Continued from Part 1!
4. Why do you think there is such confusion in the care systems about who should make health decisions?
There is definitely a lot of confusion within care systems about who should make health care decisions about treatment proposed for young persons. The most common “myth” is that young people under the age of 16 cannot make their own decisions about their health, under any circumstances. Often for young people in care, it is presumed that others must make all health care decisions for those under 16 years of age. This, as we know, is simply incorrect in law.
There are two main reasons for the confusion. First, the Health Care Consent Act does reference the age of 16 and so does the Substitute Decisions Act, in one or two places. The ONLY places where the age of 16 matters in our law about health care DECISIONS though, is where young people are making decisions about OTHER people’s health care. So you do have to be 16 before you can be the substitute decision maker for another person.
The Health Care Consent Act came into force in 1996. Before that care systems relied on parts of the Child and Family Services Act to try to figure out decision making on behalf of young people. However, the new law, the HCCA in 1996, applies to all Ontario citizens in all health car settings and replaces the older legislation, if it ever applied to decision-making about proposed treatment at all. There is some language in the CFSA that is potentially misleading but it is definitely not the applicable act? The CFSA talks about who can ADMINISTER treatment to a young person in care – the physical administration of medications is a very different issue from who is MAKING the decisions. In the CFSA there are some sections that suggest different treatment of kids under 12, those between 12 and 16 and those over 16. It is important to be clear that under the real law that applies to health care decisions, the HCCA, only CAPACITY governs who is making these decisions, the young person or their Substitute-Decision-Maker, depending on whether the young person is capable, at ANY age!
5. In your experience, what do you think are some of the barriers to capable young people being able to make their own decisions?
Probably the biggest barrier to young persons making their own decisions is a lack of information and education to health care providers about the actual law that governs capacity and consent. That’s why the Provincial Advocate’s I DO CARE campaign is so important and that’s why young people will be able to affect change, once they are aware of their rights. Young people are often told that because they are too young, they can’t make their own decision. When a doctor tells you this, or your doctor goes straight to your parents to get their consent to treating YOU – a young person doesn’t know they can complain about that or even ask questions. Doctors and care providers are in a position of authority and young people may not feel comfortable or may not have the necessary information to even start asking questions.
The second problem is that even though the law protects capable young persons and their right to make their own decisions, there is pervasive paternalism in health care and legal systems whose bias is in favour of having adults make decisions for young persons. It is a kind of “stigma” that young persons do find it an uphill battle to fight against. There are a lot of steps to getting before a Court or a tribunal to put your voice out there, and sometimes young people are not even made aware that they have the right to fight a doctor’s opinion that they are not capable to make their own decisions. Even once you know you have some legal rights, enforcing them can prove to be challenging and dealing with lawyers and court systems can seem over-whelming and confusing.
The most effective way to remove existing barriers is by educating both young persons and care providers to respect the legal rights of young persons about making decisions about their own health care.