Healthy limb amputation: ethical and legal aspects
Contents |
[edit] Original article
[edit] Author(s)
Johnston, Josephine, and Elliott, Carl
[edit] Source
Clinical Medicine, Journal of the Royal College of Physicians, Volume 2, Number 5, 1 September 2002 , pp. 431-435(5). Available at IngentaConnect
[edit] Abstract/Overview
A surgeon in Scotland has amputated the legs of two consenting, physically healthy patients. Although a handful of medical professionals believe that the desire for healthy limb amputation is symptomatic of a mental disorder that can be treated only by amputation, there is currently no consensus on what causes a person to desire such a disabling intervention. As long as there is no established body of medical opinion as to the diagnosis and treatment of such a condition, performing the surgery may be a criminal act. Given the ethically problematic history of surgery for psychiatric conditions, as well as the absence of sound medical data on this condition, surgeons should exercise great caution before complying with a request to amputate a healthy limb.
[edit] Comments/Analysis
“Although a handful of medical professionals believe that the desire for healthy limb amputation is symptomatic of a mental disorder that can be treated only by amputation, there is currently no consensus on what causes a person to desire such a disabling intervention. As long as there is no established body of medical opinion as to the diagnosis and treatment of such a condition, performing the surgery may be a criminal act. Given the ethically problematic history of surgery for psychiatric conditions, as well as the absence of sound medical dat on this condition, surgeons should exercise great caution before complying with a request to amputate a healthy limb” (p. 431)
Chicken and egg, vicious circle. More studies are needed, but how do you prove that surgery is not the avenue? You exahust other avenues first. Or you study one case and extrapolate. If you take case studies, one case report at a time, of the Falkirk amputees, and of Lily, then it is clearly the case.
“Before the amputation, this patient was reportedly considering suicide, but two and a half years after his amputation he told the Observer, ‘I have happiness and contentment and life is so much more settled, so much easier’” (p. 431)
One more anecdotal statement about success. How many more anecdotes does it take? If statistical data isn’t ok, as Ramachandran suggests, then case reports should be relied on. These reports clearly show success.
“Money et al termed the condition ‘apotemnophilia’, meaning a sexual attraction to becoming an amputee. They distinguised it from ‘acrotomophilia’, or an attraction to amputees”. (p.431)
Many seem to miss that distinction, though not the authors of this paper.
“Surgeons faced with a patient requesting the amputation of a healthy limb might well refuse on ethical grounds, citing the motto: primum non nocere, or ‘first do no harm’. Yet it is not at all clear that the harm of amputation for these patients is less than the harm of living with a desire so obsessive that it leads to thoughts of suicide. Nor is it clear that the amputation of a healthy limb necessarily conflicts with the goals of medicine. If the empirical data on the efficacy of the procedure were to prove convincing, it might well be argued that the disability caused by the loss of a limb is a reasonable therapeutic trade-off, given the relief of suffering that the amputation could produce.” (p.432)
Supports our position on the hippocratical oath.
“Moreover, surgeons have already established at least three precedents for elective removal of healthy body parts. The first is cosmetic surgery. [...] The second is living-donor organ transplantation. [...] third precedent: sex reassignment surgery” (p 432)
Non-BIID precedents for surgery. But we need more “empirical data”.
“Should surgeons amputate the limbs of amputee wannabes? We argue that they should not” (p. 432)
Disapointing. Interesting how armed with the same information, we draw different conclusions.
“a court might consider a healthy limb amputation itself to be negligent because the procedure is not yet considered by a responsible body of medical opinion to be an appropriate and effective treatment of a medical condition” (p. 432)
Again, chicken/egg controversy. It needs to be accepted before the courts accept it, but it can’t be done until the courts accept it.
“Performance of such novel surgery in the absence of any research to suggest that the surgery is either indicated or effective may go beyond the bounds of reasonable medical care” (p. 432)
If you can’t do surgery because it hasn’t been proven to work, how do you prove it works? Argument precludes itself, it’s circular logic, is it not?
"Wannabes in search of hospital amputations could try to extend the Wilson case and argue that healthy limb amputations are merely one of a group of procedures not generally performed for their therapeutic benefit, but performed simply because a competent adult requests them."(P.433)
What, using the Body Integrity Identity Disorder could be looked as just an Extreme Body Modification argument? Is this a tool to get what we want? What if the damage to the future of BIID sufferers is greatly increased due to this argument?
“healthy limb amputation is simply an extreme example of a person exercising their right to control their body. Surgeons and hospitals are involved only because they are the best places to get safe and tidy amputations” (p.433)
Yes! If home safe and reliable remedy/procedure existed they would be used. But this Body Modification argument really makes BIID appear more benign than it really is.
“many surgeons may still refuse to perform the operation, reasoning that the amputation of a healthy limb needs to be justified by something more than a mere desire” (p. 433)
They need proof? Ok, but how do we give such proof?
Using the Body Modification argument, it appears to come down to just a “mere desire”, but it isn’t, it is a question of self-image and self-perception.
But is it really a case of needing proof? Or a question of prejudice and negative perception of disability (for doctors, courts, society)?
“There have been no published studies suggesting that amputation is an effective treatment for the condition, very few about the effectiveness of psychotherapy” (p.434)
Again, chicken/egg. There can be no study showing surgery works if nobody performs surgery because there’s no study showing surgery works. Yet, people who have received amputations say they are happier after than they were prior.
“After wannabes have invested such enormous emotional resources in getting a procedure that is not only irreversible, but which they have always seen as the only possible solution to their problems, some may well find it difficult to admit to themselves that it has been a mistake” (p.434)
I used to share that thought, however close interaction with realised wannabes changed my mind.
Also, personal experience: I have not always thought that getting an SCI was the only solution. I arrived at that conclusion after exhausting therapy and medication.
“Very little public testimony has emerged from wannabes who have chosen not to pursue amputations, who have chosen alternative methods for dealing with their desires, or who have undergone amputations and regretted it later.” (p.434)
We suggest that is because such people don’t exist, or are the anomaly rather than the norm.
“It would be short-sighted to embark on yet another surgical treatment for pychiatric condition without first subjecting it to the rigorous standards of research and ethical review that have come to charactrise sound scientific medicine” (p.434)
Ok, but what about those who suffer in the meantime? “oh, we know this might help you, but it’s not been proven, so we won’t give it to you”. In order not to be short-sighted, treatment is denied to people who would probably be healed by it. Back to acceptable proof, which the authors make not-accessible and unreachable. It is worth noting as well that most surgical treatments for psychiatric conditions have usualy been done against the patient's wishes, whereas transabled individuals want surgery.
“Amputee wannabes should be encouraged to seek help not from surgeons, but from psychiatrists and other mental health professionals.”(p.434)
Personal experience shows therapy (whether psychotherapy, or counselling) does not work. Anecdotal evidence from other transabled individuals also shows it doesn’t work. In fact, a psychiatrist in the documentary “Whole” says something to the effect that “therapy doesn’t make one scrap of difference for these people”.
Also, most mental health professionals are unaware and ignorant about the condition, which isn’t yet classified in the DSM or other accepted medical/psychiatry journals. Is it any better to refer someone to therapy when therapy has not been shown to work? “Damage” is not as evident from therapy as it is from surgery, but potential is there. Since it doesn’t work, and people who have BIID usualy experience intense emotional turmoil, delaying the only known solution is in fact more damaging than not.
This goes back to societal/medical prejudice against disabilities.
“Once the desire for amputation is recognised as a formal psychiatric disorder, these linguistic and institutional structures may also help nurture and shape an emerging social identity” (p.434)
This is the “Coming out of the woodwork” argument. Claiming that there is an increase of cases in the condition after it has been accepted and recognised. But people can’t say they have something if they don’t know what they have is an actual condition, which they tend to learn only once it is accepted/recognised.
“For example, the desire for amputation appears to overlap with a sexual attraction to amputees” (p.434)
Devotees vs Wannabes. They are often present in the same person, but they don’t necessarily overlap. To say it overlaps because they are found in the same person would be akin to stating that smoking and drinking overlap, because many people who have a drink also enjoy a cigarette with their drink.
“Anecdotal evidence suggests that a smaller number of people desire disabilities other than amputations, such as paraplegia or blindness” (p.434)
This is a small mention of the fact that it isn’t just about amputation. How does it go from “anecdotal” to “proof”? More studies? Or single case reports?
“In many cases the desire for amputation is related to broader psychological issues surrounding identity, especially the desire for a social identity as a disabled person” (p.434)
Many amputee wannabes do NOT want to be identified as disabled, they don’t want the social identity of being disabled.
This goes in the Impairment vs. Disability category. They want the impairment, they don’t want to be seen as having a disability. Many non-BIID amputees appear to dissociate themselves from the disability community, stating their amputation is not a disability.
“When Robert Smith performed his first healthy limb amputation in 1997, he had no published studies or body of medical opinion to suggest that the procedure would successfully treat his patient’s condition”(p.434)
But how many procedures were done that way? How many “discoveries” and treatment were derived from such trial & error?
“We believe that the proper response to people who wish to have healthy limbs amputated will not become clear until much more is known about the nature of the condition itself. In the meantime, resort to surgery should be strongly discouraged”(p.435)
In the meantime, people suffer.
