Your Cancer Questions

Six Reasons You Can't Get a Straight Answer From Your Oncologist -- and What to Do About It

How long have I got, Doc? Am I going to die? How much is it going to cost to treat this cancer? Should I get a second opinion? These are among the many questions that you were afraid to ask your oncologist, or asked and did not receive a direct answer. Why is it that you can't get a straight answer from your oncologist?  Here are six reasons why, and what to do about it.

1.  Your doctor does not have enough time to sit and talk to you

Oncologists today rarely have the chance to take off their white coats, sit back, and have a heart-to-heart chat with a patient. I consider these moments a privilege; they are all about what it means to be a doctor. If I stop to listen to what a patient is saying I can better serve his needs. We long-time practitioners struggle to free up time for these lengthy but valuable patient sessions. Sadly, the next generation of doctors may never have this privilege. Why? Talking to patients takes up time, and in today's medical practice, time is too valuable to spend on patients. Oncology practices are structured to use the doctor's time to make as much money as possible for their employers--and the oncologist has little say in the matter since he is no longer in charge. At risk of losing her job, a specialist may be required to see sixteen to twenty patients in a day, with an average visit of 15 minutes or less. Worse yet, much of this time is used by a nurse specialist or Physician Assistant, with only a cursory visit from the doctor. The practice administrator knows that more income is generated by giving chemo than by charging for face-to-face time.That is why an oncologist is under tremendous pressure to spend a little time as possible with a patient. Lengthy phone calls, emails, and family conferences also take up time that could be better used to see more patients (according to the practice manager). Doctors who don't play along can lose their jobs, if they don't quit first. This unfortunate situation is unlikely to be rectified until the entire medical system is overhauled.

What to do about it:  Ask for more time. Tell your doctor that you have serious issues to discus, and request an additional clinic visit just for a family conference with the doctor--not with a nurse, PA, or social worker.

2.  Your doctor doesn't understand what you are really asking

You may be too embarrassed to ask your doctor directly, or feel you can't handle the terminology, or may not even realize that you have a question. A very perceptive physician can tell that there is something on your mind and draw it out of you-- for example, your jokes about virility may indicate a concern for chemo effects on your sex life, or references to retirement could reflect concerns about your ability to work after treatment. But a busy doctor, or one who has no rapport with you, may not recognize that you have unanswered questions.

What to do about it: Think carefully about burning issues on your mind before you go to your clinic visit, and jot down a few notes to bring along. Sometimes it's easier to mention problems to the nurse first, who is more used to discussing medical issues with patients using lay language, and ask him or her to bring it up to the doctor.

3.  You didn't understand your doctor's answer

There is a lot of jargon that an average patient does not understand as he makes their way through a system of baffling complexity. Patients are afraid, or intimidated, or forget their questions, or don't want to reveal that they don't understand a word of what was said. Studies have shown that misunderstanding can be so extreme that a person's perception of what the doctor said may be the exact opposite of what was meant! Some misperceptions are based on anxiety, others on medical ignorance—and at other times the patient only heard what he wanted to hear.

What to do about it: Take notes at every clinic visit, use a voice recorder, or bring another person with you to listen and compare notes. This is especially important at visits that discuss test results or treatment decisions. Your health portal (electronic chart) may give you the opportunity to contact your doctor and clarify the answer. Take advantage of it.

4. Your doctor thought she answered your question when she said, "because that's the way we do things."

At times you may not be satisfied with your doctor's answer. Perhaps you feel there are other answers or other alternatives. Perhaps you don't trust your doctor. Maybe you understand the correct answer, but don't like your doctor's attitude. And sometimes you just don't get along. Although your doctor may be the top in her field, and her answer was correct "by the book," the personality clashes may lead to a loss of trust, which in turn may interfere with your ability to be a good patient, and to receive good care.

What to do about it: If personality issues are interfering with your medical care, consider getting a second opinion or even changing doctors. The easiest way to do this is to ask to make an appointment with another physician in the practice. Alternatively, you can easily find a new physician in another clinic and request a second opinion. Changing providers is your right as a patient, and your clinic is obliged to provide copies of your records. Insurance will usually pay for a second opinion about treatment, diagnosis or surgery. Don't worry about hurting your doctor's feeling--your first priority is your own survival. You doctor will handle this professionally, and may be happy to give you up if you both don't get along.

5. Your doctor doesn't like giving bad news and avoids it as much as possible.

The relationship that a doctor has with a patient is delicately balanced, and it's an important part of the healing process. A doctor know he is not only providing medicine—he is providing comfort, relief, encouragement, trust, and . . . hope. At times an oncologist will downplay the bad news or side effects he wants to avoid undue concern for the patient or family members. This may appear to be evasive.

One reason doctors don't talk to their patients is that they don't like to give bad news--we are only human in this regard. Patients don't want to hear that they are dying, and doctors don't want to tell them. Recent studies have shown that most cancer doctors avoid discussing end of life care and death until it is too late to make realistic plans for advanced directives, hospice and terminal care. Professional societies like the American Society of Clinical Oncology have begun to take steps to help doctors and patients face these issues together, developing guidelines for care planning and encouraging more open discussion. But there is a long way to go.

What to do about it: If you think your doctor is avoiding bad news, request to have a few minutes alone with the doctor, without anyone else present. This will allow the doc to speak freely. One way to broach a difficult subject is to bring it up neutrally, saying, for example, "May I speak with you alone about my end-of-life and living will documents?"  Doc will get the hint.

6. Your doctor doesn't know the answer

Yes, medical science does not know everything!  Far from it--there is so much yet to be learned. And of course, yours might not have the details at hand. A good doctor will answer, "That's a good question and I don't know the answer, but I will look into it and get back to you by email or at our next visit."

The other reason you doctor does not know the answer is that your "doctor" is really not a doctor, but a mid-level provider who doesn't have the knowledge or experience to answer your question. Of course they care about you, and do the best they can, but a few years of Nurse-Specialist or Physician Assistant courses cannot compare with 4 years of med school, 3 years of residency, and 3 years of medical oncology training and years of practice.

What to do about it:  If you are looking for more answers, then consider getting a second opinion, see #4 above. If you want to see more of your doctor and less of your alternative provider, then ask specifically to see the doctor. Be insistent, and talk to the clinic administrator if necessary. If you are still frustrated by the lack of a physician input, then consider making a permanent change to another practice, and make your displeasure known on the patient rating sites and on the clinic surveys that are sent to you.

(Excerpted and revised from the book, Ask An Oncologist: Honest Answers to Your Cancer Questions)

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