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The Harry Benjamin Minimum Standards of Care

A Brief Assessment of Their Clinical Value, Use and Misuse.

Sophia Siedlberg.

 

Issue 3
August 1998

 
The Minimum standards of care are a set of guidelines that are used by various clinics to assess patients suffering from gender dysphoria and to ensure that surgery is appropriate. However there are shortcomings within these guidelines that many patients feel unable to question. Thankfully more patient based consultation is apparently been undertaken and hopefully this will provide a basis for these shortcomings to be dealt with.

I have written my own criticisms partly from personal experience and partly from information I have gathered from other frames of reference. I have not mentioned any names of consultants or clinics with reference to specific examples of what I consider to be malpractice. This critique is not written to make accusations against specific individuals or clinics. However the cases I have quoted are well documented and known. This is just a document suggesting what can be done to ensure that the guidelines are consistently interpreted in all clinics and are also more responsive to the patients needs, which sadly, at present, are not.

The minimum standards seem to fail to recognise clinical need when the patient presents symptoms that are exaggerated. The best example I can put foreword to describe this anomaly is where the patient exhibits a resentful or pro-active anger towards being defined initially as the inappropriate sex rather than a passive sense of regret or depression in that situation.

A patient states that they were angry at the way they were born and it is automatically taken as a form of instability' On the other hand a patient who is uncertain about their feelings and may even not be certain that surgery will be beneficial will be deemed stable, and thus more likely to receive surgery.

I suspect the high pre and post operative suicide rates may in fact have more to do with this sort of assumption centred therapy' than any shortfalls on the patient's part. There is also evidence to suggest that in a climate of litigation and rationing, this situation is actually far worse than is acceptable. Yet no studies have been undertaken or statistics compiled to confirm or dispel this otherwise clearly evident state of affairs.

Even in cases where the consultant is sensitive to the patients needs, the major problem always seems to be this undefined and ambiguous interpretation of what the term unstable' means. Leaving the patient more fearful of not complying with the exact demands of the consultant, even if these may demands may seem unreasonable.

I suspect that the term needs to be clarified and certainly not applied to disassociative elements of gender dysphoria or the inevitable dysmorphobic feelings towards the inappropriate gender.

In most childhood cases the dysmorphic element is often clearly stated, "Why did God give me the wrong body?" is a statement often quoted, as are the occasional aggressive acts of tearing up the clothes of the inappropriate gender, outbursts of temper and occasional acts of self harm. The insensitive line of questioning that many consultants adopt can lead to similar outcomes, in both children and adults. Why is this not being addressed?

I would suggest that a Related instability' clause of some description needs to be introduced so as to ensure that any formal assessment will keep the whole presentation in context. Doing this could well save a lot of lives and avoid needless suicides. The other difficulty that not keeping things in context seems to present is where the patient may have a history of some bi-polar disorder, such as manic depression. They can sound very convincing' about their motives for wanting surgery during some clarity' phase of their disorder. If those convictions do not show in other mental states then the context has to be called into question. This could then be for example defined as an unrelated instability and assessed further, in that context. However at present the practice of not retaining any form of context or meaning when dealing with instability' serves no diagnostic purpose other than to potentially put the patient at risk.

Sadly it has become more evident that the ambiguous instability' (Often blamed on as of yet undefined genetic factors) has become more widely accepted within the mental health system generally. In numerous cases where someone has committed a murder or other extreme criminal act, there seems to be this unstable personality' tag applied to the individual concerned. The debate over biological and nurtured causes to all this seems to rage on in the law courts. So some gender dysphoric patients, by use of the undefined unstable personality' label are effectively put in similar categories as murderers. The aggressive, unrepentant gender dysphoric who refuses to accept any moral justification for being defined as the wrong sex, who argues that God, DNA or Nature is in the wrong without any sense of guilt over holding that view is seen as amoral, sociopathic or criminally insane. Killing another human being or assaulting them sexually, physically or mentally is a crime on the statute books. Arguing with the notions and paradigms about the natural order, political order or social order of things is not in a civilised society. The minimum standards of care, while not having these distinctions within their remit, need to be re-written so as to be crystal clear about what scientifically valid in terms of the consultant's opinions and the associated healthcare system's opinions as well as the patients opinions and what is not.

In some rare cases the patient may begin to exhibit sociopathic' tendencies, having been driven to such a state by the indifference of the system. There are cases of gender dysphorics in prison who having been denied surgery were driven to a point of despair where they took their frustrations out on someone else, or committed a criminal act of theft to obtain funding for surgery. This is not too uncommon, and despite that fact being distasteful to many Gender Dysphoric pressure groups, it still happens. I suspect that if it were openly stated that the way the minimum standards are applied were responsible for the majority of such cases then the truth would be better understood and easier to swallow. Also that the risk of such problems arising in the future would be minimised given better guidelines as to how to deal with cases where the condition has mentally aggressive or distressed overtones.

There is also the question of the consultant's ethical standards. There are certainly cases where consultants have been known to make unreasonable demands on the patient. I am aware of one case where a consultant often requested that the patient be photographed naked at each consultation, this running concurrently with abusive questioning of the patient and often withdrawal of medication on psychological grounds'. This case was actually televised as part of a documentary on transsexualism. With any other kind of patient, the consultant would have been disciplined. The consultant in question was not and he was allowed to continue with his disgusting practices until he died I believe.

The minimum standards don't seem to provide the patient with any form of protection whatsoever. If anything they breed an unhealthy climate that gives the consultant too much power to make unethical decisions and indulge in practices that in other circumstances would result on either the consultant being disciplined or subject to legal action. Thankfully the majority of consultants are responsible enough to not abuse their position, however given that in the past there have been many abuses there needs to be a more two sided approach taken in drawing up future guidelines.

Clinics perhaps also need to be subject to similar regulations. Again to quote from past cases, one clinic had been known to carry out surgery on a group of patients without a full assessment and to deny another group surgery altogether. These two distinct control groups' consisted of patients who I believe were unaware of this experimental study, (To assess the effects of referring unstable' patients for surgery.) If the patients did not know or consent to being part of such a study, why was this study allowed to continue? and why have the results of this study been integrated into the clinic's own assessment procedures?

The difficulty in general seems to be the climate of guilt, suspicion and prescriptive reasoning having been written into the minimum standards. One example of this that is blatantly stated is that the clinics and consultants fear referring a patient for surgery when they suspect the patent may sue them as a result. I find this difficult to understand given that if a patient is denied surgery, and injures themselves, they could theoretically claim that they were driven to it by the consultant or the clinic's practices, and thus litigate. Also some of the examples I have already quoted will inevitably result in litigation if they continue as I suspect they do.

While these shortcomings remain unchallenged the situation will inevitably get worse for current and future patients. There are positive sides to my argument however. In the two cases of malpractice I have quoted there were questions raised and some consultants had openly stated their dissatisfaction at the unethical practices of their colleagues. Had the standards been more universally interpreted and had they included safeguards for the patient's benefit, the more professional and ethical consultants involved in questioning past abuses would have at least been able to state a policy document or formal set of guidelines when raising their objections.

Hopefully future amendments will take account of the opinions of patients and consultants who put their patients first as opposed to institutional paradigms and the results of questionable studies. The minimum standards also seem to be irrelevant when trying to address issues of the patients ability to integrate as their adopted gender. A good example of this would be the unreasonable demand that a patient works for a given period of time and then they qualify' for surgery. This does not account for the prejudices of the employer, the difficulty someone with confusing documentation would have in getting work if they are already not employed and the problems encountered in some countries where the state refuses to recognise any gender fluidity in any individual.

Despite the fact that some consultants would be satisfied with say the patient studying at college or doing voluntary work, there is still a sense of pointless hoop jumping' for some patients and also a lack of emphasis on other issues, such as the safety of the medication etc.

There are some clinics that operate the minimum standards rather like a peer review system, where the emphasis is on the patient to prove' that they are psychologically the gender they are adopting. This is not an easy task, in a philosophical sense it is impossible without the patient resorting to self stereotyping into the adopted gender, as well as providing endless bits of paper and fulfilling what I feel may be unreasonable demands made by the consultant. I feel that this burden of proof needs to be looked at because in the case of most people, who are not gender dysphoric there is a constant pressure to prove' that they conform' to their gender when there are no physiological anomalies at all. By this I mean that if teenage girls are prepared to starve themselves, to be thin. Or that teenage boys are prepared to abuse steroid type drugs, again to prove their gender, and that this is considered unhealthy by the medical profession why then are these pressures placed on gender dysphorics?

I don't mean that taking hormones or having a healthy diet are not unreasonable, I mean that making the pressure to conform to the adopted gender so unrealistic that it is near impossible to forfill these expectations is in essence unhealthy.

I would like to conclude by suggesting that the following ideas are put forward when the minimum standards are reviewed and amended.

1: That there is some distinctions made about what is and what is not an unreasonable request or demand made by the consultant or the clinic.

2: That other disciplines besides psychiatry are involved, and that intersex conditions where gender dysphoria occur are recognised by the minimum standards as distinct from transsexualim. As many patients who are seeking help may have an intersexed medical history. Personally I would reccomend that such patients are reccomended on to a clinic that deals with IS conditions.

3: That the guidelines about fears of litigation on the part of the consultant are addressed, as things stand the patient is often faced with consultant paranoia when the patient does not fit some stereotypical transsexual' model. (this relates to the previous point.)

4: That the emphasis on confronting the patient is dramatically changed, to some patients this feels abusive and in some cases can have very bad consequences. Also that peer review style assessments are stopped and replaced with something less prescriptive and demanding.

5: That any study using a patient as a member of a control group or study group is done with the patients full and informed consent. There have been fatalities and thus working without the patients consent is unacceptable.

6: That a system of consent is involved, I would suggest that a consent form is signed before medication is prescribed and that all the risks are clearly spelt out. Also that no decision is made by the consultant without the patient again signing a consent form.

Finally that the patient is not subjected to treatments or lines of questioning and that the threat of treatment withdrawal is not present when a patient does not wish to undergo such therapies' if the said therapies are deemed unsuitable or unreasonable.

This may at first appear to be one sided in favour of the patient but if the guidelines about what is and what is not unreasonable in terms of the consultants demands are clear then such problems are less likely to arise.

TOP Web page copyright GENDYS Network. Text copyright of the author. 06.12.98 amended 19.06.01