The Clinical Excellent Podcast, sponsored by the Bucksbaum Institute for Clinical Excellence is a biweekly podcast hosted by Drs. Adam Cifu and Matthew Sorrentino. The podcast has three formats: discussions between doctors and patients, discussions with authors of research pertinent to improving clinical care and the doctor-patient relationship and discussions with physicians about challenges in the doctor-patient relationship or in the life of a physician.
[00:00:00] Dr. Cifu: On today's episode of The Clinical Excellence Podcast, we have Dr. Stacy Lindau talking about putting people at ease discussing sensitive topics.
[00:00:12] Dr. Lindau: When one is performing a physical exam, especially a gynecologic exam, virtually any words that are said can be misunderstood and they can be misunderstood as sexual innuendo.
[00:00:30] Dr. Cifu: We're back with another episode of The Clinical Excellence Podcast sponsored by the Bucksbaum Institute. On this podcast, we speak to patients and doctors about all aspects of excellence in clinical medicine. I'm Adam Cifu, and today I am joined by Dr. Stacy Lindau. Dr. Lindau is the Catherine Lindsey Dobson Professor of Obstetrics and Gynecology.
Stacy focuses on social and sexual domains of health and medicine and interventions to mitigate the effects of iatrogenic harm on social and sexual functioning. She's the director of the Program in Integrative Sexual Medicine, PRISM, a great acronym, a program that provides care for and studies female sexual function in the context of aging and common illnesses.
Most of Dr. Lindau's patients have sexual function concerns caused by cancer or its treatment. Stacy is also very active in improving the health of our community. She created MAPSCorps and CommunityRX, two long-standing community-engaged efforts that identify and leverage local assets for good health and economic vitality. I can say I've personally experienced the benefits of one of those programs with my own patients. Stacy, thanks so much for joining me today.
[00:01:42] Dr. Lindau: Thanks for having me.
[00:01:43] Dr. Cifu: So, although I hate to ignore a lot of what you do, I want to focus on your clinical work today. Your work in sexual medicine, um, deals with issues that patients are often resistant to seek care for. And so before we talk about your visits with patients, how do you set up and kind of publicize a practice in a way that encourages patients to come and get care that they need and would benefit for, but might not feel comfortable kind of reaching out for?
[00:02:11] Dr. Lindau: Well, it's funny you mentioned the acronym, the name of the program, so Program in Integrative Sexual Medicine, PRISM, but when it's spoken, sometimes it sounds like prison, and that is not an appealing image for people thinking about where to go for help for their sexual function concerns.
[00:02:29] Dr. Cifu: We will not let you leave until you improve.
[00:02:32] Dr. Lindau: That's right, exactly, but you know, I remember it was 15 years ago now, the former chair of the department of OB/GYN was talking with me about research I was doing, studying just the normative behaviors of sexuality and aging. We had published a paper in the New England Journal of Medicine and he and Dr. Diane Yamada, the chief of GY and oncology were asking me, you know, "Have you learned anything that would be useful in helping to better care for our patients who have sexual function concerns?" And I really took interest in that idea, and I am a translationalist, the chair said, "You know, just hang a shingle, and, you know, build it and they will come." And actually hanging a shingle evokes an earlier, simpler time, the way to do that in those days was to give it a name, get some colleagues on board, you know, a gynecologist, I'm a gynecologist, a psychologist, Dr. Shirley Baron was initially involved, physical therapy and agree that we're going to work together to do this thing, and then we had to promote it out. And so in those days, we had real mail.
[00:03:41] Dr. Cifu: Yeah.
[00:03:41] Dr. Lindau: Like a mailing list that went to referring providers.
[00:03:43] Dr. Cifu: Yeah.
[00:03:43] Dr. Lindau: I went around to various departments and talked to our cancer surgeons and radiation oncologists, cancer doctors, I talked to my own department, so we did that community engagement piece and then focused on patients. We added a couple of questions to the intake form.
[00:03:58] Dr. Cifu: Hmm.
[00:03:58] Dr. Lindau: So if you could imagine, even in gynecology on the checklist of symptoms somebody might have when it came to your gynecologic concerns, we didn't ask anything about sexual function concerns.
[00:04:10] Dr. Cifu: Wow.
[00:04:10] Dr. Lindau: And I think, you know, you hear the can of worms metaphor, like, if I open the can of worms, what am I going to do with the worms?
[00:04:17] Dr. Cifu: Yeah. Yeah.
[00:04:18] Dr. Lindau: And even the gynecologists were saying, "Well, we don't want to ask about sexual function 'cause we have nobody here who's going to deal with that. So we added a few questions to the intake form and we found – these were patients 18 to 91 years old, Vanessa Kennedy was a G1 oncology fellow who did this study – 499 patients completed these forms. 52% were sexually active, 52% of those indicated that they were having a sexual problem for several months or more in the last 12 months.
[00:04:47] Dr. Cifu: Wow.
[00:04:48] Dr. Lindau: And only 15% of those people had any documentation in the doctor's note of a sexual function concern, and like 12 of them were referred. So then we went to posters, and you've probably seen them because you know, your family and friends and mine come to get care here.
[00:05:06] Dr. Cifu: Yeah.
[00:05:06] Dr. Lindau: And you see these posters with me and a patient of mine on an easel, old fashioned saying like, "Concerned about your sex life? Call Dr. Lindau." And those posters, believe it or not, a third of our patients come...
[00:05:19] Dr. Cifu: That's amazing.
[00:05:19] Dr. Lindau: ...not because a doctor told them, not because somebody, you know, they got a newsletter, a referral, they saw the poster. So those are some of the strategies we've used. And we've also created a website, womanlab.org.
[00:05:30] Dr. Cifu: Yep.
[00:05:30] Dr. Lindau: Put everything we know about this topic on the website and we have users in every country in the world, tens of thousands, we might have even hit a hundred thousand users.
[00:05:39] Dr. Cifu: That's great.
[00:05:40] Dr. Lindau: Ad people find us that way too.
[00:05:41] Dr. Cifu: So let me ask you two questions. Um, well, one is a question, one is sort of a comment. When you approach providers with, you know, I'm starting this clinic and you know, do you think you could use me, basically, were the providers, did they know, "Oh wow, this is a need that I know exists, that I've been sort of staying away from?"
[00:06:00] Dr. Lindau: You know, thank you, New England Journal of Medicine...
[00:06:02] Dr. Cifu: Yeah.
[00:06:02] Dr. Lindau: ...because when the New England Journal of Medicine publishes the first-ever national study of sexuality and aging and establishes that most people are sexually active, if they're not, they want to be, they have problems they want to talk about with the doctor, the doctors aren't talking to them. So I was able to invite the conversation with like, I'm the first author on this New England Journal of Medicine paper, that helped.
[00:06:20] Dr. Cifu: Yeah. Yeah.
[00:06:21] Dr. Lindau: Um, and you know, to my recollection, people sort of thought, "Yeah, that is an important topic. No, I don't talk about it."
[00:06:29] Dr. Cifu: Right.
[00:06:29] Dr. Lindau: "And the main reason is I don't know what to do if somebody has a problem and I don't have time to deal with these problems."
[00:06:34] Dr. Cifu: Yeah. And then, I think the can of worms metaphor is so great, and I love you talking about it in this way because this is sort of, okay, you know, we're going to open up this can of worms at the same time that we're providing solutions, because I think so often, especially in primary care, what happens is that you know, we get these guidelines that are, you should screen for these 28 different things, often with no way of responding to the ones you've found and I feel like that's often the pushback, right?
[00:07:05] Dr. Lindau: That's a huge ethical issue.
[00:07:07] Dr. Cifu: Yeah.
[00:07:07] Dr. Lindau: The principles, the epidemiologic principles behind screening say that one should not screen if one has no solution or response to the problem.
[00:07:17] Dr. Cifu: Right. Right.
[00:07:18] Dr. Lindau: I mean, that's not screening that's something else, it's selfish. It's gathering data for some other purpose that is not intended to help the individual.
[00:07:25] Dr. Cifu: It's actually a little abusive. It's like, let me tell you about the problem you have and then send you out to deal with it on your own.
[00:07:29] Dr. Lindau: And then we ignore it.
[00:07:30] Dr. Cifu: Right.
[00:07:30] Dr. Lindau: Even worse.
[00:07:31] Dr. Cifu: Right.
[00:07:31] Dr. Lindau: So screening is a huge topic today in my other field, you know, assessing people for their health-related social risks. Are we going to ask about food insecurity and housing? And it's important for us to know these things, but if we are not going to assist people who indicate a problem, that's a real ethical concern.
[00:07:49] Dr. Cifu: Right. And it's interesting, I mean those are some of our hardest conversations I think with patients where, you know, there are times you have to acknowledge that, wow, that's a terrible problem and I care about it, but there's honestly not much I can do about it.
[00:08:04] Dr. Lindau: Yeah.
[00:08:04] Dr. Cifu: And to sort of get you into those conversations when you don't need to be maybe is difficult.
[00:08:10] Dr. Lindau: It's difficult. And so either we shouldn't be asking questions we don't want to know the answer to, or if we do want to know the answer, we need to explain to patients what are we going to do with that information.
[00:08:20] Dr. Cifu: Right. That's a great point.
[00:08:21] Dr. Lindau: Yeah.
[00:08:22] Dr. Cifu: So I'm sure your clinical experience includes patients who need like no encouragement at all to speak frankly, I certainly know those people well but then there are probably patients who, you know, see your poster, come to see you and are still kind of hesitant to either discuss their problems or their goals of therapy. And I think we all sort of come to a place with this, but what are techniques... Sort of over your career, um, have you found that you know, sort of make people feel more comfortable and kind of grow into the role of letting you help them?
[00:08:50] Dr. Lindau: Yes. You know, one thing I have to tell my trainees, it's usually residents, sometimes psychology trainees who come with me to clinic, the kind of communication that happens in PRISM is like Communications 890 or whatever, some super advanced level communications and I've been doing it for a long time, so I've gained a lot of intuition, um, about how to talk to whom, and the approach is not the same for everybody...
[00:09:21] Dr. Cifu: Got it, got it.
[00:09:21] Dr. Lindau: ...of course. The other, I think, very important thing to remind everybody about is, when one is performing a physical exam, especially a gynecologic exam, virtually any words that are said can be misunderstood.
[00:09:34] Dr. Cifu: Yes.
[00:09:35] Dr. Lindau: And they can be misunderstood as sexual innuendo, even if you're not in a sexual function clinic.
So keep conversation to a minimum when we're doing the part of interacting with patients that involves examining them, especially their genitals. I have heard patients report back trauma from offhand comments that clinicians have made while performing physical exams. So now separate from those, there's the regular communication, and you're right, most of the people who've made the decision to come see me are... They're at least ready to talk about it. Many will say, "I've never told anyone this. I've never said these words out loud," but they're ready to talk about it. I had a patient just the other day, we spent the first 15 minutes during the visit and probably a couple of hours with other people before the visit, managing her angst about disclosing her concerns and having them documented.
[00:10:23] Dr. Cifu: Wow.
[00:10:24] Dr. Lindau: What were her concerns? Painful sex, vaginal dryness. Why did she have these concerns? She was being treated with an aromatase inhibitor for breast cancer. Are these rare concerns? No. The vast majority of people taking these medicines have these concerns, but in her mind, she was the only one with these embarrassing problems. Why? Because she doesn't remember anyone ever telling her to expect these problems. So first, a really important strategy I use is normalizing. "You are not alone. I know it doesn't make you feel better to know other people are suffering, but what you're experiencing is a known consequence of your treatment. It's not your fault. It's not in your head." You know, many women come to me having been told by a doctor, by their partner, by their friends, "Just relax, just have a glass of wine," but if you're taking a medication that visibly alters the appearance and definitely alters the physiology of your genitals, you know the problem's not in your head...
[00:11:23] Dr. Cifu: Yeah.
[00:11:23] Dr. Lindau: ...it started in your, in your vagina.
[00:11:25] Dr. Cifu: Yeah, yeah.
[00:11:26] Dr. Lindau: So that's a key technique and giving people control. "What is important to you today? What can you handle today? How does this fit with your cancer care and the other work you have to do to be healthy?"
[00:11:38] Dr. Cifu: That remains a challenging thing for me, those... The patients who are coming to you with the most run of the mill problem from our perspective, where it's like, you know, I don't get through an hour of clinic without dealing with this and just still always reminding myself that this is completely new for this person and it's a one of a kind problem for this person.
[00:12:01] Dr. Lindau: Right.
[00:12:01] Dr. Cifu: And although you know that, you sometimes have to articulate it to yourself in clinic because it's still important after whatever, 25 years, right?
[00:12:09] Dr. Lindau: You know, we learn this in obstetrics delivering babies.
[00:12:12] Dr. Cifu: Yeah, yeah.
[00:12:13] Dr. Lindau: For most people, they have one or two, they will never forget that moment.
[00:12:18] Dr. Cifu: Yeah, yeah.
[00:12:18] Dr. Lindau: And as an OB/GYN resident, you might deliver 20 in a shift.
[00:12:21] Dr. Cifu: Right, right, right.
[00:12:22] Dr. Lindau: And you know, you have to remember every time, this is a life moment for this person and her family that they're never going to forget.
[00:12:30] Dr. Cifu: Yeah.
[00:12:30] Dr. Lindau: And so that's a happy, you know, example but I think I bring that to my practice in gynecology.
[00:12:38] Dr. Cifu: Hey, to build on one thing you said, so many of the women you care for are having issues with sexual function, you know, less because of their underlying disease and more because of kind of what we've done to them, right?
[00:12:48] Dr. Lindau: Mm-hmm. Yeah.
[00:12:49] Dr. Cifu: And it's... We've done it to them for a good reason, aromatase inhibitors and so forth but given that we as doctors have, to some extent, like caused the problem, does that make your counseling more complicated or does that make it easy because you're sort of involved in it already? We, as physicians are involved in it.
[00:13:06] Dr. Lindau: Right. I use, um, a technique with my patient that involves evoking their theory.
[00:13:13] Dr. Cifu: Okay.
[00:13:14] Dr. Lindau: And so commonly people say, "I'm having pain. I don't have any interest in sex. I don't care if, you know, I don't care if I ever have sex again," but obviously, they're there to see me so they care cognitively, but they don't have a physiologic drive. And I say, "I bet you've thought about this for a while. What do you think are the factors contributing to your pain? Why do you think your libido might be low?" And sometimes they look at me as if, "Aren't you the doctor? You know, I came here for you to tell me," but I say, "You're living in your body and it's really important for me to hear how you're thinking about what's going on."
And ninety-nine times out of a hundred, people's theory, their mechanistic understanding of what's happened to them is perfectly aligned with my understanding.
[00:14:03] Dr. Cifu: Right, right.
[00:14:04] Dr. Lindau: Um, sometimes it surfaces mechanisms that I might not have even considered. I had a patient who had a bone marrow transplant and she shared that ever since her bone marrow transplant, she had had a change in her sense of smell.
[00:14:18] Dr. Cifu: Hmm.
[00:14:19] Dr. Lindau: And she was extraordinarily distressed by the fact that her husband no longer not only didn't smell good to her his scent was repulsive to her.
[00:14:29] Dr. Cifu: Oh, wow.
[00:14:30] Dr. Lindau: Now that's not something I hear every day, so I didn't know to ask.
[00:14:34] Dr. Cifu: Yeah.
[00:14:35] Dr. Lindau: Um, those kinds of observations, that patient... Well, that's a perfect explanation for why you might not experience libido.
[00:14:42] Dr. Cifu: Right.
[00:14:42] Dr. Lindau: What do we do about that? That's a harder...
[00:14:44] Dr. Cifu: Yeah, yeah, yeah.
[00:14:44] Dr. Lindau: ...problem but inviting patients to give you their theory and explain the mechanisms, I think is extremely a useful strategy.
[00:14:54] Dr. Cifu: And you learn so much from that. You know, you either learn things that you can use in the future, or you learn things about that individual patient. You know, for me it's often, you know, "What are you worried about with this headache,?" You know? And everybody's always worried they have a brain tumor, even if it's not something I was thinking about...
[00:15:11] Dr. Lindau: Right.
[00:15:12] Dr. Cifu: ...and allowing you to kind of directly address what the concern is that you might be missing is spectacular.
[00:15:19] Dr. Lindau: And sometimes, more often than not, my patients will identify behaviors or unaddressed mood issues or relational issues that they feel are contributing. And so then it's not me saying, "I think you have a relationship problem." I say, "I hear you saying that your husband isn't treating you kindly. Does it make sense to you why that might affect your interest in sex with him?"
[00:15:45] Dr. Cifu: Right. Right.
[00:15:46] Dr. Lindau: Yeah.
[00:15:47] Dr. Cifu: This might be a bad question for you because you're like so deep in this, but do you think that, you know, sexual health in general, men's, women's, both, you know, is understudied, do we do a good job with that? Is our problem more on the kind of clinical implementation of this or more on the research side? What do you think or what do you dream about kind of going forward?
[00:16:12] Dr. Lindau: Well, what I dream about is maybe the, you know, a different topic, but, um, you know, I would say thank you, Bob Dole and Pfizer and Sildenafil known as Viagra in the United States, um, because you know, the introduction of highly effective, widely accessible medications to treat erectile dysfunction in men opened the floodgates for attention to sexual function as an important health concern.
Now, it has been heavily focused on men, but this... I can point to that evidence that men demand help for their sexual function, that there are treatments that are effective, it's good for the economy, you know, to say then, isn't it just that some equivalent resources ought to be spent to address female sexual function concerns. We don't have a Bob Dole. You know, we don't... If anyone, maybe younger people don't remember, Senator Dole was featured in a Viagra commercial at half-time of a Super Bowl, you know, this is like the introduction of Viagra. We haven't seen the equivalent. There are new medicines, you know, that the FDA's approved for treatment of female sexual dysfunction, specifically low desire. They're not highly effective but we certainly haven't seen anyone promoting those at half-time of the, you know, Oscars or something. Um, we could do better and where I'm especially concerned is where we are subjecting women or agreeing with women, you asked this question, women agree that the aromatase inhibitors, the medicine they're going to take to treat their breast cancer, prevent breast cancer but they need to be informed about the side effects. And, you know, loss of sexual function is not a rare occurrence on these medications. It's the norm. So I think we're doing better in raising awareness and helping women make better-informed decisions in their cancer and other healthcare about what treatments are going to use vis-a-vis their sexual function but the vast majority of people I see are suffering consequences of problems that could have been prevented if someone had just talked to them about it.
[00:18:23] Dr. Cifu: Right, right.
[00:18:23] Dr. Lindau: You know, so we're a long way from success there.
[00:18:27] Dr. Cifu: It's interesting, and I wonder if you agree with this, you know, certainly I agree that, boy, you know, the marketing of this to men seems much, much, much greater than it is to women.
[00:18:39] Dr. Lindau: Mm-hmm.
[00:18:40] Dr. Cifu: I certainly deal, you know, as an old guy in clinic with a lot of old men in clinic, I deal with a lot of the consequences of the sort of, you know, snake oil salesman...
[00:18:50] Dr. Lindau: Mm-hmm.
[00:18:51] Dr. Cifu: ...selling people, and the number of people I have to sort of pull back from what they've bought and they're using, which may be an economic driver, but not terribly good for my patient's health. Do you see that with women as well?
[00:19:03] Dr. Lindau: Yeah.
[00:19:04] Dr. Cifu: Yeah.
[00:19:05] Dr. Lindau: You know, one therapy I see, there's somebody out in the suburbs who's implanting testosterone pellets...
[00:19:11] Dr. Cifu: Oh god.
[00:19:12] Dr. Lindau: ...in women with cancer.
[00:19:13] Dr. Cifu: Yeah.
[00:19:14] Dr. Lindau: In women with hormone-sensitive cancers and are they effective? Well, I will tell you, the women I've seen who come to me after having pellets inserted, by the way, there's no FDA approval for this procedure, um, and claim their energy is better than it's been in 20 years, their muscle mass has improved, their sex drive is great. You know, could there be cause and effect? There could but, um, yeah, people suffering, especially suffering with shame and in silence will attempt to self-treat. And so they go to Google, they go to online support groups, they hear what other people are saying. People are trying all kinds of cannabis-related products, and is it possible through this self-experimentation, we start to identify potential solutions that are worthy of science. Yes. And is there risk? Yes. You know, and my patients with cancer are pretty cautious typically about what they're putting in their body...
[00:20:15] Dr. Cifu: Right.
[00:20:15] Dr. Lindau: ...and it's amazing to me sometimes what risks they're willing to take to address this problem, um, to avoid medical care for the problem, and because they believe they're the only one with the problem since nobody ever talked about it.
[00:20:28] Dr. Cifu: Right. Well, thanks so much for joining us for this episode of The Clinical Excellence Podcast. We are sponsored by the Bucksbaum Institute for Clinical Excellence at the University of Chicago. Please feel free to reach out to us with your thoughts and ideas on the Bucksbaum Institute Twitter page. The music for The Clinical Excellence Podcast is courtesy of Dr. Maylyn Martinez.