Seeking a Gendered Adolescence: Legal and Ethical Problems of Puberty Suppression among Adolescents with Gender Dysphoria
|CATHERINE DOWNS & STEPHEN WHITTLE, Manchester Metropolitan University,
Changes in attitudes have encouraged increasing numbers of young people to identify as gender-dysphoric.1 In order to reduce the distress caused by the onset of puberty, young people with gender-dysphoria are increasingly seeking pubertal-suppression therapy. Health care professionals must then confront a variety of clinical, ethical and legal issues. This chapter examines three therapeutic approaches, to adolescent gender dysphoria, and, in particular, the responsibilities of health care professionals towards young people requesting pubertal-suppression therapy.
Psychological, Social and Therapeutic Issues
In typically shocked tones, the Sunday Times recently reported that '[c]hildren as young as 14 are receiving sex change treatment on the National Health Service.' The article noted an estimated 600 girls and boys in Britain - some as young as seven - who suffer from gender identity disorders. The disclosure that growing numbers of children were seeking treatment for gender dysphoria had sparked intense debate among medical specialists: 'While some psychiatrists believe children should be helped to change sex early, others insist that they should only take that decision after reaching maturity.' The article cited the views of one psychiatrist, Russell Reid, who believes that children as young as 13 should be offered preliminary drug treatment to prevent puberty. Reid's approach contrasted with that of Dominic Di Cegli, who runs the Portman Gender Identity Development Clinic. Di Cegli admitted that up to one in four of the teenagers who, at 14, seemed convinced of their desire to change sex, would later decide against the change.2
Such reports must always be read with caution. Nevertheless, the last two or three years have seen a rise in the number of adolescent children who, with the support and guidance of their parents, have sought medical help to deal with perceived gender dysphoria. These young people are increasingly expressing a desire for medical intervention, in the short term, for the following purposes:
In the United Kingdom, awareness of gender identity disorders has increased in recent years. There is a growing understanding that gender identity disorders can be experienced by anyone, from any social group, and at any age. Much of this awareness has been achieved through the news coverage of recent campaigns undertaken by groups such as Press For Change and the Gender Trust. There has also been increased access to resources and information through help lines and websites such as those of the Gender Trust.
For young people, there have been three significant developments. First, the creation, in 1989, of a clinic providing services for young people with gender dysphoria, initially located at St George's Hospital in London, and led by Dr. Di Cegli.3 Second, in 1996, British television's Channel 4 screened a two-part film in a series entitled The Decision .4 The film concerned three female-to-male transsexuals and their trip to the Netherlands to learn about treatment and services provided by the Gender Clinic at the Free University of Amsterdam. It included a young female-to-male transsexual, 'Fredd,' aged 13, showing his parents as they sought to provide Fredd with support through his adolescence. It also showed several young female-to-male transsexuals who had begun pubertal-suppression treatment at the ages of 13 and 14 in order to prevent the emergence of unwanted secondary sexual characteristics. By the age of 16 or 17, these young people went on to begin active hormone therapy in order to change their secondary sexual characteristics to those of their chosen gender role. They commenced surgical gender reassignment surgery from the age of 18. The film portrayed them as content and handsome young men. A third important event has been the creation of a support group, Mermaids, for children and teenagers with gender identity disorders. The group provides support for their families, their friends, and for professionals who work with them. It has facilitated networking among young people and their families, helping them to understand that their experiences are not unique. Mermaids has also enabled young people and their parents to compare the various approaches taken by doctors in this field. As a result of these three developments, gender-dysphoric adolescents increasingly form part of a well-informed patient group who know what they are seeking before attending a clinic. These patients enjoy the support of their parents in their request for a plan of medical intervention which will culminate in gender reassignment.
Generally, clinicians treating gender-dysphoric youth define their therapeutic task in terms of preventing later problems through early intervention. They can achieve this aim by developing a framework in which the family, the young person, and other interested parties (for example, the school) can find ways of understanding the child's behaviour so that it does not pose an excessive burden to the child or the family.5 The fundamental question for the clinician is: what is the right treatment to give a child with such a syndrome? This question does not merely arise from the clinician's duty to care for the patient. Due to the many social stigmas sti1l associated with gender dysphoria and gender reassignment, clinicians may also find themselves facing a personal crisis as to the best treatment for the young person.
There are three possible methods of treating young people with gender dysphoria, which may be categorised as follows (although they may be combined):
While some clinicians may still attempt to 'cure' patients with gender dysphoria, this approach is becoming outmoded. In the case of adults requesting gender reassignment treatment, there is increasing awareness that 'it is exclusively and primarily the person himself or herself who will decide for sex reassignment.'6 Thus, while clinicians can participate in the diagnosis of gender dysphoria, it is the patient who decides whether it is appropriate to proceed to full gender reassignment. The primary role of therapists and counsellors is to ensure that the patient is fully informed of the possibilities and risks of gender reassignment, so that they may make an informed decision.
When considering young people, however, some clinicians feel that the role of the therapist is not merely to provide information, nor merely to provide liaison psychiatric services to deal with the social stigmatisation processes that are linked with cross-gender behaviour. They feel they have a role in preventing transsexualism in adulthood. For Zucker and Bradley, this approach is manifestly valid and ethical, thus justifying therapeutic intervention,7 despite their observation, in the same book, that treatment to prevent adult homosexuality is more problematical. They note the absence of studies demonstrating that therapeutic intervention in childhood can alter the developmental path to transsexualism or homosexuality. Yet they do not equate the two conditions with respect to the clinician's therapeutic goal.
This inconsistency sums up the problem faced by young people seeking intervention from clinics. Clinicians are gatekeepers to the hormonal and surgical reassignment sought by many young people with gender dysphoria. While the adult transsexual is, at least nowadays, acknowledged as being someone who decides whether or not to undergo reassignment, young people are faced with a clinical situation in which doctors still feel a cultural imperative to 'cure' them. A significant amount of their clinic experience (and of the experience of parents who accompany them) is perceived as 'stalling tactics' and even 'lies' on the part of doctors. Such delays are perceived as a tactic for delaying the individual's quest for active treatment leading to gender reassignment whilst the doctors instead seek to cure them.8 Such stalling is also experienced even when clinicians are aware of the futility of attempting to cure their patients and instead are seeking to help with the social problems associated with gender identity problems. The adolescents and their parents suffer considerable distress as puberty advances and nothing appears to be happening to prevent the inevitable onset of adult transsexualism and its associated problems.
It is acknowledged that hormonal or other medical interventions are inappropriate in pre-pubertal children.9 Nevertheless, there may be medical options for young people under the age of majority. By adopting the second possible method of treatment - because adolescence is viewed as a time when many aspects of identity are still being developed - professionals often fear that 'interference' with gender identity formation and gender role performance may cause more problems than it can resolve.10 The doctor decides that gender-dysphoric adolescents are 'simply not old enough' to make up their own minds about whether pubertal-suppression or active hormone therapy would be appropriate. These adolescents are deemed unable to consent to such treatment until they are at least 18 years old. We will see that this is a problematical approach, in view of young persons' rights to consent to treatment.
The third method, in the cases of those children who have shown consistent and extreme patterns of gender dysphoria with strong cross-gender identification, provides an alternative that leads to hormonal and gender reassignment in early adulthood. Some early form of active intervention can help prevent feelings of hopelessness for young persons who must wait for the onset of adulthood in order to undertake full gender reassignment. It also improves the prospects of an enhanced physical appearance in the new gender role, and prevents the onset of permanent secondary sexual characteristics, such as a deep voice in male-to-female transsexuals. In numerous follow-up studies, it has been shown that the earlier gender reassignment is commenced, the greater the chance of a favourable post-operative outcome.11 In the Amsterdam clinic, this approach is offered only to young people who are determined to be psychologically stable, to function well with family and social support, and to have a lifelong, extreme and complete cross-gender identification. The initial treatment afforded to an adolescent who meets these requirements involves providing pubertal-suppression hormones which block the actions of sex steroids in a reversible manner, followed by full non-reversible hormone treatment at the age of 18. If in the meantime, the patients have concluded a favourable 'real-life test' (i.e. lived in their new gender role successfully and happily for at least one year), then consideration is given to requests for surgical reassignment. This model of treatment has been tried with several adolescents in the Gender Clinic of the Free University Hospital in Amsterdam, with reported success. However, there have been calls for more prospective and follow-up studies.12
Legal and Ethical Problems
Which legal and ethical questions, then, should doctors consider when choosing among these three methods- In the event that the physician should choose either to attempt a 'cure' of the patient or to delay active treatment, what are the legal consequences if patients or their families choose, at some later stage, to sue the clinician because they deem the treatment to have caused unnecessary suffering? Such a scenario is entirely plausible in a world where hormonal and surgical gender reassignment is increasingly accepted as the only solution to transsexuals' plight, and in which the medical profession's own follow-up studies have shown a high success rate (97% to 99%) in the case of persons reassigned.13 Where young people, with the support of their parents, seek active intervention, doctors who choose either of the first two routes may be subject to litigation, unless they have clarified the questions regarding clinical judgement leading to refusal. In some situations, for example, female-to-male transsexuals may decide that, because of a refusal to treat them when they were younger, they were forced to undergo unnecessary breast reduction surgery, and thus deserve compensation for their pain and suffering. Similarly, male-to-female transsexuals may sue for the costs incurred in obtaining beard reduction through electrolysis. Parents may even sue if their children were among the small percentage of untreated young people who commit suicide. Doctors may then be called upon to justify the action they took.
Of particular concern is the view that people aged 14 to 17 are not old enough to decide whether they are transsexual. In our opinion, this view may be legally insufficient as a basis for withholding pubertal-suppression treatment. The dilemmas confronting doctors in these circumstances are undoubtedly difficult, as the patient is desperate and social pressure is great. It is precisely for these reasons, however, that clinicians must consider carefully the problems involved in providing, or refusing to provide, pubertal-suppression treatment and for ensuring that they have not only safeguarded their patient's best interests, but also have made clinical judgements of the highest standards.
The Problem of Consent
In the United Kingdom, children under 18 are generally deemed incapable of giving consent to treatment because of their minority. Health professionals must rely on consent being given by their parents or under the inherent jurisdiction of a court, following an application. In the case of older children who are still under 18, there are two main ways in which they, if they have full mental capacity, can consent to treatment. For the age group of 16 to 18, section 8 (1) of the Family Law Reform Act 1969 lowers the age at which an individual can consent to treatment, from 18 to 16. For the purposes of consent to medical treatment, consent by a minor aged 16 or above 'shall be as effective as it would be if he were of full age.' The minor can only consent to certain kinds of treatment, namely surgical, medical, or dental treatment including, according to sub-section (2) diagnostic and ancillary procedures.
The sub-sections do not make clear whether the treatment must only be therapeutic or whether it also includes non-therapeutic treatment, which is arguably the definition of treatment for transsexuals.14 The only case in which section 8 of the Family Law Reform Act has been discussed is Re W.15 In this case, the suggestion by Nolan L.J. was that the phrase 'surgical medical or dental treatment' in the Act should be construed in a narrow sense because of the need in sub-section 2 to elaborate by including, for clarification, diagnostic and ancillary procedures. If section 8 is limited by this narrow approach to therapeutic treatment, then there may be restrictions on the treatment to which those aged 16 to 18 can consent. It is unclear, however, whether this restrictive interpretation is correct. These patients may still be able to give effective consent under section 8.
Minors under the age of 16 can consent to treatment following the decision in Gillick v. West Norfolk and Wisbech Area Health Authority. The court in this case held that children under 16 can give valid consent to medical treatment without parental knowledge or consent, provided that the doctor treating them is satisfied that they understand the nature of the proposed treatment.16 There are no clear-cut grounds as to the age at which this independent right comes into existence. The test put forward by Lord Scarman is that a child must have 'sufficient understanding and intelligence to enable him or her to understand fully what is proposed.'17 There are problems in putting the Gillick test into practice because of its subjectivity and the lack of clarity in the House of Lords decision as to the actual test to be applied. Lord Scarman indicated (at least in relation to contraceptive treatment, although the test must apply to other kinds of treatment) that the minor must understand not only the nature of the medical advice regarding the treatment, but must also be mature and understand the family, moral and social issues involved. Lord Fraser indicated that the patient must be capable of understanding the doctor's advice. These tests are often hard to satisfy. Adults of full capacity do not have to show the same level of understanding when they consent to treatment.
It is possible, then, that if the patients are 16 or older, they can give consent to treatment in exercise of their statutory right under the Family Law Reform Act 1969. If they are under 16, they may be 'Gillick competent' and still be able to give effective consent to treatment under the common law. Even if they are under 16 and not assessed as Gillick competent, their parents can give consent to treatment on their behalf. Lack of parental consent should not affect the validity of the consent given by the minor either under statute or the Gillick test. Difficulties with regard to the issue of consent will only arise in cases where the patients' parents do not consent to the treatment and the patient is under 16 and not assessed as being Gillick competent. In most of the cases involving gender-dysphoric adolescents, the parents of these patients support their children's desire for treatment. In many cases, they are prepared to pay for the treatment abroad, if necessary.
Even if consent to treatment is not a real problem, decisions about whether to treat at all, and about the kind of treatment to be administered, are difficult. They depend on the doctor's professional judgment. In Re J it was held that doctors can never be forced by the courts to administer a particular kind of treatment contrary to their professional clinical judgment.18 In this case, as a result of an accident, a baby had become acutely handicapped. The medical staff did not want to place the baby on a ventilator, but the mother did. The mother tried unsuccessfully to force the medical staff to give her baby the treatment she wanted, even though she had a medical expert who supported giving that treatment. Lord Donaldson believed that doctors should be free to treat in accordance with their best clinical judgment. For the court to intervene 'would require the practitioner to act contrary to the fundamental duty which he owed to his patient... which was to treat the patient in accordance with his own best clinical judgment.'19
In contrast, the Court of Appeal has recently decided against overriding the decision of a mother concerning medical treatment for her child. In Re T the mother of a small child did not want him to undergo a liver transplant even though medical opinion favoured such treatment. This involved a slightly different issue, as the mother did not want access to treatment. Rather, she wanted to be able to refuse a certain kind of treatment on behalf of her child. Lord Justice Butler-Sloss held that the child's welfare must be the paramount consideration, even if, in this particularly acute case, that meant allowing the mother to decide on her child's future treatment rather than automatically making a decision to prolong life.20 This decision affirms the welfare of the child test. If followed it may require greater recognition of parents' wishes. In general, however, patients must largely depend on whether a doctor is willing to administer a certain kind of treatment. The courts do not usual1y intervene to force doctors to administer any particular treatment, or to administer one form of treatment in preference to another, in any way that would disregard of the wishes of the patients or their parents.
In cases of gender-dysphoric adolescents, the problem is not access to treatment per se. but access to a specific form of treatment. Specific forms of treatment must be recommended and administered by the patient's doctor. If a doctor refuses to provide treatment that a patient wants, the patient may seek a second opinion. If there is no doctor available in this country who is prepared to treat gender-dysphoric adolescents by the third method, the patients are left with no choice about their treatment. There are doctors in the Netherlands, however, who may be willing to administer the treatment. Patients may be able to challenge the clinical judgment of doctors in this country who are unwilling to provide such treatment when colleagues abroad have offered it for a number of years.
Patients seeking to establish negligence must show that their doctor owes them a duty of care. Once a patient has been accepted (in the case of the specialist) or has been registered with a general practitioner and sought treatment, this duty of care is established. The law of negligence requires that health care professionals must exercise reasonable care in the performance of their duties. The standards expected of a reasonable professional were set forth in Bolam v. Friern HMC. The professional is expected 'to act in accordance with a practice accepted as proper by a responsible body of medical men ski1Ied in that particular art.' 21
If there are different views about the appropriate mode of treatment, health care professionals will not be condemned by acting in one way, rather than another, provided that they can justify the approach they have taken.22 The practice adopted must be accepted as proper by a body of skilled and experienced doetors.23 While the paternalism of the Bolam test can be criticised for allowing doctors to set the standard of treatment that they are to give, it still sets a high standard. Doctors needing to show standards of excellence within their field of specialisation must demonstrate an awareness of current practices. That showing may include research and work conducted outside the United Kingdom. The introduction of evidence-based medicine, which requires compliance with treatment on the basis of research evidence, may further make it difficult to justify failing to follow up-to-date procedures and treatments which are supported by research findings. Doctors may be justifiably cautious in providing new forms of treatment; however, if a new approach to treatment is supported by research, it may be difficult to justify not following this new approach.
In the Netherlands, the different and novel kind of treatment for gender-dysphoric adolescents has been shown to be successful over a number of years in cases that have been carefully selected on the basis of prognosis and individual circumstances.24 In the United Kingdom actions in negligence could be taken if a doctor or National Health Service (NHS) Trust had failed to provide the most effective and up-to-date treatment. Patients suing for compensation for medical negligence would have to establish causation. They would have to produce evidence that failure to treat in a way that they allege would have been more effective has caused or contributed to their medical condition and thus caused them loss. This causation may be difficult to establish. However, doctors should be aware of the possibility of legal actions for negligence, and must ensure that they have considered the most appropriate treatment for each patient.
Hospital ethics committees may also have a role to play in the decision-making process concerning available treatment. In R v. Ethical Committee of St Mary's ex parte Harriott, the judge found that the role of an ethics committee is not to decide on particular cases, but to provide a forum for discussion amongst professionals in an informal context. The only situation in which the advice given by the ethics committee would be subject to legal scrutiny would be if it were to advise that a section of the population should be refused treatment based on, for example, race or religion.25 In cases of treatment for gender-dysphoric adolescents, ethics committees must ensure that doctors can explain the clinical rationale for their decisions to provide or to withhold the treatment in question. Prudent doctors should be able to justify the clinical approach taken in the light of current practice. They must take into account recent developments, research and treatment in other countries and at other clinics. Failure to act in accordance with successful new techniques may become more difficult to justify as more evidence becomes available to support these new approaches to treatment. Patients rely on their doctors to give them the most appropriate and effective treatment for their condition and their personal circumstances. Doctors must be able to demonstrate that they have considered what is the most relevant treatment for each patient. The obvious risk in failing to demonstrate that each patient has been considered individually, and that there is a blanket ban on treatment, is of being sued for negligence if the patient suffers harm as a result of the policy.
Recall, then, the three methods of treatment already discussed. We have seen that the first does not work. It should never be recommended by a doctor or endorsed by a hospital ethics committee. The second approach, which delays any active intervention and treatment, should only be used if it can be shown to be therapeutically beneficial for the individual patient. If the third method is requested, it is unnecessary to wait until the patient has attained the age of 18 to obtain effective consent to treatment. In order to reach decisions as between the second and third methods, hospital ethics committees may have to develop guidelines, bearing in mind the overall requirement to consider the welfare of the child. Let us now turn, then, to guidelines which should be considered.
When considering whether to undertake pubertal-suppression treatment, doctors should ask the following questions:
Such decisions must, of course, consider the age of the child and the likely support he or she will receive for a cross-gender life-style from parents, family members, peers, and school or college officials. Nevertheless, in our view, pubertal-suppression treatment should be used in all cases unless there are positive reasons for choosing the second method.
Before turning to an ethics committee for advice, we would recommend that clinicians evaluate the three available methods in the light of the following observations:
Doctors and ethics committees must consider the implications of refusing pubertal-suppression treatment to gender-dysphoric adolescents who have a good prognosis for future gender reassignment. In deciding what path to take in the treatment of these adolescents, clinicians must also consider the possibility of future litigation as a grounds for refusal to treat. The well-documented experiences of the Dutch model of treatment have shown that this treatment can provide an effective approach for young people experiencing gender dysphoria.26 The alternatives, to date, have been shown to prolong distress and to allow the development of secondary sex characteristics, which require extensive, painful and expensive medical intervention in later life.
Gender reassignment treatment is no longer a medical practice in its infancy. It was initiated at the end of the 19th century, and has been provided regularly since the late 1960s. The prognosis for patients is excellent. The younger they are allowed to commence some sort of treatment and cross gender lifestyle, the better. Nevertheless, the social stigmas associated with gender reassignment, and the resulting concerns of clinicians who provide it, are still significant. Doctors must assess the best long-term medical interests of adolescent patients before refusing active intervention. Seeking guidance from their ethics committee would ensure they have shown why they have chosen a particular method of treatment. In the long term, this process of consultation can safeguard the clinician and health authorities from litigation, and can safeguard individual patients, ensuring that they receive the treatment best suited to their clinical and social needs.