For our first guest blogger, we invited Irwin Elman to speak on informed consent!
1. Consent is not a form- it is a full and ongoing conversation. In your view, why is this important?
Young people have told us that they want to have a full conversation with health care practitioners. They want to know what is going on with their health, all their treatment options and how these things might affect their life. Young people who do not have natural advocates or strong relationships with supportive adults have said that they need to have all the treatment information so that they can decide whether or not they want to do it by themselves.
Being involved in an ongoing conversation about consent means that young people get to experience and learn the steps to making a decision. This builds their own skills for when they will have to make all of their decisions on their own, often at a young age. Understanding what is happening with their health and giving informed consent results in greater control over their lives and stronger relationships with supportive adults. Treatment decisions reached this way reflect what young people want to happen in their lives, the things that are important to them, and their everyday reality. In this way the process of consent is ongoing and is based in a relationship that becomes trusting.
I remember a young person telling me that he often felt like a passenger in a car that is his life. He painted an image of him sitting in the backseat and being driven around by an adult who thought they knew what was best for him — never having a say in, nor often even knowing, where he was headed. If we want those young people who feel like passengers in the vehicles of their lives to feel whole, if we wish those children coming into care to feel confident in their abilities and hopeful for their futures when they later must leave the system, we must begin to afford them their health rights now.
2. How are young people in the care systems particularly vulnerable?
Young people often do not know their health rights, although they tell us that their health rights are very important to them. In the care systems, they may have many different caregivers and layers of caregivers with different amounts of power and responsibility. We also hear from these caregivers that they too are unclear as to the health rights of children they care for. Young people are often disconnected from family and community and say that they have difficulty asserting their rights and being heard. At times young people are medicated in order to serve the needs of the institution caring for them, rather than for their own well-being.
3. The HCCA (Health Care Consent Act) states that nobody is allowed to “force or trick” someone into giving permission for a treatment. How does this affect young people.
Some everyday examples include young people being consequenced or punished by having television privileges taken away or not being allowed to take part in group outings and other programming. Denying a telephone call to their parent in order to pressure a child into taking medication has also occurred. Recently a young person told us about another young person in her group home, saying that she sleeps all day because staff don’t want to deal with her so they sedate her.
Having control over your own body is a primary right. It is difficult to imagine how children and young people could be expected to take control over anything else in their lives when they feel they don’t have control over decisions about their own bodies. Some well meaning caregivers feel they know what is in the best interests of the child, make the decisions and in fact, enforce them. In my experience, this actually works against their best interests because it removes children’s control over their own bodies.
Have questions or thoughts? Leave your comments below and the provincial advocate will be replying back!