As you are undoubtedly aware, the whole area of patient relations is complex. We all know that every single IVF center has had its share of complaints. No doubt, you’ve dealt with the distraught, angry, scared, worried or disappointed patient. However, The AFA hears directly from tens of thousands of people about their observations, experiences, their highlights and disappointments in the world of ART. There are things we hear so often from so many different quarters, that we know they aggregate into issues that can ­ and probably do—have an impact on your practice. Some of the fallout is obvious, such as patient retention rates. Others are so subtle, they might escape your notice, unflattering chatroom exchanges spring to mind. In the suddenly small world of online reproductive medicine patient interaction, word gets around.

The AFA reviews and analyzes the material it culls from listening to our membership base, from reading their posts, from speaking with them on our hotline. We spot trends in patient satisfaction and dissatisfaction. When we see something significant, our job, in part, is to share it with you. It is our job to bring to your attention the issues that have risen to the surface and then help you go deeper to understand what underlies them. In partnering this way, we will be able to help you affect the whole treatment environment, from staff response to patient satisfaction, from physical support to plant.

The Launch

For the inaugural issue of “Professionally Speaking...,” we’re taking on a topic that dogs many practices as well as patients: Quitting.

What makes people abandon ART? What provokes people in the midst of treatment want to quit their marriages—maybe not divorce but quit their marital beds? How do you as professionals help couples address these issues so they can stay the course, have the children they so desperately want, and stick together to raise them?

Andrea Braverman, PhD, psychologist extraordinaire, writes to the first point: the reasons patients pack up their gonadotropins and call it a day. In revealing the complex constellation of factors that come into play, Braverman points the way to soothing these ragged souls and keeping them on the right path.

Taking on the homefront, Dr. Machelle Seibel discusses the sexual stressors that further weaken the couple gamely trying to face down their reproductive demons. He describes the pressures and the fissures, the way patients are almost forced to separate sexuality from reproduction—to their detriment.

As if the poor sod didn’t know that well enough.

The point is, the man was simply trying to humanize a situation that made him—and his partner—feel more like machinery than people. The doctor’s response was a three-for-one. It deflated both husband and wife, but shamed them, and alienated them from the practice.

I’m not suggesting that a full-out burlesque review was in order. But it might go a long way to propping up these vulnerable people if they felt that their medical team understood and saw them as something more than their reproductive parts. It is important to respect and encourage the intimate connection, the “glue” as Seibel calls it, that made them want to have children together in the first place.

With this first issue, The AFA wants to forge an information alliance that helps you find ways to truly support patients. And, we hope that through this support that you engender your patients’ loyalty regardless of their outcome. We'll all be the richer for it.

Pamela Madsen

Why Do Patients Terminate Treatment?
By Andrea Braverman, PhD

There is an emerging literature that suggests that patients terminate treatment due to a complicated set of emotional reasons. Setting aside the obvious reasons for termination such as treatment conflicting with personal or religious beliefs or for financial limitations, reasons for terminating treatment prior to achieving a pregnancy and delivery have more to do with stress management, perception of the treatment burden, and level of optimism. Patients will also terminate treatment if they do not feel that the physician or practice is supportive or encouraging.

There are many factors that contribute to an individual feeling that s/he is getting the best and individual treatment. Often when patients feel disenfranchised from their doctor they are less invested in treatment. Having a system for contact for the office to follow up is an essential way to promote a sense of support and concern from the office. Having written support materials also can address concerns that may arise and diminish time demands on the doctor and staff.

Infertility treatment carries many unique burdens but none as heavy as the emotional toll.  The monthly cycle of hope and disappointment often leaves the patient exhausted. Many individuals find that their partners may have very different coping styles. For example, if one partner finds that discussing the impact of the infertility and its treatment is helpful and the other partner finds these discussions frustrating or negative, the couple often falls into a negative cycle of pushing and retreating.  Treatment is stopped when one partner wants to avoid the negative cycle and arguing or incrimination that can follow.

The feelings of infertility (anger, sadness, poor body image, loss of sexual intimacy, etc.) coupled with the difficulties of living in a fertile world populated with pregnant friends, family members and colleagues also leads to exhaustion and pessimism. Having good patient support can help them manage these feelings and not just avoid them; this avoidance may also lead to avoiding the treatment which elicits these feelings. Avoidance also can lead to isolation and the isolation can precipitate termination.

The importance of preparing a patient for treatment, whether it be insemination or IVF, cannot be overstated. Aside from contributing to the sense of being more in control, preparation gives the patient opportunity to gather their support resources. This may be as simple as being able to anticipate work demands and schedule or prepare ahead for treatment. Preparation also means setting expectations. Patients often assume that if a treatment was truly going to work then the cycle would have been successful.  Having the preparation of knowing what a fair trial is for any given treatment will also give better coping skills. For example, patients often will not schedule any

Patients do reach the point where they feel “enough is enough”.  As a health care provider, allowing the patient to tease out the point where they feel satisfied that they have attempted enough treatment within their own personal needs and values will lead to the patient feeling that s/he has navigated treatment successfully. There is no magic to the number of attempts or types of treatment that will give that satisfaction but it is clear that terminating treatment to avoid uncomfortable feelings may lead to poor resolution of the feelings and decision-making. 

Patients terminate treatment for good reasons and bad. Providing information, support and communication from the physicians and staff will promote the best decision-making for patients as they navigate the intrapersonal demands that treatment delivers.

Dr. Andrea Mechanick Braverman, a world-renowned psychologist and specialist in infertility-related counseling, is the director of the Complementary Care Program at RMA.  She also serves on the Board of Directors of The American Fertility Association.

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SEX IN THE TIME OF INFERTILITY
by Machelle M. Seibel, MD

On occasion, sexual dysfunction can be a cause of infertility. Couples find they have sex so infrequently that it becomes a barrier to conception. But it is much more likely that sexual dysfunction is the result of infertility. The following discussion will highlight at what points in the evaluation and treatment that sexual function is most likely to occur.

Male Sexual Problems and Infertility:  
Temporary impotence is a common problem in male infertility patients. It may occur surrounding a scheduled post coital test or the collection of semen analysis.  It is  often necessary for a man’s partner to help him collect the sample. In some cultures, masturbation is either prohibited or frowned upon, and those situations, temporary impotence is so common that it is expected.  Usually, if patients realize that on occasion it is common, the problem goes away. The greatest tendency for temporary impotence comes with procedures such as in vitro fertilization when the man’s only “job” is to produce the sample. The pressure on men is often significant. For this reason, I recommend men freeze a sample of sperm prior to these procedures. This accomplishes two things: first it takes the pressure off. Second, just in case the stress of infertility reduces sperm count lower, there is a better sample available. 

Ideally, the fertility center will have a special room set aside for semen collection other than public rest rooms.  It is also helpful to have locks on the doors that say visually on the outside of the door that the room is occupied. This prevents others from knocking on the door which can cause anxiety and loss of erection.  Writing your name on both top and bottom of the cup also reduces anxiety that the sample might be confused with someone else’s.

Some men can only collect a semen sample during intercourse. If that is the case, there are special condoms available to use for this purpose. They differ from those bought at drugstores because they do not contain lubricants or spermicides that could be harmful to sperm motility. If the male partner’s sperm count is so low that donor insemination is needed, he may feel responsible for the couple’s infertility and experience decreased desire or impotence. If impotence occurs more than occasionally, be sure to discuss this with your patient to determine if treating the problem is necessary.

Desire may also be reduced in women who must time intercourse either for conception or for post coital testing. The shift from “making love” to “making babies” is one of the commonest causes of female sexual dysfunction. It may also cause vaginal dryness because sex is performed to “get the job done” rather patiently and unhurriedly. Identify a lubricant that is not harmful to sperm. To help prevent dryness and loss of desire from happening, it is helpful to plan intercourse for times other than when they are trying to conceive. This takes the focus off of the conception process and allows for intimacy and closeness.

Women who have experienced a miscarriage after working so hard to conceive are understandably sad and may avoid intercourse or have sexual problems. It is often helpful to suggest mental health counseling after a miscarriage to help process the loss and reduce the risk of having a pregnancy loss cause a loss of sex as well.

Some women have painful intercourse as a result of endometriosis or pelvic infection, either of which can be a cause of infertility. 

Couples Sexual Problems
For some couples, conception can be a time of sexual difficulty. Because the pregnancy has been so difficult to achieve, many couples avoid intercourse for extended periods of time. Some avoid sex for the entire pregnancy. Unless there is bleeding or a particular problem, it should not be necessary to avoid sex following conception for an infertile couple any more than it is for a couple having no difficulty conceiving.

Conclusion
Sex is believed to be evolutionary “glue” that keeps couples together for long periods of time so that they will bond and be available to raise the children they create through the long dependent period of childhood.  When pregnancy does not occur and sex becomes only a physical act for the purpose of conception rather than an act of pleasure, individuals and their relationships suffer and sexual problems commonly follow. Making time for intimacy outside of the period of ovulation, and seeking counseling early in the infertility process can help minimize the toll that infertility can take on sexuality.

Machelle M. Seibel, MD is a Professor of Obstetrics & Gynecology
University of Massachusetts Medical School
Memorial Campus, 119 Belmont Street, 4th floor
Worcester, MA 01605

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