“Advance care planning” is talking with your child’s doctor about short- and long-term care goals when your child has a life-threatening illness. It starts with an open discussion about what to expect with the illness. It can include talking about treatment choices and palliative care (care of children who have a life-threatening illness). It can also include writing more formal advance directives. (See below)

Advance care planning allows for better communication between a child’s health care team and family. The family can be clear about what kind of care they want for their child. These discussions also help provide family members with information to fully understand the illness and think about the choices they may face in the future.

Why should we do advance care planning?

Many people think that advance care planning is only for dying patients. However, it is just as important to be clear about health care goals early and regularly throughout a child’s serious illness. Parents often face difficult decisions about which treatments should be used. It’s better for both the health care team and the family to be clear before a crisis happens.

Advance care planning can include talking about treatments—from cardiopulmonary resuscitation (CPR) and ventilators (machines that help a person to breathe) to pain management. Your decisions can be as simple as a spoken agreement. However, it may be useful to have them written out, such as in a letter by your doctor. Any decisions you make should be reviewed regularly, especially if your child’s illness changes in any way.

For some, talking about advance care planning can bring out scary emotions, such as guilt and fear. Talk to members of your child’s health care team that you trust. It might help you relieve your anxiety and feel more in control during a difficult situation. It is a chance for you to talk about what is best for your child.

Who should start the discussion?

Anyone can start this discussion—you, your child, the paediatrician or any other member of the health care team. Once everyone knows the goals of care, such as the use of life-saving therapies like CPR and drugs or other ways to reduce pain, you can talk about treatment options.

Making treatment decisions involves weighing the benefits and risks of all options. Consent is required for all treatment decisions, including refusing treatments. There are 3 things needed for consent to be valid:

• You must make the decision freely—it is entirely your choice.
• You must have enough information to make a choice.
• You must understand the information.

Children and youth usually fall in 3 categories in terms of their ability to make their own decisions and give consent:

• Children who are too young to participate in discussing their care.
• Children who are starting to learn and mature and understand their illness. This is a good time to discuss options with your children and let them know what is happening.
• Children who are fully able to give consent. This means a child who has not yet reached the age of majority but who has the maturity and understanding to be able to think about and choose treatments.

Parents are usually the ones to make decisions for their child. For the first two categories, parents give consent or permission for treatment on behalf of their child. Older children or youth may give their own consent for treatments or procedures, if they are mature enough to fully understand. Local laws may require children to reach a minimum age before they can give consent.

It is important that you are open with your child about what is happening and let him make decisions when appropriate.

What is an advance directive?

There is a trend to encourage all adults to have advance directives, sometimes called “living wills.” They tell others about their treatment wishes in case they are not able to decide for themselves. Advance directives make sure that treatments meet the person’s own needs and wants.

You may wish to do the same for your child, even though it may not have full legal weight. If your child is older, he may want to make some of his own choices. Home care workers and schools can then be told of these directives.

Most provinces/territories in Canada do not have legislation that makes advance directives made by mature minors legal. In Saskatchewan, Ontario, New Brunswick, Prince Edward Island and Newfoundland the legal age is 16. Despite this, it’s still important for your child to express her wishes.

More information from the CPS:

• Advance care planning, a statement of the Canadian Paediatric Society

Reviewed by the following CPS Committees:
Bioethics Committee

Last updated: November 2008