“Oh no, it’s a doctor hopper. You know who I’m talking about: the patients with twenty previous doctors documented in their chart. The ones who took years to be diagnosed. The ones who still have not been diagnosed, but insist something is wrong. They’re just jumping around until they get their way, you seethe.

Really?

Every doctor’s appointment is a commitment of time and money for a patient. I think I speak for a lot of us when I say that we’d greatly prefer it if things went right the first time. Unfortunately, that’s not always the case. If one of your patients has hopped, instead of immediately assuming they’re a problem, consider this: they’re trying to find the help that will allow them to stop hopping.”

Denise Reich is a patient advocate.

She shares her story and discusses her KevinMD article, “How about those doctor hoppers?”

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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. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today we welcome back on the show Denise Reich. She wrote the KevinMD article “How about those doctor hoppers?” Denise, welcome back to the show.

Denise Reich: Hi, thank you so much for having me back again.

Kevin Pho: Now, for those of you who get a chance to listen to our first few episodes together, just briefly share your story and journey to where we are today.

Denise Reich: Sure. I am a patient who is diagnosed with a form of primary immune deficiency and several heart conditions. One interesting aspect of my story is that even though primary immune deficiency is genetic, I was not diagnosed until my 30s, despite having symptoms from early childhood. So that’s something that I’d like to try to advocate on, because more awareness hopefully will save the next group of patients coming up from waiting decades to be diagnosed. So I try to talk about these issues where and when I can.

Kevin Pho: I think we were talking offline about how important it is to have patient voices, especially on this podcast and on KevinMD, because as physicians, as clinicians, oftentimes we don’t know what it’s like to be a patient in our health care system. Thank you so much for sharing that perspective with everyone. So let’s talk about your latest article on KevinMD. It’s titled “How about those doctor hoppers?” Now, for those who don’t get a chance to read that article, can you just walk my audience through it and share the story of why you decided to write it?

Denise Reich: Sure. The article addresses something that is, frankly, I think, almost universally seen as a negative in the health care system, which is that if you look at a patient’s chart and see that a patient has seen a lot of doctors, it is taken as a negative. There are criticisms I’ve read from both doctors and, frankly, other patients saying, “Oh, well, you just shopped for a doctor until they gave you the response that you wanted, or until they gave you the diagnosis you wanted.” It’s seen as less genuine.

And so I wanted to write this article to point out that there are many reasons why a patient may see a lot of doctors that, number one, are not their fault and, number two, are completely justifiable. It’s not necessarily a bad thing if you look at a patient’s record and see that they’ve seen 10 doctors in the last year or have a history of seeing a lot of different doctors. It’s certainly something to ask about, but it’s not something where you should immediately doubt a patient or immediately think less of them.

Kevin Pho: Yeah, so let’s go into those reasons. What are some common reasons patients have to switch doctors?

Denise Reich: Well, the first one goes back to my story about how I had my first infection at the age of six weeks and was not diagnosed with primary immune deficiency until I was in my 30s. My pediatrician was a wonderful doctor. He didn’t know to look for primary immune deficiency. If he had, I’m sure he would have. And that is the case for a lot of conditions that are less common: multiple sclerosis, lupus, various types of Ehlers-Danlos, and that’s a very controversial one right now, I know. But there are a lot of conditions that are not spotted immediately.

And the foundations that work with these diseases, I don’t think it’s a coincidence that a lot of them offer CME courses and awareness that is not geared toward patients but is geared toward doctors, to try to spot these conditions. A lot of these foundations also have directories of doctors who are knowledgeable, that they’ve established a relationship with. And so I think it’s absolutely plausible that a person with a less common condition could see a number of doctors and still be completely in the dark, because nobody knows what to look for.

And again, that’s not necessarily a fault in the doctors either. I pointed out in my article that the rare disease registry in the U.S. lists 7,000 rare conditions, and if you look at primary immune deficiency, there are 450 established types, and that number goes up every year. You can’t remember all of this, and I think that’s the reason why some of these organizations are trying so hard to get doctors to recognize some of the symptoms, because you’re not going to know them all.

And so, unfortunately, that does mean that a patient may have to travel, may have to very actively seek out a doctor who is knowledgeable in what tests to order, frankly, how to interpret the tests, and then how to treat it. Because that’s the other thing: Even if your primary doctor can order these tests, you might not know how to treat the rare condition that you have. So that’s not a patient’s fault. It is what it is when there are 7,000 diseases out there that are not particularly common.

Kevin Pho: Sure. You mentioned insurance. In fact, you gave two points on insurance. Tell me how insurance changes can also affect who you see.

Denise Reich: Insurance, unfortunately, as a physician and as a patient, is aggravating on a lot of levels. Doctors can leave the network. I’ve had numerous doctors who have sent letters saying that they’re leaving the hospital system I’m affiliated with or leaving my insurance, and you can’t necessarily follow them, especially if you have a lot of other providers that you need to see. On the other hand, a lot of insurance is tied to jobs. It’s tied to geographic locations. If you move, if you get a new job, you may be faced with re-establishing your doctor network, because you can’t keep the ones that you previously had. So that’s the first point: Jobs change, insurance changes, and somebody gets left by the wayside sometimes.

The other one is that a lot of HMOs in particular will sometimes have a version of step therapy for the doctors, where in order to see the specialist who might be knowledgeable about your condition, you have to see all of the others who are actually in network before they will allow that to happen, and they don’t care how ridiculous that is. In my case, I had two or three different doctors who wanted me to see a clinical geneticist. They thought that was very important. The one my insurance company had in network in my area happened to be an OB/GYN who dealt with high-risk pregnancies. She wasn’t there to diagnose adults or treat adults, but the insurance company insisted that I had to go and see this doctor before they would even contemplate the idea of an out-of-network referral.

So I had to waste an entire afternoon going to this OB/GYN’s office, sitting in an office full of pregnant ladies, and basically having to say as soon as I walked in, “Look, I’m not here for what you offer. I am here because they made me come.” So it is unfortunate, but it is, unfortunately, the only way to get to the referral that you actually need sometimes. So patients have to do that dance. And I think that it’s something that doctors and patients both should be fighting. It wastes everyone’s time. Somebody who needed that appointment didn’t get it because I had to go in and do that dance. But it is how the system works right now.

Kevin Pho: And sometimes it may not even be the doctor himself or herself. It could be the office staff as well that’s not compatible.

Denise Reich: Right. If the doctor’s the greatest doctor in the world, but their office staff is really rude or really competitive or doesn’t answer the phone or doesn’t write the referrals, unfortunately, they can obstruct care too much. And I’ve had that situation, where I had one doctor that I was referred to, and it took a month just to make the appointment, because the staff didn’t pick up the phone, didn’t respond to voicemails, and didn’t respond to messages sent through the portal. And then after the appointment, they didn’t want to do the referrals and the prior authorizations for the tests that the doctor had ordered. After fighting with them for about a month or so, I gave up, because I can’t make them do it, and I can’t pay for the tests out of pocket.

Yes, I’m sure prior authorizations are just as horrible to deal with on the doctor’s end and the administrative end as they are for us as patients, but there’s a way to get care. I mean, there’s nothing anyone can do about it at this point. They have to be done, unfortunately.

Kevin Pho: How difficult is it for you to switch medical practices? Just take us through the process and how much work it is, from the patient perspective, when they need to switch doctors.

Denise Reich: I think it depends a lot on what insurance you have. For a long time, I had an HMO, so anytime I wanted to switch to another doctor or needed to switch to another doctor, even if it was something like the doctor had left the insurance, I had to go back to my primary doctor and get a whole new authorization and a whole new referral. And that could take whatever amount of time it was to get in to see my primary doctor, the amount of time her office spent to do the referral, and then, with the other doctors, however many months I had to wait to get an appointment with them.

And one of the HMOs that I had was very bad about letting you specify who you wanted to see. I went through an instance where they were referring me to doctors who weren’t even practicing anymore or in the insurance, even though they were still in the directory, and then they wanted a whole other referral to correct that. So there was a lot of red tape, and it was very aggravating just from the administrative standpoint.

From the perspective of actually locating a doctor who might be a better match, I tend to personally ask the doctors that I have. I will ask them straight out, “Is there anybody that you like? Is there anybody that you work with a lot? Who would you recommend?” And I tend to go with those recommendations almost all of the time, because I trust them, and I want them to work with colleagues that they respect. So if they have a recommendation for me, I’ll go with that recommendation. If not, I do look at reviews. I do look at Zocdoc. I do look at Healthgrades. I also look at whether there are any doctors who are recommended by the foundations for the conditions I have, if a doctor’s on their list.

And when I say look at reviews, I mean I’m very critical about what I look at there. If they say, “Well, the walls were blue, I don’t like the doctor,” I’m not going to take that seriously. But there are some times you read reviews and you see the same complaints coming up again and again, or the same positive things again and again. If I see five reviews where they’ve said, “This doctor really listens and is doing a great job at treating me,” I’m going to give him a call.

But luckily, knock on wood, for the last couple of years, since I’ve had good PPO insurance, most of the reasons I’ve needed to change have just been because the doctors have left. And being at a big university system has actually made it a little easier, because then I can just say, “Hey, who’s your colleague? Who else is in this clinic that you like best?” And that makes it very seamless, because I’m not going to a new practice. I’m just seeing one of their peers.

Kevin Pho: We’re talking to Denise Reich. She’s a patient advocate, and she wrote the KevinMD article “How about those doctor hoppers?” Denise, what kind of messages do you have for the clinicians who may be listening to this podcast, if a patient has a history of seeing multiple physicians?

Denise Reich: I would say just think about how rough it has been for them on their end. They’re not just coming to you again and again because they want. They don’t want a diagnosis; they want answers. They want relief, and they’re not getting it. Nobody keeps coming back to the doctor’s office for fun. You keep coming back because you’ve got symptoms that aren’t being treated and you’re not feeling good.

And so I hope that they will look at it that way and realize that nobody’s trying to make anyone else’s life difficult. People are just trying to get care, and they’re coming to you because they want care and they’re hoping that you can give it to them, and you’re hoping that you might be the doctor who has the answer for them. And there are patients like me who spend literal decades not being diagnosed with something they legitimately have.

One of the things I did say in the article that I’d like to touch upon just very briefly is that this tends to get talked about in terms of diseases and conditions that have more subjective criteria for diagnosis. Primary immune deficiency, it’s blood tests, it’s vaccine titers. It either comes up on the results or it doesn’t. It’s pretty objective in terms of the diagnosis. You have to have somebody who knows what they’re looking at in the test, but it’s a blood test. It’s not subjective. And we still come up with these issues where people don’t get diagnosed for decades.

Some of the heart conditions I have, I have regurgitation in three different valves, and that shows up on an echo. It’s not conjecture. It’s not somebody making an educated guess. It’s something that was literally on the screen of the echo. But if you don’t know what to ask for, then you’re not going to find it.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Denise Reich: For clinicians, if you have a patient and you look at their chart and you see that they’ve seen a lot of doctors, please don’t hold that against them. Ask them why if you really need to, but don’t hold it against them. Realize that with insurance, with red tape, with people moving, and with less common conditions, this is something that happens. It doesn’t mean that this is a patient who is shopping. It doesn’t mean that’s a patient who’s difficult or has been discharged from doctors a bunch of times. Look at their chart. Look at their records. Look at what those other doctors have written. There might be things there that make you understand why that patient has needed to change.

And understand that with rare conditions, in the rare disease community, we always love to tell doctors, “Think zebra,” because of that wonderful saying from medical school: “If you hear hoofbeats, think of horses, not zebras.” Zebras are still out there. They’re not saying the zebras don’t exist. Or they might be in the shadows, and you can’t see them because you’re seeing all the horses come by, but they are still there. And you might have one of those patients who has something weird or something that is not as common, and they might need to be referred to another specialist. They might need to see two or three doctors or 10 doctors before they get an answer, but it doesn’t mean that what they’re dealing with is not real.

And the other take-home I would like to say, and it’s one that I think bruises people’s egos a tiny bit, is that as a doctor, you could be wrong. And I say this very nicely, because I’ve had two different things in my life where, if I had not gone for a second opinion, it could have killed me. One specifically: I was bitten by a bat, and the first doctor I saw did not believe I needed rabies shots, even though I had actually been bitten. Luckily, a friend of mine who was in veterinary medicine refused to let it go and basically spent an entire morning nagging me nonstop until I agreed to call the Department of Health. And of course, the Department of Health brought me in and got me set up with post-exposure prophylaxis. And they did ask for that doctor’s name, because they wanted to send her a letter and let her know why she did not make the right call. That was something where there was no margin of error. If I had not gone for those shots, and there are rabid bats in my area, it could have been fatal.

And the other example I would give with that is women’s heart disease. There are specific national campaigns talking about how women who go to the emergency room with heart attacks are turned away more frequently than men, because doctors don’t recognize that their symptoms may be different. That actually happened to someone in my family. They went in, and they had symptoms of a heart attack, several risk factors, and a family history of heart disease, and the doctor tried to tell them it was the flu. Luckily, she was with other family members, and they took her to a second hospital. And of course, they did the cardiac workup. It absolutely was a heart attack, and she needed about three stents.

So sometimes you are wrong, and it’s OK to be wrong, but just know that it can happen. And if a patient seeks a second opinion for something like that, they’re trying to save their own life. They’re trying to make sure they don’t get injured or die because something was missed. And so I think that’s the last thing I would say in terms of looking at a patient who has a lot of things, or a lot of doctors, on their record. They’re trying to make sure something wasn’t missed. They’re trying to make sure that there’s a red flag waving in the background that nobody’s been able to spot. So they’re trying to look out for themselves, and that’s the reason we seek medical care: to try to heal ourselves and to try to work with somebody who can treat us for whatever is going on.

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

Denise Reich: Thank you. Thank you for having me. Have a good day.