November 8, 2001
Second Opinions - A Patient's Thoughts
Barbara Jo Johnson
October 28, 2004
- I consider my oncologist to be a world class physician. His credentials are impeccable and his track record impressive. Yet, even given this wonderful situation, second opinions are a vital part of my health care decisions. Though I have actually sought second opinions rarely, they have given me comfort and have impacted my treatment.
Second opinions have been useful for me in two situations. First, when dealing with new doctors where I do not yet have a high level of trust, I need to know that their recommendations make sense. Secondly, a second opinion is helpful where there are two or more treatment alternatives to choose from and the choice is somewhat complex. Most Doctors inform their patients when a recommendation is controversial. A question I often ask is whether my Doctor believes that virtually any doctor would make the same recommendation. If he says no, that is a signal that I should consider a second opinion.
I am uncomfortable with the idea of going to two doctors completely independently, and then assessing what each is saying. In many situations, it is more constructive if doctor synergy can be obtained. It is very helpful when the two doctors can talk and agree on a recommendation. Two smart people considering a problem together will almost always have a better answer than either would alone. I am lucky in that my oncologist is very confident, non defensive, and doesn't claim to know everything. He has actually recommended that I obtain a second opinion and arranged for me to do so. In such cases, the second oncologist can act as a consultant to my doctor. Everybody is happy, and I get better decisions. Consequently, where practical, involving your primary doctor in your need to talk to a second doctor as early and often as possible is a good idea.
One frequent uncomfortable result of second opinions is that Doctors do not always agree. That doesn't mean that either is stupid or even wrong. We all know that sometimes there are no answers, and smart people often disagree. Unfortunately, the patient must decide whose advice to follow. I have only encountered a disagreement that the doctors could not resolve once, and I have no great, or even mediocre, solutions to this miserable dilemma. When I faced this problem my first step was to get the disagreeing doctors to talk with me together. It was a difficult discussion, but I felt listening to the two doctors both talk about each alternative gave me a much better grasp of the strengths and risks of each. Obviously, additional opinions can (and probably should) be sought. At some point, however, the patient must review the facts and make the best decision possible. When I made my decision, I didn't look back, I did the best I could. Following are some points and suggestions that result from my experience with second opinions:
Point 1. If possible, try to seek an opinion in another geographic region. I believe that can gives one access to a different viewpoint. If you cannot travel for a second opinion, try to talk to a Doctor in a different medical system.
Point 2. Prepare carefully for appointments. My preparation includes:
- a. Choosing the most appropriate Doctor or institution to visit. Generally I have relied on my own doctor and doctors who are friends to make suggestions. Obviously, the web and other guides are helpful. Programs such as the one I was exposed to at The University of Washington are very helpful. That program involved a one-day visit where I was examined and my history reviewed After that, Doctors representing all specialties of breast cancer treatment were involved in suggestions for my treatment. In addition, my films and biopsy slides were reviewed to insure that the written reports issued were accurate. Many hospitals have such comprehensive programs, and some insurance programs will pay for them.
When asking for recommendations for consulting physicians, describe the purpose of the second opinion and any important characteristics of the doctor you want to see. For example, if you are looking for a more aggressive or conservative point of view, that should be considered when choosing the source of the second opinion.
b. Determining the cost and related insurance coverage of the doctor/institution to be consulted.
c. Preparing a package for the doctor(s) being visited. I send one copy of this package prior to the meeting, and take an extra copy to the meeting. This package includes:
- A two page summary of my health history. The summary includes a description of my various cancers, how and when they were diagnosed, an explanation of treatment received, along with resulting side effects. Also included is a description of surgeries and other medical issues. My medical summary has evolved based on questions that I am frequently asked, and now includes information about the history of disease in my family, eating and exercise habits, as well as smoking and drinking habits. My oncologist has reviewed it for accuracy. You might add any personal information that you would like the Doctor to know.
The medical summary serves two purposes. First, it insures that Doctors have a full and complete description of health issues, and that important information is not omitted or forgotten. Secondly, it demonstrates to the Doctor that I am informed and interested in being a full participant. This facilitates a full and open discussion. Doctors almost always appreciate the organization. I insist that Doctors review it to insure that they are properly informed.
- d. Copies of all biopsy, reports from scans, consultations etc.
e. Copies of recent flow (treatment) sheets from my oncologist.
f. Relevant insurance information, copy of insurance cards etc.
d. Obtaining any films of scans, ultrasounds, biopsy slides, x-rays, etc. that might be useful. I tend to err on the side of taking too much rather than too little.
g. Making a list of questions that I would like to ask. I review these questions with my oncologist prior to my visit, and may send them to the consulting doctor in advance.
h. Deciding who might go with me to take notes and/or provide a second ear. Consider taking a tape recorder to tape the meeting.
- Point 3. Obtaining a second opinion before talking to the primary physician can be helpful. This is generally only possible where the patient is going to a new primary doctor. For example.when I was first diagnosed with metastatic disease, I visited The University of Washington before I selected my oncologist. Because I was better informed when I met my oncologist, our first discussion was more productive, I understood him better, and we got off to a better start.
Point 4. Consider having original tests (biopsies, scans, ultrasounds, etc.) reviewed. Many medical mistakes result, not because treatment decisions were wrong, but because the information on which the decisions are made is incorrect. Having a second doctor review slides, films, etc. is often prudent.
Point 5. Do not be afraid of upsetting your doctor by asking for a second opinion. I have yet to find a doctor disturbed by such a request; and if they are, that is a warning signal to you. I accompanied a friend to her oncologist. She was uncomfortable with her treatment and badly wanted to talk to another doctor. However, she was terrified that such an action would offend her doctor. I went to the meeting to be the bad guy and bring up the topic of a second opinion.
When I asked her doctor about a second opinion, he got very quiet, and I thought, he's mad, here it comes! He then said, "it never fails to amaze me, how many people come to me and never ask anyone else about my recommendations." Her mouth dropped open. After talking to a second doctor, she was reassured that she was receiving excellent treatment. Her relationship with her oncologist was immeasurably improved.
Point 6. You may feel that you need more than one or two opinions. It is important to do everything that you feel necessary to be comfortable with your decisions. However, at some point you must make a decision and go with it - right or wrong. Don't use seeking additional opinions as a delaying tactic.