When your child has a serious illness, you may have many hard decisions to make. You may feel a lot of pressure to make the “right” decision. But it can be very hard to know what is “right” for your child. 

Healthcare providers think about rules or values known as “medical ethics” to help them make hard decisions about how to treat patients. The values include ideas like: 

• Do what’s best for the patient 
• Don’t cause harm 
• Respect the patient’s right to choose or refuse treatment
• Include the patient in making decisions
• Tell the truth
• Treat patients fairly

The values about the “right” way to treat patients often conflict with each other. For example, chemotherapy is a treatment for cancer. It may be “what’s best” because it can cure cancer. But the side effects of chemotherapy also cause harm. When your child is seriously ill, you and the healthcare team will talk together about the risks and benefits of different treatment options and the best way to balance these important ethical issues given the situation. 

Talk with your child’s health care team to get as much clear, accurate, and up-to-date information as possible to help guide your decision-making. Here are some questions to explore: 

• What do test results and examinations show about my child’s condition?
• What are all the options the team is thinking about?
• What are the possible risks and benefits of each option?
• Given what the team already knows about this illness and your child, is there one option that they feel is the much better one? Why or why not?

If you can get answers to some of these questions, you may find that your options are clearer. But it can still be hard to decide what to do. Take some time to think about what matters to you and your child. Think about:

• What you know about your child’s disease and how you expect it to progress. Think about how long the doctors think your child might live and what your child’s life will be like.
• Your child’s wishes or priorities. Think about things your child has told you, as well as things you know based on their behaviour or reactions to things that have happened before.
• Your hopes and wishes for your child. Think about experiences you might want them to have. Think about your fears and concerns for their well-being.
• Any beliefs you have. Think about spiritual or religious beliefs about life, meaning, death, and other big questions.
• Beliefs of other family members and important people. You may each have different ideas or feelings about the choices you have to make. Talk with the people whose input you value if you feel it would be helpful or feel supportive. 
• How you view your role as a parent. It’s natural to want to “be there” with your child, to provide comfort, reassurance, love and a sense of safety. It’s also very common and natural to want to protect your child. “Protection” might mean trying every treatment available to try to slow the illness. Or it might mean avoiding suffering by stopping medical treatments and being at home together. There is no single or “right” way to protect or to parent your child.  

“We knew her brain stem was starting to fail, we were dealing with a life limiting non-curable disorder, so being able to hold our baby at home without all the extra tubes felt like a better fit for our family and that was important to us.” – Esther, mother of Elianna and Eli-Grace

• There is no single “right” or “wrong” decision. Choose what feels best for you, your child, and your family. Make decisions based on the situation you’re in and with the choices that you have at that time. 
• Most of the time, decisions are not final. You can change your mind. If you choose one option but then find that it’s not working out the way you hoped, you can usually make another choice. For example, if you choose to use a feeding tube, you can stop using it if the goals of care or your child’s condition changes. 
• Try to find a balance. Many decisions might seem like “all or nothing” choices - continue treatment or stop treatment; use a feeding tube or stop using it. But in reality, a blended approach can often be found. For example, the healthcare team might stop using medicines that try to cure a disease but will give your child medicine to treat symptoms and pain. If you’re not confident about a decision to go completely in one direction, perhaps there’s a blended approach that might be right for you? This is something that you can discuss with your child’s healthcare team.