SART Fertility Experts - When Is It Time to Stop Fertility Treatment? Expert Guidance on IVF, Grief, and Family-Building Options

When is it time to stop fertility treatment? In this episode of SART Fertility Experts, Dr. Kelly Lynch and clinical psychologist Dr. Danielle Kaplan discuss the medical, emotional, financial, and relationship factors that can influence this difficult decision. They explore IVF prognosis, treatment fatigue, mental health challenges, and the importance of setting realistic expectations. The conversation also covers alternative paths to family building, including donor gametes, gestational carriers, adoption, and living without children. Listeners will gain compassionate, practical guidance on navigating grief, uncertainty, and the transition to whatever comes next with hope and support.

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Hello, and good afternoon. Welcome to today's episode of SART Fertility Experts podcast, the podcast for people trying to build a family. My name is Dr. Kelly Lynch, and I am a practicing reproductive endocrinologist in Massachusetts and Connecticut.

My guest today is Dr. Danielle Kaplan. Dr. Kaplan, would you please introduce yourself? Sure thing. My name, as Kelly said, is Dr. Danielle Kaplan, and I'm a clinical psychologist in independent practice in New York City and a longtime member of the Mental Health Professionals Group of the American Society for Reproductive Medicine.

Danielle, I'm so happy to have your help today to discuss this very challenging topic, when to stop treatment. Sometimes it can be very difficult for clinicians and patients to know when the right time to stop treatment is, and we walk a fine line between trying to help our patient determine what's best for them, but also guide them in their decision-making and allow patient autonomy. Danielle, what are your thoughts about helping a patient know when it's time to stop treatment? Well, I think that there are a few indicators from the mental health side that it might be worth considering either taking a break or switching from one kind of treatment to another, and this is where I'm really interested, Kelly, in your opinion on what that means, or contemplating a life that isn't entirely about family building.

And I want to just not bury the lead here. I want to skip all the way ahead to the end of what I'm going to say, which is that if you are listening to this podcast and you are a person who is contemplating ending treatment, what I want you to know is that it gets better, that relationships are generally intact. If you have a partner going into treatment, you generally have a partner coming out of treatment, no matter what happens.

You will feel all sorts of things coming out of treatment and then begin to feel other things, not all of which are sadness and loss. It's a process. So when we talk about indicators for stopping treatment, I want to just preface it by saying it doesn't feel good most of the time.

So I'm going to just list a few indicators from a non-medical perspective, because I am not an MD, that maybe treatment is taking a very big toll and it's time to take a break. The first of those is that, as we've talked about on other podcasts, infertility care can be quite expensive. And there is a point, unfortunately, at which people's financial resources do run out and it becomes either a question of not being able to afford it or having to make some very difficult choices about what to do to afford that care.

So that's a big challenge that's also an access to care issue. I agree with you. And sometimes there'll be external limits too, like insurance coverage may only cover a certain number of cycles.

And so you may have some external forces determining when you need to stop as well. Yeah, exactly. Because in many ways, fertility treatment is a health equity issue.

Who's got access to what kinds of care? From where I sit, though, what I see much more often in my office is that people contemplate taking a break or stopping when the emotional toll, the stress, the sadness, the preoccupation becomes way too high for them at that moment, or when the toll on their relationship becomes way too high for them at that point. I think it's really important to be aware of that too. I think sometimes our patients can get so caught up in treatment that they might lose sight of what's happening to their relationship or to themselves.

And so you raise a really good point that it's really important to preserve yourself in this process. Yeah, a statistic that you'll hear a lot that happens to be true is that the rates of depression for women or people who are undergoing fertility treatment, whether they are female identified or not, but the rates of depression for people undergoing fertility treatment have sometimes been said to be comparable to those of patients undergoing cancer treatment. And I think, unfortunately, a lot of people kind of hear that backwards, and they're like, fine, I'm going to go through it, it's going to be miserable, I'm going to be depressed, and I'm going to get a baby at the end.

We take depression very seriously, we take your mental health very seriously. It's not necessarily an indication to stop it, it's an indication that you need care and support. And I'll talk a lot about that later.

I think the analogy to cancer treatment is a really good one. It's very difficult, there are cycles, there's highs and lows and ups and downs. It can be really quite difficult and very chronic.

It's not something that will necessarily be cured right away. It can be a long, long course of care for some patients. So you make a really good analogy there between cancer treatment and infertility treatment.

Well, so given what you said, Kelly, that it can be a long, long course, where do you as a reproductive endocrinologist start to think, huh, this might be the point where I'm going to advise the patient not to continue or not to continue in this way. So we try to individualize that and base it on the patient, their age, their diagnosis, their ovarian reserve, there can be a number of factors that can help us to know what a patient's chance of success might be. By far, we know the biggest predictor of success is age.

So whenever possible, whenever we start treatment, we try to give people realistic expectations about what their chances of success are, whether it's starting with oral medications and timed intercourse or starting with insemination or maybe in vitro fertilization. I think it's really important to set those expectations at the beginning of treatment so you can have an idea of your chances of success are and how many cycles might be reasonable to pursue so that you're not in a constant endless loop of cycles without success. And I think if it comes to that point where you're not having success and you've tried, you know, an appropriate number of cycles for whatever your age is, it may be reasonable to consider getting a second opinion or consider another course of action.

So there's a bit of a truism that floats around on the internet and that floats around sometimes among my patients that if a particular course of treatment hasn't worked after three cycles, it's not going to work. Is that true? I think that there is something to that. But no, I don't think we necessarily will stop after three cycles.

But I think that the statistic that I've seen quoted is about something like 85% of good prognosis patients will conceive within three cycles of IVF. But that's good prognosis patients. And not everyone is a good prognosis patient.

Some patients may need more cycles to have success. And there's some cases where it's reasonable to continue more than three cycles. So it really does depend on the patient and their specific diagnosis.

I think for IUI cycles, there's data that suggests that, you know, more than three cycles doesn't typically have very good chances of success. But again, there's also data that shows pregnancies after three cycles. So for those patients who can only afford to do IUIs, there is some potential benefit to continuing if you have reasonable chance of success.

Okay, so for anybody listening out there who's done three cycles of something, don't go to your RAI and say Kelly Lynch said no, because that's not what we're talking about. But since we're talking about prognosis, what is a good prognosis? And what's a poor prognosis when it comes to IVF success? That's a good question. So I guess a poor prognosis would be less than 5% chance of success.

Actually, ASRM defines these for us and says that if you have a less than 5% chance of success in a cycle, that's considered poor prognosis. And then futile, or, you know, very poor prognosis would be less than 1% chance of success. So I think it's important to distinguish those two.

And again, review with a patient before they start a cycle, what we think their chances will be. And I think it's important to know that it is okay for a physician to say no, if a patient has, you know, or it appears that treatment is futile, because there are some risks with treatment, and we don't want to put a patient through unnecessary risks either. So it is a careful balancing act for us and our patients to try to come up with the right recommendation and the right guidance.

But I think it's always a good idea to get another opinion if you're considering stopping treatment or if you don't feel ready to stop. Yeah, and I think that you are bringing up two really important points. One, and this is not an original thought, this is actually a quote that I read in a paper, is that for many patients beginning IVF, what they believe or are told or see in the media is if you do IVF, you'll wind up with a baby.

So if that is not the case for you, it can feel very confusing. It can feel like something went wrong, or the protocol was wrong, or you didn't do enough cycles. It's a challenging thing when quote, everyone you know gets a take-home baby from IVF, and you're not quite sure why this is not happening for you.

Right. No, that's exactly right. Not everyone is going to have the same chances of success, much as we would like to try.

IVF is a very effective treatment for infertility, but it doesn't work for everyone. You know, would we like to give everyone the chance to try? Absolutely. And you know, will we do everything we can to help a couple have success? Absolutely.

I want to go back to that question you asked about what makes a good prognosis patient. I technically, we would say if you're less than 35 years of age, because after age 35, we do start to see lower chances of success, mostly because of lower egg quality that we notice as we age. And that's a natural part of aging.

Now, there will be some people who will do very well after age 35, but not everyone. And that's the hard part about this is it can be hard to generalize. Yeah, yeah.

And of course, that's the other hard part about this. I think you and I both do what we do, because we are so invested in being with patients for the happy ending, right? We are so invested in helping people, in your case, actually grow their families, or in my case, hanging on while they are trying to grow their families. And so when you see that somebody's chances don't look as good as you would have hoped, I think it's hard for us too.

It is really hard. And it can be very hard to tell someone that they might need to stop or consider other options. Of course, we we don't want to tell someone that it might not work.

But at the same time, it's really important to give realistic expectations. And and to be honest, because it does take a lot out of you people. And fortunately, our patients have people like you to help with some of these very difficult decisions, and also just with the self care that's needed during this very difficult process.

Yeah, absolutely. And I'm hoping we can talk a little more about that. But I also want to point out if you're an REI listening to this podcast, we also have data to support that if you ask patients why they would consider discontinuing treatment, they say all the things that we have said, they've said, it's too expensive, it's taking a toll on my mental health, it's taking a toll on my relationships.

And the majority of patients say that they will not stop treatment unless their doctor tells them that it's time to stop treatment. So it is really important for us as physicians, to be able to be honest with our patients about what their chances of success are and what the alternatives are if they are willing to consider alternatives. Okay, so what are those? Yeah, let's talk about alternatives real quickly.

So one option is to consider perhaps using an egg donor if you have diminished ovarian reserve and are you know, either have poor fertilization or poor embryo development. Sometimes an egg donor can be helpful. Not an easy decision for anybody.

Nobody wakes up and says, I want to get pregnant with an egg donor. But it is an option for some people and it can help you build a family and help in certain circumstances, it can be a very successful option. There are other people who have implantation failure and might benefit from a gestational carrier.

Another option that can be very difficult and very expensive to consider but may be appropriate for people with good quality embryos who aren't able to conceive. Sometimes it's a different situation, a sperm donor might be needed. And again, you could also consider building a family through adoption or foster parenting.

And finally, being child free is also a perfectly reasonable option. Yeah, it is. And I want to say a word about that language, which is that among people who wind up with that option, there are all different kinds of preferences for language here.

And it's my hope, in fact, that one day we can interview somebody who actually went down that path and talk about what that has been like for her. But some people will say child free, some people will say childless, not by choice. Where you sit now and where you sit in a year and where you sit in five years may look very, very different.

So as the meaning that you make of this changes, the language that you might use around it changes. That's a great point. And I think the other thing is that we don't expect anyone to make these decisions lightly.

These are very difficult, heart-wrenching decisions to stop treatment or to consider another option. And, you know, I once heard a wise mental health professional that I was able to work with say, expect it to take a year to get comfortable with some of those alternatives. And so it's not something that we would ever encourage someone to make a quick decision about but really sit with it for a while.

Well, I think like any change, deciding to use donor gametes, which is what we call donor eggs and sperm, takes time. And grief takes time. And for a lot of people who are ending treatment with their own genetic material, there is grief.

And just as we wouldn't expect somebody to adapt to the loss of someone they love instantaneously. You know, okay, I'm sorry, your partner has passed. Here's your new partner.

This is going to be great too. It doesn't work like this. No, it's exactly as you say, there's mourning and there's loss and there's grief.

Well, there's, it may not be the same type of loss we would expect to consider or to call it, but this is definitely a loss, a loss of your fertility or the ability to conceive with your own gametes or eggs and sperm, as Danielle pointed out. So you really have to take that into account and give yourself time to grieve if you need that. Well, I'm going to throw a term in here, if you don't mind, Kelly, which is that in my corner of the field, we talk a lot about disenfranchised grief.

And disenfranchised grief is the kind of grief that you feel that there is no socially recognized name for. So there is a name for what you are. If you have lost your parents, there is a name for what you are.

If you have lost your partner, there is no name for what you are or what you feel. If you have lost the hope of conceiving a child who is genetically related to you or having a hoped for child, no matter how they join your family. So one of the things that we do know is that we want people to get as much social support as possible when they're ending treatment.

Couple relationships actually do better if both people in the couple are getting social support when they're ending treatment. So it does feel very lonely and confusing and isolating because there is no name for what was lost. And it doesn't mean that you don't deserve and benefit from support.

That's an excellent point, Danielle. And I think it's helping to pinpoint and recognize that loss that maybe they can't talk about with just anybody. And to help acknowledge that is so, it's so important and something that we also need to do a better job of as physicians, that it's not going to be something that we can easily put a name to it, but we know that hurt is there.

So tell me what your, how do you help a patient who's having difficulty deciding whether or not to discontinue treatment? What are your key pieces of advice to patients who aren't sure or aren't ready to stop yet? Okay. So first of all, just about everything I'm about to say, I stole from some very wise women who do this job right alongside me. So no original content here, just a lot of collective wisdom.

I don't tell people what to do. I can tell people what to do. And because I do not have a medical degree, I cannot say to somebody, boy, this is your ovarian reserve, and this is your age.

And it looks like your prognosis is not that great. So in a sense, I have the easy job, you have the hard one, because I never say, I think it's time to stop. And in fact, I'm trying to remember the number of times that I have ever even said before a patient has said it, are you considering stopping? But if somebody is saying, this is taking a toll on me, I am depressed every day.

All I think about is whether or not I'm going to have a baby. Some of that is normal, right? And we can talk a lot about coping through a treatment cycle, which is different from coping with the end of treatment. But often I will help patients try to imagine life in six months, a year, five years, if they can imagine having themselves go down different paths.

So what do you imagine life with a donor-conceived child to look like in year one might be very different from what you imagine in year 10. What do you imagine a life without children to look like next week? It's going to look terrible and empty and miserable. What do you imagine it to look like in year 10? And sometimes it's really a function of what someone can wrap their head and their heart around to tell them what the next right thing is.

And what I will often say to patients is often all we've got going for us is feeling comfortable with how we made the decision, because we don't know what decisions are going to look like several steps down the road. That's great advice. I love your suggestion to use some guided imagery to kind of help them see themselves in the future, because it can be very hard right now in the thick of this difficult time to try to imagine a way forward or a different sort of plan.

But that's such great advice you're giving to your patients. And I think that this has been a really helpful conversation for helping people understand that there are other options out there beyond infertility treatment, and that we as providers in this specialty are really looking to help people make the best decisions for themselves. And our ultimate goal is to help you either have a family or be comfortable with the fact that you tried.

And we just want you to feel good about that. And, you know, give you the best opportunity we can to help you reach your goal. Absolutely.

And I just want to add a couple of thoughts before we wrap up, which is really circling back to where I started, which is that if you talk to people right after they decide to end fertility treatment, they're really sad. They're really mourning. People will feel like they have pursued something that hasn't resulted in the thing they've put this much effort and energy and money and time and desire into.

And if you talk to people five years out, 10 years out, what you will find is that it's not that people are saying, Oh, I'm so glad I did all this fertility treatment, and it didn't result in a baby. But what they are saying is, I have had to find and I have found new ways to connect to my body, right, not just as something that didn't do the thing I hoped it would do, but as something that gives me pleasure and joy. I have found new communities to connect to, not necessarily a community that shares identities as parents, but maybe communities that share identities as any number of things that you didn't know you were.

Relationships are often closer having gone through this regardless of whether fertility treatment results in a baby or not. And people begin to make meaning out of the way that they walk forward. So again, I'm not saying it's all happy and joy once you decide to stop.

It's really not. But there is joy at the other end of it. Danielle, I love your positive spin on this.

And I hope that our patients out there who are listening can hear this and know that even if your journey isn't a successful one, even though we really hope it will be, that you can potentially find some kernel of hope in that it will make you a stronger person and maybe strengthen your relationship having gone through the struggle of treatment together. And I think that it's really good to think about it as something that can help you and have more perspective about life in general. Yeah.

And if you're hearing this and saying, yeah, right, that's okay. Right. That's totally fine.

There is support out there. There's peer support. There's mental health support.

There's support from people who have been there before. Nothing has to feel any way other than how it feels right now. Right.

That's so great, Danielle. Thank you so much for taking the time to talk with me today. Thank you for listening to today's episode of the SART Fertility Experts podcast, the podcast for people trying to build a family.

My guest today was Dr. Danielle Kaplan, a licensed clinical psychologist, and I am Dr. Kelly Lynch from a practicing reproductive endocrinologist. Thank you so much for joining us today. Thank you, Kelly.

It was a real pleasure. The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and its affiliates. These are provided as a source of general information and are not a substitute for consultation with a physician.