For this and the upcoming week, we have Anita Szigeti speaking about decision making! Anita Szigeti, Partner, Hiltz Szigeti LLP is a Toronto lawyer who has been representing individuals with serious mental health issues exclusively since 1995. She is the co-author of “A Guide To Consent and Capacity Legislation in Ontario” and also a former chair of the Mental Health Legal Committee.
1. The law says that young people who can understand the treatment information (‘capable’) can make their own decisions. In your experience, why is it important for capable young people to make their own decisions?
It is important to capable young people that they make their own health-care and treatment decisions for some of the same reasons that it is important for adults and older adults to do so, and for some reasons unique to young persons. First, everyone is presumed capable to make these decisions and as capable adults, we are accustomed to making these decisions. Young people may not have early experience in making their own decisions, but it is something they aspire to, in the normal course of “growing up.” Once any person feels they understand the choices available to them, they want to exercise their right to choose. Our Courts do recognize the sanctity of the human body and our right to have nothing done to it by others that we have not agreed to have done. Young people are no different than other citizens in that they understand this right and want to exercise it.
In my own experience, as a lawyer representing young people in the context of their decision-making, I have seen great benefits from young people being able to make their own decisions. Even as a Mom of young children, I see that they gain confidence and it is with pride that they make some decisions about their body and health-care that they are able to make – simple things like does a kid with asthma need a rescue puffer? Whenever possible I let my own children make the decision- as long as it is safe and reasonable for them, at very young ages, to do so. In practice, if a decision is made about the treatment of a young person, it is much better that the young person make the decision for him or herself.
The ability to make your own decision builds confidence, and the young person is much more likely to engage with a proposed treatment that they have consented to and agree with. If the young person makes a decision that is respected, the young person’s sense of personal security, liberty and autonomy is strengthened and reaffirmed and the young person’s right to that autonomy is not experienced as violated or breached. The young person feels validated and safe. It is also more likely that the decision the young person makes for him or herself is the right one – as the young person is the only person who knows his or her own body intimately – which is also the case for every capable individual.
2. In your experience, what are some of the effects when capable young people are not allowed to make their own decisions?
If the young person does not agree and is treated against his or her will, he or she feels violated and there is a greater risk the young person will not follow the recommended treatment. Even in situations where the treatment is important for the well-being or safety and health of the young person, and the young person may well have engaged with that treatment if permitted to make his or her own choices, having that decision taken away is often upsetting and traumatic for the young person who then falls away from the treatment for a host of reasons, as an act of defiance, or simply to express their frustration and anger for having treatment or decisions forced upon them.
Young people do experience others forcing treatment decisions on them in the same way as adults or older adults, to some extent, but in some cases, they feel even more violated and compromised when this happens to them. While adults and older adults may retain other spheres of their lives in which they make their own decisions, outside of the health-care context, often what is done with their own bodies is the only measure of control young people have at their age, and having that decision-making taken over by others can feel particularly annihilating – as if they have nothing left that is their own decision to make.
Being told that you cannot decide what is done to your own body breaches your sense of autonomy, diminishes confidence and silences young people, contributing to their sense of confusion, loss and isolation, which they may already be experiencing in their teen years particularly. It is a very intrusive measure that should not be taken wherever it is possible to let a young person make capable decisions for themselves.
3. In your experience, what happens when capable young people try to change their minds about a treatment decision they have made and what is the impact on them?
It is common for young people (and to some degree, adults,) to be found capable as long as they agree with the treatment proposed for them or as long as they comply with the health care being administered to them. As soon as a young person changes his or her mind, however, they often find that they are suddenly found “not capable” to make the decision and their decision to refuse the treatment is then ignored. Someone else (a parent, usually) then consents to the treatment instead of the young person and the young person’s decision to stop the treatment is not respected.
The impact on the young person who was previously making his or her own decision about their health care – when they suddenly have that decision taken away, is often traumatic and always negative, in my experience. It is confusing for the young person to find out that as long as they were going along with what the doctors wanted to do, they were permitted to make their own decision, but the moment they disagreed, their right to make their own decisions was taken away from them and they have no voice left in the process. This kind of sudden over-ride of a young person’s autonomy has adverse effects on the young person’s confidence and their ability to trust adults, including their doctors and their decision-makers, most often a parent or parents.
If they are suddenly removed from the conversation about their treatment, young persons may feel betrayed or duped and disrespected. It is not uncommon that I see a young person doing their best not to comply with the treatment at this point, whether they are permitted by law or not, by covertly trying to subvert the treatment – ie spitting out medication or hiding medication to seem like they were taking it when they are not. This can be dangerous for the young person’s health and could be avoided by ongoing discussions with the young person to make sure they have been included in the decision-making and that their voice is respected, whether or not they are considered “capable” in law to decide.
Stay tuned for the next part!