Ep. 21 | Patient Advocacy and the Importance of the Patient Experience

Fertility Health PodcastHow can infertility patients be well-informed, empowered, and get the right guidance throughout their family-building journey? 

From their first visit and throughout the road to fertility, it can be overwhelming, frustrating, and fearful for infertility patients as they are often overloaded with new information and processes they are expected to understand and deal with immediately.

In this episode, Linda Scruggs, BSN, R.N., registered nurse, writer, blogger, and content creator, joins host Mark P. Trolice, M.D., to discuss patient needs and how healthcare providers can enhance the patient experience, improve communication, and build trust with their patients starting with the first visit to the doctor’s office. 

Tune in to discover:

  • Why the initial process can be so overwhelming for new infertility patients
  • Ways that fertility clinics can enhance the patient experience and psychologically empower their patients
  • The critical role of transparency in building the patient-clinician relationship
  • How healthcare providers can give their patients a more active role in decision-making
  • What patients can do to prepare for their first visit to have a productive and great first consultation

About Linda Scruggs, BSN, R.N.Linda Scruggs

Linda Scruggs, BSN, R.N., has specialized for almost 15 years in reproductive medicine and women’s health. Sitting at the intersection of digital media and clinical services, Linda has reshaped patient experience and education at one of the top fertility centers in the country.

She is all about empowering women throughout their family-building journey. A member of the Association for Healthcare Social Media, Linda can be found on all social media platforms as @UnboxedMom.

About Mark P. Trolice, M.D.

Mark P. Trolice, M.D., FACOG, FACS, FACE is Director of Fertility CARE: The IVF Center in Winter Park, Florida and Associate Professor of Obstetrics & Gynecology (OB/GYN) at the University of Central Florida College of Medicine in Orlando responsible for the medical education of OB/GYN residents and medical students as well as Medical Endocrinology fellows. He is past President of the Florida Society of Reproductive Endocrinology & Infertility (REI) and past Division Director of REI at Winnie Palmer Hospital, part of Orlando Health.

He is double Board-certified in REI and OB/GYN, maintains annual recertification, and has been awarded the American Medical Association’s “Physicians’ Recognition Award” annually. He holds the unique distinction of being a Fellow in all three American Colleges of OB/GYN, of Surgeons, and of Endocrinology. His colleagues select him as Top Doctor in America® annually, one among the top 5% of doctors in the U.S. In 2018, he was awarded the “Social Responsibility Award” by the National Polycystic Ovary Syndrome Association. For ten years his foundation, Fertile Dreams, organized seminars to increase fertility awareness and granted national scholarships for those unable to afford in vitro fertilization (IVF) treatment.

Dr. Trolice serves on committees for the American Society for Reproductive Medicine and the Society for Assisted Reproductive Technology as well as the editorial advisory board of Ob.Gyn.News. He has conducted scientific studies with resultant numerous publications and been appointed a reviewer in many leading medical journals and textbooks. He has lectured at numerous physician and patient seminars around the country. In addition, he is interviewed regularly on TV news/talk shows, radio, podcasts, print/online magazines and newspapers on reproductive health topics. His current book is on the Infertility journey to be published by Harvard Common Press in mid-2019.

Transcription Notes

Speaker 1: Thanks for tuning in to the Fertility Health Podcast, hosted by renowned fertility specialist, Mark Trolice, MD. Each episode features first-hand advice and potential treatment news, tips, and strategies listeners can use on their fertility journey. And now, here’s your host, Dr. Trolice.

Mark Trolice: Hi, everyone. Welcome to the Fertility Health Podcast. I’m your host, Dr. Mark Trolice. Joining me today to discuss infertility and relationship issues is a dear friend, Dr. Bill Petok. Bill is a doctor at the university … or received as doctor, pardon me, at the University of Maryland. Post-doctoral training in Family Therapy Institute. He’s practicing in Baltimore and Maryland, Clinical Associate Professor of Obstetrics and Gynecology at the Sidney Kimmel Medical College of Thomas Jefferson University in Philadelphia. He’s been involved in two films with training therapists, and he’s past chair of the Mental Health Profession Group of the American Society for Reproductive Medicine.

I brought bill on to talk about something that’s very, very important for all of you who are suffering through the challenge of infertility. I think, often it’s neglected in our specialty. I know physicians in their times of trying to take care of as many patients as they could, they sometimes neglect the psychological impact. Fertility is a physical, emotional, and financial investment. But the emotion component, as I said, doesn’t always get the attention that it deserves. I have a reproductive health psychologist with my practice since the beginning. I feel so much of a strong need for this. So I wanted to bring Bill on to talk about how relationship issues come about and what we can do to maintain a healthy relationship while dealing with such a significant burden like infertility.
Bill, welcome to the Fertility Health Podcast.

Dr. Bill Petok: Thanks. I’m really glad to be here, Mark. I appreciate the invite.

Mark Trolice: Oh, my pleasure. Thank you. So Bill, I wanted to talk about, initially, what you see, in your years of experience, what you see as the different responses. Now, I’m talking about a heterosexual couple, but certainly we have LGBT patients. But let’s take a heterosexual couple initially. Is there a different response that you see, of fertility, when they go to see an infertility specialist or they’re having difficulty? The man responding differently than woman. How would you describe the typical responses?

Dr. Bill Petok: Well, I think it depends on where the infertility lies, Mark. If it’s a female factor, if it’s a problem in the way the woman’s ovulating or ability to carry, then I think you’re going to see one kind of reaction. If it’s a male factor, a guy has problems with either obstructed sperm delivery or he has problems with producing sperm, then I think there’s a different kind of reaction you’re going to get there. So you’ve got to start there to start to thinking about it.
Now, if you’re talking about a real tradition kind of setup where it’s a woman’s got a problem in some way and she’s married, this is going to affect her personally. So she’s going to feel the loss and the, perhaps, shame and guilt in a much stronger way.

Mark Trolice: Yeah. The worst words I hear from a woman is, “I feel like a failure.” That cuts so deep to the devastation of this diagnosis and this challenge, because they feel so much less of a woman. They feel broken, and they’re not part of their friends. They can’t share with their girlfriends’ conversations. But what I see as a difference between the two, Bill … And I’m interested to hear your experience. Women are almost begging for an answer. And in some way, hoping that it’s something that we can identify in them to fix. Whereas if it’s the man, there is no worse information we could ever provide. They become almost paralyzed in either guilt or frustration or even anger, if you will. Do you see that, too?

Dr. Bill Petok: I think you’re very right about that for a number of reasons. First of all, what defines a woman’s femininity more than becoming a mother? It’s a process which involves her physically. She’s carrying a child for nine months. Most of us figure that our life is going to proceed in a very normal way. We’re going to go to school. We’re going to figure out what we going to do with our lives to earn a living. We’re going to meet someone. We’re going to fall in love. We’re going to get married. We’re going to have kids. And when that last check doesn’t happen, that’s really distressing, and especially if you’ve dreamed of being a mother and now you have roadblocks thrown in your face. It’s frustrating. It’s a failure to be that person that you wanted to be. And, women are so good at talking about how they feel compared to men. You get a situation where a woman is very able to express that and guy doesn’t have a vocabulary or feel comfortable doing it.

Mark Trolice: Yeah, I know. It’s definitely different reactions, both. But it is heartwarming to see them when they come together, which brings me to the point of … What are danger signs? What are things that you say, “Hey, we’re going down a slippery slope here, and we have to be concerned.” One of them, of course, is the blame game. But when couples, and hopefully couples are seeing you, what is a red flag to you to say, “Hey, this is a little bit more of a concern that we have to be careful about how we’re going here”?

Dr. Bill Petok: Well, I think, as you pointed out, if somebody’s blaming somebody else for the situation, that’s going to be non-productive. Nothing’s going to happen as a result of that. When there’s a lot of disagreement about what to do, when a physician prescribes a course of treatment and says, “These are the things I think would be best for you to do,” and there’s a lot of arguing and sniping about which way to go. Or indecisiveness, somebody’s holding things up. You watch couples. If there’s sniping in the session, that’s really problematic. That’s a red flag for me right away.

Mark Trolice: Right, right. How much do you see of financial concerns causing the discrepancy and disparity of couples?

Dr. Bill Petok: That’s a great question. I think, for couples have unlimited budgets, the cost of fertility treatments can be just overpowering. And, if they live in a state that doesn’t have mandated insurance, or they have limited or no insurance coverage, where’s the money going to come from? Because typically, usually people have other things in their life that have cost associated with it. They’ve got cars. They’ve got homes. They’ve got clothing. They’ve got food. All of those things. And now, you’re faced with this financial burden. People typically do have different ideas about how to spend money. Usually, one person is more conservative than the other.

Mark Trolice: Yeah. Yeah. I tell my male patients when they come in, heterosexual couples. When they’re saying, “Wait a minute. How much is thing going to cost?” And so on and so forth. And the woman is just go, go, go a lot of times. I jokingly say, “A happy life is a happy wife.” I went through 10 years of infertility with my wife. I share with my patients I didn’t have a lot of input. This was extremely important to my wife. To me, as well. I mean, I was devastated over this, but I don’t … Biologically, of course, the parental investment is different.
I often see that the wife comes here holding back at home, and sometimes it’s the first time that the husband sees her really break down and really showing the impact this is having on her life. She tried to put up a good face, if you will, for her husband and not wanting to stress him. I ask, invariably, every single couple. After we do the medical history, I say, “Okay. Now, tell me. How are you really doing?” And that’s when the floodgates open and they’re crying. It’s almost not just cathartic but therapeutic in the sense that the man may not have known the impact this was having on them. Do you see that?

Dr. Bill Petok: Sure. Because sometimes what happens is they’re both trying to protect each other, so they’re not going to let each other know just how bad they feel. I think the challenge is greater for men, because we’re brought up to believe that we are supposed to be the strong ones. We have to keep it together all the time. I see guys who are just as devastated about their wife’s fertility problems as their wives are, but their job is to keep it together. You can’t let on that you’re sad, because that’s a sign of weakness and you’ve been brought up to be strong. And on the other side, she thinks you’re being cold and unfeeling and uncaring. That’s really not the case most of the time.

Mark Trolice: No.

Dr. Bill Petok: They’re protecting each other. We see that with regularity.

Mark Trolice: Do you see or have you come across any numbers of the percentages of divorce from infertility patients? I don’t remember coming across that.

Dr. Bill Petok: It used to be in the psychology literature and the mental health literature that this was a red flag because this could blow up marriages. I’ve been doing this since 1985, so we’re talking 30 plus years. In that time, I can think of one couple who divorced. Now it may be I’ve been very lucky with the folks that I’ve seen, but I’m only seeing them for the mental health component. So I’m not seeing it, the medical stuff.

Mark Trolice: And also, it’s a little biased, because they are coming to see you, which means that there is a little bit of a step advantage that they’re recognizing that they need to see somebody, which is important for all our listeners. It’s not a sign of weakness to see a counselor. It’s really a way to cope with what you’re going through.

Dr. Bill Petok: In fact, I’d say it’s a sign of strength to say, “This is tough, and I want to get some assistance with it. I want to get some guidance on ways to approach it.”

Mark Trolice: [crosstalk].

Dr. Bill Petok: I think, the other thing is … I’m thinking about this one couple, and their marriage was in trouble before they came to see me. I don’t think it had anything to do with the fertility issue. It had a lot to do with their own style.

Mark Trolice: I understand.

Dr. Bill Petok: Yeah. I think the other thing that does happen frequently is … This is a family crisis. And frequently, families pull together in crises. So there is a certain group of folks who get closer as a result of this, because they’re tackling it together. It can be an opportunity to strengthen the marriage.

Mark Trolice: Do you see the challenges? We were talking about heterosexual couples. Do you see the same type of challenges in the LGBTQ population in terms of some disconnect among the partners and how they work through their issues?

Dr. Bill Petok: My experience has been very different, because most of the LGBT … I haven’t seen a whole lot. One Q just recently. But most of the LGB folks that I see are really exciting about building a family. They’re using a donor, or they’re using a donor and gestational carrier in the case of gay couples. And they’re really excited. This is usually not a case of someone having a reproductive system which is failing. It’s usually a case of somebody not having all the parts that they need, a couple not having all the parts they need. So it’s a very different sort of a feeling when these folks walk in the room. So yes, you could have, obviously, a fertility issue in a same sex couple.

Mark Trolice: Yeah, I see. But it’s obviously really for lack of a sperm or egg. Let’s put this in the direction now. We’ve talked about some challenging parts to this, so let’s talk about some therapeutic parts. What’s the advice you would give a couple when they start saying that sex is becoming work?

Dr. Bill Petok: Well, I’d say, first of all, that’s a great question, because you hear that an awful lot. First of all, you’re only fertile for so many days of the month. The way humans are created, it’s possible to have sex 30 days out of a 30-day month. I like to work with folks on not being so focused on there’s only this narrow window. If you’re not having sex for reproductive purposes, you can have sex for building intimacy, having fun. Those things don’t need to go away. They can still remain a very healthy part of a couple’s sexual intimacy.

Mark Trolice: So how would you approach a couple that had … that you would feel is the way that should be a healthy attitude toward their infertility? It may sound like an oxymoron, if you will, because this is really a life crisis, as you eloquently described earlier. But what would you tell a couple is a healthy approach to their infertility journey?

Dr. Bill Petok: Well, I think, first of all, a healthy approach is working with a competent professional who understands them, who is able to lay out, “Here are the choices that you have. These are our best options. We’re going to tackle this.” For guys, it’s, “There’s a problem to be solved.” The hard part for most guys is, “Here’s a problem to be solved, and I just don’t have the tools. I am reliant on somebody else.” I think that’s hard for women as well, but more so for guys.
But we’re going to get the best help we can. We’re going to follow directions closely. We’re going to learn about this as we can. And we try to be as realistic as possible. If you read the newspapers, you get confused into thinking that everybody who goes to a reproductive specialist goes home with a baby. Those are all the stars in the magazines who have their miracle baby. But not everybody is like that, so there has to be a dose of reality there, too.

Mark Trolice: Well, I would take it one step further. That if you have Facebook or Instagram or what have you, is that every woman posts that they … Well, not every. But of course, they get pregnant the month they want. It’s the absolute, “I was trying for a month.” It’s obviously an overinflation. I try to put it in perspective for my patients, as well. You’re not defined by your fertility.
I don’t want to disrespect the desire. It’s an inheritable, if you will, and in some ways, acquired impact on your reproductive capability. It’s not something that you accomplish willingly, essentially. If there are some things that are a problem, there are things that are a problem. Now, some things could be lifestyle and behavioral changed. What I’m trying to say is that I think, particularly a woman, their existence in clearly defined many times by when they wanted to have a child and when they learn that they were having difficulty. But I just try to encourage them to not make this ability to conceive naturally the end-all be-all of their being.

Dr. Bill Petok: Correct, because there are really good tools that can help people who are not able to conceive naturally. The reality is that sometimes it’s just bad luck. It isn’t anything you did. It’s just you’ve got a bad set of cards. Now, let’s work with the best tools we can to find satisfying solutions.
And I guess the other thing, and I know most people don’t want to think this way, is that if you’re not able to conceive with your own egg, there are donors. If you’re not able to conceive with a donor egg because your uterus can’t handle it, then there are gestational carriers. And, if you’re not able to build a family that way, there are other options that may be less desirable but no less rewarding, such as foster and or adoption, foster care or adoption, because those are viable options. Many people would say, “Well, those or second or third-tier options.” That’s a personal decision, but it’s important to note that there are multiple options and you want have a good handle on all of them.

Mark Trolice: Yeah, so many emotions come into play with this when you see women in their late 30s, and they talk about decisions that they made and the directions that they went and there’s regret. I say, “Nobody’s life, nobody’s life is the way they thought it was going to be, but we can’t look back. We have to look forward and try to do the best we could with what’s ahead with what we have and to find that type of fulfillment and joy in our life right now as opposed to ever looking back.”

Dr. Bill Petok: Yeah, and I think that’s a good message. The past has already taken place. There isn’t much you can do about it. You might regret it. I think all of us have things that we regret as we go through life. Hopefully, they’re not things that are chronically on our minds so that that’s where we’re living, like you said, in the past rather than going forward into the future.

Mark Trolice: Yeah. Well, excellent points, Bill. This has been just extremely valuable information for me and I hope, I know for all of our listeners. Please remember that this is … When you’re seeking your medical care, your mental health is equally if not more important as you’re going through this. We are very grateful to have our mental health professions to be working with us directly as partners as we’re taking care of our patients.
I’ve been speaking with Dr. Bill Petok. If you ever in the area of Baltimore or Maryland, or if you are in there, please seek him out. Valuable, valuable information, and he could help you as you go through your journey. Or, anywhere in the country, to seek out mental health professionals, but I would underscore the point of ensuring that they have infertility experience. There are very credible mental health professionals, but if they don’t have the infertility experience, then I think there is some lack of insight of understand the true impact that this has on a woman and a couple’s life. So I would encourage you to look into that.

Speaker 1: Thanks for listening to the Fertility Health Podcast. If there’s anything from today’s show you want to learn more about, check out the ivfcenter.com for all the notes, links, and tips mentioned in this episode. If you’re not already subscribed to the show, please press the subscribe button on your podcast player so you don’t miss a future episode. And if you haven’t given us a review or rating on iTunes yet, consider leaving a five-star review to help us reach and educate even more individuals in need. Thanks again for listening, and we’ll see you next episode.