Patients don’t need quick diagnoses. They need accurate ones. [PODCAST]

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“The patient knocking on your door is not your enemy. They’re sick. They’re scared. They’re in pain. They don’t know why, and they’re hoping for an answer. If you can’t find the source of a problem quickly, it doesn’t mean it’s not there.”

Denise Reich is a patient advocate.

She shares her story and discusses her KevinMD article, “Patients don’t need quick diagnoses. They need accurate ones.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Denise Reich. She is a patient advocate, and she wrote the KevinMD article “Patients don’t need quick diagnoses. They need accurate ones.” Denise, welcome to the show.

Denise Reich: Hi. Thank you so much for having me on.

Kevin Pho: We’ll get into your article in a little bit, but first off, can you share your story and your journey to where you are today?

Denise Reich: My background is in writing and in the arts, and that’s pretty much what I’ve done for most of my professional career. I’ve also struggled with health issues my entire life and basically ended up being diagnosed with some genetic and congenital conditions when I was older than 30, which meant that I walked around with them for about 30-plus years. I did the best I could. I still managed to do a lot of writing and a lot of media work, so I struggled along with it as best I could, but eventually it did catch up to me.

And so now, unfortunately, my health conditions have gotten worse, but I’m still trying to use my voice as much as I can and use my talents in writing to advocate and to communicate what it’s like being a patient, and to try to advocate especially for rare disease advocacy and disability.

Kevin Pho: Share some of the stories that you’ve done as a writer, some of the advocacy issues that you talk about.

Denise Reich: Well, the article that most people have read is published in The Saturday Evening Post, and it’s called “I won’t apologize for having fun while chronically ill.” It brings up the point that, especially for those of us with invisible disabilities, you can’t necessarily tell how sick or how disabled a person is by looking at them, and that people with disabilities and chronic illnesses still have the same needs as everybody else. We need fun, we need social interaction, and we need to be among our friends. And unfortunately, a lot of the time, if you go out and do anything, people tend to accuse you of not really being sick. But my article basically just approaches the fact that being sick doesn’t mean you’re not human. You still have the same needs as everybody else.

Kevin Pho: And for other patients who have chronic disease, what are some of the best ways that you recommend that they advocate for themselves and other patients like them?

Denise Reich: I’m really big on paperwork. I’m really big on having the labs, having the results, having things in front of you, and also developing a really good rapport with your health care team, so that your doctors can talk to each other and go to that for you and be in your corner. I mean, it means so much more when one of my physicians contacts another, my specialists, to talk to them about a problem. That goes a lot farther than me trying to do that on my own.

But I’m a huge advocate of patients working with their health care teams, making them allies instead of adversaries, and also making sure that they have their own paper trails. They have everything set up so that if the doctor needs any of their results, any of their labs, here you are. It’s right here.

Kevin Pho: All right, so let’s transition now into the KevinMD article that you wrote. It was written at the beginning of this year. It’s titled “Patients don’t need quick diagnoses. They need accurate ones.” Now, for those who didn’t read the article, can you just walk my audience through it and share the story of why you decided to write it?

Denise Reich: Basically, I was on social media, and there was a doctor who had written a tweet that essentially said the most important thing is to quickly tell if the patient is sick or not sick. A lot of other doctors agreed with him, and a number of patient advocates tried to step in and say, “But wait, this is why patients don’t get diagnosed with things for 30 years, because somebody quickly decided they weren’t sick.” The doctor did not necessarily want to dialogue with us, which is absolutely fine. I’m a big advocate of people interacting the way they want on social media, so I don’t have an issue with that.

But I did think the other side of that needed to be shared, which is that we’ve got a lot of patients who spend 30, 40, sometimes even longer with illnesses that are hiding in plain view because doctors have decided that they’re sick or not sick. And also, there’s now a lot of literature and research coming out that shows that in very specific situations, doctors are missing things consistently and sending patients home. A big one is women with heart disease: Women with heart attacks present differently than men with heart attacks and get sent home from the ER. I know two people that’s actually happened to.

So I thought that it was really important to bring that point up and to kind of try to get across to the doctors that when patients are talking about this, we’re not trying to be accusatory. We’re not trying to tell you that you don’t know how to do your job. We’re just pointing out that there are a lot of us that are not being seen.

Kevin Pho: What are some of the recommendations that you can make to those in the medical profession not to overlook some of these patients?

Denise Reich: Check the details. That’s a really big one. And the two examples I can give you: My primary doctor really was instrumental in getting me diagnosed with my most serious conditions, and she went three for three. She did that by really scrutinizing things in my chart that didn’t seem right to her. The easiest one is that at every visit, every medical visit I’ve ever had since I was an adolescent, my heart rate was over 100 consistently. Nobody had ever commented on it.

She did, and she very quietly trapped me over a couple of visits. She took my heart rate while I was very calmly talking to her and finally said, “This does not seem right to me. Let’s send you for an echocardiogram. Let’s see if there’s anything cardiac happening that we need to know about.” And all it took was one echocardiogram to start me on the road to being diagnosed with the heart conditions that I have. But it’s because she paid attention, because she looked at something that was right on the record, on the first page of every sheet, on the vitals when I went in, that every other doctor and every other nurse had never stopped to look at. So the small details sometimes make a huge difference.

Kevin Pho: Now, there are some cases, and I’ve admitted I’ve encountered some cases myself, where the diagnosis obviously isn’t clear despite seeing multiple specialists and multiple tests, and there is a little bit of subjectivity in the art of diagnosis, which obviously is why it’s called the art of diagnosis. So what are your recommendations from a patient advocate standpoint on how clinicians can navigate that window of subjectivity where the diagnosis isn’t apparently clear?

Denise Reich: I think it’s important to make a distinction between “I don’t know” versus “There’s nothing here.” Because, I mean, I had another issue last year that took three different specialties to uncover. There really was a problem, but it just meant going to the right specialty to find it. And it made a tremendous difference that the doctors I saw said, “Well, I don’t see anything, but that doesn’t mean that there isn’t something there. It just means that I don’t necessarily have the tools to find it.” Being able to call in other doctors is very important, and it’s a lot more productive than shutting a patient down by saying, “No, you’re fine,” because that has happened to a lot of us.

Kevin Pho: And from your experience and the experiences of other patients and patient advocates, how often do you encounter doctors who simply say “You’re fine” versus “I don’t know”?

Denise Reich: Now, it’s a lot. Now that I actually have a solid diagnosis, it’s a lot easier, because I have a solid diagnosis, and all of my doctors, more or less, are in the same hospital system, so they can read each other’s records. They can see what their colleagues said. So I encounter that a lot less now. But on the road to diagnosis, a lot of the time, I would say probably 95 percent of the time, I had doctors who would say, “There’s nothing wrong. It’s anxiety. It’s depression.” I had one doctor tell me it was, quote-unquote, “a woman thing.” And that was consistently what I was hearing, again and again: “There’s nothing wrong. It’s in your head. I’m not seeing anything.”

And that, unfortunately, shut me down to the point that when my primary doctor was actually advocating for me to see specialists, I didn’t want to go. I was so burned out and so convinced that nobody was going to find anything and no one was going to help me that I remember actually just sitting in her office and ranting and saying, “Oh, no one’s going to find anything. They’re not going to do anything. They’re not going to help.” And she listened, and she listened very calmly, and she said, “I know you’ve had these experiences, but even if they can’t help you, knowledge is good. Information is good. Give it a chance for me. Would you just go?”

And like I said, she went three for three in getting things diagnosed. But, you know, unfortunately, by that point, I was very cynical and very anxious every time I went into a doctor’s appointment, because I took it by default that they weren’t going to listen.

Kevin Pho: As you know, not every doctor-patient relationship is going to work out. What are some of the red flags, from a patient advocate standpoint, that a relationship isn’t going to work out, and how do you go about ending it and perhaps finding a second opinion or another doctor, in hopes of that relationship working a little bit better?

Denise Reich: I think the biggest thing that I’ve encountered is doctors who will talk over me. I’ll try to explain something to them, and they just will not. They’ll just keep talking. And I’ve seen a few doctors where, literally the moment I’ve walked into the room, they have it set the way they want, and they’re not going to listen to anything I have to tell them. The other red flag for me is when I have my labs, or they have the chart in front of them on the computer, and they’re just scrolling to it very quickly, “Oh, yes, OK, OK,” and they’re not really reading it. And also, if they discount what my other doctors have said. Like I said, they’re all kind of in the same hospital system, so they’re all colleagues, and they have each other’s records. If they’re blowing that off, those three things are a cue for me to step back.

As for finding another doctor, I pretty much work with my primary doctor, and I would say to her, “Who do you like? Who do you want to work with?” And she pointed me in the right direction a lot of the time as to finding good doctors. One of the biggest problems came with insurance, where there were only a couple of specialists on the list, and you had to see them, and they weren’t necessarily the doctors that were best suited for my particular case.

Kevin Pho: We’re talking to Denise Reich. She is a patient advocate, and she wrote the KevinMD article “Patients don’t need quick diagnoses. They need accurate ones.” Denise, one thing that I’m sure that you’ve heard from reading my site and talking to other clinicians is that there’s obviously a tremendous amount of time pressures that clinicians face. We’re all dealing with these really cumbersome electronic medical records, and I’m sure you’ve talked to doctors where they’re focused more on the screens than they are on the patients, and we have to click a lot of checkboxes and ask a lot of questions that are mandated of physicians. Now, from a patient’s standpoint, just what are some tips that you could share with physicians on how to better listen in the midst of all these administrative and time pressures that they’re facing?

Denise Reich: It’s a good question, because I am very aware of, I mean, not from a physician standpoint, but from a patient standpoint, I do know that physicians are very pressed for time, very pressed by insurance companies, and have to schedule a lot of patients. You don’t necessarily have an hour to sit with somebody and go over their entire medical record and comb through everything with a fine-tooth comb.

I would say maybe just trying to really listen to the patients, and of course, that requires some effort on the patient’s part as well, to be able to clearly convey what their symptoms are, what’s been happening, and what tests they’ve already had. So sometimes you don’t have that piece of the puzzle either. But I think maybe looking at what the main symptoms are, what the patient’s already had done, and why they haven’t found anything, those might be good leads.

And like I said, the heart problem that I have is not even one that I anticipated. It’s not something that was on my radar in any way, shape, or form, so I said nothing to my doctor. She just looked at the chart, but it meant that she looked at the chart, because she didn’t just skim it. So I think sometimes paying attention can be the most important key.

Kevin Pho: And my final question: What is your take-home message that you want to leave with the KevinMD audience?

Denise Reich: My take-home message would really be for doctors to understand that the patients who are trying to advocate for themselves are not trying to tell you how to do your job. We’re not trying to be criticizing you. We’re not trying to be your adversaries. We’re trying to help you help us. And if the patient keeps coming back to you, it’s not for the fun of it. It’s because they don’t feel well. It’s because they want and need an answer, and helping them find that answer is really, really important. It might not be immediately apparent, but it doesn’t mean it’s not there.

And we just celebrated Rare Disease Day. “Celebrated” is the wrong word. We just recognized Rare Disease Day on February 28, and the common thread among all the rare diseases that were featured for that awareness campaign: doctors not finding things, patients going for years without diagnosis. It’s not just happening with one illness; it’s happening with a lot of them. And it means you’ve got a lot of patients walking around suffering worse health, suffering more complications and more long-term damage than they would if they had been diagnosed sooner. I’ve got permanent damage to my ears and other organ systems that can’t be repaired, that might have been able to be stopped if I had been diagnosed at 20 instead of 30-something.

So please just listen to your patients. Understand that you might not have the answer immediately, but it doesn’t mean that somebody is not sick.

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

Denise Reich: Thank you so much.

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