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.

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Unbelievable

When I see my doctor, he doesn’t assume that I’ve reported every symptom; he takes what I’ve reported, looks for patterns, and asks questions to try to fill in the missing pieces so he can get an accurate picture of what’s going on.  I thought all doctors were trained to do that.

Some are obviously better at it than others.  Throughout her high school years, my niece saw pediatric cardiologists and pediatric neurologists.  Now she is in her second year of college and seeing an internist.  Last week I heard that she is trying to juggle classes and doctor appointments, and they suspected Crohns.  Crohns is linked to the spondyloarthropathies.  My niece has Raynauds and symptoms of Crohns.

I emailed my niece a few links so she could read about Crohns and some of the related arthritic diseases.  She called me after reading them.  Joint pain?  Nobody ever asked her about joint pain.  She’s had joint pain since she was twelve years old!  Knees, hips, and ankles are affected, sometimes shoulders; she has long-term, bilateral joint pain.  She doesn’t think to say anything about it; nor does she make an issue of the fact that she breathes regularly.  When something is always there, you don’t think to mention it.  She just buys ibuprofen in Costco-sized bottles and tries to make the best of things.

Autoimmune diseases such as RA and JIA have a genetic component.  It amazes me when this link is ignored.  I have Raynauds and RA/USpA.  My daughter has Raynauds and ERA.  We believe that my father had undiagnosed autoimmune arthritis.  My niece has Raynauds and a variety of other health problems that could all be explained as complications of JIA.  Even without our family history, it seems like the combination of Raynauds with other symptoms linked to autoimmune diseases would make a doctor include JIA in his list of possibilities to be investigated.

After a long talk with my niece, I’m fairly sure that she would benefit from a thorough exam by a rheumatologist.  Now she needs to figure out how to track symptoms (after figuring out which symptoms to track), record what she does that makes things better or worse, any other pertinent data (without knowing what might or might not be pertinent), and respectfully present information to her doctor in a way that will make him consider whether or not she’s had undiagnosed JIA for the past eight years.

It is astonishing that no doctor has ever asked the right questions to put the pieces together.  Unbelievable.

Suggestions on what data my niece should track,
and how to artfully feed her doctor the right information
so  that he can accurately determine whether or not
she should be referred to rheumatology
would be much appreciated.
Message me if you’d prefer to remain off-the-record: warmsocks.blogquestions@gmail.com

Computers in the Exam Room

Does your doctor use a computer in the exam room? Some people think that computers are a great way to keep track of patient information.   Others see some advantage, but problems in the implementation.  There are also a few Luddites who oppose this change simply on principle.   I’ve had good experiences, and bad experiences, and believe we have a long way to go before computers are as helpful as they could be.

There are two separate issues.  The first one is quite significant:  is there software that will do what doctors need it to do?  The other issue is how computers affect the doctor-patient relationship – definitely another significant factor!

In every other field, the best way to buy software is to define what you need to do, then look for programs that will meet that need.  To date, it appears that the accountants are shopping for software to meet their billing needs, without consulting physicians to determine what doctors want or need.  Not being a doctor, I can’t really elaborate on that, but when doctors and nurses spend more time cursing the software than they do seeing patients and documenting the encounter, there’s obviously a problem.

As a patient, I’ve seen that computers in the exam room have an impact on the doctor-patient relationship.  The doctor’s behavior is important.  So is room setup.  Both of these issues need to be considered.

One doctor I saw had exam rooms set up like this:

This is obviously a bad way to arrange a room.  There’s a huge desk acting as a barricade between the doctor and the patient.  When the patient is sitting in the chair, the doctor must look away from the patient in order to see the computer screen.  No matter how caring a doctor might be, the patient isn’t going to perceive it when the doctor steps into the room, nods and waves at the patient, sits behind a desk to face the computer, and focuses on data entry.  In this room configuration, the computer literally comes between the doctor and the patient.

In contrast, I’ve been in other exam rooms that handled the computer’s presence better:

Both of these room configurations allow the doctor to sit with the patient.  No computer comes between them.  My preference is for the room on the right, where the doctor is still 45° to the patient when looking straight at the computer screen.

These illustrations aren’t the only types of rooms I’ve seen.  At Children’s Hospital, my daughter’s rheumatologist sits at the end of the exam table and talks with her.  The computer is clear across the room, and data entry is done by a scribe; at the end of the appointment, the doctor clicks a few buttons.  The computer seems to be a tool that helps provide prescriptions and information, not a deity to be worshipped by everyone in the building.

About eight years ago, I saw a doctor who carried a laptop from one room to the next.  At my first appointment, he grinned and said that he found it easier to keep his notes on computer instead of paper.  It didn’t affect the exam or our rapport.  Everything seemed normal, except that he typed his notes instead of handwriting them.  It worked well.  That would be ideal (and should be easier today, with tablet computers).

My favorite way of handling computers, however, is the doctor who keeps the computer in his office and out of the exam room entirely.  He obviously pulls my file up to refresh his mind before coming into the exam room.  We talk and he does an exam, then he returns to his desk to type his notes while I dress, and there’s a prescription waiting at the front desk by the time I check out.  It seems the most efficient, and the computer isn’t at all intrusive.

The worst computer setup I’ve ever experienced had the computer behind the doctor so that he had to turn his back to me.  Or maybe that was a good thing – I was able to read over his shoulder.  When he typed, “no pain on movement” I was able to ask, “Why would you say that?”  He was astonished (1) that I was looking over his shoulder, (2) that I questioned him, and (3) that he got it wrong.  He had asked if I could move my wrist, not if it hurt to move it.  Huge difference – and we never would have known if I hadn’t looked at what he was typing.  It would be incredibly easy for doctors to project their computer screen onto a wall so that the patient could see what’s being said.  Patients might not feel quite so ignored while doctors are typing, and we’d know that the information going into our chart is accurate.

As more doctors switch to electronic medical records, patients will insist on the computer being a tool to help, not an interference.  We will refuse to see people who make us feel like saying My Doctor is a Computer!

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Share your experience.  Do you like computers in the exam room, or does their presence cause problems?