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.
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This post was published in November as part of NHBPM’s – 30 health posts in 30 days
∞ itis 
The worst part is that when all these different specialists see you in the hospital, they don’t share information. One never knows what another has already done/prescribed/recommended etc. Patients really have to be aware of all that’s going on and advocate for themselves. Knowledge is power. When Husband was in the ER several times a couple of weeks ago, I pulled out my laptop and researched info right there in front of the docs and asked questions. Most were willing to talk but some looked very irritated at the process. We promptly “fired” the ones who were not willing to discuss issues re: care, medication, surgeries, etc. Right there in the ER we told them not to come back and then contacted our family doc to refer someone else.
Why don’t they share information? My doctors did. Not always with me, but they took the time to read what the others had written in my chart so they were all on the same page with my treatment.
My laptop was a lifesaver when I was in the hospital. I can see how that would be a great help to you being able to advocate for your husband in the ER. When I was in the ER, I wasn’t in any shape to do anything and my husband was too worried.
What you are seeking is called patient centered medicine whereby the patient is consulted about their own medical care and actually has an input into the outcome. Mmmmmm…an innovative process…not, but we are far from this ideal. Just so unfortunate that what you describe is exactly what exists today. My only two cents that I can throw out there is that you can screen your surgeon more thoroughly then just certification. For my thyroid surgery I interviewed several surgeons and one of the first questions on my list was, “How many thyroid surgeries have you performed?” I wanted a surgeon experienced in thyroid surgery and aware of the risk factors. I was fortunate in that my surgery went just fine. And maybe another thought would be to pre-select a hospital before one needs it. It is true that often a particular doc may not practice at your first choice hospital in the area but just a thought. When I lived in an area with multiple hospitals, I had a list of which hospital my family or an ambulance was to transport me based on the presumed problem. Heart, I wanted to go to x hospital. Stroke I wanted to go to y hospital and so on. Here there is only 1 hospital so no choice but you do need a hospital buddy with todays medical care to be a second set of eyes to ensure you are get top care.
Lucky you to interview surgeons until you found one you like. Around here, specialists won’t see patients without a referral, so I can’t just go interview all the surgeons I wish. I have to get a separate referral from my family physician for every one I see. I had my gallbladder removed, which is a very common surgery and one that everyone with any experience at all has done a ton of. Part of the problem was not knowing to ask if he’d ever had a patient with a stone in the pancreatic duct. Guess that’s not quite as common, and in 15 years he’d never seen that particular complication. I didn’t know to ask – which leads to another part of the problem: GI’s handling of everything. They should have talked to the surgeon to say what was needed. GI should have asked the place they referred me to get a move on. They should now be advocating for me instead of sitting on their laurels. The surgeon learned something new, and if it ever comes up again, he will insist on a lithotripsy and ERCP so that when the patient goes home, the whole problem has been addressed and doesn’t drag on for months, regardless of what GI is doing.
I agree with you about choosing in advance which hospital you want to be taken to, depending on the problem. I’m told that EMTs are the best people to ask for that information, since they are familiar with all the hospitals.
Does your website have a contact page? I’m having a tough time locating it but, I’d like to send you an e-mail. I’ve got some suggestions for your blog you might be interested in hearing. Either way, great blog and I look forward to seeing it develop over time.
Scroll to the bottom of my About Me page, and you’ll find my e-mail address.