Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

Types of relationships

Three types of relationships tend to develop between doctors and parents.

  • Paternal. In a paternal relationship, the parent is submissive, and the doctor assumes a parental role. This dynamic may seem desirable to parents who are uncomfortable or inexperienced in dealing with medical issues, but it places all the responsibility for decisions and monitoring on the doctor. Doctors are human. If your child’s doctor makes a mistake and you are not monitoring drugs and treatments, these mistakes may go unnoticed. You are the expert on your child and you know best how to gauge his reactions to drugs and treatments.

I once asked a fellow about my daughter’s blood work. She literally patted me on the head and said it was her job to worry about that, not mine. I said in a nice voice that I thought it was a reasonable question and that I would appreciate an answer.

Some parents are intimidated by doctors and fear that if they question the doctors their child will suffer. This type of behavior robs the child of an adult advocate who speaks up when something seems wrong.

  • Adversarial. Some parents adopt an “us against them” attitude, which is counterproductive. They seem to feel the disease and treatment are the fault of the medical staff, and they blame staff for any setbacks that occur. This attitude undermines the child’s confidence in her doctor, which is a crucial component for healing.

I knew one family who just hated the Children’s Hospital. They called it the “House of Horrors” or the “torture chamber” in front of their children. Small wonder that their children were terrified.

  • Collegial. This is a true partnership in which parents and doctors are all on the same footing and they respect each other’s domains and expertise. The doctor recognizes that the parents are the experts about their own child and are essential in ensuring that the protocol is followed. The parents respect the doctor’s expertise and feel comfortable discussing various treatment options or concerns that arise. Honest communication is necessary for this partnership to work, but the effort is well worth it. The child has confidence in his doctor, the parents have lessened their stress by creating a supportive relationship with the doctor, and the doctor feels comfortable that the family will comply with the treatment plan, thus giving the child the best chance for a cure.

We had a wonderful relationship with our neuro-oncologist. He perfectly blended the science and the art of medicine. His manner with our daughter was warm, he was extremely well-qualified professionally, and he was very easy to talk to. I could bring in articles to discuss with him, and he welcomed the discussion. Although he was busy, he never rushed us. I laughed when I saw that he had written in the chart, “Mother asks innumerable appropriate questions.”

Another mother relates a different experience:

We tried very hard to form a partnership with the medical team but failed. The staff seemed very guarded and distant, almost wary of a parent wanting to participate in the decisions made for the child. I learned to use the medical library and took research reports in to them to get some help for side effects and get some drug dosages reduced. Things improved, but I was never considered a partner in the healthcare team; I was viewed as a problem.

A pediatric oncologist shares her perspective:

All parents are different and have different coping styles. Some deal best with a lot of information (lab results, meds, study options) up front, while others are overwhelmed and want the information a little bit at a time. There is no way for the doctor to know the parents’ coping styles at the beginning. (Even the parents may not yet know!) So if they let the doctor know how much information they want or don’t want, it is very helpful.

Choosing a hospitalCommunication

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