I’ve been in school for the last 15 years and didn’t even know it. The last four years, I consider my graduate degree program. I’m considering a doctorate.
My education began with the birth of my first child. From that one experience, I learned about University Hospital politics via the cancellation of the midwife program 2 weeks before my due date. I was given an option to switch to another hospital of course, but I only had 2 weeks. I opted to stay. That naïve decision yielded an on-call doctor that I had never met (who was horrible), a nurse in the delivery room that acted like it was her first day on the job, and when returning to the hospital later that week for a bilirubin check for my newborn, I was privy to a conversation between my doctor and another medical professional that solidified my decision to switch providers.
I was standing behind the good doctor waiting on the elevator. He obviously didn’t notice me, not that he would have recognized me. He was bubbling with excitement and whispering to the person with him that he had just signed the order to purchase a new 3D imaging ultrasound machine. Sounds cool, right? Well, it was upsetting to me. The reason why the University cancelled the midwife program? The department lacked the funding. There just wasn’t enough money to keep it going. Well, at least not enough to pay the midwives and buy an expensive 3D imaging machine for the doctors.
Lesson 1: Never assume that doctors, nurses, or the hospital have the patient’s (your) best interest at heart.
A few years passed and we had moved to another state. My daughter was now 3 years old. We went for her first checkup at the new pediatrician. I was dismayed to discover that the hospital and old pediatrician had not sent all of the records yet. It had been almost 3 months. The pediatrician said that my daughter was missing a Hepatitis B vaccine on her record. I was flustered. I was working 2 jobs at the time and we were still getting settled in. Most of our things were still in boxes. I told him that we should wait so that I could find my copy that I hand carry to appointments. Something didn’t seem quite right. He insisted on going ahead and giving her the shot. I allowed it. To this day, I have never forgiven myself for letting him bully me like that… because when I got home and pulled out my copy, she was right on schedule and not due for any more shots for almost a year. In fact, she did not need a Hep B booster, ever again. He had double-dosed her. I was inconsolable for days. I worried that something would be wrong with her because of it. I promised myself that I would never let a doctor bully me again. That I would trust my gut, and double check everything that they told me.
Lesson 2: Never let a doctor bully, frighten, or trick you into doing something that your gut is saying isn’t quite right. Make them give you the time, the documentation, and the resources that you need to come to a sound decision about your own (and your child’s) health. If they push, push back just as hard and hold your ground.
These are the 2 main lessons that created the monster patient (and patient’s parent) that doctors are faced with now. The lessons are also the basis of the top ten ways that doctors have lost my respect, attention, and patronage:
- Not keeping up with the literature in their own discipline. I had a cardiology doctor try to prescribe Krill Oil for my younger daughter to raise her HDL levels. This was early in our process in dealing with the high cholesterol. I had only done cursory research on the subject of Familial Hypercholesterolemia (genetic high cholesterol). However, I had read a fairly recent article in a peer-reviewed medical journal (I believe it was The Lancet), that stated that those with FH should not take fish oil. It was shown to raise triglycerides, which at the time were a higher risk factor for arterial damage than low HDL. I smiled at her and said we would think about it. I went back home and confirmed that, yes, that was indeed the current medical opinion.
- Not listening and/or not taking proper notes. Nothing irks me like having to repeat myself. Especially to a doctor, nurse, or other medical professional. One cardiologist put in the medical records, repeatedly, that I had said that we were “almost vegan”. Those words never left my mouth. I was very specific and said “semi-vegetarian”.
- Not sharing information with other professionals who deal with patient care of the same individual. Again, I hate repeating myself. When my husband was recovering in the hospital from triple bypass surgery, I ended up YELLING at a poor dietician because he was the sixth or seventh person, in a row, to come into the hospital room and start giving us the diet change lecture. I said, “HE’S BEEN VEGAN FOR OVER A YEAR.” Along with a few other choice words that I’m not too proud of… but in my defense, I did apologize immediately.
- Not writing down side effects noted. The records for both my daughters do not reflect the side effects that they experienced when taking plant stanol and sterol supplements.
- Not reporting side effects to the FDA. Doctors are ethically bound to report side effects to the FDA when reported by patients. The FDA website has a handy form that you can fill out online as a consumer, it must be extra easy for doctors. Most company websites have online forms as well. How do I know this? I’ve done it. I reported side effects that my second child experienced from infant formula that was DHA fortified to the FDA and the company that made the formula. I even provided them with the World Health Organization’s (WHO) requirements for maximum daily allowance. (Said formula was THE maximum, and almost twice what British and European formulas were allowed.)
- Not answering my questions, ignoring them, or dumbing down the answer. If I ask a doctor a question like, “How and where is HDL made in the body?” I expect one of three things: A full explanation with medical jargon and all; a partial explanation and where I can find the rest of the answer; or a simple “I don’t know, but I will see if I can find that out…” I will even accept, “well, researchers haven’t been able to pinpoint that exactly…”
- Using a condescending tone of voice. Need I say more?
- Refusing care if I don’t do *enter specific requirement here*. Yes, I had a doctor threaten to refuse care if my daughter didn’t get a vaccination that the doctor insisted was necessary. (Sound familiar?) I wasn’t refusing the vaccine by the way. I only said that I wanted to make sure that she hadn’t already had it, read about possible side effects, and make sure that the school required it. My daughter got to watch the ensuing argument like a tennis match. Back and forth. I never got angry. I smiled. That’s a dangerous point for me in the anger spectrum though. The doctor, on the other hand, was livid when we left the room. We never went back.
- Not admitting that care requirements change with new information. When my daughters were first diagnosed, the focus of care was looking at the triglycerides divided by the HDL level. This gave a point system. Anything over a 3 was considered high risk. LDL was looked at, but the risk levels were a somewhat higher range than they are now. Now, when I mention it, it’s like it never happened.
- Not admitting when they have maxed out their skill set for helping you. We are quite literally, driving 4 hours round trip, two times per year, to have the doctor say, “Yes, diet is still working…”