Relationships with Physicians
The following excerpt is taken from Chapter
of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 3rd
Edition by Nancy Keene, copyright 2002 by O'Reilly & Associates, Inc.
For book orders/information, call (800) 998-9938. Permission is granted to
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above source is included. The information in this article is meant to
educate and should not be used as an alternative for professional
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 in 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) 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
- 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 child's confidence in his doctor, a crucial component
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. 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 physician'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 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 said that it was safe and he would
allow his own daughter to have one. 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.
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