A 30 year-old woman with blood in her stool on and off a couple times a week for 6 months struggles to figure out whether or not she needs a colonoscopy – and how to get her doctor and insurance company on board. Navigating competing interests in healthcare to get satisfaction when it comes to your care.
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On today’s show….I want to tell you about a conversation I had a few weeks ago with a 30 year old woman named Maria who was having bright red blood in her stool on and off a couple times a week for the last 6 months. Now, when we talk about blood in the stool, why is it important to distinguish between bright red blood versus other types of blood?
It’s because the appearance of blood in the GI tract can tell you a lot about where the bleeding is coming from. Bright red blood suggests a bleeding source very low down in the GI tract – like the anus or rectum, so the blood is coming out at the very bottom of your colon and it’s not mixed in with any stool, so it looks bright red – like regular blood. Like when you get a cut. And sometimes that’s exactly what the bleeding is from. It’s from a fissure in the anal area which is essentially a cut at the very end of your colon right where the stool exits. If the bleeding is coming from a little higher up in your colon, it’s usually mixed in with some of the stool that’s sitting around, and it looks more maroon colored.
Bleeding from your upper GI tract – your stomach or small intestine causes tarry black stool that we call melena (the original Greek term “melaina” means black). Why is it black? Because enzymes higher up in your intestine break down and digest the blood as it moves through your GI tract, and this gives it a black color and a strong, foul odor. And when I say strong and foul I am not exaggerating. If I walk into the emergency room, I can tell right away if someone is having an upper gastrointestinal bleed, because I can literally smell the melena before I even see it. And it does look exactly like wet sticky tar.
But Maria wasn’t having melena. She was having small amounts of red blood in the toilet bowl and on the toilet paper. Not a ton of blood each time, but it was happening around two to three times per week – almost every other day. She wasn’t having any pain with bowel movements which people with anal fissures usually have. Maria had seen a gastroenterologist, and he had done a rectal exam, looking for fissures as well as hemorrhoids – which is exactly what should be done if someone is complaining of bright red blood in their stool. But it’s the next step in Maria’s evaluation where things get a bit tricky.
Maria was not my patient. She was not under my care. She was a friend of a friend. And the friend had asked me if I could talk to her about what her gastroenterologist was recommending. Maria’s medical care was through an HMO – which stands for health maintenance organization. The difference between an HMO and a typical fee for service, point of service, or preferred provider plan is that the HMO is both the insurer and the service provider, whereas with those other types of plan the insurance company is one entity, and the provider is another completely separate entity – either a doctor in private practice, a hospital, a medical group, etc. Now let me be crystal clear on this next point: HMO’s can and do provide excellent medical care. But one thing to consider is that with this model, the fewer procedures an HMO does, the more money they save. So on the one hand, that’s good, because you’re less likely to get an unnecessary procedure; but on the other hand, that can sometimes make it a bit more challenging to get a procedure if there’s not a really clear indication for it.
In a fee for service system where health care providers are paid for each service they perform, the more procedures they do, the more money they make, so that’s not ideal either because you may end up with the opposite problem – an unnecessary procedure that you don’t really need. And that happens pretty commonly in our medical system where if the insurance company is willing to pay for a procedure then the provider will frequently go ahead and do it. The six most common surgeries that are done in the US that are often not medically necessary, include pacemakers, cardiac stents, back surgery – especially spinal fusion, hysterectomy, knee and hip replacements, and C-sections. And these are often situations where there is a less invasive and less costly option, but the doctor or medical group chooses the more invasive surgical option because, well, because they’re going to make more money.
Now there are still some checks and balances in that system because the insurer has to approve the procedure ahead of time, and the procedure has to fall within the guidelines of accepted practice. So for example, with colonoscopy, there are specific indications like a change in bowel habits or unexplained anemia or a history of polyps or screening for colon cancer if you’re 45 or older. These are all indications for a colonoscopy that an insurance company will approve. But here’s the thing, just because the insurance company will cover the cost of your colonoscopy doesn’t need you mean you need one. And vice versa: if your insurance company is saying they’re not going to cover the cost of your colonoscopy that does not mean you don’t need one.
So what we have here is competing financial interests. And you need to be aware of these economic realities and how they impact the care you’re receiving. Ideally, doctors and health care systems are making these decisions based on what is in the best interest of your health, but that’s not the only criteria they’re using. And that’s the predicament Maria found herself in. The doctor in her HMO had told her that because she was young, and she didn’t have a family history of colon cancer or other worrisome symptoms like abdominal pain, weight loss, anemia, or a change in her bowel habits, she did not need a colonoscopy. And according to guidelines from organizations like the American Society for Gastrointestinal Endoscopy; that’s true. I know a thing or two about those guidelines because I was on the Standards of Practice committee that helped to create them. And those guidelines say that if somebody is having intermittent rectal bleeding and they’re less than 40 years old and there are no alarm symptoms or risk factors, they don’t need a colonoscopy, but they should get a flexible sigmoidoscopy, which is generally done without anesthesia, and just looks at the bottom 1/3 of the colon. So the goal there is to exclude things like hemorrhoids or a fissure or inflammation in the rectum. But the guidelines go on to say that if the sigmoidoscopy is negative, they should then have a colonoscopy.
Now the reality is we can’t do a sigmoidoscopy in every young person with rectal bleeding. Nor do we need to, because the majority of those people don’t have anything worrisome going on in their colon and don’t need a colonoscopy. When I see a patient with rectal bleeding, I ask myself 2 questions: 1) is what is the most likely diagnosis and 2) what is the most lethal diagnosis. Fortunately, the answers to those questions are usually different. In the case of rectal bleeding, the most likely diagnosis is hemorrhoids, but the most lethal diagnosis is colon cancer. So statistically speaking, Maria was much more likely to have hemorrhoids than colon cancer. But I want you to be aware that in the last 2 decades, rates of colon cancer have increased dramatically in young people: 500% in children ages 10 to 14, 333% in teens, and 185% in young adults.
Lots of reasons behind this but more processed food, less high-fiber fruits and vegetables, and less exercise, are some of the factors. Colon cancer is now the leading cause of cancer deaths in men under 50 and the second leading cause of cancer deaths in woman under 50. So while the guidelines say patients under 40 with intermittent rectal bleeding and no risk factors should have a sigmoidoscopy first and then a colonoscopy if that’s negative, Maria’s gastroenterologist told her she didn’t need either. And she was worried.
I told Maria to make sure to document her concerns on the patient portal. Not in a threatening way, but just in an official way. So there was an actual record of it as opposed to just a verbal conversation. In a situation like this, you want to make sure the doctor has a complete understanding of your symptoms. The best way to do that is to write something out and send it to them on the patient portal or in an e-mail if that’s available. That helps you to organize your thoughts about what’s going on and present them in a clear and compelling manner. And just as importantly, it creates documentation that you have these concerns, and they have been communicated to your healthcare provider. And this is not meant to be done in a threatening manner: “give me my colonoscopy or you’re in big trouble!” But it does create an opportunity for the physician to review the situation again, and maybe reconsider their recommendation. And yes, it does add a little bit of pressure to make sure they’re confident about that recommendation.
Maria did send that message on the portal. A polite, well written note that said that she was really concerned about the bleeding because it had been going on for six months and was happening almost every other day. And she finally get her colonoscopy. And it showed – drumroll – the most likely diagnosis. She had some internal hemorrhoids that the gastroenterologist had not seen on rectal exam. So that was the cause of her bleeding. BUT the colonoscopy also showed a large polyp halfway up her colon. Now, that polyp was completely asymptomatic and had nothing to do with her bleeding, but it was the kind of pre-cancerous polyp – called an adenoma, with a risk of turning into colon cancer over the next 10 years. In 10 years Maria would be 40, and still not at the age where we recommend a screening colonoscopy, which is age 45. So it really was a bit of luck that she had the blood in her stool that led to the colonoscopy that discovered the pre-cancerous polyp that was removed. And because of the large size of the polyp, she’s now on a schedule where she will get a colonoscopy every few years to check for more polyps.
So let me leave you with three takeaways about navigating the medical system to get the care you need:
1. Be familiar with the guidelines. What is the standard of care for the symptom you are experiencing? These are published by professional organizations within that specialty, and they are available to the public.
2. Even if what the physician is recommending is within the standard of care, if you feel like you need something above and beyond that, in addition to having a conversation with your doctor, I recommend that you also document your concerns through the patient portal or in an e-mail.
3. There’s a fine line between a gut feeling that something worrisome may be going on, and irrational fear or paranoia. Make sure you’re basing your concerns on the former and not the latter. Having a conversation with someone who is well informed, or even a formal 2nd opinion with a different doctor can help you figure that out.
So that’s it for this episode of the Gutbliss Podcast on competing interests in healthcare and getting satisfaction when it comes to YOUR care.
Coming up next week, gluten face – real or imagined?
