Sometimes it feels as if, as a patient, I have very little say in my medical care. In the rest of my life, I carefully research options before making an informed choice. Not with doctors. The world of medicine is like being thrown on a conveyor belt where you roll blindly along from one station to the next. The workers on the assembly line know what they’re doing, and have a general sense of where the conveyor belt is going, but the patient traveling on the conveyor belt doesn’t get to know.
Enter the hospital, and there are protocols in place guiding everything that’s done. The patient doesn’t get to interview nurses, CNA’s, and hospitalists to create a team of people to provide their care. No. The patient is trapped in a room, at the mercy of the hospital administrator whose policies control the conveyor belt and dictate who the assembly line workers are and which procedures are done.
Get a referral to a surgeon, and it’s like being tossed onto a different conveyor belt: pre-op “meet the surgeon” appointment, then do the admission paperwork and show up for the various assembly line workers to contribute their little piece of work to the end product, followed by recovery and post-op appointment. One identical patient after the next rolls off the assembly line, with no allowance made for the uniqueness of individuals.
If you’re referred to a different specialist, it’s like being moved to a different conveyor belt. All doctors have their own procedures, their own secret way of doing things to which the patient is not privy. The patient can check for board certification, but aside from that has no way of evaluating the specialist’s credentials or suitability for this specific situation. Patients are just supposed to sit on the conveyor belt of medical care and do what they’re told.
In all of this, it would be helpful if medical personnel thought a bit more about the patient’s needs. A little theory from the world of eduction is pertinent. People have different ways of processing information. Some people are very focussed on the immediate, and take a “just tell me what I need to know right this minute” approach to life. Others need to know more and want to see the big picture.
I am one of those big picture people. If I have to be tossed onto a conveyor belt, a map of the thing would be appreciated. In fact, I don’t just want a map; I want to know how the whole thing works, and want to be sure that the entire conveyor belt is operating as smoothly as possible. I don’t like being stuck, waiting for repairs when the conveyor belt breaks down.
In fact, I want to compare a couple different conveyor belts and choose the one that seems to work the most efficiently while providing the best end product. I want to pick the workers on the assembly line. By no means do I want to tell the assembly line workers how to do their jobs – I just want the ones who are doing their jobs.
Ideally, instead of being stuck with whatever conveyor belt I happen to be tossed on, and whatever assembly line workers happen to be scheduled, I want off the conveyor belt. I want individualized care, and I want a say in how it’s delivered.
Edit to add clarification:
I’m not saying that I always want to be in charge of making the decisions about appropriate treatment. That’s the doctor’s job. I want things explained to me so that I understand what’s going on and why the recommended treatment is most appropriate. I don’t want to be stuck forever with whoever happened to be on call. I want the option of hiring the doctor who is the best fit for my symptoms/diagnosis/personality.
More specifically, I’m not in charge of saying how to get rid of the stones that remain in what’s left of my biliary system. I wanted to try a non-surgical option. It made things worse. From what I’m told, the only thing to do is break the stones into small pieces, then remove them. If that’s what’s needed then I’m okay with that. I am NOT okay with being told that there’s only one person in the state who can do it, and that I have no choice in the matter. I am NOT okay with being ignored when I ask GI if there’s anyone else who can do it sooner. I am NOT okay with the people at Virginia Mason taking their own sweet time; it’s been three weeks since they got my referral and they still won’t make an appointment for me. I did hear that they will call and tell me when to come in – as if it’s a court appearance to which I’m being summoned instead of an appointment time that we mutually agree upon. Given how I feel, it would not be at all surprising if I have another bout of pancreatitis before they get around to me. I’m still working on seeing someone else to get this done sooner.
This post was published in November as part of NHBPM’s – 30 health posts in 30 days