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Join us as we delve into the experiences of patients with long-term complex conditions who are often met with disapproval or suspicion by medical professionals for being knowledgeable about their own health. Our guest, Denise Reich, a patient advocate, shares her insights on balancing self-advocacy with medical care, navigating the health care system, and the emotional impact of distrust from doctors. We explore effective strategies for patients to advocate for themselves, the role of patient advocacy organizations, and how health care professionals can better support and collaborate with informed patients.

Denise Reich is a patient advocate.

She discusses the KevinMD article, “The dichotomy of patient health literacy.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome back Denise Reich. She’s a patient advocate, and today’s KevinMD article is “The dichotomy of patient health literacy.” Denise, welcome back to the show.

Denise Reich: Hi, thanks for having me back. Good to see you.

Kevin Pho: So Denise has been on multiple times, giving valuable perspective as a patient. Go to KevinMD.com/podcast to hear her story and her prior episodes. But today let’s talk about your most recent article, “The dichotomy of patient health literacy.” What’s this article about?

Denise Reich: What this article is about is talking about the fact that as a patient with a complex or less common condition, or constellation of them, because a lot of us have multiple comorbidities, we’re sometimes at odds with what doctors believe that they should encounter when they encounter patients.

And unfortunately, a lot of the things that we as complex patients are actually told to do are actually some of the same warning flags or red flags as Munchausen syndrome. And so unfortunately, a lot of the time when we advocate for ourselves, it raises red flags, or we’re treated with suspicion, or sometimes hostility. And that obviously causes problems.

And a lot of the time doctors also, unfortunately, don’t have an understanding that as complex patients we need to see multiple specialists. We are familiar with the name of our condition, or our treatment, or the tests that may be run to assess us. And it unfortunately causes a bit of a problem.

Kevin Pho: Now, what are examples of some of the things that you’ve done as a complex patient that raised red flags?

Denise Reich: Well, for instance, seeing multiple specialists. I have CVID, which is common variable immunodeficiency, which is a primary immunodeficiency. It affects B cells and antibody production, but it also reaches its tentacles into a lot of different body systems. So as a patient, I have to see doctors in multiple specialties.

And I also have hypermobile Ehlers-Danlos, which was diagnosed by genetics. Genetics does not treat it. So again, I am going out to see multiple specialists, for instance cardiology, ophthalmology, orthopedics, to treat this condition.

And unfortunately, if you’ve seen a lot of doctors, that absolutely raises a red flag to some new doctors when they meet you. I actually had a very disturbing incident with a resident earlier this year, where they looked at my chart, didn’t speak to me, and wrote a very long paragraph in my chart about how I’d seen all of these specialists. Obviously I spoke to him, I spoke to the attending, and was able to say, well, this is why I saw this doctor, this is why I saw that doctor, I’ve seen these doctors for 10 or 15 years, some of them. And it was resolved, but he absolutely hit the ground running with suspicion because he saw so many different specialties in my chart.

And some of them, a lot of the time with patients, we have no choice over that. Like for instance, I have four ophthalmologists. That is not my choice. But they are so specialized that they deal with different parts of the eye. So there’s one ophthalmologist that deals with the retina, and I have a scar on my macula, which is probably Ehlers-Danlos related. I have dry eyes and problems with my corneas, so I see a cornea doctor. And then I have anatomical narrow angles, which again is probably related to Ehlers-Danlos, so there’s a third one for that.

And then ironically, none of them can do the testing and write me a prescription for glasses or contacts. So on top of seeing three ophthalmologists several times every year, I still have to go to LensCrafters or Costco or someplace like that to get a normal exam for glasses. That’s not something that I necessarily would prefer to do, but it’s required, because the specialty is so exact that you can’t see one doctor to address every single issue.

And in a way I do prefer that, because that means that they know their part of the eye backwards and forwards. But that does mean that when you look at my chart, you see four names.

Kevin Pho: So when that resident wrote the note, and you saw it on my chart, what exactly did that resident write to make you feel that that resident was suspicious of you?

Denise Reich: The tone was very, very accusatory. He basically said, she’s seen, he listed like every specialty I’d seen. And he said, she’s seen neurology, she’s seen this, she’s seen that, there may be other doctors that we don’t know about. And the way he said it, the tone was very accusatory.

And then for instance, he said, she only saw this doctor one time. And if he had actually looked at the chart, he would have found out that that was for a surgical procedure. So yes, I only saw that doctor one time, because they performed a surgery.

So he unfortunately had very obviously looked at the list of names without really understanding what those names meant. And the other thing he had done is he hadn’t realized that most of the names on that list I had seen for a very long time. I had not been hopping back and forth to different doctors.

And in the cases where I had seen them only a few times, it was usually because my regular doctors had asked them to answer a question. Because that is the other thing you will find in complex care, where a patient has an issue that the specialist isn’t sure that they can deal with, so they do send you to talk to somebody else. And a lot of the time it’s to answer a single question, and then you come back.

Kevin Pho: So what that resident wrote in his note, was that different from how he interacted with you in person?

Denise Reich: Yes, it absolutely was. He was very smiley in person, very smiley, seemed very convivial. And he did ask, you know, do you have a primary doctor, who makes your medical decisions? And that did raise a little bit of a red flag to me.

And I did try to explain to him that there are about three doctors that make my decisions, or doctors that kind of consult to make my decisions. Because my primary care doctor is kind of controlling all the chaos that happens around. My immunologist that I see that oversees my CVID treatment absolutely has to have an opinion if something is going to happen. Cardiology also has to have an opinion if something is going to happen. So that’s kind of the big three.

But they all have to be in the loop if there are any decisions that are going to be made about surgery, about any type of medication that I’m going on. You know, frankly, when I went to a new dentist, my dentist wanted notes from both my cardiologist and my immunologist, just because of the risk for me as an immune deficient patient.

So all three of them are in the loop, and that is not anything unusual. They don’t all deal with the same part of the body or the same body system, so they all have to have some input when anything else is going to happen. And I don’t think that’s normally the case with patients that perhaps don’t have the more common condition, where they don’t have multiple doctors that have to be consulted if anything’s going to happen.

Kevin Pho: You talk in your article a little bit about that tension between patients who are really informed about their disease and the potential for doctors feeling undermined because of that patient knowledge. So talk a little bit more about that tension.

Denise Reich: Well, there is some tension when you go in and you know the names of the tests, you know how to read your own labs. But the thing is, if you have those labs all the time and you have treatment all the time, you do after a while understand what’s happening with your own body. And no, I don’t understand in the way a doctor with the education and years of specialty training has.

But as a patient, I am absolutely actively encouraged to be educated. For example, with immune deficiency, they have patient seminars all year long. They have literature, they have online Zoom courses, they have comic books even, so younger kids can learn the name of their disease and the name of the moving parts of the immune system.

So this is something that I’m actively encouraged to do, that perhaps a patient that’s seen their doctor once a year is not encouraged to do. And it absolutely does, I think it’s helpful, because I can go in to a doctor and say, well, my sed rate is usually this, my white count is usually this, the last time it was tested it was this number. But that is not something that the average emergency room doctor, or the average new physician you’re seeing for any issue, is used to hearing.

I mean, like, this is the folder that one of the foundations, the Yale Center for Immunodeficiency, gives you, that has all of these patient education leaflets and graphs and definitions of what the different parts of the immune system are and how our treatment works. It’s a lifetime treatment. It’s probably a lot better for us to know what’s going on than to just sit back and get my IV and not understand.

And the foundations, by the way, are aware of this. I mean, I brought this to show, this is a blank one. This is a card that the Immune Deficiency Foundation actually produces and distributes to patients, that has some bullet points for new doctors. It’s mostly geared towards emergency situations, that you can hand this to an emergency room doctor. But I found it helpful when I’ve seen doctors in other specialties as well, to hand them this.

Because it is assuming that the doctors you meet are not necessarily going to be familiar with a patient with an immune deficiency, and maybe they saw it during their rotations, you know, when they rotated through an immunology department. But it does assume that the doctors are not necessarily going to have encountered a lot of patients with this condition.

And they haven’t. I mean, I actually had an issue with another resident where what they put on my chart was that I had an IVIG deficiency. After I had explained it to them, and I boiled it down to a two sentence definition, I’m not going to sit there and go into details with them, but I boiled it down to a very, very quick definition, and he still wrote down that I had an IVIG deficiency.

Kevin Pho: So from your perspective as a complex patient, tell us your ideal relationship with a physician.

Denise Reich: I think the one that I have with my treating doctor that I’ve had for a long time is the ideal, to be honest, because I am very fortunate that I’ve had some very good doctors cross my path.

So one thing is, don’t expect us to be like patients that only come in for their physical once a year. They understand that we’re going to know the names of tests, we’re going to know the name of our condition, we’re going to know different treatments. And they are very open to discussing those things with us.

For instance, my immunologist does labs every three months, because he has to. Because of the immunodeficiency, you just have to monitor certain things. And we will sit there and discuss the labs. My hematologist does the same thing. She will tilt the screen towards me when I’m in the room with her, and we’ll just go down them one by one. You know, this is your white count today, this is your crit, oh, your hemoglobin’s a little low, but we’ll do this, you know.

And so it’s more of a collaborative effort. And obviously I’m not dictating the standard of care, but I am more informed. She’s not just saying, oh, you have a boo-boo, here’s a Band-Aid.

So it’s more collaborative. It’s more respecting that I as a patient may have some familiarity. And it’s also understanding, I think, that as a complex patient we do have a very different life than your garden variety, sees the doctor for their physical, gets maybe their preventative care when told to, but doesn’t necessarily have any need to take an active interest in their care on a day-to-day basis.

Kevin Pho: We’re talking to Denise Reich. She’s a patient advocate. Today’s KevinMD article is “The dichotomy of patient health literacy.” Denise, as always, we’ll end with some of your take-home messages that you want to leave with the KevinMD audience.

Denise Reich: The takeaway message I’d like to give to doctors is that if you have a complex patient, they are not trying to undermine you. And they also should not be treated with suspicion, because the world that they live in is different than your patients that might see you once a year for a physical or once for a one-time injury.

They live in the world where they’re being treated constantly, they’re being monitored constantly, they’re dealing with doctors in many different specialties because their illness affects many different body systems. And they are not trying to undermine you. If they thought they could do it alone, they wouldn’t be in your office.

So the fact that they know a little bit more about their illness should not be seen as a threat. And the fact that they see multiple doctors should also not be seen as a threat. If you see a lot of names in a patient’s chart, and sometimes maybe if you’re in, for instance, the emergency room, you don’t have time to sit there and look more. But if you’re seeing a patient in the office, maybe take a little extra time to ask them about their doctors if you have a concern. Take a little more time to ask them about the people that treat them on a regular basis.

Most complex patients like myself, I have my doctors’ addresses, I have my doctors’ phone numbers in my phone. If you want to call any of them, I’ll give you their information. And I have no problem with you speaking to them and getting more of a handle on how I am treated and why I’m being treated.

So just don’t jump to conclusions. And yes, there are a lot of red flags that are certainly very important to detect that condition. But keep in mind that if you have a complex patient with an established diagnosis, they’re probably going to know the names of their disease, they’re probably going to know how they’re treated, they’re probably going to be able to read at least some of their labs.

And they’re probably going to be in the doctor’s office way more than they want to be. Because I can tell you, out of all the things I’d like to spend my morning doing, sitting in a doctor’s office is not at the top of the list, or even close to it. As much as I appreciate the care I get from my doctors, the pleasure of their company so often is not something I wake up in the morning looking forward to.

Kevin Pho: Denise, thank you so much for sharing your story, perspective, and insight, and thanks again for coming back on the show.

Denise Reich: Thanks for having me.