Childhood Cancer

Clear and frequent communication is the foundation of a positive doctor/parent relationship. Doctors need to be able to explain clearly and listen well, and parents need to feel comfortable asking questions and expressing concerns before they grow into grievances. Nurses and doctors cannot read parents’ minds, nor can parents prepare their child for a procedure unless it has been explained well. The following are parent suggestions about how to establish and maintain good communication with your child’s healthcare team.

• Tell the staff how much you want to know.

I told them the first day to treat me like a medical student. I asked them to share all information, current studies, lab results, everything, with me. I told them, in advance, that I hoped they wouldn’t be offended by lots of questions, because knowledge was comfort to me.

• Inform staff of your child’s temperament, likes, and dislikes.

• Encourage a close relationship between your child and his doctor, and don’t let anyone talk in front of your child as if she is not there. Marina Rozen observes in Advice to Doctors and Other Big People:

“The best part about the doctor is when he gives me bubble gum. The worst part is when he’s in the room with me and my mom and he only talks to my mom. I’ve told him I don’t like that, but he doesn’t listen.”

• Try to form a warm relationship with your child’s nurse. Most children’s hospitals assign each patient a primary nurse who will oversee all care. Nurses usually possess vast knowledge and experience about both medical and practical aspects of treatment. Often, nurses can resolve misunderstandings between doctor and parents.

We found that sitting down and talking things over with the nurses helped immensely. They were very familiar with each drug and its side effects. They told us many stories about children who had been through the same thing and were doing well years later. They always seemed to have time to give encouragement, a smile, or a hug.

• Ask for definitions of unfamiliar terms. Repeat back the information to ensure that you understood correctly. Don’t hesitate to write down answers or tape-record conferences. If taping, it is helpful to say, “I hope you don’t mind, but I have trouble remembering all of the information. This will help me keep everything straight.” That way, the doctors are not put on the defensive and you’ll have what you need.

• Keep a written list of questions by the bedside. This practice will help you remember what to ask and prevent lots of follow-up conversations.

• Make sure that every person who comes in the room thoroughly washes his or her hands. Hospitals are germy places and doctors, nurses, physical therapists, and many others go from room to room all day. So, politely stop anyone from touching your child or your child’s belongings (no hugging that teddy bear) until hand washing is complete.

• Make sure you know what medication or treatment is scheduled for each day. Make the final checks on all drugs whenever possible (check that it is the right drug, the correct dosage, and that your child’s name is on the syringe or bag).

When my daughter was in the hospital one time, the nurse came in with two syringes. I asked what they were, and she said immunizations. I said that it must be a mistake, and the nurse said that the orders were in the chart. So I checked my daughter’s chart, and the orders were there, but they had another child’s name on them.

• Seek the best staff person to perform a procedure. The medical team includes many specialists: doctors, nurses, physical therapists, x-ray technicians, and more. At training hospitals, many of these people will be in the early stages of their careers. If a procedure is not going well, you can tell the person to stop and ask for a more skilled person to do the job.

• Know your rights, and the hospital’s. Legally, your child cannot be treated without your permission. If a doctor suggests a procedure that you do not feel comfortable with, keep asking questions until you feel fully informed. You have the right to refuse the procedure if you do not think it is necessary.

One day in the hospital, a group of fellows came in and announced that they were going to do a lung biopsy on Jesse. I told them that I hadn’t heard anything about it from her attending, and I just didn’t think it was the right thing to do. They said, “We have to do it,” and I repeated that I just didn’t think it needed to be done until we talked to the attending. They seemed angry, but we stood our ground. When the attending came later, he said that they were not supposed to do a biopsy because the surgeon said it was too risky of an area in the lung to get to.

If the hospital staff feels that you are wrongfully withholding permission for treatment, they can take you to court. All parties should remember that the most important person is the child.