Clear and frequent communication is the lifeblood 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 a parents mind, nor can a parent prepare her child for a procedure unless it has been explained well. The following are parent suggestions on how to establish and maintain good communication:
• Tell the staff how much you would like 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.
If the doctors at Children's told me to do something, I didn't question it. I did it because I trust 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 the young persons dignity. Do not let anyone talk in front of the 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 patient a primary nurse who will oversee all care. Try to form a close relationship with your childs nurse. Nurses usually possess vast knowledge and experience about both medical and practical aspects of cancer treatment. Often, the nurse can rectify misunderstandings between doctor and parents.
The nurses at Children's were splendid. They were gentle with both kids and parents. Once, when I asked to have Christine's spinal done by the fellow rather than the resident, the fellow said in a nasty voice, "Well, we'll see about that!" and he disappeared. He didn't come in for two hours; my child was crying, we missed an appointment with radiation, and everyone was upset. The nurse ran back and forth between the fellow and us trying to get it resolved. In the end—after the resident had done the spinal—she hugged me, and told me that she was going to talk with the fellow because his actions were unacceptable.
• 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.
• Cooperate. If your hometown pediatrician will handle all of your childs outpatient treatment, find ways to facilitate communication between oncologist and pediatrician.
Before we left Children's, I called our pediatrician to ask what paperwork he had received and what he needed. He had received nothing, so he gave me a list of what he needed, which I was able to get from the primary nurse and carry home with me.
When maintenance started, I asked if there was anything that he thought might help keep his staff aware of the cycles of blood work and chemotherapy orders. He asked me to write a letter at the beginning of every three-month cycle listing the day of the cycle, the date, and the treatment. They put this in the front of her chart, and it helped keep the orders and communication flowing smoothly.
• Go to all appointments with a written list of questions. This prevents the exhausted parent 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 that it was understood correctly. Writing down answers or tape recording conferences are both common practices.
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.
• Some parents want to read their child's medical chart to obtain more details on their child's condition and to help in formulating questions for the medical team. Often, the doctor or nurse will let the parents read it in the child's hospital room or in the waiting room at the clinic. Most states and provinces have laws that allow patient access to all records. You may have to write to the doctor asking to review the chart and pay any photocopy costs.
• If you have questions or concerns, discuss them with the resident. If she is unable to provide a satisfactory answer, ask the fellow or attending physician assigned to your child.
• The medical team includes many specialists: doctors, nurses, physical therapists, nutritionists, x-ray technicians, radiation therapists, and more. At training hospitals, many of these persons will be in the early stages of their training. If a procedure is not going well, the parent has the right to tell the person to stop, and to request a more skilled person to do the job.
At our hospital, family practice residents rotate through, and are often assigned to do the spinal taps. My son was on a high-dose methotrexate protocol, which required a rescue drug to be administered at a certain time. Once, the resident tried for an hour to do the tap, and just couldn't do it. My son was very late getting the rescue drug, and I was worried. Later, I requested a conference with the oncologist and asked him to perform the spinal taps in the future to prevent the residents from practicing on my child. He agreed, but I didn't intervene that first time and I felt very guilty
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. Legally, your child cannot be treated without your permission. If a procedure is proposed that 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 that 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 feels that you are wrongfully withholding permission for treatment (e.g., you reject standard treatment in favor of an unproven remedy, or you are so concerned about side effects that you are endangering the child's chance for cure) they can take you to court. The child is the important person in this equation, and both the hospital and the parents have input once you step into the legal arena.
Don't let problems build up until there is a long laundry list of grievances.
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 clinic. This would result in worry for me and a delay in changes of 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 three years. The lab would fax the doctor the results, but call me. Then I would call the 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 doctor'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.
• 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.
A nurse thought Arielle had a double-lumen catheter and put two incompatible drugs through her single lumen line. It immediately turned to concrete. She had to have the line removed. When they took it out, we saw the drugs had precipitated and formed what looked like little tablets. If this had become dislodged into her bloodstream (a very real possibility) it could have been fatal. Scary!
• Be specific and not confrontational when describing problems. Allow room for the staff to save face. For example, "My daughter has to go to radiation after this spinal tap. I want it to go smoothly, so I would appreciate it if Dr. Smith, the attending, does the procedure instead of the intern," rather than, "I'm not going to let that intern near my daughter again." Another example is, "My son gets very nervous the longer we wait for our appointment. We have waited over two hours for our last two appointments. Could we call ahead next time to see if the doctor is on schedule?" rather than, "Do you think your time is more valuable than mine?"
• If you have something to discuss with the doctor that will take some time, request a conference. These are routinely scheduled between parents and physicians, and should allow enough time for a thorough discussion. Grabbing a busy doctor in the hallway is not fair to her, and may not result in a satisfactory answer for you.
• Do not be afraid to make waves if you are right or to apologize if you are wrong.
When Meagan was in the hospital during induction, 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 Meagan'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.
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.
Erica's doctor would sometimes call up just to say, "How's my little chickadee?" He really cared. It touched me that he took the time to call, and I told him that I appreciated it.
Early in my daughter's treatment, we changed pediatricians. The first was aloof and patronizing, and the second was smart, warm, funny, and caring. He was a constant bright spot in our lives through some dark times. So every year during my daughter's treatment, she and her younger sister put on their Santa hats and brought homemade cookies to her pediatrician and nurse. This year was the first time she was able to walk in, and she looked them in the eye and sang, "We Wish You a Merry Christmas." Her nurse went in the back room and cried, and her doctor got misty-eyed. I'll always be thankful for their care.
The National Coalition for Cancer Survivorship (NCCS) has developed an excellent resource for communicating with healthcare providers. This audio resource program, called the Cancer Survival Toolbox, is available free by request. Its goal is to "help develop practical tools in daily life" to deal with a cancer diagnosis and treatment. Audiotapes include the topics: Communicating, Finding Information, Making Decisions, Solving Problems, Negotiating, Standing Up for Your Rights, and Finding Ways to Pay for Care. Call the NCCS at: (877) 622-7937, or email your request to: [email protected] cansearch.org.
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