Endurance

Perturbed, frustrated, aggravated, irritated, upset, disturbed, annoyed, bothered, discouraged, disheartened, dispirited, downcast, dejected…  I need a bigger thesaurus.

When I left rheumy #1 for rheumy #2, I was clear about what I wanted:

  • a doctor with whom I had good rapport
  • a doctor in private practice, not owned by a hospital
  • a doctor who saw patients without shuffling them aside to a PA

For a few years things were going well.  Unfortunately, about a year ago my doctor’s practice sold out.

Once they were owned by a hospital, things changed.  First thing to go was the excellent front office staff.  They were moved elsewhere within the system and replaced by lemon-suckers who just seem to be going through the motions.  Next my doctor’s MA (who always managed to process prescription refills within one day) disappeared; it now takes five days to approve refills and there’s a different MA every time I’m there.

To add insult to injury, the hospital brought in PAs.  Instead of seeing my private MD, I now see a hospital-employed PA.  The PA might be a nice person, might be competent after learning to do joint exams without causing pain, might be a lot of things. What the PA is not is the doctor with whom I established a relationship.  I feel betrayed.

Now the office is calling to move my appointment.  It seems that the hospital system has decided to open another clinic at another one of their hospitals.  My choice is to drive an extra 30 minutes or move my appointment to a different day.

I want out, but there doesn’t seem to be any point in finding a new doctor right now, since whoever I find could eventually sell out, leaving me right back in the same position.  Instead, I will show up for appointments as rarely as possible so that my prescription refills will be approved.  My youngest child is twelve; in six years he’ll head to college, and four years after that he should graduate.  That means I just have to deal with this ten more years before we can retire and move away.  If I can get away with follow-up visits every six months, that means I only have to go in twenty more times.  By then, I expect the medical profession to have undergone significant changes, and finding a new rheumy will likely be a completely different situation than it is now.

Twenty might sound like a lot, but I remember how many appointments I had the first few years after I was diagnosed. Twenty is nothing.  Although I was unhappy about things when I started this post, I actually feel better now.  I can endure twenty visits.

More Problems With EHRs

My fourteen year old son had a sports physical yesterday.  At the end of the visit we were handed a sheaf of papers summarizing everything that had occurred.  We headed toward the lab for a blood draw, then drove home.  Finally, two hours after the appointment was over, I sat down to review the paperwork I’d received.  There it was:

EHR Problem

There are a few problems with this.  First, obviously, is that the information is wrong.  My son did not have his first menstrual period at age 13.

Second, poor programming permitted this error to occur.  When the patient is a male, it should not be possible to enter data in a “females only” section of the chart.  Either the entire section should be greyed-out, or selecting “male” in the gender field should generate an “N/A” entry in all female-only fields.  Worse, even for female patients, it should not be possible to enter any data in the second and third fields when the first question received a “no.”  This is incredibly sloppy programming.  If this is an example of the quality of work that’s gone into writing EHR software, it’s no wonder that it took an act of Congress to coerce physicians into purchasing this garbage.

After laughing at the typo, I checked the rest of the paperwork to make sure there weren’t any other surprises, then phoned our doctor’s office to request that they make the appropriate correction.  The receptionist was very nice, laughed with me, and promised to have the error fixed.

Problem:  at 5:30 our doctor phoned. The error can’t be fixed.  Once information is in an electronic chart, it can’t be changed.  What kind of numskull programmer doesn’t recognize the need for fallible humans to make corrections to typos?

Image getting a statement from your financial institution and finding that a decimal was in the wrong place —  that the check you wrote for $50 went through as $500.  Nobody would accept the bank saying, “Sorry, but once something is in the computer, it can’t be changed.”  Or what if your deposit was credited to another person’s account?  This happened to us once – fortunately my spouse keeps all deposit slips and checks them against the bank statement; it was relatively easy to resolve the problem because banks can make corrections to bad data.

It is possible to leave a trail showing that a correction was made: when, why, by whom, etc. The programming should then make it impossible for the old “bad” data to be copied and carried forward into future notes and communications.

In fact, the same programming would directly address misdiagnoses. Once a diagnosis is determined to be inaccurate and the true problem is discovered, it would not be difficult for a small addendum to appear throughout the chart whenever that misdiagnosis occurs, noting that on such-and-such a date, it was determined that the dx in question was more accurately replaced with a diagnosis of ___. The programming needs to ensure that the correct information, not the erroneous data, is what carries forward.

Electronic Health Records – a great idea in theory, but an abysmal failure in practice – have been inflicted on this country by the lawyers in DC who wrote the “Affordable” Care Act thinking that it’s appropriate for politicians to tell doctors how to do their jobs.  There are too many problems, from poor design, to bad programming, to the tendency to perpetuate inaccurate data.

All computer software need to be well-designed.  It needs to be tested and idiot-proofed.  Electronic health records are no different.  EHR software needs to acknowledge that fallible humans have a need to correct errors.  It’s true at the bank, and it’s even more true when people’s lives are at stake.

What do you do when the doctor is wrong?

I hadn’t used an urgent care clinic in fifteen years, but Friday evening I encountered what I determined to be a non-emergency situation that maybe shouldn’t wait until Monday for treatment.

As the night wore on, I was using the bathroom more and more frequently.  It got to the point that there would only be a few drops, yet before I could get back in bed I felt the need to go again.  It was annoying, but not an emergency.  After a few hours, my lower back started to hurt.  Also annoying, but still not an emergency.  Deciding that I must need more fluids, I drank a glass of water.  After that, every time I used the bathroom, I would also vomit.  Ewww.  I drank more water because I didn’t want to get dehydrated and (not to be overly graphic), upchucking water was preferrable to dry heaves.

Three hours later, I typed “low urine output and back pain” into a search engine and learned that possible causes included cystitis, sepsis, prostate cancer, end-stage kidney disease, and kidney stones.  My symptoms didn’t match cystitis or sepsis, prostate cancer was easily ruled out, and given my recent lab results, so was end-stage kidney disease.  That left kidney stones or something Dr. Google didn’t reveal.  Since kidney stones are a possible side effect of one of my meds, I figured that was most likely what was going on.  Reassured that it wasn’t an emergency, I let my husband continue sleeping.

And, although it wasn’t an emergency, I knew I’d be significantly dehydrated if I spent the next thirty hours vomiting.  Googling “urgent care clinics,” I learned that the nearest one was quite a distance away (and in the opposite direction as my family doctor).  I love living out in the country, but sometimes there are disadvantages – like taking an hour to get medical help.

Once morning arrived, my dear husband drove me and my bucket (so I didn’t make a mess of his car) into the city.  The PA asked questions, did an exam, and told me that I needed to go to the ER.  It sounded to her like kidney stones, so the hospital would need to do some imaging and lab work.  She was also concerned that I was getting dehydrated.  How ironic that the PA had the exact same thoughts I’d had, but I’d chosen the wrong place to get help.

At the hospital, things got weird.  The doctor focussed on my vomiting, which I had been convinced was only a reaction to the pain in my back.  He ordered x-rays, not a CT, and also blood work and another urine dip.  The nurse went to bat for me and called the urgent care clinic for results instead of repeating the dip, however the doctor later insisted on repeating that test.  Eventually he decided that mtx made me more susceptible to infection, so told me I had “stomach flu” and sent me home with a prescription for an anti-nausea medicine.

Saturday afternoon I wore a path between the bathroom and the sofa.  No matter what the ER doc said, feeling the need to urinate three times every five minutes is not the stomach flu. When bedtime arrived, I took feldene, acetaminophen, and more zofran, and slept like a log for three hours.  At 2 a.m. I awoke in agony.  The back pain had moved to my side, and it felt like someone was stabbing me.

Eventually I was able to crawl to the bathroom where I huddled, moaning.  There was no way I could wait until Monday to see my family physician.  The pain was excruciating.  My husband got me another zofran tablet, and also dug through the medicine cabinet to find morphine left from my surgery two years ago.  The zofran didn’t work, but the morphine lowered the pain from a 9 to an 8, and we headed back to the ER.

This time there was a different doctor who explained that although people with kidney stones are usually agitated and move around a lot (I just wanted to curl up in a ball and die), he thought that’s what I had.  He waited patiently while I puked my guts out, then did an exam and sent me for a CT scan. Testing proved he was right.  The PA was right.  I was right.  What on earth was that first ER doc thinking?  I have a kidney stone, not the stomach flu.

Now I have different prescriptions and am waiting for this stone to pass.  And I’m wondering:  What could I have done differently?  What should I have said when doc #1 patronizingly tried to convince me that I had a simple case of gastroenteritis?  That wrong diagnosis cost me unneeded x-rays, a second trip to the ER, lost sleep, worry for my family, and a ton of extra time.  I suspect that in the future I’ll be asking doctors lots more questions.  Even though I haven’t been to medical school, I won’t be as accepting of a diagnosis that doesn’t sound quite right.  What’s the solution?  How can a person get good care without seeming obnoxious?

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Life-threatening situations are what I consider emergencies:  heart attack, stroke, blow to the head followed by loss of consciousness, etc.  There are other instances in which medical care is needed, but nobody’s going to die if it takes a few hours instead of a few minutes to obtain help.  Hospital emergency departments are for emergencies.  Doctor’s offices are for other situations.  In my opinion, urgent care centers are for times that the doctor’s office is closed and the non-emergency situation can’t wait until the doctor’s office will be open.