89 Medical decision‑making competence regarding puberty suppression: perceptions of transgender adolescents, their parents and clinicians 5 “We [the parents] said to each other, we would not have let her [our daughter] make any other radical decision at the age of twelve. If she had said ‘well I really do not need any more schooling’ at the age of twelve [...] [then we would have said] that’s out of the question, because we are your parents and we decide that you do have to go to school [...] You feel like you do not have a choice [about whether or not to start treatment with puberty suppression]. I’m glad it [this treatment] is available, but we did not really experience it as having any choice. [...] My husband and I felt we had to choose between two evils and concluded we’d better choose the puberty suppressing treatment. [...] Of course it is sad that she might die sooner because of all the chemicals that she has to take, but on the other hand there’s no point in living your life if you’re not able to be yourself.” - Interview with a parent of a transgirl who continued PS; age at start PS: 12.4; age at interview: 18.6 On the other hand, many adolescents, both continuers and discontinuers, and their parents mentioned that they simply accepted possible negative consequences of the treatment and did not really take them into consideration. “At the time I did not think very much about the pros and cons of puberty suppression [...] I had really already made up my mind [even before I had heard about the disadvantages of the treatment].” - Interview with an assigned female at birth who had discontinued PS; age at start PS: 16.7; age at discontinuation PS: 17.0; age at interview: 19.5 “No, because for her there were no disadvantages, only advantages [of the treatment]. [...] We [the parents and daughter] never actually talked about the disadvantages, except that the injections are annoying and that sometimes you can feel unwell [because of the injections]. But she did not take that into consideration. [...] The other way [not starting treatment with puberty suppression] was not an option. [...] So to what extent can one even speak of a consideration? The disadvantages are just part of the deal.” - Interview with a parent of a transgirl who continued PS; age at start PS: 12.0; age at interview: 18.1 Defining medical decision-making competence The term MDC per se was only discussed during the focus groups with the clinicians. Most clinicians encounter difficulties defining MDC: exactly what should an adolescent understand regarding the treatment, or what should one be able to explain to be considered competent to consent? Additionally, they wondered what the term ‘understanding’ means in this context.
RkJQdWJsaXNoZXIy MjY0ODMw