There are primarily three types of relationships that develop between physicians and parents:
• Paternal. In a paternal relationship, the parent is submissive, and the doctor assumes a fatherly role. The problem with this dynamic is that although medical personnel never intend harm, they are human and mistakes occur. If parents are not monitoring drugs and treatments, these mistakes may go unnoticed. In addition, parents are the experts on their own child and his reactions to drugs and treatments.
After we left Children's and returned home for outpatient treatment, the local pediatrician's nurse called and said, "Doctor wanted me to tell you that the blood results were normal." I thought that unlikely since she was on high-dose chemotherapy, so I politely asked for the actual numbers for my records. She read them off and my daughter's ANC (absolute neutrophil count—see Appendix B, Blood Counts and What They Mean) had dropped far below 500. I said, "Would you tell the doctor that her counts have dropped dramatically from last week?" She said in a frosty voice, "Doctor said they were fine." So I called Children's, and they told me to keep her at home, take her off all medications for a week, and then have her blood retested. I was glad that I paid attention to the counts.
A surprising number of parents are intimidated by doctors and express the 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 that is counterproductive. They seem to feel that the disease and treatment are the fault of medical staff, and they blame staff for any setbacks that occur. This attitude undermines the childs confidence in his doctor, 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 others domains and expertise. Here the doctor recognizes that the parents are the experts on their own child and are essential in ensuring that the protocol is followed. The parents respect the physicians 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 physician, and the physician feels comfortable that the family will comply with the treatment plan giving the child the best chance for a cure.
We had a wonderful relationship with the oncologist assigned to us. He blended perfectly 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."
Justin's oncologist had remarkable interpersonal skills. At our first meeting he said, "Justin has leukemia. There are two kinds of leukemia, and both of them are treatable." So right away he emphasized the positive. He then wrote on his notepad what all of Justin's blood counts were, he told us what normal counts were and explained clearly what we needed to do next. He was very reassuring. It has been years since that day, and he has always been very caring. He still frequently calls us on the phone.
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.
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