Earlier this month, we were honored to be speaking to Dr Helen Riess about the important concept of empathy for healthcare providers (See her TED talk here). Dr. Riess is Co-Founder and Chief Scientific Officer of Empathetics. She is an Associate Professor of Psychiatry at Harvard Medical School. Her research on empathy and the neuroscience of emotions has been published in peer reviewed journals, and she is a core member of the Research Consortium for Emotional Intelligence (CREIO) as well as a faculty member of the Harvard Macy Institute.

Monica Moore: Thank you for taking the time to speak with us today. Our field, of reproductive endocrinology and infertility (REI), is constantly evolving with exciting new advances that continue to improve pregnancy rates, but we are still not at 100%, so often as REI nurses, we find ourselves often having to give bad news to a patient population that is both incredibly savvy and stressed, without having been properly trained in delivering this news. I’m so happy to talk to you today about how to impart bad news sensitively and in a way that helps our patients.

Helen Riess, MD: Hello and happy to talk to you today.

MM: As discussed, the REI field is not life-threatening in the true sense of the word, but it is life-altering to our patients.

HR: I agree, for them it is life-altering as it could mean the end of a dream.

MM: Yes. In keeping with this, can you give us a brief overview of the role of empathy in patient interactions, particularly when delivering bad news? Can you give us an example of a few empathetic statements?

HR: The preparation for giving bad news really begins with the provider, who has to be mindful that she is the messenger of bad news. He or she needs to think: “I am not the bad news myself, but how I convey it is what this person will remember”. Really, it helps to put yourself in the patient’s shoes and think, “How would I want this news delivered to me?”. That is a starting point. I think that the role of empathy is both emotional and cognitive resonance. The emotional part is to consider how hard it is to hear this news or how disappointed they will be. The cognitive perspective includes considering what this news is going to mean for this patient’s life. In this sense, it is helpful to have some information about the patient. Is this the patient’s fourth or fifth attempt to conceive as opposed to the first time, when they know that they have a few more chances? What about the patient’s age? Is she 45 or 46 or is she 36? Is this the patient or couple’s last attempt, so that this news maybe the end of the wish and the hope to have children at all. The cognitive perspective is really important to consider not just what this experience would be like for you, but what would it be like for this patient. Both the emotional and cognitive component are crucial.

The important concept about delivering bad news is that people are going to remember more about how you said it than what you said.

You would want to avoid bluntness and deliver the news in a way that doesn’t feel uncaring or perfunctory. Realize that even though you might say “Sorry, you are not pregnant” ten times a day, this is the first time this person is receiving the bad news. We recommend using an empathic bridge statement, such as using phrases like, “I wish I had better news to share” or “Unfortunately, the test results came back in a way that I think is going to be very disappointing to you”. I think we all have witnessed bad news delivered bluntly. The important concept about delivering bad news is that people are going to remember more about how you said it than what you said. Everyone who is struggling with infertility already knows that there is a possibility that it won’t work, so it won’t be a shock, but what they really need is someone who is offering care and compassion. We say that infertility is not a terminal diagnosis, but in a way, it is. This is the end of many people’s hopes and dreams. Bad news is really any news that permanently affects your vision of how you were going to live.

Bad news is really any news that permanently affects your vision of how you were going to live.

MM: One of our dilemmas as REI nurses is that we have certain information that we need to convey during the phone call, such as, “Please call us with day 1 of your next period” or “Schedule a consult with your physician once you are ready” and sometimes due to our discomfort or need to impart that information, we rush the delivery. Also, often, we have to relay bad news over the phone (negative pregnancy tests or pregnancy levels not increasing appropriately, for example). We are obviously unable to use non-verbal strategies to empathize, but what can we say or do in these situations that would be helpful?

HR: It is much more difficult when you can’t see if a person’s eyes are misting or what their facial expression is so that you can respond in an appropriate way. One of the ways to manage this is to acknowledge this. Saying something like, “It’s really unfortunate that I have to deliver this news over the phone because I can’t see your response, and I know that this is a lot to take in, but we can pause right now to let this sink in and I’m here at the other end of the line while you process this”. So, invite the pause. Many people rush to fill in a void because they are nervous or afraid to hear that the person is upset, but if you can frame it using the statement above, I think that the more that we convey our limitations; the more we are overcoming them.

MM: I’ve never thought of saying that, because it feels like stating the obvious, but that makes a lot of sense.

HR: It is obvious, but it is allowing the awkwardness to be awkward. If you have psychological support available at your clinic, you can also say, “We have support staff right here at our clinic that are available to help you deal with the emotional disappointment of this”. You don’t have to use the word psychologist or social worker, but really refer to them more to what their function is, which is to support the patient. Also, you don’t want to use the words “depression” or “cope” which might make the patient feel that they are having an abnormal reaction or response.

MM: I find that a 2 second pause feels like a 20 second pause. I tried it the other day and, it felt awkward and was difficult to not fill in the space with unnecessary chatter.

HR: I think it’s important to frame what you are doing, such as saying “I know this is difficult to do over the phone, but I want to take a moment to pause to let this sink in” so that the patient knows that you haven’t just gone silent over the phone.

MM: Just to add some more complexity to this situation, in some instances, the person who is delivering the bad news does not know the patient well, for instance, the patient’s primary nurse is away that week or their physician is in surgery and another, covering physician or nurse makes the phone call. Obviously this is not ideal, but any suggestions for how to proceed with this difficult conversation when a strong relationship doesn’t exist between patient and provider?

HR: I think stating the situation, which is “Hi, my name is Monica Moore. I’m calling from xyz clinic or Dr X’s office. I know that you don’t know me, and I wish that your doctor or nurse was available to be making this call, but we discussed it and we thought it might be better to give you the information, even though you don’t know me well, so that you are not anxiously awaiting the news”. Maybe it makes sense to give the patient a choice, preferable in advance, such as “Would you rather hear the results as soon as possible or would you rather wait and hear them from someone from your team who knows you better?” Be transparent about the situation because it gives the patient a choice.

…the more that we convey our limitations, the more we are overcoming them.

MM: Sounds like it’s best to be proactive in this situation. If a nurse knows that she has a patient who is going through a difficult time, has had many losses or failures, or is emotionally labile (we probably can all identify our patients like this easily) to have this conversation in advance. For example, one of your patients will be having her pregnancy test on a Thursday, and the nurse knows that she is off on Thursdays. What I’m hearing from you is that it would be best to talk to the patient prior to the pregnancy test and let her know that you are off that day and to mutually decide how she would like the news to be delivered.

HR: I think you are absolutely right. The more that you can share the dilemma with the patient and empower them to let you know what they want, then they have the choice. The nurse delivering the news can still say “I wish you could be hearing the news from someone who knows you better” as the empathetic bridge statement.

MM: what you told us so far has been incredibly helpful. I think we sort of know some of these strategies but to what extent we put them into practice on a regular basis, I question, even in my own personal experience. What resources are available for us to utilize so that we can learn and practice these strategies?

HR: Empathetics has a “delivering bad news” module. It is about an hour and it’s all about delivering all kinds of bad news. We review verbal and non-verbal aspects and how to manage your own anxiety. It’s accredited for nurses to get CEU’s (and also for physicians). It’s an interactive, online course, so people have to listen to different scenarios and make choices. Sometimes it’s helpful to see all different scenarios where someone maybe delivers the bad news in a way that’s not ideal. Some people can relate to seeing what not to do as a learning point. We have a whole suite of empathy training that talks about difficult patients, how to have empathy…etc. Those resources are there. We offer in-house specific training in empathy as well.

MM: As you are talking, I’m thinking that one strategy that we can use is role-playing. I’m sure that you use this in your practice. Maybe the newer/novice nurse acts as the ‘nurse’ and the experienced nurse is the ‘patient receiving the news’.

HR: Absolutely. We offer manuals that train facilitators to do this where the role-playing situations are basically spelled out. What kind of reactions can you expect and how do you draw these reactions out of people so that you can address them? We can send a trainer there or you can send your team to use and we can teach you how to offer these facilitator workshops. It’s exciting to see people understand that this is about managing the whole person, not just the biology of getting pregnant.

MM: We really appreciate your time and input, thank you so much for speaking with us today.

HR: Thank you for having me, my pleasure. If you would like more information about empathy training, please email dblake@empathetics.com.

This photo was taken during the first hour of a seven-hour car ride that was as crazy and stressful as you can imagine it would be. My kids couldn’t seem to coordinate their bathroom breaks, there was bad traffic, and many, many squabbles in the car where I threatened some unmentionable actions and said things that I regret.

But you would never know just by looking at this picture. What would have been real and accurate is if I took a before and after photo, the ‘after’ taking place in the throes of crazy, when I was sweating and talking to myself. In fact, if I’m being honest, even though they start off well-intentioned, most of my long car trips end like this one, where we are all fighting and fussing. But we don’t show that stuff, those unvarnished emotions, to the world because they are deemed unacceptable. Instead, we process them, suppress them or package them up in a nice little box or, in this case, an acceptable picture. There’s a stigma, still, attached to being authentic and admitting that you are struggling.

In my role as an infertility nurse and nurse educator, I often function as a patient concierge, counseling people during their fertility journey. Some formally, but many people informally. I can’t tell you how many times I am approached by a friend who has read one of my blogs and asks me to talk to their daughter, family member or friend about what they should do when they are ready to conceive. I do talk to them, and I actually cherish these interactions, being able to demystify or explain complex processes.

Lately, I’ve been speaking to those who are not actively trying yet, and we discuss what they can do prior to pregnancy. I go over the basics, taking vitamins, getting immunized, achieving a healthy weight, but what I really want them to know is that preparing for pregnancy (whatever that path looks like for them) is an inside job.

Here is the irony about female fertility: You don’t know if you can conceive unless you try and you can’t try until you are ready to have a baby. There are no previews or glimpses into the important machinery that is the female reproductive system, so we can’t ‘prep’ for it until we are ready to ‘use’ it. This is a foreign and uncomfortable concept to most of us.

Think about our past experiences which form the context for this current one: we have an important test, we study for it. We are running a race, we train for it. You decide to start a family and you, well, go for it. Fertility (within reason and depending on age) follows a bell curve, like many processes in life, so that the majority of people get pregnant in a few months. Some get pregnant right away, and we know this because we are often inundated with these stories, like folklore. Most take a few months, and some need assistance from a fertility clinic to conceive. I can tell you, though, that I review lots of pregnancy records for my clients and a women might ‘remember’ that she got pregnant in a month, but the OB/GYN records state 3-4 months. It’s just all about perception.

Many of my friend’s daughters are reluctant to call me, either because they are embarrassed, or just don’t want to label that they are trying-because then, if it doesn’t work, they have failed at something. Many of them are ‘not not trying’, which I assume means not using birth control and having sex for fun instead of on certain days of the month.

Why do we, as women, feel ashamed or embarrassed to talk about this kind of stuff? Social media doesn’t help as it perpetuates a myth that everyone is happy, that situations are under our control most of the time and, when they aren’t, they are handled with humor and grace. If we are being authentic, we know this isn’t true and I am guilty of perpetuating this as well.  I post pictures of my kids and my life (like the one above) that don’t truly reflect the fissures in it, posed pictures while everyone is smiling or funny ones where it seems like I’m laughing at something when I wanted to yell or cry. I still felt the frustration that the situation generated, but took the picture once it was over and processed. So, it probably never really got resolved, just repressed and reframed.

Why do we correlate importance with what’s visible?

This is what happens to young women who are struggling with infertility. They feel the anxiety of trying or wondering when to try, how to try, but then internally compartmentalize it so that they can seem ‘normal’ to their OB/GYN or family members. This is the snapshot that we see on social media, not the real person with real feelings. I talk about this with my patients.

One in particular is so incredibly put-together while she is on the phone, regardless of whether it’s good or bad news. But once, in an unguarded moment, she revealed to me that she is a ‘mess’ after she hangs up the phone. She’s not a mess. She’s a deeply feeling person in a messy situation. There is a difference. But I can reassure her many times and the message might be received but not heard, or heard but not absorbed.

I am working on a venture to develop strategies for nurses to help them find joy in their jobs. I am helping to write protocols, educate them and refine their systems so that they are more efficient. What I can’t emphasize enough, though, is that the women need to do the inner work.

External factors and stressors will always be present. We need to feel that we are good enough, strong enough, just ‘enough’ regardless of our path or outcome. I’m not an expert in this field, and am just beginning to study it. But I  have spoken to a few who are well-versed in it, and here are some of the activities that they recommend for developing inner strength:

• Journaling or writing. I started writing my blog posts as a form of stress release after a difficult patient conversation and find that they are just as helpful to me as they are to others. It was difficult for me to reveal how I felt on that car trip, and allow myself to be vulnerable, but vulnerability is a powerful tool, for more on this, read this excellent book by Brene Brown.

• Going outside for a walk or exercise. It’s not just about the aerobic activity, it’s about the contact with nature and invoking your senses to try to get you to focus on the present moment. If the weather precludes outside activity, go to the gym to move, but smelling the leaves or feeling the sun on your face or putting your feet in the sand brings you back to the present. Nature can stop, if even only for a few moments, your mind from going down the well-worn path of would-haves and should- haves and endless ruminating and thought-looping in which we have a tendency to engage.

• Meditation. This one is tough for me, but I highly recommend the work by Dan Harris on this subject. He became interested in happiness and meditation after having an on-air panic attack that millions witnessed. As a result, he became interested in the healing powers of meditation, writing a book and developing an app, both of which I’ve found incredibly helpful. It’s easy reading and he somehow manages to be both informed and self-deprecating.

• Reading. I love to read, but need to be picky about the tone and subject matter of the book depending on my mood. Sometimes I want to learn, sometimes I want to laugh, sometimes I want to escape. If you need ideas for good books, check Pinterest or go to the GoodReads app to see what your friends recommend.

• Talk to a friend. Most likely your friends have struggled with some issue in their life, maybe not infertility, but something that they needed to manage. It’s ok to share your challenges with them. Most are grateful that you are willing to open up to them. Your job, in return, is to cultivate your listening skills. This book by Celeste Headlee really helped me with this and I recommend it to all of my clients and friends.

I am happy to talk to you or your daughters about their fertility. Honored, actually. But some of you ask me what you can do, besides refer them to me. In this situation, you don’t have to be an infertility nurse to make a difference.  Encourage them to develop inner strength. If you think they are struggling, ask them, as their Facebook posts aren’t always a reliable reflection of their inner psyche. Support them in the knowledge that it’s ok to allow external events to affect you, without defining you.

“A healer is not someone that you go to for healing. A healer is someone that triggers within you, your own ability to heal yourself.” –Unknown

I often role-play with nurse clients as I find it is an important teaching tool in exposing the nuances of patient care gaps that aren’t obvious by using traditional methods.

For example, I use this format when reviewing how to convey negative results, where I become the ‘patient’ on the receiving end of the phone call. Last week, during a client coaching session, my ‘nurse’ told me about my negative result, then quickly advised me about calling with my next Day 1 to start the process again.

When we later analyzed the conversation, I pointed out the haste in which she discussed next steps, arguably before I had a chance to process the bad news – a common complaint that I’ve heard from patients over the years. My ‘nurse’ admitted that she knew she was rushing, but was afraid that I would ask her something that she didn’t know, or would express an emotion that she couldn’t handle, one that would make her uncomfortable. But discomfort can be a potent tool, enhancing the patient experience, particularly during an emotionally-charged interaction.

Learning to embrace discomfort was a lesson that I learned 20 years ago in a yoga class, when my teacher told us that once we get deeply in the pose, that we are actually just getting started. The ‘work’ of the pose is what you do from there, when your legs are shaking and you are sweating and hoping that she remembers to count the seconds, and not forget while talking to another student.

You have a choice: do you stay, let up, or go deeper, curious to explore what happens after that? Never to the point of pain, but not skirting around the feeling of deep sensation, sensation that is uncomfortable. The times that I persevered, I discovered something new. Maybe that my legs were weaker than I thought, maybe that my right side was stronger than my left, and, after years of practice, maybe that I had feelings that were stuck, that needed permission to be released. I even found myself tearing up without any warning in class. This is not uncommon, according to my teacher, particularly during hip and shoulder opening poses since many of us hold onto stress in those spots.

This taught me something else about discomfort. It is the result of many factors, not the least of which is that it can be a sign you have triggered something unresolved in your own life. Had I not pushed, not crossed that threshold from content to discontent, I would have missed out on growth potential. I discovered an insight that, in retrospect, has proven to be important in my personal and professional life.

Ok, back to how this applies to being an infertility nurse.

I’ve learned to feel honored to be the go-to nurse in the offices I’ve worked in for relaying negative pregnancy test results to patients. Of course, I don’t enjoy the part of my job where I have to sever the hope of a patient that she achieved a pregnancy that month. I do, however, realize the weight of my contribution to this challenging conversation. Even though I can’t change the news, I can positively affect the experience of receiving it.  I find that applying this perspective gives my role the appropriate level of reverence and gravity that it deserves.

I invite you, as the nurse, to experience what it feels like to settle into the pause between giving bad news and advising of next steps. Allow the patient to express whatever she is feeling and just listen, as awkward or uncomfortable as this may make you. No empty words or platitudes, no story about your own life or other patients’ journeys unless she asks.

By pausing, you are creating an environment that gives her permission and space to mourn a loss. If she asks, “why,” you can answer honestly, and appropriately, that you don’t know. That she may never have an answer to this, but that she can rely on you, and you will be there to guide her through the next steps. If she asks what these are, then advise her to call with Day 1. If she’s not there yet, then maybe the ‘next step’ conversation takes place the next day on a subsequent phone call.

[amazon_link asins=’1592408419′ template=’ProductAd’ store=’fertileheal04-20′ marketplace=’US’ link_id=’019a1f78-2a2e-11e8-ab17-81713c8cc1db’]Realize that, at this time, the person who needs to feel heard is the patient, not you. At worst, she will be upset or angry and you won’t know how to respond, and maybe all you can do is express regret or apologize. Allowing yourself to be vulnerable also has its benefits by promoting human connection, just ask [amazon_textlink asin=’1592408419′ text=’Brene Brown’ template=’ProductLink’ store=’fertileheal04-20′ marketplace=’US’ link_id=’9075476b-2a2d-11e8-8580-6fccfb0ae5bf’].

As a disclaimer, I am just asking you to listen, not advocating that you absorb the patient’s pain. This can lead to compassion fatigue, a very real and damaging potential consequence of being a health-care provider.

Finally, whenever you have to impart bad news to a patient, you may be tempted to hasten the delivery of the news or end the phone call quickly. Consider this first: settling for being comfortable can lead to complacency and missed opportunities for both you and your patient.

You might notice that some people seem to be able to maintain a healthy weight effortlessly while others really struggle. Maybe you personally fall into one of these two groups and it’s difficult for you to relate to the other.

However, gaining an understanding of the reasons why people struggle to lose weight can help give you a better perspective when working with overweight or obese patients.

Traditionally, we are told that gaining or losing weight adheres to a mathematical formula: if caloric intake = caloric expenditure, you maintain weight. Following that same logic, caloric intake > expenditure = weight gain, and caloric intake < expenditure = weight loss.

But we are human beings, not math problems, so we have some nuances that are not addressed by a simple formula.

Satiety is the result of a cascade of events. It starts with the sensory perception of food, called the cephalic phase. Cephalic phase responses (CPRs) are physiologic responses that your body has when presented with the sensory aspects of food (such as sight, smell and taste) which communicate with the brain and advise it to start the process of digestion (Smeetz et al, 2010).

Your body starts the process of achieving fullness even before eating a bite of food. As you eat, there are receptors in the stomach that respond to the volume of food once it arrives there. As the stomach expands, due to the bulk of food or liquids ingested, signals are sent out to eventually stop eating.

Hormones also influence eating patterns. A substance called leptin, known as the ‘satiety hormone,’ is produced by fat cells after someone eats. Leptin is part of a feedback system with the hypothalamus, a structure in the brain that controls, among other things, appetite.

When the system is working properly, increased leptin levels signal the brain to stop eating. Another hormone, dopamine (sometimes known as the feel-good hormone because it is secreted in response to activities that, well, make you feel good) is released when visualizing food or thinking about eating. This process is termed the ‘dopaminergic reward system’ as it activates reward centers in the brain so that people get a rush, so to speak, from eating. How much of a perceived reward is not the same for everyone, and this difference can also be an important contributor to over-nutrition (Val-Laillet, et al, 2015).

Ok, so with all of these mechanisms in place, how can anyone be overweight? Must be due to lack of self-control, right?

Actually no, and here’s why: Unfavorable genetics are largely to blame. Some people are born with glitches in the satiety system at any and all levels.

For example, human and animal research seems to indicate that certain types of gut bacteria make it harder to lose weight (Million et al, 2013). In one experiment, lean rats who had no endogenous stomach bacteria were injected with the bacteria of either rats who were obese or rats who were lean.

Guess what happened to the lean rats who were injected with the obese rat bacteria? They gained weight. So, it seems that people who have this gut bacteria are already prone to being overweight before they even put food in their mouth. Wouldn’t it be great if we could all be injected with lean-weight gut bacteria? I’m sure this is in our future but, unfortunately, we are not there yet.

Metabolic differences can make some more prone to overeating. Studies that compared dieters (people who diet frequently and, therefore, are likely overweight) with non-dieters found that dieters need to eat less than non-dieters just to maintain weight. Any extra calories, then, are converted and stored as fat in this group.

The cause of this could be that they are dieting and restricting their intake or that being overweight puts them at risk for this, but the outcome is the same: it’s easier for this group to gain weight while eating the same amount as some of their peers. Not fair, right?

Remember the dopaminergic reward system? There is emerging evidence that people who are obese have differences in their genes that affect dopamine signaling, such that their reward centers are hyper-responsive to food cues. They are susceptible to food cravings and overconsumption because they get a bigger ‘rush’ from seeing or eating food more than their lean counterparts do (Val-Laillet, et al, 2015).

This dysfunctional system can be so strong that it overrides the normal controls and feedback systems in the body that are in place to assure caloric and energy equilibrium. The reward centers for lean people may be less responsive to food, so it’s less of an effort for them to push the bread basket away or leave food on their plate. For them, eating isn’t the source of intense pleasure, so they are not as tempted by appetizing food, which may be misconstrued by others as self-control. If the above isn’t bad enough, there is something called, ‘leptin resistance.’ If you recall, leptin is the satiety hormone, the one made by fat cells that signals the brain to tell it to stop eating. Well, it has been found that obese people can have even higher levels of leptin than their lean counterparts (this makes sense since obese individuals have a more adipose or fatty tissue) but not be as sensitive to them (Myers, et al, 2012).

As a result, even with these high levels, obese people still have a desire to eat. This becomes a vicious cycle where the leptin resistance leads to overeating, which increases fatty tissue, which increases leptin (but the brain doesn’t respond to it) and the cycle perpetuates itself. As of now, there is no ‘cure’ for this.  Although some pharmaceutical approaches to increase leptin sensitivity appear promising, none are currently approved.

Don’t rush the soup. All of the above factors seem to make it easier for naturally lean people to succeed, and create very real challenges for people who are obese. These challenges aren’t insurmountable though. There are some strategies that might help. Taking extra time to smell and savor your meal before you eat it prolongs the cephalic phase of satiety and allows extra time for your body to recognize that it might be full. Eating soup or drinking water prior to eating can induce greater fullness by delaying gastric emptying, and stomach distention stimulates the gut receptors to tell the brain to stop eating. Also, there is some data to show that people can reset their leptin levels with long-term healthy lifestyle changes like eating whole foods that take longer to digest and exercising regularly.

Most importantly, for us in the health care industry, it’s important for us to not judge others who are overweight. Weight bias seems to be one of the few remaining acceptable biases left. Studies on weight bias report that overweight people have been labelled as ‘lazy, awkward and non-compliant’ as well as other hurtful and deleterious terms, even by the medical providers who take care of them (Foster, et al, 2003). As you can imagine, then, even a perceived weight bias by you or someone in your practice would negatively affect patient care and retention of overweight or obese individuals.

Related: How to talk to your fertility patients about their weight without seeming like a jerk

Since obesity is on the rise in the U.S., and an increasing number of our patients will be affected by this, it’s incumbent on nurses to understand what leads to over-eating.

We need to realize that eating behavior is multifactorial, the result of a complex interplay of many factors, only some of which are addressed here. Blaming over-nutrition on a lack of self-control is not only unkind, it’s untrue. Please realize that any discussion of weight should be done kindly, compassionately and with the knowledge that, for some, the decks are stacked against them.

References:

Foster, et al. Obesity Res 2003, 11: 1168-77.

Million, M. Et al. Clin Microbiol Infect 2013, 19(4): 305-313.

Myers, M.G. Et al. Cell Metab 2012, 15: 150-156.

Val-Laillet, et al. Neuroimage Clin 2015, 8: 1-31.

Sheets, et al. Nutr Rev 2010, 68(11), 643-55.

Dear Wonder Woman,

You are beautiful and you are not just a sum of your (sometimes seemingly faulty) parts. Because that doesn’t take into account your spirit and grit as you proceed on this path.

This journey, although tortuous at times, will make you stronger, even if you don’t see it right now. We will go through it together. I can’t possibly imagine how you feel, but I do know that you feel and that you feel deeply.

I care so much about you and your outcome, that I sometimes seem insincere. You might think I am flippant or not listening but I am actually protecting myself. It’s often that the thought of feeling helpless, incompetent, even futile, haunts me long after I hang up the phone or leave the room. Sometimes I lie in bed at night thinking if there is anything else I could have done, anything else I could have said….

If I could give you some advice, it would be that it’s so important to take care of yourself and allow others to take care of you. This is not being selfish, it’s practicing self-care. This is nourishing yourself at a time when you might feel that the outcome is out of your control.

And here is a secret: we experienced infertility nurses aren’t impervious to your discomfort during this process, even though you might not see us angry or sad or frustrated. Every time that we draw blood, we bleed for you. Every time we (inadvertently) hurt your feelings, we hurt too. Every time you feel pain, we ache too.

But every time you are ready to start again, we are right there with you, hopeful, excited and optimistic because we know that, for almost everyone who hopes to conceive, there will be a positive outcome.

So, my final thoughts are an echo of my first.

Please try not to let this process define you. Here is how I would define you: worthwhile, strong and amazing. Even when you don’t feel that way, you are. I should know, I’m the expert.

Finally, I want to thank you for teaching me to be a better nurse and person, just by knowing you and allowing me to care for you during this private and emotional time.

For this, I am grateful.

I was talking to my daughter the other day about why she shouldn’t post a picture on social media of a party that she attended because other kids who weren’t invited might feel sad and excluded seeing the post.
She persisted, but I was resolute. She finally agreed, but stomped away, mumbling how strict and uncool I was (both of which are true).
Why do I feel so strongly about this? Mostly due to working with infertility patients for the last 20 years who are often ‘left out of the party’.

Think about it.

Many women spend their 30’s either pregnant or breastfeeding. Most conversations revolve around topics related to challenges of these, i.e the number of dirty diapers in a day, breasts leaking at inappropriate times, what to do with young kids from 5- 7 pm when it was cold and dark outside and they were bored. Lunches and dinners consist of a discussion of the best products for babies or kids, I know this from personal experience. During this time period, I didn’t post much on social media, but if I did, it would be reflective of snapshots of this life: kids everyday, everywhere. Infertility patients are inundated with conversations and pictures of the family life that they hope to have at a time that they don’t have it yet. Sometimes I would complain about the struggles of having a young family and other times I would laugh about it, like when my daughter told everyone at my son’s baptism that she had lice. Either way, I developed a camaraderie with a group of my ‘mommy friends’ who were in the same life stage. We forged strong bonds as a result of learning how to be moms together. We were all attending the same party. How does a patient who is undergoing infertility treatments assimilate in this world?

In addition to social isolation, infertility patients also experience a lack of control. Consider when someone wants to lose weight. They go online, find exercises and diet tips, get a trainer, join a gym, maybe use some people’s own weight-loss journeys as motivation. Theoretically, if you create a calorie deficit, most likely you will lose some weight. Infertility patients can follow all of the rules, do everything that is asked of them, employ experts, and still may not conceive on a timeline acceptable to them. Consider the loss of control and frustration that ensues. It’s inescapable as reminders of other people’s fertility is present at all times of the day. Imagine being immersed in your own fertility journey and attending a baby shower during lunch at work. Considering going home and receiving an invitation to a baby shower in the mail or electronically. Reflect on relaxing at night while perusing social media and seeing picture after picture of women who seemingly conceive with ease.

My hope is that we are all aware that by living and celebrating our daily family life, we are tacitly, albeit unintentionally, creating an environment that isolates infertility patients and is a reminder of the lack of control they are having in their own lives. Of course, I’m not advocating that you don’t post pictures of your kids or your life, that would be unreasonable and hypocritical of me, as I, myself, do this often. But maybe we can use social media, in this case, as a reminder to be compassionate.

I was reading that a way to instill gratefulness into your life is to silently state something for which you are thankful every time you open a door. I’d love for you to consider that every time you post a picture, maybe you say a little prayer or put a kind thought out to the universe (if you’re not religious) for those who are struggling with infertility or pregnancy loss.

October is baby loss and miscarriage awareness month, so I thought I’d share a story with you about how I have been affected by this, both personally and professionally.

At 10 weeks, during my second pregnancy, I was told that my baby’s heartbeat stopped. Of course I was devastated, except that I did have a little nagging intuition that something ‘wasn’t quite right’ with this pregnancy which I had been hoping to disprove.

At the time, there was one sole physician at my practice, and I helped him with office procedures. He was away on a planned vacation, so it was up to me to cover the office. And, just to further add to my misery, my cat had escaped, my dad had received concerning test results and oh, it was my birthday.

I scheduled a D & C on a Friday because I couldn’t miss too many office days. I dropped my daughter off at my friend’s house then headed to the hospital with my husband, who didn’t know what to say, so he kept making jokes until I told him that I would punch him in the face if he didn’t stop. He stopped.

My sweet OB/GYNs (Drs Gennaro and Cahill) were there to do the procedure and, as always, were so kind and awesome. I tried to seem ok with it all, because oddly I didn’t want them to worry about me, and the procedure was uneventful. Once released from the hospital, I picked up my daughter (who was 14 months at the time) and we all headed home where my hubby asked if he could take a quick nap as this was “very stressful” for him (he actually is a great guy, but seriously?)

I returned to work that following Monday and my schedule was ironically crammed with pregnancy scans. I was wholeheartedly happy for all of the patients, as I knew most of them well and was part of their journeys so far, but there was an undercurrent of sadness for my own situation. I bottled up these feelings as they felt too self-indulgent and selfish.

Somehow, I got through that week, with my bottled-up feelings and conflicting emotions until that Friday. That day I did a pregnancy ultrasound on a patient and didn’t see a heartbeat.

We sat in silence for a bit while I searched, and she desperately wanted to hear what I desperately wanted to say. That all was ok. But I couldn’t. Because it wasn’t.

I felt my face get hot, my throat closed up and my eyes welled with tears at the same time that hers did. The words “I’m sorry” got caught in my throat, but they felt so inadequate that I didn’t say them. Her husband wasn’t there and she looked at me and asked if she lost the baby. I said that she had, and she just nodded. Then, eloquently, I said, “This sucks, this just *bleeping* sucks.” To my horror and amazement, she laughed and I cried at the same time. And not girl crying, by the way, but big, runny nose, unattractive, sobbing crying. Eventually, we both did.

They chose to have a D & C the following week, and I visited her in the recovery room and we chatted. She told me that I was so kind and caring, and I revealed what had just happened, as I felt like a fraud. I had used her experience to release my own feelings of loss, and for this I felt both empathetic and pathetic.

Ultimately, she conceived again, and delivered a healthy baby (as did I), and sent me a card thanking me for all that I did. How about that for grace. I’m not sure if I would have done the same if I was in her shoes.

I hear, from my patients and friends, that some clinicians are, well, not so great at delivering bad news and I can tell you, it’s not because they don’t care. It’s because they care too much. I am now actually grateful that I had this negative experience, as it has given me perspective that I tap into every single time I do a pregnancy scan. Now I don’t run from this discomfort, I lean into it. I allow myself to feel and absorb what this patient or couple is experiencing, and try to give them what they need, whether that is talking it through, not saying much, or sitting quietly while she (or they) cry and process the news.

I have also learned that people handle grief differently and no way is the wrong way. My husband tried to diffuse the situation with humor, then gave up and realized that caring for me and feeling what he felt was exhausting. I tried to make myself feel better by trying to make everyone around me feel better until it didn’t work anymore. My patient laughed until she cried.

If you have had this experience, you might have your own way of dealing with loss. And that’s ok. Just please realize that we, as your clinicians, may not say or do the ‘right’ thing, because we feel deeply for you and we handle this emotion in a variety of ways. Witnessing the naked emotion that is expressed when anticipation and cautious optimism becomes grief can be heartbreaking and can make us feel intrusive.

My fervent wish is that, as clinicians, we can learn to see our interaction at this time as a privilege and an opportunity to be the person that you need us to be.

Warmly,

Monica

I’ve had the opportunity over the years to work in a few different fertility clinics, all sizes and in many regions. I’ve also, as a consultant, have been privy the inner-workings of many others and have come to the conclusion that the following factors are important for staff and patient satisfaction at a Reproductive Endocrinology and Infertility (REI) center.

Of course, pregnancy rates are important (and can be researched on the CDC SART website) but that only reflects the outcome of your cycle. Since you will most likely have multiple visits to an infertility center, spread out over weeks or months, and have many points of contact with all of the staff, the quality of your experience while there is also pivotal.

Look out for these five elements when looking for a quality fertility clinic:

• 1) The staff genuinely seems like they like each other.

The importance of staff cohesiveness can’t be emphasized enough, in my opinion. We have all had bad days at work (or a bad day in life and had to go to work) and the camaraderie of your colleagues can go a long way in helping to elevate a bad mood.

How this translates in a fertility center is that a staff that works together at all levels can enhance the patient’s cycle, from start to finish. A fertility cycle requires input from multiple departments (finance, nursing, embryology) at many different points in the cycle(s).

For example, insurance verification is a time-consuming, necessary evil and having a nursing department that is in close contact with a finance department can help facilitate the process of cycle authorization and assure that the patient is capitalizing on what their insurance offers.

Medical assistants who talk to nursing to see if a blood test is necessary in someone who is self-pay or who has a particularly bad needle-phobia are the best kind of patient advocates. Also, staff that are happy to be there are also happy to help and will often go above and beyond their job to optimize their patient’s experience.

• 2) You get a good feeling when you walk into the office.

This is hard to describe, but you know when you feel it (and particularly when you don’t).

Just like your introductory meeting with a person, the first impression that you have in an office is important and often sets the tone for the rest of your visits.

When you walk in, does the front desk address you in a timely, pleasant way? Or are they looking anywhere but at you? Does the medical assistant or nurse who takes your vital signs introduce herself? Do you see lots of smiles and eye contact? Or does it feel like you walked into a rival sorority house when you walk in, i.e. an undercurrent of hostility, unpleasantness, frenetic busyness. Do you feel like you are bothering or interrupting the staff every time you ask a question?

You want to be in a place that exudes positive energy, whenever possible, particularly when you will be undergoing a process that can generate varying levels of stress.

• 3) The office emphasizes general health and wellness.

You are not just a walking uterus and ovaries (let’s not even mention how one could envision the men). You are a whole person. As a whole person, what you eat, do and think can, arguably, affect your fertility.

It would be remiss of any physician’s office not to ask you about your nutrition and lifestyle, and then emphasize non-pharmacological ways to assist you in your attempt to conceive. Kudos to an office that emphasizes the importance of nutrition and extra fist bump for those who have close contact with a nutritionist or, the holy grail, one that employs a nutritionist in the office.

Ask yourself: what do you see first when you walk into the office? Are there seminars and opportunities for small group meetings? What magazines are in the waiting room? Old issues that the staff wasn’t interested in taking home, or magazines that emphasize health and wellness? The waiting room can be a microcosm of the components of care that the REI center finds important, so what you find there is often reflective of what you will experience during your visits.

• 4) The website is robust and has patient education opportunities.

A fertility center’s website is another way to make a first impression, and it can help you decide what the staff thinks is important for you to know.

I have seen websites for big centers that are just a few pages and emphasize only the surgeries the doctors do. They have no real introduction to the rest of the staff or services offered.

In contrast, I’ve seen websites that offer educational articles and videos, links to helpful patient advocacy groups, and offer live-feed Q and A’s with clinicians. Think about the website in the same way you would look for a mate. Don’t make a youthful dating mistake and go for style over substance.

• 5) The physicians rely on current, relevant scientific research in their everyday practice.

The good news about working in the infertility field is that there are so many advances and new techniques. The bad news is that there are consistent advances, and it’s vital to keep abreast of them, researching which ones will have longevity and which ones start as good ideas but don’t work once put into practice.

For example, we weren’t sure that ICSI would be safe for oocytes when it was first utilized, but now we can’t imagine IVF treatments without it. One of the hardest diagnoses to manage and overcome in infertility is that of a diminished ovarian reserve, when the quality (and quantity) of the women’s eggs is low or lessened. Since many of our patients face this diagnosis, much REI research is done to find ways to combat it, since it can’t be “cured” at this point.

Whenever I go into another center, I ask the physicians what they do differently for this subset of patients, and I often am told a variety of methods. Not all may work, but hopefully the physician has researched them, asked colleagues about them, and has gone to an academic conference where it was discussed.

This generates another important point. Good fertility centers promote professional development opportunities for their staff. They are willing to have either an in-house nurse educator or employ an outside consultant to educate and enrich their nursing staff. They are always striving to refine current protocols and standing orders. They send their staff to conferences, both local and national. They support the staff’s efforts at obtaining continuing education units or advancing their degrees. In return, the staff feels valued, which leads to higher morale and better patient care.

Currently the CDC database lists 450+ REI centers in the US that report to SART and offer infertility treatments. The choice of which fertility clinic to use (or in which to work) is a big one and ultimately, like any big decision, one that you will probably make with a combination of information gathering, logic and your gut instinct.

Hopefully, these tips will help you refine your search for the REI center that meets your needs.