Research Versus Assumption:
Adapting the Standards of Care to Address Individual Needs
Valerie Journeaux Harvey, Ph.D.
Rebecca Anne Allison, M.D.
C. Jacob Hale, Ph.D.
Wendi Miller, B.A.
1998: Christmas Remembered
1999: What's In A Date?
2000: Peace On Earth
2001: Dark Days
2002: The Little Things
2003: Shop Till You Drop
2005: What Are You Waiting For?
2006: Peace In Our Heart
Believing The Lie
Purpose: To determine the basis for specific recommendations in the Standards of Care. Are these recommendations, particularly the time requirements, based on analysis of properly collected research data, or are they a continuation of arbitrary parameters established at a time when knowledge of the transition process was much less advanced? Research-based criteria may form a reference model for transition that will bring greater benefit and less harm to all persons treated under the Standards of Care.
The HBIGDA Standards of Care (SOC) address the health care needs of gender dysphoric persons seeking sex reassignment. They are designed to protect the welfare of such persons, as well as to protect the process through which medical interventions are available. Without the SOC, certain individuals might obtain medical or surgical treatment inappropriate for their circumstances. Such inappropriate treatment would be harmful to the providers of health care, through adverse publicity, legal actions, or both. The result would be reduced availability of services for other persons who legitimately need such services.
The SOC are a complex endeavor, dealing with multiple disciplines and challenging social and legal circumstances. The ideals implicit in their formation are not necessarily manifest in their implementation, either for individuals or for the community in need of protection. Indeed the needs of the individual may be overlooked in applying the SOC to the community at large.
Over the passage of time, presumptions, biases, and arbitrarily assigned criteria become regarded as fact, even without appropriate research to support their validity. As criteria become institutionalized in such contexts, the risk increases that the decision making autonomy of the individual will be compromised. In place of recognition of, and response to, individual concerns, professionals may then enforce requirements which are not germane to the individual giving care. Professional inertia may thus substitute for judgment of individual needs and circumstances.
Certainly the SOC cannot expect to solve all problems in a field so complex, stigmatized, and beset with legal constraints. However, the SOC can, and should, be based as much as possible on sound principles of investigation and research. In this way the principles and standards will be informed by evidence and accumulated experience.
This presentation assumes that health care professionals involved in the sex reassignment process possess highly specialized skills, good will, and positive, caring intentions. We further assume the sincere, strong interest in Standards of Care which guide the transition process in a way that will truly meet the needs of each individual.
The present criteria of the SOC, which emphasize the Diagnostic and Statistical Manual (DSM) diagnosis of gender dysphoria, have been challenged with respect to the designation of fixed waiting periods before treatment goals can be achieved. It is the intent of this presentation to encourage more practical, flexible, and responsive criteria for evaluation and decision making. Such an improvement in criteria will not only help assure better care for individuals, but will strengthen the entire system of delivery of medical and psychological services. Improvement will also assure clearer support and reduced risk for providers seeking to accommodate individual needs of patients and clients.
The circumstances of the population to be served will determine the effectiveness of service, and any characterization of those circumstances should be subject to careful scrutiny. Individual circumstances may dictate that such circumstances should be modified.
Great significance has been attached to Principle 3 in Section 4.1.1 of the SOC, which states that "published and unpublished case histories are known in which the decision to undergo hormonal and surgical sex reassignment was, after the fact, regretted; and the final result of such prcedures proved to be psychologically debilitating to the patients." No doubt this has indeed occurred. Surely great significance should also be attached to case histories in which patients suffer severe adverse effects, even though unintentional, through being forced to follow the strict requirements derived from the SOC. For example, case histories indicate the following:
(1) Many gender dysphoric persons are destitute, perhaps sometimes as a result of implementation of the SOC. Many are engaged in sex work, including a significant number at high risk for sexually transmitted disease or physical abuse. A disproportionate number of this group are racial and ethnic minorities. The process of transition poses risks to employment and career. For some persons, the requirements of the SOC may have adversely affected employability. For example, being required to live in the desired gender role before hormonal treatment has produced desirable modification of appearance may make a person less likely to find and keep a job.
A rigid sequencing of a prescribed transition process, with the requirement for spending a definite period of time in each phase of the process, contributes to the difficulty of maintaining employment and employability. One original aim of the sex reassignment process was to alleviate the suffering associated with gender dysphoria. To what extent is this aim being achieved?
(2) The SOC as presently formulated are intolerant of individual variations in the transition process. Differences in needs of male-to-female and female-to-male individuals; persons who intend to transition to live full time in their desired gender without sex reassignment surgery; and persons who will retain post-transition what was once a heterosexual orientation, now homosexual, are not addressed. Furthermore, differences in financial ability to afford medical and surgical treatment are not recognized.
(3) While the SOC address ways of preventing abuse in elective care, and concomitantly define appropriate care, they do not address the variation in health care practices in different countries. In some countries, persons whose care has been duly prescribed under the SOC are subject to capricious and contradictory forms of treatment. Particularly at risk are those whose autonomy in health care decisions is constrained through admission or commitment to a health care facility, or through incarceration. (Of course the population of sex workers described above are particularly vulnerable to arbitrary interrruption of treatment without recourse.) The SOC do not address the need to inform medical personnel responsible for the care of such persons of these persons' need for continued, uninterrupted care.
New, and continuing, research is certainly needed. Initially, such research will likely be in the form of retrospective case review and case-control studies. The relatively small numbers of persons going through sex reassignment, and the nature of the therapeutic process, present a challenge to designing prospective, randomized trials of statistical significance in the near future. Case studies are therefore proposed:
(1) To test assumptions on which the SOC are based. For example, are the designated waiting periods (including the full time living experience) beneficial, harmful, or neutral?
(2) To define the range of needs and resources of the individuals entering the sex reassignment process. This may allow needed modifications in the SOC for different individuals.
(3) To determine the true state of distress of gender dysphoric persons and populations, allowing those persons input in the description. To ascertain whether any aspects of implementation of the SOC may actually worsen conditions for certain individuals or populations. Findings indicating negative impacts of the SOC could lead to future revisions.
(4) To gather more information on behavior patterns which may affect the evaluation of an individual by a clinical behavioral specialist, allowing for an individualization of the transition process according to specific needs and providing clinical behavioral specialists with a wider range of strategies for conducting evaluations.
In conclusion, the Revised Standards of Care which are about to be brought before this Symposium reflect the experiences of many providers of care for transgendered persons, but it remains to be seen whether they will retain their relevance for the future. Transgender health care is dynamic and constantly in a state of change. Medical and surgical treatment becomes more sophisticated. Transgendered consumers, largely as a result of Internet communication, become much better informed. They will no longer accept without question Standards which are not based on outcomes data.
We propose an International Transgender Health Care Database which will be a repository of such outcomes data. Providers may voluntarily contribute the results of their treatment of transgendered patients: psychological, medical, surgical. Questionnaires and criteria can be developed to standardize the data to give it equal significance from one provider to another. We also recommend that strategies and procedures be devised to solicit and receive, from transgendered persons, voluntary case study information and offers to participate in studies. Such a process might facilitate contact for research with individuals whose condition and circumstances might otherwise remain unknown.
We propose to assist in development of these questionnaires and criteria, and to receive and collate the outcomes data, disseminating the results periodically to the HBIGDA membership to aid in future revisions to the SOC which will then be based less on assumptions and inertia, and more on research-based criteria.
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