90 Chapter 5 “What does medical decision-making competence entail? […] You can talk about medical decision-making competence as in ‘do you know what happens when you use puberty suppressing treatment and do you know what the full medical trajectory entails’, so that you are aware that if you start treatment with puberty suppression, you will have to have surgeries in the future to get a penis. Is that what it [medical decision-making competence] entails? Or is it [medical decision-making competence] about the fact that if you use puberty suppression, that will stop [pubertal development] and might negatively impact the strength of your bones? According to me, there’s quite a difference between these two [ways of describing what medical decision-making competence entails].” - Focus group with clinicians Assessing medical decision-making competence Some clinicians stated that they assess MDC differently depending on the adolescent’s developmental age. They wondered what one can expect from an X-year-old child or adolescent with regard to, for example, understanding and appreciating what the treatment and its consequences entail. Some parents mention this too. “That’s what I find difficult about medical decision-making competence: you verify whether someone has understood the information and to what extent someone can appreciate the consequences of the treatment in the future, but to what extent can an 11 year-old understand and appreciate that future properly? I think most 11 year-olds are not quite able to do that yet. But that does not mean someone lacks decisionmaking competence, that’s simply appropriate for the [child’s] developmental age.” - Focus group with clinicians “Of course we do not know to what extent a child of that age can already understand and appreciate an entire lifetime. [...] That [not being able to understand and appreciate things when you have not experienced them] is not only inherent to being a child [this is also true for adults], but when you are older you have seen a lot more of the world and you know what the impact can be on a person’s life and a child does not.” - Interview with a parent of a transgirl who continued PS; age at start PS: 12.0; age at interview: 18.1 Some parents mentioned that no matter how much information you receive prior to starting treatment, and no matter how much thought you put into this, there are some things that you simply cannot know or understand before you experience it. “Some things you just do not and cannot know until you’ve experienced it. Some things you need to experience before you know.” - Interview with a transgirl who continued PS; age at start PS: 12.9; age at interview: 17.8
RkJQdWJsaXNoZXIy MjY0ODMw