Welcoming Guest Writer Florence Ferreira

Florence Ferreira and I have been friends since 1979. This week, she shared with me an article that she has put together as a six year survivor of breast cancer. I found her work to be valuable to me, one who is living with HIV/AIDS, and confirmed in my experiences with my mom's care. I suspect Florence's work might transcend just about every medical therapeutic area. Please read and leave feedback for my dear friend, Florence.

Ron Hudson

How to Survive the Doctor’s Office

I have been living with breast cancer for six years. Yet, the disease and the prospect of facing death have never triggered as much anxiety as have my visits to the doctor’s office. The dramatic drainage of life force, the feeling of dehumanization I experience in this cold, mechanistic and disempowering atmosphere seem more powerful and toxic than the cancer itself. It probably is at some subtle level. For three years, in spite of my serious condition, I deserted doctors’ offices altogether. If I needed to gather all my emotional strength in order to heal my body, I couldn’t afford to spend time in such a noxious environment. Ultimately, if I were going to die, this would be last place where I would want to spend my final months.

But when my condition worsened I decided to give it another try; this time with a new mindset. If the system was not going to change and I needed the system, then I needed to change.

I started to prepare for my doctor visits the way I would prepare for a job interview. From the selection of the right doctor to the way I projected myself, the effectiveness of my communication and the organization of my records, I worked on every tiny detail that could help make each of my visits to the doctor as stress-free and empowering as possible. Here are some of the strategies that have contributed to the success of my plan.

CHOOSING THE DOCTOR

§ Choose a person-able doctor. When selecting a doctor, reputation is the first quality we seek. That is good but it is not enough. The personal connection we feel with our doctor is as important as our trust in his/her competency. We wouldn’t give our money to a financial advisor who intimidates us or who doesn’t have time to listen to our concerns, no matter how competent. But we do leave our lives in the hands of doctors who sometimes treat us as if our health were not our business.

If we don’t feel completely comfortable with our doctor, we will refrain from asking critical questions, from sharing deep concerns, ultimately from being our own selves. The resulting mismatch of energy may be as toxic as our ailment. Having an illness is disempowering in itself, and brings out our vulnerability. Many doctors unconsciously use this vulnerability to play out their I-believe-I’m-God attitude, and the tone of the relationship is very difficult to reverse once it is set. We will always feel intimidated if we felt intimidated the first day. In my long road to healing, I have met many doctors. I came to take intimidation and disempowerment—as well as the infantilizing tone of some nurses—for granted, as an intrinsic part of the game, just like a child in the old school system. But I have also met some exceptions; doctors who chose the profession for its humanistic nature, who radiate love and treat their patients as if they were their dear relatives. And I have learned that when the doctor is friendly and respectful, the staff tends to be the same way. When choosing a doctor, look beyond the reputation. Demand human qualities. They play an important role in your healing.

§ No malpractice insurance is a good sign. Some doctors don’t carry malpractice insurance. What does that tell me? That they don’t live in the fear of being prosecuted. And what does that tell me? On one hand, that they are very confident in their performance— which is reassuring to the patient too—and on the other hand, that they probably have strong relationship-building skills. When you earn the esteem of your patients, you have fewer chances to get sued.

GETTING MILEAGE WITH THE DOCTOR

§ Never go alone. Medical school does not teach tact, compassion or empathy. One doctor in particular was so lacking in these qualities that she cost me a few sessions of psychotherapy. When I told her that I wanted to look at alternative options before making a decision about her prescribed course of action, she treated me as if I were insane, telling me that I was going to kill myself and that I had no right to play with my life when I had a young daughter. I was traumatized. It took me months to cleanse myself from the fear and guilt she had managed to instill in me. Doctors are skilled at choosing their words to protect themselves from lawsuits from potentially litigious patients, but they can show little concern for the emotional and physical damage they sometimes generate. After a few negative interactions of this sort, which made me feel sicker when I left the doctor’s office than when I came in, I learned to carry a shield.

My shield is the company of someone who will follow me everywhere it is legally possible. Psychologically, it makes me feel supported and still connected to my world, my identity, and less sensitive to the dehumanization taking place around me. But the most important factor is how that company may influence the doctor-patient relationship. By imposing another presence upon the doctor, someone who is not as vulnerable as you are, and who is not seen as a patient, you are fostering a more equal relationship. And by having a witness in the room the doctor is inclined to put more attention in his/her bedside manners. You are also projecting an image of value: you are showing you are loved, cared for. This empowers you in the eyes of the doctor. On the practical side, coming accompanied can be extremely useful. As a patient, we are not always in our most clear state of mind, especially if we have just been given an unpleasant diagnosis. We tend to forget to ask critical questions and miss parts of the information offered. Your escort will be better able to come up with important questions and take notes. I highly recommend asking that person to write down all the information.

§ Choose your escort carefully. Don’t take with you your elder mother or your introverted friend. Remember, you don’t want to take anyone “patient-like” but someone who the doctor will perceive as an equal. One of my good friends is a celebrity. The times she has come with me, I felt I was walking on a red carpet from the reception to the doctor’s office and back. When I don’t want to bother my friend, I take my six-foot-two and assertive husband dressed in a suit and tie, and when he is not available, I choose the next one in line who will project power and foster respect.

§ Dress purposefully. Along the same lines I wear a suit when I visit the doctor. Even if I end up in a forget-your-dignity-open-back gown, I’ll project power while I am dressed.

§ Come organized. Doctors are busy people, dealing with innumerable issues at the same time within a very cumbersome system. You will gain points if the records you bring —lab tests, pathology reports, films, history, etc. — are complete and organized, and you will save the doctor the need to go through a treasure hunt to track down the missing links.

My “big binder” has become my trademark with all my doctors. From the reaction I get when they first see it, I know that I am giving them a special treat. I organized my binder with two ideas in mind: 1) to make the doctor’s life easier by presenting everything clearly and completely, and 2) to make my life safer by preventing any misreading or overlooking of important data. I use separators with labels and highlight everything relevant: date, doctor’s name, type of test, and keywords.

Organization is an expression of respect that doctors will be inclined to return. It also shows them that you are on top of things and have a cooperative approach. It facilitates the dialogue and will make them more prone to treat you as an intelligent patient.

§ Keep your medical records with you. One of the many absurdities of the medical system is that each doctor wants you to come with your records, but each doctor keeps your records in the office unless you place a formal request to sign them out. It would seem natural to automatically receive a copy of your records, since—after all—it’s your body. But that’s not the way it happens, so you need to take charge. When I was first diagnosed with breast cancer, I had to retrieve all my most recent mammograms, which were spread out in different labs in different counties. In addition to the hassle and stress of traveling from one place to another right after receiving such a negative diagnosis, I had to deal with one lab’s not finding me on record, and another one’s claiming not to have my mammogram. Since then, I always request a copy of my test reports and automatically sign out my x-ray, MRI, CAT scan and ultrasound films. Doctors’ offices, labs and hospitals don’t like you to take the films. They will automatically ask you to what doctor they should be sent. I respond that I’m going for different opinions and need to carry them with me. Then I usually get the, “but you’ll bring them back…” “Sure!” I say, and I never do. Remember, it’s your body; it’s your health; it’s your life. Nobody will take better care of those records than you.

DOING YOUR HOMEWORK CAN SAVE YOUR LIFE

§ Research your condition, tests and medications. Three years after my first diagnosis, a biopsy performed by a new surgeon showed that my cancer had reoccurred. Because I decided not to continue with that surgeon, I signed a waiver of responsibility upon her request, and asked for a copy of all my test reports. Weeks after I received the reports, as I was looking up my type of cancer over the internet, I kept reading about the importance of the so-called HER2 test. I couldn’t find it in the papers received from the surgeon. I called her office and asked if that test had been performed during the biopsy. Fortunately it had and, again on my request, it was sent to me. I kept it safely in my “big binder” and three years later, when hormonal and biological therapy became available, this is the test that determined I was a candidate for it. As soon as my new oncologist saw the test results, he put me on the treatment. No delays, no treasure hunt, no stress. Had I not done the proper research after my biopsy, it would have been a different story.

Doctors are becoming more and more like mere facilitators, and patients are expected to make the decisions, ask the right questions, and do the proper research. If we add to that the economic motives that rule our medical system, we realize that it is in our best interest to look at what is available behind the frontiers of the FDA. Studies show that the more informed patients are about their care, the more likely their health will improve. Today, we are the managers of our health care.

§ Prepare questions in advance. When I visited my present oncologist for the first time, my husband and I had a prepared list of nearly 100 questions. The internet provided me with the “recommended questions to ask an oncologist,” and I added my own. We both read the questions over a few times to familiarize ourselves, as if we were rehearsing a speech. Of course, three quarters of them were automatically answered in the conversation, but when the subject seemed to be wrapped up and my husband had checked all the points covered, the list came in very handy. On the other hand, it really impressed the doctor. He had never seen anyone as prepared and from then on, treated me accordingly, always filling me in with information and ready for my questions. I had set the tone; I had come across as someone who wants to know and is capable of understanding.

As in a job interview or negotiation, preserving your power when entering the doctor’s territory takes a proactive approach. It requires psychology and homework. The system has turned patients into numbers. The trick is to stand out of the pack, to help the doctor and staff see beyond the gown, beyond the health insurance, and even beyond the condition. I don’t present myself as one of the many cancer patients anymore; I present myself as Florence Ferreira, who happens to have cancer. And my visits have started to fulfill their purpose, to provide me with the support I needed without dehumanizing me. You can do it too.

This article is written with gratitude to Dr. Mohammed Jahanzeb, MD for his exceptional human qualities.

Bio:

Florence Ferreira, founder of SpeakGlobal, is a multilingual cross-cultural communication consultant and trainer. When breast cancer introduced her to a new culture, the medical world, with its own communication intricacies, she turned her life lessons into practical tips she shares with audiences and readers worldwide. You can contact her at www.speakglobal.net

Categories: breast+cancer cancer Florence+Ferreira medicine patient+advocacy