Working with the healthcare team

Your child’s healthcare team is there to treat your child and to help you and your family. Building a good relationship takes time and effort on both sides. Good communication between you, your child with cancer and the healthcare team is key.

The healthcare team relies on you to make and keep appointments on time, give the proper medicines at the appropriate times, prepare your child for procedures and watch your child for any illness or side effects.

You rely on the healthcare team for medical knowledge, expertise in performing procedures, good judgment, caring for your child and clear communication. But you know your child best and can help with sharing how they are coping and any side effects, concerns or problems. You can help teach the healthcare team how they can best help your child. You can also help with keeping communication flowing between all members of the healthcare team.

The following are suggestions from parents on how to get the most out of the relationship with your child’s healthcare team:

• Tell the doctor how much you would like to know. Some parents like to know it all and want to be very involved in decision-making. Others only want to know what they have to and don’t want to research what the team recommends.
• Tell the healthcare team about your child’s temperament, likes and dislikes. You know your child best. If you have suggestions that will help your child cooperate with treatment, share them.
• Let your healthcare team know of any doubts or concerns you have.
• Encourage a close relationship between the healthcare team and your child. Help your child develop trust in their healthcare team.
• Go to all appointments with a written list of questions so you don’t forget something important.
• Ask for definitions of unfamiliar terms and repeat back the information to make sure that you understand it. Writing down or recording conversations can be useful.
• Keep a journal with the names of each member of the healthcare team, questions that you have, dates of each visit and conversation, hospital stays, tests, treatments and any medicines given to your child, including the time it was given.
• Bring a family member or friend to visits. They can help you remember what the doctor said and can provide emotional support.
• Try not to overwhelm the healthcare team. Be realistic about how much time they can spend with each family. Let them know when you need more time. If you are looking for specific information on a topic, ask the healthcare team to recommend some reliable resources.
• Be focused during the visit. Turn off your cell phone. Leave other children with your spouse, a babysitter or a relative if possible.
• Follow the rules. Arrive on time or a few minutes early. Give appropriate notice if cancelling or rescheduling the appointment.
• Check with your doctor about what you should do if you have questions or concerns in between visits. Some questions can be answered over the phone.

For many cases of childhood cancer, treatment usually starts as soon as possible after a diagnosis is made and all the tests are completed. But in some cases it’s hard to reach a diagnosis or you may have a great deal of fear and uncertainty about what you’ve been told. You may want to get a second opinion, which is another doctor’s point of view. Sometimes the first doctor may even recommend getting a second opinion if they are unsure about the diagnosis or treatment. A second opinion can help to confirm that the treatment being offered is the best available for your child. It can also make you aware of other treatment options to discuss with your child’s doctor.

Doctors usually understand this and will often help you get that second opinion. It is best to do this with the guidance of your child’s primary oncologist. Getting a second opinion in this way means that any consulting doctor gets quick and full access to all test results and helps avoid your child having the same test twice.

If you are thinking about getting a second opinion:

• Be honest with the doctor. Don’t hide the fact that you would like to find out what another doctor thinks before deciding on treatment.
• Let the doctor know that a second opinion will help you to make sure that you are making the right treatment decisions.
• Ask the doctor for suggestions of other doctors to consult. Get a referral from the first doctor if you need to.
• Ask the first doctor to provide medical records, test results or even biopsy samples to help the second doctor make recommendations.

You have the right to ask for other opinions about your child’s diagnosis or treatment plan. But be careful about how far you take this. Sometimes parents have a hard time accepting the second opinion and go on to try and get even more opinions. It’s important to be comfortable with your decisions, but it’s also important to start treatment as quickly as possible after diagnosis.

Sometimes parents of children with cancer think about changing doctors. It’s not an easy position to be in. It’s hard if you don’t feel comfortable with the doctor, but you may not have that many other options. First try to improve things. It may be helpful to schedule some time to talk things over with the doctor. Tell the doctor that you are concerned about how you are communicating with each other. Try to work things out by being open and honest before deciding that nothing can be done to improve the relationship. It may also help to talk to someone else on the team, such as a nurse, patient advocate or psychosocial professional, about the problem.