Revelations

**

When I met my mentor, Dr. Bertill, I learned that she had developed a practice in which she managed women with epilepsy who were either pregnant or in the prime of their reproductive years and interested in becoming pregnant.

New drugs are becoming available, and new formulations, developed to minimize side effects and help regulate and suppress seizures. Important for the population of female patients of childbearing age, the new medications are less apt to cause birth defects than those available previously, meaning that women with epilepsy now have the opportunity to have children in a way that would be safe both for them and for the developing fetus.

Dr. Bertill was determined to make it possible for her female patients to start a family and live as normal a life as possible. As a clinician-scientist, she knows how to pose the right scientific questions by identifying gaps and questions that arise within her own practice. In turn, she also can provide patients with the latest evidence and information about their choices and the associated risks for their individual condition and circumstances.

According to Dr. Bertill, those who have epilepsy and manage it well are not proud to disclose it; they fear discrimination.

When it comes to pregnancy, these concerns are even greater, but Dr. Bertill does not see managing a pregnancy with epilepsy any differently than managing one with diabetes or hypertension. In all cases, these patients require medications and doctors need to strike a balance between managing the benefits of the medications, and the risks to achieving the best possible outcomes for both mom and baby.

Laura went in to see Dr. Bertill primarily to get the okay to start trying to conceive. She was already on the safest medications in terms of pregnancy and risk for major congenital malformations, so there was no need to adjust them. However, Dr. Bertill did describe how the dosages of these medications might need to increase during pregnancy. The treatment of epilepsy during pregnancy is a balancing act.

Laura found out she was pregnant on Christmas Eve and called me two days later. She had not been anticipating a positive test. She and Matt did not quite know what to do with the information.

I was honored that she decided to call me and that she felt comfortable enough to share this  information. It was a new role for me.

One thing that I kept running up against over the course of this experience was that of the “third space,” the potential space or distance that exists between the world of our patients—their beliefs, stories, ideas, and homes—and the world of medicine—clinical appointments, observations, and our mentors. Between these two is an uncertain, often amorphous, and constantly changing, space that we, the medical students, occupy.

Living in the third space offered certain benefits and privileged access to both the world of my patient and the world of medicine. It offered the first step into our patients’ lives, and I would leverage the “clinical connection” to ask some difficult questions. But at other times I felt that I was perhaps trespassing beyond the limits of my third space and encroaching onto property that was the patient’s own. All this just as I was starting to grow into my white coat.

As physicians we gain deep access to many aspects of our patients’ lives, and yet, in the end, we must recognize that we are only observers and can never be as closely involved as we may want to be.

**

I felt lucky to be included in Laura’s initial visit to the OB/GYN office where she would have a first ultrasound for the baby and meet her physicians. Because Laura was considered a high-risk mother, given her history of epilepsy and her advanced maternal age, the ultrasound was done at seven weeks rather than the usual time of between ten and thirteen weeks. It was surprising to me that we were able to see the fetus at all when, as the ultrasound technician estimated for us, it was only about the size of a blueberry.

For me, the most amazing part was being able to see the little flutter of the fetal heartbeat. I say flutter because it truly looked like a tiny butterfly, no more than a few millimeters across, that opened and closed its little wings, unfurling them at a remarkably quick pace. I’ve heard that hummingbirds can flick their wings as fast as 40 times a second or so, and I was reminded of this remarkable fluttering as I looked on. The baby’s heartbeat measured 140 beats per minute. Perfectly healthy.

Thinking back on that tiny fetal heartbeat makes me think of the numerous times I have listened to my father’s heart. When I was younger, I loved curling up next to him as he sat on the armchair reading or on the sofa watching television. I would press my ear against his chest and focus all my attention on the regular thump-thump, thump-thump of his heart.

On one of these occasions, I had a significant realization that would somehow affect how I viewed hearts in the future. I realized that his heart and my heart and all the hearts in all the people around me had been beating nonstop since the very first day they came into existence. This was a grand and unparalleled realization, and I remember being not only awed by the truth of this fact but also by the sheer force of the expansive, fleeting wonder I felt.

Seeing the baby’s heartbeat took me back to that moment of wonder. Only seven weeks and already that little heart was pumping away, regular and autonomic.

Of all the classes I took this year, Medical Ethics and Professionalism provided the most insight and relevance to my clinical experience.

Our topic for one of these classes was abortion. We were due to discuss the moral arguments for and against this controversial practice and, in preparation, we had readings and a short essay response to complete. I was curious to learn what the major arguments on each side were and to read true and logical accounts of these arguments.

“Thinking back on that tiny fetal heartbeat makes me think of the times I have listened to my father’s heart. I would press my ear against his chest and focus all my attention on the regular thump-thump, thump-thump.”

As part of the class, we filled out an anonymous survey. Among numerous questions highlighting particular scenarios and options, I remember being asked, How many people do you personally know who have had an abortion? I answered zero, reflecting on how interesting it was that I had comfortably come to conclusions about this topic and about my own feelings and beliefs on it without ever having had to face it in real life. I had not known anyone who had considered or even followed through with this option.

Here is an excerpt from my assignment for that class:

In sum, the rights of all patients—pregnant or not—to bodily integrity and informed consent must be respected, “regardless of the impact of that person’s choices on others.” A woman’s autonomous and fully informed choice, made with the interest of both her fetus and herself in mind, should be upheld whenever it is safe to do so.

Little did I know that just a few days later I would be staring at my inbox, trying to process the shocking, completely unexpected news that Laura and Matt were considering a termination of their pregnancy after so many weeks and months of expecting.

Hi Galina,

Unfortunately, we received some pretty bad news about the baby. Last Monday the test results came back positive for Down syndrome. This has left us with an agonizing and ethical decision to make—whether or not to continue the pregnancy. . . We are also testing to see if this is something I can carry or that will affect any future pregnancies should Matt and I want to try for another baby down the line.

Perhaps we can meet to discuss in a few weeks. It’s still quite painful to speak about and I’m barely holding it together as is. By that time our decision will be made as well and I will be, hopefully, in a much better emotional state. Sorry to delay meeting; I do want to meet, I just can’t right now.

Laura

After receiving the news, I walked around stunned, not knowing how to feel or how to react to the situation. I was strongly affected, but what was I feeling? I could not say. I struggled to understand, and I was afraid at first to ask for help. I was not yet ready to speak. It took a while for me to realize that what I was experiencing was grief and that what I was dealing with was, in essence, my first death.

In the moments after learning about Laura’s results, one of the strongest feelings I had was a real sense of mourning. It was a loss after all, and I could not help but wonder how Laura and Matt were feeling. The termination aborted not only the child but the dreams, feelings, hopes, and experiences it represented and engendered.

I spent almost two weeks in silence trying to process and understand my emotions. I decided to speak first with my father, whom I have often used as a guide and a mentor when faced with circumstances that challenge me to think in new ways. I phoned him and asked him whether he would be willing to listen, not necessarily to advise me or answer my questions but simply provide me an avenue to get my thoughts out and help me analyze them.

My father reminded me that people will make many different choices. As a physician you don’t need to decide for all the people. They are your patients. They are not breaking the law. Your responsibility is to support them, without passing your own judgments.

My father has an analogy that he often uses to describe emotions when he’s advising my sister or me. He says that emotions are like a wave and one must learn to surf on them. Our consciousness is only the surface and below that is a much deeper, more complex subconscious. Sometimes, if the emotion hits us just at the right time and place—and we are ready for it—we may even stand up and surf along. It’s these moments where the emotion can truly drive us and take us somewhere new, further than we have ever been or we ever thought we could go.

I worried at the time about falling to pieces and knew that what I needed was not someone who could discuss the ethics or practices or technicalities of a procedure but just someone who could provide support to me. Without realizing it, this was my introduction to a key component of my professional duty as a physician: balancing one’s own emotions and opinions against the needs, thoughts, and feelings of our patients.

**

It is all too easy to default to one’s own beliefs, but the trick to becoming an open, caring clinician is to be able to solicit and support your patients’ needs at the time of their care, rather than your own. This is not to say that you cannot have feelings in response to a patient’s situation. Our role is to learn to manage our emotions so that we can instead focus on the patient. I should emphasize that managing does not mean ignoring or putting them aside. In fact, it takes real skill, focus, attention, and even mindfulness to be able to tune in to these emotions and get a reading on one’s own body and mind; this can inform our approach to the patient.

We do learn a lot about our patients and about their medical conditions, but we would be fooling ourselves if we thought that we knew everything about them. In fact, it became exceedingly clear over the course of the year that I had gotten to know Laura much better than my mentor ever had a chance to. Dr. Bertill had seen her within the medical context, and Laura’s friends and colleagues had seen her personal and social life, but where did that leave me? Straddling the third space, not quite physician, not quite friend.

Hi Galina,

Matt and I are doing much better. It’s still difficult but I can now talk about it without crying, which is a huge improvement. I’m back at work as well which helps keep my mind off of things a bit. I have an appointment with Dr. Bertill coming up—are you able to attend that? If not, I can see if she can reschedule. I hope you had a good spring break and that you were able to enjoy your time off!

Laura

One of the important pieces of this experience has been developing a relationship over time with Dr. Bertill. I have to admit that when I first met her I was a bit worried about what the experience would be like and whether the two of us would hit it off or not. I was hoping to have a very warm, helpful, and incredibly dedicated mentor who would have time to teach me, explore with me, offer suggestions, and connect me with others. Instead, I found that she, too, had little idea about what we should be doing as it was her first year as a mentor with the program. The boundaries, settings, and expectations were malleable, waiting to be set by us.

What I learned from Laura is that being a patient means being vulnerable, being threatened by something from within or outside of oneself. Perhaps the greatest lesson Laura demonstrated was that being vulnerable did not mean that one was helpless or that one had to be passive.

Laura was really the first patient I met who had read about her condition on the internet. She had researched all her providers and made a choice about which physician to visit based on online recommendations and expertise. She had the confidence to seek the best care for herself and also the competence to navigate the health system and find and demand excellence. I was impressed by this and that Laura did not allow her illness to possess or overwhelm her.

Laura and Matt invited me for a visit to their home in a suburb outside of Boston on the second weekend in May.

I brought along some chocolate for us to share and Laura had lovingly put out a mixed platter with sliced baguette, homemade green bean and avocado paste, and a fresh slice of brie she had picked up from the local grocery store. Today we would not only be sharing histories, sharing opinions, or sharing stories, we would be sharing that most fundamental of activities that bring two people closer—we would be sharing a meal.

In my last meeting with Dr. Bertill, we reflected on how this experience had been for each of us over the past year—the ups and downs of treating and spending time with Laura—and both the expected and unexpected outcomes of participating in this course.

Dr. Bertill believed that taking on a professional role was part of her responsibility to the patient. She wanted to demonstrate expertise, confidence, and competence so that the patients, too, could feel that they could rely on her as a physician, that they would have confidence in her, and feel their care was in the right hands.

It is hard to instill confidence if you are susceptible to your emotions, however. Dr. Bertill said, “When you sit with your patient, you must listen wholeheartedly, but you must also remember that you have another roomful of patients waiting for your help.”

You cannot let yourself empathize so strongly with one patient who leaves you empty and incapable of helping the next one. I think the balance between sympathizing and holding my emotions back is one of the lessons that has been hardest for me and that I anticipate I will continue to struggle with throughout my training. I learned during this experience that sometimes our own emotions in a situation are unpredictable.

As we wrapped up our final meeting, I asked Dr. Bertill if she had any words of wisdom to impart. She said, “What I’ve learned is that every patient is so different. You cannot predict a patient’s response, especially when they are faced with a difficult medical situation that is scary or concerning to them. Some of the women in my clinic come in and they are just scared and worried. Others are cool as a cucumber. But all of them are our patients, and our role is to be sensitive to their specific needs, whatever they may be.”

Be sensitive, be helpful, and tend to the needs your patients express. This is both the simplest and the most difficult thing—and it is what we physicians must learn to do.

Galina Gheihman is a member of the MD Class of 2019 at HMS. This essay, titled “Heartbeats,” appeared in The Soul of a Patient: Lessons in Healing for Harvard Medical Students, a compilation of student essays edited by Susan E. Pories, MD; Samyukta Mullangi, MD ’15; Aakash Kaushik Shah, MD ’16; and Mounica Vallurupalli, MD ’13. The names of the patient and the physician/mentor in the essay have been changed, and the piece has been edited for length. It appears with permission from the publisher, Gordian Knot Books/Richard Altschuler & Associates, Inc., Los Angeles, California (www.richardaltschuler.com).

Images: John Soares