Doctors should tell patients what their problem is

In My Humble Opinion
1

Dopers often post tales of their interesting medical experiences; here is one of mine from the early 1990’s.

Although it was quite annoying for me, I post this primarily to amuse. My condition was neither serious nor expensive. I’ll spoil the suspense by posting excerpts from a medical textbook about my disease:

[QUOTE=The Merck Manual, 12th Edition]
IRRITABLE COLON (spastic colon; Mucous Colitis)
…
Etiology and Pathology     … Patients tend to be tense, anxious, and emotionally labile…
Symptoms and Signs       Symptoms are extremely variable. … often mimicking appendicitis; sharp knife-like pains; or deep dull pain…
Treatment             The patient should be assured that his disease, though discomfiting, is not serious. The problem must be explained to him …

[/QUOTE]

The disease certainly was discomfiting; I had both the “sharp knife-like pains” and the “deep dull pain” as well as several other symptoms (severe chronic heartburn, irregularity, etc.). Indeed, the problem seemed so severe I hypochondriacally decided I probably had colon cancer! A main cause of Irritable Colon is emotional stress. Of course I was stressed – I thought I had colon cancer!

Someone recommended a doctor; the doctor took only referrals; I met with another doctor just to get the referral. (In hindsight I do see this was a mistaken approach.) I did not have a regular doctor. I did not have insurance, so all the drugs, procedures and doctor’s appointments were paid out of my own pocket. The referred doctor did indeed seem competent and probably diagnosed my condition right away, but he never told me. Thinking I had a severe problem, I continued to meet with the doctor at my insistence, getting the “barium milkshake” scan or whatever it’s called, etc. Not once did the doctor tell me what my condition was. The closest he ever came was to say “I can’t tell you you don’t have cancer.”

For that doctor’s benefit, let me review the very first two lines from a classic textbook describing the treatment for my condition:
“The patient should be assured that his disease, though discomfiting, is not serious. The problem must be explained to him …”

Now I suppose that the doctor might have provided information to the referring doctor thinking that I would see it from him. Whatever. If the “system” required that I pay for a visit to referring doctor just to get the 5-second summary of referred doctor’s diagnosis, and I wasn’t told such a visit was necessary, then I contend the system broke down. (BTW, give the doctor credit for one thing: he prescribed Prilosec which alleviated most of the symptoms, but this didn’t eliminate my worry. At that time, BTW, Prilosec was very expensive and a cheaper prescription drug would have also worked, but nevermind that.)

But wait. The punchline is yet to come. About this time I decided to move to Asia. (The fact that I thought I was dying of cancer may have contributed to that decision.) It seemed appropriate that I take a medical report with me, so I asked the Clinic for such.

“No. We cannot provide you with your medical records. We will only give them to a doctor.” (I am curious whether this is proper or not, but that is what they said.)

My friend was a PhD (a “doctor” :wink: ); I got him to write a letter requesting my medical records; they gave them to him!

Let’s be clear. The letter my friend sent contained no authorization whatsoever from me. Since his PhD training did not include M.D. lingo, it seems unlikely that his letter could have passed any “sniff test.” Yet, the Clinic() did in fact send my records to an arbitrary stranger without evidence of authorization … the same records they refused to send me. ( - I will identify this No. California clinic if PM’ed but don’t want to post the name publicly.)

It was only when I finally “tricked” the clinic into giving me my own medical records that I finally learned the name of my condition: “Irritable bowel syndrome.”

Thanks a lot, Doctor.

2

Yep.

3

You could have had the reverse. My (now ex) doctor was very flippant when presenting me with my diagnosis of polycystic kidney disease, noting that I should be aware that the PKD won’t kill me, but 1 of 7 PKDer’s die from aneurysms, blah blah blah.

How would I know this? It’s genetic! Doc, I’m looking at my file in front of you, where I wrote in heavy red marker over the family history section “AM ADOPTED, NO RECORD” as I always did when I had to complete that information. It wasn’t hidden, it was the front face page.

4

And all health care professionals should give a budgeting estimate. How much could it cost.

5

Most of us health care professional types have no clue about costs.

Docs need to explain to people what they’ve got and what it means. Waaay too many doctors suck at this.

I’m told rather often that I’m one of the better ones at explaining things decently, but I’ve had years to work on it. Giving both good and bad news in proper context and answering the questions that aren’t asked is hard. And it may take several visits. I’ve often spent over a half hour explaining what a certain disease meant for a patient, only to see him in follow-up 3 months later, and it’s like he never heard a word I said. Or read the handouts.

You don’t want me trying to explain medical finances to you, though. If I really grasped all that stuff I wouldn’t have gone into patient care.

6

The finances part is tough. Prices go up seemingly random amounts each year, sometimes how it’s charged will change (in my ophthalmology department, it may change from year to year about whether a particular procedure is charged per eye or a flat fee for one/two eyes), and insurance presence and type will drastically affect what a patient may have to pay. Doctors that are unsure need to get together with their billing person to look up costs.

That being said, I think telling a diagnosis is very important. I recently found myself wondering, over 20 years later, exactly what a particular disease was that I had. I know the treatment used, but I am confused about the diagnosis and how I may have contracted it, and that’s vaguely troubling.

7

I got a cancer diagnosis from doctor. He said of course we needed a biopsy to confirm, but there’s little doubt. The biopsy showed I didn’t have cancer. A lot of doctors suck.

8

What is the name of the book?:confused:

9

I knew someone whose parents were told she was cured of sickle cell anemia, or at least they heard that.:smack: So they ignored her constant sickle events where she would be in constant pain and immobile for days, saying ignore her she just wants the drugs(I’d be pleading for morphine in that condition myself) anyway long story short she had a stroke at age 18.

:smack:Now granted she was old enough to take care of her own health(she didn’t bother taking her folic acid and ate mostly junk food) but her parents apparently were never set straight by doctors that she had a TERMINAL ILLNESS and lived in delusion land.

10

I was apparently diagnosed with asthma by a doctor who never bothered to tell me. I only discovered this at age 22 when I got a rash and was suddenly getting short of breath while moving furniture: I told the nurse practitioner this and she snapped “your records say you’re asthmatic, so what did you expect to happen when you over-exerted yourself?” I’m what now?

I have no idea when the diagnosis was made, or how. I never had a doctor have me breathe into a peak flow meter. I know that when I was a teenager my pediatrician spend a lot of time listening to my back with a stethoscope one appointment and eventually called his nurse over to listen too. My mother says they didn’t tell her what they were so intent on listening to either. Helpfully she said “maybe it was then they decided you were asthmatic. but they could have been listening for a heart murmur like mine, too though they didn’t say anything like that either.” argh!

11

I’ve noticed with my own son’s pediatrician a strange combination of inattention and seizing onto random words and running with it, like my wife is just yammering random crap and she will mention a non-blood relative who has eczema which reminds her of the rash he has and the ped’s head will pop up and pronounce oh well then he will definitely have it too scribbles in record .:dubious:

Based on that I’m for purging childhood medical records LOL.

12

From the first post, it appears to be the Merck Manual.

13

Argh! indeed. And when people tell me this, because I know just a teensy bit more about the system, I’m left with a whole 'nother set of confusion. Like, so do you have asthma? Or did the doctor’s assistant’s secretary write the wrong ICD-9 code on a form one day? Did the doctor need to bill a test that’s frequently associated with asthma, and so he put the billing code for asthma on the paperwork? “Rule-outs” (as in, it could be asthma, but I think it’s something else, so let’s do this test to rule out asthma) often worm their way into patient’s files, and end up scaring the crap out of them later. Did someone else’s diagnosis end up on your file because someone’s cat jumped up on the table and toppled the files? (Yes, that kind of stuff really does happen, and did happen even more 20 years ago when everyone was still using paper files. You take a stack home to do charting, and gravity happens.)

Fewer than half of my patients know every diagnosis listed in the file their doctor’s office sends to me. The ones I really hate are the scary sounding ones - Congestive Heart Failure, is a big one - that people may not have heard. They know they retain water and have high blood pressure and they need to take a “water pill” everyday and when it gets really hard to breathe they have to go see the doctor. So they know the main symptoms, treatments and when to seek medical care, which is great. But they’ve never heard the words “Congestive Heart Failure”, and when I mention it in passing, they’re suddenly scared to death! “My heart is failing?! I just thought my ankles were swollen!”

And can we PLEASE take “abortions” off the OB intake sheet? Just type out “miscarriages”, please. You’re freaking women out when they’re in the office because they’re desperately trying to hold a pregnancy past 9 weeks, and I’ve got to write down how many “abortions” they’ve had on the clipboard they can see. Very tender subject.

I swear, 40% of what’s wrong with medicine is forms and billing. (Another 40% is lawyers and insurance companies, which make the forms and billing situation what it is.)

14

NM, wrong post.

15

Not only their files, but their heads. If a doctor mentions a condition that he’s looking for, it’s very important for him to tell the patient that he doesn’t have that when the tests come back negative.

The worst conditions for this (in my community, anyway) are multiple sclerosis and lupus. The patient has vague symptoms and the doc sends her for some tests, mentioning these things as possibilities. The tests don’t show anything, but the doc doesn’t think anything about it and never reports those results or what they mean. The patient still feels bad, and it can’t be the junk food, lack of exercise, or cigarettes so it must be that lupus or MS he was testing for. She tells her next doctor (she changes every year or so) that she has it, it goes in the chart, and it follows her wherever she goes.

In my experience, among patients who self-report lupus or MS, about a third clearly have it by history and/or have lab or radiology studies supporting it. Another third don’t appear to have it by history and I can’t track down any studies supporting such a diagnosis. Another third don’t have it by history and have studies weighing against it.

16

I had a doctor put down that I had genital herpes. Nope, he said later, you actually don’t have it. However, learning of this false diagnosis led to some pretty tense scenes between my husband and me until I got it straightened out.

It was just a heat rash, for crying out loud. And yes, I have another doctor now.

17

Denial can be incredibly powerful. I would not be surprised if the doctors had tried to explain things and the family just chose not to listen, or put their own spin on things.

18

My best friend was a paramedic student and she went to the hospital one day with an excruciating headache. She called me 5 days later and said that nobody seemed to be giving her a straight answer so when she was alone she grabbed her own chart and read it. That’s how she found out that she was dying of brain and lung cancer (small-cell sarcoma). She passed away 2 weeks later.

Moral of this story: demand answers and be your own advocate, or assign someone to be your advocate if for some reason you can’t.

19

Argh, I have JUST had this happen to me. I’ve had this weird pain on my right side for weeks now. Because of the timing when it first came up, my first thought was ovarian cyst and I went and had a sonogram and blahblah, even though they’re telling me it’s really too high in the abdomen to be anything cyst related. The results came in and the nurse called me an said things were, and I quote “normal”. That’s it, end of story. Well ok fine.

The next day the pain is worse and I wind up in the emergency room for a CT scan with suspected appendicitis. Turns out I don’t have appendicitis, doctor says CT scan is negative, well ok fine.

The NEXT day I start getting pelvic and hip pain, right where it would in fact make sense for an ovarian cyst, but it’s Saturday. On Sunday I get a call from the emergency room, oh we had someone take a second look at your CT and you actually do have a cyst (among other things that sounded terrifying and which I’ve since gone through much anxiety about but which after an abdominal sonogram proved harmless), and oh, it might be hemorrhagic.

So now I spend the better part of two days absolutely freaking out about just what sort of freaky cyst I could have that would show up on a CT but NOT on a pelvic ultrasound, only to find out, when I finally get a call from my ob-gyn on Monday that they in fact HAD found a small cyst originally, just hadn’t bothered to tell me because “ones that small never cause any problems”.

Yeah, fuck 'em all sideways. I can sort of understand why they were disinclined to attribute any of my pain to the cyst given my initial report of pain in the wrong place, plus its being so small when they looked at it, but they could have saved me rather a lot of anxiety if they’d just reported the sonogram results in full in the first place.

I still don’t know for sure what’s causing any of my issues, though at least the really bad stuff seems to be ruled out now.

20

When I was pregnant my obstetrician diagnosed/suspected a couple of conditions that can be pretty serious, but he never told me. I read my chart one day while waiting for him in the exam room, and made my own notes and eventually did some research in an obstetrical textbook. After that I made it a habit to read my chart before each appointment.

This doctor was an old school guy from back when it wasn’t common practice to discuss stuff - especially obstetrical stuff - with patients. Also, he probably figured that the information might scare me or that I wouldn’t really understand it (I was 16 at the time).