Overview

It can be scary and confusing to think about the future when your child is very sick. Even as you try to cope with these feelings, you may need to make important decisions about your child's care. Advance care planning may help you feel more prepared.

Advance care planning is conversations and plans made with your child's doctor about your child's future treatment and care. This planning is helpful if you'll face hard decisions or aren't sure what might happen.

You may also hear your child's plan called an advance directive or a living will.

Advance care planning is a process that happens over time. Plans can be changed anytime you like. Your older child or teenager can join these talks if you feel they are ready.

Why planning is important

Advance care planning helps you:

• Learn what decisions you may need to make about your child's care.
• Learn about treatment and care options for your child.
• Be ready to make hard decisions quickly.
• Talk about your goals and wishes for your child's care and comfort.

You can also consider how much medical support you want your child to have at certain moments of care.

Making advance care plans for a child who is very sick doesn't mean that you're giving up on your child. These plans help the doctor understand what's most important to your family as you care for your child as a team. And it helps you give your child the best possible quality of life.

Making an advance care plan for your child

Good communication with your doctor is important when making advance care plans for a child who is very sick. These talks help you learn about treatment and care options. And they help guide your child's future treatment, comfort, and care. Use these ideas to help with your planning.

• Talk with your child's doctor about your wishes for your child's care.

  Share your goals, values, fears, and preferences for your child's treatment and comfort.

• Ask the doctor lots of questions.

  You may want to know things like:

  • What decisions might I need to make for my child?
  • What treatments might my child need? And what happens if they don't work?
  • How can I make sure that my child isn't in pain and is comfortable?
  • How can I help my child have as normal a life as possible?
  • What do I need so I can care for my child at home? Who can help me with this?
  • What resources can help me as I make decisions about my child's care?
• Ask a friend or family member to support you during planning.

  They can even attend meetings to listen or take notes if you'd like.

• Get help if you and other caregivers are having a hard time agreeing on the plan.

  Some hospitals have team members that can help you talk and find common ground.

• Remember that you can change the plans as your child's needs and your wishes change.