GUEST BLOG: Provincial Advocate on Informed Consent

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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!

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9 Comments

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  1. anonymous adult ally March 8, 2013 — 3:23 PM

    I think the idea of seeing consent as an ongoing dialogue is a critical one. Often adults and youth believe that once a youth signs a consent form the conversation is over and does not need to happen again until the form ‘expires’. I’ve seen youth in treatment centres question the need for medication and the staff person will tell the youth they have to take it because they (or their guardian?!?!) have signed a form! I can’t imagine somebody in my life saying that to me. Every day I make the decision whether or not to take medication, engage in a medical or other treatment, etc. I get to re-evaluate that every day and nobody can tell me I have no choice because I ‘signed a form’. I can choose to do things that are ‘good’ for me and also make ‘bad’ choices – even when I know there’s a better choice. It only makes sense that this is true for children and youth and that the adults that support them assist them to learn how to evaluate information and make informed decisions. Even, or especially, when those decisions may not be what’s ‘best’ for them. Everybody ‘wins’ when children and youth have the information and support they need to make ongoing decisions about themselves, their bodies and their health and wellness.

    Looking forward to ongoing dialogue about health rights through IDC!!!!

  2. i don’t get how workers think that ordering us around and not considering our opinions will make our relationship any better….in order to make me listen i need to know that you care and in order to make me know that you care…we need to have a dialogue where my opinions are important. it’s like some dictatorship…it’s not healthy. i know sometimes they think they know but they really don’t without raelly knowing what we want. This project is really cool! keep it up!

  3. “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.” This is a really important point you bring up Irwin. If caregivers and adults in young peoples’ lives make decisions for them, the aspect of self-determination is taken away and their decision making skills cannot be further developed. Consent and decision making is about providing people with all the tools (information, access to supports etc.) for THEM to make an informed decision. It is about presenting them with all the available options (not just the one the social worker or caregiver thinks is the best option) for them to make an informed decision. Discussion should consist of the pros and cons as well as the young person’s feelings and concerns. This provides everyone at the table with a better and perhaps a comprehensive understanding of the situation and most importantly, it may aid the young person to make an informed decision.

    As for social workers, caregivers and anyone who interacts with young people, we should never underestimate young people’s capacity to make GOOD decisions for themselves. After all, we are the experts of our own lives.

  4. It struck me over the weekend that at the crux of all this discussion is the importance of “relationship”. I read a report from Britain that was just released on children in care. It stated that in every case where young people who left the system were doing “well” the young person pointed to an important relationship that was the backbone of their “success”. It was reported as if this was news! The process of consent as discussed seems to me to rely upon a trusting relationship. How could it take place without one? I am interested in what makes for a trusting relationship between a care giver, a counselor, a medical practitioner and a child or young person

  5. I think relationship is very important. I think the best thing I have in care is one of my group home workers. She is open with me and I love that about her. I wish my CAS worker was like that, we would have a better relationship. My group home worker always explains everything to me. Before she was my one on one worker, I had another group home worker and he was not like her. I don’t think he really cared about us he was only nice when he gets to play basketball with us or go on programming rofl. The group home one to one worker I have right now always tells me that I am a smart person and I feel like we work together to make decisions i actually never heard any of the other staff ever tell me anything like that. The only thing I don’t get is if I refuse to take my medication because I do not want it and it isn’t something for somehting serious…can they force me to take it? I feel like my one to one staff worker is cool and she understands when I don’t want to take my medication but I feel like her boss is the problem because she told me that she would get in trouble if I don’t take it. How does that work? In my mind if you treat us with respect and beleive in us we would beleivve in ourselves more and also get along better with our workers. kinda awesome that we can say something about these things i think more of us should speak up

  6. The conversation about ‘relationship’ and ‘caring’ is key. What makes a good, trusting relationship? It includes all those aspects of informed consent and decision making that you are discussing. Full circle.

  7. do you really understand? March 13, 2013 — 3:13 PM

    It is exactly how it is, it’s like people driving my life and i don’t have control over my own life. we aren’t stupid and when you are not in our lives anymore are we going to have people drive our life? so stupid. we are just the kids so people don’t take us seriously but we have the right to be a part of making decisions about our lives. ive been in 4 different homes and people need to understand that sometimes life sucks and we can be hard to work with or whatever but its because our life is screwed up. give us a break and let us know that we actually matter. actually show us that you care and not just there to make a buck and hang out on the couch. thats another issue how can we be healthy if we can’t use our rights and if we can’t have normal relatoinships? we aren’t allowed to show ****affection**** no hugging, nothing that normal ppl do….cuz we are not normal? no we ARE normal. what the heck is normal anyways? everyone has prbolems but because we are in care it seems like people just think we are stupid and trouble for no reason as if we dont have pasts that affect us for why we are in care in the first place. at the end of your shift you get to go home. we are still here. you’ll never understand what we are going through because you are not us but try to think of how you would want to be treated if you were in our shoes. tihs is canada right? we have rights. tell us we have rights and make sure we can use our rights.

  8. Rights? ya right! March 13, 2013 — 3:24 PM

    Oh so we do have more rights than the ones in the pamphlet we get?

    I like how we get to talk about rights. I’m not sure how we can learn our rights if our group home workers don’t know our rights? to tell the truth it’s hard to take someone seriously when you are sure that they are only a couple years older than i am and know that they aren’t treated like we are because we are in care. I think these things need to be talked about a lot not just have a sheet on a bulliten board.

  9. Provincial Advocate, Irwin Elman March 19, 2013 — 2:38 PM

    It seems to me that many care givers and service providers think of the provision of rights as a threat or perhaps a nuisance.

    Not a person through these comments has suggested anything more than the desire to receive all the information they need about any medical decision; options, side effects, advice. Of course this can only effectively be provided through a safe dialogue enveloped in trust. In the end each person wants the right to decide what is best for themselves and their bodies.

    This is hardly revolutionary but to get to this point our systems of care must change fundamentally in the way in which care is understood and provided. Change that is much more than just the necessary provision of an expanded booklet of rights.

    Keep the comments coming!

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