh. Over the next thirty years, this desire led to countless episodes of depression, psychiatric assessments, one suicide attempt, one failed attempt to freeze the leg, and several attempts to injure the leg.
Finally, at the age of 41, after hitting an emotional brick wall, I successfully froze the leg with dry ice, aware of the possibility of dying or of destroying my marriage. I left the Austin Hospital two weeks later, on crutches, with my wife and the stump of my choice, and life changed for the better from that day. In the twenty-one years since, I have not had a single regret at having my leg amputated, but rather, that I had not done it sooner.
Over the years I had been too ashamed of what I believed to be my perverted desire, to discuss it with anyone, even my treating psychiatrists, so I continued to be treated for ‘clinical depression.’ On my first failed attempt, while not admitting to my desire to be rid of my leg, I did plead that it be amputated. Instead, all treatment was taken from my control, and I left the hospital after three months of plastic surgery to patch-up the damage, my brain subjected to no less than six or eight treatments of electroconvulsive therapy, and addicted to high doses of tranquillisers and tricyclic antidepressants.
BIID: Origin and Impact
The desire for amputation of a genuine sufferer will be of long standing, often from childhood, and certainly before sexual maturity: a point I will return to later. The limb or limbs will probably be specified exactly as to level of amputation, and will be unlikely to vary over time. There may or may not be an amputee who imprints early in the child’s life, giving rise to their continuing belief of body image error. The desire for amputation will probably intensify as the sufferer ages, and if left unresolved, can lead to continuing depressive illness, attempts to damage or self-amputate the limb or limbs, suicide attempts, failure to perform in life and underdevelopment of career and enthusiasm for life.
Eventually the desire to lose the limbs becomes so intense, that life can be effectively blocked, as the obsession with wanting amputation rather than the amputation itself becomes overwhelming. In the absence of proven therapies and the apparent lack of efficacy of psychotropic drugs, the only known restorative therapy is amputation surgery. It was also possible that up to the present, the treating doctors and psychiatrists may have had no idea they were in fact treating BIID, as the sufferers perceived that the disorder was so bizarre and perverted, that no clue would have be given. It would have been up to the skill of the psychiatrist to recognise BIID.
However, over the last few years, the availability of the Internet has given access to knowledge of the disorder, and it is likely that people with any sort of strange quirk or secret wish will eventually start surfing for answers, and will hit upon their own diagnosis. The number of chat groups attests to this, although apparently few, no indication of actual numbers can be deduced. But as a result of the new opportunity for self-diagnosis, and the increasing public awareness of BIID, psychiatrists are going to find a small, but increasing number of sufferers presenting for treatment. (Aside: it may be said that ‘general public’ awareness is still low, but any report with the word ‘amputate’ or similar, will be instantly recognised by the BIID sufferer.)
By now, the sufferer will have a good idea of how life as an amputee will be, often having practiced with crutches, peglegs, wheelchairs, hooks or whatever, in their years of preparation for the big event. They may be well educated, and appear to all tests and investigations to be of perfectly sound mind, and not under any misapprehension or delusion of life as an amputee. They are also probably good workers, diligent and keen, and able to continue working in the same or even better employment, with little expectation of allowance for their perceived disability.
Based on such a profile of the typical sufferer, it should be well within the talents of the medical profession, to identify the genuine sufferer from those who think it could be fun, a nifty trick to try, or an easy way to get a life on a disability pension. Possibly some exclusion period before qualifying for a pension would exclude this last group.
Sexual Association
Many studies of BIID, under whatever name that has been applied since its recognition as a disorder, have speculated on how it is related to sexual urges, the desire for an amputee sexual partner, and even how images of amputees may be used to assuage their sexual urges.
It is my belief that the sexual association is a result of the disorder, rather than a cause. The sufferer having had the desire for amputation from childhood, reaches puberty with their body image still not resolved as desired. This then could, and probably does, lead to the adoption of the alternative desire for a sexual partner who is already an amputee: not quite the same thing, but under the influence of raging teenage hormones, it probably seems a viable option, and may well become imprinted.
How the sufferer uses the images of amputees through those developmental years, possibly has an effect on the course of their disorder. This may vary from images of the opposite sex being of little or no importance and having no effect on their desire for amputation, through to the extreme ‘devotee’ who is intrusive into the privacy of amputees, and liable to become a social pest.
That theory is however, a digression from my assertion that any sexual association with BIID, is incidental to the validity of BIID as a legitimate disorder, that deserves treatment as does any other disorder.
Medical Considerations
One of the first considerations a disbelieving public will want to know, is “are we tax payers going to pay for their perverted surgery?” In a word, I would say “yes.” As a disorder, the sufferer has as much say in its expression as does the schizophrenic, only the treatment is different. However, if it came to the crunch, my guess is that most would be amputees, would mortgage the house to pay for their surgery. Much the same would apply to prostheses, although there may be many who would eschew such devices, and rely on crutches and wheelchairs for mobility, and arm stumps as an assist to their remaining hand.
Before being offered surgery, the BIID sufferer will undergo psychiatric assessment for maybe two years to confirm their expectations and resolve. If the sufferer has not yet done so, it is time they told those they love and live with of their plan, and practiced living each day with the doomed limbs out of use.
As for the limbs amputated on request, a balance will need to be struck with the sufferer, the medical profession and ‘Joe Public’ as to what is an acceptable level of disability. Requests for amputation of both arms, or three or four limbs would no doubt be seen as unreasonable. My suggestion for debate would be to proceed with the amputation of no more than two limbs, and not more than one arm. This will not be entirely acceptable by the sufferer, as their body image will still be as wrong as ever, however, offered as a treatment process, this will give the sufferer cause to ponder their desired level of disability and dependence on others for daily living.
By the time for surgery, the sufferer and the medical team, comprising surgeon, one or two psychiatrists, and possibly occupational and rehabilitation therapists, will have agreed on the limbs to be amputated. So rather than absolute refusal to amputate any limbs, surgery would be performed for the agreed amputations. Psychiatric assessment would continue over a further two to five year period, with the intention of dissuading from further surgery, or at the very least, to ensure the sufferer is adamant. Should further surgery be granted, it may be reasonable that the sufferer be expected to meet all associated costs, and that they have sufficient resources to provide for their own care.
To set-up a treatment regime where no-one is allowed more than one limb amputation, is not going to be of any joy to a sufferer wants say, both legs amputated, as in frustration, they will still be compelled to take their own measures to remove the remaining leg. So on balance, I would see no problem in amputating two limbs in one operation. To amputate both legs, to whatever level requested, to double hip disarticulation, is only a matter of degree over a single amputation, the BIID sufferer having already pictured life in a wheelchair rather than on crutches or a prosthesis. I would also see a request for amputation of one arm and one leg to be reasonable.
While some members of the medical profession would see it as a gross obscenity to haggle over which limbs to amputate, there will doubtless come the time when that is exactly what will have to be done, to avoid the possible disaster of self-harm.
Should the new amputee want a prosthesis, they would be unlikely to expect top-line components offered on the free limb scheme, and may even be keen to try new ideas and experimental devices, as repayment for the privilege they have been given by way of amputation surgery.
Doctors would obviously be protected from legal action in relation to the requested amputation, only as far as they would be indemnified against any other elective surgery. They would still be liable for anything that could be construed as poor medical practice, but known side-effects like phantom-limb pain, would be at the sufferer’s risk.
The ever vigilant community would no doubt be aghast that such surgery would be performed just because “some dill wants their leg amputated!” That was once the reaction to abortion, gender reassignment, breast implants and so on. The community will need convincing that such a procedure can be in the sufferer’s interest, and cost effective for the community by way of improved productivity by a reinvigorated worker, reduced costs of ongoing psychiatric care, and the costs of attempted and successful suicides. More significantly though, could be the costs saved by avoiding the possibility of the sufferer becoming sufficiently desperate to stage a so called accident, with the associated risk of a disastrous and expensive outcome, and the possible risk to other community members innocently involved in the event.
Life for the New Amputee
This is something the new amputee will be well prepared for. They will have spent maybe many decades imagining, rehearsing and preparing themself for the day they will go home in triumph as a genuine amputee. As long as the psychiatric assessment has been done diligently and accurately, there should be no doubt that the new amputee will be happy with the result. They will have some margin for error for not quite to expectation, but compared to their old life, the new one will be like a rebirth.
There is plenty of evidence that even the most seriously handicapped person who had no choice in their condition, can live a full and happy life with a number of limbs missing, spend life in a wheelchair and so on. True, there are many who wish it wasn’t so, but likewise there are some who would not go back to the way they were, because they may have to give up too much of what they now have. How much more likely is it then, that the person who has spent a lifetime wishing they were an amputee, is going to be thrilled with their new form, and will reassert themself as a newly invigorated member of society.
Doctors, and the surgeons in particular, see themselves as visiting no harm upon their patients, and to amputate a healthy limb on an apparent whim will test that ethic. Consider however, the bitter despair of a BIID sufferer turned away from their only safe option for a happy and fulfilling life, leaving them more likely to seek self-harm to get rid of the despised limb. This is not to blame the doctor for increasing their despair, but rather that the doctor has to some extent, failed in his duty of care to provide treatment for the sufferer. Doctors maybe should restate their duty, so as to provide the best outcome rather than the least harm.
Life as an amputee is not as bad as some people would assume, and how bad it is, depends on the attitude of the amputee. It is always going to make a difference to life, and to some it may be a simple inconvenience, or to others a challenge to push through the barrier placed in their life by fate. I can assure you, that for the genuine BIID elective amputee, it is nothing short of a joyous rebirth in the body of their lifelong dreams.
Supplementary Statement
This assessment of ‘disability’ is made with due deference and regard for those people who in any way, wish they had a fully able body. There is nothing I can say to those who think that even the idea of elective amputation, is an abomination.
It is not a fact of life that every person who has a limb deficiency, be it from birth or by amputation, has a life of misery and a continuing longing for the missing limbs. There are many examples of even quadruple amputees leading full and happy lives with suitable assistance. While there are some who lead a life of regret, there are many to whom the loss is a minor matter. The only unhappy competitor one is likely to see at the Paralympics, is one unhappy with their own performance, not with the disability that sees them competing.
On such a premise, a properly screened BIID sufferer, will be fully aware of the difficulties of life with their requested amputation, and the amputation of a single limb is likely to be no more serious than a minor inconvenience and challenge.
Amputation of both legs will, at worst, be life in a wheelchair, not an uncommon eventuality, nor a barrier to a full and happy life. It could be anyone’s guess, if the next person they meet is walking on a pair of prostheses. (Note: the possibility of death during or caused by surgery, is a risk that every BIID sufferer will have considered, and by the time they submit to surgery, is a risk they are prepared to take.)
Amputation of an arm and a leg is relatively common, and with a leg prosthesis, presents little more difficulty than that of a single arm amputation.
The amputation of both arms is somewhat more disabling, but certainly not insurmountably so. I believe it is reasonable for both the aspiring double arm amputee and the treating medical practitioners, that one arm only be amputated at the first operation. The option of the other arm being amputated is kept open, providing that after a period of experience and continued counselling, the desire persists.
The amputation of three or four limbs, particularly as the level of amputation rises, becomes increasingly disabling, and so I would apply the same rationale as for the double arm amputee.
It bears repeating, that often with the BIID sufferer, the precise level of any requested amputation is as critical as the limb itself. Where it becomes apparent that no amount of ‘therapy’ is going to reduce the desire for particular amputations, the sufferer will never be made ‘whole’ until all amputations have been made to the required image. For as long as the body does not match the brain image, the BIID sufferer may continue to be at risk of self-harm.
Author: Robert Vickers, Friday 12 August, 2005.
