Today I found myself extremely pissed at my health care team. I had my weekly infusion of eculizumab, the drug that is intended to prevent the HUS from recurring. For the past four sessions, the renal transplant coordinator has told me what time to be at the infusion center for the infusions. Yesterday when I called to find out what time I was supposed to be there, I was told that making the appointments was my responsibility and since I hadn’t made an appointment, they were not available until 1 pm, which meant I had to sit in the hospital from 7:30 am when I needed to go in to get my blood drawn, until 2 pm when my infusion was finished. Not that I have much of a life right now, but I can think of a million things I would rather be doing that sitting in an uncomfortable chair in the waiting room of a hospital clinic for six hours.
I called the infusion center and begged them to squeeze me in early. Now please understand I have worked in this University system for the past 20 years. I understand how it works, and I know in my clinic we squeeze people in all the time. They refused to do it. I told them I would sit in the waiting room and wait in case they had a no-show. Which I did. I sat there all morning hoping they would call me back. They saw me, they came out and called other people and refused to call me. They could have done so. It would have been the compassionate thing to do, but would have meant they would have had to work harder, and they were not about to do that.
They called me back at 1 pm on the dot, not a minute earlier. It also meant I got stuck four times today. Once for the labs, they missed the first i.v. (in my hand – owwww!) so they had to stick me again, and then gave me an injection of a medicine to stimulate my bone marrow since my red count is still low. I was grumpy grumpy grumpy.
The health care system cannot help but undermine individual autonomy. We become cogs in the machine. One of the catch phrases in medical ethics today is shared decision-making – i.e. the patient has the power to direct his/her care after meaningful and robust discussions of the available options with the treating physician. But the reality is that it almost never happens that way. The information inequity between the patient and the provider is just too great. Even if there are some very good physicians who try their best to treat patients as individuals, and there are, the system as a whole is designed to treat us like widgets. In some respects that is good. In the old days they called it “cook book medicine” but these days we call it evidence-based medicine and, for the most part, people should be treated based on what the best evidence in the literature shows works, not the history and individual experience of the physician. But it still doesn’t feel very good and unfortunately life as a patient, especially in the hospital, means you suffer millions of little humiliations each day.
So, from here on out, I am resolved to take charge of at least my schedule. Not rely on the coordinators, make my own appointments, keep even more on top of my plan, and as much as possible try to maintain some modicum of control and dignity. It is the responsibility of every one of us to do the same. We are fighting decades of a culture of paternalism and the doctor knows best and while it is uncomfortable often for physicians to have patients who are demanding and empowered (remember Elaine in Seinfeld?) it is important.
Creatinine was 1.29 today. I am free until Monday!