This is a rant. Just being honest up front. I’m frustrated right now. Part of this touches on a new diagnosis I was going to blog about here, because it derives directly from the MTHFR genetics. I promise, I’ll come back to that more fully later, in another post. Right now, this post is about communication.
First some background. Last week I phoned my clinic to make an appointment for chest pain upon exertion, that stopped when exertion stopped. I was instead (quite properly, but frustratingly) sent to the ER, where I spent another 24 hours insisting that I felt FINE before being transferred to the Cardiovascular Center, where I spent ANOTHER 24 hours. Of course, in those circumstances you are poked and prodded, hooked up to various machines that don’t like you, get a bunch of tests, etc. If you are lucky, like I was, you get to come home with some new diagnoses, a bunch of instructions, and maybe an extra temporary hole or two. Being my kind of luck, I was also seriously glutened by the hospital’s glutenfree food, spent a few days feeling horrid and sleeping, and another few days breaking out in hives (front, back, arm, and face). Jolly.
Now, that was the GOOD part! Because every nurse and doctor I spoke with was knowledgeable, competent, courteous, engaged, and compassionate. Most of them were also informative, interested, entertaining and amusing, which was a definite plus. I had interesting conversations with them, and was honored to hear phrases like, “I didn’t know that! Thank you for teaching me about it.” “You’re more special than you think.” “I’m glad I met you.”
I had gone in with chest pain, a classic presentation but not a classic cardiac cause. One positive stress test and one negative cardiac catheterization later, it was clear that it was time to move on to the next step of the differential diagnosis. In the last couple hours before I was discharged, 1 cardiologist, 1 cardiology resident, 1 nurse practitioner, and 1 nurse all at different times looked me in the eyes and said, “You have an appointment coming up with your primary care doctor. It isn’t soon enough. Get them to move it up.” You see why I thought this might actually be important?
By the time I made it home on the day of discharge it was too late and I was too tired to phone the clinic, so the next morning that was the first thing I did. They couldn’t get me in with my primary care provider, but they found an appointment for someone on her team. That’s where I was this morning, and I came home cranky because I was unhappy with how the communication was handled. I’m venting some examples of the communications that bothered me. Pay attention to the pattern of information sources, and the flow of information in the conversation. That’s probably more important than what was actually said. Think of flipping the clinic, and then think again about just how that ought to work.
[NOTE: These are excerpts from a longer conversation, not a complete transcript.]
Cardiac or Not? Anemia or Not?
DR: Looks like they did a good job. [recites list of what I’ve had done medically in the past week] Do you want a referral to a cardiologist for that left bundle branch block? There really isn’t anything they can do, but I can do that.
ME: I think the cardiology people have done what they can for now.
DR: Well, it really isn’t your heart. And you’re not anemic.
ME: Yes, I am.
DR: No, you’re not.
ME: It’s on my active problem list.
DR: It shouldn’t be. Your hemoglobin is fine.
ME: Of course, it is. It’s the serum ferritin that isn’t.
DR: That’s not anemia, that’s low iron. See what I mean? You don’t have anemia.
ME: My hemoglobin is ALWAYS fine.
DR: Then you were never anemic.
ME: Oh, God!
ME: [deep breath] OK. My hemoglobin is always fine. And I almost died of carbon monoxide poisoning because all the docs thought hemoglobin was all they needed to check.
DR: Your serum ferritin has ranged from 70 to 40 in the past five years.
ME: Yes, but when this started, my serum ferritin was 11. My fingers were gray. My skin was gray. My eyes were gray. My hemoglobin was low normal. And I almost died of carbon monoxide poisoning before someone would check my ferritin and start treating me for anemia.
DR: But you’re not anemic.
ME: I’m not anemic RIGHT NOW.(*)
DR: I don’t know why this is here.
ME: Please. Don’t. Don’t take it out of my diagnosis list.
DR: Well! I didn’t know you have strong feelings about that.
ME: It serves as an alert to my care providers that this is something that needs to be monitored.
(*) [NOTE: Yes, “Anemia is strictly defined as a decrease in red blood cell (RBC) mass.” So technically, on a simple level, he was accurate enough. The idea of what exactly IS “low normal” hemoglobin is something that is pretty hotly debated in the literature, including findings that “low normal” carries its own risks. For example this statement from UpToDate: “Studies in older adults with hemoglobin levels in the “low normal” range according to WHO criteria have linked these levels to declines in performance as well as increased morbidity and mortality.” And then there is the subtlety of what are differences in types of anemia. What I have/had is Anemia of Chronic Disease, which most likely originated with the then undiagnosed celiac disease and was exacerbated by the also then undiagnosed MTHFR deficiency.
“Hemoglobin values will generally reach a low normal range of 9.5–10.5 g/dL and remain there within this moderately low range until the underlying condition is cured. If disease that results in blood loss is present, the person will develop iron deficiency anemia (IDA). ACD and IDA can be distinguished with a serum ferritin test.” Iron Disorders Institute: Anemia of Chronic Disease. http://www.irondisorders.org/anemia-of-chronic-disease
What I never got a chance to say in this conversation was that the doc who diagnosed me with anemia (assistant department chair of family medicine at the time) told me that in long-standing severe anemia the body throws every scrap of iron it can find into the hemoglobin in an attempt to keep the body alive, and that a chronic reading of low hemoglobin can be a sign of severe anemia. The docs who treated my anemia over several years, getting my ferritin up to that 40-70 range (out of a normal target of 100), are the ones who put in the diagnostic code and active problem list identifications. Unless he has a better and more appropriate code to enter to describe this problem, I personally feel safer leaving it as it was found.
Yes, I’m a bit on the defensive here. It’s a personal safety issue, and feeling safe. I discovered in the hospital that someone had deleted from my medical record my most serious drug allergy, and that scared me.]
ME: And they added a new diagnosis.
DR: I don’t see anything new.
ME: They added “with homocystinuria” to my MTHFR deficiency diagnosis.
DR: I don’t see that in the computer.
ME: [rummages in bag, pulls out discharge folder from hospital, ruffles through papers, finds the right one] See here, on page three of the hospital encounter description?
DR: That’s just your active problem list.
ME: But this line changed.
DR: Hunh. I don’t know what that is. I don’t know who added that.
ME: Dr. L took the patient history about it, so I’m guessing it was him.
DR: I don’t even know how you would diagnose that.
ME: I did some searching online. The screening questions he asked came directly from the NIH Genetic Home Reference.
DR: I don’t know what that is.
ME: It’s from NIH and National Library of Medicine.
ME: Homocystinuria is associated with embolism and liver disease. I’m already on baby aspirin, but I’m not sure anyone has checked my homocysteine levels. And liver disease was on the differential they mentioned in the hospital.
DR: What do you mean?
ME: The cardiac cath can only check the large vessels. In women, it isn’t unusual for the coronary artery disease to start in the microvessels. But that’s really hard to diagnose.
ME: The easiest way to diagnose CAD in microvessels is to rule out everything else. In the hospital they ruled out heart and kidney, and liver was another thing I heard them mention. I don’t know what else there should be.
DR: Well, they didn’t check your homocysteine levels, but they did check an indicator for them a year ago, so that’s fine.
ME: I don’t know the last time anyone checked my liver function. There is a blood test for that, isn’t there?
DR: Yes. Hmmm. No one has run that test in five years. Hmmm. OK, I can order that.
[COMMENT: Pay attention. This is where something started to go right, sort of.]
DR: So, how’s that incision?
ME: It’s fine. I had a little problem with it yesterday, but it’s fine now.
DR: Let’s listen to your heart and lungs. Unhunh. Lay back, please. Does that hurt? That? There? Please sit up. Hmmmm. Do you have asthma?
ME: Yes. Well, I did. After the carbon monoxide poisoning, my lungs were badly scarred.
DR: But it went away?
ME: Yes, the scar tissue shrank as it healed.
DR: Do you use an inhaler?
ME: No, I can’t. I’m allergic to them.
DR: What happens?
ME: I pass out.
DR: OH! Well, hmmm. I’m going to request a pulmonary function test, and we’ll mention that. So you don’t use an inhaler?
ME: I used to use Intal, but they quit making it. I stockpiled a couple, but I found the mechanism quit working after a while, even if there was spray left.
DR: Well, you can follow up on that with your regular doctor.
That was pretty much the end of the conversation. And it doesn’t seem quite as awful now that I’ve written it down, but it was very frustrating at the time. Why? The doc listened to me about some things and not others, didn’t seem interested in doing a differential diagnosis, and the impression I came away with was that this doctor didn’t take the other doctors or me seriously. I thought the argument about anemia was entirely unnecessary, and it alarmed me and undermined my trust in the doctor. He could have explained which definition of anemia he was using, and that would have helped, and perhaps opened the conversation to some of the other aspects of anemia that concern me. Since it wasn’t relevant to today’s meeting purpose, it only served to alarm me.
The information and explanations flowed mainly from me to him. He admitted not knowing certain things, but didn’t say he was interested or willing to learn or find out. Still, he didn’t shut me down when I tried to explain. He did listen and integrate the information. I was alarmed again that he wanted to send me right back to the docs I had just left, and I felt I had to work so hard to get him pointed in the direction of continuing the differential diagnosis process. After leaving, in doing more reading, I discovered that testing pulmonary function is indeed a logical next step for differential diagnosis of atypical chest pain, but that wasn’t something he discussed or explained, so I had the impression at the time that he was sidetracked from the purpose of the visit.
The visit wasn’t a total waste, and actually did achieve useful productive goals. I’m pleased to have the pulmonary function test and the liver function test in progress. Something will move forward while waiting for my next appointment with my primary doc over a month from now. It could have been a great deal easier and more clear. I could have gone away AWARE that he was genuinely trying to help, instead of feeling alarmed and distrustful. That would have been nice. Deep down, I think it worried me that I was providing medical information that he didn’t know, and he wasn’t giving me information that I didn’t already know. He wasn’t demonstrating his expertise. The dynamic around the information flow and sharing in these conversation snippets was patient-driven, yes, but imbalanced. Maybe I’m just being nitpicky?