The pivotal question is this: To what extent should the voice of young people factor into clinical, individual and policy decisions?
On a clinical level, that is already happening. As I mentioned, if a child with a neuromuscular disease no longer wishes to have long-term ventilation and decides that enough is enough, we have ways to assess their decision-making capacity. We really have an obligation to give significant weight to their wishes.
The process for determining the decision-making control of a mature minor varies by province. In some situations, for instance, the process is subject to a best interests of the minor assessment. Accordingly, even if the minor's decision-making capacity has been established, others can determine that the minor's choice goes against their best interests, thereby limiting the weight given to that choice.