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Advising patients after a loss

For our patients struggling with the challenges of infertility, when a pregnancy test comes back negative, or they later experience a perinatal loss through miscarriage, stillbirth, or early infant death, it can be incredibly disappointing and devastating. These individuals and couples are attempting to build a family and this has an emotional impact for all medical providers who partnered in their care.

The feelings and emotional reactions experienced when learning of the loss of a pregnancy and child are often more intense than most people might expect. It is very common and normal for people to feel grief stricken, shocked, vulnerable, depressed, anxious, guilty, angry, and possibly as if they “are broken” and something may be wrong with their bodies that “failed” them. Many couples report that the “naiveté, bliss, and excitement” of pregnancy or attempting conception “has been robbed” from them following news of a failed cycle or pregnancy loss.

Physical healing may be much more straightforward and linear than emotional healing, which may not follow such a time line and can take much longer – possibly days, weeks, months, years, or even a lifetime. Most people who have not experienced perinatal loss often do not realize that this can be a truly life-changing event.

Patients will often explain to others that there has been a divide in their life that defines and describes what their life was like prior to their perinatal loss and how things have now forever changed for them since their loss. Bereaved parents continue to strive to educate and remind providers and others of the crucial need for supportive and exceptional medical care so the magnitude and depth of their grief and the associated feelings can be recognized and understood.

According to the National Centers for Health Statistics, there are approximately six million pregnancies in the U.S. annually and around two million are losses. In 2015, the American College of Obstetricians and Gynecologists (ACOG) released new recommendations on early pregnancy loss. Dr. Jeffrey M. Rotherberg, M.D., Chair of the College’s Committee of Practice Bulletins-Gynecology, reported that these guidelines “will help ob-gyns in better dealing with a common and yet emotionally devastating situation for pregnant women encountering early pregnancy loss.”

Here are some focus points to keep in mind when supporting your patients at the time of their loss and when you meet with them for follow-up and ongoing care.

Acknowledge this perinatal loss to your patient/couple

Offer your condolences. Say you are sorry and check in on how they are doing. You will not further upset your patient by addressing this recent loss as it will be on their minds and they may be offended if conversation about their loss is not initiated. In some instances, patients have shared that no one in their physician’s practice asked how they were doing or acknowledged their loss.

Inform your office staff of this patient’s loss to ensure the staff is not asking how their delivery went, how the baby is doing, or offering congratulations. Most importantly, update your call center/reception staff, medical assistants, nurses, and partner OBs of the loss as patients often share that they needed traumatically to inform the various office staff again and again of their current situation.

Listen to your patient and partners

Let your patients/couples tell you how this is going for them. Sit down to level the playing field. It may not take you as long as you think it will. Remember that each patient/couple may grieve and cope in a different ways and on different timelines. There are a very wide range of reactions a patient/couple have at the time of the news of a loss and the impactful time following. We are not to assume how they are doing.

Some may need to take time and look into some understanding of why this pregnancy did not progress as they had hoped and planned. Some may want to try again soon and hope for a better outcome the next go around and others may need to take a break emotionally, physically, and/or financially. Allow your patients time, the time they need to adjust to this loss. (Adapted from Catherine Lammert-National Share, 1996)

Listen for what this patient/couple call this baby

A nickname, a term of endearment, by name, a baby, a fetus, a son or daughter. Write down that name or term and use it when referring to this loss. It will be meaningful and very noticed by this patient and will respect how they view this perinatal loss. They will also feel heard and validated.

Tears are healthy and acceptable

Don’t be afraid of patients that openly cry. Have Kleenex readily available so you do not need to hunt it down.

Know there is no right way or wrong way to grieve

Nor a specific timetable to follow or orderly stages to progress through following a perinatal loss. Couples may benefit in understanding the normalcy and appropriateness of their grief reactions so they may be able to strategize some potential healthy ways to assist with dealing with these feelings.

Some suggestions for assistance that might be helpful to offer and provide: an informational packet of resources, some referrals to area support groups, referrals to meet with a therapist that specializes in working with couples who have experienced perinatal loss, connecting with others on private blogs or Facebook sites, or doing something significant and meaningful to honor and memorialize the legacy of their child and this loss.

Recognize the importance and meaningfulness of this loss for your patient

This experience may be unique to each person. Understand that the length of time a pregnancy/baby is carried or the amount of time a child lives does not determine necessarily the impact the child has on these parents’ lives. Grief reactions can be just as strong for a patient/couple learning of a negative pregnancy test as a couple experiencing a full term stillbirth.

Honor the meaning and significance of this perinatal loss experience for each patient and couple. Men and women often share that early in their lives they begin to consider and imagine and roles of parenthood and the anticipated attachments to these children they may have in their future lives.

They have their many hopes and dreams for these babies, imagine the family experiences, joys, and challenges ahead, and began to know, love, and plan for the instant they are pregnant, which all can tremendously impact the significance and meaning of this loss of them. Be aware that this loss will now be a part of this patient/couple’s life story.

Be cognizant of significant days

Anniversaries of this loss, date of transfer, anticipated due date, milestones of the age this child would be, birth dates, Mother’s Day, Father’s Day, and holidays as any of these may be emotional triggers for patients and couples. This may be noted at the timing of an appointment or when a next pregnancy is being planned or anticipated.

Be prepared to provide and review postpartum education following a loss

Address the potential physical manifestations of healing: lactation suppression and breast care if a patient is 17wga or further, physical restrictions, diet, bathing, vaginal or perineum care, and review areas of concerns or questions for when they may need to call or check in on their care needs.

Assess for postpartum mood changes

Look for signs/symptoms of post-partum depression/anxiety as it is very common for women to experience profound hormonal changes that may affect their mood and emotions after a delivery. Research has shown that patients can experience perinatal/post-partum depression/anxiety symptoms 10% of the time during a healthy pregnancy and delivery and may be more at risk after a perinatal loss.

Assess for the strong grief reactions that might be present and intertwined within the loss experience. It is very normal to have very strong grief reactions following a perinatal loss, which patients may or may not share with their providers.

Patients/couple may feel their emotions are not well managed and report trouble with coping, sleeping, eating, being unable to concentrate and focus on activities of daily living, work responsibilities, and/or care for other children. If patients are not having immediate emergent concerns, then a referral to a professional counselor specializing in women’s health and perinatal loss would be highly recommended.

A referral to a psychiatrist specializing in women’s health and perinatal/post-partum mood disorders would also be recommended for patients you believe would benefit from medication evaluation, psychiatric assessment, and care. Know your referral base of trained and skilled therapists and practitioners in the field you may refer your patients to, as needed.

Patients and their partners also need to be educated and informed that if patients have more emergent needs—a medical emergency, need immediate care, or are having thoughts of suicide or homicide—a call to 911 or crisis team and medical assessment at area emergency room would be necessary.

When meeting with your patients to prepare for a subsequent pregnancy

Offer a preconception conference, explain the potential course of prenatal care and if there may be any changes or additional care needs, don’t be afraid to address and discuss the prior loss, identify specific fears but don’t offer false reassurances, ask each patient what is helpful to them (and what is not), provide a resource listings of a variety of supports, and refer to mental health providers, as needed. (Wheeler, 2000)

These are all issues to remain mindful and aware of when caring for patients who have experienced a perinatal loss. These issues may resurface at the beginning of a new infertility cycle, when considering a subsequent pregnancy, at the time of a subsequent pregnancy, and following delivery of a subsequent child.

Susan Rizzato, MSW, LCSW is a licensed clinical social worker who brings over nearly 20 years of counseling experience to those that have experienced pregnancy loss, perinatal loss, and the challenges of neonatal intensive care. Her professional experiences in working with extreme grief and loss combined with her personal experiences with infertility allow her a unique understanding of patient needs as they navigate the fertility treatment process.

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