Difficult Fertility News Calls for Respecting Individual Experience

Years ago, Elliott Richards, MD, attended a grand rounds meeting in which a maternal-fetal medicine specialist shared the case of a patient whose fetus was so active that her obstetrician initially believed she was pregnant with twins.

“Every time her initial provider performed a sonogram, a second ‘twin’ was seen,” Dr. Richards says. “Later in the pregnancy there was a scan where they couldn’t find the second baby, and her case was referred to this higher-level provider. This second provider put the pieces together and had to break the news that there was only one baby. There had only ever been one baby.”

The story has stuck with Dr. Richards, Cleveland Clinic Director of Reproductive Endocrinology and Infertility Research, because it illustrates what difficult news can feel like in the world of fertility medicine.

“Even though they didn’t experience a loss physically, these parents deeply mourned the loss of a twin that never existed,” he said. “It is not unlike what many of my patients experience when they face infertility: deeply mourning a vision of their future family that has not — and may not — be realized.”

Dr. Richards is among five physicians interviewed for a Consult QD series on delivering difficult news to patients. Regardless of specialty, loss is a common denominator for those receiving unwelcome news about a dire diagnosis or results of new tests or treatments.

As the “twins” example shows, the particulars from one field to the next can be quite different — if no less profound.

“When medical students are presented with the topic of ‘delivering bad news,’ they probably think about disclosing a terminal cancer diagnosis, not discussing infertility,” says Dr. Richards. “But studies have long shown that infertility leads to psychological effects, including anxiety and stress, that are comparable to chronic conditions like cancer.”

Difficult fertility news

Within fertility, examples of difficult conversations include:

• Lack of viable sperm, eggs or uterus. “This type of diagnosis can be unexpected, and it may have profound implications for other aspects of their health, their own perception of self, and how they approach current and future relationships,” says Dr. Richards. Options for family building may require difficult, complex decisions involving third parties such as sperm or egg donors or gestational carriers.
• Delayed childbearing. “There can be hard conversations about the low likelihood of success in women seeking fertility treatment in their late 30s and 40s,” says Dr. Richards. “Patients may feel blindsided, completely unaware of age-related decline in egg quality and quantity.”
• Recurrent pregnancy loss. “This condition can be particularly traumatizing,” says Dr. Richards. “Going through the loss over and over can lead patients to feel that they are never safe throughout any point in any pregnancy. To add insult to injury, oftentimes a thorough workup doesn’t reveal a clear reason for their recurrent miscarriages.”

People who have not experienced infertility don’t always understand the emotional toll it takes. And the experience of infertility is not universal.

“While my personal experience with infertility might allow me to relate to my patients on some level, having personal experience is not necessary for empathy,” says Dr. Richards. “In fact, it’s important that we as clinicians not project our own perspectives and feelings onto patients so that we remain sensitive and open to their unique life experiences.”

Reactions from friends and family members can add to the suffering of patients with fertility challenges.

“It is a common refrain from my patients. As soon as they disclose to friends about their troubles, everyone is suddenly an armchair fertility expert,” says Dr. Richards. “They are told, ‘you just need to relax, you just have too much stress.’ This unsolicited advice may be deeply harmful for the patient. Of course, friends and family members are usually coming from a good place, so patients also don’t feel like they can ask them to stop. This phenomenon probably occurs more with infertility than any other medical diagnosis.”

When he has difficult news to discuss, Dr. Richards says, authenticity and empathy are critical, and solutions come through shared decision making with the patients.

Because infertility problems are rarely black and white, he will often start by going over the imaging, lab results and other tests with patients so that they have a framework and context for the difficult news. When the specific problem is relatively straightforward, such as an abnormal semen analysis, this information is addressed first to minimize the patient feeling blindsided or waiting impatiently for the bad news they might already be expecting.

This approach of reviewing the workup together demonstrates to patients that he has thought through their specific case carefully. This builds trust, and it allows him to gauge their understanding along the way and further tailor his message.

Once the difficult news has been reviewed and fully grasped, extensive counseling and education empowers the patient to take part in shared decision making for next steps.

“When faced with bad news, patients want hope and solutions,” says Dr. Richards. “It can be a delicate balance between providing hope and being realistic. In almost every case, there is still something that we can do, and it is important that patients understand the likelihood of success and the risks of each option. In some cases, we have had remarkable success stories against all odds. In other cases, we haven’t, and I’ve had to help patients adjust their vision of family-building through alternate means like use of adoption, gestational carriers or donor eggs.

“I have to be very careful not to give false hope,” Dr. Richards adds. “And in these extremely difficult cases, I have to recognize the limits of my training and know when patients will benefit from seeing a counselor trained in fertility care.”

Benefits of bringing on good counselors

Dr. Richards works with a small team of compassionate therapists who have experience with fertility-related issues. Therapy can help patients gain a sense of agency for shared decision-making about next steps.

“Sometimes, even when the prognosis is very poor, patients can find it difficult to stop aggressive fertility treatment,” he says. “It can be extremely helpful for patients to have a third party who is not their fertility doctor and who can help them work through questions about whether it makes sense for them to continue on the current path or to transition to another goal.”

While difficult news conversations are sometimes very hard, they also can be a gratifying part of caregiving.

“Any feelings of burnout as a doctor that I have felt in the past have never been from these conversations, because in these difficult moments we are sharing a human connection,” he says.

“Happiness and fulfillment can come even after a devastating diagnosis like infertility,” says Dr. Richards. “For patients who ultimately are not successful in having biological children, there will almost always be pain, yet beyond the pain there is so much in their lives that is beautiful, wonderful and fulfilling.”