Tuesday, June 10, 2014

It's Not Just About Trust

One of my news feeds dropped the following article this morning:  "Gender Transition isn't a Whim, so Why the Mistrust?".

After reading through it, the article is more or less the standard "I know I need this surgery, so why can't I get it on demand?" argument.

To a certain extent, I am sympathetic to this.  People who are transsexual usually know from an incredibly early age that they are, and what they need.  This is beyond question in my mind.

The notion of informed consent is pervasive in Western Medicine, and in general terms it works fairly well.  But, informed consent is a point solution to a specific problem.  Informed consent does tackle the understanding of what the effects of a specific form of medical intervention are.  Usually in terms of physiological issues, potential complications and so on.
When it comes to gender transitions, trans patients are often inappropriately held to higher account when compared to people opting for other kinds of medical care. Standards of care are effectively constructed on the assumption that trans patients are less able to provide informed consent. This is a serious problem. Beneath it lies the wider distrust society still has in why people want to transition and in whether they know their own mind. 
Typically, the standard for surgeries — from cosmetic plastic surgery to vasectomy, tubal ligation, and abortion — is simply informed consent. A doctor or surgeon talks with the patient and explains what they expect to happen, along with all of the risks and benefits and the relative likelihoods of them happening. This process also involves explaining available alternatives and the risks or benefits of doing nothing. After the patient confirms that they understand all of this, the doctor is said to have received informed consent for the procedure. 
A patient is required to be competent to make this decision and if they are unable to understand for some reason – if they are too young for example – another person, such as a parent, may be required to step in.
It took me a few minutes to figure out what bugs me about this claim.  The issue is not merely that it is a case of "informed consent" for Gender Reassignment Surgery (GRS), but rather that gender transition is a complex process that encompasses a wide range of actions and treatments.

Any one step of transition requires a degree of informed consent.  For example, starting cross-sex hormone treatment requires that the doctor and patient have a clear, coherent discussion of the effects of hormones - both short and long term, as well as possible side effects.  However, taking hormones is merely a facilitating step in the process of transitioning across genders.  One step of many that a patient is ultimately undertaking.

Gender transition is not one step.  Hormones and GRS are the tangible markers that most people can grasp.  What is much harder to understand is the long term process of social transition.  For some, it is an easy, almost seamless process, for others it can be much more difficult to make the adaptations they desire.
And it’s the gatekeeper model of healthcare in the US, UK and many other jurisdictions, typically involving a psychologist of psychiatrist, that creates an additional barrier. Although some (private) clinics in the US have finally begun to adopt a model where all that’s required for a patient to begin hormone therapy is their informed consent, genital surgery still requires psychologist or psychiatrist approval. Many surgeons require two letters — as set out in WPATH’s standards — at least one of which must be from a psychologist or psychiatrist with a PhD. 
In reality, the requirements for trans patients are even more stringent: in order to be permitted genital surgery – even if the patient elects to pay for it – patients have to demonstrate that they’ve been living in their transitioned gender role for a minimum of a year.
 I can appreciate the perception that there is a "gatekeeper" mentality in some areas.  Let's face it, your average GP or Endocrinologist simply doesn't have a lot of training in dealing with cross-gender patients, and as a result may feel profoundly uncomfortable providing treatment without the input of a psychologist who specializes in such matters.

Western Medicine has become very "siloed" in the last fifty years or so.  Most GPs don't have the tools to make specialized diagnosis and refer patients to specialists all the time.  Specialists are often so focused in their own domain that they really do not feel comfortable making assessments outside of that domain.

To some extent this can be addressed by training, but it doesn't necessarily resolve the ethical and practice guidelines considerations that all of these professionals are bound by.  It would be very nice indeed if there was more uniformity in this regard, but there isn't.  Even more unfortunate is that in some localities, physicians have been known to turn trans patients away on the basis of personal beliefs on the matter rather than practical medical guidance.

Is it "gatekeeping" for a GP to say that they want an assessment from a psychologist before providing hormone therapy?  If we are talking about a situation where the psychologist is trying to make the availability of the referral letter contingent on a long term therapeutic relationship, one might be a little bit concerned.

However, the WPATH SOC v7 addresses this quite explicitly:
The SOC do not recommend a minimum number of psychotherapy sessions prior to hormone therapy or surgery. The reasons for this are multifaceted (Lev, 2009). First, a minimum number of sessions tends to be construed as a hurdle, which discourages the genuine opportunity for personal growth. Second, mental health professionals can offer important support to clients throughout all phases of exploration of gender identity, gender expression, and possible transition – not just prior to any possible medical interventions. Third, clients differ in their abilities to attain similar goals in a specified time period.  
Further, the SOC sets out fairly clearly the basic criteria for GRS referral:
Criteria for metoidioplasty or phalloplasty in FtM patients and for vaginoplasty in MtF patients: 
1.  Persistent, well documented gender dysphoria; 
2.  Capacity to make a fully informed decision and to consent for treatment; 
3.  Age of majority in a given country; 
4.  If significant medical or mental health concerns are present, they must be well controlled; 
5.  12 continuous months of hormone therapy as appropriate to the patient’s gender goals (un- less the patient has a medical contraindication or is otherwise unable or unwilling to take hormones). 
6.  12 continuous months of living in a gender role that is congruent with their gender identity;
Although not an explicit criterion, it is recommended that these patients also have regular visits with a mental health or other medical professional. 
Rationale for a preoperative, 12-month experience of living in an identity-congruent gender role: 
The criterion noted above for some types of genital surgeries – i.e., that patients engage in 12 continuous months of living in a gender role that is congruent with their gender identity – is based on expert clinical consensus that this experience provides ample opportunity for patients to experience and socially adjust in their desired gender role, before undergoing irreversible surgery. As noted in section VII, the social aspects of changing one’s gender role are usually challenging – often more so than the physical aspects. Changing gender role can have profound personal and social consequences, and the decision to do so should include an awareness of what the familial, interpersonal, educational, vocational, economic, and legal challenges are likely to be, so that people can function successfully in their gender role. Support from a qualified mental health professional and from peers can be invaluable in ensuring a successful gender role adaptation (Bockting, 2008). 
The duration of 12 months allows for a range of different life experiences and events that may occur throughout the year (e.g., family events, holidays, vacations, season-specific work or school experiences). During this time, patients should present consistently, on a day-to-day basis and across all settings of life, in their desired gender role. This includes coming out to partners, family, friends, and community members (e.g., at school, work, other settings). 
Health professionals should clearly document a patient’s experience in the gender role in the medical chart, including the start date of living full time for those who are preparing for genital surgery. In some situations, if needed, health professionals may request verification that this criterion has been fulfilled: They may communicate with individuals who have related to the patient in an identity-congruent gender role, or request documentation of a legal name and/or gender marker change, if applicable. *Emphasis Added
Ms. McKinnon goes on to critique these requirements as follows:

More explicitly, such policies aim to force patients to experience and adjust to life in their transitioned gender role before providing treatment. The implied rationale, then, is that without living in your transitioned gender role, which may include changing your name or the style of clothes you wear, you can’t really know whether you want the surgery – and therefore can’t really provide informed consent. This “real life test”, as it very recently used to be called, is for the patient’s own good; if someone lived through the proscribed period of time and still wanted surgery, then the gatekeepers could be confident that surgery would be in the patient’s best interest. 
This is deeply problematic, though. This isn’t an informed consent model of healthcare, which is the universal model (in western cultures) for everything except healthcare for transgender people.
Here is where I beg to differ with Ms. McKinnon's assessment of the situation.  She seems to have conflated GRS with gender transition.  The two are NOT the same thing, although they are closely related to each other.  The claim being made is fundamentally that as long as the patient is able to give "informed consent" to GRS, they should be able to have access to it.

Superficially, this seems almost reasonable.  However, there are two enormous "buts" that must be discussed here.

First, unlike every other surgical procedure out there, GRS unequivocally changes the patient's status in many different aspects of their life, not merely in the relative privacy of our bedrooms.  As part of a broader picture of gender transition, it also affects the patient's social context and status, friendships, workplace and goodness knows what else.  Informed consent for GRS has to account for these realities somehow.

Second, we know that there are those who attempt to gain access to GRS who either are unsuitable candidates, or have not yet adapted to their chosen gender role in society.  Whether we are talking about characters like Walt Heyer (how he ever got approval for GRS is beyond me, but that was the early 1980s, a different era), or the person who early in their journey decides that they desperately need surgery *now* (I've seen it, and I personally have talked more than one such person out of their tree - at least half of them backed away from transition after that, and I respect them for having the strength and wisdom to recognize when to step away from the precipice)

One of the things that makes gender transition quite different from other conditions that doctors deal with is that it lacks clear diagnostic criteria that they can examine objectively.  In fact, there are no physiological symptoms that they can examine directly.  Is it unreasonable that the surgeons insist upon an objective third party assessment?

We also cannot ignore the political dimension of those who choose GRS and then discover that they made an awful mistake.  People like Mr. Heyer run around spouting a pack of lies a mile deep about about GRS, and ultimately make it more difficult for the rest of the trans* community to access the treatment they need.  This cannot be ignored, nor can we ignore the consequences for both transsexuals seeking treatment as well as the practitioners that they rely on.

But to argue that this contravenes the notion of "informed consent" is to assume that "informed consent" is a one way street.  It is not.  Informed Consent merely means that the practitioner has discussed with you the treatment that is proposed and its consequences.  In general, it starts from the presupposition that the practitioner has performed sufficient diagnostic assessment to be confident that this treatment will address the diagnosed condition, something which few surgeons will feel that they have the appropriate diagnostic skills for in the case of GRS.

What has changed is that although a psychologist's assessment is needed for a surgery referral, there is no explicit requirement for a long term therapeutic relationship.  (This didn't really exist in the previous SOC, but the current SOC is much clearer about it)

In short, Ms. McKinnon's position is based in large part on a misunderstanding of the nature of the WPATH SOC, and even more troublingly a failure to understand the ethical issues that a surgeon faces in providing GRS.  She tries to draw analogies with other "on demand" surgical options, but fails to acknowledge the unique aspects of gender transition in general.  No other medical process has such a profound impact on the life of the patient.

To proceed with caution has merits for both practitioners and patients in the long run.  A vasectomy can be reversed, a woman who has an abortion has the opportunity to become pregnant again.  gender transition is a process that is far more broad in its impact than just the patient.  Their social context changes, the people around the patient are very directly impacted, and so on.  "Undoing" all of that is difficult to say the least - at least as difficult as transition itself, and then there is the physical impossibility of "undoing" GRS.  To look at one part of the process - surgery - apart from all of the other aspects involved is incredibly short-sighted.

It may be frustrating, but a successful gender transition really does require many experts to contribute their expertise.  I would love to argue in favour of more open access, but the potential for serious harm to happen to someone whose motives for transition are unclear or they are ill-prepared for it is far greater than the implications of having a few cross checks in the system.  The world needs fewer Walt Heyers, not more.


Anonymous said...

The thing about gatekeeperism is that it varies from region to region. In Alberta, the system was actually not too bad until 2008ish, when the waiting list to first see a therapist grew to 18 months (and then dropped for 4-5 years when GRS was delisted, before jumping to almost that level once again). In Newfoundland, the process is to go on a lengthy waiting list to see a therapist in Toronto and then spend a lot on travel for every visit.

You wrote:
"Is it "gatekeeping" for a GP to say that they want an assessment from a psychologist before providing hormone therapy...?"

It gets that way, yes. Because in an area where every GP wants HRT to be administered by an endo, and every endo wants a letter from a therapist first, and every therapist has a 2-year waiting list, that's a system of unreasonable bureaucracy for something that any family doc should be capable of monitoring and can find ample guidance (Sherbourne Health Centre, Vancouver Coastal Health...) if they want it, for starting.

I understand your point about the time needed, and concern about the informed consent model as accelerating a transition process to the point where a person doesn't get a chance to go through the psychological adjustment of transition. But I do think IC has its virtues, and in some parts of the country / world would be far better than what they have.

MgS said...

Hmmm ... seems to me that the "gatekeeping" you are describing is actually bottlenecks that result from inadequate resources.

In other words, the problem isn't so much the SOC itself, but rather a series of failures on the part of provinces to adequately support the health care systems.

I know in AB, the situation is particularly problematic because AHCIP isn't willing to deal with anyone except a couple of psychiatrists. This is more of a case of bureaucracy creating problems rather than the principles in the SOC.

In a larger sense, I think that you have to look at the notion of IC as it applies not just to individual procedures, but to the picture of the overall process as well. Gender Transition is not a singular procedure, but a rather complex process made up of many processes and procedures. IC should be an active part all the way through.