Making treatment decisions for babies, children and teens

Making treatment decisions for a child’s illness can be stressful and difficult. You’re probably already upset that your child is sick or in discomfort, and you may be asked to make decisions quickly.

To ensure your child benefits from treatment, decisions should be made jointly with their health care team and, depending on their age and ability, with your child as well.

Decisions could include:

• Choosing between more than one treatment.
• Timing: Whether to have treatment now or wait.
• Weighing the benefits of treatment(s) against the potential harms of side effects.
• In some circumstances, when a cure is unlikely, the decision may include stopping some therapies and/or treatments. If this happens, the priority will be therapies or treatments that keep your child as pain and symptom-free as possible.

Parents (or guardians) are usually the main decision-makers for young children. Here are some things to consider:

• If you don’t understand your options, ask questions. If you speak a different language than your health care team, you can ask for help from an interpreter.
• Which treatment plan is the best for your child?
• Review your choices. How will they affect your child’s lifestyle, health and well-being?
• Will your choices be influenced by personal, cultural, moral, spiritual or religious values and beliefs?

What is informed consent?

After you talk to your child’s health care providers (and your child, if appropriate) about all the issues and have come to a decision, you will be asked to give informed consent. In most hospitals, you will be asked to sign a consent form.

Informed consent means you:

• understand your child’s medical condition,
• understand your choices,
• understand the risks and benefits of your choices,
• have had the chance to ask questions,
• are making a decision of your own free will, and
• agree to the treatment.

If you still have questions or concerns, discuss them with your health care providers before you give verbal or written consent.

Older children and teens

As children grow and develop, it’s important to answer their questions truthfully and to include them (in a way that is appropriate to your child’s age and developmental stage) in making decisions about their health and treatment. This may help your child be less afraid and anxious and more likely to trust health care providers.

Eventually, young people will be asked to make their own decisions and provide their own informed consent. This is their legal right, and their health care providers have the responsibility to make sure this happens.

The legal age of consent is different depending on which province or territory you live in. In some places, there is no specific age and it will depend on the young person’s ability to understand and make decisions. Your health care provider should know or be able to find out for you.

End-of-life decisions

Not every child will recover from trauma or illness. Making decisions for a dying child is especially difficult and complex because you are suffering from extreme sadness and grief. If this happens, the goal is always to do what is right for the child and sadly, sometimes the right decision is to not start, or to stop life support and allow your child to die as peacefully as possible.

Your health care providers will try to make your child comfortable and provide relief from symptoms (like pain and shortness of breath) and will talk to you about ways to receive emotional, psychological and spiritual support. This is called palliative and comfort care.

It is very important that you get the help you need in this situation, and to remember that other children will also be confused, very sad and may need special help. If this is the case, speak to your health care provider about your options.

When people disagree

Sometimes, family members will disagree with each other, with your child or with a member of the health care team about what is best for your child. If this happens, ask for help. Some hospitals have people who can help with decision-making and conflict resolution, such as an ethics consultant or patient representative.

You may also want to bring someone you know to a meeting, such as another family member or a member of your religious community. Sometimes it can help to get a second medical opinion or to replace a member of the health care team (though this option may not always be available).

In rare cases, a child’s health care provider may be concerned about the welfare of the child when the treatment decision is not felt to be appropriate. In these cases, the healthcare team is required to consult with a children’s protection agency.

Remember to carefully consider your child’s needs as well as those of your family, but make sure that the needs of your child come first.