I just got health care chills, and as a veteran consumer of health care, I don't GET health care chills. Nothing was shocking, until today.
I am in Phoenix, AZ to go to my father's first appointment with his oncologist. He was recently diagnosed with multiple myeloma (MM), a cancer of the plasma cells. Plasma cells are blood cells that make antibodies called immunoglobulin. I am a firm believer that you need lots of people paying attention to health care matters. I take advocates with me to important appointments and think everyone else should too. If you disagree, maybe this will change your mind. Too many cooks can spoil the broth, but not enough cooks can also be devastating. The doc we saw today will not be my dad's main doctor, but he was who was available for us to have a consultation before my dad is scheduled to begin chemotherapy next week. Let me say from the outset that this is no slacker practice; it's definitely a top oncology practice in the area.
For this instance, I had read up on MM to brush up for this consultation, and had read from two excellent sources that if a patient uses certain chemotherapy drugs, it rules out the option of the patient getting a bone marrow or stem cell transplant later. One of my questions for the doc today was, "Is my dad a candidate for a marrow or stem cell transplant?" I got a very non-committal, "We'll figure that out later as we see how things go" kind of response. I told the doctor, "I read in the book your office gave us and on the Mayo Clinic Web site that use of certain drugs rules out this option. Are you planning to use one of those drugs?" The doctor looked at the chemo order and said, "You're right. We are planning to use that drug and it would rule out the transplant option. Clearly we need to figure this out before we begin treatment." The doctor said he would consult with my dad's oncologist and their practice head and get back to him. He added, "If that delays therapy a week or two, it's worth it." We said goodbye and my dad and his wife said that they were really grateful that I was there and had brought that up.
I went to the bathroom, shaking. It is the most dramatic example I have of the need for patients to be their own advocates. Gone are the days where you can assume that doctors have your back and all you need to do is listen and trust. Sorry, hon, you need to take a crash course and become a bit of a doctor yourself, or you can be totally screwed. It is harrowing to think that if I hadn't read the info I had and challenged the doctor on it, my father could have had one dose of a drug next week that would completely rule out his options for treatment forever. Doctors are too stretched to give every patient the best care they can; I happen to think it's an effect of our insurance-driven health care system: docs have to see 35-50 patients a day just to earn enough to pay their bills and draw a decent salary. No doctor can keep great tabs on that many people a day; it would be super-human.
Another dramatic example of the need to be your own advocate from my own health care saga, is that I had to ask my doctor for IV antibiotics for my Lyme Disease. I had read that people with my degree of infection rarely, if ever, get well from just oral antibiotics alone. My doctor was about to discharge me from his care with just four weeks of oral doxycycline therapy, when I said, "I've heard from many sources that people with neurological damage from Lyme need the IV antibiotics, too. Is that right?" He said, "Oh, you want to try that? Sure." I saw a dramatic improvement after the IV treatments; until I had them I could not wash my own hair because I couldn't lift my hands to my head. I had and still have a long road to go in my healing, but there's no way I'd be where I am without those four weeks of IV Rocephin.
I am superbly grateful that I have the wherewithal to be this kind of advocate for myself and my loved ones, and that I have people in my life, like my husband, who do the same for me. I shudder to think about the people who don't have the resources, intelligence, or communications skills to do the same. It's scary to think that your entire quality of life -- or your life itself -- can hinge on the extent to which you do so effectively.