When Death Precedes Birth: Experience of a Palliative Care Team on a Labor and Delivery Unit

Introduction

While the vast majority of recognized pregnancies result in the birth of a healthy baby, rates of stillbirth (that is the death of a fetus after 20 weeks gestation) remain surprisingly high. The Centers for Disease Control and Prevention report that there are approximately 26,000 stillborn babies each year in the United States. ¹

Several maternal demographic features correlate with higher fetal mortality rates. Teenage mothers and women over 35 years of age are more likely to experience fetal mortality. Race is also a factor, as non-Hispanic black women have twice the fetal mortality rate of non-Hispanic whites. Fetal mortality is more common among unmarried women (37% higher for unmarried versus married non-Hispanic white women and 9% higher for unmarried versus married non-Hispanic black women). Additionally, twin and triplet pregnancies carry higher mortality rates than singleton pregnancies (2.7 and 5 times higher, respectively). ¹ These characteristics may lend themselves to heightened grief reactions, since many women who experience fetal demise are young women (who may have less developed social support systems) older women (who have fewer fertile years to pursue another pregnancy), and those who may have required reproductive technology (who have struggled to become pregnant). ¹

For women who experience a stillbirth, suffering may be physical, emotional, spiritual, and social. The psychological effects include depression, protracted grief, suicidality, anxiety, and posttraumatic stress disorder.^2–5 Social implications include isolation, dissolution of marriage/cohabitation, and strain on familial relationships. ⁶ The perception of support, lack of support, or missteps of a health care provider at the time of fetal demise may impact the grieving process and can have a lasting impact on the family. ⁷ In a literature review of bereaved parent recall of interactions with health care providers after perinatal death, dissatisfaction strongly correlated with a perception of lack of communication between staff members about the death, staff avoidance behavior, lack of emotional support or insensitivity, and blaming caregivers for the loss. ⁷

Clinicians have the opportunity to address the psychosocial impact of fetal demise by managing physical symptoms, providing appropriate communication and encouraging the emotional support and tangible evidence of the baby's existence to minimize ambiguous loss that can occur when the loss is felt but not physically confirmed. ⁸ Studies have shown that labor nurses are generally comfortable caring for families, but find it difficult to provide perinatal bereavement care. ⁹ One author remarked, “Interdisciplinary bereavement teams addressing perinatal death at hospitals may ameliorate somatic distress and relieve hostility in grieving mothers.” ⁵

Bereavement support is typically provided by chaplains, social workers, or counselors, service lines that may not be readily available in all hospitals. It is estimated that 54%–64% of U.S. hospitals have chaplaincy services. ¹⁰ Child life specialists can provide developmentally appropriate psychosocial support to children who are affected by a familial fetal loss. Unfortunately while most U.S. pediatric hospitals employ child life specialists, they may not be available in adult acute care settings.^11,12 Over the last decade there has been exponential growth of hospital-based palliative care, from 24.5% of hospitals reporting the existence of a palliative care team in 2000 to 63% in 2009. ¹³ Thus, interdisciplinary palliative care teams working in the acute care setting may fill a distinct need for specialized acute grief support in the setting of perinatal death.

Clinical Experience

In July 2010, we began an interdisciplinary palliative care consult service in a 540-bed urban academic tertiary care hospital. Although we provided extensive education on medical and surgical floors, no information, marketing or education was specifically provided on the labor and delivery unit where approximately 2000 live births are performed annually. Less than 1 month later, we received our first consultation for supportive care for a woman experiencing fetal demise.

A 37-year-old woman (G2P11) experienced fetal demise at 36 weeks gestation with a singleton pregnancy. The palliative care social worker and chaplain took a social history that revealed that the patient fled her home country 3 years prior for “political reasons,” leaving her family, including her 7-year-old son behind. When she learned she was pregnant, her family, whom she described as “traditional, conservative and very religious,” encouraged her to terminate the pregnancy as the father was not her current husband. Her decision to continue the pregnancy led to the dissolution of her marriage. The patient reported that several family members viewed the stillbirth as “punishment.” Therapeutic presence and acknowledgment of her loss fostered rapport, and the patient shared her experience of pregnancy and delivery. The chaplain offered scripture references with themes of love and forgiveness to offset the blame placed by her family.

Assessment of the patient's loss history and support system are essential, as this information helps identify the potential for complicated grief. ⁵ In addition to comprehensive assessment, acute intervention for bereavement support focuses on normalizing and validating expressions of loss, to alleviate the under-recognized burden of grief for women who experience a perinatal death.

The following additional cases exemplify how the palliative care team provides interdisciplinary support for patients, families and staff in this setting, where we continue to be consulted for an average of 3.5 patients per month.

A 20-year-old unmarried woman (G1P0) delivered a nonviable fetus at 20 weeks gestation and returned to the hospital 3 weeks later to collect the fetal remains after autopsy. When presented with the remains, she became emotionally distraught and was admitted to the labor and delivery unit for observation. The patient was accompanied by her mother, who requested to meet with the obstetric team. The palliative care social worker participated in a family meeting in which the obstetric team addressed their questions about the pregnancy and delivery. The patient was emotionally withdrawn, with a flat affect. She repeatedly stated, “My baby is in box.” In contrast, her mother presented as tearful with grief manifesting as anger.

Returning to the site of the loss and the physical evidence of the fetal death appeared to have triggered an acute stress reaction. The palliative care social worker engaged the patient by acknowledging her loss and validating her sadness. With therapeutic presence and active listening, the patient began to express grief and became tearful. Familial and social supports were identified, while a referral for outpatient bereavement counseling was made to meet present and future emotional needs. For the patient's mother, better understanding of the clinical situation minimized her anger, which supports a healthy grieving process. ¹⁴

The physician team indicated that the presence of the palliative care social worker was helpful in responding to the complex emotional dynamic. The case initiated discussion between the palliative care team and labor and delivery unit staff about enhancing unit-based practices after a fetal demise. Many hospitals subtly identify rooms to indicate a loss, informing staff prior to their entry into the room. In our institution, a small placard is placed on the patient's door. Photographs, footprints, and a newborn hat are placed in a keepsake box and provided to the mother. In the event that the items are left behind at discharge, the clinical director maintains them on file. For some bereaved persons, tangible evidence of the loss can support the grieving process while for others it can cause distress. ¹⁵

A 37-year-old unmarried woman (G2P0) presented with fetal demise at 23 weeks gestation. She was admitted to the hospital for induction. After delivery, the patient became distraught and was placed on observation after expressing suicidal ideation and demonstrating severe agitation. The palliative care social worker and nurse practitioner entered the patient's room and found her sitting in a chair, at significant distance from her partner. The patient was withdrawn but tearful. She avoided eye contact, and appeared to be actively grieving. Further assessment of the patient's social and loss history, revealed that she experienced another fetal loss a year prior, triggering intense feelings of unresolved grief. The team acknowledged the patient's losses and encouraged her to verbalize her emotions. She shared feelings of guilt and sadness, and implied conflict with her partner. While research has shown some gender differences among the way mothers and fathers grieve, this “incongruent grief” can serve to strain relationships. ¹⁴ With supportive encouragement, the baby's father expressed sadness about the loss, which provided an emotional connection between the couple. Facilitating communication between the bereaved parents is beneficial both in the short- and long-term grieving process. ¹⁶

The patient expressed regret for having declined the offer to hold the fetus. The opportunity to spend time with the fetus can encourage memory making that can positively impact the grieving process.^5,17 The palliative care team provided therapeutic presence while the patient held the fetus. The patient expressed gratitude for the opportunity and the support of the palliative care team.

Conclusions

Women experiencing fetal loss and their families, as well as the clinicians caring for them, have unique needs that may be enhanced by an interdisciplinary palliative care team. Impeccable assessment, intervention and follow-up can enhance sensitive and supportive care after a fetal demise. Equally important are standards of care for hospital staff caring bereaved parents. Interdisciplinary palliative care teams have expertise in issues of grief, loss, and bereavement and can provide important education and support for clinicians. Our experience highlights the benefits of palliative care consultation in the setting of fetal demise. Palliative care consultants may benefit from familiarity with other hospital and community resources for psychosocial support as well as grief and bereavement counseling with which to coordinate and refer. Further research on the impact of interdisciplinary palliative care support on staff satisfaction in the setting of fetal demise is warranted.

Author Disclosure Statement

No conflicting financial interests exist.