Helping patients know when ‘enough is enough’

“Treatment is difficult enough; knowing when to stop is even harder. There are always more ‘carrots’ that the medical world dangles before us. We could keep trying forever or until our money or mental health runs out.”

Any professional working in the field of infertility has watched couples continue treatment even when sensing that it is futile. If there is a definitive diagnosis or a conclusive finding, it is easier to help patients move on, to consider other family-building options or choose to be child-free. These steps are far more challenging in cases of unexplained infertility, in cases in which initial response has been good but no pregnancy results, or when there is an early pregnancy loss. When do you close the chart and say, “There is no more I can do for you; it is time to move on”?

The patients' inability to “move on” may be the very reason they are staying in treatment. They may be afraid of what lies ahead; they may not want to face the grief that will come when they stop trying to have their own child, or partners may disagree about how to proceed, or about which options to pursue. One or both partners may have difficulty expressing individual needs.

When ending treatment, couples must address the grief and loss of not having a genetically linked child and of not experiencing pregnancy. Confronting the losses of infertility can frequently trigger grief from previous losses. Individuals can feel overwhelmed and surprised by the intensity of feelings that may resurface about losses experienced years ago.

View Large Image Download to PowerPoint

Fig 1.

“I felt like I was grieving so many things; my father who died three years ago and now this. This loss felt so different because there was no body, no funeral, just the death of our dreams.”

For many couples, ending treatment may mean disappointing family members. There can be subtle—and not so subtle—pressure on couples to “continue the family line.”

For some couples, walking away “empty-handed” after all the struggle and money spent on infertility treatment feels intolerable. For the couple (or individual) used to being in control of their life, saying “enough is enough” is daunting. They may have successfully met other difficult challenges with hard work and persistence, so being unsuccessful with infertility treatments may feel especially defeating.

Another unique and difficult aspect of this decision is that one person is not making the decision, but usually two. One may be very battle-weary while the other may want to keep going. In some cases one partner may stay in treatment to avoid disappointing the other. Another reason some couples stay in the medical arena is that they cannot agree about what to do next. If one partner wants to adopt or remain child-free and the other does not, they often try “one more” cycle and hope they don't have to make that decision.

How can you help your patients and clients with this difficult decision? 

•It is important to frequently ask your patient how he or she is doing, in terms of his or her stamina to continue, because resolution is a constantly changing process. It is also important to find out if they, as a couple, are in sync. Be specific; ask, “How is you partner doing?” Or ask, “Are either of you feeling the need to stop treatment?”

•Help the couple develop a plan and a backup plan. Even though they may not pursue Plan B, it gives them a chance to consider options and take some control.

•Assess the risk and the benefit of each step—emotionally, medically, and financially—with both partners.

•Encourage your patient to keep a list of pros and cons about continuing in treatment, stopping treatment, or considering other family-building options, including child-free living.

•Remind your patients that infertility treatment is elective and that, age permitting, it is often helpful to take a break from treatment and see how it feels. Feelings of relief, that they are getting their life back, may be indicative that they are nearing the “enough is enough” stage. On the other hand, feeling anxious to resume treatment can indicate that a couple has a high energy reserve for pursuing more treatment.

•Some couples need reassurance that stopping treatment will not disappoint the doctor or the medical team. Many couples develop an emotional bond with the medical team and highly value the positive outlook and enthusiasm that the doctors and nurses have given them over the course of what may be years of treatment. They may not want to disappoint you by saying that they are stopping treatment.

“My wife and I kept postponing telling our doctor that we were stopping treatment and adopting. He had been so sure everything was going to work out and that he could help us get pregnant. We felt like the whole office was our cheering squad; we hated to disappoint them.”

•It is never helpful to say to a patient, “We will have you pregnant in a few cycles.” It does not create space for them to say, “We want to stop; we don't want any more treatment.” It may make the patient feel that it is their fault that they did not get pregnant and doesn't acknowledge that the field of infertility doesn't have all the answers.

•Because the decision to stop treatment is so difficult, it is helpful for you to suggest that a couple talk to an infertility counselor for a few sessions to sort out the decision. This reduces the stigma some patients associate with counseling, and eliminates the need for them to admit they need help. It is best to put the suggestion in the context of “I suggest this to all my patients at this stage in their infertility struggle.” Giving the couple the names of several therapists, without them having to ask, is very important as well.

•Suggest that your patients use resources available to talk with other patients who have moved on from treatment to resolution.

•By providing information in your waiting room on various family building options, including donor egg and sperm, adoption, child-free living, surrogacy and embryo donation, it sends the message that your goal is to help a couple or individual struggling with infertility find the right individual resolution. Hopefully it will be through successful medical treatments, but if not, your patients should have information on all the options available to them.