I had to save my own life. Seven years ago I was dying of cancer...but I didn't know that yet. I went to my doctor because of "stomach pain"; it hurt just below the rib cage about, two inches above and left of the navel. I said I thought I might have "an ulcer or something." The doctor's mind fixed on my guess at a diagnosis, and five minutes later I had a prescription for something to help an ulcer. This was in August, 2000.
My doctor's error? "Anchoring", a type of attribution error. Doctors are taught to seek the simplest solution. Though he did vaguely mention the possible need for a colonoscopy, given my age (53), that moment passed quickly, almost unnoticed.
Two weeks later, I was in the emergency room because of "running at both ends". The attending doctor collected a stool sample (right out of my "stool"), then came in and said, "There is blood in the stool, with a very high white cell count, but we can't yet identify an organism," meaning he thought I had an infection. I was thinking, "No bug? Sounds more like cancer!", but I was too weak to speak and my own fear made me shy away from saying anything later.
I took Cipro for a week (by the way, that sensitized me, and a dose earlier this year of the related Levaquin nearly killed me with anaphylaxis. It also cause minor, but permanent, hearing loss). Had I been a bit stronger, I'd have demanded a colonoscopy on the spot. But, the doctor having committed an error of availability—I seemed to have gastroenteritis—was sure it was an infection. He'd been taught, "Hoofbeats don't mean zebras."
A few days after the ER visit, my doctor phoned to say they'd identified Enteromonas in the stool. Maybe I'd caught that on a trip to Japan in June? When I looked into it, I wondered how that rare bug could have a 3-month incubation. I've concluded since that the bug was from ER contamination. That hospital is full of it!
After another visit to the ER, with a similar outcome, I simply dropped by the doctor's office and asked his receptionist (also his wife...is that a red flag or what?), "Dr. B has mentioned getting a colonoscopy. Who does he usually send people to?" She gave me the name, agreed to phone in the needed referral to Aetna, and I managed to see the Gastroenterologist three weeks later.
Funny thing, there, one of his first questions was, "How'd you get in here so soon? I have a 3-month backlog. Did you tell then you are bleeding?" I said I had. He looked me full in the face and said, "I can see that. Your blood count must be about 9." Normal is 12-16.
He was straightforward. I saw him on a Monday. His usual day to do colonoscopies is Thursday, but the coming Thursday was Thanksgiving, so he scheduled it for Wednesday, pushing aside other scheduled stuff. He said there were two or three possible diagnoses, including cancer, but that he was hoping it was "only" infectious colitis. By Noon Wednesday, I had a photo of a cancer the size of my fist. By the way, the pain was mis-located. I have nerves that hook up in a funny way; I should have felt pain lower and to the right.
I could go on and on with this story. The gastroenterologist was the only doctor in the whole year-long saga (until the end of my Chemo in June 2001) who would answer questions "normally". For example, rather than talking vaguely of "better chance" and such, he said, "After you have this removed, you'll have a 15-40% chance of 5-year survival. With Chemo, you can add another 25% chance of survival."
Later, when I told him how many cancerous lymph nodes (7 out of 42) were there, he said, "This is grave. One-year survival is 15%, and only 35% with Chemo." I know some people don't like to hear things this bluntly, but I am an analyst (compulsively so, according to friends). Numbers help me plan, and boy, did I need to plan! I had a 12-year old son who might be soon orphaned (He's in college now).
But the point here is, I had to push, prod, and bully at least three doctors to get, first a proper diagnosis, then timely treatment. I forced myself on a surgeon, to the point that I got my operation on the day he'd originally planned for a "first visit." I spent the three days prior to the operation in hospice care, being fed via IV with 3 days' nutrition per 24 hours, to make me robust enough to survive the operation. The hospice was ready to "dispose" of me if I weakened instead. How many people do you know who were in a hospice, and came out alive?
This experience is but one, and the most nearly terminal, that showed me I must be my own "best friend" when I contact the medical profession. My present family doctor is better than most. When I see him, it's not "10 minutes and out" as the insurance company would prefer. He takes time to discuss and to consider alternatives. I prefer them a but pushy, I can always push back if I think he's too aggressive. But I hate dragging a doctor uphill.
However, more than most, his office is full of drug paraphernalia. That is: calendars, pens, and notepads with prominent advertising messages, and two stacks of "educational" flyers supplied by the drug dealers...er, pharmaceutical representatives. His examination rooms are plastered with colorful anatomiacal posters, all supplied by drug companies and proudly proclaiming it. To me, these are Demosthenes' [oops; a friend pointed out it was Diogenes. See comments] Lantern: Exposing a not-quite honest man. I'm still looking for a doctor with a "clean" office and exam rooms.
Listen to me, people: Doctors are HUMAN. YOU must be your own advocate. YOU have to ask—at the very least—three questions:
- "What else could it be?" – Prod the doctor to consider other possibilities, and to test as needed to eliminate the most dangerous ones first.
- "Is there anything that doesn't fit?" – Like the lack of a bug in my bowel: I had the right diagnosis, but lacked courage to state it; the doctor's incorrect diagnosis caused nearly two months' further delay.
- "Could there be more than one problem?" – Some people with chest pain have both acid reflux and angina. In fact, they frequently occur together in overweight people.
Along the way, he makes the subject clear: both doctor and patient are human, with emotions, fears, unique histories and experiences that color everything. How many doctors have forgotten the advice of Dr. F. Weld Peabody in 1925: "The secret of the care of the patient is in caring for the patient" (My emphasis; quote on p54)?
How many remember that "what we know is based on only a modest level of understanding" (p134)? There are three problems:
- Not everything is known. There is much that doctors don't know.
- No doctor knows everything that is known.
- A doctor's prior experience, and the disorders that are most common in his or her current environment, cause some things to come to mind and not others, so only a part of the knowledge a doctor does have is brought to bear on the case at hand.
Dr. Groopman relates his own saga of six doctors and four diagnoses, leading to surgery on his own hand. Is such a case unusual? Not really. Had he not been a doctor himself, he might have presisted a little less, and perhaps taken the first treatment offered, and been sorry of the result. But he recounts several stories of patients or friends of patients who wouldn't take a first diagnosis when it didn't pass the "gut test", and finally got a better outcome.
Medicine, like democracy, requires the participation of an educated public. It is of too great value to leave only in the hands of the "professionals". Do not be a "passive patient." Be a consumer. My doctor is a consultant, not the god of my medical care. It took a long time for me to gain this viewpoint. We need to instill it in our children.
Also, like democracy, to quote a proverb, "It's the worst system there is, except for all the others." Thanks to Dr. Groopman for producing a guide to safer navigation!
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2 comments:
A cogent and reasoned snapshot of the situation in medicine. You can find several comentaries along the same lines on my blog.
...always thought it was Diogenes with the lantern, searching for an honest man.
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