“How Do I Say This Nicely? Your Oncologist Wasn't Following Guidelines”

Rebecca Bechhold, MD

My group tries very hard to adhere to sound guidelines as much as is reasonable, many are pretty easy and straightforward. The National Comprehensive Cancer Network (NCCN) recommendations for follow-up testing for most diagnoses are easy to support. So when you start seeing a patient for the first time who has been treated elsewhere and the previous oncologist has not followed standard protocol, how do you present this new way of doing things without alienating the patient or sounding critical of the previous doctor?

Patients move from cities, neighborhoods, or change insurance and end up seeing a new doctor. No doubt, they have extreme allegiance to their original doctor, so they are nervous about a new face and place. They probably knew the front desk staff, medical assistants, and nurses in the old office and found support and security in the routine that has become normal for them. Now, they are faced with a change in the basic protocol for a life-threatening disease.

The first encounter with a new patient like this is a delicate operation. No matter how much data they provide in the form of medical records, I always find myself needing a little bit more background, so the questions start. These inquiries are not meant to look for a mistake in their care, but there is always some nuance to the personal relationship between a patient and doctor. I want and need to know how this person interfaced with the previous oncologist. If you seem too nosy, they think you are looking for a misstep in their treatment and they become wary.

Even if I would not have chosen the exact regimen for treatment, I am interested in how they came to that decision. That part is usually over, and I just have to document what was given and how it was tolerated. But I am frequently faced with breast cancer patients who are getting surveillance testing far beyond any scope of current recommendations. Tumor markers, yearly chest x-rays, sometimes bone scans, and many times routine complete blood count and chemistries every 3 months for years. I recently began seeing a patient who was 8 years past her original stage I diagnosis, and she was still coming in every 3 months with full blood work. She was a healthy woman no longer on medications for breast cancer and followed by her very competent primary care physician for mild hypertension. How do I tell her she only needs to see me once a year (she already sees her breast surgeon yearly with her mammogram) and that, per NCCN guidelines, I would not be doing blood tests or scans unless she had signs or symptoms suspicious for recurrent disease?

I was very careful with that patient to avoid pointing out any problem with her previous follow-up schedule. I just treated it all as a new patient and explained how we do our follow-up in this practice. I keep a copy of the NCCN guidelines in the exam room so that I can review them with the patient when they start into a follow-up routine after active therapy. I offer them a copy to keep in their educational folder, mainly to show friends and family who invariably ask why the patient isn’t being scanned head to toe on a regular basis for the rest of her life. Because, you know, it just makes them feel better. Once they see that “official” statement, they are much more secure that we are doing things the right way.

So why do so many doctors ignore those simple guidelines? A recent article suggested that oncologists overuse red cell growth factors for profit. I don’t know if that is true. I do not think there is enough if any profit from simple blood tests and a plain chest x-ray to make that the driving force behind overtesting. Is it so the doctor can give good news? “Yes, all your tests came back normal.” That seems lame. We all know you can be stage IV with normal blood work. Is it because it makes the patient feel like you are “doing something”? Like giving a prescription for an antibiotic when you know it is a viral illness because you know the patient will be mad if you don’t. If a patient asks me why their previous doctor ordered all those tests, I just say I don’t know and move the conversation forward without judgment.

I know I stray from guidelines, even though I try to adhere. I hope we all try a little harder to follow those that make sense and provide the best, most cost-effective care to our patients. It would make some conversations so much easier.