The Conveyor Belt of Medicine

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

 

The Surgeon

If you want to read some great writing by a surgeon, try Bongi at Other Things Amanzi or Dr. Bates at Suture for a Living.  Unfortunately, the surgeon to whom I was referred wasn’t like either of those doctors seem to be.  He was nice enough to start with, which was good since I was very nervous and didn’t want to be there.  Once the small-talk was over, he changed.

If I have received questionable medical care, I would hope that another person with enough knowledge to recognize the situation would step in and let me know.  When a person criticizes the medical opinions of everybody else on a case, though, and insists that his knowledge is superior and everyone else is wrong about their areas of expertise, it doesn’t look like he’s helping me avoid bad advice.  It looks like he’s an arrogant jerk.

He criticized my gastroenterologist’s diagnosis.  “Any smart person would know that gallstones cause pancreatitis.  That had to be the cause.  Go for the easy reason.”  So my highly respected gastroenterologist isn’t a smart person?  He was the head of a medical school’s GI department for twenty years! He inspected all my ducts and insisted there was no stretching or scarring or any other evidence of any stones being passed or obstructing things.  I think he knows what he’s talking about when he says he expected to find stones, and went looking for them, but couldn’t find them.

He criticized two radiologists and my other gastroenterologist (yes, I have more than one; they are in the same practice and bounce me back and forth depending on what needs to be done).  According to the CT scans, the occasional pains I feel just beneath my lower ribs on the left ought not to have been ignored (just like gallstone pain, only on the other side).  According to GI and the radiologists, the diagnosis is chronic pancreatitis rather than acute.  This surgeon insisted that only alcoholics get chronic pancreatitis, so those three doctors are wrong:  my dx must be acute no matter what the CTs show.

He criticized my family physician for prescribing a medicine so that I can eat without getting abdominal pains.  In a tone that implied he knows everything, I was informed that he’d never heard of using that medicine for this problem and I shouldn’t be taking it.  It might not be the most common use, but I didn’t have any trouble finding information about it being used for pancreatitis.  Even more important, it allows me to eat.  Sorry if you never heard of it, but that just demonstrates to me that you don’t know everything.

The appointment went on, and this was one time that I really wished I hadn’t provided full information to the doctor.  When he learned that I’d had my first gallbladder attack fifteen years ago, he yelled at me!  I was informed that repeated attacks generate scar tissue and make his job harder.

I thought “watchful waiting” was an acceptable approach to medical problems.  Even if it’s not, what, exactly, am I supposed to do about it now?  Complaining about the difficulty of the job is out of line.  Yelling at the patient is uncalled for.  It doesn’t exactly make me want to put my life in his hands.

I didn’t know if he was just living up to a surgeon’s reputation, or if I should start looking for someone more knowledgeable and professional.  Back I went to my family physician to see if this surgeon is really the best person for the job, or if I could perhaps get a different referral.

Yes to both.

My doctor realized that obviously there was some reason for my question, so he would write a referral to a different surgeon if that’s what I wanted.  He was surprised, however, that this guy yelled at me because from his experience, that’s very out of character.  This surgeon is usually a really nice guy who defies the arrogant surgeon stereotype.  He’s also a very good surgeon.

My doctor suggested that maybe the surgeon was just having an off day.  Since it’s not so long ago that I yelled at the clipboard brigade, I wholeheartedly agree that everyone’s entitled to a bad day once in a while and deserves a second chance.  This is where it helps to have a long-term relationship with a doctor you trust.  Since my doctor says this guy’s the best and not normally a jerk, I decided to try to ignore the fact that he was way out of line during our initial appointment.  After all, I did want the best person possible to perform my operation.

The surgeon was back to his initial “nice guy” persona in the two minutes I saw him prior to the surgery.  We’ll see how follow-up goes.

Figuring Out What To Do – Part 2

What’s that line about the best laid plans of mice and men?  Last July, I was thrilled to not have any more doctor’s appointments scheduled until November.  Medical professionals are nice enough; I just don’t want to need their services.  Instead I have had eight doctor appointments, five days in the hospital, an ultrasound, x-rays, two CTs, an MRCP, and, everyone was urging me to have surgery.

I had to figure out what to do.  The main problem, in my view, was that I had gone to the hospital for one problem, but everyone wanted to treat a different, unrelated problem.

Gallstones I was familiar with.  I made my no-surgery decision fifteen years ago and was not being given any reason to change that decision.  Back then, I had three gallbladder attacks before the doctors figured out the problem; they recommended that I go under the knife.  Instead, I started looking for more information.  What caused the problem?  Could it be prevented?  Were there less drastic treatment options?

I learned that certain foods can be triggers.  Avoid foods that cause a problem, and suddenly there is no problem.  At least one doctor agrees:

most people can pretty well poke along with an asymptomatic gallbladder.
Sporadic gallbladder attacks that respond to diet changes, and the presence of
gallstones identified by sonogram, are not in themselves an indication for
surgery. The pain can be brought under control with dietary modification, and
the presence of the stones by itself doesn’t mean you need to have them taken
out.

For many years that worked for me.  I identified a trigger:  chocolate.  Eating chocolate made me wish – no exaggeration – that I were dead.  The pain was dreadful.  It only took a few months for me to learn that if I avoided it, I’d  have no trouble with my gallbladder.

Then I discovered another, less dramatic, trigger:  Gatorade.  Now, I know that’s not on the usual list of foods that cause gallbladder attacks, but my gallbladder doesn’t read medical textbooks.  When the weather is hot, I like Gatorade, and I’ve figured out that I can tolerate the occasional bottle if I also make sure to do the home-remedy for gallstones.

All that was in the past.  Now, the gallstones that everyone was so concerned with were my fault for not being diligent.  In early September we’d had a stretch of hot weather during which I drank a lot of Gatorade.  Since I’d been very careful what I ate, I hadn’t had a gallbladder attack in years, thus foolishly didn’t bother to make sure that the Gatorade wasn’t causing problems with gallstones.  Oops.  Stupid, but I know how to deal with them.  My decision had been carefully thought out, and would not change unless new facts came into play.

The reason I was in the hospital, and the thing that needed to be treated/managed (in my opinion) was the new diagnosis of pancreatitis.  Since I got very little information from any of the hospital staff, I was glad to have my laptop and internet access to learn about this new diagnosis.

I learned that gallstones are one of the leading causes of acute pancreatitis.  Perhaps the no-surgery decision I made fifteen years ago needed to be revised.

That was not the case.  The GI people have pretty good credentials, and after extensive testing they were adamant that this was a very strange case in which the gallstones were not causing the pancreatitis.

Being pushed to have gallbladder surgery when that wasn’t the cause of my hospitalization was extremely frustrating.  My reasoning was that if the two problems were separate, they should be treated separately.  I could take care of the gallstones; they just needed to figure out what to do about the pancreatitis so we could prevent a recurrence.

Finally my gastroenterologist agreed to let me try home treatment for the gallstones.  After that, additional imaging tests could be done to obtain proof as to whether or not the stones were gone.  If they were gone, problem solved.  If they weren’t gone, then I’d have the surgery.  My rheumatologist concurred.

My family physician wasn’t as enthusiastic about the plan, but didn’t say why.  Part of me speculated… was that because he knew it would really work?  Was it because he figured it would be harder to talk me into the surgery once I felt better and went home?  Was it because he had an idea what would really happen and wanted to prevent it?  Who knows.  Despite his misgivings, he discharged me from the hospital.

One little footnote you don’t often see in those home-remedy write-ups is that you ought to find out about the size of the stones before trying to pass them.  I attempted to pass the gallstones as I’d done in the past.  This time, however, I knew something was wrong.

I had a bad feeling that the scan would show I hadn’t gotten rid of all the stones, so repeated the home-treatment before going in for my follow-up imaging.  I was right.  The scan still showed gallstones.  It also showed many in the ducts and a huge one stuck right where it would cause problems for the pancreas.

Surgery still didn’t seem like the best option.  Like clearing an accident that’s blocking the freeway, I figured that if the stuck stone could be dislodged, then the remaining stones could be passed.  Problem solved.  That, however, would require the remaining stones to be small enough, and there was no guarantee that another one wouldn’t get stuck.  Stuck stones are a problem.

All along, I’ve said that I wanted facts.  The situation needed to be different if I were to change my mind about surgery.  An additional fact in the radiologist’s report changed the situation.  It was time to see a surgeon.