I met an oncologist who said: “I see my relationship with my patient as a marriage.” That’s the kind of doctor you want. I’ve heard his patients say: “He doesn’t take my power away. I feel safe in his office.” That’s what you want to feel, two people forming a bond that has a life of its own.
I use the key word “relationship” to suggest that you and the physician are together in a difficult time, and that you are going to approach the difficulties together. There is a commitment on both sides. Each person is interested not just in him or herself, but in life enhancing, life fostering behaviour that allows you to be a unique individual who fights for your life. It is not just an issue of your disease, but of what you experience as a whole person, and whether you are supported and attended to by the physician. Remember that the doctor’s title is “attending physician”.The doctor doesn’t necessarily have to agree with everything you are doing. Difficulties are something you can discuss and work out. You are like “war buddies” fighting a common enemy. I like the term “war buddies” because it suggests that although there can be conflict between you, you are fighting together as a team. When you go to see a doctor you are usually feeling vulnerable, and the doctor can seem to have great power. Don’t be intimidated. I know some patients who have sat down and been totally sincere with the doctor, and this sincerity has led to tears and hugs on the part of both of them. If you initiate such sincerity and closeness and there is no response and you don’t sense there is a human being on the other side of the desk, get up and get out.
Some people may feel: “But I can’t get out. I am in a health plan” (or on a particular doctor’s list). Then let me tell you what one woman did. She showed up at her health facility with her lawyer beside her, sat down in front of the doctor, and said: “You and I do not have a good relationship. It is destructive for me when I am trying to battle cancer. I’m going to get another doctor, and the health plan will continue to pay. My lawyer is here to work that out.” She got up and left.
How do you find a doctor? You’ll have to do some scouting. Ask questions. People have sat in doctors’ waiting rooms and sensed what these felt like and what the staff were like. You can interview a doctor, make an appointment to talk to him or her. Sometimes the doctor may just be too busy; if he or she doesn’t initially have time to sit and listen, you can express yourself through a letter.
One woman said she just asked her doctor: “Do you believe in me?” Ask that kind of question. Ask if the doctor will respect you and your ideas.
What does it mean to be an exceptional patient? They have certain characteristics, one of which is that they are willing to make choices. They reach out and take chances. They are ready to experience new things, whether it means floating in a hot tub, eating vegetables, getting a massage, or trying a whole host of therapies. They choose what is right for them at that moment. If it doesn’t work, they let go of it. If it does provide them with something, they continue. They don’t run to other people and say: “Decide what to do with my life.” They learn from others but don’t let others decide for them.
Exceptional patients take responsibility. It means participating and understanding: “I have a role here. I’m not the submissive sufferer that the word patient implies willing to undergo everything without speaking up, or raising a little hell, maybe even getting words like ‘interfering’, ‘uncooperative’ or ‘difficult’ in my medical record.”
One woman wrote and said that she had trained her medical resident to obediently knock at the door and not disturb her if she was on what she called her “love line,” meaning a long distance call to her family. She taught her oncologist to sit down and look her in the eye instead of walking out while saying: “Any questions?” She questioned nurses about any treatment she didn’t understand. Anyone who wanted to examine her had to “pay” by hugging or rubbing her “lucky” bald head.
A friend got the word “character” in his medical record. He had his fax machine and his computer brought to his hospital transplant room, and the hospital staff began to refer to him not by his name but by the term “character”. But he healed twice as quickly as anyone expected.
Arthur W Frank in his book At the Will of the Body: Reflections on Illness tells how, while he was out of his hospital room, a sign saying “Lymphoma” was put on the door. If I saw that whether the label was “myocardial infarction” or “melanoma” or “colon cancer,” I would tear it off and write, “Human being in here,” and beneath that, “If you’re looking for a lymphoma, go to the pathology department.”
It is you we are treating, not just a disease. The right treatment is what is right for you at the moment. That might in some cases even mean stopping therapy or having no treatment at all. At times it may be to have aggressive therapy. You may want to eat only vegetables, or pray, or even say that it is time to go. It is your life, and you have a right to say no. You have a right to 16 doctors’ opinions. You don’t have to do what they say.