Planning care for children and youth with serious medical conditions
What is advance care planning?
Many people think that advance care planning is only for patients who are dying. But it is just as important to be clear about your health care goals if your child has a non-life threatening, but serious illness. In both these situations, you will be faced with difficult decisions about which treatments to use.
Advance care planning:
Starts with an open discussion with your child’s doctor about what to expect with your child’s illness.
Includes a discussion of short- and long-term care goals for your child’s medical care, so that you can be clear with your health care team about what you want for your child.
Will include discussions about your choices for treatment.
Talking about advance care plans 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’s best for you to fully understand all the choices you have and make an informed decision about what is best for your child before a crisis happens.
What kind of discussions will we have?
Advance care planning can include talking about treatments—things like ventilators (machines that help a person to breathe) to how to manage fatigue. Your decisions can be stated through a verbal agreement, but it may be helpful to have them written out, such as in a letter to your doctor. Any decisions you make should be reviewed regularly, especially if your child’s illness changes in any way.
Who will start the discussion?
Anyone can start this discussion—you, your child, your child’s doctor or any other member of your child’s health care team. Once everyone knows and understands the overall goals of care—such as the use of life-saving therapies or ways to reduce pain—you can talk about treatment options.
Making treatment decisions means weighing the benefits and risks of all your options. Consent is required for decisions about treatment, 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 into 3 categories in terms of 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 talk about options with your child and explain what is happening.
Children who are fully able to give consent. This is a child or teen 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 participate in and 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 be fully recognized in the province or territory you live in. 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 laws that recognize advance directives made by mature minors legal. In some cases, schools also have guidelines about how they will be used. In Saskatchewan, Ontario, New Brunswick, Prince Edward Island and Newfoundland and Labrador the legal age is 16. Despite this, it’s still important for your child to express her wishes about care.