Managing the Conference

It is very common for parents to be overwhelmed with the shock of diagnosis and so much new information about the disease and the treatment options. This can make it hard for anyone to concentrate. Also, the information can be quite complicated. Your doctor and the medical team know that this is very hard for parents.

This meeting is important because you will hear about the treatment choices for your child. You are now part of the team. You may be asked to make a decision about what kind of treatment your child gets and when there is more than one option available, this is hard to do. In order to understand the options, you may hear things about your child’s condition that are very painful to think about. The doctor will explain the possible risks of treatments which are sometimes scary. All of this information can add to the strong emotions you are already feeling. It is natural and doctors expect families to experience powerful feelings under these circumstances.

Although there have been great successes in treating children’s cancer, one of the hardest parts of this experience is understanding that no one is absolutely certain if the treatments will work. Nor do doctors know if bad side effects will occur in your child’s case. The uncertainty can add to the distress you may already be experiencing. The doctor’s job is to take the time you need and help you understand the information so you can make an informed decision. While starting your child’s treatment soon may be important, there is plenty of time for you to talk to the doctors in this meeting. They understand that this is very difficult and emotional for you.

Some suggestions from other parents:

  • Try to take notes and check them as you go along to make sure you understand what you are hearing.
  • Feel free to ask the doctors to repeat parts of what they have said or ask them to slow down or explain something again.
  • You might ask to read the consent form before the meeting so you have a chance to think about questions you want to ask. You can go over the consent form with a nurse before or after the consent conference.
  • You can ask to take a 5-10 minute break to collect your thoughts.

If the Doctor Talks too Fast or Uses Unfamiliar Words

Never hesitate to ask a doctor to slow down, repeat what they said, spell out terms, or explain things in more understandable language. Doctors who see so many children with cancer and who treat them on a daily basis sometimes forget that this is YOUR first experience with this frightening diagnosis. They are likely to use terms that only they understand, or they may speak too fast. However, they truly want you to understand what is happening. It is ok to ask a question as many times as it takes for you to understand the answer. You are a vital link in your child’s care. You are helping yourself and everyone involved by becoming a better-informed part of the team.

Your medical team knows that many families have a hard time absorbing the amount of medical information given after diagnosis, and they will encourage you to ask again and again if you do not understand something. Slowly but surely, the information will be easier to understand over time. You also can ask to have another conference to review the information again, or you can ask to talk privately to the nurse or doctor after the meeting.

English is Not My First Language

Please tell the health care team if English is not your first language and you would feel most comfortable learning information about your child’s cancer in your preferred language. Your hospital can provide language services for you. That may mean that a trained medical interpreter will be present during the conference or that a “language line” will be used. This means that an interpreter translates by telephone during the conference. A video relay service or sign language interpreter may be used if you are deaf or hard-of-hearing and use sign language.

You do not need to bring your own interpreter, and you should not ask a friend, family member or your child to interpret for you. This is because they may lack medical terminology and professional interpreter skills and could therefore misinterpret something by accident. Ask your nurse or social worker for language services for the consent conference and all consultation sessions with your doctor. Be sure to request an interpreter in advance to allow time for them to be notified so they can participate. Ask for materials such as discharge instructions written in your own language as well.

Sample Questions Parents often ask During an Informed Consent Conference
  • For more information about the diagnosis
  • For an explanation of test results
  • About treatment possibilities at other centers
  • What the doctor would do if this was their own child
  • About the meaning of medical words
  • How any pain or discomfort will be managed
  • About how treatment may affect their child’s ability to learn or to think clearly
  • Whether their child will lose their hair
  • Whether the treatments will cause later health problems
  • How much time they will have to spend in the hospital
  • What kind of special care they may need at home.
  • Whether the treatment will affect their child’s ability to have their own children.

Tips from Other Parents

Many parents find it helpful to carry a notebook and pen with them to jot down questions as they think of them, which might be at 3 o'clock in the morning. That makes it easier to recall questions when there’s an opportunity to ask them. CureSearch created the Hope & Help Journal for this purpose – ask your health care team about it.

You can record the consent conference so that you can listen to it later. Ask a nurse or social worker if anyone has a digital recorder you could borrow. If you have a laptop or a smartphone, there may be programs on your computer or "apps" that you could use to record the conference.

You may ask for a copy of any test results. Asking for copies of information shared with you is a good idea and will help you remember the information later. Many parents organize this type of information in a large 3-ring binder so it is all in one place.

Informed Consent
Attending the Informed Consent Conference
Making Treatment Decisions
Clinical Trials
Second Opinions