Making Treatment Decisions

Learning that your child has cancer can make you feel like your life has turned upside down. Many decisions – large and small – have to be made at a time when you feel stressed, tired and worried. You may wonder if you can make good decisions about important things like your child’s treatment. You probably have already made many key decisions, like figuring out where your child would be treated, asking family and friends to help out with home life, and deciding who will stay in the hospital with your child.

In this conference, you will be asked to make a decision about your child’s treatment, which may involve enrolling him or her in a clinical trial. The doctor will explain what a clinical trial is, what treatment options are available, what treatment is being recommended and why.

You will be given a copy of a consent form to read and keep.This form will describe the treatment plan, the risks and benefits of the particular treatment, any medical procedures involved and what is required of your child and your family during treatment.Unless treatment needs to be started immediately, talk with your doctor about how much time you have to make decisions about treatment. It may be important to start treatment very quickly depending on your child’s disease and how sick they are right now. However, in some cases you may have days or even sometimes weeks to decide about a treatment choice.Be sure to ask your doctors how much decision-making time you have. If it feels too short, ask again to see if there is any leeway, or make a plan to talk to your child’s doctor or nurse or others to help you come to a decision.Your doctor wants you to have sufficient time to decide about a treatment plan or research study, but also wants you to know the best time to start treatment so your child will be helped the most.

Why Parents Make Treatment Decisions

Parents may feel that the doctors, with all their expert knowledge about cancer treatment, should make the decision about their child’s treatment. But if your child is under age 18, all medical procedures require your consent, or signed permission. The doctor will explain the recommended treatment plans, and the risks and benefits of each. You are entitled to ask questions until you feel confident that you understand everything and decide about whether or not to give consent. You can also ask your doctor “What would you do in my situation?” The doctor will tell you the treatment plans she or he recommends for your child’s treatment and why these are his or her recommendations. Your job is to make your decision based on a full discussion of potential benefits and risks.

What is Actually Being Decided? Medication? Treatment?
The doctor will talk to you about the best treatment available for your child’s type of cancer. There may be a research study (clinical trial) available that is comparing two (or more) treatment plans. The doctor will explain the usual or standard treatment plan for your child’s cancer. If there is a research study (clinical trial) available, the doctor will also explain how that treatment plan is different from the standard treatment and what they hope to learn from the study about possible improvements in cancer care for children who have your child’s form of cancer.

You are being asked to choose which treatment plan the doctor should use to treat your child or whether your child will participate in a clinical trial. If a clinical trial is available, you will be asked to decide whether or not your child will participate in the clinical trial. In this situation, you are not deciding which treatment plan your child would receive as part of the clinical trial – only whether or not your child will take part.

When Spouses Disagree

Parents often react differently to diagnosis and may have conflicting ideas about what to do. Talk with your child’s doctor or nurse about this and ask who would be the best person to mediate a constructive discussion. A social worker or psychologist may be suggested since they are trained to help people communicate better.

It may also help to put yourself in one another’s shoes to try to understand your differences. Remembering that you both want what’s best for your child can help even when you are annoyed or angry. Most parents have not faced life and death decisions about their child before cancer, so it can be helpful to simply recognize the shock and grief that you are both feeling – and that you each may react differently to these feelings.

Talking to supportive family and friends may help you vent some steam before talking more with your spouse or partner. Anything that helps lower your stress can make talking about options easier. Try taking a break to relax and clear your mind, walk around the block or just be by yourself for a little while, remembering that you are both working toward the same goal. Cancer is the enemy, not one another.

Some families also find it helpful to talk with other families who have been through the same thing. Some find that connecting to other parents through cancer online listservs such as ACOR help them sort out their feelings and issues. You can also ask your nurse or social worker to connect you to a hospital support group or another family who has been through a similar experience.

Informed Consent
Attending the Informed Consent Conference
Managing the Conference
Clinical Trials
Second Opinions