Consent, capacity and confidentiality

What is consent? 

Consent means giving permission for something to happen or agreeing that someone will do something for you on your behalf. Giving consent is like agreeing to something ahead of time. You give consent for different things every day. For example, if you make a new friend and decide to share your phone number, you are giving them consent or permission to contact you. Another example is when you install a new app on your phone; it may ask you for your consent or permission to know your location.  

In health care, you and/or your parents/caregivers will be asked to give your consent before you have any kind of tests or therapy or before any decisions are made that involve you. 

While giving consent involves agreeing to something ahead of time, you can choose to talk more about what you agreed to at any time during your treatment. 

How do I give consent? 

Sometimes giving consent is as simple as saying yes or showing you agree. For example, you consent to a routine blood test by showing the phlebotomist (the person who collects blood) your arm. This is called simple or implied consent and is ok when there aren't a lot of risks involved. 

When a test or therapy has more potential side effects, you will be asked to give formal verbal consent, such as before a blood transfusion or an immunization. 

You will be asked to give written consent by signing a form that is then kept in the health record before: 

• some procedures and tests such as biopsies 
• surgery, radiation therapy or chemotherapy 
• any procedure that requires a general anesthetic (medicine that puts you to sleep) 
• taking part in a research study 

Of course, before you consent to something, you will need to fully understand what you're agreeing to. Your health-care provider will explain: 

• the reasons for the test, therapy or research study 
• what exactly will happen and when 
• the potential benefits of the test or therapy or of taking part in the research study 
• the potential risks 
• any other options you could choose instead 
• what would happen if you chose not to have the test or therapy or take part in the research study 

You may also be given a sheet with all this information so that you and/or your parent/caregiver can think it over and discuss it. It's your right to have all the facts, so if you have any questions or if there is anything you don't understand, make sure you ask. It is important and helpful that you ask questions so that you understand, so don’t be embarrassed to do this! 

Who gives consent? 

Different countries and provinces have different laws about who is able to give consent. In Ontario, there is no specific age that teenagers must be in order to consent. Teenagers who are able to understand the options can give consent themselves. In other provinces, you must be a specific age to consent to treatment. Even if your parent ultimately gives consent, you should still be a part of making the decision. 

What else should I know about consent? 

Giving consent is completely voluntary! This means no one can force you or your parent/caregiver to consent to anything you don’t want to do. If you are too young or unable to understand the treatment, test or research project this may affect your ability to provide consent. 

Part of giving consent means weighing the good things (potential benefits) and the bad things (potential risks) about the treatment, test or research project. Consenting to something that seems difficult or involves more risk means that you should talk about it as much as you need to with your parent/caregiver and your health-care team. You should have the chance to talk to everyone about what this means for you. 

If you’re unsure or uncomfortable about giving consent, it’s ok to let your parent/caregiver decide. If you don’t want to give consent, it is ok to say that to your parent/caregiver, health-care team and researchers. What’s important is that you discuss your feelings with them and everyone involved. Sometimes you may not feel well enough to make the decision. That’s ok too. Your health-care team will work with you and your family to make sure the best decision is made for you. 

Even if it is your parent/caregiver who gives formal consent, you may still be asked for your assent. Assent means that you understand and agree with your parent’s decision to give consent. You may give assent just by saying yes or by signing a form. If you don’t want to give your assent, usually your health-care provider will try to understand why and will try to help you and your parent/caregiver reach an agreement. 

Your health-care team won’t be upset or treat you any differently if you or your parent/caregiver don’t consent to something they’ve suggested. It’s your choice and they must still treat you the same way and give you the best care they can no matter what you choose. 

After giving consent, you can still change your mind at any time for any reason. You just need to tell your health-care team and you can stop the procedure or quit the research study. 

The bottom line is that it’s your body and your life! Part of growing up is taking part in making important decisions that affect you.  

Making decisions about your health 

The decisions you make about your health and health care are very important. They are so important that they are governed by a set of laws. In some provinces, your ability to make decisions about health care is tied to your age and in others it is based on your capacity to understand the decision. 

What is capacity? 

Capacity relates to your ability to make decisions. When you are a baby, you do not have very much capacity, that is, you cannot make many decisions for yourself. As you get older and become more mature, you have the capacity to make more and more decisions for yourself. Capacity is not a “blanket concept,” meaning just because you are capable of making one decision, does not mean you are always capable of making every decision. When you are younger, you may be capable of making some small-scale decisions, but you may still need help from your parents/caregivers to make more important decisions.  

Your capacity to make some decisions is often related to your age. For example, you have to be 18 years old in order to vote in an election. However, your capacity is also determined by how much you understand. For example, you have to be 16 years old in Ontario before you are able to obtain a learner’s permit to drive, but you cannot obtain your full licence until you have passed two driving tests. 

In health care, capacity has a special definition with two parts: 

1. Understanding: your health-care provider needs to know that you understand the information about the decision you are going to make. 
2. Appreciation: your health-care provider needs to know that you appreciate what the decision and the consequences of the decision mean to you as a person. 

In Ontario, unlike driving and voting, there is no minimum age to consent to medical treatment. Every person, regardless of their age, is assumed to be capable to make decisions about their health unless a health-care provider determines they are not capable.  

What happens if I am not capable of making a decision about my health? 

Sometimes, it is obvious when a person is not capable of making a decision about their health. For example, it is obvious that babies cannot make their own decisions about their health. Another example is if you are in an accident and unconscious; it is clear you cannot make decisions when you are unconscious. In those situations, a substitute decision maker will make decisions on your behalf. For children and teens, their parents/caregivers are most often their substitute decision makers. Substitute decision makers are required, by law, to make the best decision for you, which means they must make the decision that is in your best interests. 

There are other situations where it is not so clear if a person is capable of making their own health decisions. This might be because the person is suffering from a physical or mental illness, or they are a young teen who is still maturing. For very important decisions, health-care providers may do a capacity assessment to ensure you are capable of making the health-care decision. The capacity assessment must be performed by the health-care provider who is suggesting the treatment, such as your doctor, nurse, or therapist. 

Confidentiality in health care 

Confidentiality in health care refers to your right to keep personal health information, or PHI, private. PHI includes your: 

• name 
• birthdate 
• upcoming medical appointments 
• medical history 
• medications 
• lab or test results 

Health-care providers follow laws that prevent your health information from being shared without your permission. There are certain exceptions to protecting confidentiality. In specific circumstances, health-care providers are obligated to share information with others to protect your safety or the safety of others. 

Consent, capacity and confidentiality are all connected. If you are capable of making a health-care decision, then you have the right to give consent or refuse treatment, and the right to keep personal health information confidential.