Who decides?

When children are ill, parents or guardians usually act as “surrogate decision-makers” to make choices about the child’s treatment. That’s because most children are too young to be able to make complicated decisions for themselves. 

Who Decides
Who makes decisions?

It’s up to parents to work with the healthcare team to make choices that are in the best interests of the child. The healthcare team will offer information about your child’s condition, explain test results and tell you about the different options you have for the care of your child. They will tell you the benefits and risks of each option.

Most pediatric healthcare teams will encourage you to include your child in making decisions and choices. Even very young children are aware of the changes in their own bodies. Your child’s involvement will depend on their age and understanding, and on their interest and ability to take part in making choices. Knowing how your child feels and what they want or hope can help guide your decision. In most centres, you will work together with your child and your healthcare team to make choices and decisions that best suit the needs of your child and family.

Note: Mature minors have a right to decide on healthcare treatment that is in their best interest and do not need parental consent. A mature minor is a person below the age of consent who has demonstrated decision-making skills and whose physical, mental, and emotional development makes them capable of fully understanding the nature, potential harm, benefit, and consequences of agreeing to or declining medical treatment.

How do I include my child?

You may be able to talk with your child about choices and decisions. However, it’s hard for children to express their worries and to know what questions to ask. You might have to take the lead to talk about difficult topics. Help your child to talk about their feelings and thoughts. If your child is not able or willing to communicate, watch their facial expressions and body language. Young children often express their feelings through play. 

If your child is able to communicate, ask them some questions like:

  • What questions do you have for me or the team?
  • What do you want the team to know about you and how you feel?
  • Would you like me to be with you or would you like to talk with the team in private?
  • Are there things you do or don’t want to know about your treatment? For example, do you want to know ahead of time if something will hurt?
  • Are there things you do or don’t want to know about how you are doing? For example, do you want to know how long the team thinks you might live?
  • What do you most want the treatment to do for you right now?

Your healthcare team can help you find ways to support your child to take part in discussions about their care. Social workers, child life specialists, and psychologists, have special training in working with children. 

How do I decide between options?

When you are faced with a hard decision, the different options, and the reasons for or against each one, can swirl around in your mind. They may all feel overwhelming. Here are some ideas to help you see your choices a bit more clearly. 

Focus on your goals 

Start by thinking about your goals for your child and your family. Then look at each of your options. Think, talk, or write about how each option will bring you closer to, or further away, from your most important goals. For example, if your most important goal is to have more time with your child, you might choose an option that helps your child to live longer, even if it means potential side effects and more visits to the hospital. If your goal is to focus on how your child will feel during whatever time they have left to live, you may choose an option that helps them feel comfortable or allows them to be able to do something special. There is no single or “right” way to move towards a goal and each family will make their own choices based on their goals.

Weigh the “pros and cons” 

For each of the options, write a list of the possible risks and benefits, or “pros” and “cons” (positives and negatives). Try to think about things like:

  • How would this option affect your child’s body, mood, feelings, activities, etc.?
  • How would this option affect other members of your family?
  • How would this option affect your family’s routines, plans, etc.?

Look at the list to see which options have more pros than cons, and which of the pros and cons feel most important. 

Assess your feelings

Pay attention to your reactions to the list of pros and cons. If one option  has a lot more pros than cons, it might seem like it’s a good choice. You might have a strong feeling that you really want to do something or that you really don’t want to do it. This reaction can be helpful because it lets you know how strongly you feel about something. Think about what caused that reaction:

  • Is there a value that’s important to you that is not met by that option? 
  • Is there a fear about something that might happen if you choose that option? 
  • Is there another choice you can make that would match better with what matters to you?
  • Is there someone you can talk with who could  take care of the thing you are afraid of? 

Imagine looking back from the future 

Try to take yourself out of the moment. Imagine that you are looking back on this situation from the future. What do you want to look back and see? Some people make choices that will help them to avoid having regrets. For example, some families need to feel sure that they have “tried everything”, even if doing so impacts the quality of the time they spend with their child. Others might regret spending their last weeks with their child running around to medical appointments that would ultimately prove unhelpful. There is no “right” way to make these choices. They will be different for each family and each situation. 

Think about what happened in the past

Your own past experiences can influence the way you think about the present. For example, if someone made decisions for you when you were a child, without your input, you might want your own child to have a voice in their own care. You might also think about how your child reacted when they were included in conversations and decisions about their own care. If you have supported someone else through a serious illness or if you knew someone who died, those experiences can inform the way you make choices and decisions for your child.

If you have not had experience with illness or death, you may not know what to expect. The unknowns and “what if’s” can make decisions about your child’s care feel even more difficult to make. In these situations, it may help to:

  • Talk with healthcare team members, including pediatric palliative care providers. They can help you to know what to expect.
  • Think about how you’ve made other important or difficult decisions in the past. The same values and guiding principles you used then may be helpful.
  • Talk with spiritual leaders or trusted family, friends or community members.

Follow your instincts

You might have strong instincts or “gut feelings” about what to do. These feelings may be very clear or they might be drowned out by fears or wishes to protect your child. One father explained, “you have to talk through it so you can figure out which part is fear and which part is your gut actually knowing what’s the best thing to do.”

Talk with others 

Talk to other people about your options. Even if you don’t agree exactly with their opinions, it can help to talk about why you feel the way that you do, or why you disagree with something. Talking can help you to see your choices and thoughts more clearly. You might talk with:

  • Family
  • Friends
  • Trusted healthcare providers
  • Spiritual advisor or community members
  • Palliative care team. This is a very important part of the work they do. It can be  helpful to have help from an independent team to make hard decisions.
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