Childhood Cancer

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Childhood Cancer

Communication

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.

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If the doctors at Children’s told me to do something, I didn’t question it because I trusted them.

•  Inform the staff of your child’s temperament, likes, and dislikes. You know your child better than anyone, so don’t hesitate to tell the clinic staff about what works best.

Whenever my daughter was hospitalized, I made a point of kindly reminding doctors and nurses that she was extremely sensitive, and would benefit from quiet voices and soothing explanations of anything that was about to occur, such as taking temperatures, vital signs, or adjustments to her IV.

•  Encourage a close relationship between doctor, nurse, and child. Insist that all medical personnel respect your child’s dignity. Do not let anyone talk in front of your child as if she is not there. If a problem persists, you have the right to ask the offending person to leave. 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.

•  Most children’s hospitals assign each child a family-centered team, including a primary nurse. Try to form a close relationship with your child’s nurse. Nurses usually possess vast knowledge and experience about both medical and practical aspects of cancer treatment. Often, the nurse can rectify misunderstandings between doctors and parents.

•  Children and teenagers should be included as part of the team. They should be consulted about treatments and procedures and be given age-appropriate choices.

Leeann’s doctor has been great. She knows how to talk to kids without talking down to them. She would take the time during her hospital rounds to help Leeann with her homework and laugh at all of our stupid jokes. A good sense of humor was a must for all of us.

•  Coordinate communication. If your hometown pediatrician will handle bloodwork or other routine testing, find ways to facilitate communication between the oncologist and pediatrician.

We had a problem with the pediatrician’s office not calling me with the results of my daughter’s blood work in time for me to call the hospital ped onc clinic. This would result in worry for me and a delay in changes to her chemotherapy doses. I told the pediatrician’s nurse that I knew how busy they were and I hated having to keep calling to get the results. I asked her if it was possible for them to give the lab authorization to call me with the results. They thought it was a great idea, and it worked for years. The lab would fax the doctor the results, but call me. Then I would call the hospital clinic and get the dose changes. The clinic would then fax that information to the pediatrician’s office. It was a win/win situation: the pediatrician’s office received no interruptions, they got copies of everything in writing, and I got quick responses from the clinic on how to adjust her meds to her wildly swinging blood counts.

•  Go to all appointments with a written list of questions. This prevents you from forgetting something important and saves the staff from numerous follow-up phone calls.

•  Ask for definitions of unfamiliar terms. Repeat back the information to ensure you understood it correctly. Writing down answers or recording meetings are both common practices.

•  Some parents want to read their child’s medical chart to get more details about their child’s condition and to help in formulating questions for the medical team. Sometimes the doctor or nurse will let the parents read the chart in the child’s hospital room or in the waiting room at the clinic, but some hospitals have policies that prohibit this. As access to online medical records becomes more common, you may be able to log in to the chart from home to read the physicians’ notes, and keep track of blood counts and other test results. Most states and provinces have laws that allow patient access to all records. If you want a copy of your child’s chart, you may have to write to the doctor asking to review the chart and pay any duplication costs. Keep in mind that some medical systems now restrict parental access to the full medical record if the child is a teen; this is done to protect your child’s confidential medical discussions with his physician. You teen can choose (or not) to sign a form allowing you complete access to the records.

•  If you have questions or concerns, discuss them with the nurses or residents. If they are unable to provide a satisfactory answer, ask the fellow or attending doctor assigned to your child.

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.

•  The medical team includes many specialists: doctors, nurses, child life specialists, social workers, physical therapists, nutritionists, x-ray technicians, radiation therapists, and more. At training hospitals, many of these people will be in the early stages of their training. If a procedure is not going well, you have the right to tell the person to stop and to request that a more skilled person do the job.

While I truly supported the teaching hospital concept, it was difficult to deal with a first-year resident who couldn’t do a spinal tap or insert an IV. We had a tendency to lose patience rather quickly when our child was screaming and the doctor was getting impatient. More than once we requested a replacement and had someone else do the test.

•  Know your rights—and the hospital’s. Legally, your child cannot be treated without your permission. If the doctor suggests a procedure you do not feel comfortable with, keep asking questions until you feel fully informed. You have the legal 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.

However, if the hospital staff feels you are endangering the health of your child by withholding permission for treatment, they can take you to court. All parties must remember that the most important person in this circumstance is the child.

•  Use “I” statements. For example, “I feel upset when you won’t answer my questions,” rather than, “You never listen to me.”

•  If it helps you feel more comfortable, keep track of your child’s treatments to check for mistakes.

Few children were on the same protocol at the time my daughter was being treated. The attendings always knew exactly what was supposed to be done, but the fellows sometimes made mistakes. I was embarrassed to correct them, but I just kept reminding myself that they had dozens of protocols to keep track of, and I had only one.

•  Be specific and diplomatic when describing problems. For example, “My son gets very nervous if we have to wait a long time for our appointment, which makes him less compliant with the doctor. Could we call ahead next time to see whether the doctor is on schedule?” rather than, “Do you think your time is more valuable than mine?”

Noah was 5 months old and receiving radiation treatment for a small tumor (retinoblastoma) located adjacent to the optic nerve. I felt very strongly that an infant should be able to wake up to his mother (and that not having the mother present was emotionally damaging to the baby). I was upset that the anesthesia team was not honoring this concern, and I was simply told, “He won’t remember.” I made the point that “He may not remember here,” pointing to my head, but that “He does remember here,” pointing to my heart. I arranged to be called to the treatment room shortly before he awakened from anesthesia.

•  If you have something to discuss with the doctor that will take some time, request a conference or a family meeting. These are routinely scheduled between parents and doctors and should be scheduled to allow enough time for a thorough discussion. Grabbing the attention of a busy doctor in the hallway is not fair to her and may not result in a satisfactory answer for you.

One technique I use to keep from forgetting what I want to say at the doctor’s appointment is to type out an agenda for the appointment. I also make a copy for the doctor. This helps me stay calm and focused on the agenda, and it gives me and my doctor a written record of what our concerns were, and what was discussed during the appointment.

•  Do not be afraid to make waves if you are right or to apologize if you are wrong.

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.

•  Show appreciation.

I sent thank-you notes to three residents after my daughter’s first hospitalization. The notes were short but sweet. I wanted them to know how much we appreciated their many kindnesses.

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I always try to thank the nurse or doctor when they apologize for being late and give the reason. I don’t mind waiting if it is for a good cause, and I feel they show respect when they apologize.

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