PERINATAL LOSS includes neonatal death, miscarriage, and stillbirth. How nurses and other healthcare professionals care for families suffering a perinatal loss can have far-reaching consequences, as the experience of Susan and Jason* illustrates.

In her second trimester (16th week of gestation), Susan experienced heavy vaginal bleeding and severe abdominal cramping. Her husband, Jason, called 911 and they were transported in silence to their local ED, where a pelvic examination and pelvic ultrasonography were performed. Their nurse, Janet, administered medications and told them that everything happens for a reason.

In a flurry of activity, Susan felt something removed from her body as she involuntarily pushed. Jason saw a small, gray piece of tissue whisked away in a bowl. The room was cleaned and the equipment was put away. Janet came in every so often to check Susan's vital signs and assess her for bleeding, but she kept her eyes lowered and rarely spoke.

When Susan was stable for discharge, Janet handed them a folder containing information about miscarriage. As they were leaving she said, "At least it was early in your pregnancy. You can have another." Susan felt alone and heartbroken.

Susan went on to have a successful pregnancy a few years later, but she was consumed with fear and anxiety every day of her pregnancy. After her daughter was born, she experienced severe postpartum depression. Her relationships with her husband, family, and friends suffered as she felt more and more isolated.

A few years later, pregnant for a third time, Susan found herself in the OB triage area 3 weeks before her due date. Although she'd experienced a complication-free pregnancy, her deepest fear had become a reality. Removing the ultrasound probe from her abdomen, the physician softly said, "I'm sorry. There is no heartbeat. Your baby has died." As she prepared for the induction of labor, she had flashbacks to her second-trimester miscarriage.

Information, choices, support

However, Susan's second experience with miscarriage was vastly different from her first. As she prepared for the induction, she was supported by the staff and given information, choices, and the opportunity to make positive memories that could help her through her grief. Through each step, Susan and Jason were involved in planning their care with the healthcare provider and their nurse, Terry. They were offered immediate access to a social worker and spiritual care.

Susan and Jason named their daughter Leigh. Their caregivers gave them unlimited time with her as a family. Terry suggested that Susan and Jason bathe and dress Leigh in newborn clothes, as this would be their only opportunity to physically "parent" their daughter. With the parents' permission, a professional photographer took pictures of the family together. Susan was given up-to-date information on local and national support groups for bereaved parents and perinatal loss. Staff from the hospital followed up with Susan after her discharge to assess her postpartum recovery and lactation support needs. Susan chose to pump and donate her breast milk to a certified local breast milk bank, a decision that had a healing effect on her. Although nothing could take away the devastating pain of Leigh's death, the support she received made a positive difference in the grieving process for Susan and Jason.

Lasting effects

Research shows that women who've experienced a perinatal loss are more likely to experience posttraumatic stress disorder, anxiety, depression, and sleep disorders, which can in turn profoundly impact future pregnancies and parenthood.1 Additionally, perinatal loss heightens conflicts within marriages and increases the likelihood of separation or divorce.2

Palliative care interventions such as patient and family support and education can help reduce emotional and psychological trauma and promote healing. Many hospitals have developed perinatal palliative care programs and bereavement programs to support families making difficult decisions.

Whether working in a facility with such a program or not, all nurses can provide palliative care for families faced with perinatal loss. Many parents reflect on their experience in the hospital with regrets that the hospital staff had many "missed opportunities" to support them.3

Tips and guidelines for nurses

To support families experiencing perinatal loss, implement these best practices for perinatal palliative care.3-5

* Call the baby by name and follow the family's lead on the language that is used surrounding the death. For example, avoid using phrases such as "passed on" unless the family uses it first. The language used with the family is critical and can have a great impact on how a parent grieves.

* Allow space for silence. A frequent misconception is that something should be said to "make it better," but these statements can be extremely hurtful to families. Avoid statements such as "everything happens for a reason," "you can always have another," "God knows what's best," or "at least you have a child at home." However, sincere condolences such as "I'm so sorry for your loss" may be welcome and helpful. Affirmations of the devastation and difficulty of the situation are also appropriate.

* Don't be afraid to show emotion about the baby's death. It's okay to cry, but recognize when it's best to step out for a moment if you're too upset to support the family.

* Give the family time to review the options they have and actively involve them in the decision-making process. For example, ask if they'd like a photograph of the infant or a lock of hair. (See Making memories.) You may need to ask them the same questions several times. Don't make any assumptions about what they may or may not want in the birth or postpartum period, and don't impose your values or prior experiences with loss on the family.

* When the mother is being discharged, encourage her to take items that had been with the baby, such as blankets, hats, or clothing. Don't assume that the family doesn't want these items, even if they're soiled. These tangible reminders can help parents work through their grief.

* Keep current information on hand about local perinatal loss support groups or bereaved parent groups. Many parents say that one of the most important ways to reduce the feelings of isolation after a perinatal loss is to meet in person with other parents who've had similar experiences. In addition, share information about national organizations or online support communities. (See Where to turn for help.)

* Ensure follow-up with the family after discharge to reinforce discharge teaching about postpartum care, lactation, and local grief support resources.

Nurses have a deep and lasting impact with families experiencing pregnancy loss like Susan and Jason. With dialogue, training, and continued education in the areas of pregnancy and infant loss, nurses can create environments that support families as they begin the grieving process. Such an investment in perinatal loss support is fundamental to compassionate and evidence-based patient care.

REFERENCES

1. Hutti MH, Armstrong DS, Myers JA, Hall LA. Grief intensity, psychological well-being, and the intimate partner relationship in the subsequent pregnancy after a perinatal loss. J Obstet Gynecol Neonatal Nurs. 2015;44(1):42-50. [Context Link]

2. Gold KJ, Sen A, Hayward RA. Marriage and cohabitation outcomes after pregnancy loss. Pediatrics. 2010;125(5):e1202-e1207. [Context Link]

3. Cacciatore J, Bushfield S. Stillbirth: the mother's experience and implications for improving care. J Soc Work End Life Palliat Care. 2007;3(3):59-79. [Context Link]

4. Guidelines for health care professionals supporting families experiencing a perinatal loss. Paediatr Child Health. 2001;6(7):469-490.

5. Tan JS, Docherty SL, Barfield R, Brandon DH. Addressing parental bereavement support needs at the end of life for infants with complex chronic conditions. J Palliat Med. 2012;15(5):579-584. [Context Link]

RESOURCES

Heustis J, Jenkins M. Companioning at a Time of Perinatal Loss: A Guide for Nurses, Physicians, Social Workers, Chaplains and Other Bedside Caregivers. Fort Collins, CO: Companion Press; 2005.

Davis DL. Empty Cradle, Broken Heart: Surviving the Death of Your Baby. Golden, CO: Fulcrum Press; 1996.

Making memories

After a perinatal loss, memory making is important. Pictures, taken either informally or through an organization such as Now I Lay Me Down To Sleep (http://www.nilmdts.org), can help the family for years to come. Other ideas for memory making are cutting a lock of hair and making hand and foot prints in clay or ink. Some families will give the baby a stuffed animal or piece of jewelry, keeping a duplicate for themselves.

This is the only time the parents will have to physically "parent" their baby. Encourage them to spend time bathing or dressing their baby, performing any religious or spiritual rituals that comfort them, reading together, singing songs, or playing meaningful music. Suggest inviting other family members to meet the baby.

Where to turn for help

* Resolve Through Sharing Bereavement Training http://www.gundersenhealth.org/resolve-through-sharing

* Share Pregnancy and Infant Loss Supporthttp://nationalshare.org

* March of Dimes http://www.marchofdimes.org

* Stillbirthday http://www.stillbirthday.com

* Now I Lay Me Down To Sleep http://www.nowilaymedowntosleep.org

* Names have been changed to maintain confidentiality. [Context Link]