Facing childhood cancer is one of life’s greatest struggles. A skilled doctor you trust, who communicates easily and honestly with you, can greatly ease this struggle. If the doctor adds to your family’s discomfort rather than reducing it, you may have to change doctors. Changing doctors is not a step to be taken lightly, but it can be a great relief if the relationship has deteriorated beyond repair. It is a good policy to exhaust all possible remedies prior to separating and to examine your own role in the relationship to prevent the same problems from arising with the new doctor. Mediation by social service staff and improved communication can often resolve the issues and prevent the disruption of changing doctors.
Although there are many valid reasons for changing doctors, some of the most common are:
- Lack of qualifications
- Grave medical errors being made
- Poor communication skills or refusal to answer questions
- Serious clash of philosophy or personality; for example, a paternalistic doctor and a parent who wishes to be informed and share in decision making
It was late on a Friday night when our 2-year-old son was diagnosed with medulloblastoma at a local hospital in NYC. We were told that we had to move quickly on surgery, although we were not comfortable with the neurosurgeon on their staff who had a pompous demeanor and wasn’t a very good communicator. One of our friends, a pediatrician, took us aside and recommended the best pediatric neurosurgeon in the city. We called the doctor’s office and he arranged for a neurosurgery fellow to meet us first thing on Sunday morning to review the scans. It was that Sunday afternoon that the neurosurgeon called us from his home to discuss our son’s case. He was warm and caring and, we later found out, one of the top people in the country. We arranged for the transfer to his hospital on Monday and were greeted by an experienced neurology and neurosurgery team. We were lucky to find this out so soon after diagnosis since those first days were such a blur.
Many parents, fearing reprisal, choose to continue with a doctor in whom they have no confidence. Such reprisals rarely happen at large, regional children’s hospitals. Although there may be lingering bitterness or anger between parents and doctors, the child will continue to benefit from the best-known treatment. Children may actually suffer more from the additional family stress caused by a poor doctor/parent relationship than from changing doctors.
In a small treatment center like Group Health, there are only two pediatric oncologists. When parents change doctors, the situation becomes very tense because the terminated doctor still cares for their child nights, weekends, and when he is on call. I would not recommend changing doctors if there are only two doctors in the clinic. It’s probably better to change treatment centers if possible.
Once the decision to change doctors is made, parents must be candid. Either verbally or in writing, they should give an explanation for the change and make a formal request to transfer records to the new doctor. Doctors are legally required to transfer all records upon written request.
We’ve had wonderful docs, mediocre docs, and one who made a terrible mistake. We’ve had warm, compassionate docs, ho-hum docs (on a good day they’re nice, on a bad day they’re neutral), and we’ve met a couple of world-class jerks. Sounds pretty much like a slice of humanity, right?
Parents hold doctors to a different standard because the stakes are so high—our kids’ lives. But the reality is they are usually overworked, exhausted, and deal with newly diagnosed families on an almost daily basis, day after day, week after week, year after year. I can’t even begin to imagine the emotional toll that must take.
I tell my kids all human relationships are like a goodwill bank. If you make lots of deposits, an occasional withdrawal won’t be so noticeable. I tell my docs and my kids’ docs whenever things go right. I like to write, so I send many thank-you notes. When our pediatrician went on sabbatical, he took me into his office and showed me every mushy Christmas card I’d sent him lined up on the back of his messy desk.
I also have been known to bring in brownies for the office staff. We did this on my daughter’s last day of radiation and several people brushed away tears when they saw the thank-you note she drew—a picture of herself holding a Snow White and the Seven Dwarves audiotape. She listened to that during every radiation session because I’d promised that day’s radiation treatment would be over before the dwarves appeared.
I recently asked one of my favorite doctors (a pediatric oncologist who has incredible compassion) how many thank-you notes she had received from parents over the years. She said she could count them on two hands. I asked how many complaints, and she said, “You wouldn’t want to know.”
So, while I think docs should be called out for bad behavior and bad medicine, I also think we should continually acknowledge good medicine and good behavior. I’d like to encourage the good ones to stick around—new little innocents keep getting cancer every day.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites