Conflict is a part of life. In a situation where a child's life is threatened, such as childhood leukemia, the heightened emotions and constant involvement with the medical bureaucracy guarantee conflict. Because clashes are inevitable, resolving them is of paramount importance. A speedy resolution may result if you adopt Henry Fords motto, "Don't find fault; find a remedy."
Following are some suggestions from parents on how to resolve problems:
• Treat the doctors with respect, and expect respect from them.
I always wanted to be treated as an intelligent adult, not someone of lesser status. So I would ask each medical person what they wished to be called. We would either both go by first names or both go by titles. I did not want to be called 'Mom.'
• Expect a reasonable amount of sensitivity from the staff.
Soon after my daughter began treatment, I was walking by the open door of the residents' room which was directly across from the nurses' station. Written in large letters on the blackboard were the words "Have a blast of a day!" with a picture of a smiling leukemia blast drawn below. I felt like I had been punched in the stomach. I was too upset to say anything, but I always regretted not complaining.
• Treat the staff with sensitivity. Recognize that you are under enormous stress, and so are the doctors and nurses. Do not blame them for the disease or explode in anger. Be an advocate, not an adversary.
• If a problem develops, state the issue clearly, without accusations, and then suggest a solution.
I found out late in my daughter's treatment that short-acting, safe sedatives were being used for many children at the clinic to prevent pain and anxiety during treatments. Only parents who knew about it and requested it received this service. I felt that my daughter's life would have been incredibly improved if we had been able to remove the trauma of procedures. I was angry. But I also realized that although I thought that they were wrong not to offer the service, I was partially at fault for not expressing more clearly how much difficulty she had the week before and after a procedure. I called the director of the clinic and carefully explained that I thought that poor staff/parent communication was creating hardships for the children. I suggested that the entire staff meet with a panel of parents to try to improve communication and to educate the doctors on the impact of pain on the children's daily lives. They were very supportive and scheduled the conference. This is a classic example of how something good can come out of a disagreement, if both parties are receptive to solving the problem.
• Recognize that it is hard to speak up, especially if you never before have had to be assertive. But it is very important to solve the problem before it grows and poisons the relationship.
• Most large medical centers have social workers and psychologists on staff to help families. One of their major duties is to serve as mediators between staff and parents. Ask their advice on problem solving.
• Monitor your own feelings of anger and fear. Be careful not to dump on staff inappropriately. On the other hand, do not let a physician or nurse behave unpro-fessionally toward you or your child. Parents and staff members all have bad days, but they should not take it out on each other.
• Do not fear reprisal for speaking up. It is possible to be assertive without aggression or argument.
• There are times when no resolution is possible, but expressing ones feelings can be a great release.
My son and I waited in an exam room for over an hour for a painful procedure. When I went out to ask the receptionist what had caused the delay, she said that a parent had brought in a child without an appointment. This parent frequently failed to bring in her child for treatment, and consequently, whenever she appeared, the doctors dropped everything to take care of the child. When the doctor finally came in, an hour and a half later, my son was in tears. The doctor did not explain the delay or apologize, he just silently started the procedure. After it was finished, I went out of the room, found the doctor, and said, "This makes me so angry. You just left us in here for hours and traumatized my son. Our time is valuable, too." He told me that I should have more compassion for the other mother because her life was very difficult. I replied that he encouraged her to not make appointments by dropping everything whenever she appeared. I added that it wasn't fair to those parents who played by the rules; she was being rewarded for her irresponsibility. After we had each stated our position, we left without resolution.
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.